I give the
carers a lot of flak for being careless, but they do often see things on a
macro level that I don’t.
Just before
Christmas, one of the regulars asked if we’d thought about a reusable coffee
cup with a lid, as Nick was spilling so many of his drinks in the plastic beakers
I’d bought him.
“It’s not time yet!” was my knee jerk
reaction, but sadly, it is. I just didn’t want to see it. The time has come for
him to need a lidded cup, with a handle, and to drink from a straw.
Since the sobering
dietician visit, we’ve been putting the build-up plan into action. Nick is
getting an extra tea call with carers coming in around 6 when he wakes from his
nap, to make him a hot chocolate or a milkshake, and a small snack. My son bought
him for Christmas a cute lidded cup from the local cats’ shelter charity, with
cat eyes on the side, to distinguish from the sturdy travel mug he now uses for
his wine.
Lovely
Helen the PA bought him a reusable metal straw, which is a genius thing, and it’s
all made a difference – to his clothes, his table top and all the things on it
which were frequently awash and corrugated with water wear, and of
course to the amount he actually takes in.
Christmas
has given him licence to eat, drink and be merry, and he’s steaming through all
the chocolates, puddings and cakes that he’s been given. (I’ve hidden the
bottles of wine for supervised visits and special occasions…) The carers have
instructions to put cream and honey on his morning porridge and I dollop extra
cheese and butter on his dinners. He's having a hot chocolate in the mornings too. At this rate he’ll have put on half a stone!
It’s still
scary, though, seeing the changes. I kept finding rogue tablets on the floor
and blaming the carers (many of them ARE careless, it has to be said) but on
the occasions when Simon or I give him his meds, it’s increasingly difficult
for him to swallow them. And there are a lot, so it’s too easy for one to be
ejected and spat out across the room and you might be too busy patting him on
the back to prevent choking to notice.
We saw the
GP about six weeks ago to discuss changing to liquid medication, and this was
referred to the pharmacist and then in turn to the neurology specialist. It was
about time we had a review anyway.
Nick had an
appointment to see him next week, so it felt like a good start to the new year
with perhaps an adjustment to the meds, because Nick’s movements and swallowing
are clearly getting worse, and I felt very relieved to think he’d be in safe
hands there.
Yesterday
we got a letter from the GP saying that there had been some confusion over the
neurology appointment and that they were not expecting to see Nick next week
after all, as they only had him down as needing a yearly review from now on.
I don’t
know if anyone not affected by HD can even begin to understand the horror of
this. Huntington’s is an aggressive, progressive, degenerative illness, where deterioration
of all functions happens almost before your eyes – body, mind, everything.
Sometimes a merciful plateau for months on end, then wham! a relentless
downhill slalom in a matter of weeks.
So imagine
a neurological specialist and clinician who maybe knows more about the ravages
of the disease than anyone, only expecting to see an HD patient once a year.
Does that mean they’ve given up? That there’s nothing more they can do? Or that
their record keeping is not quite as vorsprung durch technik as you would have
hoped for.
I’m sure
it’s a clerical error. I’m pretty sure it’s the Nick factor striking again. But
it has chilled my blood.
However, it
is his birthday at the end of the week and we’re going to have a party. There
will be wine, cake, whatever he fancies, and some of the people who love him.
I’m still
wobbly-legged and weedy after a second bout of the flu, and have not much spare
energy for organising, and half of the people on his invitation wish list are
out of town or out of touch, and Vic the nutty neighbour has been banging on
the ceiling again according to Simon; but there will be a party come what may.
With
cake and fine wines! Nick used to love that film. And just the thought of saying
feck it, and having a celebration of where we are now, despite all the changes and the fear that goes alongside, is a strangely cheering
thing.
