A Contentious Blog on my end stage dementia – revisited

I’m almost sure this would have been a contentious blog the first time round but the subject seems to have been doing the rounds on Twitter again so I thought  I’d reblog. It all started when one organisation was questioned why they didn’t have anyone with dementia talking about end of life views at their conference. They had a Carer viewpoint but not someone living with dementia. In my opinion you can’t have a conference about OUR end of life without one of us speaking from our view point. Anyway, there response was that they didn’t think we talked about end of life. We pointed out quite vociferously that there were many of us who spoke  regularly about end of life, me being one.

They took the criticism on the chin and now the lovely Dory from Wales is speaking – better late than never I suppose, but why are we still having to highlight the omission of people with dementia at events that are about us?

My views havn’t changed and can’t see them ever doing that. So here is what I wrote back in June 2018.

I am known for talking about adapting to ‘living’ with dementia; emphasising the positives, living in the moment. However today I also want to talk about the end stages when I may not be able to talk about my feelings then, so what better time than to do it now while I’m still able. To express my views of the time when the blogging Wendy no longer exists and when dementia has won it’s cruel game of hide and seek.

This is in response to the article by Polly Toynbee in the Guardian last week:

https://www.theguardian.com/commentisfree/2018/may/29/assissted-dying-katharine-whitehorn-alzheimers

Polly Toynbee starts off her article about former Guardian journalist, Katharine Whitehorn, who is living in the late stages of dementia, by saying:

Before Alzheimer’s claimed her, the legendary Observer writer made clear her view that the ban on assisted dying is cruel”

As someone diagnosed with dementia 4 years ago, I too am saying pre and post diagnosis that the ban on assisted dying is cruel.
I’m asking the question – is death better than allowing my brain to be claimed by dementia? I believe so.

Toynbee came under criticism on social media for her comments and I for one fell under the spell of retweeting these comments simply because I trusted the views of the person and not because I’d read the article for what is was – an honest, thought provoking article –

That’s what her two loving sons say and they want it written the way she would have”

Would I want my daughters to be criticised for wanting to express my thoughts once I tip over the edge into someone I don’t know? The thought of that makes me so sad – So I’m stating that now for all to see and for those who do criticise, to refer to my writing in the future.

We must remember that everyone is entitled to their opinions of assisted dying. For some it will be totally against their beliefs, their desires, their religion even. For me personally it’s a conversation that needs to happen and I admire Toynbee for writing such an article as it certainly got the conversation going.

Her old self would not recognise herself in this other being who sits in the care home dayroom. What or who she has become is a difficult philosophical question, but she is no longer Katharine Whitehorn as was.”

Yes, I do believe, as others do, that you should see the person, not the dementia. I just don’t want me as that person to be seen at all.

It is often said that once I’m gone over the edge it is my daughters who then ‘suffer’. When I’m no longer able to question the language used. When the word ‘suffering’ become an insignificance for the me that will be. The fight being over.

One of my 3 greatest fears is going over the edge into someone I wouldn’t recognise today.

Would I want to sit in a care home – No
Do I want to be dragged over the edge by dementia? No
Would I want to sit blissfully happy yet unrecognisable as the me that is currently – No
Would I now want my future self to fail to recognise the 2 most precious people in my life – of course not.

So why shouldn’t there be an alternative?

Some people have said, ‘You havn’t thought it through, what happens if your happy and content in your new self? You don’t know how you’ll feel’ …….I sigh at this point…..they’re missing my point. I don’t want to be that person……I’m making that decision now. Once again……..as I’ve said it before

I refer to Euthanasia in my book, Somebody I Used to Know.At the moment the only alternative is to fly to Dignitas. But I don’t want to fly to a strange land, to be in a building I don’t know, to be in a room I don’t know. To know now that my daughters would have to fly back alone. Even the proposed new laws in Guernsey refer to those terminally ill with a limited time left – but we’re never going to have that luxury of time defined end. Another prejudice against those with this cruel disease.

But why should dementia winning this battle be the only option open to us. I have signed the ‘DO NOT RESCUSCITATE’ forms, but often those with dementia have strong hearts that end up being the allay of dementia and keeps beating allowing it to turn the screws tighter.

