Dad, late stages not eating or drinking...how long?

Discussion in 'ARCHIVE FORUM: Support discussions' started by KateR, Jul 29, 2007.

  1. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    Hello, I joined this forum over a year ago but haven't been back since as I found it too hard to deal with the issues of my Dad having AD, I have been suffering from postnatal depression made worse my Dad's ill health.

    Anyhow, Dad is in the late stages of Alzheimer's. He has been in hospital since March for assessment, ended up with a broken femur and MRSA (but that's another story, sigh...) and two weeks ago we were told that there is nothing else that can be done for him other than keeping him comfortable and pain free. He was transferred to a nursing home for palliative care about 10 days ago and is fading fast, I'm in tears even typing this. He now hasn't eaten for about 3-4 weeks other than the occasional mouthful of food which he usually spits back out, he is also drinking minute amounts very infrequently and is even having trouble taking medication. He has lost so much weight that it is painful even to look at him, is completely bedbound, unable to speak or communicate and is basically an empty shell. It os breaking my heart seeing him like this and seeing the pain my Mum is going through losing her partner/husband of almost sixty years.

    No one will actually come out and say "oh yes he's dying" but it's obvious. Does anyone know, in general/average, how long AD patients tend to live once they have ceased eating and drinking? Any other advice or experiences would be hugely appreciated. I just want to know how long I have left with him although I realise that that is a question no one can answer directly.

    Kate x
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Dear Kate,

    A person can live without food for about a month, without fluids it can be 4-10 days. If your father is already very weak, the time is likely to be shorter rather than longer - depends how much fluid he is actually taking.

    Is his mouth 'furring' - got loads of white stuff in it - happens when little fluid being taken in and is dead skin.
    Is he awake much? I think he is likely to get more and more sleepy with dehydration and as things start to close down.
    Are his feet cold. As the body closes down circulation fails - we were told to look out for blueness of finger and toe nails, mums toes went blue well before her hands.

    How strong are his breathing and his pulse. Mum had a strong pulse until about 12 hours before she died, then it became more difficult to find.

    Kate, on this occasion I can say, I know how you must be feeling. Wanting someone just to tell you what is happening, how long you have left.
    Thinking of you.
    Love Helen
     
  3. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    Thank you Helen for your lovely reply and kind words.

    He sleeps most of the time now or at least appears too, it's almost as if he's drifting in and out of consciousness. His feet are always freezing cold too.

    When I went in this evening the nurse said he's had about 50ml of fluid all day (what's that, about 10 teaspoonfuls?). I can't say I've noticed any furring but his teeth seem to be congealed for want of a better word around where they meet the gums, if you see what I mean?

    We were asked a couple of weeks ago by the hospital about whether or not we wanted him to be resuscitated if he stopped breathing (we have said we want him left to slip away peacefull) and the nursing home asked the same questions last week and also if we wanted him transferred back to hospital etc if he deteriorated further. We were also asked how we wanted him cared for at the end and if we wanted a priest called etc. I just wish I knew how long he had as I can't bear seeing him in this state.
     
  4. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Kate,
    You say that your dad is being given medication - what is that for?
    50ml is very little fluid. Is he able to swallow still. If not food/fluid is likely to go on to the lungs and this causes an infection - the cause of death in many people with dementia.
    Is your dad having his mouth swabbed regularly? It helps to keep him more comfortable, and his lips need to be kept moist to stop them cracking.

    Does your dad seem to be in any pain or discomfort? if he does, they should be able to give him something to help that. If he is not, then try and let go of some of your hurt - as long as dad is not suffering, then it is yours and mums task to support him as life slips away. I know how it hurts.
    Love Helen
     
  5. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    He originally had a patch for pain relief as they couldn't get him to swallow anything, this was changed to something similar to morphine (the name escapes me) a couple of weeks ago but we were told last week that the doctor had taken him off that. They give him liquid paracetamol and also other pain relief when he seems to be in a lot of pain. When he is awake he is very agitated, grasping and grabbing at things that aren't there, moaning and looks as though he is in terrible pain. They did have him on a drip for a while to get some fluids in to him but he was taken off this a few days ago as they were concerned that if his body was not absorbing the fluid then an abscess could develop etc.

    They are providing him with vitamin drinks and protein shakes but as I said he is taking very little of these. I don't know if it is that he can't or won't swallow, but when my Mum was attempting to feed him a couple of days ago it was just making him gag. We have been told not to try and make him drink if he doesn't want too. They don't seem that concerned with him not eating and drinking which I suppose, at the stage he's at, is quite understandable.

    I just feel so bloody helpless and want to do everything I can to make his last days comfortable and peaceful, I just sit there telling him how much I love him, holding his hand and just hoping and praying he can here me and knows how much he means to me.
     
