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Mom was diagnosed with short term memory loss dementia and complained of sporadic nighttime hallucinations. Her geriatric specialist weaned her off of Xanax suspecting that may be the cause. Fast forward one month and the hallucinations have increased significantly and she sleeps more than usual. Yet some days seems nearly normal. Dr. now suspects LBD. I'm not all that familiar with this form of dementia, but have read it is second in diagnosis to Alzheimer's. Has anyone have experience with this? I want to do what is best moving forward and would appreciate any input.

My mom was diagnosed with vascular dementia & also evidence of Lewy Body Dementia in 2015. She was having hallucinations, she might still be, but her speech is pretty much gone now so she can barely talk for us to understand her. The last one we know of was in January, and she LITERALLY fought 8 nurses & a Dr. She thought she had been kidnapped & was being put in a movie. She is immobile, can’t even turn herself over in bed, can’t stand at all, takes her over an hour to feed herself. She was even spitting on them! How she was physically able to fight like that I don’t understand! Had to be restrained & given two doses of Ativan, first dose didn’t affect her. My Mom is a very polite & gentle person!!! For financial reasons she is now in a nursing home.
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Reply to mollymoose
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My FIL had LBD. He had horrible hallucinations which to him were real, as well as other harmless ones like friendly animals coming to visit all the time. He finally had one he thought his unit was being bombed and in order to protect himself he tipped everything over and created a huge mess. He was terrified of being alone after that. As he was becoming quite aggressive and needing lots of care, he forgot how to dress and eat, he went into a lovely facility where he was well looked after and somebody went to see him nearly every day. We were thankful he always knew who we were and also said ‘I love you’.
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Reply to Keriana
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You can see all the past posts on LBD by clicking on 'Care topics' on the top RHS of the screen. Scroll down, or click on 'L' and the first set of articles, questions and discussions is on LBD. After you've read the past stuff, ask again about things that are affecting you. Best wishes, Margaret
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There was a long time poster on this forum whose husband had Lewy Body.
JeanneGibbs took care of her husband Coy for 10 yrs at home. You might find her posts helpful. She also shared caretaking with her sisters for her mom.
You can use the search to find her posts.
Ive attached one where she mentions his care team. I found it by putting just Coy in the search and then looking through the various posts.

https://www.agingcare.com/discussions/unexpected-post-caregiving-effect-163500.htm?orderby=recent
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Reply to 97yroldmom
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Countrymouse Sep 10, 2019
Perfect - that's exactly who I thought of immediately, too. Jeanne is an inspiration and an example.

And a fabulous cake-maker :) May she be thriving.
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My brother has a probably Lewy's Body Dementia. Newly diagnosed in February. He is very rational and appropriate, but the symptoms along with some changes in white matter of brain lead to a suspicion. And of course it is only on autopsy that it is known for certain. Are you aware that this is likely what Robin Williams had? That Ted Turner has it and some others well known?
I am absolutely fascinated with my brother's hallucinations. Many are not troubling to him, most occur at night, often after he has got up to go to the bathroom.
He has some balance issues, which can also happen with Lewy's but in his case the lucky guy has a benign brain tumor, likely there above the medulla, balance center of the brain, for decades and getting more and more pressure causing balance issues. There is quite a lot of urgency and more frequency with urination, and so far, with a bit of short term issues, a bit more anxiety for certain, and a bad reaction when anxious, that's it for him in this early stages if that is what he has.
I am utterly astounded by the way he can describe his hallucinations, almost like a movie, down to the way folks are dressed and what they look like. Also says he often has to work backwards from what he sees and perceives to what he knows to be real. For instance looking about 1/2 block in distance can mistake the wheel well and wheel of a van for someone bending over weeding with long black hair spilling over. He knows that isn't it and so he works out what he IS seeing, and when I look at what he saw I can "see" how he saw it the way he did.
We can't know where he is going with this. He had a bad car accident, at 85 won't be driving again, and has been in assisted living where he feels so much the "well one" that he feels like he is a care worker. He is moving back to his condo to give that a try. We are 3/4 state away from one another and I only can fly to him, and he will have to hire folks to take him shopping and etc. But this is a window of time he wants to try to have on his own if he is able. Scares me, but I cannot tell him no. He has given over the management of his accounts/Trust to me as POA and Trustee of Trust, so I am feeling quite lame myself, having to learn lots of new things I never wanted to know.
There is a lot of stuff online. More than really you need to try to absorb right now. And I will tell you Facebook has some good sites as well, with one man who has it and who lectures and does a FB page.
Good luck. Stay tuned. Hope there are others here that can support us as we move along.
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