Making that move

On Thursday I put my mum into a nursing home. It did not go well.

The human mind is a strange beast. Even in the absence of dementia (and I don’t think I qualify for a diagnosis just yet, although sometimes it certainly feels as though I do) , the brain tends to paper over the cracks of reality and try to shoehorn the world into something that makes sense.

So even though my mother doesn’t know who I am… even though she talks about how she lives with her parents (who have been dead for over 30 years)… even though she says we went to school together… even though she had 3 raw sausages and a handful of strawberries in the microwave and was calling them dinner… even though she forgets that my dad is dead… even though she says the same things a hundred times in one 10 minute conversation – each time thinking it’s the first… I thought she was in some way still… her. Still… I don’t know… normal, for some twisted and barely comprehensible meaning of the word.

So the morning I put her into the nursing home, I dropped by her house around 10am, and told her that we had bought her a treat. That we were taking her to a hotel for a few days, so that she could enjoy some luxury. And it was plausible, because the nursing home really looks like a hotel. Things have certainly changed in the aged care industry.

She was excited, and happily fussed about, trying to get ready, and wondering what to pack. “It’s so unexpected, I didn’t know this was coming, did I?” she would say, at least once a minute.  I’d reassure her it was a surprise, she’d shove something random into the back and then say “Gosh! You’ve thrown me. I didn’t forget, did I? I didn’t know this was coming?”

So far it was going better than I expected. “We’re just going to stop at a cafe, mum, until the room is ready.” “Oooh, lovely! Are we going to your place?” “No, we’re just going to a cafe, then to the hotel.” “Ah! Ok. Are we going to your place?” and so on, around the merry go round.

While we waited for our coffees, my husband, Andrew, took some key photos and personal things to the nursing home, to try to setup the room to look familiar.

“I’m a bit flustered. What’s going on? I didn’t know this was coming, did I?”

As Mum got more agitated, I texted Andrew. “Run for it, she’s getting anxious, we have to move.”

The home staff could not have been nicer. They got us a cup of tea, while Mum admired the decor and said how posh it looked. But when we got to her room, things started to go rapidly downhill.

“Why is there a single bed? Where will you be? I don’t want to stay here on my own!” the questions were coming thick and fast, and she was starting to get really freaked out.

“I want to go home! You can’t keep me here!! Take me home! My parents will come and get me!”

The staff came to try to help me settle her, and brought us another cup of tea. Typically, now the threats came. “I’m going to call the cops! I’m going to tell them you brought me here without my consent. WHICH IS A FACT! You can’t keep me here! I’m not sleeping in a single bed! I’ll fall out of it! THIS IS CRUEL. HOW COULD YOU LEAVE ME HERE ALONE? This is so cruel. How could you want to leave me here alone? I’m not nuts. I’m going to call the cops. You’d better take me home, or I’ll call the cops!”

And on it went.

A truly lovely staff member named Lea came and persuaded Mum to go to lunch before she came home. She settled at a table with a lovely old guy and was soon chatting happily, but every time she looked at me she got agitated and started shouting about how she wasn’t staying. I made an excuse to get up from the table and suggested to the staff that I should go. In a move worthy of a slapstick comedy, the staff sneaked me out while mum wasn’t looking, and I scuttled downstairs feeling like a criminal.

Lea looked at me as the tears started to flow and said “Don’t you worry.  This isn’t unusual. You might have to bring her in 5 or 6 times before it works.”

The horror of that vision nailed me to the floor. I had barely survived doing it once. No way could I do it again.

So let the light guide your way, yeah
Hold every memory as you go
And every road you take, will always lead you home, home
It’s been a long day without you, my friend
And I’ll tell you all about it when I see you again
We’ve come a long way from where we began
Oh, I’ll tell you all about it when I see you again
When I see you again
–Wiz Khalifa, See You Again

 

There followed days of screaming and trauma. I was craven – I didn’t go back. My sisters spent a lot of time there, and when someone is with her she is generally almost calm, but constantly asking when her parents will come to get her. Left to herself, though, she freaks out. Nights are the worst, but there’s no actual good time. I have to keep reminding myself that it’s only been a few days. It can take weeks for a new patient to settle. There’s hope.

