When Sharon Monaghan turned 50, she got just what she wanted: a sailboat ride across Elliott Bay followed by a summer birthday bash in her own flower-filled backyard with 30 of her closest friends. Some had flown in from other states. A few hadn’t seen her in years. Sharon wore a birthday tiara. She smiled all night and told a lot of stories. Her friend Priscilla, who hadn’t visited Seattle in quite a while, noticed that Sharon told her the same story three times over the course of a few hours. No one can remember now what the story was. Maybe it had to do with Sharon’s busy hospital job; or maybe it was about Sharon and her partner Cathie Cannon’s teenage daughter, Mackenzie. But to this day, Sharon and Cathie still get a good laugh out of what Sharon said next.
Priscilla asked Sharon if she wanted to be told when she was repeating herself.
“Fuck no,” Sharon deadpanned.
What Priscilla didn’t know was that this repetition problem had been going on for months. She didn’t know that Sharon and Cathie had worked out a secret signal: If Cathie held up two fingers, that meant Sharon was telling a story for the second time. Three fingers meant it was the third time. The night of the birthday party, Cathie hadn’t always been right next to Sharon, ready to signal.
On that lush July evening in 2007, Sharon and Cathie still believed the repetition might be an aftereffect of drug therapy and radiation Sharon had undergone when she was treated for breast cancer six years earlier.
But then other, more alarming things started to happen: strange lapses in memory and judgment; odd breakdowns in the kind of problem-solving skills that were essential to Sharon’s high-octane career as administrative director of ambulatory services and primary care at Virginia Mason Medical Center and, later, as director of pain and anesthesia at Seattle Children’s Hospital.
One day in 2008, Sharon went in for neuropsychological testing. She rode her bike to work that morning, forgetting that she had planned to drive so she could get to the clinic more quickly. She took a cab to her appointment. After the tests, she was upset because she was sure she hadn’t done well. So she just started walking. She walked from Aurora Avenue in Wallingford all the way to the University District. Finally, she called a friend for a ride, since she knew that Cathie, a nurse at Harborview, would not be able to leave work to come get her. By the time her friend showed up, Sharon was beside herself, completely flummoxed by how poorly she had managed the events of the day.
Then came the terrifying moments when she suddenly didn’t know where she was. On Memorial Day weekend this year, Cathie, Sharon, and Mackenzie were hiking in the Lake Wenatchee area, near the cabin they’ve owned for 25 years. Sharon told her partner and her daughter she was scared because she didn’t recognize anything, not even the cabin, and definitely not the trail, even though they’d hiked it several times in the past. When Cathie asked Sharon where she thought they were, Sharon guessed the grassy, low-lying Magnuson Park on Lake Washington in northeast Seattle, even though they were deep in the forest with no lake in sight.
Despite the confused lapses, Sharon was so young and fit that specialists continued to theorize that medication and radiation could be to blame. There was also some speculation that she was overstressed by the demands of her job. Or maybe menopause was the culprit. But Sharon’s internist at Virginia Mason Medical Center, Minori Yoshioka, wasn’t convinced by any of those theories. Cathie remembers Dr. Yoshioka saying to Sharon: “This is just not right at your age.” In September 2009, Dr. Yoshioka ordered more neuropsychological testing, a CT scan, blood work, and, finally, a referral for a positron emission tomography (PET) scan, which would produce slicelike images of Sharon’s brain in bright primary colors, revealing how well cells in various brain regions were working by showing how actively the cells were using sugar or oxygen.
Sharon’s PET scan confirmed what the doctor had suspected, but dreaded telling her 52-year-old patient: Sharon had probable younger-onset Alzheimer’s disease, cause unknown.
Devastating news. And yet, Cathie said, it was vitally important to know, to get them going right away on a path to protect Sharon. As health care professionals, Cathie and Sharon understood the importance of jumping into action following Sharon’s diagnosis.
People with younger-onset Alzheimer’s disease are uniquely vulnerable on a number of fronts. For example, they could be fired for poor performance before a diagnosis confirms that they have a legitimate medical disability. They may not have long-term care insurance. They’re years away from eligibility for Medicare. Their children are too young to be major sources of support. Their friends are other busy middle-aged people.
Most of us think of Alzheimer’s disease as something to start fearing when we get to be about 75. But for reasons mystifying to experts, younger-onset Alzheimer’s is on the rise: At least 200,000 Americans currently living with the disease are 65 or younger. Often, like Sharon, they start experiencing symptoms before they’re 50, when they are at the height of their careers, have teenage children (Mackenzie is now 19), aging parents of their own, mortgages—every kind of financial and emotional commitment.
