therestlessnest

where life's not empty, it's restless.

Archive for the tag “dementia”

Being Fragile

IMG_1380Human beings are fragile, though we prefer not to dwell on this. We prefer to celebrate our resilience, our strength, our endurance. But in the end, we are fragile, because we are mortal. Some living things—for example, the bristlecone pines of Nevada’s Great Basin—can live for a thousand years. Not us. Not a single one of us. Not ever. Unknown

Mortality is what Atul Gawande wrestles with in his book, Being Mortal. Gawande is a surgeon, and he is trained to fix broken humans so they can go back to being strong and resilient and busy. But when his own father was given a diagnosis that both father and son knew was incurable, Gawande realized how ill-prepared he and his parents—both also doctors—were to accept what medicine can’t do to fix things. And he realized he and his family weren’t alone in this. He began to look around his world, the world of surgery, oncology, all kinds of high-tech solutions to human fragility. He started asking hard questions about how and why doctors so often aggressively treat terminally ill patients—frequently causing great distress and discomfort—and why they so rarely ask questions about what their patients might actually want from life in their final years, days or months. He sought out people who were trying to do things differently, and learned from them how to ask the right questions. A piano teacher with, at most, weeks to live, told him what she most wanted was to leave the hospital, go home, and be given just enough pain relief to enable her to teach as long as she could. She got it, and in her last days, her students played a final recital for her in her house.

Gawande also takes a long look at what life is like in America for people who may still have years to live, but who have reached that most fragile phase of all: old age. He questions whether safety—the stated priority of most adult children, when they look for a place for their parents to live—should really be our number-one concern in housing the elderly. What about joy? Meaning? The dignity of privacy; the pleasures of community? Gawande tells the story of how one assisted-living residence was transformed when dogs, cats and 100 parakeets were brought in. He also looks at programs to help seniors stay in their homes by zeroing in on small things: finding someone nearby they can call to change a lightbulb, or take them grocery shopping.

It may sound like a tough read, and at times it is. I wish he had wrestled more with the emotional and ethical challenges posed by Alzheimer’s disease and other dementias. But Being Mortal is ultimately an uplifting book because Gawande seeks and finds examples of how we can do better at facing mortality: our own, and that of the people we love. His focus is on the medical end of the conversation, because, he contends, we have come to view old age and death as medical challenges. He wishes this was not the case, but given that it is, he wants us to think about ways to steer the conversation from what the intensive care unit or nursing home has to offer to what human beings nearing the end of life really need and want.

Gawande writes that he “never expected that among the most meaningful experiences I’d have as a doctor—and, really, as a human being—would come from helping others deal with what medicine cannot do as well as what it can.”

After reading Being Mortal, I felt less fragile. Less fearful. There’s something about facing fear head-on that does that, especially when you’ve got a good guidebook. 

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Buy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts February 11, 2015. Six Wednesday nights. Non-credit = all inspiration, no stress!

 Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:45 a.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area. Podcasts available too.

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The Writers Are Coming

    DSC00865When I opened this week’s Sunday Seattle Times, the first thing I saw was a big color ad for commemorative Super Bowl 48 bookends. Fully sculpted, cold-cast bronze, showing “Seahawks players in action!” Not available in stores! And only $49.99, payable in two easy installments!

I looked up “cold-cast bronze” so you won’t have to. It means the sculpture is made from a resin mixed with powdered bronze, which gives it a surface, quote, “similar to traditionally cast bronze, at a fraction of the cost.” Just FYI.

But what struck me about the ad was this: why bookends? In what way do books relate to football? Why not just make a Seahawks Super Bowl cold-cast bronze statue to place on the coffee table in front of the flat-screen TV, so you can see it every time you fire up ESPN?

Maybe the Bradford Exchange Collectibles people heard about one of Seattle’s other claims to fame, which is that we are one of the most literate cities in the country. The second, after Washington DC, for the fourth year in a row. The Central Connecticut State University study tracks six factors: number of bookstores, educational attainment, Internet resources, library resources, periodical publishing resources, and newspaper circulation.

