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.