Meg’s story (part three): ‘My husband’s life is in strangers’ hands’

In the third and final part of her story, Meg Wilkes explains the impact of her husband Keith’s move into residential care, following his diagnosis of dementia with Lewy bodies.

Read part one and part two of this series for more of Meg’s experiences caring for her husband with Lewy Body Dementia.

Meg visits Keith in his room at the care homeMeg 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.

Our helpline advisers are here for you.

Next steps

Please note: This blog is taken from a chapter that she wrote 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. A portion of the chapter is reproduced here with the kind permission of Meg and the publisher, Taylor & Francis.

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My husband has LBD and this is the first time I have read about it on talking point. I feel so overwhelmed because he does not seem to 'fit' the perception of how people view dementia. It is a complex disease and so hard to explain to someone even if you wanted to . I am beyond heartbroken and exhausted.

Frances,
I have only just read your comment, and want to say how very sorry I am that your husband has LDB and all that that means for you.

Like you, I found it so hard to explain to other people about the effects of the disease when my husband had DLB and that added a feeling of being alone to my heartbreak and exhaustion.
I hope that you can find real help and support. It may need spelling out clearly because kind people don't always understand what you really need, as you know, but they do want to help. I've felt close to you as I've been writing, knowing something of the difficulties you are living with. I do understand and I wish you well.

My blog came about because I said to a friend that it seems that most people believe that dementia = Alzheimers = memory loss, full stop. She admitted that she knew no better, and got permission from the publishers to send in my chapter. There is a lot more about DLB in the chapter itself that is on Alzheimers Soc. website and you might find it helpful to look at it. I was invited to write the chapter, a carer's view, in what is otherwise a medical textbook. There's a long way to go yet in people's understanding of being a carer.

Hello Meg, thank you for sharing such an emotional journey.
My dad has DLB and has recently gone into care.
Our family unit is fractured and I am very much on the outside but maintain my close relationship with my dad.
Can I please ask was one of your husbands symptoms insomnia? I am concerned that my dad is under the influence of too many drugs at times and it’s not consistent so he declines rapidly but then will pick up.
I would really appreciate hearing from you.
Kind regards

Hello Emma, My husband has DLB and all the things you write I have thought and said. Too may different meds, suddenly better and suddenly worse. My husband says he hasn't slept but although he gets up for the WC in the night he is in bed through his own choice from 10.30pm until 11am. The beauty for him of being at home means that he can do these asocial (sorry) things to maintain the lifestyle that makes him happy. But I edge towards exhaustion. Not there yet and do things willingly but the day will come when he needs more than I can give. So using care is an inevitability which I have to look on in a positive way. LB is inconsistent I hate it but I try and be grateful for today.

My husband was diagnosed at the age of 67 last year . Following an initial bad phase he improved for a few months . Sadly that did not last and his decline has been rapid over the last four weeks. He is more confused , isn’t sleeping , started sleep walking and losing weight. This disease is terrible and few problem truly understand it. When I tell them that he is conscious of everything that is going on, they don’t understand . I am 52 and feel that my life has been taken over . I still work but find it hard to cope . Good carers are not always easy to come by. It is an emotional journey and one of fear, frustration and incredible sadness . I cry most days because I am grieving at the loss of my husband . They call it the long goodbye and they are not wrong

Hello Sharon
We're very sorry to learn you're going through such a difficult time.
Our National Dementia Helpline advisers are available on 0300 222 11 22 if you are looking for information or support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Additionally, you may benefit from joining our online community, Dementia Talking Point, where people affected by dementia can share their experiences with others in similar situations. Find out more here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps.
-
Alzheimer's Society blog team

I so agree with the feeling that people misunderstand. If all is quiet, all is well...........My husband, a clever man, an engineer, Len has DLB., and has recently gone into a nursing home, at the age of 76. I see him sitting, the only person in the room looking at the tV which is squawking out some rubbishy programme, “Love Island” for example which he would never have seen at home ..........
I ask are you ok? He smiles, sometimes................ When I leave he doesn’t look after me, but just now and then, He is still here, He asks, are you ok? What happens next? Am I staying here?
My heart breaks .
I wish more people would speak to him, spend some time with him, give him time to perhaps express himself even if only a little. As Meg says, “ listeners”
When the carers communicate, joking cheerful, u ok Len?
Yes not so bad........... it’s just as Meg says, just surviving, because he has always been a gentleman, doing what seems the right thing, I want to bring him home, how can I leave him there? How can I care for him?
The other comment. Life is changed, I am alone here, he is alone there, this can’t be the only way
Both our hearts break

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