Unsolicited Advice on Talking Dementia

brainAs a staff member, volunteer, friend, and family member, I’ve spent a lot of time in seniors’ care homes. I like being there, but it is a challenging environment. Of all the struggles people who need to go into this kind of care have, the worst may be dementia. In the homes I’ve visited and worked in, I’ve never seen anyone treat a dementia patient unkindly, but I have noticed a few well-meant sorts of comments that backfire and cause them anxiety. Inspired by my sister-in-law’s recent blogpost on how to talk to deaf people (yes, go read it), here are a few tips on how to talk to people with moderate dementia.

Laugh and have fun, but don’t make jokes that rely on sarcasm or any other kind of communication not meant in an absolutely literal sense. It’s confusing and not worth it. The aides at my family member’s care home have a running joke about getting in and out of the residents’ suites through secret passages. Cute, until residents ask their families to bring in crow bars so they can tear up the carpet and find the passageway.

Don’t admire their possessions too enthusiastically, even if it’s only to make conversation or be polite. Dementia can frame compliments as conspiracies. The patient may initially seem pleased but the more they dwell on the compliment, the more they may begin to suspect someone might be out to take their nice things for themselves. This gets complicated, especially if they hide treasured objects in safe places, forget they’ve done it, and then the stuff may as well have been stolen.

On the other hand, they may be so pleased with a compliment that they offer to give away an object someone has admired. These offers must be refused. Most care homes have policies against staff accepting residents’ possessions as gifts and with good reason. As another one of my sisters-in-law says, people with dementia remember concrete things better than they remember abstract conversations. They may forget that they offered something and be distressed when they find it’s missing and can’t remember how they came to part with it. So leave everything where it is. Don’t even borrow anything. Leave it.

Wait rather than finishing their sentences. Conversation is hard when familiar words just won’t come. Speaking a first language becomes more like speaking a second language, where if everything would slow down a little, the dementia patient would do much better. Be clear and slow and specific. Pause even if it means sitting through silences, waiting. While waiting for the patient to find the words, don’t say much more than a few words of encouragement, like, “Take your time. It’s okay.”

Stay positive. This sounds outrageously trite but being in the moderate stages of dementia, when patients understand their minds are slipping but can’t do anything to stop it, is depressing for everyone especially the patient. This depression feeds off the frustration and grief of other people. When the patient is in a good mood–even if it’s a bit wacky, even if we’re not in a good mood ourselves–go with it. Be delighted in their happiness and relieved their clouds have lifted. Sometimes, they even want to laugh about the strange things they’ve said or done. Keeping laughing with them. Laughing together makes things feel normal again.

But we won’t always be able to stay positive. If we felt no pain or grief at the changes in our loved ones, we’d be less human. None of us has perfect control of powerful feelings like these and forgiving ourselves for our lapses is part of the lifestyle of someone helping in the care of a dementia patient.

Don’t expect too much late at night. Energy ebbs and flows during the day. By afternoon nap time and late in the evening, it’s spent. Being exhausted makes it impossible to maintain the peak presence of mind a dementia patient may be able to muster in morning and at dinnertime. Personally, as much as possible, I insist on morning time slots for my loved one’s appointments so she can be at her best.

Listen to their concerns. Their concerns might be unfounded in reality [see the secret passageway]. They might be more like obsessions, repeated over and over again. Listen anyway. Only force questions on them if the false concerns seem to be upsetting them or could start rumors that pose a threat to other people. When questioning, try not to argue. Act like a careful, well-mannered lawyer leading a witness to give evidence. Provide their story with a map of reality to fit into, then stand back  a little as they find their own way to make it fit.

A friend contacted me after I wrote this to share her experiences dealing with a loved one with dementia who kept asking after family members who had died, expecting them to still be around. To avoid devastating patients with the “news” of deaths, my friend recommends just redirecting them with, “They’ll be here later.” If you’re a spiritual person, it’s true, in its way.

