sociability

I went with John for his annual appointment with his family doctor this morning. There really weren't any issues to discuss that John wasn't seeing other doctors for, so the family doctor said come back in a year. John's cholesterol numbers were improved.

We went from the doctor's office to the Alzheimer's early stages support group, so we were 10 minutes early. We talked for a few minutes in the car and then when other people started to arrive I said I was going to go in and be sociable. John said he was going to sit in the car and read until time for the meeting to start; 2 hours was enough sociability. I was startled by that, that he sees socializing as such a strain. The person he likes best in the group arrived late, perhaps it would have been different if that person had arrived earlier.

disappointment

We were supposed to go to the first meeting of an Alzheimer's Association early stages support group this morning. But John woke up during the night coughing and didn't get much sleep. He called the doctor and took the first appointment he was offered, at the same time as the support group. The doctor said it was just a cold and gave John more codeine cough medicine. I had told John not to take it (we had some on hand) because it was likely to cause hallucinations but he took it anyway this morning and said he didn't have any problem.

This kind of thing is hard for me because if I had been the one who was sick I would have taken much more seriously my commitment to the support group. John was positive about the group when we signed up in December, so hopefully we will get to the next meeting in two weeks and he will like it. I would really like to have a place to share the confusion of this stage when John is ok and not ok.

Alzheimer's support group

I went to my first Alzheimer's support group today. There actually is a local Lewy Body support group, but the first meeting I went to only had three people so it wasn't a place where I could get ideas from people with more experience of local resources. The group I went to today was about 15 people, a good size, but an odd mix with as many new people and and people still coming after their loved one had died as there were people in the middle of the process.

I did find the conversation useful--much of it about strategies for how to redirect someone. No one had any leads for for me on home renovation. I do have a couple of leads I have already been given that I haven't tracked down yet, particularly that my university has a Center for Engaged Aging (sounds like a tongue twister to me).

I think today's group would be useful if I were willing to make the commitment to go every month, but a weekday afternoon isn't an easy time for me. I'm going to try an evening Alzheimer's group in the next town over, which I should be able to get to more regularly. I'm spoiled by the Yahoo LBD spouses group, which is such a wise and frank group of people who have become experts the hard way.

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.