Mum now and me one day soon.

Discussion in 'I care for a person with dementia' started by shelagh, Mar 10, 2015.

  1. shelagh

    shelagh Registered User

    Sep 28, 2009
    I was diagnosed with AD four years ago, my mum has had vascular dementia for 18 years and was taken into hospital from her care home two weeks ago when she was not expected to last the weekend. After 10 days in a frail elderly care ward on a drip for dehydration we were lucky enough to be found a palliative care bed in a small local hospital. Mum weighs less than 5 stones her swallowing mechanism has stopped and her agitation is heart breaking. She flings herself around the bed all the time. And her bed is now surrounded with high bumpers to stop her harming herself she lies in the centre of the nest of cushions yesterday she was at the bottom of the bed so often the wonderful nurses eventually re made the bed so she could stay at that end. She doesn't speak except to scream' No' when anyone touches her for any kind of personal care. Because her liver is failing she tears at her skin because of her itchiness and she has torn lumps out of herself, the doctors have tried so many things to relieve her but nothing has worked
    There is the odd moment of relief when we can stroke her face or when she clearly responds to us singing to her- something she has always loved but mostly it is hell watching her and feeling so helpless. When I am with her I can concentrate on mum and loving her but when I leave the ward the thought ' your turn next' goes round and round in my head. I have never ever thought it before but yesterday I asked a dear friend if she would take me to Switzerland while I still have capacity. Sorry for this scream of anguish but this is the only place where people can understand.
  2. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I am so very sorry. It must be heartbreaking to see your poor mother suffering so. Extra hard for you when looking into the future.

    I hesitated to post as I realise that I can only imagine your feelings but that doesn't mean that I can't sympathise and understand the pain you are going through.
    However, please don't think that what you mother is going through will necessarily be the same for you. My mother, who had Alzheimer's, was very different from my husband with Vascular dementia and everyone is different.

    I know it is easy for me to say and so much more difficult for you.
    I do hope you can find plenty of support in your to help you face the future if not with optimism, then with a degree of resolution.

    My very best wishes to you. x
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Hi Shelagh :)

    I have not gone through your experiences, so can only imagine how you feel. It must be so awful to see your poor mum suffer so much.

    As Saffie says, though, things may (and probably will) be very different for you. I don't know what else to say, but I couldn't read your post without replying. I just want to send you love and hugs. Saffie has put it much better than I can.

    Take care of yourself.

    Lindy xx
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I don't want to disagree with Saffie but it's not necessarily "looking into the future".
    My late Mother and now my wife too both has AZ and neither did/are the way described.
    My Mum just went doolally, thought I was a member of the staff, asked me if I had children, totally lost the plot but was happy as long as she was warm, well fed and the telly was on really loud. Died from a heart condition in the end.
    We're sat here now (my wife was diagnosed 4 years ago) watching "greatest comedy things ever" or something like that, she's wetting herself (not literally thank gawd) laughing at it.
    It can be bad, it can be really bad, you only have to read some of the threads on here to see how desperate it can get, but it doesn't have to be like that, OK it's not a bed of roses. It often seems like people only post on here when they're at they're struggling and that's fine but whilst it's not perfect you can actually have AZ and be happy.
  5. RedLou

    RedLou Registered User

    Jul 30, 2014
    Shelagh - just to say my heart goes out to you. And there is such dignity and eloquence in your 'scream for anguish' so please don't feel you need to apologise for it. *virtual hug*
  6. Owly

    Owly Registered User

    Jun 6, 2011
    This is a delicate subject, but are they trying morphine to calm her distress and any pain she may be feeling?

    My mum was in this kind of state in her last week, though not tearing at her skin. But the extreme agitation and lack of responsiveness and inability to swallow were as you described.

    The doctors said she was dying and they would just try to keep her comfortable.

    After the morphine started, it was about 3 days until the end. She slept the whole of the day before with my sister sitting with her, then she passed over in the night.

    It was agonising seeing her like this and I felt that the greater part of her had already transferred to the next world. It was such a relief to us all - and her too, I feel - when her body finally gave up.

    (((((hugs))))) from Owly
  7. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    Dear Shelagh, what a truly terrible time you are having. Your mother's suffering is heartrending and I do hope the doctors find some way to give her relief soon. It seems crazy that there is nothing they can do, I hope they have found a way to make her comfortable by the time of your next visit.

    The eloquence of your post shows that you are a very, very long way from the need for a trip to Switzerland but I understand your need to feel that you would not be allowed to suffer the torment your poor mother is in.

    Take care, I am desperately hoping that your mother gets some relief soon.
  8. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    You misread my post Kevin.
    I wasn't the one looking into the future but it was clear from Shelagh's post that she was doing so by her final comment.
    In the contrary, I was reassuring Shelagh by saying that her future could be, and probably would be, very different.
    Shelagh, there are others here who have a similar diagnosis so do keep posting as I'm sure you will find comfort and support. x
  9. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    I have decided myself if I ever have AD, I'm going to Switzerland, there's probably quite a few with experience of AD that would do the same.
  10. Ash148

    Ash148 Registered User

    Jan 1, 2014
    Dublin, Ireland
    Dear Shelagh, I am so sorry that you are feeling so anguished and hope we can support you here. As has been said here so many times, each person's journey with dementia is unique. Dementia will never be an easy burden to bear, but yours may not be as hard as your mothers. As the daughter of two parents with dementia, I know that my chances of developing it are very high. There is a huge amount of research underway, however, so I hope that the treatments and options will get better. I try to follow the "one day at a time" philosophy, not always successfully, as still following mum on her difficult journey, and know that dad's has a lot longer to go.

    Please do take care of and be gentle with yourself, and make sure that we help you as much as we can.
  11. shelagh

    shelagh Registered User

    Sep 28, 2009
    All change

    Mum still struggling but a little calmer. However although we understood when she was moved to a small local community hospital that her 'palliative care', bed was there for her as long as she needed it, it now seems that there was an unspoken condition 'provided she dies in the next few days.' So now we are faced with finding somewhere that can offer her the degree of care she needs, unable to sit up unaided, dehydrated unable to feed or care for herself in any way and weighing less than 5 stones She had been in a carefully researched care home for two years during which time, she fell and broke her arm, fell innumerable times and cut her head open and even developed hypothermia. Before that she had lived in her home with no outside help except the care of her large family and was fine. After a bad chest infection she had to go to hospital where she was assessed as needing residential care. How how how can we be sure we find the right place? There are wonderful hospices for cancer patients why are there none for dementia patients at the end of their lives?

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