therestlessnest

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

Archive for the category “dementia”

Love in the time of Chaos

img_2891What is so fascinating, in this new and disorienting era in which we’re now living, are the connections that form amidst the chaos.

Last week, I was in Olympia for Alzheimer’s Advocacy Day. What a day of connections: of hearing and sharing stories; of witnessing the love that motivates families living with Alzheimer’s to go to the state capitol and talk to their representatives, even in this chaotic season when so many other causes cry out for their attention.

If you—or your husband, wife, mother, father, friend—are living with Alzheimer’s, you are accustomed to a baseline level of chaos. But when there’s a sense that chaos has been unleashed in the world on a larger scale, too, life can feel very—untethered. EndAlz

My mother’s Alzheimer’s disease began to rapidly accelerate in the summer and fall of 2001. She was quite unaware of the events of September 11. This may have been a blessing for her, but to us it was alarming. The country was in chaos. Our mother’s brain was in chaos. How to care for her, whether and where to move her, were the urgent questions that crowded our minds, even as we worried about war and terrorist threats. And then there was the daunting and dismaying challenge of explaining it all to our children—explaining not only what was happening in our country, but what was happening to their grandmother’s brain. Our hearts were breaking for her, and for the world, all at the same chaotic time.

img_2886“Let love reign,” is the symbolic message of the Irish Claddagh rings my husband Rustin and I wear as our wedding bands. On this fraught Valentine’s Day, let love indeed reign. It is our best chance at finding pathways through this time of chaos. Romantic love. Familial love. Friend-love. But most of all, the compassionate love we are suddenly seeing everywhere. While I was in Olympia, Rus was filming for the International Rescue Committee: emotional stories of refugee families reunited at SeaTac after the presidential immigration ban was stayed.

Let love reign and rain: in airports, town halls, capitols, courtrooms; let it reign wherever people are saying, “We are better than this. We are more loving than this. We can find ways to help families overwhelmed by dementia; we can welcome refugees overwhelmed by long, long journeys away from war and danger.”

Last week, I was lucky. I got to witness love reigning and raining everywhere: in the stories my husband told each evening about the refugees; in the stories I heard in Olympia. So now, in that spirit, I’m offering a Valentine’s Day gift. HBBfinalcoverEmail me your address (annhedreen at gmail.com) and I will mail you a free copy of my book, Her Beautiful Brain. Those many kinds of love are all there in my story, along with more than a few kinds of chaos. I’m also happy to send it to someone you know—just give me their address. I promise not to save or share anyone’s info.

Happy Valentine’s Day from the Restless Nest. Let love reign in this time of chaos.

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At the Edge of the World

img_2785            This is where I am: on the sandy, foamy, whitecapped edge of America. Last time I visited this beach, I wrote about the epidemic of earthquake fear then sweeping the Northwest, following the July 2015 publication of ­­­­­­­­Kathryn Schulz’s New Yorker article, “The Really Big One.” Maybe it’s just as well to be out on the wide-open Washington coast when the big one hits, I speculated. It would all be over pretty quick: one big, obliterating tidal wave. Boom.

And here I am again, feeling like the Big One did just hit us. It didn’t wipe us out. Yet. But it shook us to our core; challenged assumptions we’d held for months; changed the way we see ourselves and everyone else. Now we’re all rummaging through our psychic wreckage for salvageable scraps of energy, optimism, drive. We’re sorting useful anger from destructive anger. We’re demanding of ourselves that we learn to understand the people we quite recently referred to as Haters. We’re exhorting each other to eat, sleep, exercise, hug and read about a hundred articles a day.

I have been reading a lot, and I’m sure you have too. Here are a few post-election essays I’ve found really useful: Dame Magazine’s Don’t Tell Me to Calm Down, by Heather Wood Rudúlph ; Rebecca Solnit’s essay in The Guardian, Don’t Call Clinton a Weak Candidate, and, for when you’re ready to stop keening and take constructive action, New York Times’ columnist Nicholas Kristof’s A 12-Step Program for Responding to President-elect Trump.

