Family & Caregiver
OUR FAITH SAW US THROUGH THE LAST 18 YEARS OF RECOVERY
On June 20, 1995, John, age 55 had a massive stroke and was left with Aphasia (loss of speech and language ability), semi-paralysis on right side and Pseudobulbar (also known as involuntary emotional expression disorder).
That day John had come home from work, complaining that he was dizzy. I went in to the dressing room and found pictures off the wall and chairs moved around. I called our neighbor who was a doctor. We both thought it might have something to do with John being diabetic. He had John prick his finger and for me to get him some food and then to retest. While we were waiting John talked to our Granddaughter which later showed me that his speech at that time was fine. A very little time later all he could do was make gurgling sounds. Our doctor-neighbor came again and had John get dressed as we were going to the hospital. John easily got dressed - no paralysis at that time.
At this time we lived in Greenville, Mississippi and we asked the ER Doctor for tPA. He said that he wouldn't give John tPA as it was still experimental. I was upset, thinking if we were in Houston, Texas; we could get it. Later I learned that because John had both ischemic and hemorrhagic strokes, if given tPA, the extra blood could have killed him. I knew The Lord was in control and not me!
Because of my faith I have always believed that the Lord was in control of my life; that He had a plan. Did I believe that now when my security (John's good job and health) had been stripped away?
I found a note that I had written, shortly after we arrived in Houston. In part I wrote:
"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 that the Lord can do awesome things through this situation. Someday, we will be able to look back and 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. I'm so blessed to have our three sons, our great friends & family; great doctors and therapists at TIRR. Part of me says that I know God can restore John to good health and 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. I want to be positive about John's recovery. I know God can do miracles!". Through all of this I didn't want to let the Lord down in my witness for Him, but I was feeling very weak. I really didn't want to fail HIM...I wanted to Glorify Him! I felt I needed to be up and "Cheery" for John, but I didn't feel that way.
During this time I had numerous Blessings:
*Our sons told me that my job was to help their Dad to be the best he could be and they would assist in making sure we were all right, financially.
*We had friends that paved the way for John to be accepted into the Institute of Rehabilitation and Research (TIRR) in Houston.
*Being in Houston would also mean we would have support from family and friends.
*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.
The Neurologist explained that John's brain scans showed extensive damage and swelling and that John had aphasia, that he might eventually walk, but for extended walking he would need a wheel chair, and he would have no use of his right hand and arm. What they didn't factor in was John's desire to get better; the value of the love and support of family; that we knew who the Great Physician is and that God loved John and that he would guide us to help John to be the best that he could be!
The Doctors set out a plan including Speech Therapy, Occupational Therapy, Physical Therapy, Music Therapy, psychiatry evaluation.
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 after 5-1/2 months, John could walk with a cane, and say a few words.
In September we went to the first of four 6-week Sessions at the Residential Aphasia Program (RAP) at the U. of Michigan in Ann Arbor. There he had five hours of speech therapy, group therapy and computer classes each day.
His Therapist, Carole, helped develop his confidence in his abilities again. After one week, Carole looked at John and said, "John you are not sick, you have had a stroke; You need to get up ad get on with your life!" Then she looked at me and said, "Judi, John needs to be taken off these medicines(so he could think more clearly)". He was in charge of the Closing program during his last session. He felt very proud of himself. Carole suggested finding someone to be a communication partner for John. Amazingly one of our neighbors, Emil, who was retired, came one day and asked if he could come in and visit with John. After his visit, I asked him if he would be that communication partner for John and he agreed. Emil came every weekday for over 2 years. 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 two 3-month periods. It required about l-1/2 hrs of exercises each day, 5 days a week.
I learned a lot about being a Caregiver to someone with aphasia. First, you must remember that the person with Aphasia is the same person inside and should be treated with respect. There were many adjustments made when becoming John's caregiver. From giving John two insulin shots per day and numerous other medicines, I also had to handle the financial matters. Initially, I wasn't able to leave him alone. Later, I had to pack both suitcases and carry them to the car. Also, I had to drive John to the front door and then park the car.
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 his, especially in getting us through John's recovery process.
One of the terrible problems for Aphasics is that they lose their friends. When friends came to visit, it was obvious that they felt awkward since John could not carry on a normal conversation. It is so important to remember that John is still "there"; therefore, to talk about things he use to like to talk about, and he would just nod.
John has great quality of life after 18 years. Physically, John walks with a 4 prong cane; cannot use his right hand; he can dress himself except to button his left cuff on long sleeve shirt and putting on his right shoe with his brace. He learned to read again by reading 3 hours each day; learned to write with his left hand. He can "say" most words if you give him enough time. John drives (after attending Rehabilitation Driving school). This gave him more independence and control over his life. He drives to our sons' company and enjoys being back in a working situation.
At the time of John's stroke, there wasn't any information on the internet on how to get better. I mentioned this to our son Joe. The next day, Joe called and told me we were starting a foundation; therefore, in 1997 the Aphasia Hope Foundation (www.aphasiahope.org) was born! AHF provides information on strokes, aphasia, and caregiving and provides guidance to Aphasia Survivors on their own road to recovery.
I look back on these 18 years and am thankful that instead of being defeated by the challenges, I relied on my Faith and sought God's direction on each of our steps for John's recovery. When confronted with dire doctor's reports, I would make myself stand firm on the promises of God.
If I had succumbed to despair I would have missed God's blessings that he had planned for John, for me, and for our sons and their families. I have clung to many bible verses during these 18 years but one is extra special to me and to my family:
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."
At Thanksgiving, 2012 we celebrated our 50th Wedding anniversary with our Family (18) and renewed our wedding vows! We are blessed!