On Christmas, for my mom

As I write this, it’s Christmas Day. That’s the day after my mother’s favourite night of the year. Growing up, Christmas was my favourite time, too, because my mom liked to bustle the month of Advent away, filling the house with the spirit of her remembered Christmases in Germany. She spent much of her childhood in poverty; her family were WW2 refugees from what was then East Prussia, on the eastern Baltic coast. When they were displaced to northern West Germany (Schleswig Holstein) in spring 1945 they had very little but safety to their names.

And they had Christmas. My mom used to love to tell me the stories of her rough and tumble post-war growing up, and her best are the Christmas tales. There’s the one about the cookie dough: how her mom would make huge vats of cookie batter and then send the kids over the fields to the nearby village of Stadersand, where the local baker would cook them (the family had no oven – they had only two rooms!) before sending the kids home with the finished biscuits, plus dire warnings not to eat them all on the way. And there’s the one about the cardboard farm. My grandparents had to flee their Prussian farmhouse with exactly one cartful of stuff, much of which was lost en route to Schleswig Holstein; during the first Christmas after the war they felt keenly the loss of their things. Unable to buy his six children Christmas presents, my grandfather made them a farm full of toy animals from cardboard and wood. My mom remembers that homemade toy farm to this day.

This Christmas, 2014, is the first one I can remember that my mom has not been in charge of the preparations – that she hasn’t decked the front room, prepared the Rolladen on Christmas Eve and the turkey on Christmas Day. It’s the first Christmas that has been, for me, work more than pleasure. It’s the first Christmas that has been, for my dad, barely a respite from what is now his routine exhaustion.

My mom is suffering from dementia: she has been in a wheelchair since April, after an unimaginably steep decline through the late winter. Since spring broke, she has been unable to do the basic things for herself that the rest of us take for granted – and indeed that most of us couldn’t imagine not doing without also imagining a profound sense of shame. Since spring, she has become, more than my mom, my and dad’s shared burden.

My father and I first noticed something was wrong in February, when I was home from England for a visit over reading week. In the middle of one night, we found her trapped in the hall outside her bedroom, standing in front of her walker but having literally forgotten how to walk – how to move her feet forwards and backwards. That night was a cruel wake-up call indeed: suddenly dad and I both realised that the behavioural changes we’d been marking in mom, but not really reading closely, for some time were the signs of something much bigger that had just reached a tipping point. Since then my parents’ lives have become an endless parade of physiotherapists, personal support workers, paratransit drivers, neurologists, radiologists, MRI technicians, nurses, and, of course, neighbours. And – of course – amid all this new and unwelcome bustle my parents’ lives have changed radically and forever.

So has mine. I’ve got a full time job as a university teacher and researcher, but also a new, part-time, unpaid job as my dad’s caregiver. I happily and willingly do it, of course, but man is it tiring – emotionally more than anything. And, aside from my dad, nobody sees this work: it is profoundly invisible labour. (So much so that I’m secretly always glad to go along on difficult hospital visits, because I know the nurses will see how hard I’m working to keep everything together and will give me quiet pats on the back. I really need those.)

So this is the reality under which I’ve been living, working, teaching and writing this past year. I’ve kept it fairly under wraps in my professional life, sharing details only with close friends and colleagues, but a couple of things have inspired me, this Christmas holiday, to make my and my parents’ new life with dementia more public, and to introduce it as a proper subject on this blog.

First, I learned recently (although the story has been circulating since September) that one of my favourite childhood musicians – John Mann, of Vancouver folk-rock band Spirit of the West – has gone public with his diagnosis of early-onset Alzheimer’s disease. His example has spoken to me profoundly: rather than stop performing after offering a generic celebrity excuse, or choosing to be cagey about his illness and then bowing out amidst tut-tuts and pity parties, Mann has made living with his disease part of his on-stage work – and sharing his experience of the disease part of his celebrity persona. This might seem like over-sharing to some, but to me (and, I suspect, to many silent, thoroughly exhausted others) it seems both brave and necessary. Which brings me to reason #2 for this post.

