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.

 

Wherein My Son Doesn’t Die

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My Middle-born Boy

My middle-born son, age fifteen, did not die on Wild Hay River last week.

He did not die there but he did go there on a canoe trip with his Scouting group. As they went along, the flotilla wound up in an unforeseen, dangerous flooded section of the river. I wasn’t there but I am told a couple of boys evacuating a nearby canoe accidentally capsized the boat my son, my husband, and another boy, only twelve years old, were in. All three of them were dumped into the river. The current was strong, rushing toward a large spruce log covered in spiky broken branches spanning the river from shore to shore. It was large and dense enough to obscure the view of what was on the other side of it. Beyond and beneath it, there would be more water, and maybe all hell.

In the water, the current divided my husband from the kids. He stood in deep, fast water on one bank, anchoring himself by holding onto slippery tree branches with his cut and bleeding hands, shouting out to the boys not go under the fallen tree but to try to grab onto it if they couldn’t get out of the water. Fighting to stay on his feet, he remained in the water, waiting to see if the boys would be able to stop themselves. If they couldn’t, he would let go and let the river push him after them—a bad but only hope. And that would be that.

The younger boy was closer to the opposite bank and strong and smart enough to grapple out of the water on his own. Our son was further in. He was leaning back against the current, digging into the rocks of the riverbed with his bare feet, his boots long gone. My son’s friends stood on the bank in shock. They watched him being pushed closer to the fallen log—a horrible, unknown. To them, the spiked log might have looked like a barrier in a video game—the kind that ends the level and uses up a life.

I have a vivid imagination. It’s an important part of my trade but it’s also awful. In that imagination, I can see a curly, blond, drenched head pushed along the surface of a rough, glacial river. I can see a little white face with eyes just like my grandfather’s in it, staring up out of the water at jagged spikes.

As the log came within his reach, my son rose up out of the water, moving higher and faster than anyone watching thought was possible. He took hold of the tree’s broken branches and stopped himself from being pushed underneath it. “I’m okay,” he told himself, and hand-over-hand, without the help of anyone he could see, he pulled himself out of the river. Safe, he turned to see his father give him a thumbs up and climb out of the river on the opposite shore.

Earlier this year, I had been invited to the Scouting committee meetings where the trip was planned and I didn’t attend a single one. I wasn’t there asking if the river had been scouted yet this season. I wasn’t there to insist on it or to offer to strap on a can of bear spray and scout it myself. I didn’t do any of those things but I get to keep my son anyway. Do not underestimate my gratitude for the grace extended to parents who mess up.

Sure, many good things will come to my son from this experience. He learned it’s possible for him to rescue himself. The boy who was so unsure of his abilities he didn’t perfect riding a bike until he was eleven has now had the experience of reaching out and saving himself. He also lived through one of those tricky human paradoxes where difficulties placed in our paths (like the fallen tree) are often themselves the ways out of the difficulty. He got more perspective on what he is worth to his father, both when his dad stayed in the water until he was out, and when he saw his father safe on the bank advocating for a difficult portage, for not getting right back into the river even if it meant abandoning the canoes in the woods and reimbursing the Scout group for the loss of them out his government salary. Stuff is nothing, work is nothing, money is nothing. You, boy, are everything.

These are all good lessons—powerful lessons, the kinds of mishap-lessons that find all of us no matter how we live our lives. The world is dangerous and unpredictable for everyone. However, I don’t believe these lessons are the ones Scouting has in mind when it promises kids adventure. It’s a stodgy old Commonwealth institution, actually, one with waivers to sign and plenty of liability insurance. It offers character building in terms of well-organized food drives, and gaining confidence and competence by going into the wild to learn to traverse, navigate, build shelter, find and cook food, and stay safe. It’s about exploration, not exploits—understanding the immense power of the natural world, standing close enough to sense its awesome power, and then taking a respectful, sober step back into the preparations and planning that are our best chance for coming home. We will go back and we’ll do better next time.

Downstream on the Wild Hay River, the canoe my family had been in—the one that had capsized and washed away, upside down, under the fallen tree—was recovered. It was sitting upright and aground on a gravelly bar. In it was the bag containing my husband’s driver’s license, and one of our son’s hiking boots. Gone was my husband’s sloppy Scouter hat I had openly hated. So sloppy–here’s to its passing.

