How long does 'late stages' last?

Discussion in 'End of life care' started by Buddha, Sep 14, 2018.

  1. Buddha

    Buddha Registered User

    Feb 20, 2012
    Hello all. Feeling totally overwhelmed and lost. Mum was diagnosed 7 years ago with Alzheimer's. She's 81, in hospital at the moment and no-one can tell us anything about her prognosis. We're currently appealing a CHC decision (She was refused), looking at long term care, and are feeling utterly lost in the process. When people describe Mum's condition, health professionals say 'Could be months, could be years'. Does anyone have any thoughts about this? We love our Mum dearly but watching her disappear is part of our lives now-heartbreakingly so of course-but how long does she have to live like this? I am sure I am not alone in thinking this-what are people's experiences of living with the unknown, the 'could be months, years' ? Thank you.
  2. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    Hello @Buddha, unfortunately what you have been told is true. Like so many other aspects of dementia, there is no certainty.

    My wife hasn't reached that stage yet so I don't have actual experience and maybe others will be along later to tell of their experience; or you may find some answers in the sub forum you can reach by clicking this link

    May you and your family have the strength you need to get through this difficult time.
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im afraid that "It could be months, could be years" is simply an honest answer. There is no way of knowing.
    All you can do is deal with what its like now and not look too far ahead. It is impossible to plan for dementia.
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Again, I must iterate it is an honest answer. My mother didn't speak for several years before she died and she was wheelchair bound for the last 10 years of her life.

    If it is any consolation to you, my mother was quite serene at the end. The first several years were horrific, as she was violent and aggressive, both physically and verbally. As she lost awareness, she became calmer.

    Is your mother reasonably settled and content? If she is, that's a blessing and I feel the most we can ask for.
  5. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    As others have said prognosis is difficult especially if there are no comorbidities.

    Quite often the end is accelerated by complications such as aspiration pneumonia, or recurrent UTIs leading to kidney failure.
  6. Buddha

    Buddha Registered User

    Feb 20, 2012
    Thanks all for your response. Much appreciated.
  7. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    I would say it all depends. It depends on the type of dementia she has. It depends on whether she has any other illnesses.
    My poor mum had several seizures back in December last year & had a fresh CT scan.

    She has mixed dementia, mainly vascular & Alzheimers. I asked the consultant then for a prognosis & he said weeks & months - rather than years & months.
    My mum is now in a care home & is deemed to have no capacity. She has declined since then but has her 90th birthday in 2 days. I wonder if she is hanging on for that. Who knows?

    My mum also has heart & kidney disease, it’s very likely that she will have a stroke or a heart attack & a DNR is in place. Although she can still talk, her memory is shot to pieces, she can only walk with a frame, she is becoming more & more incontinent both ways. It is sad, very sad.
  8. Buddha

    Buddha Registered User

    Feb 20, 2012
    Thank you so much for your response. I am so sorry to hear about your Mum. Hope you can have a meaningful celebration with her on her 90th. Sending strength and thoughts. x
  9. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    Thank you @Buddha to be honest I am quite surprised that she is still with us. I can’t believe that the large seizure she had didn’t finish her off completely. I think if she had gone back to live at home on her own then she would not be here. Being in a care home had probably increased her life expectancy. X
  10. thebaglady

    thebaglady Registered User

    May 14, 2017

    My husband has lived in a care home for five years and his condition, mixed dementia, has deteriorated recently to the point where he is almost unable to swallow and has many other complications after a serious stroke 15 years ago. His care is second to none and the compassion shown by his carers has to be seen to be believed, I cannot praise the staff and the medical team enough.
    I believe that I, being the person that I am, have deluded myself for years into thinking that my husband's health will improve. With help he is eating very little, spits out his medication and has lost all interest in everything. To prevent aspiration pneumonia it has been suggested to me that alternative methods of feeding be administered; a Peg, a tube through the nostrils the medical term I don`t know, or basically to let him eat what he can and presumably fade away with some dignity. A carer at the home has made me aware that a district nurse gives IV treatment at night, this is not a nursing home, but I was unaware of this. This carer who had nursed her own husband at home , told me she had resisted all of the options I mention for the sake of dignity, and she said that I could too. Instinctively I don`t want my husband to suffer any more indignities in order to prolong a life with no quality.
    I would like my husband to be comfortable, no more injections or drips, no more dressing to sleep all day slumped in a chair or to be force fed.

    Writing this has certainly helped me and I hope this has been of some help to you too.
    Talk to the professionals and follow your heart, you are not alone.
  11. frmarcus

    frmarcus Registered User

    Sep 4, 2016
    Hello Buddha and all: I share your bewilderment and wish you and your loved ones as well as possible in the circumstances.

    My dad - 80 - has Alzheimer's and has been in a nursing home for just under two years, having had the diagnosis about five years. He was admitted to hospital yesterday with a chest infection - which we all probably know is the single biggest cause of death for Alzheimer's sufferers 'cos of aspiration. He's on antibiotics and has no compromising weakness other than Alz (he's always been physically healthy). He's lost much weight in the last few months and his swallowing is slowly fading. I know what the end will look like but am conflicted: I don't want to lose him yet as I think he still recognises close family and I have no reason to think he's suffering and in pain - at least physically.

    The hospital dr's advised that the visits should happen now, I think out of caution that he will die, but I'm hopeful that he'll pull through - though I know there's never a good or better time to lose one's parent than now... I live 150m from my mum (he's in a hospital near her) and am travelling tomorrow, having got the news to visit soon today. It's the suddenness: I saw him last week and he was OK, if in gentle decline, then he gets this infection...

    I share the sense that one just doesn't know if the end's arrived or whether a setback's a blip - and with drs it's a guessing game too.

    But I do know that, as with thebaglady, nutrition is soon going to become an issue, which is so miserable. He can still manage pureed food, can keep his head just about up, and isn't bedbound, though lost any mobility several months ago. But the prospect of him being artificially fed fills me with concern and a sense that that is the end... There is a DNAR in place, and IF the kinder thing for him is that he goes before needing it, I hope he does, as much as it pains me to say it.

    God bless you all,

  12. Cazzita

    Cazzita Registered User

    May 12, 2018
    Yes, God bless you all who are going through this. xxx
  13. malengwa

    malengwa Registered User

    Jan 26, 2017
    Mum went from mud stage to late to end of life to death in about 4 months. She had cancer and repeated UTIs. I was relieved in the end as many of us are.
    The waiting game is awful, the should I shouldn't I is awful, the do I risk a holiday is awful, the what will iisee today is awful, so for mums sake I was glad her journey was very short.
    I wish everyone still there, strength to take each day as it comes but also be kind to yourself too.

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