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    Dementia Talking Point - our new name

    I like the new name. My husband has Dementia with Lewy Bodies which isn't well known (though not uncommon) and I am helped greatly by the Alzheimers Society. Hopefully there will be a spin off for fund raising too as people become aware that all types of dementia are included.
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    No light at the end of a dark tunnel

    My husband has Dementia with Lewy Bodies. He was diagnosed last April but has had symptoms for about four years. Anyway I felt I wanted to comment on the very confusing nature of the condition. Whilst everyone's symptoms are unique, I think my husbands experiences are fairly typical of DLB. His...
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    'Caring for my husband who has dementia with Lewy bodies': a personal account by Meg Wilkes

    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...
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    Very scary

    Bless you! What a predicament! Anyway, yes, I'm realising that I'm on my own in various scenarios where previously my husband could have helped. The ramifications of being a carer go on and on. Not sure if I'm in "L" plates or have progressed to "P". No, definitely "L". I certainly wouldn't pass...
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    'Caring for my husband who has dementia with Lewy bodies': a personal account by Meg Wilkes

    Thank you for your very thoughtful and heartfelt response to my post. I shall read and reread it. As I imagine you know too well, the mysterious mutability of the symptoms of Dementia with Lewy Bodies contribute to the stresses one faces. Until my husband and I eventually saw a Neurologist in...
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    'Caring for my husband who has dementia with Lewy bodies': a personal account by Meg Wilkes

    My heart goes out to you. My husband has DLB too but has not yet shown the extreme behaviours you and your family are experiencing. However I absolutely recognise what you describe especially the sheer frustration of trying to convey to medical professionals the awful reality of the psychiatric...
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    'Caring for my husband who has dementia with Lewy bodies': a personal account by Meg Wilkes

    I've been reading your post with very mixed emotions. It captures my experiences and is therefore comforting but the sheer awfulness of living alongside a dear husband slowly (or not so slowly) seeming to go mad with DLB is beyond my powers of description. Nights are much worse than days...
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    'Caring for my husband who has dementia with Lewy bodies': a personal account by Meg Wilkes

    I find that as my husband's symptoms are such that if we're out in company for relatively short periods of time, he appears to be perfectly normal. The reality of his inability to walk or stand except for brief periods, his dreadful nights, his expended periods of exhaustion and disorientation...
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    Help needed please

    Hello Pipeth I read your post with a combination of great interest and empathy because your husband's reactions and behaviour closely resembles my husband's and, like you I exist in an on-going state of confusion. I think the vaccilations you describe may be due to aninety about change so that...
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    Is the beginning of the end?

    "I feel you slipping away..." John Lennon, Losing You Yes, I'm in a similar place though my dear husband's probably more varied in what he can do and wants to watch on TV. Whilst our relationship has changed in recent years and I know there will be many challenges ahead, as things stand I...
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    Hello out there!

    Thank you, Marion Dear Marion, That all sounds like very good advice. Some I have already initiated e.g. POA, finance, but the useful tips regarding a diary etc are very welcome and I'll start that now. Being one of the organised of the species, I started an A4 manila folder for...
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    Hello out there!

    Thank you, Lynne. Hello Lynne I just wanted to thank you for your message, which certainly chimed with me. It's good to share! x
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    Hello out there!

    Hi Izzy! Just a little thank you, Izzy. It's good to know there's folk out there! x
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    Hello out there!

    Greetings one and all, I'd like to introduce myself to you and Talking Point. I've been browsing the site in recent weeks and have now signed up. I'm Christine, retired 3 years and vintage 65- a good year! My dear husband is 72 and retired at 65. Over recent years I have noticed changes...