1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    My dad has had Alzheimers for 8 years and has been in permanent residential care for 10 months. Over the last few days he has lost the ability to swallow - food and fluid - and is now receiving palliative care. At the home he is in they have told us that it may take 2 weeks for him to die. As if this disease was not cruel enough - this seems too much to bear. As he has lost ability to communicate we do not know if he is in distress. I live a 3 hour drive away and have come home to be with my children but feel so bad to have left him in this way. Just wondering if anyone faced similar?
     
  2. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    I have phoned my dad's care home this morning and there is no change. This will be his 4th day without food or drink. I am so distressed that his struggle continues.
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,860
    Female
    Scotland
    My brother in law died in similar circumstances although the family took him home to die. He died in two weeks and they saw no signs of distress. His wife and children felt it was the best outcome given the horrors of this illness.

    Good thoughts for a peaceful ending.
     
  4. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Elaina-I've just posted on your other thread about communication-but here is my take on if your Dad could be in distress. It's often written on TP that agitation can be a sign of distress or pain; the Carers will know what to do if there is any sign. They will phone the District Nurse or GP and painkillers will be prescribed which can be used in the form of a patch. Try not to think too much about the timescale-your Dad will pass away when he is ready. You have said your goodbyes-you will have no regrets. Be with your children -I'm sure your Dad would want it to be that way.

    Love

    Lyn T XX
     
  5. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    Thank you so much for your kind words. I am racked with guilt that I am not doing the right thing by him. My mother is there and she understands that I need to care for my daughter but I don't know if I am doing the right thing. They have said that they will give him patches. He is not showing many signs of distress according to the carers and my mother. Maybe you are right to say not to think about the timescale but it just seems to add to the cruelty of the journey he has to make.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    The waiting and not knowing is the hardest bit. My FIL got to this stage and it took several weeks for him to pass away, but when the time came the nurses knew and contacted his three sons so they were all there for his final hours. I hope the same thing will happen to you.
    Please dont feel guilty, you have your family and cant put everything on hold indefinitely.
     
  7. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    Thank you. There have certainly been many horrors during his illness. But this is beyond horror. I can't understand why life has to end in this way.
     
  8. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    I felt I could not stay indefinitely. I am an only child so have no one to share this with as far as taking it in turns to be with him. So hard.
     
  9. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    220
    North East
    When my Mum reached this stage she died in just over a week. I am an only child too and I couldn't bear to sit with her indefinitely. My Dad also had dementia and I took the decision to make our visits short. The carers were marvellous. They deal with this regularly but made us feel like we were the first family to go through this. As it happened I was there when Mum died. I had called into the home to see how things were, kissed her and as I was leaving the room she died. It was a special moment as I felt she had waited to say goodbye. I felt guilty that I hadn't spent days and nights with her but when my husband's mother was at end of life my Mum said I shouldn't feel guilty about not being there as there is not much pleasure in watching someone die. Her words stayed with me 8 years later and I felt she would forgive me for not being there all the time. Thinking of you. Xx
     
  10. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    #10 elaina, Aug 11, 2015
    Last edited: Aug 11, 2015
    Thank you for taking the time to write this. It is helpful to know that I am not the only person that has not been able to stay all the time. the last conversation I had with my dad when he was still able to talk, he said
    "What's your name? You're lovely"
    Although it distressed me at the time that he no longer knew who I was - now those words just seem so poignant and I am clinging to them.
     
  11. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    My mum is with my dad and I have just been able to tell him again how much I love him through a mobile phone. Could hear his laboured breathing. Just so so sad.
     
  12. betsie

    betsie Registered User

    Jun 11, 2012
    253
    My dad lasted 19 days once he forgot how to swallow. He was placed on a syringe driver to give 24hr pain relief but still needed extra morphine injections at times. He also developed very bad sores on his ears and feet even though he was turned every few hours.
    I can say this was the worse time of my life and can only wish you strength to get through this. Make sure he has plenty of pain meds and is being turned every few hours.

