There is a prelude to this fish story that really has nothing to do with fish or fishing. It has to do with becoming the parent of the Alzheimer's patient. Many people can't or won't become primary caregivers because of the role transition involved. The person with Alzheimer's becomes progressively more incompetent to care for themselves or make certain decisions. The child of that person either has to agree to become the 24 hour parent and make a complete role reversal or commit the parent to the care of someone else who will. Parenting of a child can be wearing, but it is a piece of cake to parenting an Alzheimer's patient. At a conference last week the speaker was using the comparison of a child to an Alzheimer's patient. The key distinction is that the child will grow and learn, but the Alzheimer's patient will only decline. There will be no new learning, no new mastered skills, no reasoned discussions or explanations. Indeed the skills that had been mastered will fade away. In many ways every day is new, what was told to them yesterday is gone for good. Reasoning is a two step process and they will often have difficulty with one step processes. As parents we used to say that it went in one ear and out the other. With Alzheimer's patients it goes in one ear and dissolves.
So, I took Dad fishing today. It was a long process to get going. The reels from last year were needing a little attention. My sons and I needed to get fishing licenses. A few other chores had to be attended to first, but finally we were off. We met my other son and his father in law and started drowning a few worms. The fish were biting, if you call 4 inch catfish fish. Then grandpa caught one. Well, if you call a 12 inch carp a fish, he caught one. Now, in his mind which is a child like mind, that was supper for 5000 people if we just had 5 loaves to go with it. I am not so old that I can't remember such high hopes. But, it was a carp, and only a little one at that. Now, the adult thinks ahead. If we take that home he will want to clean it, but he can't clean it by himself. Then he will want to eat it or nag my wife to cook it for him until she goes crazy. Of course, he would choke to death on the bones, or worse, insult her cooking of the fish. The humane thing to do was done. The carp went back into the river.
Now, I remember what my dad said about carp when we were children. "I don't want any of that *%#@)* fish in my house." But, now he is the kid, and he wanted it. He got mad and not a little mad. He compared my action to the recrucifixion of Christ (really) among other things. He put his pole away and wouldn't fish anymore. All day my boys had waited to go fishing, and now it was over. Fortuneately the boys are old enough to accept things like this, but it made them really not want to ever go fishing with grandpa again. Why, you ask, didn't I just throw the fish into the garden when I got home. 2 reasons jump immediately to mind. First, I had no idea he would react quite the way he did, upset, yes, crazy angry and pouting, no. Second, the anger would have been just as acute at home as at the river. Since I wasn't expecting quite the outburst that ocurred, taking care of the anger now rather than later saved postponing the inevitable and seemed quite logical at the time.
There is a final postscript to this fish story. Now Dad smells like fish. Only he can't smell it and won't believe that we or anyone else can either. He loathes taking showers or getting fully clean. Too bad for the people tomorrow when he goes and plays the piano for them. The flip side of being the parent to the Alzheimer's patient is that I can't physically drag him into the shower like I could a child. One, it is against the law and, two, he's too big. That is just part of the problem of parenting an adult, it ain't as easy as parenting a child. Compulsion is not in the vocabulary of the full time caregiver. They may be the child, but there is none of the natural acceptance of roles and what they mean. Now, excuse me, I must go see how I can detoxify him without creating a national calamity.
Monday, May 29, 2006
Sunday, May 14, 2006
Miscellaneous
"I am just an it" is a common comment from Dad. If he isn't telling it to me, he is complaining about it to someone else. It really rankles him to be an "it" and not a person. "Its" can't drive or have their own checkbook or mow the grass or whatever he wants to do today that he can no longer do safely. It doesn't matter to him that he can do things, because those don't limit him and he doesn't give them a thought. He only dwells on the negative, a fact that I listed in a blog some time ago.
Last week I went to a conference for ministers dealing with congregational members with Alzheimer's. It was good. One of the speakers pointed out that one great frustration with Alzheimer's patients is that there is absolutely no reasoning with them. You can try to reason with a child, can reason often with an adult, but although they are an adult and act childlike, we can't reason with them. Therefore there is no out in the issue of being an "It". I have tried, but it doesn't work. He can't follow a logical argument to its conclusion, only to its beginning.
Does he really do things of value? Yes, he plays the piano three times a week at the adult care center where they really love and value him. He often helps dry the dishes after meals. Not everyone else is jumping to do that job. Honestly I haven't found much more for him to do. He doesn't have good balance, he doesn't make wise choice in using tools and doesn't use them safely, he argues about the process of any job being done and the list goes on. My brother was aksing me if I had any suggestions about what more Dad can do, and I really don't. He does like to pick up sticks and paper that come into our yard. The downside is that our city has a strict garbage code. No yard waste in the garbage can and no garbage in the recyclable or yard waste bin. He can't remember those things and so when he works outside I have more work to do sorting things out. Basically any task he does beyond the two I mentioned only create more work for me, and I don't need more work.
