It's really hard to stay focused on what plan is best for mom. She has bad times, down times, but is still very physically able. Sometimes she seems near normal and I start thinking of a little more independence for her which she desperately wants. Then the next day she's off again. This is very hard on her too because she only sees or recognizes the good days and doesn't understand the restrictions the AL has about going outside alone, or walking to town. It seems we must plan for the bad days, which doesn't then allow her freedom on the good days. I think it's the right thing to do but it sure is hard. We get her out often but she wants her own freedom.
Fluctuation in cognition is a hallmark of the disease. If someone isn't highly changeable from day to day or even hour to hour, they probably don't have Lewy Body.
Whenever my husband had several good days in a row, I began thinking of him as "normal" and it was always a shock to have the reality of the dementia show itself.
I was very lucky that my husband understood his diagnosis. In a "good" period I could say to him, "Yes, of course you can carry a loaded try. You've been doing it forever. But I'm worried that Lewy may trip you up. Why don't you go get our silverware and napkins, and I'll take the try to the table this time." Of course this kind of reasoning wasn't effective during a bad period, but it was extremely helpful to me that he understood he had limitations.
I hope your LBD loved ones can have as much independence as is safe. And this will vary from day to day. Sigh. It is hard!
It seems to me that having a good experience is worth being exhausted the next day. My husband golfed with a league for persons with handicaps. The 9 holes wiped him out. So what? Why would it be better for him to sit around being bored but not tired?
The up-and-down experience is the nature of the disease. It will be there no matter what you do or don't do. Err on the side that gives him the most happiness!
Your Mom's neurologist should be treating her depression with an antidepressant. If it's not working, give the doc a call.
Blessings,
Jamie
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