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Thread: Dad passed away yesterday

  1. #1
    Forum Member
    Join Date
    Aug 2015

    Dad passed away yesterday

    Hi all

    Just wanted to let you know that my dad passed away yesterday. His battle with the disease was only 5 months (although we suspect he already slowed down from about two years ago).

    He went into hospital three weeks ago to have the PEG put in under conscious sedation, but the doctors discovered he had a hiatus hernia. In order to fix the hernia, he would have to undergo a general anaesthetic which, with a lung capacity of 41%, was not an option for us.

    He was discharged two days later with a naso-gastric tube. His care on the first night in hospital was not great...the staff were rough with him so we sent our night nurse to be with him the second night. Sadly the feed that went through ngt gave him the most horrendous diarrhoea which was really awful for him as he had cramps.

    A week later he pulled out the feeding tube twice and the doctor said it would be best to leave it out as is was obviously uncomfortable for him. The last ten days he sucked on water via a 'sponge on a stick' (a tiny sponge on a lollipop type stick..highly recommended) which I got at a hospital pharmacy.

    He survived 10 days without nutrition and only stopped communicating (still speaking very slurred and with a letter board) two days before he passed away. He was most definitely 'with it and with us' until then. He was in our living room in a hospital bed and loved the steady flow of visitors coming in and out. Plus he had full control of the TV remote which really pleased him.

    I have decided that I am going to start hosting fundraisers for both MND and The I will keep you informed of my activities.

    Sending love, light and peace to you all,

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Sorry for your and your family's loss Jan,

    It's sad when we can't do more, at least he has peace now.

    Lots of love, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member
    Join Date
    Nov 2014
    Such sad news, Jan. Thinking of you and your family.

  4. #4
    Forum Member
    Join Date
    Mar 2014
    Hello Jan. Thanks for letting us know about dad. This is such a horrendous disease.

    Our thoughts and prayers go out to you and all the family

    Much love

    Joycie and Peter x

  5. #5
    Forum Member Dude's Avatar
    Join Date
    May 2015
    So sorry Jan. God bless. Dude x

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    My condolences to you Jan.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #7
    Forum Member john's Avatar
    Join Date
    Sep 2011
    Leyburn , North yorks.
    So sorry to hear of Dad's passing. Mixed feelings of relief for him and sadness for his passing. Wishing you every strength for the days ahead.


  8. #8
    Forum Member
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    Apr 2015
    Very sorry to hear of your Dad's passing, our sympathy is with you and your family, John

  9. #9
    Forum Member
    Join Date
    May 2015
    Dear Jan. So sorry to hear your sad news. Our thoughts and prayers are with you at this time. Philip and Carol

  10. #10
    Forum Member Jan's Avatar
    Join Date
    Jun 2014
    Ashford Kent
    From one Jan to another I am very sorry to hear of your loss xx

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