“Nick is very angry”, says the Senegalese
care worker.
Oh
no! What’s the matter now? I’m immediately worried. It’s not like Nick to be
angry – actually, it’s about the one characteristic of Huntington’s Disease
that he doesn’t have.
Our
mum had legendary rages and spat out fury like a tiny wild cat; it’s a
well-known symptom of the illness and something most families affected by HD
will know only too well. But Nick is placid and even tempered, and the nearest
I ever see him to cross is when he gets agitated by something like his TV not
working or thinking he has run out of wine.
“See!” she points at him as he lunges at
the spoon of yoghurt being held towards him by her colleague, “he is moving very angry.”
I
realise she means that his physical spasms are getting worse. And they are.
Despite relative order and calm over the last few days, despite a recent
medication review, despite everything that anyone can do to keep things on an
even keel, the chorea is noticeably worse and also, in the warmer weather he
seems to be over-heating like crazy.
But
he is happy – and so, I realise am I. Despite all the bloody slings and arrows
and all that jazz, the paperwork and the latest housing benefit fuck up and the
broken hoover and the nutty neighbour and every little cross we have to bear, I
just feel extremely grateful that here we damn well are.
A
friend who knows about these things was telling me about Twitter’s Angry
Algorithm. Apparently angry tweets (and I’m sure this equally applies to posts
on Facebook) get much more traction than happy, jolly ones and photos of
otters.
Apparently
it’s an algorithm thing. The web has a dark heart and feeds on Schadenfreude
(and its ugly sisters Angst and Weltschmerz)
Well,
so be it. I've certainly added to the angry thing more than somewhat myself, but since hearing about that I've decided I'm not playing.
Today
I have to take Nick to the bank in town to get bank statements detailing all
his income and expenditure for the last six months, so that I can later take
the statements to the council as proof that his circumstances haven’t changed;
they have stopped his housing benefit and council tax exemption because they
have somehow got the impression that he is getting money that he hasn’t told
them about. Yeah, right. And - if only! His finances are down to the knuckle as it is. If anything extra ever does come his way, that would be from me, bailing him out most weeks
because we can’t really make ends meet.
This
is not just us, by the way, it’s a terrifying percentage of carers nationwide
who prop up their loved ones and the whole decaying social care system, as
revealed in the State of Caring report this week.
And,
No, I still haven’t organised getting Power of Attorney at the bank yet which
would make life so much easier. It’s on the list.
But.
Living well is the best revenge as I’ve said before, and despite all of the
above, the only thing we can do is to make the best of it. The trip to the bank
and trying to find a disabled parking space – always fun! – will be a micro
adventure.
So
stuff you, angry algorithm, go and find a president to play with. I am choosing
optimism and positivity today.
