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Guilt about Dad having PEG fitted

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    Guilt about Dad having PEG fitted

    Hi Everyone

    My Dad was diagnosed with Bulbar onset MND in September after first showing symptoms earlier this year (we thought he had had a stroke initially). He has been given a life expectancy of 3 months.

    He was advised to have a PEG fitted and although he was reluctant we convinced him it would be the best option especially for the various meds he takes for other conditions. He had it fitted 2 days ago and is still in hospital as his oxygen levels are too low for him to be discharged, and we've been told today he will be in over the weekend. His lungs are not in good shape anyway and we've told the nurses he always has low oxygen readings but they are not happy to let him out.

    He's currently in a lot of pain with the peg. It is working correctly and the wound looks good but he's really uncomfortable with the stitches. He can no longer speak and he wrote on his pad yesterday that it was the worst day of his life. I feel so guilty pushing him to have it done when he doesn't have very long to live. He said from diagnosis that he wants to be cared for at home by my Mum for as long as possible and now he's stuck in hospital.

    Its just awful seeing him so miserable and in pain knowing that he wouldn't have had it done anyway.

    Joanie He is so lucky to have a loving family around him.

    I don't know if he has had many operations before. No operation makes you feel comfortable.

    I remember constantly trying to pull a nasal feeding tube out about thirty years ago for different health issues as it was so uncomfortable.

    Hopefully you can focus on making things comfortable for him at home for when they let him out.

    When I was in recently the majority of the team didn't want to let me go home.

    It was a lovely doctor who said, his bed at home will be so much more comfortable than this one.

    Some of us are on quite a lot of pain medication, with the mixtures cutting through. Make sure you are saying to the doctors that he is in pain and needs it resolving.

    I am sure he will be appreciating every moment with you all.
    Don't feel guilty for caring.xxxx


      Joanie A warm welcome to the forum Joanie, so sorry you’ve had to join us.

      It is really, really difficult to know what to do for someone you love deeply and, if your dad were dead set against having a feeding tube, I’m sure he would not have agreed to the procedure.

      Re his oxygen levels: is his overall respiratory function being monitored, including CO2 levels?
      Any idea what his O2 level is?
      Is he being given oxygen?
      Is he breathless?

      It’s ‘normal’ to have low O2 levels with ALS once respiratory muscles are affected - if low O2 Sats were a reason for hospitalisation, most of us would be in!

      Using non-invasive ventilation (NIV) is one way of improving our breathing; has this been mentioned? I wonder if he could get one over the weekend.

      Re the pain: plenty of painkillers and maybe the plastic disc of the feeding tube is set too tight.

      Anyhoo, long and short of it, if low Sats is the only medical reason cited to keep him in hospital, then, unless they're dangerously low, that’s not a reason to deny his discharge.

      Love Ellie xx

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


        Hospital is not a prison, they cannot keep him in against his will. Every day counts with MND. Does he use a non invasive ventilator to help his breathing? My husband refused to have a PEG making things very difficult at the end.


          Joanie you only did what you thought best for your Dad with advise from medical professionals. Hopefully he is given analgesia for pain and will become more comfortable. At least it’s done now.
          My husband went in for feeding tube Two weeks ago but it didn’t go ahead as his stomach was too high for the procedure!
          Don’t be hard on yourself. Xx


            Joanie, don’t be hard on yourself. I’m certain that’s the last thing your dad wants. From what I understand, the peg should help make things easier. Hopefully, with Niv in place at home, your family can get your dad back home quickly.
            sending you hugs 🤗


              Joanie usually the worst time just after an operation, which you advised for the best of reasons, which is all we can do. hopefully his pain can be sorted as was mine, it will be useful especially for easily getting medication in him, and you can all be glad it was done. Sending love and strength to you all at this distressing time x
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!



                The pain goes away in about a week. They have a habit of putting the clip on far too tight, which adds to it. I took painkillers for about a week afterwards. You will hopefully get a visit from a nurse to loosen it. I had my done way before I needed it and glad I did, as am totally reliant on it now. It will make things easier for your Dad.
                Diagnosed 3rd November 2021 Bulbar Onset


                  Joanie I 2nd GillB re the clip being too tight. It happened to me and was in agony for 3 days until peg nurse loosened it.

                  Diagnosed May 2021 bulbar onset als.


                    Joanie I third the comment about the PEG clip being too tight. You could see it pushing into my dad when he had it done.thankfully the nurse loosened it slightly after a couple of days.

                    I'm sorry its such a difficult time for you. Please don't be hard on yourself, you've only advised what you thought was best based on medical advice. I hope they can get some support in to help with the breathing and get the pain sorted out and your Dad is home very soon. I'm sure the PEG will prove ti be very useful.


                      Hi Everyone
                      Thank you so much for your kind replies, what a wonderful bunch you are!

                      So things all changed on Friday as Dad developed a chest infection and he was going to be moved to icu but ended up on respiratory ward. The Dr wants to pump him full of antibiotics for 48 hours but agrees that if that proves futile we can bring him home, but of course we'll have to get everything in place for his care and feeding.

                      Hugs to you all x


                        Sorry forgot to add, his peg doesn't seem to be too painful now, but he's got a very bad back which he'd been having trouble with for the past 2 weeks. He admitted yesterday to my sister that he'd fallen over, he didn't tell anyone! We've told the nurses but at the moment we don't think its worth him being pulled about for xrays etc until he's on top of the chest infection


                          Hello Joanie what a pain about the chest infection. At least they are treating it.

                          Also remember that the antibiotics can play havoc with the tummy as they also knock out the good bacteria there. I have some form of active yoghurt most days to try and keep my bacteria happy and fed so that they don't feel left out.

                          Look after yourself.
                          Big hugs


                            Joanie thanks for updating us. 🤞that the antibiotics work, and thinking of you, hoping he’ll be at home soon x
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!


                              Originally posted by Joanie View Post
                              ... we'll have to get everything in place for his care and feeding.
                              Given that your Dad is on a respiratory ward, was breathing assistance mentioned? Perhaps it's not required if all his difficulties are due to the chest infection.

                              Btw, could he not be brought for a chest X-ray in his bed? I was X-rayed in my bed, sat up, plate snook in behind my back, X-rays taken, Bob's your uncle - no palaver whatsoever.

                              Hope the meds sort him out quickly. xx

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