Has anyone had the experience of their LO insisting that they know what they are doing and constantly saying "Im not crazy" or something similar? My Dad has been recently diagnosed with LBD and in his more lucid moments he insists he is fine. Then there are the other moments of confusion, aggression, combativeness and mania that they are trying to get under control. He is 90, and I am sure does not understand what is happening. How do explain the disease to your LO when you are trying to figure it out yourself? Any suggestions would be valued greatly. Thanks!

It isn't easy. At a support group one time, the moderator told us to assure the LO that dementia is NOT a 'mental illness', that they are not 'crazy' but have a disease of the brain and that it is treatable but progressive. That we will do all we can to keep them as well as possible for as long as possible.

But there is no way someone with LBD can fully comprehend what is going on. So be prepared for denial and anger. Remember, too, that in their lucid moments they know things are not 'right' and are frightened and grieving their loss of function.

Thank you! What you said makes perfect sense. I guess I can't see the forest for the trees.

What Pat says is how I've tried to explain to my dad what's happening with him.
I tell him that he has various symptoms because his brain isn't working properly and all those meds he takes are to help his symptoms. That seems to make him a little calmer, as he is very aware that he takes a ton of meds every day. I also tell him I'm in continual contact with his drs. to make sure they are trying to help his symptoms, and he says "ok, thanks" and that seems to make him not feel so hopeless and helpless.
It's not easy. Hang in there! There are some other posts about this you might read too.
Lynn

I try to explain that it is a disease of the brain, somewhat like cancer, it destroys part of the brain. My mother lived with us for 6 months before she died, she had cancer that spread to the brain. Frank saw all the things my mother did and went through as the cancer spread, so I thought he could connect. He doesn't seem to react to much, very little emotion and will seldom answer me or acknowledge that I've spoken. I try not to ask questions or talk to him unless it's necessary or unless I forget. I get so frustrated when he just stands there and looks at me or walks away. I KNOW, it's not him, it's Lewy.

My dad's latest thing is that he doesn't want to eat in the dementia wing, because he "doesn't want to eat with those little old ladies with dementia" and "I don't want to go over to that loony bin". He asks very rational questions, but doesn't like the answers I give him, no matter how much I try to soft peddle the answers because his thinking is delusional. I am glad that I at least did tell him that he does have dementia when he asked a few days ago.
Now he wants me to call him every afternoon to tell him whether or not he can eat in the regular dining room. No matter what I tell him, he says "horse s**t" and gets really mad. It's a no win situation, again! Starting Monday I'm going to "forget" to call him for a few days.
(BTW, they edit swear words here!)