Even though I missed Al so much while he was at the Hospice house, it was truly a good thing. Ever since he has been home his tremors are very slow.
This has enabled him to eat and drink by himself. His chatter is constant and he smiles more. I think he has more pride in the fact he can do a few things for himself again.
Not being able to feed himself I notice this is most humiliating to him. He can cry easier at meals than any other time.
I wish, let’s say I am always wanting more. I wish that he could stand longer. He can not. In fact, I think he can stand less. The new medication has helped in the area of tremors and also in less sweating.
He sweats when he has to stand to be changed or transferred. His labored breathing is still heard when he has body activity. The side effects that I think are from the medication are more confusion. He is sleepy more often than not. He stutters quite a bit now, but at least, thank God his tremors have lessened.
All of you that have prayed over Al for so many months, God has been listening and has answered. I will not get my hopes super high. I realize that medications only last so long before the body gets immune to them. I will keep my hope at bay and within reason. Sort of like that game at the fair where you ring the bell with the big pallet. Oh, it is called test your strength. I have never played it. I don’t want to have some gadget tell me I am weaker than I think. Here is a video of the game being played I am talking about.
Have you ever seen hands tremoring so bad they can’t be used? Here is a tiny video of this happening. This is what Al’s hands were doing until this week.
So all I wish for now is the medication to last for a while before we have to start increases. I am afraid if there is an increase Al will end up being bed bound.
I trained someone this morning for the coming Wednesday. I want to attend a very important auction and I could not take him. I felt like a real teacher. This will be Al’s first time staying with a caregiver in his position he is in now. She is very nice. Al asked all sorts of questions. I could tell he was not as much interested in who she was about but if I was coming back.
So thank-you everyone for the constant prayers. I really appreciate them.
He Is Home
He just went down for a nap. I can tell Al is definitely slower in movement but less tremors and…
He just went down for a nap. I can tell Al is definitely slower in movement but less tremors and sweating. I think he did alright on the way home in the ambulance. He even did alright when he was being taken out of it and I heard him talking to the drivers.
Once everything and him were inside and they took off, Al let loose. I thought what in the world? He really didn’t want to come home. But that wasn’t the case at all. He evidently had been holding this in until he got home. His fear and his dismay.
Through sobbing I made it out that the doctor had told him his real diagnosis. I had never told Al because I was afraid he may not comprehend it. The doctor also told Al that he had less than a year to live.
Al and I had talked many times about his life being shortened and seeing Mom, but for some reason hearing it from a doctor was cemented more in his brain. He got it and he was letting me know how it made him feel.
He said that while he was at the Hospice House he spoke to mom and God. He said the two said the same thing, that they are waiting for him. He said once again that God said he can go now if he is ready.
We talked about how his body lets him know when it has had enough by tremoring worse and sweating. I heard him have labored breathing when he had to stand to be changed. He ate all of his supper with very little tremors.
He even drank his milk by himself. But everything is like watching in a slow motion movie. He slumps more and you can tell the body is not matching with his thoughts. He wants to go to Day Program tomorrow even though I explained what could happen to him. He said he wants to try.
He cried again as he said he was ruining my weekends. He understood pretty well that he may not be able to go out on the weekends if he chose to continue Day Program full-time. I think in the end we are playing it by ear and seeing how he feels. I told him it didn’t bother me not going out on the weekends. I explained that if he gave up one day at the Day Program we had a better chance of going out to eat. I also explained that if I wanted to go out bad enough I could go while he was at Day Program.
As soon as supper was over he wanted to nap. I can tell by his eyes that he is drugged. I guess this is the kicker to having less tremors. We are truly talking about the comfort stage now here at home.
What Would You Do?
What would you do? I have had plenty of sleep and therefore I have plenty of open space to think.…
What would you do? I have had plenty of sleep and therefore I have plenty of open space to think. If you knew that you were going to cause physical pain by allowing Al to continue to go to Day Program would you let him go? Would you take him out to eat on his good days?
Would you keep him home and bed bound pretty much? Would you consider as I have what that will do to his emotional state of mind?
While he has been at the Hospice House he had been bedridden. His tremors have slowed down with a new medication. He continues to sweat but not as bad. The doctor says he can’t get the sweating or tremors to stop permanently.
He is considering when sending Al home with some sort of pump for medication. He states that when Al is active he is going to go back to the way he was this past weekend.
I am not able to make a decision because I can see how I would be if I was pretty much stuck to a bed.
To me there is more involved here than his physical state. I can not ignore the fact that he is slipping a way. So what do I do with the time he has remaining. Let him live? Consider his mental capacity that he may not quite understand that he will suffer?
I am rambling on and saying the same thing over, so now I want to read your thoughts please.
Poor Al
I am only writing because the day has not been good so far. I have kept in touch with Hospice so…
I am only writing because the day has not been good so far. I have kept in touch with Hospice so much today.
Al has had terrible sweats, so bad I have had to do complete bed changes three times already. Hospice also upped his increase of water pills because his swelling has gone from the ankles to leaving pit marks half-way up to his knee. He wets so heavily now that I am keeping him only in his brief for today.
He didn’t want to get up for lunch but I encouraged him anyways. He refused lunch so I offered him an Ensure with ice-cream in it. He couldn’t drink it so I helped him so he could get it down.
He wanted to go back to bed. With all of the pain medications today he is finally sleeping. I hope when he wakes up he is feeling a bit better.
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.
Who I am 