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Thread: Douglas in hospice

  1. #11
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    So sorry to read about the problems you are having. I hope someone comes up with positive solutions for you.

  2. #12
    Thank you everyone. Ellie, the full face mask he has is slightly different to the one you have. I am going to ask our vent nurse if she thinks it is worth me buying one like yours. It sounds just what Doug needs.

    Dina, I think he would prefer to be in Wythenshawe, ironically. He certainly feels that the Hospice will not be able to succeed where the specialist unit failed. I really wish that he had not agreed to be admitted.

    I think it is a measure of Doug's personality that when we got his copy of the meeting report that went to his GP, the Hospice doctor wrote 'we suggested Mr Smith was admitted to St Ann's for assessment; somewhat to our surprise, he agreed'. For a man who can't speak, he is very good at making his feelings known😅

  3. #13
    Forum Member Ellie's Avatar
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    Christine, before you go spending money, this video might give you a better idea if the total face mask would work for Douglas (or not!)

    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
    Forum Member Gillette's Avatar
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    Quote Originally Posted by chrissie57 View Post
    I think it is a measure of Doug's personality that when we got his copy of the meeting report that went to his GP, the Hospice doctor wrote 'we suggested Mr Smith was admitted to St Ann's for assessment; somewhat to our surprise, he agreed'. For a man who can't speak, he is very good at making his feelings known😅
    Yes, I think he is, Chrissie! Itís good to know he still has his spirit.
    Dina

    Trying to keep positive, but not always managing.

  5. #15
    Well Douglas should be home on Wednesday 😊.
    Ubfortunately I seem to have picked up one of the stomach bugs floating around and haven't seen him since Tuesday - didn't want to risk the health of Doug or anyone else in the Hospice.

    The doctor rang yesterday to tell me how the assessment had gone. His coming home was the good news. But I was somewhat shattered to be told that the Hospice gave been unsuccessful in finding a way to make him comfortable in a mask, despite also saying he is now needing to wear his mask a lot more.

    I am not sure I really understood what I was being told because I feel really woozy - I really need to get better and speak to the doctor face to face to understand any implications to what he was telling me

    Apologies for rambling again - sometines I feel that every time I find a little bit of optimism, it gets snatched away. I feel now as if I am in a sort of limbo, wondering what is going to happen next

    Christine

  6. #16
    Forum Member Ellie's Avatar
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    Sorry you're poorly Christine (serendipity in the timing at least)

    I agree that it's best to chat face-to-face with Doug's doctor when you're well again and to ask the questions to which you want answers. In the meantime, fcus on getting yourself back to full health.

    Did you get a chance to watch the short video in my post above?

    Keeping you and Doug in my thoughts.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #17
    Forum Member Gillette's Avatar
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    Chrissie, Iím sorry you have fallen victim to one of the viruses thatís doing the rounds. I hope you soon recover.

    With regard to Douglas, I agree with Ellie but would also suggest talking to his vent nurse for further clarification. Perhaps mention the full face mask to her?
    Dina

    Trying to keep positive, but not always managing.

  8. #18
    Hello, Ellie & Dina

    Sorry, Ellie, I did have watched the video a couple of times. The mask is not unlike the full face mask he has been trying to use but the one in the video seems to have wider, better designed straps and it looks as if it would sit better on the face. I wanted to ask the vent nurse what she thought because I hoped she might be able to judge the likelihood of it being better than the ones he has tried.

    I don't really understand why they say they can't make him comfortable but he is going to have to wear a mask for most of the day now. Is he supposed to just tolerate being miserable?

  9. #19
    Forum Member Streetwise's Avatar
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    I had the same experience with hospices, they only help people who can talk with cancer ,we had best help at the MS respite centre at Leuchie (its not a servite convent now -its secular)near north berwick ,cancer hospices know nothing,get used to a lot of people knowing nothing and watch !them !they can be lazy ,they take advantage of health and safety to do the bare!!!!minimum .

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