But now I know how much my own brain has been papering over the cracks in my Mum’s behaviour. This frightened child – crying for her parents to come and rescue her, while she shouts about calling the cops – this is not my Mum. I knew she was impaired. I knew there wasn’t much left. But I really wasn’t prepared for the descent into madness that the unfamiliar surroundings would trigger.

She wasn’t safe in her own home. This is the best possible place for her now. But it feels as though the only thing left that was truly her was bound to the shell of her home. Taking her out of her home feels as though, in trying to save her, we have lost her completely.

 

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This everlasting twilight

There’s a huge amount going on in my life right now. It’s all very exciting, and every day brings a new challenge, a new opportunity, and often a few things that make me – let’s be honest – squeal. Just a little. One of those things is the Superstars of STEM programme, which is an awesome opportunity to learn how to get the message of STEM and Computer Science Education out there into the world. I’m so thrilled to be a part of it, and I have a feeling it’s going to open a lot of doors. It’s incredible.

Even before the Superstars were announced, I was getting amazing opportunities to speak to scientists and create collaborations. My work has started to snowball in a way that means I get to pick and choose the best opportunities for my students, and I have to prioritise the things that will have the biggest impact. Professionally I seem to have stepped up a few levels in what I can achieve. It’s making me a little breathless. I’ve just hit the end of term 2, and right when I should be collapsed in a heap moaning about how exhausted I am, I find myself leaping around like the energiser bunny, making things happen.

Just as I was putting the finishing touched to a presentation this evening, I had a sudden urge to call Mum and tell her all about it. When my best friend died in a car accident I felt like that all the time – I would go to call her and then be hit afresh by her irrevocable absence. Eventually that settled, but with Mum it’s so weird. Because she’s not dead. Physically she’s actually in pretty good shape. But there’s no telling her things. There’s very little “her” to tell.

The other day she rang me (which I didn’t think she still knew how to do), and it took me 5 minutes to get her to understand my name. (Yes, you read that right. She called me, but she didn’t know who she had called.) When I used my family nickname she didn’t understand it at all. Once I spelt out my name she got it, but still didn’t know I was her daughter.

On the surface, we had a perfectly sensible chat. She told me she was thinking of retiring.

(She hasn’t had paid work in over 30 years)

She told me she hadn’t told her family yet.

(what does that make me?)

She told me she was thinking of travelling abroad.

(She gets lost 2 blocks from home)

We’ve lost her.

But she’s right here.

She looks like my mum.

She even sounds like my mum.

She’s right here.

But she’s gone.

That sharp pang of grief. The coming to grips with losing a loved one. It’s a dreadful thing. I know it too well.

But this? This everlasting grievous twilight?

This is the sharp pang of grief renewed every time I see her.

This is a new loss every day.

This has no end in sight. No relief. No closure.

Oh, I know they will come. But who knows when? There could be ten more years of this. Of having her right here. And losing her over and over.

So I can’t tell her. I can’t hope that she might be proud of me. She was sad when I left academia and became a teacher. She thought it was a step down. Maybe now she could see how far I’ve come. If she could still see anything at all.

Instead we share this everlasting grievous twilight. And I try to turn my face towards the sun.

 

 

 

 

Gluten free with bonus wheat

I was tragically disappointed tonight to find that the only place anywhere near us that does gluten free fish and chips appears to have closed down. In desperation I googled “gluten free fish and chips near me” and found that Mt Waverley fish and chips was listed. They didn’t say anything about gluten free on their menu, which always makes me nervous, but I have been pleasantly surprised before. My favourite restaurant of all time, The Smokehouse at Sorrento (now, sadly, also closed :( ), had a whole slew of gluten free desserts that it never listed on its menu.

