Meg and Keith enjoying the sunshine

Meg and Keith's experience of dementia with Lewy bodies and Parkinson's disease dementia

Adjusting to life after diagnosis is challenging for people living with dementia and their carers. Meg Wilkes explains the impact of her husband Keith’s move into residential care, following his diagnosis of dementia with Lewy bodies.

This personal account was written by Meg while Keith was in residential care. Meg gives a carer’s view of how the condition took hold and transformed their lives together.

Enjoying moments with family was so important, but many couldn’t see how ill Keith was.

In our student days, I fell in love with a lively, clever, creative, athletic, thoughtful, deeply spiritual young man with vision and great skills in communicating. He graduated from Cambridge with a science degree, before becoming a priest in the Church of England.

We married in our 20s and had two children, trying hard to combine family care with a demanding working life.

Meg and Keith with family

A life transformed

We are now in our early 70s. My husband is in a nursing home in a Special Unit for Elderly Mentally Infirm patients, living as best he can with Lewy body dementia.

He has to be fed, washed, dressed and helped from bed to wheelchair. He sits slumped, like a puppet without strings. He is doubly incontinent. He is unable to read or write or to control the radio, TV or phone.

He sleeps a lot and often keeps his eyes closed when he is awake. His hallucinations are vivid, sometimes disturbing to him, always detailed and clear. His speech is mostly incoherent and so quiet that few people can hear him.

His attention span can be measured in seconds and rarely lasts a whole sentence. He seems unable to distinguish between his dreams, his waking thoughts and what is happening around him.

My heart aches to see him like this.

Longing for affection

Meg and Keith on their wedding day

Our marriage in 1955

When I arrive he greets me briefly, often with a smile, though sometimes he doesn’t know 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.

When visitors come, he usually responds for a few minutes, especially if they have connections with his work. At other times he will resist or reject their approaches. His lifelong conversational skills can mask his lack of understanding. His habitual response, ‘yes’, means, ‘yes’, ’no’, or, more often, ‘I know that you have said something and I’m trying to fathom its meaning’.

Now and then he astonishes people with a sudden burst of energy and determination, getting up quickly and walking.

This usually ends in a fall. I have come to associate these times with talk of trains and journeys, which symbolise escape for him.

There are fleeting, infrequent times when his thoughts are clearer. He might remark on events, perhaps asking after people we know or commenting on his care. I am with him for several hours every other day, witnessing the relentless progress of the disease.

I rejoice that he has excellent care and I grieve for the husband I knew.

Learning together

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.

Dementia with Lewy Bodies is a horrible illness. Anything we can do to be more effective will be worth the effort.

We look like any normal couple of our age, but life was far from easy.

When my husband’s illness was diagnosed as atypical Parkinson’s, he was afraid that he would be written off by friends and colleagues, so we kept it a secret for a couple of years. My husband is a walk-away man, I am a talk-it-through person. What had once been a happy mix was painful exaggeration.

We were becoming strangers. We kept up our public image, but home was a cheerless place. The medication helped him physically. When he did share his news, people judged his condition by their knowledge of Parkinson’s and assumed that he was little affected, particularly as he showed none of the expected tremor.

I tried to share my worries of his dementia symptoms but it was always the same - people dismissed them with ‘explanations’, hinting that I had unreasonable expectations. I questioned my own perceptions.

Shrinking worlds

At work, colleagues’ apparent expectations put an enormous strain on Keith. It all became such an effort for him that he shrank his world to what he saw as the essentials. He tried so hard.

Keith in younger days, enjoying life and work

Keith in younger days, enjoying life and work

It was a relief when he decided to take early retirement. It would have been a bitter blow for him to have continued until he was asked to stand down.

It was a difficult and painful decision for him, as his work brought him into contact with interesting and stimulating people. It was his life, not just a job.

He was scarcely aware of his declining ability and planned to write another book in his retirement. The book was never written.

Losing touch

A few years into his illness, as well as avoiding eye contact, he told me he didn’t like me touching him. Even holding hands as we walked or accidental contact indoors was unpleasant for him. I must just watch him if he fell, not try to help him up. He told me all this in a light, matter of fact way as though it was a trifling matter.

It persisted for years except for an occasional time when he denied it all and said I must be mentally ill to say such things. There were times when I felt the need of some comfort and asked him if he would give me a hug. He couldn’t. I found it acutely painful.

To me, touching is a way of expressing love. It felt like a punishment, banishment, an over-harsh reaction to my shortcomings.

