What should have been a 5 hour drive took more than 7 between rain and Thanksgiving weekend traffic. I miss sharing the driving. But the kids focused well on helping me load the car, and we are pretty efficient. Both kids go back to boarding school tomorrow so I will focus on them tonight.
We are at a retreat center on the water south of Charleston--John and I and both our kids and our daughter's boyfriend. This is a tradition of 4 or 5 years standing, though we didn't go last year because our daughter had to have her wisdom teeth out. I asked for a cabin nearer the dining hall because John has Parkinson's, but I said it wasn't important. we could manage any of the cabins. To my surprise we got the closest cabin, which is set up to be handicapped accessible. It is nice to have the bigger bathroom and no steps. John seems to be enjoying the time here--it is good restful time.
I realize this blog may be confusing for many readers because John was diagnosed with Lewy Body Dementia much earlier than usual. He doesn't have hallucinations yet. His neuropsych testing in June showed impairment in only a few areas. He has definite Parkinson's symptoms, most notably slowness (only a little tremor) but his Lewy Body symptoms are subtle. His executive function (which was never his strong point) has gotten worse. He gets confused sometimes. Remember that he was a community college professor--even if his verbal abilities have started to decline, they started from a high level so are still fairly high. His driving was tested by an occupational therapist in August and he passed without reservations.
If anything, I would say that John is somewhat improved from June, due to Aricept (and more recently he is also taking coconut oil). For a while he was losing insight into his condition, but he has gotten it back. He doesn't want to just be taken care of, he wants to still have a partnership relationship with me.
For a while I resented so much having to do tasks we had formerly shared, such as financial and travel planning and home repairs, that I felt it wasn't a partnership any more. I also resented that he wasn't trying harder to do what he could to improve his quality of life, such as more exercise. I'm working my way through to a better place on that, where I can accept a rebalancing of the relationship. He's volunteering to do some things that are hard for me to get done because I am still working, such as picking up our son at school (though this vacation he said he would do it but then was behind in clearing up his stuff to make room for company coming for dinner and so I had to go pick up P).
John complains that I don't treat him as a partner any more. How can we see ourselves still in a partnership? He has started to do more of some things he can still do, but as soon as it gets beyond his routine he does have trouble getting things done. Can he still give me emotional support? I'm not sure, but he wants to try. It gets tricky when what I am upset about is our future together. But he has always tended to leave me to do the emotional work of the relationship so I do feel he would like me to work out things emotionally for both of us. Sometimes I resent that, but it does mean that he respects my emotional struggles (and he is used to my not accepting things without a struggle).
We are off today to the coast south of Charleston to a retreat center for the Thanksgiving long weekend--John and I, our two kids, and our daughter's boyfriend. This retreat center has lodge rooms, but they also have very low cost accomodations for their Thanksgiving retreat in the cabins used for their summer camp and nature education program for kids. So we will have our own cabin--one big room with five bunk beds and two bathrooms. We will walk on the beach and eat in a communal dining room and I hope to get in some long bike rides. I'm going to take my laptop and I think there is internet access somewhere but I may not post.
What I've been gradually working through the last few weeks is that I need to learn a new way of validating myself. I am someone who has been able to validate myself by achievement, by what I can contribute to the public world (on a small scale). But caregiving is like housework--you wash the dishes and they just need washing again the next day, it doesn't accomplish something in the same way as writing a book. I'm sure there will be parts of my life in which I will still accomplish things, but to grow into the caregiving role that I am beginning to play, I need to give up depending on validating myself by achievement.
Some caregivers validate themselves by feeling that self-sacrifice is an honorable path, but I am too much of a feminist to want to go there. Instead, I'm wondering if I can learn to validate myself not by accomplishing something predictable and concrete, but by the fruits of my actions. In the religious circles I run in, people talk about how we can only know if we are doing God's will by the fruits of our actions. If unexpected good things grow out of what we do, then we are following God's path. It involves giving up trying to be in control, but looking for the good that can come out of difficult situations.
Meeting together with the therapist today, John complained that I don't tell him things. I talked about wanting him to show more empathy. When I do tell him something he asks questions and I feel pressured to have answers to his questions. I don't feel he is trying at all to imagine what it feels like, to put himself in my shoes. Ten years ago he was better at that, though it was an easier situation for him--I was dealing with issues from my childhood that didn't bring up any particular pain in him.
I talked about how painful it is to have the program I built at work at risk at the same time that I'm increasingly focused on caregiving, which doesn't involve achieving anything lasting. I said the only accomplishments that come out of caregiving are spiritual ones and there I feel so alone because he isn't interested in finding meaning in the journey we are on. I mentioned a book and he said he wanted to read it, but I'm not optimistic because he has read nothing I have given him except Grayboy's book.
I don't know if any of this is actually still possible for him or if I am doing nothing but setting myself up for disappointment.
Our son P. and I talked about many things driving home from his school--his Thanksgiving vacation started yesterday. At one point he asked the name of John's illness. He did have the idea it was like Parkinson's with Alzheimer's. I said that is a good first approximation, but having trouble thinking can take different forms. Alzheimers is most of all memory loss, so the person asks you the same question over and over again. Then there is one called Fronto-Temporal Dementia where the person acts inappropriately. Lewy Body Dementia starts with problems with excecutive function, difficulty with planning and organizing and managing anything complicated.
P. said while it is hard for me to try to do everything, that seemed better than having to answer the same question over and over again or deal with inappropriate behavior. And I said yes. I hadn't thought about it that way.
Nothing big, just tired. Things are still up in the air for the program I run. Dealt with a plagiarism case. Realized I haven't bought my daughter's air ticket for the end of Christmas vacation. Called yesterday to make her a dentist appointment over Christmas and it was already too late.
We have people coming over for dinner tomorrow and John isn't cleaning up his stuff until I tell him to work on each particular thing. He did say to me he thought he had cleared his stuff out of the guest room, could I check. That was a helpful way of handling it--there were several bags and boxes of stuff he had missed. He laughed rather than getting annoyed when I said that in a fit of frustration I had counted his blazers and he has more than 40. He agreed that he needs to give away more than half of them.
I did finally deal with the slow leak in my side of our Comfortaire mattress and called the company. The good news is it is 7 years old but still has a partial warranty--it will cost about $35 including shipping for a new pump unit. I'm glad it is the pump rather than having to dissect the mattress.
A new issue of the Lewy Body Dementia Association newsletter is now available, with an article about the benefits of the right medication, in this case Aricept or Exelon. I have the impression that the organization is beginning to have a real impact on awareness of the disease. If you run into doctors who are not aware, the information to give them is on the web site, including a new article for emergency room doctors. Please, if you can, make a contribution to the association for its important work.
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