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Thread: Dealing with the loss of someone with MND

  1. #11
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    Aawww...Caroline your post makes me wish I could give you a big hug as well. For anyone that lost a love knows grief really is a process and a very individual one at that. Be good, patient, and kind to yourself, and just as importantly take all the resources available to assist you in your process including all those that love and understand.

    Much love with plenty of hugs, and a very big group hug to all still grieving
    CC xoxo
    .

  2. #12
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    Thank you everyone, it really does help to be able to hear from other people who have been through the same. I know everybody has lost someone they love at some point but to have people who have had the experience of MND with a love one is comforting. It all sounds like you are now coping ok with the passing of your loved ones which gives me hope I will be ok too.
    Yesterday a friend came round and took me for a walk to the shop. It was a big deal for me, I felt like I shouldn't be out walking and doing normal things, I just wanted to be curled up at home with my husband. I felt so guilty I cried. They told me it would be good for me and they were right but doing just the little things don't seem right. Like yesterday my husband made me laugh, then I cried because I shouldn't be laughing two days after it happened.
    I try and be ok round everyone, and hold in the tears until its just me and my husband. He is very good, he makes me think about the good things, and nice memories. I think today I am going to start writing down all my favourite things about my mum and my favourite memories.
    Tomorrow my god mum is coming with me, my husband and brother to the funeral home where we need to begin planning, we also need to do official stuff like register the death, all things I'm scared about.
    Today is the day I'd always visit my mum, I feel bad because last Sunday I only stopped for an hour and I was going to spend more time this weekend but now it's too late.
    One of the most difficult things right now is my mum had a live in carer who has lived with my mum since sept 2012 (to answer the question earlier my mum and dad divorced when I was one and she never remarried). She has become part of our family, she was on holiday in Uganda when this happened and I just want her back to be able to tell her a hug her. She is so special and she made my mums last 16 months fun, she didn't just look after mum she became a friend, she really is amazing and I just want her back home for a hug and to cry with her.

    I'm sorry I have blabbed on, I really do appreciate people replying and sharing their own experiences, it's good to know it will be ok xxx

  3. #13
    Forum Member AP1978's Avatar
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    All of those feelings you are having are so normal. I think we all feel guilty at times, even for the smallest things like you say, for laughing and going for a walk to the shop! Try not to be so hard on yourself, we can never predict when this disease is going to take a turn for the worst. Your mum sounds like she was well looked after by family and her carer. I'm sure you will get great comfort when you are able to see your mums carer again. There's no right or wrong in how to deal with this, just try not to be so tough on yourself, your mum wouldnt want you to. I know its easier said than done. I felt guilty over very minor thing but at the time they felt huge. You will find the strength to plan a lovely send off for your mum, make her proud of you, she'll certainly be watching. Lots of hugs xxx

  4. #14
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    My hear goes out to all of you, I know that one day I will be in the same position and I push it to the back of my mind as it is too painful to think about.

    Caroline I hope that the counselling helps. You have always been so supportive and positive for everyone, I know that your family and friends are looking after you but sometimes to unload the burden on someone else not actually involved may help.

    Michmarsh you will find the strength to get over the next few days with the love of your family. My thoughts will be with you during this very hard time.

    Big hugs and love to everyone. Diane

  5. #15
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    Mich - Thinking of you today going to the funeral directors and beginning all the arrangements for your mum's funeral. Not an easy time, but remember that they will help you through as I am sure your family will. I too am sending hugs and love.

    Caroline - what lovely plans - don't forget prodding them to have fun and sharing it with them, not just the homework - hope those days are a long time off. My mum prepared and left lovely cards and notebooks, postcards, christmas/ brithday cards for her grandchildren. I have some cards from her too, some I have read and some I am saving for a day when I really need her wisdom/love. I will never forget the difficulty she had in writing those cards/ messages for family, friends, carers - the tears and strength and memories that surrounded her, dreams that she knew would have to be set aside. My heart goes out to you and your family, whatever way you prepare as an individual and as a family it is not an easy journey but I know that love and openess will make it easier. keep strong and cherish life and family and friendships. x

    Caz, counselling can be helpful if you find the right person/approach. My girls have been linked in with Jeremiah's Journey, a local charity supporting children who have lost loved ones, they have supported them look at new memories, their feelings etc all in a creative way. For some people talking helps, for others it can be quiet time or even joining clubs/ activities - hope you find the right way for you to get through this difficult time

    sending you all lots of love. Mich - you take care, think about the lovely times you shared and the good friends that helped your mum through this.
    luce

