I
wake and hear the familiar sound of Nick juddering and pitching in his sleep
downstairs. Then I realise we are alone in the house and it’s just the noise of
builders working on the house across the road.
It
has been an intense and stressful week but we all got through it and last night
my brother went home to sleep in his own bed.
Just
as I had resigned myself to setting up a temporary hospital billet in the back
room here, with whatever fallout that might bring for the rest of the family
and our collective sanity (but what choice did we have?) we got the go ahead
that Nick could move back in to his flat. The joists were dry enough after all
to put down a floor and fit a new loo. Not fully finished yet but useable.
Oh
my god, the relief.
He is
really happy to be back in his own place and sleeping in his own bed, waking up
and going to sleep when he wants to and not having to worry about stairs or
anyone else’s agenda. And we can relax. A little bit.
But. This
is only a brief hiatus, I know that, before the next crisis. We can’t relax too
much, we had better get ready.
And I feel
a little bit more frightened inside. I sent out so many distress flares and
nobody answered except the Active Recovery team. And thank goodness for them, and
God Bless the NHS.
But all
those agencies who I thought were supposed to support people like us,
vulnerable and struggling and not sure what to do or how to cope?
Not a
whisper from our Huntington’s Advisor. No response from Housing. Nothing back
from the insurers after all the soothing reassurance that they’d find an
alternative property and get back to me within 48 hours.
But
specifically, not a whisper from our HDA advisor. Their motto is “We’ll be there.” But they weren’t. She
wasn’t. I felt really alone.
What I have
realized is, sending out distress flares when you are also looking after a
vulnerable person is a two-handed job. You need to scream for help and then you
need to keep screaming until someone hears you. But it’s very hard to do when
you are physically with the person, running around after them with full
waitress and valeting service and still want to give them some semblance of a
normal cheerful life.
I resolve
to be very careful in future about what to ask and how I use my available
energy. Try to have a breather today because it’s Sunday and start again
tomorrow.