The umbrella term for loss of or decline in memory and other cognitive abilities is dementia, and Alzheimer’s disease is the most common type, accounting for 60 to 80 percent of cases. Alzheimer’s usually begins with a worsening ability to remember new information, followed by a gradual decline in cognitive and functional abilities. It is progressive and irreversible. It is not a normal part of aging, although age is typically the greatest risk factor. Researchers believe the development of Alzheimer’s is related to a slow buildup of proteins known as plaques and tangles in the brain.
When I spoke to Sharon and Cathie, they were about to drive down to Portland to pick up their daughter from her first year at Lewis and Clark College. “Mackenzie and I root each other on, try to be positive, do the best we can, give her all the love we can, especially when she’s grouchy,” said Cathie. She insists Sharon has always been Mackenzie’s favorite—the silly, irreverent, fun mom; “the spontaneous, joyful person who is going away and it’s hard to talk to friends about it.” When she was 25, Cathie lost her own mother to lung cancer, so she understands. Their lives are among the millions changed forever by an illness that is now routinely labeled an epidemic.
Surprisingly, research and funding have not kept pace. Although President Obama signed the 2011 National Alzheimer’s Project Act (NAPA), mandating increased federal planning and funding, and although Alzheimer’s disease is the sixth leading cause of death and the only one of the top 10 causes still without a way to prevent, cure, or even slow its progression, Alzheimer’s research receives roughly $500 million in federal funding per year. That may sound like big bucks, but it’s one-eleventh the tax dollars that go to cancer, which affects 12 million Americans compared to Alzheimer’s current 5.4 million.
But here’s even more disturbing news: While deaths from cancer, heart disease, stroke, and HIV are all dropping, in some cases dramatically (between 2000 and 2008 heart disease decreased by 13 percent, stroke 20 percent, and HIV 29 percent), deaths from Alzheimer’s disease soared by 66 percent during the same period.
This angers Cathie Cannon. “The American public got up and yelled in the 1960s and ’70s about heart disease and cancer,” she said, and she believes it is time to do the same for younger-onset Alzheimer’s. It’s why she’s willing to share what she and Sharon are going through.
But meanwhile, there is the day-to-day work of what they’re going through, the Sisyphean slog of learning how to live with a slow and insidious illness. People who are unaffected by Alzheimer’s disease can turn away from it, bemoan its hopelessness, and toil a little harder on the crossword puzzle. They can write it off as a passive fading away. But in fact Alzheimer’s is an illness that, especially in the early stages, often triggers depression, anguish, and volatile moods. Sometimes, like a needle stuck in the groove of a vinyl record, it triggers haunting memory loops.
Sharon’s recurring loop is a pretty tough one.
During one of our meetings, she asked if I recalled the Goldmark family, murdered on Christmas Eve 1985 at their home in Madrona. Even though the event happened nearly 30 years ago, few who lived in Seattle at the time can forget that devastating loss of a prominent Seattle family. David Lewis Rice, a member of an extremist right-wing group, mistakenly believing attorney Charles Goldmark to be Jewish and Communist, bludgeoned and stabbed Goldmark, 41, his wife, Annie, 43, and their two sons Derek, 12, and Colin, 10. Annie died at the scene. The others were taken to Harborview Medical Center. Colin died soon after and Charles died 16 days later, but Derek hung on for 39 days. Sharon, then 28 years old, was the nursing manager of the neurosurgical Intensive Care Unit. When friends came to visit, it was Sharon’s job to give them an update. One boy in particular demanded to know just what she was doing to save his friend. It was tough to face his question, especially in the glare of the news media, whose interest in the case was intense. She felt drained, coming to work day after day, maintaining a calm demeanor, hiding the emotional toll.
A few minutes after she told me all of this, she brought up the Goldmarks again, as if for the first time. Again she told the story of the boy who asked her how she was going to save his mortally wounded friend.
Of all the things to have to remember. Over and over and over.
One of the reasons Sharon brought it up is because of the possible connection between her Alzheimer’s disease and the stress spikes that were an unavoidable part of her work for nearly 30 years. This connection between stress and Alzheimer’s was the focus of one of the signature studies at the University of Washington’s Alzheimer’s Disease Research Center, where Sharon is enrolled as a possible research candidate (as am I; my mother died of younger-onset Alzheimer’s in 2006, which motivated me to volunteer as a control subject).