As we now increasingly know, thanks to recent reports in major international newspapers* like the UK’s Guardian, dementia is serious, deadly, fiscally and socially expensive – but also little understood. People hear “dementia” and don’t automatically know what it means. Isn’t that when old people start forgetting things? Doesn’t everyone sort of get that eventually? Or: isn’t that like Alzheimer’s? (The answers, in order: yes, but the forgetting is just the tip of a very cruel, behaviour-change iceberg. No. Sort of – it’s complicated. It’s a disease of the brain, after all.) I’ve taken to telling everyone that my mom is “very sick,” rather than sharing automatically her diagnosis, in order to convey the spirit of my experience (dad and I are struggling with a terminally ill family member) without having to explain the details or deal with potential confusion and heaps of questions. On some level I am afraid, too, that if I tell interested strangers or acquaintances that mom has dementia, “very sick” will be immediately downgraded in their minds to “predictably old”, or “not like cancer”. Dementia has this problem, too: it doesn’t have a “there but for the grace of god!” scent about it. Ironically, even though many of us will get dementia, for some reason it doesn’t inspire the kind of immediate, empathetic anxiety that breast cancer or heart disease do. This is, of course, one part marketing genius, but it’s two parts bog-standard human narcissism: we meet people with cancer and are immediately triggered to be afraid for ourselves. Meanwhile, I often sense – though I hope that I’m wrong and merely projecting – that when we humans meet or hear of people with dementia, we don’t really know what to think. It’s distant, not of us. Not scary, just… different. I guess it sort of sucks, right?

It sucks indeed, though it often sucks in secret. And that’s something else I’ve learned since beginning this journey with mom and dad: the broader world may have a limited sense of the full force of dementia as an end-of-life illness, but the children and partners of dementia sufferers are a club, a community wherever we go. I notice telltale signs among strangers, ask a few questions, and suddenly I’m having a long, heartfelt conversation with someone I barely know (last month, the woman selling me pillowcases!), sharing details that I could never share with those, even those I know, to whom I choose to say the words “very sick”. Those of us in the club all agree on a sad fact: others want to be supportive, offer everything from pity (a natural reaction, but people, I do not want your pity, not at all) to very much needed logistical assistance (yes, please, walk dad’s dog!). But nobody, unless they have also been through this thing called living with a person living with dementia, has any idea – ANY idea – what it’s like, for real.

You know what, though? It does not have to be this way. Thinking about John Mann, about the effort he’s making to share his experience publicly as a kind of teaching, I realised that as a professional teacher I can (and should!) do this, too. So far, dad and I have been experiencing my mom’s illness as slightly lost, befuddled students – for example, figuring out where to turn for help, and how to keep that help alive, has been a challenge even for me as a professional researcher. (I’ll write about that in a future post.) But with every learning challenge comes a teachable moment, and I’ve decided that this forum is an ideal place to share both my learning struggles along this journey and the larger social lessons they might teach us.

I’m going to categorize this post, and future posts about my family’s dementia journey, in “activist bodies,” and I’ll tag each one “learning from dementia.” If you have feedback, your own stories to share, or research to pass along to me, I’d be grateful indeed. Kind words of support are also welcome – but please leave the pity at home.

Learning from dementia,

Kim

DCF 1.0

DCF 1.0

(My father and mother, during a happier Christmas past. I think it was 2008 or 2009.)

*There have been several prominent stories about dementia this autumn in the Globe and Mail as well, as some Canadian readers will know. The vast majority of these have appeared in the paper’s “Life” section, rather than in news – save those stories that feature politicians responding to or calling for more investigation into the disease. This strikes me as telltale: dementia is classed as a “living” (aka, “lifestyle” or “society”) issue, not a national care issue, 85% of the time.

