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Loss of mum.

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    Loss of mum.

    Mum passed away in November after a 3 year battle with MND. It was peaceful, at home, in her bed with us around. I know she is in a better place. My brother passed away 37 years ago so imagining that they are together and catching up is comforting.

    What I struggle with is the fact she made the decision to go. The second lockdown had started. Mum, dad and I Shielded from March 15th until August 20th when I want back to work. She had a change of carers at the beginning of November who did the bare minimum, her previous carer was wonderful and was due back in January. I drove from London to the south coast to visit every Friday morning to check post, do food shopping for dad and carers and see my mummy etc and drove back late evening. She could not see her 4 year old granddaughter and my brother.

    She rarely used her iPad to communicate, we managed with hand gestures; guessing and using her finger to write in the air! but on Friday October 13th she got out her iPad and told that she was done. We sat and talked for about an hour, I told her that we would miss her terribly but completely understood. I told her she was braver than I would have been. She held my hand through out. It was her granddaughters 4th birthday on the 15th and I told her she had to hang around for that and for Christmas, she agreed. 20 minutes later she typed ‘there will always be something to hang around for’.

    We made the decision to have my niece visit with her on her birthday and again on the Monday. Tuesday evening mum messaged my brother to ask him to help her into her bed, she hadn’t slept in her bed for 4 months, she couldn’t get comfortable because of her saliva. My brother called me, I drove down as soon as he called, I arrived at 11pm (A3 closed due to over night road works) she feel asleep shortly after I arrived. We sat by her bed and at 3am she stopped breathing.

    I have googled since and I know that deciding you have had enough and pasting away is a thing, I just cannot get my head around it!

    Sorry it’s so long and disjointed.


    So sorry to hear that you lost your beloved mum, Ali.

    I know your sense of loss must be enormous and that the lockdown restrictions robbed you both of precious visits, close contact and opportunities but I admire your mum's strength and resolve so much - she did it her way.

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


      Hi Ali, Like Ellie said your mom did it her way.She must have been comforted by your support and covid changed visiting opportunities for your family.It’s still raw for you and the grieving process is hard and ongoing.
      Losing our moms is one of the hardest things for many of us and understandably you look back over the last stages before your mom passed away.It sounds like she was very loved.
      I can only imagine your anguish right now.
      Thinking of you Ali
      Best wishes


        I’m really sorry for your mum passing Ali. Love and hugs, 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.


          I’m just so sorry to hear about your Mum. Please take care and know you did your very best.


            Ali, please accept my most sincere condolences. Your mom sounds a very courageous and determined lady who was clearly loved by you all. In these darkest of dark times please take some comfort and strength from the fact that your mom did it her way. Like others have said you and your family could have done no more than make her passing as comfortable as you did.

            Take care


              Please don’t get me wrong, I am so grateful that she got to do it her way, when she was ready.

              It’s the fact that you can decide you are ready to go. I didn’t think this was possible. I know she said she was ready but she was still taking all her meds and feed through her tube, although not a full feed, around 2/3. It just weirds me out! It’s mainly what I think about when I do think of her.

              MND is an awful disease. It’s cruel. I guess they are all cruel in they’re own ways. It just seems so unfair to put good people through something so awful.

              Thank you for all you kind comments. I hope your journeys are easy to bare.


                hi Ali

                you made me think of my nan. she didnt have mnd but she was 84. for a long time she didnt want to die. she had health problems and possible dementia and she wouldnt go to bed. she would sleep sitting in her chair because she felt she wouldnt die there. then she decided she had had enough. she returned to her bed and died not long after. perhaps we can decide or perhaps we just know that our body and our mind has had enough and we can stop fighting. i thought it was just in the cinema or theatre that this happened but now you've mentioned it then it could be true. my mother died at the age of 84, which was strange because it was the same age as her mother, my nan, and even more strange she died on my nans birthday.

                at least she had her family with her and had time to get you near before she decided to go.

                lots of love
                when i can think of something profound i will update this.


                  Hello Ali.
                  Firstly, my condolences. I found your post very moving and identified with so much. I have bulbar MND and have similar issues to your mum, with the frustration of not being able to speak, and struggling to sleep due to saliva, sensation of choking etc. I too have had times when I’ve felt I wanted to switch this cruel disease off. So far it hasn’t taken over, but I truly understand it.
                  Just try to think that your mum tried to keep control of the biggest thing, her life, and has gone peacefully and in her own way. Let that be a comfort to you and your family.
                  Stay strong.
                  Love, Lizzie x


                    Hi Ali,

                    I am so sorry to hear of the loss of your beloved Mum. You sound like such a wonderful, caring daughter.

                    Although it must be hard for you to bear it sounds like your mum was in control and able to maintain her dignity. I hope your close family are able to support each other and that ,in time, your happier memories will bring you comfort.

                    Love Debbie x


                      My mum had altzimers and I will never forget when I got the call and drove for hours to find her lying in a bed looking like she had already died. I held her hand and told her how much I loved her and that it was okay to go. Six hours later she died. Maybe we do get to decide when it's our time? You have my thoughts at this dreadful time. Matthew x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx