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jmacleve Asked November 2016

My husband's Lewy body hallucinations. Anyone else gone through this?

My husband just put me through two nights of hallucations, which involved suddenly beginning to talk to people who weren't there. Even when I woke him up, showed him our room, told him he was in our apartment and asked him who I was (which he knew) he still pointed to three "people" (who weren't there, of course) and said "What about him and him and her"?) I am waiting to get him into the neurologist who saw him in hospital (he's recently come from rehab). She felt LBD was a possibility and I want to learn more. If you've gone through this, I'd appreciate advice/feedback, etc.

Lillypad2 Nov 2016
Not sure what type of dementia hub has but lives in a world of hallucinations. He has conversations with our dog and then will tell me what she told him. When we eat dinner most of the time he thinks there are others at the table as well. He has many more hallucinations too many to mention.

Rainmom Nov 2016
jmacleve - this isn't an area that I have any experience in - but I wanted to say I'm so sorry that you and your husband are having to go through this. I'm certainly no expert by any means regarding dementia but from what I have learned over the past few years- Lewy Bodies Dementia seems particularly disturbing to me. Please don't forget to take care of yourself and seek help for you, when you need it.

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jeannegibbs Nov 2016
Hallucinations are common in some kinds of dementia. LBD is unusual in that they occur early in the disease. In fact, that may be the behavior that confirms the diagnosis.

My husband had hallucinations and delusions (sometimes it was hard to tell which) that did not disturb him. Some of the subject matter would have disturbed me, but he took it in stride. A body in our bed? Bats in the bedroom? Yikes! But he was not frightened or disturbed. He was just reporting. He found it interesting.

In general, if the delusion/hallucination is benign there is no need to "treat" it. Don't argue with it, either. (3 am: Honey, if the bats aren't bothering you, would it be OK if we wait until daylight to deal with them?)

Does your husband have the sleep disturbance known as REM sleep behavior disorder? (Acting out dreams.) That, too, is a tell-tale sign of LBD.

I'm glad you will be seeing the neurologist soon. A great place to learn more about LBD is the Lewy Body Dementia Association website, LBDA.org.

jmacleve Nov 2016
We've been through the UTI thing, but since we JUST went to the Urologist and got a clean bill of health, I know that's not it. This isn't the first time this has happened -- but it's been a long time and last time it was only one night.

pamstegma Nov 2016
Bring his entire list of medications to the neurologist. Very important! If he recently had surgery, get the anesthesia records too.

freqflyer Nov 2016
One possibility could be that hubby has an urinary tract infection [UTI] as that can cause unusual behaviorism in elders.

When my Dad had UTI, he was seeing ants everywhere.

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