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Supporting my stepfather

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    Supporting my stepfather

    Hello everyone. I've joined this forum as I know it will help to talk to people going through similar situations and to help me to understand how to cope. My stepfather, who has been a father to me for nearly 50 years, was diagnosed with mnd about a year ago following symptoms which he had been experiencing for a while. He is 75 and over the last few months has deteriorated rapidly. He was the last 'day' patient at a hospital in March when he had a PEG feeding tube fitted and the ward then locked down for COVID-19 treatment only. He has carers visiting him twice a day who clean his tube and help him with medication etc.
    I live up in Yorkshire and he is in Buckinghamshire so I have started driving down once a fortnight and staying for a few days but I feel so helpless as he can't communicate (his speech has just about gone now) and it is heartbreaking to see him get weaker and weaker. I am now planning to move down there and live with him for the forseeable future, although I have no idea how long that will be - possibly only a couple of months.
    I would just appreciate being able to share my thoughts here and to read other people's stories and learn how they are dealing with difficulties etc.

    #2
    I think you moving down will bring him some comfort. Good for you.

    I took that decision when my father was diagnosed and moved my family to take care of him. 18 months later he still battles on. It’s been the toughest time of of life. But I can’t imagine how hard it would be to live with this condition without loved ones beside you.

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      #3
      Welcome to the Forum, Kate, sorry to hear of your stepfather's diagnosis.

      Admirable of you to move in with him - I'm not a carer but I doubt my husband, or any other carer, would say that helping a loved one with an MND is easy. You'll find good help, advice and support on this Forum and an understanding place in which to moan, rant or sob!

      Do you know if his speech & language therapist (SLT) is organising any communication aids for him?

      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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        #4
        Welcome to the Forum, Victor - sorry to read of your father's diagnosis.

        Your compassion and love for him comes through clearly, he's fortunate to have you.

        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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          #5
          Welcome Kate and Victor. I’m sure you will find the forum supportive as you both as carers need to think of yourselves as well as your loved ones. Do,please ask questions, someone will probably know the answer, usually from their own experience.

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            #6
            Thank you for your comments. It's wonderful to know there is support out there.

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