Advancing research is vital. But quality of life is important, too. The responsibilities borne by primary caregivers to people with younger-onset Alzheimer’s disease can be overwhelming. “You can feel people pulling away,” Cathie said. “It is a very isolating illness.” But, she added, you don’t have a choice but to cope. And ask for help. And so many of their friends do really want to help. Cathie and Sharon have joined a support group, which helps them feel less alone. Sharon’s days are now carefully orchestrated by, as she put it, a “whole boatload of people.”
And to her great surprise, she has become an artist. I watched her work one Wednesday afternoon in the skylit studio of the Frye Art Museum on First Hill. “I love this paper,” Sharon whispered. “Because it helps hold this.” She gestured with her brush at the bright stripes of watercolor paint on her paper, which was indeed beautiful: thick, eggshell white, not too absorbent. Sharon was one of a dozen watercolorists working intently that day. The room was quiet. Teacher Tamara Keefe circulated, commenting gently on their work.
“Your color’s beautiful,” she said to Sharon. “You were just willing to see what it looked like, to see where it took you.”
Sharon was painting at the Frye as a participant in the museum’s Here:Now program. Developed in partnership with Elderwise, which offers arts enrichment programs for people with dementia, and with the regional chapter of the Alzheimer’s Association, Here:Now is a six-session class pairing conversation-based gallery tours with studio artmaking experiences for people with dementia and their care partners, now in its second year at the Frye. For Sharon, it has been a haven. Or, as she calls it, “a way to be somewhere else.” Cathie’s work schedule made it impossible for her to attend, so two friends took turns going with Sharon for six Wednesdays. None of them were quite sure what it would be like. All discovered benefits they never expected.
Sharon’s friend Mary Haskin said when it was her turn, she would look forward not only to going to the Frye with Sharon but to talking about it before and after. Here:Now became such a positive highlight in Sharon’s week that it spilled over and gave Sharon and everyone around her a huge mood lift. Mary said Cathie and Mackenzie told her that at home during the evenings after the program, “Sharon was the most clear of any time. And I think that, for Alzheimer’s patients, that is a true gift. To have that time with friends and members of the class and just have it be totally free and fun and there’s no pressure.”
University of Washington geriatrician Lee Burnside is so intrigued by Here:Now that he secured funding for a research study. His team is interviewing 50 to 70 Here:Now participants to see how many are reporting the kinds of benefits described by Sharon and her caregivers. The study will conclude in spring 2013, and, although Burnside declines to speculate in advance about results, he is very moved by the overwhelming support for Here:Now. He pointed me to a New York University study of the Meet Me at MoMA program at New York’s Museum of Modern Art, which is the acclaimed prototype for Here:Now. NYU study interviewees reported “positive changes to mood both directly after the program and in the days following the museum visit. Caregivers reported fewer emotional problems, and all but one person with dementia reported elevated mood.”
“Elevated mood” is a precious commodity for people with Alzheimer’s disease. The Frye’s waiting lists for Here:Now are so long that, if the museum had the funds, it could easily expand the program, according to Frye education director Mary Jane Knecht. She also organized a packed one-day conference called Art, Creativity, and Living with Dementia in partnership with Elderwise and the local Alzheimer’s Association chapter.
“Culturally, we’re getting there,” said Keri Pollock, communications director for the Alzheimer’s Association’s Western and Central Washington State Chapter. She praised the Frye’s 2010 conference as a catalytic event. Since then, new programs for people with dementia have been cropping up around the Puget Sound region, ranging from creative writing groups to monthly get-togethers sponsored by the Greenwood Senior Center and hosted by Mae’s Phinney Ridge Cafe.
Meanwhile, Sharon is continuing to create art through the Elderwise adult day program. It is not how she thought she’d be spending her days at this time in her life. But while the search continues for a cause and a cure for Alzheimer’s disease, Sharon and Cathie and 5.4 million more Americans and their caregivers have to get up every morning and find ways to live with an unforgiving illness.
Art—looking at it, talking about, making it—is powerful medicine, one that gives Sharon a way, however fleeting, to live peacefully in the moment, no remembering required. Even in its very name, Here:Now is all about living in the moment. Of twirling a feather in your hand after viewing and talking about a painting of a flock of ducks. Or choosing, as Sharon did, to cover one corner of her beautiful white paper with an elegant tangle of bright swirls and shapes. The rest of the page she left blank.