"Dementia Didn't Play The Winning Card – I Did"

My friend Wendy Mitchell's poignant last blog post...

What do you do when you have no words? That’s how I feel at the moment.

You may have seen in the news that yesterday my friend, Wendy Mitchell, died. Wendy and I wrote three books together, Somebody I Used To Know, What I Wish People Knew About Dementia, and One Last Thing: How To Live With The End in Mind – which is out next week in paperback.

Except Wendy won’t see that publication date because she chose to end her life by VSED (that’s voluntary stopping eating and drinking) this week.

I knew it was coming, but it’s still impossibly hard, and so I can’t imagine what it’s like for her two daughters.

I spoke to the BBC Radio Four’s Today programme this morning, and I’ve just recorded another TV interview, and I tried desperately hard not to cry in both (I failed in the second).

But while I try to find the words to describe my wonderful friend, I would like to leave you with her poignant final words… and some lovely pictures of us.

My Final Hug-in-a-Mug

By Wendy Mitchell

Dear everyone who has followed my story and anyone else who cares to read this…

If you’re reading this, it means this has probably been posted by my daughters as I’ve sadly died. Sorry to break the news to you this way, but if I hadn’t, my inbox would eventually have been full of emails asking if I’m OK, which would have been hard for my daughters to answer… In the end I died simply by deciding not to eat or drink any more. The last cuppa tea…my final hug in a mug, the hardest thing to let go of, much harder than the food I never craved…This wasn’t decided on a whim of self pity as you’ll discover by reading on.

Dementia is a cruel disease that plays tricks on your very existence. I’ve always been a glass half full person, trying to turn the negatives of life around and creating positives, because that’s how I cope. Well I suppose dementia was the ultimate challenge. Yes, dementia is a bummer, but oh what a life I’ve had playing games with this adversary of mine to try and stay one step ahead. 

I’ve been resilient throughout my life, even from a young child, so resilience is inbuilt in me to cope with whatever life throws my way.

Who would have thought, when diagnosed all those years ago, that my life would turn out quite as it did? I’ve always liked to have a plan, something that makes me feel in control of dementia. I ‘planned’ for the future by completing my LPA’s and ReSPect form, and sorted my advanced care plan in minute detail with my wonderful GP. 

Sadly assisted dying isn’t an option in this country. With something that will affect 100% of the population, regardless of wealth, intelligence or ethnicity, it’s amazing how such little value is placed on the act of dying. For those that have read my book, One Last Thing, you will understand why I feel so strongly about assisted dying. The only legal choice we shouldn’t have in life is when to be born; for everything else, we, as humans, should have a choice; a choice of how we live and a choice of how we die.

Facts and figures show how, in those countries where assisted dying is legal, people live longer. Having that ‘magic potion’ within touching distance enables them to choose life for much longer. In countries where it’s illegal, such as the UK, people have to die sooner than they might otherwise choose. Like me, they have to have the capacity to make such a decision if death isn’t to be a lonely and often violent act.

My first book was kept on some people’s bookshelves for a year, or even two, because they were afraid to open it and read what’s inside. But when they did they found nothing of the fear they were expecting and instead found dementia unravelled. I want the same to happen with my last book, One Last Thing – How to live with the end in mind. Some people will be afraid to open it, yet, when they do, they’ll question their own reluctance to talk about the one thing that will affect us all.

To feel I had some control over the future makes the business of living so much easier. To talk about death makes it easier to concentrate on living.

To have an option within your grasp enables you to relax and live life. In America, for example, some people are eligible for assisted dying. But when they receive the magic potion that would take them from this life, having it enables them to feel in control, and many choose life instead of death for much longer.

So, what has all this to do with my death?  If assisted dying was available in this country, I would have chosen it in a heartbeat, but it isn’t. I didn’t want dementia to take me into the later stages; that stage where I’m reliant on others for my daily needs; others deciding for me when I shower or maybe insisting I had a bath, which I hate; or when and what I eat and drink. Or what they believe to be ‘entertainment’. Yes, I may be happy but that’s irrelevant. The Wendy that was didn’t want to be the Wendy dementia will dictate for me. I wouldn’t want my daughters to see the Wendy I’d become either.

Through writing my last book, I spoke to many amazing people, both in favour of assisted dying, against it, but also those in palliative care. Many of those specialists believe we should concentrate on providing gold standard palliative care. But in my humble opinion, it shouldn’t be a case of one OR the other. The choice should be ours to make. Yes, of course gold standard palliative care should be available for all, but so should the choice of assisted dying. Even the most wonderful palliative care imaginable could not stem the incoming tide of dementia. It was up to me to do that. 

