A Contentious Blog on the end stages of dementia……

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.

43 thoughts on “A Contentious Blog on the end stages of dementia……

  1. I couldn’t agree more Wendy. It’s all about choice. Current law doesn’t give that choice. It just says “No”. Seems alien really, that living in a democracy as we are, we are being denied the right to choose……

    Liked by 1 person

  2. Wendy, I couldn’t agree with you more, my mother is a shadow of her former self and I know she would hate the state she is living in now, also hating what it is doing to myself and my sister. Choice in how we would wish to proceed in living a life with dementia is not something we really have. Regards

    Liked by 1 person

  3. Dearest Wendy,

    I couldn’t agree with you more. This is so well written, thoughtful and considered. Having choice is absolutely important and I really hope and wish that in the not too distant future that the laws in the UK do change.

    My mum was diagnosed with dementia 10 years ago and had it for at least three years before then. Her greatest fear was to be as she is now – incapacitated in a care home – no voice, movement or recognition. She would have hated us to see her like this.There have been many times when she has been very close to death and then has pulled through. As you say, if she had cancer, she would have the choice to refuse treatment.

    Its so important that we talk about end of life and how we would like this to be. Always respectful and dignified with choice.

    Ali
    xx

    Liked by 2 people

  4. My mother died with dementia & was not the mother I knew & loved for the final years. Her mother had died with dementia so I knew how strongly my Mum, a retired nurse, felt for assisted dying. YET once I was in that position of her carer I knew, even if given the means, I wouldn’t have the courage to end her life. Can I then ask a doctor, who’s sworn to heal people, to take on that duty? Please don’t all shoot me down. I’m being painfully honest here.

    Liked by 5 people

      1. Thank you, Wendy. Your views are well worth hearing & are thought provoking. I’m eager to learn how others think about this difficult topic. I was sure you’d read about my experience with compassion.

        Liked by 1 person

    1. Hi Trisha. I’ve had the same moment of truth. My mother has Alzheimer’s and told me (while she could) that she would like to end her life. I cannot legally do that for her here in Canada, and then I realized that, emotionally, I’m not equipped to do that either! We need training in giving someone a beautiful death, and we need society to remove the stigma that goes along with it. There’s a constant threat of people being horrified and angry when you talk about assisted dying, and yet it makes so much more sense than the terrible deaths that almost everyone is forced so suffer through, thanks to our sentimental notions of clinging to life, however much it is lacking in quality. I welcome the discussion and will want this option for myself!

      Liked by 1 person

      1. Is it sentimental to cling to life? I wouldn’t call it that. I’d say it’s instinctive. Of course a religious person may believe it is totally wrong. It’s so difficult isn’t it? I have carried a lot of guilt about putting my cat to sleep and that is not comparable to a human being of course. That was years ago. I couldn’t do it myself, and as a nurse I don’t think it would be right, and my personal belief is that it’s wrong to ask someone else to live with that guilt. Even if it’s a health professional rather than a relative, we also have consciences and have to live with our actions.

        Liked by 1 person

  5. The thing to me, as a health professional, is that suicide is a choice. Euthanasia is a choice, but means someone else is administering it. I don’t want to be that person, and live with that on my conscience. It’s not a choice for the administerer. If it were a family member who gave that final drug – would you want them to have to live with having done that for the rest of their lives? It’s a very difficult area isn’t it?
    Is it ok to make the choice now for who you might become. What if the later you can still get joy from a piece of music or a sunset? The later you might have different values to the current you, and to the later you, life might still have value. How can you predict? xxx

    Liked by 2 people

  6. Very well said, I agree choice is key but dementia robs of understanding choices, made harder because dementia manifests itself so differently in each person.

    Liked by 1 person

  7. Thank you Wendy, you write very movingly about your wishes and I wholeheartedly agree. This subject needs much more exposure.
    My mother did not have dementia but was severely disabled and spent her last years very dependent on others and in fear of what would come next and this made her very unhappy. She had always supported voluntary euthanasia and I had helped her complete an Advance Decision. She was in hospital having suffered a bleed on her brain and a second bleed on the brain meant that she could no longer move at all and lost her speech and her ability to swallow. At last her Advance Decision meant that she did not have to undergo invasive treatment which meant that she was “allowed to die”. Although I tried very hard to get her moved out of hospital to a nursing home for palliative care, I failed. She died the evening before she was due to be moved and this meant she’d suffered several days of inadequate pain relief, poor care and a slow lingering death which was cruel and unnecessary. I too have a degenerative disease and face the same bleak outcome as my mother.
    It will be a start if we can get the law changed to allow those with a terminal condition to have assisted suicide but we need much more than that for the many of us who fear for our remaining years.

