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The mothership

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    The mothership

    My sister and I used to message one another asking how is the mothership today?

    There were always funny exchanges of what tasks she'd sneak off to do, while we were trying to WFH. When she was quiet you knew she was up to something, whether it was sneaking off to the garden or dusting the stairlift. My mum wasn't a woman who sat idle.

    Slowly as the disease progressed she/we adapted to the limitations imposed. She persisted in helping with the cooking, despite the many occasions she'd drop a knife and instinctively go to grab it (thankfully no injuries). She'd do her own risk assessment, removing her fitflops when cleaning the stairlift as she'd tripped earlier in the week.

    But gradually overtime she had to allow my sister and I to take over the chores. Most importantly she had to accept that she needed us to care for her, which we did until the very end.

    I always imagined the end would be long and drawn out. I tried to prepare myself for such an eventuality. But actually it was quick and peaceful.

    I'll forever be grateful for the paramedics who stayed with us on a Sunday to get the support we needed as the hospice/district nurse/ out of hours GP kept giving them the runaround. Mum had always been 'stable' so the just in case box wasn't in place. They were able to administer morphine to help her relax and she slipped off a while after.

    I think I joined the forum a year ago but never introduced myself and panic posted the first day we started hoisting my mother at the end of September. I want to say thank you to each and every person who replied to my post and subsequent posts I made. Your willingness to take the time to respond is much appreciated.

    I'm actually sincerely grateful to everyone who posts and shares their experiences. It makes you feel less alone and it's an invaluable source of information.

    I'm not really sure how to end this post, other than to say say farewell mothership, we love you❤

    Carer to mother diagnosed May 2021 with bulbar onset MND. No longer speaks, RIG fed, NIV 24 h, left side completely weak/no function, right leg now weak, limited use of right hand.

    A beautiful post, thank you for sharing your thoughts at this most difficult time.

    Love and strength to the whole family.

    RIP mothership.


      My sincerest condolences 😔
      Foxes Never Quit 💙


        So sorry to hear this.


          What a lovely moving post. Sorry you've lost your mother. So glad reading the paramedics were so good for you all. Xx
          Diagnosed May 2021 bulbar onset als.


            Purpletunes I'm so sorry to read of the loss of your much loved mum; heartfelt condolences to you and your sister.

            Thank you for taking the time to type such an eloquent post.

            Bravo Paramedics, thank you.

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


              So very sorry to hear of your loss, although it sounds like your lovely mothership passed peacefully surrounded by love.

              I couldn't help smiling as not only did I relate so much to your mum sneakily doing things, but also that her effected limbs were similar to mine. I think I am a bit of mischief to my two girls.

              Sending hugs, thank you for sharing your story x
              Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

              Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


                So sorry for the loss of your much loved Mum. What a beautiful post in which your love for her shines through.

                I am glad the paramedics were able to assist and the end was peaceful.

                Sending love xx

                Diagnosed 3rd November 2021 Bulbar Onset


                  Beautiful words for your precious mum. So very sorry for your loss xx


                    Am really sorry to read your very sad news. Condolences to yourself and family. Thanks for writing such a loving post. Thinking of u. Xx
                    Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.


                      So sorry to hear of the loss of your beloved mum. Your love for your mothership shines through in your beautiful words.

                      Thank you for posting and well done to the paramedics.

                      Love Debbie x


                        I'm so sorry for your loss. Thank you for taking the time to write such a beautiful post.
                        Diagnosed November 21, ALS limb onset, started in right hand June 2020


                          Ah so sorry to hear about your Mum, your post is lovely. Thinking of you, your sister and any other family members. Xx


                            Purpletunes I'm so sorry for the loss of your lovely mum. You have looked after her amazingly, alongside your sister, and it must have given your mum such comfort.

                            I'm glad the paramedics were there and your mum was peaceful. Take care of yourselves xx


                              so sorry for your loss, my thoughts are with you all xx