The incredible inventors within our great NHS have enabled advancements in treatments not even imaginable some twenty or thirty years ago, but, they will never discover a treatment to prevent the inevitability of death. While all these advancements have been taking place, successive governments have ignored the growing ageing population; have allowed, through lack of investment, our greatest gift, the NHS, to crumble before our eyes. To die later surely means to need more medical intervention. Everyone but our governments have seen this happening. Dying has been ignored, swept under the proverbial carpet. The choice of assisted dying could be the answer to so many people who actually don’t want to exist when medicine can keep them alive. Those who succumb to illness may not want to have their life prolonged, simply because it’s possible. Or maybe some people would just like to call time on their life because, in their mind, they’ve had a good life and now is the time to end before the tide of good fortune turns.

In the end, I wanted to choose the one option I said in my first book I would never choose – Dignitas, in Switzerland. After looking at every option and eventuality, this was the only place that would give me a dignified death. I’ve no fear of flying on my own now, as I would never ask my daughters or anyone else to fly with me, because of the complexities of the law when they flew back. But it also means my daughters can’t be there with me, holding my hands in my final moments. 

I was hoping to go there at the beginning of the year. However, my plans were turned upside down when I had my fall, breaking both my wrists and revealing damage to my neck and spine. I would no longer be confident to travel alone to Switzerland.

I’ve said for a long time that I don’t want to be an inpatient in a hospital, or a resident in a Care Home. It’s the wrong place for me; the loss of routine, familiar surroundings and people. For some they may believe it’s the right place, or they have no option.  I’m NOT saying it’s wrong for everyone, I’m saying it’s wrong for me. You may say, ‘but my mum’s in the late stages and she’s very happy in her care home’. I’m really pleased she is, truly, I am. It’s just not the place I want to end my years.

Many people focus on moments of happiness. Someone I interviewed was very adamant someone in the late stages of dementia was happy because he played the piano and made other residents happy… but my argument was, what about the other 23 hours of his day? Are they spent in confusion, of wondering why he’s there? Does he like being totally reliant on others? Would his former self have chosen this ending to his life? These questions can never be answered, of course, but I’ve taken the decision to answer them for me now, while I’m able.

I’ve always given people hope, or I like to think so. Have I stopped giving people hope by choosing the death I’ve chosen. Or have I given people hope, that IF they wish, they too can have hope for an existence of their choosing, or a death of their choice?

My life was for living, but now it’s time for dying. So, if you want to do something for me, please campaign for assisted dying to be law here. 

Adapting to this life with dementia is over, but I don’t consider dementia has won, as that would be negative and you all know I’m a positive person. It’s ME calling time on MY dementia – checkmate, before IT plays its final move. As the video below shows, that was created for my first book… I was determined I wouldn’t forget, and by doing this now, I haven’t. Yes, I’ve had to die before my time, but I had to make sure I had capacity and hadn’t allowed dementia to creep in overnight and take that capacity away from me.

In the end, after my accident, the only choice open to me was to stop eating and drinking.

I learnt about Voluntary Stopping Eating and Drinking (VSED) as my way out of this world during the writing of my book. I spoke at length with my daughters and I spoke at length with my GP over the last few months, always including her in conversations with my daughters, to give that ‘expert’ information to questions I could never have answered.

I don’t feel hunger or thirst, meaning that part of the process would be less stressful for me than for others. 

After my fall downstairs at home, my lovely friend Philly came to stay with me to help support my daughters and me. It was during this time, and after many conversations with my girls and Philly, that I decided this was my time to end this cruel life dementia had thrust upon me. I wasn’t depressed, I wasn’t forced or cajoled in any way whatsoever, it was solely down to my choice. I was ready.

You may or may not agree with what I’ve done, how and when I’ve chosen to leave this world, but the decision was totally mine.

My girls have always been the two most important people in my life. I didn’t take this decision lightly, without countless conversations. They were the hardest conversations I’ve ever had to put them through. Some people may be angry at what I’ve done and that’s their prerogative – but don’t take that anger out on anyone other than me. This was all MY CHOICE, my decision. So please respect my daughters’ privacy, as they didn’t choose the life I chose, of standing up to and speaking out against dementia. 

Thank you to all those who have supported me along the way…your support was invaluable.

So, enjoy this video knowing that dementia didn’t play the winning card – I did.

Photo of me back in a time when dementia wasn’t even a word that existed in my vocabulary….