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'Caring for my husband who has dementia with Lewy bodies': a personal account by Meg Wilkes

Lady M

Registered User
Sep 15, 2018
Dear Hazara 8
What a kind and supportive message. I have only just seen it not least because I don't always get on very well with the technology on the website!
It's very good to know others have real insight into LBD. I'm feeling rather overwhelmed lately. Since my husband was diagnosed (rather late) in April he's deteriorated a lot. There's less and less that he can do and his nights are very poor. We're receiving good care and support from the local Consultant who is seeing him monthly and has found that he can tolerate Trazodone at night which takes the edge off his night time terror which is a huge relief. But in general terms movement and cognition are going downhill fast . From example, a few weeks ago an OT visited and recommended all sorts of aids to help him also stair and other wall rails. At the time I was wiling to be guided by her but didn't really see the need for it all. The stair rail fitting has been delayed until next week and it's currently a case of hoping they are in place before he falls down the stairs. It's hard to believe so much can change so quickly. So whilst I generally plan ahead and am pretty organised I feel everything is happening so fast. My husband and I are starting to think about planning respite care because I could forsee he and/or I would be helped by it especially if things dipped suddenly. We're fortunate to be receiving help from agencies (AGE UK, Carers Organisation etc) and medical help but it's hard not to feel on one's own with it when family and friends cannot understand the reality of the psychiatric elements and I wouldn't want to alarm them. One lives at a distance near his wife's family and our daughter has her hands full with a young family therefore if anything I'm trying to protect themy.
Well this has been a bit of an aimless rambled but it's been good to communicate with you . Very best wishes, Christine
I am very new to this site my husband has suspected LBD, still not a confirmed diagnosis but I have no doubt!
It’s two years come Christmas that I first went to GP ( hubby was falling , shuffling etc) I thought Parkinson’s!
But more to the point, I can only agree with your statements, however when I mentioned to our children they had all suspected something and are supportive, so try not to keep to yourself! I have just written this after sitting here for three hours without him speaking , he’s either asleep or watch’s T.VWithout the sound? lly and feeling sad, but hoping for a diagnosis so that maybe we can get some proper advice!I do hope that using this forum has help you, I have never heard of LBD until I saw it written by the consultant !
I suspect that you will benefit greatly when things for safety are in place and you can at least have some feeling of relief that things are in place to assist.
Wishing you all the best and a peaceful and restful night!