The unending grief of the dementia carer

Radio 4 logoJust as I was about to post this week’s blog I set it aside in favour of another.   I did so because of a remarkable interview on Radio 4 between John Humphrys, the Today programme’s resident Rottweiler, and Denise Stevens, who cares for her husband Mike, who has dementia.

It’s only a few months since I devoted a blog to another Humphrys’ interview in which two people with dementia, and their spouses (and  carers) were given the prime-time 8.10am slot to explain what it was really like to live with the condition.   I described this as a significant step towards normalising dementia.

So I hesitated before inflicting John Humphrys, Radio 4 and the Today programme on anyone yet again – it hardly seems fair.  But it was such an insightful, moving piece that I felt compelled to do so, particularly as it has just been revealed that those with dementia and their unpaid family carers shoulder two-thirds of the staggering £26 billion that the condition costs this country every year.

The interview came at the end of a week when each day a different presenter explored the NHS from a personal perspective.  Humphrys began his piece by recollecting his own father’s dementia and the way, towards the end, he had “turned his face to the wall” and died.

This revelation set the tone for an item that had the feel of a conversation between two individuals who shared the experience of having a close relative with dementia, on which we listeners (all 7 million of us) were eavesdropping.

It reinforced yet again – if anyone still doubts it – that those best placed to spread the word about, to increase understanding and awareness of, and to reduce the stigma surrounding dementia are those who have it and their carers.  By definition, a rapidly growing number of us.

In Denise, the Today programme had found an unusually thoughtful and open woman whose frequent pauses spoke volumes and must surely have resonated with anyone who has brushed, however lightly, with the condition.

She began by painting a picture of Mike, diagnosed 11 years ago when he was just 52, as an optimistic man able to deal with anything as long as he was happy in the now, and who wasn’t afraid to tell others that he had dementia.

Humphrys listened, waited and paused before asking Denise how she coped with her husband’s illness.   There was a resignation in his normally brusque Welsh voice, a hint of the understanding that was to come and, for me, the quick realisation that this interview, unlike the last, was to centre on the carer.

Denise showed no self-pity as she explained how she is adapting to changing circumstances as best she can.  Her voice betrayed a hint of the emotion which, though never far from the surface, she was able to contain.

Sitting in my kitchen, toast midway to my lips, I listened to a woman in the process of great change, wrestling with it and its many challenges, and just about managing to maintain her poise.  I recognised that woman.

It was several years ago now and I only took on a small fraction of what Denise is having to cope with.  My relative was my mum, not my husband, and I didn’t live with her so it was much, much easier.  But I know what it is to ride the roller-coaster of those turbulent, near-impossible times, and I’ve written about it here.

Denise is unusual though.  She is someone who, even as she’s in the midst of the chaos of transformation and loss, seems able to analyse and articulate it.

Introducing her, Humphrys said that of all the voices he had heard on the subject of dementia, hers was the most compelling.  He declared that her experience gave her a moral authority and as they talked his tone conveyed a rare respect for her.

One of the most affecting passages was when Denise described losing Mike little by little, without the completeness or solace of grief – an experience which anyone with a loved one with dementia will recognise only too well.

“There is a stone inside you that makes you feel that this isn’t a life.  You are getting through from one day to another but you are still able to see him, to touch him and communicate. But every stage is so painful, so painful – when you lose part of something that he is no longer able to do, which could be feeding himself or dressing himself – and as these stages progress, you just get such a sadness, such a weight inside, and that just gets bigger and bigger, so it is a constant grief”.

Later, when Humphrys asked her perhaps his most challenging question – what happens when the positive is overwhelmed by the negative and Mike might not want to live – he revealed that this was what his own father had wanted.  Denise struggled to answer, admitting that if she were in her husband’s shoes she wouldn’t want to live but also that she couldn’t do anything to help him to do this were it his wish.

It was a moment of raw truth in an extraordinary radio broadcast that laid bare the carer’s lot in all its emotional complexity.  I’d urge everyone to spare 10 minutes from their busy day and listen to it.

2 Responses to The unending grief of the dementia carer

  1. Jess Ball 2nd July 2015 at 5:02 pm #

    This was a very interesting read and interview, Pippa. Also very touching to read your story about having a mum living with dementia.
    The struggles of so many informal carers go unnoticed when dealing with a loved one’s dementia. This ‘invisible army’ of carers deserves so much respect and support.
    Thank you for sharing!

    • Pippa Kelly 2nd July 2015 at 5:53 pm #

      Thanks Jess. You’re so right about the invisible army of carers.

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