As a reader, I thought I had a reasonable grasp of what dementia was like. Besides pretty much every magazine article I’ve ever come across, I’d read Pauline McLynn’s novel Missing You Already, Roz Chast’s Can’t We Talk About Something More Pleasant, and Sarah Leavitt’s Tangles: I had an idea, at least, of what was in store, when Mum was diagnosed.
Dealing with it is a whole other story.
For a start, obviously, it’s Mum. Fifty years of history. So much emotional baggage. Whatever your feelings are about a parent, if you’re there when they start needing help, it’s unspeakably hard to reverse those lifelong roles. If they don’t know – don’t believe (because they can no longer assimilate events) – they need help, it’s that much harder, and if they vaguely suspect that they might need it but don’t like what that implies – well, that’s just a minefield of misery for all concerned.
Multiply that by an order of magnitude in our case because everyone involved is emotionally over-excitable off the bloody scale, and then another because we’re all also empaths, our emotions chronically bound up with everyone else’s – add a measure of family dysfunction, because who doesn’t? – and I’m not sure the words exist to fully render this picture in all its knotted, technicolour heartache.
And yet it’s so simple, according to the doctors. We’ve had many, most of them phenomenally unhelpful. Some have been blunt or downright callous, one was arrogant beyond belief, one properly negligent, one cannot make eye contact and seems to be trying to get us out of her office in record time. Not one, in the eighteen months since diagnosis, has explained the process of caring for someone with dementia. The government agent who came in January said Mum wouldn’t qualify for the government’s care plan; the most recent doctor snorted and rolled his eyes. Then he spelled out, in terms precise as knives, who we had to call in what order, what our options are and all their consequences. None of it is pretty. None of it is what Mum would want.
A thing I didn’t expect to be excruciatingly difficult is writing about it. Logic dictates that I don’t need to protect Mum from internet exposure in the same way I do the kids, say. I can write about her freely because there’s no chance of it impacting on her, not least because she won’t be around for much longer. And writing is my therapy, which god knows you need when you’re dealing with this stuff, not to mention the chance that my humble post might one day be the very thing that helps someone else feel understood, or find their way through the maze. That’s all stuff I live for. You’d think I’d be blogging my arse off.
But no. I keep coming up to the topic and balking. I write and delete, write and delete. I can’t decide whether the block is the desire to protect Mum, so strongly induced by the look in her eye – the animal look of not understanding, knowing she doesn’t understand, pain that she’s not understanding, terror of not understanding, fear of being patronised – or whether it’s just plain bloody overwhelm. Every dimension – legal, medical, ethical, emotional – is complex, fraught with implication, riddled with second, third, and fourth guesses, overlaid with our short, intense histories.
So as much as I would love nothing more than to be able to write about this in the calm, practical terms I sometimes hear in my head, I just can’t. It’s a painful bloody mess, start to finish, and there’s no getting away from it. Dementia sucks.