Did
you ever play that game? We used to love it when my son was a young sprog.
It
goes like this:
“Unfortunately
Nick’s bathroom door was wedged open for a month when the handle fell off. I was very worried that he was going to
get trapped in there again, as unfortunately it had happened before.
Fortunately,
he had been wearing his alarm pendant and the paramedics got him out.
Unfortunately,
the subsequent new handle did not last too long, no match for Nick’s renowned
super-strength.
Fortunately,
the council have finally come to do the repair and put a new door on. Hurray! I
don’t understand why the whole door has had to be replaced just for a new
handle but hey! what do I know. Gone is
the cat litter wedge, reinstated is his privacy, and that’s good enough for
now.
Unfortunately,
Nick has broken another remote control by dropping it on the floor.
Fortunately,
the lovely OT at the neuro service has given him a new gadget to try, an
articulated extendable arm thing that clips on to his table, with a robotic
claw to hold the remote control. Four days in, it seems to be working.
Unfortunately,
we now have a new casualty as Nick has somehow managed to pull the radiator
away from the wall in his bedroom. Unfortunately, it is right beside his bed
and had leaned onto him while he was sleeping and burned his shoulder.
Unfortunately the carers did not tell me what had happened but had carefully
made his bed around the weirdly leaning hunk of metal as if this was normal.
Fortunately,
I popped in to say hello and saw it and fortunately it was a warm day and I
turned the heating off. Fortunately I was able to ram a cupboard up against the
edge of the radiator to keep it in place until we can get it repaired.
Fortunately Nick is not badly hurt.
And
fortunately I had complained so vociferously to the council about the total bollox of the door
repair that they probably have us on a hot list now and someone will be along
in the morning to sort it out.
I
am not even going to talk about the carers, who unfortunately over the past year have
generated so much disruption and chaos in their wake that I sometimes think
they cause more problems than the actual illness. The service improved
dramatically for a while and then it all started to slide downhill again.
Lately they have hit a new low.
Unfortunately
we are stuck with them until I can find another provider, and I have been
feeling very helpless because it seems it’s not that easy.
Sometimes
it is all so overwhelming and over-facing that I don’t know where to begin and
it’s easier just to plod on, blindly. Full of such tenderness for my brother,
just wanting to protect him and make things as right for him as I can.
Fortunately,
we’re not as alone as I thought.
I
had already given up on contacting the care agency. Like the proverbial bad
boyfriend, they have stopped replying to my calls. But after the latest lot of flagrant
uncaring and a couple of sleepless nights fretting, I emailed the social worker
asking for her help. Then I spoke with Diana, our HDA regional advisor, today, and she immediately volunteered to take action. She will co-ordinate a meeting
with herself, the social worker and the NHS neuro-enablement team, assessing
Nick’s ongoing needs and whether the current care service is fit for his
purpose.
Not
just that – she asked, how are you both coping? Is there anything else I can do
to help?
So
much of caring happens alone, behind closed doors and invisible to the outer
world. So much of the time it seems that no-one is listening. You just get used
to taking on every burden because at least that way you know it will get done
in the end. So having someone ask how we are, and be ready to take on these
challenges with the extra clout of an organisation, is just jaw dropping.
I
realise that things won’t necessarily change overnight. But today I’m facing
things with a lighter heart, like a bullied child walking back into the
playground knowing that there’s a secret ace up their sleeve because now they’ve
got some bigger kids on their side. There is still all manner of trouble ahead, but today I feel fortunate to have the prospect of more support.
