Daily Archives: June 20, 2014
Chapter 27
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It took a few days to get into a routine of caring for Al once again. With the help of some programs we were able to get Al a lift chair. He loved it. He was able to get in and out of it without my assistance.
To me, no matter what illness you have, independence is something that should remain strong for as long as possible. The one company that had been in Al’s life got involved with me and Al…
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Chapter 26
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…
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I Give You a Special Treat
I should be taking a shower, but I am just not ready to go in there and wash away what ever remains from the last 24 hours, so I decided to look at Stumble Upon. I was fascinated by the first page that was shown me.
I sometimes sit here and ponder on how a flea sized person like me can stand still and yet the world is quickly moving around me. Remember going through photos of family and friends…
Chapter 27
It took a few days to get into a routine of caring for Al once again. With the help of some programs we were able to get Al a lift chair. He loved it. He was able to get in and out of it without my assistance.
To me, no matter what illness you have, independence is something that should remain strong for as long as possible. The one company that had been in Al’s life got involved with me and Al again.
With the help from the waiver, this company was able to provide a transit bus to come straight to our front door. Al could be taken out to the bus in his wheelchair and with the help of the lift on the bus, Al was able to go to the Day Program.
In the Day Program, Al could be social with others like himself. He ate the packed lunch I prepared with his friends. He made crafts and made plenty of friends. But soon this died down as Al became more tired.
When Al had still been in the nursing home the staff recommended a Neurologist for Al to go see. This was for a second opinion. We went to the assigned appointment. Up until entering that door I had totally forgotten that we had seen this doctor once before, years back after he had his heart attack.
When we were entered into the data system and shown which door to go into to wait to see the doctor, I was still a little leery of this doctor. After all we had a Neurologist already. Our doctor was full of life and made Al feel at ease and sometimes produced laughter from him.
But on the other hand I wasn’t going to argue. Our Neurologist did not prescribe certain medications so Al was at a standstill. So maybe this doctor could add something to the recipe.
When the doctor walked in I recognized him immediately. How could my mind have slipped so bad? I place the blame on being a caregiver and dealing with so much all at the same time.
The doctor said hello and then turned to Al. ” How have you been since the last time I saw you Al? I can see there have been some significant changes since you were here before.”
I didn’t say anything to that remark. I guess I didn’t want him to realize I had forgotten who he was. Al smiled but didn’t say anything. By now, Al didn’t talk near as much as he used to. It was quite alright for me to do his speaking for him, although he was right there beside me in the room.
After doing some tests on Al he looked at me and said, ” I knew what was wrong with Al the first time he was here but I couldn’t say what it was because there wasn’t enough documentation per say. But now I am absolutely positive, your brother has MSA.”
I shot a look at the doctor. I was so surprised to hear this. Oh not that he hadn’t said these silent thoughts before but for the fact here I was in nursing for over 20 years. I had dealt with all types of illnesses in those years and had never heard of this.
I asked the doctor, ” What in the world is MSA?” He went on to explain, ” It is a neurological disease. It is similar to Parkinson’s Disease but there are a few major differences. For one, MSA,( Multiple System Atrophy) does not seem affected by the popular medications that are used for PD. Another difference is the brain loses contact with anything Al would want to do with his body. The memory stays in tact with MSA. Rarely is it ever lost such as in a PD patient. The last thing is the life expectancy. PD patients can live many years with this disease, but for an MSA the average life span is six to seven years.”
I looked at him but really didn’t say much. I glanced at Al to see if he had caught much of what the doctor had said. I don’t think he did. Al was more interested in going to lunch like I had promised him we would do after leaving here.
My mind was starting to roll like a train taking off on the tracks. What is he not telling me? What is this MSA for sure? I kept hearing six to seven years life expectancy. Looking back, Al had already had this terrible disease for five years now.
The doctor wrote some notes on a yellow sheet of paper and when Al and I were ready to leave the doctor handed me the paper. He patted me on the back and said, ” Read these notes. If there is anything or anyway i can be of help, please don’t hesitate to let me know.” I smiled and then wheeled Al to our car. We were off to lunch and I could tell from Al’s actions and words the doctor’s words didn’t sink in.
We went to Al’s favorite place, Zales Pharmacy. Al and I had grown up there I should add. Our parents had gone there it seems forever, so everyone knew us. The staff always made Al feel so special. They waved at him each time he went in and said hello. Different people would sit and chat with him while we ate at the inside luncheonette.
This time though I didn’t talk as much. I spent my free time reading the paper the doctor had given me. It pretty much said in easy words, that there was no cure for Al’s disease. That this disease could affect his already damaged heart. I was to make sure Al kept up with appointments at his heart doctor. The last thing he had written was how sorry he was that he had to give me this terrible news.
Chapter 26
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.
I Give You a Special Treat
I should be taking a shower, but I am just not ready to go in there and wash away what ever remains from the last 24 hours, so I decided to look at Stumble Upon. I was fascinated by the first page that was shown me.
I sometimes sit here and ponder on how a flea sized person like me can stand still and yet the world is quickly moving around me. Remember going through photos of family and friends and inhaling a deep breath as you see how people have changed? Obviously, you look at yourself in the mirror and see some change; but nothing like those folks in the photos.
We get so wrapped up in our minute activities, or at least I do. How do I feel today. Am I sad or am I starting this day off to a roaring thunder. Are the skies going to be a beautiful blue or are the threat of thunderstorms going to ruin my evening activities.
Is the world really round or since I can’t see the complete picture, could it be square. Did I wear this outfit already in the past two weeks. When is the last time I gave the dog a bath.
Bills due, food to buy, kids to take to activities, work is on overload, weddings to go to. Life can sure seem like great chaos at time and yet when we stand very still it feels like nothing is actually moving.
I read and hopefully understood that it is alright to share this page of fantastic photos with you. I didn’t see anywhere on the page that I couldn’t share, so here is something for your eyes to view, your brain to take in, and hopefully you will enjoy this as much as I did and want to pass it on. Enjoy my friends.
Who I am 