But I’ve also been thinking often of Hillary Rodham Clinton, the human being. Not the superhuman political candidate, but Hillary. She’s too strong to need our pity. But what about empathy? What about taking a few minutes to think about what it must be like right now to be her? That’s what I’ve been pondering. I’m glad she has Bill and Chelsea; I’m glad she has dogs to walk, woodsy paths to walk on, grandchildren to cuddle up with. I’m glad she has time, although it must feel utterly strange to so suddenly have it. I’m sure time was really the last thing she expected to have right now.

On Wednesday night, Hillary gave us a brief public glimpse of what her life has been like since the Big One hit. Long before the election, she’d been invited to speak at a gala for the Children’s Defense Fund, the organization where she worked as a young law student. She admitted that she had been tempted to stay home. Instead, she showed up for her long-time mentor, Children’s Defense Fund founder Marian Wright Edelman, and gave an emotional speech about the need to protect vulnerable and nonwhite children from hate talk and hate crimes; about how all of us must “believe in our country, fight for our values and never give up.”  17clinton-master675

My hope for Hillary is that someday soon, she can have a good laugh at this crazy cosmic joke. I don’t mean that she—or we—will ever be able to laugh it off. The stakes are too high; vigilance must be our default mode. But the kind of laugh where you just howl loudly, saying to yourself something along the lines of —this is so insane!—that kind of laugh can be cathartic. It can actually break through the torpor and sadness and make it possible to eat some toast and start your day.

After all, the only way the Republicans could beat her was to run an evil clown instead of someone who could in any way be construed as her peer. For a while, we all thought it really might be some crazy joke. Until it wasn’t. But that doesn’t mean we can’t take a break from fundraising, organizing, marching, volunteering and vigilance and laugh, now and then, at the absurdity of it all.

Go for it, Hillary. You deserve it.

Want to send Hillary a card or letter? Here’s her address: PO Box 5256, New York, NY 10185. 

HBBfinalcoverA final note: Hillary Clinton and Tim Kaine were the only candidates who ever talked about the importance of funding Alzheimer’s research (which WAS on the agenda for the December legislative session, until Congress signaled its intent to wait on appropriations until March 31). Just another reason I’m grateful to her. 

How Trump Made Me Love My Day Job

th-3       As I write, Donald Trump supporters are lining up outside a stadium about thirty miles north of here for a rally that begins many hours from now. This is confusing to me. Lining up for Trump? Who are they?

Yesterday, my husband and I met an immigrant family of nine and talked to them about how a local non-profit is helping them through their grief over the death of their baby girl. Last week, we visited an Adult Day Health Center that serves people who have dementia or have suffered brain trauma. We talked to a woman in her fifties whose face lit up with joy as she described how the time she spent at the center had given her the courage to go back to work after a stroke. The week before that, we interviewed a Seattle teacher who found an affordable apartment for herself and her son, with the help of a housing non-profit.

This is our day job: making short films for non-profits to help them raise money and spread the word about what they do. August is always a busy time for us, as our clients get ready for their fall events.

We feel very lucky that we get to do this work for a living. That we get to hear, and tell, stories about people helping people. Stories that debunk, over and over again, the American myth of rugged individualism; that show how much we Americans can do, when we pay attention to one another’s needs. When we are able to truly see each other, and recognize that we are all connected.

Which is why it is so hard for me to understand the Trump supporters who are standing in that line. I wonder who they are, and how it is they came to actually support this candidate who stands for slammed doors and high walls and connections based only on hate and fear.

The people I meet in my work are not the West Coast bubble-dwelling limousine liberals Trump loves to disparage. They are people who have rolled up their sleeves to actually find solutions to the toughest problems we face: homelessness, affordable housing, how to help vulnerable people weather trauma, loss, illness. How to make our schools better. How to protect our wild places for the next generation. If I dwell in a bubble, it is one in which compassion and inclusion are the norm. It is one in which people are allowed to be poor, or new to this country, or different in abilities, and dignified at the same time.

