Meg and Keith enjoying the sunshine

Meg’s story (part two): ‘I realised in many ways I was now on my own’

Adjusting to life after diagnosis is challenging for people living with dementia and their carers. Meg Wilkes explains the impact of her husband's diagnosis of dementia with Lewy bodies in this personal story.

Meg Wilkes explains how her husband’s condition affected their independence and relationships.

Read part one of Meg’s story.

'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 him. 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.

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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.  

Next steps

  • Read part one and part three of Meg's story.
  • Need support with dementia care? Talk with members in our online community, Talking Point, or contact our helpline on 0300 222 11 22

-- 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.

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10 comments

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My wife who is my carer does not treat me any different I have vascular dementia and forget to lock the door when I go for a walk ask the same question over and over will not answer the phone if I do not know the number

Peter - so glad your wife, like me with my husband, tries to understand your problems and doesn't blame you for things you cannot help. It's hard for us, but love and good humour keeps us
going.

I feel you pain, Meg . I'm carer for my friend , she was a brilliant Lawyer until ten years ago she was diagnosed with Young Onset Alzheimer's . She can no longer read, write, tell the time , has daily hallucinations , and now has severe Aphasia and is a shadow of her former self.
She gets cross with me because I can't understand her constant incoherent speech , non stop most days, all day . I'm older than her, and listening to ''non-words'' all the time is mentally exhausting .
It as taken it's toll and ,at times, you wonder how you can still keep going . It's now a one sided friendship that I can't walk away from and leave her alone .
Dementia is not restricted to the elderly, and it's not just ''forgetfulness''.............

You should qualify for NHS Continuing Healthcare to get full 24/7 care arrangements including Respite Care for yourself. Details on how to get this essential help are on my website https://continuinghealthcare.wordpress.com/

This will help you both to get quality help to manage this situation. Keep up the good work , & push hard for these benefits.

Peter Garside

Actually, Peter , I've just got CHC last week .......thanks to YOUR online advice and that of caretobedifferent !!! Spent the time needed doing my homework and ignoring all the medical advice of those telling me we had no chance ! Have only been allocated Mon.-Fri 12 - 5pm so far , but am pushing for 24/7 . It's like pulling teeth, isn't it !
I also listened to advice about keeping a detailed daily diary and submitted a full list of her symptoms ........and went for the ''complex'' needs route .
So, thank you, Peter, your experiences helped me get CHC at the first attempt , without needing to get assistance from a solicitor .

Great news Sandra & CHC will make a huge difference to your quality of life. Please tell people your story as there are thousands of people not coping who should qualify for this benefit.

Best wishes.

Peter

Hi Peter , Will do .
My sister works with a lady who's mum has been in a Care home for seven years and had already spent £90K before she was able to get CHC . She's totally dependant now . A short while ago the Home retested all of their clients and now only 9 retain CHC ? Her mum had hers removed and they are now paying again ?! That sounds ridiculous to me , and can't be legal .
I've passed on links and have suggested those families who have had their loved ones taken off of CHC to join force and challenge this .

I don't know the whole story , but I've also heard a lot of people have been having their CHC removed . You don't get better when you've got severe Alzheimer's/Dementia !

Update , Peter, We're now starting 24/7 carers coming in ...... Chris wants to stay in her own home for as long as possible , and this she can now do . A few teething problems, however, she doesn't like strangers coming into her house (who would ) and she's refusing point blank to take her meds . I still go in everyday for a couple of hours in the morning and evening as her friend , not her carer now,and to assist the carers etc . until we all get into the new routine .
But, for the first time in a lot of years I can go to my own home and sleep in my own bed ! I get some ''me'' time . What a difference that makes , and know she's being looked after .

My husband has vascular dementia, it was diagnosed about 3yrs ago, David was a teacher, thank goodness we did some travelling over thevyears, the sad thing is he can't remember many of the places, his concentration for watching TV has gone, he does enjoy his crossword, he is in and out of sleep in the day time, friends he can take them or leave them, he can no longer drive, as he can't remember where he's going, we are in our seventies, I am almost five years younger, we have children and grandchildren, who have their own lives, I love David so much, all he has ants is me, so sad😟😟

Thanks for your update Sandra. Suggest you get the Carers to supply an A4 copy of their ID photograph which can be shown to Chris before & during their visit. She may get to know their name, but will feel better & less concerned about strangers calling at her Home.
Not sure of what to do about the medication issues, but the Carers should be trained what to do in this situation. Perhaps medicine in a liquid form is better if available?
Pleased you are getting some rest now. Respite Care funding should be part of the CCG Budget for yourself as the main Carer.

Best wishes. Peter

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