John & Judi
Family & Caregiver
John’s normal (55 yr. old) life one month before his stroke: He loved to work 11 – 14 hours a day! He was President/CEO of a Farmers’ Co-op in the Mississippi Delta. He was buying storage area facilities in several states; went to D.C. for a conference; family reunion; Church retreat where he and Judi discuss how much longer he should work before he retired. He said: “I think that if I keep on getting bonuses that we could probably retire in about 10 years!” Then on June 20, 1995 John had a massive stroke: he was left with Aphasia, (loss of Speech and Language ability); semi paralysis on right side; and the emotional part of the brain was stroked and he could not control his crying.
Judi’s life at 54: Began an after-school program for the neighborhood kids around our downtown church. First time for the children to come into our church to skate, snack and use VBS material. We had about 40 kids coming from the Boys and Girls Club. Oldest son was married and we had our first Daughter-in-love and our first granddaughter to visit in Kansas City. The other two sons were graduated and in their jobs in Dallas & Ft Worth.
The day John had his Stroke: June 20th John went to work even though he was taking an over-the-counter medication for a cold. Came home and went up to our bedroom about two in the afternoon. I came home and found him in bed and he said that he was dizzy. I went into the dressing room–pictures were off the wall and chairs moved around. I immediately called our neighbor who was a doctor and he happened to be at home. We both thought it might have something to do with his Diabetic II which had only been diagnosed 1& 1/2 years before today’s dizziness. He had John prick his finger and then told me to feed him some food; and then to prick his finger again in 2 hours. While we were waiting, our granddaughter (who was being potty trained) called to say that she had had a good day—she had not had an accident all Day! John went on and on congratulating her(his speech was fine). I went in to take a bath and when I came out, I asked John a question. All he could say was a “gurgling sound”! Our doctor neighbor came over and said that we would not wait on the ambulance for John to put on some warm ups. He did—standing on one leg—no balance of paralysis problem. He walked down our steps with his arms around Robert’s neck!
Hospital in Mississippi: Our doctor did not come because he was going on a vacation the next day and was letting the Emergency doctor handle everything! The cat scan did not prove anything. Friends were asking if John had been given the tPA shot which would help the blood to get through to the brain so that he would not have aphasia or paralysis. The ER doctor said that the tPA was too experimental and they did not give it to patients. I was so upset because I felt that if we had been in Houston, John would have received the tPA..(Later, however, I found out that John had an ischemic stroke plus a hemorrhagic stroke. If he had had the tPA, the extra blood could have killed him.—I knew the Lord was in control, and not me!)
The Sons arrived: Mike was in Kansas City; Jim in New York; and Joe was in Dallas—but they arrived by the next day. They stood around John’s bed in the Intensive Care unit and Mike said, “Dad you have always taught us to give 110% in everything we do; and for you to get better, you will have to give 120% and we are going to be sure that you do!”
Who is really in charge of John’s recovery? Because of my Faith I have always said that I knew that the Lord was in control of my life. HE had a plan. Did I believe that now when all my outside security had been stripped away—John’s good job and his good health? Thank heavens, when I prayed to God, HE seemed to say: “Judi, I loved John before his stroke, during his stroke and NOW after his stroke! Nothing had changed, The Lord was still in control!” We had no disability with this company (John had been trying to establish this for the company, but one employee had MS and John was trying to get him included in the policy!) At 54, I thought I might should go back to teaching so we could have money to live on. The boys said to me, “Mom, the Lord has blessed us with good jobs (lawyer, salesman, & CPA). Do not worry about money just use what you have and when you run out we will be able to help. They told me that my job was to help their Dad to be the best he could be by going with him to all his Rehabs. (Later, one son bought a company and “gave” us 10%!). It is amazing how the Lord continues to give us money when we need something special!