We are in a catch 22 situation ……the law is on the side of animals not suffering but not humans ……..

Yes, it is an immensely complex moral, ethical and legal issue but should it also be considered as a simple matter, simply as a matter of choice? There will be those who fiercely negate such a thought – that is their choice – but shouldn’t those of us who believe in euthanasia also have the same right to choice?

Someone recently said ‘Very few of us experience a natural death’ – can’t for the life of me remember who or where I saw it…….but it is true – we die as a consequence of some event, some disease, some tragedy, some accident……but if dementia is our only way to death, it can be a long slow process if the rest of our organs are still functioning…..

All of this contentious, I know, but simply my views – please remember these words in the future if dementia sneaks up on the blind side and wins its game…..and especially if a journalist relays my thoughts as I’ve written them now, just as Polly Toynbee tried to do on behalf of Katharine Whitehorn and as I’d like my words to be told in the future, unless the law changes……..unless……..

I’m fighting for a Good Life with dementia, so surely I should have the Right to a Good Death too……and if you don’t agree with me, live in my shoes for a day……

In Toynbee’s final paragraph she writes:

But even those who think carefully about how they definitely don’t want to end up find that rational plans, made in good health, usually slip away during a step-by-step medical decline, no longer in sound enough mind. Too late to say stop”

That ‘cliff edge’ is a very unpredictable precipice – no one knows when dementia will pull the mat from under you and let you fall. This is what makes assisted dying so contentious.
If we had cancer, medics could hazard a guess at the length of time left when near the end, but dementia doesn’t allow us that luxury.

I’ve said often before – I wish I had cancer, because then I could refuse treatment and I would have a legal way out of this world.

I applaud Toynbee for her writing. As her sons said, “……..without doubt, that if the real Katharine could see herself now she would be horrified” just as I would be horrified to see myself in such a situation when dementia makes its final move and I’m no longer capable of outmanoeuvring it – will people criticise me then for the thoughts I have now? Will they criticise a journalist for speaking my words for me?

The fighting dementia in the mind goes on long after it’s seeped deep into our brains, and when, for a moment we win, the screaming emerges, just as it would from me…

Mostly, Katharine Whitehorn is placid, but in rare flashes of depressed lucidity, her sons say she asks for it to end, to stop now.”

Well you’ve heard my views from me now while I’m able and I hope journalist will take up my mantle and speak out for me if dementia is allowed to win me over…..on how I will hate the end result and want that choice of the final release…

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

40 thoughts on “A Contentious Blog on my end stage dementia – revisited

  1. I am strictly pro choice BUT disagree on this matter. It would be abused by relatives who wanted rid of their “expensive burden”, it might even be subconscious persuasion with neither side realising its happening. Also, it is the first taboo broken making it easier for the state to make the decision based on age and cost. Human life from the moment of first breath is too precious. That is why I am an atheist, no divine being could allow innocents to suffer or die early. I do my utmost to minimise non human animal cruelty by eating meat I believe has been humanely reared and slaughtered, and using animal testing free products where possible. We have taken in ex lab beagles, and they have taken time and patience to rehabilitate.

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      1. Thank you Wendy,as ever, true warmth and love often require hard choices. In my end-of-life care plan, I have included the request that, should I get to the state where I can no longer recognise and relate to my nearest and dearest, nutrition and hydration should be stopped, except to alleviate pysical pain or discomfort. I know it’s long & slow, but my experience is that people in end-stage dementia also lose their appetite. I want plenty of company, but my end of life plan should reassure those who are caring for me that I DO NOT WANT IT PROLONGED once I cant communicate or relate to them consistently for a whole week.

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    1. Med, these are not opinions spoken by abusive relatives, but by a person living with dementia, sanely making her own well thought out decisions now. It’s against her human rights to deny us the choices available to others

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  2. Wendy, I am WITH YOU 100 %! We allow our animals to be “put down” to prevent suffering but humans must go through the pain and suffering..so sad. If I were in your shoes, I would want the exact same thing…put me out of my misery as I also don’t wish to be remembered not knowing who I am or who my loved ones are. I have told that to my husband and family time and time again to make sure my wishes are known and respected. You have every right to have the control over your body. You are doing a wonderful thing in having this blog and writing about dementia in a way that not one of us can understand when we don’t have it. Bravo Wendy!

