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Thread: Meltdown

  1. #41
    Forum Member Gillette's Avatar
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    Hi Terry, Deb, Sheila and Shrew,

    Thank you all. It really is a special sort of support on here, isn't it? Thanks, everyone.
    Dina


    Trying to keep positive, but not always managing.

  2. #42
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    I went into the hospice again to give my wife a break. On the first night the active mattress was set too hard, and the alternating cycle was not working. The care assistants refused to change the setting because they didnít seem to know how active mattresses work. By 3 am I was weeping with pain, and had the beginnings of a pressure sore on my ankle. From thence onwards I was treated as though I had dementia, all my complaints were treated slowly and begrudgingly. After 4 days and only one hoist to the toilet my wife discharged me - the stress was too much for both of us. In two yesr I have not had a meltdown, bbut often feel on the edge.

  3. #43
    Forum Member Barry52's Avatar
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    I’m sorry that the hospice has let you down and this is not what we expect from an establishment meant to help. I hope your wife will register a complaint with the management as the care staff are clearly failing in their duty.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  4. #44
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    No point now, very few are interested in what happens to us. I will be dead at Xmas

  5. #45
    Forum Member nunhead_man's Avatar
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    Hi Jonboy

    Quote Originally Posted by jonboy53 View Post
    No point now, very few are interested in what happens to us. I will be dead at Xmas
    I'm sorry to hear that.

    However your treatment as you describe falls far below what I have seen in our local hospices with elders of mine and a friend. And far below what I would want for me when my time comes.

    If you do not want to say anything yourself perhaps saying it to an MNDA person (visitor, nurse, etc) might get the message over?

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  6. #46
    Forum Member Kayleigh's Avatar
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    Hi Jonboy,

    Sorry to hear that you were treated in such an appalling way at the hospice.

    Now you are back home with your lovely wife, I hope you can relax as much as possible and enjoy your home comforts. Home is where the heart is and there's no place like home (and your home has a far superior MND facility than can be found at any hospice!!).

    Love and best wishes to you and your wife,

    Kayleigh x
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  7. #47
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    thanks K

  8. #48
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    Sorry Jonboy for your experience at the hospice,

    It's so worrying that we can be treated like this and your wife is unable to have a break or relax. I am sure she is happier with you being home because she must have been very worried.

    I hope you are comfortable at home now. As Kayleigh said there is no place like it.

    Love Debbie x

  9. #49
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    Sorry to hear you had such bad time at the hospice. Never been in one myself yet.
    Hope you are comfortable at home now.
    Best wishes
    Sheila x

  10. #50
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    My wife and I are going to get a carer in maybe two days a week to give her a break. She is very small and I still weigh 80kg. I havve spent £20,000 on a proper MND facility at home. I can go to the loo and wash my hair have a a]shave and strip wash in 55 minutes. Getting harder because my arms are failing.

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