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.