    Liked by 2 people

  3. Well said Wendy! I totally agree with all you have said. I have MS and am concerned that I will end up unable to communicate and locked in a body that is no longer functioning, for an indefinite period of time. I know that I don’t want to live like that. It is much easier for those who are not living with a progressive condition to dismiss our views but would they feel the same if they were living our lives? Long may you continue to write your blog; it brings much comfort to so many!

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  4. PS and please I don’t think its concention, more airing a topic more of us need to think around, and continue to interrogate our own thinking and that of those around us whilst we can. There is no coming back, but many routes to our end, and preferences are indeed only that.

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  5. Wendy – I blogged about this last month both from the view of a daughter of someone with dementia and the view of a GP who is keen to get people talking about this. I completely understand the desire for choice and control about end of life but the difficulty is exactly as you state; we cannot predict when is the right time. Even with cancer or similar life-limiting illness it is hard to give an accurate prognostic guide but with a disease that reduces capacity (such as dementia) how do we know whether someone has the capacity to make the decision to end their life? I think perhaps instead of a ‘final step’ decision perhaps we should be looking at a more gradual withdrawal of medical intervention, thus choosing not to prolong our life.
    No easy answers but good to keep talking about it.

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  6. My mom is at the stage of her disease where she can’t walk, dress, bathe or go to the bathroom by herself. She still has an appetite, but conversations are bizarre and she thinks I’m her sister. She’s happy, but I attribute that to the drugs shes on. Not the way I would like to go. Putting our animals down is heartbreaking, but so humane. I’m with you on this one Wendy!

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  7. Wendy, I also totally agree with you (and can’t go along with mdr107’s opinion that the family would decide to end someone’s life for whatever reason; I simply do not believe that that would happen, or if it did it would be a release from being in an unloving family).

    So true, the law is on the side of animals not suffering but not humans. That I cannot understand at all.

    I have nothing more to add, but just repeat, I so much agree with you, Wendy and the others who have made similar comments.

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  8. My mother and father-in-law are both living with dementia. My father-in-law is close to the end, he’s in a care home because his wife of over 70 years can’t care for him. He doesn’t recognise his children and sometimes not even his wife. All the things in life he enjoyed he can no longer do. He’s had a lovely life and it would be so humane if he could have an end of life injection to stop this cruel disease. I love my mother but. I don’t won’t her to disappear and forget all her memories that make her who she is but it is happening. She has already asked how I am related to her. I know what she was like and what she is now and I know if she had a choice what she would have chosen. Thanks Wendy for raising this issue and doing it so well.

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  9. After watching my mother in law slip into dementia, and visiting her in her care home during her end stages, I feel very strongly about a person’s right to a dignified death. Whatever our life circumstances, we live with as much dignity as we can. Why should we not die with dignity as well. Believe me, there is very little dignity left for people in a care home. Most of them are understaffed, and even with the best intentions of giving good care, patients are often neglected. …And there is the loss of personhood that is very difficult for the family to watch, and difficult for the individual as well! My heart broke one day when my mom-in-law said to me, “Once I was somebody, and I had people.” Sometimes it is those lucid moments that are so painful – when the person realizes that they are losing themselves. During that long decline we gradually had a harder time remembering the bright, energetic & feisty lady she had been. It took a few years after her death to bring back the happier memories of the person she had been and truly honour the courageous life she lived.

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  10. I suggest it might be worth pausing momentarily, whilst understanding peoples’ points of view. With teens we expect massive change in ideas likes body shapes, hair, behaviour as they merge into adults. Aweful at time but basically good. And we accept it. We might mourn the baby and the cute toothy grin buts heck its just growing up. Were we to see some of the dementias more in this way, the memory loss, the keys in the fridge, whilst it erodes the personality and we here people commenting on becoming a no one, and i know its NOT just another life stage, perhaps over time we would become better at saying our goodbyes to various sides of character and invest time in the new thin gappy story of this receding person whom we still love, but whose role as matriarch or whatever we are taking on. Yes it is loss of personhood, but also another route on the inevitable journey. We can work at evolving with that change, in the same way somehow we suddenly see our adult children as individuals within a peer group we respect and do not think of as “the kids’ . Do those of us who are coping well or otherwise with these changes in our parents listen to the wake up call to consider our own ends and how we might both want and not want that to be? Wendy has had many conversations with her daughters, and maybe subtle changes occur in the topics and the outcomes, so it not just a one off that we have to stick to.

