Online forums

Before you can post or reply in these forums, please complete your profile

Complete your profile

Before you can post or reply in these forums, please join our online community.

Forum membership is open to anyone residing in Australia.

Join the online community Community rules Coping during the Coronavirus outbreak

Forums / Grief and loss / Lost mum to MND not sure how to cope

Topic: Lost mum to MND not sure how to cope

4 posts, 0 answered
  1. Whispa
    Whispa avatar
    5 posts
    21 May 2021

    Hi all.
    I lost my mum recently to what looks like it was a rare variant of MND. She had been getting weaker for a year or more, speech was severely affected and eventually swallowing and breathing. She never actually got paralysed tho, and until 10 days before she died she was still living independently, but struggling more than she let on. I was her carer and visited daily, driving 40 mins each way. We had been going to every doctor to try get help, but between Covid and the fact that on paper she was still functioning she was never taken very serious, and was never seen by a neurologist until it was too late. I knew she was sick but we all thought she would get answers and get better. Death cert says MND but they still have doubts about it, but either way the ending was the same.
    The things is I can’t get past the anger. I’m 32, have 2 kids, plus now also my teenage nephew who my mum was raising before she died. I have a great partner and home, so I need to keep going, but I’m so damn angry about it all, and then I swing between anger and bawling my eyes out. It breaks my heart every single time I think of how scared mum must have been, how she just wasn’t ready and she didn’t deserve it and how helpless and vulnerable she was on that hospital bed. I’m not angry at the doctors as I think if she had been diagnosed her last few months would have been even more horrible, I’m just angry at how she must have felt. I’m keeping busy with my horses, doing the things with them I didn’t have time for before, I’m seeing a councillor and focusing on my family but nothing is helping. My mind keeps saying what’s the point of trying anything in a world that’s just so evil and unfair. It’s changed my views on everything about life why bother being a good person when good people get punishments like that, my mum just have to others her whole life. It’s not her death I can’t handle, it’s the cruel ness and suffering of MND I can’t get out of my mind. She was almost childlike by the end and so vulnerable. And I stayed with her day and night in hospital and had to authorise sedation and that was hard. Not sure what other coping methods people may have who have been through a loss to MND or any cruel disease, I just need some honest words maybe, so I can stop the urge to beat everyone who comes near me with a stick so I can sit and sulk alone ha

    thanks for reading this so far, not sure how much sense I’ve made.

  2. Willow Jude
    blueVoices member
    • A member of beyondblue's blueVoices community
    Willow Jude avatar
    30 posts
    21 May 2021 in reply to Whispa

    Hi Whispa,

    Thank you for your post. It takes a lot of courage to recognise when we might need some extra support, so it's great that you've reached out to the forums.

    Your current situation sounds very tough, and it's understandable that you'd be struggling. One of my childhood friends has lost close family members to MND, and while I could never know what it's like, I do empathise with how hard it must be.

    I can't offer any personal insight into coping with the loss of a loved one to disease, but hopefully some other forum members will be able to assist you in this area. Beyond Blue also has some resources to assist those in your situation - Google 'Beyond blue grief and loss' and you should find links to some information that could be helpful, as well as ways to access additional support.

    I can feel your pain through your post, and I sincerely hope you are able to find ways to help support you through it. Please continue to post to the forums whenever you need.


  3. Summer Rose
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    • A member of beyondblue's blueVoices community
    Summer Rose avatar
    1547 posts
    21 May 2021 in reply to Whispa

    Hi Whispa

    Please accept my deepest condolences for the loss of your mum. I know you’re in terrible pain right now and I’m sending you a hug.

    I lost my mum about 18 months ago to cancer. It started in her lungs and spread to her bones. At the end, she multiple tumours pressing on her spine and lost the use of an arm. She was in unbearable pain and incredibly weak and thin.

    It was horrific and like you I remember feeling very angry at the unfairness of it all. My mum suffered more than any person should ever have to—why her?

    You asked for some honest words to help make sense of it all, so after grieving and thinking here goes ...

    We all have to go and very few of us get to choose how. Your mother (and mine) got dealt a lousy hand and it’s a bitter pill to swallow. It will never make sense and is going to take time to accept.

    But throughout the suffering you and your mother got time to say goodbye. There were no doubt smiles and hugs and loving words exchanged. Even in quiet stillness your presence would have been a great comfort to your mum.

    You were able to wrap your mum in love and support and be there for her as she faced her darkest days. This generous selfless act of love lives in both of your hearts. MND can’t take that from you or your mother.

    I know you are tortured by how your mum must have felt. My take, based on what you’ve shared, is that your mum felt loved, proud of you —her amazing caring daughter—and safe knowing she had you keeping watch over her.

    You take care. Be kind to yourself. Give yourself time to heal.

    Post any time. Kind thoughts to you

  4. pl515p1
    pl515p1 avatar
    107 posts
    22 May 2021 in reply to Whispa

    Hello Whispa,

    There are some similarities between us, so I hope you do not mind if I write this.

    I lost my mum earlier this year, she suffered a rare form of Ataxia before finally succumbing to Cancer.
    It robbed her of her independence and vitality, she actually loved horse rising, and I have photos of her growing up around horses.

    Animals are truly remarkable, they can say so much with a simple gesture, and I think for you to have them is something to cherish and hold onto, even the smallest flicker of light is sometimes enough to hold the darkness at bay for awhile.

    I see in your words that you are a caring, thoughtful and beautiful person, and I am sure your mother is proud of you, for you to be by her side throughout must have created a feeling of immense love in her heart, a deep love that is something we can only hope to have in our lives.

    You are incredibly brave and strong, to go through all of this whilst also raising a family, you are inspiring to me in many ways.

    As I also lost my dad in September, I too am struggling to come to terms with why, I'm angry at how unjust life can be.

    I think of all my parents had to endure, they lost their two little daughters, my sisters, tragically.
    They separated so I was not around mum as much as I should have been, and that is a guilt that I must live with,
    I think of all they endured, and wonder why they deserved so much pain, for mum to have to endure losing herself before passing, felt like an insult that was far too cruel.

    There are so many cruel and abusive people in this world who seem to go unpunished and live free, yet people who give and love are snatched for us far too soon, sometimes I feel I don't understand anything anymore, principles I once lived by all seem for nothing, I have shouted at the world, blamed everyone, from religion that was not there, or to the doctors who do not know why dad passed away, I even scream at myself for not being a better son.

    At times I have I even punched a wall.

    I too wonder about what is the point of being a good person, but then I think, that my parents were incredible people, and they raised me to be the man I am, so I try to honour them by being who they know me to be, who they raised me to be, not who the cruel world is trying to make me turn into.

    I am incredibly sorry for your loss, please know that you are not alone, I also want to thank you for giving me inspiration, and hope you can see yourself for the wonderful person you are.

    Take Care.

Stay in touch with us

Sign up below for regular emails filled with information, advice and support for you or your loved ones.

Sign me up