Lewy Body Dementia and hallucinations.

[Banjomansmate]

The Banjoman spends much of his time carefully picking up invisible threads or bits of dirt, holding them in his hand then placing them on the nearest flat surface, he’s been doing it for a couple of years and picking up invisible bits of dirt from the floor before that. When I mentioned it to a Social Worker today she said “Oh yes, that’s the Lewy Body causing hallucinations “. Have other Lewy Body patients done something similar, I haven’t seen it mentioned elsewhere?

 

[Linton]

The Banjoman spends much of his time carefully picking up invisible threads or bits of dirt, holding them in his hand then placing them on the nearest flat surface, he’s been doing it for a couple of years and picking up invisible bits of dirt from the floor before that. When I mentioned it to a Social Worker today she said “Oh yes, that’s the Lewy Body causing hallucinations “. Have other Lewy Body patients done something similar, I haven’t seen it mentioned elsewhere?

 

[Linton]

Hi.. I have just put a post asking for any suggestions in dealing with the hallucinations that lewy body dementia sufferers have.. Very hard to know how to deal with them.. I'm sure there will be lots of advice on this forum.. Keep going xx

 

[Cat27]

Have you seen these factsheets?
https://www.alzheimers.org.uk/about-dementia/types-dementia/dementia-with-lewy-bodies

https://www.alzheimers.org.uk/about...564213211-1070647703.1533113823#content-start

 

[Juliematch]

My dad has Lewy body and sees things like insects or some sort of creepy crawly. He is worse when he has an infection brewing.We had wooden floors in his room and the dark knots confused him.I just use to pretend to brush them away and then he was happy.Also he is not good with patterned carpets or dark tiles.He thinks the tiles are holes in the floor.Dad moved into a care home and we now have trouble with mirrors .He just does not understand reflections or recognise himself in a mirror.Has anyone noticed this in their PWD with Lewy body.

 

[Banjomansmate]

Thanks Cat27, I had seen the Lewy Body one but not the visual perception one although I have read other articles about it.

My major interest is whether any other LBD sufferers did something similar. When the Care Home staff are talking about him they indicate who they are talking about by copying his careful picking up of an invisible thread. Everyone knows exactly who they mean!

 

[Banjomansmate]

Hi Juliematch, The Banjoman was a bit paranoid about seeing insects when he was in his flat and would take a ridiculously high step over the edge of the rug when suffering from an infection. So far he hasn’t had any trouble with mirrors as far as I know.

 

[Juliematch]

We have trouble with reflections in windows as well as mirrors so the curtains get pulled before it gets dark.

 

[LynneMcV]

The Banjoman spends much of his time carefully picking up invisible threads or bits of dirt, holding them in his hand then placing them on the nearest flat surface, he’s been doing it for a couple of years and picking up invisible bits of dirt from the floor before that. When I mentioned it to a Social Worker today she said “Oh yes, that’s the Lewy Body causing hallucinations “. Have other Lewy Body patients done something similar, I haven’t seen it mentioned elsewhere?

My husband regularly did this too. It doesn't seem to be specific to LBD patients though. Although specialists maintained an open mind about my husband having LBD, they mainly worked on the basis that he had Alzheimer's. I did see it happening quite often on the dementia wards he was on though and it definitely affected folk with varying types of dementia.

It didn't cause him distress at all and we came to accept it as just part of his symptoms. Things like wood grain effect flooring didn't help much - his brain seemed to interpret the wood grain pattern as moving specks, possibly insects, on the ground

 

[Izzy]

My husband had Alzheimer’s and he would regularly pick up invisible threads. My mum
Has vascular dementia and she regularly went through motions with her hands. She used to be a jute spinner and we wondered if she was going through some of the motions of her work.

 

[Banjomansmate]

The jute spinning point is interesting Izzy, when he was in hospital after he fell and broke his femur and was “away with the fairies” for some time after the operation, he was apparently doing some different actions and his sister wondered if he was restringing a guitar or banjo!

 

[Banjomansmate]

Hi Lynne, I hope your “new normal” is coming together now.
As you say, it doesn’t bother him at all and I am used to it, I even managed to get him to stop and hold my hand for a little while when visiting him on Tuesday.

 

[LynneMcV]

Hi Lynne, I hope your “new normal” is coming together now.
As you say, it doesn’t bother him at all and I am used to it, I even managed to get him to stop and hold my hand for a little while when visiting him on Tuesday.

Thanks @Banjomansmate - yes all is good with me and I am feeling positive and gradually moving forward , thank you for asking.

I am glad you are getting to spend some quality time with The Banjoman. I always found it very comforting when my husband was happy to sit and hold hands, which, thankfully, was quite a lot of the time xx

 

[Linton]

Hi.. After struggling to cope with the hallucinations and paranoia my OH suffers from daily.. With the help of others on this forum.. I think I have found a coping mechanism... early days I know, but a good day today so hopefully I'll be able to cope better.. Thanks to all xxx

 

[Banjomansmate]

That’s good to hear Linton.

 

[Larker]

Hi.. I have just put a post asking for any suggestions in dealing with the hallucinations that lewy body dementia sufferers have.. Very hard to know how to deal with them.. I'm sure there will be lots of advice on this forum.. Keep going xx

I wonder the same. My husband has Lewby Body Dementia. We saw all the professionals at the time of diagnosis but now we are on our own. I just dont know what to expect, what will come next etc. Life is pretty scary.

 

[Linton]

Hi Larker.. Its good to hear from others going through the same struggle.. My husband was diagnosed in February.. But it had been clear for a few years something was wrong... I am coping better with some aspects.. The going to the loo every hour is eased for us both with the cathatars.. The hallucinations are a different matter.. I cope a bit better.. Learnt from this forum.. I go along with his talking to the children and others who appear in the house.. Locking and unlocking doors.. but it gets very wearing..as in the evening it can be relentless.. I do find lots of advice here so hope it goes well with you.. Keep going