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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Friday, May 23, 2008

should we move?

Pearose makes an excellent point in the comments to the last post that it would be better to move while John still can learn the space.

We would move to another house in the same town, where I work, so it wouldn't get us better services. I would like to move back to the house we used to live in, which we kept when we bought a bigger house. It is rented to students so we probably couldn't start renovations until next summer. It has a finished basement that is ground level on two sides so you can walk in from a carport with no steps. That would be John's space. We lived there for four years when we were first married but John doesn't seem to have the good feelings about it I have. He doesn't want to move and have to get rid of stuff, while I want to move while he can still be of some help. I would like to move to a smaller house because it would force us to simplify, and I want a house where his disorganization doesn't take over the public parts of the house. Or would moving just be too stressful?

I need to find an expert to advise us on whether the lower level of that house could be made into a nice safe space for John. A friend recommended a pamphlet on such issues and then finding a Certified Aging-in-Place Specialist. The only person who comes up on that search in this area is a builder, so I'm not very hopeful. Another question for the Alzheimer's Association.

That thought finally motivated me to make the contact. I have so many negative feelings from my grandmother's dying from Alzheimers that it is particularly hard for me to identify with the Alzheimer's Association. But I got an email back almost immediately from the program director of the state chapter, who lives in the same town we live in. And she said that someone in the next town over is starting a support group specifically for Lewy Body Dementia! I was feeling no one in this area had heard of it. I am much relieved that I have found people who know what is available locally.

If the Alzheimer's Association has on-the-ground support here in rural South Carolina it should be helpful almost anywhere in the US. I recommend searching by state (click on the map to get to the web page for your state chapter)--their zip code search did not give the office closest to me.

3 comments:

pearose said...

Aging in Place is my specialty and I will be glad to help you from a distance if you ever have any questions. If you would like to contact Pauline, she can give you my work address and we can go from there.

Joann said...

Geeeezzz, I had no idea how quickly things were progressing. I can't begin to know the anxieties you are having to face. I will say that we moved Betty to a new home when she was in about stage 4-5 and she had no problems with it. We had handrails installed in the long hallway to help her steady herself, and grab-bars put in the bathroom along with toilet rails. She is stage 6 now and is still able to live in that house. We're even entertaining the idea of moving in the next year or two and figure she'll adjust. I'm glad you got help closing John's office. Such a sad thing to do under these circumstances. I'm sure there are too many sad things all at once. I hold you all in prayer. I hope your vacation time can give your mind and body some rest.

Spouse said...

When my husband was diagnosed, several months after I had become worried about his condition, we were living in Hawaii. We had been there full time for 11 years. We did stay for another 4 years, till I decided that I could no longer keep up with fixing the errors he was making in the systems of our 6 acre coffee farm. Because we knew that some day we might need some kind of medical attention, we kept our home in California that had raised our daughters from kindergarten thru colleges & rented it for those 15 years. Coming home has been very good for both of us !
our home is all on one level, the yard is small & relative level, and many of our long time friends and neighbors are still here to give much needed support. He was able to remember where to go to the recreation center several blocks away for exercise class, for the 1st 2 years after we came back. Now however he needs to ask if he is going the correct way to the bathroom. I've found that in helping him, I need to make choices based on making it easy on myself.
I did make a new easy access bathroom, with a no door and no step shower. with a chair for drying and dressing just there too. it sure helps !!!
My advise for you on moving is -where will it be easier for you, as he will eventually not remember anyway.
Di