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As I sit and wait

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    As I sit and wait

    I haven’t posted anything on the forum for a very long time but have been reading everyone’s messages over the last 6 months.

    Neil deteriorated quite quickly with a chest infection on Tuesday. Very distressing for him and also to see him struggling to breathe and the effort it was taking.

    He was admitted to our local hospice to be given antibiotics and syringe driver with medication to keep him comfortable. Unfortunately, he took another turn for the worse yesterday and we decided to stop antibiotics and nutrition. He is well sedated and comfortable which is the main thing.

    He was diagnosed with bulbar onset in March 2020 and last Christmas he was fully mobile, driving, although struggling to swallow and speech had gone.
    Within a year, MND has ravished him and he has been bed bound with no function, speech and swallow for 6 months. To top it off, they diagnosed cognitive and behavioural problems.
    We’ve had a lot of laughs and tears along the way and I’m hoping his journey will end very soon.

    #2
    I'm so sorry Neil has entered this stage Lynda but I'm happy that he is getting good care in the hospice.

    As a nurse, it must be a double edged sword watching, waiting, and knowing what signs to look for in a person, but that person is your beloved partner.

    Sending you and the kids hugs at this very difficult time.

    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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      #3
      Thank you so much Ellie. Take care and have a lovely Christmas. Xx

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        #4
        Hi Lynda, so emotionally draining for you watching for Neils end of life.Glad he is comfortable and hope you are feeling the hospice is the right place.
        Cant imagine how emotional you must feel.
        Really hope Neil’s journey ends peacefully.
        Best wishes
        Mary x

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          #5
          My heart goes out to you.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Lynda Sorry about Neil’s rapid decline but good that he’s being looked after in the hospice xx
            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
              Lynda I'm so sorry you are both having to go through this. My very best wishes to you and your family x
              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                #8
                Dear Lynda

                I'm so sorry to read your news.

                Your Neil was in the bed opposite my husband in hospital last year; my husband had just been diagnosed and Neil was in getting his peg tube. We both remember how Neil gave us a huge grin and a double thumbs-up as he left the ward to go home. At the time we were so shell-shocked with the diagnosis but afterwards when we remembered it, it encouraged us that life would be manageable and we really appreciated the up-beat gesture.

                My darling husband died last night quite unexpectedly in A&E. I was able to be with him as he passed and I held him and talked in his ear. He died peacefully.

                I hope that this last stage for Neil is comfortable and peaceful and you are surrounded with love and support.

                Best wishes to you.

                x



                Husband died 14 months after MND diagnosis.

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                  #9
                  Betty I am so sure he left with love in his heart. Loosing the ones we love cuts deep. Time heals. 🙏xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #10
                    Betty May Oh, I'm so sorry for your loss Betty, heartfelt condolences to you.

                    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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                      #11
                      Betty May I’m sorry for your loss. Words can’t be enough I know but you’ll be in my thoughts. Love Lynne xx
                      Last edited by Lynne K; 25 December 2021, 18:54.
                      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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                        #12
                        Lynda Dear Lynda This illness is so cruel and a peaceful end is the best we can hope for. I send you my love and wish you all the strength you need.

                        Richard
                        Richard

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                          #13
                          Betty May Words are often so meaningless at this time. My thoughts and prayers are with you and a big hug.

                          Richard
                          Richard

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                            #14
                            Aw Betty Mae, I am so dreadfully sorry to hear about Ian. What a shock for you and I hope you are ok and can draw upon your faith for support. They have both been through the mill. You have my number so please call in the coming weeks/months, if you would like a chat/coffee/wine. Unfortunately, I am still sitting and waiting for Neil to succumb to the worst disease known to man.

                            Thank you all for your wishes and support and I send a big hug to you all. Xx

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                              #15
                              I'm so sorry Linda to hear about Neil.

                              Betty just so sorry about your husband's passing.
                              ​​​​​​
                              Julie xx

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