    We sometimes only get to know someone when they are old, other we know across our generations, but living in their now is what we need to do.

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  11. I believe the same. My parents lived to the end with their dementia. I have no desire to follow that path. If it were possible I would sign up to euthanasia now. I can only live positively with my dementia for soong. I then want to die with dignity xx

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  12. Wendy, I am watching my partner on his journey with dementia, always a bright, highly intelligent man, a proper ‘smartarse’ but now sadly quieter and confused. I have no idea where we are going, how long it will take but I do know he would not ‘go quietly into the night’ if he had any choice and choice is what we all should have. I’m sure there are many people who follow your blog Wendy who would not tolerate any ‘wrong’ reporting, we know your views well because you are so skilled at telling us. A big hug and many thanks for helping so many carers and cared for! x

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  13. Most definitely agree with you Wendy. We need the choice. I have completed a very comprehensive Advance Care Plan (end of life plan), which is what we call it over here, which goes way beyond “Do not Resuscitate” – a copy sits with my daughter (who will be my Guardian by that point), my doctor and my lawyer – I have also made all my close friends aware, so that they are there to support my daughter when the time comes. Even though euthanasia is legal in some states, it does not cover those of us with dementia because of the wording of the bill. I only hope that my plan is followed through earlier rather than later, because as far as I am concerned, once I am not able to take care of myself, speak for myself and make my own decisions, the time has come.Thank you for speaking out.

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  14. Wendy, I totally agree with you on this matter. I have made a living will, and other arrangements and have made it very clear to my husband and daughters what my wishes are, I also feel that it is extremely unfair that euthanasia does not apply to people with dementia and also said that I would gladly get cancer instead. In act, two years ago I stopped all mammograms, colonoscopies, and gun check ups, I also stopped taking statins, what will be will be. I don’t want to sit in a chair all day totally dependent and not knowing who anyone is. I saw this many years as a nurse and certainly don’ want any part of it.
    If our wishes are made way ahead of time, while we can still make logical choices, why can’t they be followed when we decide “it’s time” and we canid with dignity and control over our lives?
    After 30 as a nurse and seeing what dementia is in the final stages I certainly don’t want that to be my end. Dignitas looks like the only place for now, I was already on their website and showed it to my husband. He had originally agreed to withhold all nutrition, but now admits that he doesn’t know if he could ever do it, so I don’ t trust him with my end.
    Until then I try very hard everyday, but it does get crappy at times

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  15. Oh Wendy you are an amazing human being. I love that you know what you want and do not want your girls to have to make a decision when it is time to end your life. Marg

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  16. Thank you for this Wendy. Mum Agnes and I, where at the first Dementia and Palliative care conference in Dublin a few months ago, my mum spoke about planning a good death. They said if you have an uncurable terminal illness which which ever type of dementia you have, this covers, you should have access to good quality palliative care. Palliative care is not just for the end of life or the last 6 months, which as you pointed out it very hard to judge and doctors are reluctant to commit. We are now planning to try and access hospice care here, we are hoping soon to have a chat with mum’s doctor to clarify that her DNR and no heroic measures wishes are still current. Palliative care in dementia should be standard and we should be talking about a good death (this could then lead to other changes like you discussed). Many years ago a doctor from a UK hospital said if you want to die at home, do not do into hospital, as then you get active care ie prolong life. There is also a form about prefered place of care, which for my mum is not the local hospital. When we tried to talk to mum’s respiratory nurse about end of life care, she was horrified.

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    1. Totally agree Donna and lovely to gear from you. Like you, my daughters are doing everything they can to combat the often misguided impression that any life is better than no life. 👍⭐️🤗xxx

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