With or without you
What a week this has been. Our freezer suddenly stopped working after I’d just done a mahoosive shop and filled it with goodies for the lads. I spent a considerable part of the last few days trying to find someone to take all the fish, chicken, ice cream etc before it melted and had to be thrown away, someone to repair it who could actually come out this month (turns out that the heatwave has had a lot of freezers not being able to cope and throwing in the icy towel) and having huge cook ups of all the defrosting veg and fruit and other delicacies that were already too far gone to save.
This coincided with our son going on holiday, beautifully timed as when he’s home there are normally at least three permanently ravenous teenagers hanging around the house and raiding the fridge at all hours, and where were they when we needed them?
And my brother’s upstairs neighbour just lost the plot. He started coming downstairs and trying to get into the flat, even coming round the back when Nick had the door open, raging in just his pants and bright red in the face. At first I did the usual and tried to appease him but he was too mad and on Tuesday morning he went for me in the doorway, spitting and swearing like some demon in the Bible, and tried to shove me out of the way so he could get to Nick.
Thank God that two big male carers were there and faced him down but for the first time I was really physically afraid. We kept the doors locked and I spent a lot of the week taking Nick out and bringing him round to ours to get him out of the way; ironic that his TV has stopped working and the radio will only go up to a certain volume anyway so he hadn’t even had the music on loud, but we weren’t taking any chances. We were frightened. I was frightened of what he might do.
Meanwhile, the wet room is finished and it’s great, but someone had come in unannounced and painted all the woodwork and doors with white gloss paint, and Nick, who bumps from wall to wall like a fly trapped in a box, had bashed against it and got it all over his clothes.
And the fancy new super-loo, which I’d been told hadn’t even been ordered yet, arrived out of the blue and the fitters came to install it and of course the drilling and plumbing noises sent Vic crazy and there were bangings on the ceiling and screaming at the front door.
And also…well, a lot of other things happened but oh, in so many ways this was just a normal week. Crisis after crisis, quick thinking to be done just minute after minute with continuing threads to pick up and more unexpected things to deal with every single day. Trouble shooting, because there always seems to be some kind of trouble or disturbance around Nick. Is it him or is it Huntington’s? Do other people have this? I do wonder.
And all week the knowledge that Nick’s holiday is approaching, and now it’s today. We are picking him up in an hour and taking him to the coast where he will spend a week’s short break at one of the wonderful Revitalise centres specifically catering for adults with complex needs. We were very fortunate to get some funding towards this otherwise there’s no way we could have done it - do you have any idea how much these places cost?!
Though for good reason, I must say, as they have been so thorough in finding out about Nick’s needs in advance, who he is as a person not a service user, covering every detail. What kind of room he’d like, meal preferences, activities and daily habits.
I went to check it out and felt very reassured, the staff were plainly salt of the earth and loved their job, and there was a sense of inclusion, efficiency and warmth that you just can’t fake. I wouldn’t feel at all happy to leave Nick with his carers at home for more than a couple of days because they don’t feed him properly, they don’t clean up properly, some of them don’t even talk to him but half the time are standing in the kitchen looking at their phones; there are so many things they miss, and for all their bumbling good-heartedness they’re not really focussed on him.
But here I know they’re going to look after him.
He says he is really looking forward to it, and I am so happy at the thought of him being really well looked after, meeting new people, going on trips and having slap up meals and a change of scene. There is only so much we can do for him when it’s just us and I’m constantly struggling with the endlessness of all the day to day problems that keep on surfacing like a demonic game of whack-a-mole, never ever totally dealt with before the next one pops up.
And through so much of this hot summer he’s been sweltering indoors with the windows shut because we’re scared of the neighbour, struggling with all the tech that he relies on so heavily but as a result keeps breaking down, and unable to get out unless someone takes him. Never complaining. I want him to have some carefree time and some fun.
It feels like an adventure, the kind that we used to have when we were little and our parents would wake us up early to sleep again in the car on the early morning drive to the seaside. We’d have fried egg sandwiches made by our gran, wrapped in tinfoil, cold and greasy by the time we stopped for tea brewed by dad on a little gas burner but still delicious, tasting of holidays. It feels good to be going somewhere together again, and I think the anticipation will help mitigate the terrible discomfort he feels while travelling, stuck in the same position for too long.
And when we’ve dropped him off and waved goodbye? I don’t know what to do with the idea of freedom. It will be like the time we waved the boy off on his first school trip – light-headed, wonderful to be just us again with no parental duties, but also wondering what’s wrong with this picture.
However much I sometimes feel that this caring business and this illness has dropped a bomb on my life, Nick has changed everything and I don’t know if I would change it back.
This year has been nightmarish. Watching him lose so much, physically and mentally unravelling in front of our eyes, just the way Ma did, has been horrible. It's been a huge strain on us all and we're exhausted.
So I am looking forward to a few days of freedom, of just unfurling my wings a little. The thought of it already feels like the anticipation of taking off a heavy rucksack. But I am really going to miss him.