Meg’s story (part one): ‘My heart aches to see him like this’

Meg Wilkes' husband Keith sadly died after 14 years living with dementia with Lewy bodies. Read how the condition transformed their lives together.

In this three-part blog series written while Keith was in residential care, Meg gives a carer’s view of how the condition took hold and transformed their lives together.

Meg and Keith with family

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.

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.

Next steps

-- Please note: This blog is 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.

6 comments

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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 https://continuinghealthcare.wordpress.com/
Best wishes. Peter Garside

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 fundrazr.com 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 http://fnd.us/f1MZS9?ref=sh_b7Kd63

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.

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.

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.

Changes
Subtle changes in manor
Confusion
Wandering
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 https://continuinghealthcare.wordpress.com/
Unfortunately pressure is necessary at every point of contact in our NHS.

Best wishes. Peter Garside

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