The interviews we do are my favorite part of the job. I love to listen to peoples’ stories. I love it when they surprise me, which they nearly always do. What’s much harder is what comes next: going back through those interviews, selecting the very best bits, and laying them out in an order that makes sense. It’s so important to me to get their stories right, especially during a year when slandering whole groups of people has become the Trumpian norm.

So I’m going to get back to work now. Thanks, Trump, for inspiring me to appreciate my day job even more. And I think we all know your rally is not going to make a difference in how our state votes. Because not very many of us live in your bubble. Thank God.

Here’s some inspiration to put on your calendar: A reading by writers who have experienced homelessness, September 12 at 7pm at the University Branch of the Seattle Public Library. Check out  Nicole Brodeur’s Seattle Times column about the Mary’s Place writers and their writing group leader, Julie Gardner.

 

 

 

What We Say Matters

IMG_1415I’m thinking about the power of words this week, even more than I usually do. A word can be a weapon. A word can be a force for good. Words can heal or hurt. In a few days, I’ll be participating in a conference organized by the University of Washington School of Nursing called Elder Friendly Futures, and one thing we’ll talk about is words: how the words we choose define—no, become—what we think. And not just which words, but exactly how we say them: Elder can connote respect—or decrepitude. Friendly can sound saccharine—or inviting. And what about Futures? It’s the “s” that is intriguing, isn’t it, with its suggestion that there are many possible futures that could be friendly for elders, not just one.

Vice President Joe Biden is an elder. Perhaps barely so, by today’s ever lengthening standards. He is 72 years old. But more than his actual age, it is his scars and the way he wears them that give him Elder status. This is a man whose wife and daughter were killed in a car crash when he was 29 years old and newly elected to the Senate. Now, more than 40 years later, he is again freshly grieving: this time, the death of his son Beau from brain cancer. How does he keep going? What makes his life meaningful? Faith. Service. In other words, the ability to see the larger world outside your own small world, even when your eyes are clouded with tears. For most of us, this is a learned skill, and the price of such an education is high, sometimes higher than we can bear.Joe_Biden_Stephen_Colbert_YouTube_img

In a riveting TV interview, Biden told CBS Late Show host Stephen Colbert about a quote from Danish philosopher Søren Kirkegaard that his wife Jill taped to his mirror: “Faith sees best in the dark.” Biden used it as a way to talk about faith as the place you can go: even, or perhaps especially, when you feel like your faith is imperfect, or gone altogether. It seemed important to Biden to present his faith humbly. Modestly. He chose words like solace and ritual. It was a moment in which words, carefully but honestly selected, drew us in: whether or not we share Biden’s faith, whether or not we want him to run for president.

There was another public profession of faith last week that was exactly the opposite: Kentucky court clerk Kim Davis, jailed for refusing to grant marriage licenses to LGBTQ couples, triumphantly proclaimed, on her release, that she wanted to “give God the glory,” because, “his people have rallied, and you are a strong people.”

What she meant was clear: her God is not about finding people when they’re lost in the darkness of grief. Her God is about taking sides. Kicking people out of the club. Words are powerful. When Davis said, “you are a strong people,” she meant people who believe, as she does, that gay marriage is wrong.

Maybe Davis, who is 50, will choose different words when she attains the hard-earned status of elder, in about 20 years. Maybe not. But as I think ahead to the Elder Friendly Futures Conference and ponder what those futures might look like, Joe Biden’s empathy and wisdom give me hope.

second-wind-cover1In his stereotype-busting book Second Wind: Navigating the Passage to a Slower, Deeper, and More Connected Life (think about the positive power of those words: slower—deeper—more connected), author Dr. Bill Thomas writes, “Elders have access to a reservoir of feelings and access to a level of emotional control and insight that far exceeds that available to adults… At this moment in history for both cultural and planetary reasons we need elders more than ever before.”