An Interview With the AML

amlEarlier this year, Sistering was awarded Best Novel by the Association for Mormon Letters, an international community that’s been very kind and supportive of my work. They sent one of their best and brightest, Michael Austin, to do an email interview with me–the most Mormon and, interestingly, the least gender role fixated one I’ve ever done. The link to read it is here.

Call Me Binoo

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Binoo, on his island, reads a book

In 2005, Quebecoise author Dominique Jolin’s popular children’s books were adapted for English television as Toopy and Binoo, an animated series headlined by an oversized, chatty mouse and a little white cat who doesn’t speak at all.

2005 was also the year my fourth son was born, delivered without a doctor in a Fort McMurray hospital during an April snowstorm. No one thinks her kids are ordinary but this boy has made an exceptionally strong case for extraordinariness. Ask anyone.

While he was still in his super-toddler form, his little brother, my fifth son was born. Baby brother’s birth wasn’t ordinary either. But instead of being a cavalcade of feats of frontier hardiness, my ultimate son’s birth drama was launched six weeks too early, beginning in an ambulance and ending in a neonatal special care unit.

By the time itty-bitty, needy brother made it safely home, our super-toddler had started identifying with Jolin’s cartoon mouse character, Toopy. I could tell by the way he called me nothing but Binoo and the way my new baby was renamed “Patchy-Patch” after the stuffed toy Binoo fawns over on the show. We all played along. It was hecka cute, cost us nothing, and benefitted us in ways I didn’t recognize during the haze of caring for five children under the age of eleven.

I’m not sure if Jolin wrote Toupie et Binou as a script for toddlers confronting the harsh fact
that mothers are busy people with more to their lives than indulging the whims of one child, no matter how extraordinary. When we make art, we may wind up expressing truth we don’t otherwise perceive. Either way, Toopy and Binoo is a work of genius.

In print, the script of an old-school episode of Toopy and Binoo would read as an uninterrupted monologue by Toopy, mostly spoken in the second person to Binoo. Toopy prattles on in the forefront while in the background Binoo cares for Patchy-Patch, makes small adjustments to keep Toopy’s surroundings safe, and gently redirects and makes suggestions without a word—no pop psych editorializing about social skills or recycling. Binoo plays along, lets Toopy’s imagination wash over him, engaging it, validating it without adding much to it.

This is what the daily life of a toddler at home with his mother (especially with a little sibling) really looks like. They are together in the same world, but each of them wanders within it. There’s constant interaction but its intensity ebbs and flows. The mother’s role in the child’s imaginary world is a supporting one, like Binoo’s role in Toopy’s world. She participates almost by default and, though it may be unwitting, fosters the child’s sense of being “fabulous” by letting him take the lead in play.

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“Looks like Binoo has finished reading his book…”

For parents, there’s a self-serving side to this arrangement. A Toopy-kid—imaginative, caring, happy—is secure enough to loosen that strangle-hold toddlers like to have on their mothers’ attention. In the “Binoo’s Island” episode, Toopy can’t reach Binoo because he’s sitting on a blanket, wearing his glasses, reading a book. And it is not a crisis. “Looks like Binoo is on his very own island,” Toopy narrates, adding only, “Wow!” He then spends the rest of the show goofing around with the premise of a marooned Binoo but actually leaving Binoo the frick alone until Binoo himself decides he’s finished reading his book.

That’s some social modelling I can get behind.

There are lulls in the story where Binoo is not even looking and Toopy is happy just to be near him. Sometimes when a Toopy-kid is talking, a real Binoo-mom keeps looking down at her preemie infant or at her screen full of work and just says, “Uh-huh, uh-huh…” Toopy can deal with that. He knows he’s still “fabulous” even if other things and people need some space to be fabulous too. He knows the dividing of Binoo’s attention won’t last forever. Maybe Toopy and Binoo makes a case for the value of “quantity time” because parents are human, houses are small, everyone is important, and sometimes quantity time is all we want.

My penultimate son told me as much. One afternoon, I had been on Binoo’s Island for quite a while when he came into the bedroom where I was working on a novel and just stood at the foot of the bed. I looked up, greeted him, and asked if he wanted anything. “I want,” he said, “to be near you.”

Done.

