Writer facing dementia says society puts priority on preserving life, not on quality of life

Jun 25, 2023 | 1 comment

By Kat Lister

The late May sun is streaming through Wendy Mitchell’s conservatory windows as she sits in her armchair and gazes out on to her garden in bloom. Spring is finally yielding to summer and in this small corner of east Yorkshire and the fading forget-me-nots and primroses are giving way to the vivid blush of ruby geraniums.

“I love bright colours,” says the former NHS administrator with the widest of smiles, her bright eyes flitting from left to right, pausing every so often to name what she sees: the slender-stemmed purple alliums “standing to attention” in front of the hedge; the multicoloured Sweet Williams scattered around in baskets and pots. “I adore my geraniums because they’re so vibrant,” she tells me, “and they don’t need a lot of water, so I don’t need to remember to water them!”

Wendy Mitchell: ‘I still remember those dark clouds, that hopelessness.’ (Photograph: Alex Telfer)

Like so many things in Mitchell’s life, gardening – a pastime she’s always taken great pride in – has shape-shifted into a more complex endeavour since her diagnosis, in July 2014, of young-onset vascular dementia and Alzheimer’s disease: a degeneration of the brain that currently affects more than 70,000 people in the UK. She was 58 years old.

At the time, life was teeming and busy. She had a demanding job working as a rota manager for the NHS. She was raising two daughters as a single mother. She was also a keen runner, which is where her condition first came to light, when she lurched on to the steel decking of York’s Millennium Bridge as her pounding feet gave way to the thud of her body on a morning sprint.

Today, a simple task, like remembering to water the flowers that she loves, requires foresight and canniness. The same goes for remembering to drink and eat: she has sound alerts saved on her phone to prompt her. Over the past nine years, much has changed, yet one thing has remained doggedly in place: a determination to live in the now – while also planning for a future that’s been cruelly accelerated. It hasn’t been easy for Mitchell, now 67, to get here, nor has the path been a linear one.

“I still remember those dark clouds, that hopelessness,” Mitchell writes of her diagnosis in her forthcoming book, One Last Thing: How to Live with the End in Mind – a book that aims to open up our conversations surrounding death and end-of-life care. This new writing is very different from her previous two published works, Mitchell tells me, not only in its urgency (“I don’t know if I’ll be able to speak in a year”), but in the universal message it has to deliver. Following on from 2018’s deeply personal memoir Somebody I Used to Know (a poignant account of life with young-onset dementia) and 2022’s What I Wish People Knew About Dementia (a candid guide for anyone affected by such a life-altering diagnosis), Mitchell’s third and “final” book is all about how to make her death more comfortable for those she’ll leave behind.

Wendy Mitchell during a recent skydive.

“Just as you’ve trusted me to talk to you about dementia, trust me to talk to you about death,” Mitchell asks of us. The result is a multitudinous treatise on a topic so many of us are fearful to acknowledge – let alone talk about. “To better get on with the business of living… we need to talk about death,” she writes. The result is both tender and persuasive. Her words permeate and linger. Mitchell’s personal story is sensitively woven with exchanges with friends, family and experts – including retired palliative care doctor Kathryn Mannix, and the Labour MP Paul Blomfield, whose speech on assisted dying in the House of Commons in 2019, following his father’s suicide, made headline news.

Since publishing her first memoir, it is this sense of altruism that has characterised Mitchell’s writing and advocacy – an outstretched act of generosity that has seen her, with the help of her co-writer Anna Wharton, tackle the truisms and misconceptions of a degenerative condition that is still so wildly misunderstood. “Living with dementia, nine years on, the clouds descend more frequently now,” Mitchell writes of her neurocognitive symptoms in the opening pages of the book. And yet: “What keeps me going during those foggy days is hope.” This morning, for instance, she is showing me a selection of photographs she took recently with her lockdown purchase: a Nikon 950.

She walks for miles every morning with this camera, usually at dawn, looking for what she calls “the magic moments” in each new day. Just a few hours before my arrival, for example, she said hello to her favourite hares leaping and hopping in a nearby field. She beams as she recalls them. Being outside in nature is “an escape from dementia”, she says. “It may sound strange, but it feels like it’s diluting it when I’m out in the open. Because when you’re inside, you’re closed in, and it feels like dementia is immediately surrounding you.”

“What I want this book to do is open up everyone’s mind on the importance of talking,” Mitchell explains as we discuss the many discourses in her book, each one centering on death, dying and living well – however long you might have left. In a country where two-thirds of UK adults haven’t written a will, Mitchell is intent on probing all angles of death: how we can prepare for it, how we should talk about it with our loved ones and why making our own choices – about how and when we die – should be a right, not a crime. Rather than make her feel vulnerable, these conversations have only strengthened her. “It could even be as simple as: cremation or burial? I’ve realised since writing, many people don’t even know that about the closest person to them, because they’re uncomfortable having that conversation.”