Blessings: One friend called and said that he & his wife wanted to pay to have John medi-jeted to wherever the best Head trauma rehab hospital was located. The boys did some research and found that Houston had one of the best, The Institute of Rehabilitation and Research (TIRR). Also, in Houston we would have support from family and friends. Another doctor friend called and said that he was on the Board at TIRR and he could get us accepted. Then our best friends called and wanted me to stay at their home for as long as John was in Rehab—coming home each night after dealing with John and his recovery to a familiar home and friends was such a blessing. Boys took turns coming every week-end for our 5 &1/2 months stay at TIRR. (Mike would bring Hanna Jane & she & I would go the Zoo and play!) The boys set goals for their Dad because they said that is what John would have done, if it had been them that had had a stroke! Jim & Janis had become engaged and Jim said that he wanted his Dad to be his Best Man at his wedding which meant that he would have to learn to WALK. Joe, too, had become engaged to Catherine and he wanted his Dad to be his Best Man, to say a Toast at the Rehearsal Dinner, and to dance with Catherine at the Reception! Needless to say, John worked hard and was able to meet their goals!
My Feelings: I found this note in my file on John’s stroke. After we arrived in Houston, we were supposed to have a consultation with all of John’s doctors after he had been there for 3 weeks. I wrote this note before that meeting: “I can only do all this with the Lord’s help—I’m very frightened—so many unknowns—I’m afraid nothing is going to be the same! Right now it seems like all of this is bad, but I know because of what the Lord can do through this situation & John & Me, we will be able to look back & see all the good that has come from it. I know the Lord is in control because I can see how His Grace is upholding me when I feel so helpless & isolated from a “normal” familiar life-style. I’m so blessed to have our 3 sons who love us so much. Great friends & family; great doctors at TIRR & therapists. Part of me says that I know God can restore John to good health & when HE does, we will give Him the credit; but if the Doctors’ tests show otherwise, I will have to think about other long term practical plans. I want to honor God in my actions and I don’t want to let Him down. I want to be positive about John’s recovery & not to begin doing & saying things which indicate that he won’t get better. I know God can do miracles! (The Lord did honor this desire because Sylvia, my best friend, who I was staying with, said that all our friends thought that the Boys and I could not have known John’s prognosis because we were too positive!) Through all of this I don’t want to let the Lord down in my witness for Him…but I feel very weak (I know the Bible says that when you become weak & seek God that mighty things can happen). I really don’t want to fail HIM…I want to Glorify Him! I need to be Up & Cheery” for John & I don’t feel that way. I know he can feel the way I am feeling. I’m not what John calls his “bubbly” wife.”
Doctors’ 1st prognosis: To begin with the Neurologist said “I don’t think you want to see John’s brain scans. There is swelling we are still contending with and much damage! He has aphasia, might eventually walk, but any extended walking he would need a wheel chair, and no use of his right hand & arm.” But to the Doctor’s defense they did say you can never underestimate John’s desire to get better (he is a fighter); the value of the love & support of a family; and that we knew who the Great Physician is and that God loved John & that he would guide us to help John to be the best that he could be! However, they set out a plan: Speech Therapy, Occupational Therapy, Physical Therapy, Music Therapy, psychiatry evaluation. Everyone who worked with John, loved John (even with all his cursing-brought on by his stroke) and worked very hard to get John to be able to go back to our home in Mississippi. After 4 1/2 months we went to outpatient status. We had a furnished apartment near TIRR that was owned by the First Methodist Church and we just paid a small amount each week – wonderful ministry. As we were leaving TIRR after 5 1/2 months, our Speech Therapist mentioned that we might want to take John to the U. of Michigan’s Residential Aphasia Program when he was a little stronger. That was our next goal. After Jim’s wedding in January, we would go to RAP!
Grand Mal Seizure: We came home around Thanksgiving. Then January 8th John had a Grand Mal Seizure. These sometime come 6 months after a Stroke! They put him on an anti-seizure drug and we went on to Jim’s January 10th wedding. The Lord is the only way John got through being the Best Man—the medicine made him very groggy! But he walked with his cane (with the help of Joe & Mike)!
