1. Brogues

    Brogues Registered User

    Apr 13, 2014
    I'm at a bit of a low ebb, mums not walking is loosing her talking and is now sleeping alot PHEW because I just can't see any quality of life for her, she is just existing, it's really really sad we go to see whats left of her but I just can't get my head round how much care is based on keeping her locked into this existence

    Sorry that probably makes me sound heartless - just very hard visiting such a reduced person wishing her suffering could be over. She is also on Respiridone for extreme behaviors and anxieties hence why I say she is suffering.

    Am I hte only one that feels like this?
  2. Ash148

    Ash148 Registered User

    Jan 1, 2014
    Dublin, Ireland
    Hi Brogues, no you're not the only one, and it's a perfectly rational thought, even if it doesn't make any difference to the ongoing reality. Sorry can't be any more help. At a bit of a low ebb these days myself.
  3. Emily M

    Emily M Registered User

    Jan 20, 2015
    Re: Quality of Life - Feelings of Helplessness and Guilt


    You are not heartless. I think your feelings are very normal. You obviously feel very helpless in this situation and probably even guilty that you can't do more and guilty that you want everything to be at an end and so alleviate her suffering. But is she really suffering? I assume that she is in a Care Home being well looked after, possibly in perhaps a dream-like state for periods of time. Have you noticed a change in her behaviour since she has been on Respiridone?

    The Alzheimer's is not so advanced in my mother who is living at home with my step-father. She also is on Respiridone for aggressive behaviour. Since this has been administered regularly her memory has got worse and she seems more physically frail because she is not getting the exercise she used to get. She is much calmer though and this enables my step-father to cope. Unfortunately I live some distance away, but still feel guilty that I am unable to visit more. I worry that next time I visit she won't know me, but I telephone nearly every day. I dread what she is going to be like in the future and that she may go on years just deteriorating.

    It is the long goodbye.
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    No, you're not the only one. My mother is 96 with advanced dementia. She is in a pitiful state, with zero dignity or quality of life. She does not know any of her family and hardly ever responds at all. She is unable to take an interest in anything - hardly ever even wants the chocolate I always take in, and that was one thing she always used to enjoy. I wish she could be released from it all, and I don't feel bad for feeling like that. I know her former self would agree one million per cent. To me it is very cruel that she has to go on and on like this.
  5. Sue123

    Sue123 Registered User

    Aug 30, 2014
    I can understand how you feel.
    I live with my Mum and all she does all day is sits in front of the TV. Hardly much of a life!
    When i was a child she always had a go at my Dad for just sitting in front of the telly all day.
    She also sleeps alot on weekends (when i dont get her up). 1 day she was in bed for over 12 hours. Is this normal??
    She has no interest in anything & she struggles to walk so i just dont know how to fulfill her day :confused:
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Hi Brogues

    No you are not wrong. Lots of people have these feelings and it's good to be able to 'talk' about them. You have always fought your Mum's corner so I, and others, know that you only want the best for your Mum. When I posted that Pete had died I named the thread 'Pete's long goodbye is over'-and that's what it was. It's a terrible illness-for both sufferer and carer. All we can do is wait and watch and fight for the best care they can have.

    You have my sympathy


    Lyn T XX
  7. Sweet

    Sweet Registered User

    Jun 16, 2014
    Hi brogues
    I'm in the same situation with my mum, she's picked up yet more infections,... so antibiotics. Swallowing is difficult, ...so now on puréed food. She can't lie comfortably in her bed in CH..too weak too walk now, new drug this week for recent breast cancer...she's 92, enough's enough.

    Meeting Dr on Friday to discuss no more meds.

    It is really sad, just locked into this round of care. The 'well' mum I had would be totally totally horrified at it all!

    So I get your low ebb x
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    My mother just used to sit in front of the TV all day, too. I tried all sorts, but the answer was always, 'I can't be bothered.' And if I ever tried to push anything, even gently, she would just get fretful or in a tizz.
    If she is reasonably contented, then personally I would try not to worry about it. Sometimes I think it's just the case that anything more demanding is too much for them.
  9. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hi, Im walking the same path as you and feel exactly the same. Its no life for anyone, and it hurts so much to watch.

    I hope knowing that you are not alone helps a little. There are many here walking the same path. We got your back. Keep posting as it really helps.
  10. Daisysmum

    Daisysmum Registered User

    Jul 25, 2013
    No - you are not alone. I believe if most family carers were able to be honest they would say just the same. Our mum has advanced vascular dementia, and has been in nursing care for over 2 years, she is incontinent, has no speech, has to be hoisted in a full body hoist, needs feeding support and has no interest in anything. She does not know her family.

    Mum believed in euthanasia and while that of course is not going to happen it seems sad that her life is being prolonged with antibiotics etc but for what purpose? We love our mum very deeply and don't want to lose her, but equally we don't want her suffering to continue.
  11. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    Yes, we feel the same way but what's the alternative?
  12. Navara

    Navara Registered User

    Nov 30, 2012
    I agree with everything that's been said.

    To me it often feels as though our poor relatives simply exist to keep other people in employment! As they get progressively worse the cost of their care keeps increasing so they are in fact penalised for having this dreadful illness while the nursing establishments are just laughing all the way to the bank. :mad:
  13. Daisysmum

    Daisysmum Registered User

    Jul 25, 2013
    I can't see any alternative but just to keep on caring and supporting our loved ones through this dreadful disease.

    I feel it may help though if those of us who love and care for someone with dementia expressed honestly how we feel, and more importantly what they would say if they could; that prolonging their suffering is not promoting quality of life, nor is it really prolonging life - rather it is prolonging death.
  14. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    Well said Daisysmum.

    We need to be honest on Tp as this disease is dreadful.
  15. drmclarke

    drmclarke Registered User

    Feb 25, 2013
    York UK
    Oh Navara how, how true - and bravely said!
  16. cf1611

    cf1611 Registered User

    Apr 16, 2014
    No you are not alone, I felt exactly the same as I watched my mother suffer over the past two and a half years, she had not quality of life, had repeated infections and lost her dignity. A few days ago she lost her hard fought battle for life and it is a blessed relieve, even though at the moment it hurts so much I know that she is now at peace and I would never want to wake her to suffer again.
  17. Navara

    Navara Registered User

    Nov 30, 2012
    So sorry for your loss but we are all thinking the same thing as you.

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