Family & Caregiver
When a person's life ends; there is a grieving process for family and friends. The closer your relationship is to the person the longer the grieving. The grieving of your loss doesn't go on forever and the person is not forgotten. From time to time memories of past events will come back. Those memories for the most part are good for you.
In my case I am still grieving the loss of my wife. My wife is alive but her life is a long way away from what she or I would want it to be or thought we would have. She is not able to do the many things a grandma would do for her grandchildren. She is not able to do many things for herself, plus, she can't live in her own house with me.
Life sucks sometimes. Many people have a tragedy happen in their lives. For me, in my situation, what could I do? I only had two choices. I could stay and deal with the problems and frustrations of being a husband/caregiver or I could leave. I chose to stay!
What choice did I have really? My wife needed me and I needed to honor and fulfill those marriage vows I took so long ago.
Chapter One: Life is good
It is spring 2011; at this point in my life I am thankful for each day I have. I am thankful for my wife, my children, my grandchildren, and my health. I rely on my religious faith to help me through the troubled times.
Sylvia attended a Cosmetology School in Mankato, MN and I attended an Automotive Repair school in Mankato. We had mutual friends who brought us together on a blind date. In the late 90's life is good for Sylvia and me. I had a good job teaching Automotive Service Technology at Riverland Community College. Before I started teaching in 1987 I worked as a mechanic for 21 years at the Ford/Lincoln Mercury dealership in Albert Lea, MN. Sylvia started out her life working as a beautician. She worked for various places in Albert Lea. With raising four children she worked part-time. At the end of 90's she was working at Wendy's and not doing any hair styling. We seemed to have life made, so to speak.
Our children seemed to be doing okay also. Our oldest son worked for a PBS TV station in Appleton, MN; our daughter worked in Bloomington, MN; and our two youngest sons worked in a factory in Lake Mills, IA. In 1993 our daughter married and a few years later she and her husband had a daughter; in 2000 they had a son. It was after our first grandchild was born that I realized how much grandchildren improved our lives.
Christmases, birthdays, and holidays took on a different meaning. Having a grandchild was different than having our own children. It is hard to explain but there is a different relationship between a grandparent and grandchild than there is with parent/child relationship. We love the grandchildren but not more than our children; the grandchildren are miniatures of our children. They have similar looks and mannerism of the parents when they were small.
In 1998 our whole family started spending one week together camping and boating. Our oldest son Jon had a boat and the kids would go tubing and water skiing. We went to a lake in northern MN and camped. I remember the first time Julie and Chad came. Chad had never really done any camping before. They drove from Omaha, NE to Alexandria, MN. It was a long drive and Chad almost backed out of coming. But after the week was over he enjoyed it. Now the week of camping together has became a yearly tradition for all of us. Chad and Julie have their own camper now and take their children camping as much as they can during the summer. It is a good family thing to do.
I remember Y2K and how the beginning of the year 2000 was to bring all kinds of turmoil into our lives; computers would fail to function properly and all kinds of problems would occur. Sylvia and I spent New Year's Eve 1999 with our daughter and son in law playing cards and watching TV. We watched as the ball dropped at Times Square; the year 2000 came and we all survived; now eleven years have gone by.
In the 90's Sylvia and I took several trips together. We flew to Dallas, TX to attend the wedding of our son-in-law Chad's sister; before coming home we spent time in Dallas. We saw the place where John F Kennedy was shot and drove out to South Fork where the weekly TV series "Dallas" was filmed. We traveled to Atlanta, GA to see friends; Missouri to see relatives; Tennessee to see relatives and stopped at Nashville; we stopped in St. Louis to see the Gateway Arch. We spent time with our children at their homes. When possible we pulled a camper and camped at various places. Life was good.
Early in the spring 2001 Sylvia and I decided to take a trip out east. We traveled along the west side of Lake Michigan toward St. Ignace, Michigan. We camped there a few days and went to Mackinac Island for a day. The next day we drove to Sault Ste Marie and watched a ship go through the locks. After leaving St. Ignace we drove through part of Canada and stopped at Niagara Falls.
In New York State close to Rochester, New York, Sylvia got ill and we had to go to a hospital ER to see what was wrong. It was minor; as I remember it had something to do with her breathing. She was released and we continued on our way to Watkins Glen, NY. At Watkins Glen we camped in Watkins Glen State Park and walked in Watkins Glen. From Watkins Glen we continued on through Vermont and New Hampshire to Bar Harbor Maine. At Bar Harbor we camped on the ocean front; it was a neat experience seeing the tide come in and go out. We drove around Acadia National Park. At Bar Harbor we ate live lobster at an open air restaurant. From Maine we drove to Massachusetts and camped outside of Boston. We took a train into Boston and got off at Boston Commons; we saw Old Ironsides, Paul Revere's home, and many other historic sites. We went to Plymouth Rock; it wasn't as neat as we thought it would be. On our drive to the point of Cape Cod, Sylvia wasn't feeling well and slept most of the way out to the point. We went on to Philadelphia where we saw more historic sites and met our son Jon. He was attending a PBS conference there. We found an Italian restaurant in Philadelphia; they served some great food. From Philadelphia we went home stopping at different places along the way. We stopped in Illinois to see my mother and my brother and his family.
Our family in 2001
In July of 2001 our whole family attended the Panzer family reunion in St. James, MN. In early August we camped in a Dakota County campground (Lebanon Hills) with our children and grandchildren; we went swimming with the grandkids in the pool of the apartment Julie and Chad lived in.
In August of 2001 Sylvia's illness that she had would get worse and because of that illness her life and the lives of her family would change drastically.
This journey that I have been on for these last ten years has made me tired and weary; on some days I feel my strength weakening. I am envious of other people and the freedoms they seem to have even though I really don't know what restrictions those other people may have on their freedoms.
Chapter Two: In Sickness & In Health
When Sylvia and I were married; we used the traditional marriage vows; they read something like this:
Do you "Sylvia/Roger" take "Sylvia/Roger" to be your wife/husband to live together after God's ordinance in the holy estate of matrimony? Will you love her/him, comfort her/him, honor and keep her/him, in sickness and in health, for richer, for poorer, for better, for worse, in sadness and in joy, to cherish and continually bestow upon her/him your heart's deepest devotion, forsaking all others, keep yourself only unto her/him as long as you both shall live?
Sylvia and I said those marriage vows. I don't think we really thought about what the words said; especially the words: "sickness, poorer, worse, and sadness". I think we were caught up in the excitement of the moment; I think we felt like we were invincible. Most couples take the marriage vows seriously and stay married their whole life so later on when some tragedy strikes they will honor those words and care for a spouse who is ill, whatever that illness may be.
We live close to Rochester, MN. It is only an hour drive for us. So we have been to the Mayo Clinic many times; once in 1979 when our five year old son's foot was run over at a drive in Movie Theater. We spent a lot of time there with him. Sylvia also has been to Rochester and the Mayo Clinic many times before August 2001. She had Graves's disease and she received regular check-ups for that plus she had her lungs checked and also had a heart condition. In August of 2001 Sylvia became ill and as a result of that illness there would be major change in her life. My life and the lives of our children, grandchildren, and other family members would change as a result of the illness as well. The change to Sylvia didn't happen all at once like it sometimes does to other people; it progressed over a period of twelve days. In the beginning; there were times when I had hope. I hoped Sylvia and I would be able to get back to a normal life; but; normal would take on a different meaning.
I began keeping a journal shortly after my wife had her surgery in August 2001 with the hope that she would be able to read it and understand what it was like for the rest of her family during this trying time. It is now 2011 and looking back I didn't realize I would still be writing about the intimate and not so intimate details of our life as they happen from day to day. As I wrote, many of my feelings show, I may have been depressed, cheerful, hopeful, sad, happy, angry, or upset. The emotions may have been caused by a situation or a particular person, or I was just plain lonely.
I have thought a lot about writing this story; how to organize it, who would read it, what people would think, how I should start, how our lives would not be private anymore. Writing this memoir is constantly on my mind; it seems to possess all my thoughts as I am thinking about writing about my wife and me. A lot of times I look back and remember how good it was, when I should really be concentrating on how good I have it now compared to what it could be. Today is all I have, nothing less nothing more; yesterday is gone and tomorrow isn't here. So that is what I am going to do, get it all down on paper. There will always be some event that I could add, but those events can go into my journal.
Lots of events in our lives seem to have no end at the time they are occurring. Some examples that I can think of are: Tornadoes, the oil spill in the gulf in 2010, when you are out of a job and looking for a new one and they are hard to find, waiting for the birth of your first child or grandchild, anticipating a wedding day, waiting for someone to come back to the hospital recovery room after surgery. Sometimes this waiting for some event to happen occurs faster for one person than another. Like a child waiting to go to a birthday party and the parent realizing the party day is here already and a present wasn't bought. Then there is having a stroke; some people gain almost all their functions back, some never survive, some only regain a small portion of their functions. The affects of the stroke never go away no matter how long you wait.
These have been extremely difficult times with some really good times as well. My Missouri Synod Lutheran faith has helped me through all this. There have been many ups and downs; my faith has been tested many times and I feel it has survived. I know when this all started I had better expectations of what the final results would be, but God has a plan for us and this is one plan that I need to live with.
I have changed in many ways since my wife had her heart surgery and stroke. At first I had a big chip on my shoulder and it showed in how I treated my children and other people. I felt that I was the only person in the world with problems. As I think about my personality, a couple of things come to my mind lately that describes it; one is related to an old TV show "I Led Three Lives" and the other is a book written in 1886 made into a movie in 1931" The Strange Case of Dr. Jekyll and Mr. Hyde".
"I Led Three Lives" was aired on TV from 1953-1956. It was about Herbert A. Philbrick a person who leads three lives; by day he was an advertising executive in Boston and by night he was an undercover agent for the FBI and a counter spy during the anti-communist cold war years.
"In The Strange Case of Dr. Jekyll and Mr. Hyde" Dr. Jekyll has a split personality; he is a normal person who is good for the most part. I said normal, not perfect but; he has another personality, Mr. Hyde, who is a rather evil person.
I am not unlike like Herbert A. Philbrick; I lead three lives. I am myself, Roger Panzer a normal person, similar to Philbrick and Dr. Jekyll. I do things for myself just like I would if Sylvia still lived at home; I meet friends; I attend church meetings; and I go to choir practice. The other person I have to be is my wife Sylvia Panzer, a grandmother and mother. I have to do some of the things she would do if she could, sending out greeting cards and thank you notes, buying gifts, keeping the house clean, cooking for family events like this last Easter (2011), and other duties that she would normally perform. As I thought about who the third person would be like in Herbert Philbrick's life, I thought that other personality might be similar to Mr. Hyde. I am not as evil as Mr. Hyde was but there are times that I am not a nice person. Let me explain:
At the beginning when this all started there were times when I was not a very nice. I wasn't always the nicest to the nursing home staff in accessing the care I thought that Sylvia needed or was lacking in getting. I felt that Sylvia and I should be a priority when compared to other patients. I complained about Good Samaritan employees when things didn't go the way I thought they should. Sometimes it was about simple things that could have been taken care of very easy, like the various glasses of water setting around Sylvia's room or Sylvia's clothes not hung up properly. I thought the aids or nurses could at least take care of this. Other times it was not as simple, like when the call light was not answered in over thirty minutes or forgetting to take Sylvia to eat after her insulin shot was given. Sometimes she waited over thirty minutes to go to eat. These things that didn't get done were important to me. It is hard to decide which battle is most important to fight.
It took me awhile, but I have learned that the life Sylvia and I have is not other people's problem. They, the medical staff are there to help, but can't carry my burden. In all this I have not lost sight of my job as husband/caregiver and advocate for my wife. I will speak up when I need to.
I haven't always been nice to my children either; I was very demanding of them. I thought my children should do more for their mother and I told them so. I recall one time when our children were in the eating area of Good Samaritan with Sylvia and me. I think it was shortly after Sylvia was admitted to Good Samaritan in the early part of 2002. I guess I was just angry with the world. I told Julie that she should be around more; that I could use her help and her mother wanted to spend more time with her. Chad jumped to her defense and even seemed a little angry with me. He was just protecting his wife which is something I would want him to do.
I thought my daughter should help her mother more than she was doing even though she had two young children that needed her to care for them. At that time my three boys were single and could give more time. But even they could only give so much; they had jobs to go to. The main responsibility for being a caregiver was only mine. I had expectations of my children, and other people for that matter, that could not be fulfilled. From it all I have come to appreciate my children more than I ever used to. I even appreciate the employees at Good Samaritan.
It took awhile but I finally realized that all people have problems, some of them are pretty bad and others not so bad. Many times those problems aren't viewable to the public but they are there. Sylvia's problems are obvious; she has to be in a wheelchair all the time and when she eats she spills her food and must wear a clothing protector. Other people may have an illness that doesn't show; like cancer. Usually people don't want to take these problems out and show everybody. It is a personal thing.
But through all this I have learned to treat my children better. I try not to interfere with their lives. I may not always approve of what they do, but it is not for me to decide how they should live their lives. I try to treat my children with the respect they deserve. I am not as vocal as I used to be with the nursing home staff. That doesn't mean that I quit being an advocate for my wife. I still get my point across about how I think her care is lacking without being extremely vocal about it. I also give compliments where I think they are needed. I am not perfect, just frustrated with my life.
So I ask myself "How can my wife be fortunate when she had a severe brain injury?" I guess her good fortune lies in the fact that she can see, talk, feel pain, (yes that is a good thing) reason (that's another good thing), and feed herself. She has a very supporting family that tries to make her life as normal as it can be.
In all this turmoil I have dealt with the other so called normal things in my life as well; working until retirement on May/2009, taking care of a house, plus others. It was very hard for me to accept help from church people, friends and neighbors; I thought I could do everything myself; I was wrong.
Even though I am married and my spouse does not live with me. I still love her and I can't explain how bad I feel sometimes that she has to live where she does.
Chapter Three: Surgery at St. Mary's Hospital
Friday August 17th; the day starts out normal like most days do with nothing major happening. The fall semester at Riverland will start soon; I am at school preparing for the automotive classes I teach. Sylvia is at her job; she works the drive up window at Wendy's. She likes her job; she likes to be organized and at this job she uses those organization skills to get the drive up orders ready. Somehow she is able to keep all the orders straight. Around 12:00 my son Jason was called by a worker at Wendy's; Sylvia wasn't feeling well and needed to go home and shouldn't be driving. Jason brings her home and calls me. I came home to check on her; she was laying on the couch in the family room. I asked her how she felt and what had happened. This is what I found out. At 11:30am the owner of Wendy's came up to her and started a conversation with her and soon after that conversation she developed a severe headache and a burning sensation in her upper chest. Later that afternoon she got up and felt better. We ate and then at 7:00 things turned for the worse and I had to take her to Albert Lea Medical Center emergency room (ALMC ER) for the same headache and burning in her chest that she had earlier. We spent some time there; she received some medication and we returned home. At 2:00 Saturday morning I took her back to the ALMC ER again; she has a severe headache and burning in her chest again. After spending some time there we return home and the rest of the Saturday goes by pretty well.
Sunday morning at 2:00 we are back in the ALMC ER for the same problem, after spending a few hours at the ER Sylvia feels better and we try to go home; we barely get outside and have to go back into the ER. It is now 7:00; Sylvia is admitted into the hospital; at 10:15 am the doctor decides that Sylvia should be sent to St Mary's ER in Rochester, MN. She rides in an ambulance and I follow in the car. We spend some time in St Mary's ER and then she is admitted to the neurology floor in the Domitilla building of St. Mary's hospital.
From Monday through Wednesday a number of tests are performed; some those tests include; a CT scan, an MRI, a chest X-ray, a 24 hour urine, an angiogram, (During a coronary angiogram, a type of dye that's visible by X-ray machine is injected into the blood vessels of your heart. The X-ray machine rapidly takes a series of images (angiograms), offering a detailed look at the inside of your blood vessels.) and a stool sample. All these tests come back normal. These three days have been tough on Sylvia. She has had headaches so severe that the medication given to her puts her out. Our children spend time with me during the day and Jon stays over a few nights. The only thing found so far; Sylvia is a little anemic but that's all. An Echocardiogram is done twice.
An Echocardiogram is a test that uses sound waves to produce images of your heart. This commonly used test allows your doctor to see how your heart is beating and pumping blood. The doctor can use the images from an echocardiogram to identify various abnormalities in the heart muscle and valves.
Sylvia's gradient number is 164. The doctor explains that her gradient number is very high and Sylvia's heart needs repair. She has hypertrophic cardiomyopathy; her heart muscle is abnormally thick and can't pump the blood out properly; because of this not enough oxygenated blood goes to her lungs and she is short of oxygen. This is not new information; she was told of this heart problem a couple of years earlier. I think she was afraid of having the open heart surgery that she needed to repair the heart problem; so here we are now; but the doctors are not sure what is causing the headaches.
In the early 1980 Sylvia was diagnosed with a thyroid problem; hyperthyroidism or also known as Graves Diseases. It was causing her heart to beat faster than it should and I think this caused her heart problem. She took radiation to stop the Thyroid and then took medication to regulate her thyroxine level. This was a problem she has had for a long time; even before the headaches. There were times when she would walk up steps and as she approached the top she would have to stop to get her breath. In the past she had many tests performed at Mayo Clinic for a variety of health problems. Looking back, she has had a lot of health problems throughout her whole life. I remember a Halloween; probably in 1998. Sylvia and I where trick or treating with Maddison; our granddaughter; our daughter Julie was with also. Sylvia said she had a pain on her right side. She dismissed it as a little back ache. The next weekend we were at Jon's house. Sylvia, her mother, Jeff, Jason, Julie & Chad and I were all there. On Friday night Sylvia's pain got worse and we went to the ER in Appleton, MN. Appleton is a small town of about 1000 people and the medical skill is limited; after Sylvia was examined; the doctor determined that Sylvia had a ruptured appendix. He wanted to keep her overnight and maybe do surgery the next day. During the night Sylvia developed an upset stomach and Zantac was administered by intravenous; shortly afterward she developed an allergic reaction and almost passed out. She survived that ordeal and when the doctor came in the next morning he confirmed his diagnosis. I explained that Sylvia's doctor from the Mayo Clinic said if Sylvia ever needed surgery a cardiologist should be present because of her heart condition.
The Appleton hospital was not equipped for this and after some discussion it was determined that Sylvia should be transported by ambulance to St. Mary's hospital in Rochester so Mayo surgeons could operate on the appendix.
It took five hours to get there; we had a caravan traveling to Rochester; the ambulance, my car, Jeff and Jason, Julie and Chad, and finally Jon. The surgery was a success; Sylvia was sent home with an open incision that I had to dress twice a day. Soon Sylvia was healed and back working again.
Thursday; the doctors think the headaches and burning sensation may be related to stress and anxiety. For some reason I am not sure why but Sylvia was always concerned about her job at Wendy's. She was constantly complaining about it but at the same time she loved it. She was always writing notes about the day of work at Wendy's. I wanted her to quit but she loved what she was doing and being organized when she was working the drive through. She also felt that she was helping us out financially. I think the work gave her a sense of satisfaction.
She gets a medication called Klonipin; it puts her out. At 5:30pm we are sent home from Rochester with four medications; "Paxil, Klonopin, Ativan, and Zestril". We stop at Rochester's Soldiers Field Park and eat some fast food. At this time Sylvia doesn't seem coherent; I am wondering if the medication is causing this. We get home by 8:00 and the evening is going pretty well.
Friday; the day is going pretty well; then at 7:00 we are back to ALMC ER and Sylvia feels dizzy and weak and can't remember things. After being there for awhile Sylvia memory is better and we leave the ALMC ER. We go to the Dairy Queen for a treat and go for a ride. Back at home; it is 10:00; Sylvia goes upstairs and when she comes down she has a slight headache but that is all so we go to bed.
Saturday morning; 4:00 we are back to ALMC ER with the same problem. At 7:00 a decision is made by ALMC ER doctor to send her back to St. Mary's. She is back on the 2nd floor of Domitilla. On Sunday Sylvia still has some headaches but is better. On Monday the Doctors are still not sure what is wrong. If Sylvia gets up the headaches start again.
Tuesday; the neurology doctors think Sylvia should have the heart surgery. The headaches that she is having are blamed on her anxiety. We talk to the heart surgeon and a decision is made by Sylvia and me for her to have heart surgery the next day.
Wednesday; an Angiogram is done before surgery and it checked okay. Our former pastor at our church in Albert Lea comes to visit. Before Sylvia goes to surgery he says a prayer for her. At 2:00 Sylvia goes to surgery; we watch as they take her to surgery saying our goodbyes. We wait; I am not worried about the surgery; my past experience with surgery has been good. Jeff went to surgery many times as a child and he didn't have any problems; Sylvia had four children and an appendix surgery and she recovered from all that. And besides all that we are in Rochester, MN the medical center of the world so to speak. The best of the best are here; what could go wrong? While waiting I am doing a puzzle; I think the puzzle I am working on is a few pieces short. I thought about doing a different one but that one is probably short pieces also. I switch to a magazine; all this to make the time go by faster. Soon a person tells us Sylvia is in the recovery room and will go to the ICU room. When she is situated in the ICU we will be able to see her. All we can do is pray and hope Sylvia will be okay.
When you are admitted into a hospital; you assume on discharge you will be better than when you went in. Before surgery the doctors usually give you some statistics on the procedure. They might say something like; in 2 percent of these surgeries the patient might end up with a negative effect. Two percent doesn't sound bad until you fall into that two percent; then it is 100 percent for you.
We have to wait some more; they will let us know when we can see her. After another wait we are able to see her in the ICU; we are told that a Septal Myectomy was performed on her heart; the heart surgery went well but Sylvia is not responding well to recovery after the surgery.
Septal Myectomy is a surgical procedure performed to reduce the muscle thickening that occurs in patients with hypertrophic cardiomyopathy (HCM). Septal Myectomy is one treatment option for HCM when symptoms persist despite optimal treatment with medications, or if obstruction severely restricts blood ejection from the heart.
We can go into the ICU but we have to take turns going in; only so many can go in. Looking at Sylvia's face I can't tell if she is in pain or not. I hope not. She has a breathing tube down her throat, wires on her chest to monitor her heart, an oxygen sensor on her finger to check her oxygen level, a blood pressure cuff on her arm squeezes automatically checking her blood pressure and also measuring her pulse.
When Sylvia had her appendix surgery everything went well; I wasn't worried; this time it isn't going well and I am worried. I watch as she lies there; her chest going up and down; all the wires that are attached to her body; and the colored wiggly lines flowing across the monitor. The ICU person tells me that all vitals are good. It is difficult to watch her; by the look on her face she looks like she is in pain. I can't stay in here long; it is too sad; on the way out I cried. But I need to go back in when it is my turn. I wonder what will happen.
Thursday; Sylvia is still very slow to wake up and recover from surgery and the anesthesia. A head CT scan and EEG are done. The doctors tell us that it is possible Sylvia had a stroke. Stroke; I know what they are; it doesn't sound good; they don't say how bad it is. Friday we are back at the ICU to see Sylvia; she is still slow in her response to being awakened. She barely opens her eyes when her name is said very loud. When she does wake; she can't see or feel or move any of her limbs. A Carotid artery ultrasound procedure is performed; it is okay. It is sad to come in here. It is a big room with separate rooms situated around a desk where nurses and doctors sit. Each individual room has a nurse that watches the person and the monitor. They are very caring in their response to our questions. I am sure they have answered the same questions from other family members many times before.
Saturday; she has better response and can open her eyes better and nod her head for answers to questions.
Sunday; Sylvia has a better response again today; she can squeeze my fingers with her right hand better and stay alert longer. She breathes for six hours on her own. I find out that Sylvia did indeed have a really bad stroke; it was a Watershed Stroke. What is a Watershed Stroke anyway?
A watershed stroke is a medical term describing a stroke affecting areas of the brain farthest from direct perfusion with blood supply by the major cerebral arteries. Watershed strokes result from hypo perfusion (a lack of blood flow), which can be caused by congestive heart failure, severe atherosclerosis of the carotid arteries, or systemic hypotension (shock). Because the brain's circulation is formed by small end-arteries branching from larger central blood vessels, poor perfusion of the brain most strongly affects tissues supplied by the most distal branches of these arteries, producing ischemia and infarction at the border of these "watershed" areas. A watershed stroke in the region of overlapped distribution between the anterior cerebral artery and the middle cerebral artery classically presents with weakness of proximal arm and leg muscles and preservation of distal strength: colloquially, the "man in a barrel" presentation. This is because this particular region of the brain is responsible for such muscles.
At the beginning I stayed in a hotel here in Rochester just a few blocks from St. Mary's. It was the Ray-Mar Motel. Highway 52 had a major make over back in 2005; the Motel is now gone as well as some of the eating places I went to. The motel room was just a place to stay. When I would get back to my room I would watch a little TV but not much; I went to bed and got up early the next day. I couldn't always stay there though; the room rate is a lot more than the cost of gas for driving back and forth to Rochester. So I drive; plus I have to be in Albert Lea during the weekdays so I can teach my classes at Riverland. Now; 2011; I look back on that time; I wonder how I could do it. Prepare for my classes and teach those classes and then after class make the trip to St. Mary's; spend time with Sylvia and drive back to my home in Albert Lea. The next morning I would be up a little after 5:00; shave and take a shower; stop for some coffee at Bagel's and Beans; and be at school shortly after 6:00 to prepare for my classes that started at 8:00. Before class I would take a break and stop to talk with the building maintenance person. I guess I needed those talks; we got along well and talked about many things. I didn't know it at the time of course, but he wouldn't be around long. In Chapter four you will find out why.
We had two vehicles at the time; a 1987 Ford E-series van and a 1995 Chrysler Concorde. The Concorde was Sylvia's car. She picked it out; she drove it most of the time; she also chose the color. She loved that car.
The drive over and back has become routine; I just drive without paying much attention to the country side or other cars that may pass me. Once I am past Dexter, MN I am half way there. I exit off of I-90 onto MN 63 and then take MN 52 North and turn right onto Second Street. Once I am parked and inside St. Mary's I take the elevator to the fifth floor and go to the Mary Brigh building. I remember one time taking the elevator to the floor Sylvia was on; it stopped at a different floor than the one I wanted; a person pushed a gurney into the tight quarters of the elevator. On the gurney was a body bag with someone inside; I realized then that not everyone who enters the hospital is alive and well when they leave.
Each time I arrive to see Sylvia I anticipate good news; but it is not as good as I would like it to be. During this time that Sylvia is in Rochester; I drive the Concorde; it gets better fuel mileage than the Ford Van. Sometimes I am tired on my drive back home. It is a wonder I didn't fall asleep and drive off the road. Coming into Albert Lea off of I35 there was some road construction. Barricades where up keeping traffic to one lane; one night I hit one of those barricades; thankfully I didn't do much damage to the car. I just scuffed the paint on the left front fender.
On Monday the ventilator tube was removed and Sylvia is able to talk a little. The nurse says Sylvia had very little sleep the night before. Sylvia sat in a chair for a while today; the first time since the surgery. At 6:00 we talk with one of the heart surgeons; the heart surgery is a success but Sylvia has other problems. At 7:00 we talk with a neurology doctor; not much new info from him. Somehow I think they know more than they want to tell me at this time. Sylvia's breathing tube is removed permanently tonight.
Tuesday; at 7:45am I call the room and check on Sylvia. During the night she has rested some but is disoriented. I call Wendy's in Albert Lea and talk to Paula; a coworker; and tell her what has happened to Sylvia; she cries. She will put Sylvia's pay checks in our mailbox at home. Sylvia's eyes look better tonight and she can feel my touch on her left arm and she moves her right arm a little. She does not know where she is. At 7:00 we talk with the neurology resident, he doesn't have much information for us. At 8:45pm Sylvia has a slight headache and is given Tylenol. Her BP is 200/? The first number is too high and I forgot the second number; at 10:05pm I call again this time the BP is better. It is 120/? For some reason I didn't get the lower number again; Sylvia is resting.
Wednesday; Later in the day I call St. Mary's to check on Sylvia; she has eaten well today. My daughter and I talk to a doctor from neurology; Sylvia did indeed have a watershed stroke. We don't know the reason why yet. The doctor tells Julie and me he doesn't give Sylvia much hope. In fact he doesn't have any good news to give us; he thinks Sylvia will spend the rest of her life in bed; it doesn't look good. Julie and I call him Doctor Gloom and Doom. It is not his fault Sylvia is like this; he is just telling us that this is what he thinks Sylvia will be like in the future based on what he sees right now. Later; in 2002; that same doctor will see Sylvia again and be impressed with her progress. Sylvia's heart surgeon seemed more hopeful than the neurology doctor; he told us we would have to look for improvement in weeks instead of days. At that time we did not know what would happen and how our lives would change. I call to check on her when I get home and a PICC, a long term IV, was put in to dispense medication.
Thursday; I call the room to check on her in the morning and at 4:00 I am back at St. Mary's; Sylvia seems better; she eats a good dinner consisting of carrots, mashed potatoes, and cherry pie. Later she feels pain in her chest when coughing and coughs up some stuff. She moves her right arm better and has some humor and smiles a little. Her mother is going to stay with her tonight.
Friday; I call Sylvia's room from school to see how she is doing; the progress is slow. I deposit Sylvia's Wendy's check in the bank. Jason, Julie, Maddison, Ethan, and the Chaplin come to visit. I am here after school. Maddison will be five years old in November; I don't think she really understands what is going on with her grandma. Ethan is only about nine months old.
I wonder; will he ever see his grandma as a normal person again. Sylvia had a good lunch today; which I am sure is a good sign. Our former Pastor visits this afternoon; Jon comes later. I call one of Sylvia's friends to let her know what happened to Sylvia.
Saturday; Jon came home last night and the two of us arrive at Sylvia's room at 8:45am. Sylvia is talking better today. She takes a short nap from nine to eleven; but she stays awake all afternoon. Our former Pastor and his wife stop by to visit again today; their son is in the hospital with a collapsed lung. Sylvia has lots of visitors this afternoon. Jon and I leave at 7:00. Julie, Chad, Maddison, and Ethan went to Albert Lea earlier; they are at our house and Julie is making supper for us. At 9:00 I call Sylvia in her room; Maddison and Julie talk to her. Julie, Chad, Maddison, Ethan, and Jon are spending the night with me; I am glad they are here; it is good support for me.
Sunday; I feed Sylvia her lunch today. At 5:00 Sylvia felt the Blood Pressure cuff checking her blood pressure on her left arm; feeling is coming back. Sylvia ate a good supper tonight. She felt a pain in her left wrist; there is a bruise from surgery there. At 9:00 I call our Pastor at Zion Lutheran in Albert Lea and leave a message about Sylvia's progress. Neurology has seen improvements with Sylvia today; she recognized colors. She removed her left heart monitor patch because it was hurting her skin.
Monday; I call Sylvia's room once in the morning and again just before I leave for Rochester. She has been moved to room 5-650. I arrive at Sylvia's new room; she is watching TV. She answers a question from the TV show How to Become a Millionaire. Her mother is staying overnight tonight. At 7:30pm Sylvia says she is tried and she goes to sleep; I leave for home shortly afterwards. At home I stop at Rainbow Foods and talk with the some friends and my son Jason who is working there. Later that night I call some other friends to give an update.
Tuesday 9/11/2001; I am at school; I don't remember how I found out about the tragedy in New York City, but at 8:00 Eastern Time; the World Trade Center twin towers are hit by two hijacked planes. The Pentagon is hit later that morning by a hijacked plane. Another attempt was aimed at the White House but passengers on the plane gave their lives to stop the attack. It is sad for all those family members of people who died during the attacks and afterwards but it doesn't have the same effect on me as other people. I can't be too concerned with it all; I have my own difficult situation that I am dealing with. I am so consumed with my own problems.
Tonight I am riding with friends to see Sylvia. When we get to her room Sylvia is setting in a chair; she says she can wiggle parts of her body. I feed her supper, which she eats well; later she fells nervous. My cousin from Rochester stops to see how Sylvia is doing. Sylvia talks with us and laughs at something Iris said; I don't remember what it was; but it was good to hear her laugh. Sylvia's mother is spending the night with Sylvia.
Wednesday; I arrive with Jeff; Sylvia had physical therapy today. She brushes her teeth by herself. Neurology says her sight is improving. Sylvia has feeling in her left arm, both legs and feet today. Her X-ray (I don't remember what the X-ray was of) is good. She remembered she had headaches. She has Bacteria in her urine and gets antibiotics for that. Sylvia has hot and cold spells tonight; her right arm and body shake sometimes. At 9:30pm Jeff and I leave for Albert Lea. A friend from Albert Lea leaves a message on my cell phone; I am to stop at their house and pick up a pie she made for me.
Thursday; at 10:00 Sylvia went for an EEG (electroencephalogram).
An electroencephalogram (EEG) is a painless procedure that uses small, flat metal discs (electrodes) attached to your scalp to detect electrical activity in your brain. Your brain cells communicate via electrical impulses and are active all the time, even when you're asleep. This activity shows up as wavy lines on an EEG recording. An EEG can determine changes in brain activity that may be useful in diagnosing brain disorders. It can be useful to determine a brain tumor or stroke.
Tonight I arrive at 4:45 PM; at 6:00 her body shakes start up again and she feels hot and then cold. This problem could be cause by her bowel problem. She does not eat tonight and they give Sylvia a suppository and later try an enema; neither one work. She is miserable and getting worn out. At 7:30 pm another attempt is made to loosen her bowel. At 8:30 pm I go back to the room and she is trying to sleep. Her stool is soft she just can't push it out. Sylvia fed herself a little today and also brushed her teeth; the therapists say the right arm is gaining strength and also the right leg.
Friday; at 10:00 an X-ray is taken of the stomach; (Sylvia had pain there) the X-ray shows no problem. Sylvia has more visitors today. A heart surgeon talks to us and thinks everything is going well. An EEG taken again and comes back normal. Sylvia feed herself breakfast better today than yesterday. Right arm shake is still there but better and she still has some hot and cold flashes. I take Sylvia for a ride in her wheel chair. She looks out side and sees the trees. Tonight she takes a muscle relaxant and I spend the night in her room.
Saturday; Sylvia slept okay last night with no hot and cold flashes, just some coughing. At 7:00 the nurse wakes Sylvia and puts her in a chair for breakfast; she is still sleepy. Jeff comes and stays until 7:00. Sylvia was too weak to eat breakfast or lunch by herself; I think maybe it's the muscle relaxant; she sleeps most of the day. Sylvia eats some of her supper by herself then we take her for a ride in her chair. The neurologist stops by and checks Sylvia; he says she is getting better. This is the end of his two week shift. I go home for the night. Sunday I arrive at Sylvia's room at today at 10:15 am. Sylvia has been eating most of her meals by herself but with some help. Her right arm shook a little today and she felt hot for a while.
Monday; I arrive tonight and meet with the social worker; she works with everyone to find a good solution to help people recover. Sylvia can't stay in the hospital any longer; she must go to another facility to receive therapy; a nursing home. This is depressing news for me. I guess I just thought Sylvia would stay in the hospital until she was back to normal. At the time I was hopeful; I guess I just didn't think Sylvia would never get better. I assumed she would get back to her normal self. I have been told Sylvia's left and right legs are moving some; although I have not seen them move yet. PT went good for Sylvia today and she still eats well. Bowel movements are a problem for Sylvia. Sylvia can see TV and can tell colors on the screen; an improvement to her sight. Each day there is a slight improvement.
Tuesday; I call Sylvia this morning, this afternoon, and tonight. Tonight she is watching How to Become a Millionaire. This is the first time that I have not gone to Rochester to see Sylvia since the surgery; I feel like a deserter because I am staying home tonight. Maybe it is the driving back and forth or the uncertainty of her recovery. It seems hopeless at times but I don't want to give up hope. After all this is Rochester; it has one of the best hospitals in the country and maybe the world. Can anything bad happen here?
Wednesday; I called the hospital room today from work; Sylvia is going to have an Echocardiogram.
An echocardiogram uses sound waves to produce images of your heart. This commonly used test allows your doctor to see how your heart is beating and pumping blood. Your doctor can use the images from an echocardiogram to identify various abnormalities in the heart muscle and valves.
I arrive at 4:30 and Sylvia is in pain with her bowel movement again, the nurse has to help her. Later after supper she has one on her own. I never did find out the results of the Echocardiogram; it must have been okay. My cousin visits and brought some chocolate cookies. Last night Sylvia raised her head off of the pillow something she hasn't done since surgery. ALMC hospital called to ask how Sylvia was doing. She held her head up better today and kicked her right leg up for the therapist. The Pacemaker wires are removed today.
Thursday; a good childhood friend of Sylvia and her husband come and bring Sylvia a plant. I call Social Security to start information since it looks like she will be on disability.
Friday; it is 1:30pm and I arrive at the hospital, Jason has been here for a while. When Jason leaves Sylvia's mother goes home with him; she stayed with Sylvia all week. I talk to the Social Worker about where Sylvia will go for physical therapy. I take Sylvia for a ride in the wheel chair. Sylvia eats a good supper and we go for a ride again, Jon and Jeff call and talk to her. I call Julie; she, Maddison, and Chad talk to Sylvia.
Saturday; this morning the nurse tries to give Sylvia a shower but her knees hurt. This afternoon Jon and Jeff are here and we take Sylvia for a wheel chair ride and even go out into the courtyard of the hospital. Jeff buys Sylvia a neck pillow; it really helps her neck ache. Sylvia's mother and brother come over in the afternoon; Sylvia's mother will stay the night.
Sylvia eats a light supper; all her fruit and juice; but no main course. She just didn't care for it. We go for a ride in the wheel chair again. Sylvia is able to see well. Our pastor calls and talks to Sylvia.
The picture below shows Jon and Jeff with their mom. Looking at her face she looks like she is stressed. Even though the two boys have smiles on their face it is not a happy time for me.
Jon and Jeff with their mom
Sunday; Jon and I arrive in the morning, Sylvia eats a good breakfast. Julie, Chad, Maddison, and Ethan arrive after lunch. Sylvia has a pain in her rectum and the nurse gives her a suppository to help with that pain. At 4:15pm the pain comes back again, the nurse stays in the room and tells Sylvia some kind of intimate details about her and her family. It helps Sylvia relax and it is good for me also. It is something else to think about and a different person to talk with. Sylvia sits in her chair for supper; she feels much better and eats a good supper. When I get home I call Sylvia to see how she is and to let her know I got home okay.
Sylvia with Chad holding Ethan and my daughter Julie holding Maddison.
