Once
again, it seems to take a crisis to get things moving but the threat of
eviction has galvanised all sorts of services into action and actually pulling
together. What’s more, they have been calling me – yes, instead of the other
way round!
We
have many meetings lined up with different case workers. There is a sense that
they’re all going the extra mile to help us and I’m so deeply grateful that I’m
running out of ways to say Thank You.
Those
lovely girls from Shelter have tweaked a few things on Nick’s application for
social housing and now all we need to do is provide two forms of photo ID and a
proof of address; they will even take the burden off me by collecting these
from us and taking them in to the relevant department. I’m honestly bowled over
by the fact that someone is prepared to do this for us and how much time and
energy this will save me.
However,
there is tricky stuff too. They need a complete picture of Nick’s financial
situation and that’s where I feel as if I’m wading into deep, muddy waters.
Nick’s
affairs are extremely complicated. He went bankrupt about twelve years ago,
probably as an early manifestation of the illness; I can’t believe we didn’t
spot this at the time but there were so many characteristic things about the
onset of Huntington’s that I didn’t yet recognise. A lot of people seem to lose
control of their finances around this period, making rash decisions, reckless
investments and spending extravagantly. In Nick’s case, he set up about a dozen
different bank accounts to try to manage his money, some of them joint accounts
with a sleeping business partner who can no longer be located. There’s hardly
any money in these accounts but I can’t close them without permission from this
person and some of them seem to have occasional income from I’m not sure where. It looks as if they might even own some property together but Nick is hazy about the details. I am still trying to make sense of what is what.
My brother has always been the
sensible, financially astute one, but he’s no longer able to deal with or
explain his former decisions. He is certainly below the threshold though, as
despite my frantic budgeting, his benefits have still not been fully reinstated
and his savings are disappearing at a frightening rate.
Meanwhile,
Acme are continuing to come three times a day although they’ve been clear that
they don’t feel able to take Nick on long term as his needs become more
complex. They don't - can't do a huge amount with the time they have but they've agreed to feed the cats and hang up the washing and all
those little things that will just make everyone’s life easier, and so far they
have been super-efficient and really, really nice. Their carers all seem to be
beautiful black queenly women and after being so uncertain and worried I
suddenly feel once again that he is in safe hands.
It
is nevertheless a full time job for me to keep on track with the stuff of Nick’s
life: the medical appointments, the housing and social services appointments,
the forms to fill in, the bill paying, the moving money from one account to another so that he doesn't go overdrawn again, the radio to fix and the dicky telly to replace, the broken china to sweep up, the cleaning the loo and turning the mattress, the shopping, the cooking,
the prepping, the ironing, the rationing of the wine, the outings, the
entertainments calendar, the just being with him spending time, and the sheer
elephantine enormity of keeping it all together. Even the best case-worker in
the world can’t do all this for us.
