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The hardest question

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    The hardest question

    Mum was diagnosed in May which im still trying to absorb we have now been faced with the hardest question ive ever heard.

    The NG tube was fitted last week and came with a whole onset of complications so we have been pushing for the PEG to be fitted, mum is adamant the NG tube will be removed. The Neurologist had a video call with us yesterday and holds reservations over the PEG due to the frailty of mum. The speech therapist has advise she would like now be unable to swallow at all. So we have just been made to pose the question of whether she would like the tube removed and start with palliative care or take the risk of the PEG to extend life by what appears to be a relatively short time.

    I have asked mum if she has any fight left in her but she is unsure, how can anyone make this decision? Im finding it difficult in being strong, frequent trips to the bathroom and for cups of tea but how can she ever decide between these choices and how can I stay strong enough to help her decide?

    I can't help feeling guilty about this post, there are many on here going through much worse than me


      I’m sorry that I can’t help with your mum’s decision Kail. I don’t even know what an NG tube is. But I’ll share with you what my neurologist told me when I asked her about feeding tubes. She said that I’m not at that stage yet but assured me that these can be done even in my breathing was compromised. I guess the best source of help in making the decision might be speaking with the likely specialists that would be involved. The Anaesthetist seems to me to be the crucial one. I hope that this all works out well for your mum. 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.


        Originally posted by kailee33 View Post
        I can't help feeling guilty about this post, there are many on here going through much worse than me
        kailee33 Please don't think like that - it's not a competition, everyone here is going through hard times.

        I think you hit the nail on the head though in saying that your mum's opinion is important in making the decision re a feeding tube. Her neurologist obviously knows the bigger picture, so it'd be helpful if he/she gave more info on your mum's "fraility" and how a feeding tube procedure might affect her. It is important to have all the facts before making a nigh on impossible decision.

        Sending you a big hug.

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


          Please don't feel guilty about your post . You are a loving, caring daughter in an impossible position.

          Like Lynne I haven't a feeding tube and I was told I wasn't at that stage yet. I was asked to consider if I wanted one in the future and was assured it could be done if my breathing had been affected.

          My mum had a NG tube after a major operation. ( not MND ) and she said it was worse than the operation ! I think they are really uncomfortable and she couldn't wait for it to be removed.

          Take Care of yourself and I hope you get some answers soon.
          Love Debbie x


          • It is important that your mum makes the decision if she is able to process the risk. It is better for mum to try if that is what she wants.