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Douglas in hospice

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  • Streetwise
    replied
    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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  • chrissie57
    replied
    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?

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  • Gillette
    replied
    Chrissie, I’m sorry you have fallen victim to one of the viruses that’s 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?

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  • Ellie
    replied
    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.

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  • chrissie57
    replied
    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

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  • Gillette
    replied
    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! It’s good to know he still has his spirit.

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  • Ellie
    replied
    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!)

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  • chrissie57
    replied
    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😅

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  • miranda
    replied
    So sorry to read about the problems you are having. I hope someone comes up with positive solutions for you.

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  • Ellie
    replied
    Chrissie,

    This is the mask I wear in bed - Total Face Mask by Respironics - no contact with the nose and supremely comfortable. Maybe it'd suit Doug? (not great if he had to wear it during the day though)


    Total Face Mask.jpg


    Love Ellie.

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  • chrissie57
    replied
    Good morning everyone, sorry I went quiet but I fell asleep in my chair.

    Ellie, I feel it may be Douglas' face which is the problem, if that makes sense. He has tried every single mask going, I think, and none have been truly effective. One of the issues is that he seems to have very sensitive skin. Even a small amount of escaping air (not enough to set the alarm off) which the vent nurse is not too important seems to cause him very great discomfort. The best mask so far has been the full face one but even that seems to cause the same issues.

    The naso-gastric tube has been mentioned. In Douglas' inimitable fashion, he indicated he would not consider it because it was barbaric😕. I hope he might change his mind as he finds it harder to eat but he is a bit stubborn😒.

    Mandymc thank you so much for the link but I was wondering where your husband was treated? We have been provided, free of charge, with ALL the masks Doug has used - we have a couple of those pictured, which were not effective but of course cannot be used by anyone else; I have thought the supply is a bit wasteful. So I just wondered where you were that would not supply them - the authority may not fund them but our experience is that the NHS will

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  • Gillette
    replied
    Hi Chrissie,

    I agree with Ellie about considering an NG tube for Douglas. Have you thought about trying to get him admitted to the vent unit?

    The two of you are so obviously devoted to each other. It is so sad that you are both having to go through this. I really wish I, could do something constructive to help.

    Sending you both much love and enormous hugs.

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  • Mandymc
    replied
    Hi Chrissie I hope the link is some help to you I'm not to good with tech but hopefully it works. My husband found his nippy mask really uncomfortable to and found this on line the nhs will not supply
    it so we bought it and he gets on really well with it and it's more comfortable for him, it might be worth looking into for Douglas, I
    hope you get a litle rest, xx
    http://mysleep.resmed.com/GB/en/CPAP...shion/p/640003

    Leave a comment:


  • Deb
    replied
    Thinking of you tonight Chrissie and Doug,

    I am so sorry for the situation you are both in and I do hope you get some rest tonight Chrissie. You are doing a brilliant job caring for Doug.

    Hugs to you both,
    Love Debbie x

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  • Ellie
    replied
    Oh I understand, Christine.

    I am still amazed, well appalled really, that nobody can find a comfortable mask for Douglas

    He may be able to get a naso-gastric (NG) tube if he wants to feed, but he might have to go to a hospital for one if the hospice don't place them (a quick procedure)

    Can you talk to a counsellor in the hospice and share your fears?

    Love Ellie.

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