therestlessnest

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

Archive for the tag “Alzheimer’s Association”

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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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 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.

Why I Volunteer for Research, Part Two

QUIBRO_hires2Although being a control subject in Alzheimer’s research studies involves plenty of memory tests, there are neurological tests too. I was tickled with feathers, tapped on the elbows and knees, peered at with a penlight in my eyes. And there were psychological questions: On a scale of one to ten, do you usually feel life is worth living?

I was weighed and measured. I gave blood. I peed in a cup. My family tree was drawn, with special attention to anything that might be relevant: Grandma Cere’s Parkinson’s disease; Great Aunt Eine’s Alzheimer’s disease, which started in her seventies. I was approved for a lumbar puncture, more commonly known as a spinal tap, and a week later, I came back and curled up in a ball while two tablespoons of fluid were extracted from my spine with a long quivery needle: two tablespoons that would be turned into 50 droplet-sized samples for research. My husband filmed nearly all of it, from What day is it? right through the spinal tap. Later, we filmed interviews with four different doctors.

But for me, those first filmmaking visits to the University of Washington’s Alzheimer’s Disease Research Center (ADRC) turned into more than just clips for our documentary, Quick Brown Fox: an Alzheimer’s Story. It was the beginning of what has become a meaningful part of my life. I am a regular research participant. Every fall, the ADRC calls me in. Depending on what studies they’re running, they may ask me to undergo a spinal tap (I’ve done five so far), but mostly it’s memory and neural testing. Once, a different UW department asked me to take part in an Alzheimer’s study that required an MRI: a Star Trek-like experience in which I lay down on a sort of conveyor belt that slid me into a tube that took pictures of my brain.

Some people are surprised that I want to participate in research. They ask if I get nervous about the memory testing, and even though I don’t suffer from a general fear of test-taking, the answer is: given what’s at stake, of course I do. I breathe a lot as I walk into the VA on the appointed day; I pep-talk myself about how the best strategy is to stay calm. Once the testing starts, I try to relax into it and just stay focused.

But what if one year I don’t pass with flying colors? Sure, that’s a scary thought. But if it happens, wouldn’t I want to be in immediate contact with the top Alzheimer’s researchers in my city? Wouldn’t I want to participate in, for example, a drug trial for people in the early stage? Yes and yes. And meanwhile, given my high level of fear about Alzheimer’s, it is extremely comforting to know that I’m still a high-functioning control subject.

It is also important to feel like I’m doing something for the cause of ending Alzheimer’s. I don’t have large amounts of money to donate. But I do have small chunks of time that I can gladly give. And as long as I don’t have to change a tire or carry bear spray, I’m in.

Speaking of, wouldn’t it be great if employers gave people time off to volunteer for research? As a self-employed filmmaker and writer, this is not an issue for me, but for many people it is. And if we could step up the pace of research, would that not be a wonderful thing?

Note: I wrote this post for the Alzheimer’s Association’s brand-new regional blog: check it out 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!

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

 

Why I Volunteer for Research, Part One

EndAlz

Here are two of the many things that scare me: having to change a tire all by myself (because I’ve never done it) and camping in bear country (because I have). Here are two of the few things that don’t scare me: taking pop quizzes and getting poked with needles. These slim categories of fearlessness make me a natural volunteer for Alzheimer’s research.

My mother grew up in Montana and nothing much scared her. She not only changed tires, she put chains on tires by herself, tying them together with shoelaces if they didn’t fit right, lying under the car in a snow storm. As for camping, after a twenty-year hiatus, she decided to try it again—solo, with four children in tow. We didn’t see any bears. The worst thing that happened was that we forgot spoons for our cereal. The best thing was being with Mom, far away from all of her city responsibilities, laughing along with the rest of us as we slurped our Raisin Bran and milk from our cups.

Mom was the kind of person you would put last on your list of People Likely to Get Alzheimer’s disease. She was smart and lively and fit; she taught high school English and read like crazy; she weathered two divorces and the loss of her third husband and raised six kids alone. But somehow, Alzheimer’s found her, and it found her early. She was in her late fifties when she suspected something was wrong, was finally diagnosed at 66 and dead at 74. Meanwhile, my siblings and I were marrying, raising kids, building careers and trying to help her cope with this awful hand she’d been dealt. (You can read about it in my memoir, Her Beautiful Brain.HBBfinalcover

What was so frustrating, of course, was how little we could do for our mother. Medicine offers no antibiotic, no chemotherapy, no surgery or drugs beyond a few pills that might slow the progression of dementia. We could give her our time, ourselves, the joy of grandchildren, the pleasures of a walk or chocolate or music. What we could never give her was our sorrow and rage about Alzheimer’s. So what could we do with those emotions?

One answer I found: volunteer for research.

For me, it started by accident. Twelve years ago, I looked up the University of Washington Alzheimer’s Disease Research Center (ADRC) in the phone book (remember phone books?) and gave them a call. I was seeking scientists to interview for a documentary about Alzheimer’s disease. But the administrator surprised me with a question of her own.