  6. #16
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    Hi all,
    I haven't been on for awhile so I thought I'd say hi. I had a bad day yesterday I just broke down in tears and couldn't stop, I don't know what triggered it. Altos changed since my original post, it's now 6 and a half weeks since mum passed, in some ways I think I'm doing ok in others I freak out. I'm back at work and at Uni so trying to get back to normal now. We've had to put mums house on the market which is the house I grew up in and mums home for the last 30 years, it sold straight away so me and my brother are now having to clear that out which is hard. The equipment services came and took the wheel chair, bed, car etc away in less than week since mum passed it's all just happening so quick.
    The funeral went well, I got up and did a reading about mum and there were lots of people there.
    Although I feel like on the outside I look like I'm doing ok to others I don't feel it on the inside at all. I feel like mum is still here sat in her ******* at home but I just keep having visions in my head of the policeman knocking on my door telling mum had died, then me seeing her in her bed straight after then at the chapel of rest. It's hard it's like I've seen her and she's gone but I still think she is here. The last week I saw mum I had an exam, I got my results this week, the first thing I did was to text her and tell her the results then I remembered she wasn't here. It's all just so surreal, it just didn't happen the way I thought, it was just a normal day, she wasn't in the last stages like you read, I thought there would be more time. In some ways I'm great full, she was getting frustrated with the pain in her neck, the rig feed was making her feel sick all the time, she couldn't sit comfortably so now it's good because she's not in pain. What I really wish was that she never had MND at all and I still had my mum, it's not until after people go you really appreciate them and all they have done for you, even at the end she still made me and my brother her priority even though she was so sick.
    I'm glad she is at peace now but I hate myself for not bring there when it happened and I'm finding it hard to forgive myself for that. I'm finding hard too that I don't seem to know what I believe in. People keep saying to me that she can still see me but I don't know., I just want my mum back.

    I'm sorry I've waffled on, I just needed to talk to people who understand xx

  7. #17
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    My mum and me

    Hello I lost my mum a year ago she had mnd.she was 57 when we found out and she died three years later.a year on and I still I'm still no further forward it was the worst suffering iv ever seen it still gives me nightmares.and if things could get any worse she had genetic fmnd.is there anyone out there with the same nightmares as me and my family as there is a 50% chance of me suffering the same.x

  8. #18
    Forum Member john's Avatar
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    Hi Oscar,

    It crops up as a topic here from time to time. There is a thread from last October on the subject. I am not sure if it will help but there were useful links to sources of information and help from mnda. See post 3 in the thread.
    May help you to come to a decision.

    http://forum.mndassociation.org/show...light=Familial

    John

  9. #19
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    Hi Annette, my Mum was diagnosed with mnd bubar last week at only 56 years old. My child is only 1 year old and the saddest thing for me is that she would have had so much fun with him. I'm also worried that every time I talk to him about her in years to come I'll feel unbearably sad.

  10. #20
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    Dear Mich
    I'm so so sorry about your mum. I can imagine how you feel. My dad is doing quite bad at the moment and everyday I'm afraid I will have a phone call from my mom in Poland telling me he is gone. I too can't imagine life without my dad as he is the most wonderful man in the world. He is still with us but I'm crying all the time because I know one day he will not be gone. I'm extremely close to both of my parents and just can't imagine live without any of them. I'm 35 years old but when I'm in Poland I'm still seating on my dad's lap like a little girl. I have kids too 11 years old and 2,5 years old. About two years ago my dad said he will never see my little girl growing up. I don't know why he said this but every time I'm thinking about it makes me very very sad because I know this is the true.... He will never see her growing up. She is the only granddaughter he has and she is his liitle girl.... Nothing can preper us for the pain we going through and we just hope one day will be better. I can totally understand you and I'm with you with all my heart!!!! I feel bad because I can't help my mum as much as I would like to. Im in the UK she is far far away in Poland. We are talking everyday on Skype and I always have to hold my tears back as I don't want to upset my lovely dad. Again I'm so sorry and believe me I know how hard it is when the person you loved the most is gone. I'm crying now as I'm writing this because I know you are in pain..... I just hope it will get better with time... I'm sending you all my love and please write to all of us because we can all understand and feel your pain.....
    Lots of Love
    A

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