He did some potentially dangerous things - shattered a glass dish by using it on the gas cooker, turned on an electric fire too near to furniture, took my medication. I couldn’t relax for a moment.

He walked out of hospital in a snowstorm, without a coat, the day after he was sent for investigations following collapse and was missing for five hours. At home, he would set off to do something, apparently forget before he got there, forget that he had forgotten and later assure me that the job was done.

Dramatic moments

The worst example of this was his once-regular chore of keeping the rainwater drain from the roof free of debris – a tricky job he insisted on doing himself. Very soon after it was ‘done,’ we had a heavy downpour in the middle of the night. Ceilings on the top floor collapsed, the water poured down the stairwell.

As I clambered about on the flooded roof in nightie and wellies and my husband rested calmly in bed, I realised that in many ways I was now on my own. I raged to the night sky but resolved to survive. It was a dramatic moment, now a strengthening memory when things get hard.

He did remember later that he had ‘forgotten’ to do the job. I think it’s more likely that he couldn’t bring himself to admit that it was beyond him. Poor, dear, once vigorous and talented man.

My deep and shameful regret is that he shared so few of his fears with me.

Male friends have told me that he would have seen it as a matter of pride, of not wanting to worry me, wanting to go on being the supportive husband he wished to be. I shall never know.  

Meg visits Keith in his room at the care home
Meg visiting Keith at the care home, just a few weeks before his death.

A frequent response to my husband’s move to residential care was ‘you must be so relieved that he is being well cared for’. I am hugely relieved that there was a vacancy, as I could not have managed caring on my own for much longer. But relief is only part of it.

It is a profound and heart-rending change; the most difficult decision I have ever had to make. It was the end of our life together.

On the sidelines

Suddenly there is no privacy. We are lucky that he has a single room, but the staff have to come in and out with laundry, tablets, cups of tea. Their sudden arrival can feel like an intrusion. That room is our home now. No longer our ‘castle’.

My husband has lost all the comforting, familiar things that we have shared for so long. The things I like to be busy with are elsewhere. There are innumerable changes that seem to rob me of my wifehood.

My husband is in strangers’ hands. They are making decisions on his behalf and I am on the sidelines.

He has difficulty in communicating and I see him being misunderstood. His gentle politeness can give the impression that all is well. The carers in the home can’t know - they have not been with him for 48 years, as I have.

Losing closeness

Very little is said about sex and residential care. Photographs in brochures show smiling elderly people holding hands, the wooden arms of their chairs between them.

Partners who have shared their bed for over half their lifetime may or may not have been ‘having sex’ but may still crave the comfort of closeness, the feeling of their skin against their partner’s. A ‘Do Not Disturb’ notice is as difficult to use as it would be to hang a notice on the gate at home, telling all passers-by that they and their partner are having a special time together.

We have lost the possibility of a natural, comforting closeness.

It is certainly easier, though not always better, to be a carer with no emotional involvement. But this truism can spill over into another dimension, that of avoiding the expression of emotions at all costs. A passive patient sitting quietly is not necessarily a contented one; they may be just enduring. They are vulnerable and dependent. There can be fear behind their compliance.

It is tempting to dismiss patients’ bizarre utterances as meaningless, easy to make a thoughtless, patronising response. We must surely find a way to relieve their palpable frustration as they try to communicate from their confused worlds. I dream of a time when there will be skilled and unhurried listeners for them.

A whole-person disease

Dementia with Lewy bodies is a whole-person disease. It is heartening to hear of all the work being done towards understanding it and lessening its devastating effect.

Correct diagnosis is vital for the best treatment.

Carers are a rich source of immensely valuable and otherwise unobtainable information. If this is left untapped, knowledge of the patient’s state of health will be poorer, diagnosis possibly delayed and an opportunity lost to learn of the patient’s personhood. On all counts, pooling our knowledge makes good sense. It is the least we can do for those living with this horrible illness.

Meg’s husband, Keith, sadly died in 2003, aged 73.

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This blog post was originally published in 2018 in three parts. In 2021, it was combined into one post.

Meg's experience was taken from a chapter, written by Meg, for the 2005 book ‘Dementia with Lewy Bodies: and Parkinson's Disease Dementia’ edited by John O’Brien, David Ames, Ian McKeith and Edmond Chiu. It is reproduced here with the kind permission of Meg and the publisher, Taylor & Francis. 

Read Meg’s book chapter in full within our online community, Talking Point.


