A Joint Effort
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.