    Liked by 1 person

  8. So often, after reading your blog, my first thought is usually “Ditto.” I’ve discussed, at length, with all 3 of my kids, my wants, needs and desires about assisted dying, and all the choices we’ll have (hopefully) by that time. I’ve also promised to come back to haunt them if they “forget.” (A family joke..lol) Your book is due to my Kindle around midnight, and I can hardly wait. Thanks so much for sharing your journey with us. It’s a huge help to know I’m not alone.

    Liked by 2 people

    1. Thank you for bravely tackling this subject in the way you have. Whilst in early stages I know without doubt I do not want a long lingering death and my family are aware of my views. I have asked them to consider euthanasia as their last beautiful gift to me … which should not to be regretted but remembered as a their very special gift of love.

      Liked by 1 person

  9. As always Wendy, you have tackled this difficult subject so well.We are given so many choices in our lives, why oh why are we not allowed to choose the time of our death particularly with dementia when life goes on long after quality of life diminishes.
    Thank you again.

    Liked by 1 person

  10. Very well said Wendy and I for one, whole heartedly agree with you. We allow our pets to be put to sleep but as humans we are left to suffer at times.

    Liked by 1 person

  11. Well put Wendy. I think knowing your views are clearly written is the only recourse we have at the moment. I have seen some great and some grim care for people living with dementia in care homes through work, and heard fabulous and heartbreaking stories from people when I give dementia friends sessions as a volunteer, but it’s the people closest to me that have made the dilemma of chosing when to die so personal and challenging:

    A few months after my dad had a diagnosis of frontal lobe dementia, about a year and a half after he had started to loose his most familiar nouns, he turned round to me and said “it’s so unfair isn’t it?” “What dad?” I responded (delighted to hear his lucid voice coming through for the first time in a few days) “I was the healthy one, and both my brothers went so fast, but I’m having to watch myself die like this” “Yes dad, it is so unfair” was my response, with which, knowing he’d been heard, his shoulders dropped and he shuffled out of the room. (his younger brothers had both died suddenly one of a heart attack, the other a stroke a few years later). At that point he had had his driving licence revoked and was just giving up volunteering but for another 6 months he could still switching the “front” on for strangers in 10 minute bursts.

    A year ago he asked me how old he was “83” I replied “no I must be 84 by now”, (his dad was 84 when he’d died of a stroke) “how long do I have to keep going like this?” Now I think he has little patches of joy in the day but each month he is existing more, living less.

    I struggle with the ethics of asking someone else to help anyone die. I struggle with the question of which point my dad would say he has/will have made the switch to feeling “living well with dementia” no longer applies to him. I struggle with knowing he is in there somewhere, but the disease is in control now. He frequently looking like he’s hoping to move on, but has no words to say, nor legal ability to do, and his strong heart, perfect blood pressure and appetite ensure he keeps existing. And this I think is the challenge of assisted dying, because I agree with him: Dementia is very unfair.

    Liked by 1 person

  12. Thank you for this Wendy. It really is an important debate. Having recently heard about death cafes, and people speaking openly about dying with dignity, I hope that it is no longer the taboo subject it once was. I think the starting point is the ceiling of care discussions, and advanced directives now starting to become more commonplace, but talking early about your thoughts and wishes for death is so important to ensure a good death as well as a good life .

    Liked by 2 people

  13. Thanks for talking about it. Assisted dying, having a good death. Currently the 2 issues relating to dementia, is though it is a terminal incurable illness time lining the end is impossible. Then the other is mental capacity. I get newsletters from Dignity in Dying and I sign petitions. We should have right to choose but with dementia it gets complicated.

    Liked by 1 person

  14. My mother died at age 89 and did not want to be kept alive by artificial means. She got an infection, was running a fever, so we gave her antibiotics to bring down the fever so she would be more comfortable. But I believe life is precious, even if it is crippled, or our minds or bodies are weak or injured. That seems a very rare view these days — but I still hold it. My Mom had dementia. When I was with her she always knew who I was. When I left there was often a disconnect. She would call me on the phone and ask me if I could help her by telling her who the two young ladies were who came to visit her. I explained that they were her daughter & granddaughter. She exclaimed — but I KNOW you! Yes, she did. And so even when there were times when she didn’t — her life was precious to all those around her. I’ve written about my mom often, in my blog. She was born on a Friday the 13th. It was never an unlucky day for her. She died on 7/7/7 the perfect number. I think that she died at the right time. Not because she chose it — she didn’t — but because she was called home on that day. Just my two cents. You write a very thoughtful blog. Ann Miko

    Liked by 1 person

    1. Thank you Ann – at least I got the conversation started and that’s all I wanted. Have loved that people have felt able to express their own views – just how a conversation should be.xx