“Why don’t you volunteer for research?” she said. “As a control subject. It could be part of your film.”

QUIBRO_hires2And so, as I wrote in my book, I found myself in a room at Seattle’s huge VA Hospital, where the ADRC is located, taking all the memory tests I’d watched Mom flunk. The tests start with questions like, What day is it? Who is the president? and progress through tasks like spelling WORLD backwards, listening to a paragraph and recalling details ten minutes later, repeating back sequences of numbers, remembering short lists of words, distinguishing the words for colors from the actual colors, going back to that paragraph and recalling it again, going back to those numbers and doing the sequences in reverse order.

Despite my test-taking bravado, was I nervous? You bet. Am I glad I did it? Definitely.

To be continued…

Note: I wrote this post for the Alzheimer’s Association’s brand-new regional blog: check it out 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!

 I’ll be reading from Her Beautiful Brain at Ravenna Third Place Books on Thursday, February 12 at 7pm. You can pre-order it from Third Place or from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

 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.

The Longest Day

EndAlz

On the longest day of the year, the Alzheimer’s Association wants you to think. Use your precious and, God-willing, still-intact brain and think. Spend five of those one thousand glorious minutes of summer solstice daylight thinking about the people you know who are dealing with dementia and what the words “longest day” might mean to them.

The Alzheimer’s Association is betting you do know someone whose spouse, parent, grandparent, aunt, uncle, friend or neighbor is living with Alzheimer’s disease. Someone who knows the loneliness of caring for a person who once had so much to say and now says nothing at all, all day long. Or maybe she says the same thing over and over again. Or maybe he speaks, but it makes no sense. Maybe she or he is sundowning—there’s a good “longest-day” word—but in the dementia world, sundowning is not so pretty. It means getting agitated and cranky and sometimes even scary right when the rest of the world is getting ready for bed.

The longest day. Where my ancestors came from, it was and is a day of IMG_0461celebration. Of joyous gratitude for summer light and warmth. And many of the people who are in the early stage of Alzheimer’s are going to be able to enjoy the longest day of the year just as much, if not more, than the rest of us, because no one is better at living in the moment than people who can’t remember. If you can no longer follow a book or a movie, then why not get outside and smell the June flowers and soak up the extra June hours? Why not savor every strawberry as if it’s the first one you ever ate? Because as far as you know, it is.

But for people who are in the middle or later stages of the illness, all that extra daylight could be confusing or exhausting or both. Which means it will be exhausting for their caregivers, too. And lest you think we’re talking about a boutique illness, a sliver of the medical world, here are the hard facts: more than five million Americans are currently living with Alzheimer’s disease. Officially, Alzheimer’s is now the sixth leading cause of death in the U.S. But new research shows that it could be third, right behind heart disease and cancer. Last month, the New York Times ran a story headlined: “Alzheimer’s, the Neglected Epidemic,” citing research showing that in just one year, 2010, Alzheimer’s was the underlying cause in half a million deaths in this country.

For all kinds of reasons, it has been very hard to get people to feel the urgency of the Alzheimer’s epidemic. Maybe, until you see it up close, it is easy to dismiss as some sort of inevitable curse of old age. Something far off in the sundowning distance. But as the baby boomers grow old, we are going to be in deep trouble if we don’t step it up. Current federal funding for Alzheimer’s research is half a billion dollars a year. Sounds like a lot, doesn’t it? But cancer research commands more than five billion federal dollars a year. Heart disease: nearly two billion. And those investment have made a huge difference. Heart disease and cancer death rates are declining, even as Alzheimer’s deaths soar.

Some of the people you know who are affected by Alzheimer’s disease might be part of a “Longest Day” fundraising team. Give them a boost, if you can. But at the very least? Think of them. On the longest day or, better yet, every day.

Need help getting fired up about the urgency of the Alzheimer’s epidemic? Watch actor and comedian Seth Rogen’s testimony before Congress.

Her_Beautiful_BrainAnd save the date for my book launch: 3pm, September 7, at Elliott Bay Book Company in Seattle. You can pre-order Her Beautiful Brain from Elliott Bay, Powell’s Books, or the bookseller of your choice.

Dementia-friendly World

Momandme1998 For a few years after she was diagnosed, my mother said the words, “I have Alzheimer’s disease” out loud, in public and often. She was in her mid-sixties, looked young and fit, spoke like the retired English teacher she was. She understood that the clerk in the grocery store or the waiter in the restaurant would be more patient with her if they knew why it was taking her so long to find her credit card or sign her name. So she told them. She spread those little learning moments wherever she went.

I was the one who couldn’t get used to it. (I wrote a whole book about not Her_Beautiful_Braingetting used to it.) The looks we got in return—surprise, pity, shock—made me squirm. But later, when I had to say it for her because she no longer could, I remembered those early-stage days with a sort of wistful nostalgia. My indomitable mother looked the world in the eye and asked not for pity but for patience. And you know what? When you ask for patience, you often get it.