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How to ride your road bike up really, really steep hills – with minimal weeping (Guest post)

I’ve been guesting again over at Fit is a Feminist Issue, the blog belonging to my friends and colleagues Sam Brennan and Tracy Isaacs, both feminist philosophers at Western. As usual, I’m writing about my life as an amateur road cyclist. But this post, while specifically directed at other road cyclists, features a transferable lesson about working through fear and anxiety to meet a really, really tough challenge that I suspect many readers of this blog will find valuable. It’s perfect for those of us (yup, that includes me) currently working madly on essays, overdue articles, and all the other stressful stuff that fills our so-called university “holidays”. And, of course, since we’re coming up on the holidays proper in about five minutes, this post – which features a story in the middle and some great photos courtesy of my coach, Jo McRae – might also make nice, diversionary reading for those of you still marking (that includes me too. SIGH).
Enjoy!

Fit Is a Feminist Issue

kim12

Regular readers of this blog know that Sam is not a hill climber, and that Tracy, while she has been assured she *will* be a hill climber, is not one yet. Hills are in short supply in the part of the world where Sam, Tracy and I ride our bikes together: the flat terrain and gently rolling slopes of farmland surrounding London, Ontario (100 miles west of Toronto).

I didn’t learn to ride a road bike in little London, however; I took to riding after my husband and I moved to (the rather larger) London in south-east England in 2012. That means I cut my climbing teeth in the short, sharp Surrey Hills, on the ridges in Kent, and in the South Downs, which features the gut-busting Ditchling Beacon, among other gems. While training for our epic London-to-Paris 24-hour challenge ride (read about it here), Jarret and I also did…

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On being in a panic and out of time

My first semester back at Western University ended yesterday; I’m now en route to London to see Jarret and Emma the dog. For the first time in several weeks I’m remembering what it feels like not to be always on the verge of late, of Not Finished, of out of time to do the million things my job requires of me. I do get it all done, though, and generally pretty well; I even finished a book manuscript, Theatre& Feminism, on Monday night. (It’s coming out in the excellent, student-centred, Theatre& series from Palgrave in 2015.) My friends say I get stuff done on on time and on spec because I’m amazingly productive; some of my peers, I know, would say I get stuff done on time and on spec because I don’t have kids (and they’d be absolutely right). My husband would say I get stuff done because I don’t mind being late for other stuff that isn’t so very important (he’d be right, too). I’d say, however, that it’s actually because I have a high tolerance for multitasking, and excellent time management skills. (The tardiness notwithstanding: I maintain modest tardiness is the price I pay for good productivity in an incredibly busy job and life.)

time-management

I’ve been thinking about time management lately because this is the time of year when everyone who works or studies on a university campus feels their stress ramp up. All the deadlines crowd in, and the gods of Getting Stuff Done separate the steady-ons from the panicked. Everyone’s tired, and everyone has too much to do; students come to class with heavy eyelids and and giant cups of coffee. I preach the importance of rest, of drinking water, of moderate partying (or at the very least of drinking water while also partying), of proper nutrition. The students try not to fall asleep while I drone on about vegetables and protein. Then, later, they come to my office hours or email me: they are sick, they are overwhelmed, they are trying but failing to keep up. Could they have an extension? Could I authorise their request for clemency?

In fact, what they really need is some of my productivity stardust – which is to say they need some help with time management.

We teach a lot of soft skills at university – especially in the faculties of arts, humanities, and social sciences where I have always studied and taught. We teach students to think critically. We teach students to read with care. We teach students to think about contemporary social and political issues and help them develop strong citizenship skills. (I’ve talked before in this space about what I think needs to be a shift from a “critical thinking” discourse in the academy to one that emphasises training in active, involved, thoughtful citizenship; click here for the post.) We teach students to speak in public, to write coherently, to make arguments in a methodical, extended form in essays. We encourage respectful discussion. In my classes we learn the value of performance as research, and of performance as public activism; we also use performance as another tool through which to make arguments and develop critical viewpoints on urgent social matters.

What we don’t really teach, though, is time management – and arguably this is what students need from us most of all.

