Holding Patterns

Today my sister was shocked when my Mum asked her if she had any brothers and sisters. Mum wondered whose birthday she could see on her calendar (it was her grandson). Last week she asked me if it was my parents who had a house at the beach. I wonder if she sometimes wonders why I haven’t introduced her to my Mum? I wish I could.

Dementia, for us, consists of thousands of these moments, interwoven with snatches of lucidity. Some things seem to stick better than others – she often seems to know I have kids, but has no idea how many, or what they are studying at University (they are 9 and 12 years old), or even their gender. But it’s clear she no longer identifies as my Mum – except when she does.

And it’s obvious she doesn’t know my husband’s name, although we’ve been married for over 20 years. Except when she does.

And she has certainly reached the point where she can’t read a menu. Except when she can.

There’s definitely no way she could find her way to the local shops and back anymore, except on the days when she does just that.

This, I think, is one of the deepest and most unexpected traumas of dementia, for those trying to wrap their lives around caring for the patient: The astonishing lack of certainty. It’s a disease with no fixed pattern. No identifiable time frame. Nothing you can rely on from one day to the next.

She could go on like this for years. Or she could die tomorrow. Of course, that’s true of all of us. Life is far less certain than we would like to believe. We hedge ourselves about with calendars, plans, and timetables in an attempt to pin some predictability onto our lives, even though it could all evaporate in a puff of smoke at any moment. But the human brain is very good at inhabiting its self-created patterns and not looking outside itself to the terrifying possibilities of tomorrow.

“How we envy you, envy you! Lucky humans, who can close your minds to the endless deeps of space! You have this thing you call… boredom? That is the rarest talent in the universe! We heard a song — it went ‘Twinkle twinkle little star….’ What power! What wondrous power! You can take a billion trillion tons of flaming matter, a furnace of unimaginable strength, and turn it into a little song for children! You build little worlds, little stories, little shells around your minds, and that keeps infinity at bay and allows you to wake up in the morning without screaming!”  

Terry Pratchett, A Hat Full of Sky.

Dementia forces those shells open, and breaks them into pieces. Dementia is the reason you wake up screaming. Dementia keeps dragging you back to ceaseless, merciless awareness that today, tomorrow, or next week could be a catastrophic crisis. A shocking new fall downwards. A crisis whose shape you can only guess at. A crisis that you can see coming but can’t possibly prepare for.

How do we look away from that crisis and go on with the day? How do we stop flinching every time the phone rings, and dreading what we will see when we open her door? How do we grieve for the loss of our mother while keeping her alive as best we can?

There are no answers here. Only questions we can’t bear to ask.

 

Dementia sufferers

When you hear the term “dementia sufferer” I bet you think of people whose memory is going. Who may not be able to care for themselves any more. Who don’t even know their loved ones. And there is no doubt they suffer, but it feels to me as though my Mum has almost gone past suffering. True, she has moments of fear, of panic, and of loneliness, but for the most part who she was has bean eaten away, and emotions are so fleeting now that she never suffers for long. She calls in search of her parents, but five minute later has forgotten both the call and her parents. It is both the blessing and the curse of memory loss that nothing lasts for her anymore. The distress those calls leave behind, though, lasts a lifetime for us.

Today I ran the “Memory Walk” 3.5km run in support of Alzheimers Australia. There was a “roving reporter” interviewing participants about their reasons for being there, and on being asked to contribute I felt unexpectedly teary. I tell myself I am calm and contained, and that there is little I can do to help Mum apart from visiting, and taking care of day to day tasks like managing her finances and paying her bills. I tell myself I am ok with that, that I have come to terms with the reality of dementia, and that I’m not too stressed about it. It’s just part of life now.

But the truth is it’s a constant background strain – except when it is smack bang in the foreground. It’s a leaden chain wrapped around my feet. A deep and sickening terror in my belly. The one thing I know for sure about Mum’s dementia is that it’s bad, and it’s going to get worse.  Some days I’m pretty sure she doesn’t know who I am, although she hides it well. Some days she is angry. Some days she’s distraught because she can’t turn her TV on. Some days she thinks people are spying on her.

