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

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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? 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. Wendy of course raises the topic of assisted death and its unavailability as an option in the UK presently. Furthermore she also explores the impact of dementia on the decision making process involved in assisted death. Having dementia puts an added barrier in the way as it becomes questionable as to whether that person has the ability to make the decision to end their life. Wendy takes this discussion to another level arguing the right to make the decision to end her life before she “goes over the edge”. The right to die as your “preferred self” could apply to anyone with a terminal or life changing disease or illness. I have this struggle every time I look at what is left of my own mother who is in end stages Parkinsons. This is not how she would like to end her days. This beautiful book will give hope and courage to many people. An uplifting and courageous read' - Kathryn Mannix

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. 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. 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. This beautiful book will give hope and courage to many people. An uplifting and courageous read' KATHRYN MANNIX Since she was diagnosed with dementia in 2014, Wendy Mitchell has written three books. She has also been skydiving, been wing walking and walked the Infinity Bridge. Living with dementia, Wendy doesn’t fear much anymore. This is Wendy’s third book. In the first two, she wrote of living with dementia while in this book, while she still can, Wendy writes of dying with dementia. Wendy raises some difficult questions in this book and reminds us that we are all going to die. How much agency do we want? Especially in cases where living with a progressive terminal illness?I had to take time reading this one Wendy, it’s a challenging time at the moment and there was much to think about and digest along the way. Thank you for being such an inspiration to so many, for not being defined by your diagnosis but finding a way beyond it and giving support to so many others. You are so right Well it felt like the natural way forward… what better subject to choose for my final book than planning for the future, assisted dying and death? You can’t get more final! Throughout writing this book I’ve realised that death is treated like dementia - it’s a taboo subject for many, but it doesn’t make any sense to me. The one thing that is guaranteed to happen to 100% of the world’s population is given so little value. What other thing affects the entire world’s population? 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.

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. 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.” To have no autonomy, no independence, to be totally reliant on others for when and where and how I do things, is not the life today’s Wendy wants for future Wendy.’ 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.

We talk so often about prolonging life, but we are actually prolonging death by not discussing the suffering part of it.’ The sky’s the limit: Wendy Mitchell walking the 1,000ft highwire Infinity Bridge in Cumbria – ‘The hardest thing I’ve ever done.’ 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: 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.

In this her third book, Wendy raises and faces difficult questions, possibilities, choices and present day options for self control for end of life head on. She takes on the views and perspectives of medical staff, Carers and politicians and challenges the unfairness of being denied the choice of when and how to end your life. Wendy also offers her own experience of end of life directives and how to maintain some control over end of days.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? 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.