The Peace Hospice crew are trying to get me permanent funding in this Hospice, or else it may be at another nursing home place (which I don't want). The bottom line is that the lovely crew here are in agreement that my home is not an option, as I need too much care and I think they would love me to be able to see my days out here. But there are people who clutch chequebooks who need convincing, who don't know me and I, to them, am just a name on a piece of paper.
Speaking of 'home', I have gone back to the flat to pick up a few things this afternoon and try to sort myself to attempt to do some work done. You will not believe how much energy it takes to get up and about. I hate being out, its too much - its depressing, painful and, well, ... can't explain but just a car journey or a flight of stairs fucks me, physically and emotionally, as you feel how detatched, different and weak you really are.
And in regard to 'work', well my remit is to somehow dump 14 years worth of data that's in my brain out into a understandable-for-someone-else format. My best friend has been up to support me today, but it still ended with very little actually done and many real tears of frustration and sadness ... thankfully my best-friend does good best-friend hugs.
So, I'm pleased to be back at my Hospice (like I never want to leave this room again!), but I worried. I'm worried I won't get a permanent placement here - its really a hospice for the short-term terminal and I've got a few months, I think. Everyone here seems to be fighting for me, so let's hope. I'm due a bit of "luck" and having a room here until 'The Bitter End', is all I'm asking for.
The thought of life in an inferior nursing home, or having to install hospital beds and nurses into my flat just seems horrendous after spending time here. Like everything in my so-called-life in the last 12 months, we'll just have to wait and see ...
I haven't blogged much about my day-to-day routine and it's because there's too much detail to go into and I am just sick to death of talking or explaining about it. Just assume that everything is hard bloody work but everyone here is amazing and kind and all that can be done is being done ...
The only way I felt I got close to summing up my feelings, was by saying to someone that "it is now my full time job to wake up, minimise pain and get back to sleep". Its my job just to live. Anything on top is a bonus.
I'm frustrated. I'm tearful and I don't want to write this sodding blog but with hundreds of well-wishing friends, family and near-total-strangers emailing me, its a duty that I need to do.
Bad mood. Sorry. I'm "OK" just stressed about work and future of the Hospice. I'm sure you can understand. I
This blog in unlikely to be updated as much now, ironically, when there is the most to write about, but, well ... You've had nearly a years worth of free content out of me and ...
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