She won’t see a doctor. She refuses to let anyone in who she doesn’t know, so we can’t organize home assistance or get her any kind of medical care. We are literally waiting for her to fall ill or break a bone, so that we can get her some kind of help. There doesn’t seem to be anything else we can do.

We can’t just “put her into care” as people regularly insist we should. She’d walk straight out again. Last time we tried to take her to the GP she got out of the car in the middle of a major road, screaming that she was fine and that we had no right to force her to see a doctor against her will.

So we wait, and hold it together as best we can.  And while the dementia eats away at her brain, it eats away at our lives and our hearts. We field the frantic, angry, or distressed phone calls. We visit fearfully, wondering what we will find behind the door. And we wonder what the next stage down this long, torturous and painful road will look like. Will she have a fall? Will she get violent? Will she forget her way home, or lock herself in her house? Will she lose her purse again, as she hides it from the people spying on her? Will she leave the house naked? (She’s already forgetting pants a lot of the time.) Will she go searching for her parents?

Or will it be worse than all of that, in some way we can’t even begin to imagine? Her fate, and ours, closes in on us. There’s no pre-empting it, and no evading it. Perhaps the best I can do now is look that fate in the eye, instead of trying to pretend it’s not there. “Dementia sufferers” is a rather broader term than I thought. We all suffer, and none of us want to admit it.

 

 

Telling yourself stories

A long time ago in a galaxy… well… quite close actually, I taught a communication skills course to first year computer science students. Most lectures I bounced in, made a lot of eye contact, and taught a very interactive class. The first time I taught the public speaking lecture, though, I walked in, turned the lights off, looked down at the computer screen, and spoke in a monotone, trying to act as nervous as I could.

Obviously I was trying to make a point about public speaking styles, but I was shocked to discover that my heart rate skyrocketed, my breathing became shallow and rapid, and my hands began to shake. Pretending to be nervous had made me physically nervous, in just a few minutes. Once I turned the light back on and resumed my usual style, I calmed down very quickly.

In telling my students a story about how I was feeling, I was inadvertently persuading myself. Which suggests that I could just as easily tell myself a story about being confident.

In “A Hat Full of Sky”, by Terry Pratchett, Tiffany Aching learns a lesson about stories from Granny Weatherwax:

“For example, there was the Raddles’ privy. Miss Level had explained carefully to Mr. and Mrs. Raddle several times that it was far too close to the well, and so the drinking water was full of tiny, tiny creatures that were making their children sick. They’d listened very carefully, every time they heard the lecture, and still they never moved the privy. But Mistress Weatherwax told them it was caused by goblins who were attracted to the smell, and by the time they left the cottage, Mr. Raddle and three of his friends were already digging a new well at the other end of the garden.”

Tiffany is shocked, but this is how Granny explains herself:

“What I say is, you have to tell people a story they can understand. Right now I reckon you’d have to change quite a lot of the world, and maybe bang Mr Raddle’s stupid fat head against the wall a few times, before he’d believe that you can be sickened by drinking tiny invisible beasts. And while you’re doing that, those kids of theirs will get sicker. But goblins, now, they makes sense today. A story gets things done.”

Stories do, indeed, get things done. They are our most powerful way of communicating. We tell stories to remember history – and sometimes, in doing so, we change it. We tell stories to make sense of science. The plum pudding model of an atom was a story. It explained what we knew then. When we learnt more about the way electrons actually behave we needed a new story, so we went with electron shells in the Bohr model. When we knew more about electrons, we had to move on from the shells. At each stage, the stories were a powerful illustration of what we knew, but they were never quite the truth.

Studies have shown very clearly that facts don’t persuade people – in fact they often have the opposite effect. If you tell an anti-vaxxer that vaccines save lives, and show them all the stats, you will most likely succeed only in entrenching their belief that vaccines are dangerous. What’s more, they will tell you, with great passion, a story about this child they “heard about once” who became autistic after receiving a vaccine.