My mother went public because it made sense. She was being her practical, problem-solving self. She probably would have scoffed at the notion that she was a pioneer; helping to build what the Alzheimer’s Association calls a “dementia-friendly community.” And because I am now as old as she was—57—when she began to wonder if something might be wrong with her brain, I have to wonder if I would be so brave. No, I don’t wonder. I know. I am NOT that kind of brave.

When I forget a name or a word, or hit “save” instead of “save as,” or go to the store to buy the ingredients for Chicken Marbella and get everything but the chicken, or leave my driver’s license in my running shirt pocket for two days—I think that almost covers last week’s list—when I have those moments, all I feel is fear. Fear that someone will think that I’m… slipping towards Alzheimer’s. As if the shame of dementia would be worse than dementia itself.

In a recent essay in The New Yorker, Michael Kinsley wrote about how we are “comfortable with the idea that physical health is not just a single number but a multiplicity of factors. That’s where we need to arrive about mental problems. As we get older we’re all going to lose a few of our marbles.”

Kinsley was diagnosed with Parkinson’s disease twenty years ago at age 43. He writes about what it feels like to learn that he’s apparently already lost a marble or two: that his most recent tests show his brain’s executive functioning abilities have slipped. And yet he can still write eloquently, and at length. And he gave me a whole new way to view the concept of a dementia-friendly community.

If we were tolerant of a few “lost marbles” in the same way we tolerate a limp or a deaf ear—if we naturally, easily, rose to help people with dementia the way we help someone with a broken leg get up the stairs—the way I saw most clerks and waiters help my mom—we could create a dementia-friendly world. Not could, must: more than five million Americans are currently living with Alzheimer’s disease, and we know those numbers are going to soar as the Boomer generation ages. So let’s do it. And let’s start small: by just helping each other over those awkward moments. Your lost marble or two might be different than mine. Together? We’ll be fine.

This Friday, May 16, quite a few experts will be in Seattle for the regional Alzheimer’s Association conference, including Dr. Cameron Camp, who is a leader in helping communities become “dementia-friendly.” Camp will also be speaking on Thursday, May 15 at 6pm at Town Hall Seattle.

The Restless Nest is on the radio every Tuesday morning at 7:45 a.m. on KBCS.fm; 91.3 in the Seattle area. Podcasts available.

 

 

 

 

 

 

 

Alzheimer’s Walk

EndAlzI have written, spoken, made a film, submitted to five spinal taps. But I have never walked to end Alzheimer’s disease.

It is about time I did.

My first Walk to End Alzheimer’s will take place in a part of Seattle that would be unrecognizable to my mother, whether or not she had ever had dementia: South Lake Union, where the new Museum of History and Industry has taken over the old Naval Armory and a new waterfront park has taken over—what was there before? Mud, cattails, derelict docks?

Then there’s Amazon, of course, which has transformed the motley, low-rise warehouse district we used to call—well, we didn’t call it anything. It was “near the Seattle Times” or “near the Mercer Mess,” or for those of us in the picture trade, “near Glazer’s and Ivey-Seright.” And it was “near Jafco,” a sort of scrappy Costco precursor in a Soviet-style, concrete bunker just south of Mercer. Rustin and I bought our wedding bands at Jafco, an act of happy frugality inspired by our desire to save up for our round-the-world, backpacking honeymoon.

So as I walk this weekend, I’ll be walking my own quirky memory lane. Which also includes many, many Mercer trips from Queen Anne, where I once lived, to Madrona, where Mom once lived. Those cross-town treks date from before we knew Mom had Alzheimer’s disease. Sure, there had been some troubling memory lapses, but nothing out of the ordinary for a busy, not quite-60-year-old high school teacher with six grown kids and a growing roster of grandkids. Right?

Wrong. And she knew it, before we did.

I think I know the real reason I haven’t walked. It’s because of all the faces I know I will see. Though I’ve written and thought plenty of times about how many millions of families are living with Alzheimer’s disease, I’ve never seen a huge number of them in one place at one time. More than five million Americans with Alzheimer’s is a big, big number. But a little girl walking for her grandfather is a human being. As is a husband, walking for his wife. A son walking for his mother. A friend walking for her friend. A woman with Alzheimer’s disease, who might remind me of my mom.

There was a time when the last thing I wanted was to see all those faces, reflecting back to me my own loss and grief. And yet now I do: because I have come to understand that there is strength in numbers. Just by the simple act of walking side-by-side, we’re telling each other: I get it. I know. My family’s been there too.

Walking together, we can raise money for more research, support groups, education and outreach—just as, together, we persuaded the federal government to create the first-ever National Plan to Address Alzheimer’s Disease.

The local chapter of the Alzheimer’s Association predicts there will be twice as many people walking this year than there were a decade ago. The number of walks around western and central Washington has grown from four to ten.

I think I’m not the only person who is finally ready to walk.

If you’re feeling energetic, join us. If you’re feeling generous, contribute to the cause.

And here’s a postscript that means so much to me: I just learned that Her Beautiful Brain, the memoir I wrote about my mom’s long struggle with Alzheimer’s, will be published by She Writes Press in Fall 2014. More details as I have them!

 

 

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