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Thread: Dealing with the loss of someone with MND

  1. #1
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    Dealing with the loss of someone with MND

    Hi,

    I'm 29 years old and on Thursday I lost my mum to MND after a long battle.
    My mum was 57 when she passed away and she was diagnosed in 2002. Initially she noticed the loss of movement in her toes, which then progressed to her legs, then swallowing then her neck and arms began to go too and speech was becoming difficult. She died peacefully in her sleep in her own bed which is of comfort but it was so out of the blue. Just this Sunday we were making plans to see the show Lion King in September and on Tuesday she text me like normal. I wasn't ready for this and it's a shock. The only comfort I am getting is knowing that she was becoming increasing frustrated with her neck not supporting her head and her difficulty to speak for long periods and she passed before it became any worse.
    The reason I'm posting on here is whilst I appreciate other people's kind wishes I want to talk to people who have been through this with their own parents and loved ones. Right now I feel lost and alone, I'm surrounded by people but I just want my mum, I want that one last conversation, I wish I was there at the time, I just want to know she was ok. X

  2. #2
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    Hi
    So sorry to hear about your mum dying recently. My mum died on the Queens Jubilee (just 60). Obviously I can't comment on if your mum was OK or not as I wasn't there however since you say that she died peacefully in her own bed then she probably was OK and I reckon still will be. My mum died peacefully at home, in the days before she died typed to us that she felt a presence near her, holding her hand, she was very calm about dying - knowing that it wasn't the end but a beginning. I'd like to think that your mum also had 'company' to be with her. That one last conversation.... perhaps go for a walk and talk to her or sit and think through what you would want to say- you never know it may still reach her. My girls often send hugs and kisses to their nan and talk of her every day, snuggle in her blankets, sometimes crying, sometimes laughing, she feels very much part of our life just absent in physical form. Look out for white feathers as it could be your mum telling you she is still around
    love Lucy
    PS We went with my mum to see the Lion King, next Sunday we will be going again (this time with my little one) who is excited to see a show that my mum had seen as she was too young to come before. Book to see it

  3. #3
    Forum Member AP1978's Avatar
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    Hi,
    really feel for you losing your mum. I too lost my mum in December 2013. My mum was diagnosed with mnd bulbar in 2010 so she lost speech, eating etc early on, even though you know its a terminal illness I don't think you ever believe that it will happen to your own do you. My mums death was also quite sudden as she seemed quite well only a few days before. Its so hard to think that this person that you loved so much is never coming back, I don't think it's something that you'll ever accept, you just learn to cope with it as time goes on. I cry every day about my mum, my dad and I have been watching lots of recordings of her on holidays etc, I find real comfort in remembering all of the great times that we had with her. Share your thoughts on here, I think its easier than talking to family etc. My husband is fab but I still don't share my feelings with him as I truly don't think people can understand how you're feeling unless they've been through it.
    Annette xxx

  4. #4
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    Hi
    Sorry to hear about your mum,my husband passed away last April and although he had lived with mnd for several years the end was very sudden
    and it is a shock .i know exactly what you mean about that last conversation but like luce has already said talk to your mum say what your thinking it is also good if you have family and friends around to to support you .i still take one day at a time and cry laugh get angry its all normal at this difficult time
    Take care love Petal
    ,

  5. #5
    Forum Member AP1978's Avatar
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    Lucy, I talk about my mum to the kids every day, I promised my mum I would never let them forget her! We talk to her all the time :-) My youngest one is only 16months but my mum never even thought she would live to see her so this makes me really happy that she lived just past her 1st birthday!I may sound mad but I love talking as if mums here, makes me feel better xxx

  6. #6
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    I am so sorry that you have lost your mum. It does sound like she passed away in the most comfortable way.

    They are lovely ideas Lucy. When my father in law passed away unexpectedly although following illness, I really felt his presence, like he was watching us and smiling at how we were all working together to get through. My MIL says strange things still happen 3 years later, like burnt toast smells sporadically appearing in a bedroom or lounge. It was a strange experience at the time as my grandmother died 20 mins before FIL and we had early snow, making things seem even more unreal.

