What I didn’t expect to happen when Al moved into the nursing home was guilt. Guilt surrounded me. Everywhere I went, every thought I had; guilt was there eating me alive. I went to see Al almost every day for the six months he was in there.
I ate lunch with him each time. Sometimes I went for supper or breakfast. I had been in the nursing field for over twenty years so I made several non-routine visits. Everything seemed to go well the first few of weeks.
Lots of attention was showered on Al. Staff coming into his room more than I had had dreamed, but then things calmed down, and then the storms started to brew. When Al went into the nursing home he could still walk with his cane.
Before Al had entered those big, front doors he had already spent three months here at home doing physical therapy with the staff from this nursing home. Al complained a lot from pain but I thought those old words, no pain, no gain.
I requested that he have no more therapy once he entered the nursing home, but somehow my feelings got over looked and therapy became a constant in Al’s life for the next several weeks.
What I didn’t realize, but was beginning to recognize was the more Al did his workouts, the more tired he became. His bounce didn’t come back like it does for the rest of us. With lots of studying and learning I discovered that after a certain point of having MSA, the muscles do not bounce back. They have the reverse effect. They begin to crumble.
Of course, at this point I did not know that Al had MSA, (Multiple System Atrophy). I was under the assumption he had PD, Parkinson’s Disease. Al began to sleep more but I thought this was due to the illness.
What I learned though was staff quit paying attention to him. They came and helped him for sure, but the extra time was not there anymore. He was becoming bored. With his mentality at age 10, these older folks that reside in nursing homes just plain weren’t keeping Al’s interest.
He did enjoy Bingo. He won treats which he kept stored up in his room. I always told him, ” You are storing these like a squirrel stores nuts for the winter aren’t you?” He would laugh and soon I discovered he was eating them at nights along with his bedtime treat staff gave him.
Now I always kept Al’s dresser full of treats. Anything from Reese’s cups, Twinkies, Granola bars, about anything he requested, and of course pop. It didn’t take long to figure out what was going on when the staff began to let me know of Al’s weight gains.
I had seen too many deaths in my career and always believed that if I was going to get a terminal illness, it was better to be on the heavier side. I know, this sounds crazy. We are supposed to eat lean and stay fit.
But I saw things in a different light. Knowing Al had PD, I wanted him to be as happy and content as he possibly could. I should just come right out and say it, I spoiled him rotten.
I knew what PD could do to his life and so I was determined to make the rest of his days full of smiles. In the end, I was very thankful that Al had gained weight. It saved his life for a little extra time.
So, back to what I was talking about. When I noticed Al was getting weaker and learned the information I did, I demanded therapy quit working him so hard. They did listen to me and turned to an infrared machine that they would place on Al’s sore muscles and help them to feel better.
They spent more time with him working his fingers to help them relax and stay flexible because of the nasty tremors. Al seemed to draw into himself a little more each day. I began to carry more guilt at how I was to blame for him being there, even if he did want to go.
I was about to go to the head of the company and make a request that I wanted to take him home for good. Before I could carry that thought out, staff came to me wanting to talk.
” I am afraid this is not working out. With Al’s mentality and his attitude changing I think he would be better off somewhere else.” I agreed and thought how easy she had made my own speech for me.
What I didn’t know is just in the changes he had already made it was going to be a little harder to care for him at home than I thought. Thankfully, some caring staff members opened my eyes to waivers. I had never heard of these before.
After careful explanations about the several waivers there were I decided on a particular one. The process began but it took three months, so Al had to remain there longer than I wished. The waiver I had chosen stipulated that the patient had to be in a nursing home in order to qualify for this certain waiver.
It was worth it though. When Al came home in June of last year, there were programs in place that allowed Al to still go out in the public with the aid of wheelchairs and ramps. When Al came home he was tired. I could see how much weaker he had become since entering the nursing home. Part of it was due to being more restricted in a room than the outings and activities that he and I had shared here at home. The other part was the illness.