      Liked by 2 people

  15. Hello Wendy, I feel your anguish, CHOICE is very hard to do yourself, but HONESTY is the lords gift with the greatest being LOVE.
    My mother-in-law has Dementia with Lewy Bodies and is now in care.
    We nursed Mum For two years and it nearly killed us, her sons have been torn apart, she would have hated that her family have been torn apart.
    It is so hard to explain to a human being when they have no recognition of rain, sun, moon, trees family members, No Memory at all, does not even know herself, AND PERSONAL CARE IS THE WORST, She does not like anyone touching her and will swear, bite, spit and lash out, is this the way to live and for your family to see, the anguish is huge, my love and respect for you Wendy is 100 percent.
    You are very brave and when you started this journey You knew the day would come to remind people that you are a human being and that your choice is……
    But every now and then when I brush Mum’s hair, there’s a small window and she told me I HATE THIS and will start crying, and this is the “LACK OF ABILITY TO UNDERSTAND”
    Yes Wendy this is the message that my mother-in law is giving me, so when if you can change the law for dignity and to have doctors on board would solve the emotional and financial burden on families.
    My husband and I read your book in early February and have read many more other stories looking for answers, and the only answer is to die with dignity.
    Love and kisses to you and thank you for putting yourself out there with your thoughts and for making DEMENTIA AWARE.
    You will always be remembered for your Honest Reflection on Life.

    Love you xxxxxx

    Margaret and Michael
    LINCOLNSHIRE

    Liked by 1 person

  16. As a doctor and a daughter of someone with early onset (and now very advanced) dementia, my views on assisted dying have changed. I used to think, and commented regularly in my blog, that mum would have hated to have become the person she is. But I cannot honestly say that my mum is currently unhappy, if anything she is more peaceful and content than she ever was in her fully cognitive days. Yes, the woman who was my mum has gone, but would I want to end the life of the person who is currently in front of me? Her quality of life may seem to me or to others to be poor but objectively, assessing her as I would a patient instead of a daughter, I can see that she does still get something out of being alive; she smiles, she laughs, she is not in pain, she is not distressed. Predicting how we will feel and who we will be at the end of life is terribly hard. The key thing is talking about it, raising the profile of end of life care and ensuring that care is the best it can be. Often people’s fear of nearing death is much worse than the reality. We don’t see death any more, people are whisked away to die in hospital rather than at home and it has become taboo but the reality is that pain, distress and agitation are all symptoms that can be dealt with if good palliative care is on offer. If more people knew this and felt confident about receiving that care I think lots of the fear would be alleviated.

    Liked by 1 person

    1. It’s true that all the emotional components of living with dementia can be handled and treated with love and compassion; but I think this overlooks the bigger question of why we cling so ferociously to life. My mother is entering a calm, less distressed stage of her Alzheimer’s, and yes, it’s a relief to everyone who loves her, but ultimately she will continue to deteriorate and some complication of the disease will be the end of her. It’s fine to acknowledge the “zen” of dementia, but when the body gets bedsores and the brain forgets how to swallow? That’s when quality of life is gone, and where most people’s fears begin.

      Liked by 1 person

  17. I have watched 2 close family members struggle with this disease & believe you are being realistic in your views and wishes. Also very brave; your daughters must be immensely proud of you. I must also mention that I have read your wonderful book. Thank you for writing it; I found it encouraging & inspirational – many of us are going to face this dreadful disease.
    Many of us are following your journey & are very moved by your attitude, grace and courage.

    Liked by 1 person

  18. The cells in our bodies have a finite life & when the process of cell regeneration ceases, for example in the heart, the heart stops working & death follows. In an obituary, often the cause of death is stated as: multiple organ failure. How terrifying would it be if all our life support organs except the brain were functioning reasonably well? If I understand correctly, this is Ms Whitehorn’s condition now. One wonders what exactly is going on in her day to day living, no, it’s not living, existing would be a better word? Wendy discussed this in her book.
    I witnessed the sad death of my younger brother, age 69, kept alive, following a heart attack, for several days in intensive care because there was no one available to discuss organ donation with his next of kin due the the New Year holiday. He passed away soon after the life support systems were switched off. Euthanasia, for want of a better word?
    DNR – Do Not Resuscitate – will be on my medical notes. I have chosen this, safe in the knowledge that my next of kin when ‘my time comes’ will not have to go through the agony, pain & anguish I did, whilst doing my best to comfort & support my dear sister-in-law.
    Those six letters…CHOICE, powerful, thought provoking, debatable, subjective to the nth. If the will is there; JF Kennedy knew this – ‘We choose to go to the moon…& do the other things, not because they are easy but because they are hard.’ Who will dementia sufferer’s Kennedy turn out to be?

    Liked by 1 person

  19. I wish I had taped Christopher and Terry Pratchett having just this conversation at the ADI in London in 2012 , I think, seems a lifetime ago. Keep your words coming my brave friend xx Veronica

    Liked by 1 person

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