So I called up Mt Waverley Fish and Chips and asked if they did anything gf. “Oh yes,” they said. “Burgers, souvlakis, and of course fish and chips.” I was really excited. I carefully checked that the chips were cooked in their own oil, to avoid cross contamination (which can make a coeliac surprisingly unwell). “Yes, we can do that,” they assured me. So I shelved my misgivings and ordered a really yummy dinner. I asked for a gluten free burger, having carefully checked that there was no onion in the burger (I am also fructose sensitive, which is true for many coeliacs). My daughter got a vegetarian burger. We got a bunch of other stuff as well, and I repeated that the chips and my burger needed to be gluten free. They cheerily agreed.

When we got there I asked them to be sure that the chips were gluten free. They pointed to the chips, languishing under a pile of – wheat flour battered – potato cakes and said “Those are gluten free.” I pointed out that they weren’t, as they were sitting with things containing gluten (it really does make me unpleasantly unwell), and they apologised and made us some fresh chips.

Feeling quite uneasy now, I checked on the burger. “The burger really is gluten free, right?” “Oh yes, one of them is definitely gluten free.” They were very emphatic.

So we took our food and headed home, where we found it rather difficult to work out which burger was gluten free, and indeed which one was vegetarian. One burger had no meat, just a fried egg, cheese, and some salad. One burger looked very much like a veggie burger, but it had bacon. There was a third burger, which looked relatively normal. All of them seemed to have the same kind of buns, and gluten free bread is usually quite distinctive.

So I called them and asked which one was gluten free. They checked the ingredients and said it was the one without tomato sauce. I pointed out that the buns all looked the same, and they said yes, but the burger was gluten free. The one without tomato sauce was definitely gluten free. By this point I was incredulous (and also feeling slightly queasy, having foolishly eaten some of the chips). I asked again if the burger was gluten free, and again they said yes. And then I asked explicitly about the bread. “Let me check with the manager,” the guy said.

And then he came back. “No,” he said, sounding a little sheepish now, “We can’t do gluten free bread. It’s normal bread.”

By this time I just didn’t know what to say. “I ordered a gluten free burger. You said you could do gluten free.”

“Yes,” he insisted. “The patty is gluten free. But not the bread.”

“I’m coeliac. You could have made me really ill.”

“Sorry about that. You can have a refund if you’re not satisfied.”

“IF? IF I’m not satisfied? You nearly made me really ill. Yes. I do want a refund.”

“You can come to the store.”

“You can’t refund me over the phone?”

“No, only cash.” (I paid with a credit card. Taking my money was easy, it appears. As was trying to poison me.)

At this point I gave up and went to brush my teeth, in the vain hope that I could avoid ingesting too much of the gluten that was almost certainly contaminating the chips. And now I am cooking a fresh dinner, while hoping that I am well enough to eat it by the time it’s done.

I ask you: how is it possible to even be licensed to sell food when you HAVE NO IDEA WHAT GLUTEN IS? WHEN YOU HAVE NO IDEA ABOUT CROSS CONTAMINATION OR HOW TO FEED THE INCREASINGLY LARGE PROPORTION OF THE POPULATION THAT SUFFERS FROM FOOD ALLERGIES?

If that was a nut issue, I have friends who could have died. As it is, coeliacs who inadvertently eat gluten can be unwell for days (as I very likely will be now), and it actually damages the lining of the gut. This is serious stuff. People can get sick. People can die. How can you sell food and not have the first idea about the consequences of getting it wrong?

So next time someone tells you that being gluten free is easy now, you might want to point them at this blog. It is true that a lot of places are very good at it. But the world is still a glutenous minefield for the unwary, and I was not wary enough tonight.

Now if you’ll excuse me I need to go throw up. Maybe I should go back to Mt Waverley Fish and Chips to do it. Bastards. No, not bastards. Fools. Culpably ignorant fools.