Monday; I arrive at Sylvia's room after school. Supper arrives and Sylvia eats well. Two visitors come tonight and they bring flowers with a bear on the vase. Sylvia visits with them and after they leave I take her for a ride around the fifth floor of the Mary Brigh building. At 7:30pm I go home.
Tuesday; I went to the safety deposit box to get Sylvia's SSI number. I did not go to Rochester again tonight. Sylvia will be transferred to St. Marks in Austin on Thursday. I talk to a person at St. Marks; they will put Sylvia in a rehab unit on 10/01/2001. I called Sylvia three times tonight. A friend of Julie's called me about Sister Kenny in the Twin Cities as an option for therapy. The only problem is; Sylvia will have to qualify first. If she does qualify; the drive will be longer for me. Our pastor from our church called for an update.
Wednesday; I went to visit Sylvia today we went for a ride in the wheel chair. I put all her stuff together for the transfer to St. Marks in Austin tomorrow. Jeff came to visit tonight and on the way over to Rochester had a car accident. It was only minor and no one was hurt. But still; what more can happen? Isn't dealing with Sylvia enough for me? Jon calls and talks to his mother. Sylvia will have her last physical therapy at St. Mary's today.
Back in Albert Lea; as I drive by a hospital parking lot late at night I look to see if there are any cars parked there. As I check out the parking lot I think about my time in the hospital waiting and wondering what will happen in my life while Sylvia was trying to recover. Is the owner of one of those parked cars also waiting; wondering; is the news they are waiting for good; like the birth of a child or is the news something unknown; yet to be determined. And so the wait happens with nervous anticipation. My waiting is not over.
Tomorrow September 14th; will be a new beginning. I am not sure what kind of beginning it will be. There is hope but I think there is more doubt than hope at this time. It just seems so hopeless and it would seem that I have no control over anything. Other people; nurses, doctors, social workers, therapists, are making those decisions. It probably seems selfish on my part but I wonder; what's next for me?
When I worked on cars for a living; there were a few times when the job I was working on didn't go just the way it should have. Some examples: The replacement part I used failed to fix the problem. During disassembly a bolt would break. It wasn't because I did anything wrong, but the job didn't turn out the way it should and adjustments had to be made. Cars are mechanical devices and problems that materialized could be corrected. For myself; I still felt that I had failed somehow and I made sure when confronted with a similar situation the same problem didn't happen again.
So; I wonder. How does a doctor feel after a surgery he or she has performed does not turn out the way he or she wanted? Do they feel like me and try to find out why the surgery failed. Do they make sure the problem doesn't happen again?
So I wonder about Sylvia's stroke. Could the stroke have been prevented? I don't think so. In her case no one did anything wrong. Even though no mistakes were made; unpredictable things happen. Surgery does not always have a good ending.
Chapter Four: Life in a Nursing Home
September 27th 2001; this is Sylvia's first day at the nursing home. All of a sudden I am thrown into this somewhat bizarre world; like most people I have had some experience with nursing homes since parents and grandparents have stayed in one. This time it is different; my wife has to stay here and I am visiting her Earlier when she went into the hospital there was hope; now the hope doesn't seem as close. Life as we had known it before now ceased to exist. During this time that Sylvia is at St. Marks our family will celebrate our 34th wedding anniversary, five family birthdays, Thanksgiving, Christmas and New Years; some of them we will be celebrate at St. Marks and some at Julies and Chad's home.
I called St. Mary's this morning and Sylvia was doing well. Last night she had problems with her bowels again. Soon I will leave Albert Lea for Austin; Sylvia is coming from St. Mary's to St. Marks by licensed transport. When I get there the room Sylvia is in seems like a dungeon compared to the bright and cheery room at St. Mary's. She has a roommate, but I don't pay much attention to her. My concentration is on Sylvia; I stay with her until 1:00 and then Sylvia's mother and I go to lunch. After a short lunch I take Sylvia's mother back to St. Marks and I go to Albert Lea to get a fan, TV, pictures, and flowers for Sylvia's room. When I am back at St. Marks Sylvia is having a bowel movement problem again. They give her a suppository; it starts to work; soon she starts to feel better and takes a nap. Jeff is visiting his mom this afternoon. The Occupational Therapist (OT) comes in and works with Sylvia for 45 minutes while I talk with the Director of Therapy. Sylvia moves her left hand, something she hasn't done before. The nurse feeds Sylvia tonight and Sylvia drinks out of a glass by herself. That probably seems normal to most people, but it is an accomplishment for her. Sylvia's mother and I go back to Albert Lea at 7:50. Before leaving I tell the nurses to make sure they check on her and say to them; "Sylvia doesn't know how to operate the nurse call button and probably can't see it either". The care Sylvia is receiving here is not the same as she received at St. Mary's. It isn't bad, just not as good as the hospital. While I am traveling home Jon calls to see how the transition went for his mother. At home I call St. Marks to see how Sylvia is doing. The nurse says she is doing well and she had checked her vitals and she was not hot. The hot and cold sensations have been a problem for her off and on. She is still having a tough time with the bowel movement.
Jon and I have Sylvia outside for an hour and a half today; after being outside she is tired. She doesn't have much strength and sleeps part of the afternoon. She eats a good supper tonight and drinks liquids from a glass with no straw. I call at 7:00 to check on her and she is having another bowel problem. I didn't know it at the time, but the bowel problem will be a thorn in her side for a long time.
On Sunday I am back over in the afternoon and take Sylvia to see the rehabilitation area St. Mark's has. The rehab area with its resident rooms has been reconditioned and is much nicer than the room she is currently in. Our family is here and we celebrate Jeff's birthday today. His birth day is on Monday. We take Sylvia outside for awhile. She spends about three hours outside in the wheel chair. Sylvia moves her left hand and her left arm a little, encouraging signs; her left side is the weakest side and has been the last part to show signs of improving. Jon helps Sylvia eat tonight and after eating the bowel problem starts over again.
Jeff is 30 today and Sylvia is moved into the rehab area. Sylvia was up in a wheel chair today and when I see her, she says therapy was good. She did okay eating supper by herself; she had a tuna/egg sandwich, desert, apple juice, and water. There is another woman here that had a stroke and she can't speak because of it. It makes me think how good it is that Sylvia can communicate with us. Sylvia has her own set of problems but is able to tell people what is bothering her and what she needs; what a blessing that is. I call after I get home tonight to check on Sylvia and the nurse says she is OK.
It seems as though there are always many important issues to discuss with my kids lately; today is one of those days. Jason and I talk about work, school, and Sylvia. I call Julie and we talk about the same things Jason and I did. Sylvia's mother and I go over tonight and Sylvia's mother is staying the night with Sylvia. It is hard for Sylvia; she is afraid of her surroundings. I think it is because she has to depend on other people for all the help she needs. I talk to OT about Sylvia's therapy and the therapist says she is doing well. Jeff comes to visit and then he and I go out to eat and talk.
I called Sylvia's mother this morning to see how things went last night and today. It went well and she thought Sylvia had a good therapy session today. I called Sylvia's doctor at the Mayo Clinic; Sylvia had seen her many times before for a variety of medical issues. I explained to her what had happened to Sylvia. She couldn't believe that this had happened.
A friend of ours called me later this evening and told me after seeing Sylvia she thought Sylvia looked good and she thought Sylvia was improving greatly. That's the problem; you can't really tell anything how a stroke victim is doing just by looks. I stayed home tonight and Jeff went over and brought Sylvia's mother home; he thought his mother was doing well.
When I see Sylvia today she is by herself and very upset. She says she has been left alone for a while. I get her to calm down and I talk to the therapist and nurse about not leaving her alone. I will talk to the social worker on Friday about it also. She eats well and has a good therapy session. She was in the wheel chair for more than 3 hours. She goes to back to bed until six and then feels better. I leave at 7:00 and call back at 8:00; she is okay.
I talked to the local doctor who had seen Sylvia at the nursing home yesterday; she does not say much, just that the urine bag might be removed next week. Jason went to see his mother today; he comes home early; he is sad and he cried on the way home.
Today October 21st is our 34th wedding anniversary. To celebrate, Jason and I are driving to the Red Lobster restaurant in Rochester. I am bringing a shrimp meal back for Sylvia. It is a little anniversary present to her from me. Tomorrow the family will be here. We will celebrate our anniversary in the Heritage room. After the party we take Sylvia outside for a while. At supper Sylvia is very sad and she cries. We spend time talking, I am sad also because the future seems so uncertain right now. I guess the future is uncertain for everyone really.
The next day when I am with Sylvia she is feeling more emotion, she cries again. She wants to get better but it is just so difficult for her to do. My kids and I have been talking about Courage Center and maybe Sylvia could go there for therapy. Jeff does not think his mother should go there, probably because it is so far away. Here at St. Marks, OT is working with Sylvia's vision and her left arm. During my time off from school during the Minnesota Education Association conference Jason, Julie, and I go to Courage Center to check it out. After seeing what is expected of the patients I don't think Sylvia will qualify for therapy there. She would have to get to all the therapy sessions by herself and right now that is not possible.
In the past years on Halloween since our grandchild Maddison was born, Sylvia and I would go with her and her parents Trick or Treating. This year Sylvia and I won't be doing that, instead we hand out candy to kids who have come to the nursing to Trick or Treat some of the residents.
The weather this fall is unseasonably warm as you can see by the picture. The grass is green and we haven't had any snow yet. The picture of our children and grandchildren; standing from left to right: Jeff, Julie holding Ethan, me (Roger), Jason, and Jon. Sylvia in the wheelchair and Julie's husband Chad holding Maddison We spend about three hours outside. It is nice to be outside, the temperature is 65 degrees. Jon is staying overnight and is going to spend time with his mother on Monday.
Our family outside in November
This weekend, November 17th and 18th, we celebrate two birthdays. On Saturday our granddaughter Maddison will have a birthday party; she will be five. On Sunday we will celebrate Sylvia's mother's birthday; she will be eighty-two. Both were born on the 19th of November. It is impossible for me at this time to take Sylvia to Maddison's birthday party. I haven't really thought about how I would take her anyplace in a car. I don't know even how I would get her into the car. Plus I don't think I would be able to take care of her once we arrived at our destination. She needs a lot of care right now. For Maddison's party, Sylvia's mother is riding with me to Julie and Chad's in Bloomington; Jon, Jeff, and Jason will come a little later. I am taking video and pictures to show Sylvia when I get back to St. Marks since she can't come to the birthday party. When I get back to St. Marks I show the video and pictures to Sylvia, it makes her sad, the sadness is because she missed Maddison's party. I feel like I have failed to be a good husband since I couldn't take her along so I tell her, "I will do my best to take you to Ethan's birthday party in December." "I will ask therapy to help us so I can transfer you into the car."
Maddison's 5th birthday
When I arrive this evening after work Sylvia says she has been waiting to see me. We go back to her room; she needs to use the bathroom. We ring for help and I also tell the nurse. At 4:05 I tell the nurse again. At 4:18 an aid comes in and I leave to talk to the therapist about Sylvia's therapy.
At 4:25 I am back and Sylvia is crying, not only did she have to wait a long time but she tells the nurse the aids hurt her left arm while taking her to the bathroom. The nurse says she is not hurt that bad but is just feeling sorry for herself and her condition. Both of us think the aids are a little careless sometimes. Later I found out Sylvia was given a flu shot in her left arm and that is the pain she felt. I still think the aids get careless in doing their cares.
At supper I ask if Sylvia will have her shower tonight. An aid says she had a shower this morning. I explain that if she did indeed have a shower it looks as though her hair was not washed. The aid thinks they might not have washed it because she was going to the beauty shop. I ask if they will do something tonight, the answer is maybe. Later a couple of aids ask Sylvia if she wants to go to bed before one of them goes on break. I ask again "is Sylvia getting a shower tonight?" Again it was told to me that Sylvia's hair was washed this morning. I don't think it was washed and I ask for towels. I will try to do something in the bathroom myself. Sylvia's mother says "if they washed it they sure did a crappy job". An aid brings towels in; minutes later an aid says Sylvia will get a whirlpool bath. What a zoo sometimes. I leave to go eat and when I come back Sylvia looks better; her hair looks and feels clean.
Thanksgiving; Julie and Chad came to the nursing home last night and they stayed overnight with me at our house in Albert Lea. Jon came home last night also. All of us, including Sylvia's mother and brother, are going to the Austin Holiday Inn for the Thanksgiving Buffet. This way no one has to prepare a meal and Sylvia can be with all of her family. It would be very difficult to get her into our house at this time. I am using St. Mark's wheelchair van to transport Sylvia to the Holiday Inn. Jon and I arrive at St. Marks at 10:00; the rest will be here shortly. Sylvia is a little nervous about riding in the wheelchair vehicle, but when she gets to the Holiday Inn she has a good time. After eating we go back to the nursing home and to the heritage room for awhile. At 3:00 Jon and I are the only ones left and Sylvia takes a nap. After supper Jon and I take Sylvia back to the heritage room and watch TV until Sylvia needs to use the bathroom. My cousin from Rochester stops to visit on her way back from Fairmont. Sylvia goes to bed at 7:50 pm and Jon and I leave for Albert Lea at 8:30 pm.
The Thanksgiving Buffet 2001
Sometimes on occasions when I arrive Sylvia would see me and start to cry; she thinks I should have been there sooner. The therapist says they are going to work on Sylvia's eating and one of the nurses told the therapist Sylvia does well with verbal commands. Maybe we help Sylvia too much. Sylvia needs to relearn how to eat, so all of us have to let Sylvia feed herself. This will give her a level of independence by allowing her to feed herself. In some ways Sylvia is like a little child learning to eat.
My case worker from Blue Cross-Blue Shield calls. I need to contact Social Service in my county about medical assistance. My Medical Insurance may stop paying because the nursing home is not a heath care facility. Sylvia has to get better faster or I will have to look for other ways to pay for her services. I ask her about Sister Kenny. Sister Kenny is another place that helps people with therapy.
I talked to the business office at St. Marks. They were not aware of the two-week evaluation the insurance was doing. Jon called me at work today about an attorney. He is going to call back with more info.
I go to Social Service in Albert Lea and get an assessment form. My case worker from Blue Cross-Blue Shield left a message on my school phone. I called her back at 4:00. She told me she called St. Marks and was trying to get Sylvia into Sister Kenny. My case worker would know more on Friday. A nurse told me she talked to Sister Kenny about Sylvia. Jeff calls and tells me St. Mark's business office left a message saying Sister Kenny is turning Sylvia down at this point. I figured they would; Sylvia needs a lot of help.
Monday December 3rd; it is our grandson Ethan's birthday. I leave school earlier than usual today so I can go to therapy and work on transferring Sylvia from the wheelchair into the car. Jeff comes over to help also. We learn how to do the transfer. After Sylvia is in the front seat we go for a ride. At first Sylvia is apprehensive and nervous, she doesn't see things well and thinks we are going too fast or we might hit someone. Soon she gets used to it and enjoys herself. When we get back we practice transferring to a commode. We will need to do this when Sylvia is at Julies this coming Saturday.
Today the ambient temp is sixty degrees and there isn't any snow yet. A couple of aids help me put Sylvia in the car. We go for a ride to look at Christmas decorations and we are back after a short time. We had a good time. Instead of eating in the car which would be too difficult I bring Sylvia back to St. Marks and go to Hardees's to buy food for Sylvia, Sylvia's mother, and me. I forgot to buy Sylvia's mother's food so I had to go back for it. Sylvia wants to use the bathroom and lay down. Aids are on break leaving only one person to help, so Sylvia has to wait a long time.
Today is Ethan's birthday party at Julie and Chad's house. When I get to St. Marks Sylvia is eating breakfast. She is excited to go to Ethan's party. An aid helps put Sylvia in the car. Sylvia is sitting in front with me and I borrowed a commode from St. Marks and put it in the back seat. It is too big for the trunk. As we leave Austin Sylvia is doing well. She enjoys the ride and the scenery. The riding in the car relaxes her and she sleeps from Faribault until Burnsville. Jon made a ramp so we can get Sylvia up the steps into Julie's house. At their house, Jon and Jason help get Sylvia out of the car and into the wheelchair and then into the house. Julie and I help Sylvia go to the bathroom. Sylvia sat upright all day except for a forty-five minute nap in the afternoon on Julie's bed. Sylvia had a great day; the trip did not bother her at all. She had a great time with Ethan and Maddison. We will have to do more outings. We leave for Austin at 3:30 pm. When we get back to St. Marks friends are there and they visit until 7:00.
Ethan and his 1st birthday cake
Today I am told my insurance is done paying. Sylvia is not improving enough. I am not sure what I will do to cover the nursing home cost. As I am talking to a nurse I hear a scream. I go check and it is Sylvia; the aids are having trouble lifting Sylvia. They are not putting a foot between Sylvia's feet. She is okay just a little frightened.
Tonight supper is a cold sandwich and Barley soup. Sylvia would like something different to eat than a cold sandwich; I call around to various places and finally go to Jerry's Other Place for a shrimp meal. Sylvia eats all the shrimp, baked potato, garlic toast, and the salad. At about 6:10 we ring for help because Sylvia needs the bathroom and wants to lie down. An aid comes in at 6:35 and wants to know if Sylvia can wait until 7:00 when another aid will be back to help her. Jason and I leave for a while. When we come back Sylvia's mother tells us while we were gone an aid said when she gets time she will help Sylvia. She also hears an aid tell Sylvia in the bathroom that she should know better that to ask to use the bathroom during suppertime. Life is tough in a nursing home!
Christmas will soon be here and Jason and I are taking Sylvia shopping in Rochester. I called our friends to let them know Sylvia will be gone so they won't come over to visit when Sylvia isn't here. After Sylvia is ready we drive to Rochester. We stop at Burger King for a little snack. Sylvia does well in the car. She is concerned that she may never drive again. We arrive at the Apache Mall by the J.C. Penny south entrance. Jason and I get Sylvia into the wheel chair. Once inside the mall we take Sylvia to the bathroom and then do shopping. We go all over the Apache Mall and she is handling it just fine except I can see her eyes looking all around and I ask her if she is alright. She tells me that she thinks everyone is looking at her because she is in a wheelchair. It is just her perception; no one is looking at her. It is a new sensation for her to be in a public place in a wheelchair. Most everyone has seen people in wheel chairs before. The shoppers in the mall are no different, it is just that Sylvia is aware that she is in a wheelchair and thinks people are looking at her. We buy a few things and Sylvia would like to go to Target. We take her to the bathroom again and find her scarf that I left there previously. Jason stops at a hobby shop and picks out a couple of models for his Christmas gift from us. We go to Target and buy a few things there. After that we decide to go to Fazoli's. As we are driving down the frontage road on the west side of Highway 52 Sylvia says she would like Mexican instead and she says "I think there is a Mexican Restaurant near here". She is right; Carlos O'Kelly is here. We go there and eat. Sylvia does very well by herself. After eating we take her back to St. Marks.
Earlier I told my insurance case worker that I felt I needed an attorney especially since my insurance wouldn't be paying anymore. She advised me on how I should find a good one. I need to ask business people, bankers, and an insurance agent who they use for family law. The name I received from each person I asked was the same. That was the person I choose also. Today I am talking to him. I have to apply for Medical Assistance for Sylvia. The Medical Assistance form is a lot of work to fill out. I have to document what the value is on all of our assets. Those assets include house, cars, camper, checking, savings, life insurance and retirement. Anything that has a cash value must be reported. I have to get documentation for all those items to finish filling it out. The attorney is going to work on Power of Attorney for both Sylvia and me. Sylvia has to give Power of Attorney for her to me and I have to do the same for me but when I need it my kids will have Power of Attorney. After that is done he will help with the Medical Assistance form. I tell Sylvia all about the insurance company problem and what we have to do to pay for the therapy and the nursing home. She is upset that we may have to sell the camper. Jeff says he may be able to help with that part. I am not sure that will be an option. We will have to wait and see how it all works out. The main thing is for Sylvia to get well and we will get back on our feet later.
I am going to appeal the decision made by the insurance company to stop paying. The appeal papers are here today. A lady from St. Marks said she would help with the appeal process. I gave her a copy of the letter from Blue Cross/Blue Shield. I talked to my case worker also today. She suggested that I look into the Employee Assistance Program at work for me and also check to see if Long Term Care can be retroactive. The Employee Assistance Program is through Lutheran Social Services. It is designed to help people cope with all the stress in situations like this.
I talk with the Director of Nursing at St. Marks on the phone. She says the nurses and aids will still help Sylvia get better and they can do therapy things. She also states that Sylvia will get better on her own. (I wonder?)
At school I ask about the Employee Assistance Program and Long Term Care for Sylvia. I am given a number for EAP and the person I talked to will check about Long Term Care. The Employee Assistance Program is to help people that may be depressed about their situation. I find out later that Long Term Care can't be retroactive. The end of the fall semester is here. Some faculty members are going to Philly's today. I am meeting them for a little Christmas social. After leaving Philly's I go to see Sylvia. Tonight when I arrive Sylvia is sitting in the dining area watching TV, something she wouldn't have done weeks earlier. I go to the business office to see if someone can be a witness and also a notary. I also talk to another person about having the same aids on Wing Seven where Sylvia is as much as possible. She says it is a schedule problem but agrees that it would be nice for the residents to have the same aids all the time. She will also help with the appeal process. I gave her a copy of the letter from BC/BS.
Sylvia did not like supper tonight so I went to Hardees to buy her a big Roast Beef with cheese. Therapy tried to fix the TV remote so Sylvia could operate it better. They also suggested a remote with big keys. Sylvia's sight is good; her eyes are okay it is her brain that stops her sight from working well. I spent about an hour trying to find a remote and the one I bought did not work so I had to take it back. I got home about 9:20 tonight and looked through the mail; Christmas cards are coming. Sylvia used to do the cards, now I will have to send Christmas cards. I have to send thank you notes out as well, one to the Hannah circle at Zion for the money they gave Sylvia and the other to nurse Misty for the book she gave Sylvia.
It is raining today and still no snow. I go to United Building Center and buy a 4 by 8 sheet of 5/8th plywood. I plan to make a ramp for the back door of our house. The plan is to bring Sylvia home for Christmas. Jon is bringing the ramp he made that he used at Julies house also. Jeff calls and we get breakfast and when we leave the restaurant it starts to snow. We shop for Christmas presents at Wal-Mart in Albert Lea and Target and Shopko in Austin.
At St. Marks Jason and I put Sylvia in bed since she wants to rest awhile. Later she gets up for the bathroom. Because the aids are busy I take her to the bathroom. A couple of aids come to finish and I go outside the room to wait. While standing outside by the door I hear Sylvia scream and she says "it hurts". An aid comes out and says she has to get the nurse. Later I find out that they had trouble getting Sylvia off the toilet back on the wheel chair and Sylvia ended up sitting on the floor. The food tonight is a cold sandwich and soup again. This time I go to Culvers for both of us. Later when Sylvia is in bed I put lotion on her legs and arms. She says her right knee hurts and I look at it. There seems to be something pushing out a little on her right knee. The nurse looks at it and also looks at Sylvia's ankles. She thinks they are swollen. We elevate Sylvia's feet with two pillows and also the bed. Later that evening they look better. Sylvia says she is sore all over; it's probably from the bathroom incident.
Christmas; I have two children who have birthdays this month. Julie was born on the 23rd and Jason was born on the 24th. Today is the 23rd and it is snowing and cold outside this morning. Jon came home last night. Jon, Jeff, Jason and I are getting the house ready for Sylvia to come home. We move the bed from the green room upstairs to the TV room downstairs. We call it the green room because the carpet color is green. The furniture from the TV room which consists of a couch, chair, and recliner is moved to the porch. The furniture from the porch is relocated in the basement. Jon and I get the groceries for Christmas Eve. Later in the afternoon on the way to Austin; Jon says "we should bring my mother home this afternoon instead of tomorrow". At St. Marks I ask the nurses about bringing Sylvia home one day early; it is okay with them. Jeff is here also and with his help we get Sylvia loaded into the car. At home Sylvia is a little sad because she realizes she will have to go back to St. Marks after Christmas. We call Julie and wish her a happy birthday.
It is good that we can have a meal together like we used to before all this turmoil started. We watch Grumpy Old Men and Sylvia stays up until 9:15pm. For the first time since August both of us are able to sleep in the same bed. The next morning is Christmas Eve Day and Jason's birthday.
At 5:50 in the morning Sylvia wakes up and she needs to use the commode, we get that done and she lies down again. I stay up and enter information into my journal that I am keeping. I need to wrap Christmas presents also. Sylvia gets up at 8:30 and we get her dressed. Jon makes French toast for breakfast. It is a treat for Sylvia. Around noon Sylvia's mother and brother come and we will celebrate Jason's birthday. My colleague at school and his wife come over and visit. They give us a gift certificate to Applebee's. We get Sylvia ready and take her to the Christmas Eve church service. After the service the Pastor gives Sylvia a hug and says he is glad to see her here. At home we eat food and watch a movie. Sylvia is in bed by 9:00. I am sleeping on the floor in the TV room with Sylvia. She does not feel comfortable with two people in bed. Sylvia only got up once for the bathroom.
Christmas Day and we get ready to go to Julie's house. I wash Sylvia's clothes. Jeff is taking Sylvia's mother and brother. They want to be back in Albert Lea tonight and Jeff has to be back tonight for work tomorrow. Sylvia, Jon, Jason, and I are staying overnight at Julies. There is a lot to get ready so we can stay overnight. I have to pack clothes for Sylvia and myself and make sure I have all of Sylvia's medication and a commode. We arrive at 11:30; Sylvia is excited to see the grandkids. After we get situated we open all our gifts and everyone is having a good time. We played 500 for a while and Sylvia even joined in and did pretty well. Julie and Chad planed the meal. We are having baked ham with a special honey mustard glaze that Chad made. It tasted great! Along with the ham we had a green bean casserole, mashed potatoes and gravy, baked corn, fruit salad, and pies for dessert. Later Jon, Julie, and I watch the movie "Pearl Harbor", but we fall asleep before the end. When it was time to get Sylvia into bed Jon helped.
Christmas dinner at Julie and Chad's
The next morning Sylvia wakes up at 7:00 to use the commode and then lies down again. Julie is up and makes muffins for breakfast. Chad has to go to work today so he leaves. Sylvia gets up around 9:00 and eats breakfast with us. She eats by herself. Jon leaves for his home around 10:30. Sylvia and I talk and play with the kids and talk with Julie. We stay until 2:30, it is sad to leave since Sylvia has to go back to St. Marks, but she has too. When we get close to Austin I call the nursing home to see if I can get help getting Sylvia out of the car when we arrive. We get back to the nursing home around 4:30. I have to do the transfer from the car to the wheelchair by myself because no one answered the phone at the nurses' station and I didn't want to leave Sylvia alone in the car. Supper tonight is chili and Sylvia does not want that. I go to McDonalds and get a fish sandwich for her instead. We watch the videos of summer vacation, Jeff's birthday, our anniversary, Sylvia's mother birthday, Maddison's birthday, Ethan's birthday, and Christmas. I leave at 7:00.
I call the law office and make an appointment for the next day to go over the Power of Attorney papers. I call Employee Assistance and make an appointment for 1-4-2002. I call St. Marks to make sure my papers can be notarized tonight. Gary and Iris's mother are here. They will witness Sylvia and my signatures on the Power of Attorney papers. Sylvia tells us she walked fourteen steps today.
Today at 9:00 people are coming to help build the wheelchair ramp at the front of our house. It is cold out and there is snow on the ground making working outside more difficult. I am up at 6:00 to clean the house a little and go to Rainbow Foods to buy rolls and bread. At 9:00 most everyone is here. A person from church made the plans for the ramp. Sylvia's brother comes a little later but stays all day. We start building the ramp. At 5:00 in the afternoon we are not done yet but we stop for the day. Jeff goes to Austin to see Sylvia and I take a shower and go to friend's house for supper. It was a long day and I am tired, I am home and in bed by 7:30.
In the afternoon on New Year's Eve Jeff, Sylvia's mother, and I pick up Sylvia and take her home to Albert Lea. She is stuffed up and when she is at home she lies down for a couple of hours. I have supper made when she gets up; pork, potatoes, carrots, squash, and a salad. Sylvia's mother brings a pie. Sylvia takes too big a bite of pork and has a hard time swallowing it. We panic for a while thinking she may choke but she doesn't. Later she can't breathe again so we use Vicks to help her. Friends come over to visit and they wonder if we will be able to come to their house tomorrow night. If Sylvia doesn't feel well we won't. I will call in the morning to let them know what our plans are. We are in bed by 9:30.
New Years Day: The night went pretty well; Sylvia only woke up twice for the bathroom. At 8:30 she is awake; we get her cleaned up and dressed and have French toast for breakfast. We were supposed to go to friends for dinner tonight, but we will stay home instead; I think Sylvia needs the rest. After she brushes her teeth she sits in the recliner and watches the Rose Bowl parade. We have leftovers for lunch; Sylvia's mother is here to help me take Sylvia to the bathroom and transfer to the recliner and also the bed. Later in the day I take Sylvia back to St. Marks in Austin.
I have a bad back tonight so when I leave for home from St. Marks I stop at K-Mart for a back brace. They don't have one so I buy muscle cream and go to a booth where people try on clothes so I can apply the cream to my back right away. At Albert Lea I stop at Wal-Mart but they don't have a brace either.
This morning I am up at 5:50 am to write thank you notes to all who helped build the ramp; I took a hot bath for my back and that helped. At St. Marks the food tonight is Macaroni and Cheese with asparagus and a banana. Sylvia asks for peanut butter and more bread. She wants me to make her a peanut butter and banana sandwich. Sylvia's mother and I get Sylvia ready for bed and have a hard time getting her neck and head situated.
Today is a sad day for me. I am going to the funeral for building maintenance coordinator. He was in charge of maintenance at Riverland. He and I got to be very close; we would have coffee every morning in his office and discuss many things especially my situation with my wife. I think the hospital made a mistake while doing surgery on his Gall Bladder and because of it he died. I am going to miss him and the visits we had every morning. It makes me sad at the funeral. It is hard for me to hold back the tears.
Jason is with Sylvia today. He spends most of the day with her; they go to the living room to watch TV. Because of the funeral, I get there at 5:15 and he leaves at 6:00. Sylvia and I watch home movies and I put lotion on her arms and legs; I think the pain in her knees and legs is better.
After therapy today I go to the business office and tell them I am applying for Medical Assistance for Sylvia. I am told to pay the beauty shop bill for now. I leave for a while and go to Bissen TV to try and find a better TV remote for Sylvia; No luck. I go to Staples and order a big print calendar for Sylvia; I also stop at Kwik Trip and buy a cappuccino for her. Sylvia has bean and ham soup plus a meat sandwich for supper.
Today Jason and I are going shopping with Sylvia. The nursing home is taking a group of people out to the Oak Park Mall in Austin for a shopping trip. Jason, Sylvia and I buy valentines stuff for Maddison and Ethan. We have a little break before going back to St. Marks and Sylvia has a cappuccino. Back at St. Marks, Iris and Gary come over and we talk for about two hours. They want to take me out for supper. I don't feel well, but go with them and visit for a while and have lemonade. Sylvia's knees are sore tonight, it seems like they hurt on the backside. She looks good except her knees bother her. I massage them again tonight.
It is January 17th; tomorrow Sylvia is going to the Mayo Clinic in Rochester, MN for evaluation. When I arrive at St Marks Sylvia is in bed and says the PT person has fixed a pillow for her knees and legs. It seems to help her leg pain. Tonight she will have a whirlpool bath and have her hair blow-dried. She is nervous about tomorrow; she thinks she might have to have an MRI again. I am apprehensive of the outcome. Julie calls and wants me to meet half way tonight because they only have one car. She calls back again and says she and Chad have it worked out. I leave early tonight because I will be back here early tomorrow morning to take Sylvia to Rochester for her medical evaluation. When I leave Sylvia is watching Step Mom and I set the timer on the TV so it will shut off automatically.
The neurologist appointment; This morning I am up at 4:20. Jason and I leave for Austin at 5:00. We make one stop picking up Sylvia's mother. We are at the nursing home by 5:30; Sylvia looks good; the nurses have her ready to go. We leave around 6:00 for Rochester and meet Julie at McDonalds on 2nd Street. Sylvia's appointment is at 7:30. Once we are in neurology doctor's exam room he puts Sylvia through a lot of mental and physical tests.
He checks her memory, reflexes, eyes, and speech. He asks a lot of questions; he has her identify objects, reach for some objects, add, subtract and multiply numbers. He has her remember these words: Mister Thompson, Charity, Orange and Tunnel; later he will ask her to repeat them. When the time comes for her to repeat those words, she responds very well. As she is trying to recall those words, I am mentally recalling them myself; like maybe we will have sort of mental connection and my memory will help hers. He is very impressed with her progress. After that appointment it is time for lunch and we go to Red Lobster; Sylvia has shrimp pasta, a treat for her. At 1:30 we see the physical medicine doctors. The first doctor to come in is one Sylvia seen at the hospital on 9/2001. She is also impressed with Sylvia's progress. She did a lot of evaluation of Sylvia and asked us questions. She steps out for awhile and talked to another doctor. Both doctors come back in and talk to us for a while. It is determined that Sylvia should be admitted to the 3rd floor of Mary Brigh for intense therapy. They will write a letter to the insurance company explaining the need for intense therapy. She might be admitted as soon as next week.
We leave; I drop Julie off at her car so she can go back to Richfield. Jason and I take Sylvia back to the nursing home. When we get there Sylvia needs a bathroom. We put the nurse light on and wait. No one shows so I take her into the bathroom. Sylvia's knees are sore tonight, especially when she is sitting on the commode. One of the aids comes in and explains they are short handed tonight. Another aid comes in and helps me. We get Sylvia into bed to lie down because she is tired. They bring her a food tray and she eats in bed tonight. Sylvia doesn't want us to leave at first and she is sad and cries. Then she says it is okay if we leave. I set up the TV on the timer. We leave about 6:00 and at 7:20 I call the nursing home; Sylvia is sleeping. My insurance case worker left a message for me; the appeal was upheld. I am not sure if that meant the appeal was denied or accepted. I guess it was denied.
The transfer to St. Mary's: (Monday Martin Luther King Day-No School) There is no therapy today. Sylvia will be transferred to St. Mary's Hospital, the Mary Brigh floor, soon. Sylvia talked to the Director of Therapy; she would like us to keep them informed about her progress. A couple of aids came in to Sylvia's room and gave Sylvia their best wishes and they hope she would get better. I tell the business office that a benefit is being planned for Sylvia. The people in charge of the benefit are members from our church, Zion Lutheran, Aid Association for Lutherans and people from school. The money raised will be used to help pay the bills at St. Marks.
Tuesday, January 22nd 2003; Jason is staying overnight at Julie's house and tomorrow he is taking a test for a new job. When I arrive tonight I am told that Sylvia is going to be transferred to Rochester tomorrow. She needs to be there at 9:30am. I call and cancel the cable. I talked to my insurance case worker about Sylvia at Rochester and everything seems to be worked out. My aunt and uncle from St. James stop by on their way back from Rochester. Iris and Gary stop over and talk for a while. I say goodbye to workers here at St. Marks before leaving for the night. I tell them that we appreciated all their help. In a way it is sad to leave, if you can believe that I am saying that. Once I told a nurse; (a nurse that I felt did a great job) "I look forward to the day I would never have to come to St. Marks again". But we have met a lot of nice people here and some I could have done without. It will be strange not going to St. Marks every day. In a way a part of me is staying here and a part of St. Marks (the people) and (the residents) is coming with me. The memories will not fade. Some are ones you I don't want to remember and others are good ones. Tomorrow Sylvia starts a new journey, one which she worries a lot about. I too worry. What will happen? Will Sylvia get well enough to come home? Will she be able to drive the car again like she wants to? I guess I will have to leave it in God's hands.
Some highlights from the many hours of Therapy at St. Marks:
At therapy during the time Sylvia was at St. Marks she learns to stand up with a machine to help her. She sits on the edge of a bench and pedals a bicycle attached to her wheel chair. She does well. She moves her left arm three times while talking to Julie. She can almost pedal the bike a full turn (75%). She stands at the parallel bars and pivots her upper body.
One day she did so well at therapy that she gets a gold star, but the therapy director informs me it is very possible that Sylvia won't walk normally. I have hope that won't be the end result.
They lift Sylvia up by a strap around her chest. She is standing on a walker. She has movement in her left leg.
At therapy Sylvia pulled herself with her right leg and moved the wheel chair with her right hand.
At therapy she is learning to pivot. She practiced pivoting with help from Jon, Jason and me. Learning to pivot will make it easier for us to take her to Ethan's birthday party on 12/8/01.
One day the therapist did a cartwheel for Sylvia because Sylvia pedaled the bike around two times. She was up on her legs today; it was scary for her; she hasn't done anything like that since before her surgery.
One day when we arrive, as soon as Sylvia sees us, she says; "Guess what I did in therapy today?" We ask what? She says "I stood by myself on the parallel bars for five minutes". What an accomplishment I said. Later we heard from other people that she had a great day in therapy. I talked to the therapist about taking Sylvia out tomorrow night to look at Christmas decorations and have fast food. I will need to work with the nurse's aides for help.
Sylvia had a good day in therapy. She rolled over, bent her left knee on command and did awesome according to the therapist. Sylvia ate most of her supper by herself. She looked good today, like she really felt like she did something.
The speech therapist takes Sylvia for evaluation. Sylvia has been working on criteria for Courage Center. She has been trying the motorized wheelchair. It is tough for her to operate. She has a problem with hand/eye coordination. Knowing what time it is and being on a schedule are difficult for her also. I think she has made improvements, such as being more oriented, eating is better, seeing things at a distance better and she is not as upset when I leave at night. I just don't think she will be admitted to Courage Center.
Chapter Five: From the nursing home to intense therapy
January 23rd 2002; This morning I am taking Sylvia to St. Mary's Hospital in Rochester, MN for intense therapy; Sylvia's mother is coming with us. We arrive at St. Marks by 7:30; Sylvia is just about ready to go. She is not used to being up early and sleeps in the car for awhile on the way. We arrive at St. Mary's around 9:00 and after being in her room for a short while, a doctor comes in to check Sylvia. She sets in a chair for the first time since surgery. After lunch Sylvia lies down for a while before the therapists comes in for her. I go to the car and bring in her clothes, clock, and some of her personal items. Julie and Jason call and talk to Sylvia for a while. Jason comes to the hospital in the afternoon and he and I hang up some of Sylvia's pictures. We go to the second therapy session and Sylvia has sore knees but does well. She is tired and lies down for a while and also eats dinner in bed. Dinner tonight is a salad, ham, sweet potatoes, and peas. She eats all of it but the peas. I leave about 6:30 because I have to stop at St. Marks for something I forgot earlier this morning. I don't remember what it was, but I needed to stop there to get it. I think Sylvia will do well here. Everyone is very nice and willing to help her get better.
