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Thread: Grief

  1. #1


    Hello. I'm just joining this forum and looking for advice from people who have lost a loved one to MND as I am finding it difficult to cope and to not focus on my Dad's last few months when he was really suffering. I know I should be glad he is at peace now and try remember the good times but I can't let go of the memories at the end. I see him struggling to breathe and not being able to move or speak and I feel haunted by it. Does it get easier?
    Thanks for listening xx

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Nic and welcome to the forum;

    I'm not really the person to answer or give you advice but there are a couple of good threads on this subject. There are also people that look in every week or so.

    Things do get easier with time, I'm sure that you done everything possible for your Dad and that he did appreciate that and just your company as well.

    Hugs 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
    I'm sorry you lost your dad to MND. You don't say how recently you lost him. I lost my mum nearly two years ago. I wish she hadn't had to go what she went through and like you I try to focus on the good times.

    I've read you don't really get over losing a loved one but learn to live without them. The process must be different for everyone but there are apparently recognised stages which you go through (sometimes going backwards and forwards between them). Perhaps counselling could help if you haven't tried it.

    I did have a couple of sessions but it's not really my cup of tea. I'm honestly not in the same place as when mum was diagnosed or when she died but occasionally something takes me straight back there. I don't know if that will ever stop. It's such a devastating time that I don't suppose it will.

    I wish you peace of mind.

  4. #4
    Hi Nic, So sorry you are struggling, i could have written your post myself, i lost my brother in May, and feel just the same as you, finding it really hard to get his last few weeks/months out of my head, i think that Mnd is such a cruel devastating illness, and you just can't seem come to terms of seeing your loved one struggle.

    Does it get any easier ?? Oh i hope so, they say focus on the good times, and i try that as i'm sure you do too, time is a healer......I hope so,

    Nic, someone will come along with better advice for you i;m sure, but just had to let you know, you are not alone in the way you feel, and i'm sure with time, we will be able to focus on other things ( good times ) i see you are in West Yorkshire, as am i.

    I wish you well, and hope you can find some peace, my thoughts are with you. xx

  5. #5
    Thanks everyone for your kind words. We lost Dad in April this year after diagnosis one year ago today so it was fast. I feel so guilty as I was away for 2 months as my husband was critically ill in ICU and I couldn't leave him. By the time I saw Dad after those 2 months the change was heartbreaking & I can't forget how ill he looked. I know it's silly to beat myself up about not being there but I hate that I missed that precious time. Candle - I'm so sorry to hear about your Mum & I hope you are doing ok. I'm waiting on some counselling & hope it will help & I hope you have found ways to try & cope. Buttercup - so sorry for your loss. I really do feel for you and I hope that this does get better with time for everyone. Thank you again - it's difficult to talk about this with people who have no experience of MND as it's so much more than the loss of a loved one & people don't really get that it's what you watch them go through & the suffering you see before the ultimate loss. Take care xx

  6. #6
    Sorry to hear about your losses and the pain you are suffering now. Those of us with MND also go through a grieving process as we lose so much in our day-to-day lives but also our futures which we can no longer plan. The grieving process is indeed a complex and very personal path way with acknowledged emotional stages which can occur in any order and be revisited when we need least expect it. If you google Kubler-Ross you will find her theory of grieving and the stages within it and may find it helpful to know that whatever you're feeling it is completely normal and a process, however painful it might be, that is vital for a recovery and acceptance.

    Be kind to yourself's and focus on those lovely memories for no one can take those away from you. Big hug Kc

  7. #7
    Forum Member Katrina36's Avatar
    Join Date
    Jul 2015
    Hi nic, my dad passed away last month so it's still very new and horrible for me, I seemed to think it felt awful the first week and how people say it gets easier with time, but I'm finding as time is going on, I'm finding it harder, as I think I was able to have in my head that he's just out it he's working or anything, but know that isn't the case, and I'm starting to struggle a wee but he last few days as I just wish I could see him it get a hug from him but I know I can't have these things. I have lots of good memories and then the memories from him having this mnd and losing everything, part of me is glad he is no longer suffering, but I still want him back, just not the way he was at the end... I'm always here for you to chat to if you want too ...... Katrina x

  8. #8
    Hi Nic,

    Sorry to hear of your loss. I hope your husband is better now. I lost my dad to MND 2 years ago. It was a bit of a double whammy as a year before that I lost my mum suddenly who was the main carer for dad.

    It does get easier and you must first of all want to be better for the sake of all those around you if not for just for yourself. I found that the hardest part and only now and again I remind myself that I want to get back to how I was before.

    It's good to talk, even on forums. I've reached a stage where I can just about talk about things without getting too upset about it. Try not to feel guilty. Your dad would never want you to feel that and deep down he will always know what you had to do, other commitments, but I'm sure you cherished the times both before and after he was diagnosed.

    For me both my parents will always be with me. They have imprinted themselves on me through my memories (good and the bad ) they have influenced my personality and I feel that I know them well enough that I will always be able to ask them for advice and also know what they would say, whether good, bad or funny!

    I used to have dreams with both mum and dad in them and I used to wake up being both happy and sad having spent time with them again (going crazy? ) your dad wouldn't want you to be sad. Think of the things he would say to you if he heard your thoughts... he will be with you always.

    It's tough at the beginning two years later I'm still not totally over it, but I appreciate the time that I spent with them both and still love them so dearly... with them always.

  9. #9
    RSV Aus
    Dear Nic, I am so sorry for your loss.. I can only imagine how difficult this must be for you and your family. As the daughter of an incredible man with MND, my heart goes out to you. Do you mind if I ask how old your dad was when he was diagnosed? My dad is 57 and it breaks my heart every day to watch him getting weaker and weaker and there's nothing I/we/anyone can do about it. I know one day I'll be in your position and I can imagine feeling exactly the way you are now. I'm so sorry that anyone has to go through this What you said "it's difficult to talk about this with people who have no experience of MND as it's so much more than the loss of a loved one & people don't really get that it's what you watch them go through & the suffering you see before the ultimate loss" echoes how I feel exactly! People can and do try to be supportive but no one REALLY understands what it's like, how deep the pain and loss is, until you actually go through it.

    I'm sorry I probably haven't made you feel any better at all! I just wanted you to know that you're not alone and I'm sure what you're feeling is completely normal, so be kind to yourself. I think guilt is such a natural response in this context, but it's easy to lose sight of all the good things you did and the positive impact you had - I'm sure your dad understood and knew how much he was loved. I hope that time heals - I hope that with time it becomes a little easier to remember "the good times", to remember them in a positive light and without feeling the raw hurt all over again. Maybe those who have lost a loved one some time ago can shed more light on this?

    Please feel free to share your thoughts and feelings any time. I've found this forum is a great place to ask advice and find support in people who can really understand what you're going through. Counseling might also be helpful if you're open to it?

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