Then in September we went to Session of 6 weeks at the Residential Aphasia Program (RAP) at the U. of Michigan in Ann Arbor. I had really prayed about who John’s main Speech therapist would be—I wanted someone strong who could get John’s attention. Did He honor my prayer request!!! He sent John, Carole who was only about 5 feet (she wore 3 inch heels) from New York. They had 5 hours of speech therapy, group therapy, and computer classes each day. At the end of our first week, we had our consultation with Carole. She looked at John and said, “John, you are not sick; you have had a stroke. Now you need to get up and get on with your life!” Then she looked at me and said, “Judi, you need to call the doctor and take him off these medicines—He cannot think clearly!” Wow! We both needed to hear her advice because we thought we were doing all the right things!
Changes in John: At TIRR the PT, OT, SP all asked what my “goals” were for John. I thought it was a crazy question; “I said I want John to be John again!” The Therapists and John worked very hard to make that happen. When we left TIRR, John could walk with a cane, and say a few words after 5 1/2 months. I drove to Michigan with John for his first 6 weeks session at RAP. Then John flew by himself to RAP for three more 6 weeks sessions. Carole helped develop his confidence in his abilities again. He was in charge of the Closing program during his last session—felt very proud of himself. Carole suggested finding someone to be a communication partner for John. One of our neighbors, Emil, came down one day & asked if he could come in and visit with John. We did not know him very well, but I was thrilled that he wanted to visit with John. After the visit I asked him if he might consider being John’s communication Partner. He said, “I’m 71 and a retired businessman; I have no knowledge of Speech Therapy, but I would be willing to try!” I had him call Carole in Michigan and she sent him suggestions on what to do each day. Emil came down every week-day for over 2 years until we moved to Kansas City. The Lord had sent us a wonderful Communication “angel”!
We also took John to the Neurological Retraining Center (NRC) at the U. of Wisconsin for more PT and OT. they videoed him and wrote out a program to help John for 3 months. Then we went back and they gave us a plan for 3 more months. It required about l 1/2 hrs of exercises each day for 5 days a week.
I learned a lot about being a Caregiver: I am not going to write everything that I have learned about being a Caregiver for a person with Aphasia, but just the ones that are so important. First, You must remember that the person with Aphasia is the same person inside in spite of outward differences. Also to show mutual respect in an equal manner – adult to adult – NOT adult-to-child or parent-to-child. If John can do something, let him do it. I will help him IF he can not do it! I had to learn not to feel guilty when I did activities that took me away from John because my well-being is just as important as John’s—especially to getting us through John’s recovery process.
The “new” John had bad manners: cough without putting hand over his mouth; drooling when he concentrated because of his medicines; just wiped his nose instead of blowing; it hurt him for me to cut his fingernails or toenails and he yelled at me for doing it; would not let me or sons cut his nose hair or ear hair; not wanting to use soap, just water in the shower; no toothpaste on his toothbrush. At different times trouble with urinating and bowel accidents. However, as I have already mentioned, John said curse words and used the name of God with them which still hurts “my heart” today because he would never have used the Lord’s name in vain before his stroke.
My adjustments: having to give John 2 insulin shots a day plus all his other medicines; having to do all the financial matters (Boys helped, too); not being able to leave him alone for about the first 4 months of being back in Mississippi; carrying all the suitcases to the car and packing; driving John to the front door and then parking the car. Even though I was having to make all the decisions for our marriage, John still felt like he was still in charge. The Lord somehow protected John and he did not see that I was the one really in charge! He was still the head of our family! Also, when the boys gave us money, cars, vacations, John was not prideful, he was thankful for their love.
Getting John back into society: Carole said that John needed to get out more. One friend took him to Rotary (cute story about John’s cognitive ability: the speaker said where he was from and Paul, John’s friend, asked the fellow on the other side what he had said. He didn’t know either—John said, “Greenwood”.) Many people thought that since John could not say many words that this meant that his cognitive was not there, too. This was not the case—his mental capacity was the same as before the stroke. Quote about being aphasic: “We are still the same on the inside, we just need to find a new window to the world!” We went to Sunday School & church, Wednesday night dinners, movies, and out to eat with friends once on the week-end.