  6. connie53

    connie53 Registered User

    Jul 26, 2007
    6
    Leeds
    Hi Kate

    So sorry to here of your dad's decline. It is an ordeal that is so painful to go through, and you just hope that his suffering will end soon. The only practical help I would suggest is that you could perhaps help with his mouthcare, and dont be afraid to ask the nurses/cares if there is anything else you could do in a practical way. I am sure just being there is a great support to your mum. Take care, my thoughts are with you
     
  7. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    Thank you Connie, I really do appreciate your comments. I do ask the nurses if there's anything we can do and it's usually just a matter of trying to coax him to drink or simply sitting talking to him and trying to let him know we're there.
     
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Your dad

    My dad was in a similar stage towards his death from stomach cancer. It all sounds very sad, but ......oh, dear, but.......it sounds as though the end is near, and all you can do is make him comfortable. Ice pops are a good idea to cool his mouth and give him some fluid. I can't see what else you can do except be with him.

    I wasn't with my dad when he died, none of us were. We were rung to to say he was distressed but "no worries", and when we arrived an hour later he had passed. No worries? I didn't want him to die on his own, but we had no choice. But he was not in pain, that was our consolation.

    Hope you manage.

    Love

    Margaret
     
  9. paris07

    paris07 Registered User

    Jul 11, 2007
    74
    australia
    Hi KATE,
    I am sure your dad knows you are there with him and he hears all your loving words and feels you holding his hand.
    Do not be too hard on yourself , you are doing all you can for your dad just being there with him.

    Thinking of you
    Paris07
     
  10. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    I am sorry that you and your dear mum are having to go through so much pain, so very hard to comprehend. I guess all you can do is just be there with all the love and support, your mum will really need you more than ever before. When my uncle was near his end he went four days without fluids then just slipped away. I know this is a very stressful time, unfortunately, one that we have to face. Take care. Taffy.
     
  11. lovdn2

    lovdn2 Registered User

    Jul 24, 2007
    25
    Been in that position myself, Kate, you are doing exactly the right things he will know you are there..........you are still sharing the love you have for each other.

    Thinking of you at this sad, sad time.

    xx
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Kate, I'm so sorry. But you are doing exactly the right things, sitting with your dad, telling him you love him. He will know you're there, and will be able to hear you. You are giving him comfort in his last days.

    When the time comes, if you can bear to do it, tell him that it is all right to let go, that you will always love him, and you will be all right. That will be such a comfort to him.

    Thinking of you in these hard days,

    Love,
     
  13. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    Thank you all for your lovely words and thoughts, it is much appreciated, I have tears in my eyes just reading your responses.

    I just wish I had had longer with him, although he is almost 78 I am only 35 and in some ways feel as though I have been robbed of my Dad far too early and that my children their Grandad. My little boy is only two and will probably have no memories of Dad at all, at least my 7 year old daughter can remember him and the times they spent together before AD got it's claws in to him.

    I'm off to the nursing home again this afternoon, they are absolutely wonderful there, I couldn't have asked for a better place for him to be, especially after the ordeals we had with the hospital (a different story altogether).

    I have a feeling that it won't be long now, as someone said it's time to just let him know that it's okay to go and let him slip away peacefully.

    Kate x
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,735
    Kent
    Dear Kate,

    Please feel strengthened by all the positive vibes coming your way from everyone on TP.

    I hope you won`t have to witness your dad enduring much more suffering, and can take comfort from knowing you are doing everything you can for him.

    Love xx
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Sorry I can't answer your question in how long .

    Just want to show my support that Sylvia put so lovely

    xx
     
  16. Sunlight

    Sunlight Registered User

    Feb 12, 2007
    55
    I don't have any words of advise but just want to let you know that you are in my thoughts.
     
  17. Tina

    Tina Registered User

    May 19, 2006
    420
    Thinking of you Kate...I've been there too, not with my dad though.

    At this stage, all that's important is that you're there, that dad is surrounded by love, which he clearly is, and that he's comfortable. If he's not taking any more food or fluids, don't get upset by it...he won't feel any pain or discomfort from that. When we were at this stage with my nan and aunt, we were concerned they might be "starving to death" or dying of thirst...the docs told us (there is research on this as well) that as the body shuts down, the brain stops sending messages of hunger or thirst.

    Make him comfortable, stroke his face, hold his hand. He sound to be in a lovely home, so the staff will ensure he is in no physical pain either.

    The others have said it all. Tell him you love him and, when you're ready, tell him it's ok to let go as well. I know it's hard...we don't really want to let go, do we.

    Thinking of you and sending you strength and courage for the days ahead.

    Tina x
     
  18. KateR

    KateR Registered User

    May 9, 2006
    15
    Newcastle upon Tyne
    Once again thank you for all your kind thoughts and words.

    I've been with Dad most of the day and this evening the priest came to give him communion/last rites. We were told that his death is imminent and won't be long at all.

    I'm not in a very good place at the moment, I'm in pieces. I will keep you updated though.

    Kate x
     
  19. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Shall keep you in my prays xx
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,735
    Kent
    Take care Kate. xx
     

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