Pandemic Mirror

2020-06-30T16:28:53-07:00Categories: brain, creative aging, family, featured posts, health & medicine, memoir, midlife, quiet, Uncategorized|Tags: , , , , , |

“When did my hair get so long?” I ask myself, as I look in the mirror. “And I look so  OLD!” I am 63. We are winding up Month Four of the pandemic. No. I’m not 63. I am seven, and I am winding up two weeks of being home sick with the mumps. I’m standing in front of the full-length mirror that hangs inside my parents’ bedroom closet door. When the door is open, there is plenty of light on the mirror, so it’s ideal for getting a good look at yourself, which I haven’t done in many days. One of my cheeks is puffed out like a popover. But almost more fascinating to seven-year-old me is how long my hair looks. Can it have grown so much since I last took a look at myself? I am also admiring my new pale blue, pearl-buttoned bathrobe, with its fake-fur collar. How did I, the third of six children (five at the time), acquire such a fancy robe? Was it a gift from my elegant grandmother, given to me because I had the mumps? Was I the only one of us who had the mumps? I don’t remember. What I do remember is what a novelty it was to look in the mirror and see only me: my brother and sisters were at school; my baby brother was taking a nap, or maybe he was with Grandma. And I didn’t look like me, pre-mumps. Never mind the puffy cheek: this was the second one to pop [...]

Love in the time of Chaos

2019-11-07T15:28:53-08:00Categories: brain, dementia, politics, Uncategorized, writing|Tags: , , , , , , |

What 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.  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. “Let love reign,” is the symbolic message of the [...]

My media adventures

2019-11-07T15:43:29-08:00Categories: brain, dementia, health & medicine, memoir|Tags: , , , |

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! As 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. I'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. I 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 [...]

Beyond the Trail

2019-11-07T15:46:19-08:00Categories: arts, brain, dementia, hiking, memoir, nature, reading, Seattle, writing|Tags: , , , |

  “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, dark—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 [...]

Diagnosis

2019-11-07T15:48:20-08:00Categories: brain, dementia, politics|Tags: , |

 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. I 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. The 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 [...]

The Accidental Lobbyist

2019-11-07T15:49:53-08:00Categories: brain, dementia, politics|Tags: , |

We 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 [...]

Why I Volunteer for Research, Part Two

2019-11-07T15:55:37-08:00Categories: brain, dementia, family, health & medicine, midlife|Tags: , , |

Although 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 [...]

Why I Volunteer for Research, Part One

2019-11-07T15:56:11-08:00Categories: brain, dementia, health & medicine, midlife, writing|Tags: , , , |

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. [...]

The Longest Day

2019-11-11T09:24:40-08:00Categories: brain, dementia, health & medicine|Tags: , , , , |

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 celebration. 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 [...]

Dementia-friendly World

2019-11-14T12:00:41-08:00Categories: brain, dementia, health & medicine, midlife, Seattle, urban life|Tags: , , , , , , |

 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 getting 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 [...]

Alzheimer’s Walk

2013-09-19T16:19:17-07:00Categories: brain, dementia, Seattle, writing|Tags: , , |

I 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 [...]

Holiday Dementia

2012-11-27T14:16:20-08:00Categories: brain, dementia|Tags: , , |

 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 [...]