Likewise, if you tell a climate change denier that climate change is real and show them all the evidence, they will come back at you with ever more vehement arguments about conspiracies and warming pauses. They will tell you a persuasive, emotional story about deceit and manipulation. A story full of lies, but powerful nonetheless. Truth, despite all our intuitive, wishful beliefs to the contrary, is not a very powerful weapon.

A lie can run around the world before the truth has got its boots on.

Terry Pratchett, The Truth

Stories, though! Stories persuade us of all kinds of things. I’ve read a lot about rip currents over the years, but it took two people close to me getting caught in them to make me truly aware of them. Their stories are fixed in my emotional brain. If you tell me a story of someone having their chair pulled out from under them and becoming paraplegic, that sticks in my mind for years where all the stats facts and figures in the world get pushed out by the next thing to grab my attention.

Effective communication is about finding the right stories. Stories can change the world.  And it’s funny, because stories can change us as well. We tell ourselves stories all the time.

Stories like

  • It’s ok for me to break that road rule, because I’m in a hurry and there’s n0-one coming so it’s fine.
  • She hasn’t replied to my text and it’s been half an hour already – I must have offended her.
  • He would never have said that if he really cared. Obviously he doesn’t care. In fact he probably hates me.
  • I don’t have any real friends.
  • I’m no good at my job, and it’s only a matter of time before someone finds out. Ok, maybe I got some praise today, but they only saw one good moment. The rest of my work is awful. They only praised me because they don’t want to upset me, not because I’m good at my job.

Stories like this shape both our brains and our bodies. It’s very easy to get stuck in a particular story line. To tell yourself that the friendship is doomed, and interpret every subsequent contact in that light, and once you start thinking that way you might as well toss the friendship on the scrap heap. Or to tell yourself that you are no good at your job, and interpret every bit of praise as an aberration, and every criticism as confirmation. We trap ourselves in our own stories.

But the upside of that is that it’s also surprisingly easy to tell ourselves positive stories. Once you recognise the stories you tell yourself as just that – stories – you can start to reshape them. Give them a new moral, and a happier ending. The other day, feeling tired and unwell, I persuaded myself that I suck at my job.  I do that from time to time, when things are overwhelming. Especially when I am stepping out of my comfort zone, I find all kinds of specific reasons why I am no good, and why I should retreat back into a nice, safe cave.

But this time instead of giving in to it, I questioned it. I went back and looked through my positive feedback file, where I save many of the positive emails, cards, and comments from my students, and I ticked off each reason one by one. Every single thing my negative thinking tried to drag me down with was refuted somewhere in my feedback file.

Stories are very persuasive, and our own internal stories are the most persuasive of all. Fortunately there are ways to turn those stories around. Just like we need to tell the story of our scientific research in persuasive and compelling ways, we need to tell our own internal stories too, deliberately, to turn around those tough days. Keeping a positive feedback file is one technique that is hugely powerful. The Thankful Thing and The Successful Thing work too. Pick whatever technique works for you, or go with a mix. The trick is to tip the balance between positive and negative in your head.

I bet you’ve heard the saying that we need to give kids 5 positive comments for every criticism, but how powerful would it be if we could apply that to our own self-talk? How often do you actively praise yourself?

Maybe it’s time to start!

Death For Kids

I’ve shared this one with a few friends recently – sadly, there’s been a need for it. Conversations about death can be tough, especially with kids. I wrote this inspired by our own family’s experience of death, but also trying to encompass the huge range of experiences and emotions that can happen around the death of someone we know. No two situations will ever be exactly alike. No two relationships are the same. I hope it might be useful to some families dealing with death. Please feel free to share it around – but I do ask that you retain the attribution and a link to this blog.


