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Anticipatory Grief

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    It must be impossibly difficult to be a full time support for a loved one with MND and then be left alone. MND carers are heroes !

    Sending you big hugs Bowler and Shrew. Ann and Mick were fortunate to have your love and care.

    Love Debbie x


      Deb 😘


        We are all born and we all die. Time is the only thing that helps and it's a precious commodity. Try to focus on the good things and not dwell on the past. Just saying 😃x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


          matthew55 cheers.....good to have you back 😉


            Reading all the positive things on here Lifts your spirit and makes you feel less isolated Lost my beautiful Jan in sept . Thanks everyone


              Thanks for all the links.

              I will look into it.

              Felt this with my mum and dad with dementia, still here of a fashion in 2022. Dealing with it since 2006.

              Thomas supported me through out and we put so much off because of my parents and now he has this terrible disease for the last 18 months.

              I will be alone and an only child.

              But I am tired as well.

              Glad they are here all 3 of my loved ones but it is still a grief because you are just waiting as neither is curable.

              You are just waiting for the next loss. Not death but loss of ability. Another little death (not in the good way).

              This forum and others on Facebook keep me going, as I know I am not alone with these strange emotions.

              It is a strange limbo.

              Only 48, wonder what my life will be will be like "after". Assuming I out live everyone I am caring for.

              Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


                I know what you mean, my life is now one of three distinct things, the blissful "before" diagnosis, our old wonderful life where we did things together and planned our future, the "now", where we both grieve for our old life, the loss of so many things as he loses the ability to do something else, the grief of losing him before I lose him, the grief of having the next 30 years together taken from us, the grief of being alone in the future, the grief of the physical heartbreak I feel in watching him fade from the man he was, and the "after" where I will have a very different life from what I wanted and we had planned and the guilt I feel when I think about the "after"

                In the "now" the grief is very acute, the tears are constantly prickling the backs of my eyes. I don't know how the people with this awful disease cope, hubby doesn't complain, but I see the fear, pain and upset in his eyes. We have no idea how long is left, we have and continue, to do as much as is possible to make memories and enjoy what time is left but that doesn't take away the current grief. Days like today, valentines day, Christmas etc are hard as they are a reminder that we haven't got the future that we wanted. I don't look forward to my future as it will be without him. I am having counselling which does help, but doesn't change the fact that I am losing bits of him every day.

                Grief is certainly not only after you life someone.
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                Sense of humour intact throughout.

                Sadly passed away peacefully 2/9/22



                  You describe it so well. The blissful "before"

                  Hugs and strength

                  Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


                    Huge hugs to everyone here. My husband is in his 5th year with MND. Like Shrew I’ve cried every day since. My heart goes out to you all and may you find some comfort within yourselves.xx


                      Stephen is in his 4th year since diagnosis but I'm sure its been around longer than that. With mnd and ftd I try not to look to far behind or forward. I don't know what to expect so I'm just taking each day as it comes. Making the most of what we have. I think it's just trying to cope. Sometimes it's not so bad, sometimes its dreadful. Today it feels ok. Goodness knows what tomorrow will be like but it might be fine so that's good enough for me. That's all I can do. I know I could do with a room where I could scream and yell but I'm trying to be calm. I'm just trying to be as normal as possible. It's not easy. 😐
                      when i can think of something profound i will update this.