IMG_1075Yes. And when we realize how much we are going to need their wisdom and insight as we face all kinds of global and local challenges, our elders’ futures take on a whole new importance. As does the importance of nurturing our own wisdom, as we move toward our own elder futures, which I truly hope will be friendly.

Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts November 2, 2015. Six Monday nights. Non-credit = all inspiration, no stress!

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

 

 

My media adventures

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Alzheimer’s disease is so hard to talk about. Or write about, or make films about. But here’s what I’m learning this summer: focusing on volunteering for Alzheimer’s research is somehow easier, and if it’s a way to get people to talk about this deadly illness that now affects 5.3 million people and costs our country $226 billion a year, then I’m willing to do it. And if you actually saw me on Fox News’ Health Talk and you’re inspired to volunteer for research, here’s the Alzheimer’s Association’s Trial Match page. Go for it! IMG_1988As I wrote about earlier this summer in the Wall Street Journal, you will feel more useful than you ever have in your life.

I am forever grateful to Dr. Manny Alvarez and his wonderful producer, Paula Rizzo (check out her lively website and book on productivity, Listful Thinking) for inviting me to share my experiences on Health Talk. Ann_Fox makeup _2873I’m still taking in the crazy whirl of it–lights, camera, makeup–but hoping, more than anything, that a few viewers are persuaded to volunteer.

Momandme1998I volunteer for my mom. But I also do it for myself, and my children, and their future children.  And for the millions of people, worldwide, who are living with Alzheimer’s now, or will be someday soon: unless, that is, there’s a research breakthrough. Which is more likely to happen if more research volunteers step up. Remember, you don’t have to have Alzheimer’s, or have it in your family; control subjects are always needed.

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

Beyond the Trail

IMG_1864  “End of Maintained Trail,” read the sign. “Travel Safely. Leave No Trace.” We had hiked the 3.1 miles up to Glacier Basin in Mt. Rainier National Park on a mid-June day that looked like late July: wildflowers everywhere, sky bluer than blue, glaciers looking decidedly underfed. I could use that “end of maintained trail” metaphor to riff about global warming, couldn’t I? But my mind is traveling in a different direction. More of a life direction. More of a… what it might feel like to get a scary diagnosis direction.

For 5.3 million Americans living today, that diagnosis is Alzheimer’s disease, and it may as well come with a trail’s-end message attached: This is the end of the maintained trail, pal. Sorry. Travel safely. Oh, and leave no trace of your fears and feelings because frankly, the rest of us can’t handle hearing about it. For their family members, the diagnosis message is the same: your life, too, will now proceed on unmarked terrain. There will be rocks, some slippery, others sharp. There will be immoveable boulders. Crevasses of anguish. The endless putting of one foot in front of another, as you wonder what lies around the next switchback or over that looming ridge.

The Alzheimer’s Association recently switched its awareness month from November—cold, barren, Printdark—to June: mild, lush and flooded with light. At first, I didn’t get it. November had always seemed like the perfect Alzheimer’s Awareness month to me. But I think the point is to get us all thinking about just how long the days are for people with Alzheimer’s and their caregivers. What a marathon this diagnosis is. What a steeplechase—a better word, with its implied challenges and roadblocks and muddy sinkholes.

June in the Northwest is often a steeplechase sort of month in which it’s never quite safe to plan a picnic or plant something that might not respond well to a sudden chill or storm. It’s a month in which you never quite know expect. The only thing you do know is that the days will be long, and one of them will be the longest day of all. And mostly, we view that as a good thing: those long, creamsicle Solstice twilights and sunrises; those nights that even at midnight, never seem fully dark.

logo       On this year’s Solstice, Sunday, June 21st, I’ll be participating in an Alzheimer’s Association event: a “Longest Day” write-and-readathon at Seattle’s University Bookstore. It’s our first year, so we’re not quite sure what we’re doing and we’re definitely not going to try to keep it up for all 16 hours between dawn and dusk. But for four hours in the afternoon, our goal will be to read and write in honor of someone we love who is a caregiver or is living with or lived with Alzheimer’s disease. For me, that will be my mom. I don’t know yet if I’ll write about her or Alzheimer’s—I’ve done quite a bit of both. Maybe instead I’ll write about some of the things she loved to do. Or her favorite books and authors. Or how she might have liked to fill a Solstice day if she were alive and well. ArleneYoung

