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the waiting to let go.

Discussion in 'End of life care' started by Emily88, Oct 10, 2017.

  1. Emily88

    Emily88 New member

    Oct 10, 2017
    2
    We just received a call today from nans care home saying she has not eaten or taken fluids in a few days now. She is in the last stages of dementia so we expected to lose her at some point but it is killing me the longer time is carrying on when I want her to be with grandad now and not in the state she is in anymore. My mum is now by her side but if anyone has been through this that could help in any way I would be most grateful as I don't know how someone can survive without fluids and nutrition and her organs are shutting down so I guess I just need to know what to do. :(
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    52,638
    Dundee
    Hello and welcome to Talking Point.

    I'm so sorry to read about your nan but I'm glad you've felt able to share on Talking Point.

    Where your nan is now my husband was just over a year ago. I know how hard it is to watch someone you love when they have reached this stage.I spent the last week of my husband's life just sitting with him, holding his hand and talking to him. I'm sure your mum will be doing something very similar. It will be very hard for you, I know, but try to just be there for your mum. Even if you're not actually with her it will help her to know she has your love and support. All you can both do is wait and be there for each other - and for your nan.

    Thinking of you at this most difficult of times and wishing your nan the peace she deserves.
     
  3. Emily88

    Emily88 New member

    Oct 10, 2017
    2
    Thankyou. So sorry to hear about your husband. I was in a slightly similar situation when my fiancee had a major heart attack in February but we were lucky as after being in a coma for a month he pulled through so we count our blessings for that. I totally agree that standing by them and holding them is the closest and best help you can give but i have so many questions in my head about nan. My dad also has alzheimers but he still loves life and isn't anything like nan yet. I feel guilty as i know people go through so much worse but I just wish I I knew when her body decides it's had enough as it seems so cruel the way she is now.
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    52,638
    Dundee
    Stop feeling guilty - you have absolutely nothing to feel guilty about.
     
  5. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,469
    Ireland
    This time of just waiting is I think the hardest. You enter a sort of Twilight zone, where it seems like your whole world has become just this watching and waiting. It's over two years now since my husband died. Thinking of you and your mum, and wishing you strength.
     
  6. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    898
    England
    Sorry to hear this.
    Be grateful if it is indeed quick.

    Waiting and watching for the 'final end' and finding it keeps 'extending itself' is even worse. My mother has been eating very little for the past 2 years and has periods of 'refusal' and often 'nil by mouth' after one of her emergencies.

    You don't know how often and how much I wish it could all be over for her as she has, and has had for years now, absolutely zero quality of life.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    4,336
    South coast
    I sat where you are sitting now in April when mum died. By the time she had passed away she had not eaten or drunk anything for 17 days. Up until the last few days she was still able to get up out of bed and watch everyone in the lounge and she could talk to me, so had I not been told that she at the final stages I dont think I would have known. Three days before the end she seemed to be drifting in and out of conscience, then in the last days her breathing changed so that there were pauses sometimes (Cheyne Stokes breathing) and her limbs became cold . She became very agitated and could not bear anything touching her skin, but once she was put on a syringe driver it all calmed down and mum lay there peacefully. The last 48 hours seemed unbearably long: talking to her, washing and moisturising her skin, the care home staff bringing in an endless supply of tea/cofffee, biscuits and toast. You comb her hair, put on her favourite CD, go to the loo, drink some more tea and find the book she had as a child.

    It is the last long vigil and it is hard, but it will be over, your nan will find peace and we will be with you holding your virtual hand.
    Many ((((hugs))))))
     
  8. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    142
    My mum is on end of life care and I visit her every day. She not eating any solids now but drinking quite well, which I think is keeping her going. We have times when she is just sleeping most of the time and days when she appears to be more lucid saying repeatedly that she now wants to die and can I help her. She says she wants to come home to die but, of course, that is not possible although I would love her to come home and end her days but I know that I cannot look after her and she now needs the 24 hour excellent care she is receiving in her care home. But how do I respond to her when she says she wants to die, I just have no words to say and fight back the tears as I don't want her to see me upset. As has been said previously this stage could go on for months or even years but I just don't know how I will get through it. I don't think she will ever forgive me for moving her into residential care and the thought of her dying without her forgiveness will be heartbreaking.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    4,336
    South coast
    ((((hugs)))) @Scouts girl. She may be asking your permission to pass away. At the end, just a few days before she passed away mum was saying that she wanted to die and I just said, that it was natural and, although I would be sorry when she had gone, I understood that it would soon be time.

    When PWDs talk about going home, they dont usually mean the place they previously lived in. It is more a state of mind and what they really mean is that they want to go somewhere safe. I would reassure her that she is safe, everyone will look after her and that you will be there looking after her.
     
