My heart
sank when the upstairs neighbour came round to complain about the noise. It’s
happening all over again, I thought.
I invited
him in to meet Nick. At least that way, he could see for himself that Nick is
not well, and Nick could understand the impact that his loud radio has on other
people. The neighbour turned out to have tinnitus like me and gets very
affected by external noise. He didn’t want to make a fuss, he said, but it
would really help if the volume wasn’t turned up so high that vibrations were
buzzing through the ceiling.
I stuck one
of my dayglo post-it notes to the wall reminding him to keep it down, and “I will” said Nick, which is his constant
saying now – totally meaningless, he says it about the wine (“Please pace yourself, bro”), the carers
(“Nick, you must tell them what you want”),
the radio, the reminders to check his phone for texts, you name it.
“I will,” he says, like some bridal
ceremony on a loop, but even if he thinks he will I know perfectly well that most
of the time he won’t. (“I forgot” is
the other most popular saying.)
So I have
been fretting a bit about the radio as well as all the other stuff I’m worrying
about, since both Nick’s physical condition and his mental capacity seem to be
deteriorating almost in front of my eyes. The carers are a still a huge worry;
some of them have been really keen, reading the daily notes and making sure
Nick has his non-slip mats and good grip cutlery to help him eat his
beautifully chopped up meals. They have made his bed every time and someone has
even been making a stab at the recycling!
Others are
just not listening, or not looking. Why did they give him dry toast again this
morning when the clear instructions were for two of those sticky malt loaf
things that he likes, that the dietician recommended and that were in full view
on the kitchen counter? Why was Nick wearing socks with his toes sticking out,
bits of last night’s pasta still curling up on the seat of his chair, and a
shit smear on his bathroom basin that had been there for three days (I
deliberately didn’t do anything about it as I knew someone was coming in to
clean today, and I wanted to see if they would notice. Sure enough, they said
in their notes that they had thoroughly cleaned bathroom and kitchen, but the
shit smear was still there. I felt like putting one of my post-it notes beside
it with a big arrow, but in the end I didn’t.
It’s not
good enough. It makes it hard to relax. So I feel anxious all the time with
that awful infectious dread that has no exact source but just grabs you in the
chest and sits there. I know that I can’t sustain this and do the real work of
caring for Nick but it’s a real effort to lighten up and switch off, or move into
another gear.
But things
do give me hope. In the space of a few days, which is often the way, we have had
the extremes of understanding and kindness.
One, the
business exemption checking service, who wrote a stern letter billing Nick for
willful mis-use of a form at the dentist’s. Sorry??
Long story.
But to cut it short, Nick’s dear friend Dave from school had been alarmed by the
tale of the wobbly teeth. He arranged for Nick to have an appointment with
another old school-friend who is now a dentist.
This
happened while I was away for a couple of days, so Simon took Nick. He said it
was very moving to see the two old friends meeting again after all these years.
Nick needed a small filling and had a scale and polish, with a reminder to
brush more regularly and stay off the Snickers bars last thing at night. We
didn’t think any more of it until this letter arrived.
Apparently
Nick had signed the exemption form saying that he received ESA (and therefore did
not pay for his treatment) when actually since coming to Sheffield he only gets
contribution based ESA as his finances were so tangled that the income related
part of it has never been sorted out. Another thing I’m still chasing. So anyway, he should have paid the fee upfront and shouldn't have signed the form.
Simon
didn’t realise – he just assumed that Nick didn’t pay for his treatment – and
apart from a few flashes of lucidity, Nick will sign anything put in front of
him these days. So that was that, but now, for his perfidious attempt to dodge
the system, Nick is being charged a sizeable penalty on top of the actual fee.
I wrote at
once to explain that Nick has a serious impairment that affects his ability to
process information and of course this was a mistake, our sincere apologies, we
will pay the bearer forthwith. But that wasn’t good enough. They replied that
we would need to send a letter from a medical professional confirming that the
illness in question would have that effect, and one form Nick giving his
permission for me to discuss the case on his behalf. As well as prompt payment
of the penalty along with weekly interest that was now accruing. If they decided that
there was justification enough to waive the penalty then they would perhaps
refund it.
Give me
strength!
I have sent
the proof they asked for and paid the original fee – stuff their penalty! –
and fumed
to myself about the extra time it takes up to contact the GP and ask her to
write the letter (an email won’t do), and also compose and print out a letter
for Nick to sign. Not for the first time, I wish people- organisations, I mean –
had a clue about the enormity of work involved for the average carer to just keep
the wheels on the road. They genuinely seem to think that we have nothing
better to do than gather six different forms of evidence and proof of I.D in
hard copy, then send them all first class with recorded delivery.
If only
there were some shortcuts for all this admin so that I don’t have to waste another
afternoon jumping through other people’s hoops.
And then,
just as I was feeling really low and that the milk of human kindness had
definitely gone sour, I bumped into Nick’s upstairs neighbour at the paper
shop.
“I’m so sorry” he said, “I did some research on your brother’s
illness and it’s awful isn’t it? And he’s not going to get any better. Poor chap.”
He asked if
there was anything he could do to help. You’ve just done it, I said. You’ve
taken an interest – you’ve cared. That means so much.
It means so
much that another person gets it, understands a bit about the situation. I realize
that maybe there’s something I can do to ease my frustration with all these time-munching
organisations. Who knows, it might make a difference and it will make me feel
better.
So, every
time I have to deal with the council, the benefits agencies, anything official
like the dental exemption checking service, I am going to include a leaflet
about Huntington’s in the envelope. I’ve started doing this with all my
official correspondence. Just so you know, guys!