In cases where concerns deal with what patients might have done to bring dementia on themselves, assure them it’s not their fault. Diseases like alcoholism and syphilis are indeed connected to both patient lifestyles and dementia. But most dementia patients don’t have those kinds of risk factors. Unfortunately, well-meaning tips for younger people about avoiding dementia–stuff about reading, learning a second language, doing Sudoku–have been taken by some very dim and silly people who don’t understand the difference between correlation and causation to mean that dementia patients must have been mentally inactive and lazy during their younger years, and that people who don’t get dementia are better people than those who do. This is not at all true. It’s offensive and shameful when people without dementia say it, and heartbreaking when people with dementia say it. Let’s all agree to never say it again.

 

A Bunch of Bad Reasons for Not Writing

blindmansbluffUnlikely as it is, I have done my most intense and productive writing during summer months–except for that one summer when the irises of my eyes got inflamed and I temporarily lost a good portion of my vision for about a month and could not write at all (well, hardly at all). The inflammation may or may not have been the result of too much time spent looking at an old, fuzzy laptop screen, writing.

In light of this–and many, many other things–I am probably not someone to model oneself after, but if you’re out on the interwebs right now looking for a pep-talk to keep you writing through the summer, consider this it.

A writing atmosphere of bad, cozy weather is one of the stereotypes repeated on “Memes for Writers” Pinterest boards where the aesthetic is all sweaters, cats, and hot drinks. Setting up any kind of external setting or internal personality or background as essential for writing is counter-productive, usually elitist, and simply irritating for writers interested in actually finishing a writing project. So enough of that. No more passwords or potions, no rites or effete orthodoxies, no self-indulgent mythologies about who writers ought to be. No more talking about writing in a way that draws only the ‘right’ kinds of people into thinking of themselves as writers, trusting themselves as writers, and braving the risks needed to publish. Enough. Ignore it.

 

You can write even if:

  • You weren’t a bookish child. Don’t worry if you can’t stare into the middle distance, all dreamy, and claim your best friends growing up were books. If your best friends were actually people (and I’ll bet that, for just about everyone, they were) you are better off in every way, including as a writer.
  • You aren’t a voracious reader now. It’s true writers have to read in order to learn who we are and how to do what we do. It’s true writers owe everything to readers. Thanks for reading this right now. But you don’t always have to have someone else’s book on hand in order to have something of your own to write.
  • You have kids. Writing will be much more difficult and distracted with constant kids in your life. You knew that going into this. But it can be done. Virginia Woolf was wrong about this one. Trust Shirley Jackson, and Ursula LeGuin, and Zadie Smith, and hundreds of other people writing in the teeth of their offsprings’ childhoods.
  • You don’t drink too much coffee. It’s just short term gain.
  • You don’t drink too much alcohol. It’s just long term pain.
  • You aren’t a native speaker of the language in which you want to write. In fact, newness to a language might be an asset (I’m staking my MA thesis on it, so I sure hope so). No one experiments with a language in original ways, no one wrings new things out of the same old lexicon like someone who has learned it as a second language and approaches it free from the cliches and conventions native speakers have been bound by since we were babies.
  • You don’t have an MFA in creative writing. Whatever your education or experience is, it is part of your training as a writer and the weirder, less prescribed it is, the better it is, in my opinion.
  • You’re allergic to cats.
  • You get along with your family. In fact, make sure you write something if you get along with your family. The literary world needs more families who find conflict in things other than breaking each other’s hearts.

There it is. No excuses, no exclusions. All the best this summer!

Me, Writing for the New Left Review

newleftreview

My academic gig is also a writing gig. As part of our educations and contributions to our fields and universities, we all write and publish critical analyses of literature and culture. So here I go. My first academic article was published today. I’m a big admirer of the publication it’s in–a London-based journal called the New Left Review which is important to many people who study what I study. Very pleased.

