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callie15 Asked September 2014

Anyone have experience caring for someone with Lewy Body Dementia?

Does the person you care for experience hallucinations?

2tsnana Sep 2014
My mom is delusional has been for years. Every so often I will find out from staff what she says is true. She kept telling me about a blond woman that kept coming into her room and putting her feet on her bed. She said she wants to get in bed with me......I just nodded and smiled agreeing with all her suggestions...well, come to find out there was a blond woman and she was going into everyone's room .. I am learning at a slow rate to consider what my mom says before I just assume it is a delusion. The only one I know for sure is her roommate is comatose and my mom says she talks to her all the time. She says Betty is my friend ;-)

jeannegibbs Sep 2014
Captain, just because you hallucinate doesn't mean there aren't really bats in your bedroom.

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anonymous158299 Sep 2014
wow jeanne . i thought the bats in my bunker were not imagined . if they werent real then somebody broke in here and busted my flyswatter .. if i get my hands on some aricept i may snort a little line of it . im already seeing bats so theres my base line for the med trial ..
maybe when the ceiling snake gets a little bigger the bat hallucinations will resolve themselves ..

vilhelm grimm , goin back to bed .

vegaslady Sep 2014
Check out the Lewy Body Dementia Association for additional help.

jeannegibbs Sep 2014
I cared for my husband through a ten-year journey with Lewy Body Dementia. He had hallucinations early on. That is often the first symptom of this type of dementia. He continued to have delusions off and on throughout the journey, but the hallucinations stopped in the first year. I think it was Aricept that helped with the hallucinations.

What drugs is your husband on?

My husband's hallucinations were not disturbing to him. He saw a body in our bedroom but that didn't bother him, for instance. In that case there is no need to anything about the hallucinations. I remember this conversation at 3 am:

There are bats in the bedroom.
Baseball bats?
No. I see the little animals like flying mice.
Oh. Are they bothering you? What are they doing now?
They are just lying on the floor on my side of the bed.
OK. As long as they are not bothering you, would it be all right to leave them there, and I can chase them out in the morning?
OK.

It does absolutely no good to argue that what they are seeing isn't there. What they see is very real to them, and arguing only leads to anger and frustration.

If the hallucinations are less benign, then you have a different issue on your hands, and it is more important that the doctor try some remedies.

pamstegma Sep 2014
go up to the Search Site box and type in "lewy bodies" and lots of information will pop up.

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