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, 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.

Pause for a moment

This is a gratitude post, because the climate and Mum and the Federal election and the climate and Alabama and the climate and Murdoch and the climate and no sleep and oh, dear God, I cannot even bear to think about it. So.

1. Last night, my lovely sister took the kids out for dinner so the Skeptic and I could go celebrate our twentieth wedding anniversary. There have been many, many times in the past seven or eight years where I wasn’t sure our marriage would last another day, but fortunately we’d been together so long already that I was pretty confident it was just a phase. A long, crappy phase, to be sure, but a phase nonetheless, and I’m glad neither of us have quit trying to get back to how we were. That we both still want a future together. That is no small thing and it keeps me going.

2. I am grateful for the hours the Skeptic and I put in out back yesterday. Now that I’ve built the gate to keep the vandals out, he spent a couple of hours cleaning poop, feed and feathers off the patio and I could finally plant: kale, spinach, rocket, peas. Oat grass in portable beds for the girls. Dirt under the fingernails: best therapy there is.

3. I am grateful for the girls at the cafe where I write on a Sunday morning. They know my order; they always have a smile and a chat.

4. I am profoundly grateful for U2. Yes, I know: wankers. But they always, always make me feel better, especially when overwhelmed by global despair. I also appreciate, more than you can imagine, the technology allowing me to bluetooth music from my computer directly into my hearing aids while I work.

5. I am grateful for the homeschool group where my kids and I have absolutely found our tribe, the teachers and their kids being absolutely cut from the same crazy cloth. Wise, wry women and weird, wonderful children. It feels good knowing I’ll see them on Tuesday.

6. Last, but far from least, I have the best friends. I’ve rewritten this paragraph twice because the more I thought about it the more I had to appreciate: from Abbie letting me bounce bonkers business ideas off her (“So crazy it just might work!”) to Andrew lending me Factfulness (which promises to save me from the global despair) to Belinda volunteering so much for the Greens, to her son Sebastian doing so much painting, to Kirsty coming to help clean, to Sharon starting a group to make Boomerang Bags to Jo and Suz and the acceptance and encouragement they’ve offered with parenting, writing, homeschooling – my friends are everything you could possibly wish them to be and then more. Considerably more. They don’t just keep me going, they show me the way, and for that I am more grateful than words can ever say.

There. That helped.

How about you?

Progress

Oh, lord, it’s SO SLOW. When I’m lying awake at night (far more often than not) I sometimes feel like the changes occurring in my house could teach glaciers a thing or two about slowing down. The universe unfolds faster than the projects in my house.

This does not, of course, accurately reflect reality. It is just the horrible yawning mismatch between where I want to be and where I am; between what I want to do and what, realistically, I can do in any given 24-hour period. I feed the kids, I drive them around; I talk to Mum and get her, sometimes, to appointments; I feed the kids some more; I support their projects and their meltdowns and their social lives; I research and try to solve problems; I clean the cat litter and feed the chooks and oh, look – it’s time to feed the kids again and then begin the 47-hour circus that is bedtime so that I can lie awake chewing it all over. I get distracted, too, and spend an inordinate amount of time looking for my own stuff that I’ve put down and wandered away from sixty times a day.

So what tortures me in the small hours is the Great Undone. If you ask, I’ll tell you: I’ve dropped all my balls and then some. It’s not the stuff I didn’t cross off the list today, it’s the stuff that didn’t even make it on to the list. And then there are the dreams… Aw, hell. All of that, and more.

So this is a reality-check post. Evidence, to me, that progress is, in fact, being made, however infinitesimally.

Exhibit A: Mr Pixel’s room. Not yet liveable; right now, though, let’s focus on what’s different from the last snap. The walls have been painted, the tall bookshelf bought and assembled, the small shelves painted. The bed, oh the bed! Or as I’m trying to remember to call it, the Lego Station. Completely sanded, painted (two different colours). Shelves built on the left-hand side (barely visible in this picture). Right-hand shelves trimmed and new legs built to accommodate feet on the ladder end. Backboard shelves built and attached, corkboard bought and attached. Quite a bit of paint spatter has been scraped off the floor, an ENORMOUS amount of outgrown-treasures have been redistributed, more than a few childish artworks have been recycled. (For us, with all the emotions, this is probably the biggest step; it represents not just project progress but personal growth as well). Options for lights over the workspace have been researched. Most of his Important Treasures have been found homes on the shelves or in the cupboard. Still quite a bit to do, but progress. Yes, definitely progress.

Exhibit B: back yard

In the back yard, these two veggie beds have been built and painted. The pond (white blob in the back corner) has been filled and fish introduced; they haven’t died yet. Progress here is slower, less visible, as the vandals chooks still have the run of the place. Optimistically I bought plants to go around the pond, but they’ve all been dug up. Repeatedly.

In the front yard, the fence has been mostly constructed and painted; I still have to get someone in to build the front gate; there is still fence-levelling to do and a few pieces that need to be added on the side yard.

We have a plan for the road trip; most of the accommodation has been identified, so as soon as I find some sit-down energy I will start booking. I guess it doesn’t sound like a lot; for me, balancing destinations (far apart) against driving tolerances (short) and budget against comfort (specifically, not putting us all in one room too often, as it just makes the introverts cranky) – that took a lot of brain power and a lot of time.

In this period, too, we’ve got through both kids’ birthdays and both their parties; we bought a wood-burning kit that the three of us are learning to use; we set up CraftyFish’s fish tank (so easy to say! so hard to get right!); we have been letter-boxing for the local candidate in the upcoming federal election. It is not like I’ve been sitting on my arse, no matter how it feels at three in the morning. I just needed to remind myself of that.