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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!


New member
Oct 24, 2019
This is the reality of DLB. As a carer, I find life is lonely and isolating. We have no children and friends are a distance away as they are related to the hobbies we used to enjoy. I sleep in another room now and leave the door ajar, but with something heavy behind it that will make a noise if I have not already woken up when my husband gets up.


Registered User
Oct 23, 2018
Thank you for that Christine. What a long nightmare for you both. Your post proves just how valuable 'awareness' from those who care or are directly involved(partners etc) in this whole area of dementia, truly is. Where clinicians might seem vague or perhaps not really in tune with the sheer depth of day-to-day trauma, simply due to the nature of their regime and possibly not an in depth association with dementia per se, we, as carers/partners see in detail both physical and psychological outcomes/presentations. That is really so very important in any context, especially if and when hospitalization comes into play.

DLB is not so common as AD, but I see it in the Care Home where I work as a volunteer. It often mimicks Parkinson's in respect of movement (as you have shown earlier in your post). They always suggest early diagnosis is imperative for DLB and this must be an irritant for you based upon your own story. I trust you will already have spoken with the applicable specialist, with regard to appropriate medication - a tricky area here. Beyond the pharmaceutical, I have seen positive reactions to music therapy in the Care Home. But as stated earlier, the one-to-one which you will know all about in depth, is very different. In the Care Home one has
both the environment geared to dementia, numerous Carers, the always revealing 'play off' between residents (when what seems to be nonsense, actually works in terms of communication, i.e. dementia world). Night time brings about its own challenges, even if talking about depression (my own direct experience a decade or so ago) as it magnifies and seems prone to a range of symptoms which are subtle and yet profound - they feel very real and yet where do they evolve from? The brain is still largely unknown and a damaged brain moreso. But, as I find almost daily in the Care Home, once you apply 'humanity' to even the most traumatic situation, whether by a hug or simply being there to comfort and calm, it is not hopeless. I mentioned once that as a child I experienced truly terrifying nightmares. My father would come to the bedside, hold my and, often for hours, until I fell asleep, calmed and comforted. Different from DLB and dementia of course, but something basic, primeval, not easily answered nor in need of too much introspection - our humanity. And in those early hours when you are on tenterhooks, probably exhausted and in and out of despair, that might seem rather simplistic, but without that unique human element I feel we are lost.

And again, your posts are so very valuable. You are living the situation with your husband and that truth set down with all the inherent emotion and angst, provides solace and genuine awareness for those who just might have been disregarded or let us say, not taken too seriously in early days, as with yourself.

With warmest of wishes.

I too know that feeling of. What can he do. What can I do Does he know me?
DLB. Losing speech losing mobility not getting to the toilet because he cannot ask.... His heartbreak at that, I think that was the point he gave up
The misery of the long nights. incontinence, which broke his heart, although I found that one of the easiest things !
shall I stay? . Or leave him.? He asks take me home or push off. More tears.
then some days. I will be ok. I will be good. Don’t worry I love you. Come back later
Now I cannot go back. He died on 1st. April, his sons not allowed to see him. But I was there
Now he’s gone, my heart aches .
What am I for now???


New member
May 21, 2020
I’m on my phone and can’t open the file

I feel it’s positive that people do write warts and all accounts of dementia. I do understand that it could be frightening for some one diagnosed, but I feel if there was better understanding of the disease by professionals, maybe, just maybe life wouldn’t be such a struggle it is now
The professionals I have encountered have had no real understanding of what it means to be with a sufferer living 24/7/52 .it is hell. You are a slave doing everything that is necessarily for daily life and constantly sorting out the extra problems they make. There is no affection and often anger and arguementiveness. I escape to my room but I have to be alert. My life is finished as there is nothing to look forward to after 48 years of marriage . I feel I can’t tell this to my daughter as this would spoil her life as well


New member
Dec 2, 2017
Jude48 I have only just read your post and I can relate to your feelings so well. We have been married for 53 years and my husband has deteriorated so much in the last few months. I have a son who supports me as much as he can, but I do not want to tell him everything and make his life hell as well! I try so hard to keep M calm, but then I ask a question and get a gobbledegook answer and I forget all my good intentions. I feel my life is finished too and sometimes I just wish it was all over.


Volunteer Moderator
Feb 27, 2015
Jude48 I have only just read your post and I can relate to your feelings so well. We have been married for 53 years and my husband has deteriorated so much in the last few months. I have a son who supports me as much as he can, but I do not want to tell him everything and make his life hell as well! I try so hard to keep M calm, but then I ask a question and get a gobbledegook answer and I forget all my good intentions. I feel my life is finished too and sometimes I just wish it was all over.

