The Story of MSA and my Brother
By, Terry Shepherd, his sister
It started seven years ago. My brother had a heart attack. Upon trying to return to his job he had for so many years we discovered he could no longer keep his rate that was expected of him and he was let go.
He was so upset and with his mental challenge, he didn’t quite understand what had happened and later turned towards himself; blaming no other but his own personal self-worth.
It was then that I realized that he needed more care than he used to. With the passing of our father less than three months prior, I moved into his home and began the journey of taking care of him. He was still able to drive and make decisions for himself. Through time I learned that he needed more help than I thought. He had emotional issues and physical handicaps. With the onset of a sudden seizure, I became more than his sister. I became his guardian, and then I was providing assistance with decision making.
The journey wasn’t smooth. We went over stones in the road. The heart attack led to a loss of independence. The driving was taken out of his hands. Heart Angina came next. Falls led to torn ligaments in his legs.
Emotional outburst and lack of comprehension brought Al to a first level of depression. Through the course of going from therapist to doctors he was put on a various amounts of anti-depressants. Nerve pills, and calming medications became a daily routine. Before I knew it his pill box was filling up quickly with medications I am not sure were ever needed.
With these types of medications being given there were definite side-effects, which in turn, brought more medications. It soon became a circus of which pills were going to be given or taken away. Al’s mood changed constantly.
He was smiley so often during the most of the years I cared for him, but then he could turn like the flip of a light switch. He could be rude and sometimes mean. Periodically, he would become a danger to himself and sometimes me.
Somewhere in the chaos of this he began to trip over himself. Once in a while he would fall down. I would take him to the doctor often. Most of the time he was diagnosed with that wide-open field of depression; but I knew there was more to it.
This went on for about a year and a half until one day the word Parkinson’s disease came out of a doctor’s mouth. For the next three years he was labeled with this name. Different medications were once again administered; but nothing worked or even helped.
There was Parkinson’s disease in our family and I did notice some of the movements, but still he didn’t seem like a true Parkinson’s patient to me. I kept taking him to doctors but once he was labeled it was hard to remove the title.
We eventually moved back to our home town and I took him to a neurologist that he had seen one time in the past. This doctor recognized Al immediately. He stated, “I know what is wrong with Al. I was pretty sure the first time I saw him but there wasn’t enough information to give him a positive diagnosis. After seeing him this time and giving him the tests I did, I am certain he has MSA, Multiple System Atrophy.”
I sat there dumbfounded. I had been a caregiver for numerous years. I had worked in hospital settings, a doctor’s office, and nursing homes. I was a Pharmacy Technician and yet I had never heard of this disease.
I was always an eager learner when it came to medicine and I was no different with my brother’s illness. I immediately went to work on the computer. I researched MSA for months. I read every book I could find on it. All of this helped of course, but never prepared me for what was to come for the next year and a half.
Al still walked but I instantly always had my hands out ready to grab him. He walked like he was a little drunk. Then the falls started. He fell so often I became concerned that I was not enough to keep him safe.
Sadly I made a decision to place him in a local nursing home. I just knew in my heart that with all the staffing he would get much better care than here at home, but I was wrong. At first things seemed so nice. Al was new to them and they were so polite in return.
But Al had two things against him. One was his age and the other was MSA. He didn’t act like the normal elderly person who sat and slept most of the day a way. He wanted to talk. He was a social butterfly. This didn’t go over well in a setting where most patients are quiet. It didn’t take long before Al was getting on staff’s nerves with his constant wanting to be friendly and talk with each person who passed by him.
The MSA was a big problem. No one knew about it. It ended up that I was teaching them about this terrible disease and trying to help staff to understand that Al was a different kind of patient. Things went from good to bad and I eventually knew that if anyone was going to take care of him and be as patient as possible, plus love him, it was going to be me, his sister, so I brought him home.
I set it up with a company who worked with clients with special needs that Al could go five work days a week for socializing skills. He was picked up by the company bus and brought home. This worked for a while and then Al was getting tired. We cut it down from five days a week to four, then three.
Al began to cry while he was there and soon he was sleeping more than awake. One day Al told me he didn’t feel well enough to go back so that placed him at home at all times. He was walking with a walker by now, but this didn’t last long. Soon he was in a wheelchair and within short months all he could do was take a few steps and sit in his chair the rest of the time.
Within two months he could no longer stand and was bed bound. He went from taking showers to bed baths. The energy left him quickly. He went from feeding himself, to spilling food, to me feeding him. He could no longer hold a drinking glass in his hand. Soon he could not drink even with my help. We went from straws to syringes of liquids. While I was doing my best at caring for him on the outer body, MSA was doing its best to tear him down on the inside.
