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Nursing Home Care Nightmare

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    Nursing Home Care Nightmare

    My wife is diagnosed with FTD with MND since March 22 and been in hospital since mid Sept 22. A section 3 has been issued. Her behaviours are challenging and therefore needs EMI specialise care for severe dementia. My wife is peg fed, still physically very able but dementia is the biggest challenge for now. I am visiting between 4 and 6 hours a day to feed her soup etc that she can still eat.

    The authorities have come up with only one possible home so far that would accept her which having visited I rejected as it was run down , old and very tired. The thought of being forced into what I feel is an unacceptable option and my wife spending what remains of a very curtailed life span sickens me.

    What can I do as dealing with my wife’s illness and all it’s implication is simply enough on its own and the thought of putting her into a nursing home I don’t feel is up to scratch is destroying me. We are in South Wales.

    David1963 MND Connect won’t answer you until after the weekend David, but I want to sympathise with the desperate situation in which you find yourself.

    It is notoriously difficult to find a nursing home to cater for people with FTD-MND with the added ‘complication’ of having a feeding tube. In many cases it’s down to ignorance of exactly how to actually use and take care of a feeding tube, staffing, and plain reluctance of management to accept such residents. Most providers of tube feeds are only too willing to go into a nursing home and train staff on how to use the tube.

    I’ll just add that whilst décor and aesthetics are indeed a factor, it’s the staff who make or break a nursing home: their kindness, their competency, how they engage with residents and how happy and settled the residents are is more important (not that I'm advocating taking the home offered) xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Dear David,

      I am really sorry to hear that you are having such a stressful time finding an appropriate care home for your wife. Please could you call the helpline on 0808 802 6262 between 9am and 5pm, Monday to Friday. It is really important for us to fully understand your circumstances in order that we give you the best advice.

      Kind regards,

      MND Connect Advisor
      MND Connect
      Contact us on 0808 802 6262 or at [email protected]