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.