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”

Well did you evah?

What a swell party that was.

I was a bit wired and tense all day without really knowing why, just wanting so much for the day to go right for him. He’d had some cards already and in the morning we opened them and a few of the presents. Envelopes are beyond Nick now but he can tear open wrapping paper like a child, just flinging the bits on the floor, gleefully revealing some new aftershave, some chocolates and some audio books. An early Bruce Springsteen CD that he had always loved but had got lost or borrowed and somehow never replaced. A set of sturdy handled “good grip” cutlery to help him eat more easily. Some hankies and – piece de resistance – a very beautiful chunky pipe because we are trying medicinal cannabis as a muscle relaxant.

I am not totally convinced about this – is it just another avenue for his addictions? - but Nick says he really feels the benefit (well he would, wouldn’t he! I think to myself) and naturally both our teenage sons are keen to back it up with extensive research they’ve done on the internet. I’m still not totally convinced but if it makes him happy…and unlike the wine, he probably won’t be able to operate it on his own and will need some assistance. “What, from your lot?” said a friend, laughing raucously.

We said we’d drive him out to the countryside to have lunch in a nice pub, but I had gone over a kerb on the way and the tracking had suddenly gone AWOL so with the steering swinging wildly around like a dinghy at sea, we didn’t dare. It would have to be the nearest place with a car park, ten minutes from his flat. Which just happened to be a pub both Nick and I had worked in about a thousand years ago. All through lunch I felt terrible that I’d messed up his treat, but actually he said it was fun to be somewhere with so many memories of his younger self and all his antics.

And the party…I could just not have asked for more. We’d invited four friends of mine who have got to know Nick and really taken to him, there were the three of us, and lots and lots of food and fizz. Fizz all round. One friend brought flowers, another one some bunting from Nepal, everyone brought cards and wine and then, though I hadn’t dared expect he would really come, a surprise guest of honour – one of Nick’s great friends from way, way back who had seen the Facebook post and got in touch. I hadn’t told Nick as I honestly didn’t think he would actually come but it was like one of those tear jerking TV reunion shows to see him walking in to the room and Nick’s dawning register that it was him, his old mucker.

So it was a great birthday. A swell party. And more to come, even if our car is off the road and we have to push him in that blinking war-horse of a wheelchair with bits falling off it.