1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.


Discussion in 'End of life care' started by Waldo, Jan 10, 2015.

  1. Waldo

    Waldo Registered User

    Dec 28, 2012
    Hi all,
    I've not posted for quite some time as mum's condition has been fairly stable, however, this last week she has deteriorated. She had a bad seizure, caused probably by a UTI, and ended up in A&E, where they also discovered a partially collapsed lung. She was discharged the same day back to the NH with antibiotics.
    Now I feel we are facing crunch time and I just need some advice/support, which I know will be forthcoming here.
    I visited today, as I have done every day, and found mum to be really right... Her breathing seemed shallow and more rapid than usual and when she did wake up she just seemed more empty than ever. They say she's eating and drinking a little.
    Is it time for us to look at end of life care?? I want to arrange to be there when her GP next visits and want to have my questions sorted...
    She's given Pro-Cal supplements each day - can we request that these are stopped? They can't make her better...
    Can we request that any other medications are withdrawn? Antibiotics?
    I'm sorry if my post is a bit disjointed, but I'm really struggling with this. There are probably loads more questions, which I'll add when I think of them.
    I feel so angry at this cruel disease.
  2. janey106

    janey106 Registered User

    Dec 10, 2013
    Waldo,I'm sorry I have no answers for you as I haven't travelled this road this far yet with Mum but I wanted to acknowledge your post ..... You are absolutely right, it is so so cruel. What a heartbreaking position to be in. I'm sure others will be along with advice and support gained through bitter experience. In the end I think we can only do what we believe is right for our loved one in our own circumstances.
  3. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    Buffalo, NY, USA
    Ask for an assessment for Hospice/palliative care to see what they can offer.
  4. Laine5

    Laine5 Registered User

    Jun 15, 2013
    Our circumstances are a bit different but I can tell you our experience. Mum is at home, she had severe osteoarthritis in her hips and to cut a long story short, she ended up in bed and I couldn't move her for the pain, 111 Dr got her on to Oramorph then GP visit soon after declared 'end of life' care. Her appetite had decreased since September time and she was hardly eating and drinking anything. This happened at the beginning of December, it will be 6 weeks on Sunday and she is still here. She has not eaten anything to speak of in that time, nothing at all for at least 5 weeks, and only has sips of fluid. All medication was stopped and when we were struggling to get her to take the Oramorph the syringe driver was put in, (19th Dec)
    All are amazed that she has kept going so long. She has periods of wakefulness and periods of deep sleep. The roller coaster of emotions is unbelievable.
    I have accepted that this could go on for a time now and try to deal with the practicalities, put the emotions to one side. The support from Age UK team and DN has been fantastic, she has no pain that we can see, she still (at times) calls me by name, hard to hear what she is trying to say though.
    All I am trying to say is be prepared for the roller coaster. I can't advise on what to do, except to talk to the GP, get the facts/options. You know your Mum best.
    Thinking of you

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