    I think Lucy Maybe right, perhaps your mum is still with you, I know I plan on watching out for my children when my time to leave them comes. I'm going to live in the corner of the *******, over the table where they eat and do homework, ready to mysteriously guide them if necessary.

    And I'm going to be at their weddings if they get married.

    Caroline
    xxx


    The xxxxxxx replaces the word beginning with k describing a room in the house where food is prepared, we have a table where my family eat and do homework. I think the 'k' word is banned because of inappropriate marketing on the forum.
    Last edited by ccvsd; 12th March 2014 at 11:05.

  7. #7
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    HI,
    my sister in law (I just call her my sister) died 8 months ago today. of Bulbar MND....we talk about her every day, something will happen to make my husband and I think of her....today when I got my free coffee in Waitrose I laughed because she would never have queued up just for the free coffee, she would jokingly say that she wasn't prepared to queue....I would have said that if something was free a small queue wouldn't stop me taking advantage. We miss her so much, but as Lucy says I do feel her spirit is with us. I had a dream the other night, in the dream it was all a mistake and she could talk and in my dream I actually thought that the people on the Forum would now think I was a fake! In my dream she hugged me, and when I woke up I was so happy, I haven't had her in a dream before.
    I do believe in white feathers and also jet stream kisses. So do come on this Forum to share your sadness, but do speak and act as if she was still around I hope it will be a comfort to you, but it is very early days for you and you need to take time just for thinking about her. She had a peaceful death in her own bed and you must be grateful for that, but oh how you must miss her, I am so sorry.
    with love and a hug or two
    XXXXXXXXXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXXXXX

  8. #8
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    Hi Mich

    Sorry for your loss, which is a tremendous one. Also lost my own my Mom fairly young (early twenties) it's not easy to say the least, but time is an enourmous helper, as you will see with time. Do hope you take comfort that your Mom's journey with this illness has ended, and in my beliefs is in a far better place, whole and healthy again, and know you will see her again.

    Your still young with all the good things in life still ahead for you. Be courageous to continue forward without her, keep her forever in your heart and mind, and honor her by being the best person you can be. All the best to you.

    CCxxx
    Last edited by ccinjersey; 25th January 2014 at 19:22.
    .

  9. #9
    Forum Member john's Avatar
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    Hi Mich,

    Welcome to the forum and so sorry you have a need to be here. I lost my wife at the age of 59 almost 2 years ago and still feel the loss everyday and wish things could have been different. You don't mention Dad but if he is still around hopefully you can draw strength and comfort from each other. 12 years for your Mum is a very long time and it sounds like she still had reasonable quality of life up to the end which is something to give thanks for. As Luce says keep her memory alive and try and focus on the good times, I am sure your Mum would want nothing else for you. Keep close to family and friends who know your situation . They will understand and support in the time ahead. Keep talking to your Mum and I am sure you will feel her presence with you still.
    If you feel like screaming come on here and do just that.

    John

  10. #10
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    if I could reach through my computer and hug you it would be the biggest hug ever.i lost rob my husband in feb last year.he only had it 11 months and was 50.he too passed in his sleep which was a huge shock as we thought we still had a few months left at least.my kids are 27 23 and 19 and we still struggle with the injustice of it.i am off work as I think as the anniversary is looming I have really just collapsed and cry more now than I have before.i am going to have counselling as previously thought well how can that help its not going to bring him back but a neighbour has convinced me to do it.i feel pretty lost at the moment and just say im fine to everyone but im not.we were going to do so much and it has all been snatched away.i have felt he is around and that is reassuring and try to remember all the good times we had as a family.when I get the drill or toolbox out I go look what im doing now and I can see him shaking his head saying you don't do it like that!as john said come on here and say exactly how you are feeling.we are all in the same boat and are very very understanding.sending you much love .caroline xxxx

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