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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Thursday, May 22, 2008

focusing on the future

In a group I was in yesterday, someone said: "Don't be anxious, God has a plan." Or from Exodus 14:14: "The Lord will fight for you, and you have only to keep still." (New Revised Standard Version)

I am anxious about the future. One of my reactions to the diagnosis was that I want to spend six months getting things in order, before focusing just on living in the present and taking advantage of the time we have. I've actually made some progress. I met with our lawyer and found the only thing I needed to do was to change my power of attorney from John to my sister. I haven't started working on the question of whether we should stay in this house or move, but I've got some idea of what the next steps are. We are making progress in getting our financial affairs in better order. The financial planner is looking into an impaired risk annuity for John's retirement savings. I just heard that I was approved for long-term care insurance at the preferred rate--too late to get it for John but I now have it for me.

But I can't imagine what I will do when John needs full time care. I thought I could do some research and at least understand the options, but I'm not finding decent options. I don't want to retire. There is adult day care in the area, but I wouldn't be able to get him up and there and still get to work at a decent hour--I'm an early riser and he isn't. If he needs more than a sitter, full time care at home is likely to be too expensive. The local nursing homes don't have separate dementia units. I hear the closest nursing home with a good dementia unit is in a city 40 miles away. I guess it is time to call the Alzheimer's Association, as the most relevant organization that is actually on the ground here.

2 comments:

pearose said...

One of the benefits of moving sooner than later (if the services you will need are not nearby) is the new spatial configuration has a chance to be committed to John's long term memory. It may increase his disorientation if the move happens later, because of the short term memory issues in the later stages. Unfamiliar shadows, outdoor shapes, noises, etc. may increase his confusion and increase his dependence on you if a move happens later. His level of feelings of vulnerability will be raised.

I don't recall if you've mentioned that you've lived in the same home for a while, but his ability to 'read' and understand his living environment will become more of an issue. 'Social actions' and responses to one's environment are more easily remembered than 'facts' as the disease takes it's toll on memory.

Anonymous said...

Stella here: Your research and thoughtful consideration will be a guide line for others to follow, thinking, "Hey, maybe I should be doing something along those lines", instead of just waiting for things to happen and then reacting. I'm interested in everything you have to write.