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    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

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DNR - do not resuscitate

Discussion in 'Middle - later stages of dementia' started by copsham, Aug 2, 2017.

  1. copsham

    copsham Registered User

    Oct 11, 2012
    Hi all, I was searching the forum re DNR. We completed a do not resuscitate form in relation to our mother several years ago And I was wanting reassurance about it. I came across this article posted by sarahc many years ago. It is such a moving and meaningful article that I am taking the liberty to repost it.

    I visit an elderly relative aged 101 who is mentally as bright as a button but her body is so frail and crumpled. When she gets an infection she is near deaths door but doesn't go. My mother aged 90 with dementia is as tough as an ox,. Their experiences as so different but both have DNR forms completed. I found this article really helpful.

  2. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Thank you for posting this. I'm not in any way religious but found it very moving. So much wisdom in few words.
  3. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    Thank you for posting. Like Pickles I am not religious at all but that was full of a lot of wisdom and comforting words xx
  4. LadyA

    LadyA Registered User

    Oct 19, 2009
    That is excellent. It's a subject that comes up over and over again on the forum, and this article is such an excellent, clearly thought out discussion on the subject. Thank you.
  5. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Four words from that will stay with me, ' let go, let be.'
  6. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    North Bucks
    HELLO Jay
    I am sure there are many of us on TP who will know and share with you( without further explanation)the enormous significance of those four words
    God Bless
  7. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    My thanks also for this excellent article. Four significant words indeed. I'm sure reading this would be an enormous help to those struggling to come to terms with the subject. It can take time to do so.

    Loo x
  8. gringo

    gringo Registered User

    Feb 1, 2012
    “Giving up implies a struggle
** Letting go implies a partnership
** * Letting be implies, in reality, there is nothing that separates
    Giving up says there is something to lose 
** Letting go says there is something to gain 
** * Letting be says it doesn’t matter
    Giving up dreads the future
** Letting go looks forward to the future 
** * Letting be accepts the present as the only moment I ever have
    Giving up lives out of fear
** Letting go lives out of grace and trust
** * * Letting be just lives
    Giving up is defeat at the hands of suffering 
** Letting go is victory over suffering
** * * Letting be knows suffering is often in my own mind in the first place
    Giving up is unwillingly yielding control to forces beyond myself
** Letting go is choosing to yield to forces beyond myself 
** * Letting be acknowledges that control and choices can be illusions
    Giving up believes that God is to be feared 
** Letting go trusts in God to care for me 
** * Letting be never asks the question”

    I’m glad that this helps some of us, but I must confess that I don’t understand it, and it makes me angry.. ’Letting be says it doesn’t matter’. It doesn’t matter?!! It matters to me! Are we being told that we should just shrug our shoulders and walk away from our grief? I know we all have to deal with the grieving process in our own way, but it seems to me that anyone who can walk away from it like that hasn’t ever been in in the pit that I inhabit.
    Letting go and letting be. Yes great. How do I do that then?
  9. philamillan

    philamillan Registered User

    Feb 26, 2015
    Hi Gringo.

    I see your pain.

    I find that to get clarity I will ask myself what would I want for me in that situation.

    Although it would be painful for my loved ones I would prefer not to suffer or at least limit the period of suffering.

    Death is inevitable, what matters is how we face it.
  10. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    I spoke to a nurse once (not in a professional capacity) who felt strongly that allowing someone to die was the kindest and bravest thing to do when the time came. She said she had seen many instances where people had been kept alive when they had obviously had enough because their nearest and dearest were too selfish (her words not mine) to let them go.

    Her words have stuck with me, as will this article..

    My dad has made his wishes clear and has a DNR in place and a directive that he is not to be kept alive or given treatment when his time is nigh. It'll be hard but I will respect his wishes.
  11. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    My mum has a DNR in place when the time comes, but however much we want an end to their suffering with this awful illness I don't want to lose my lovely mum. I just hope that she passes peacefully and that decision will not happen.
  12. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    North Bucks
    Hello Bunpoots

    The word 'Selfish' sounds harsh .but I reluctantly believe it is true
    When you are losing someone dearly loved it is hard to think you are being selfish
    but I have lost all my family .mum ,dad , brothers and sisters and I know the pain

  13. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    Hi there

    It is such an emotive subject. When do you say “OK enough now. Let them go peacefully”.
    Please I understand this is a totally different situation but in animals I believe in quality of life. I don’t mean an loved animal getting older, slower and a few creaky joints or sight fading but when their quality of life is non existent or they are in pain I believe it’s time to let go and it is the greatest act of love you can do – to push your own needs aside and let them go peacefully.