Or maybe the cold-cast bronze makers got wind of Seattle author Ryan Boudinot’s campaign to get the United Nations to declare Seattle an official UNESCO City of Literature. A part of UNESCO’s Creative Cities program, such a designation would not only acknowledge what we all know—Seattleites love books—but help us share that news with the world. And doesn’t “UNESCO City of Literature” sound much cooler than second most literate city?

Which brings me to an event happening this week, in downtown Seattle. It’s what you might call the Super Bowl of literary conferences. Known as AWP for short, the 2014 conference of the Association of Writers and Writing Programs will bring some twelve thousand people and 650 exhibitors—literary magazines, small and mid-sized presses, MFA programs, writer’s retreats, organizations, booksellers—to the Washington State Convention Center. So if you’re walking downtown and you see people with big convention badges, they could be poets or novelists or professors or publishers. You might see some of our local authors—Tess Gallagher, Sherman Alexie, David Guterson. Or legendary writers from further afield: Ursula K. LeGuin, Annie Proulx, Gary Snyder, Sharon Olds. I could go on. At great length. But I’ve got to save a little mojo, because I plan on attending as much of AWP as I can. There are 550 events to choose from, and that doesn’t even count the off-site readings, at bookstores, bars, museums and theatres all over town.

So. Seattle. Order those Super Bowl bookends—or hey, build or sculpt your own—and then go out and buy some books to put between them. Or start writing a book. Or take a writing class, or go to a reading.

Many of the AWP off-site readings are open to the public. I’m taking part in one of them myself, Thursday night at the Frye Art Museum. I love that I live in a city where this is possible. Not too many of us get to actually play NFL football. But we can all be on Seattle’s UNESCO-worthy team of literature-lovers.

Calendar Notes: I’ll be reading from my memoir, Her Beautiful Brain (forthcoming this fall from She Writes Press) as part of Witnessing Dementiaan AWP off-site event at Seattle’s Frye Art Museum at 6:30 pm on Thursday, February 27. Also on the program: Tess Gallagher, Holly Hughes and Esther Helfgott. On March 16 at 3pm, in celebration of the publication of an anthology called Into the Storm: Journeys with Alzheimer’s (edited by Collin Tong), I’ll be reading along with some of the other authors at Elliott Bay Bookstore.

 

Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:45 a.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area.  Podcasts available.

Here’s nest artist Kim Groff-Harrington’s website.

 

Holiday Dementia

 It’s winter. A butterfly just fluttered past my window. Or so I thought, for one illogical instant, until I realized it was a yellow leaf. Just a little moment of delightful poetry—or creeping dementia. That’s the kind of gallows humor that goes through my mind on any given morning. And I know I’m not alone. A recent poll showed that two thirds of the population of the United States has some personal connection—via a family member, friend or workmate—with Alzheimer’s disease or other memory loss problems. Alzheimer’s is, and has been for many years, our most feared disease, and rightly so. And this time of year, as many of us see family members we haven’t seen in a while, that fear runs high.

Maybe you were one of the millions of Americans who noticed, this Thanksgiving Day, that your grandmother or your mother was off her game. Forgot to time the turkey; put salt in the pumpkin pie. Maybe you’d been warned, before you got home, that your beloved uncle wasn’t quite himself anymore. That his wife, your aunt, was tense and tired. Maybe you’re currently rethinking your commitment to see them all again at Christmas or Hanukah. Maybe, like me, you’re missing the one who’s already gone: in my case, my mother, who died before her time of an illness I once thought only very old people got.

Alzheimer’s disease and other forms of dementia can cast a long shadow over the holidays. I believe it’s natural and healthy to feel all kinds of ways about it: surprised, sad, angry, uncomfortable. Many people find themselves fighting (or giving in) to the urge to flee. Disbelief is common too: “Mom is fine, she’s just stressed out!”

One of the toughest truths about Alzheimer’s is that, whether it’s short and steep or long and gradual, it is an inexorable, unstoppable downward path. We Americans like to fix things. We have a very hard time accepting that the best we can do, medically, for a person with Alzheimer’s is offer a pill that might—key word, might—slow the progression of the illness.

