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No to peg and Weight

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    No to peg and Weight

    Hi all,

    Hope you are all well.
    I have attended hospital with my dad today. His weight has dropped so low now and they said he isn't getting anything from food anymore. His swallowing is a massive concern. Concerns about choking and him being alone.
    he has made an informed choice not to get the peg.
    Not even sure why I'm writing. Just don't know what on earth to expect next

    #2
    MW6 It must be very difficult for you to see your dad like this, I'm sorry.

    I don't know know if you "attended hospital" with him today for a scheduled Clinic appointment or if it was an A&E visit, but I hope he was well looked after and had any questions answered.

    Given that your dad's weight is low and he has swallowing issues, I hope he is under the care of a community palliative care team or hospice, if not, I suggest he should be. This does not mean he's in the end of life stage, but he needs specialised care.

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

    Comment


      #3
      Hi MW6,
      I agree with Ellie,about palliative / hospice care is needed asap.Maybe your dad would let you attend too if anybody from these teams are coming to visit????
      Obviously you have lots of questions on how your dad will be supported at home etc.
      Can you \ or your dad find out who hospital is referring your dad to and ring asking for urgent appointment?
      Has dad been seen by speech and language or a dietician.?
      The main thing is to get an urgent health support in place to support existing symptoms and keep your dad comfortable,
      Best wishes
      Mary x

      Comment


        #4
        Thank you both. It was his regular three monthly appointment at the mnd clinic where you see the physio and nurse and speech therapist and dietician. I have been to see him today and his other arm is showing weakness too now so he is starting to really struggle without use of either hand. He is so reluctant to get help and currently myself and my brother are caring for him. We both have families and jobs so we are doing the best we can and feel so guilty.
        he is so thin now and I just dont know what to do

        Comment


          #5
          He just keeps telling the medics he is happy and fine bless him

          Comment


            #6
            Originally posted by MW6 View Post
            ... he is so thin now and I just dont know what to do
            Are you his next of kin? I wonder if his GP would talk to you and refer your dad to palliative care, not for 'treatment' but for help in 'managing' his symptoms. xx

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

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