1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Walkingwithbluebells

    Nov 8, 2019
    3
    This is my first post here - my lovely grandad (who has always been more like a dad to me my whole life) is close to the end. He has had dementia now for 8 years. In that time I have helped to care for him at home and carried the guilt of being the one to say he is not well enough to come home after a hospital visit with pneumonia (though I still believe he had another mini stroke). He has been subjected to abuse in a care home, sectioned to a hospital 78 miles away fom us and then eventually 3 year ago came to live at a wonderful care home within our city. I was told 4 weeks ago he would be expected to pass away within 2 weeks. Then he perked up. Now we get the call that he has now not able to tolerate food and we have to decide to now feed him or to carry on and risk infection. Over the last two years I feel like my heart has been through it all. I am worn. I want this torture and pain to be over and I want my grandad back. I feel like I function purely as a mum for my 2 year old daughter (and I don't feel I'm being a great one at that) and to try and hold my nan together. People keep telling me to prepare for the end but how can I? I just want to get off the rollacoaster of emotions. I don't want to lose him but he is already gone, he is at a point he never wanted to get to and I just want him to go peacefully where he can rest and not be in pain.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    This is a very painful period in caring for a loved one. @canary puts it best “ the person is not dying because he stops eating but stops eating because he is dying”. I held on to that recently when my husband went through this stage of not eating and losing weight dramatically. To do anything unnatural like peg feeding would be cruel and it is kinder to allow him to die with as much dignity as possible.
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,946
    My Dad is in a similar position to your beloved Grandad. All medications apart from pain relief ( Butec patch & oromorph ) have been stopped, Dads unable to feed himself & sleeps 22 hours out of 24.

    All my Dad wants at his end of life care is not to be in pain & dignity. So I cuddle up to Dad, listen to his beloved classic fm, grieve the loss of this amazing person in my life; & wish for a peaceful transition.

    it’s hard to watch a loved one slip away, hold his hand speak to him. Dad will gently squeeze my hand with his thumb - the lightest of touches. Even that wears him out. This is precious time together, & a natural art of life.

    I’m sure your Grandad would tell you life is for living, so by being the best version of yourself you will be honouring your Grandad & all he believed in. He believed in you ... as does your daughter.
    I hope you find some comfort & a new pathway to get through this difficult time, but acceptance of life having a finality isn’t giving up. It’s part of grieving & being still able to love your Grandad through his time left with you. (((((((Hugs))))))))))
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,788
    Female
    South coast
    (((((((((((((((((((((((((((((hugs)))))))))))))))))))))) @Walkingwithbluebells

    I am so sorry to hear about your grandad. My mum stopped eating after a fall broke her hip and she passed away in her care home with dignity and surrounded by love. It was two and a half years ago now, but looking back it feels like the best possible outcome.

    We none of us want to lose our loved ones, but dementia only goes one way. As your grandad has now stopped eating, this because his body is slowly shutting down and the body no longer requires food. He isnt going to die because he has stopped eating, he has stopped eating because he is already dying. Medics etc will often consider things like a feeding tube or a PEG, but just because you can do something it doeasnt necessarily mean that it is the right thing to do. Sometimes you have to ask your self - is doing this extending his life, or merely prolonging his death?

    I do hope that you can gain some peace in all of this.
     
  5. Pete1

    Pete1 Registered User

    Jul 16, 2019
    252
    Male
    #5 Pete1, Nov 8, 2019
    Last edited: Nov 8, 2019
    Hi @Walkingwithbluebells, it is very tough to deal with, it is difficult to determine the duration, and all you can hope for is that your Grandad is comfortable and well cared for. From what you say in your post you have given your Grandad (and Nan) wonderful support over the years in his time of need, and continue to do so, even though with having to look after your little girl you must have felt pulled all ways. It sounds like you are the glue trying to hold everything together, which is really stressful and emotionally draining, whilst trying to continue with 'normal life'. Stay strong.
     
  6. Lirene

    Lirene Registered User

    Sep 15, 2019
    140
    Thinking of you all with prayers xx
     
  7. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,339
    Nottinghamshire
  8. Walkingwithbluebells

    Nov 8, 2019
    3
    Thank you for all your supportive replies.

    @DesperateofDevon I send you lots of love and strength. Your message made me realise that granddad would not want me to be the way I am and that I really do have to be the best version of myself for him. I saw my GP about something else earlier this week and broke down. I got support and they have referred me to cruse for some help to deal with some feelings of guilt I still hold onto. Grandad is still here, still holding on though is getting closer to the end now. I hold onto the fact that he will be at peace when the time does come.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,788
    Female
    South coast
    (((((((((((((((((((((((((((hugs)))))))))))))))))))))) @Walkingwithbluebells

    It can be amazing how long the process takes. My mum went 17 days with no food or fluid.
    Im glad you have got some support for yourself. At the end you just have to let them go
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,946
    Be kind to yourself. ((((((((((()hugs(((()))))))))
     
  11. Walkingwithbluebells

    Nov 8, 2019
    3
    Grandad passed away Thursday afternoon, he is finally at peace. We had a call Wednesday to say he was no longer handling any medication and we all spent a long time sitting with him, cuddling, listening to his favourite music and talking. He was awake and trying to speak which was unusual. The weather turned awful Thursday in our area and I decided to spend the morning with my daughter painting and watching films and planned to leave my daughter with my husbands family to go to grandad while she napped over lunch. An hour before I planned to leave it became evident that I was not going to get there. All roads to the home were flooded and impassable. I thought I had figured a route then that route closed due to flooding too. We resigned ourselves to trying again Friday morning and then we got the call. He had gone and it had happened fast before they could call us to get there. Its almost like the he chose the moment that we could never possibly get there. My heart is broken but I know he is now free.
    X
     
  12. Kariwan59

    Kariwan59 New member

    Nov 17, 2019
    3
     
  13. Kariwan59

    Kariwan59 New member

    Nov 17, 2019
    3
    I am so sorry for you, just remember to look after you too, of course you want your grandad back you must have happy memories of him, keep those memories that you have and remember you are doing an amazing job. I pray he has a peaceful ending and you are ok.much love to you and hugs xx
     
  14. Moggymad

    Moggymad Registered User

    May 12, 2017
    411
    Female
    I am sorry for your loss @Walkingwithbluebells. My mum died recently. All the family were with her waiting for the inevitable end. They decided to pop to the hospital cafe for a quick breakfast leaving me & my sister alone with mum.They hadn't been gone long when we noticed mums breathing changing & she slipped gently away. Sometimes as has often been said they wait until people leave the room. Console yourself that your grandad passed in his own time. You didn't have to be there for him to know how much you loved him. He would already know that. Be gentle with yourself now.
     
  15. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,941
    Female
    Dundee
  16. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,339
    Nottinghamshire
    I’m sorry for your loss @Walkingwithbluebells

    My dad went unexpectedly and we weren’t able to get there in time...as you say - your grandad is free now.
     
  17. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,651
    south-east London
    My condolences on your loss @Walkingwithbluebells.

    I am glad that you were able to see your grandad on the Wednesday and that during that time you were able to cuddle, chat and enjoy music with him - that is a lovely memory for him to leave you with.

    Wishing you strength as you move through the difficult days ahead.
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,946
    so sorry for your loss, take care of yourself & cuddle that little one tight! xxx
     

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