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The End- Thank you all

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    The End- Thank you all

    Hi All,

    Looks like my Gran is reaching the end of this awful disease. Her palliative team managed to find her a place at our local hospice so they moved her from the nursing home on Friday morning.
    Saturday morning, I received a phone call from the hospice to say my Gran's breathing had suddenly gotten very bad and that, when she had tried to take a sip of apple juice, she had choked on it to the point her face started to turn blue.

    Since then, they have put Gran on a syringe driver that is continuously pumping out morphine- she is drifting in and out of consciousness because of this. Her legs feel cold to the touch and her newly inserted catheter is not even getting a quarter of the way full.

    I want to thank all of you for answering so many questions I've asked over the last year and I wish you all the absolute best <3
    "This, too, shall pass"

    I am so sorry to hear that your beloved Gran is in her final stage, Chrissie, but I am glad she's in a hospice and being cared for appropriately.

    You've been a wonderful grandaughter and I hope you have lovely memories of her.

    Wishing you much strength over the coming days, weeks and months.

    Big, big hug 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.


      I was only thinking of you the other day and wondering how you and your gran were doing. Sorry to hear that things have deteriorated to this point. Thinking of you and hoping you have people around you to look after you with as much love (and patience!) as you show your gran. Big hugs xxx


        Dear Chrissie,

        Sorry to hear that your Gran's health has become much worse. It must be very upsetting for you but I hope it is of some comfort that the hospice is making sure that your Gran is free of pain and she is as comfortable as possible.

        You are a wonderful Granddaughter and your Gran is blessed to have your love and the close bond you share.

        Thank you for keeping in touch with us and I hope you have lots of support from family and friends at this difficult time.

        Please feel welcome to stay in touch with us if you would like to.

        Love Kayleigh x
        Last edited by Kayleigh; 21 January 2020, 01:22.


          Thank you all for your lovely messages

          Inevitably, we have some family members who haven't been around throughout the whole illness and now suddenly want to know everything and be involved (finding it hard to bite my tongue, but I am doing it for Gran's sake).

          "This, too, shall pass"


            Good morning Chrissie

            Thank you for updating us and I'm sorry to hear that your grandmother is approaching the end.

            I can only salute your fortitude and the depth of your love and care and hope that at least some of your relatives acknowledge that.

            Only you can know if prompting them to show that will have a positive or negative impact on those relationships


            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

            "Things turn out the best for people who make the best of the way things turn out"


              Hi there,

              It's a real shame that people start to care when it's too late. You bite their head off, they could have made a difference to your and your grans life but I guess she didn't make it easy for anyone.

              Pleased to hear she is comfortable.

              Hugs Terry
              Last edited by Terry; 22 January 2020, 14:47.
              TB once said that "The forum is still the best source for friendship and information."

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


                My thoughts are with you Chrissy at this sad time. As others have said you are a wonderful granddaughter that has given your all to your gran. I hope that the hospice is offering support to you. 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.


                  The hospice staff are hit and miss at the moment. I think they're wary of telling me things because I probably look too young to be considered the 'carer'/'main family member'. I'm sure they'll realise soon enough when all the hype has died down and I'm suddenly the only person visiting every day (started happening already, surprise, surprise).

                  She had a good day yesterday- seemed almost back to her 'normal' self (albeit that also meant she was back to being her usually-uncomfortable self, too). She had a little bit of ice cream when I was there- first thing she's eaten since Thursday, so it's all looking quite stable for now.

                  The drive to the new location is hitting me hard, though- a 5 min drive suddenly turned into a 30-40 min one. Very tired!
                  "This, too, shall pass"


                    Chrissie, who is your Gran's next of kin?

                    Hope you manage to get some sleep later.

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


                      Sending love and hugs x


                        Hi Guys,

                        Ellie- it's my uncle, but he's about as useful as a paper brolly.

                        We've had a complete turn-around since I posted this thread initially. The hospice weaned Gran off the heavy dose of morphine so she's now on 5mg. Her breathing is more 'normal' and she was sent back to the nursing home yesterday afternoon. (Annoying for me because all of her stuff that I'd moved only a week and a half before, I had to move back after work! But that's by the by).

                        She's permanently got the syringe driver in place now, with the morphine and something that dries up the secretions. She's also kept the catheter, which is a massive help due to less need to be hoisted and dangerously balanced on the commode.

                        Unfortunately, she is still not eating anything, though she is trying to drink small amounts of liquid (her swallow is all but gone so she literally tips the sippy cup into her mouth and lets the liquid dribble down the back of her throat- I am expecting to see lots of aspiration issues in the near future).

                        So, though I was initially told that 'the event' was imminent, it seems we have a few more weeks, as it currently stands.

                        As you can all appreciate, I'm half happy and half sad about this- she's barely got use of one of her arms left and I was holding on to the fact that at least she could communicate via writing 'until the end'. Not sure what's going to be left now.

                        Thank you all for your always uplifting support xx
                        "This, too, shall pass"


                          Originally posted by Broostine93 View Post
                          As you can all appreciate, I'm half happy and half sad about this
                          I totally get what you mean, Chrissie - an emotional rollercoaster for sure

                          The main thing is that your Gran is kept pain free and comfortable, for which I hope the nursing home staff have clear instructions… (i.e. they know if and when to change the morphine and glycopyrronium doses??) I can only hope your Uncle is on the same page as you are regarding Gran’s treatment!!

                          Make sure you look after yourself during the exhausting weeks ahead.

                          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 Chrissie, Thank you for keeping us updated.

                            Its sounds like your Gran is comfortable and pain free. You are such a loving and devoted granddaughter and you Gran is lucky to have you .

                            Take care of yourself and wishing you strength in the weeks ahead,
                            Love Debbie x


                              Hi Guys,

                              The staff seemed to know what they were doing last night- they came in to check her driver and change her pad just as I was about to leave.

                              Unfortunately, I am still the 'get Gran as comfortable as possible, even though that's impossible' person (to be honest, I don't want to keep having to do this every day because 1) it's dangerous for her, especially with the catheter in now- I literally have to pull her by the bed sheet or put my hands underneath her to shift her sideways and 2) it's dangerous for me- felt like I was about to snap my back last night). Of course, I'd love for her to be comfortable all the time, but it's just not possible anymore, sadly.

                              My uncle is mostly just going along with whatever I say because whatever I say comes directly from Gran's choices. I do feel quite bad for him at the moment, though- he had a motorbike accident a couple of nights ago and had to go to A&E with concussion (Haven't said anything to Gran because he asked me not to and because she would panic).

                              Love to you all xx
                              "This, too, shall pass"