I have an appointment with my lawyer today; I am still working on the Medical Assistance forms. Before leaving for Rochester I pick up Sylvia's mother. On the way I call Sylvia, Julie, and Jon. Jason has been there and Jeff just arrived a little while ago. Jason helped Sylvia order her food for the next two days. In the hospital, food is ordered off a menu much like a restaurant. Sylvia says her therapy is going good. The PT person stretched her out and she thought that felt okay. She is on Baclofen, a muscle relaxant, which seems to help. Sylvia seems more comfortable in bed and she slept better last night. She laughs and jokes with us. I don't think she feels as sad as she did yesterday. The Chaplin came to visit and said a prayer for Sylvia.
Lutheran Social Service is part of the Employee Assistance program from work. I go at 1:00 and talk with the person about all the problems I am dealing with. I am not sure this is what I need but I will continue for awhile. After that I go home and take a shower then pick up Sylvia's mother and go see Sylvia. Jason has been there since 11:30. He tells us what Sylvia is been doing for therapy and the people who are doing the therapy. The therapy people are great and I think Sylvia is enjoying it.
When Jason came today Sylvia was crying and was having a hard time finding her call button. It seems the medication she is taking has a negative effect on her. The nurse and doctor solved the medication problem. Still she was very talkative and told all about her day. Jason and I went to Fazoli's and ate. While we were gone our former Pastor came to visit. Our current pastor came early this morning. While I am waiting for Jason to come to the elevator, just by chance I was able to talk to Sylvia's heart surgeon. He may come to see Sylvia next week. Jason leaves at 7:00 and I leave at 8:15. Sylvia wants the TV and the lights off when we leave.
I am going to Rochester later today. First I want to wash the car because it is very dirty, then Jason and I are going together. Sylvia's mother and brother are there already. Jason and I stop at Best Buy first to check on a digital camera. I call Sylvia's room and talk to her. She says she dreamt she had a bowel movement in her pants. (Later we find that she did not do it but thought she did) When Jason and I get to the room Sylvia is upset and crying. She thinks something is wrong but does not know what it is. Sylvia's brother says she seems disoriented. Sylvia's mother and brother ask the nurse about any change in medication. The nurses have called St. Marks to verify the medications that Sylvia took there and all are the same. The only thing different is the Baclofen for muscle relaxation. I try to calm her but it does not work. I ask her what is wrong and Sylvia's mother tries to make her quiet. I guess she thinks Sylvia is being loud. I tell Sylvia's mother to stop and she gets upset with me. I just want Sylvia to tell me what she thinks is wrong. Later I tell Sylvia's mother that this whole thing is very hard on me. She says it is hard on her too.
I tell her that I never have a day off. If I am not working at school then I am either with Sylvia or at home washing clothes, watering the plants, cleaning the floors, or sleeping or I am on the road between Albert Lea and Rochester. I don't think she understands my side and maybe I don't understand her side either. We ask Sylvia when her birthday is and she can't remember. Sylvia cannot move her left side this afternoon. They give her Ativan to help her relax. This makes her very sleepy. She even falls asleep in the wheel chair. She can wake up but is not completely there. The nurse says this is normal for the first time with Ativan. We ask the nurse to check Sylvia and she says she is okay.
When supper comes she eats okay, but still is having some problems being oriented. She is starting to come back. She can't open her right hand all the way when holding something in that hand. She won't put the spoon down to pick up a piece of bread. She still can't move her left hand and arm on command. Later when she is in bed, she starts to come back. She can move her left arm and open her left hand. She can move her left leg a little also. I order pizza for us. When it comes Sylvia has some also. By now she is back to where she was yesterday. She even knows that she had a problem for a while today. By the time Jason and I leave at 8:30 pm she is a lot better. What a scary day!
This morning I call the nurse at St. Mary's; Sylvia was given Ativan again to help her calm down. When I arrive Sylvia is upset and crying. Jason and I think a medication is causing the problem. Sylvia eats dinner okay but she still thinks something is wrong and does not feel right. Julie and Chad come with the kids and Sylvia is able to recognize them, but when she gets into the wheel chair she does not think she is in it. She seems drugged because things don't seem real to her. We go to the seventh floor and look out the window to the west; Sylvia doesn't think any of it is real. We go to the second floor and the same thing; nothing seems real. Sylvia is having a hard time with this. She knows something is wrong but can't figure it out. We talk to a doctor and he will reduce the Baclofen; the Ativan will be stopped also. Julie and Chad leave at 4:15. Later when Sylvia is eating supper, she comes out of it and remembers what she was feeling. Jason and I take her back to the second and seventh floors. She understands now and also remembers how she was before. What a weekend, I hope this never happens again. I am going to stay the night with Sylvia in her room.
It is Monday morning and Sylvia wakes up at 5:45 and tells me she needs help using the bathroom. She misses the bedpan and the nurse cleans her up. The nurse thought that she did not put the bedpan under correctly; Sylvia goes back to sleep. I am working on some school stuff while waiting for the doctor. Sylvia has a full schedule of therapy.
First thing to do in the morning is ADL; (Activities for Daily Living), then Speech Therapy, Occupational Therapy, Physical Therapy, then see the Psychologist. After eating lunch, she goes to Occupational Therapy, Recreational Therapy (played cards), Speech Therapy, Physical Therapy and the day of therapy is over. It is a lot to do for someone who has a brain injury. The schedule varies from day to day.
I am meeting with the social worker at St. Mary's at 10:30. Sylvia may have to go back to a nursing home for a while after therapy to continue getting well so she can finally come home and be at home safely. The goal here is that Sylvia will be able to come home and that she will be able to care for herself. Sylvia has a better day today. No more problems from medication. At 5:00 Jason calls to say the weather is bad. I leave St. Mary's before Sylvia has supper; I want to get home before the weather makes the roads slippery. When I get home I call the nurse station and they ring Sylvia's room. I talk to her and she is crying because I am not there to help. I don't know what to do. I can't be there and I can't be home. I just pray that everything will get better.
The next night Sylvia eats supper in her wheel chair and is starved. I think the therapy makes her hungry. She has been in the wheel chair all day except during therapy and a little while before supper. At 6:30 I take Sylvia to Recreational Therapy. The therapy tonight is making chocolate cookies. Sylvia measures all the ingredients and mixes it by hand with some help. Then after the cookies have baked we all get to eat some. Everyone must introduce him or herself to the group. I think it was good therapy for Sylvia. Sylvia's roommate is also good for Sylvia. She has a positive attitude even though she is not able to walk because of Spinal Bifida.
Julie called me at work today to ask how it is going. I have to meet with another instructor after school before I can go to Rochester. Jason goes over this afternoon and Sylvia's mother and I go over at 5:15. Sylvia has been in the wheel chair all day and has had good therapy sessions. The sitting in a wheelchair is a small improvement also. Previously she could only sit upright for a short time. Therapy is working with her arms and legs. Our former Pastor stopped by at 1:15 but Sylvia was at therapy. He left a note. Sylvia has a good supper and after that all of us go to the cafeteria so we can eat also. Sylvia had a shower tonight; she gets one on the even numbered days. Last night when I got home I had a bowl of cereal for supper at 10:10 pm and in bed sleeping by 10:30 pm.
I don't plan on going tonight; I am too tired. I am going to the Iris and Gary's for supper. They have asked many times so I don't want to turn them down. I need to get some other stuff done this afternoon. My insurance case worker calls to see how Sylvia is doing. She wants to know how long Sylvia will be there. Sylvia will be here a total of three weeks and has two weeks left. Jason is visiting tonight and Sylvia wants to talk so he calls me. I was just going to call, but I wanted to be sure that Jason and Sylvia where in the room. She tells me she walked about ten feet today without parallel bars. Jason and PT person had to help her but that still is great. She had braces on her feet. The OT person is doing something with her glasses to help her eyes. When I see the glasses, Sylvia has a patch covering the left half of her right lens. It is supposed to train her brain so that he sight will improve.
On the way over today Jason drives and I sleep; I am tired. The OT person tells me that Sylvia has a problem controlling her eyes up close and sometimes sees two things. After OT, Sylvia sees the PT person. He puts some braces on her legs so she can't bend her knees and she walks about thirty-seven feet. Yesterday she only did ten feet. She has a busy day. Our former Pastor visits for a while before Jason and I leave to for supper. Sylvia says she talked to her doctor and he said she does not have drop foot. That's a relief. Earlier a nurse told Sylvia she had drop foot. Jeff told her they should be careful not to make her worry about stuff like this.
Today I water the plants, sweep and scrub the floors and I am getting a haircut. I am getting some groceries also and planning on going to church tomorrow. I think I need church. Sometimes I am very bitter about all of this. Yet it didn't happen to me. In a way Sylvia's stroke happened to the whole family; some more than others. Some just go about their normal way and others are more involved. For me it seems like life will never be normal. What is normal anyway? Let's just say life has had a drastic change for me; sometimes it is hard to be happy. Sure there are happy moments, like last night we were talking about some of the nurses at St. Marks. We all laughed; but it is not Christian to make fun of other people. This situation in a way seems like a nightmare that will never end. I look for a miracle to happen; maybe it already has and this is as good as it gets. Sylvia is doing well and works hard; I guess I have to take one day at a time. I keep saying that; maybe soon I'll believe it.
I call Julie and Maddison answers the phone. She is excited and talks to me for a while. Sylvia sleeps three hours this afternoon and Jason and I play with some of the computers on the Mary Brigh floor. I try to do some schoolwork but can't concentrate. Later Jason, Sylvia and I take the self-guided tour of St. Mary's. We stop on the seventh floor and look out the widows toward the west side of Rochester. After supper Iris and Gary from Albert Lea come to visit.
Our son Jason with Sylvia; they are looking west from the 7th floor window of Mary Brigh.
I leave Albert Lea this Sunday morning and meet Julie and Chad in Faribault for breakfast. I get to Rochester about 2:00 and Sylvia is just getting into bed to take a nap. While she sleeps I do some schoolwork. Sylvia has a good supper tonight, but for some reason is sadder now. She cries during supper. When they take her to get a shower I leave for home, but I will call later. When I get home I find the outside faucet has been on since I left this morning and the basement is wet. From now on I will have to shut off the water inside the house. When I call Sylvia she cries because I left too soon and did not fix her legs and pillow. While I am on the home phone with Sylvia, Sylvia's nurse calls me on my cell phone. Tomorrow night I will have to try and stay later. Sometimes I think I am going crazy. It is a lot to handle. I will have to retire soon if I am going to be able to do all this. I will call the nurse's station back and check on Sylvia. The nurse says she is getting better but still cries some. I think she is depressed a little.
When I arrive this afternoon Sylvia is in OT. I don't want to distract her so I wait in the waiting area. After Sylvia's OT session the therapist comes and talks to us. She says Sylvia had trouble with both hands during therapy today and the schedulers made a mistake and doubled her times. She missed an hour of therapy today.
I might go to the doctor today; I have wax in my ears and it feels weird. I decide to go and make an appointment for 3:25 today. The social worker from St Mary's called and said he had talked to my insurance case worker. I need to make sure that my local doctor approves Sylvia's transfer to a skilled nursing facility. Also the doctor needs to prescribe therapy so the insurance will pay. For my ears the doctor said I had fluid behind my eardrums and gave me some Clairton samples. I talked to him about Sylvia also. We might get her a place closer to home. I called Sylvia tonight and said I wasn't coming over. I washed clothes, vacuumed the floors, and made supper at home. I am getting caught up on my school work.
Before visiting today Jason and I find All Systems so he can drop off his resume tomorrow. The OT person says Sylvia has had a bad morning and she is not doing well today. She says "Sylvia will probably need therapy all her life". She also says "Sylvia is the most handicapped person she has seen". Those are not the most encouraging words I have ever heard.
Jason leaves for Rochester early today to go to All Systems with his resume. He calls me and says some doctors are going to evaluate Sylvia and she wants me to be there. I leave at 12:45 but miss the evaluation. Sylvia seems to be okay. She has some pain during Physical Therapy. Her Speech Therapy lasts about twenty minutes and at Recreational Therapy she paints a vase. Jason and I see the OT person and she says today was a better day.
Today Sylvia seemed a little tired and said a therapist came in and asked her a lot of questions. I am not sure what the questions were and she doesn't remember. She is a little sore in the left leg (muscle spasms) but took some Darvocet. We went to the seventh floor and looked out and talked. The weather is going to turn bad, so Jason and I leave at 5:30. I feel guilty leaving, because everyone else gets to go home except Sylvia. What a life, I record a TV show called "Ed". On the show, an actor says "Sometimes it seems like life is good at sucking". How true.
I called Good Samaritan today to make an appointment to see the facility. Jason, Jon, and I want to take a look at the therapy department. Sylvia might be going there this coming Wednesday. At Good Samaritan we talk to the social worker and she gives us a tour of the facilities. The therapy department looks good, but some of the resident rooms are small. The food menu seems better than St. Marks. I know what the therapy, nursing, and rooms are like at St. Marks and I don't think Sylvia would be able to get a room there anyway. Everyone I ask thinks Good Samaritan is a good place. We talk it over with Sylvia and she isn't sure either. What to do? I guess Good Samaritan will be the place we use. It will be less time on the road for me.
Jon went to see Sylvia today and spent some time in therapy with her. I am told Sylvia needs new shoes for the braces they made for her feet; the braces keep her feet at a right angle to her ankles. They have a brace for her left hand also; this brace is used to keep her fingers straight and not curl under. Jason and I go to Wal-Mart for the shoes; I hope they will work I will find out tomorrow. When we leave, Sylvia is in bed watching Law & Order.
My insurance case worker calls my cell phone. She explains what must be done so Physical Therapy is paid for by insurance. I talk to the social worker and to Wendy in referrals to make sure the insurance part is being done correctly. Sylvia's mother and I arrive at Sylvia's room about 4:20. When she has to go to the bathroom her left leg has a muscle spasm. We try and rub it out, but it takes some time for it to relax. Later her leg is better. The three of us take a tour around the hospital. Sylvia is in the wheelchair and Sylvia's mother and I are walking. In the children's area they have a neat ceiling. It is painted to look like water and you underneath the surface of a lake looking up. Looking up you can see the bottoms of turtles, ducks paddling, fish and people swimming. We go back to the room and wait for supper; when it arrives; Sylvia's mother and I go to the cafeteria and eat. Jeff comes and meets us there. At 6:40 we head for the RT room so Sylvia can make some candles. She makes two gel candles. Back to the room and Sylvia is going to get a shower so we leave for the night.
This is the last day Sylvia will have therapy at St. Mary's. The social worker from St Mary's leaves a message on my work phone about Good Samaritan. He calls later and says that Sylvia will be able to go to Good Samaritan (Yippee). She needs to be there tomorrow by 10:30. I call the social worker at Good Samaritan and she confirms Sylvia has a room there.
I have my cell phone contract from a local automotive repair shop where I have worked part time during the summer. They have been very generous with the minutes in these stressful times. I ask the owners wife about the excess cell phone minutes I have built up. She says that I am okay for now.
I leave a message for Jon about his mother; I talk to Julie, I leave a message for our Pastor, and I tell Jeff. Jason, Sylvia's mother, and I arrive at St. Mary's at 4:30. Jason and I find the OT and PT people and talk to them. I get business cards from them and we thank them for the good job they have done with Sylvia.
They are neat people. In some ways they have become as close as family. Sylvia's former roommate comes in and talks for a while. Sylvia doctor stops by and talks to us. We have some questions that he answers. The doctor said something to Sylvia which I can't remember what it was but Sylvia came back right away with the comment; "because I am cute". It was neat at the time.
Jason packs up Sylvia's stuff while Sylvia's mother, Sylvia, and I go to the Ash Wednesday service at St. Mary's chapel. We leave for home after Sylvia is in bed.
During these three weeks Sylvia received a lot of support from her mother and brother, her four children, her son in law, her grandchildren, friends and me. I drove the sixty-three miles o Rochester from Albert Lea almost every day.
Chapter Six: Four weeks of therapy at Good Samaritan
Valentine's Day 2002; This Valentine's Day will be different than any we have had before. It will be Day One for Sylvia at Good Samaritan Center in Albert Lea, MN.
Sylvia's mother, Jason, and I leave Albert Lea at 7:00 I want to be at Sylvia's room at Mary Brigh by 8:15. Sylvia has some breakfast and then we leave. I stop at Kwik Trip to buy some doughnuts for the rest of us. We arrive at Good Samaritan at 10:30. Sylvia's room is bigger than I thought; but still not that big. After taking care of all of the paper work, Jason and I go back to her room. Jay the OT is working with her left arm. He also brings in a tray for Sylvia's left arm with a wedge for her arm to rest on. Jason and I leave to go home. I will come back with the TV and some other stuff. When I get back; Sylvia's mother and Sylvia are eating so I join them. Sylvia's mother almost chokes on some steak. It was a tense moment but nothing happened. Jason comes back for a while also. I go home at dinner and Sylvia's mother stays to help Sylvia. I bring back Sylvia's pillow and some nose spray. Sylvia has a hard time with her BM tonight for some reason. Sylvia's brother comes to pick up his mother and visits for a while. I ask the nurse if Sylvia's medication has come yet and if Sylvia has a urinary tract infection. They look up some info in the records from Mayo but can't find them for a while. Sylvia and I watch some TV and then I put in the movie Her Alibi and leave at 7:55. Before I leave the nurse comes in and says that the medication will be late because Snyder had some phone trouble. No medication until after 8:00? I call station four at 9:00 and the nurse says Sylvia is sleeping. End of day one and a questionable beginning. I never found out if Sylvia had a urinary tract infection.
I called the nurses' station this morning and Sylvia's first night at Good Samaritan wasn't very good. She imagined people being in her room and screamed and wanted me. At home with Jason's help I move the single bed from the basement up stairs to the green room. I rearrange the furniture in that room and one of the plants on the top of the cabinet is growing so long it must measure fifteen feet long. I shorten that plant and throw the excess away. I wash the sheets for the single bed and also the blankets.
Later in the evening I help Sylvia get ready for bed. She has a hard time getting settled into bed tonight. Sylvia's roommate is in the hallway calling for someone to come and help her. The nurse comes in with Sylvia's night medication; so I ask if someone is going to help her roommate. The nurse says "she is having a bad night so she is kept in the hallway so they can watch her better". Sylvia wants me to stay later and I stay until 8:45. I pray that she has a good night. It is hard to be there; sometimes I need to get away from it all. I know that Sylvia needs me though. I also want to make sure they take care of her.
The next morning I see Sylvia and she tells me she had a bad night again. Sylvia and I went to the social worker to see what we could do about the problem. Sylvia thought her roommate snoring was part of the problem. Having some soft music was suggested. Plus Sylvia's' bed broke last night so they couldn't adjust it. Maintenance will fix it today. I leave at 10:00 while Sylvia lied down for some rest and I went to buy a CD player for Sylvia to listen to music at night. I am back at lunch time and waiting for Sylvia to use the bathroom. Iris and Gary come; Gary baked a chocolate cake and brought it along. They go to lunch with us. Sylvia does not like the beef potpie and gets the alternate; Chicken Caesar salad. This evening after dinner Sylvia needs the bathroom again. After she is on for a while she is done and waiting for the aids to come. We wait and finally I stand her up and sit her on the bed. The aid comes in and then she says she has to go talk to her nurse. When she gets back she tells me that I can't transfer Sylvia because she could get fired for me doing that. I explain that I have done this before. It doesn't make any difference. I ask if there is enough help. She tells me they only have four aids to help forty-four residents. Also the wheel chair and commode are too tall; I will call tomorrow and see if some different accommodations can be made. At 9:15 I am leaving for the night and set up the music for the CD player. Hope it helps.
Today at Good Samaritan Sylvia is better and had a better night. Sylvia was already done with therapy. Jason and I went to see one of the social workers and asked some questions and also gave some comments.
1. Can the aids tell Sylvia their name? Sylvia can't see well and the nametags are too small for people to read.
2. The wheel chair and commode are too tall for her and need adjustment.
3. A night nurse on 2/18/2002 was very helpful and suggested changing the room so Sylvia could see the TV better.
4. Four aids to forty-four residents creates too long a wait to ask to go to bathroom, then wait to go to the bathroom, and then too long when she needs to get off.
5. Are nurses supposed to help with patient transfers if there are not enough aids or are they just pill and needle pushers? Evidently transferring is not part of their job.
6. One night a nurse left before checking to see if Sylvia had swallowed her pills. What if she had choked on one?
Some of these will get taken care of, but number 4 is a problem. I think it is related to not enough money from the state. Before leaving I put Sylvia's CD player on with some piano music. I'll call later to check on her.
I call the nurse's station early this morning; Sylvia had a bad night again and she would like to talk to me. I talk to her for a while and then went out to see her. She is upset again. I don' know what to do. I talk to her for a while and she seems better. I'll come out again at 11:00. At 11:00 I find Sylvia in therapy. She seems to be doing well and they are getting her a shorter wheel chair. The therapist helps her walk and she does very well with the help of one person. She walked about 15 feet. I leave and go back to school.
So that's the way it is; I call to check on her and stop out often. Sylvia does well in therapy but it isn't good enough. Some days she gets upset about it all. I know she doesn't like being at Good Samaritan, but right now that is the best I can do. An aid from St. Marks came to visit Sylvia. Jason thinks that might be why Sylvia is upset. She remembers the people at St. Marks and how most where good and some we could have done without. Sylvia tries to have a BM, but has trouble and nothing happens. This upsets her also. Sylvia's brother comes to get Sylvia's mom but does not come in to see Sylvia. Sylvia tries the bathroom again and this time she has a BM; now she feels better. Sylvia and I talk for awhile and it is a good talk. I leave at 8:30. While at home typing information into my daily journal on my computer, Julie calls and we talk for a while. They are coming to stay overnight tomorrow night. We are going to celebrate Sylvia's birthday this weekend a little early.
Sylvia's 55th birthday party; Jason and I pick up Sylvia at 9:30 and take her home. She is glad to be home but worries about going back to Good Samaritan. Jon, Julie and Chad are coming home also. Tonight I am making a pork roast. Tomorrow the rest of the family will be here to celebrate Sylvia's birthday a few days early. Sylvia had a good night last night, although she got up three times for the bathroom. We have a good day, except that Sylvia is sad that she has to go back to Good Samaritan. Sylvia's mother makes Sloppy Joes for lunch and also brings the cake and ice cream. Sylvia opens her gifts. Clothes from Julie and Chad, Clothes from Sylvia's mother, A CD from Jon, money from Jeff and Jason, a picture frame from her brother, and a CD player from me. After the party some of us take nap and at 5:15 everyone has gone. Jason and I take Sylvia to Wendy's and then to Good Samaritan. Jason and I stay until 8:30. I hope and pray that Sylvia has a good night. I will call the social worker tomorrow to see if we can change rooms.
55th birthday at home
It is the beginning of the week and a typical day for me; I am up at six and then get ready for school. At school I rush to prepare for class. After school I go to see Sylvia and then usually stay there until 8:00 or 9:00. TV watching is not an option. I usually need to correct some home work or prepare for my classes for the next day. Today I am at Good Samaritan; Sylvia seems in good spirits, maybe it is because she has family and friends visit her this afternoon. We go to the therapy department to check on Sylvia's progress. The therapist thinks she is doing well. The insurance may decide to quit on Thursday, but therapy wants another two weeks to see how well Sylvia can do. I explain that I am looking at all my options and if need be I will try to pay for therapy myself. The only problem with that is can I afford it?
One of the ladies that sit at the same dining table with us invited Sylvia to pizza tonight. She said the pizza should be there by 5:40. At the conference room the pizza is not there yet so we talk. I buy the drinks for the ladies and me. Sylvia and I had a good time visiting and dinning with them. The lady that bought the pizza has many problems but for the most part has a good attitude. She said that there are times when she cries also. I feel very sorry for this lady. I don't think some people deserve the sicknesses that they get, but I know that is all in God's hands. When it is time for Sylvia to get into bed; it is hard to get her comfortable, such a problem with her neck.
Sylvia seems better tonight but I think she is trying to hide her sadness about being here. She said therapy was painful today. I plan on bringing her home this weekend again.
At therapy today Sylvia has a lot of pain in her left knee. She is not sure she can keep up all the work she is doing at therapy. I know it is a lot of pain and work for her to get better. Jason, Jeff and I went to the chapel for a while and talked. Jason took me home while Sylvia got her shower and then I came back to help Sylvia get situated in her bed. It is a problem getting her neck fixed so she is comfortable.
It is Sylvia's 55th birthday today and she received a different birthday present; the insurance gave her another two weeks for therapy. It is not a lot but better than nothing. Sylvia had a lot of company today. At therapy Sylvia walked again and even went up one step with help. That was difficult for her. At 5:00 I am having a pizza party to celebrate her birthday. I invited Sylvia's mother, her brother, Jeff, Jason, two residents. The rest of our children where here last weekend to celebrate. Sylvia got birthday cards from many people and some flowers.
Sylvia is coming home for the weekend; Jason and I bring her home in the afternoon and I make dinner for us; a tuna hot dish. I forgot the peas and did not have any onions for it either. Jason and Jeff drove over to Rochester to get something Jeff needed. They drove home in a snow storm, but came home safe.
The next morning while Sylvia and Jason sleep, I do some preparing for my classes at school on Monday. Sylvia had a pretty good night; although she was up for the bathroom four times and one of those times was for a BM. I helped Sylvia with all the bathroom times myself except for the BM. For that one I woke Jason to help me. Tonight we are planning on going to Applebee's for dinner. We have a gift certificate from my co-worker at Riverland and his wife that they gave to us for Christmas. Sylvia had a pretty good day. I bought groceries while Jason stayed with Sylvia. We had English muffins and eggs for breakfast and hamburgers for lunch. In the afternoon Sylvia took a nap and I worked on school stuff. Jeff called and wanted to know what was going on tonight. I told him his mother did not feel good so Applebee's was cancelled for tonight. I made some pork at home instead. After dinner Sylvia stood by the sink for a while and rinsed a few dishes and dried a few of them also. She pulled herself up from the wheelchair and let herself down.
For breakfast on Sunday we had an English muffin and tomato juice. I know Sylvia hates being at Good Samaritan, but I don't know what to do; she needs the therapy. If Sylvia could change to a different room with a different roommate things would be better. She might move in with a different resident. At least this resident can talk coherently. Jason and Sylvia are watching the Lion King; Sylvia is sitting in the recliner with Jason lying in her bed. As for me I am taking the time to work on a Power Point for school Monday. Sylvia, Jason, and I go to Applebee's tonight for dinner. It is not a happy night. Sylvia does not want to go back to Good Samaritan and I feel like I am doing something wrong. She cries because she is unhappy. She does not like to be here. What do I do? I don't know right now.
My attorney calls this morning; I talk to him about some of my options. I don't want to file for Medical Assistance if I don't have to, but I don't have the money to pay for all of this therapy plus the room at Good Samaritan if the insurance doesn't pay. Sylvia seems well tonight when I arrive; she says therapy was bad again today. She hurt a lot when they did the stretching. They also get her up early and breakfast is cold. She has a care conference coming up on 3/6/2002. I guess we will have to bring up some of these concerns at the care conference. I take her to the lunchroom for dinner and get a call from Jason. Jeff has had an accident. He hit a tree. Jason comes to get me and we look at Jeff's truck. The left front was hit pretty hard and the right door has some damage. Jeff goes home and I call later but he does not have his phone on. I hope he is all right. Back at Good Samaritan Sylvia is in the lunchroom yet. The food is not good. They don't give everyone a bag of chips because they did not order enough. Sylvia also gets the wrong sandwich, another problem for me to contend with. Sylvia tells one of the helpers to get it corrected. Another lady did not get her food right either. It is frustrating that the residents aren't treated better. It's not that they aren't treated well but I think a lot of mistakes are made. Not medical mistakes but food ones.
Back in Sylvia's room it's another stressful night. Sylvia cries about what is happening to her. Chad's parents are baby-sitting Maddison and Ethan this coming Friday night and Sylvia thinks Chad does not want her to watch them. It is not that simple. Sylvia can't take care of a baby because of her limitations. I can't do it either because I spend a lot of time here with Sylvia. I stretch her legs and rub her calves because they are sore. I don't know how long I can take all this either. I leave at 9:10 and go home and type this info into my journal. It is now 9:50 pm I haven't been home since 6:30 this morning. The days get long sometimes.
Early this morning before school I went to Hy-Vee for a roll and coffee. I also got a roll for Sylvia and brought it to her. She was sad and said her breakfast was hard to eat. Her bed had broken again and wouldn't move. I called the social worker about the bed and it was decided that Sylvia was better off staying close to the nurse's station instead of moving to the end of the hall. I called St. Marks about the bill there and also left a message for the Chaplin. I dropped off my appeal papers at my attorney and the insurance contract. At the Post Office I talked to a lady about some of the details of Sylvia's benefit. At 4:00 I am back at Good Samaritan. I took Sylvia to dinner and stayed with her and then went to Hy-Vee for my dinner. Sylvia and I watched Law and Order and I went home after 8:00. Sylvia has a newer bed tonight and it works better for her. Tomorrow Sylvia has a care conference and I have a list of things I would like to discuss.
Wednesday, March 6th Care Conference at 2:00
Here is a list of my questions and concerns
1. Left arm sore yet.
2. What is OT doing?
3. What is PT doing?
4. What about pain medication before therapy?
5. Wheel chair seems to be uncomfortable.
6. Sylvia is having dreams that she is falling.
7. How are the stretches coming and should I learn them?
8. Breakfast is cold.
9. 3/4 dinner was wrong and not too good.
10. Sometimes they give the wrong tray and don't check to see if the name is right. No blue plate on 3/5.
11. Should Sylvia have her own wheelchair?
12. Can we help the aids with transfers?
The responses to the questions
1. Going to watch the left hand and stop the wedge for a while to see what happens
2. Range of motion to continue. Edema seems okay.
3. Lot of tone in left leg. Trying the knee brace tonight. Baclofen pump may be a big help. Try having Sylvia sleep on her side.
4. May not help tone pain
5. New gel cushion today to lower Syl's legs to the floor.
6. New medication from the doctor for seven days
7. Training on Friday at 1:30 pm.
8. New schedule should help. Eating later.
9. Will look into the problem
10. Will look into the problem
11. An will be placed
12. No, It is a liability problem
The time is getting closer to the end of therapy and the insurance company paying for Sylvia's room. Sylvia worries about being home with an aid or going to adult day care. She thinks it might be too much for me. Still she would sleep better at home. I ate with her at Good Samaritan tonight. Food was okay. I stayed until 8:15 and the therapist came in to try the brace on her leg and lay Sylvia on her side to sleep.
I am not sure if sleeping on her side helped last night but Sylvia is better tonight, about the best I have seen since she came there. I hope it continues. The psychologist had a session with Sylvia today about depression; Jason was there also; they spent two and one half hours with him. After dinner Michelle the OT therapist shows us how to do some of the stretches for Sylvia. We have a therapy meeting tomorrow at 1:30 to learn more stretches for Sylvia. I leave at 8:20.
Another weekend; Jason and I are shown some stretches that we should do for Sylvia when she is home. At home Sylvia helps with dinner, we are having salmon patties, she stands at the counter for a while and helps clean the salmon, she mixes the salmon, egg, and crackers and helps Jason make the patties. After dinner Sylvia stands at the counter again to help with the dishes. We go to bed at 10:00 and Sylvia is only up two times tonight for the bathroom. The time between each bathroom use is getting longer.
Julie calls Saturday morning checking to see if we are going to their house today. We are staying home because the weather is so bad; blowing snow and cold. The night before we had freezing rain and wind so the roads are not good to drive on. I don't want to take a chance on the roads with Sylvia when they are not good for driving. Jason was to have a job interview in Madison Lake today but called and talked to the person and he will interview on Monday instead. I went to the grocery store and Jason stayed with Sylvia. We watched TV off and on and I clean the floors and make dinner. In the afternoon Sylvia takes a nap in the blue recliner in the living room. For dinner we are having Lasagna. Sylvia helps me make it and also helps with the dishes afterward. We set out on the porch and watch a James Bond show. Jason comes home at 10:00 and helps me get Sylvia in bed and do her exercises.
Sylvia was up only twice last night for the bathroom. We have a small breakfast and then I wash her hair. Sylvia wants to go shopping. We leave at 10:30 and go to Shopko and the rest of the mall. Sylvia buys some CD's to listen to. She heard a song by Enya and wants the CD. We eat at one of the fast food places and then back to Shopko for some shampoo and conditioner. Then back in the car to go to Rainbow for some groceries. We talk to a couple there and then back home for dinner. Sylvia rests while she listens to her CD's. After dinner it is back to Good Samaritan. Tonight Sylvia is better about going back. It is a tough thing. She knows she has to be there, but does not want to be there. Soon she will be home and I will use adult day care. I think the new medication is helping with the depression. I go home at 9:00 after doing some stretches on Sylvia's legs.
The students are repairing the rear final drive of Jason's truck today and he is bringing my car to school because it is making a noise in the front. The noise is from the brakes and students put on new front brake pads.
I am with Sylvia for dinner tonight; she has the egg bake. After dinner Sylvia and I go to the chapel to talk. We talk about a lot of things but mostly small talk. She is in bed early so we can do some stretches. I leave at 8:10. Driving home I drive to Papa John's and think about the coupon in my billfold for a pizza. I decide to forget it for tonight.
Today is Friday, March 15th. Sylvia's has been here for four weeks. Today is her last day as a full time resident at Good Samaritan nursing home. She is glad to see us when we arrive. The social worker gives Sylvia a certificate and some balloons. Monday she will start adult day care.
Chapter Seven: Adult day care and therapy
Saturday March 16th, 2002; Last night was Sylvia's first night at home and it went well. For now I am sleeping in the living room on my sleeping bag so I can hear Sylvia when she calls for me. It's not the best situation but that's the way it is for now. Taking care of her is a lot of work; I didn't realize how much work it would be. I may need to hire someone to come in and help with daily chores. I get Sylvia ready and we have breakfast. This afternoon we are going to the North Bridge Mall to see the movie "We Where Soldiers". There is a craft show there also. At the mall we spend time looking at the crafts and then on to the movie. Towards the end of the movie Sylvia is tired and her eyes burn a little. She sleeps a little during the show. Afterwards we go home and I make hamburgers for supper. We watch a little TV and then go to bed.
We are up early this morning; Sylvia wants her hair washed before getting ready for church. As we go into church many people greet her and say they have missed her and are glad to see her. One of the hymns today is my favorite, My Song Is Love Unknown. After church we go home for a bathroom break and then to Perkins for breakfast. I call Sylvia's mother and ask her if she would like to go to the craft sale; she does. Julie calls and says they (Chad and the kids) are at our house. I ask her to pick up Sylvia's mother and meet us at the craft sale. We walk and talk and have a good time. When it is time for them to leave Chad's vehicle is blocked in and we have to help him maneuver the vehicle so he can get out of the parking spot. After that we take Sylvia's mother home and then on to the friends for a visit and supper. Other church friends are there also. We have a nice time and get back home by 8:30. I am going to bed soon; Sylvia is in bed sleeping. Tomorrow I am going to do recruiting for my automotive program.
This morning I am up at 6:00. Sylvia is awake but she has to stay in bed until I take a shower and get dressed. Then I will get her dressed. Today is Sylvia's first day at adult day care. We arrive at Good Samaritan by 7:20 and as soon as Sylvia is situated I leave for school. I need to get the program information material and go recruiting at Waseca High School. When I am back in town I pick up Sylvia at 3:30. Sylvia had a lot of company today; it included friends, her mother, and our son Jason. At home I make the evening meal. After eating, Jason and Jeff finish the railings on the ramp. Glad to have that done. Jeff is going to design a little wedge for the end of the ramp. Right now it is a little difficult getting on the ramp from the driveway. Sylvia and I put up the Easter decorations and I clean the floors and washed clothes and rugs. Sylvia suggested we have chili for supper tomorrow night.
Today I am recruiting at Owatonna High School. I have Sylvia at Good Samaritan by 7:20. She will have a shower today. When I pick her up she told me her noon meal was good, but couldn't remember what it was. Before we went home she watched some girl's doing ballet and clapped with both hands. A lady helping with the benefit came over with the posters for Sylvia's benefit. Jason, Jeff, and I will distribute them. Sylvia's left knee is hurting today. I will be glad to see the doctor in Rochester tomorrow and hear what he has to say. We have the chili for supper tonight. Sylvia helped by opening one can with her right hand.
On the way to Rochester I drop off a benefit poster at a restaurant in Hayward, MN and one at St. Mark's nursing home. Maybe some of the employees from St. Marks will come. For lunch we eat at Victoria's; it is an Italian restaurant in downtown Rochester. They serve great Italian food. Next we go to St. Mary's to see the physical medicine doctor, he is the therapy doctor. He thinks Sylvia should try pool therapy and maybe cortisone for her left knee. We went to Target and shopped for a while and Jason drove home. We are going to see our local doctor in Albert Lea tomorrow.
Sylvia is at Good Samaritan by 7:45 and stayed until 12:15. I take a benefit poster to Dave Syverson Ford, where I worked from 1967 till 1987. I spend some time talking with a secretary there, for about twenty minutes. At Sylvia's doctor appointment, her medication is changed; Celexa and Vioxx are stopped. A new medication for her knee inflammation is started. We went to Family Medical to see about getting a single hospital bed. We go back to Good Samaritan and have a pizza party with two people from Sylvia's table. We are home by 6:15 and watch TV, and then go to bed early.
Every week day I take Sylvia to Adult Day Care in the morning and pick her up before 5:00. I spend the day at school and at home making the evening meal for us, plus do the rest of the house work. You know: wash clothes, vacuum floors and dust. Plus I need to prepare for my classes the next day or correct home work. Jason still lives here with us and is a great help. One night he went to the hospital to be with Jeff. Jeff was at work and cut a finger on each hand and needed stitches. I try to make our life normal, but normal has many meanings. Sylvia and I grocery shop together and I take her to church. Sylvia's nights are pretty good; she wakes up more than once at night and calls for me saying she needs to use the bathroom. We go to church and sometimes the out-of-town kids come and we go out for breakfast and they stay overnight. It all helps. I don't know what I would do without my children. I have wonderful children.