 

The brutal glory of term 2

I have whined about term 2 on this blog before. Probably every year since I started teaching in fact, but I’m a little afraid to go back and check. It’s true that it’s a particularly brutal term. We are marking assignments and exams, writing reports (I have 75 of them to write, and to try to make as personal, meaningful, and constructive as possible. My full  time colleagues could have twice that.), and preparing classes for semester 2, which starts on Monday, while we’re still finishing with semester 1. Once we’ve finished writing our own reports we will proof read each other’s, while teaching our normal class load and trying to hit all of the deadlines. It’s winter, we’re all tired, and workloads are just insane, as always.

For me, this term has been even bigger as I wrap my head around a new Head of Learning role, and have the opportunity to make some meaningful changes. I only finished my marking yesterday (apart from a few stragglers), I’ve still got most of my reports to write, and I’m painfully aware of how much I need to get done in the next two weeks, and over school holidays.

And, to be honest, I’m exhausted. When I collapse into bed at night I pass out almost instantaneously. I have nothing left in the tank, and a long, long way still to drive.

Which is why I was wondering whether I need to seek psychological help to understand why I organised a hackathon for today. This is something I don’t have to do. My friend & colleague Victor Rajewski started them early last year, and we have kept them running ever since. We don’t get time in lieu, or any pay, for giving up our Saturday. We have too much work to do to make it a reasonable use of time at this point.

And yet… and yet… despite my exhaustion, despite all of the desperate claims on my time, it was, as always, totally worth it. Three of my alumni showed up to help and to play – two of them graduated in 2012, so they haven’t been my students since 2011, but they still come back and help. The other graduated in 2013. And despite the age range – the youngest attendee was my 10 year old daughter, the oldest was me at 45 – there was no hierarchy. People were sharing skills, taking interest in each other’s projects, and playing games together.

There was hardware hacking, software hacking, and, yes, pizza (some stereotypes exist for a reason). We even got our maker space designed (thanks Jess!). There was the most amazing spirit of collaboration and camaraderie. Some of the year 12s ran workshops (thanks Dylan & Alex!), teaching some practical web skills and some embedded systems stuff.

It’s hard to describe how happy it made me to see people showing up and getting stuck into it. The hackathons aren’t perfect – we could probably use a little more structure and a little less gameplay – but they’re so much fun.

Nobody had to do this. We didn’t have to run it. The students didn’t have to come. The alumni certainly didn’t have to turn up (or collect the pizza – thanks Peter!). But everybody came together to share an interest in tech and maybe pick up some new skills.

I’m so tired. I’ll be spending my Sunday and probably most evenings next week finishing my reports, because I couldn’t do them today. But I wouldn’t have missed today for anything.

The day the front fell off

I can’t bear the idea that John Clarke is gone. Goodness knows there is plenty in the world to be disturbed by, and I have been closing my eyes and breathing deeply and, I admit it, turning my face away from the news. But this – this death of a 68 year old I never met – this is what broke me.

John Clarke and Bryan Dawe had a way of taking our lives, our politics, our society, and lampooning them – with straight faces and the driest of wit – so that even the most rabid fan of a policy or faction could see its absurdity, its unfairness, or its incompetence.

I will never forget the hundred metre track from The Games. When we don’t want to answer a question around here, we always say “Not that I recall,” “not to my knowledge,”, or “can I have a glass of water?” They’ve made me laugh until I couldn’t breathe more times than I can possibly recount.

When world events were more horrendous than I could bear, Clarke and Dawe always gave me hope, because not only did they get it,  they could communicate it so clearly, so eloquently, and so incredibly wittily, that it seemed that it had to be obvious now, even to politicians.

Death and I are old foes. He has come too close too often. I have railed against him through long and desolate nights. I have been shattered by him unexpectedly, and I have seen him coming and been unable to dodge him. He has taken people close to my heart, and who knew me inside out. John Clarke didn’t even know I existed, but his death comes surprisingly close, because he meant more to me than I even realised until this moment.

Isn’t that the cruel irony of death? That sometimes in losing someone you suddenly know how much they meant – too late to let them know. I wish I had emailed, or tweeted, or written to him somehow. I suspect I’m not alone in knowing now, in this moment, sharply and painfully, how priceless he was, and how grievous a loss this is to our public life, and our understanding of the world.

