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  • SueM
    replied
    Jane I am so sorry for your loss. This is such a crap disease it comes along and spoils not just the life of the sufferer but that of their loved ones. Hope everything becomes a little easier in time xx

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  • Tess
    replied
    Sorry for your loss

    xx

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  • matthew55
    replied
    Stephen was an elite. Nuff said.

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  • Graham
    replied
    Hi Jane,

    You are exactly right, 'bonus years'. I see it as 'overtime' and luvin it.

    Our Stephen Hawking set the benchmark, another 30 years for me please.

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  • Jane northwales
    replied
    Thank you all for your kindness, I collected my husband today and bought him home, I feel comforted knowing I have him safe, pain free and without any fear. What the next steps will be are not a priority, I need to nurse myself and as you have all said allow myself to grieve the loss if my husband and the impact that MND has had on our lives. I also need to celebrate the years that we called our bonus years and the memories and love we had during that time.
    I pray for a cure xxx

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  • matthew55
    replied
    My advice is get the emotions out and proud, Get incapacitated, break things, Vocal rage and floods of tears. You can make others up as you go along. Do any of this enough times and eventually you will realise what you're doing is for you and you alone. The love lasts beyond time but the anger fades over time. Life goes on. šŸ˜šŸ‘x

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  • Suefromwakey
    replied
    Jane I am sorry to hear about your husband and his 7 year long battle with this thing,

    The anticipatory grief you had, I think there's a thread on here about it somewhere, I do it all the time, what will I do when, where will I go when, things I shall have to do on my own etc etc..............its a horrid thing to cope with because the person is probably still/was sat next to you.......

    Although AG is traumatic in itself for me Its not like actual grief which is all consuming and encompassing and what you will be feeling now, my heart breaks for you

    Sue

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  • denise
    replied
    jane i dont know what to say.
    the sadness the disease brings and all the stress and tiredness. the worry and anticipation of what is going to happen next and when. and the grief. its a long and horrible journey. i am so sorry i send love and hugs
    denise xxx

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  • richard
    replied
    Iā€™m really sorry for you Jane

    Richard

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  • shrew
    replied
    So sorry for your loss Jane. I wish that I had some words to help you. We had just short of a year from diagnosis, I miss him every day. I wish you strength in the coming weeks and months xx

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  • Heather R
    replied
    So sorry for your loss, Jane. And as you say, a more difficult time with COVID and all the restrictions keeping us apart. MND feels like a slow death to me, as we lose the function of parts of ourselves. Take care. Love, Heather x

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  • GaryM
    replied
    I'm sorry for your loss Jane. I feel the same about Covid. I might not see the year out but I just want to be able to have visitors in the spring and summer. Roll on 29th March.

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  • Deb
    replied
    I am so very sorry for the loss of your beloved husband Jane.

    Love Debbie x

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  • Ellie
    replied
    Heartfelt condolences to you, Jane.

    Love Ellie.

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  • Beemer
    replied
    Originally posted by Jane northwales View Post
    Hi
    since writing the last post my beautiful husband has lost his seven year battle with MND, nothing can prepare you for the loss even when you have been living with grief alongside the illness.
    what is more shocking is that there is no support when the battle has been lost. My advice to all is to try and make links during the end stages of the illness to ensure that you are supported and given strength to manage the loss.
    xxx
    So sorry to hear this Jane, it must be hard to live with grief wondering when the inevitable will happen.
    It is not fair on our carer/partners, sometimes I wish the end would speed up so the living grief is not so long, but how, without being dramatic and causing anguish for your loved one?

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