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    Help with the end

    Hello. I am quite new and have been lurking in the background reading posts.

    My step dad was diagnosed in March, he had only been exhibiting leg weakness symptoms since December. Progression has been really fast and we are now at end of life. He is in a medical bed at home, unable to move, he has stopped eating, can't speak and sleeps most of the time. We are lucky that we have been able to control pain.

    Can anyone explain what will happen? If he isn't eating then we presume the end is imminent. We have a palliative care nurse but we just aren't sure how to know when he is going to pass?

    We are on 24 watch with someone by his side at all times. xx

    #2
    When my wife passed she followed the same path as your stepdad. The hospice nurses suggested we gather the kids together on the Sunday. It was the early hours of the following Friday morning that she very peacefully just stopped breathing

    During that final week the nurse came in everyday to refresh the syringe driver with the cocktail of drugs used to keep her comfortable. On the Thursday night as I lay down next to her I quietly told her that our three grown up children had all gone to bed and that if she was ready it was fine to let go.

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      #3
      Bowler thank for sharing your private and emotional memory. I often wonder what happens re if I choose to be at home.

      Team stepdad I don't think you can be told when it will be. but hopefully the palliative nurse or doctor could speak with you and explain a little more. I know families want to be there. When a good friend of mine was terminal I suggested if people wanted to say their goodbye then to do it. I wish you all the love over the coming days x
      Diagnosed May 2021 bulbar onset als.

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        #4
        We were warned that my dad could die and we should all say our good byes. I stayed with my aunt through the night and early morning and he died not long after we left. I've heard others say the same. I suppose we go when we are ready to leave.
        when i can think of something profound i will update this.

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          #5
          Team stepdad

          Hi

          Keeping them comfortable, music they like and just being there.

          Holding hands and just talking and possibley reminise.

          Usually the breathing slows and changes, the person sleeps more and more.

          It is hard to tell a time line. Chat to the palliative team or GP if you have any concerns.


          Hugs

          Donna

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

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            #6
            Team stepdad A warm welcome to the forum, sorry to meet you under such dire circumstances.

            As others have said, the palliative nurses need to have a strong line of honest communication with the family at this time - there are telltale signs that the end is near, which the palliative team are tuned into.

            A truly generous parting gift for anyone at the end of life stage is for their loved ones to tell them they don't have to fight any more, that they can let go...

            Sending you love and strength at this difficult time.

            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.

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              #7
              Team stepdad thinking of you and your family xx

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                #8
                Team stepdad - thinking of you all and hoping you find some comfort xx
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                  #9
                  Sending you, and your step-dad love xx

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                    #10
                    Thankyou everyone. He is still holding on. He seems to become worse then pick up. All family have been and said goodbye. I had a moment with him last night where we held hands and I told him we all loved him, he mouthed love you back then fell asleep (he is mostly asleep now) his breathing was intermittent and I thought it was close. Today he has had a few mouth fulls of ice cream (hadn't eaten for a week before this) and communicated he wanted a cup of tea! The emotions are so up and down.

                    Love to you all on this forum xx

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                      #11
                      P.s the palliative care nurses and carers who come in both have said "how is he still alive" he's one tough cookie x

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                        #12
                        Team stepdad and sending love to you and all the family xx
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                          #13
                          Team stepdad - so glad he is comfortable and you have been able to say goodbyes. I'm a firm believer in the power of ice-cream xx
                          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                            #14
                            My sympathy regarding your situation. Can I ask how long he has displayed symptoms of his condition as this help me understand my sisters prognosis. I hope his final time with you is filled with love and compassion. Bless. Mike

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                              #15
                              Originally posted by Mike View Post
                              ... Can I ask how long he has displayed symptoms of his condition as this help me understand my sisters prognosis.
                              With respect Mike, the end of life stage is probably not the best time to asked a loved one about a person's progression history...

                              I will say however, that there is no 'typical' path of progression: there are as many progression pathways as there are people with an MND - quite literally, everyone is different, not helpful, I know, but it's true. xx
                              ​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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