Sylvia is again having cramps in her left leg. She has had problems with it off and on for a long time. Baclofen was given to help her. Sometimes her left leg bends at the knee all by itself and cramps. A lot of mornings Jeff comes over and helps me get Sylvia ready for Day care. I am juggling taking care of Sylvia and doing my job at school.
Starting on Tuesday April 2nd Sylvia will go to Health Reach for pool therapy twice a week for an hour each day. I think the pool therapy will help a lot. I also think Sylvia has more potential and I have to do what I can for her to reach that potential. Sometimes she is crabby with me because she is in pain. Tonight we are tired and fall asleep early. Later I wake up and put her to bed.
As time goes by the nightly bathroom breaks are getting fewer. I think it is a sign that she is better. Jason is home this morning to help with Sylvia. At 3:55 we go to Health Reach to see if they are having the stroke support group. There is no meeting, we go home and order a pizza. Sylvia lies in bed at 6:45; she is tired. Sylvia has a BM tonight and this time she doesn't have any trouble. It is a small thing, but it can sure cause a lot of discomfort if the BM system doesn't work properly.
Maundy Thursday; I called our local doctor today and he suggested giving Sylvia the Celebrex twice a day for a week to see how that works. The Celebrex is being used for swelling and pain in Sylvia's knees. Day care is boring for Sylvia; she does not have much to do even with the activities they have there. Sylvia, Jason and I go to church tonight, and then back home and I make supper.
Good Friday; Sylvia is at day care today until about 1:30. Sylvia and I get our taxes done and then go to Wal-Mart for clothes shopping. I buy socks and underwear while Sylvia gets two nightgowns. Jon gets home for the weekend at 5:30 and we go to Applebee's for supper. Later at home Sylvia falls asleep in the living room sitting in the recliner while watching TV; Jon and I fall asleep also.
It is kind of gross to talk about, but Sylvia's bowel system works ON and OFF. Saturday morning at 3:00 it is working, she has a BM; she has another at 7:00 and another at 10:30. Jon is home and this afternoon Jon, Sylvia, and I are going for a ride in the country. We drive past the spot where a farmhouse used to be. Something happened to the farmhouse and it caught on fire and burned to the ground. Jon, Jeff, and Jason worked for the owner of the property while they were in high school doing odd jobs around the farm buildings.
We drove to Kiester, MN and by the Bricelyn Legion Park. All three of our boys camped at the Legion Park when they were in Boy Scouts. I remember my first time there. I was with Jon. He was in Webelos participating in Spring Camporee and in the Arrow of Light ceremony. The Arrow of Light badge was the only Cub Scout badge that could be worn on the Boy Scout uniform. I spent many a spring and fall there camping with my boys. Today is a nice day, a little windy but warm (42 degrees). Back at our house Jon helps his mother read one of her LTD catalogs. Sylvia's eyesight isn't the best plus it is hard for her to turn the pages.
Easter Sunday; Jon helps Sylvia wash her hair, then Jon, Jason, Sylvia and I go to 9:30 church service. We arrive at church at 9:00. It was a great service; the Pastor talked about Revelations and making everything new again. It seems as if that is what I am trying to do for Sylvia; make everything new again. After church we go home for Easter dinner. Sylvia's mother and brother come over. Sylvia's mother is making the dinner and I make the baked corn. Jeff comes at 12:00. We call Chad and Julie and Julie tells me about this doctor who works with stroke patients who have a hard time seeing. I'll have to check it out.
It is the Monday after Easter and Sylvia's hospital bed is coming tonight. When we get home from school and Day Care I start taking the white bed apart so it can go upstairs. Jason comes home and helps me. The guy from Family Medical is here and sets up the bed. Jason brings down the other single bed and we set that one up in the same room. I am going to try and sleep in the same room as Sylvia. It reminds me of old black and white TV shows were the husband and wife would sleep in the same room but use separate single beds. What did they think back then? Did people really live like that? I don't think so! A reporter from the Albert Lea Tribune comes to interview Sylvia and me. She plans to write an article in the paper for this coming Sunday telling about Sylvia's situation and her upcoming benefit.
Sylvia has a pretty good night; she only got up once for the bathroom. We need to put another sheet on the bed though; it was a little moist. Sylvia thought she was sweating because of the mattress. Today is Sylvia's first day at Health Reach and pool therapy. I give a copy of the papers from the Mayo doctor to the receptionist. Sylvia is in the pool for about a half hour. During that time she did scissors exercise and standing by the edge. It is a lot of work getting her ready for the pool. I have to take her clothes off and put on her swim suit, then after therapy I need to dry her off and put her street clothes back on. We are back home by 4:00 and a lady from church calls; she wants to bring supper over for us. She stays and visits for a while. Iris and Gary come over also and bring cookies and cheesecake. I am tried tonight; sometimes I think that Sylvia doesn't know what I go through. I realize I don't know what she is going through or has been through. It is a very tough situation for both of us. Sylvia is very depressed sometimes with the way things are. I hope she doesn't give up. I hope I don't give up!
Today Good Samaritan is supposed to take Sylvia to Health Reach by 3:00. Good Samaritan staff asked Sylvia and her mother; neither one knows that Sylvia is supposed to go, so Sylvia does not go. I talk to the social worker at Good Samaritan about having someone come in the morning to help me get Sylvia dressed and take her to Good Samaritan. She told me to contact Good Samaritan home health care to see what they have available. For supper Sylvia tells me how to make omelets. Afterwards I go to Wal-Mart for new sheets and a mattress pad for Sylvia's bed and Rainbow for groceries. Jason stays home with his mom. Jon calls, he is leaving for Las Vegas to go to a conference for his work tomorrow and won't be back until the April 11th.
Good Samaritan takes Sylvia to Health Reach for her pool therapy today, but they are late. They think they have to leave by 2:30 but Sylvia needs to be at Health Reach by 2:30. I pick her up at Health Reach at 4:10. She had a good session today. She stood better and her knees felt better. She is tired though and sleeps in the recliner for a while. Later in bed she says her whole body hurts; it might be from the pool therapy.
Sylvia stays home from Day care today. She doesn't feel well and she has a doctor appointment at 11:20. Jason is going to take her in his GMC Sonoma. Sylvia has a cold and we need to ask other questions.
Question to ask at the doctor appointment on April 5th
1. Does any of Sylvia's medication need to be changed?
a. Bowel movement medication?
b. She only takes one glass (6oz) of prune juice a day
2. Does Sylvia need to wear the Ted hose?
3. Are her feet swollen?
a. Is this a problem?
b. What about the braces?
4. Bad cough, taking Robitussin DM started Thursday night at 5:00
5. Eye doctor in the cities supposed to be great with stroke victims.
6. Pain in the legs and weak legs? Knees?
7. How much therapy?
a. Want to make sure she gets enough
b. Good Samaritan: Doing restorative nursing.
c. Heath Reach: Pool and PT.
8. How often should she go into the pool for therapy and how much OT & PT?
On Fridays I only have students for a half day. Jason calls me at school and says Sylvia won't fit in his truck. Now what? I am trying to get a customer car out of the school shop. Finally I am able to leave at 11:15 and get home and take Sylvia to see the doctor. Sylvia's mother goes along with us. We arrive a little after 11:30 and have to wait until 12:30 to see him. He changes some of Sylvia's medication and gives her an antibiotic and cough medication for her cough. After that we go home so I can put a pork roast in the oven, then to Snyder Drug for her medication, then to Quizno's for lunch. I take Sylvia's mother home and go sign the tax papers. I cancel Sylvia's Health Reach appointment for 2:30. The lady from Good Samaritan home health care is here to discuss their services for a Home Health Aide. It is too expensive for me to use. I am going to see if Jason and Jeff will continue to help out instead. I clean the house this afternoon while Sylvia watches "Sleeping with the Enemy".
Sylvia had a rough night with her cough, she was up at 12:00 and 4:00.She coughs so much that she wets herself. It seems there is always something to worry about. At 7:20 I get up but Sylvia is still sleeping. I am going to let her sleep; I think she needs the rest. The next day Sylvia is a little better but she still coughs. Sylvia's mother comes over and dusts the house. We have leftovers for dinner.
In the time from when I first brought Sylvia home and started Adult Day Care, Sylvia did not always go to Adult Day Care. The main reason was that some days she just didn't feel well and wanted to be at home. This would cause me difficulty, since I taught classes at Riverland. Taking care of Sylvia at home is not easy. I can do most of it by myself. I don't think Jason can or even wants to try it by alone. To solve the problem I rely on Sylvia's mother to be here with Jason while I went to school. Sylvia's mother doesn't drive, so I bring her here and then leave for school. During the day Sylvia's mother makes the evening meal for us. That alone takes away some of the pressure. At the end of the day I take her back home again. Sylvia and I grocery shop or do other things during the evening.
During the evenings at home, Sylvia usually sits in the recliner and watches TV. Sometimes she sleeps in the recliner and I sleep on the couch until it is time to use the bathroom, take medication, and go to bed. I also do leg exercises with Sylvia in bed. She can push pretty well with both legs, but her left knee hurts and her left leg cramps a lot.
With me sleeping on that extra single bed in the same room that Sylvia sleeps in didn't work out well. I slept on the floor for a quite awhile. Tonight I am sleeping upstairs. It will be the first time since Sylvia came home. I bought a baby monitor. The transmitter is in the room where Sylvia sleeps and the receiver is upstairs with me. It works out well. When Sylvia calls out for help I can hear her and come down to help her. She usually calls me about twice during the night. It is not easy doing this. I relate the process to having a baby in the house that has needs during the night, but soon the baby starts sleeping all night through; Sylvia does not. I don't think she will ever have a night that she sleeps all the way through, and I doubt she will get to the point that she can get up on her own to use the bathroom.
Sylvia wants to stay home again today, I pick up Sylvia's mother and she stays with Sylvia during the day. Sylvia's cold is still hanging on. After school I go to Hy-Vee for groceries. I am making a pork loin for supper tonight. I want to put more fruit and vegetables in the meal so I buy those also. Jason picks up all the excess wood that is lying around in front yard by the ramp. It looks better. Sylvia seems better tonight.
Lately Jeff has been coming over every morning to help get Sylvia ready for day care and Jason helps out by getting my car from school and taking Sylvia from Good Samaritan to Health Reach most days. One day when Jason and I are at Health Reach to get Sylvia, the therapist tells us Sylvia is doing better. Sylvia will be back for more pool therapy on Friday and three days next week. Tonight after eating I wash clothes and dishes. I am moving the brown single bed back upstairs since I have the baby monitor to use. I have to do house maintenance tonight. I need to repair the rain gutter by the back steps because it is supposed to rain tonight and tomorrow and I don't want to get water in the basement. Sylvia has stayed home four days this week. The cold is really giving her a bad time. Tomorrow she must go because she gets a shower.
At day care today Sylvia has a shower. After I am done with school, Jason and I go to Taco Bell. After that I go to Desktop media to pay my internet bill and Family Medical to order Sylvia a blue lipped plate. The plate will help her eat her food better. I pick up Sylvia from Good Samaritan to take her to Health Reach for her pool therapy. At Good Samaritan there is a mix up and Sylvia doesn't have her swimsuit on. Health Reach therapy seems to be helping. We go to Perkins for supper. Jon comes home; he brings a card with money and two Red-Green movie posters from his work for the silent auction at Sylvia's benefit tomorrow afternoon.
Saturday April 13th, Sylvia's Benefit; Julie and Chad are coming home. They bring six Department 56 baskets from his work for the silent auction. Sylvia's whole family will be going to the benefit this afternoon. Sylvia's mother and brother come over before we leave. The benefit is being held at the American Legion Club in Albert Lea. We arrive at 3:20. At 4:00 people start to come in. At 4:30 Jon, Jeff, Jason, Julie and I stand in the hallway and greet the people as they come into the eating area. It is amazing; the people just keep coming and coming. There is a line of people outside waiting to get in. It is good the weather has cooperated. I think my kids and I know all the people that walk by as we greet and thank them for coming. Later it was determined at least 600 people came this afternoon and early evening to see Sylvia and wish her well. It was most wonderful experience I have had in a long time. Thanks to the members of our church Zion Lutheran and coworkers of mine at Riverland Community College for making the benefit what it was. Also thanks to the many businesses that donated to the benefit.
On Sunday Jon, Julie, and Chad go home and later in the afternoon Sylvia and I go for a walk with the wheelchair around the neighborhood and then take a ride. Jon calls to say he got home okay; he will call again sometime next week. Tonight Sylvia's left knee bothers her when standing.
There is more pool therapy at Health Reach this week after daycare. Jason takes Sylvia there and I pick her up when she is done. It is good that Jason can help out since I am at school. After therapy Sylvia and I buy groceries. While making supper friends stop over and I invite them to have supper with us and Jason. We have a very nice time. After they leave Sylvia sits in the recliner and sleeps for a while and then I get her into bed by 10:00. She has cramping with her left leg again. The lady helping Sylvia at Health Reach says she is improving. Jeff made a base to raise the recliner making it easier to transfer Sylvia to it. I don't think we need it now so Jeff comes over and lowers the recliner base. Since I removed the brown bed I need to rearrange the bedroom for Sylvia. It has more room now. Sylvia's left knee is very touchy; I don't know what to do for it. It is a constant problem. She might need knee surgery.
It is Saturday, the 20th of April. Jason is applying for a job at Home Depot and goes to an orientation this morning. He will have to go on Sunday morning also. Our doctor calls and he will set up an MRI for Sylvia's knee. We completed the thank you notes for people who helped with the benefit. Jeff comes over to work on a dead bolt lock for the back door. Sylvia sleeps for a while this afternoon and seems to feel better after her nap. A couple from church brings supper for us. Sylvia and I had a problem tonight. As I was transferring her into the recliner I lost control and slowly dropped her on the floor. It was a controlled fall, not fast like you might think. She is too much for me to lift and put into the recliner. I called Jeff and Jason and they came and helped me get her back up again. Sylvia was not hurt but shaken up a little. Jeff stayed the night with us.
I call the clinic on Monday to see what they will do about Sylvia's pain in her left knee. Her left leg is swollen on the backside of her knee. The doctor's nurse has left a message for me to call the clinic. By Wednesday morning Sylvia's left knee is a lot better. I call the clinic from school at 7:55 and talk to the nurse. She will call me back later. She calls in the afternoon and says Sylvia has an MRI appointment at 11:45 on Thursday the 25th.
Sylvia's knee hurts yet and she has an MRI today at 11:45 today. I take her there and also to therapy this afternoon. I talk to the nurse about the knee, I should know about the MRI tomorrow. I took the 1987 Ford van to a place in Burnsville, MN to have a wheel chair lift installed. Before this I have always used our car and transferred Sylvia from the wheelchair into the car and back out into the wheelchair for all our travels. I will try and get the van from the lift place tomorrow. At therapy today the therapist hurt Sylvia's knee and didn't seem to care. She just brought Sylvia out and did not say a word. Some friends are bringing supper out tonight. At 6:30 two people will be here to discuss the procedure on how to document the spending of the benefit money. It can only be used for medical expenses for Sylvia. Another person will write out the checks when I give her the bill. The main expense is to pay the nursing home bill from St. Marks. At noon the doctor calls; Sylvia's knee has torn parts and she needs to see the surgeon on Wednesday May 1st.
Sylvia stayed home from day care today. After school Jason and I take Sylvia's mother home and then drive to Burnsville to pick up the van from HDR Specialty Vehicles. Jason drives the car back home while Sylvia and I go to Julie and Chad's to see the kids and Chad. On the way home we eat at Red Lobster. Back in Albert Lea we stop at Jeff's house to show him the wheel chair lift.
Today Sylvia and I go to Perkins for breakfast and to the mall and look at the dolls on display. We buy things for Ethan and Maddison for May Day. Back home Sylvia wants to lie down for a while. It is a battle to get her comfortable in the bed. I call Jeff and ask if he will help put the double bed downstairs again. Jeff thinks Sylvia should toughen up, but I am not sure that is the answer. He comes over and he and I move the double bed downstairs and try it. Sylvia does not think that is good either. We move the double bed back upstairs. We all have a little disagreement as to what Sylvia should do and be doing. The hospital bed is what she will have to use. There is too much pressure on all of us that are close to Sylvia's situation every day. Sylvia is under a lot of stress also and she worries about never getting better and what that will be like. Sylvia's knee problems constantly plague her. She can't see the orthopedic surgeon until Wednesday. I wonder what they will do.
At 8:30 am Sylvia sees the orthopedic surgeon. He checks Sylvia's left knee and gives her an injection in the knee. I am not sure if that will help. After seeing the doctor, I take Sylvia to Julie's house and so we can give Maddison and Ethan their May Day baskets. She is going to make supper for us but the electricity went out in the neighborhood. We have pizza instead, which Maddison and I go pick up. Sylvia and I head home about 7:45 pm.
The film camera we had decided to quit. While staying at Julie's, Jason and I go shopping for a digital camera. Circuit City in Roseville has one that I like and I buy it. I have always wanted a digital camera and so it is good the film camera quit. Julie and Chad are looking at a house in Burnsville to buy. They see one they like and make an offer on it. Sylvia can't get comfortable in Julies bed so she has a rough night. I helped Chad fix the garage door opener remote before we leave for home. Even though the nights were a little tough, Sylvia had a good time seeing the grandkids and being with Julie and Chad.
Sylvia is very depressed tonight; she is physically stronger but she doesn't understand why this had to happen to her. Neither do I, but I know God has his plan and we need to keep the faith and pray that the end result will be what we want or at least close. I hope she has a better night than last night. I call the doctor and he suggests giving Sylvia an Ambein to help her sleep. At 9:00 Sylvia is in bed sleeping and I go to bed.
It is Mothers Day; Jon, Sylvia, and I are going to church. After church we go to the Guest House in Albert Lea for the Mothers day buffet. Jason will get Jeff and they will meet us. We see our friends Iris, Gary, and their family, plus another family and some others. Sylvia's mother and brother sit with us also. At home Sylvia wants me to find a picture of Julie dancing. I can't find it and Sylvia feels depressed because she can't do anything herself to find it. She has to have someone do everything for her.
The 8:00 movie tonight is Double Jeopardy and she watches it. Life sucks right now; I get upset with everything also. Like I said life sucks. I think Jason just drove in the driveway.
Sylvia slept pretty well last night. Jason leaves at 7:00 this morning to go to Rochester for a job interview. Jeff is here to help this morning. We see our local doctor at 9:00. He gives Sylvia Flonase and an antibiotic. He says Sylvia's swelling comes from salt and a lack of exercise. He does not want Sylvia using 4-way nose spray. Use the Flonase instead. Sylvia is upset because she does not have her 4-way nose spray. Using the 4-Way nose spray is counterproductive. At first it helps but soon wears off and makes your nose worse so you need to use more nose spray; so it is never ending. On to Eagan, MN to see the eye doctor that Julie told us about. At the eye doctor, her nose is stuffed up because of the odor coming from carpet. We get through the exam okay and the doctor says her eyes are good but she needs a little stronger prescription. We go back to Julies for awhile and then home by 7:20.
Jason gets a call from All Systems; looks like he will have a job with them soon. Jason and I watch as Sylvia does her therapy. The nurse shows how Sylvia transfers to the table without the disc. She thinks Sylvia is improving and needs OT. I give her the insurance phone number. I don't know if the insurance will pay or not but it is worth a try. Sylvia's mother makes a ham for us for supper and after eating I get groceries while Jason stays home with his mother. Sylvia says she needs to have a bowel movement.
She tried before but couldn't go. We try again now and also try a suppository. Nothing works and Sylvia is in a lot of agony with her bowel problem tonight. I call First Help and they are no help. I call the hospital and we decide to go to the emergency room. After we register and have to wait Sylvia says she has to go and feels sick. I tell the nurse and she says they are full, but we can try the bathroom. We do and Sylvia goes and feels better. We leave the emergency room and go home. Sylvia is feeling better. It is good that Jason is home to help with all of this. I couldn't do it without him.
On Monday May 20th Sylvia has an appointment with her neurology doctor at Mayo in Rochester. He is a consultant for the department of Neurology at the Mayo Clinic. We have to be there at 12:45 pm. We leave early and call my cousin and have lunch with her at Wong's. Sylvia does well with her review. She has to remember lots of things similar to the last time she was here to see seen him. Afterwards we stop at two camper places and see if they have a camper that can be made wheel chair accessible. One place might have something, Universal RV and Marine.
Tonight is graduation for my students and I go to school to finish my grades. I am going to Austin for the awards ceremony and graduation. Jason takes Sylvia to therapy and gets Sylvia's mother. They will take care of Sylvia tonight while I am at graduation. I get home from Austin at 10:25 pm and then take Sylvia's mother home. It was Jon's birthday today. I called him twice today to wish him a happy birthday but couldn't reach him.
Jason is up early so he can be at the job interview with All Systems in St. Paul by 9:00. I am going to school to finish up for the year and Sylvia will have a shower today at Good Samaritan. When I come to get Sylvia the aids forgot to give Sylvia a shower. We talk to the social worker about it and also that Sylvia's day care use will be less now that school is over.
Memorial Day; we are up by 8:00 and have breakfast. Jeff comes over for a little while and then goes back home. Sylvia is sitting in the porch watching TV. I call Julie and see what they are doing and also see if we can spend the night there because Sylvia has to see the eye doctor. While there I am going to take the van to the lift place to see if the rear seat that was removed to make room for the lift can be installed in the back. It would give more seat room. Right now there is only seat room for two people and Sylvia. Sylvia and I are at the mall shopping and have a sandwich at Arby's. Julie calls and says we should come there for supper. Maddison is staying overnight with Peyton tonight. Chad does Julies overnight for her and so Julie, I, and Sylvia talk and watch James Bond.
The next day Julie makes breakfast and helps me get Sylvia ready. Sylvia tries on the swimming suit that she bought yesterday. At 10:00 we leave for the eye doctor for a recheck. This time we have to go to Woodbury. After the check they think her sight is changing for the better and we will leave her glasses alone. Sylvia has to walk a little at the eye doctor to get from the wheel chair to the exam chair. After the exam Sylvia walks back to the wheel chair and also walks in the bathroom. After the eye doctor, we go back to Julies and then HDS to see if they can put the back seat in. They can't, so we just have to get along with front two seats. Before going home we stop at JC Penny to take back one swimsuit and also use the bathroom. At home Sylvia wants to get up out of the wheel chair. I lift her and she walks ten steps. It was a wonderful feeling. One day at therapy she walks the whole length of the parallel bars and half way backwards.
I don't have a need for the 1995 Chrysler Concord anymore since the van has a wheelchair lift. Besides I can use the money to help pay for a different camper. I take the car to Sanderson Repair to put it on their lot for sale.
Today, June 3rd Sylvia has to be at St. Mary's third floor by 11:00. I call my cousin and leave a message asking if she wants to go to lunch with us after Sylvia's appointment. We see the OT person and she says that we should try for outpatient therapy if Sylvia can't have in-patient therapy at the hospital. The doctor thinks Sylvia can do more and wants the therapists to evaluate Sylvia. We have to come back tomorrow to have the evaluation. My cousin calls, we pick her up and go to Perkins for lunch. We have a nice visit and then Sylvia and I go to two camper places to see what we can find that will work and then back home. At 9:00 Sylvia thinks she should have her hair washed for tomorrow. Jason and I help her get her hair done.
The next morning Sylvia and I are up at 5:30 to get ready. We leave town by 6:20 after stopping for coffee and a roll. When we get to St. Mary's, Sylvia needs a bathroom and I transfer her to the stool without the disc. She doesn't use the disc at all today. The first person to see is the cognitive therapist; he is impressed with Sylvia and thinks that she needs more cognitive therapy and reading. The next is PT; he checks Sylvia's feet and ankles and then has Sylvia walk about fifteen steps. He is impressed also. The next person is someone we haven't seen before. He has Sylvia do different things like roll over from both sides and get off of the wheelchair and back on again. He thinks she is doing well also. Now we wait for the doctor to tell us what is next. He will call later with the results. We go to Universal Marine and RV. We talk to the salesman there and decide on a Coachmen trailer to buy. I will trade in the Trail Lite we currently have. Sylvia has had a busy day today. I think she has had more therapy today then all of last week.
No job for Jason yet and he leaves for a while. When he comes back I talk to him and explain that he has to get a job while he is waiting for the other job he wants. He makes a call to Minnegasco and they kind of give him a runaround. My cousin from Albert Lea calls to remind me about going out for lunch with him and his wife plus other cousins as well. Sylvia has therapy today at 2:30 pm. Jason takes Sylvia to therapy and when she gets home my cousins are here and we have lemon pie. It is good.
I get a call from St. Mary's; Sylvia may be admitted back into the therapy department next week on Tuesday for more therapy. A call comes in for Jason from Minnegasco. He has the job and will need to start tomorrow at 9:30 am. We have Shrimp Alfredo for supper. A lady from church comes over to visit and I go outside to mow lawn.
Jason leaves for his new job with Minnegasco before 7:00 this morning. Until he gets hired with All Systems he will continue working for Minnegasco. Jeff comes over and helps get Sylvia ready for day care at Good Samaritan. She is going to the Golden Coral with people from Good Samaritan today at noon. While she is out I pay bills; car insurance, Snyder drug, internet at Desktop Media, groceries at Rainbow Foods, and gas. I stop at Sanderson Repair with rolls for the crew there and go to Fisher Jewelry to thank them for the help at the benefit and then wash the van. I pickup Jeff at 12:00 and we have lunch together. Sylvia says she has a hard time eating at the Golden Coral. At Good Samaritan she needs to have a BM and the aids won't let her finish so she has to finish at Health Reach before she goes into the pool. We have left over shrimp pasta for supper. After supper we attend the Thursday evening service at church, then to McDonalds for a sundae. We don't go to bed until 11:00.
It is Sunday and Sylvia and I are up at 8:00 and watch CBS This Morning while eating breakfast. After eating breakfast Sylvia stands at the kitchen sink and washes her hair with me helping. As soon as she is ready we leave to meet Julie, Chad and the grandkids at Applebee's in Owatonna, MN.
Sylvia, Maddison and Ethan at Applebee's
When we get home I take Sylvia in the wheel chair from our house to her mother's house and back home. It is a little over two miles round trip. Last Friday I pushed her for a ride and we went about three miles. When we get back home Jason helps me take the camper out of the back yard where I store it when not in use. We put it on the driveway so I can get it ready to take it to Rochester next week when Sylvia is back at St. Mary's Hospital for therapy. I plan on staying at a campground there instead of driving back and forth or staying in a hotel.
I am buying a different camper so Sylvia can go camping like we used to. I don't know if I can handle all this pressure. I don't think anyone knows the stress of the situation. I think about how life could be different. I have to try and stay strong and keep my faith strong. The future is uncertain, but it is uncertain for anyone I guess. Every night I pray that Sylvia will continue to improve. She has improved greatly in the last months. I hope and pray the God will continue to grant my prayers and Sylvia's wishes. It takes a long time to recover from a stroke. The stroke Sylvia had; was a bad one. What to do? Just take one day a time!
Today is the June 10th and Sylvia's last time for therapy at Health Reach, tomorrow she starts two weeks of intense therapy at St. Mary's hospital in Rochester. Jeff and Jason help me get the camper ready so I can take it to Rochester. Sylvia and I have pizza for supper tonight and I finish getting the camper ready.
Chapter Eight: 14 Days of Therapy at St. Mary's
Today is Tuesday, June 11th; it is day one for Sylvia at the Mary Brigh building of St. Mary's hospital. We arrive at Rochester by 8:35 am and take the Trail Lite camper to Universal Marine and RV to store for part of the day. I will get it later and take it to the camp site. Sylvia is at St. Mary's by 9:00 and meets with the nurse, doctor, therapy people, and the social worker. Sylvia has therapy in the afternoon and some Recreational Therapy (RT) in the evening. Sylvia feels nervous and anxious tonight. Jeff, Jon, and Sylvia's mother call. Sylvia has a hard time in bed again, just can't get comfortable. Finally at 10:00 Jason and I leave and go to the camper parked at a Trailer Park on Marion Road.
The next morning Jason and I eat at Denny's then he leaves for his job in the cities. He may have a new job in Rochester at All Systems soon. Sylvia's therapy today is with the same people we have had before. The doctor is checking with the Ear Nose Throat (ENT) for Sylvia's nose problem. At 1:00 Sylvia is lying down and I leave for a while. My co-worker at Riverland calls about the instructor training classes at the Chrysler Training facility this summer. I plan on going but really think I should be here instead. Sylvia went to have her nose X-rayed. At therapy she walks about 30 feet with two people helping on each side. Her feet want to cross over each other. Jeff is here and brings Sylvia's pillow and some other things plus the mail. Jason and I go eat at the camper and he goes home. I am back at 8:15 and Sylvia wonders where I was. No rest! Jeff is on the phone with Sylvia. I leave at 10:00 Sylvia has a hard time getting comfortable. The nurse (he kind of reminds us of a friend of ours) tries to have Sylvia take care of herself. I think this will be good for her. The OT person told me that this is a time for me to get a rest and let the hospital staff take care of Sylvia. I'm going to try and do that.
This morning before going to the hospital I stop at Redeemer Lutheran church. I want to talk with the pastor there, but he is on vacation. Sylvia has a lot of therapy today. Her left arm is getting better for range of movement and now she can hold it up longer. Sylvia sees a psychiatrist today and gets a prescription for anxiety. The PT person thinks Sylvia's recovery may take anywhere from two months to two years before she can walk well. After dinner Sylvia is depressed and cries. I leave about 8:15 felling guilty that I am leaving.
Sylvia sees the ENT people and there is not much they can do, maybe surgery. Everyone thinks Sylvia's eyesight has improved. They want her to be more independent and not depend on other people so much, but be able to tell people what she wants done when she can't do it. Sylvia is moving to a private room; her roommate thinks Sylvia is too loud. OT thinks Sylvia's writing is good. I went to the camper place today; not sure the door can be made wide enough for the wheel chair. Well have to see.
Our granddaughter Maddison is having a dance recital today in Minneapolis and I am taking Sylvia. It is a long day for Sylvia, but she enjoys it. Jeff, Jason, Jon, and Sylvia's mother are at the recital also. After the recital we go to Chili's for dinner. Chad's family came to the recital and Chili's also. Jon leaves for his home in Appleton, MN. He gives Sylvia a humming bird feeder and bird food. When we leave, I take Sylvia back to St. Mary's. It has been a long day with the trip to Minneapolis from Rochester and back. I leave for the camper at 10:00.
Sylvia and Maddison at the recital
Father's Day; I sleep later today and get to Sylvia's room by 9:30 am. Jason calls me and says a person from church called the home phone. He wants more information about the Concorde I have for sale. He is thinking about buying it. I call him back and he is interested. Since I am in Rochester, he can talk to Sanderson Repair on Monday and get the keys to test drive it. In later years when Sylvia would see a car that was similar to the Concorde she would say "I really miss driving that car, I really liked that car. I wish I could still drive".
Sylvia and I take a walk outside and go to the courtyard and also the peace garden. Jeff and Jason come over and give me a Father's Day gift. At lunch time Jeff, Jason and I go to the camper to eat and then come back to see Sylvia. I am not coming back to the camper today; I am going home tonight to wash clothes and journal the last few days. Tomorrow I will get the oil changed on the van and go back to see Sylvia.
The next morning at home, after washing and folding the clothes, Jason and I eat at Burger King and I leave for Rochester. Jason is coming over later to get directions for next week when he goes to Golden Valley, MN to receive for training for his new job at All Systems. He will stay with me at the camper tonight and drive to Golden Valley in the morning. Sylvia goes to PT while Jason and I have lunch at the camper. Sylvia has her legs wrapped to see if it helps with the swelling. She won't be able to get a shower tonight because of the leg wrapping. After dinner we go check out the different floors of the Mary Brigh building at St. Mary's. On the fifth floor we talk to two nurses who took care of Sylvia after her heart surgery. We talk about the surgery and how we are looking for a miracle. One nurse makes this comment "Maybe the miracle is still happening". She may be right. Back in the room we watch Goldfinger. Sylvia is in bed at 8:45 and I leave for the camper.
Today OT shows me Sylvia's eye problems. She has what is called a Field Cut.
The web site, Stroke.org, states, Vision field cuts are a more limiting visual change after a stroke. These changes occur when the optic nerve is affected and there is partial vision loss in the left, right or both visual fields in one or both eyes. The most common type of visual field cut is called homonymous hemianopsia and this affects the same side of each eye. This can involve either the right or left halves of each eye.
Field cuts are frustrating for the patient because they don't perceive the field cut as a blacked-out portion of their visual field. Rather, their visual field looks normal to them and they often are not aware that they are missing visual information. The number 8 might be read as a 3 or the patient can trip on an object while walking through the house if it was in the part of the visual field that is not processing information. Your brain might compensate for a smaller visual field cut by using perceptual completion. Frequent head turns and compensatory strategies are the best interventions for this type of vision change. In some cases, prism glasses can be helpful.
One thing that might help her improve her vision is Penlight therapy. This is an exercise using a small penlight to improve a person's sensitivity, awareness and utilization of whatever vision they still have in their affected fields.
The Concorde is sold and the title transferred and insurance on it. I can use the money toward the new camper. Sylvia is worried tonight because I won't be here for a couple of days. I am going to the Chrysler Training center in Plymouth, MN for two days of automotive training. I have to keep up with the changes in the automotive industry as much as I can so I can pass that information to my students at Riverland. I will stay at Julies Wednesday night and come back to Rochester on Thursday.
Today I am at the Chrysler training and it is also Julie and Chad's ninth wedding anniversary. Julie and Chad aren't home yet they are eating at a restaurant celebrating their anniversary. After the class I stop at JC Penny to take back a pair of pants and eat the Old Country Buffet in Burnsville. Chad's sister is watching Ethan, and Maddison is with Chad's parents. Levi, the family dog is going to be put to sleep tomorrow night. Chad is going to do Julie's overnight job tonight, so it is just Julie and I and we talk for a while and go to bed about 10:30.
Today is my last day at Chrysler training; when I am done I drive back to Rochester. Jason has been with his mother since 12:00. While I was gone, Sylvia had two visitors. She walked 75 feet today with help. What an accomplishment, but it won't last.
We have to decide where we want to go for outpatient therapy; Sylvia will be released from inpatient therapy next Wednesday. I would like to keep coming to St. Mary's for the therapy. After therapy today Sylvia is coming home for the weekend. The camper is in and it was ordered for stock, so I am not obligated to buy it. I take Sylvia to see it. It looks nice, but the door opening needs to be changed so a wheelchair can get in. After looking at the camper, we eat at Fazoli's before going home. Sylvia is glad to be home. It is quiet. I am not sure about the camper; I have to make a decision by Monday.
On Saturday afternoon Sylvia and I see the movie "Minority Report". Sylvia does not like it all that well. I write a letter of appreciation to the rehab unit at St. Mary's.
Sylvia slept well last night. Jeff comes over and we have tacos for lunch, then we get ready to go back to Rochester. I take Sylvia to Wal-Mart and Hy-Vee before leaving at 4:00 for Rochester and the hospital. My cousin calls to see how things are going. She lives in Rochester. Her brother and his wife came to visit her on Sunday and also came to see Sylvia.
Today OT shows me how Sylvia is able to dress herself with her help. This is what I will have to do also when she and I are home. I spend most of the day at therapy with Sylvia and also work with the camper salesman on getting a wide door for the camper. Jason is here and he will stay the night and drive to Golden Valley tomorrow for training.
Sylvia does well with therapy, but the calf of her left leg hurts. They will do an ultrasound tomorrow. Jon is coming to Rochester tonight and will stay awhile.
Jon and I go out for breakfast, go look at the camper, then go to the hospital and see Sylvia. This is Sylvia's last day as a patient in the therapy department. I am still working on the camper door and I also need to have sort of ramp so the wheel chair and Sylvia can be pushed into the camper. The maintenance person in therapy is able to narrow the wheel chair to 25inches. This will help a lot. After all the therapy sessions we leave and look at the new camper one last time. I get our camper and we eat at Carlos O'Kelly for dinner. Jon comes to Albert Lea with us and we are home by 6:30. Next Monday Sylvia will start outpatient therapy at St. Mary's. I will take her to St. Mary's every day of the week.
Chapter Nine: Outpatient therapy at St. Mary's
Today is Thursday June 27th; the daily trips to Rochester for therapy begin.
As I write this, you need to remember these abbreviations: PT is physical therapy and OT is occupational therapy. Jason has a new job in Rochester and he leaves at 5:30 am to get there on time. Sylvia had a pretty good night. She woke up once to use the bathroom and twice to have her pillow adjusted. That of course wakes me up because I have to help with each one. We leave at 11:00 for the daily therapy session. Jon is here and going along with us. Sylvia gets a workout at therapy and makes progress. She gets a new PT person and Sylvia likes her. After therapy we go to the camper place to show Jon the new camper and then stop at Hy-Vee in Austin for groceries. At home we grill pork chops and brats. Jeff comes over for a while and Iris comes later and brings food.
Trying to get a good night's sleep and help Sylvia is difficult; last night she woke up more than the night before. It is 8:11 and she is still sleeping. We need to leave soon for therapy, so I will have to wake her so we can have breakfast. The first stop for Sylvia and me is Universal Marine and RV to sign the purchase agreement for the camper. At the hospital we have lunch at the visitor cafeteria and then on to the third floor of Mary Brigh for therapy. Sylvia has a good therapy session; the PT person has her walk on her feet with only the support stockings on, no shoes. She stands by herself on of the mats. She tells Sylvia that this will get better. Sylvia is smiling; she seems encouraged by her words. She realizes that time is what it will take. When we see OT she has good things to say about the new PT person Sylvia is seeing. She is a very good therapist and an international speaker on PT. At the end of the day we meet Jason at Applebee's for dinner. Sylvia is a little sore tonight; I think it is the therapy.
It's the weekend and I am cleaning out the old camper and mowing lawn. In order to tow the new camper with our Ford E150, I need a better hitch, one that will distribute the tongue weight of the camper equally between both the tow vehicle and the camper. I check with two local parts suppliers; I can order one online much cheaper, so that is what I will do. It is Sunday morning and Sylvia washes her hair; in the afternoon we both sleep for a while. Throughout the day Sylvia has a tough time getting comfortable in the wheel chair and the recliner. Later when it is time for bed it is hard to get her comfortable in bed as well.
