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Life as a Carer

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    Life as a Carer

    Hi all

    I have been a carer for my father who was diagnosed in February 2019. He has ALS.

    It took 6 months to get a diagnosis but this was only after he had a serious fall in January 2019 and was admitted to A & E and after our insistence that he leave hospital with a diagnosis. He had the EMG a few days later and within a 10 days his diagnosis came through. He was relieved to hear it when he was told, because he could finally give a name to his condition, but oblivious to the devastation it would cause and the rapidness of it.

    I have not been exposed to many diseases in my life, but I can’t think of a disease more cruel than MND. He is basically a witness to his own physical deterioration and powerless to do anything.

    It’s wrecked a devastation on my father in the first 12 months to the point where he lost capability to do everything, walk, talk, eat; toilet independently. He wears a catheter which brings its own issues.

    Things like being able to hug his grandchildren or saying he loves his grandchildren he can’t do. He can still smile though we seldom see that now. He has the ability to breathe independently;make facial expressions, he can cry, he can smile, he can still think intelligently, he still has that very methodical thinking.

    His head has dropped to the left, these last few weeks so he’s looking more like the Stephen Hawking version of MND.

    Thankfully we have had a good care package, through CHC, so I don’t have to do as much physical caring.

    I felt like writing this, as he burst out crying this evening, and I can no longer find words of comfort. He lost his wife, (my mum 20 years) ago and she would have been his comfort blanket and thats something I can never be. It just feels like he has nothing to look forward to.

    Does anybody else have feel this disease brings nothing but hopelessness?


    This is so hard to answer, as we all know where it ends. You can only love and support your Father and be thankful you have had him for the time you have. Let him know you still think he is the same man inside, that this hideous disease hasn't taken him from you.
    Can you see his MD about his depression, maybe some medication will help?
    When I feel low, I think about the young people who get it, ones who have young children; I don't know how they cope. It makes me grateful I didn't get it until in my older years.
    It must be so difficult for the carers, I can't imagine. Good luck.


      Hi Victor, about your fathers head drop. Has he got a neck support? If not then please speak with his OT who can get him assessed for the correct support. There’s lot’s available out there but as he might need to try a few for the most comfortable one then it’s best if you let the OT sort this out. If your fathers head is in a good position he could read, watch films and/or control a device with eye gaze. Does he have that?

      I’m glad that there’s a good care package for him so that you don’t become too frazzled. Take care, Lynne
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.


        Hi. I'm a carer too, for my stepfather. He is progressing towards having the symptoms you describe in your father. I've just arrived at his home in Buckinghamshire (I live in Yorkshire) and my intention is to stay with him for the foreseeable 'future'. He has carers coming in twice a day to attend to his feeding tube and pander to him (!) But it is heartbreaking to see someone who has been a true father to me for nearly 50 years in this horrible state, and knowing it is only going to get worse. It would help me to have other carers to talk to here. Much love to you.


          hi everyone
          yes this is a very cruel disease. i thought there was something wrong with my husband. his voice had changed. he was having problems which i took to be dementia. he had a nasty fall and has had 2 more since. he was having problems with his arms shaking. and now finds it very difficult to use his hands. its very depressing and worrying. i don't know how to make his life easier as he gets so tired. i find it hard to be positive all the time. to be honest how can i be positive at all? sometimes i think i am being selfish and worrying about me but it does drain my energy away. i feel for you all. lots of hugs to everyone. i wish they would hurry up and find a cure for this dreadful disease.
          when i can think of something profound i will update this.