Big thanks to my husby for the Swedish last name I took from him easing some of the awkwardness out of my article’s critique of a Swedish institution and the tacit awards criteria for the Nobel Prize for Literature. In an article that is definitely not about Bob Dylan, I explore whether the prize is still bound up in Eurocentric ethos. Guess what I found…

 

The Idiom is Actually “Raising Children”

sambuchhauntedhouse

From a sidewalk in Galati, Romania, where one of my adult sons lives

I think I understand why an article titled “Quit Doing These 8 Things for Your Teen This Year if You Want to Raise an Adult” keeps appearing in my Facebook newsfeed this week. It’s about a parent’s choice to refuse to do things like waking her kids up in the morning, packing their lunches, dashing forgotten items to school, helping with projects, and other things most teenagers—people the same age our great-great grandparents were when they were getting married and raising kids and crops of their own—could probably handle without adult intervention. I get it. Kids can become a make-work project, getting them to acquire competence is an important part of parenting, it isn’t easy, it isn’t comfortable, yes, yes, yes.

I understand the message but it is badly presented in this article. It’s not just that the writer’s lack of insight into her own ableism is downright offensive. It’s not just that teenagers grow at different rates, including at rates complicated by developmental delays. Some of them aren’t neurotypical, or are struggling with mood or anxiety disorders that affect their abilities to focus, remember details, and harness the ole get-up-and-go. The article’s bad presentation is all of this and more.

I’m slightly farther ahead in the parenting lifecycle than the author of the article. I have two children who have become adults in spite of me waking them up and making their lunches every day until they graduated from high school. Now that they’re out in the world—one of them in the third year of a computing science degree at a large research university, and the other across the Atlantic Ocean serving as a volunteer in a rough industrial town—one of the things I don’t worry about is whether they will get up in the morning now that I’m not waking them myself. They do. They just do.

No, what I do worry about are the same things I’ve always worried about. I worry about whether they’ll be kind to people, generous with their time and energy. I worry about whether they’ll help people out and offer second chances when dumb mistakes are made, even if those mistakes have bothered them. I worry about them being able to resist petty power struggles, and being prepared to inconvenience themselves in the interest of making life better for other people, particularly people who are smaller and weaker than them. I hope they remember me and their father inconveniencing ourselves to care for them when they were young and weak. To raise a person who doesn’t remember being treated like this is to risk raising someone who doesn’t know to treat other people like this. It’s priming someone to be a problem partner, a problem parent, a problem caregiver for their own parents when the time comes for us to grow old, losing track of our time and possessions, needing someone to patiently and helpfully oversee our daily activities. The tables that we’re sitting at with our children at this early stage in our family lives—they turn.

There’s more still. Not all parents are equally well-equipped for parenting. Some of us work, run businesses, parent alone, are simultaneously caring for older generations, cope with illnesses of our own, spend years in pregnancy and breastfeeding modes that make us less than constantly available to our kids. Maybe what I’m saying when I walk into my fifteen-year-old’s bedroom while it’s still dark and pat him on the arm until he pats my hand back, telling me without a word that he’s awake, isn’t that he’s cute and I want him to stay my baby forever. Maybe I’m saying I realize I never spent an entire week planning and executing a lavish birthday party for him, so I hope he can accept my love in these small installments offered in silence every morning. Maybe what I was saying when I chucked that daily granola bar and sandwich into a brown bag for my eighteen-year-old is how sorry I am that I was too busy with his baby brothers to ever be a parent volunteer in his classroom while he was at school, so I hope he’ll accept rations of food I paid for and assembled with my own hands instead.

It’s trite to spell it out—not to mention terribly ironic to have to write it in response to an article that repeatedly condemns “judging” among parents–but clearly, parents can only offer their kids resources they actually have. Even then, those resources—time, money, talents, health and wellness–have to be tailored to meet the needs and characters of individual kids, rather than being applied as meme-ish rules of thumb pasted under bossy headlines. We don’t, contrary to what the article’s title says “raise an adult.” The idiom is actually that we raise children. Unless kids die young, they will become adults. There’s nothing their parents can do to stop that and there’s no need to quit anything but worrying about it. What’s more important than whether they’ll be adults is what kinds of adult behaviours we’re modelling for them.

