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My perception of my support assessment…

Posted Apr 26 2013 11:08am

With the best will in the world, I cannot see how my embryonic support package is going to work out.

I understand that they need to see exactly what I can do for myself but, right now, that’s as close to bugger all as it’s possible to get.

And let’s not lose sight of the fact that if my consultant is right, I’m still dying – and at the moment I’m fighting a drugged-up holding action, with no suggestion of any real recovery on the horizon. I might be home, but physically and emotionally, I’m still in crisis.

Last night I was observed making cold dry stuff into hot and wet stuff (rehydrating Smash!), and converting a can of cold glop into hot glop (All Day Breakfast – and having to point out that while the sauce had come to the boil, a little longer was needed for the meats to heat through safely!). This is not cooking – this is survival at its most basic eat or die threshold. I’ve been here – I almost died.

I have a lot of canned stuff right now, bought in desperation when I was too far gone to eat but still aware enough to know I had to keep trying, even though I failed utterly. I do NOT want this perceived as my norm. It is not, it never was or will be.

On the rare occasions when I am able to cook, I defer to no-one when it comes to ability – I’m a bloody good cook when I’m able, and I don’t do false modesty (some would say that I don’t do modesty at all – I can live with that!**). However, due to the constraints imposed by ill health, I tend to batch cook for the freezer, rather than make single meals, as it makes far better use of my time and physical resources, but because I’ve been away for so long, all my stock has to be thrown out.

**I mean that – a cook who doubts his/her own abilities will flunk out.

There’s a misguided belief that frozen food keeps indefinitely – no, it does not. Industrially blast-frozen food will keep until its BBE date. Home frozen food is good for about 6 weeks before it starts to deteriorate. Taste and texture go first, before it gets dangerous, so no excuse for poisoning yourself unless you’re terminally dumb – look, just date stuff, OK?

So what my support observers are seeing is at odds with what they need to see – guys, watching me default to my emergency survival position once or twice a day won’t tell you anything useful other than that I have one – simply surviving isn’t living normally – I have to get beyond that.

What I don’t want, at the end of this process, is an anodyne report that says something like “Mr. Graves has little or no difficulty preparing basic food, and thus will not starve.”

What I need to be doing is coming to terms with looking after myself the best I can, which for a variety of reasons might be a slow process. Putting rocks in the road, in the form of assessors/observers popping in twice a day, at times when I am always at my lowest ebb, is seriously unhelpful to me. Yes – I know I agreed to it – I’d have agreed to amputation if it got me out of hospital! Something else too – I agreed to an 09.30 visit. In hospital, that’s damn near the middle of the day, which starts about 05.30. At home, 09.30 happens to other people, not to me.

I do realise that people can’t always fit in with my timetable – I eat, in the evening, between 19.00 and 20.00, for example, and have done for many years – and being forced to cook and  eat at 17.00 for the purposes of this assessment is bad news  because I will either rush it to get it out of the way, or cock it up through not paying attention as I’m too tired at this time of day to focus.

I really don’t know what the answer is, but I have a very strong feeling that it would be best for all concerned if I simply pulled out before I get in too deep.

The thing is, this situation in which I find myself is totally alien to me, and I’d really appreciate any feedback from those who have been though a similar assessment and survived!

And am I, for example, over-reacting in finding the process intrusive? I mean, I really don’t want anyone descending on me at 09.30 to watch me fail to make breakfast – at that hour I’m only minimally functional even when well, and I’m a long way from that right now.

And that, I think, has to be the bottom line – I am simply too ill to make this work.

What I need is a period of readjustment – in a nutshell, I want my privacy back. After 6 weeks living as an extra in a crowd scene I really don’t need more strangers trekking through my life – then I might be up for this assessment with rather more equanimity than I can muster at present. Just sayin’


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