Chapter 1, Introduction

Have you ever felt like you have just been run over by a ton of bricks? Or maybe you  just had enough and you don’t want to get out of bed; even when the sun is shining.

This is how Mary felt as  her alarm clock went off. Hitting the snooze button three times, she wanted to throw it across the room but instead sat up and turned the alarm off. Running her hands through her tasselled hair, her first thoughts were, life sucks.

For seven years she had been in a relationship with Brian. Seven, sometimes long years were actually the best years she had experienced. Brian was a computer tech over at the local college.

She had met him when she had went to the office requiring assistance with getting a computer program to work. She couldn’t take her eyes off of those big baby-blues. His smile showed perfect, straight teeth.

After spending some time getting her answers, she turned to leave and then looked back saying, ” See you later.” His question that followed started their relationship. ” How about after your last class tomorrow?”

She remembered so well telling him, sure, and before long the two were an item. She learned that Tommy had graduated college the year before and had received a job offer from the same place  she attended, White’s College.

His parents were both white-collar workers and Brian had told her he had wanted more out of his life. Someday he wanted a business of his own, repairing computers for big businesses.

He explained his shyness in school. Pimpled-faced, braces on his teeth, not really any girlfriends to mention. He laughed as he said, ” I must have been a late bloomer because one morning I woke up, and everything seemed different. The braces were gone, the pimples disappeared. I felt different and I sure looked different.”

Mary had been so proud of him for going after his dreams. She had thrown both of her arms around him and planted a kiss on his lips. She in turn told him a little about herself.

” Nothing really special, middle child growing up. I always seemed to be in charge of things at home. My parents both worked. I did alright in school, but  in  junior year, my thoughts began to change and I knew I could do better.”

Brian and Mary dated throughout the rest of her schooling. Upon graduation the two talked about marriage; but made no real plans. Mary was content with this. She was planning on working as a nurse and wanted to return to college to get further her degree.

Friday nights was date night. Sometimes they went out to eat and to a movie. Other times they walked through the mall. They had dinner with both sets of parents. Life couldn’t be any better than this.

Chapter 31

Al was not sleeping too much. He lost interest in the TV. He enjoyed hearing us read from the Bible to him. He no longer could listen to the ear phones because of the damage to his ear.

His skin became sort of see-through color. His nail beds had been gray for many months but now his hands were turning grey. Nurses and I always checked his feet because sometimes as death appears the feet will change in color.

I would check Al over with a fine tooth comb. I prayed for him to go to heaven but I fought for my own selfish reasons he would remain with me. I barely slept anymore. Except for the caregivers I took care of Al myself for these past seven years. My own body was fighting in a survival mode. I was always and will remain ever so thankful for my best friend Lezlie, who came to stay with me. I am not sure how long she stayed but it was several weeks. This allowed me to vent, and cry and try to rest.

My heart squeezed so hard for I knew in my soul Al was leaving me. There were two times that I mentioned to you earlier that Al spoke to me. I have no doubt that God allowed this to happen because I needed to hear what he had to say.

The first time was when I was in the living room. I heard his voice and I about tripped over myself from shock that he had spoken and raced in there. He said, ” Do you see him?” I replied, ” No, I don’t see anyone.”

” Right there, right beside you, Jesus is here. He says it is time to go home and to tell you that I am going to be alright.”

I grabbed his hand. Oh please hold on a second as I wipe my eyes. I can’t see the words I am typing. It is so fresh in my mind and my heart is  not yet healed. Alright, I am back. I took his hand and held it and I spoke for the two of us to God. I thanked God for getting Al and me through this. I thanked him for keeping me strong.

Al was very concerned about his coca cola and car collection. He begged to die but he was fighting it not wanting to leave his possessions behind. I told him, You take with you whatever you want bud. God will make room.” I think this made him feel better.

Pastors and Hospice staff, and myself tried several times to help Al pass on to the other side, but he was afraid. He didn’t know what to expect, but do any of us? Ideas had been exhausted. I believe that God planted an idea in my mind.

With Al’s mentality I went to his bedside. I told him I wanted to explain something to him. I started saying to him, ” You know how you and I always took our vehicles into the garage to get their oil changed? Well this is what God wants you to do. Get a body change. He will heal you bud, and make everything new.”

