Friday night when Al came home from his Day Program I knew almost instantly it was not going to be a good night for him. I fixed him supper but he didn’t eat very well. After supper I did the usual partial bath for him. He couldn’t brush his own teeth, so I did it for him.
He did not want to sit in his chair and watch TV. He wanted to lay down. I put him to bed, and turned the over head fan on and the box fan. I left him alone for a while. I didn’t worry because I knew that he would be up at 8 to start watching his favorite TV programs.
Well 8 came and I didn’t hear any horn sounding so I went in and he refused to get up. He said he was just so tired. I hated letting him sleep, but that is my old-set mind speaking. My new mind is thinking, let him sleep, he is tired and sick.
So he went back to sleep. At 9:30 I had to wake him up so he could take his bedtime medications and eat his snack. I just knew he would want to get up for this part. He loves his bedtime snack. Last night it was the new Hostess snack.
But no, he didn’t want to get up. He insisted on staying in bed. So like a good sister I kept my mouth and mind thoughts shut. I went and got his medications, snack and diet coke ready and brought it to him on a tray like a king would deserve.
He did eat and I changed his brief and he went back to sleep until this morning when I had to wake him up.
This morning was no better except for the fact I did get him up. His entire bed was wet, and he needed to be washed up good. I fixed him pancakes and two sausages for breakfast. Along with this he had a glass of prune juice and milk.
He ate half of his meal and then he began sweating. He sweat so bad he looked like he had just climbed out of the shower and hadn’t dried off yet. His breathing became louder and he sounded like he was gasping.
I always think this is due from his head laying on his chest while he is eating. I talked to the doctor and nurse and they said at this point if they put a brace on his neck to hold his head up the food would go ahead and slide down his lungs, making him aspirate. They said right now the bent head is saving his life.
He has done this gasping two more times this week but then it stopped. Today it hasn’t stopped. I took him in the bathroom after he said he couldn’t eat all his breakfast and washed him up good.
He had goosebumps all over him. His skin was so cold. As soon as I dried him off the sweat returned. His breathing got worse as he stood so I could change his brief again. After breakfast I asked him if he wanted to sit out here with me for a while or sit in his lift-chair.
He said he wanted to go back to bed. Sadly I put him back to bed. I turned on both of his fans from his sweating but he said I was freezing him, so I turned them off and covered him up.
His tremors became so acute, and his sweating and breathing had been doing their thing for an hour now. After placing him in bed I called Hospice.
She said, “unfortunately this is part of his illness. He is just declining. You know the emergency medication you have there for him? Please use it now. We will call back later to see how he is. There is really nothing more we can do at this point but keep him comfortable.”
I hung up desperately wanting a fix through her answer but got nothing but the emergency medication to slow down his body inside. I gave him a dose and within ten minutes he was asleep and breathing normal once again.
I still deal with giving him these big time medications but I have to get over it and past it. They help him, I can see this. We were supposed to go to a little consignment shop today but he told me he didn’t want to go. He started to cry and I asked him, “Why are you crying?”
“Because I messed up our plans. This disease just ruins everything.”
“No bud, it is alright. You didn’t ruin anything. What is important is that you and I are together today. We will get through this together. Don’t you worry.”
His crying stopped. I have taken the time to stop and write this but now I must mop the floor in the kitchen where he had an accident and take a quick shower. Talk to you later.