    My mum has near zero quality of life - bed ridden, doubly incontinent, no longer speaks, barely opens her eye but she still has an amazing appertite for her pureed food. It amazes the NH staff what a big appertite she has lol. But when she no longer takes food or fluid I don’t want her fed by tubes. I don’t want her resuscitated or kept alive. I know my mum wouldn’t want that either. That is not a life for any living thing and given her condition/quality of life/age yes I would want her to slip away has peacefully and pain free has possible. I love her to much for her to suffer further.

    But it is such a hard subject and so full of many emotions of which none are right or wrong and we can only continue to support each other – this evil illness has a lot to answer for.

  14. Murper1

    Murper1 Registered User

    Jan 1, 2016
    An inevitable subject for everyone close to someone suffering from dementia. I never expected to be spokesperson for a loved one up to and including their death, and nothing prepared me for that. My feelings during and after the death of my brother, my father and my mother have been different for every tragic occasion. For my Mum recently (and in contrast with previous), my feelings were of a quiet happiness as I felt overwhelmingly as I sat with her that she was skipping joyfully away from her dementia prison....and I knew this time that my own deep feelings of loss are my burden to deal with and not hers thank goodness. I had had reason previously to find out about end of life choices and had learnt that a dying terminally ill person often will stop eating and that it may even help induce a feeling of wellbeing and calmness as the body closes down; therefore, to automatically try to keep someone nourished with tubes in this situation, or other resuscitation, is likely to inflict pain and fear rather than being helpful for them. When I was sorting through Mum's things after she had died, I came across something written at the time she started going downhill which was long before dementia diagnosis; Mum had said 'I'm not frightened of death, but I am frightened of becoming a zombie unable to do anything for myself'. Tragically, she was forecasting her future self. So, having been admitted to hospital after her own throat had caused respiratory arrest (from which she was resuscitated), and the nurses said she wasn't eating and that they didn't want to force her to, I knew that I was right to agree with them. She died soon after, quietly and serenely and maybe fleetingly back in control again. I appreciate it isn't the same for everyone.
  15. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    oh Murper1
    "my feelings were of a quiet happiness as I felt overwhelmingly as I sat with her that she was skipping joyfully away from her dementia prison...." This statement made me smile and what a lovely way to view such a moment.

    I will hold this in my heart when my mum finally finds peace - thank you xx
  16. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    Sorry duplicated a post.

  17. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    #17 Loopiloo, Aug 3, 2017
    Last edited: Aug 4, 2017
    The subject of resuscitation is a very difficult one.

    My husband had vascular dementia for at least 10 years before he went into a care home after 6 months in 3 hospitals following a fractured hip and he lost a lot of mobility. But not all of it was lost until fracturing the other hip about 8 months later. His dementia and Type 2 diabetes had become much worse in the hospitals. In fact in the 3rd hospital,the local Community Hospital, he was critically ill when I discovered his diabetes had been badly monitored, and he came close to death. (the care home were excellent concerning his diabetes)

    Henry never came home, I was devastated. The consultant (and also nursing staff) said his needs had become more than I could cope with now and he needed full time professional care.

    Soon after he was in the care/nursing home his Care Plan was discussed with me, his named nurse gave it to me to read. I had already been asked about resuscitation and said I definitely wanted him resuscitated. Imagine my shock when I opened the Care Plan and there was a DNR form in the first page. Signed by a GP in the Community Hospital who had never ever spoken to me. ​I was furious, discussed it with the named nurse and had this changed.

    Then I discovered that almost all of the of the 16 residents in the dementia wing had DNR in place. I read all I could about DNR, spoke to my GP and after much deep thought I changed the decision to DNR.​

    I knew this would be Henry’s decision, he was matter of fact about death (before dementia) and his attitude was we all die and so be it when his time came. If his heart stopped beating then his body was ready to die, considering his age. Had he been aware of his dementia decline he would certainly not have wished to be ‘saved’.