Mom’s life was never much of a maintained trail. She scrambled and improvised all the time, which made her a great role model for her six children, especially as we tried to figure out how best to help her when Alzheimer’s began to rumble like an avalanche after a June rain. But she was an English teacher. She loved reading and writing. I like to think she really would be honored by a write-and-readathon, on the year’s very longest day.

1904066_484139051691653_1188410800_nThe Details: June 21, 1 to 4pm, University Book Store, Seattle, the Alzheimer’s Association’s Longest Day” write-and-readathon: Join us! or come for the Open Mic reading at 3pm.

Just in: a new review of Her Beautiful Brain from Full Life Care blog editor Kavan Peterson. I am so honored to be speaking at Full Life’s fundraising breakfast in October. You can buy Her Beautiful Brain from Amazon or any independent bookstore. Find a bookstore here. Order the Kindle version hereHBBfinalcover

 

Diagnosis

IMG_1669 Imagine: your doctor knows you have cancer, but chooses not to tell you or your family. Unthinkable, isn’t it? And yet consider this: fewer than half of all seniors diagnosed with Alzheimer’s disease or their caregivers are actually told of the diagnosis.

I just spent three days in the other Washington at the national Alzheimer’s Association’s Advocacy Forum. IMG_1661I was one of a thousand volunteers. We were loaded up with all kinds of facts and figures to use in conversations with all 12 of our Washington state senators and representatives and their super-smart aides. But that factoid about diagnosis is the one that stuck with me. Really? Really: 55 percent of seniors diagnosed with Alzheimer’s and their caregivers are not told.

If the issue was that 55 percent of doctors assume someone with dementia would not remember their diagnosis, so why bother, then surely they would at least tell that person’s family caregiver. But no, in 55 percent of cases, they don’t even do that.

I can tell you many dire and alarming facts about Alzheimer’s disease. For example, it is now the most expensive disease in America. This year, we will spend 226 billion dollars on caring for people with Alzheimer’s. That number is expected to soar to 1.1 trillion in 2050.

Two thirds of those dollars come from Medicare and Medicaid. EndAlzThe other third comes out of the pockets of overwhelmed families. None of this is sustainable, which is why one thousand of us were on Capitol Hill trying to make the case for funding research now—the goal is effective treatment, prevention or even a cure by 2025—so that we won’t be facing demographic and economic disaster later.

But that business about diagnosis not only got my attention, it got the attention of just about everyone we talked to. Why? Because it screams, louder than dollars, everything that is wrong with the way we view Alzheimer’s disease. It says: we have no reason to hope. There’s nothing to offer people who are diagnosed. Better they continue to muddle along, not knowing. None of which is true. There is hope, aka progress on the research front, and there will be more, especially if we start adequately funding the scientists who are working as hard as they can on everything from genetic decoding of the disease, an area where huge progress has been made in recent years, to finding ways to reduce or even dissolve plaques or otherwise alter brain chemistry. And it is not better for families to muddle along, not by a long shot. A diagnosis of dementia calls for both long-term planning and short-term safety and lifestyle changes, including emotional support for both the person with Alzheimer’s and their family members.

A doctor’s decision not to share a diagnosis is so redolent of the bad old days, when they could get away with being that patronizing. When patients were not perceived as having rights, or even dignity. And it evokes shame and stigma: surely you wouldn’t want to speak out loud about an illness like Alzheimer’s, now would you?

One of our goals on Capitol Hill was to persuade lawmakers to support the HOPE for Alzheimer’s Act, which was introduced for the fourth time this year. The HOPE Act ensures that Medicare patients who are newly diagnosed with Alzheimer’s disease are not only told of their diagnosis, they will have a detailed discussion with a health care professional about treatment and support options. Pretty simple. Pretty important.

