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    Syringe driver

    Hi everyone

    My wonderful Mam has gone onto a syringe driver on Thursday and we have been told it’s a matter of weeks not months. 11 months from diagnosis but as family, Mam, my brother Craig and myself are all together at her home for this. My god it’s tough though, lots of crying. The difference in Mam since the syringe driver is very apparent, she is a lot calmer but now very tired. If anyone has any advice on how to cope over the forthcoming weeks I would welcome it. We talk openly about the inevitable as a family, funeral planning etc.

    thanks and keep on fighting everyone

    Lesley

    #2
    Live as normally as possible and as if every day is the last. Works for me. Stay Strong
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Sorry to hear that Lesley.

      Touch is so calming for you both, so maybe give your Mam a gentle hand massage with nice cream or oil, chat to her and tell her how much you love her.

      Put on the radio or an audiobook to keep her company - even when she is drowsy, she can hear what's going on in the background.

      I'm glad she is comfortable and not agitated.

      Much strength to you and Craig.

      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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        #4
        Thanks Matthew & Ellie xx

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          #5
          You're more than welcome 😊x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Peace to you all, Lesley x
            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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              #7
              Hi Lesley. My wife has also just gone onto a driver. It has taken a couple of days to balance the drugs to the right level but I’m now seeing the same drowsy but comfortable outcome that you are. I am using sponge mouth swabs dipped in water to keep her mouth and lips moist. Also putting lip balm on at night.

              peace be with you all.

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                #8
                Bowler Sorry to hear that, Phil.

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

                Comment


                • Good strength to you all. You have all done the right thing by sticking by your loved ones. So many in care homes are now being blocked access. Don't forget you can still enjoy the little things in life like a lolly. God bless.

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