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Thread: Hospice care

  1. #1
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    Hospice care

    My husband Bill was admitted yesterday as he is having such a rough time now. Not slept properly for 5 weeks due to the mucus choking and loss of breath. The kind faces have been a godsend for me and some one to understand my pain as I watch him struggle. We have our ups and downs, yesterday I was so happy as Bill fell asleep for 6 hours with his bipap on. How good I thought, he has always fought it, he woke up breathing a lot better. I had thought it was a breakthrough, when we tried to it again in the evening we couldn't get the bipap working. A few text to the respiratory nurse and she got dressed and came out to him ( what a fantastic nurse so dedicated) then the bubble popped, Bill's breathing is too shallow to initiate the bipap. So how much use did he get in those 6 hours? So it's back today to seeing what the drs can prescribe to ease his suffering. I'm just hopeful now that they can relax him enough now to enjoy some more sleep. The nights are so long for him. He didn't want me to leave last night so I stayed. Oh Bill if only I could see you rested again. Yesterday I spent a lot of my time in tears, evoked either by a dr a nurse or a friendly MND connect Ruth who has phoned and checked on me. Well back to Bill today, we need to get you comfortable.

  2. #2
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    I'm so glad the hospice are a good support. My dad's community team are great too, and he will be meeting the hospice team soon. Sending you both hugs
    M

  3. #3
    Forum Member Katrina36's Avatar
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    Hi Reta, not heard from you in a while, sorry to hear what a tough time your husband has been having, and yourself also, it's nice to hear that you've had some dedicated people around your husband and yourself helping where they can, hopefully they can give him something to relax him more... katrina x

  4. #4
    Forum Member Terry's Avatar
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    Sorry to hear your pain Reta;

    There's no doubt that his in the right place for treatment, I just hope that they can make him at ease and he gets some much needed rest.

    Try to get some rest yourself, hugs, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
    Forum Member Ellie's Avatar
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    Hi Peta,

    So sorry to hear that you're both having a tough time. The hospice staff will definitely be able to make Bill comfortable and support you.

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

  6. #6
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    Thank you all, they have started him on a syringe driver for medication to help relax him. Only low doses but I hope it works.

  7. #7
    Forum Member Terry's Avatar
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    Fingers crossed Reta;

    It should make the difference and give him some needed rest.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #8
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    A week later, I have today gone home to collect items, leaving all 3 children with Bill. I have to say it shook me up, the empty house was horrible. I drove back to the hospice devastated and in floods of tears. Sitting here just watching his shallow breathing, too scared to sleep myself. Oh I love this man, I don't want him to suffer, but the selfish side doesn't want to lose him. As he gets weaker I can't understand what he ask me for . I hate not being able to fix this.

  9. #9
    Forum Member WendyWooG's Avatar
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    Oh Reta, sending you big hugs.
    Wendy xx

  10. #10
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    Thank you Wendy, well another night passed. Bill is a sleep now on his bipap, some comfort, although we know his breathing is to shallow to actually engage the bipap. ��

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