Author who shared dementia battle on blog leaves final message announcing her own death

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

If you’re reading this, it means my daughters probably posted this because I unfortunately died. I’m sorry to break the news to you this way, but if I hadn’t, my inbox would have ended up full of emails asking if I was okay, which my daughters would have had a hard time answering… In the end, I just died deciding that no more he does not eat or drink.

The last cup of tea…my last hug in a cup, the hardest thing to let go of, much harder than the food I didn’t crave…This was not decided on a whim of self-pity, as you’ll discover as you read on.

Dementia is a cruel disease that plays with your existence. I’ve always been a glass half full person, trying to turn the negatives of life around and create positives, because that’s how I handle myself. So I guess the dementia was the biggest challenge. Yes, dementia is a shame, but what a life I’ve had playing with this opponent of mine to try and stay one step ahead.

I have been resilient throughout my life, even from a young child, so resilience is built into me to deal with whatever life throws my way.

Who would have thought, when I was diagnosed so many years ago, that my life would turn out exactly the way it has? I’ve always liked having a plan, something that makes me feel like I’m in control of my dementia. I ‘planned’ for the future by completing my LPA and ReSPect form, and sorted my advanced care plan down to the last detail with my wonderful GP.

Unfortunately, assisted dying is not an option in this country. With something that will affect 100% of the population, regardless of wealth, intelligence or ethnicity, it’s amazing how so little value is placed on the act of dying. For those who have read my book, One Last Thing, you will understand why I feel so strongly about assisted dying.

The only legal choice we should not have in life is when we will be born; for everything else, we, as humans, should have a choice; the choice of how we will live and the choice of how we will die. Facts and figures show that in those countries where assisted dying is legal, people live longer.

Having that ‘magic potion’ at their fingertips allows them to choose life for a much longer period of time. In countries where it is illegal, like the UK, people have to die earlier than they would otherwise like. Like me, they must have the ability to make such a decision if death is not to be a lonely and often violent act.

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My first book sat on some people’s shelves for a year, even two, because they were afraid to open it and read what was inside. But when they did, they found none of the fear they expected and instead discovered that the dementia was unsolved. I want the same to happen with my latest book, One Last Thing.

Some people will be afraid to open it, but when they do, they will question their own reluctance to talk about the one thing that will affect us all.

Feeling that I have some control over the future makes the work of life much easier. Talking about death makes it easier to concentrate on life.

Having the option at your fingertips allows you to relax and live life. In America, for example, some people are entitled to assisted dying. But when given a magical potion that would take them out of this life, having it allows them to feel in control and many choose life over death for a much longer period of time.

So what does all this have to do with my death? If assisted dying was available in this country, I would choose it immediately, but it is not. I didn’t want dementia to take me to a later stage; that stage where I rely on others for my daily needs; others decide for me when to shower or maybe insist that I take a bath, which I hate; or when and what I eat and drink.

Or what they believe is ‘fun’. Yes, I may be happy, but that’s beside the point. Wendy who was didn’t want to be Wendy dementia will dictate for me. I wouldn’t want my daughters to see the Wendy I’ve become either.

In writing my latest book, I spoke to many amazing people, both for assisted dying, against it, and those in palliative care. Many of these experts believe we should focus on providing the gold standard of palliative care.

But in my humble opinion, it shouldn’t be either OR. The choice should be ours. Yes, of course the gold standard of palliative care should be available to everyone, but the choice of assisted dying should also be available.

Not even the most wonderful palliative care imaginable could stem the tide of dementia. It was up to me to do it.

The amazing inventors within our great NHS have made advances in treatments unimaginable some twenty or thirty years ago, but they will never discover a treatment that prevents the inevitability of death. While all these developments were happening, incoming governments ignored the aging population; they have allowed, through lack of investment, our greatest gift, the NHS, to collapse before our eyes.

Dying later surely means needing more medical intervention. Everyone but our governments saw this happening. Dying is ignored, swept under the proverbial carpet. Choosing assisted dying could be the answer for so many people who don’t really want to exist when medicine can keep them alive.

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Those who succumb to the disease may not want their lives extended, simply because it is possible. Or maybe some people just want to extend their lives because, in their minds, they’ve had a good life and now it’s time to end it before the tide of fortune turns.

In the end I wanted to choose one option that I said in my first book I would never choose – Dignitas, in Switzerland. After considering every option and possibility, this was the only place that would give me a dignified death.

Now I’m not afraid to fly solo, because I would never ask my daughters or anyone else to fly with me, because of the complexities of the law when they came 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 fell, breaking both wrists and revealing damage to my neck and spine. I would no longer have the confidence to travel to Switzerland alone.

I have long said that I do not want to be an inpatient in a hospital, nor a resident in a home for the elderly. It’s the wrong place for me; loss of routine, familiar surroundings and people. Some may believe it is the right place or have no choice.

I’m NOT saying it’s wrong for everyone, I’m saying it’s wrong for me. You might say, ‘but my mum is late stage and very happy in her nursing home’. I’m really glad she is, I really am. It’s just not where I want to end my years.

Many people focus on moments of happiness. Someone I interviewed was very adamant about someone in late stages of dementia being happy because he was playing the piano and making other residents happy… but my argument was, what about the other 23 hours of his day?

Are they consumed in confusion, wondering why he is there? Does he like to rely completely on others? Would his former self choose to end his life like this? Of course, these questions can never be answered, but I decided to answer them for myself now, while I can.

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

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

The adjustment to this life with dementia is over, but I don’t consider dementia to have won, because that would be negative, and you all know I’m a positive person. It’s ME time to call on MY dementia – checkmate, before IT plays its last move.

As the video below shows, it made for my first book… I was determined not to forget, and now I haven’t. Yes, I had to die before my time, but I had to make sure I had the capacity and didn’t let dementia creep in overnight and rob me of that capacity.

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

I learned about Voluntary Cessation of Eating and Drinking (VSED) as my way out of this world while writing my book. I have had long talks with my daughters and I have had long talks 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 answer.

I don’t feel hungry or thirsty, which means that part of the process would be less stressful for me than for others.

After I fell down at home, my dear friend Philly came to stay with me to help my daughters and me. At that time, and after many conversations with my girlfriends and Philly, I decided that this was my time to end this cruel life dementia had forced upon me. I was not depressed, I was not forced or persuaded in any way, everything was solely my choice. I was ready.

You can agree or disagree with what I did, how and when I decided to leave this world, but the decision was completely mine.

My girls have always been the two most important people in my life. I did not make 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 did and that’s their prerogative – but don’t take that anger out on anyone but me.

All this was MY CHOICE, my decision. That’s why I ask you to respect my daughters’ privacy, because they didn’t choose the life I chose, to stand up and speak publicly against dementia.

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

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

Categories: Optical Illusion
Source: HIS Education

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