Welcome to TP @Kas445


Registered User
Jul 21, 2018
Well, reading all this has really given me lots of food for thought. We’ve been very lucky to have been referred to a neurologist at an early stage. We’ve been going for some years now. He mentioned DLB years ago, but did not give it as a diagnosis. He never dismissed us, even though my husband performed so well in tests. In fact he asked him to come as an example of we don’t know what when he was giving seminars to students. He now talks of dementia with Parkinson symptoms. I suppose this is the diagnosis, which we haven’t fully noted. I can see we’re at an early stage, although he did let slip and call me a carer at our last appointment. And there have been big changes recently.

So many of the earlier symptoms certainly resonate. Now I really know what’s ahead. Not sure whether that’s good or bad!


Registered User
Aug 27, 2021
This chapter was written by Meg Wilkes, and is taken from the book Dementia with Lewy Bodies and Parkinson's Disease Dementia.

Meg writes about how her husband's symptoms developed, the guilt she experienced as a carer, and residential care among other things.

Here are a couple of quotes:


A frequent cry from carers is “no one can understand how it is unless they’ve been there”. It must be equally true for those we care for. None of us has the full picture. I am sure that understanding and knowledge will grow if professional and informal carers are more honest with each other, more courageous, trusting each other’s expertise.

When I arrive, he greets me briefly, often with a smile, though sometimes he doesn’t know me. He usually has something to tell me ... I long for some sign of affection, some reassurance that I am still special to him. Mostly, I have to be content that I am the one he takes for granted.


The book was edited by John O’Brien, David Ames, Ian McKeith, Edmond Chiu (Taylor & Francis 2005), and has been reproduced with the permission of the publisher.

We hope this piece will bring comfort to those of you caring for someone with dementia on TP who have been, or are going through, similar situations to Meg's.

Talking Point Team
Meg’s account is ‘spot on’ my mum and I often discuss where dads train went during the night, we’ve been to Singapore, Australia even rode a bike from Newport to Swansea. Dad says he’s going to retire soon and wants me to go in and speak to the head of HR. Of course he retired 30 years ago! We’ve had tigers on the roof opposite, a church spire in the garden. Oh and he often asks us when the men are going from upstairs etc.
LBD is heartbreaking from the need to touch their excrement, lack of awareness, inability to walk, eat. Dad falls asleep eating etc.
It seems that people truly are ignorant to the characteristics of LBD and worst of all would prefer to remain that way. Also professionals often sit in their ivory towers, dishing out medication, some of which caused my dad to develop epilepsy. Unless professionals and the like spend more time listening to people who work on the coal face with LPD it will forever be a misunderstood unknown. If I can read these accounts then a compulsory order should be given to all professionals to use these accounts for practical learning. Doctors don’t know best!!!


New member
May 9, 2021
My OH has LBD and much of Meg's account resonates. My OH can be charming and presents well to anyone outside of the immediate family, even discussing current affairs. So much so, that our doctor diagnosed 'marital difficulties' after a delusional episode. The inability of a highly intelligent man to do the simplest of arithmetic, his unkempt appearance, rapid deterioration in driving ability and sleep problems were not considered as part of the whole picture. Looking back, he simply came up with plausible explanations.

It took 5 falls in one week and a traumatic incident in which he accused me of something terrible before we finally got a diagnosis. The 5th fall happened the morning after the traumatic incident and I insisted that the paramedics take him to hospital because I could no longer cope. At this point I was accused of Active Abandonment. Our family nearly feel apart.

And yet his care plan, which was based on a 10 minute chat he had with a social worker on a good day on hospital without me, is so woefully inadequate. Apparently he might need some reminders to carry out activities of daily living and that's about it. One thing was very clear: we (me, my OH, and our school age children) are pretty much on our own in this.

On diagnosis it was described to me as being a cross between Parkinson's and Alzheimers. To that I would add a third: schizophrenia. It seems to me that because that third strand makes people uncomfortable, it's simply ignored.
i can sympathise with your on going problems. my partner is the same. when we are in company he presents as nearly normal and relatives and friends and i might add his memory hub nurse who all think he is doing well no matter how difficalt he can be when they are gone. The specialists so called have not given me any real help although he does go to a group now 2 days a week. which is a great help but also its harder to manage him when hes at home. sorry to be such a moany minnie but thats how i feel. i hope you get what you need, especially as the diagnosis with dementia with parkinsons and leweys seems to be beyond most peoples understanding .


Registered User
Jul 21, 2018
I absolutely agree with you, taylor01207. We saw the consultant Friday, who said, of all his patients, he’d prefer to be like my husband. Of course he did well on the cognitive test - It was short. People just don’t realise what it’s really like. At least he’s going to put physio and speech therapy in place. My husband told him he walks for one and a half hours! In his dreams!