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 of life nutrition

Discussion in 'End of life care' started by BrianSausage, Jan 8, 2019.

  1. BrianSausage

    BrianSausage Registered User

    Nov 2, 2018
    Hello again

    Things have professssd very slightly with mums journey.
    She is now on constant lorazepam which is given daily in two doses. This has meant that the nurses do not have to give her injections of medazolam so frequently, as she is calmer.

    When I visited today she told me she had seen my grandmother and that she looked the same. I gave her my permission to go to her.

    My frustration is with the NH regarding eating.
    She is eating very little. Today she had two teaspoons of her lunch, that’s the first thing she has eaten since Sunday lunchtime.
    My brothers and I have said our goodbyes and we wish her to slip away peacefully now.

    However the NH seem intent on giving her nutritional drinks and are always pushing her to have one more mouthful of food. I have said no to the drinks and if I’m feeding her, once she has had enough I stop. I don’t try to persuade her to have more.

    We know she’s dying, and if I thought that by giving her sugary drinks or energy drinks or by keeping her eating, it would keep her alive and she would have a good quality of life, of course I would want this for her.

    But, she has dementia and Parkinson’s, she has been bed bound since Sept and now weighs just 7 stone. Doubly incontinent, in fact she has most of the end of life signs. She has no quality of life. It is not my mum lying there.
    I am sorry if I sound cruel, I just want my mum to be at peace.
    Should I speak to the NH and ask them to stop pushing?
  2. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    Oh brain..i could off wrote this..i posted on dealing with difficult feelings..my mum is also at this stage..nurse came today..now been informed not force food or drinks...one off my brothers trys to feed mum constanly..i have now sent a text to sibling stating what nurses hsve said. Offer but do not force..wish you prayers and this aweful journey!xx
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Brian, I would encourage you to sit down with whatever members of staff you feel most comfortable with, to discuss your mother's care going forward. It is clearly weighing heavily on you.

    Your decision will be a good one, from a place of care and concern for your mother's best interests.

    In my opinion, no, you don't sound cruel or terrible. I often wish my mother would just quietly die and I am sure I am not the only one who has had these thoughts. I just don't want her to suffer.

    Wishing you strength at this difficult time.
  4. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
  5. Misstep

    Misstep Registered User

    Oct 7, 2015
    South Wales
    I've got the same problem. They feed her in her room & encourage her to eat. I've kind of accepted that they probably should encourage her, but I wish she'd refuse. You're not cruel. My Mum talked a lot to me in earlier years about the difference between life and existence and asked me to ensure that she was kept comfortable, rather than kept alive when she reached the stage of existence, which like yours, she's at. I guess I think that the food she agrees to take is keeping her comfortable. I gather the tranquillisers can suppress breathing, so maybe they'll help her to slip calmly away. Sharing your pain
  6. Ginny Hendricks

    Ginny Hendricks Registered User

    Feb 18, 2016
    We have exactly the same problem: my mother's receiving end of life care in a nursing home, fast-tracked from hospital. She hasn't walked for six weeks, will never go home again and has trouble swallowing, but the carer we spoke to today was pleased because she'd eaten more than usual with a lot of persuasion and being told that she 'has to eat'. I don't want to upset the staff but equally I don't want her to eat more than she really wants; when we feed her, we stop after a few mouthfuls because she says that's enough. I think I'll have to say that, while offering food is fine, of course, she shouldn't be made to feel that she must eat more, especially as her fluid intake is low. I really hope she'll die soon and escape this terrible limbo. Good wishes to all.
  7. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    Gosh we are all in this same limbo period , wanting the best for them but wanting them free of this horrible illness mums not eaten now for two days , zero mobility and asleep , it’s almost like a hibernation mode but I can see fading so very sad . Thinking of all at this time ❤️
  8. Ostrich63

    Ostrich63 New member

    Jul 9, 2018
    I join you all in the waiting game have just posted my heart goes out to all of us.
  9. garfield3

    garfield3 Registered User

    Jun 30, 2018

    So sorry to hear your news Brian. Difficult days ahead. Sending strength.
  10. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    There will come a point where your mother will refuse everything. My mother had her last mouthful on the Monday and she died Sunday. We did have her on IV hydration until the Wednesday. Things can vary so much, this is simply what happened to us.

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