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    #16
    I am writing this with the greatest respect, empathy and sensitivity but as I am not a great wordsmith, I know it won't come across this way...

    Dear Chrissie, Douglas wouldn't be the first person to take a given prognosis at literal. Some would see it as a target to beat and others could see it as having permission to let go - it is very individual and depends very much on how much the MND has taken out of that individual.

    The vent nurse may be sought to adjust the NIV settings - if Douglas is more tired, breathing may be more laboured, which often means the IPAP is now uncomfortably high and breathing is an exhausting chore. Or maybe he wishes to stop using NIV.

    If Douglas is in this frame of mind, then a hospice is a better place for him, and also for you.

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

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      #17
      Ellie, I think you are a wonderful wordsmith.
      Oddly, Douglas has taken every prognosis literally, even though this was about the third one he has been given and he is still with us - but it goes very much against his character as it was.
      The doctor has now been and some of what is written in his notes regarding nutrition contradict what Douglas himself says. The medication appears to have been offered in tablet form with water instead of crushed in yogurt, but I had informed the pharmacy here how they should be administered on Friday morning.

      Happily he seems a little brighter now although still very tired. I think a hospice might be better for him but he really wants to end his days at home and I feel I should be able to make sure he gets that wish at least.

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        #18
        If the Ward Manager/Nurse in Charge can't immediately sort out how Doug's meds are administered, get on to Patient Advice and Liaison Service (PALS) in the hospital - if their contact phone isn't displayed on the ward, ask for it at the Nurses' Station.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

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          #19
          Thank you, Ellie��

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            #20
            Douglas' oxygen levels have dropped and they don't seem to know why. Doctor says it will be treated as an aspiration problem. They are trying to stabilise him now and are going to adminster anti-biotics, I believe.

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              #21
              Has he had a chest X-ray? Is he still not eating & having meds?

              If he's back in the Wythenshawe, at least they know NOT to give him oxygen, just to use his NIV (if that's what Doug wants)

              Best wishes.

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

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                #22
                Hi, Ellie
                Yes they will x ray him. Although he is on the medical ward the vent team are involved so he is in good hands really. Despite everything Doug has a strong constitution. He came back in September when they had more or less written him off - he wiĺl not go down without a fight. Hope this doesn't sound too unrealistic.

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                  #23
                  Oh good.

                  Yes Chrissie, he is one strong man!
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

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                    #24
                    Hello, sorry I went missing again but I ended up staying at the hospital with Doug.
                    He was discharged on Friday on an end of life plan, as it turned out he had a lung infection again.
                    He was put on subcutaneous hydration and had decided he would continue to risk feed for as long as he could. He has been very much weaker over the weekend but fully alert, even though he could not manage to eat much.
                    This morning his carers did not turn up (in fact, they still haven't) and Doug seemed to get rather agitated. At the moment, he is in bed with his NIV mask on - he is breathing but I cannot get him to wake up, there seems to be no response at all to my trying to rouse him.
                    No point phoning ambulance - his directive now says he is not to be readmitted to hospital for any reason and I don't think the paramedics could help. His doctor will call after his surgery but he didn't seem to think it is necessarily the end, he just wants to see Doug is comfortable.
                    Should I be giving up hope or not? I feel completely helpless...

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                      #25
                      What a terrible dilemma for you. I don't know what to suggest but hope you are ok and soon get help"

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                        #26
                        Doctor has been - said the main thing is to keep Doug comfortable and try and ensure he is not in pain. The district nurses will administer any drugs necessary to ensure any pain/discomfort is controlled

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                          #27
                          I’m so sorry Chrissie - you should not be left wondering like this. How frightening it must be for you not to be able to rouse Douglas.

                          Was Douglas sent home without palliative back-up? Your hospice probably offers a ‘Hospice at Home’ service if the district nurses aren’t used to dealing with complex cases, such as ALS/MND.

                          Originally posted by chrissie57 View Post
                          ... try and ensure he is not in pain.
                          There shouldn’t be any mention of try being pain-free, comfortable and not in anyway agitated should be a given… When are the district nurses due to visit? They may suggest using a syringe driver. It delivers meds just under the skin, which would keep Douglas very comfortable and in no pain.

                          I truly hope you have support, Chrissie - someone to give you a big hug and say “you’re the best Douglas could wish for”, someone to make you a cup of tea and a hot meal.

                          You’re in my thoughts.

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

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                            #28
                            So glad Monday is over.

                            Sorry, Ellie, should have made it clear that he is under the care of a palliative team. The Doctor concerned with that is visiting Doug tomorrow, as well as one of the District Nurse team. Some of the meds he might need were issued to him some time ago and they have sent him home with more and the equipment to administer them.

                            The problem was that Doug seemed to take a turn for the worse so quickly and it worried me a little that, since I couldn't call an ambulance, I wasn't wholly sure who was the best person to contact.

                            On top of this, out of the 4 visits he should have had from his carers, he had only one and that was at 1pm so he has gone from then without any personal care having been done. I rang at about 10pm to see what was happening and they assured me they were coming, when it got to midnight I realised they lied. I can't sleep now because of worrying about Doug (although he has rallied a little) and because I am so angry and upset wondering how the carers can be so callous.

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                              #29
                              How heartbreaking :,(

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                                #30
                                Oh that's some relief to know Doug is under palliative care, Chrissie.

                                Yes, absolutely callous and heartless of so called carers to leave you hanging at this critical stage - shame on them.

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

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