Ah, the
hope and excitement of that song “Things
Can Only Get Better” when Tony Blair was elected in 1994. I can remember
exactly where I was, can you? Sitting on the dry grass outside the People’s
Palace in Glasgow with friends, one of whom had been up half the night counting
votes. We were so excited to be part of a new generation of youth and hope, and
like so many others, we really believed that things were going to get better.
“Can you remember where you were and what you
were doing on that day?” I ask Nick, half anticipating the answer. I really want him to remember things, to
know what I’m talking about, just keep that flame of connection and engagement
alive, but his memory is so fucked up these days. It’s too big a question for
him.
“I’m not really sure.”
Things are
not going to get better, that’s plain. Politically, well, that remains to be
seen because this is not a blog about Brexit! But in terms of health and mobility,
memory and cognitive function, it’s getting a whole lot worse.
Yet I am
(mostly) optimistic. There is still so much to be glad about. Lately, I
have been making a nightly review of the day and all the things to feel
grateful for, and to my surprise, many of these revolve around Nick. The fact
that he’s still here at all, that he is such a trooper, so stoic in the face of
his illness and for all that life has dealt him, such a cheerful soul. He
drives me absolutely potty sometimes but his courage just knocks me sideways.
He has had
his new chair for a week, but the physio and ergonomic specialist who were
supposed to be talking through how to use it had to cancel their appointment
because of last week’s snow. So we’ve probably been using it all wrong but he’s
been whizzing about in it very happily and says it’s really comfortable. I am
not sure what to think – the castors that are supposed to lock it into position
seem to come unlocked with the force of Nick’s spasms, so he sometimes goes shooting
across the room. The other day I found him stuck in a corner like a big
capsized beetle, legs flailing, dangerously close to knocking over the TV and
unable to move himself forwards.
With luck,
we will sort some of these issues out when the physio visits later today, but
then we have the problem of the carers… The plan is that they will lock Nick
into place at his table at mealtimes, prepare and serve a meal, make sure he is
able to eat it safely and help him if necessary, wait for him to finish and
then move and lock him back into optimum position to watch TV. Hmmm.
Yesterday I
had left my usual instructions in the daily menu book.
“A microwaved ready meal of Nick’s choice” was the dinner suggestion.
After doing a massive shop at the weekend, there were loads of microwave
dinners in the freezer, which the carers are normally more than happy to
prepare as it saves them the faff of cooking anything from scratch – and I don’t
expect them to, they don't have enough time and that’s my job. Eating has become yet more difficult lately, he can't manage more than a small serving and I'm even having to cut soft pasta up with scissors and feed it to him.
But I was a
bit surprised to see what they had given him – a two person portion of sweet
potato mash that I’d put right at the back of the vegetable chiller in the fridge,
thinking it would go well with some soft fish or mince next time I came in to
cook for him. Enough for two, maybe three future meals.
But the
carers (who perversely, can’t seem to find things I’ve very carefully laid out in plain
view) had found it and without asking him for his choice, just served it up to
him on its own in a bowl, no fish, no nothing. And guess what? He had absolutely
yummed it. First thing he's managed to eat on his own, and finish, in quite a while.
So,
honestly, what do I know???
I don't hold out a lot of hope for their ability to manouevre the chair correctly. I think we have a rocky old road ahead there. But maybe in some weird unfathomable way, they have an instinct for what could work, and maybe I need to let go of my control freak reins a little and trust that they can do it.
Things may
not be going to get better but I tell you what, I live and learn.