 

There is a lovely old idea that no-one truly dies until their influence on the world has ended. Until the tyres they pumped up have gone flat. Until the clock they wound up has run down. Until they are no longer remembered. Until their footprints have been erased. Until their last impact on the world is forgotten.
Grief is hard to understand. Sometimes you can laugh and play as though nothing different is happening. Other times you can’t think of anything else but the person who is dying.
When you’re not quite sure how you feel about someone, or you don’t feel as though you love them the way you are supposed to, it can make dealing with them dying a lot harder. You sometimes wind up thinking: “Am I a bad person for not feeling sad? How can I laugh when Fred is dying? He’s my grandfather/uncle/cousin, why don’t I love him more?”
The truth is that some people are hard to get close to. Hard to get to know. Even hard to love. But even if you don’t feel so close to them, it’s tough to face the death of someone you know.
Wrapping your head around the idea that someone is going to die is one of the hardest parts of life. Everybody dies eventually. Most people don’t die until they’re really old, but that doesn’t make it any easier. How can someone be here one day and gone the next?
Facing someone’s death is really hard, especially if you know it’s coming, but you don’t know when. Sometimes that can go on for months, and it’s a real strain. It hurts, and it’s scary, and the people around you are probably grumpier and upset too. It’s kind of hard to get on with life when you don’t know exactly what’s going to happen, but you know it’s bad, and it’s probably going to be soon.
When someone dies, or is dying, it’s really important to gather your friends and family around you for support. You need to play and laugh with your friends, you need extra hugs, and you need to remember that we all cope with death differently. Sometimes you need to cry and be hugged, other times you just need to play and be distracted, and not think about it for a while.
Sometimes you might feel angry – cross with the person who has died for making things difficult, or cross with your family for being upset and upsetting you. Or you might feel angry with someone who isn’t stressed right now – because it’s not fair that they’re not stressed, and you’re dealing with something so tough.
It’s really important to remember that everyone feels all of these things sometimes. There’s no such thing as the right or wrong thing to feel. You might be sobbing one minute and laughing the next. It’s ok. However you feel, you have a right to feel that way. You need to take care of yourself, and to remember that it’s ok to feel the way you do.
Talk about it when you need to, and distract yourself with something fun when you need to as well. Be gentle with yourself, and cut yourself a little more slack than usual. We all make mistakes at the best of times, and times like this aren’t easy. You’re probably going to make more mistakes, get angrier, and cry more. It’s all normal, and the people around you will understand (even if they might be making more mistakes, getting angrier and crying more, too).
Most people have something called a funeral when someone dies. This is a formal get together where people make speeches talking about the good things they remember about the person who died.
Many people also have a “wake”, which is a kind of party where people eat and drink just like at an ordinary party, but they also comfort each other. At a wake people sometimes make short speeches, but mostly they just talk to each other, remembering the person who died, and listening to each other’s memories.
Some people might come to the wake who didn’t know the person who died, but they know you, so they want to come to support you, and remind you that you are loved.
Grief is really hard, and the feelings can be very intense sometimes. It can be overwhelming, and hard to imagine how you can get on with life when you feel this way. That’s when you might need an extra hug, or a bit of time out. Remember that it gets easier with time, and also that it goes up and down – sometimes you might start feeling better, and then feel worse again. Grief sometimes comes in waves, washing over you uncontrollably, and then disappearing again quite quickly.
The best thing you can do is to spend time with people who care about you, and who make you feel good. Remember that it’s hard for all of us, and we can all look after each other and comfort each other.

Work-work balance

Anyone who knows me, reads this blog, or makes the mistake of asking me what I do for a living knows that I love my job. I will rave about it endlessly at the slightest opportunity. To be frank, I’ll rave about it even if the opportunity is not presented. I sometimes think I need to wear a warning label when I meet new people. “Caution: do not get me talking about teaching. I never stop. Back away. Don’t make eye contact. Sorry.”

I am aware of the concept of work-life balance, in much the same way as fish are aware of hats. They might know hats exist, but they don’t see the personal relevance.

I am technically half time, but for the last 5 years of my career – my first time teaching in a High School instead of a University – I have used my days off as time for meetings, lesson planning, marking, and creating bold new units that have never been taught before. Chatting with an academic recently about a new Data Science unit I’m planning, he commented that it was fairly ground breaking teaching that sort of stuff at undergraduate level. Teaching it at High School is entirely terra nova. Which is fine, because everything I’ve done so far at my school is terra nova.

