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  1. #16
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    My dad was put on end of life care and my Mum was adamant she wanted him at home. His own reaction to going home from hospital was one of delight, though he was incapable of showing much emotion by this time. I am so grateful that Dad had excellent palliative care - NHs carers twice a day, district nurses daily and always on the end of the phone. I cannot fault the care he received, though I would say another family member needs to be there besides your Mum unless you can get extra support eg Macmillan or Marie Curie nurses. I stayed for the last week of my dad's life and only had to call the district nurses once. They were brilliant and came within the hour to make Dad comfortable without Mum even realising anything was happening. His passing was painless and everything I could have hoped for.

  2. #17
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    Quote Originally Posted by SouWester View Post
    My Mother's situation was similar and just for once against all my better judgement I kept my mouth shut. Just for once I was right.

    End of life came in a hospice. As the final moment approached my father was told to go home 'There is no point in you being in on her death'.

    I nearly accused him of cowardice but on reflection wondered if maybe they were able to 'speed up' the inevitable process. I hope they did.

    Either way I now realise it was the right decision and he suffered far less anguish.

    My wife and I were with her mother until the final moments (Alzheimer's) in a care home and maybe that was right.

    I now have to face her death as she has early onset which has speeded up recently.
    Oh, Souwester,

    How awful for you. You will find a lot of support on this forum.

    Sending you hugs xxx
    Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.

  3. #18
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    Home or Care/Nursing Home in general

    My wife has been in a Care Home for 14 minutes months and hasn't really settled just seems resigned to being their I see two or three times a week.
    Her general demeanour is calm and due to the CPN putting her on resperidone doesn't
    seem to be declining. I would like to know if she can have a assessment as to where she is in her decline because it seems strange to me that the care home doesn't give a monthly review am I asking too much?

  4. #19
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    Thank you everyone for sharing, I'm very moved by your personal stories and grateful for your support.

    Things have not progressed much for us and we continue in limbo. Dad is still in hospital, now 5 weeks without food and becoming skeletal. The hospital has been keeping him going on IV fluids whilst he was passed around continual referrals - dietitian, nutritionist, SALT, care of the elderly team, psychologist and neurologist, several times each! I think the main issue was that he is on a surgical ward and they just don't know how to deal with this situation.

    They have finally admitted defeat and accept nothing can be done. Fluids were finally withdrawn on Thursday and he just seems to sleep all the time. The discharge nurse passed us on to the Continuing Healthcare team, who apparently arrange end of life placement and funding, although we haven't heard anything from them yet despite being referred on Wednesday and being classed as fast-tracked. And unfortunately our 2 preferred options - local cottage hospital and nursing EMI home where dad had daycare - have no capacity.

    So mum is back to saying that she'll have him home for the end, although I wonder whether he'll last long enough to arrange it. She's cleaned the dining room and been looking at private companies who will provide carers for night-time. I guess we'll just have to wait to see what the team offer us and make the best decision we can at the time.

    Thanks all.

  5. #20
    Volunteer Host Shedrech's Avatar
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    hello rubytubes
    my gosh, what a sad situation for you all
    you and your mum must be beside yourselves, just wanting your dad settled
    if he comes back home, do consider contacting his GP for a referral to Marie Curie nurses; they support at end of life for everyone (not just those with cancer as some believe)
    much sympathy and best wishes to you all
    And all shall be well and
    All manner of thing shall be well
    Julian of Norwich & T S Eliot

  6. #21
    Volunteer Host Shedrech's Avatar
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    hi carer13
    Quote Originally Posted by carer13 View Post
    My wife has been in a Care Home for 14 minutes months and hasn't really settled just seems resigned to being their I see two or three times a week.
    Her general demeanour is calm and due to the CPN putting her on resperidone doesn't
    seem to be declining. I would like to know if she can have a assessment as to where she is in her decline because it seems strange to me that the care home doesn't give a monthly review am I asking too much?
    my dad's been living in his care home for just over 2 years and he has a review of some kind maybe each 6 months but not monthly - although I do chat with his carers every time I visit to find out how he is, and if anything is bothering me or them, they will call in the GP
    it's really hard for anyone to give an answer to where a person with dementia is along the 'road' and your wife may stay settled for quite a while with no major changes - hopefully no infection of fall will cause any problems
    some folk do settle, though from what I see of the other residents in dad's home, each one has their moments of agitation; some walk the corridors looking for a way out (but oddly never actually bundle their way through the door to dad's floor when someone arrives or leaves - though most visitors try to only open the door when no resident is close by)
    so it's good that your wife is calm
    do have a chat with the care home manager as the daily records will give an overview of how your wife is - and ask if there is a review due
    best wishes
    And all shall be well and
    All manner of thing shall be well
    Julian of Norwich & T S Eliot

