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Carers or Nursing Home

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    Carers or Nursing Home

    It seems likely that my wife will be granted funding for Continuing Healthcare (CHC) by the NHS.
    it provides for 24hr care in a nursing home or 4 X 1 hour daily visits by 2 carers in the home.

    I'm naturally relieved to have this level of support but unsure as to the best way forward. We are early 70's with a caring family but they don't live anywhere near us. It will be me and my lovely, long-suffering wife.

    I'd be interested to hear of peoples' experience and choices when faced with this decision.

    This seems an odd thing to post on Christmas Day but that's MND for you! It disrupts and replaces all the usual routines and landmarks of daily life!

    Merry Christmas to everybody on here!

    Merry Christmas to you, Ken, and to your lovely lady also.

    Originally posted by Ken View Post
    it provides for 24hr care in a nursing home or 4 X 1 hour daily visits by 2 carers in the home.
    That’s quite some difference, isnt it. On one hand it’s implied that your wife needs/is entitled to 24hr care and on the other hand, she has been granted 4hrs homecare per day.

    I don’t know how much assistance your wife needs but, if that were me, 1hr shifts are not long enough to get me out of bed, showered, dried, dressed, get meds and coffee, nor would 1hr be enough to cook a lunch, feed me and toilet me - I use a hoist and have 2 carers.

    So, some thoughts to discuss with the CHC people:
    Can the 4hrs per day be increased?

    It may not suit your home situation but if it does, what about a live-in carer, with an additional carer throughout the day, if necessary.

    What are the chances of getting a bed in a decent nursing home within easy reach for visiting. I know that your wife won’t have the added complication of having a feeding tube or NIV, but not every nursing home readily takes people with an MND.

    You can also directly employ carers within the CHC funding, although this option may not appeal to everyone.

    As for the decision of care in one’s own home v in a nursing home, your wife’s wishes are important.

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


      Ken Merry Christmas to you and you wife. Good advice from Ellie as usual. Hope you both get the right care what ever your decision. It can’t be easy for you. Best of luck xx