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Thread: Diagnosis last week, mum dying now

  1. #1
    Forum Member
    Join Date
    Jan 2020

    Diagnosis last week, mum dying now

    I don't even know what to say or if I've got the strength to write.

    Mum was diagnosed with bulbar onset MND last Tuesday and by Thursday morning was in the hospice. (Long story why diagnosis was delayed).

    She's in the final stages of life now and I cannot deal with it.

    My lovely, lovely mum. Best in the world. I am beyond heartbroken.

    I love you mum.

  2. #2
    Forum Member
    Join Date
    Jul 2018
    I am so sorry to hear this xx

  3. #3
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    I'm so sorry about your mum. You are obviously very close and it must have been such a terrible shock to hear such heartbreaking news.

    The hospice will be making sure that your mum is looked after very well. The staff there will ensure she is not in pain and she is as comfortable as possible.

    I hope you are able to spend a lot of time with your mum at the hospice and I hope you have lots of support from loved ones and friends.

    Thinking of you and your mum.
    Kayleigh x

  4. #4
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Oh Tangly, so sorry for what appears to be a fast decline of your lovely mum. I hear the courage that it took to join our forums and post a message. I hope that you find the support that you need. We stand (or sit) with you on this horrid journey. It must have been a terrible shock for you, your mum and any other loved ones.

    I hope that the hospice your mum is in understands MND fully and so she gets all the support that she needs, and that they are there for you. I send you electronic hugs and love, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #5
    Forum Member
    Join Date
    Dec 2019
    Sending love to you, how absolutely horrendous. keep strong for your Mum x

  6. #6
    Forum Member
    Join Date
    Jan 2020
    Thank you all. Yes, she is being looked after well.

    Mum was able to use a letter board I'd made her to say I love you to me this afternoon.

    I cannot imagine life without her. She is my world and the kindest person I have ever known.

    I can't stand people saying things like all life comes to an end, you wouldn't want her to suffer any more (as the neurologist said), and things like that.

    She is my mum and maybe one day I will be able to have those more philosophical thoughts but right now the pain is overwhelming and I can't see a way through it.

  7. #7
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Good morning Tangly,

    That communication from your Mum must have helped you quite a lot I guess?

    And I understand what you're saying about people saying what they think is kind but in fact simply winds you up.

    And you have my appreciation for your perception about the beginnings of the process you're starting.

    I hope you have been able to make some memories (pictures? Videos?) with your mum so that you can look back and see the lovely person that she was and how great was your relationship?


    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  8. #8
    Forum Member
    Join Date
    May 2018
    Hi Tangly,

    I am so very sorry for the terrible shock and heartbreak of your mum's diagnosis and rapid decline.

    It sounds like you have a wonderful, close and loving relationship. I hope you are supported by friends and family too.

    Thinking of you both,
    Love Debbie x

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