Here's the thing. We're bereaved, my family, yet not bereaved as ED is still with us. But when I watch the video I made of her for the fundraising, a short two months ago, it's clear that she can no longer think or communicate to anywhere near the same degree - our chat in the video looks easy from here. And my smart, motor-mouth, multi-lingual, mathematical, politically aware (with a small p), gob-on-a-stick daughter is history. She's still funny, but it's as if she can't get enough air to be fully herself, and now she's gasping. [And I read that through and it sounds so cold and hard, yet I won't dress it up with words of sorrow]

I don't know how to do this alone without closing myself down to other people, people in my real life. I know they care about us at some level - the generosity of the donations to the fundraising, the people who walked in the rain prove that, but I need more. I need an advance on the support I'd get if she had actually pre-deceased me and I know it would be plentiful and freely offered, but I don't know how to ask for it now. I need phone calls, checking to see how I am (I am broken), and cups of tea being offered and stuff I can't manage being done for me. And hugs, real life hugs, and my grief being witnessed. We all need that, my family.

I tell you what else pisses me off:

1. People telling me I must be happy she's in a good place as if that happiness (which I do feel) is not co-existent with the searing pain of her needing to live in a care home, some because they are not having me going anywhere near that, others because they have so little empathy/imagination that they can't see it. Whichever it is, fuck off. Right now I don't like you or want to see you.

2. Our magnificent fundraising total of almost £9,000 did not include a single donation from anyone in ED's life up where she lives now. Not her in-laws, her neighbours, her ex-work-mates, her friends, not one. Yet they are the ones who present themselves as upright, law-abiding, decent citizens who kind of look down on my raggle-taggle family and friends, and they can FUCK OFF as well.

I like this article about how we stay the same as we get older. I particularly liked "I spent my late teens and 20s waiting for some miraculous switch to happen when I no longer felt like myself, which I knew was being a child, and became something much more sensible, which is called an adult. And here I am at 56, still waiting." Me too, me too.

Grateful for: A functioning comment box; a blog to off-load in; my friend Mteach, who took me out to lunch today and ranted about Ofsted the whole time so we didn't get on to ED at all, but I didn't mind, in fact I liked it; not being a teacher in the current system; finding a drop-in restorative yoga class I can walk to tomorrow

Sweet dreams xx