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Living at home with care

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    Living at home with care

    Hi all

    Wondering if any of you have lost use of both arms and legs but still manage to live at home with carers regularly coming?

    I’ve just been told my fathers care company can’t manage his care anymore as he needs four people to move him etc and doing all I can to avoid him needing to go into a home as this isn’t what he wants


    Hi Vicky,

    I've no use of my arms or legs, have no speech and am totally dependent on others for practically everything - I cannot wash & dress myself, feed nor take my own meds, get to the loo etc. etc. Oh, I use my eyes to control my PC, eye gaze.

    My family are working or in education, so I am alone from about 7am to 7pm, Monday to Friday. Carers come in and out during the day to get me up & showered, feed me, give me meds through my feeding tube, bring me to the loo, do my pump feed (feeding tube) and any help I may need for daily living. Two carers come at a time. I don't have them full-time during the day - I don't need them nor do I want them every minute of the day!!

    My husband and kids are home at 7pm-ish and are on duty then

    So, it is possible, if there's the will from the carer agency etc...

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