And I love that. I really do. It’s thrilling for me, interesting for my students, and a massive sea of opportunities open to us all. It’s a really wild ride. But it takes time, and vast reserves of energy. I could not do so much innovative stuff if I were full time, and even part time I find I am pushing myself to the limit and beyond far too much of the time. I end each term exhausted to the point of illness. I end the year with absolutely nothing in reserve, and deep in energy debt. And I’m not alone in that – I see it all around me in the staff room every December.

I’m becoming aware that I can’t keep working this way. It’s sheer delight having a job that I want to really throw myself into. But I can’t keep flinging myself at it so hard that I smash when I hit the end of term wall. It’s not good for me, and it’s incredibly tough on my family. When I pick my kids up from school I need some energy left for them, and all too often that’s just more than I can manage.

It’s simple enough to plan boundaries and specify ground rules, but they crumple in the face of opportunities. I just can’t say no. If there’s an opportunity for my students I’ll take it, without stopping to think about whether I have time. If a student needs extra help I’ll give it, and around yard duties and only being at school half the time, that sucks up my free time really fast. Being there full time wouldn’t help, though, because then I’d have twice the teaching load.

I guess what it comes down to is that I have to learn to compromise before I am compromised. I have to learn that I can’t do everything all at once, and that as one person I can’t offer everything either. Sometimes that means this year’s students won’t get every opportunity. Sometimes it means the curriculum won’t change as much as I want as soon as I want it to. Sometimes it might have to mean that while help is available in class time, I can’t offer up every one of my lunchtimes.

Balance doesn’t come naturally to me. If my students need help, or want to do something extra, I want to make it possible. So I’m looking for tips. How do you manage balance? How do you avoid burnout in a job you are passionate about? The last thing I want to do is become someone who is just marking time, but there is surely some middle ground I could learn to inhabit. Who has some clues?

 

 

 

 

 

Letter to my teenage self

At 44 I’m still a work in progress. I had a pretty rough time socially, as a teen, although once I got to uni things improved dramatically. But there’s some stuff that took me so long to work out, it’s just embarrassing. Some of it I know intellectually but really struggle to apply, other bits I am still coming to grips with. So in writing to the teenage me, I’m also reminding a 44 year old who really needs to learn to stand up for herself. Maybe one day she’ll listen. This is a list of the stuff I wish someone had told me when I was a teenager. Or indeed anytime in the last 44 years.

  1. Being different, thinking differently, and acting differently are the things that are singling you out and getting you teased as a teen. But these same traits are huge advantages once you grow up. If you can think clearly about it (which I know is a challenge through the fog of shame, guilt, and anger that teasing makes of your brain), all those people who happily follow the herd aren’t going anywhere new or interesting. People who think so far outside the square that they don’t even know where the square is – those people will change the world. Outside the normal is where you find opportunities, new perspectives, and solutions. It’s where you want to be. It gets better here.
  2. Your own judgement of your actions is what matters. Don’t let anyone else dictate to you how you judge your own behaviour. Ask yourself whether you did what you believed was right, and treated people the way you would like to be treated. If you didn’t, then do your best to make amends. But if you did, then you have the right to defend yourself. Which brings me to point 3:
  3. Defending yourself assertively is not an act of aggression. There is a difference between calmly stating facts, and attacking someone else. Learn to defend yourself and make the truth clear. Sometimes this means taking a deep breath and thinking calmly about the situation before speaking. That’s ok. No-one has a stopwatch out, and one deep breath can completely change the outcome. Sitting quietly and allowing yourself to be slandered in the name of “not causing a fight” will not end well for you or for anyone else. Learning to speak out before you either explode or give up (or both) will make your life immeasurably happier and more successful in the long run. Even if it hurts like hell in the short term.
  4. Sort out your own behaviour. Don’t waste time judging other people’s actions, or wishing they treated you differently. You can’t change someone else, but you can certainly change yourself and how you respond to them. Look at how you handle situations, and consider how you could do better next time. There’s nothing more potent than learning from your mistakes. Fortunately there will be plenty of learning material in your life! Also, a little compassion goes a long way. Remember that you never know what’s going on in someone else’s life, so cut the people around you some slack.
  5. Admit it when you don’t know stuff, and value the stuff you do know. Trying to bluff your way through not knowing something only ends in embarrassment at best, disaster at worst. But when you do know stuff, be confident and stand up for yourself and your skills. They have worth. You have worth.
  6. Speaking of worth, it lies in what you do, what you know, and how you treat people. Never in how you look, what shape you are, or whether you shave your legs. Never. Wear what feels good and makes you happy, and damn the torpedoes.