    On the last day I knew he was going to die that day. His breathing was like gasps, he had been very sick ( yellow bile) and his eyes had rolled back in his head. His hands had also gone very purple coloured.

    When you visit hold his hand, moisturise his lips and talk. I used to read the paper to my dad. I also told him every time I left that he could go, he had fought long enough and that I loved him. He died about half an hour after I left the hospital to pick my daughter up from school so don't beat yourself up for not being there every minute of every day.

    I hope his final battle is over soon. Stay strong and be kind to yourself.
     
  13. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    Oh my goodness. They have told me that he is likely to change colour as he nears the end. When I was with him at the weekend I just kept telling him to let go and be in peace.
    Your experience sounds terrible but I am grateful to hear from people that have been through this process. x
     
  14. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    This is how my Mum left... peacefully.

    When my Mum died last February, she'd been in bed for about three or four weeks, gradually eating less, drinking only when prompted. She would wave her boney little arms and legs about...thank goodness for pyjamas...most of the time her modesty was protected!;) The only time she was in pain, morphine was provided quickly by the GP. We had been through a couple of rehearsals with her, from which she recovered, but this time it was not to be. I sat with her, I talked to her, I read my book, I played Candy Crush...luckily I lived nearby so I was there 3/4/5 times a day, just a pop in, feed her a drop of tea from her sippy cup, ask the carers for cream for her heels and the tops of her insteps to stop them rubbing. I laughed with carers and life went on around her.
    On her last night,when I left about 10 pm I said, as always,..." Night Night God Bless" then I went back and kissed her and said " Love you Mum, now let go".
    Her breathing was shallow, she was Chayne- stoking...breathing shallow and with gaps between the breaths and then a bigger breath again.
    She died at 06:00 on the 20th February.2015...I might have got there in time, I don't know...but it didn't matter, what did matter was that she died peacefully.

    She was lucky...I sat with Dad when he fought for every breath he took...I know which end I'd prefer.

    Just spend what time you can with your Dad.....and enjoy being with your family when you are apart.
    Do Not feel any guilt if he dies without you being there.... It was not meant to
    be. If you are together...that too will be as it was to be.

    So if you've ploughed through this, congratulations:rolleyes: but take comfort...you have done your best.

    Thinking of you....Maureen.
     
  15. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    Thank you Maureen for sharing your experience. So helpful for me to hear from others.
    If I am very honest, I feel completely torn. A part of me wishes I could be there more for my dad. The other part - a very selfish part - is relieved that I cannot see him deteriorate further. I found seeing him at the weekend a harrowing experience. I am left with an image in my head which is hard to deal with. I got home and got my wedding albums out so that I could see photos of him from happier times - a day I KNOW he was happy. It is this selfish part of me that I feel so bad about.
     
  16. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    Another day without a phone call in the night to say my dad no longer has to struggle.

    I am taking some comfort that my oldest son who is 22 is making a trip from Yorkshire to the Midlands to see him as he has a day off work.
    But please please may it not be too much longer.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    (((hugs)))) eliana.
    Im listening and I know there are lots of us here holding your virtual hand
     
  18. elaina

    elaina Registered User

    Aug 10, 2015
    41
    Somerset
    It is now a week for my dad without food or water and still he struggles. His breathing has changed but I fear that this may still go on for a while yet.
    I just don't know what to do with myself.
     
  19. Soobee

    Soobee Registered User

    Aug 22, 2009
    2,734
    South
    I am sorry Elaina. So many of us have been in this situation and it's an unbearable one.

    I wish your dad a comfortable peaceful death and I send you strength and hugs x
     
  20. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    so sorry to read your story Elaina. It is a terrible time and you must not feel bad or guilty about anything. It is so tough on everyone. I lost my Dad last November and he was like a skeleton when he passed - not my Dad at all. It was an awful picture in my head, but now we have photographs of him as he was, and I look at them every day and this is how I can remember him now.
    Wishing you strength in the time to come. And a huge hug. Take care. My thoughts are with you xx
     

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