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    Palliative Care

    Hi,

    6 months from first symptoms and 3 months from diagnosis my wife is already completely paralysed from the neck down, it is already too late for the PEG and doctors are now talking about palliative care which is extremely distressing. Local hospice does not take patients in for more than a week and it looks like she will come home with a "palliative care pack". Has anyone had this experience and how have they coped ? any advice ? Is it manageable at home ? Many thanks .

    #2
    Hi Philippe,

    I am sorry you've had to join the Forum to ask such a question, but a warm welcome to you.

    Your wife's progression is dramatic - I cannot imagine how difficult it is for both of you to get your heads around what is happening...

    Palliative Care provision can vary depending on where you live but, in general, it should provide the same treatments (medication-wise) as if she were in the hospice.

    Care- and nursing-wise is equally important so it'll be interesting to see what the "package" entails - ideally, she would get CHC (funded care) - you won't really know whether it's manageable or not until you know what's involved versus what support is in place.

    Where is your wife at the moment?

    And it is very common for hospices not to take patients on an open-ended admission, so to speak, but that's not to say she won't be admitted in the future.

    Let us know what her package entails when you can and people with experience can chip in.

    Take care.

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

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      #3
      Good evening Philippe,

      Warm welcome from me to in this very difficult time for you.

      I'm not sure where you are in the world but sometimes hospices offer care for those who may eventually become their inmates – I guess you could call this an outreach program.

      Also, do you have any choice of hospices?
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

      "Things turn out the best for people who make the best of the way things turn out"

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