Whether it’s discussing end-of-life care or exploring the taboo subjects of refusing treatment and assisted dying, if there’s one unifying theme, it is autonomy. “I’m not asking for everyone to agree with me, I simply want to have a choice,” Mitchell says as we discuss the topic she’s most passionate about: assisted dying in the UK. Right now, she contends, that choice is light years away from her. As it stands, assisted suicide is illegal under the terms of the Suicide Act (1961) and is punishable by up to 14 years’ imprisonment. She circles back to the word “choice”. “It is at the centre of everything we do as humans every day – or at least those of us lucky enough to enjoy the choice of bodily autonomy and who are not bound by regimes or other strict diktats,” Mitchell writes. “And yet, we have no choice over when we die, or at least we don’t in the country I live in.”

Wendy Mitchell walking the 1,000ft highwire Infinity Bridge in Cumbria – ‘The hardest thing I’ve ever done.’

Preservation of life, Mitchell argues, has superseded any conversations surrounding its quality – and how to enable people to “die well”. Why, she asks. Again, she reiterates the dangers in our knowledge gap. “It’s so ridiculous that hospices only get 30% of their income from the government. It’s a shocking statistic that people need to know. They need to know that people are kept afloat by people knitting jumpers and selling cakes.” She pauses. “That’s the value we place on death.”

Talking about the future enables us to live in the now, Mitchell argues. It eradicates the “what ifs”. At the heart of Mitchell’s third book are her two daughters: “the most important people in my life”. None of these conversations have been easy to have with them, she readily admits. That said, what would be the alternative? “Imagine the distress I could cause if I could no longer speak and could only watch things happening. Imagine the sadness of them falling out and not being able to reconcile. Imagine the trauma I would have caused for them both in my death if we haven’t talked.”

At one point in One Last Thing, Mitchell describes such conversations as a reciprocal act of love. “Our relationship has changed big time,” she says quietly. “I’ve changed big time.” Her daughters now call her “the gregarious alien”, a moniker that makes her chuckle when she remembers the woman she was pre-diagnosis, in what she calls her “other life”.

Previously quiet and introverted, “now I’ll talk to anyone,” she laughs. I’m hesitant to call her dementia a liberating force, I tell Mitchell, but there is a surprising lightness and dynamism whenever she speaks. Liberation is the right word, Mitchell answers, because there is freedom in the ever-diminishing responsibility.

“I’m not saying that’s a good thing, because it disappears to an extreme where people think we’re not capable any more.” The reality is a lot more nuanced. Pre-diagnosis, “everything had to be just right”. These days, “I’ve learned that ‘just right’ doesn’t exist with dementia.” Take her garden lawn, for instance. It might surprise some to learn that she still trims it herself with a cordless mower she bought “because I was forever electrocuting myself”, she chuckles. “They’re my lines,” she says emphatically as she looks out across her wavy lawn.

It doesn’t take a poet laureate to realise that these mismatched stripes of grass are a powerful metaphor in Mitchell’s increasingly foggy world. “If you accept that the lines won’t be straight then it relaxes the effort of doing things,” she says. “It doesn’t matter any more. It doesn’t matter if they’re wiggly.” Perhaps this has been Mitchell’s biggest mission since she was diagnosed nine years ago: to show us all what she – and the more than 850,000 people who also have dementia in the UK – can do in spite of the odds.

Before Mitchell was diagnosed, she was afraid of so much. “Now, when I lie in the dark, there isn’t any worry whatsoever. And that’s because I think, ‘Crikey, if I can face dementia, why should I worry about anything else?’” If the last nine years have taught her anything, it’s the importance of time and how not to take it for granted. “The only certainty we have in life is this moment. No one knows what’s round the corner. People always say, when I retire I’ll do this, or next year I’ll do that. And I say to them, ‘Why not now?’ Because, if it’s that important, don’t wait for the future, because it might not come.”

If anything, Mitchell has turned into a bit of a daredevil as her condition has intensified. Last year, she went wing walking. A month ago, she walked the Infinity Bridge, a highwire suspended 1,000ft above sea level, strung across the Honister Slate Mine in Cumbria. “It was the hardest thing I’ve ever done,” she says proudly and with a smile. Later this year, she’s set to abseil down London’s 225m-tall “Cheesegrater” Leadenhall Building.

Dementia wants you to shut your eyes, it wants you to sit, it wants you to empty your head, Mitchell says. “That’s its cruel way of telling you doing nothing is good when, actually, this is doing me good.” Looking around her light-filled conservatory – at the crimson alstroemeria, her favourite cut flower, blooming in its pot, and her well-thumbed copy of Garden Birds, a nature guide in easy reach on the coffee table – it would be easy to omit the duo of mobility walkers stacked neatly in the corner. Ditto the trio of retro tin signs on her wall that advertise popular food products – Bisto and Marmite – that, due to her intensifying impairment, she can no longer taste. And yet these appendages tell us so much about the willpower of a woman whose dawn instinct, even now, is to grab her camera and walk in the open fields.

“I haven’t quite managed it now the clocks have changed, but I used to go out to see the sun rise. I love that time of day, it’s when I see so much.” A couple of days ago, she encountered a towering tree in the morning mist, a photo- graphic opportunity that, a few minutes later, would have passed. She loves to watch birds sing, too, she tells me – occasions that she calls her moments of connection. “Those tiny moments that disappear if you don’t look at them; it’s those moments,” Mitchell repeats. Sometimes they don’t work. And she deletes far more pictures than she keeps. “But have patience,” she says with a smile, “because you know they’re going to sing.”
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Credit: The Guardian

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