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!

Random Reviews: non-fiction

I thought this book was going to be fiction, when my sister described it, but no: Louisa Deasey is a freelance journalist who one night fell in love with a comedian, Jim, whose humour had seen him blacklisted by most big-city venues. The disdain was mutual, though, because Jim’s great gift lies in his understanding and acceptance of the battered souls on the outermost fringes of Australian society: desert bikies, toothless miners, sex-workers, and the heartbroken Indigenous peoples dispossessed by these desperadoes and the big businesses they work for. Beloved by the hardest of men, he tours the great Australian landscape, hundreds of kilometres a day, in a packed Mazda. It’s a brutal side of our country that most of us never see, violently segregated by race and gender, and Deasey, in the passenger seat, records all of it – the fights, alcoholism, and vast beauty – with a journalist’s dispassionate eye. She is in love with Jim, and for the most part, that’s all that matters; her great gift lies in her willingness to strip her life down to its barest bones, to emulate Jim’s utter lack of preconceptions, and to absorb every lesson the wild landscape and their even wilder ride through it have to teach her, about who she is and what she really needs for happiness. It’s an especially poignant read now, when BLM and Climate Action protests demand each of us ask ourselves that very question, and so many are too scared to do so.

Back on track

Remember a couple weeks ago, when I accidentally created a new project for myself? Well it’s done, and it’s AWESOME, and best of all, it’s WORKING.

My brain, you see, swings dramatically between complete inability to find two neurons to knock together, or firing like the Sydney Harbour Bridge on New Year’s Eve. Some days I have so many ideas, I’m almost paralysed; other days I’m paralysed by having no idea.

While writing that other post, I realised I have two problems with lists: one is overwhelm – all those tasks with their little expectant faces, and a limited window of time/energy/weather – how do you choose? The other problem was keeping track of the lists themselves. Ruined, lost, buried, left behind, scribbled-over, forgotten. And that was just yesterday.

Then there’s the issue of detail. Say the dishwasher needs fixing. Put that on your list. Now find an appliance repair company, preferably this side of town, without a $150 callout fee. Three calls. Two don’t do dishwashers, one’s busy so you leave a message. He calls back while you’re cooking. Eventually you connect, make the appointment. That must go in the calendar – but your phone’s died, so write it down and hope you remember to transcribe it later. At 8:30pm you’ve made five calls, the job’s still staring at you, and you can’t do squat about it, now. But wait, there’s more! When Dishwasher Repair Dude finally arrives, the machine won’t make the grindy noise. But, two visits later (all the foregoing, again, twice over) DWR Dude has identified the problem and leaves, promising to send a quote. When you get that (and hallelujah we can afford it) he has to order the part …

For me, a process like that constitutes approximately 12,496 opportunities to forget where we’re at, to lose the list or the phone number, or to forget to put it in the calendar. As it happened, this time, although I didn’t actually forget, I still managed to let 24 days slide by while waiting for DWR dude to call to say the ordered part had arrived. And that’s just the immediate, today stuff – imagine amorphous long-term projects like trying to write, edit, and sell a novel, or figure out keeping the chooks off the grass. Where and how do you put those on the list? And where is the list, anyway? Someone’s yelling at me because apparently we’re out of ketchup.

My friend Jen calls it, “Adult-Onset Child-Induced ADHD”. I developed it in my 40s and I’m at the point where there is literally not one single habit I can rely on. Let that sink in for a second. Not. One. Habit. (We can talk about the grief of losing one of a central pillar of my identity, another time.)

Yes, I know there are literally millions of memory aids, tips and tricks, but the catch is – after you research and find what works for you, you have to be able to remember where you put them *and*, to use them. And even then, sometimes you’re just so frelling tired, so overwhelmed and fed up, so up to your eyeballs in mini house-fires and tornadoes, that you just don’t give a rat’s, even if you could find the damn bit of paper.

Enter, my new, beautiful, to-do book.

It’s an old gift from my sister, an A5(ish) notebook from what used to be Wyly Art Center (in Colorado, USA). It was hand-made by stitching little booklets into a rubber-flooring cover (cooooool! durable!), so it naturally divided into ‘subjects’. The pages are completely blank – no times or dates, which is fine since I never know what day it is, anyway. All I had to do, was divide my life into domains.

I gave myself a couple of weeks to play around with that – and to create the art. I don’t do a lot of art, but I should because it’s profoundly therapeutic. Besides the flow of creativity (and the freedom of allowing myself off-leash), the visual tickle of colour and texture produces a deep, cortical ecstasy that is better than meditation. Looking at it brings joy, every single time. That’s gotta help, when you’re trying to remember to send the audiologist’s report to the insurer, right?

Now I can flick through and find a job that fits. Sun shining? Look in Out, find something to do in the garden. Raining? Look In, or do some Admin. Got an arthritis care plan from the GP? Put the recommended rheumatologist, hand clinic, and anti-inflammatory in Vita – and make a note to check emails for the scan and X-ray referrals. Got some time online? CareerusInterruptus isn’t just about writing, you know – there are things to read, menus to tweak, connections to make. Word reminds me of each step. But if it’s 8:30pm and the kids are happy, maybe go Create, because there are places I want to go with that, too – and I don’t have to be distracted by a reminder that I still have to call DWR Dude. Making stuff is just as important.

It’s big enough that it’s hard to lose; it’s durable enough to survive living in my bag. I’ve been writing in it using glitter gel pens because why not? But it doesn’t matter; I can write (or draw) in it with any old thing, any old time, and the info’s there whether my phone is dead, pressed against my ear, or it’s post-screen o’clock. I love it.

And now I’m going Out into the garden, so I can cross some things off after yesterday’s rain.

Things Not To Say, episode 1: “Have you tried…?”