Last night was a rough night for a while. Sylvia had a hard time getting comfortable in bed and that makes me irritable and crabby. I just get to laying down when she calls me and wants me to get her situated in bed. Then she woke up thinking she was on the commode. Finally after 3:30 am she is situated. Morning comes too fast when the night hasn't been good for sleeping for either one of us. We get up and get ready to drive to Rochester. Sylvia has another new PT person today. These two PT people will split the week. One will take Monday and Tuesday and the other the rest of the week. After therapy Sylvia and I go to the Apache Mall and eat pizza and then go to Cost Cutters and both of us get our hair cut.
This morning before going to therapy I leave the old camper at Universal Marine and RV. I am trading it in on the new one we purchased a few days ago. At therapy today Sylvia makes brownies with the OT person. That doesn't sound like therapy does it. But when a person has limited use of their legs, arms, hands, and fingers, even making something as simple as brownies is difficult. We go to Universal Marine and RV, look at the new camper, and try to figure out a way for Sylvia to get in without buying a new door; it won't work. A wider door that will accommodate a wheel chair needs to be installed. Tomorrow I will check on a ramp so the wheel chair can be pushed up to the door and into the camper. On the way home Julie calls my cell phone; they are coming home for the fourth of July. Sylvia tells Julie she is sad since she hasn't seen her for a while. Jeff says he has had a bad day at work; Sylvia and I worry about him.
Sylvia may be able to get rid of the brace on her left foot soon and have regular shoes. Sylvia walked bare foot again today and she walked around two corners of the mat. OT says Sylvia has improved more than she had hoped for in the last two weeks. Back from Rochester, we stop at home for a bathroom break and then to the church to watch the 4th of July parade. In Albert Lea the parade is held on the evening of the 3rd instead of the 4th. We eat popcorn and watch the parade until the end at 9:50 pm.
Thursday the 4th of July; Another night with little sleep, Sylvia was up at 2:30 at 6:00 at 8:00 and then slept until 10:30 am. Sylvia's mother, and brother, Jason, Julie, Chad, Maddison, and Ethan are here for lunch. Julie and Chad leave for awhile and came back at 6:00 for dinner. When it gets close to being dark enough to see the fireworks, Chad, Julie and the grandkids, Sylvia's mother, Sylvia and I go to Lakeview School and watch the fireworks over Fountain Lake.
Today; Sylvia and I are up by 8:00 and leave for Rochester by 9:00. We have to stop at Universal Marine and RV to have the hitch adjusted to the correct height. The salesperson gives a walkthrough of the camper explaining the operation of each component. At the hospital Sylvia and I have lunch outside with food from the visitor cafeteria. I call my cousin and talk to her for a while. The three of us will go out for lunch next week. Sylvia walks around the mat with help from PT. The PT person stretches Sylvia out and has Sylvia set up with her legs stretched out in front of her and wiggle her feet and move her left foot. After therapy, I get the camper and bring it home. The van I have to transport Sylvia and also haul the camper has the wheel chair lift installed so the person in the wheelchair enters and exits on the right side. This allows me to tow the camper and easily get Sylvia out of the van. That is a plus. The negative side of the lift opening on the right side is I have to find a parking place wide enough for the lift to open even if I am not towing the camper. But in reality, nothing in life is 100 percent perfect. There is always an adjustment.
I am still working on a wider door for the camper. I called Universal and they are checking with another vendor. I don't know what I will do about a ramp yet. I have checked in Rochester for a ramp that folds up, but it seems expensive. I think I can find one online cheaper. With the ramp it is a matter of room and also length. It needs to be long enough so the incline going into the camper isn't too great, but not too long so that it will be hard to transport and store.
Sylvia has a new PT person today, tomorrow and Wednesday. She seems to know her stuff also. We have a late OT today because the regular person is not here. Julie is taking her place. Before going home Sylvia and I stop at Culvers in Austin to eat .When we get to Albert Lea we stop at home first before taking the camper over to Sylvia's mother for temporary storage in her back yard.
Sylvia has a good night last night she is only up once before getting up for the day. She did not have any liquids before bed and no nap. We are going to try and get on a fixed schedule and see if that helps her nights. Sylvia's mother rides along today and sees Sylvia at her therapy. I talked to PT today. He says Sylvia may plateau out and then come back at a later time for more therapy. He says a lot of people do that; it is like working hard and then taking a rest to recuperate. Sylvia and I have grilled chicken for supper. After eating I push her around the neighborhood.
We are meeting my cousin for lunch at Red Lobster today. Sylvia does well in therapy and sits with her legs straight out and tries to touch her toes. She bakes cinnamon muffins in OT and gives three to the therapist. Jon calls; he might be home this Saturday.
Sylvia slept well last night; she did not get up for the bathroom for over four hours the first time. And then the next time was at 7:00. Sylvia's PT person does not think Sylvia needs either of the braces, so we will have to see.
It is Saturday; Jon came home today. Sylvia walks about twenty steps to the bathroom with my help. We grill hamburgers for lunch and pork for dinner. In the afternoon we go to Sylvia's mothers and see if the ramp will fit on the camper; it does, that is a relief. Jon rents two movies and we watch "Behind Enemy Lines" and "Spy Game". Sylvia did not watch all of "Spy Game" so Jon and she are watching it this Sunday morning. Sylvia walks with just her support stockings on and goes at least twenty steps. I make something new for lunch; it is from a recipe on an Italian spaghetti can. I know Jon wants to get home, but I wish he could stay longer. Sylvia lies down for a while and so do I after dinner; we watch a movie on TNT. My brother calls to say our mother may not make it through the night. At 11:30 pm he calls again; our mother passed away. I feel sad. Earlier last week as Sylvia and I drove to Rochester for therapy; my brother's wife called to say my mother wasn't doing well and wouldn't last long. After I hung up, I pulled alongside of the freeway and cried.
This morning I call the kids and tell them about my mother. Jeff came over for a while before he went to work. I call my brother and get the answering machine. I emailed people on my mailing list about my mom. I talked to Jon and Julie and Jeff and Jason about going to the funeral. Julie wants to go along and Jon will come home and take Sylvia to therapy with Sylvia's mother's help.
I have to take Sylvia to the dentist this morning before going to Rochester. One of her front teeth is hurting. Today Sylvia sees the physical medicine doctor and has therapy. Sylvia walks about sixty feet with help from the therapist today. The doctor is willing to continue therapy for a period of time more. Iris calls to see how we are doing. I talk to my cousin and his sister. Jon comes home about 8:15.
It is morning on Wednesday the 17th of June. Julie is on the way and after she gets here her and I are leaving for Marengo, IL to go to my mother's funeral. Sylvia's mother is coming to help Jon and she will stay overnight tonight. Julie and I leave at 10:10 am for Illinois. We have dinner with my brother and his wife after the wake. After eating, we visit for awhile and then Julie and I go to our hotel room at the Cambridge Inn in Belvedere, IL.
This morning Julie and I have breakfast at a place called the Steam Plant in Belvedere and go to the funeral. My brother and I have had our differences in the past. This is a new opportunity for us to get back together and I am glad. It is a chance to see his children again. After the services Julie and I go to his house and have a hamburger and leave shortly afterward for MN. Julie drives all the way home.
After returning home from Illinois last night, I am taking Sylvia to Rochester for therapy. We stop at Wal-Mart first to buy new shoes for her. Finally; she gets a pair of women's shoes. We have lunch at Arby's and then go to therapy. After therapy I listen to Jason's truck. It is making a noise in the engine compartment. The noise is from the A/C clutch bearing. The bearing needs to be replaced. I will get one and he can help me put it on tomorrow. Jon calls; he got home from our house okay. I appreciated his help.
I bring the new camper to our house and park both the van and camper in front of the house. With the camper attached to the van, they just fit in between our driveway and the neighbor's driveway. At home I get a call, the door is in. Tomorrow I will take the camper back to Rochester to have the wider door installed. Once the door is in we will use the camper at a camp ground in Rochester for a dry run.
The camper door is in and the ramp works. We stay one night at Silver Lake RV Park. Sylvia does well in the camper. For a bathroom I have the commode along. Sylvia only got up once for the bathroom. I think it was because she heard me up. She sleeps until 8:30 and then we get the camper ready to leave and take back to Universal for a water leak repair. Sylvia sees the psychologist and he suggests Sylvia meet with a psychiatrist also. At therapy Sylvia is able to roll over to each side.
It is Monday morning and Sylvia had a hard time going to sleep last night. I gave her a Tylenol PM but that did not do any good so at 12:30 am I gave her an Ambein. That helped and she slept well and is still sleeping at 9:10, but it is time to get up and get ready for therapy. This week is the start of therapy on Monday, Wednesday and Friday. I make a lunch for us to eat and get Sylvia ready.
Sylvia is still sleeping, at 8:30 she gets up for the bathroom and goes back to bed. I want to get a lot done today. Sylvia's mother is here by ten. She helps Sylvia wash up and I clean the house. I wash and vacuum the van, change the oil and filter, plus replace the brake pads. Sylvia has another hard time with her bowels this afternoon; I need to ask the doctor about it again.
I went to Jeff's house and helped him fix his drier. He needs a part. I check with Sears, the Sears Parts Store in Rochester has one. I will get it on Monday. I buy groceries for the trip up north to Alexandria. I took the shower doors off the combination shower/bath tub in our house. I replace them with a shower curtain. Sylvia is going to have a shower at home. It is a little work. I have a shower chair that has two legs on the inside of the tub and the other two legs on the outside of the tub. Sylvia sits on the shower chair and I lift her legs and put them in the tub. I get in the shower with her and suds her body and shampoo her hair and then rinse her off. It worked, but she was a little afraid that she would fall during the transfer from wheel chair to shower chair and back again. After getting dried off, I get her clothes on and she feels clean. I wonder how many other husbands have a shower with their wife for the same reason.
Today I am getting the camper ready for camping at Lake Carlos. We went here last summer before Sylvia had her strokes. I hope it works out. Sylvia has sore muscles and last night her left leg hurt. I called the social worker at Good Samaritan and the nurse at Albert Lea Clinic and also my insurance case worker. I am making plans for when school starts. Sylvia will need day care and therapy at Good Samaritan. It is a sad day for Sylvia and me. No one knows how much pain Sylvia and I have. It is a lot of work taking care of her. I pray that she will continue to improve; she has come a long way. I know that she does not want to go back to day care, but I have no choice. What else can I do? I can't quit my job and I can't leave Sylvia home alone. The future is unknown for everybody, but for us it does not seem very good. I look forward to school because I will get away for a while, but Sylvia can't get away from her problems. They are with her all the time.
It's time to get going this morning; Sylvia needs a shower and I hope her knees and legs are better than yesterday. She slept until 6:00 and then went to the bathroom and back to bed. We have to go to Rochester for therapy today. Jon called last night; Sylvia cried when she talked to him. She feels she is a burden and not wanted, which is not true. Jason is going to mow lawn today. He took off work to go to Lake Carlos. Sylvia cried at OT therapy today because she has to go to day care. Sylvia's mother and Sylvia's brother brings supper for us tonight. Tomorrow is my birthday so I opened my birthday gifts tonight. Sylvia's brother gave me pants and Sylvia's mother gave me a shirt and collectible coins. Jeff and Jason gave me money for my birthday and are here for supper. Sylvia's mother and brother help me put some things in the camper. Jeff is upset tonight; he got ripped off buying a lawn mower from an acquaintance and lost his money.
We are going to camp at a Lake Carlos State Park located about 12 miles north of Alexandria, MN. I finish the packing and then we leave. We stop at Sylvia's mothers before leaving town and the next stop is Rogers, MN to eat, but we ended up at Target to go to the bathroom. To eat, we made a stop at a Subway along the way in another town instead. We arrive at Lake Carlos at 3:30. Julie, Chad, Jon and Jason are there. I don't remember why, but I don't think Jeff was here this year. I set up the camper and then make supper. Julie brings a cake for my birthday and they give me grilling utensils. Jon gives me a hanging bird feeder.
Camping at Lake Carlos
Sylvia sleeps well in the camper and the kids are a great help. I don't think the camping would happen without them; Chad is in charge of breakfast and makes pancakes for us. Later in the day Chad, Jon, and Jason help Sylvia get in Jon's' boat and we go for a ride around Lake Carlos. We make sure that she is wearing a life preserver and she has a good time. After the boat ride the kids help get her get out of the boat and back into the wheelchair. Do I have good kids and a good son in law or what? For the rest of the afternoon the kids go tubing and skiing. Jon is in charge of dinner tonight and he marinates two big chickens for grilling.
The next day is pretty windy, so not much happening with the boat. We spend time at Julie and Chad's campsite after breakfast and grill brats and hot dogs for lunch. We play cards and Sylvia plays for a little while also. She remembers how to play 500. The wind calms down and they go boating for a while. After eating, we have a campfire and all stay up until about 11:30.
It is our last day at Lake Carlos. Julie, Chad, and Jon make the breakfast. The lake is very calm this morning and Chad, Julie, and Jon go for a boat ride. After breakfast they go skiing and Chad is able to ski on one ski. At 1:00 it is time to pack up and go back to Albert Lea. The new camper worked out okay and Sylvia and the rest of us had a good time. It wasn't quite as good as last year, but at least Sylvia was able to go camping. It was something she enjoyed. Jon, Sylvia, and I meet at Quizno's in Alexandria for a sandwich and then leave for Albert Lea at 4:00. As we are driving on I-94, Julie and Chad catch up and pass us twice, once because they left after we did and they can drive faster, and once because they stopped for gas. Traffic was very slow after we got to Rogers, but then picked up again later. I had to make a stop at Ellendale for gas before getting home at 8:50. Jason helped me unpack some of the stuff from the camper. I will finish tomorrow. My cousin told me about a place west of Albert Lea where I could store the camper. I check on it and I am able to store it there. It wouldn't work storing it in Sylvia's mother's back yard. It would take up to much room.
Sylvia wakes up at 5:00 and goes to the bathroom and then back to bed and sleeps until 9:30. I think we are going to have to start getting up earlier because soon I will start school and we will have to get up early for her to get to daycare and me to school on time. Sylvia's knee gives out and she almost falls on the floor. I got her on the bed before she fell all the way. It was a close call. She helps fold clothes and I try to give her a little therapy on her left arm. I call a friend of mine from when I worked at Dave Syverson Ford. I am meeting him tomorrow at the American Legion at 12:30.
I call the social worker at Good Samaritan; Sylvia and I will meet her today at 3:00. I clean and vacuum the floors this morning. When we get to Good Samaritan Sylvia starts to cry because she does not want to spend her days there. I am a loss as what to do. I don't know of any alternative. After Good Samaritan, we stop at HyVee and get groceries. For supper I make a hot-dish with some of the chicken Jon brought to Lake Carlos.
I meet my friend at the American Legion today; we have a good time remembering the past working together. Before going home I go to school and check my mail. Jeff comes for supper and after supper a friend comes over to look at the camper and visit.
Sylvia is having a bad day and her knees hurt. On Monday next week we will go see a doctor about her knees.
We have a long day today because Sylvia has to see the psychologist at 4:00. We will probably eat out tonight. I am tired. We get done by 5:00 and then leave the hospital by 5:45. Julie calls and says her sister in law had her baby and everything is all right. We watch TV at home and that's all for today.
Today is one year from when Sylvia had her first headache. We don't do much today. Sylvia is tired. I buy groceries and Jason stays home with his mom. I make a roast in the crock-pot. On Sunday Sylvia and I get up and Sylvia has a shower. We go to the contemporary service at church and then out for lunch. After lunch we go to the show "Signs".
Sylvia has a doctor appointment to check her knees today. They X-ray both of them and suggest an injection of Synvisc. It is supposed to help. Sylvia will need three injections three weeks apart. When we get home Sylvia's knees are sore and she lies down for a while.
Today Sylvia is seeing a psychiatrist at the Mayo Clinic. He thinks he can help Sylvia get more mobility and wants to see us again on September 6. Sylvia's knees are sore again today after her injections on Monday. She does not do well at PT today. We stop at Fazoli's before going home. Jason and Jeff want Fazoli's for dinner, so I buy a couple of meals for them.
Today we leave for Rochester early and Sylvia sees her doctor. Today will be her last therapy session at Mary Brigh. Sylvia is tired and sleeps almost all the way home and then has a nap at home. There is a humming bird drinking from the bird feeder out our porch window. Jeff comes over and talks with Sylvia for a while. Tomorrow it begins, I have to go to Austin for school and Sylvia has to go to daycare.
Chapter Ten: Adult day care and therapy at Good Samaritan in 2002
It is Friday, August 23rd; School will start on Monday. Today I have to be in Austin for a school in-service. Sylvia will go to daycare at Good Samaritan and also therapy. Later when I get her, she tells me they forgot that she was in the bathroom. The therapy isn't the same as St. Mary's, but I think it will help. Sylvia has another injection in her knees and it seems to help this time. There is a tornado watch for our area and so we can't leave the clinic until it is over.
A neighbor is coming over to help with the house cleaning. Earlier she had asked me if there was anything she could do to help me out at home. At first I was reluctant to receive help. I thought I could handle all the house work and take care of Sylvia by myself. After thinking about it I realized that I might be wrong in not accepting help. The person doing the volunteer work would have a feeling of satisfaction by helping. So it would be a double benefit plus I was wrong; I needed help. She will come over once a week for an hour and do various jobs around the house. She would vacuum the carpets or washing windows. Various church members are also helping. They take turns bringing a meal for us one night each week. It is a big help, I have one night a week that I don't have to think about what to make for the evening meal.
Today is Sylvia's brother's birthday and also one year from when Sylvia had her surgery and stroke. It is the last day of daycare this week. Sylvia says she watched people play cards and the next time she will play also. She said the therapist gave her a compliment at therapy. They have a special harness that they are trying so she can walk better. Sylvia calls her brother and wishes him a happy birthday. On Sunday, Sylvia's mother and brother come over with food to celebrate Sylvia's brother's birthday. We give him two t-shirts and a case of Old Milwaukee beer. The beer sounds weird I know, but we didn't know what else to give besides cash. The heater core is leaking in Jason's truck. I went to the hardware store to buy a short piece of pipe to splice the heater hoses together and by-pass the heater core. Know he can still drive his truck until the two of have time to replace it.
It is getting harder to get Sylvia ready each morning. With her bad knees it is more difficult for her to stand with my help. Almost every morning during the week Jeff is over to help me get Sylvia ready for daycare. Jason is living here with us, but since he leaves for work before Sylvia needs to be up he can't help. I talk to my Dean at school and ask her if I can change my teaching schedule. I would like to lengthen Monday through Thursday teaching days so I can have Friday off. This will save money and keep Sylvia home from day care one day a week. She will need to ask the students if the schedule change is okay with them. The students agree and on Friday Sylvia stays home with me. It also gives me time to do things I need to do at home. Plus the students have an extra day that they can use at a part time job. That helps them with their financial load.
Our son Jon works for a Public Broadcasting TV station. Every year there is a fund raising competition amongst other PBS stations using the Red Green show. This year the small PBS station in Appleton, MN where Jon works beat out the big Iowa PBS system. The winning station will have a celebrity from the Red Green show come to a private showing of the Red Green movie "Duct Tape Forever" The movie showing will be in the small town of Benson, MN. Sylvia and I are going to see the movie; Jon is getting tickets for us.
Sylvia has an appointment with the psychiatrist today in Rochester. He has ideas for Sylvia and wants her to see another doctor to check all her medications. I make an appointment for Sylvia to see doctor Thielen on 9/19. Sylvia has seen this doctor before. Today she has appointments with two doctors on the same day. There are not a lot of changes for Sylvia's physical condition. Her progress is so slow that I really can't see any improvement. Sylvia and I get our haircut, eat at Applebee's, and shop in the Apache Mall.
Sylvia finds a picture she likes and we buy it; maybe the kids can give it to her for Christmas. After the mall we pick up the camper and drive home, but first I have to go back to the mall and get the picture I forgot and Sylvia needs to use a bathroom. Before going home I stop at Jeff's house to light the pilot light for his water heater.
It is Saturday and Jason and I are installing the new heater core in his truck today. Sylvia's mother is inside the house with Sylvia. We are doing the work on his truck in the driveway. It is a big job, but it goes well and does not take as much time as I first thought. As you can see by the picture, the instrument panel must be moved away from the heater plenum assembly to gain access to the heater core. Afterwards Jason and I take the camper to winter storage. I go back home, Sylvia and I take Sylvia's mother home and then go buy groceries. We are going on a picnic with friends at 5:00 tonight. Sylvia and I have a good time at the picnic and the four of us talk about old times. Sylvia and her friend worked together doing hair. Plus we used to spend a lot of time together playing cards and camping. That has all changed now; we don't see them much anymore. Nothing lasts forever. We leave for home at 8:00.
Replacing the heater core on Jason's GMC Sonoma
It is Sunday; we are up at 6:00 and leave for Jon's house by 6:40 am. We stop in Sleepy Eye for breakfast and bathroom and get to Jon's house in Appleton by 11:45. We have lunch at a local place called Shooters, go back to Jon's and then to Benson and wait for Red Green to come. We get pictures and at 3:30 we watch the movie "Duct Tape Forever". After the movie we drive to Mankato and eat at Zanz, a local fast food Mexican restaurant. We are home by 9:45 pm and tired.
Sylvia & I with Red Green
Today is Wednesday September 11th (911); one year from the World Trade Center tragedy. Jason has been sick the last few days and has stayed home. Jeff comes over and takes Jason to the urgent care. I have to go to school and Sylvia is at day care. When I pick Sylvia up today I ask her about her day and she says they felt she did good at therapy. Good Samaritan is checking with the insurance company to see if the therapy can be extended. Sylvia's memory seems to be better to me. She can remember many things about the day. When she is either in bed or sitting in the recliner the pillow behind her neck is a pain to get right. It makes me crabby and I shouldn't be.
Sylvia has an appointment in Rochester with her doctor that she had seen before all this stroke stuff happened. Jeff comes over to help get his mother ready. At the clinic; she has a chest X-ray, EKG, and blood test. We will have to go back for the results. Jason won a wild life print showing pheasants during the winter looking for food around an old farm place. He gave the print to his mother. We took it to Hobby Lobby and they are making a frame for it. We will hang it in our porch.
Today Julie is having a baby shower for her sister in law. Sylvia and her mother are invited so I take them. They have a good time. Chad and his dad, his brother in law, and I work on his patio door while the ladies are at the shower. Rain water has rotted the threshold. They are going to contact the realtor to see what can be done. Sylvia's knees and legs are sore again today. It is hard for her to stand up and transfer from the wheel chair.
Sylvia is constantly plagued with constipation. It was suggested by a doctor that Sylvia try the new fiber laxative called Benefiber. After trying it for a few days it works. I am having a sad moment tonight; this whole situation is overwhelming at times. I hope Sylvia's knee pain will get better soon. Both of us are tried tonight. We watch the new West Wing and fall asleep before the end. Something from watching the West Wing must have triggered it. Sylvia and I both are sad and Sylvia says she is glad she did not die even if it is a lot of work. So am I.
Sylvia and I get up and go to the second service at church. I think it was good for both of us. I think Jason and Jeff have their own moments of brief depression, but today they are in a good mood. Later in the afternoon; Jason and Jeff take the seat that had to be removed from the van to make room for the lift to Jeff's house for storage. Jeff is having his birthday supper here tonight we will have Tacos.
Tonight I am tired and crabby and Sylvia is upset with me because I tell her I want a little time to myself. She is watching the movie "First Wives Club" and I am watching Law & Order. Later I go into the living room and the TV screen is blue, the movie is over, Sylvia did not call me because she was going to leave me alone. Life is tough for us I shouldn't have said anything but I get overwhelmed at times.
October 1st Jeff's 29th birthday; After daycare we go to the doctor for a check up on Sylvia's knees. She receives another Synvisc shot and a sample of Celebrex to help with her knee pain.
We are going to Rochester today for a medical appointment. We meet Jason at noon for lunch, later to Hobby Lobby to pick up the framed print. The next stop: the Baldwin building for Sylvia's appointment. All Sylvia's blood work is good. The clinic did not send us an appointment to see the cardiologist so I did not know Sylvia was supposed to see one. We have to come back another day.
I gave Sylvia a Celebrex this morning to see if that would help with her knees and hip. The Celebrex seemed to help. At home from Good Samaritan, Jeff and Jason stop for a while and Jon calls. Jeff is having problems; Jason is having trouble at work; Jon had his back door broken early one morning. Julie calls; Chad's dad has had a mild heart attack and is in the Albert Lea hospital. What a life we have; it seems like this family has more than its share of problems. Sylvia fell asleep in the recliner and me in the other recliner. Jason gave Sylvia her 8:00 pills and at 9:30 we are in bed.
Sylvia and I have to be in Rochester by 12:30 for her echocardiogram. Sylvia tries to have a bowel movement before we leave, but can't go. We leave for Rochester at 11:20; I think we will be late for her appointment, but we arrive on time. After the test we eat a late lunch at Wong's. While Sylvia is eating she has some trouble swallowing her food. I think she is choking but finally is okay. It was a tense moments for awhile. Choking scares me because I am not sure I could help her especially with her being in a wheel chair.
I am up at 7:30 and get a shower and get Sylvia up so we can go to 9:30 church. After church we go to Shopko to buy a get-well card for Chad's dad. Sylvia says her right hip is sore and she cries on the way home. At home she takes a nap from about 12:30 until around 4:00. We are going to church at 5:00 tonight for an October Fest meal. The October Fest is a meal that our church does for a fund raiser. They serve German food and usually serve about 700 people.
Sylvia will have to go to daycare today. I have a National Automotive Technician Education Foundation (NATEF) meeting in Mankato. NATEF certifies automotive programs. http://www.natef.org/ The automotive program I teach is certified, which means that Riverland's automotive program has passed a series of requirements that prove the curriculum meets industry standards. The process to receive certification is quit involved and the certification only lasts five years. To be recertified, the program must have a review before the five years are up. After I get back from Mankato I take Sylvia and Sylvia's mother to Julie's house for a Tupper Ware party. Jon meets us there and Jon and I go to the Burnsville Mall for a while. When we leave, Maddison rides home with Jon to stay overnight with us.
Maddison slept with me last night. Jon makes eggs and ham for breakfast. Jeff and Jason are here. Julie gets here around 12:00. Tonight we are going to the Seventh Rib to celebrate our 35th wedding anniversary. Jon rides with Sylvia and I, Julie will take Sylvia's mother, and Jeff and Jason ride together. Ethan is having a bad night and doesn't want to cooperate and sit still. During the meal Julie has to take Ethan outside.
Monday, October 21st, our 35th wedding anniversary. We have soup and sandwich for dinner. Sylvia is watching TV and I am doing schoolwork. It is not a great celebration.
Tuesday the October 29th; the doctor Sylvia sees wants Sylvia to taper off the Baclofen. It can cause fatigue. We should increase the Celexa by one and one-half. At 9:30 we have an appointment with the heart doctor. We talk with his nurse and then the doctor. Sylvia's heart is doing great. The heart surgery worked but the other results (stroke) are not too good. (I knew that.) We meet my cousin at Red Lobster for lunch. We are back home by 5:45, Sylvia and I are tired. Looks like someone raked the lawn for us; probably our neighbor. We both sleep for a short time and then watch TV and are in bed by 10:15. I find out the next day that our neighbor raked the lawn; the next time I see her I will thank her.
Election Day; I stop and vote before taking Sylvia to Good Samaritan. Later that evening we watch TV and the local election results. Grace Schwab loses as well as Walter Mondale and Roger Moe. Jon and a coworker stop on their way for training in Des Moines.
Sylvia has an appointment at St. Mary's. When we get there I look at the schedule and we did not need to be there until 9:00. We go to the visitor cafeteria for a while. Then we wait by the pharmacy and see a person that we recognize from St. Marks. His wife is here at the hospital. At 1:00 Sylvia sees her physical medicine doctor and receives good reports. Not much has changed though; we will see him in another three months. He schedules an appointment with neurology and an ophthalmologist for 12/6/2002. Sylvia will use 5 mg of Baclofen once a day until 11-15-02 and then have the therapist watch for muscle spasms. If needed start 5mg of Baclofen twice a day. Sylvia's brother stops over to talk to Sylvia about Sylvia's mother's birthday.
Tuesday, November 19th Maddison 6th birthday and Sylvia's mother's birthday; Sylvia's mother is visiting Sylvia today. Later Sylvia and I call Maddison to wish her a happy birthday. We celebrated Sylvia's mother's birthday last Saturday at our house. There isn't any way to get Sylvia into her mother's house. The doors are too narrow and the steps are too many to lift a wheel chair up and down again.
Saturday, 11/23 Sylvia and I pickup Sylvia's mother and go to Maddison's birthday party. We have a good time and don't get home until 9:30. Sylvia; like any grandmother; enjoys being with her grandchildren. When we get home Sylvia is tired and we go to bed after watching the Red-Green show.
Thursday, November 28th Thanksgiving Day; We are going to the Holiday Inn in Austin for their brunch. Julie and Chad will meet us there. Sylvia's mother rides with us because her son is sick and staying home. After the brunch, Julie and Chad come to our house for a while before going home. Jon and I decorate the house for Christmas with Sylvia's help. She picks the decorations out of the box and tells Jon where to place each one. We put the lights on outside of the house also.
Sylvia decorating for Christmas
Friday, December 6th; Jeff comes over early because he forgot that today is Friday and his mother stays home from day care. It is 6:45 am and Sylvia is still sleeping. We will have to leave by 9:15 today for Rochester. Sylvia's first appointment is with sight doctor. He thinks Sylvia will stay at this level of sight. I tell Sylvia that she can see well and this should not make her sad. Jason calls and then Sylvia and I meet my cousin for lunch. At the next doctor appointment; he says that the brain stays plastic for three years after a stroke. He thinks Sylvia can improve more, but needs to do things that stimulates the brain. He thinks Sylvia should start piano lessons. We have to see this doctor again in three months when we come back to see the physical medicine doctor. I have doubts about all this information.
Saturday, December 7th; Ethan's second birthday was on December 3rd. Julie and Chad are having his birthday party today. We leave the house at 9:30 and pick up Sylvia's mother. We stop at the new Super Target and do Christmas shopping. Sylvia is having a bad day with her knees again. We get to Ethan's birthday party at 2:30. We have a good time and stay until about 7:20. Sylvia needs a bathroom on the way home so we stop at a Kwik Trip by Medford.
Ethan at his birthday party
Sylvia knees are still sore; Sylvia may need to have surgery if the pain doesn't improve. Sylvia fell this morning; her legs where weak; it was a slow controlled fall. I couldn't keep holding her up. She didn't get hurt but she is too heavy to lift and she can't help get herself up either. I called Jeff and left a message; then I called a neighbor and she came over. We couldn't lift her either. Jeff came and the three of us lifted her into the wheel chair. What a stressful morning. This neighbor has done a lot for us this past year. To show her our appreciation Sylvia and I by her and her husband an Applebee's gift certificate. It is a small thank you for all the help she has given.
Since our children are now adults; birthdays are not treated the same as when they were little children. It is a natural thing, but now more than ever birthdays are not the same. Sylvia was the one who made the celebrations better. When Julie and Jason were children and being born so close to Christmas; Sylvia and I tried to keep their birthdays separate from Christmas. It was a lot of work to have separate birthday parties for each one but worth it.
Julie was born on December 23rd. Sylvia and I are going to take her out for lunch. With tomorrow being Christmas I want Sylvia to look nice so I call Station One at Good Samaritan to see if Sylvia can get a bath tomorrow. She can. Before leaving town we stop to get Sylvia's mother and meet Julie, Maddison, and Ethan at Red Lobster in Burnsville to celebrate Julie's birthday. It was fun to be with Julie and the grandkids.
Eating at Red Lobster
Jason was born on December 24th. Jason helps me with Sylvia this morning. Sylvia is going to daycare to get a bath and therapy. I am going to school for a while and then do a few things before getting Sylvia. We go to 4:00 church; Jeff and Jason don't go but Jon does. After church we make some food and then open gifts on Christmas Eve for the first time in 33 years. Jason will open his birthday gifts as well. Jeff goes home around 9:00 and we watch the movie Spiderman.
Christmas Day; Most everyone is sleeping late but me. About ten o'clock they start to get up. I am making baked corn for the meal. Sylvia's mother and her son are coming over at eleven with the rest of the food. I invited my co-worker at Riverland and his family to eat with us also. We have a good dinner and also a nice visit. After every one leaves Sylvia, Jon, and I sleep for a while. We have supper, watch TV and go to bed around 10:00.
This morning we are going to Julies to celebrate Christmas with them. Sylvia's mother is riding along. We will stay overnight. We stop at Cabela's to buy gloves for Jon; Sylvia buys a bear for Ethan also. We get to Julie and Chad's around 4:00. Jeff is already there and Jason gets there around 6:00. We have a good time. We have a Christmas meal there and open gifts after dinner. We play cards and Sylvia is able to get into the game a little by looking on with Jon's cards. We go to bed late, almost midnight.
New Years Eve; Sylvia goes to daycare for therapy and a bath. I go to school and get ready for the next semester. Later in the evening Sylvia and I go to Applebee's for our New Years Eve meal. The place is packed. We have to wait to be seated, but it was fun. When we get home we watch Jay Leno and go to bed around 11:30.
Chapter Eleven: Leading to respite in 2003
New Years Day; What will the New Year bring? I am sure many other people ask themselves that same question. Sylvia watches the Rose Bowl parade and we take a nap in the afternoon. Later I pick up Sylvia's mother for supper.
Saturday February 1st. A national tragedy happened this morning; the space shuttle Columbia disintegrated on its flight path over Texas. At 2:00 this morning Jeff calls and says he is sick. I wake Jason and he goes over to his house and brings him here. Jeff is throwing up and has the diarrhea. Sylvia is not well either and she is weak. It is 8:30 and Sylvia and Jeff are still sleeping. Jeff had a rough night. If everyone feels well enough we might go to the Northbridge mall and visit the annual toy show today; otherwise we will go tomorrow.
It is early morning and I am writing in my journal. I don't think anybody really knows what Sylvia and I go through except our immediate family. I wonder how long I can take care of her at home. I don't want her to go to a nursing home. I am concerned about this pain in her right side and the way her feet feel at night sometimes. The bowel problem is another one to worry about. It seems like our future is very uncertain. I need to ask a lot of questions next Friday when we see the doctors in Rochester. Sylvia will be at daycare today and have a bath. I know she does not want to go to daycare, but what can I do? I need to work. When we are out amongst people, it may seem to them that life for us is going well. Well it is not! I have to stop journaling now and get Sylvia up and ready. Jeff should be coming soon. He is a welcome help in the morning.
Valentine's Day will be here soon. After daycare Sylvia and I go to Shopko to buy valentine cards. We have to use the bathroom at the mall and what a job that was. Even bathrooms that are labeled Handicap Accessible don't accommodate our needs. After that we go to Hy-Vee for flowers for Sylvia's mother. I get cash from my bank's ATM and pick up a pizza from Godfathers for supper. It is 6:20 pm. Sylvia is watching a dog show on USA and I am doing my journal. Next it is the dishes and then I make out the valentine cards.
School is closed at 2:00 today; the weather is turning bad with lots of snow and blowing snow. Before getting Sylvia I stop at the post office and then go home to shovel. I buy groceries at Rainbow Foods and pick up Sylvia and bring her home. Tonight we will have Lasagna. Jeff and Jason are going to be here to eat. Jason has a room in the basement. Tonight he is rearranging the furniture and vacuuming the part of the basement where he has his room. Jason, Jeff and I reminisce about when they were little and we would sit in the basement with a fire going and watch TV. One of the shows we would watch was the Dukes of Hazard. It's fun to remember the good times. Sometimes it is sad to think about the past. I don't think we enjoyed those times as much as we should have, but hind sight is always 20-20. I think we always look back and wonder if it could have been better. Oh well! I am doing the dishes and Sylvia will probably watch TV. JAG is on. Jon calls and talks for awhile. We are making plans for Sylvia's birthday party.
Sylvia slept all night last night. I thought she would be up since she had a nap yesterday afternoon. It is a bath day for Sylvia, so I need to get her clothes ready and get myself ready for school. Jeff is over again this morning helping. Tonight after I pick Sylvia up she tells me about her day at daycare. Her breakfast was messed up; the aid put chocolate milk in her oatmeal; lunch was cold and she had trouble getting someone to help her go to the bathroom. In my opinion a certain nurse should not be working there. She acts like she wishes she could be somewhere else. I wish she was. Our neighbor comes over and vacuums and dusts the upstairs. Sylvia's mother and brother stop and bring valentine stuff but don't stay long. Sylvia is lying down.
Valentine's Day; One year ago today Sylvia was admitted to Good Samaritan. Looking back what a year it has been, like a roller coaster with many ups and downs. Sylvia has done well though and made a lot of improvements. I wonder where it will all end. What a life! Well today we go to Rochester and see three doctors.
The physical medicine doctor wants to see Sylvia in about three months and have OT and PT also see her. The neurologist thinks Sylvia has improved but not significantly like we all hoped for. The other doctor wants Sylvia to learn how to surf the internet within the next three months. He thinks our life will get better. I think the neurologist is the one who is most correct.
A couple of these doctors think Sylvia might do well at Sister Kenny with the restricted therapy. The OT person told us to contact the College of St. Catherine also. She went to school there and told who to contact. We were going to eat out for Valentine's Day, but the weather has turned for the worse. It is snowing pretty hard and Jason called and said he is going straight home also.
Julie calls to say they lost their judgment on the threshold of their house. They were trying to have the builder of the door pay for the repair. Iris and Gary stop in and bring mini pizzas for all of us to eat. They stay until 3:00 and then Sylvia lies down for a while and I make dinner. We stay up until Red Green comes on and go to bed after he is over.
Presidents Day No school; To whoever reads this I just want to say I am tired. Tired of it all; washing and folding clothes, getting the medication ready, making meals, cleaning the house; it is a big job. I dusted all my cars on the shelves in my office area. They were dusty, probably haven't been dusted for more than three years. Jason comes home early from his job and Jeff comes for lunch. I make hamburgers for us.