I saw tears flow down my brother’s eyes. I knew I had said it in a way he understood. Al cried and I cried. I sat with Al for hours, just holding his hand. I had Christian music playing in the background, and when he seemed tired of that I would put his favorite movie in the DVD player, A Christmas Story. Al would listen to that over and over.

He seemed to drift off so I left the room. I could barely walk from exhaustion and stress and my aching heart. I had sat down for about a half-an-hour when I heard his voice the second time.

I walked in to his room and stood by his bed. I picked up his hand and gave it a kiss. He looked right at me and said, ” Sis, I know that you took good care of me. I appreciate it and I love you sis. You should always remember that I love you.”

I bawled like a big baby. All those seven years I was never sure if Al saw me, his sister, or his dad in me. We had struggled as I said in earlier chapters, so when he said this, it was the best gift I  had ever received. I couldn’t let got of his hand. I just kept stroking it. He drifted off to sleep once again.

I sat with him for a while and then went back to the living room. My friend was asleep in the bedroom and it was very late. I decided to rest on the couch. I dozed off and on. Every time I woke I went in and checked Al.

The skies lightened up and day break had broken. I got up and went into check on Al and he was gone. My brother was gone. I just broke into the biggest sobs I had ever experienced. I stood by his side whispering to him how much I loved him.

Today, it has been three months since my brother passed away. My heart still feels a huge void and my home is very quiet. Friends have appeared and am helping me to get back out into the world, but it is hard. Sometimes I can go out and do pretty good. Other times I can’t and I come home to cry in my pillow. By the grace of God and my family and friends, I shall get through this. I will never forget my dearest brother, and I will never forget what a cruel illness took his life. My purpose of writing this book is to help others to not be as afraid as I was.

Changes happen quickly. You can not count sometimes from hour to hour what will happen. Make sure you tell your loved ones how much you care. Talk about the good things. Talk about the memories you shared together. Remember, the memory is not touched by MSA.

I love you buddy. I miss you but I know you are saving a spot for me in heaven, just like you promised.

Chapter 30

Now that I have told you where to go to find more information on MSA, I will tell you my personal experience with Al, my brother and what MSA did to both of our lives.

I was able to handle and I believe Al was too, most of the daily changes that happened along the way, until he became bedridden. The disease had already progressed pretty quick in my eyes but now we were not prepared for the fastest roller coaster in the world effect.

Bedridden was something Al fought. He wanted to get up but we had shown him it was not possible. Hospice had brought him a regular hospital bed and after a few weeks of being in bed all the time Al started getting sores.

He was changed in positions every two hours and sometimes every hour but his skin was breaking down anyways. All caregivers, including myself put lotion on him twice a day. We paid special attention to the elbows and heels of the feet. We used as many pillows as possible because if you use too many on an air mattress, the mattress can’t do its job; but we were fighting a losing battle.

Hospice thought it was time to protect Al’s skin so they suggested an air mattress. It was a little bit of a challenge though. Al could not sit up or help in any way to make the transition of mattresses, so the fire department was called.

We told them when the new mattress would be delivered and they arrived precisely at that time. With the help of four firemen and us caregivers we were able to hoist Al into a Hoyer lift. We sat him in his lift chair and everyone went to work quickly to change mattresses.

Al was so weak his body curled up into a ball in his chair and he began to fall forward. A couple of us hung on to him to save him from injury and in no time Al was transferred to his new mattress. I was so thankful for these guys help I couldn’t say thank-you enough.

Al was not able to eat the foods that he needed to keep the skin healthy. By now he was eating mashed potatoes, puddings and ice-cream. Al craved sherbet. It seemed I couldn’t  keep enough in the freezer. Sometimes volunteers from the community brought some over.

I think the cold foods felt good on Al’s throat. When he swallowed he reminded me of a turtle in the way his head and neck moved. I was concerned because although  he was a mild diabetic, all these sweet treats may cause his sugars to rise sharply causing him more problems.

Hospice assured me this wouldn’t happen since he wasn’t getting that much food at this point. From that moment of relief to the end of his days I gave him anything to eat that he could swallow.

His head had turned on its side and was locked in position. It was so tight in its place that it made it very difficult to shave him.  His ear didn’t get the air it needed so it became infected, with the disease eating a hole in his ear. We had Hospice medicating this daily, but it never left.

Al was not able to communicate any longer by talking. I do remember there were two times in the very last parts of his days that he by the grace of God spoke to me. He could sometimes still blink, although only half-blinks, it was a blink for yes or no answers.

