Dementia: another e

© careerusinterruptus

Once I started reading about giftedness, it quickly became obvious that although I’m the only one who’s been confirmed , Mum, like my kids, ticks all the boxes. As a child playing the organ for church services, performing as a concert pianist in her teens before (and while) studying medicine and working in hospitals in Australia, Canada, and Denmark (as well as a stint studying Italian, in Italy), her asynchronous development, intelligence, and emotional sensitivity were always clear. She’s a perfectionist who loved and admired education. And we’ve long known Mum as the source of the AF-level stubbornness we all share.

It took me longer to understand that besides her belief in fairies, Mum’s anxiety (often dressed as control) also stemmed from a busy, undisciplined imagination, and that the physical sensitivities to smells and flavours, foods, metals, and unguents, are due to that same wiring. The hardest thing for me to see was that we share the typical giftie need for justice, albeit at different scales: I lose sleep over capitalism, for instance, while Mum remained angry over a classmate cheating on a test, for oh, 75 years. Like I said, all the boxes.

Now, Mum also has dementia. Just as a gifted child’s intelligence masks learning difficulties, Mum’s great big brain compensated for crumbling cognitive capacity for a long time. There was that time she phoned to ask whether she’d left her house keys at my place earlier, completely forgetting that she’d come to my place in a panic because she’d lost them, and that I’d given her tea and biscuits before escorting her home and let her in using my spare. But such incidents were so rare and so anomalous, and her other behaviour so normal (for her), that in retrospect it’s utterly impossible to guess when the disease started.

The second time a geriatrician tested her, about six months after diagnosis, Mum got a perfect, healthy score – and sassed him into the bargain, asking at the end of the consult whether she still had to remember the answers to the second question on the test. So it was just as well that she’d also asked him a different question twelve times during the hour, because as with any other 2e, the test alone would have returned a ‘normal’ result.

The other reason for seeing dementia as a second e, is that it helps both patient and carers understand what they are dealing with. Typically for dementia patients, Mum rejected the diagnosis, not only because she couldn’t remember the evidence we were observing, but because she felt patronised by the doctor. “How can she say I’m ‘highly intelligent’ and have dementia?” she demanded, angrily. “She’s treating me like I’m stupid.” I likened it to saying, “You are a marathon runner, and you have a broken leg.” It’s not the same, of course, because while a leg with appropriate supports will mend, Mum’s brain will continue breaking down, a chunk at a time, no matter how many supports we put in place.

The explanation worked, ish, although the combination of stubbornness, emotional pain, and the newly acquired learning difficulty, meant Mum still refused the diagnosis, pulling out her medical dictionary to dispute every one of the diagnostic criteria.

Since then, the things she’s lost are heartbreaking: we took her car away when she could no longer navigate the suburbs where she’s lived for 17 years; the tune for Amazing Grace is gone; she can only read short stories; when cool weather came, she didn’t know she had jumpers or slippers to wear; she can’t use the washing machine; she can make tea but not coffee, she can only cook chops, can only make ham sandwiches for lunch.

But when she determined to write her brother a birthday letter, he replied saying it sounded like she had all her marbles. She still plays the piano every day, and her Italian accent is so perfect, it makes the local deli owner tearful. When I mentioned someone who had lung cancer, she explained the anatomy (I never knew that lungs aren’t symmetrical, did you?) using correct terminology, though she hasn’t worked in a hospital since 1968. Then we debated dissecting toads vs frogs.

And this is the key, I think, the reason we have to see dementia in gifted people as another exceptionality rather than ‘just’ a disease. It recognises that the typical traits of persistence and intelligence can mask like nobody’s business, so testing needs to be nuanced and holistic. It recognises that we may have to educate and advocate for our parents in precisely the same way we do for our kids: for both ability and disability. Above all, it recognises that the intelligence – the need to interrogate, to ponder, to learn – remains, even when decades’ worth of skills, tastes, and memory are lost; that even when literacy has dropped to gossip-mag level and small talk falters, intellectual connection can still be made. Must be made, in fact, in order to meet our 2e elders where they are: gifted, with dementia.

Are you caring for someone who is gifted, with dementia? Would you like to share your story? I’d love to hear it!

My Mum has dementia, and it sucks

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, another because teh stubborn is genetic, 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.