Moose-hide, Pocahontas, and Other Things That Won’t Make You Indigenous

canoeladyI was born and spent my early childhood in northern boreal towns in western Canada—Prince George, Prince Albert, St. Paul, High Level—remote, freezing places bristling (if you’ll forgive the Can-lit cliché) with black spruce and lodge pole pine. These towns were the centres closest to large Indigenous communities my father worked with as part of the federal government, and later as an employee of First Nation governments themselves. My uncle, my father’s older brother, worked in the same field, in the same communities. As a little girl, I wasn’t sure exactly what my personal connection was to the local reserves or to the people who lived there. They were my father’s colleagues, his hockey and softball teammates, and often, as politics would allow, his friends. As a four-year-old, I didn’t understand anything about anything and ignorantly assumed from my sickly pale features—a genetic throwback to my parents’ Irish ancestors–that I probably wasn’t Indigenous myself. But I wondered about the rest of my family. I was a little girl taking the only surroundings I had ever known for granted, and I suspected my father and my uncle might be Indigenous.

Whatever they were, their connections to the communities seemed profound. Dad’s Indigenous colleagues were generous and he was given gifts of art and crafts like the hand-made beaded moose-hide jacket and gloves that hung in our storage room. My father treasured them, but felt unqualified to wear them in public, wary of “pretending.” Still, these articles were a part of our home. When we’d been away from home for a few days and came back no longer habituated to the smell of the house, I could smell my father’s moose-hide clothing from the front door.

Despite their time and goodwill, their gifts and service, my father and his brother were not Indigenous. Eventually, I figured this out without having to ask. Our family history includes rumors of a grandmother in New Brunswick in the 1800s—a midwife and accomplished canoeist—who was descended from Indigenous people. But I’ve researched the line and haven’t been able to substantiate the story. It remains conjecture—fascinating but certainly not something anyone in my family has ever staked anything on.

My husband’s family history is more illustrious and better researched. It unfairly benefits from romantic exceptions to old racist American policies. He and our sons are among the thousands of North Americans who can trace their ancestry to Pocahontas and her English tobacco magnate husband. It’s not a fairy tale–unlike the ridiculous gossip spread by John Smith and embellished and repeated by Disney itself. While I have not seen the Disney film (our twenty-two year boycott of the movie is going strong) I have seen the genealogy—name by name–that links my children to the most famous Indigenous woman on the planet. Even so, I wouldn’t presume to try to get my kids recognized as status Indigenous people so they could enjoy benefits meant to curb the marginalization of Indigenous communities while simultaneously enjoying the privileges of moving through Canadian society free from racial marginalization. Of course not.

Claims of aboriginality have become an issue in the world of Canadian literature lately as one of our celebrity writers has been challenged to provide clarity and credibility for branding himself as part of Canada’s Indigenous community. The writer in question is Joseph Boyden—a man who has recently also made a howling mess of a university’s labour tribunal against a male creative writing professor, leading a chorus of sexual harassment victim-blaming. In the latest controversy, the best Boyden has come up with in answering questions about his heritage is to make vague references to the same kinds of indigenous connections I have—murky ones on the east coast from generations ago—ones that in no way give people like us the right to presume to speak for (or, as one Anishinaabe/Metis writer has said, to speak over) Indigenous communities. Boyden has admitted that his roots are mostly “Celtic” but he hasn’t backed down from identifying as Indigenous.

Before all of this, I went to hear Boyden speak. It was in a large auditorium to a sold-out crowd. He read from The Orenda, from a chapter narrated in the first person by an Indigenous character. I remember him speaking the words in an accent most Canadians would identify as “Native.” It’s too much.