He could no longer move any part of his body. He had a catheter at this point and after having this inserted for a few weeks it started to become infected. I think this is when everything started to go down hill  fast.

The normal process of catheter care is to totally change the tubing and bag one time per month, with bag changes made more often, but I wanted  the tubing changed more. You ask me why? The answer is with the naked eye we can not see what is going on inside the body. We can only guess or assume.

One of the times the catheter was to be changed, the tubing would not come out. Each time it was attempted, Al would moan in pain. I cringed in fear and my heart melted for the brother I loved so much as I wondered how they were going to manage to retrieve it.

With as much patience as possible and gentle nudges the tubing end on the inside of his penis did release, but it tore some tissue and the blood in the catheter bag appeared and never left for good. Hospice did its best but the MSA was boiling inside of Al.

I believe that Hospice felt if they were to change it more often, which is what I wanted, that there was a much higher risk of infection for him. I understood what they were saying but I stressed each day because I didn’t want Al to have to go through any extra pain.

Al was on high doses of pain medications which in turn caused constipation. It just never seemed to end in my eyes. I know it hurt him because when any of us would attempt to roll him to the opposite side, he would moan in pain when we placed our hands to close to the  abdomen area.

Many times after I left his room I wept. I prayed for Al’s release of this terrible disease. When I thought nothing could get any worse, it did. Al could no longer eat the baby bites of sherbet. He could no longer use straws or anything I would try to get liquids inside his mouth.

i began to use syringes to give Al a drink. It had to be done very carefully and ever so slowly. He would choke if I gave it to him at any speed so slow was the way we went with everything for Al from that day forward.

Chapter 29

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.

Chapter 28

This new diagnosis changed everything. Some ways that Al had been acting didn’t seem right for what PD did. In a way it was a relief to know that he now had MSA.

http://www.ninds.nih.gov/disorders/msa/detail_msa.htm

You can type this in your own search bar and get some information on MSA. I won’t try to make you believe that you will find all the answers to your questions. There isn’t a lot of information on this wicked disease.

From the day we got home from Zales, I began to be my own teacher. I studied for hours, days and months. I read everything I could. I talked to people and doctors. It was disappointing to me that barely anyone in my own living area had ever heard of this.

I knew that the kind of person I was, I would dig in and come out knowing as much as anyone would allow me to soak in. I would be my brother’s advocate, sister and guardian. I thought I would always stay on top of this and be mentally and physically prepared for whatever was to come at us.

Of course I was wrong. How can I actually know anymore than some doctors? But, I did learn a lot. I belong to Facebook and there are several member web pages that are full of people who have MSA.

Actually I always felt honored to be included in the web pages. We became like family. I have several friends who are suffering from this disease or have family members who are. I felt and still do that most of those suffering from this terrible illness belong on Facebook. You ask me why I think that? Because MSA, is so rare.

Multiple system atrophy has a prevalence of about 2 to 5 per 100,000 people.

People like Bonnie, and Carole, Janiece and Lise and Connie are among the dear friends I have made through Al’s illness. I believe in the old saying, no matter what storm you are going through, there is a rainbow if you look hard enough to find it.

This is the way I feel about these friends of mine. They are not just friends; they are a part of my life and family. With an illness this rare and this scary, you and I need all the support we can gather up. If you have MSA or know of someone who has it, please open an account on Facebook and type in the words MSA. You will be happy with the information you find.

Want to know more about MSA? I will provide you with some information below.

The Multiple System Atrophy Coalition
8311 Brier Creek Parkway
Suite 105-434
Raleigh, NC   27617
vjames@msacoalition.org
http://www.multiple-system-atrophy.org
Tel: 1-866-737-5999

Who discovered MSA in the beginning?

Click to access 379.full.pdf

Al and I fought through this wicked disease together. He continued to go to his Day Program from July 2013 through Halloween of 2013.

He had a Halloween party to attend to at the Day Program. He didn’t want to wear a mask, which I didn’t blame him or try to talk him into. Instead he picked out his favorite coca-cola clothes, and this is what he wore.

When he was dropped off back here at home. The bus driver helped him down. She then asked me, ” Has anyone called you from his classroom?” I said no, and she suggested I get a hold of them.