It seemed each week brought new challenges. Sometimes and more towards the end Al could change from hour to hour. He went from being continent to wearing adult diapers. His head went into a locked position on its side.
Within a month Al could no longer move his arms or legs. I could see with the naked eye Al was being trapped inside of his own body. These drastic changes for Al all happened within a six month period. I was not only his sister. I was his caregiver and his voice.
He could no longer speak. We played different games for communication. We used flash cards, then blinking the eyes for a yes. Sometimes he could spell a word. Towards the end, all I heard was stuttering or a line of words that were mouthed without the lips moving.
He and I were very frustrated. When you lose communication it is devastating. I felt helpless and Al cried. I tried very hard to just know what he wanted. TV turned on at certain times, TV programs switched at proper hours.
Al could no longer eat food. He ate baby food, but I never took the food in the jar to him. I poured it in a bowl, added some adult seasonings and heated the main courses up. I never wanted Al to feel belittled or like a baby.
Al hated wearing adult diapers, but we had no choice. It wasn’t long before a catheter was inserted. This became quite challenging. The MSA would attach itself on the inner part of the catheter making it very painful to be removed.
Sometimes Al could talk out of the blue. He would tell me our deceased parents were there to see him. Twice he said Jesus was in the room. We talked many times about death. Al was afraid to die. He was worried about what was going to happen to me.
Al was one of the few who suffered from pain the past two years all around the clock. There didn’t seem to be any medications he could take that would dull the pain and we fought that until the day he passed away.
During the past month he was here, he begged God daily to let him go to heaven. He could no longer talk and moaned day and night. I changed his positions as often as I could. He could not go on his one side because of his head being locked in place.
He was losing weight so quickly. He started out with this illness at 297 pounds and when he passed, I believe he weighed 140 pounds. He pretty much quit eating. Once in a while he would request sherbet but would only eat two or three baby bites.
Al was rarely dressed. His internal furnace was stuck on high. During the winter months we had two fans running on him around the clock. The register was closed in his room. I remember many times sitting with him wrapped in a blanket while he laid bed bound sweating.
MSA had taken Al’s vision months ago to the point that everything he saw was blurred. The muscles couldn’t focus. By the time the last two weeks of his life were there, Al couldn’t see at all. He requested The Christmas Story over and over. He knew the scenes and words in his mind and so every day this DVD was played for him.
The last two weeks of Al’s life he was medicated as much as he could stand because his pain was so bad. I would notice that his left lung would swell immensely and then he would have terrible diarrhea following.
This went on to the last breath. It continued to happen more often each day. I started to notice a pattern and explained this to the professional staff that helped oversee Al’s medications. What happened is just awful. A most terrible way to die in my opinion.
If you have a weak stomach you may want to refrain from reading the next three paragraphs. What happened is the MSA was boiling inside of Al. It had eaten a hole in his ear. The infection was coming out of his eyes, nose and mouth.
Al ran high fevers at all times which were kept down to a little above normal temperatures with medication. The illness had nowhere else to go. It had taken up every living fiber of his being. The only thing left untouched was my brother’s memory.
I believe because of the medications Al was not aware any longer what was happening to him. The MSA ate a hole in his colon. The BM, bowls, spilled out of him and began to fill his one lung. This is where I had been noticing that Al’s lung was swelling so badly.
On the last hours of Al’s life BM filled both of his lungs and he aspirated to his death. In all my years of experience I never dreamed in a million years that there was an illness that was worse than cruel. It stripped my brother’s life and left nothing untouched but the memory.
It brought depression and anger to his life. Many days of what is happening to me, he would question. It stripped his smiles and turned them to tears and then a mask of nothing. It left him in a state of a vegetable, a human soul trapped inside of a dead shell. Then to end the tragedy he aspirated to death, stopping all organs, his heart and his breathing.
It was not easy taking care of this patient, my brother, but I was honored to have the chance to be with him through those seven years. Al had never told me he loved me in all those years, but a month before he died, he did. He told me, “I love you sis and I know you love me. You took real good care of me.”
I cried like a baby. Al and I both knew he was dying and there wasn’t a darn thing he or I could do to stop it. I held his hand nightly and read the 23rd Psalms to him. I prayed with him every day. He would ask me often, “Sis, please pray to God so he will take me home.”
I would hold his hand and cry and pray at the same time asking God to release my brother from his pain. To heal him and lift him in his arms and take him to heaven. God answered Al’s request on March 27th, 2014 at 8:30am.
I know he is healed and free of the terrible illness. I know in my heart he is watching over me now and he promised to save me a spot beside him in heaven. Knowing Al as I do, he is doing this too. I love you buddy. My heart still swells in pain but I am happy you are pain-free. You fought a good fight and I know you are sitting by God at this very moment smiling and chatting with everyone.