One of the terrible problems for Aphasics is that they lose their friends because when they come to visit the person with Aphasia, they feel awkward since John could not carry on a normal conversation. I would see his friends at church and they would say, “John is one of the finest men that I know, but I just can’t stand to see him in this condition so I can’t come to visit him.” Or if John was standing by my side, they would look at me with sad eyes and say, “How is John doing?” like John was not even there. People would come up to John and introduce themselves to him like he wouldn’t remember who they were! I related these incidents to a speech therapist, Marilyn Marshall of Florida and she said, “Tell John’s friends that John is “inside” the same person, but because of his stroke, his heart has “unfolded” and now he is even more of a person! She said that she has learned that “imperfection” makes you into the person you need to be. Perfection can sometimes mean that you are just a robot. She also said that you don’t find “happiness” at the end of the tunnel, you find it along the way. John is in that “tunnel” and friends which represent “happiness” can help him along the way to get to the end of the his “tunnel”. I related this story to my Christian friends and said that John needed their friendship more now than ever before. This is why God has put us here: to help each other when we have needs!
Before John’s stroke, he would meet eight of his High School friends twice a year to play golf or hunt. After his stroke, he was apprehensive about going. But after going to RAP and staying by himself and getting his confidence back, he finally said that he would go again for their week-end. They treated him like John (most people wanted to treat John like a stroke victim — then friend. They kidded each other all week-end. He played poker and rode in the golf cart. Great time for all! They made him pledge to come each time they did these week-ends !
John’s quality of life after 18 years: Physically, John walks with a 4 prong cane; cannot use his right hand, but uses his right leg to walk; can dress himself except to button his left cuff on long sleeve shirt and putting on his right shoe with his brace. Learned to read again by reading 3 hours each day; learned to write with his left hand (I remember the day he could finally write his signature!) Has trouble spelling so he cannot write down his thoughts; however he can “say” most words if you give him enough time. After several years I wanted him to be take part in our financials each month. I designed a “cheat sheet” which spelled out the numbers he would need to write for our monthly checks. He loves being in charge of our check writing! He loves the iPad his sons gave him for his 70th birthday. After 5 years, John began driving again (after attending Rehabilitation Driving school). This gave him more independence and control over his life. He would drive to our sons’ company and enjoyed his sons and being back in a working situation. He says that he is Chairman of the Board! The boys call him their Good Will Ambassador. At Thanksgiving, 2012 we celebrated our 50th Wedding anniversary with our Family (18) at Big Cedar Lodge by renewing our wedding vows! John loves his FAMILY!
Something good from John’s stroke:
After John & I returned from his first RAP session, one son called and wanted to know how his Dad did and if I thought RAP had helped. I said, “Yes, because John and I both had seen how other aphasia survivors had gotten better and they kept saying that they were like John just a few years before. If John uses some of the methods that they had taught him and worked hard that he could get better—there is no “magic” pill, just a lot of hard work. Also it would take a lot of time to see one small improvement—but it would come!” But I told Joe that I was also sad because if we had not taken John to the RAP session, we would not have known this; and I wanted other Aphasia Survivors to know how to get better. At that time there was not any information on the internet on how to get better. The next day, Joe called and said, “Mother, the Aphasia Survivors are going to know because we are going to begin a Foundation!” Joe is a CPA so he set the ball rolling and in 1997 the Aphasia Hope Foundation (www.aphasiahope.org) was born! AHF is so pleased to have been able to guide so many Aphasia Survivors on their own road to Recovery
How John’s stroke influenced our 3 sons’ lives! I asked our 3 sons to write down their thoughts about how they felt when John had his stroke and now after 18 years.