There was still time before they closed so I got Al safely inside and placed him in his lift chair. By now, Al didn’t walk anymore. After the strenuous therapy days he just didn’t have strength any longer. He didn’t walk alone anymore. He went from the single cane, to a four-legged walker to now total help from me. He could stand long enough to pivot for me to get him in and out of his chair or in his bed.

I called the Day Program teacher and was fortunate enough to be able to speak to her before she headed home. She told me, ” Al cried throughout much of the day, and if  he wasn’t crying, he was sleeping.”

Oh how my heart broke. Knowing that under any other circumstances, Al would have been the life of that party. To cry because for Al, pain on some level was always present. We were never able to walk away from it.

Stronger medications were used for pain and all of Al’s other medications were removed by the following week of the Halloween party. I knew things were very serious when the doctors decided to take away his heart medications.

I knew enough from my career training that the MSA was so strong within Al, the other medications he had taken to feel better and survive were no longer working. Now Al was only on a few medications. Very strong ones for pain in liquid, patch and tablet forms.

Oh how could I get through this? How could I remain strong and smiling for my brother when I knew his life was in jeopardy? By the strength of God, that’s how I did it and he held on to my hand tight and guided me throughout the rest of Al’s days.

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.

Chapter 24

Life wasn’t getting any easier. I decided Al needed to be home where his familiar doctors were. Al and I were not crazy about this idea. We both didn’t really want to walk back into memories that upset Al and made me sad.

The house listed and before we realized it we were packing up rooms, getting a moving van and were headed back to Indiana, our home town. There was really no excitement between the two of us as we saw the Warsaw sign come into view.

It was late and we were both tired from the travel and all the things that go along with moving. Because of the friction that was heavy in the extended family, Al and I didn’t let anyone know we were coming home except my kids.

My son was waiting on me to let me in to our new home. The movers were tired but went straight to work unloading the truck and setting up our beds. I believe Al and I finally flopped into bed around 4am.

The next day I wanted to pull my hair out as I looked around our home and saw box after box. Al and I  both needed to take morning medications so we dug clothing out of our  over night bags, got dressed and went into town for breakfast.

It didn’t take long while eating that Al and I started talking about the past. Had people’s views changed while we had been gone those few years? Was the talk about who was to get what past now that the estate had been closed long ago?

As we ate, we watched the news on the overhead TV and watched cars go by. Afterwards we went back to our home and Al started putting his room together. He complained of being tired and sore. I told him, ” Just do what you can bud. I will help you with everything else.”

He seemed alright with that. He went for his prize coca-cola and started setting it around. Then he got his clothes out and put what he could in his drawers. He cleared off his bed and laid down to watch TV.

That was fine with me. He didn’t feel well and yet he still helped. I spent most of the day busy putting things away. I started with the bathrooms and then the kitchen. I made sure that things we needed were unpacked first. Dishes, glasses, silverware, toilet paper, bath towels and wash cloths.

By the end of the day I was exhausted but still not finished; but at least I had a path to walk through. Al and I ordered a pizza for supper and had it delivered. For the rest of the evening we watched TV and went to bed early.

The next day was more unpacking. Within three days I had the place pretty presentable. I then started on the projects for Al. I called his former doctors and had records sent here from Florida. I called a company that Al used to work through to see about a Day Program.

By the end of that day we had scheduled appointments set with our new family doctor, Al’s old  heart doctor and Cardinal Center, the company Al had been associated with for years.

We went to supper at Golden Coral. Al loved eating there because it was buffet and he could make all his own choices. Al did pretty good walking. His top half of his body leaned to the side and his total side definitely was weaker, but he got what he wanted to eat all by himself.

As the days moved forward we discovered through the heart doctor that Al had suffered what is called a TIA, a silent stroke. This is what caused his upper half to lean to one side.

http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/TIA/TIA-Transient-Ischemic-Attack_UCM_310942_Article.jsp

The heart doctor said for the damages that Al had suffered in his heart attack and the Angina he had now, he was in pretty good shape. She said he would not be able to keep us with most people and he would tire more easy than others. I was happy with this news.

The family doctor took Al’s vitals and had his records from where we had lived here before and his records from Florida. He asked many questions such as how was Al feeling on a daily basis, how was his appetite, did he suffer constipation, did he take vitamins.

After having an hour meeting the doctor ordered a CBC,(complete blood count) for Al and said to come back the following week.