My wife and I went to a nursing home the other day to check it out. Maybe it's time to do so, we thought. Well, the thought was largely precipitated by everyone else telling us we are burning out taking care of him and now would be a good time. Well, we went and came home again and he is still here. We can hang on a while. He certainly would not have fit into the Alzheimer's unit at the home here in town. The people there had little or no cognitive skills and he still communicates fairly well in one on one conversations. He does have hard time finding the right word and using it, but we can work around that. He still plans his music program for the adult care center which demonstrates a lot of cognition for a single task. No, he wouldn't have been even a little happy in the unit.
At the conference the other day I asked others about his particular symptoms. He is unique. The professionals there had never met anyone who is in his late a stage of the disease who was still in complete denial of having a problem. That creates more headaches for us. It was nice to hear from them that it would create more headaches for us because of his attitude. That was bad news that was almost comforting, because it at least supported the burnout we are feeling with him. Also no one else had ever had a patient who prays for himself to be healed and then thinks they are. None of the professionals had ever encountered anyone who even had asked to be prayed for for healing, let alone hold their hand on their head, as he will do, and pray for themselves. They said that that would add to the difficulty of our caregiving and wear us out. It does.
Their solution? Put him in a home. What kind of home is unclear because they also acknowledge that he doesn't fit the profile of the Alzheimer's unit. He needs intermediate care, but that costs a lot of money, the kind derived from the sale of a home or a large retirement fund portfolio. Intermediate care can cost $150 to $200 per day and has multiple caregivers. He has no money, so it is either a home where he won't fit, or our home where there are just two caregivers. Sometimes I begin to wonder who has more sunshine and who has more descent, him or us.
Last week I went to a conference for ministers dealing with congregational members with Alzheimer's. It was good. One of the speakers pointed out that one great frustration with Alzheimer's patients is that there is absolutely no reasoning with them. You can try to reason with a child, can reason often with an adult, but although they are an adult and act childlike, we can't reason with them. Therefore there is no out in the issue of being an "It". I have tried, but it doesn't work. He can't follow a logical argument to its conclusion, only to its beginning.
Does he really do things of value? Yes, he plays the piano three times a week at the adult care center where they really love and value him. He often helps dry the dishes after meals. Not everyone else is jumping to do that job. Honestly I haven't found much more for him to do. He doesn't have good balance, he doesn't make wise choice in using tools and doesn't use them safely, he argues about the process of any job being done and the list goes on. My brother was aksing me if I had any suggestions about what more Dad can do, and I really don't. He does like to pick up sticks and paper that come into our yard. The downside is that our city has a strict garbage code. No yard waste in the garbage can and no garbage in the recyclable or yard waste bin. He can't remember those things and so when he works outside I have more work to do sorting things out. Basically any task he does beyond the two I mentioned only create more work for me, and I don't need more work.
My wife and I went to a nursing home the other day to check it out. Maybe it's time to do so, we thought. Well, the thought was largely precipitated by everyone else telling us we are burning out taking care of him and now would be a good time. Well, we went and came home again and he is still here. We can hang on a while. He certainly would not have fit into the Alzheimer's unit at the home here in town. The people there had little or no cognitive skills and he still communicates fairly well in one on one conversations. He does have hard time finding the right word and using it, but we can work around that. He still plans his music program for the adult care center which demonstrates a lot of cognition for a single task. No, he wouldn't have been even a little happy in the unit.
At the conference the other day I asked others about his particular symptoms. He is unique. The professionals there had never met anyone who is in his late a stage of the disease who was still in complete denial of having a problem. That creates more headaches for us. It was nice to hear from them that it would create more headaches for us because of his attitude. That was bad news that was almost comforting, because it at least supported the burnout we are feeling with him. Also no one else had ever had a patient who prays for himself to be healed and then thinks they are. None of the professionals had ever encountered anyone who even had asked to be prayed for for healing, let alone hold their hand on their head, as he will do, and pray for themselves. They said that that would add to the difficulty of our caregiving and wear us out. It does.
Their solution? Put him in a home. What kind of home is unclear because they also acknowledge that he doesn't fit the profile of the Alzheimer's unit. He needs intermediate care, but that costs a lot of money, the kind derived from the sale of a home or a large retirement fund portfolio. Intermediate care can cost $150 to $200 per day and has multiple caregivers. He has no money, so it is either a home where he won't fit, or our home where there are just two caregivers. Sometimes I begin to wonder who has more sunshine and who has more descent, him or us.
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