When my mom was finally diagnosed after nearly a decade of wondering what was wrong with her brain, of feeling that shame and stigma that it might somehow be “her fault,” such a conversation would have been a miracle. We had no idea what to expect or what we should do. It’s long past time to make sure that doesn’t happen again.

And thankfully for us, my sister had the good sense to call the Alzheimer’s Association.

For more Alzheimer’s stories, news and resources, check out the AlzWA Blog, where this piece is also posted. 

HBBfinalcoverUpcoming readings: April 1, 7pm, St. James Cathedral Pastoral Outreach Center, 907 Columbia Street, Seattle. 

April 30, 7pm: The Regulator Bookshop, Durham, NC

May 26, 7pm: Book Culture, 450 Columbus Ave, New York

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

 

 

 

The Un-cool Writers’ Club

1003375_10204029713357348_4120200472773550975_n-1 If you aspire to be a cool writer, then whatever you do, don’t hang out with me. I am your worst nightmare. Here’s why: for starters, I am old, so old I may as well tell you how old. 58. Fifty-eight! This would be acceptable if I had published many volumes by now. But no: I just published my very first book. And my book is a memoir. This might be acceptable if I was a recovering addict or had escaped the Taliban. But no: I am the daughter of a beautiful, smart woman who drew an unlucky card called younger-onset Alzheimer’s disease, and that is what I wrote about. Worse, my current work-in-progress is also a memoir, on an equally unhip topic: faith and doubt.

There’s more. I did not get my Master of Fine Arts degree until I was 53: enough said. And I have another career, which confuses people. IMG_0871It’s a reasonably cool career—documentary filmmaking—but alas, I’ve never had a film at Sundance (which would vault me right into the category of Permanently Cool). And I make films with my husband, which is way less cool than if I were doing it solo. Speaking of my husband: we’ve been married 27 years. Yikes! Just call us Ward and June!

And then there’s my lifetime issue of not wanting to be mean. In fact, right now, writing this, I’m uncomfortable with the whiff of snarkiness I detect; the implication that I don’t like cool writers, because I do. I like many cool writers. But that is not my point. My point is this: over my 58 years, I have learned, sometimes reluctantly but ultimately with relief, how wonderful, how freeing, it is to live life as not only an un-cool writer, but an un-cool person.

My education in un-coolness started early. There were painful drills, there were pop quizzes. But I faced my first big exam at the beginning of 9th grade at Seattle’s Eckstein Junior High School. All the aspiring cool girls, my sad self among them, hoped to be selected for something called “Girls Club,” which involved wearing special scarves and blouses once a week and engaging in lightweight service projects. Really, “Girls Club” was a sanctioned clique. My best friend—the one with whom I’d bought journals and real fountain pens and candles and browsed for old-fashioned children’s books at David Ishii’s bookstore in Pioneer Square—made the Girls Club cut. I did not. She dropped me with stunning speed.

When I came up for air after a good long cry, I realized what a great gift this was. I had been spared all the stress and effort it would have taken to retain my status as a Girls Club girl. I was free! Free to be my un-cool self. To keep on writing in my ink-stained journals; to keep on riding my bike to David Ishii’s or the Arboretum or anywhere else I could curl up with a book, undisturbed by cool people.

My junior high years coincided with my parents’ divorce, which, in that long-ago era, was definitely not a cool thing. But it was my Goddard College MFA advisor, Victoria Nelson, who helped me understand, decades later, how the divorce contributed to my liberation. Arlene and 6 kidsAll those hours I spent babysitting my younger brother and sisters while my mother went back to college gave me freedom to continue on my un-cool, future-writer path: unsupervised by adults, unseen by cool peers, I could write my fervent, un-cool poems and journal entries and read, read, read while my siblings watched cartoons or played. Sometimes we played school, with me as teacher. Or pioneers, or explorers. So not cool. I loved it.

