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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.

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can anyone out there tell me if travel in a motorhome would be good are bad. The Dr. seems to think it would be nice for her to see different things, also a smaller living space would help with orentation I don't know but it seems just sitting here all the time is killing us both. TESS
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Reply to whiterose
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Kim2Bake,
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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Reply to jjariz
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Please note that there is a good Lewy Body support group on this website. Membership is required
www.groups.io/g/LBDCaringSpouses
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My mom has Lewy body I'm worried for her she seems so depressed and sad most days I can barely get her out of her bedroom for longer than 15min she will come out to say a few words then it's back to the bedroom. Does anyone have any ideas.
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Reply to Kim2bake
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Are you familiar with the LBD Association website? (LBDA.org) It has a wealth of information about the disease.

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!
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Reply to jeannegibbs
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I nearly took the step to move mom to semi assisted living. This would have been against the doctors recommendation. She was doing so well for a few months I just felt it was time. I began to wonder about her diagnosis. Then she had a very confused couple of days and some paranoia again. I put all plans on hold.
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Reply to NightOwl
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I am in the same boat with my husband's extreme ups and downs with LBD. Sometimes he tracks and is very aware....the next day he can hardly wake up to get food into him. The care facility is nervous when I take him out but once a week we go to church and Denny's. Sometimes he just sleeps through the whole service but still requests to go. The next day he is exhausted. Not sure how much longer to continue.....always a guessing game.
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jeannegibbs Jun 15, 2018
JoAnnS, I hope you can keep taking your dear husband out for a long time. Why does it make the facility nervous?

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!
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I am in the same boat with my husband's extreme ups and downs with LBD. Sometimes he tracks and is very aware....the next day he can hardly wake up to get food into him. The care facility is nervous when I take him out but once a week we go to church and Denny's. Sometimes he just sleeps through the whole service but still requests to go. The next day he is exhausted. Not sure how much longer to continue.....always a guessing game.
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I'm in the same boat. It's heartbreaking on my mom's good days when she can't understand why she's in the memory care unit. All she wants is to go home to be back with her husband. Reasoning and explaining never do any good - she just can't see that she suffers from dementia as well as the Parkinson's like symptoms. I just have to keep reminding myself of how bad off she was living at home before we moved her. She refused all assistance at home and often spent the entire day laying in bed in her own urine and feces. Now she's clean and safe everyday, her room doesn't smell of urine, and our family is able to spend time visiting with her as a family instead of as caregivers. It's definitely the right thing - both for her health and ours.
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Reply to johnnyk
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I'm following her as well. Every good day has me thinking that my Mom could move back home and every bad day makes me wonder "what was I thinking!"
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Reply to Issybeau
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I am following this. My father just moved back to the midwest to be closer to me. We are sorting through an understanding of his abilities and limitations. Just saw a geriatrician who suspects Lewy Body Dementia.
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