My perception of my support assessment…

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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5 thoughts on “My perception of my support assessment…

  1. Social works will arrive with fixed ideas, fixed timings and fixed smiles. They will probably have NO tattooed on their foreheads.You will be told that those receiving diabetic treatment must be seen to first and then day centre clients. You will have your breakfast at 10, lunch at 12, dinner at 6 and be in bed by 6.
    When I shattered my ankle and had to keep off weohjt bearing for 10 weeks. I was visited by a reablement OT who said I could manage all aspects of normal home life. I couldn’t even bloody walk! She also said when my leg healed I would be able to drive again. Now that would be a miracle if somewhat illegal! That was the limit.
    Be positive Ron and don’t let hem drag you down to thei level or they wil assess you as being perfectly fit and able.
    You and you alone know what you can and can’t do.
    I wish you luck – you’ll need it!!!
    Pat x

    • or they will assess you as being perfectly fit and able.

      Pretty sure that’s a given already. In the hospital I was taken to the test kitchen and, having almost gone over backwards while making coffee, was told I was just fine!

      The reablement OT was quite obliging and is setting me up with a commode for the bedroom (bathroom is just too far away), but Physio dorks have assessed me as fit and well based on a very short walk and me telling them not to be so bloody patronising! Ooh – mind the door, and this wall – you almost brushed against it you know – and look, here’s a corridor! And people!

      Pillocks!

      As for food, I know exactly what I need to do to turn my life around, regain just a little of the 20kgs which are still missing, and build up my strength again – and a large part of that involves being left alone to get on with it. Mainly because what I genuinely need – a wheelie-friendly flat – appears to be off the agenda.

      Ron

    • Nope, not so far anyway. And my attitude is hardening – I don’t want a care assessment, it’s too disruptive and simply isn’t going to yield the results I need, especially as it’s taking longer than it should for me to get back on an even keel back home (and yes, I can see what you can see in that statement!). And what I’m finding is that instead of getting back into a morning routine, which I badly need, I’m waiting for the bloody doorbell to ring!

      Mind you, I’ve been away for a long time in blogging terms, so there’s some rebuilding of my readership to do – I need to post more over the next few days to scream Hey!!! I’m back!

      What I think of as my hard-core followers – those who are always there for me come what may and are appreciated far more than they might realise – have stayed the course in the absence of posts, but it’s clear from my stats I’ve lost a lot of readers. It’s clear, too, based on the rise in hits since I came back, that I should be able to get them back.

      Ron.

  2. I only had a one off assessment with regard to equipment I might need to help me indoors etc so have no experience of what you are going through but just wanted to say you know what your needs are, you are aware of what you can/can’t do so tell them, don’t let them tell you. It does sound horribly intrusive Ron and I doubt you appreciate that so set your own boundaries and refuse to move them.

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