I have no illusion about being in control. You know those annoying gerunds that you see on the side of vans – Veolia, local authorities and the like: “Working in Partnership” “Bringing service with a smile” and all that guff.
Sometimes I think my strapline could be “Running two households, badly.”
Being a carer depends on quite a degree of control, though. It’s the opposite of care-less. So much of the time the other person’s needs come first so you’ve got to have the self-control to deal with that. If they are complex needs then you have to be super in control, a puppet master juggling many different strings just to keep the show going, never mind any fancy tricks.
When you’re looking after someone’s life – their health and dental appointments, their care provision, their finances, their shopping, their domestic maintenance and their social requirements, their dirty fingernails and their hearing aid batteries - all those myriad tiny but necessary things - then you need at least the illusion of control. You have to try to keep a tight grip so that things get done.
You’re not just a puppeteer, you're a circus acrobat on a tightrope, defying gravity to stand on one leg and spin plates from a pole balanced on your nose, and what could possibly go wrong?
It looks so precarious, but without missing a beat you catch another plate and keep on spinning.
Such skills! The audience applaud (although most of them are looking the other way because there is no spotlight on this tightrope and there are many entertaining things happening at their eye level.)
The ones who do see it say "I don't know how she does it," and then go off for an ice cream.
There is little glamour in this circus act, and it can feel like a full time job, indeed can actually be one – just not a paid role in the traditional sense.
However skilled you are, that level of co-ordination has a limited life span. You can’t let yourself slip up, and if you do, it just means extra work to repair the damage. You’re bound to wobble, drop a plate or two, you’re only human; but dropped plates cost time and energy to replace.
With every fall from grace this makes me more determined to keep better control, and with each new grit of the teeth I get more and more tense.
When I get tense I get cross and narky and can’t see any source of daylight and no end to the troubles ahead. It’s really rubbish for everyone, especially for my poor long suffering family and not much fun for Nick.
My counsellor tells me that control can only go so far, is only ever temporary and I must learn to let go. But how?
I think I used to be a fun person, light hearted and up for spontaneous jollies. Where is the room for that now though? How do I get everything done that needs to be done and still have space in my brain for carefree amusement? Not without careful planning, anyway.
I know how pathetic that sounds, but the other night I went out to see a film, knowing that Nick was safe and the carers would be coming in soon to organise his dinner – but somehow they made a mistake with another cancellation and didn’t come. So he had no dinner and no medications and no-one to help him get undressed and into bed. I didn’t discover this til the next day when I found the food I’d labelled and left out for him untouched on the counter, the blister pack of tablets intact, and Nick perfectly chipper but wearing the same shirt he’d had on the day before and had probably gone to bed in.
Meanwhile the Red Cross have brought a wheeled bathroom chair that won’t actually fit in the flat. We weren't expecting it. Presumably Nick will use it to sit under the shower when the wet room is finally installed, only we haven’t got a date for that or any idea whether it will be weeks or months.
I don’t know what to do with this chair or why they have brought it now without any warning, or who to ask for advice. At the moment the only place we can put it is under the communal stairs outside and hope that no-one makes off with it.
While I'm wrestling with this, Nick tells me that he has had an urgent text from his bank asking him to contact them immediately about his account which is in arrears. I did his online banking a couple of days ago and paid all the bills and there was money left in his account so that's worrying.
Can I delegate the responsibility of dealing with any of this? I don't see how. Nothing in my brother's life seems to be straightforward and even trying to explain the various complexities makes my head start spinning like those circus plates.
So it is not easy to think about letting go. Allowing a few plates to drop? Perhaps. Standing back for just a day? I'm up for it, but the endless to do list will still be there waiting.
I want to know how other carers manage. Or are they just like me, madly juggling just to keep the whole shebang from cascading into total chaos?
There are many things to be thankful for and oh so many things to laugh about if you have a black sense of humour.
But something’s got to give.