We had only seen one neurologist when we had lived here prior but I had actually forgotten that so a new doctor was ordered. We went to see him a couple of weeks later.

We spent the in between hours enjoying the fall weather and looking at pumpkin decorations and houses that were fixed up for Halloween. We decorated our own home for the holidays and soon drifted between doctor visits and the thoughts of Christmas and snow. Neither of us were looking forward to that at all. I think this is what we missed the most about Florida, no snow.

We ate out a few times a week. My son told Al and me of car shows that were coming up. I decided to take Al to see them and before long Al had decided to add a new interest to his hobby; car collecting.

My son loved Chevy Bel Airs. He had one that was aqua blue and Al fell in love with it. Al started collecting these same type of cars. If he could not find one he would purchase an old car of another model. He loved the police cars from the era of Andy Griffith. By the end of Al’s life his room was filled up with these two special cars and many others along with his coca cola that he found.

Chapter 22

The test was scheduled for the next day. Al asked a lot of questions but I assured him it was not going to hurt. I explained how they were just going to take a fancy picture of him. He seemed content with that.

I was there when the specialist arrived. He set everything up and explained the procedure to  Al and me. After the wires were attached he begin doing his magic. When it was all done, the doctor showed me what he had suspected.

Al had some brain damage happen from the seizure he had. He said that I should not be surprised if in the near future Al would begin to show Parkinson’s Disease as it was so strong in the family.

Al didn’t seem to really understand and I explained as briefly as I could. I didn’t want him to get this disease. I had seen the effects of it with three different family members. The specialist unhooked everything and left.

The next day Al was released and we went back to our normal routine of living. I tried to brush the doctor’s words to the back of my mind. Why worry when he showed no signs of it.

About three months went by from that day at the hospital. I started noticing Al was tripping over himself. He fell a few times getting in and out of the truck. I tried telling him to be more careful, to walk slower and not to be in such a hurry, but in the back of my mind, those stored words were starting to surface.

The next time he fell out of the truck was the last time. He not only cut his legs but he was limping. I called the family doctor and made an appointment to take him in. After seeing Al, he sent him to a sports doctor.

The new doctor did x-rays on Al’s legs and he had torn ligaments in both knees. That was the last time Al rode in that truck. We went car shopping and got something that Al could get in and out of with ease.

Nothing stopped for him. The car made it easier but then a slight tremor started being seen in Al’s one hand. It went from there to the upper arm and then on the same side the leg started to twitch.

Once again I called the doctor. After checking him he thought it best to send Al to a neurologist. He told me he was pretty sure Al had Parkinson’s Disease. I smiled at Al as the doctor spoke but inside I was screaming, no, no, no.

The appointment took a couple of weeks. In the mean time Al didn’t have the tremors too often. When he did have them I could see they bothered Al. He always told me he was trying to get them to stop but he couldn’t.

I started researching this nasty disease. Although I had been familiar with the word and had seen some of what it can do, I needed to know more. I didn’t like what I read. I kept reading the same thing over and over, no cure and gets gradually worse. The worst I read was there was no cure and Al could suffer for years with this.

Upon arriving to the appointment he had Al do different tests. Strength and walking, squeezing fingers, and gait. The doctor diagnosed the final words Parkinson’s Disease. He explained about exercise and how Al could benefit greatly from it. He explained how the tremors may spread from the one side to both sides. He said the head could shake or the lips tremor.

I shook his hand and thanked him for the insightful information. Everything was going to be different from now on. My family members had terrible tremors and one of them ended up in a wheel chair. I was going to make sure Al lived life and had as much fun as he could possibly have while he could.

There was nothing really prescribed for Al at that time. There were no special changes that we made. We just waited and dealt with what he was given each day. The tremors did continue. They moved from the one side to both sides.

He didn’t have the lip tremor and he didn’t drool. Other than the shaking of the hands and legs he led a pretty active life. I continued to allow him to go to his adult day care. I wanted him to not have to think too much about the doctor’s visits.

He was scheduled appointments every six months to see if the disease was progressing. Only then did we actually voice the word Parkinson. Al still went on the outings and seemed to be having a good time.

I then started hearing him complain about his hands. I had noticed they were shaking a little stronger than in the past. He was mad because he was beginning to lose control over them. He was beginning to spill things he was trying to hold.

