▶ Alzheimer’s, Awareness and ‘Still Alice’
My maternal grandmother lives in my memory as two distinct images. Two distinct people, really.
The first: She’s coming off a plane, and she’s in a pillbox hat, a tailored suit and white gloves. That was how she dressed to fly, back in the days when people actually dressed to fly. We’d meet her at the airport, then drive home in a car suffused with Jungle Gardenia, which wasn’t just her scent. It was her armor and ecosystem, the way she told the world and reassured herself that she was a proper lady.
The second image: She’s on the couch in our TV room. Her blouse has come undone. So have her slacks, which are wrinkled and smudged. She’s spilling out of everything and she’s oblivious, a dazed, haunted look in her eyes. If she’s wearing any Jungle Gardenia, I no longer smell it.
These images are separated not just by years but by illness. My grandmother, Kathryn Owen Frier, developed Alzheimer’s. It turned a fastidious woman with a fiendish talent for crosswords into a slovenly one who couldn’t figure out a stoplight. I remember how mortified I felt for her, how quickly I turned my eyes away. And I remember how awful I felt for having that reaction.
She died more than a quarter century ago. For a long time afterward, I rejected any impulse to write about the way she went, worried that I’d somehow be dishonoring her.
But the world is different now. Much of the unwarranted shame surrounding Alzheimer’s has lifted. People are examining it with a new candor and empathy.
If most Oscar handicappers are correct, the next Best Actress statuette will go to Julianne Moore for her heartbreaking work as a university professor battling early-onset Alzheimer’s in “Still Alice,” to be released nationally next month. And while Moore isn’t the first star to shed a light on the disease . Judi Dench in “Iris” and Julie Christie in “Away From Her” also did so . her performance comes amid other intimate portraits of the toll that Alzheimer’s takes.
A new documentary, “Glen Campbell: I’ll Be Me,” chronicles its recent impact on the singer who made “Rhinestone Cowboy” a megahit in the 1970s.
And one of the most acclaimed novels of 2014 is “We Are Not Ourselves,” by Matthew Thomas, which hinges on an agonizing case of Alzheimer’s. The book became an instant best seller.
“As baby boomers approach their 70s and Alzheimer’s disease becomes increasingly commonplace, more and more fiction writers are attempting to reach into that obscure space,” noted Stefan Merrill Block in The New Yorker last August.
Block himself reached into it for his first novel, “The Story of Forgetting,” in 2008. The novel “Still Alice,” on which the movie is based, was published around that time and went on to sell more than a million copies.
Its author, Lisa Genova, told me that its success underscores not only how many families have been touched by Alzheimer’s but how many had been trapped in silence. “Any disease of the brain has a stigma,” she said. “It’s not like the heart or the kidney. This is something that’s wrong with you.”
After “Still Alice” came out, she was struck by all the real-life stories that people suddenly shared with her. Thomas had the same experience when he promoted “We Are Not Ourselves.”“I was surprised by how willing people were to be vulnerable,” he told me. Alzheimer’s was something that they desperately needed to talk about.
According to the Alzheimer’s Association, an advocacy group, the estimated number of Americans with the disease will rise from more than five million now to as many as 16 million in 2050, and the cost of caring for them and older Americans with other forms of dementia could reach $1.2 trillion annually.
Angela Geiger, the association’s chief strategy officer, calls Alzheimer’s “the unaddressed public health crisis of this decade.” And she told me that while there have been significant increases in federal funding for research, current spending doesn’t adequately reflect the disease’s status as the sixth leading cause of death in this country, one for which there’s “no treatment that slows the progression.”It’s a hellish riddle, eroding the identities of those it afflicts and depriving us all of our cherished illusions of control. “Alzheimer’s disease is the opposite of modern life,” wrote Thomas, whose father had it, in Time magazine. “It’s the ascendancy of entropy and chaos.”
It’s not perfumed. It’s not gloved. But it’s what happens to many people and will happen to too many more, especially if we don’t stare unblinkingly at it.
“If we’re shy about it, then we don’t have a sense of urgency,” Genova said. We’re conquering the shyness. With the urgency, we have a ways to go.