My dad has a diagnosis of DLB. Was discharged from hospital (in for 14 weeks) after collapsing and urine infection. My mum is his main carer. Dad has a care package arranged around the time of his hospital discharge for four weeks. Apparently reduces the waiting time when they transfer over to local authority care. Some lovely carers support in the morning and are fantastic. However the difficulty is mum is up all night with dad because he’s asking to go to the toilet or he can’t sleep. I’m staying over some nights to give mum a break. I’m so worried about her. She’s exhausted. I’m doing everything I can to support mum and dad. I honestly believe mum would benefit from respite. Do we contact dad’s current domiciliary care provider’s to help us get this support? There are also OTs involved as well. Please can you advise next steps? Many thanks Nicola

Hi Nicola,

Sorry to hear about your dad's diagnosis and your worries about your mum. It sounds like a difficult time for you all.

We'd recommend calling our Dementia Connect support line on 0333 150 3456 to speak to one of our dementia advisers. Our advisers can listen to you and give information, advice and support relevant to your situation. More details on the support line can be found here:

We also have some information on the website about respite care that you may find helpful:…

That set of pages refers to respite care in England, but we also have information specific to Wales and Northern Ireland depending on where you are based:……

I hope this is useful for now, Nicola. Please do call the support line for more information and advice.

Alzheimer's Society web team

To all who are caring for loved ones who have this terrible disease, my heart goes out to all of you. My Husband was diagnosed with Lewy Bodies Dementia on Dec 24, 2020, His 64th birthday. He is now 66 and is in a nursing home due to an attack on his caregiver. I feel so helpless, I can't care for him, work and keep my family together. I don't feel like I can talk to my siblings about him nor can I talk to his siblings or children as it is very difficult and they are all busy with their own lives. I have a therapist but I don't feel like I am being productive in any part of my life. I gave up my beloved teaching career, am working as a project coordinator and am always being reminded that I am not a mind reader, I am totally overwhelmed and can't figure out how to be successful.
Thank you for sharing your journey!

Hi Meg
My husband passed away 8months ago from Lewy Body. Not only utterly heart wrenching watching someone you love deteriorate in such a cruel way , but grieving is exacerbated by those cruel years you have lost. It really has been so hard to try to get back to those memories before dementia. Hope to others, very slow process but tiny sparks of memories starting to emerge. Its heartbreaking reading your story but reassuring too. Lewy Body is so unpredictable ,pre diagnosis you feel no one believes you and has the disease progresses those with limited contact often believe they are managing well. For present carers ,focus on the positive actions and know you don't have to be perfect. Take care.

Hi Meg

My nan (aged 89, 90 in december) was diagnosed with lewy body dimentia about 2years ago
Today we have been told she's in the last stages but I can't relate to any of the story's previously given because she hasn't lost mobility and still eating solid foods. She is prone to UTIs has hallucinations, behavioural problems and some days can't make out who's who but physically fit.
Is there a quick, drastic decline in the last stages could anybody tell me please?

Kind regards

My husband was diagnosed with Parkinsons with LBD about 5 years ago. He has all of the same symptoms as your husband. He is 80 & I’m 74. I’m still trying to take care of him at home but it’s so hard. Not sure how much longer I can manage?

Hello Cathleen,
We're very sorry to hear things are so hard to manage at the moment.
For support and guidance, please call our dementia advisers on 0333 150 3456 - they're available seven days a week. Alternatively, you can contact them via email at [email protected]. Here's some more information regarding opening hours:
Wishing you all the best, Cathleen.
Alzheimer's Society blog team

Our mum has recently passed away, at home, having suffered with dementia for well over a decade. At the end succumbing to a chest infection that did not respond to antibiotics. It is quite true a dementia patient goes full circle from a functioning healthy adult to becoming totally reliant on care givers just like a newborn. We have watched all the stages. Although she was not the same mum she was before the illness when she passed away, she was still our mum right up to the end and is missed more than she will ever know.

Subtle changes in manor
Mobility issues
Urine infections
Hospitals admissions
No longer able to perform washing and dressing tasks.
Eventually needed full assistance with eating and drinking
Unaware of danger
Language deterioration
Loss of use of legs
Having to be hoisted in and out of bed to chair/commode.
Vocabulary reduction to inaudible sounds,
No recognition or understanding of what is going on around her
Not aggressive which we felt was partially because mum was in her own surroundings and felt safe

Mum was secure at home, had regular carers and was well looked after and up until the last couple of weeks had a good appetite albeit it soft/mashable.
She had a family member living with her in the last year as a care giver, assisting the paid carers on a 24 hour basis.
Assessment for CHC took place on four occasions over a 7 year period, but on each occasion did not meet the criteria for full CHC despite health accepting that 24 hour care was required.

