LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Wednesday, November 26, 2008

where we are

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.

1 comment:

David Thomas MD said...

I like this post. You are open and candid with your feelings and frustrations. Unfortunately, you are going through what many caregivers experience. However, I sense you are adjusting in the best possible way.

In spite of what happens on the outside, he still wants to have a partnership even though he may not be able to do it or be able to express it adequately. If he's used to you always balancing the emotional aspects of your relationship, then I suspect that will not change for the better as time goes on. But bear with it. But just for today only. Tomorrow will be different.

David Thomas MD
http://knittingdoc.wordpress.com