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.