But there are many things we can do to make it more bearable: for ourselves and for the person we love who is living with this illness.

First, and this is really my best and only holiday advice: find joy in the moment, however unmoored from reality that moment seems to be. Do not ask a person with Alzheimer’s to “try” to remember what day it is, why he’s there, whose house it is, whose kids these are and why it’s not time to go home yet. Do not correct or scold or worry or be embarrassed. Encourage the telling and retelling of old family stories: what better time to dwell in the past than during the holidays? Get out the oldest photo albums. Put on music from many decades ago. Serve old-fashioned, familiar foods, but only the ones everyone actually likes.

Second, after it’s over: you’re home now, you’re busy, you feel utterly helpless about your loved one’s dementia. What can you do? Here’s what: volunteer for research. Alzheimer’s studies need control subjects too. They need people with healthy brains who are willing to take memory tests, be scanned, give blood and cerebrospinal fluid for the cause. A few hours out of your life, a tablespoon or two of fluid extracted, and with one spinal tap you could be contributing to as many as 50 different studies.

You can also advocate for the cause. President Obama signed into law the National Alzheimer’s Project Act in 2010. Now we need to get it funded. We need to persuade lawmakers that as baby boomers age, the cost of NOT finding ways to prevent and treat Alzheimer’s disease will be crushing.

When someone you care about is suffering, doing something is the best way to treat your own symptoms: your anger, frustration, fear. It won’t be a cure-all, but it’ll help. Trust me. I’ve been there. Contact the Alzheimer’s Association: they’ll get you started.

I loved teaching Intro to Memoir Writing so much I’m teaching it again this winter at SCCC. Starts Jan 2. Six Wednesday nights. 

Our films, The Church on Dauphine Street, 30 Frames a Second: The WTO in Seattle and Quick Brown Fox: an Alzheimer’s Story are now available on Hulu, Amazon and other digital sites.

Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:50 a.m., Thursdays at 4:54 p.m. and Fridays at 4:55 p.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area.  Podcasts available.

Here’s nest artist Kim Groff-Harrington’s website.

Grown-up Brain

Sitting in my email inbox is a message with this subject line: “Five memory-killing foods you should NEVER eat!” But does this email tell me what they are? No, of course not, because the spammer who sent it wants me to click on their hack-trap  link. The email is from someone named “Alzheimer Cure,” whose address is gaynell at brendy dot lookharbor dot info. Hmmmm.

Clearly, Gaynell, you have not heard the good news about the middle-aged brain. Turns out I am not a), so dumb and desperate I’m going to open your email or b), on some grim downward slide that started around 25, when my brain peaked, and will continue until I keel over.

Clearly, Mr. or Ms. Gaynell at Brendy dot Lookharbor, you have not read the book I just read: The Secret Life of the Grown-up Brain, by New York Times science editor Barbara Strauch.

This is a book is packed with good news: the kind of news that tends to slip under the radar because it is so counter-cultural and confusing to our youth-worshipping media world. Strauch’s mission is to bring us up to date on the brain research of the past few decades, nearly all of which refutes the prevailing cultural brain myth of our time: namely, that young brains work better.

She does not deny the specific ways in which youthful brains have it over middle-aged or older brains, which mostly have to do with speed and short-term recall. But she paints a fascinating picture of the ways in which our brains not only compensate for those age-related changes, but in most cases, vastly over-compensate. I am simplifying 200 pages of great science writing here, but the main point is this: what we lose in speed and recall we more than make up for in judgment, which builds up over decades of perceiving, discerning, weighing, deciding. Wisdom: that’s the old-fashioned word for this.

And even as those of us over 45 lament our inability to instantly recall names or keyboard shortcuts, we get a lot of mileage out of our accrued wisdom. But we rarely acknowledge this, even to ourselves. All our lives have been spent in the era of youth-worship, of middle-aged crises, of the acceptance of inevitable brain deterioration. Experience, mastery, knowledge—those are not words we’ve been conditioned to value, not in the same way we value words like innovation, genius and start-up.

