1. Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

    As a carer for a person living with dementia, the needs of that person will often come before your own, and this can mean that you don't always look after yourself.

    However, it's important for both you and the person you care for. But how do you do that properly?

    Our next expert Q&A will be on looking after yourself as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He'll be answering your questions on Friday 25 January between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

End stage but not End of Life?

Discussion in 'End of life care' started by Linbrusco, Jan 7, 2019.

  1. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,474
    Female
    Auckland...... New Zealand
    I would have thought Mum virtually immobile, refusing food for past 4 weeks, a few tspoons here and there of porridge, surviving mainly on Fortasip when she will drink it, we would be looking at End of Life care?

    Dr we consulted yesterday said not yet? Mum could be like this for some months but of course hesitant to say a year.
    So Im confused!

    So is end of Life Care when the PWD simply refuses all food & fluids? Comatose? Pneumonia or Aspiration Pneumonia sets in?

    GP has ordered Fentanyl patches for pain relief for her lower back which she will start today.
    Paracetamol liquid because of the taste is difficult because they cant mix it in food as Mum wont eat. Codeine & Antiflammatories the same, plus would probably upset her stomach with no food.

    Mum was quite alert yesterday, smiling and even laughing at things said, and eyes open much of the time and there were words here and there we could understand.
    Quite a turnaround compared to 3 days ago, when she was awake but kept eyes closed, talked complete gibberish, hallucinating, and looked at deaths door..... but I beleive that this can often happen?
     
  2. Jessbow

    Jessbow Registered User

    I dont think its really definable. The end stage could go on some time. it really only becomes ''end of life care'' when pretty much within days of death ( In my experience anyway)
     
  3. canary

    canary Registered User

    Feb 25, 2014
    7,950
    Female
    South coast
    It happened to me too Lin.
    I was told that I was looking at the end with mum, posted on here, got a shed load of support and then she bounced back!

    Ive since discovered that it is quite common. Yes, I think its once they stop eating and drinking anything, for whatever reason, that they are considered end of life (but even then they can start eating again and bounce back)

    Id guess your mum is at end stage dementia, but that can go on for a long time - or perhaps not.
    Its the uncertainty thats hard
     
  4. Beate

    Beate Registered User

    May 21, 2014
    10,915
    Female
    London
    OH was in end stages for quite some time but he was more or less healthy, with a good appetite. He wasn't mobile anymore, nor did he speak, but he wasn't in danger of dying. That only came when he contracted pneumonia, and the antibiotics did not help him anymore. That's when he was put on end of life care, which is basically painkillers.
     
  5. Timeout

    Timeout Registered User

    Feb 10, 2012
    198
    This is the stage we are at with mum too. She’s been immobile, bed or chair bound, doubly incontinent, unable to say more than one or two words for almost 3 years now. She eats a good, soft diet though so never loses weight and remains fairly stable. She did have a huge nosedive over the summer with a UTI that really knocked her for six, she had to be catheterised and the build up of toxins in her system made her skin breakdown but she has bounced back. She has been on a Butrans patch since which does make her more sleepy and some days we visit and she’s sleeping the whole time and looks like she’s close to the end, other days she’s more alert, laughs and smiles etc. She’s been like this at this lower stage for 6 months now but seems stable again.

    I’ve a feeling this could go on quite a while, I honestly don’t know how she does it, she must have quite a fighting spirit. Sometimes I wish she’d give up though, as awful as it sounds.
     
  6. Misstep

    Misstep Registered User

    Oct 7, 2015
    53
    South Wales
    Is she still at home? My step-father's GP said he wasn't EOL 18 days before he died despite us believing he was (cancer in his case) and I've long had a sneaking suspicion that the reason was that they didn't want to pay for district nurses to come in. Mum, on the other hand, is in a home & was diagnosed EOL when she wasn't eating almost a year ago. She suddenly started eating again & has only recently stopped again. She's now on CHC
     

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