Today I wake up at 5:00. I can hear Jason taking a shower. I lie there and fall asleep until 5:44 one minute before the alarm will go off. I get up and shut off the alarm get my clothes together and then go to the bathroom and listen to the radio for a while. I brush my teeth and then take a shower. It is now 6:05. I go downstairs and get my clothes to wear. I check to see if I should start the laundry but there is not enough today, but tonight there will be Sylvia's clothes because she will have a bath today. 6:20 I get Sylvia's medication ready and unlock the back door. Jeff will be here soon. At 6:30 I get Sylvia up and she goes to the bathroom. Then I get her dressed and Jeff gets her tooth brush ready and I put her stockings and shoes on. The stockings are support stockings and hard to get on. We are out of the house by 7:00. Jeff wheels Sylvia out to the van and locks the wheel chair down and then goes back in the house to lock up and we leave for Good Samaritan. I make one stop at Bagels & Beans for coffee and a roll. We arrive at Good Samaritan at 7:15 and I take Sylvia in and help get her coat off and kiss her goodbye and leave for school. I arrive at school at 7:25 and get ready for class right away at 7:30. The school day usually goes good. At 11:15 I eat lunch and make copies for the next day. At 12:00 class starts again and last until 3:00. I try to do stuff for the next day before leaving to get Sylvia at 3:45. After getting Sylvia we head home most nights and then I take Sylvia to the bathroom and start dinner. Sylvia usually watches TV or looks in a magazine. Tonight she looked at the National Geographic. After dishes are done I work on the computer doing school stuff or entering journal information. We watch TV together and at 10:00 it is time for bed. Tonight I start two loads of laundry. I should sweep and scrub the floors but I going to wait until tomorrow night. I have to move the van and put it in the garage now. The next day it starts all over again.
It is another day, the same as yesterday. Tonight I am making pork with rice like Sylvia used to make. Sylvia makes a statement to me; "I hope you don't stop loving me" "I won't" I say. It breaks me apart. Supper was good and Sylvia and I watched JAG.
I leave school and pick up Sylvia so I can go to a caregivers support group meeting at St. John's Lutheran nursing home. Sylvia goes to an activity area while I am at the meeting. St. Johns is opening up an adult daycare next month. After the meeting I tour the daycare area and it looks good. The problem, I would have to rearrange my school schedule for it to work here. I don't think that will happen.
A couple from church brings dinner tonight; the food was good. Sylvia's left knee is still sore tonight. Sylvia and I watch TV and fall asleep before Without a Trace ends.
It is Saturday and Jason helps me get Sylvia into the van. The local VICA club (Vocational Industrial Club of America) at Riverland is having a car wash and I am getting the van washed. I plan to stay at school a while and do school work. I also work with Sylvia on a computer and she plays the solitaire game. I don't think Sylvia will be able to do much on a computer. With her vision being faulty and the problems she has using her left hand I just don't think it will happen. We have pizza at school and come home at 1:15. Sylvia wants to lie down and I do more school work. Later in the evening we watch the Red Green show on Iowa Public TV and a comment is made about last year when the little PBS TV station in Appleton beat them. I felt proud of our son Jon.
I think I am at the bottom lately. Last night I didn't feel well and still don't this morning. I got up and got a sleeping bag to cover up with. I was cold and ached all over. At 7:20 Sylvia called and I helped her go to the bathroom. I had trouble getting her back into bed and I almost dropped her. Her left knee is acting up and she can't hold herself up. I can't lift her either so it was a battle, but I finally got her into bed so she can rest for a while. I can hardly take any more of this and yet I don't want Sylvia to go to a nursing home. I feel like a failure and yet I am not. Jon can't come home and we miss him. He was going to come this weekend but he has to work. Julie and the kids where going to come this weekend but Maddison has been sick all week and stayed home from school. We want to see Chad also but he is working a lot. Jeff comes every morning so we get to see him and Jason is here at night most of the time. Where will this all end? Sylvia's mother helps us a lot also, but Sylvia's brother, well I don't know, I just don't know! I am going out on the porch and watch the TV show CBS Sunday Morning. I like this TV show. It has a varied format and Bill Geist always has an interesting story to tell. I turned the kerosene heater on so it should be warming up out there. I call Jon and tell him about the Red Green IPTV comment. He talks to Sylvia for a while. Jeff and Jason are going to Mankato to take back a DVD I broke. They are stopping at Zanz also. I am not feeling well so Sylvia and I both lie down for about three hours this afternoon.
Sylvia woke up at 3:00 this morning and needed the bathroom. When I got her up she had a bad spasms in her left leg again and it was good that Jason was home to help me. The spasms were not quite as bad when Jeff came at 6:30. I called our local doctor but he was not in and won't be in until Thursday. The nurse said to increase the Baclofen and contact them on Thursday if need be, or come in if it is worse. When I pick up Sylvia from daycare she is lying down and the aids are having trouble helping her because she is having another spasm. I called Marva to see if she could stay with Sylvia for about an hour so I could go get groceries and she said she would. At home I took Sylvia to the bathroom and then called Marva. She stayed until Jason came home and that helped. We had Tacos for dinner tonight. Sylvia is watching JAG and I am doing school work. I received an email from my brother today. Today is his birthday. Later I called him and we had a nice visit.
Julie calls and says Ethan needs speech therapy. I feel sad while talking to her and start to cry. After I hang up and wake Sylvia; I am still sad and can't help but cry. I feel sad that Sylvia can't do those things that she used to do. Sylvia and I watch TV and I forgot to bring the van into the garage. Sylvia has trouble with her left leg again tonight.
Sylvia is up at 8:00 and stays up. We have breakfast and go out to school because I have a meeting with my Dean. After school we pick up Sylvia's mother and go to Bagels & Beans for lunch on Sylvia's mother. We go home and Sylvia's mother stays with Sylvia while I get my tool box from Sanderson Repair and deliver it to school. I straighten out the drawers a little and then go home. Hallmark at Northbridge calls to say Sylvia's Cherished Teddies figure is in. I go pick it up and stop and see Iris with a Good Samaritan daycare bill. The benefit money is almost gone. At home we get ready to celebrate Sylvia's 56th birthday at Applebee's in Owatonna, MN. Julie and Chad and the grandkids, Jeff, Jason, and Sylvia's mother are going also. On the way out of town Sylvia's leg acts up so we stop to make it better. We have to wait a little while for a table even though I called ahead for quicker seating. We have a good time and all enjoyed ourselves. Maddison is coming home with us. She will ride with Jeff and Jason. Before we can leave town Sylvia's leg acts up again and it takes a while to get it so she has no pain. We get home at 9:00 and Sylvia lies down in bed and Jeff takes Sylvia's mother home. We watch a movie with Maddison and go to bed at 11:00.
Maddison wakes me up at 9:00 and I make waffles for breakfast and give Sylvia her medication. Maddison and Sylvia do drawing, writing, and coloring after breakfast. Jason stays with them while I go check out ABC Seamless for new eves on the house. They are having an open house with 30% off the price. Sylvia and I are having a good time with Maddison here. After dinner we watch Indiana Jones and go to bed at 9:50.
After breakfast I call our doctor to tell him about Sylvia. He says if the cramps get worse, to increase the Baclofen. Sylvia is lying down and sleeping when Chad comes to pick up Maddison. He does not stay long. I worry about Sylvia when she sleeps like this. I wonder if she will die in her sleep. Sometimes I think it would be a blessing and yet I don't want her to miss out on events in her grandchildren's lives. It is a double edged sword, cutting both ways at the same time. This last week Sylvia has been in a lot of pain with muscle spasms. Her left ankle and knee are swollen, but I think they are down today. I worry about how long I can take care of her at home and I don't want her in a nursing either. I know I had expressed concern about that problem before. As time moves on I think the nursing home might be good for a break from all this. What a dilemma! I am thankful for all the things Sylvia is able to do and participate in. On the other hand there is so much she is missing out on. Being able to sleep with Maddison, read a book, get around without help, and go to the bathroom; just about everything all the rest of us take for granted. These are the things that drive me crazy with grief. At least the bowels are working so far. There are days that I am so sad about all of this I could just cry, and I have. Tomorrow is school and a bath day for Sylvia.
The doctor never called last night. Jeff calls this morning and says he is not coming. He does not feel well. At Good Samaritan, I tell the nurse Sylvia gets a Baclofen at 2:00. When I pick up Sylvia in the afternoon, her medication wasn't given to her, even her morning medication. I will have to tell them tomorrow. I call Jason to see if he and Sylvia's mother will stay with Sylvia tonight since I have a Snap-On meeting on their new automotive computer scan tool at school. Everything goes well and I go to Snyder Drug, the post office, Wal-Mart, and get gas before I pick up Sylvia's mother and leave for school. Sylvia had no problems while I was gone.
Sylvia goes to the orthopedic surgeon this afternoon and I hope we can get answers. We went and the doctor wants Sylvia to try Valium to see if that will relax her left leg muscles. It is Ash Wednesday and Sylvia and I go to church. When we are in the van and starting to leave Sylvia's left leg acts up and it takes me a while to relive to spasm. We have dinner and Sylvia lies in bed. We watch TV between the spasms which come every half hour.
Thursday 3/06: Last night was not a good night, Sylvia has a lot of spasms and I try to sleep in the recliner off and on. Sylvia gets up at 1:30 to go to the bathroom and then finally sleeps without any spasms. I get up close to 5:00 in the morning and do a little journaling. I don't know if we will go to Julies tonight or not. I am going the doctor today to have a couple of toe nails taken off.
I was going to wash clothes and I discover the washing machine won't work. I go to work and call Jason later to see if he will take the clothes to Sylvia's mother to wash and dry them. He does and Sylvia and I decide to go to Julie and Chad's tonight. I come home after my toe surgery and pack up. I go back to school and finish correcting homework and go to pick up the clothes from Sylvia's mother's house. Some of the clothes are not dry. I'll hang them out to dry in the basement at home. We get to Julies at 6:30 pm.
Sylvia has a pretty good night with few cramps in her left leg. We have breakfast and when Chad comes to help we go to Sister Kenny for the evaluation. Sylvia's cramps hurt her evaluation which is normal. I was expecting that, but the therapist told us that she would be a candidate when the spasm problem is fixed.
She told us a couple of doctors to try who are very good with spasm problems and another place that could help with Sylvia's eyes. So I will try and get referrals to them. We go back to Julies and Sylvia sleeps for a while. Chad comes home for a short while; he is working tonight.
Julie goes to Home Depot for electrical supplies and I help Julie and Chad put in new switches and outlets. Sylvia sleeps for a while in the afternoon. We watch the movie "My Big Fat Greek Wedding" and all of us enjoyed it, even Maddison and Ethan. Julie makes Lasagna for dinner and then we are in bed by 10:15.
Sunday I am up by 7:15 and Sylvia is up by 8:15. We talk with Julie and have crying moments and then get ready to go home. I call Jon on the way home and talk for a while. At home Sylvia is tired even after sleeping almost all the way home. She lies down for a while and I check out the washer and find out what is wrong. Jason helped me get Sylvia in the house and went over to Jeff's to watch the NASCAR races. Church people call and will bring food over tonight, so I don't have to make any food tonight. Sylvia wakes up at 4:30; she was tired and looks better. Sylvia's mother calls and says the clothes are done and I can come and get them. It would be nice if Sylvia's brother could do something for Sylvia sometime, after all Sylvia is his sister. If the situation was reversed Sylvia would do a lot for him. Oh well! Sylvia and I are watching TV and will have dinner soon.
Sylvia still has the cramps and pain in her left knee. At school I check with a person who does appliance repair about a part to repair the washer and he has one and tells me a simpler way to do the repair. I get Sylvia and we go home. After I take care of Sylvia I fix the washer and then we order pizza for dinner. I clean the floors and vacuum the laundry room before the pizza comes. It is almost 8:00 before I set down. At 8:00 Sylvia is watching a Walker Texas Ranger movie and I read the paper. I put the paper down and rest a little the next thing I know the time is 10:45. Sylvia and I both slept; me more than her. Sylvia goes to the bathroom and then we go back to sleep. I sleep in the recliner to be near Sylvia if she has a cramp.
I forgot to tell Good Samaritan that Sylvia had a doctor appointment today. Actually I thought it was later in the day. Sylvia's mother is there and she has to wait for the bus. She probably isn't very happy with me. I can't remember everything to tell everybody.
A doctor from ALMC is going to refer Sylvia to a doctor at United Hospital in St. Paul for her leg spasms. Sylvia and I go to the Lenten service at church tonight and after church we stay for dinner. The main eating area is in the basement and so is the kitchen. There isn't an elevator for people in wheel chairs to get to the basement. We are eating in one of the rooms on the main floor. A church member brings the food to us so I don't have to go down stairs and get it. That was nice of him.
We come home and Sylvia gets a very bad spasm in her left leg and it takes a while to relieve the pain. She lies down and watches TV. I am going to do dishes and maybe stay awake to watch Law and Order.
Well I and Sylvia did not make it to the end of Law & Order last night. Tonight we want to watch "CSI" and "Without a Trace"; maybe we can stay awake. Sylvia is still having pain in her leg behind her knee above the calf. I am going to make an appointment with the doctor in St. Paul.
Wednesday March 19th; The Iraq War starts. At 4:00 this morning Sylvia needs the bathroom. I try to get her up and her legs are weak, so she ends up on the floor. Jason gets up and helps me with Sylvia. In the process the transfer disc is wrecked again. Jeff brings Sylvia's mother over at 7:30. I want to get Sylvia into see the doctor at 8:00 I call his nurse and she says they will see what they can do. Sylvia's mother says we should just go over to Rochester to the emergency room. I don't know what to do. Sister Kenny calls and says that Sylvia can't get in to see their doctor until April 23rd. I have to do something sooner. I might call my insurance case worker and see if she has any thought on what I should do. I called Julie and talked to her for a while about my problems. I need to call tonight and wish Chad a happy birthday. His birthday was yesterday.
Sylvia's left leg is getting weaker. I don't know if the medication is doing this or not. If I can I would like Sylvia to go to a group home like Julie works at. I think it would be better for Sylvia than at a nursing home. Either way I have to go on medical assistance.
Sylvia lies down when we get home from Good Samaritan tonight. A lady from church brings food for dinner. I have trouble getting Sylvia up to eat and she ends up on the floor. I call Jeff and Jason to come home to help. We get her up and she is not hurt, but I worry about the next time. Sylvia, Jason and I watch Louie Anderson after everything settles down. I am calling in the morning to see when I can get Sylvia into the doctor.
Sylvia is lying down again tonight. Sylvia's leg is sore and it cramps sometimes. Sylvia's mother calls and says she has a different commode for Sylvia to use. I am supposed to stop and pick it up. I ask if her son can bring it over and Sylvia's mother says that he gets home so late. What a joke. He doesn't do one tenth of what I do or what Sylvia used to do. Sylvia is in pain again tonight and lies down early.
It is raining this morning and we are going to have a winter storm watch tonight and tomorrow. When I pick up Sylvia at Good Samaritan she tells me she had a bad day. She is still in pain. At home I have trouble getting Sylvia into bed after using the commode. I call my insurance case worker and she says I should get a referral for Rochester tonight. I call the doctor's nurse; she says the doctor will call later. Sylvia has another spasm and it is a bad one causing her a lot of pain. The doctor does call and I tell him I want to take Sylvia to Rochester tomorrow and he agrees. Sylvia is watching TV right now and Jason is with her. Sylvia's mother is going with tomorrow.
On Friday March 28th at 7:00 Jeff and I get Sylvia up and start getting her ready to go to the Emergency Department at St. Mary's. Sylvia, Sylvia's mother and I leave at 8:30. It takes a while because Sylvia is having a spasm in her left leg while we are in the van. Jason is going to meet us at the ER just in case we need his help. Sylvia is in a lot of pain on the way over. We spend almost seven hours at the ER. They think increasing the Baclofen and the use of Valium will get Sylvia better; also Sylvia should see the Physical Medicine doctor. Before coming home Sylvia is hungry. She hasn't eaten anything since breakfast. We go to Carlos O'Kelly and then home. Jeff is at home and helps. We watch TV and Jon calls. I call Julie. We watch Road House with Jeff and then Sylvia goes to sleep at 8:30. I go to bed at 9:15. What a day!
Monday March 31st. Sylvia has a bad day at Good Samaritan today. She tells me that she cried most of the day. Sylvia's mother called her and Sylvia was crying, so Sylvia's mother got a ride out to be with her. When we got home the sister Kenny doctors' nurse had left a message. I call her back. They might be able to do something with medication before Sylvia's appointment in April.
It is Friday; I don't think I can take care of Sylvia by myself so I am taking her to Good Samaritan today. I call the nurse and she says it is okay for Sylvia to be there. I get Sylvia out there at 8:00 and she goes to breakfast while I go to Hy-Vee for breakfast. I go to school and get ready for next week. Jeff calls and I meet him for lunch. Later when I get Sylvia she says she had a good day and enjoyed herself. Julie is coming home tonight unless the roads are bad.
We could get 2 to 5 inches of snow. Jason calls and says he saw a bad accident on I-90 by Dexter. Jason, Sylvia, and I watch the movie "Wind Talkers" while we wait for Julie to get here. Julie gets here at 8:30 pm with Maddison and Ethan. They are just staying the night and will go home tomorrow.
Monday April 7th. I get up to take a shower and see that it showed during the night. Jason leaves for Rochester and then calls a little while later saying that he is coming home the roads are too bad. Schools are closed in the area as well as Riverland. It is unusual to get this much snow this late in the year. Jason helps me clean the driveway twice. I don't feel well after breakfast and it gets worse during the day. I check my temperature and it is 100.7, plus I have diarrhea most of the day. I call Sylvia's mother to see if she could stay with Sylvia tonight; she says yes. Sylvia's brother brings her over. I lie in the recliner after 7:00 for a while and then watch the news, the snow fall in the area was anywhere from 13 inches to 17 inches. Albert Lea received the most snow, 17 inches. Sylvia's mother helps but she likes to stay up late and watch TV, so Sylvia was up late also.
I am feeling better this morning; still have an uneasy stomach though. Sylvia gets a bath at Good Samaritan today. The snow is melting today. It's going to be in the forty's tomorrow; all that snow won't last long. I am getting clothes together because we are staying at Julies tonight and Sylvia has an eye appointment at the Phillips Eye Institute in Minneapolis today. We leave by 9:00. Sylvia's' appointment lasts two hours and we can come back for therapy sessions beginning in May after school is out. We go to Arby's for food and then to Julies to stay overnight. Jon is coming there sometime today also. He is getting back from Las Vegas.
Jon and I rake my lawn; actually he does most of the raking. I clean all the scrap wood out from under the porch and Jason helps cut it up into small pieces for burning in the fireplace. Jon, Jason and I load all the leaves and trash into Jason's truck and then Jason and I haul it to the transfer station.
Sunday April 13th; all the snow that fell on April 7th is gone. Sylvia, Jon, Jason and I watched the new Harry Potter movie last night. I am up at six this morning. I am thinking about next week. I need to get away from this for a while. I can't take care of Sylvia by myself right now; yet I don't want her to be sad either. I know she will be sad when she is out to Good Samaritan full time next week. I am trapped, caught in the middle; I know I can't handle this sadness sometimes.
Sylvia is missing out on so much in her life. What to do? Jon will be going home today; he has helped a lot this weekend. Before Jon goes home I do a lot of cleaning in the house while Sylvia and Jon watch a movie. Debbie Struck calls and wants to come over with a pizza at five. They stay until at 8:30. Jason helps with the bathroom and Sylvia lies in bed and we watch "CSI and Without a Trace". At 10:30 I go to bed. Next week Sylvia will be at Good Samaritan full time. I am taking a respite break.
Chapter Twelve: From respite to full time nursing home resident in 2003
There are those that might think I am complaining about how much work it is taking care of my wife. After all, most women take care of their children; they work at a job, come home and cook meals, and also keep the house clean. But babies grow into children and in the process learn to walk, feed themselves, take a shower, and dress themselves. They learn to help themselves and go outside and run and play. Taking care of Sylvia is similar to taking care of a child. The difference is Sylvia can't dress herself, get to the bathroom by herself, or get into bed by herself. She needs someone to help with all the things she needs in life that the rest of us just do. It is not easy helping her stand and transfer to a bed, a wheelchair, a commode, or a reclining chair. She can't take care of her bodily functions. That is also my job. It is a 24 hour, 7 day a week job. In the nursing home the staff spend 8 hours at work and get days off. I don't want Sylvia to be in a nursing home. I want the wife back I used to have. I just don't think it will happen, but I must try every avenue that I can; if nothing else, for my own satisfaction that I have done all I can do. But right now I need a rest so I am trying respite for myself.
Monday April 14th; Sylvia will start her first day of respite care at Good Samaritan. At this time I look at the respite as short term and Sylvia coming home again.
Jeff is over again this morning and we get Sylvia ready for Good Samaritan. Tonight will be Sylvia's first night of respite. I go out after school and check on her and go home to pick up her TV, CD player, movies, and CDs. It will be the first night in a long time that Sylvia isn't sleeping at home and I don't need to use the baby monitor to listen for her calling me. Sylvia is in bed and I fix her pillows and go home. The house is not empty; Jason is living here yet. I usually call his cell phone to see if he parked in the driveway. If he is, he moves his car and I use the garage and he parks behind me in the driveway. Sometimes he is over to Jeff's house and I just drive into the garage. He is the first one to leave in the morning driving to his job in Rochester.
Life goes on. Every day I go to school and then out to see Sylvia. I get home later in the evening, usually somewhere between 8 and 9:30. It makes for a different life style. I need to prepare for my classes each day and usually do that early each morning. I still have Friday's off, but now I spend Fridays at school correcting homework, making tests, and preparing for next week's classroom lectures. I don't need to tell every detail of our lives in this particular time frame of this chapter, so I will just give highlights. For my immediate family, they can read my daily journal.
It is hard on both of us, her being out there and me having this so called freedom. Before the respite started she spent most of her week days at day care, week nights at home, and weekends at home. Now it is 24 hours of care at Good Samaritan.
This is Day six of respite. Jon is coming home this morning. I call Sylvia at 9:15 and tell her Jon and I will be out to see her when he gets home. Jon, Jeff, Jason, and I go to see Sylvia and she is a little groggy. I think her medication may be causing this. We take Sylvia to Wendy's for lunch and then a ride around the lake before going back to Good Samaritan. Sylvia is not happy to be back and she thinks that I am never going to bring her back home. That is not the plan; I just don't know if the plan will have a happy ending. Sylvia is tired and wants to lie down. We will be back to see her at 4:00. At home I take a nap while Jason and Jon watch the hokey playoffs. Maddison calls at 3:30 and I talk to her and then Julie. I am worried that Sylvia won't be able to get better. Jon, Jeff, Jason, and I are back at 4:00. We go to dinner with her and then to the Wicker Room to watch TV and talk.
The Wicker Room is a little room with wicker furniture and it is more private for visiting. I call Julie so Sylvia can talk to Maddison and Julie. While Sylvia is talking to Julie on the phone, Julie cries. It is hard on everyone. I ask the nurse about a bath for Sylvia and she will get one tonight. We leave at 7:00 and go home to watch a movie. I don't want to be at Good Samaritan and I don't want to be home either. What a predicament to be in!
Easter Sunday; I am up at 6:00 to get a shower. I am getting Sylvia for church and will be at Good Samaritan by 8:30 to pick her up. Jeff, Jason, Jon are going with Sylvia and me to church. Sylvia is tired this morning and sleeps in church. After church I take her home. At home Sylvia wants to lie down for a while. Jon and I get of the ham ready. Sylvia's mother is bringing most of the food except the ham. The ham is from Jon; it was free when he bought tires for his vehicle. After eating Sylvia lies down again and Sylvia's mother and brother go home at 3:00. Sylvia gets up at 4:00 to use the bathroom and then lies down again. Jon leaves for home and Jason is going to help me take Sylvia to Good Samaritan when she wakes up. Jason and I get Sylvia out to Good Samaritan by 7:30. I have the nurse check Sylvia's right arm; Sylvia thinks she had a Manitou test for TB. I also tell them Sylvia likes to eat breakfast in the dining area. Lately she has been eating breakfast in her room. We leave at 8:00. I feel guilty for leaving and I hate staying there. I have to do something to keep Sylvia home somehow, but I don't know what. I feel sad.
After school I stop at Good Samaritan; Sylvia is in bed sleeping. I tell the nurse to call me when Sylvia is up; she calls me at 4:20 pm. When I get to Good Samaritan Sylvia is sitting in her wheel chair sleeping. Sylvia is really tired and can hardly stay awake. At dinner she has a hard time eating her food and using her spoon. After dinner and back in her room I get the nurse and show her how Sylvia is. I tell her that we are going backwards instead of forwards. She thinks that the Klonipin should be stopped and I agree. At 8:00 they want to give Sylvia a bath so I leave for the night. Tomorrow I will contact the doctor about the Klonipin medication change. I also call the social worker and talk to her about Sylvia's sleepy condition.
When I go out after school today Sylvia is better and more awake and aware of things around her. Our Pastor comes and talks for a while and gives Sylvia, Jeff, and me Holy Communion. Sylvia eats better at dinner tonight than last night. Jeff and I go to Applebee's and then back to Good Samaritan. I play a game of chess with a resident, and I lose the match. I haven't played Chess for a long time, but he enjoyed the game. Sylvia, Jeff, and I go outside and go around the building and then back inside. Jeff leaves for home and I stay until Sylvia is in bed and just about sleeping (8:00).
Finally we go to the doctor in St. Paul. Sylvia's mother and I are at Good Samaritan by 8:00 and we leave at 8:30 for St. Paul. We will meet Jon at the doctor's office at 10:00. We spend about an hour and twenty minutes with the doctor and she wants to change Sylvia's medication and maybe put in a Baclofen pump. A Baclofen pump is a medical device that injects the medication into Sylvia's body routinely. It is a liquid and the body absorbs the medication more easily. It seems to be good news. I think this doctor can help Sylvia. After leaving the doctor we eat lunch at Red Lobster and Jon leaves for home. Sylvia's mother and I go to Julies for a while. We leave at 4:45 and Sylvia is in pain and sad that she has to go back to Good Samaritan. Back at Good Samaritan Sylvia's mother stays with Sylvia and I get her medication (Zanaflex) and bring it back to Good Samaritan. The nurse is confused by the instructions which I agree are not quite clear. They will fax questions to the doctor tomorrow. I can't sleep late in the morning. This morning was no different; I was up before 5:00 and now it is 8:45pm and I am finally home. Sylvia worries that I am going to leave her at the nursing home. She worries that I don't love her anymore either. I try to calm her fears, but it is very hard for her and me.
I go out to Good Samaritan after school and Sylvia is up and a little better. We decide to eat out and Jeff goes along. We go to Café Don L at the Northbridge Mall. After eating Sylvia watches kids in the mall do of their dance routines, then we leave for Good Samaritan again. Sylvia is tired and falls asleep in the wheel chair. At 8:00 I tell her that I am leaving and go home.
At 9:00 I get a call from her and she is afraid and wants me to come out there. When I get there she is sleeping. I talk to her a little and then go back home. At 10:00 I get a call from her again and this time she is worse. I have Jason talk to her while I drive out there. When I get there she is having a spasm with her left hand. The spasm moves to her neck and finally her eyebrows. At 12:00 the nurse finally calls the doctor on call and when he calls back he makes a decision for Sylvia to go to the emergency room. I think this nurse should have called sooner.
Sylvia is admitted to the ER at 12:45 in the morning. I call Sylvia's mother, Jon, Julie, Jason, and Jeff. Sylvia's mother and brother come and Sylvia's mother stays with Sylvia and me in the ER room, but her brother sits in the waiting room.
Sylvia's spasms continue until 4:00 in this morning and then subside. I have to go back to Good Samaritan to get Sylvia's wheel chair so I can take her back to Good Samaritan. The ambulance brought her but I am the one responsible to take her back. She is tired and I don't blame her. She and I have had a long night. I get home and in bed by 5:00. At 6:45 I am back up, I have to be at Sanderson Repair with the Van for an alignment. I borrow Jeff's truck to go see Sylvia. Today is better, but not real good. Sylvia's left hand still twitches once in a while. I leave a message for the doctor to call so I can find out what to do for Sylvia. At 9:30 I go to school and check Jeff's fog lights. I also make a final test for my Auto Computer class. At 12:00 I go to lunch with Jeff and Jason. I go back out to see Sylvia at 12:30 and Sylvia's mother is there helping Sylvia eat. After eating, Sylvia lies down and I sit in a chair and fall asleep. At 2:30 the doctor calls and asks what happened. I have her talk to the nurse. The doctor wants Sylvia to take Benadryl to help counteract the Zanaflex. I go home at 3:00 and type all of this into my journal. At 5:00 I am back and Sylvia is sad. Jeff goes to McDonalds and buys Sylvia a fish and fries. He leaves and the aids get Sylvia in bed and I leave at 7:00. I am tired and in bed by 8:00.
At 9:30 am I go out to see Sylvia. Sylvia is crying and wondering where I was. She thinks that I am going to leave her now that she is worse. I try to comfort her and we go outside for a while. It is a nice day to be outside. I go with Sylvia to lunch and Sylvia eats by herself; which is better from yesterday. After that, Sylvia goes to her room to go to the bathroom and I leave to go home and eat and wash the van. Jason makes tuna and egg and helps me wash the van. Jeff, Jason, and I go back out at 2:30 for coffee with Sylvia. Jason and I leave and then I go back at 5:15 and stay until 7:00.
Sylvia calls me at 8:30 and she is upset. She thinks the nurses' aides are lying to her. I leave right away and go to see her. She is worried that I am going to leave her and she will be alone. The nurse calls the doctors pager number and the doctor calls back a little later; now Sylvia is down to three Baclofen (10mg each) a day instead of four. Neurontin (200mg each) is back at three times a day. She is also taking a medication (Trazodone) to help her sleep at night. We take Sylvia home and she sleeps until Julie and Chad come at 3:00. We all have dinner together; Chad helps me make it. Jeff, Jason and I take Sylvia back at 7:15. She is not the best yet. I promise that I will stop out in the morning and that she should realize that I won't leave her and she should not be worrying about it.
Every day I must deal with the sadness that comes over Sylvia. She must think I am failing her. I am limited as to what I can do for her. I try to do the right things for her but I can't change the past. She is a severely handicapped person. Her mind is good, but her body isn't.
I am up at 5:35 and go to school to get ready for class. At 6:45 I leave for Good Samaritan and see Sylvia. She is glad to see me and she looks better and the eye twitching is gone. Sylvia had a good night's sleep. I have to leave for school and on the way I call the kids to tell them that Sylvia is better. After school I go to Good Samaritan and Sylvia is just getting up from a nap. Her face is better and I think she is better. Her face does not twitch anymore, but her hand still does. She tells me that I will be proud of her because she went to therapy. I tell her I am always proud of her. We go outside for a while. Sylvia decides what she wants to eat from the two choices and then Jason and I play chess with a resident.
Jason wins his match. After that Jason and Jeff go home. I go to Hy-Vee for dinner. While there Jon calls and we talk for a while; he will call Sylvia in a little while. I go back to Good Samaritan and Sylvia is in bed and she had a bath. I call Jon and Sylvia talks to him for awhile. I stay there until after 8:00 and then I go home. The last few days have been stressful with the adverse reaction to the Zanaflex. I think that the nurse that was on duty that night had a hard time deciding what to do. I don't want to criticize, but I think retirement should be in her future. From then on I didn't like her.
This morning I am at Good Samaritan before school to see to see Sylvia. I need to sign a release for Mayo to send Sylvia's record. I have to do the same for Albert Lea Medical Center (ALMC). After school I go to see Sylvia and she is sleeping. I am tired also; I set in the chair and sleep myself. I hear Jason's voice in the hall. I didn't expect him until later; soon Jeff is here also. Sylvia gets up and has taco salad for dinner. Sylvia's left knee is sore tonight. I hope we can get that fixed soon. After dinner Jon calls and talks for a while. I play chess again tonight and Sylvia watches. The resident wins again. After the chess game Sylvia and I take a stroll around the building and look at all the pictures that are hanging on the walls. We make comments about them, in our opinion; they are either good or bad; we either like it or don't. At 7:45 Sylvia needs the bathroom and has to wait 30 minutes for help. I tell Anne about it and she tells the nurse. Then I tell the nurse about it again. I don't want people in trouble and I know they are busy, but 30 minutes is too long. I leave at 8:50.
Sylvia went to the beauty shop today and she looks great. Sylvia and I go for a ride and met Jeff and Jason for pizza at Jakes. Jon calls and Sylvia tells him her left hand has stopped twitching and she can open and close it again. Thank God! After pizza we go for another ride and call Julie and tell her the good news also. Back at Good Samaritan Sylvia and I are watching "Sleepless in Seattle" and both of us fall asleep. I guess we weren't Sleepless in Albert Lea. I wake up and go home at 8:45.
Mothers Day; Jon was home and Sylvia spent the night at home. I am made potato salad, grilled pork steak, chicken, and hamburgers. We had a good day.
It is another day for Sylvia at Good Samaritan. I stop and see her for a short time in the morning, but don't stay long because she is tired. I stop at the county human services office to pick up my medical assistance form. When all is done, I think I will be able to keep the camper and still get assistance for Sylvia. I will have to see.
I talk to the wife of my friend from Riverland who died recently for a while tonight. There are tears in her eyes and I start to cry when she tells me that her husband thought a lot of me. He has been gone over a year now and I still think of him. Last night I got home at 9:15 and sat out in the porch with no lights or TV on in the house. I just sat there in the quiet and fell asleep. Tonight it is 10:30 and I am typing this info in and don't know if I want to keep it up. Oh well! Tomorrow is Riverland's awards ceremony and graduation in Austin. I have been teaching at Riverland fifteen years.
Sylvia is seeing the therapists and the PT doctor today. The consensus is this. Sylvia would benefit from more therapy there and she may need knee surgery. Sylvia had X-rays of her knees and one X-ray was with her standing. We will see a specialist on June 4th and then a decision will be made. Looking back I wish I would have just made an appointment with our doctor at Mayo and had him check Sylvia instead of wasting time at ALMC. The only thing is; I remember he told me during a phone conversation on 3/14 that he did not have any answers. We ate at Victoria's in Rochester. It is an Italian restaurant and serves good food. I am glad Jon went along today; he had good ideas and suggestions.
Jon's Birthday; I went to the eye clinic today; my left eye is blurry when I compare it to my right eye. I made an appointment to for next Thursday to recheck my eye. I just got new glasses a couple of weeks ago. Jon and I are going to see the lawyer this morning. I don't know if I have to file for medical assistance or not and I have a few questions that need to be answered. After that, Sylvia and I are taking Jon out to eat lunch for his birthday. Sylvia's mother is going along also. I have to get information together for the lawyer. We have a good time at Applebee's, then have to take Sylvia back and Sylvia's mother to her card game.
I am spending the weekend at Jon's house. It is a windy day with gusts up to 45MPH. Jon and I go see my cousin who is terminally ill with cancer. On the way to Starbuck we stop at Benson and have lunch at DeToys. We stay at her house for almost three hours and go through old pictures. My cousin also knows Jon's friend. She calls him and he comes over to visit. My cousin says she feels better now that she is off the Chemo therapy. She says that the doctors can't do much more for her. I don't think my cousin will be with us for long. After leaving her house we stop at Jon's friend's house and see how he is doing on his building project.
Jon and I are cleaning his deck. It takes almost five hours to do it. When we are done Jon and I go to Long Lake to see how well his friend Chris and his dad are doing fishing. Julie had called and left a message on my cell phone so I call her back. She had called Sylvia and talked to her for a while. I call Sylvia and also talk to Jeff and Jason. Jon grills pork chops for dinner and then we watch the Stanley Cup playoffs. The Mighty Ducks from Los Angeles win over the Devils from New Jersey. Jon makes a good breakfast and I leave for home at 10:50. On the way home I call my aunt in Kansas and my aunt in St. James. I call other people also. I stopped to see my cousin and gave him pictures of his mother and father; and then I went to see my other cousins. I talked with them for over three hours and had dinner there. I stopped at Zanz to get cheese Chilitos for Sylvia. I get to the nursing home at 7:10 and stay with Sylvia for a while and then go home.
Sylvia, Sylvia's mother and I leave for the Phillips Eye Institute at 10:15. Two weeks ago Sylvia was here and the therapist checked Sylvia's' eyes for tracking and blind spots. She spent an hour checking her. Now I bring Sylvia back. She has a 1:00 appointment and we stop at Julies first. Julie makes sandwiches for lunch and then Sylvia goes to the bathroom. At her appointment, the therapist works with Sylvia and gives her homework to do with her eye muscles. We get back to Julies she wants us to stay for dinner. Sylvia bought emerald ear rings for Maddison to use when she wears her costume at her dance recital. Chad comes home and helps me get Sylvia down into the basement and Sylvia sleeps for a while. Maddison shows us that she can ride her bike without training wheels and Ethan drives his Jeep. We have grilled pork and salmon and we leave at 7:15 for Good Samaritan.
Emerald ear rings
We leave at 10:15 again to go to Rochester; Sylvia has a 2:00 appointment. We eat with Jason and then go to Toys R Us to find Polly Pockets for Maddison. The doctors give Sylvia an extensive check-up and she needs to come back on June 26th for a medical check-up to make sure she is able to have surgery on her left knee. They think she should have the surgery, but they are concerned; they wonder if she can survive it. We leave the doctor at 4:15 and meet my cousin at Red Lobster for dinner and then go home at 6:30.
I don't know if we will be able to go to Lake Carlos next month. Sylvia has two Rochester appointments that same week and I don't want her to miss them. I will send an email to the Mayo doctor today to see if Sylvia's appointments can be moved up.
Sylvia has eye therapy today and Sylvia's mother and I are at Good Samaritan at 10:00. Sylvia is not ready because she is having bowel problems again. She tries twice with no results. She worries about it and so do I. The eye therapy goes well and Sylvia needs to come back again in two weeks. They tested her eyes with glasses that had one red lens and one green lens. This check is to see if both eyes are working together, hers are. Sylvia has a little eye exercise home work before returning. We stopped at Julie's house on the way up and again on the way back. On the way back we stayed for two hours at Julie's and Sylvia was able to hold Ethan and a new baby. The baby's name is Bryn she is the daughter of a high school friend of Julie. Back at home it is 9:30 and I am tired.
