Choice

Choice – it’s one of the biggest words you’ll hear bandied about when you’re caring for someone.

The big rule of person-centred care is that you respect the rights of each individual and as far as you can, support them to live as they would wish. As long as they have mental capacity, you must always give them a choice about how they want to do things, what they want to wear and what they’d like to eat.

I was thinking the other day how nice Nick looks lately, almost back to his old self if you didn’t look too closely. We bought him a lot of new clothes for Christmas and his birthday, none of them chosen by him but all by us thinking what he might like, and he looks fantastic. 

He’d always taken a lot of pride in his dress but in the last year of living on his own he’d been buying things that made him look ten years older. Shapeless jackets and baggy old-feller's trousers and slip on shoes.

By the time he came to Sheffield and was still more or less dressing himself in the mornings, he had really started looking like a funny old bloke, wearing an odd assortment of garments that didn’t go together at all. That was his choice, though. Now we’ve overridden it by buying his clothes ourselves, even though it’s him who decides in the morning which of them he wants to wear. Though the carers override his choice too when he wants the same socks four days running, because HD dramatically affects your sense of personal hygiene.  

Then there’s the wine, the chocolate and now the CBD. Nick became obsessed with the latter and wants it all the time. I’ve had to keep explaining that he can’t just binge on it as there was only a limited amount, when it’s gone it’s gone, and six lots at once really won’t make him feel better than one.

I’m rationing everything, including Mars Bars (which he’s not really meant to have in the first place because they’re a dietician’s nightmare. But he longs for them so), because otherwise he doesn’t know when to stop and will neck it all at once. I’ve tried giving him the benefit of the doubt, but rationing is the result of bitter experience and seems to be the only way to go. I might not exactly know best, but in his best interests I've got a pretty good idea. 

So if the person has capacity but limited understanding of the consequences and wants to do something that is going to be bad for them, then giving them a choice is tricky.

It still doesn’t sit quite right with me, but I’ve become the publican who’s seen it all, saying, “ That's all for tonight. You’ve had enough, sir”

Sharp Dressed Man

 “Right! We’re off to town!”

I can’t stand the sight of Nick’s manky sweaters any longer. Everything is ripped and stained, with holes in odd places. And as for his socks…

The beautiful soft cashmere mix jumper he got for Christmas is unrecognisable after many dinners spilled down the front, elbows worn thin with scuffing, its rich chestnut colour strangely tie-dyed after the carers had thrown it into the washing machine with his blue socks, towels and sheets.

“Classic”, I think, “the one time they actually did the washing” because when the laundry basket is getting full they are supposed to stick a load in the machine in the morning, then take it out at lunchtime. But they don’t.

I have darned the elbows of some of the jumpers – one that belonged to our dad, for instance, that we both felt sentimental about – and sewn up the seams that were coming apart, because Huntington’s turns even the mildest mannered man into the Incredible Hulk, arms bursting out of sleeves with the flick of a muscle.

So Nick needs new clothes. I wouldn’t presume to go and buy them for him on my own. He still has some say in what he wants to look like, though this is sometimes random – he can be very clear that he wants to wear his leather jacket, but with old baggy chinos and a grey prison-issue style sweatshirt underneath. And red and white striped fluffy Christmas socks. And his alarm pendant round his neck.

I thought I would take him to M&S. I used to go shopping there with one of my Alzheimer’s clients and they were unfailingly courteous and kind to her, but Nick has other ideas.

“I want to go to Boyes” – which was his default shop back in the northeast for practically everything that isn’t food. It’s one of those slightly old fashioned stores that seem to stock anything from shampoo to bras, from licorice comfits to weedkiller, fishing tackle to crayons and cool stationery, all under the one roof. We used to take the kids there for colouring books and sweets when they were little and we all loved it. And I always made a beeline to Boyes when I visited Nick, for their amazing supply of coloured lacy tights.  I’m not sure about the men’s clothes though.

I don’t even think there is one in Sheffield (oh, just did a search and what do you know, there is! Way on the other side of town though)

Anywhere else you’d like to try, Nick?

“Peacock’s” he says.

There was a branch of Peacock’s in Consett that was just stumbling distance from his house there and increasingly as far as he could walk. I know there’s one in town, on a pedestrian precinct with easy wheelchair access, so we’ll go there. Great. Though suddenly the film Rain Man pops into my mind with the Dustin Hoffman character insisting that he gets his pants from K-Mart.

Nick used to wear handmade suits with peacock lining and had a silk tie and matching socks for every day of the week and two for Sunday. Handkerchiefs too, peeping out of his breast pocket, sometimes in a contrasting colour. He liked cuff links and those elasticy things that hold up your shirt sleeves. Off duty, he still looked sharp and always had smart shoes that he kept in shape with a shoe tree. (I’ve never had a shoe tree in my life) 

He always wore aftershave balm and cologne and smelled good.

He still wears cologne but it’s what the carers help him spray on after his strip wash in the morning, and he can’t do up a button any more, let alone a cufflink.

I still iron his shirts though, and press his trousers. Increasingly, I think he just chooses the first thing on the pile when the carers ask him in the morning what he wants to wear (he says they do and I hope this is true) so I try to make sure that at least it is reputable. The carers don’t seem to notice his holey socks though, but maybe because they seem to wear out almost on contact – that Hulk thing again.

Anyway, we’re going shopping.