And now that I’m a late-blooming, un-cool author, I’m more grateful than ever for the un-cool path that got me here. Not much I can do about my age. Nor my attraction to the wrong subjects. Nor my love of memoir writing, the actual hours spent writing, for which I credit my first Goddard advisor, Michael Klein, who taught me that memoir writing could be part poetry, part journalism, part essay: a hybrid, a blend, not unlike documentary filmmaking. Not unlike the way my restless brain has always worked.

The path of the un-cool writer is unpredictable. It’s more likely to result in rewards that can be measured in moments—conversations I’ve had after readings, emails from long-lost friends—than in big royalty checks or New York Times reviews. But it is the path I’m on, and I am grateful every day.

Upcoming readings: April 1, 7pm: St. James Cathedral Parish Hall, Seattle.  April 30, 7pm: The Regulator Bookshop, Durham, North Carolina.

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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.

 

 

                       

The Accidental Lobbyist

EndAlzWe were five for five. The first five legislative aides we visited all had personal connections to Alzheimer’s disease: three grandmothers, one aunt and one best friend’s grandmother. This could work, I thought. We could build support, one aide’s grandma at a time!

“Building support,” also known as “lobbying,” is a word that has acquired a lot of baggage in the last five or fifty or 250 years, depending on how you’re counting.

“Did you lay some sports tickets on the desk when you walked in?” my son asked.

“Yeah, right,” I said. “Doesn’t quite work like that on the nonprofit side of the fence.” But the question did make me wince. Because in truth? The day I spent walking around Olympia with a purple sash tied, beauty-pageant style, from shoulder to waist made me proud to be a volunteer lobbyist. I was one of 105 humble foot soldiers who showed up to help the Alzheimer’s Association make the rounds. Most of us were rookies. Fortunately, we were matched up with experienced staffers who’ve done this before. My team leader was Janet Ceballos, social services manager for the Western and Central Washington chapter. Seven times, I watched her approach a state lawmaker’s reception desk, her face friendly but determined, her palm-sized note card handy in case she needed it.

We weren’t on a hard-sell mission. In 2014, state lawmakers passed a bill establishing an Alzheimer’s Disease Working Group, whose job it is to come up with ways our state can cope with the predicted dramatic increases in the need for dementia care over the next few decades. We may not be Florida, but we have a sizable Baby Boomer cohort that is likely to stay right here in Washington as they age. This will be a nightmare if we don’t plan ahead. So our goal, as we walked from one office to another, was to remind lawmakers of how important it is to continue to support this work.

What you never know, when you bring up Alzheimer’s, is whether the person you’re talking to has any personal connection to the disease. What is increasingly clear is that just about everybody does.

“This feels good,” said one member of my team. “It’s democracy in action.”

Yes it is, and yes it did feel good: to be making personal connections instead of sending emails or “liking” Facebook posts. (Check out these happy pictures on the Chapter blog site: good feelings all around!)

And about those purple sashes: at first, I was hesitant. Weren’t they just a bit too Miss America-esque? But then I noticed how my fellow volunteers stood up a little straighter and walked a little taller once they got their sash on. And there was no mistaking what the sash meant: “Alzheimer’s Association” was written loud and proud across that purple. And as we walked, I thought of my mom, who lived with Alzheimer’s disease for a long time, and the looks people would sometimes give her, if she said something odd or repeated herself or couldn’t add up her change. I thought of how I would feel: first embarrassed, then angry that I was allowing myself to feel embarrassed. So it felt good to wear the sash: for Mom. For all those times when I allowed the stigma of Alzheimer’s to sting.

Momandme1998     Just wearing that sash might have been the best message we volunteers could deliver to Olympia. Because what we were saying, to the aides whose grandmothers have the disease and to everybody else, is: we are done with shame. We’re done with stigma. We’re ready to roll up our sleeves and get to work on that state plan, and we hope you are too.

HBBfinalcoverBuy Her Beautiful Brain (4th on the Ravenna Third Place Books’ current bestseller list!) from the bookstore of your choice. Find a bookstore here. Order the Kindle version here

Upcoming reading: Friday, March 6, 7pm, Mt. Baker Park Presbyterian Church, Seattle. It’s a group reading–poetry, fiction, memoir–and I’ll be sharing new work from my next book (working title: The Observant Doubter.)  