I think that’s enough. If you can live by all of that, then things will mostly work out. But don’t forget that you’re not perfect, and also that there will be rough patches you can’t control. You are loved. Don’t forget to allow yourself to lean on that love. It will save your life.

 

Smokehouse Farewells

“Changing was necessary. Change was right. Masklin was all in favour of change. What he was dead against was things not staying the same.” Terry Pratchett, in Diggers.

January 25th is coming, and it’s coming way too fast. If I had the money and the time to spend every single night going out to dinner, I would spend the whole of January at The Smokehouse Sorrento, before it closes its doors for good in less than a month.

Run by delightful people David Stringer and Elizabeth Blane, The Smokehouse is our favourite restaurant in all the world. We found it when I was heavily pregnant with my daughter, who is nearly 9, and we basically stopped going anywhere else in Sorrento from that night onward. The food is just glorious, which is a useful quality in a restaurant, but it’s not just about the food.

It’s about walking in the door to be greeted like long lost friends, even the first time you go there. It’s about every allergy and intolerance being catered for not simply ungrudgingly (which is often the best you can hope for elsewhere), but with a wholehearted determination to make your meal not merely safe but actually delicious. They seem to have this fundamental belief that everyone deserves not merely to eat, but have a really awesome meal.

If you have coeliac disease you tend to resign yourself to simply keeping fed, and sometimes even that is too hard. (On a recent trip to the US, when asked if the chicken in a salad as gluten free I got sneered at –  the friends I was with were outraged on my behalf, but I barely noticed. I was used to it.)

At the Smokehouse, though, you have choices. The pasta dishes can be done gluten free. The gf pizzas are just amazing. Nearly all of the mains are gluten free, or can be done that way. And it turns out that nearly all the desserts have gluten free versions which are indistinguishable from the real thing.

Years ago one of the desserts on the menu was a chocolate mousse cake that was on a pastry base and therefore not gluten free. Every time I made a booking David would carefully set aside a portion of the mousse for me while making the cake, so that there was a gluten free mousse waiting for me. It got to the point that I didn’t even have to ask. When I once decided not to have mousse because I couldn’t manage a whole serve, David provided me with a tiny serve of mousse, complete with cream and a mint leaf, to make sure I didn’t miss out.

There are little things, too, like conferring seriously with the kids over which colouring sheet they would prefer. Like remembering my food allergies and pointing out which of the specials is safe for me. Like happily altering any dish to make it safe. Like making spiders and milkshakes that kids and adults alike find irresistible. Like a house-made hot chocolate blend that is just incredible, that I rarely order because I am too full of mousse to manage anything else for days.

Sometimes taking kids to a restaurant is a sore trial both for them and their parents, but for the last 9 years our kids have clamored to go the Smokehouse, and we get into severe trouble if we try to leave them behind and have a night there on our own. Our whole family is going to be devastated when there is no more Smokehouse to visit.

Going to the Smokehouse is like visiting beloved friends. Friends with an amazing winelist and extraordinary talents in the kitchen.

So whether you’ve never been before, or know it well, go to The Smokehouse Sorrento before January 25th and enjoy the best restaurant experience of all time. And cry with me on January 25th when we say goodbye.