Not much going on Joe

It has been a rather slow start to summer. Since Dad is past the stage in his disease where he is impossible to get along with, his life is pretty much an uneventful routine. We take him here or there to add some spice, but he doesn't comment on it or talk about it later. He asked me to call someone for him the other day and I said that I would do it right then. I told him I would get the phone and call right away. As I was dialing I noticed that he had wandered off. He had forgotten about it already. The highlight of his life is now what happens each day at adult day care. The piano is fixed and he can play again on Tuesday. He is happy.

The most notable part of his decline is loss of speech. He has, of course, had problems finding words for some time. The rate of loss has accelerated. Simple words come with difficulty and conversations are hard. That brings a sad point. We had guests the other day and mostly they just talked around him. He sat at the table with them, but he couldn't follow their conversation. When he interjected a thought they would politely listen, but then ignore further attempts to engage him in conversation and would go back to their own. These types of events are very hurtful to the Alzheimer's patient. They know they are being snubbed, but can't articulate the hurt. A monthly newspaper column, "Time in a Bottle" had just addressed this issue the week before company did the same thing to Dad. Seeing it happen in real time brought alive the truth about the disease discussed in the monthly column.

One of our nightly attempts at supper is to start a short conversation with Dad about his day. The conversations never last long, but we try to engage him. Ten minutes later in the middle of another conversation, he will suddenly interject an idea from what we had been talking to him about before. Ideas process slowly in his mind and when it gets focused on something it may last a long time before anything comes out. At that point it often makes no sense unless you think backwards and try to think as he thinks. It isn't always easy.

The good news is that in most ways life for him is now better. He has no great rages anymore. He seems to look forward to adult care and talks more about it when he gets home. Life is stable and secure. We are less stressed. That is our current sunshine in his descent.

Looking Good Joe

There was a wonderful thing that happened last week. Dad wanted to go to the barber. His barber was closed. His barber has been trying to get Dad to spruce up a little, but Dad just wants a haircut. Well, the new barber didn't ask any questions like "what do you want?" he just started in. The first thing he said was, "you need a trim". Not on top of his head, but on his chin. Dad has been wearing this truly atrocious beard since he moved in here. It is like a protest statement or something. Anyway, it is awful to say the least. Some people even took a poll and decided that he was the spitting image of Fidel Castro. Dad could go to Cuba and be widely accepted. The barber said, "you need a trim" and started trimming. Dad processes words quite slowly. By the time he processed what the barber said, half of his beard was gone. You can't run around with half a beard, so now it is all gone. Down side, he is growing it back. Upside, we know where to take Dad for his next haircut. By the way, everyone has complemented him on his new look.

Do you know the old song, "If it weren't for bad luck, I'd have no luck at all"? That sounds like Dad this week when he came home from day care. Someone had stopped him from doing something he felt he should be able to do. It seemed a little silly to me too, but rules are rules. It was all he wanted to talk about. He couldn't remember anything else that happened that day but that one thing. If it weren't for a negative story, there would be no stories at all. The next day he did have a better story. They have fixed the piano at the center. Bad news follows good like night follows day. They wouldn't let him play it because he wasn't on the schedule that day to do so. Alas.

Keeping on Joe

It has been a while since we last were here. My bride and I finally got a week of well deserved vacation. The week before that was too hectic to stop and write anything. How has Dad been doing in this time? Well, I came almost to my limit with him two weeks ago. He had become so uncooperative that I felt I had to put him in a home to salvage my own sanity. Too many people see the Alzheimer's patient as the person in need. In reality, the caregiver is the one with the weight of responsibility and care. The patient is really most of the time in their own little world. As one very insensitive person said to me when I said that I might have to put him into a home, "So, you have finally gotten tired of him, huh?" That is how people that need a brain transplant hinder the caregiver's survival.

Our daughter and her husband along with our grandson came to stay with Dad while we were gone for a week. All survived well. Dad had no episodes of disagreeableness that led to problems. He hasn't any since we returned home either. Progress. Unfortunately, it is progress that is measured in terms of his decline, not progress like, "yeah, he has finally learned not to be so difficult." It means that he has mellowed with the disease. Today he came home from the day care center and asked my bride for his money. She looked at him and asked told him kindly that she didn't have any. He said that he wanted $100. She told him again kindly that she didn't have any money. What did he do? Two months ago he would have gone into a rage and swore and ranted and threatened great bodily harm to whoever was stealing his money. He has done that for the 20 months he has lived here. Now, he said, "Oh, but I want some money." To which my bride once again answered that she didn't have any. He shrugged and went to his room. No tantrum. No hours long argument that always repeated the same things. No swearing or threatening great bodily harm. No bringing it up again at supper as a lead in to another endless argument. NO!!! Just a shrug.

He has been that way now for a month on the issue of money. He has completely dropped all the other major issues that use to result in the same horror filled explosion. Now he has just one remaining issue. He still doesn't want to go to day care. That is not an option. It is not an option with us. It is not an option with the Area Agency on Aging which provides medical insurance for him based on his Alzheimer's. No day care, no insurance. When he positively refuses to go to daycare, he will have to go to a nursing home. Why? He needs the insurance coverage for one thing. For the other thing, I can't describe how it was to go on vacation and not have him as my key responsibility each day. I am a lifeguard. It was like coming up from the bottom of the pool with a heavy weight. Your breath is almost all gone and you break the surface of the water and take a gulp of refreshing air. The weight is still there, but you can breathe again and start to resolve the problem again. The first need was air. I got air!!! With air I can work on continuing the care that he needs. I had some sunshine in his descent.