annanotbob2's Diaryland Diary



She died on Sunday evening, my darling daughter. I'm going to write about it because that's what I do and here is where I do it. You may not want to read on.

It all suddenly escalated out of nowhere. I'd taken Son to catch his train on Saturday evening and been for a walk on the beach as the sun went down:


I could feel it nourishing me, feeding my soul for what was coming, though I didn't know what or when.

And my darling girl had a big seizure later that on evening, with blood coming out of her mouth, which enabled them to stop feeding her through the stomach tube - as care workers they have to follow the instructions laid down by professionals and don't have the right to change those instructions - to stop feeding her could have led to charges of neglect and prosecution and being barred for life - but blood through the mouth is a good, allowable clear reason. They called the paramedics, to come and make her comfortable - that was the agreement reached - no more hospital, no more treatment aimed at sustaining life, just making her last time as easy as possible. They also called me and I called YD, and we sat with her all night and all the next day.

She was in a lot of pain so had a lot of morphine. After a while intravenous was needed, which had to be given by a nurse, so district nurses came and went. By morning it was clear she was "actively dying" - long term readers may remember we got chucked out of the hospice in 2017 when she was no longer "actively dying" - but now she was. I asked the nurse who came at about 7 Sunday morning if she thought I should call people and she nodded sadly, so I did.

She went from being not ill enough to go to the hospice to being too ill to move within the space of a couple of hours early on Sunday morning, so she stayed in her bed in the care home. All my fears about that were unfounded. The manager admitted to me that she was terrified - she's only been in post for a few months and was scared she'd get things wrong, that she'd let ED or us or her staff down. As soon as she said it we spontaneously hugged and cried and I told her she'd be fine, we'd manage it together and we did. She was meant to be on annual leave, but came in and stayed as did several other workers, including the ex-manager who doesn't even work there any more. We were surrounded by loving kindness.

Over the course of the day all the family came - Son had gone back to London, but he slept a few hours and caught the first train back down. Sis came and stayed for ages - she hadn't gone to see brother in his last days as she was too scared and has regretted it ever since so she steeled herself and yes, it was awful, and no, dying's not a spectator sport, but when it's someone you love your place is there. Sister in law came with the nephews, the auntie on the other side, Bloke and of course poor Grandson, whose mother she is. Was.

The last few hours were peaceful. She was no longer in pain, her eyes were closed, her face was relaxed, her breathing kept slowing right down then speeding back up. The colour drained from her face. Everyone went home except me, YD and Son. I read her some of the poems I'd read so many times before. Sea Fever. The Listeners. The Journey of the Magi. I don't know if she could hear them. The nurse who came at 5 in the afternoon said it could be over in half an hour or a few days. GS went home for a break and after the next period of slow breathing as soon as it started to speed back up again, I went to the small lounge for a nap, having been up all night. YD woke me up to say her breathing had slowed right down so I went straight back to her room and within a few minutes she was gone.

Aw man. I had wanted it to be over but I hadn't wanted her to go. But now I find all the memories of her life before the MS took hold are flooding back - I hadn't allowed myself to dwell on them as it was too painful and she was still here - my friends' son died instantly, shockingly, in a car crash so I knew it was a blessing she was still here and tried to stay in the present, not dwell on the past nor project into the future. But now the MS years are dissolving and my daughter as she was is coming back into focus.


As I said somewhere else today, she was silent for the last four years but in her day she was a legendary talker. Witness bottom left above - talking to strangers on the London Underground, who always talked back.

She was my first born, the first person I ever truly loved and she was a great blessing to us all.



2:10 a.m. - 03.09.19


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