Dementia with Lewy Bodies

mw52

Registered User
Aug 25, 2006
32
Leeds
Hello to you all
I am trying to get some more information about Dementia with Lewy Bodies and have drawn a blank - apart from just the general symptoms, etc. I have tried to get onto the Picks Support Group Forum (which is where I have got most of the information available from) but without success.
I have read quite a few of the messages posted here and joined last week.
I hope there I someone out there who knows about this form of dementia. My mum has just gone into a nursing home and it has broken my dad's heart to let her go. He is 82 and has struggled a lot especially this last 12 months to look after her at home but now it's too much for him and she needs 24 hour care.
Thanks for reading
 

tedsmum

Registered User
Jun 28, 2006
34
My 86 year old dad has been diagnosed with what is almost certainly Lewy Body Dementia although it's only after someones death that they can be 100% certain. It started after my mum died with extremely vivid hallucinations, seeing people hiding usually in his bath, washing machine or bed. It progressed really quickly and they were hiding things stopping him washing or cooking or sleeping. He then began talking to them,telling them off, for some reason they were children or monks.He then began wandering going to shops in the middle of the night. putting his bin out at 3am and stopping people in the street asking them to get these people out of the house.
Things escalated and he was taken into a mental health unit two months ago where he still is awaiting assessment.
I've been told that this form of dementia can be fast moving and I have found this to be true in his case. He now no longer really recognises me but sometimes thinks I am his sister. He still has animated conversations with the imaginary people he still sees vividly all the time. On the plus side he usually thinks he is staying in a holiday camp and has settled far better than I dared hope.
Hope this has been of some help and I also was wondering if anyone could tell me the difference between LBD and Vascular Dementia as this has also been mentioned.
Take care you've come to the right place for support I don't know what I'd have done without TP
 

mw52

Registered User
Aug 25, 2006
32
Leeds
Thanks

Thanks for your advice and suggestions.
My mum has hallucinations - but nice ones - usually babies and young children. Since she fell in April (when she had gone to a nursing home for a week's respite) she hasn't been able to walk unaided so we don't have the wandering problem. She often thinks I'm my sister and vice versa and often confuses me with my niece - at least we are her family and she knows it's someone who loves her. But sometimes she doesn't recognise my dad and that's hard for him. She often asks when she is coming home and why she can't come home but the staff have told us that when we aren't there she's fine.
She's well cared for at the nursing home - she's had at least three baths and her hair shampooed and a visit to the hairdresser and only been there a fortnight. She was at the medical assessment unit for two months and my sister and I kept asking if she could have a bath/hair wash but it never happened.
I'll try the website and let you know how I get on.
 

mw52

Registered User
Aug 25, 2006
32
Leeds
TP is the best!!

Hi - struggled to find my post!
I've been on the websites suggested thanks for that. The Lewy Body forums were very difficult to access and mostly in America so I'm sticking with you guys! You are all fantastic and every time I read I usually find something to laugh at - and usually cry!
(There was a chocolate puzzle - which I can't find either - that was a good one!)
Love to all