Cake and Fine Wines
I give the carers a lot of flak for being careless, but they do often see things on a macro level that I don’t.
Just before Christmas, one of the regulars asked if we’d thought about a reusable coffee cup with a lid, as Nick was spilling so many of his drinks in the plastic beakers I’d bought him.
“It’s not time yet!” was my knee jerk reaction, but sadly, it is. I just didn’t want to see it. The time has come for him to need a lidded cup, with a handle, and to drink from a straw.
Since the sobering dietician visit, we’ve been putting the build-up plan into action. Nick is getting an extra tea call with carers coming in around 6 when he wakes from his nap, to make him a hot chocolate or a milkshake, and a small snack. My son bought him for Christmas a cute lidded cup from the local cats’ shelter charity, with cat eyes on the side, to distinguish from the sturdy travel mug he now uses for his wine.
Lovely Helen the PA bought him a reusable metal straw, which is a genius thing, and it’s all made a difference – to his clothes, his table top and all the things on it which were frequently awash and corrugated with water wear, and of course to the amount he actually takes in.
Christmas has given him licence to eat, drink and be merry, and he’s steaming through all the chocolates, puddings and cakes that he’s been given. (I’ve hidden the bottles of wine for supervised visits and special occasions…) The carers have instructions to put cream and honey on his morning porridge and I dollop extra cheese and butter on his dinners. He's having a hot chocolate in the mornings too. At this rate he’ll have put on half a stone!
It’s still scary, though, seeing the changes. I kept finding rogue tablets on the floor and blaming the carers (many of them ARE careless, it has to be said) but on the occasions when Simon or I give him his meds, it’s increasingly difficult for him to swallow them. And there are a lot, so it’s too easy for one to be ejected and spat out across the room and you might be too busy patting him on the back to prevent choking to notice.
We saw the GP about six weeks ago to discuss changing to liquid medication, and this was referred to the pharmacist and then in turn to the neurology specialist. It was about time we had a review anyway.
Nick had an appointment to see him next week, so it felt like a good start to the new year with perhaps an adjustment to the meds, because Nick’s movements and swallowing are clearly getting worse, and I felt very relieved to think he’d be in safe hands there.
Yesterday we got a letter from the GP saying that there had been some confusion over the neurology appointment and that they were not expecting to see Nick next week after all, as they only had him down as needing a yearly review from now on.
I don’t know if anyone not affected by HD can even begin to understand the horror of this. Huntington’s is an aggressive, progressive, degenerative illness, where deterioration of all functions happens almost before your eyes – body, mind, everything. Sometimes a merciful plateau for months on end, then wham! a relentless downhill slalom in a matter of weeks.
So imagine a neurological specialist and clinician who maybe knows more about the ravages of the disease than anyone, only expecting to see an HD patient once a year. Does that mean they’ve given up? That there’s nothing more they can do? Or that their record keeping is not quite as vorsprung durch technik as you would have hoped for.
I’m sure it’s a clerical error. I’m pretty sure it’s the Nick factor striking again. But it has chilled my blood.
However, it is his birthday at the end of the week and we’re going to have a party. There will be wine, cake, whatever he fancies, and some of the people who love him.
I’m still wobbly-legged and weedy after a second bout of the flu, and have not much spare energy for organising, and half of the people on his invitation wish list are out of town or out of touch, and Vic the nutty neighbour has been banging on the ceiling again according to Simon; but there will be a party come what may.
With cake and fine wines! Nick used to love that film. And just the thought of saying feck it, and having a celebration of where we are now, despite all the changes and the fear that goes alongside, is a strangely cheering thing.