Each day Al got weaker, not only in body but mind. He was becoming confused. He complained a lot of not being able to see well. Twice in six months I took him to see his eye doctor and I heard the same thing each time.
The muscles behind the eyes were not able to focus as well as before. This was causing poor vision. With Al’s other medical problems there was nothing the doctor could do for him.
I could do something for him though and I did. I invested in a much bigger television for him. Every Sunday that I can remember, Al read his Bible, so I purchased him the largest print Bible I could find.
My heart just melted when I received the biggest smile from him. He could read it and he loved it. Al was a very routine guy. I think most of this came from his mentality. He had grown up going to church and Sunday school on Sundays so when he could no longer go to church we both began to watch Joyce Meyers and Dr. Charles Stanley on the television.
Any other day of the week he showed no interest in God. With the illness quickly progressing I knew that it was time to try to change his view on routine. I explained to him that Joyce Meyers was on the TV six days per week. I told him, ” Bud, you even have choices. You can watch her in the mornings or in the evenings or both. Dr. Charles Stanley comes on twice on Sundays here. You can watch him in the morning and in the evening.”
He seemed to like that idea and so each day I would turn his station to either him or her and gradually he also began to read his Bible daily. I really didn’t have that much to do with all of this grand plan in his life. Al was able to read his Bible for a couple more months, and then I began to read to him since he could no longer focus. God helped life to become tolerable. I began to do something I had never thought of to do before.
I was determined that each day I would find something good about it. Whether it was seeing the sun peeking through a cloud or just watching the squirrels in our yard scrambling to find a piece of food, I would notice and I would smile.
By now, Hospice was involved. The waiver that had helped Al to come home provided help for me to care for Al. The illness was so strong that for a few months before Al passed away, I only went outside the house once a week and that was for groceries.
It is truly amazing when I look back to just a few months ago and see how much God had a hand in our lives. I had lost my father back in December of 2007. I began to care for Al in January of 2008, after his heart attack. I never began the mourning or healing process from our dad passing. I went straight to caring for Al.
It was a whirl wind of a life. It seemed that I had lost many friends from being inside so much and being out in the social world had vanished, but God sent angels to me and Al. Our caregivers were wonderful. Gina,Stacy and Faye were so good to Al and they cared and listened to me and held my hand while I cried.
Hospice came twice a week up until the last few weeks. They seemed to care about Al so much. His favorite nurse that came, Al had known for so many years. Hospice had many patients to handle, so they were never here long enough for me, but hey, I wasn’t the patient, but I felt like some days I was cracking up from his pain.
The Hospice always made sure Al had all the supplies that he needed. One thing about MSA is; it doesn’t sit still. The stages move very quickly. I would just get used to doing things one way, and boom, I was having to learn something new or a new way of handling the situation.
Al suffered from catheter issues, almost being blind. He went from feeding himself, to using heavy-weighted silverware, to finger foods, to me having to feed him. Then we went to mechanical soft diets, then to foods that consisted of soup, ice-cream or puddings.
While the MSA was moving forward and I could see so much on the outside, his insides were worsening also. He had big issues swallowing. He would try to swallow but the muscles in the throat were not working properly, so choking issues became huge. This is why the constant change of foods.
Being on such high doses of pain medications caused terrible issues with constipation. Every day he or I was asked if he went and more often than not the Hospice nurse would have to help Al to clear the bowels.
Al’s body became stiff through time. His limbs would not move with his help. Somehow the tremors always were able to move though. I remember once for a short spell Al wanted to get out of his bed. He had been bedridden for about a month at this time.
He begged and begged. One day when the caregiver was there she and I decided we had to show Al that he could no longer get up. She and I got on each side of him and sat him up on the edge of the bed.
All of us were scared as we watched Al’s body flop around like the commercial on TV where the fish is out of water. He had lost all control. Control of his urine, bowels, eating, just about everything he could ever do, he could not now.
She and I quickly laid him back down and got him covered up. I asked him, ” Do you still want to get out of bed?” He said softly, no, never again.