Reports are coming through of a serious sense of humour bypass on the Mel superhighway.
It’s one of those times where I just can’t seem to relax, whatever I do to try to switch off the anxiety it sits on my shoulder blades like a malevolent owl. Stretch my body, kick through the autumn leaves, find things to smile at – that owl of anxiety is still hovering. Even going for a swim and sitting in the sauna isn’t working its usual magic.
The crisis with Nick’s neighbours and imminent eviction is not getting any less acute.
The landlord and his assistant have an office in the same block and whenever I bump into them they want to know about progress on the move, and with each day that passes with nowhere else to go, the screw of anxiety turns another twist in my chest.
Nick seems oblivious. I can’t tell whether he even really understands what’s happening; recently he’s become very untalkative, monosyllabic even. I ask a lot of open questions and leave space for him to answer but he is non-commital.
Maybe it’s that insitutionalised thing I’ve seen in older people when you’ve just been in the system too long and your body and privacy are no longer your own and decisions about your welfare are made by others, “in your best interests”.
I suspect it’s also the effects of his new medications, calming the spasms of his body but damping down his mind too. It’s not easy to have a conversation with him or have any idea of what he’s feeling. I don’t want him to feel as if he’s being pushed around with no say in the matter, but his silence just adds to the pressure of trying to be his voice when I don’t even know if I’m saying the right thing.
Every night since we got the eviction notice I’ve been going round to make sure that his TV and radios are turned off (he has always had at least one radio in every room, and several CD players too) but sometimes, like tonight, I’m so tired that I can’t stay up late enough; I just need to go home, run a bath and get into bed. Nick wants to watch the ten o’ clock news, though.
He promises he will switch the TV off at 10.30 and text me to let me know it’s off, but I don’t hear from him and as it gets closer to 11pm I don’t know if he has closed it down or not, or whether he’s fallen asleep with it all blasting out. It's happened too many times before for me to ignore.
It’s not that I don’t trust him, but the cognitive blunting of HD and the effects of the drink mean that he says one thing and does another.
The drinking seems to have taken over his life and although it makes me dance up and down with frustration, I can kind of see why. Yesterday we looked at the new set of properties available on the council website on his laptop – or rather, I looked and he vaguely focussed on it. It’s like an estate agent’s register of properties with photos and tenant information, and filtered according to your individual need – in Nick’s case, an accessible ground floor property with an adapted bathroom. He is in band B, a priority case with an urgent need for re-housing. Unfortunately, adapted ground floor properties are thin on the ground as it is and to find one within this postcode will be a rare gem indeed.
I’ve made a bid for a bungalow in a not-very-fabulous part of town but we are not in any position to be choosy. We’re fifth in line, though that may change over the week, a bit like Ebay I suppose. All the way through this process (which I am new to anyway and not totally confident with myself) I was explaining what we were doing and how the system works, and before I actually pressed “Bid on This Property” what did he think?
“It looks very nice” he says. (It doesn’t) And, “I haven’t got enough wine for today. Are you going to bring me some more?”
The sodding wine!! Is that really all you can think about? I want to say, and sometimes I do. You're about to be evicted! We don't know where you're going to live! Isn’t it bad enough to have to live with this illness, when you can’t eat without a coughing fit, can’t button your shirt or put your socks on and can hardly manage to make a scrawly signature let alone write your name anymore – do you really have to zone yourself out like this, making it even more difficult to communicate or for anyone to see who you really are?
I hate being the enabler, the provider of the next fix, like a bloody methadone nurse. I do it because if I don’t he will go out and get some anyway, spending money he hasn’t got to get a taxi to the corner shop and back to buy their expensive box of high-percentage hooch, and quite possibly falling over on the way. Last time he did this he fell and hit his head and broke his glasses. I want him to be independent but just can’t bear the risk. If we do an online shop once a week, at least he has some say about what he wants and I can buy a lower alcohol wine without hazard to life, limb and pocket. I still hate it but what, honestly is the choice? He’s not going to stop. And for the first time, I am seeing more clearly why, because however upset and anxious it makes me to see him like that, it makes alcohol the main focus – not Huntington’s. He can feel that sweet fuzz of intoxication and forget about the illness, and if he falls over it’s because he’s had a little bit too much to drink. Forget about the illness for another day and just relax into a lovely blur. I always understood that it was his way of coping with something unbearable, but for the first time, I really get it.
Anyway, 11 o’clock comes and Nick is not answering his phone. I'm tense and fretting. Has he just gone to bed or am I about to get an earful again from an exasperated neighbour? I can’t relax.
My sweet son says, Come on Mum, we’ll go over together and check, so we make the walk one more time and find the whole place in darkness, no sound at all. Inside, just the regular sigh of gentle breathing. Thank God, it’s all turned off and we can go home.
Tomorrow, I resolve to go to the electrical suppliers and buy some timers.