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!

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.

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.

Eulogy for LC and the USA

cohenmonkThe morning the results of the 2016 United States election were confirmed, I cried. I am not an American but, like all of us, I am affected by its foreign and domestic policies. And I do ache with empathy for people whose vilification by trumpism has now been wrongly—evilly—legitimated. I reject that legitimization. It is sickening and terrifying.

Later the same week, when Canadian poet Leonard Cohen’s death was confirmed, I cried again. I didn’t know him personally but, like many of us, I am affected by his work. I posted an American magazine’s eulogy of Cohen on my Facebook feed along with half of a stanza of a poem, a song, I’ve known from memory since I was sixteen when my dad would play it in the car on our way home from late night shifts at the doomed sandwich shop we owned at the time.

The rain falls down on last year’s man,

an hour has gone by and he has not moved his hand.

But everything will happen if he only gives the word.

The lovers will rise up and the mountains touch the ground…

Cohen’s “Last Year’s Man” is one of his prophetic works. I’ve always felt it was, even when I was a young girl. I’d listen to verses like

I met a lady, she was playing

With her soldiers in the dark.

One by one she had to tell them

that her name was Joan of Arc…

and I’d feel like they were important. I didn’t foresee an election where no amount of reasons to prefer a flawed but qualified woman over a car wreck of a man could convince people to follow her. Cohen wouldn’t have foreseen it either, but he could still write poetry about it way back in 1971.

In the same song he could write about a declining world power, the end of its moral authority, with poignancy and pathos, with just

And the corners of the blueprint are ruined since they rolled

far past the stems of thumbtacks

that still throw shadows on the wood.

I took Cohen’s death hard not because as a white person from outside the country I was exercising my luxury of being able to flip the channel on my grief machine as the mood hits me. I do have that unfair luxury but it wasn’t operating for me in this instance—not in the way it may seem. I publicly mourn Leonard Cohen because enfolded within my feelings for his death are my feelings about the 2016 US election. Cohen’s work—especially the stanza I posted in public—speaks to my grief and frustration as someone caught powerless in this moment of history.

Cohen was a spiritual person. He called out hypocrisy in people who claimed to be the same—who mouthed piety while indulging in hate, prejudice, greed, and violence. He pointed out the true character of religion is not about cupcakes and work ethics but about loving the world in spite of suffering and sacrifice—about reading “from pleasant Bibles that are bound in blood and skin.” Paradoxes are inevitable and vital. Hypocrisy is not. Consider this verse from “Suzanne.”

And Jesus was a sailor when he walked upon the water

And he spent a long time watching from his lonely wooden tower

And when he knew for certain only drowning men could see him

He said, “All men will be sailors then, until the sea shall free them.”

This is the theme I saw in the verse I posted from “Last Year’s Man.” No one compares to god. Even when he appears to be still, or impotent, just watching–none of us compares. And this world is to be transcended and overcome. We were made to rise out of it, to be free of it even though to do so is a miracle. We have two faculties for transcendence: suffering and love. Combined together, these faculties become hope. In revisiting Cohen’s work the week he died, I have connected with my grief for American society, and also with the beginnings of my hope for it–for all of us.

And so, we sail on.

 

Wherein My Son Doesn’t Die

nathanbasin

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.