 

 

The Association for Mormon Letters Best Novel of 2015

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The AML’s Andrew Hall and me in our kukui nut leis

My career as a novelist is still fairly new but I’ve already been on both the loved up and the snubbed up sides of literary prizes. Awards are a bittersweet fact of life in contemporary publishing. For an essay that says everything I’d like to about literary prizes, I highly recommend this, by poet Kimmy Beach.

Sitting alone, secretly and miserably refreshing Twitter as award long-lists and short-lists are announced without any of our own work on them has got to be a universal experience for writers. It’s certainly been mine. However, I’m grateful to have also stood and bowed my head as winners’ medals have been hung around my neck. For my first novel, it was a weighty pewter disc on a blue ribbon. For my second novel, it was a lei made of kukui nuts. Yes, Sistering was awarded Best Novel of 2015 by the Association for Mormon Letters at their conference in Laie, Hawaii.

In a book-world full of so much good material, it’s hard to stand out. Being part of a group outside the deep, swift mainstream can help. I’m a white Anglophone woman but there’s no P in my WASP. Instead, I am the granddaughter of women who raised their families in post-World War II, post traumatic stressed New Brunswick, both of them seeking new spiritual compasses. Independently of each other, they found Mormonism. It was passed down to me, and while most of my family has let go of my grandmothers’ spiritual legacies, I’ve held onto them. The reasons are personal and religious—which means they don’t have much to do with reason at all. My faith is based in transcendent experiences that began in my childhood and continue today. I don’t usually talk about them in detail, not in public, and especially not on the Internet. But they are real, not the kinds of things I would deny or abandon.

Religious codes that include direction on how to live face criticism. It’s unpleasant but I suppose it does move adherents to keep examining our praxis and to focus on prevailing ideals like love and compassion. Differences of beliefs and lifestyles don’t have to mean discord. For instance, according to my religious beliefs, people shouldn’t be drinking coffee. That’s how I live, but I can still sit at a table and watch anyone drink coffee without feeling the slightest bit of bigotry or enmity between us. This example can be extended to any behaviour contrary to my religious ideals. Regardless of how I believe people should live, my strictest principles are leveled at my own heart. They’re based on the first laws of Christianity which are all about love—love to the point of the losing of the self, which, with typical religious irony, is actually the finding of the self. No matter how differently someone may live from me, I can love them. I do love them. It’s something I’ve learned to do because of my religion rather than in spite of it.20160306_165902

The Association for Mormon Letters “is a nonprofit founded in 1976 to promote quality writing ‘by, for, and about Mormons.’“ It’s not the only organization set up to serve and promote Mormon writing but it is the best fit for quirky Can-lit like mine which tends to get a rough ride in heartwarming “inspirational” fiction circles. The judges were kind enough to call me “one of the most talented” Mormon novelists writing today. The AML are my people. I’d be happy to join them even if they didn’t hand out their awards on the north shore of Oahu.

My husband and I were only out of the country for three and a half days. We left our kids here in Canada, in the care of their oldest brothers. One them is legally an adult, and the other has a driver’s license. Between the two of them, they’re enough man to run our household for a few days—but just a few days.

20160305_154555Outside the Honolulu airport, Hawaii is just as delightful as everyone says it is. Thanks to our Mormon ties we didn’t have to go full-tourist. Friends of ours–fellow Mormon-foreigners, a couple where the wife is South Korean and the husband is Japanese—have been living in Hawaii for years and showed us local favourites like a huge old banyan tree hidden off the side of the road, and a strip-mall restaurant serving massive “Hawaiian-sized” slabs of sushi. On Sunday, we wound up at a church service singing from a hymnal written all in Samoan and witnessing a congregation sending off a woman named Celestial to be a missionary abroad.

Our religious ties were a source of diversity and authenticity. It was our Mormonism—something often thought of as a parochial American backwater—that made this weekend of thoughtful, artful validation of my work possible. It was our Mormonism that spared us a spending frenzy in crowded, urban Waikiki and provided us with a walk through idyllic daily life in small-town Hawaii. It was our Mormonism that gave me something to say as I stood —so low and so small—in the Pacific Ocean, pitching in the currents, my back to continents I’ve never seen, calling out psalms to my husband and the sea and everything above it.

I shouted what, in one form or another, I always shout. “What is man, that thou are mindful of him?”

