What
a week this has been. Our freezer suddenly stopped working after I’d just done
a mahoosive shop and filled it with goodies for the lads. I spent a
considerable part of the last few days trying to find someone to take all the
fish, chicken, ice cream etc before it melted and had to be thrown away,
someone to repair it who could actually come out this month (turns out that the
heatwave has had a lot of freezers not being able to cope and throwing in the
icy towel) and having huge cook ups of all the defrosting veg and fruit and
other delicacies that were already too far gone to save.
This
coincided with our son going on holiday, beautifully timed as when he’s home
there are normally at least three permanently ravenous teenagers hanging around
the house and raiding the fridge at all hours, and where were they when we
needed them?
And
my brother’s upstairs neighbour just lost the plot. He started coming
downstairs and trying to get into the flat, even coming round the back when
Nick had the door open, raging in just his pants and bright red in the face. At
first I did the usual and tried to appease him but he was too mad and on
Tuesday morning he went for me in the doorway, spitting and swearing like
some demon in the Bible, and tried to shove me out of the way so he could get
to Nick.
Thank
God that two big male carers were there and faced him down but for the first
time I was really physically afraid. We kept the doors locked and I spent a lot
of the week taking Nick out and bringing him round to ours to get him out of
the way; ironic that his TV has stopped working and the radio will only go up
to a certain volume anyway so he hadn’t even had the music on loud, but we
weren’t taking any chances. We were frightened. I was frightened of what he
might do.
Meanwhile,
the wet room is finished and it’s great, but someone had come in unannounced
and painted all the woodwork and doors with white gloss paint, and Nick, who
bumps from wall to wall like a fly trapped in a box, had bashed against it and got
it all over his clothes.
And the fancy new super-loo, which I’d been told hadn’t
even been ordered yet, arrived out of the blue and the fitters came to install
it and of course the drilling and plumbing noises sent Vic crazy and there were
bangings on the ceiling and screaming at the front door.
And
also…well, a lot of other things happened but oh, in so many ways this was just
a normal week. Crisis after crisis, quick thinking to be done just minute after
minute with continuing threads to pick up and more unexpected things to deal
with every single day. Trouble shooting, because there always seems to be some
kind of trouble or disturbance around Nick. Is it him or is it Huntington’s? Do
other people have this? I do wonder.
And
all week the knowledge that Nick’s holiday is approaching, and now it’s today.
We are picking him up in an hour and taking him to the coast where he will
spend a week’s short break at one of the wonderful Revitalise centres
specifically catering for adults with complex needs. We were very fortunate to
get some funding towards this otherwise there’s no way we could have done it -
do you have any idea how much these places cost?!
Though for good reason, I
must say, as they have been so thorough in finding out about Nick’s needs in
advance, who he is as a person not a service user, covering every detail. What
kind of room he’d like, meal preferences, activities and daily habits.
I went
to check it out and felt very reassured, the staff were plainly salt of the
earth and loved their job, and there was a sense of inclusion, efficiency and
warmth that you just can’t fake. I wouldn’t feel at all happy to leave Nick
with his carers at home for more than a couple of days because they don’t feed
him properly, they don’t clean up properly, some of them don’t even talk to him
but half the time are standing in the kitchen looking at their phones; there are so many things they miss, and for all their
bumbling good-heartedness they’re not really focussed on him.
But
here I know they’re going to look after him.
He
says he is really looking forward to it, and I am so happy at the thought of
him being really well looked after, meeting new people, going on trips and
having slap up meals and a change of scene. There is only so much we can do for
him when it’s just us and I’m constantly struggling with the endlessness of all
the day to day problems that keep on surfacing like a demonic game of
whack-a-mole, never ever totally dealt with before the next one pops up.
And
through so much of this hot summer he’s been sweltering indoors with the
windows shut because we’re scared of the neighbour, struggling with all the
tech that he relies on so heavily but as a result keeps breaking down, and
unable to get out unless someone takes him. Never complaining. I want him to
have some carefree time and some fun.
It
feels like an adventure, the kind that we used to have when we were little and
our parents would wake us up early to sleep again in the car on the early
morning drive to the seaside. We’d have fried egg sandwiches made by our gran, wrapped
in tinfoil, cold and greasy by the time we stopped for tea brewed by dad on a
little gas burner but still delicious, tasting of holidays. It feels good to be
going somewhere together again, and I think the anticipation will help mitigate
the terrible discomfort he feels while travelling, stuck in the same position
for too long.
And
when we’ve dropped him off and waved goodbye? I don’t know what to do with the
idea of freedom. It will be like the time we waved the boy off on his first
school trip – light-headed, wonderful to be just us again with no parental
duties, but also wondering what’s wrong with this picture.
However
much I sometimes feel that this caring business and this illness has dropped a
bomb on my life, Nick has changed everything and I don’t know if I would change
it back.
This year has been nightmarish. Watching him lose so much, physically and mentally unravelling in front of our eyes, just the way Ma did, has been horrible. It's been a huge strain on us all and we're exhausted.
So I am looking forward to a few days of freedom, of just unfurling my
wings a little. The thought of it already feels like the anticipation of taking
off a heavy rucksack. But I am really going to miss him.
