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.

New Member and Struggling

Discussion in 'End of life care' started by GtoA, Mar 3, 2015.

  1. GtoA

    GtoA Registered User

    Mar 3, 2015
    2
    London
    Hello everybody,

    I've been reading through a lot of these posts and have been comforted greatly by the thought that other people are experiencing the same things.

    My Grandma is at the end stage of Alzheimer's and Vascular Dementia. She is in a nursing home and being cared for. We were told yesterday that she will be having MacMillan nurses coming now.

    For the past two months she has been in and out of hospital due to dehydration, she hasn't eaten or drunk for a while. When she tries to drink she looks petrified because she has lost the ability to swallow, a nurse basically massages anything she takes down her throat.

    We have been told that the next time she has an infection, as she's been developing lots of UTI's that she won't be transported to hospital and will be given morphine so at the moment we are just waiting for another infection. We had all decided that not treating was the best for her, until we were told by the Doctor's that this is what they'd be doing. This is when it became real.

    My Dad is not coping very well, and is basically living at her bedside. My Uncle who has POA has just been admitted to hospital himself due to the stress and the Grandchildren are picking up a lot of the strain. It's now got to the point that every phone call that comes through we expect to be 'the call'.

    Grandma is no longer able to talk, she just growls. Her body has seized up completely with just her eyes moving. This is the hardest thing I've ever gone through and had to watch. As cousins we are all rallying together for our parents but each of us have limited knowledge as to what is going on as our parents aren't taking everything in which is to be expected.

    My husband doesn't really know what to say so I don't have any output. I know Grandma is being looked after, but I don't know what to expect. No one knows how long Grandma has left, but we've been told to expect days or weeks. No longer. It's absolutely heartbreaking and I can't seem to make my peace with it yet.

    Suppose I just needed to say this in a place where other people understand what's happening.

    A
     
  2. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    130
    Hi

    My Grandma had dementia, and it was horrible to watch as a teenager. I loved her to bits as she was the only Grandma I had. Now my Dad has it, and it has been a horrible journey as you will know. He has little time left, and I dread the phone ringing.
    keep coming onto TP as its one of the best places to be in this situation.
    My hubby has been my rock.
    My thoughts and prayers are with you A.
     
  3. min88cat

    min88cat Registered User

    Apr 6, 2010
    581
    Hi there
    I had a conversation with the Dr who was visiting the nursing home that My MIL was in during the early part of September. She said that we were on borrowed time, but no one could give us any ideas as to how long (no one can) we asked that she be kept comfortable and pain free, she had pain patches and patches to dry up the fluid on her lungs. She survived somehow for another 7 weeks. There was a syringe driver available if it had been needed. MacMillan nurses are wonderful, experienced, understanding and a calming influence in a difficult situation. Your nan will be well looked after. It will be your Dad who will need taking care of during this time. Make sure that he takes regular breaks and eats properly. Just be there for him. That's all you can do.
     
  4. mumof2

    mumof2 Registered User

    Apr 22, 2013
    7
    Poor you and your family, a horrible time.
    Sounds like your doing your best, your caring and asking for advice.
    Like the previous comment said look after your dad, also the nurses in the home will know the family needs caring for as well as your Grandma and I am sure they will be happy to answer your questions.
    Do talk to your husband, I am sure it is hard for him to know what to say but him just taking the time to listen is important, you need to be able to talk or rant or moan!!
     
  5. GtoA

    GtoA Registered User

    Mar 3, 2015
    2
    London
    Didn't get a chance to come online yesterday, but wanted to say thank you for your words and advice.
    The MacMillan nurses have been brilliant in explaining what's going on to my Dad and I'm speaking to him 4 or 5 times a day to see how he's getting on. He works from home so is on his own most of the day until my Mum gets home of a night time.
    It's a real comfort to know that she is being kept as comfortable as possible. She does seem to have a pattern at the moment of refusing food/drink for four days, then getting a UTI every 2 or 3 weeks so that may be what the NH have based the idea of having a few weeks given that she will no longer be rehydrated.
    It feels awful putting times on things but I feel like it's helping us manage and appreciate every day that we have with her.
    For now, all we can do is sit with her, stroke her forehead which she loves and talk to her. Let her know that we are there. She has has Alzheimer's for 5 years now but it still doesn't feel like enough time to prepare.
    My husband isn't great with words, but he has been very comforting which is all I need at the moment. He's also great with my Dad and manages to cheer him up whenever he speaks to him.
    Thank you all, I've got a feeling I'll be spending a lot of time on the boards in the next few weeks.
    Alex
     

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