I am not going out to Good Samaritan for breakfast with Sylvia this morning; I am not feeling well. I feel like I am deserting Sylvia by not going. I have an appointment at Sanderson Repair for the van to recheck the alignment; the van still pulls to the left. I will go to Good Samaritan this afternoon after I get the van back. I call the reservation phone number for state campgrounds and get the date changed from arriving on 7/13 to 7/20 instead. Sylvia has two appointments in Rochester on 7/15 and 7/17. The appointments are important. They are to see if she should have knee surgery and if she is strong enough to survive the surgery. I stayed home this afternoon and slept a little. I just don't feel well. At 5:10 I am at Good Samaritan. Jeff and Jason are there. Even though I don't feel well I stay with Sylvia until 9:00 and go home.
I am at Good Samaritan this morning to sit with Sylvia while she eats breakfast. After she is done I pick up the camper. I am going to Chrysler training school next week and will stay at Bakers Park Preserve by Maple Plain, MN. Jeff and Jason go to Good Samaritan and bring Sylvia home for the afternoon. I am getting ready to leave for the week. Jon is coming home tonight. Sylvia is glad to be home today we have a light lunch and then she watches TV. After dinner Sylvia finishes watching "3000 Miles from Graceland" and is sad to go back to Good Samaritan. Jon calls and says he can't make it home; he has a tower crew working on the lights and they won't be done until late tonight.
I am up early today because I need to get Sylvia's mother and then get Sylvia so we can leave for Rochester by 6:50. The aids gave Sylvia a bath early this morning; they forgot to put the bath on the schedule for Wednesday night. We see a Mayo doctor at 8:45 and have to be at the Gonda building for an Echocardiogram. After that we go to the subway level and eat at Quizno's. At 1:00 Sylvia has an Electrocardiogram and then a chest X-ray; and back to see the Mayo doctor again. She calls the neurologist and he does not think he needs to see Sylvia and thinks she will do okay with surgery neurologically. We head back home we are all tired; it has been a long day.
Today is the seventy fifth day that Sylvia has been at Good Samaritan; I am tired. I am going to Mankato to meet a friend of mine from high school at the Mexican Village. He and I have been friends since ninth grade. First I will go see Sylvia for breakfast and then meet my friend his dad at the Mexican Village in Mankato. We talk for almost two hours and then we leave, I go shopping and then come back home. Before leaving Mankato I stop at Zanz for Chilitos. Sylvia has one for dinner and then we sit outside for a while.
We are going to church today. Jeff and Jason are going also. I am sad in church today; the sermon is about how our body is only temporary and we need to look forward to life with Christ. After church we go to Perkins and then home. Sylvia lies down for a while and I rearrange my computer room. For dinner we have grilled pork and raw vegetables with dip. I will take Sylvia back at 8:00. Life sucks for us and I am very sad a lot of the time; maybe I need to talk to someone.
Sylvia has an eye therapy appointment today; we will stop at Julie's house before and after the appointment. Sylvia's mother is bringing food today. The person from Phillips Eye institute calls and says Sylvia is not gaining enough from therapy and they are going to stop therapy. The insurance company won't pay. I tell them we will come today anyway. After I pick up Sylvia's mother and Sylvia, I think we should just skip the therapy and go to Julie house instead. We do and have a good time except Sylvia has to stay in the entry way because there aren't enough people to take her up or down. Julie's house is a split level. In the past when we have been here it has taken four people to get her up or down. Jason is staying overnight with Julie since he worked in Minneapolis today and will tomorrow also. On the way home we stop at Faribault at an A&W to eat. I take Sylvia to Good Samaritan, Sylvia's mother home, and I go home. After awhile I am back and make sure Sylvia is okay in bed and then leave for the night. I am not sure Sylvia will ever get to leave Good Samaritan and come home. I think I am failing her.
The 3rd of July parade is tonight. Jeff and Jason are bringing Sylvia to the parade. I am driving the double car that automotive and auto body students made. The car is made up of two front wheel drive cars attached back to back; each end is operated independent of the other and has its own engine, transmission, brakes and steering. I have made the comment that when driving this car you will never have to back out of your garage again. I drive the car to the fairgrounds from Riverland and also help with the float decoration. It is very hot today.
Maddison riding with me in the 3rd of July parade
I had a fun time driving in the parade last night. I was surprised to see Julie and Chad with Maddison and Ethan at the parade. I asked Maddison if she would like to ride with me. She did and I took her with me the rest of the way from our church and back to the fairgrounds where the parade started. They stayed overnight and Sylvia stayed overnight also.
Julie had to leave early this morning; she Chad and the kids are going to a cabin. Sylvia's mother and brother came for lunch and Sylvia's mother brought potato salad and deviled eggs. When they went home, Sylvia, Jeff and I slept for a while. Jason and I took Sylvia back to Good Samaritan and stayed with Sylvia for dinner.
I feel sad tonight; I don't know how long I can keep this up at times. I don't want Sylvia out there, but I can't keep her home either. I talked to an aid, about the parade and told her that Maddison rode with me in the parade. I just feel Sylvia is missing out on so much. The aid asked if I was having a bad day. I couldn't even talk about it, it makes me sad. I went to Sylvia's room and cried. I think I will talk to my Pastor next week about all of this. On the evening of the 4th Jeff, Jason and I took Sylvia to watch fireworks. We left Good Samaritan at 9:00 and went up town by the north park area. The town was full of people, I parked at First Lutheran church and Jason parked in the old high school parking lot. As we started to go to Fountain Street it started to rain and the fireworks started also. They started early tonight; maybe because of the rain and a tornado watch. Sylvia had a good time and afterwards I took her back to Good Samaritan.
Sylvia is getting her hair cut and styled in the beauty shop at Good Samaritan. Her mother and I are here to take her to Rochester to see the knee surgeon. At the clinic, it takes a while for the doctor to see us. He says Sylvia can have the surgery if she wants to. It won't do miracles, it won't make her walk, but it will take away her pain. Sylvia will have to decide if she wants to do it.
Sylvia and I are going camping for a week with all our kids. First we are going to Jon's house. Saturday afternoon we go to Artichoke Lake north of Appleton where a friend of Jon's has a boat landing. Jeff and Jason do tubing and skiing. Back at Jon's he makes a nice dinner and then the next day we will drive to Lake Carlos State Park. Julie and Chad and the kids are going to meet us there and they are bringing a boat along. During the week Sylvia was able to get a ride on Julie and Chad's boat twice. It took four of us to get her in the boat and back out again, but she had a good time. The kids were able to water ski and tube. They took turns driving the boat so everyone could have a chance at skiing or tubing. Sylvia stayed up late some nights and had a good time. Chad and Julie made breakfast most days.
Jon and Maddison made sis kabobs for dinner one night; it was good. All of us had a good time. On Tuesday I go to Alexandria to see a dentist. I have a toothache that started on Sunday night. The fix is temporary; when I get home I will have it checked again.
Jon and Maddison making kabobs
It is Sunday morning and we are back from camping; Sylvia is at the nursing home. Yesterday Sylvia, I and our kids went to the Panzer Family reunion in St. James. I am the one who got it started and everyone wants to do it again next year. My uncle isn't well so he didn't come this time. After everyone leaves, I and some of the cousin's go to his house to visit.
I am up at 7:00 and get coffee and a couple of rolls for Sylvia and me. While I am eating my roll with Sylvia the tooth that I had fixed at Alexandria broke off. I will have to call on Monday to see what the dentist can do. I clean the garage today and wash the van. For dinner I am grilling at Good Samaritan. I hope they don't care; but I am going to do it anyway. Well we go to Pioneer Park instead of grilling at Good Samaritan. It was better that way.
I have to see the lawyer today about the medical assistance. It makes me feel sad because I need to take Sylvia's name off the house, the vehicles, and the camper. She can only have $3000.00 worth of assets. I will need to make adjustments to insurance policies as well. After leaving the lawyer I get into the van and start to cry. It just does not seem fair.
I go to the bank and start a new checking account for me. I need one with just my name for my personal things. The old checking that Sylvia and I had will be used to pay bills that Sylvia will have. I go to the court house to get a copy of the deed to the house. I need to put the house in my name only, plus I will need a new will. I am going to the dentist this afternoon also. He is able to fix my tooth without removing it. Sylvia is sad today because of all this change. In some ways it is like we are getting a divorce and I get all the assets. A couple of ladies from church came to visit. They brought Sylvia gladiolas. Jason and Jeff come to visit tonight and I eat dinner with Sylvia. Tonight the food isn't too bad.
My birthday is tomorrow. I think it is causing trouble. Sylvia's mother thinks Jeff and Jason should arrange it; Sylvia is sad because she can't; Jeff and Jason didn't think about it, so it is up to me. I don't think Jon or Julie will be able to come home for it. I meet with the lawyer this afternoon. I make out a new will and work with the lawyer's paralegal on the medical assistance papers. I have another appointment on 8/20. I talk to Julie today and tell her I just feel like I don't do enough for Sylvia. I don't know what is right anymore.
My 57th Birthday: I bring rolls out to Good Samaritan and also to Riverland this morning and then go back and eat breakfast with Sylvia. I go home and clean the house. Jeff is over at lunch time and Maddison calls and signs me the happy birthday song. While I am talking to her Jon calls also. Sylvia and I go to a restaurant in Hayward called Hutch's. The food was good and Sylvia and I had a good time.
It is Sunday and we celebrated my birthday yesterday. We had lunch and cake in the afternoon at home, Sylvia's mother and brother were here along with Jeff and Jason. Julie came later. I am up early today and clean up so I can go to the 40th wedding anniversary of Myrna and Edgar Mumme. They are relatives of mine. I asked Jason if he wanted to go along, but he was sleeping. I called Jeff and he wanted to stay home also. I leave the house and go to Perkins for breakfast. At Perkins I felt guilty because I am not taking Sylvia along. While eating the waitress comes by to check on me and says "How is everything?" I say "It is all right" the food that is; in my mind everything else is not alright. I watch other people come in; they visit while they eat and it seems life is grand. I think life sucks for Sylvia and me. I leave Perkins and go to Good Samaritan and go with Sylvia to breakfast. I have an orange for her to eat; the oranges at Good Samaritan are not always good; sometimes they are bitter. After eating we go outside and sit and enjoy the weather. You can't duplicate these conditions inside a building. I take Sylvia back inside and leave for Mankato and South Branch. I drive back roads to South Branch and it is nice to see different things. At the celebration I meet a lot of people and have a good time. Sylvia is not able to attend this party; the basement is not wheel chair accessible. I know she would have enjoyed it though.
I have a meeting with my Dean from school. I just want to tell her how things are going. We meet at café Don L. She asks me how Sylvia is doing and I can't get the words out and start to cry. I can't help it; it is hard for me to talk about it. I get better and we have a nice visit and stay for one and one half hours. She is a very nice person. I go back to school and eat there because they are having pot luck and I was invited. I brought cookies, plates, cups, and napkins. In the afternoon Sylvia and I go to Herberger's and exchange my billfold. Sylvia looks at a purse and buys a necklace since the one she bought at Shopko made her neck turn red. Back at her room; Sylvia is sad because she doesn't know if she can operate the purse she wants to buy. She realizes that she has lost a lot and it is hard for her to adjust. It is hard on me also. I can hardly stop from crying as I type this. When I saw our former Pastor last week he suggested I should talk to the doctor about medication for my depression, but I didn't. I am trying to cope with it all by myself.
I heard a noise early this morning (3:00) upstairs and turned the light on to find a bat flying around the room. I knocked it down with a pillow and then covered it with a towel and threw it outside. I didn't go to Good Samaritan this morning, I needed to replace the starter on the van and changed oil and filter. Jason gets Sylvia at 4:30 and we eat at home and then watch the movie "The Hunted". I take Sylvia back at 8:15 and stay until 9:00.
Today is August 17th two years from when Sylvia had her first headache. Sylvia, Jason and I go to the 8:00 church service today and then to Perkins for breakfast. I take Sylvia home for the day. She lies down in the afternoon and for dinner I grill meat and Sylvia watches TV.
It is Minnesota State Fair time, Sylvia and I used to go to the State Fair almost every year. The kids and I are taking her this year. Today I am taking Sylvia to Julie's house and tomorrow we are going to the State Fair. Jon, Jeff and Jason are staying overnight at Julie's also. It is a family affair. The only two that are not going to the fair are Ethan and Chad. We spend six and one half hours there. Sylvia buys Maddison a Scooby Doo dog. We have a good time, but on the way home I get a call from my cousin Elaine Panzer. She has bad news, my uncle died yesterday August the 23rd. I am to be a pall bearer.
MN State Fair: Back row; Jon, Julie, Jeff, and Jason, front row Maddison and Sylvia.
More sad news today, my cousin calls and tells me her sister died today. I plan on going to the funeral. The funeral will be at Starbuck, MN which is not far from Jon's house. I will stay at Jon's house. The funeral is Saturday the September 13th. Jon and I go to my cousin's funeral in the afternoon. I am the only cousin there. On Sunday, Jon and I go for a ride in the country and then walk about three miles down a gravel road to Lac A Parle Lake. I leave for home at 12:45 and stop in Mankato at Zanz to get food for Sylvia.
I am having a colon test this morning, but first I go for a walk. Jeff and Jason take me to the hospital. I haven't had anything to eat since Sunday night. I have to wait for an hour before they start the test. In the room for the test, the nurse starts an IV and I am asked to roll on my side. The nurse checks my rectum and that's all I remember. When I wake up I am in the recovery room. Jeff, Jason, and I go to Perkins for lunch afterwards. It felt good to eat again. I am not supposed to drive after the procedure so Jason and Jeff drop me off at the nursing home so I can see Sylvia. When I am ready to go home I walk part of the way and Jason comes to get me.
I sleep later than usual and go to the first church service. After church I go to Wal-Mart and then home to eat breakfast and then go for a walk. I get Sylvia at 11:00 and bring her home. This afternoon at our house all the girls that used to work with Sylvia at the Regis beauty salon are having a get together. At 2:00 the girls and their spouses start coming. Sylvia and I have a good time and the last ones leave at 6:00. Sylvia had a great time visiting with everyone. I took her back at 7:00 and she had a bad back ache. After she was in bed and fairly comfortable I went home.
I have Thursday and Friday off from school this week. It is Minnesota Education Association (MEA). During these two days Minnesota teachers are able to get continuing education. It really doesn't apply to me since I get plenty of continuing education during the summer. I have breakfast with Sylvia on Thursday morning. I do yard work at home and start to pack. Tomorrow Jon and I are taking a trip to see my aunt, uncle and cousins in Wichita, KS. I spend time at school making an agenda for the advisory board meeting next month and then go see Sylvia for dinner and leave at 8:00. Jon gets here at 2:15 Friday morning and I am up and ready to go.
We arrive in Wichita at noon and get a room to stay in and then call my aunt, but no one is home yet so I leave a message. Later that afternoon Jon and I visit my Aunt and Uncle. Their daughter comes over; their son is already here. Their son and their son in law come later. My cousin invites Jon and me to go with him and his wife to see them play blue grass music. It was a lot of fun and good music. We leave for MN Sunday morning, but first stop at my aunt and uncle house because I forgot a glass they gave me. They aren't home, but have the glass is sitting on the front porch. Jon drives first and stops at Liberty, Kansas for food and gas. I drive until Des Moines and then Jon finishes the trip home. We arrive in Albert Lea at 3:15. We stop at my house first and then out to see Sylvia. Sylvia's mother and brother are there with Sylvia.
It is Tuesday the October 21st, our 36th anniversary. Sylvia's mother brought food to the nursing home and we had a little celebration. Jeff and Jason are here. Julie and Chad and Jon can't be here, but call.
This morning I walk at the mall for forty minutes and then have breakfast with Sylvia. We talk to the nurse about Sylvia's blood sugar level. They have been checking it. Sylvia and I are concerned about it. Sylvia doesn't need any more problems. I give the nurse a copy of the instructions for Sylvia's medications before surgery. Her knee surgery has been moved up a week. I think I will bring Sylvia home on 12/21 so we can leave early in the morning on the next day for the Mayo clinic. I go home because I want to see what I can do for the shower leak from the upstairs shower. The drain has a leak and the ceiling in our dining area gets wet when the shower gets used. I work on the drain for the shower and I think I have the problem solved. Once that is done a fellow faculty person said he could come over and plaster the hole. The back door needs a new sweep seal. I go to Home Depot and they have nothing. I go to United Building Center and get better results. I end up having them order the correct one after trial and error. I rented the movie "Finding Nemo" and we watch it and eat microwave popcorn. In the middle of the movie Sylvia needs to get her bath. We finish the movie after she is done with her bath. Sylvia is very hard to get situated in bed tonight and I get frustrated with it all. She thinks I am frustrated with her and at times I am. Tonight I don't leave until after 8:30; which is not late, but I am tired. Not physically, but mentally and emotionally. I had most of the day to myself, but it is not the same. As I leave tonight it is foggy and I wonder if Jason got back from Rochester okay. When I get home Jason is not there, so he must be at Jeff's house.
Today is Maddison's 7th birthday and Sylvia's mother's 84th birthday. Sylvia's brother brings food and Sylvia and I get the cake, so we can celebrate Sylvia's mother birthday at Good Samaritan. I call Maddison and Sylvia and I talk to her and Ethan. After all leave, Sylvia and I go to the chapel and talk for a while. Sylvia's diabetes is better tonight; the medication is helping. I am still upset with Good Samaritan; I don't think they handled the situation just right. I think Sylvia should have seen a doctor and I will still take her.
I have my Automotive Advisory Board meeting at school tonight so I don't go out to see Sylvia. Jeff and Jason are there instead. After the meeting, I check my cell phone and have a message from Chad. I call him back and it seems he is upset because Jeff and Jason are accusing their sister Julie of not coming to see Sylvia enough. We talk for about twenty minutes and he is going to talk to them. I want to talk to Julie first if I can. I hope that there aren't any problems. I know Julie is busy and I have told Jeff and Jason that. I don't think they mean anything negative.
My co-worker at Riverland and I go to Applebee's and have a couple of beers and talk about school, life, our troubles, and just general things. It was good; I am home by 10:00.
Sylvia and I are going to Maddison's birthday party today. I am packing clothes to stay overnight. When I am done, I pick up Sylvia's mother and we get Sylvia from Good Samaritan. I get her clothes for Saturday night also. I am not certain if we will stay the night because the weather may be bad and we are going to the play at Riverland tomorrow. We get to Julie's a little early, but that is the way it is. It is hard to plan arrival and departure times now because it takes time for Sylvia to use the bathroom. Julie needs to go to the grocery store so I take her and we have a chance to talk about the problem of Chad being upset with Jeff and Jason. She is going to talk to Jeff and Jason. I feel better about the whole situation now. Maddison has a fun party and Sylvia enjoys herself. Julie and Chad live in a split-level house. So it seems to me that a person is always going up or down to do something. It is no different for the party. The gift opening in on the lower level and the cake and ice cream is on the upper. Jeff and Jason help me get Sylvia to the basement and help get her upstairs when she needs to be there. It worked out well, but it is work. Before everyone went home two of Chad's relatives helped Sylvia back down to the basement. Sylvia was tired, so she went to bed by 8:00 and so did Sylvia's mother. I stayed up and talked to Julie and Maddison.
Sylvia was up at 1:00 and then at 7:00 for the bathroom. I helped Julie clean up and Sylvia's mother folded their clothes before we left. It snowed last night so we left for the play at 11:30 just in case the roads where bad. It was worse in the cities than in Austin. We enjoyed the play (Dickens Christmas Carol) then went to eat at Perkins before coming home. Sylvia is tired tonight and wants to go to bed early. Because of Thanksgiving, everyone is supposed to have their bath one day early. We talk to the aids and they work it out so Sylvia can have it tomorrow night. We have a little situation tonight also. I ask an aid to help me put Sylvia on the commode. She hesitates and finally helps, but won't help taking Sylvia off. A couple of aids start using the lift and Sylvia is in pain so one aid asks another aid to help. She says yes and I also help Sylvia get into bed. It was easier for Sylvia, the aides and me. I get Sylvia situated and leave at 7:30. At 9:00 I get a call from Sylvia; the aids can't get her comfortable, will I come out there. I go and get her fixed and come back home.
I am up by 5:00 today; I have a lot to do before my class this morning and I want to walk at the mall. I have an appointment with the dietician today at 4:00. I am doing what I can to lose weight. I usually walk about two miles every day. On the way to the dietician I get a call from Lonnie; he is Jason's supervisor; he tells me Jason got hurt at work; Jason dislocated his right shoulder and they took him to urgent care. He needs a ride home because of the medication he was given. Jeff and I go to Rochester and pick him up. Jeff drives him home in his truck. We stop at Good Samaritan and I stay with Sylvia until 8:25.
Before going to see Sylvia tonight I go to the dietician. On her scale I weigh 182 pounds; I have lost almost 25 pounds. Sylvia does not like her dinner tonight so I get food from Wendy's. We call and talk to Ethan and wish him a birthday; I leave early tonight because I am tired; at home I go to bed by 8:00.
Sylvia, Jeff, Jason and I eat pizza for dinner. Kathy is visiting tonight and Sylvia and I talk with her about the problems she had with the nursing home. I read part of a Time magazine to Sylvia tonight. It is snowing tonight, tomorrow we are going shopping at the Burnsville Mall and Sylvia's mother is going along. We will stay at Julie's house to be there for Ethan's birthday party on Saturday. Saturday I am going to a birthday party for a teacher from Riverland in Glennville. I pick up Sylvia and Sylvia's mother and we go shopping at Burnsville. Sylvia has a good time looking at all the stuff and just going to all the stores. Sylvia's mother gets a few Christmas presents. Julie and Chad are taking Maddison and Ethan to see Disney on Ice; we are going along also. It works out well; we are able to follow them right to the parking ramp at the Target Center and get good seats too. We stay overnight because they are having a birthday party for Ethan on Saturday.
I go with Julie to the grocery store (8:30-9:30) and Sylvia sleeps while I am gone. Sylvia's mother watches Ethan. When we get back I make breakfast for Maddison, Ethan, Sylvia, Sylvia's mother and me. Julie and Chad have to go shopping for a while. While they are gone Ethan locks himself in the bathroom and while I try to open the door with a table knife I jab myself in the left eye with the knife. It hurts, but does not do any damage. Before Ethan's birthday party starts Jeff and I try to get Sylvia upstairs by ourselves and lose control and Sylvia slides down five steps. She bumps her head and is upset, but all right. Sylvia's mother is upset with us because she thinks Sylvia should be at the home until after her surgery. It doesn't make any difference because we would still have to lower and raiser her on the steps. Ethan has a nice party and we leave for home at 7:00. I take Sylvia to Good Samaritan first and Sylvia's mother is with me because I didn't' want to go all the way to her house and then back to Good Samaritan.
After dropping Sylvia's mother off, I go to a birthday party for a person from Riverland at the Glenville Legion and get home by 11:00. I sleep in the blue recliner for a while and then go upstairs to bed.
Today, like most every day, started out at a little after five in the morning. I take a shower, get dressed, have a little breakfast and leave for school at six. I stop at Bagels and Beans for coffee and head out to school. I get ready for my class and then at 6:45 go to Northbridge Mall to walk until 7:30. Then back to school. After school is over I usually go to see Sylvia, but there are times I need to run a few errands before going to Good Samaritan. Tonight Sylvia and I are going to Perkins to meet a couple for dinner. They are very nice people and Sylvia and I have a good time visiting with them. He pays for the meal again. Next time we go out I will talk to the waitress first. Sylvia and I really do appreciate them. We get back to Good Samaritan by 7:45 and Sylvia gets ready for bed. The aids always leave Sylvia's pillows for me to fix. Tonight the light, button is not on Sylvia's shirt. Tonight I don't leave until after 8:30.
Sylvia tells me she had a bad day today; she says she needed to have a bowel movement and was having trouble going. She felt it was ready to come out and then the aids said she had been on the commode long enough and got her up. I think we should try and stick it out. Next week she will have surgery and maybe, just maybe, it will get better. We have pizza from Godfathers tonight. The weather is not too nice; it is raining with snow later tonight. I call my friend at his dads place and we will meet in Mankato this Wednesday night at The Mexican Village. I play chess with a resident tonight while Sylvia gets her bath. He has had a tough life also.
Another day at school today; the students finish an auto transmission R&R. It should have gone well, but didn't so the transmission has to come back out. I told the customer that we needed more time, but that didn't happen. Tomorrow we will see what the problem is; student error or a defective transmission. After school I pick up Sylvia's mother and go to Good Samaritan. We are going to Mankato to meet my friend from high school and his dad at the Mexican Village for dinner.
On the way Julie calls and wants me to baby sit on Thursday night. I am contemplating on just going by myself. I tell Julie I will call back. I tell Sylvia about the babysitting; she cries; she wants to go and so I will take her and Sylvia's mother along to babysit on Thursday.
It seems my life is in high speed and then almost stops and then speeds up again. I explained it this way to a doctor. My life is going fast in slow motion. He thought it made perfect sense. We are a little early at the restaurant and wait for a high school friend to arrive. I see a person walk in and think; wow I haven't seen him in a long time, then my other friend and his dad walk in. They all rode together. We had a nice visit and after leaving the restaurant Sylvia, Sylvia's mother, and I look at Christmas decorations in Mankato. Snow is starting to fall, we better start back. On the way back to Albert Lea I drive a different route, driving east on US Highway 14 going through Waseca and taking MN highway 13 south to Albert Lea. Close by Otisco there is a farm place that has a lot of lights and I want to show Sylvia. The snow is coming down heavier and I want to get home as soon as I can. The roads are getting snow covered which is making driving difficult. We will have to skip the farm place tonight.
I took Sylvia back to Good Samaritan first and then took Sylvia's mother home. I don't think Sylvia's mother was happy with me because I think she wanted to go home first. Oh well! Because of logistics it is easier to take Sylvia back first then Sylvia's mother. I finally got home and into bed by 11:00.
It is Thursday and I am up by 5:00 and getting ready for the day. I have to pack things to stay overnight at Julie and Chad's. Other than that, it is a normal day. I stop at Bagels & Beans for coffee and go to school. At school I start my computer and log on to the network. I leave school and walk to the mall and back. When the students are in the lab they I inspect the transmission that they removed and find the answer to problem with the transmission. Sure enough the pump is the problem. I call the student's father about what is wrong.
He calls back later and tells me that the salvage yard will stand behind the transmission and send out a rebuilt pump and torque converter. What a relief that is. After school Sylvia, Sylvia's mother, and I go to Julie and Chad's house and watch the kids. We have a good time. Sylvia slept fairly well last night; but it was hard to get her comfortable. We leave for Albert Lea at 9:00.
I invited Riverland people to our house for a Christmas party. I have a lot to do before the party starts. I need to clean the house and get the wood together for a fire in the fireplace. Jeff comes over after work and takes the van to get Sylvia and bring her home for the party. Jeff and Jason help me prepare for the party. They stay and enjoy themselves with Riverland people as well. Sylvia has a good time, she knows most of them. I drink a little too much and shouldn't be driving. Jeff and Jason take Sylvia back to Good Samaritan.
I started this out as being a respite for myself. I had good intentions of bring Sylvia home again after a short period, but that didn't work out. It is December and at the end of this month Sylvia will be back in Rochester for another surgery. This time for her knees; I don't think the knee surgery will improve her chances of walking again, but maybe the knee pain will improve.
Chapter Thirteen: Knee Surgery in 2003
At church this morning a prayer is said for Sylvia. She will have surgery on both knees this coming Tuesday. Many people are praying for her recovery. I did not take her to church with me, but I will bring her home today. Tomorrow she has a series of tests before having the surgery and it will be better to leave from our house instead of getting her from Good Samaritan Monday morning. I have to pack Sylvia's things tonight because we need to leave Albert Lea by 5:00 to get to Rochester on time. Sylvia is nervous about the surgery and I guess I am also. Jon will meet us at Rochester tomorrow. Jason is home and he will help me with Sylvia tonight.
Monday morning, I am up at 4:00. Jason and I get Sylvia ready. Jason drives and we pick up Sylvia's mother at 5:00. We arrive for our appointment a little early and have to wait. It is better to be early and wait, than to be late and really be waiting. I get Sylvia's itinerary for the day. She has to have an X-ray, blood work, and give a urine sample. Then it is back to see the doctor and receive patient education. At the X-ray department Sylvia is in a lot of pain lying on her back. When the X-ray is over and she can sit up she is much better. While waiting for the doctor Jon arrives. We see the doctor at 11:45 and another doctor and another doctor. Finally at 1:10 we leave to go to patient education. Jon, Jason and Sylvia's mother go with Sylvia to patient education. I have to go to the bank, the pharmacy, and the Mayo insurance desk. Before leaving to do all my stuff I need to use the bathroom. While I am washing my hands, the smell of the soap brings back memories of times past in the hospital. Some of those memories are good and some not so good. At 3:00 we are done for the day and all of us go to Red Lobster; what a stressful day. At home; Sylvia lies down and it is hard to get her comfortable. Tomorrow we have to leave for Rochester even earlier.
(Julie's birthday) Julie and Chad came last night and are going with us this morning. Most of us are up at 3:45. I have help getting Sylvia dressed and soon Sylvia's mother and brother arrive. It is now 6:00 and we are at the Methodist hospital. At 7:30 Sylvia goes to the surgery area and we will have to wait for word of her being in surgery. I wait; there is a sense of nervous anticipation. The day goes by slowly. Sylvia's surgery turned out well, but we had to wait a long time for her to be well enough to leave the recovery room. Sylvia will spend the night in intensive care so they can monitor her heart and lungs. The effect of the morphine is slow coming out of her body. My kids (Jon, Julie, Jeff and Jason) and I leave at 8:00 and go to our hotel room. Earlier, Chad took Maddison and Ethan back to their house in Burnsville.
(Jason's birthday) This morning I find out that Sylvia had a bad night, but she is doing better this morning. Julie, Jeff and Jason leave; Julie is going to Geneva to Chad's parents and Jeff and Jason are going home to change clothes. Sylvia is still under the effects of the morphine. The therapy people come and get Sylvia up so she can sit on the edge of the bed. When she is in bed they have the knee bending machines on her legs making her knees bend. At the end of the day Jeff, Jason, Jon and I go to the Holiday Inn and get our room and then to Red Lobster to eat. It is Christmas Eve and there are not many eating places open this time of night. We are lucky Red Lobster is still open. The waitress isn't very happy; she tells us her boss wanted to stay open longer tonight and I don't think she was pleased about it. She did treat us well though. I call to check on Sylvia; she is still sleeping. We go back to the Holiday Inn and spend the night there.
First thing this morning is to see Sylvia. She is doing better and is more alert and has liquids for breakfast. My three sons and I go to Christmas Day church service at Redeemer Lutheran church in Rochester. After church we find a restaurant that is open and have breakfast. It is hard to find a restaurant open on Christmas Day morning. Back at the hospital; Sylvia's mother and brother are here already. Sylvia is sitting in a chair this morning; and stood on her legs. The doctor tells us that Sylvia may have a blood clot in her lungs and they need to do a CAT scan or as it is called now a CT scan.
A CT scan is also called computerized tomography or just CT. It combines a series of X-ray views taken from many different angles to produce cross-sectional images of the bones and soft tissues inside your body.
The resulting images can be compared to a loaf of sliced bread. The doctor will be able to look at each of these slices individually or perform additional visualization to make 3-D images. CT scan images provide much more information than do plain X-rays.
Later in the evening I find out she has blood clots in her lungs; this prevents her from getting as much oxygen as she should. At 6:30 we talk to the doctors; they think Sylvia will need blood thinner, but they will talk with the knee surgeon first. On the way home the doctor calls and tells me that they are going to give Sylvia blood thinner medication to help get this problem fixed. While I am on the way home my Pastor calls and asks about Sylvia. Jon called his grandma and told her about what they had planned for Sylvia.
I am up at 5:11 this morning; I have clothes in the drier and I need to get ready to go soon. Jon is still sleeping; he slept in Sylvia's hospital bed last night. Jason is up and getting ready for work. I wonder what the day will bring. I pray we will have good news today and I prayed for Sylvia last night and for all of us. I pray that God will give us good news. Sylvia is doing better; she still hurts and is nervous about all of this. Sylvia is up and out of her bed. She used a sliding tilting table twice today. She is able to flex her knees and almost has her feet flat on the floor. They don't have her standing straight yet, but close. Her pain is better and she is using less of the supplied O2. The pain medication has been cut back. She is eating regular food and looking better.
I think Sylvia is better today; Sylvia's mother and brother are here early this morning. They stayed in the A & A Hotel last night. We get to Sylvia's room at 10:00. The doctor says Sylvia's lungs are doing well. Sylvia is on the tilting table again today and is almost vertical (55 degrees). She stands like that for almost twenty minutes; three times as much as yesterday. Later in the day she sits in a chair for 70 minutes and eats her evening meal sitting up. She might be leaving on Wednesday for either Good Samaritan or Mary Brigh 3; they are not sure yet which one.
Jon and I are leaving early today (6:30) we want to be there when the doctor comes. When we get there the doctor has already been there. Sylvia has a hard time with the tilting table and is very afraid and in pain. Looks like discharge will be Tuesday or Wednesday. Jon and I go out to lunch and when we get back therapy has already been there and Sylvia did well this afternoon. Sylvia is doing better in bed and has a good afternoon. Later when we are going to leave she has pain and discomfort. Jon and I leave at 7:00.
Sylvia's mother goes with me today and Jon is going to the cities for work. When we get to Sylvia's room we find out she is being discharged today. She is going back to Good Samaritan. When we arrive at Good Samaritan Sylvia wants to lie down. I leave after Sylvia is comfortable and take Sylvia's mother home. I go home and find the bunny boots that Sylvia used to wear at night in bed to keep her feet from dropping. I make the beds from Sunday night (12-28) and clean up. I am back at 4:30 and Sylvia is still lying down. I go to the kitchen to get her food and talk to people about Sylvia; they all are concerned about her and wish her well. Jeff and Jason are here and stay for awhile. I have the nurse take off Sylvia's wraps and stocking so I can rub her legs and put on lotion. I leave after the aids have helped me put Sylvia on her side.
The day is upsetting for me. Sylvia and I go to the therapy area to see when she will start her therapy. The orders haven't been received yet. We go back to Station One and ask the nurse about it. The person in charge says she hasn't got them copied yet, but she will. Later I go back to therapy to see if they have to doctor's orders and they do, but haven't done anything about the Continuous Passive Motion (CPM) machines for Sylvia's legs.
I talk to the person in charge of therapy and she makes a call. The machines will be there today. The machine (only one) arrives at 6:30. There should have been two, one for each knee. It seems that my job is to make sure other people do their job. I go home and watch TV with Jeff and Jason. I wake up at 10:30 and find they have left. There is a note saying they went to a party. Hope they are careful. Jeff and Jason come back here at 11:30 and neither one should be driving. After a little argument with Jeff I take him home with his truck and then come back home. I lie in bed and turn on the TV; but there is not much to watch. And that is how 2003 ended for me.
Chapter Fourteen: After knee surgery
Today is the first day of 2004; the beginning of another year. The last 12 months have been stressful. Sylvia went from living at home to respite to fulltime nursing care and finally having knee surgery. I don't think she will ever come home permanently. She has pain in her legs and knees. It seems like the right knee is worse that the left knee. I try to work with her legs and Sylvia does pretty well. Renae the station one nurse helps Sylvia and also works with her legs. We are trying to get them limbered up and ease the pain from the surgery. It is painful for normal people to recover from knee surgery. I think since the stroke Sylvia is more sensitive to pain. It can be a normal reaction after a stroke.
Therapy came and worked with Sylvia this morning; they had both of her knees bent at forty-five degrees. They came back at 3:30 and Sylvia was able to sit on the edge of the bed and then stood up four times with help from Anne. I think Sylvia is getting better, the pain in her muscles still comes and goes and the right knee hurts, but I think she is improving.
The nursing staff has her on the CPM machine. They do one leg and then the other. Therapy worked with her today bending her legs back and then having her move her legs out. Therapy also had her stand from the edge of the bed. I spent breakfast lunch and dinner with Sylvia today. I had a conversation with one of the kitchen staff. She told me that she got in trouble one day because she spent too much time talking to the residents. What a joke. I know the workers have to do their job, but I think part of their job is having conversation with the residents. Some of these residents never get visitors from the outside.
Sylvia is having trouble this morning; she has a problem with her right arm jerking once in a while and she seems a little out of it. It must be her medication. She said that she slept all night but when she got up she couldn't hold her urine and made a mess and spilled water on herself at breakfast. I talk to the nurse and tell her that I think Sylvia's medication is too strong because she is drowsy and not in control of herself. One of the aids said Sylvia was hard to wake up this morning. I think her morphine is making her sleepy and like she is intoxicated a little. Sylvia does well at therapy; she stands fairly straight. This is hard for her to do. At her bath tonight she has very little pain. When she is done I blow dry her hair.
Sylvia and I ask about a second CPM machine. I call the insurance case manager and leave a message. She calls me back about an hour later while I am at school. She says they are treating this like a new incident and both machines will be started. I go back to Good Samaritan at 11:00 and Sylvia is in pain from therapy. I go with her to the cafeteria for lunch and take her back to her room. Jason has been here this morning and the two of us leave. I stop and get two birthday cards for a couple of residents, both of these residents at Good Samaritan and nice people. I also get a card for my aunt in St. James; she is going on a trip to California to see her cousin. Both CPM machines are being used now and Anne is able to bend Sylvia's legs over 90 degrees with Sylvia's help. Sylvia also stands with Anne's help and did very well. I find out insurance is paying for part of Sylvia's room here at Good Samaritan. Therapy has to call in an evaluation to the insurance company on 1/13/2004. I hope and pray that all goes well and the insurance pays for more time.
Sylvia has a care conference today at 2:00 and I go also. It is kind of like a Parent Teacher conference for your child. It goes okay and not too much will change from it. I feel sad while I am at the care conference, talking about Sylvia, I don't think there is much hope left and I realize Sylvia wants to give up on therapy too. The therapy is hard work; I don't think Sylvia is mentally capable of motivating herself. It has been such a long battle, I feel like crying. I go back to school and then back to Good Samaritan to be with Sylvia for the evening meal. I leave by 7:00; Sylvia is going to have a shower. At home I go through the mail from the last few days and pay bills.
Sylvia's medical bills from Rochester alone total over $50,000. Then add in the Good Samaritan bills. Wow! Julie calls to see how the Ultra-Sound of my right shoulder turned out. It was okay and we talk for a while.
