One Last Thing: How to live with the end in mind

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One Last Thing: How to live with the end in mind

One Last Thing: How to live with the end in mind

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In talking about these issues, which are uncomfortable for many of us, Wendy challenges the unfairness of being denied choice. Wendy’s concern is for her own future: 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.”

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. 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.

About the contributors

You have inspired and moved us all with your first book Somebody I Used to Know about your diagnosis with early onset dementia, illuminated and demystified a disease many fear, but little understand with What I Wish People Knew About Dementia. Why did you decide to write One Last Thing? The sky’s the limit: Wendy Mitchell walking the 1,000ft highwire Infinity Bridge in Cumbria – ‘The hardest thing I’ve ever done.’ The task of raising the topic of death and a conversation around it can be daunting to many, but without that conversation, however challenging how can we be certain our directives and wishes will be honoured? It is my belief, even more so now that some do not wish to discuss death because it forces them to confront their own mortality; or perhaps they don’t want to cause loved ones pain around something that as Wendy writes, is a 100% certainty- we are all going to die. The one that took me by surprise was a very strong opponent of assisted dying. I listened as she went through her arguments and was surprised how weak they were. But what surprised me more was the fact that she didn’t listen to me with the same courtesy I showed her. She was so convinced she was right -- that there was no argument ‘for’, even though I had one. I think her main argument was that we should ensure we get palliative care right for all, but my opinion was ignored. Of course, we should get palliative care right and accessible to all, but it shouldn’t be either get that right or fight for assisted dying laws - it should be a choice. We as humans should be entitled to a choice of good palliative care until we die or good palliative care that includes assisted dying as an option.

Wendy Mitchell doesn't fear anything anymore. After her diagnosis of young-onset dementia in 2014, all of Wendy's old fears - the dark, animals - melted away. What more was there to be afraid of when she faced her worst fear: losing her own mind? That might sound daunting and morbid, but the alternative doesn’t bear thinking about. “To have no autonomy, no independence, to be totally reliant on others for when and how I do things, is not the life today’s Wendy wants for future Wendy,” Mitchell says firmly. She adds that she doesn’t want sympathy: fair enough. But I hope, instead, she will accept the gratitude of everyone who reads this urgent, humane manifesto on how to care for and about those edging towards the finality of death.Wendy Mitchell doesn't fear anything anymore. After her diagnosis of young-onset dementia in 2014, all of Wendy's old fears - the dark, animals - melted away. What more was there to be afraid of when she faced her worst losing her own mind?

While living with her diagnosis and facing the extreme changes that come along with a progressive terminal illness, Wendy wrote two Sunday Times-bestselling books, went skydiving for the first time and supports multiple dementia advocacy groups in the UK. She is known for talking about living with dementia, but now - while she is still able to - she explores dying with it. Anyone who reads Mitchell's work can only admire her passion, her energy and her extraordinary courage' SUNDAY TIMES Ultimately this is going to continue to be a long road of political debate and not something that is likely to be available in the very near future. It raises powerful emotions from those on both sides of the argument of assisted death. While living with her diagnosis and facing the extreme changes that come along with a progressive terminal illness, Wendy wrote two Sunday Times-bestselling books, went skydiving for the first time and supports multiple dementia advocacy groups in the UK. She is known for talking about living with dementia, but now – while she is still able to – she explores dying with it.This beautiful book will give hope and courage to many people. An uplifting and courageous read' - Kathryn Mannix In One Last Thing, Wendy embarks on a journey to explore all angles of death: how we can prepare for it, how we talk about it with our loved ones and how we can be empowered to make our own choices. With conversations on the topic of assisted dying, from those who are fighting to make it legal to those vehemently opposed to its practice, Wendy reminds us that to get on with the business of living, we need to talk about death. Mitchell sets her own stall out early: if it were possible, she would elect for “the kindness and release” of assisted dying. As this is not yet legal in Britain, she consults charities including Dementia UK and Compassion in Dying, and Baroness Finlay, crossbench peer and professor of palliative medicine. She speaks to doctors and nurses and lawyers to find out what measures she can take to retain some kind of agency as the end nears. Much of it is predicated on difficult conversations with loved ones and documenting wishes for almost every eventuality. You have interviewed and met such a wide range of people for this book. What was the conversation that most took you by surprise or the most enlightening?

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. Cancer would have afforded her the opportunity to reject treatment, embrace palliative care and slip away before dementia robbed her of herself. But Mitchell eschews self-pity in favour of investigating what her own end might look like, were she able to choose it. What follows is a veritable vade mecum that I, for one, will keep and re-read in the years to come. I’d be fibbing if I claimed to grasp the difference between an advance directive, a future care plan and a recommended summary plan for emergency care and treatment, otherwise known as a ReSPECT form. But there’s comfort to be had in now knowing what I don’t know – and should get to grips with before it’s too late. Don’t be put off that this is a morbid read, it’s a difficult topic, but it places emphasis on living in the moment. I have long been an advocate of mindfulness, more so now as the years fly by. Wendy emphasises the importance of not becoming so focussed on death that we miss out on living. There is something uniquely disquieting about opening what’s billed as “the final book” of an author who, although alive, is preparing for imminent death. One Last Thing by Wendy Mitchell is just such a book. I say “imminent”, but only in the sense that as Mitchell recounts her rapid physical and intellectual declinem due to young-onset vascular dementia and Alzheimer’s disease, she knows that time, her time, is running out. This clear-eyed call to arms makes it evident that Mitchell will do her damnedest to die on her own terms.We talk so often about prolonging life, but we are actually prolonging death by not discussing the suffering part of it.’ A hospital is the worst place for someone with dementia: our routine is gone, our familiar surroundings disappear and are replaced with a new and totally alien environment full of noise and people we don’t know.’ As I read this book, I am reminded of the conversations we each need to have (and some of us avoid) about choices. Yes, many of us have wills and make provisions for funeral arrangements and for dependents, some of us have advance care directives (or are thinking about it). Those of us avoiding these issues and discussions assume that we will have time and will have the ability to make such decisions. But ability to make such decisions cannot be taken for granted: a brain injury, mental incapacity or advanced dementia might intervene.



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