  7. #22
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    Jul 2015
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    Cheshire
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    The end

    Hi all

    For closure, I thought I would let you know what happened in the end.

    Dad eventually passed a week ago last Friday in the same hospital bed, after 7 weeks of no food and 14 days of no fluids, following his failure/refusal to swallow. He was fairly peaceful up until the end, and we know it was what he wanted, even with his limited capacity. However that didn't make it any easier for us, especially mum, to watch him become slowly emaciated and die of starvation and dehydration. It just feels wrong that that is the only medical option available to us, other than prolonging his life artificially, which he would not have wanted and would have just meant that he potentially spent years in a bed in a nursing home with tube feed and IV fluids. Sometimes I think we are kinder to animals.

    He stayed in hospital to the end and as a family we are all happy with that decision. They finally found a bed in a nursing home, but mum wasn't happy with it when she visited, especially as he would have already been 10 days without fluid when moved. So at least he had full end of life medical care and mum was supported by staff that she had got to know over the last 7 weeks.

    Thanks all for your advice and support. Just got to get through the funeral on Friday, then help mum re-adjust to life without dad and without being a full-time carer! x

  8. #23
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    Thank you for letting us know what happened, rubytubes and I am sorry for your loss.

    My mum died a few weeks ago and went 17 days without food or fluid, it is so hard to watch. If it is any comfort to you, they do not die of starvation and dehydration - they stop eating and drinking because they are already dying and the body is shutting down and can no longer process the food. I read an artical (Im sorry, I cant remember where now) that said that giving people with dementia at this stage feeding tubes can cause pain and does not prolong life by very much. And even if it did, would you be prolonging life or just prolonging death? Im sorry if this sounds harsh, it is not meant to be, I wanted to say this so that you did not feel guilty about making the decisions that you did. Be gentle with yourself and know that you did the best for him

    ((((((hugs)))))
    Learning to sing in a cage

  9. #24
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    Sorry for your loss, but glad that your dad was peaceful, and that the family had support. I would echo what Canary has said. Everything that could have been done, you did. You have nothing to feel guilty about.

  10. #25
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    Dec 2012
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    Care at home or stay in care home?

    My wife is only 69 and has been in one care home for 15 months the issues that I had with the care home are being resolved and the extra attention my wife now get seems to be helping her she seems quite settled.

    The problem is not her now but me for the last 14 months I have been complaining looking to move her out due to issues that have hopefully been resolved.

    So I can breathe again and nothing is happening for me to deal with I almost hope there was? Because after 5 years of getting my wife diagnosed and into the care home as advised for her own good and supposedly mine! I find that I am bereft of interest in anything I have support from my adult children and care services etc.

    But I have no motivation my appetite is less I don't want to do anything or look forward to
    anything I also have an elderly mother who lives 75 miles away and is 85years old now.
    My father has been dead for 10 years so all I seem to think about is my wife in care and my aged mother I have been referred to my local Mental Health service by the GP but was told at least 6 weeks before I get any appointment.
    So as I took early retirement 4 years ago to look after my wife at home I now feel that having done all the work I am the one at a total loss.
    Do I have my wife back with me and arrange care to come in to the both of us or do I just
    grieve, and lump it or what?
    Also I was very social I use to enjoy fishing walking and socialising it seems like I have walked into open prison of my own making.

    Any suggestions!

  11. #26
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    May 2017
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    Northamptonshire
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    Hi Carer13 do you think you would be up to doing a little voluntary work? You can choose your hours around your caring/visiting commitments. It might help bring a little interest back into your life & give you a feeling of self worth, something I'm sure you well deserve.

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