The Lewy Body caregiver experience - so far...
First I want to say that I'm sorry we're all here - but since we're in this situation with a loved one with LBD, it's certainly a blessing to have a forum.
I built a duplex in 2000 so that my recently single mom could be closer to me. She was 70 at the time and robustly healthy. She moved into the apartment in my home and enjoyed gardening, many social activities, and the cats we adopted. At age 76 she was out in the side garden one afternoon and found that she could not get up from the ground. The neighbor helped her back to her sun porch and I was called home. She said simply 'my legs wouldn't work'.
We went to several neurologists - her muscles and nerves were fine. It was an episode that seemed to resolve, mostly. Initially. Stairs became increasingly more difficult for her to manage, but she would try, hanging on to the rail with both hands, moving slowly. Her once quick walk became a shuffle. She began forgetting things and we hired a personal financial assistant to help with bill paying. She had an accountant she still used in her home state for taxes, and the fact that she stopped paying taxes in 2005 sort of fell through the cracks. I'm working on 2006 and 2007 still.
We bought her a lift chair, a shower chair and a walker, and installed grab bars. Mom became incontinent and began to need help with her medications. We hired in-home care givers, and I watched out for her when they were not with her. As her ability to do normal activities diminished, she felt more and more isolated at home. She told me she wanted to move to assisted living because there were more opportunities there to interact with others. I undertsood and agreed with her decision. We spent last Christmas at home, then in January I moved her to assisted living. She selected the residence herself - the one closest to our home.
We weren't absolutely sure it was LBD. We admitted her to a hospital to drain some cerebrospinal fluid to check to see if maybe normal pressure hyrdocephalus was responsible for her symptoms. Her condition did not improve after the removal of the fluid, making this diagnosis unlikely. So it's LBD by process of elimination. She had a meltdown there at her first assisted living residence, and was miserable. After several months we moved her to an assisted living home a little farther away, but nicer and with more amenities. She had met a man at the first assisted living place (!) and he could not move to her residence do to his unmanageable diabetes, so they both moved to a modern and upscale luxury assisted living residence. His health was poor, and she was declining mentally. The relationship was doomed. Mom was very depressed by the breakup but never seemed to bounce back in terms of her mood, agitation, and ability to deal with frustration. She had several public outbursts, and the manager of the new facility asked that she be admitted to the hospital to work on stabilizing her meds.
Turns out she was on too much sinemet (sp?) and that in high doses this drug can cause delusions and agitation. On a reduced dose she is friendly and docile. However, caring for my mother is still a great deal of work and I think the manager at facility 3 can pick and choose and had no intention of letting her back through the doors. The manager suggested a rehab hospital owned by the same company for a month... then moving back, perhaps, if she improved. The rehab hospital is unacceptable, and she has no real medical need now that her meds are stabilized...so she's moving back to facility 2. What a mess. This will be 4 moves in one year.
I wouldn't have minded this roller coaster year and all of the inconvenience so much if any of it had helped her. She's declining rapidly before my eyes. In August she could dress herself and use the toilet herself. Both slowly... and with difficulty - but she could do it. She enjoyed conversation and social interaction. She seems to be failing physically and slipping away mentally. On a good day she can take a few steps if you stand her on her feet and hold her hands. Now it's getting difficult to move her on and off the toilet, and in and out of bed. She's essentially wheelchair bound. I had tried getting her a motorized chair last summer, but she was dangerous with it, and the salesman refused to leave it with her. Devastating.
I talked to her tonight about moving back to residence 2. She didn't seem upset. They have an adjacent memory care facility there that she can transition to without moving. We don't discuss her dementia. She's frustrated being trapped in a body that doesn't work properly. She often forgets that she can't get up, and tries... and is surprised. She does better with a great deal of distraction and attention. It takes a village. She's effectively been kicked out of a really posh residence where she has a 2 room apartment and they serve every meal on tablecloths. So ambiance is definitely going to take a hit. Now she needs the best care, so I think this next move is the right one.
2009 was rough, and I know that things can and will get worse.
I'm guessing that the key is to try to provide the best possible quality of life for the LBD patient while staying physically and mentally healthy as possible as a caregiver.
I wish I knew what to expect so that I could prepare better.