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    Living grief

    Can you live with bereavement when your husband, wife or partner is alive??? It feels so self indulgent to feel such loss when your husband is next to you.
    I tell people we are on a bonus year, another Christmas, our seventh since diagnosis. We should feel blessed but I feel cheated and worry that my memories of the good times are being replaced by such grief and loss for the man that MND has robbed me of.
    How do you deal with living grief?

    #2
    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

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      #3
      So sorry for your loss and nothing works except time. I honestly believe that he is in a better place. 🙂😍x

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        #4
        It is only three weeks since my husband passed away, I know his suffering has ended but the void left is enormous, what makes it harder is the thought that time was wasted due to COVID and the restrictions we had for the last year of his life. Time is so precious when the fight is against MND where there is no true time scale.

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          #5
          Sadly the pain takes a long time, when my baby daughter died it was five years before I could face the world. I didn't have the love and support on here to help me. But you do. x

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            #6
            I’m sorry for your loss Jane. Take care, Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

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              #7
              Please accept my condolences Jane and don’t forget that we are here if you want moral support.
              I’m going to do this even if it kills me!

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                #8
                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?
                Diagnosed 2nd Jan 2020
                Both arms/shoulders affected, left worse than right.
                Progressive Muscular Atrophy suspected

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                  #9
                  Heartfelt condolences to you, Jane.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #10
                    I am so very sorry for the loss of your beloved husband Jane.

                    Love Debbie x

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                      #11
                      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.
                      Each day is made easier with a bit of humour.

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                        #12
                        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
                        Diagnosed July 2020, ALS bulbar onset.

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                          #13
                          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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                            #14
                            I’m really sorry for you Jane

                            Richard
                            Richard

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                              #15
                              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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