Of course, “time management” is one of the transferable skills we often tout as coming with the arts and humanities territory: have a bunch of essays to do, and thereby learn to juggle the doing of them. Take five reading-and-writing-heavy courses or modules, and thereby learn to manage your workload across them. Maybe we even build time management challenges into our existing assignments and in-class tasks; I did that this year by creating a very short timeline for the first performance response paper I assigned in my modern theatre class, encouraging students to “blitz” the paper, and then offering an entire month (over Christmas!) for the second one, with the added challenge of not spending too much time on what is really a short assignment. I hoped the contrast would demonstrate for students what happens when you have short vs long lead times to negotiate.

But are we really teaching time management – even when we explicitly think we are? My short vs long experiment has no outcomes associated with it other than the paper itself, and while we’ll have a chance to reflect on it in second semester, when we write a research paper with a “do-over” component, chances are the students will be so busy fretting about the “research” part of that task that I’ll forget to make enough time for the time-management bit.

The truth is, we mostly expect students to suck it up and figure it out when it comes to balancing their time. I suspect a lot of us forget how hard it was when we were younger and greener and did not yet have years of experience juggling essays, teaching, and other home and administrative commitments. We probably also didn’t have to work significant part- or full-time jobs alongside school; I know I benefitted from both modest tuition fees and excellent funding (not to mention a parental home to live in) while I was at the University of Alberta in the mid-1990s. It took me years of panicked last-minute essay writing to learn that there was a better, saner way if only I planned ahead. (I also know I’m only a prof because I have a gift for argumentation and clear first drafts; I would have failed my English classes if it had all been down to managing my time, slogging it out, and editing my work with care.) Although I hate to presume, I suspect I’m not alone among my academic peers in this slightly shameful personal history… so why do we expect our students to be the time management experts we never were, and without any direct instruction, or mentorship, from us?

Thinking seriously about students and time management, I’ve realised I don’t teach it partly because it’s not something that’s ever been on my pedagogical radar. And because it’s not something that’s ever been on that radar, it’s also something I honestly don’t know how to teach. (I also think I’d rather kvetch about my students than imagine I’m part of the problem. Isn’t that always the way?) So I did some sleuthing online this week (modest – this is not extensive research by any means) and discovered that parenting magazines and publications focused on students with disabilities are all over this topic. In a short article prepared for LD OnLine, a website focused on teaching and learning for students with ADHD and other learning disabilities, Patricia Newhall describes Task Analysis as one method for hands-on time management instruction. She writes:

A good place to begin teaching time management is task analysis. It provides one illustration of a skill that many students do not develop intuitively, yet it is an essential element to developing effective time management. …

Task analysis is the process of identifying what needs to get done to finish a given undertaking — whether it is a homework assignment or a long-term project like a research paper. To estimate time with any accuracy, students need to know the steps required to complete a task. Students sometimes do not recognize that a single homework assignment might have three parts. For instance, an assignment to read a chapter and define the vocabulary for a quiz the next day requires students to (a) read, (b) look up words in the dictionary, and (c) identify and remember information likely to be on the quiz. Students unpracticed at task analysis are likely to complete the first and second steps, then assume that the third step will happen on its own. They might do poorly on the quiz even though they believe they did their homework.

I can easily imagine scaling this simple strategy for a university research assignment. Instead of inviting students to create, say, an annotated bibliography, followed by a draft introduction, followed by the full paper, all in discrete parts (an example of what I already do in some classes), I might create a mandatory but ungraded meta-assignment, attached to the research paper, in which students do a task analysis and preliminary timeline for the paper in class – from initial library searching through to editing and proofreading – and then refine it as homework. They might then be required to post their timelines to our class blog, and to check in periodically to see whether or not they are on track with their time management predictions. Finally, along with their research papers, students could hand in a (brief) summary of how they did keeping up with their own schedules, and how they felt about organising their work this way. (I think it’d be particularly useful if they did NOT keep up well at all – failure makes for amazing instruction, especially if a task like this one is framed explicitly as an experiment, and not graded.)

Readership hive mind: have any of you done this, or tasks like this, to instruct students in time management? Do you offer TM mentorship? I’d live to hear your thoughts.

Chilling out now,

Kim