About that notion of brain deterioration: recent research shows not only do we not lose large numbers of neurons over time, our brains are actually capable of making new neurons.  Or, as Strauch puts it, “scientists now believe that the brain does not undergo complete disintegration as we age.” Not only that, but—and here, perhaps, our obsession with youth should get a nod—researchers can now clearly see the connections between exercise, nutrition, cognitive engagement and brain health. Especially exercise. Which means: if you want your wise, middle-aged brain to stay in great shape, there ARE things you can do. Number one: stay physically active. Thirty minutes or more, five times a week, or more.

Strauch thinks it’s time for a “middle-aged revolution.” After all, she says, the numbers are on our side. Maybe we need a better label, though. The word “youth” has such a nice whoosh to it.  “Middle-aged,” not so much.

Let’s all go for a long walk, run or bike ride and think about it.

News Flash: Our film Quick Brown Fox: an Alzheimer’s Story is now available on Hulu, Amazon and other digital sites.

Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:50 a.m., Thursdays at 4:54 p.m. and Fridays at 4:55 p.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area.  Podcasts available.

Here’s nest artist Kim Groff-Harrington’s website.

Desert Rain

It was pouring as I drove my tin-can rental car up the hill outside Tucson.  This is crazy, I thought.  Crazy that it’s raining in the desert, and crazy that I haven’t turned back yet.

I listened to the news as I splashed along.  An 85-year-old man, known to have dementia, was missing: went to the supermarket, never returned home.

I pulled into the Tucson Mountain lot.  The rain suddenly stopped.  So I grabbed my knapsack and began to follow the first trail I saw.

A hundred yards from the car, I hesitated, confused.  The trail had disappeared.  Or rather, there were suddenly half a dozen trails: all formed in the past hour, by rivulets of rain.  Whatever footprints might have once marked the real trail had been washed away.  There was no one else around.

This must be what dementia feels like, I thought.

I turned around and spotted a stone shelter just above the parking lot.  My beacon: When I turned around, I would head straight for it.

I knew I was in no danger, not really, yet I felt queasy: do scorpions come out after a rain in the desert?  Rattlesnakes?  I had no idea.  Could the clouds gather again so quickly and rain hard enough to cause a flash flood?  Probably.

I felt small and humble and not very smart.  But I pressed on, thirsty for a little fresh air and exercise.  Twenty minutes, then I’d turn around.

40 minutes later, I made it back to where I started, dry and unbitten by any snakes (though I did have a cactus needle stuck in my sock), diving into the car just as it began to pour again.

Maybe it was the sheets of rain or maybe it was the fact that I didn’t have a Tucson map, but I got myself all turned around trying to find a café I remembered. I pulled into a 7-Eleven.  The cashier had no maps and didn’t know Tucson much better than I did.  But a girl in a pizza parlor shirt came in to buy cigarettes for her boss.  She looked so young the clerk carded her.  I asked her if she knew how to get to 4th Avenue.

“I just moved here from California,” she said.  “But I’ve got a map in my car.  You can have it.”

When I told my dad and stepmom I’d come down to see them in Phoenix, I did not expect rain.  I did not expect to get lost on a trail or in Tucson.  Visiting Phoenix, I am used to feeling like the youngster: invincible, unwrinkled (OK, maybe less wrinkled), high on Vitamin D.  Like the girl from California who no longer needed her map, not like the man I heard about on the radio.

After that first day, the sun came out and stayed out.  I took a map on my next hike, the beautiful Mormon Trail loop at South Mountain.

This time, there were plenty of footprints.  And other people, like the two men I passed—skin like armadillos, Lawrence of Arabia-style sunhats flapping—so deep in conversation they barely nodded at me.

“The thing about cosmology,” one said to the other, “is that it’s isotropic!”

      Isotropic: I looked it up later.  It means exhibiting properties—such as light transmission—that are the same in all directions.

The desert may feel isotropic after rain, but it’s not.  One way leads to confusion; the other back to the car.

We humans are not so isotropic either.  And yet.  If you pull out for the wide wide shot, we too are part of cosmology, of the infinite, isotropic universe.  Especially in middle age: we’re young, we’re old, we’re every age we ever were or will be all at once.  Sometimes in one hour of hiking.

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