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.

Watching Still Alice

images“I wish I had cancer,” 50-year-old Alice Howland says to her husband, not long after learning she has younger-onset Alzheimer’s disease. With cancer, she explains, come pink ribbons and talk of empowerment and courage. With Alzheimer’s, she sees only shame and isolation ahead. The end of her career. The distaste and inevitable distancing from friends and family. And she is right. Though the Alzheimer’s Association and many other advocates are doing everything possible to change our perceptions about the disease, we still have a long way to go towards the compassion and empathy with which we now view nearly all other illnesses.

images-1          Alice Howland is a fictional character, but in the movie Still Alice, Julianne Moore brings her to life with shattering clarity. A professor of linguistics at the top of her game, Alice is an almost unbelievable paragon of ordered, focused achievement. When she and her on-screen family are introduced, it’s hard to like them, they’re all so successful and so—chilly. It’s as if they live in a walk-in fridge, where everything is in its place and nothing is warm or sensual. But like a power outage in mid-summer, Alzheimer’s quickly breaks that down. We watch Moore melt in the middle of a presentation. We watch her forget that she just met her son’s new girlfriend. We see her panic because she can’t find the bathroom in her own home. Meanwhile, her husband and three grown children respond as they are able, or not. Turns out it’s the youngest daughter Lydia, played by Kristen Stewart, who has the love and depth to handle the horror of caring for Alice as she crumbles. julianne-moore-kristen-stewart-watch-julianne-moore-and-kristen-stewart-shine-in-new-still-alice-trailer

Still Alice had me from the first minute. Alice’s story is not my mother’s, but it was close enough to make me squirm. My mom was in her late 50s when she began to worry about her brain. Though she was not a Columbia professor, Mom was brainy and proud of it. And like Alice’s children, we were proud of our mother; proud of the fact she’d gone back to college after our parents divorced and earned a bachelor’s and a master’s degree. This made it even more surreal to have to accept Alzheimer’s as her fate. Still Alice brilliantly captures that surreal air that seeps into a family along with a diagnosis of early dementia, without the use of special effects or camera tricks but instead by staying very close to Alice and her ever more claustrophobic and confused point of view. Moore’s eyes say everything: not in a silent movie way but subtly, alternating between distilled effort and brackish flatness.

As I watched, I shifted from identifying with Alice and imagining the terror I know I will feel if Alzheimer’s turns out to be my fate to remembering how I was with my mother, identifying first with Anna, the severe oldest child who can barely stand to be in the same room as Alice and then with Lydia, whose heart is breaking but who is able to still treat her mom with humanity and grace. I wish I’d been Lydia more of the time. But this also is something the film captures so well: we don’t know until we get there how we’ll do. What will make us recoil and what will inspire us to rally.

10439509_10152589930319379_3980131392185575086_n         The most brutal scene for me was when Alice tries, and fails, to follow the suicide instructions she had left herself earlier in her illness. I remember reacting this way to the same scene in Lisa Genova’s best-selling book by the same name. It is perhaps the cruelest aspect of Alzheimer’s: death with dignity, as we call it in the state of Washington, is impossible. And yet: in the final scene of the movie, we see that Alice, now beyond words, is still capable, somehow, of love, thanks to the daughter who is still there to give it. I didn’t have Lydia’s strength and devotion. But lucky for me, I had brothers and sisters, children, nieces and nephews. Together, we did the best we could.

Still Alice is a small, slice-of-life film. It is only one Alzheimer’s story. But thanks to Julianne Moore, who has been nominated for an Oscar for her performance, and Kristen Stewart, who should have been, the movie treats this horrifying illness with exactly the compassion and courage that Alice moans is missing from the way we view Alzheimer’s: never guessing that by the end of her story, she herself will be raising the bar.

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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.

 

 

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