This post stemmed from two specific incidents – being irked by unsolicited advice myself, and helping a friend whose heart was broken by ‘expert’, solicited advice, badly offered. As I wrote, trying to unpack why this well-meant question is SO INSANELY INFURIATING – honestly it’s the fastest way to raise my BP – the more scenarios sprang to mind, because the crux lies in the giving and receiving of help.

The result are abstracted ‘I’ and ‘you’. Some ‘I’ is me, my experience; some is a deep empathy for others with similarly intractable problems. The ‘you’ could be the friend who said it to me this morning, or anyone else – acquaintance; teacher, doctor, psychologist, social worker – who assumes I’m here because I haven’t tried that one idea they just had.

Just don’t say it. Ever. That question is a communication disaster, relationship TNT. It will damage things between us, possibly irreparably.

“Wait, what?” you cry. “I’m just trying to help!”

Well, yes.

That’s the problem.

And here’s why, as someone who has tried.

First and foremost, I didn’t ask for your help.

Sure, I’m complaining. My situation sucks. That does not mean, though, that I want or need you to fix it. I might just need to complain. Complaining helps. It lets off pressure – the pressure of performing ‘fine’ for society. We, as a culture, are so allergic to ‘uncomfortable’ that the only accepted answer to “How are you?” is “fine”; anything else, we shut down. We don’t let people be sad, frustrated, angry, scared, or exhausted. Maintaining that face for your viewing pleasure, is exhausting.

I also think it’s bullshit. So sometimes I whinge because it makes me feel better, and sometimes I whinge because to smilingly gloss over troubles is just plain wrong.

If you try to help, you deny me both the chance to feel better and the chance to feel heard.

More importantly, offering unsought help shifts the balance of the relationship. You take power, since you presume to have something (insight) that, by implication, I lack.

Now, you may have a friend who’s been through something similar; you may have read about it; you may have the certificate, a long CV, and an office proving your expertise; you may even have helped scores of people.

But unless I’m in your office, paying for your help, then you have to knock that shit off. Actually, you should knock it off even if I am in your office, paying for your help.

Because whatever you know, I’ll wager my next two years’ sleep that I’ve spent more time in the ring with this issue than you. It’s been in my face, on my case, days, nights, weeks, months, years, decades. I know its contours, its fluctuating weight, the fetid smell of its morning breath. I’ve spent nights thinking about it and days reading and talking about it. Then I’ve read and talked and thought some more.

Above all, I have tried.

Yes, I tried that.

And that.

I have tried every fucking thing I possibly could.

It didn’t work, okay? I’ve dealt with frustration, backlash, fallout, side-effects, the side-effects of withdrawal, and crushing disappointments.

Then I’ve picked myself up and done more searching and reading, talking and thinking, because while this is one ornery, complicated thicket of an issue, I’m pretty ornery myself.

That won’t all come across the first time we chat. It won’t come across in a 15-minute consult or in the first hour. Hell, it might not come fully across in the first year we’re talking.

But assuming that that means I haven’t tried that thing you just thought of, devalues the sheer bloody effort I’ve already put in. I’m not stupid and I’m perfectly capable of using a search engine and a telephone. If it was simple as your first answer – your first ten answers – then I guarantee I would not be complaining now.

Which is why a knee-jerk, “have you tried …?” lights my fuse. On a good day, I might just think, “OF COURSE I BLOODY HAVE, THAT WAS 2010!” On a bad day, I might say it. Or worse.

That doesn’t mean I’m wallowing, refusing help, self-sabotaging, or complaining just for funskis. It means, you’re reminding me of failure. I know very well what I’ve tried, what I wish I could change but can’t, where I draw the line (yes, I’m allowed values, even if they make it harder).

I probably have a solution in mind. If I’m not doing it, I have reasons. Maybe, right now, I just can’t bring myself to try again.

Or maybe I’ve realised, all I can do right now is wait. Wait for the pain to pass, the panic to subside. Wait til this phase is outgrown, the therapy/medication/new routine takes effect. Wait til I get my strength back for another round. Wait til things change. They will.

All you have to do is let me get there.

You can help, by listening. Yep, that’s it. Remember, complaining may simply release enough pressure to let me breathe again.

Listen and acknowledge that this is hard for me (even if it doesn’t seem like it should be hard, to you). Remember, feeling heard and connected may be all I need.

Listen and respect and trust that I’m doing my best. Respect and trust that I’ve worked at least as long on this issue as you, and with, likely, a great deal more investment in solving it. Respect and trust that if I could do differently, I would. Respect and trust that if I want help, I will ask for it. This is how you let me keep my power.

If I do ask, remember that whatever I’ve said – whatever you’ve heard or read – you don’t know the whole story. At best your knowledge is vicarious, abstract, general. Mine is intimate, minute, painful.

If you must offer something, start by asking if I want your help. Ask what I’ve tried. (I’ll do my best to give you the short version.) Ask what I need. Ask what you can do to help. Offer chocolate, cake, alcohol, and/or hugs.

Just don’t – don’t – ask me if I’ve tried…



Reasons why my post is late #1:

On Designated Post-Writing Day I wrote a long, rambling post about – well. Not to fall into that trap again, I shall just say, ‘projects’.

As I wandered through my thoughts on this vast matter, it occurred to me that I needed a high-school style ‘subject notebook’, so I could organise my to-do lists by domain.

Damn! That’s actually a REALLY GREAT IDEA!

So I went looking to buy online, but (ahem, here I am, reining myself in again) not liking anything much, I went rummaging through the big box of notebooks we’ve collected over the decades, and there was one that was okay, I guess, if only …

… long story short, I’ve, erm, started a new project. But only a teeny-weeny little one. Honest.