annanotbob2's Diaryland Diary ----------------------------------------------------------------------------------------- World MS Day Yesterday was World MS day, which is bollocks because every day is something or other and they all get lost and ignored. Coincidentally it was the day the local MS nurse had agreed to come and meet ED and then to discuss with me and care home staff how ED's end of life might play out. Hashtag good times. Not. The staff were humouring me as they think I am a drama queen (they may not express it like that, even behind my back, but that's the gist of it), but in the end it was good. ED is sleepy a lot of the time - most of the time? - and her eyes drift shut even when she's up in her chair. When I see the photos of how she was when she moved down here three years ago, I can see a massive loss of engagement with the world. But I don't know how it goes - this kind of MS (Relapse/Remit which can and did for ED slide over time into Secondary Progressive) is meant to be something you die with rather than of, ie not life-shortening, but it's impossible to imagine she's going to live long. Because she won't. Despite the staff being optimistic. Anyway the MS nurse said that the last thing to be 'taken' by MS is 'arousal' by which they mean interest in life and it's clear that ED is already losing arousal but still has some. She's sometimes awake for hours during the night as she's very partial to one of the night staff, who is quite happy to base herself in ED's room for the night and chat while she fills in the paperwork. The nurse said that the end usually comes via an 'event' - an infection in the chest or urinary tract or a pressure sore that won't heal and that these will keep on coming and be less responsive to treatment. She said I have to take some decisions about this, about antibiotics and hospital and how far to keep treating ED. My thoughts are that we keep going with antibiotics but no more hospital (unless it's something simple like replacing the feeding tube). There comes a time when antibiotics stop working anyway - she's already had them almost constantly this year for chest infections but is clear at the moment. We always have the option of calling on the hospice for more morphine - ED is still registered with them and they can deliver it if that becomes necessary. If she loses 'arousal' altogether, to the point where she's no longer responsive to her name or to anything - like in a coma but sleeping - then I think we have to let her go and not use antibiotics, but just keep her comfortable.. We have no idea of what kind of timescale we're talking - the nurse said one of her patients developed a severe infection and died in hospital while she was on a week's holiday, which no one was prepared for and which is why she wanted us to think about hospital and the reality of what is treatable and what kind of death you would choose. Hospitals these days are understaffed, noisy scary places, where everyone is desperately trying to do their best but it's still awful. Meh. I just want her back. Unlucky. But tomorrow I shall take her to the woods, whether she likes it or not. 12:11 p.m. - 31.05.19 ----------------------------------------------------------------------------------------- |
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