Boyden has said little in his defense but of what he has said, one statement keeps coming back to me. He said, “A small part of me is Indigenous but it’s a big part of who I am.” This may be something someone like my father could rationalize saying himself—only someone like my father would understand that it’s wrong.

Oh So Mature Student

artsowl

I’ve been in and out of this door since the 1990s but hadn’t noticed this owl reading a book carved over the door until my husby pointed it out this Fall.

My first semester of graduate school has just ended. It was my first full-time gig outside our house since my kids were born. With school, my kids, and continued work on my career as a novelist, my commitments amounted to more than full-time. This would probably be the case for anyone who’s been alive as long as I have–who’s had this many years to complicate a life. Still, if you’re an old person (by which I mean, over 28) thinking about going back to school, I say take the time and do it. You can do it, especially if you heed these handy tips:

  • On campus, never use the bathrooms on the main floors. They are “oversubscribed.” The clean, peaceful third floor bathrooms are worth the hike and will provide all the privacy we need for using the facilities, or maybe even a quick cry. Which reminds me…
  • Get a good backpack and carry some Kleenex in it. You will be asked for it. In fact…
  • If a newly-minted grownup, a student, is lost on campus, desperately wishing their mom was around, and happens to see you walking along like a personal gift from a benevolent cosmos, they will prefer you over a peer as someone to stop to ask for directions and to help them generally feel less alone and sad. This is not a time to get snarky about “emotional labour.” It’s a time to be kind and patient and cultivate a rough knowledge of the whereabouts of those obscure computing science labs. But remember…
  • As far as educational achievement goes, the young students are our peers. It is completely inappropriate to try to assert dominance over them. If they don’t revert to treating us like they would their mom’s friends, great. Go with it. By and large, they are lovely humans and it is an honor to have any significance in their lives. However…
  • Go ahead and have high expectations of those young classmates. For a student, doing 80% of a perfect job will still earn them a decent final score on their schoolwork. For people who’ve been in the workforce, we know doing 80% of a perfect job could getcha fired. It’ll do the young folks good for you to insist on bringing that esoteric bibliography format up to code before you pass in the group project. And in the same vein…
  • As far as educational achievement goes, our professors, no matter what their ages, are not our peers. We must present ourselves to them every bit as humbly, as open-mindedly as the young students do. No one likes an old student who comes to class to act like she and the prof are out for coffee with a bunch of annoying kids tagging along—not the other students and not the professors either. As we show respect for our professors and the work they did obtaining academic expertise while we were doing other things, they will in turn show respect for us and those “other things” we were doing to contribute the world outside their expertise. Showing off and shutting people down are not how this respect is earned. And anyways…
  • Showing off would only set us up to look even stupider than necessary when the moments come for us to make dumb mistakes as school. Everyone messes up sometimes, especially people re-adapting to an educational system which had just about passed them by. The quicker and more good-humoredly we admit, own, and laugh off our mistakes, the more likely we are for other people to let them go too and maybe even to look out for us next time. Frankly, there is less social and academic peril in letting people think you’re a tiny bit stupider than you are than in letting them think you’re much, much smarter than you are.
  • Go ahead and be cool. As far as I can tell, there are two kinds of cool: selfish cool and selfless cool. When I was young, I admired the heck out of selfless cool people (I’m looking at you, Angie Dahl) and wished I knew how they did it. I think both kinds of cool include elements of not being overly anxious about taking social risks—even little risks like talking to strangers or to a room full of people—and taking those risks with ease and confidence. In cases of selfish coolness, this confidence is maintained by pre-emptively lashing out with cruel humor, abuse, or the shunning of those who would call into question the coolness. In selfless coolness, this confidence is maintained with warmth, sincere praise, and believing people are good and wish us the best until they actually do. The ease with which those kinds of feelings come is the best thing about being an old broad at school. I spend all day in a place where everybody is brilliant, beautiful, and loveable. School has always been this way, and now I am finally old enough to know.