In the last couple of weeks of her life a CHC assessment was never mentioned, (her last one being Jan 2017) however hospice at home became involved and provided overnight cover to support family over the last week. This was a free service to which GP’s make a referral. In our mum’s last couple of weeks when it was obvious we were going to lose her as the abx were not working she was fitted with a syringe driver with drugs to keep her calm and to try and dry up her chest. By this time she as not eating much food or drinking much fluid and we were told to be careful giving food as there was the possibility of choking. We kept her mouth moist and kept her comfortable, checking pressure areas regularly. District Nurse visited each morning to check and top up medication. The GP visited twice, during this period, although did speak to family by phone .

Hospice at home is a charity to which I believe receive some funding from the NHS but most of their funding is from donations and bequeaths.

Is there a requirement on GP’s to consider CHC assessments at end of life or to leave it for hospice at home and family/private carers to provide care?

This may be something
Alzheimer’s Society may like to include on their forum re other agencies that can become involved at end of life care at home. Hospice at Home are not just for cancer patients as I thought .

Anna in my opinion the GP should make the first referral for CHC Assessment but perhaps are persuaded not to in order to conserve NHS Funds? Not something I expect anyone to admit to of course as this would demonstrate a lack of care.
I made a direct request to our GP to get my Wife Pauline Assessed which was initially done by a Social Worker. Due to the complexity a Supervisor made the next Assessment. On the third Assessment it was done by a "Complex Case" person on behalf of the local CHC department.
Further details are on my website
Unfortunately pressure is necessary at every point of contact in our NHS.

Best wishes. Peter Garside

Megs story is very relevant. My husband has been in care for nearly 3 years, I'm not sure he really recognises me. I do his nails and apply hand cream at most visits (a form of contact). Usually visit every other day - but he seems happy enough whether I'm there or not. Not sure he recognises me 'as me' just 'someone' who says hello and spends time with him. He has Lewy Bodies - doesn't recognise the children - occasionally glares at them if several visit together, He can't speak /converse / hear - finds swallowing difficult / dribbles / nose drips / coughs / doubly incontinent / walks - shuffles with a walker, where is the man I've known for 53 years who had a ready wit / cycled miles during his youth and retirement. This is a very cruel illness for him and for his family.

Very sad for both Meg and her husband. I have experience myself of the utterly destructive effects of Alzheimer's disease as my dear mother Renee was diagnosed in 2006 and died aged 92 in2014. But we lost her long before her physical death, and it was very painful to witness her fast decline from a bright, capable, sociable woman, whose husband was the light of her life, to an inert shell in a bed, totally unable to do anything for herself or even speak. Ghastly, vicious disease. Even now, I find it very hard to think of her, it has obscured or coloured my memories so much.

Greetings from Ciudad Ojeda, Venezuela! My name is Adrian Piña, I am taking care of my 63-year-old mother who was diagnosed with Alzheimer's in 2010, I am writing to you with the hope of carrying out a fundraiser in honor of my mother because her health has deteriorated in the last months due to the political problems of this country (I do not want to enter in details because it is not relevant at this time) for which the medicines for their treatment have become too expensive and difficult to obtain, I create a fundraising campaign at with which I would donate 70% and 30% that could help me get the treatment and give my mother a better quality of life ... If you want donate here is the link

Thank you Meg & your publishers for giving permission for your story to be told to the wide readership of these blogs. My own experience & blog earlier this year led to a huge response visiting my website designed both as a Memorial to my late Wife Pauline, & to help people obtain their right to NHS Continuing Healthcare benefits. Dementia & Alzheimer's Disease in particular, is accepted as a "Primary Health Need". If sufficiently complex you can obtain a "Personal Budget" to cover all the costs of Care both at Home, or in a Nursing Home if required. The benefit is not means tested, unlike Social Care via a Local Authority.
My late Wife Pauline sadly died from an unrelated condition, but with time on my hands after a decade as her main carer I felt moved to tell as many people as possible how we managed to get the essential help needed for the best care possible. This we achieved & Pauline's last few months had good quality daily from the excellent professional Carers who called at our Home. Our situation was less complex than Meg's experience, but had time made life more difficult then NHS would have covered the extra commitments as required.
Unfortunately many people have great difficulty obtaining NHS Continuing Healthcare due to the complex Assessment requirements. However if you are well prepared this could make the difference between just coping & not coping at all. Further details are on my website
Best wishes. Peter Garside