  10. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    898
    England
    Just some reassurance that you're not alone. At least my mother doesn't talk any more so tell anyone she 'wants to go'. Like you I wonder sometimes if Mum is hanging on to make me suffer for longer for 'daring to put her in a Home' which she definitely never wanted.

    Awful as it sounds, but sometimes I do wish that the carers weren't quite so skilful at getting food and fluids into her, as once dehydration sets it it's supposed to not be distressing and they just slowly fade without any obvious pain. But after each emergency the carers persist, consistently stroking her throat with each sip until a little goes down, which of course keeps her going. If she were aware she'd be screaming at me, "This is no life' but there's nothing more I can do now.
     
  11. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    142
    Yes you are so right lemon juice. I too, wish the carers wouldn't try so hard to get mum to take food and fluids but they do have a duty of care and I suppose they have to keep encouraging mum or seen to be lacking in their caring role. I will see what today brings and hope that I may get the hint of a smile.
     
  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    898
    England
    Seems as if we could now be reaching the final, final stage now. Having had 2 (unitiated on my part) recent phone calls to reassure me that my mother was 'fine' and 'comfortable', I find on my visit today that my mother has not been receiving food and fluids for a while now and is on 'comfort mouth care only. She's been sleeping most of the day for years now, but today she seemed 'unrousable' and comatose. A bit like f-I-l was at the end. At least it may mean no more emergency phone calls and she does seem 'calm and peaceful'.


    So how was it Scouts girl?
     
  13. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,469
    Ireland
    @lemonjuice I know you, of all people, will understand when I say that I really do hope so, for both your sakes. xx
     
  14. canary

    canary Registered User

    Feb 25, 2014
    4,336
    South coast
    Yes, @lemonjuice it does sound like your mum is finally reaching the end.
    I hope, for you and your mums sake that it is quick and peaceful
    xx
     
  15. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    898
    England
    I must admit I do so wish it will be too. We prayed together when she was first diagnosed for so many years for her suffering to be over before it reached this stage, having seen it with 3 relatives before but it wasn't to be.

    At least today those 'furrows' were missing. I'm hoping that the euphoria of natural dehydration will have at least prevent any pain.
     
  16. Sparkling Wine

    Sparkling Wine Registered User

    Apr 14, 2017
    10
    Hello Emily,
    In June this year, my mum was at the same stage. The home rang to say she had a chest infection and wasn’t able to swallow or cough very well any more and therefore couldn’t drink or eat and was on end of life medication and mouth care. The carers in her home could not have been more lovely. I went to see her, and in less than a week it was all over. I was with her as she took her last breath and she was asleep and peaceful at the end. I wanted it to be over for her and for her to be with my dad again.I don’t know if this will be your experience but as someone who has been there recently, I just wanted to let you know your experience. You do what you feel is right for you. So many people on this forum have been on this journey and understand. I am so sorry you and your family are going through this and I am sending you lots of love and hugs.
    Love Sparkling Wine x x
     
  17. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    142
    Hello Emily, I so feel for you, my mum is refusing solids but is drinking well and as I have said before, I think this is what is keeping her going. Every day I visit I prepare myself for how she will be whether she will be awake or sleeping. Each day can be so different with her. The last couple of days she has been communicating with me more, but it is just her repeating that she wants to die, why is she in this place, why did I put her here etc., etc. it is so hard to know how to respond and I just wish, and don't want to sound heartless, that this awful journey would end peacefully for her. We all cope in our own way, I just tell mum that we all love her and that we want her to be well cared for now. Does she understand this, I don't think so, but I suppose it gives me peace of mind that I hope that in her own way she may forgive me for not being able to take her home to die. Another day today but I don't think I will get that smile. My thoughts are with you all and so grateful that we have this support from each other xxxx
     
  18. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    898
    England
    Sorry to jump in to add my news to this thread @Emily88
    Indeed it was. Although on Saturday we did wonder if somehow she was going 'to pull through again' she died yesterday. it was indeed peaceful-to my absolute surprise considering all the emergencies and stresses we've had over the years and I am so grateful that it was 'so much better; than I'd anticipated and dreaded.

    Hopefully that might be an encouragement to you Emily.
     
  19. canary

    canary Registered User

    Feb 25, 2014
    4,336
    South coast
    I am so glad that it was peaceful @lemonjuice.
    After mum died I had a strange feeling of combined relief and loss all at the same time.
    Be prepared for a whole load of different emotions - I felt numb for quite some time.
    (((((hugs)))))
     
  20. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    898
    England
    Definitely. I seem to revolve between relief (that all the suffering and waiting for the next emergency is now over. 'practical business-head (just getting on with things on automatic pilot) and overwhelming grief involving lots of tears.

    I was really worried I would be too numb to feel, having anticipated this day for so long and 'grieved' each loss on the way, so I'm really grateful I can still 'feel'.
     

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