John Clarke made the world a happier, more bearable, more intelligible place. He helped us understand it. He made us laugh. He made us think. He made us better.

Who could ask anyone for more?

 

 

 

Wil to live

I went to a talk tonight. It covered Donald Trump becoming president, Climate Change and Climate Change deniers. It covered the post truth world, anti-vaxxers, and healthcare. It covered white male privilege, racism, and education.

And I laughed. I laughed until I almost forgot how to breathe (again. you’d be surprised how many times I’ve forgotten how to breathe over the years).

It took so many of the things that are wrong with the world, highlighted, examined, and derisively dismissed them.

It was a masterclass in story telling. In science, humanity, and compassion. In how to keep going. How to reach each other. How to listen. How to make sense of the nonsensical. And how to talk to the insensible.

It was incisive, but never cruel (although anti-vaxxers might disagree, but anything anti-vaxxers disagree with is worth paying attention to).

It was, incidentally, a lesson in not being late to a comedy show – I think Phill might agree with that, if he can ever bear to show his face in public again.

I love comedy, but I can’t bear the cruel sort. A friend had a bit of a facebook rant today about April Fools’ Day, and I have to agree. We don’t need more tricks. More lies. More fake news. More traps for the unwary. More “hah! I fooled you, aren’t I funny? and aren’t you gullible!”

We need more laughter, but Wil Anderson made it very clear tonight that comedy doesn’t have to be cruel. It doesn’t have to be mean spirited or vicious. Comedy is at its best when it’s clever, and well read, and thoughtful. When art holds a mirror up to life and laughs at it – when we see life as it is and know its absurdity – that’s real magic. And Wil Anderson is one hell of a magician.

 

Maintaining the Rage

Things they don’t tell you about dementia, number 542: Rage.

Not Mum’s rage. That does come and go – but it always did. It’s hard to tell where Mum ends and dementia begins. I’ve been a target of Mum’s rage as long as I can remember. That’s not new. But it used to go on for months. Now she forgets within minutes. There are upsides.

No, the rage that’s a problem is mine. I want to kick, punch, and scream until my throat is raw. I want to throw things at the world. I want to tear something down. Blow something up. Beat myself senseless.

Do not, at this point, tell me that everything happens for a reason. There is no reason for this. Dementia has no logic, no reason, no plan. Dementia is a senseless, random trauma that crushes the breath out of me even as it eats away the life of my mother.

I want to scream into the face of the world that it’s not fair, but the world couldn’t care less. I go home, go to work, care for my children. I do the shopping, take my daughter to swimming and answer my email, when all I want to do is fling myself at the floor and kick and scream “THIS IS SO UNFAIR!” But life has no time for tantrums.

Break all the records, burn the cassettes

I’d be lying if I told you that I had no regrets

there were so many mistakes, and what a difference it makes

but still it shouldn’t surprise you at all

You know

I said it shouldn’t surprise you at all, You know

Don’t look now but you have changed

Your best friends wouldn’t tell you

Now it’s apparent, now it’s a fact

So marshall your forces for another attack

It was always within you, it will always continue

And it shouldn’t surprise you at all

You know

Billy Joel, Surprises

I am so angry. I hate this. I want it to stop. I want it to end. I want relief. I want to know what’s coming and how we will handle it. I want to pretend it’s not happening. I want someone to bloody well fix it, and now. I want to be held and told it’s ok. I want to push the world away. I want to make it stop. I want to run away. I want to stay home and hide. I want to drown my sorrows in chocolate and icecream. I never want to eat again.

I can’t do this anymore, and I can’t stop. It hurts. Don’t tell me how to help her – she won’t let me. Don’t tell me to remember the good times, there weren’t many. Don’t tell me you’re sorry. Just stand well back while I implode. She would hate this, but she left years ago. There’s no connection. No parent. There’s nothing left but rage and fear. But I can’t walk away. I shouted at her today. God knows she provoked me, but she crumpled like a child.

I need to be angry. It masks the fear, the guilt, and the sadness. All I can do is maintain the rage.