Mike, 1st son: Thought his Dad was going to die; cried the whole way driving to Mississippi; Missed his advice: re-transition from law firm to Holland, raising kids, dealing with family in business, etc.; changed my relationship with my Mother as her personality became stronger and she assumed some of Dad’s former roles; caused my kids not to have as much time with grandparents as they were less flexible; But the time we did spend with my parents has taught my kids to be more empathetic and this can be seen in their ongoing friendships & volunteer interests with special needs kids; I changed roles with my Dad – financial & sense of being responsible for the entire family; my assumption of some of Dad’s roles has affected my relationships with my brothers & my Mother; made me incredible aware of my health & weight; made me have lots more insurance; did not shake my Faith.
Jim, 2nd son: Immediately my thoughts were: I was angry, why did the Greenville doctor not give Dad the tPA that would have started the blood flowing quicker and not caused him to have aphasia? I was mad at God for letting this happen to Dad, he was a great husband, father, and Christian.
First year: During the first year, I began to see God had a plan; that through the stroke, we all would grow closer. As your children, we were all over the U.S. and I believe this helped us recognize the importance of family and ultimately allowed us to be together! It helped me see you live out a life of sacrifice by serving Dad, who needed to be served. What a great model that reminds me daily that I should be modeling this to my wife, children & parents.
God also had a plan for us to start the Aphasia Hope Foundation in order to serve others that did not yet understand that there is life after a stroke…
Later Years: I have really missed having Dad to talk to in regards to life choices! What a great job you both did in raising Mike, Joe, and myself! I am honored to serve you and Dad on a daily basis! I am sure more thoughts will come to me & I will share them with you!
Joe, Third son: My Dad’s stroke and its impact on Me: Shock. Shock was the first feeling. I and we had no idea what having a stroke meant? I asked myself what are the short term and long term results.
In reflecting over the past 18 years, the results have overall been a mixed blessing.
On one hand:
Sure, Dad can’t give me his opinion verbally on all that is going on in my life. This is hard as no other man can really take this place in my life!
I miss the opinions of him that were very direct – whether I wanted them or not! I also miss his HANDWRITING me notes which is interesting to think about —That won’t ever come back.
On the other hand; There are so many blessings:
I have become even more of a FIGHTER watching him be a fighter! Also, I watch & admire his CHARM to all those who are around him. It is amazing to see how he can charm people and how people GRAVITATE to him. I want to be more like that and can see more & more how the things I do (saying “yes mam” to the McDonald’s clerk and “have a good day” all came from him.
Finally, we created the AHF which has blessed so may families through Hope. This has resulting in me thinking more about OTHERS than just our SITUATION.
Bottom line is God is sovereign and even though I miss the “verbal”, I can see God’s plan through this experience.
My view after looking back on these 18 years: Instead of relying on my Faith and seeking God’s direction on each of our steps for John’s recovery, I could have listened to my “practical and logical” mind which was saying: Judi, the doctors are not very optimistic (to say the least – the psychologist said I needed to become John’s power of Attorney – other doctors said he might not ever walk again or talk again); you will not have any disability money coming to you; we would need to put in an elevator or sell our home in Mississippi; should move back to the Houston area to be closer to family and I could help my sister take care of my Mom who had dementia. Also Satan was very active in my mind. He said Judi, you have taken care of your body so that you and John could travel and hopefully do some short-term mission projects and NOW all you will be able to do is to take care of John, an invalid, for the rest of your life! Several mornings I had to tell Satan to “go away, I’m not listening to you—I’m listening to God for my direction!” If I had listened to this practical side, I would have missed all of God’s blessings that he had planned for John, for me, and for our sons and their families. What is even worse – John, without all the Rehabs, would have probably ended up in a nursing home with no quality of life!
The boys thoughts made me realize that John’s stroke has caused our lives to have more pluses than minuses. God guided us through each Day because of the Faith we had in Him.
Quote from a Puritan prayer, “Valley of Vision”: Let not Faith cease from seeking you until it vanishes into Sight!
Romans 8:28: “For we know that in all things God works for the good of those who love Him who have called according to his purpose.”