It is Friday, January 23rd; I am up early this morning and walk at the mall. Then I go to be with Sylvia for breakfast; she just finishes her breakfast when the PT therapist comes to get her. I leave to go home and finish packing because Jeff Jason and I are going to Jon's to do ice fishing. At 9:50 I pick Sylvia up to take her to the eye doctor to get her eyes checked and her glasses adjusted. Her eyes check out good with no new changes to her glasses. I have brought Sylvia's mother along just in case I need help if Sylvia needs to use the bathroom. After the doctor we take Sylvia's mother home and eat at Wendy's. I take Sylvia back to Good Samaritan and go to school to help with the local VICA competition. Jeff and Jason are coming at 3:00 to pick me up. The competition is not quite done, but I leave anyway and another instructor fills in for me. I feel guilty for leaving early, but we need to get on the road also. We get to Appleton, MN at 7:00 and meet Jon at Shooters. We have a drink and go to the ice house. Jon has his ice house parked by friends of his and we go over to their ice house and play a game called Cranium. We have a good time and don't get back to Jon's house in town until 12:30. I am tired and go to bed, but Jon, Jeff, and Jason go to the bar for a while and meet Troy.
The next morning Jon and I are up at 9:00 and Jeff and Jason are up later. Jon makes a good breakfast and then we get ready to go ice fishing again. We don't catch any, but did have a close encounter with a Northern Pike. It is relaxing and we teach Jeff how to play Hearts. Later some of Jon's friends come out and we play a new game called Mad Gab and another called Catch Phrase. I think Sylvia could play the Mad Gab game. Jon has a grill that we put on his heater and we cook food in his ice house. While we are in another ice house and Jason catches a fish. We leave for town at 10:30.
It is Sunday morning I am up at 7:30 doing school work on Jon's computer. Jon wakes up at 8:00, but then lies down to watch TV. Jeff is up also. Soon both are sleeping on the couches. Jason is upstairs sleeping. I continue to do my school work. It is a chance to get caught up for next week. Later when they are up we leave Jon's house and stop in Mankato at Sam's Club and see Sylvia at 5:00. Sylvia's mother and brother are with Sylvia. They leave and we take Sylvia to dinner. After dinner I show Sylvia the pictures and movies from ice fishing. We call Julie and I leave for home at 6:30.
Last Friday I left my van is at school because I rode with Jeff and Jason to Jon's house. So this morning I walk to school. It is a little over three miles to school. The weather isn't too bad, it has snowed but it is not too cold. When I see Sylvia I find out today is not a good day for her.
She is sad and depressed that she has to be here. She has to wait over a half hour to go to the bathroom. While she is in the shower I leave and get her Vicks. She has a cold. When I get back she is not straight in bed and her call light is not where she can reach it. It is just an accumulation of problems. An aid helps the nurse put the CPM's on. I leave for the night. On the way home I call Julie and talk to her. I explain to her that on the Saturday she and Chad were down and we had the disagreement, all I wanted them to know is how this has been the most frustrating and heartbreaking two and one half years of my life. She understands. I also understand that she can't be here as much as she would like to be.
At Good Samaritan today Sylvia is still in bed with the CPM's on, she is a little sleepy so I see the social worker. I fill out a form for Sylvia when she sees the psychiatrist on Thursday. I also tell her about Sylvia and her teeth not being brushed and the call light problems. When I get back to the room Sylvia is up and I can tell she is better today. We go to dinner and Sylvia talks with everyone. She tells me Sylvia's mother wants to know if everyone likes their presents. When I leave, I go home and take the Christmas presents to Sylvia's mother and brother. Earlier we had planned on getting together after Christmas, but that won't happen so I might as well give them their presents now.
Sylvia's appointment with psychiatrist went well. The only problem is me, I cried while talking to the nurse about all of this and explaining the history. The doctor is changing the Celexa to Lexapro. The Lexapro is better than Celexa. Back at Good Samaritan I talk to the social worker about last night and everything in general. She wants me to meet with the administrator, the director of nursing, and her tomorrow at 2:00 to discuss this more. I just want Sylvia taken care of well.
At noon my co-worker at Riverland and I met with our Dean for lunch to talk over things about school. It is just a brainstorming session with possibilities of moving a few programs from Austin to Albert Lea and vice versa. Our automotive program would be one of them to move to Austin. After that meeting I am at Good Samaritan meeting with the administrator, the director of nursing, the social worker and other nursing staff. The meeting was about me and my expectations of Sylvia's care and of Sylvia's quality of life. It was very hard for me to talk about it. At one time I just cried, I think I have kept a lot of my emotions inside for so long that sometimes all it takes is just the right word and I let go. I don't think Sylvia is getting any better. I don't think she will be where she was last January (2003). After the meeting I talk to the administrator for a while and he tells me the reason he didn't say much at the meeting is because if he did he would have cried also. He tells me that both his wife and he have come from alcoholic families. A person doesn't know what problems other people have; you think you are the only one hurting. Well anyway, after the meeting I see Sylvia for a little while and go home to check the mail. Then I am back at Good Samaritan to take Sylvia out to dinner with friends. We have a good time and don't leave Perkins until 8:00. It is very cold out tonight so I leave the engine on the van run (2 hours) while we eat dinner at Perkins and visit. I don't foresee meeting with them or them calling us to go out anymore. They are involved with their family a lot. I won't call them again either because I would feel stupid. If they want to do something then it is up to them this time. I don't get home until after 9:20 pm. I am tired, so I watch TV for about fifteen minutes and then go to bed before 10:00. It is not always easy to go to bed upstairs, so I sleep in the blue recliner in the TV room until 3:30 and then go to bed upstairs.
I am at a meeting at school and get a call on my cell phone. The number is blocked but the person calling leaves a message. When I check later it is the social worker from Good Samaritan and she wants to meet when I get there tonight. When I arrive at Good Samaritan I stop at her office. She tells me they are in the process of making new rules for the dining area. They only want one person from a family at a time at the resident's dining table. I think it is a stupid idea. A lot of residents appreciate having someone else to talk to. I will have to see if they enforce that ruling.
I know Sylvia wants to be at home. If that were to happen, can I to take care of her? I am caught in the middle, I don't want Sylvia at Good Samaritan, I don't like driving out there every day, and I don't know if I can take care of Sylvia at home. I will have to leave it in God's hands as to what happens.
Jon called and he is coming home for a couple of days. The two of us visit Sylvia for breakfast and then go home. We had a lot of snow again and Jon helps me clean the driveway, sidewalk, and the roof of the house. Jon, Jeff, Jason and I go out for lunch together and then Jon and Jason go to see Sylvia during therapy. I have a meeting at school at 1:00 to discuss moving a program from the Austin campus to Albert Lea campus. Then my auto program would be moved to Austin. I am not really in favor of the switch. Therapy doesn't start until after 2:30 so I am able to be there also. After therapy we take Sylvia home. She hasn't been home since the day before the knee surgery. We have a nice dinner and then watch Sylvia's mother on KAAL channel six; she is up for the Jefferson award for volunteering.
Sylvia has a pretty good night, she is up once and then up at 7:00. Jon and I get her ready and we have breakfast. After breakfast Sylvia is tired and wants to lie down for awhile. She gets up at 11:00 and Jon, Jeff, Jason, Sylvia and I go to the mall and look at all the toys at the toy show. Jon leaves for Appleton at 1:00 and I take Sylvia back to Good Samaritan a little before 2:00. It seems a part of me leaves when Jon goes home, and also when Julie and Chad go home. I see Jeff and Jason almost every day so I don't have that same feeling about them.
Jeff cut his finger at his work last week and when he told me about the cut it made me shiver. I don't feel well tonight so I lie down for a while. I am not going back to see Sylvia tonight, Jeff and Jason are going out instead.
It is a busy day today; I walk at Health Reach; stop and see Sylvia; go home and write checks for bills; get the taxes done; stop at Jeff's work and give him a picture; mail the bills, do school work and wash the van; go back to Good Samaritan for the Valentines party; go home and clean up; and then back to Good Samaritan to get Sylvia to take her out for dinner with people from Riverland. We meet the Riverland people at Georges in Geneva. It is not as much fun as it should be. Sylvia has a hard time, partly because she doesn't know all these people and it is hard for her to concentrate with all the noise. One lady sat by Sylvia and talked to her a lot which was very nice. The food got cold fast and the Prime Rib was not as good as it should have been. We leave at 8:00 because Sylvia needs to use the bathroom. The one at the restaurant is too small to get a wheel chair into it. The place was crowed and in all the confusion of trying to maneuver the wheel chair to the exit, I forgot to pay my bill. When we got back to Good Samaritan I called the restaurant and made arrangements to pay tomorrow. I felt like a fool.
I have been thinking about buying a new van lately; the one I drive now is getting a lot of miles on it. The wheel chair lift is on the right side and from using the lift, the van leans toward the right plus there is only room for one passenger and the wheel chair. I go to the local Ford dealer to see what it will cost to buy a new Ford van. After that I go to Rochester to check on a new lift and check with Rochester Ford to see how much the van will cost there. Syverson is cheaper by a thousand dollars. I will have to think about it.
The first Wednesday of each month at Good Samaritan they celebrate the birthdays of the residents whose birthday is in that month. This is February and Sylvia has a birthday on the 28th. Sylvia's and I are at Good Samaritan celebrating Sylvia's birthday with her. I have decided to buy a new van. After the party I go to Syverson Ford and sign the papers for a 2004 Ford E150 which has to be ordered. In order to pay for it I will have to borrow money against the house. I will get a new lift also, and that way it will all work out better for taxes. After Syverson, I go home and then back to Good Samaritan for awhile. After Sylvia eats, Jeff and I go out to eat at Applebee's. Jeff buys my meal. I go back to Good Samaritan and stay awhile with Sylvia. It is hard to get Sylvia situated in bed again tonight, but not as bad as Monday night. I leave for home after 8:00.
Friday, February 20th; Sylvia has an appointment with the knee surgeon at the Mayo clinic. The weather isn't very good today so we leave earlier. We have to be there at 8:45 for X-rays of Sylvia's knees. We have an appointment with the doctor at 10:45. Sylvia has had trouble with diarrhea lately and today is one of those days. Before her appointment, Sylvia needs to use the bathroom.
It is too late and I have to throw Sylvia's underwear away. Later I buy her a new pair of pants since hers are damp. The doctor is pleased with her progress and wants therapy to continue. He will write a letter to the nursing home. We meet my cousin at Red Lobster for lunch and have a good time. Sylvia's mother is with us and her meal is her Valentine's Day gift from Sylvia and me. The weather and the roads are worse on the way back; there are cars in the median and the ditch. One car was turned on its side. I am glad to be back safe. Sylvia is tired and lies down right away.
It is February 28th; Sylvia's birthday. Sylvia spent the night at home and slept all night without getting up. We have a light breakfast and then have a big lunch with Steak, Salmon, Chicken, potato salad and a macaroni salad. Sylvia opens her gifts and we have cake. Later Sylvia, Jon, Jeff, Jason, and I go to the movie "The Passion of the Christ". Sylvia's mother and brother watched Maddison and Ethan while we went to the movie because Julie and Chad had to leave. After the movie we eat at Perkins with Maddison and Ethan. Back at home we watch the movie "Runaway Jury" and Maddison and Ethan watch the movie "Stuart Little".
Sylvia stayed overnight again last night. Jon said she had a bad night because she was up a lot. I didn't know this because Jon and Jason let me sleep. We have breakfast and then I take Sylvia back at to Good Samaritan at 12:30. Jon took Maddison and Ethan to Chad's parents' house. I was going to go to Mankato, but decided not to and go home instead. At home I work on a letter and then take a nap. I wake up at 5:30 and get ready to go see Sylvia. Jason is there with her and I stay until 7:45. Sylvia is tired tonight and goes to bed by 7:10. She has loose bowels again tonight so I hope that gets worked out.
Sylvia has an appointment with the physical medicine doctor at St. Mary's today. Sylvia, Sylvia's mother and I go to Wong's for lunch, then to the mall to exchange clothes, and then to St. Mary's. Sylvia is told that she may not get any better, but they can't tell for sure. We see OT and PT; the PT person gives Sylvia a hug. We leave for home and then go out to eat at Godfathers. Sylvia and I go for a ride and Sylvia is crying because she has to go back to Good Samaritan. I call Iris and talk to her about her daughter's baby. The baby was very premature, but is doing well and should be normal.
It may be that I have higher expectations for Sylvia's care than Good Samaritan can deliver. Today I meet with Good Samaritan administration. They think it might be better if Sylvia were at a different home because of how I feel things are going here. I think we should work it out and see what happens. I will have to use more diplomacy with the night aids. I don't tell my kids about this. The whole situation stresses me to the max. Jeff Sylvia and I go to church tonight and eat with Jeff and Jason at Applebee's.
It is Saturday the 27th of March. Sylvia and I are going to Chanhassen Dinner Theater to see the play "Cats". We get there a little before 11:00. Jon is on the way and gets there a little after 11:00. We all enjoy the play and afterwards go to Gander Mountain and then to the Burnsville Mall. I take clothes back and exchange some of Sylvia's clothes. She tries on some shorts just to make sure they fit. Jason comes up and we go to the Olive Garden to eat dinner and then went to Julie and Chad's house to stay overnight. Jon and Jason took care of Sylvia during the night and I sleep in Ethan's bed.
Sylvia is up at 7:00 and goes to the bathroom and takes her medication and then goes back to sleep for a while. Chad's sister had a miscarriage and Chad goes over to her house to take care of her daughter Alicia. Julie, Jeff, and I are up and talk for a while. Sylvia is tired and takes a nap after breakfast. We leave for Albert Lea at 1:00 and stop at Arby's to have a light lunch.
Sylvia is back at Good Samaritan at 3:00 and I go home to unpack and wash clothes. Sometimes I don't know who I should be. It seems like I am supposed to be a different person for each person I meet. My family, the people I work with, and those people in control at Good Samaritan. It seems like Good Samaritan doesn't want to do quality work, Sylvia's hair cut is an example.
Julie said they shaved her neck to short and I think she is right. All these little things add up into one big frustrating mess. On April 4th I will see psychologist so I can talk about all this to someone even if it won't change things.
I see the psychologist today and talk about my problems. He doesn't think I need any medication, but I may need to talk this out with someone else. I cry in his office, I feel like my emotions are like a balloon that is full of air, if you add much more it will break. I go see Sylvia and tonight I leave early (7:00). It is bath night tonight for Sylvia.
I am not going to Good Samaritan today. I am taking the day for myself; sounds selfish in a way. Jeff and Jason will go and see Sylvia tonight. At 6:50 am I ride my bike to school to do some work and then ride home. At home I clean the back yard and take the leaves to the waste transfer station. Stop at family medical to check on Sylvia's wheel chair back. I need to get the serial number so the correct one can be ordered. I also stop at Shopko to buy a propane tank for the grill.
Jon is coming home tomorrow and we are going to have a fish fry. I feel guilty not going to see my wife tonight; no matter what I do I am not really happy.
I leave the house this morning at 6:45 and take a walk. I walk down to the channel and then go to the Skyline restaurant and have breakfast; then take a short cut back home. I called Jon while I was eating and he is on the way. At home I clean the kitchen and floors and also vacuum the main floors. I started the eggs and potatoes to make potato salad for lunch. Sylvia's mother and brother are coming out for fish tonight. Jon arrives at noon. We watch movies and sleep a little also. For dinner Jon cooks fish on the grill. He really tries to help when he is home. Life is not the same anymore; it seems life has changed too soon for us. I am sad, frustrated, angry, upset, somewhat depressed, and just not in a good mood most of time.
Sylvia is glad to be home; but I know she will be sad to go back to Good Samaritan. I know that I can't take care of her at home and I also feel like I can't be at Good Samaritan either. When I was in high school; there was a show on TV called the Twilight Zone; it was about people trapped in a situation that they had no control of. That is what I feel like I am in The Twilight Zone.
Easter Sunday Church is at 8:00 today. Jon, Jeff, Jason, Sylvia and I go to church. Sylvia's mother is brings food over for lunch. I take Sylvia back at 2:00. Jon takes my van home and I will take his Explorer to school and have the students repair the heater system. The heater plenum needs to be replaced. In order to replace that part the whole instrument panel must be removed.
The new van is in and I take a ride in it with the mechanic who did the pre-inspection. I will pick it up on Wednesday. Jeff, Jason, and I have a meeting with the administrator of Good Samaritan. Our main focus is to make sure Sylvia has the best quality of life she can. I also talk to the social worker and they are going to move Sylvia to Station Four. She will still have a private room, but the help will be different and she will have a bigger room with a view looking outside.
Friday, April 23rd; Last night at 11:00 the phone rings and I thought it was Jon calling, it was Sylvia's brother. His mother had a brain aneurism on the way home from the Jefferson awards in Austin. She was riding with another lady and when the lady saw that Sylvia's mother wasn't answering her she pulled over to check her. Somehow they got to the medical center in Albert Lea.
Sylvia's brother said she would be taken by helicopter to Mayo and he was driving over. I hang up, but call him back and say that I will follow him over to Rochester. On the way there I call everybody. Later that day I came back to Albert Lea and put Sylvia into the back of the new van with Jeff's help and we went back to Mayo to be with Sylvia's brother.
We didn't get back to Albert Lea until 10:30. Sylvia's mother's condition was critical when we left. Sylvia's brother was staying at the hospital overnight. It was a long day. Today we drive back over and Sylvia's mother is doing better. Tonight when we leave she is talking better and has better color. Sylvia is relieved. Jon and I get home at 10:00 after dropping Sylvia off at Good Samaritan.
Sylvia has two doctor appointments in Rochester today, one for her knee surgery and one with her neurology doctor. Julie is meeting us at the Apache Mall; she is interested in seeing how well her mother is doing and will help me with transfers. While Sylvia is having her X-rays of her knees we see a friend of Sylvia's. Sylvia and she went to beauty school in Mankato. She has her son with and he is having an X-ray also. We meet the knee surgeon at 1:00 and he thinks everything is okay. Next we meet the neurologist and he thinks Sylvia is doing well for her condition. After the appointments Julie, Sylvia, and I eat at Wong's and go home. We were going to see Sylvia's mother at St. Mary's hospital but it is too late and Julie has to get back so she can go to work.
Last night I took my ASE recertification tests. Before going to Riverland to take the tests, I stopped and saw Sylvia. I finished with the tests at 9:15. While driving out of the school driveway Sylvia's brother called. His mother will be coming to Good Samaritan soon. I helped Sylvia get ready for bed and then went home.
Sylvia's mother was supposed to be at Good Samaritan yesterday but will arrive today. I am at school finishing up grades for the year. After 4:00 I see Sylvia; we go to Sylvia's mother's room to see her. It is hard to communicate with her because she still is not able to talk. Sylvia had her appointment with the psychologist today. The doctor told her that her family has concerns of Sylvia being depressed. That statement was upsetting for her. She doesn't think she is, but I think she is at times. Why not be depressed? Her life has been turned upside down. She will go back again on the 8th of June. Sylvia's brother is here tonight and visits with his mother and Sylvia and me for a while. I talk with a nurse for a while. I can't help but be sad; she lost her husband a couple of years ago. He was a good friend of mine. I talk with a nurse on Station Four and can't stop myself from crying. I have this overwhelming emotion at times. Sylvia gets her bath tonight and I leave for home after she is in bed and comfortable. At home I watch TV and fall asleep in the blue recliner chair.
This morning I ride bike for about five miles. I am going to a doctor and have my left elbow checked and have a blood test to see how my cholesterol is doing. I am going to ask him who I can see to talk to about my own problems in life. I am not mentally ill or anything like that. I just need someone other than family to explain my sadness to. Sylvia has an appointment with psychologist on the 8th of June at 11:15 and I have an appointment with another person on that same day, but mine is at 9:30. I will wait for Sylvia and sit with her in her session if she wants me too. I have to be in Austin this afternoon for the Riverland awards ceremony and graduation. I am staying for the graduation party at the Holiday Inn also. Jeff said he would be with Sylvia for a while tonight.
It is Saturday and I sleep later today. I don't get to see Sylvia until 8:30. As I walk around the corner she is there and I have a feeling of sadness come over me. I take her to breakfast and we talk. After breakfast we go into the chapel and talk some more. The Pastor at Good Samaritan comes in and talks to us and I start crying; I am sad today. We go and see Sylvia's mother and the Pastor comes to her room also. I leave at 10:00 and get Sylvia's mother a hanging plant for mother's day and bring it back; then take Sylvia back to her room and leave. I go to the grocery store and then home and have lunch. I clean out the eve troughs on the porch and then take a nap until 3:15. I ride bike to Jeff's house and back home before going back to Good Samaritan. I spend time with Sylvia and Jeff and Jason come out after dinner. I leave at 8:45 for home.
I am taking the van to the cities today so the new lift can be installed. Jeff is following and Jason is riding along him. I am not staying with Julie and Chad. I want to spend time at home to get ready for the rummage sale I am having at home this coming Saturday. I have to meet Sylvia at the dentist soon, Sylvia is having her teeth cleaned and checked. Change of plans, Good Samaritan did not take Sylvia, their mistake. I will take her on May 24th at 9:00.
Last night Jason and I had to go to Good Samaritan at 10:00 because Sylvia couldn't get comfortable. She was crying on the phone and said no one could do it for her. This morning I cleaned the house and started to get ready for the rummage sale on Saturday. I went through one closet and threw out old magazines but that is all. Sylvia has saved a lot of items about our children when they were in school. Some of it I will put into the scrap book I am making. I'll have to check the rest of the closets to see if there are more items that should go into the scrap book. I ride my bike to Good Samaritan this morning since my van is in Lakeville, MN having the new lift put in. Jason is going to give me a ride to Good Samaritan tonight and I will ride my bike back home again. On the way home tonight I stop at Iris and Gary's house and talk to Iris for a while.
Sylvia and I go out to eat with Jeff and Jason at Perkins. This is the first time we have used the lift with Sylvia. It works well. I just need to get used to it.
It is Friday and I am getting ready for the rummage sale. People are stopping before I am even ready because they see the sign on the ramp. I sell a few items and also get a bad check from one lady.
It is May 22nd, Jon's birthday; I call him and wish him a happy birthday. Jason is on his way to Jon's house. He is going to a party and spending a couple of nights with Jon, then will be back sometime Monday. Jeff, Sylvia, and I go to the A&W in Austin for dinner and then to Target. Sylvia buys clothes for Maddison and Ethan. Jeff buys household supplies. We go back to Albert Lea and see the new fountains in Fountain Lake. One of the fountains quit while we are watching them. We go back to Good Samaritan and Jeff leaves; I leave at 8:30 after Sylvia is comfortable in bed.
This morning I take Sylvia to the dentist for teeth cleaning and a checkup. I take my tool box to Sanderson Repair. I am going to work there this summer part time. It is a way for me to get current automotive experience. Jason gets back from Jon's house. He had a good time. I stay with Sylvia tonight until 9:00. We visited Sylvia's mother for a while also.
Today I work for a couple of hours at Sanderson Repair. In the afternoon I work on the Medical Assistance form and called a couple of insurance companies for current information. I buy a small cake and tacos for Sylvia and me. Another lady that sits with Sylvia during meals had her birthday yesterday; so we shared the cake with her. We eat in the conference room. I don't get home until after nine tonight. There is nothing good on TV, so I turn it off go to sleep by 9:30. At 1:30 I get up out of the blue chair and go upstairs to bed.
Today I walked to the court house to see if I could get a copy of the title to Sylvia's mother's house. Sylvia's mother had put Sylvia's name on the title and my lawyer needs to look at the title. When all this Medical Assistance is finished Sylvia can only have assets worth no more than $3,000.00. I went home and cleaned, then went to my insurance person and changed my insurance and investments. I took Sylvia name off as beneficiary and put on all the kids. Julie and Jon are coming home for awhile this weekend so I bought groceries. After that I went home and took a nap. Julie came down and we went to see Sylvia and Sylvia's mother and then brought Sylvia home for the weekend.
Julie and the grandkids go home and Sylvia and I are sad to see them go. Sylvia especially misses them. We had a good night last night and also today. I grilled food and we have a good time. It is fun for Sylvia and me to see the grandkids and our own kids. I wish, hope, and pray that Jon, Jeff, and Jason could find someone to marry. Maybe it will happen sometime. Jon, Sylvia, and I watch a movie tonight and also the Timberwolves playing basketball in the playoffs. They are playing against Los Angeles.
Today Jon, Sylvia, and I go to Perkins for breakfast. I have to get Sylvia up a little early because Jon has to leave by 9:00. We have a nice time at breakfast and Sylvia and I are sad to see Jon go home. I take Sylvia back to Good Samaritan and take her to Sylvia's mother's room and then leave. I go home and straighten up and then ride bike out to the State Park and back. I ride for over an hour and a half, plus I ride for 30 minutes in the afternoon. I am watching the movie Miracle and I am sad thinking about Sylvia and what she is missing. She misses being with her children and grandchildren, going for a walk or a ride in the car, anything that was enjoyable to do for her seems to be lost. I know she has happy times, but they seem few and far away. I can't help but be a little depressed. Why wouldn't I be? I look at the clock and it is getting close to 4:00; I know that soon I need to leave and go see Sylvia. I know she looks forward to me being there and sometimes I want to just stay home. I don't tell her that. It is almost like lying in bed and knowing that you have to get up and go to work but you would rather stay in bed and either sleep more or watch TV. It is a bitter-sweet thing, I know I have to go, I want to go, but I also want to stay home. I am tired of it all. I know Sylvia is sitting out there and needs the company; so; I go!
Sylvia is still in bed when I get there at 4:15. She gets up and we look at pictures on the camera. She doesn't like the food tonight so I go home and make her tomato soup and a ham and cheese sandwich. I get home at 8:00 tonight and feel guilty for leaving.
Memorial Day: I see Sylvia at 10:45 and see what Good Samaritan is having for lunch. Sylvia doesn't like any of the choices. I take her to the Northbridge Mall to eat fast food while we wait for the movie "The Day After Tomorrow" to start. Sylvia needs to use the bathroom. I try to do it myself, but Sylvia has diarrhea and I will need help. I call Jeff and Jason; at first neither one of them answers; then Jason answers and comes out to help. We enjoy the movie and I take Sylvia to the bathroom again by myself after the movie. This time it works okay. After the movie I bring Sylvia home for a while for a better dinner. On the way home I call Julie and work out of the details for the trip to Illinois for my niece's wedding in July. Sylvia and Jason watch a movie on TV and I make dinner. When I take Sylvia back we watch TV and then she has her feet soaked in Epson salt because her big toe is sore. I don't leave until after 9:00.
I am fortunate in that I have three boys and a girl in my family. I think I have become closer to my children than I have ever been. They are my life. Each one of them has been instrumental in some way in the care and welfare of their mother.
Chapter Fifteen: September 16th 2011
I love my wife and I miss the quality times I think we could have had these last years. We could have traveled together. I get frustrated with her at times, but I also know she has a hard time living her life. I am sure I have said it before; there are times that I feel lost. I am torn between what I do for my wife and what I think I should do for her. At some point, I have to accept that I am doing what is reasonably possible for me. And that is the way it is.
On the morning of Friday the 16th of September 2011 I walk the bike trail with friends and go to breakfast with them. After eating breakfast a friend and I go to Home Depot. He needs to get supplies so the two of us and Truman can install a lamp post next to his driveway. Later today Sylvia and I meet Marva, Truman, and Jerry at Perkins for dinner. Our granddaughter Chloey is staying at our house because her parents are on a honeymoon in Jamaica. Chloey is at the football game with two other girls. While we are eating she calls and says the coat I brought for her to wear at the game is too big. I can't do anything about it now, but after eating I can go to her house and get a different one and take it to her. Sylvia thinks Chloey is taking advantage of me. I don't think so; after all I would do the same for Maddison. I take Sylvia back to Good Samaritan and go to Chloey's house to get a different coat for her to wear at the game. Back at home I wait until it is time to get Chloey from the game. She calls at 9:00 and I get her and two other girls to take them home. Chloey and I get home at 9:45. I ask Chloey if she wants to get up at 5:30 tomorrow morning and go with me to breakfast at the B & B. She says yes.
I usually have breakfast at the B & B every Saturday with four other guys. I wake Chloey and we go to the B & B for breakfast. Chloey is still tired and while us guys talk, Chloey puts her head down and gets a little extra sleep.
At 9:00 we are at Good Samaritan to get Sylvia to go to Lakeville and watch Ethan play football. After his game we will spend time at Julie and Chad's also. I wanted to leave at 9:00, but Sylvia was still eating breakfast; then she needed to use the bathroom before leaving. We finally leave a little before 10:00 and get to Ethan's game by 11:00. The game had just started. It is cold day; 55 degrees and windy. Ethan hurt his right leg last Thursday at a game and he is favoring it today. For today's game he stays on the side lines most of the game, but plays a little. His team loses. After the game we have lunch at Julie's and visit. It is not a good visit really. Jeff, Julie and I talk with Sylvia about all these things that bother her and me as well. She thinks Chloey is taking advantage of me. I treat Chloey just like I would treat Maddison or Ethan. She is my granddaughter even if she doesn't have Jason's last name. Another problem for Sylvia, it is difficult for her to accept the fact that Chad's brother lives with Julie and Chad.
Sylvia would like to see the movie "The Debt". Chad uses his iPhone to check for show times. The Lakeville Theater has a showing at 5:10. We will go and Julie will bring Chloey to the theater when the movie is over. Chloey is spending time with Maddison and three of Maddison's friends.
The movie is based on a true story. It is about three Israeli secret agents in 1967 that capture a Nazi War Criminal and try to get him out of Russian Berlin for trial in Israel. The movie is good. Both of us enjoyed it.
After the movie I get Sylvia loaded into the van and call Julie to say we are waiting. While waiting, Sylvia brings up the fact that Matt lives with Julie and Chad and she thinks Julie lied to her about it. Then she brings up that Chloey is taking advantage of me. I say to her "Well you have the right to your opinion but it is up to Julie and Chad if they let Chad's brother live with them. He has to pay rent and Julie is his guardian. They would do the same for any of our boys if that was needed. I also say that Chloey is our granddaughter and we should treat her like that." It is a mute point.
Sometimes she says negative things about all the kids. I am not sure why this is, but that is how it is and it frustrates me and makes me angry at times. Sylvia asks, "Do you still have the movie tickets?" "No, I threw them away, why?" "I need to use the bathroom" she says. That statement upsets me. I ask her, "Why didn't you say something while we were in the movie theater?" Now she is upset because she thinks she never does anything right.
It is partly my fault. I should have asked her before we went outside and put her into the van. It gets complicated sometimes. We wait for Julie to arrive and take Sylvia into the movie theater to use the bathroom. While in the bathroom Julie says to her mom; "You shouldn't be so hard on dad, look at all he does for you." There is no resolving this issue. Sylvia just reverts back to she never does anything right. After Sylvia is in the van and the doors are shut I explain to Julie, "This is why I am tired of your mother. It is sad to say, but she drives me crazy sometimes. Nothing it seems is ever good enough." Julie gives me a hug, we say good bye and I drive to Good Samaritan. Chloey and I take Sylvia to her room and leave for home.
On Sunday morning Chloey and I go to church and then to breakfast at Perkins with Jeff, Marva and Truman. At noon we get Sylvia and met some other friends at Perkins for lunch. It seems like Perkins is the only place in town to eat. I think I might even be on a first name basis with some of the wait staff here. We even sit at the same table most of the time. We have a good visit and Sylvia is back at Good Samaritan by 2:00.
At 4:50 Chloey and I are back with Sylvia. We push her to the dining area. Sylvia has a headache tonight. The headaches seem more frequent lately. I am not sure why. As she hears the food choices she doesn't like any of them. She settles for two cheese sandwiches, a bowl of tomato soup, and a bowl of pudding.
Chloey is checking to see how much it would cost to drive to Chicago and back. She thinks she might go there when she is sixteen. Then she might go to Nashville, TN. I am using the Google map function on my phone to check the miles needed to drive to these places and then she figures out how much it will cost. It is a good math problem for her. We talk with the other two ladies at the table also. As we are doing this I watch Sylvia eat her food. She dips the sandwiches into the tomato soup and takes a bite. She does this until each sandwich is gone. I pour the remaining soup into a cup and she drinks it like coffee. She complains about the headache. I can see the pain in her facial expression. She has enough to eat and doesn't eat the pudding. I watch her struggle eating; I remember yesterday afternoon when I was upset with her. Now; I am sad for her. This person that I love can make me so angry, but also make me so sad. I think this watershed stroke has not only changed her physically, it has changed her mentally and emotionally as well.
I send a text to Julie telling her the same words about being angry and then sad. She sends a text back. "Ya; I know." It makes me sad to see my wife this way and it is difficult for me not to cry, the tears start to form in my eyes. What a predicament to be in. The lady to Sylvia's right asks her, "Do you want to have an ice cream cone with us?" Sylvia says no, she is full. Chloey and I take Sylvia back to her room and she gets medication for her headache. Chloey and I leave her room to go home. As I leave station four, the nurse asks me a question. I don't even remember what it was. I still have the teary eyes but try to hide them from the people sitting behind the desk. While I answer her question; and I don't remember how I answered; I continue to walk toward the door. I don't want them to see the tears in my eyes. Chloey and I go home.
Chapter Sixteen: Epilog; 2011
At this time Sylvia continues to be a full time resident at Good Samaritan and that is the way it will stay. She doesn't like her living arrangement and is quite vocal about it to me. Most every time we return from an outing she says "I hate this shit hole. You don't know how much I hate being here.", yet she likes all the workers at Good Samaritan. In some ways she is fortunate for the misfortune she is in. She gets out frequently and interacts with family and friends.
I don't like the living arrangement either, but what can I do? There is no alternative that works for the two of us. Each day I struggle with what I should do. I am constantly thinking about how I can involve her in my daily activities that she would like to do. The problem; she can't be involved in most everything I do because I need extra help to take care of her bodily needs or there is no way a wheelchair would work where I go; logistically it's impossible.
If you need to be hospitalized, you realize that there will be a short recovery period afterwards and you prepare yourself to work hard for a short time. It is similar to preparing yourself to run a short race. I can make an analogy of the care giving I have done for my wife to running a foot race. At first you prepare for a short 100 meter race, but as you approach the finish line you realize it has been pushed farther away from you and now it becomes a 200 meter race. As you approach the 200 meter finish you realize the race has been extended to 400 meters; then 800 meters; then 5000 meters; and then you find out you are doing a marathon with no end in sight. I wasn't prepared for this and I just can't run fast anymore. I have to pace myself if I am to make it to the finish line of the race I am in.
With all this turmoil that surrounds me, it is hard not to have a certain amount of anger well up inside of me. It is difficult to do, but I have to try and not be angry anymore. No matter what, there will always be a blend of anger and sadness within me throughout these chaotic times I am in. Even with the anger and sadness that overwhelms me at times; I have come to enjoy each day that God gives me. Every day God paints an ever changing picture for me to enjoy. I am surrounded with all this beauty.
So what will I do? I will get up every day and take time for me. I will do my photography, walk with friends, sing with the church choir and the Careyaires, do my writing, and attend my writers group. I will let Jesus guide my path. I will put my faith and trust in Him. After all, who knows better than Him? I realize I need to take care of myself also. Plus I want to be around many more years to be with my family and watch my grandchildren grow up. They are important to me.
For my wife; I will continue to do what I can for her, visiting every day, going with her to the doctor, taking her out to eat, taking her for a ride in the country, camping in the summer with family, and other family gatherings.
In the future I may write another memoir. Writing this one took over my life for a while, but it was worth it. If I do write again I will to make the grammar better.
Life goes on!
Chapter Seventeen: Sylvia's Time Line
Friday 8/17 I take Sylvia to Albert Lea Hospital emergency room for a severe headache.
Saturday 8/18 I take Sylvia back to the emergency room in Albert Lea. Same problem.
Sunday 8/19 Albert Lea ER; the Doctor admits Sylvia to Albert Lea hospital. Later he refers Sylvia to St Mary's ER in Rochester MN. Sylvia is admitted to St. Mary's neurology floor in the Domitilla building.
Monday 8/20 through Wednesday 8/22 many tests are performed with no good answer.
Thursday 8/23 Sylvia is sent home with four medications.
Friday 8/24 Sylvia is back in the Albert Lea ER
Saturday 8/25 Sylvia is back in the Albert Lea ER; ER doctor sends her back to St. Mary's.
Sunday 8/26 Sylvia is at St. Mary's hospital. Sylvia still has some headache but is better.
Monday 8/27 Doctors are still not sure what is wrong.
Tuesday 8/28 Neurology doctors think Sylvia should have the heart surgery.
Wednesday 8/29 Sylvia has heart surgery; she does not recover well. Stroke!
Thursday 8/30 through Wednesday 9/26 Sylvia is at St. Mary's hospital trying to recover.
Thursday 9/27 2001 through Monday 12/31 Sylvia is admitted to St. Mark's nursing home; Austin MN for recovery and therapy.
Tuesday 1/1 through Tuesday 1/22 Sylvia is at St. Mark's nursing home; Austin MN. Occupational and Physical therapy have stopped' the insurance won't pay anymore.
Friday 1/18 Sylvia has an appointment with the neurology and therapy doctors at Mayo Clinic.
Wednesday 1/23 Sylvia is admitted to St. Mary's Hospital for intense therapy.
Wednesday 2/13 Last at day of therapy for Sylvia at St. Mary's Hospital.
Thursday 2/14 Valentine's Day; Sylvia is admitted to Good Samaritan Day One.
Thursday 2/28 Today is Sylvia's 55th birthday.
Friday 3/15 Sylvia's last day as a full time resident at Good Samaritan nursing home. I will use adult day care and take care of her at home.
Saturday 4/13 A benefit is held for Sylvia today to help pay medical expenses.
Tuesday 6/11 Sylvia is admitted to St. Mary's Hospital for two weeks of intense therapy. After hospitalized therapy I drive her back and forth to St. Mary's for therapy every day for awhile and then three times a week until school starts in August.
Sunday 7/14 My (Roger) mother dies.
Wednesday 7/17 through 7/18 Julie and I drive to Illinois for the funeral of my mother.
Friday 8/23 school starts for me and adult day care for Sylvia.
Monday April 14 Sylvia at Good Samaritan for respite care; respite turns into full time resident care.
Tuesday December 23 Julie's birthday, Sylvia is in Rochester getting ready for knee surgery.
Wednesday December 24 Jason's birthday
Tuesday December 30 Sylvia is discharged from St. Mary's hospital. After being released from Methodist hospital; Sylvia is going back to Good Samaritan for therapy and will continue to stay there as a full time resident.
2004 and beyond
Sylvia has been a part of Albert Lea Good Samaritan since Valentine's Day 2002.