    His last 2 years in particular were very poor concerning physical health with numerous infections, chronic kidney failure and other problems, he became very frail although his heart was not a problem. His dementia increasingly progressed - no speech, ability to eat, doubly incontinent a long time, and many of the other dementia problems. Yet the essence of Henry was quite often apparent, and at times an awareness… tears would come into his eyes then he’d wipe them away and smile.

    Henry died in June of last year, unexpectedly as he had improved quite a bit the last six weeks and had had a particularly good day, laughing joking with staff and enjoying ‘people watching’ etc. He was fine when checked at 11pm but not at midnight. Paramedics were routinely called, then a GP as he was distressed and agitated.

    The GP said Henry would not recover from what was a massive heart attack. But he thought he would last into the afternoon, and our daughter was coming down from Aberdeenshire (3 hour drive) hoping to be with her Dad at the end. He was given morphine and went into a sleep from which he did not awaken. He died at 2.35am, he was 84. His passing was peaceful.

    I deeply grieve the loss of my husband, companion, best friend and I miss him more than words can express. I do not think after almost 59 years of a close marriage that this will change. But he is now free of this horrible disease which stole him away from himself, and from me and his family. Stole many years of our life together, changed him beyond recognition from the man he was. Now he is at peace. His suffering still haunts me but I try to focus on the lovely person he once was and cherish the happy memories as a couple and as a family.
    It is unbearably painful when someone we dearly love leaves this life. The heart does want to hold on to them, there are selfish feelings. But I do not regret the DNR decision, even although being a massive heart attack it may not have been appropriate anyway. I feel his body had taken enough.

    But as you say Murper1 it is not the same for everyone. I do appreciate that.

    Last year after Henry’s death I spoke to my GP about DNR for myself, she agreed with me and my reasons. In June this year it was arranged. I again asked her if she thought I was doing the right thing, she thought for a few minutes then said yes she did.

    She said even if I survived resuscitation I would have some after effects. Also with older people this is more likely.​ The risk of brain damage, a stroke, possibly put on life support only for the inevitable family decision when to turn it off.

    I am doing this for my family as well as for myself. This June when one of my grandsons (age almost 31) was here the subject came up and I told him. He said he and his wife have been through this twice, once with his paternal grandmother, and also with his wife’s grandmother. He said it was heart breaking when they were on life support, extremely painful and upsetting having to make the decision to end their lives. He approved of my decision.

    I just want to make things easier for my family at what is a difficult time for them and many things to attend to. But also I would like to let go and let be, the best of life is behind me. I would rather not prolong the agony for them and also myself.

    Sorry this is over long, and all about my situation.

    Loo xx
  18. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Loo, a very moving post, and one that I'm sure many of us can relate to x
  19. LilyJ

    LilyJ Registered User

    Apr 13, 2017
    We discussed DNA CPR with our GP regarding our PWD after reading 'In the Midst of Life' by Jennifer Worth, author of 'Call the Midwife'
    It's a book well worth reading.
    My BiL had a terrible illness and was dying for years but had no DNA CPR in place and when he died very suddenly in the end his poor wife was instructed by the ambulance service to try to get him on the floor to attempt resuscitation. It was such an awful, undignified end for him and also for her. If she had succeeded in resuscitating him he would have spent who knows how long in hospital with even less quality of life than previously.
  20. gringo

    gringo Registered User

    Feb 1, 2012
    I’m sorry I didn’t make myself clear. Yes, of course, we have to accept the inevitability of death. And, where dementia is a factor, we have to also accept that there will be situations where a quick death may be less painful than a slow lingering end. We must acknowledge, however, that there is no one size fits all.
    But what I was originally concerned with was how the survivor should deal with the death of someone very dear to them. The article, referred to by the OP. talks at great length of the benefits of letting be and letting go. I understood that to mean that we should allow the sufferer to die. I believe that is a given and could have been said more succinctly. But, and this is what incensed me, there was no recognition this is not a pain free option. Maybe there are those who would feel a warm glow at their humanity, but I think very many will be beset by doubts which can only add to their grief. In effect ‘letting go and letting be’ can and probably will add to the pain of losing a loved one, as you ask yourself whether you ‘let go’ too quickly.
    The grief of losing a dearly loved companion is a traumatic event and not to be assuaged by a feeling of satisfaction at having ‘let go’.

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