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Douglas in hospice

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  • chrissie57
    Hello, Dina & Ellie
    Doug is taking a kinder view of Wythenshawe now. His vent nurse is Nicky, who is absolutely lovely and has done a lot to try and keep him steady. The problem isn't really the nippy per se, it is finding a mask which is comfortable for him and that just is not happening. This is even more of a concern now that he has been told he needs to wear it all the time.

    When the stay at the Hospice was proposed, neither of us realised that the staff (who are wonderful, incidentally) had no experience with the machines or the masks, although they can help with the skin problems that he suffers from. He said he would go in really to give me a break but before he was admitted last week I urged him to be sure of what he was doing, knowing how much he hates being anywhere like a hospital. As it turns out, I am even more stressed and really frightened.
    He does not have a feeding tube, they said he was too far advanced for either option and would be too dangerous.
    This stay isn't really a medical thing as such, it is all part of his end of life preparations and it is just making him miserable.

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  • Ellie
    Oh Christine, I am so sorry to hear of Doug's situation and how that all affects you.

    What was the issue with the Nippy that prompted the need for reassessing?

    If that hospice doesn't know enough about managing NIV, perhaps it is not the most appropriate place for Doug right now and he should be on a resp unit?

    The lack of calories won't help him overall - I can't remember if he has a feeding tube, sorry - and, coupled with non-optimal Nippy settings or ongoing breathing difficulties, could impact his deterioration.

    Is Doug in any form to make decisions about where he wants to be treated?

    You must be totally shattered. Big, big hug to you both.

    Love Ellie.

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  • Gillette
    Oh, Chrissie, I’m so sorry this is happening to you both. I’m not surprised you’re feeling as you do.

    It doesn’t sound as though the hospice is where he should be for assessment if they know so little about MND and ventilators. I would have thought he should be in the vent unit at Wythenshawe Hospital, even though I know he’s not keen on it.

    Have you spoken to either his vent nurse or Neuro nurse to find out exactly what’s happening and what plans they have? Has Douglas been able to tell you how he is feeling about things?

    Have the hospice offered either of you any counselling or emotional support because it sounds as if it could help you both.

    Please don’t feel useless, Chrissie. You’ve done an amazing job looking after Douglas. You are obviously devoted to each other. Sending each of you a huge hug.

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  • chrissie57
    started a topic Douglas in hospice

    Douglas in hospice

    Hello, everyone
    Looking for reassurance really. Doug was still having problems with his ventilation so there was a small meeting at our home consisting of the hospice doctor, his vent nurse and his neuro nurse. The upshot was Doug agreed to go into our local hospice for assessment, especially as the use of his Nippy is concerned, and to give me a break. They were also going to arrange to change his care team. He was admitted last Wednesday.
    It has been awful. Wonderful as hospices are this one seems to know little about MND and they seem to know less than nothing about Nippys. Worse, his admission seems to have triggered another downward step in his condition, he seems to be getting weaker in front of my eyes, they said this morning he is now at the stage of needing ventilation full time (which I imagined was still some way off) and, worst of all to me, he has started to refuse Fortisip because he hasn't got the energy to manage them.
    I HAVE insisted on having a couple of days to myself but to be honest I spent most of them catching up on things I have been able to do for him while he needed my attention and because when I see him the following dsy I feel as I had abandoned him.
    I have finally accepted that MND is going to take him from me but now I feel in a sort of limbo, as if it is going to be a lot sooner than I thought

    Sorry for rambling on, I just feel so helpless and useless