Should I tell her she's going to die? And if so, how on earth do I do it?

Discussion in 'I care for a person with dementia' started by lashkari, Aug 10, 2015.

  1. lashkari

    lashkari Registered User

    Mar 23, 2015
    Hi, my name's David, I look after my mother at home 24/7. She's in the final stages of Alz Dementia. Despite a fairly rapid fall in fluids intake and a massive increase in sleep, she's still very cheerful, although just beginning to display signs of emotional withdrawal. The GP referred us to the local hospice for their Hospice at Home service, and they're going to support us as we keep Mum at home for however long her piece of string happens to be.

    Just one thing bothers me: she's never really accepted the diagnosis, and so we have tended to avoid talking about the subject of her death in her presence for fear of frightening her. On the other hand, she has a right to know what's happening, I guess. Against that, her short-term memory is so poor that I fear that, however softly we try to put it, we'll end up distressing her every time we end up having to tell her all over again.

    Any ideas/experiences very gratefully accepted

  2. Kjn

    Kjn Registered User

    Jul 27, 2013
    I have no answer I'm afraid David but I hope someone has, personally (not been in that situation) I'd possibly not say anything espeshially given her getting distressed bug I have no experience to know.
  3. Beate

    Beate Registered User

    May 21, 2014
    Why on earth would you want to distress someone by telling them they are going to die if they don't have the mental capacity or the memory to absorb it? What possible good could come out of it, especially if you are having to do it all over again? She is still cheerful, don't take that away from her. Make her last days pleasant ones.
  4. lashkari

    lashkari Registered User

    Mar 23, 2015
    Thanks, Beate, I really appreciate your directness and candour. I think that's what I wanted to hear anyway but it is a bewildering and confusing time (although the hospice is brilliant). I'll get back in the sea and keep swimming!!
  5. Tin

    Tin Registered User

    May 18, 2014
    Don't do it, just leave her be with whatever happy memories she has. There is absolutely no need to introduce anxiety however long or short her memory of it will be. Honestly and from my heart, what would be the point?
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I also agree. There is absolutely nothing to gain by telling your mother she is going to die. Let her spend her final days, weeks, months in ignorance, pain free , peaceful and calm.
  7. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Another vote for not discussing it.
    There was a thread on here about care homes who had a policy of "correcting" people so if some old boy in the home asked when his wife would come to visit the staff were told to say "she won't be coming she's dead". As his wife was dead then isn't it kinder to say "maybe tomorrow" and hope forget? This strategy was described as cruel as someone with AZ by the very nature of the condition forget things so every time you tell them it's like they're hearing it for the first time.
    I once reminded my (late) mother when she asked about him that my older brother was dead, possibly one of the dumbest things I've ever done, she cried for days.
    If it were ordinary circumstances she should of course be kept fully informed about her health but would you tell a very young child with a terminal disease they were going to die I wouldn't?
    Other people may have different opinions and I'm sure will feel strongly on the subject and I know what I've said might be seem as disregarding her rights to some extent, however, you come into this world screaming no need to go out the same way so why put the fear in her mind. You say "she's still very cheerful" I think I'd just enjoy that and not rock the boat however well intentioned.
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Another vote for not telling her. If she is happy now, then I think that is a great deal to be thankful for.

    Some people do like to tell you you should always tell the person the truth, but from long experience I have found that it is usually people who don't understand dementia, who only think they do.
  9. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I think it is so good that your mother is cheerful when so many with dementia are anything but. Please don't so anything to jeopardize that.
    I can't think of many things more cruel than to tell someone who is unaware of it that they are dying, especially, as others have said when dementia is involved so that is will cause distress for no reason at all but could make someone feel sad even when they no longer remember the cause of the sadness.
  10. angelface

    angelface Registered User

    Oct 8, 2011
    I never told either of my aunts who had dementia that they were dying.

    It was evident to me what was happening,but CH staff in both cases would not admit it to me even when I asked directly. I think as they cannot name 'the hour nor the day' they do not want to say anything at all.

    Even had I told my aunts they would have been beyond understanding what I said. But there is nothing to stop you talking, saying you love them or whatever you want to say.

    I was sitting with my younger aunt,just talking to her,her gaze was completely vacant. Suddenly her eyes were fixed on me,and she raised her eyebrows ( its a thing we do in my family - no idea why). Then the vacant gaze came back,but just for that second I knew she was aware.She died 2 hours later.

    I dont think Alz suffers need to know what is going on,but I do think little miracles can happen at the end. I hope everything will be calm and peaceful for you.
  11. Chemmy

    Chemmy Registered User

    Nov 7, 2011

    I'm pretty sure I'd struggle to accept that diagnosis too.

    I'm also in the 'don't say anything to upset her' camp. If these are to be her final days, the kindest thing you could do is to try and make them as stress free as possible.
  12. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    A year before he passed away Pete was sectioned; in one of his very last 'aware' moments he said to me 'I won't be with you much longer'. The tears were rolling down his face-he was in absolute torment. To inflict that pain on someone is a no go area in my opinion.

    Take care

    Lyn T XX
  13. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Nope, don't say that to her. It's unnecessarily cruel.

  14. meme

    meme Registered User

    Aug 29, 2011
    I would follow her lead...if she is cheerfull, what a blessing. If she asks a direct question about dying then I would be honest but otherwise just do it her way.
  15. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    If....and it's only if she was to ask directly " Am I dying"? I might say " yes Mum. ...when it's time, but it's not your time yet."
    I would not contemplate telling her if she didn't ask.
  16. lashkari

    lashkari Registered User

    Mar 23, 2015
    Yes, that's the situation I was thinking of, really...
  17. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    Why? We are all dying - a cliche maybe but very handy and equally honest at such a time.
    If someone asks the question, it can be very rarely that they want the answer to be afirmative, more likely they are looking for reassurance that they aren't, especially if they have dementia.
    Maureen's response is perfect.
  18. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Well said Saffie-and Maureen.

    There are so many things that SHOULD be said before someone passes (and I'm not implying that you haven't said the important things lashkari) but I don't think talking of dying is high up on the list-even if she asks directly. Let her go with as much happiness as she can muster. I've a feeling that when the time comes you will be glad that certain words weren't spoken.

    Take care

    Lyn T XX
  19. janetlynn

    janetlynn Registered User

    Jul 22, 2012
    Hi David,

    I can understand how torn you must be about what to do. You feel as if you have to do what is right for your parents, just as they have always done what is right for you. Look back on your childhood and remember those times when they may have protected you as that was the kindest thing to do. Now you can do the same for your mother. Please do not feel guilty by keeping the truth from her. Do what is best for her. Like others have said, there is no point in upsetting her.

    Take care.
  20. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    David, what's your mum going to do with the information if you tell her she's dying? Make peace with some long lost relative she was rude to50 years ago? Re-write her will? Work through her bucket list?

    You really have to think about how the information will benefit her and if she's in the advanced stages of Alzheimer's I can't see how telling her she's dying will afford her anything. Will she understand even? All it may do is upset for a while until she forgets it but it'll unsettle her and as you've obviously worked hard to look after her up until this point don't mar her last days and weeks with information that seems a) useless and b) potentially really upsetting.

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