I noticed that he would sit on his hands to get them to stop shaking. For some time that did seem to help. The more he seemed to struggle the more I began to spoil him. I took him  out to eat all the time.

We went to the flea markets and shopping. What ever clothes he wanted I tried to buy. We looked for coca cola items even harder. Life was still pretty good when I look back at it now.

He then began to complain of chest pains again. I took him back to the heart doctor and his exam showed him that Al was just stressed out from the shaking. He started prescribing calming medications. Before too long had passed, Al was on Parkinson’s medications along with antidepressants and also  the calming medications.

Chapter 21

Al and I spent a night in a local hotel on our last night in Indiana. The next morning Al was very talkative and ready to get out-of-town. My daughter was here and she was driving us down. We ate breakfast and took one last look at the home property and headed out on the highways.

Al was amazing. He did well on the trip. It was a 24 hour drive. He made me smile many times as I discovered he knew each license plate and what state they were from. There were times when he also knew the county the plate belonged to. This occupied him for the better part of the trip.

Al enjoyed stopping at restaurants and gas stations. Something new to look at and discover. We went past the huge Coca Cola plant in Georgia. Al was so excited to see that. I will always remember the Coca Cola plant.

I had contacted them one time and explained how Al was a big fan. The company sent him several souvenirs and invited him to take a tour. Although we never got to do that Al always treasured that package that came for him in the mail.

We arrived in Florida. It sure was hot. The truck arrived and they started unloading while we started trying to empty boxes. My daughter stayed for a few days but then went back to Indiana. I sure did miss her and after she left I cried like a big old baby.

It took quite a while to find our way around. The city we lived in was Sarasota and it was much bigger than our home town. One good thing that came out of our scoping areas was I found a place Al could go to through the week days.

It was a place where disabled adults could hang out. They ate lunch there. They socialized and played pool. There were counselors that came in and spoke to each client.

The best thing that Al liked was getting to go on outings. Since the city was so big many businesses donated tickets to different events. Al was fortunate to be able to go to several movies, plays and  he ate out once a week and sometimes twice.

He got to go to Tampa to baseball games. He went to outlet malls in different towns and got to go shopping. He searched for Coca Cola in every flea market they visited. He sometimes went to Siesta Key beach and the group of them cleaned the beach of trash.

He was never crazy about doing that job but he went because he knew he would be with his friends. Al loved to talk. I always called him the social butterfly. Everyone knew Al and he seemed to never know a stranger.

The weeks turned into months and the sun seemed to be a big help to Al, but things never stay the same and one day he started having chest pains. I thought he was having another heart attack and so the EMS was called.

He wasn’t having a heart attack but the doctors knew he was experiencing something real. They admitted him into the heart hospital. The doctors discovered he had new blockages but they were not bad enough for repair. They also learned he was experiencing heart angina.

He was dismissed the next day and we just took it easy at home for a couple of days. There was nothing really to do for him, but I started keeping better mental notes of what was happening and how he acted.

More time went by. Al and I enjoyed some dinners with family and we learned of a great Amish restaurant. It was a buffet type and all the food was made from scratch. This place became Al and my favorite place to go.

Inside Dutch Heritage they also had a section of reproduction and genuine antiques. Another part of the restaurant was a bakery. Al always made a stop in front of the glass and admired the sweet treats. After a couple of visits we found a little section that had day-old goodies and in no time Al was picking out one thing to take home on every visit.

Oh these memories make me smile. I had seen Al so sad and angry for so many years. It was a pure joy to my heart and soul to see him smile and talk and laugh. He had a full life. A life full of friendships, exciting places to go and awesome places to eat.

One day Al had been to an evening outing. The bus brought him home and when he came in the door he seemed fine but in a blink of an eye everything changed. He looked at me as if he was seeing a ghost. He started to cry. He asked, ” Who are you? I don’t know you and where am I”?

It scared the crap out of me. I had never seen him like this and I knew without a doubt he was playing no  joke. I tried to tell him who I was and where we were but he was scared. I called the EMS and they came.

After numerous questions they suspected Al had a seizure. They took him to the hospital and he was admitted once again. Several tests were done on him but each one came back negative.

A specialist for brain issues came to see Al. He wanted permission to do a special test. I was all for it as long as I knew Al was not going to suffer in the process. The doctor explained the procedure. Wires would be attached to Al’s head and they would take a different type of picture that would go deeper inside the brain to see if they could find anything.