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,
(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.