 

 

Carols, Angels, Babel, and Noona

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M.C. Escher’s “Tower of Babel”

It’s Christmas, a fine time of year to tell a story that begins in church. Recently, I was in a congregation singing “It Came Upon a Midnight Clear.” In the lyrics of the little-known later verses, the ones I had to peek at the hymnal to remember, the song describes the world we live in. It says, “And ever o’er [the world’s] Babel sounds, the blessed angels sing.”

Of course, “Babel” refers to a story early in the Bible about the social catastrophe of the Tower of Babel. Humanity was glitching out and needed its reset button hit–again. But instead of suffering another flood, our language was scrambled. It was the end of the world. Everyone was dry and safe but the world that existed before language was “confounded” was over.

Whether we read the Bible literally or not, the tower story reveals something about ourselves. The fact that a story like this could endure for so long and be so widely spread betrays the profundity of our sadness—maybe even our terror—at the barriers that divide us from each other. The Tower of Babel pricks at our collective longing for a world where “the whole earth [is] of one language, and of one speech.”

With great difficulty, language barriers can be overcome.  They are overcome, all the time. In many ways, this overcoming proves that our higher nature—the one allied with the Christmas carol’s “blessed angels” who see “all the weary world” at once—can rise above the “Babel sounds” of our lower, confused and tribal nature that would rather we huddle in exclusive groups, throwing rocks, registering and monitoring people whose families don’t sound like ours. But separation does not make us happy. On some level, when we’re calm and honest with ourselves, we all know this. It’s one of the oldest lessons there is.

In everyday terms, told without angels or towers, here’s what I mean.

For the past two semesters, my Chinese class partner and school bff has been a 27-year-old, world-travelling, polyglot, sweetie-pie, veteran of the South Korean navy. One morning, I jokingly referred to myself as his noona (Korean for a boy’s older sister) and the rest is history. Noona, noona, noona~~~

A few weeks ago, my husband and I were having lunch with him. English is the third of the five languages he knows and sometimes, understandably, his talk gets tangled. He stopped himself mid-sentence with a bitter, “Oh, my English!” Actually, it wasn’t so bad. I rephrased the complicated statement I assumed he’d been trying to make and repeated it to him. He didn’t reply with his voice. Instead, he smiled, put one hand over his heart, and extended his other hand across the table, toward me. I recognized it as the universal sign for, “This person knows my heart.” It was beautiful. I will remember what he looked like, sitting there with us, for as long as I have a mind that remembers anything.

Ask anyone: overcoming a language barrier takes more than flashcards and worksheets. Memorization and practice can train us to function but they won’t boost us all the way over the wall to where people really live. True understanding of anyone from outside (or, heck, from inside) our language group requires bringing that hand to the heart, sharing and connecting in sublime ways beyond vocabulary. Any barrier is best overcome by acts of love and brotherhood—noona-hood.

All of this is what I want to say when I’m asked why I am slaying myself to learn a new language. The more people we can talk to, the more people we can love. And when we put ourselves in a setting where our native language is not the dominant one, we learn to pay more attention to what people mean rather than just what they say. When we can only translate part of a communication through language alone, we learn to tune in to other cues—obvious ones we can observe with our senses like gestures, facial expressions, and non-verbal vocalizations, as well as cues we sense with our empathy, our feelings, with our spirits.

Why learn another language? Do it to for the resume, sure. But also, do it for love. How corny is that? Corny enough to be a Christmas song, one that looks forward to the day when “the whole world send back the song, which now the angels sing.”

 

 

This Is What a Good Day Looks Like

I emerge from 准备考试 (where I’m all about midterms in a class of super-smart people all clutching raw scores of over 90% which will eventually be hammered into a horrifying curve) to share this post from the Literary Press Group’s All-Lit-Up blog. It’s about both of my books.

Go ahead and read it here.

The author, Leonicka Valcius, compares my novels’ treatments of themes of family, love, and death. She even picks a favourite of the two books–and it’s not the same as mine. The piece is long and thoughtful and I enjoyed it immensely, reading as my bus rolled along Jasper Avenue, away from the restaurant where I’d had lunch with my tall, fancy husband and, for the first time this month, we hadn’t been asked if we wanted separate bills.

I got home and made dinner for my family, almost from scratch. And in the evening, whilst watching Chinese TV on the exercise bike, I understood not only a phrase but its cheeky play on words that doesn’t translate into English–because no matter what grade I end up with I am learning something.

That’s a good day.