Are you told End of life stage?

Discussion in 'I care for a person with dementia' started by totallyconfused, Jul 2, 2018.

  1. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    #1 totallyconfused, Jul 2, 2018
    Last edited: Jul 2, 2018
    Last October we were told early severe. My mother has had a bad year. She's seeing consultant Wednesday. Will they give an indication of where she is at, even a notice that she is in final stages-no matter how long that takes?

    I know they cant say for sure and everyone different but just wondering do they give any indication. My mother is in emotional distress about wanting to go home, having trouble showering/cleaning herself, toilet troubles, finding getting dressed difficult.

  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I wouldn't think so. My wife's been in her current home for just over 2 years and if you'd have asked me to predict who'd still be there and who'd have passed away I'd have been wrong about so many of them, it's impossible to predict in my view.
    I followed a lady down the corridor hanging back as if she saw me open the door she'd try and get out, she walked well and could get aggressive, 3 hours later she died. Another man always stood in the door to his room with his walking frame in front of him like he was on sentry duty, I said goodnight to him one evening, the next day his nameplate had gone off the door and the mattress was gone off the bed, passed away in the night.
    Conversely some of the 6 stone scraps of flesh, incapable of walking, talking or feeding themselves are still hanging in there, somehow.
    I'm amazed how many of the residents who've been moved to the high dependency/end of life unit are still up there despite how bad they appear.
    Two years ago one woman was on end of life care in the unit, she was so bad they got the priest in, one son flew home from a cruise he was on and the other son was brought, chained to a guard (and another one by the door) from prison.
    She's still there now, back up and walking round, I saw her at lunch today and she's not the only one I've seen take to their bed sometimes for weeks only to reappear in the lounge, it's all very difficult to predict.
    my wife has pretty much zero awareness, can't walk, talk, feed herself is incontinent and needs total care in every respect, I don't see that as final stages as other than the AZ she's perfectly health, she could carry on as she is for years given the right care her, mental impairment is pretty much total but physically that isn't any different to any other 65 year old.
  3. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    thank you for replying.

    I think Im still clinging to the hope that we will get a timeline on this-6 good months left, 2 years left etc. I know its too hard to predict, you have given plenty of evidence of that.

    My dad had cancer. There was a plan to fight it. It didn't work but you felt like you tried. With my mother, I feel useless and I hate seeing her like this at 66. I hope shes taken long before she becomes one of those "6 stone scraps of flesh". That might sound horrible but its true for me.
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I never got a timeline for my husband. His dementia progressed to what I would imagine would be described as 'final stages' but he was healthy otherwise. In the end he developed aspiration pneumonia following a choking incident and didn't recover from that. Had he not had that incident he may well have been alive now, almost exactly 2 years later. He was diagnosed 15 years prior to his death and showed symptoms for a couple of years before that. Nobody ever gave me a a suggestion of a timeline.

    I do understand how hard it must be for you. So much harder I would think as she is only 66.
  5. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    I agree that 'endstage' is so difficult to define.

    Even Alz literature when mentioning stage 7/ Severe as being when one's journey is coming to an end splits that last stage into 7 substages all lasting between 1-1 1/2 years.:eek: One of my aunt's was end stage completely immobile unable to do anything for herself and curled in the foetal position for 6 years.

    Here is a couple of excerpts
    . . . .a person in the later stages is likely to experience severe memory loss, problems with communication and daily activities, and greater changes in behaviour and physical problems than in the earlier stages. They will probably rely on others for much of their care.

    There are symptoms in the later stages of dementia that can suggest the person is reaching the final stage of their illness. These include:
    speech limited to single words or phrases that may not make sense,
    needing help with most everyday activities,
    eating less and having difficulties swallowing,
    bowel and bladder incontinence,
    being unable to walk or stand, problems sitting up and controlling the head, and becoming bed-bound.
    It is likely that a person with dementia is nearing the end of their life if they have these symptoms, along with other problems such as frailty, infections that keep coming back, and pressure ulcers (bedsores).
    By that definition my mother would have been considered 'end-stage' for over 3 years.
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    I understand that. My dad has cancer and he has completely forgotten about it. He is 88 years old and very frail. He thinks he is fine but the dementia is getting slowly worse and probably the cancer will make it worse. He is only on palliative care because any treatment will make his dementia worse and the oncologist said the chemo he needs would probably kill him in in his frail state, yet he sits there smiling and says "I'm alright, don't worry about me" We have no timeline at all but I know his cancer is an aggressive one, in fact I think he has done amazingly over the last six months.

    I truly wish he will just pass away in his sleep one night before it starts to get bad for him. He truly believes he is fit as a fiddle. Don't know what else to say but you are not horrible to think like that. In fact I would find it strange if you didn't. It is a natural human emotion to want to spare someone from suffering. I hope things get easier for you and that your mum goes peacefully.
  7. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    My Mum 77 has had so many health issues, I am amazed she is still with us.
    2011 Chronic Lymphocytic Leukemia
    2012 surgery for bowel cancer.. proved to be low grade
    2013 Alzheimers
    2015-2016 many UTI’s, trips to GP & hospital
    July 2016 admitted to a Dementia Care Unit. At this point I would have put Mum at a moderate stage of dementia.
    2017 UTI & mild delirium caused a massive downturn with eating, toileting, dressing, talking, cognition, confusion. She had bouts of agitation, agression &was hallucinating. She had lost 10kgs. ( 23lbs) By Sept 2017 Mum was trialled on Quetiapine an anti pshychotic. By this stage I would have said moderate to severe stage of dementia.
    The Quetiapine worked well and gave her some quality of life.
    March this year another UTI.
    Again aggressive, agitated, drinking & eating little, refusing meds off and on.
    She was admitted to hospital.
    By this stage things were so dire I would have said possible end stage. I was asked about a DNR order.
    Mum didnt eat or drink, or take meds for 4 days straight.
    Once again though she has pulled through, back in her care home with a complete review of her medications. She has simply had statins & bladder meds removed and Quetiapine dose increased slightly. 75mg a day.
    We are amazed at the improvement in Mum, and back to a moderate/early severe stage.
  8. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    I know my dad will go on to the end although I wish he wouldn't. I have never known him to have so much as a cold. He must be incredibly strong. So sad really.
  9. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    It seems more or less the case, that with dementia, the actual 'end stage' remains flexible. The brain is immensely complex and powerful. You see residents seemingly on a downward spiral, at times looking 'deathly' - and yet they turn around as if nothing was amiss. And it is true that people can be active and to all intents and purposes, well. Yet, very soon afterwards pass away. So there is no clear cut answer. Each case is different due to all manner of reasons. In a way, the day-to-day approach is a wise one and perhaps not projecting too far ahead in terms of expectations. But when someone confines to bed and refuses drink and food, despite every effort, that can be an indication. But I think that we, as human beings, will sense that time, albeit reluctantly, if we are close as carer or partner, owing to that intimacy which is not easily put into words. It's a knowing and it stems from deep inside.
  10. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    My mother was in late stage dementia for a long time. Although she had become very thin and apparently frail, her physical health was unusually robust, and to be honest by the time she was in her mid 90s I'd begun to think she might well outlive me. I think even the care home staff had begun to think she'd go on for ever - she'd gone in at 89 and was there for very nearly 8'years until she died at 97.
    When the end finally came, it was all mercifully over in about 36 hours.
    During her long years in the care home I had seen so many other residents arrive, decline, and quietly disappear. There is just no telling.

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