The Battle Against Dementia: The Dark Descent of an Unlikely Victim
By Beth Macy
February 24, 2011
What happens when a beautifully sharp mind begins to unravel?
It's spring 2006, and a woman I vaguely recognize approaches me at a party, her auburn wig askew and a glass of wine wobbling in her hand. She announces cheerfully that, at 63, she has recently retired from the Virginia newspaper where I still work.
"I have dementia, in case you didn't know!"
I didn't know. In fact, I don't even recognize her until she lifts her wig to reveal a tamped-down mass of gray-brown curls. It's our paper's longtime copy desk chief, whose reign of terror over young reporters and clunky sentences is legend.
Lynn Forbish. The sight of that name in your e-mail in-box could turn your palms sweaty and your face red. No matter how many years you've logged as a journalist or how many awards you've won, a note from the Queen of the Copy Desk could bring you to your knees: "Never use five words when one will suffice—just don't make it one of your usual clichés."
She was from the old school of reporting: If your mother says she loves you, check it out—or Lynn just might do the checking for you, and you didn't want that. She crowed about doing the Sunday New York Times crossword in ink and scolded coworkers for minor infractions like turning on their desk lamps, claiming the light bothered her eyes. She was gruff and merciless, and on the rare days when she said she actually liked something you wrote, it felt better than a bonus check.
But on this day she is giddy, almost manic, and not at all uptight. The wig-wearing Lynn is so friendly that she invites me to follow her to her house (she happens to live next door to my babysitter, whose college graduation we're now celebrating), where she gives me a tour of her garden and asks me inside to look at her antique perfume bottle collection and Art Deco prints.
I expect Lynn's house to be as precise as her edits. But the piano where she once played Chopin waltzes from memory is piled with old mail and bills. Cartons of Febreze are stacked nearby in an apparently forgotten plan to mask the smell of an abandoned cat-litter box.
Lynn is in the early stages of Lewy body dementia, a degenerative brain disease that shares traits with Alzheimer's and Parkinson's. She didn't realize how confused she'd become until our newspaper, The Roanoke Times, switched computer systems the year prior and she kept botching the most basic functions. I later learn that a coworker once summoned the elevator to our third-floor newsroom, only to find Lynn standing inside, confused. She hadn't known which button to push.
But I know none of this at the time. So I'm astonished when Lynn starts to describe for me, in detail and with a copy editor's precision, what it's like to lose your mind. "Some days I can't remember whether my bra hooks in the front or the back," she says.
Her son and daughter-in-law have already taken her car keys away following a late-night collision with a street sign. The only thing left to lose is her house. "Where will you go?" I ask. Lynn looks down, rubs her hands together, and says she isn't sure. "Do you know?"
Then she cackles, as if it's all a joke. She takes my hand and pulls me into her bathroom, squaring my shoulders in front of the mirror. It's like we're best friends—only we don't know each other much outside of work, beyond occasional chats about my babysitter and our mutual love of gardening.
She takes off her wig again and, apropos of nothing, forces it onto my head, tucking my hair underneath. The new Lynn is happier, sillier, than anyone has ever known her to be.
But the bossy editor soon reappears.
"Write my story—before I forget it," she tells me. "This thing that's...damn...this thing." She can't conjure the word. "People need to know about this thing. Because so much of this is...it's wrong."
Lynn is no longer the terror. "This thing" is the terror. And as she has been about so many things before—before the Lewy bodies started to nibble away at her neurons and commenced turning them to goo—the Queen of the Copy Desk is right. People need to know.
A few years earlier: I'm taking my babysitter home when I run into Lynn. She's trimming a gorgeous, purple-leafed tree in the corner of her front yard. It's a smoke tree, known for showstopping white flowers that look like puffy clouds of smoke. I've long coveted the ornamental tree but haven't been able to find one to buy.
Lynn rattles off the store where she bought hers, the price, and even its Latin name: Cotinus obovatus. We agree that the tree offers more bang for the buck because its color spectrum shifts between blue-green, purple, and vibrant red, all punctuated by those ethereal, smoky plumes.
She offers to call me if she spots another one for sale, but for the next year or so we communicate solely for professional reasons and always by e-mail. She likes a story I wrote on a pair of teenage trash-diving brothers, but shouldn't I know by now that Dumpster is a brand name and therefore begins with a capital D?
Words—the right words—have always been Lynn's religion, her saving grace. It's been that way since she was a young single mother in the mid-'60s. She and her husband split up when her son and daughter were small, and she went to work first as a typesetter, then answering phones and writing obits for her hometown paper in Janesville, Wisconsin. For a time she worked four jobs at once so she could pay the bills.
Her anger tended to assert itself in unsparing, comedic jabs. In a newspaper essay about quitting smoking, she wrote: "I used to smoke three packs a day. Now I chew three packs a day. Gum, that is. I hate Doublemint gum. I hate people." Later, working as a copy editor in St. Petersburg, Florida, for the Evening Independent, she also reviewed nightclub entertainers, once writing that Milton Berle needed to get a new shtick, another time excoriating Neil Diamond for his "annoying, gravelly voice."
She played bridge with a vengeance, traveled the world, and once brandished a red cape inside a Mexican bullfighting ring. (The bull fortunately just stood and stared, but in a photograph taken moments before its release, Lynn looks regal, gutsy, and downright glorious.) She collected antiques and designer clothes, and gave money to medical charities at Christmas—but only those dedicated to curing illnesses she thought she might get. Lewy body disease, thought to be the second most common form of dementia after Alzheimer's, was not on the list.
In 1993 she applied for the chief copy editor job at my midsize newspaper, to be closer to Larry, her investment-counselor son, and his wife, Katie; they were expecting their first child. The editors were lucky to get someone with her experience, and she didn't hesitate to remind them of it. If an airplane crashed in the nearby Blue Ridge Mountains, it was Lynn's job to keep copy flowing at night after the daytime editors went home. She thrived on deadline adrenaline, over the years wresting reporters from their sleep to demand attribution of a fact or to double-check the spelling of a name.
But sometime around her 62nd birthday, the Queen's words begin to falter: "Cafeteria" comes out as "mess hall." At first, miscues and minor mistakes are scattered, like flickering lights in a storm. And because she's the Queen, her coworkers on the copy desk bow down, patiently reminding her of passwords and copy-flow procedures. Their worry grows, though, each time she bungles a phone-call transfer or forgets a Healthy Choice dinner that hours later someone else finds congealed in the company microwave. One editor even phones Larry to express his concern.
But when Larry sees his mom, she still seems sharp, as she is much of the time. He suggests ginkgo biloba supplements, and mother and son continue writing off the lapses. It's not Lynn, it's the technology: damn phones, damn computers, damn microwave.
When I arrive home one day in 2004 and hear her voice on my answering machine, my stomach sinks. I imagine I've missed a critical fact in a story. But no, Lynn was out shopping that morning and ran across a smoke tree. There are two left at the nursery, and they're a steal, on sale for 20 bucks. If I still want my Co-ti-nus o-bo-va-tus, she says, hyperenunciating the Latin name—I'd better get out there quick.
It had been a year since we last discussed the tree.
In early 2007 I finally have the time to call Lynn about interviewing her, and she's thrilled. She remembers asking me to write an article for our paper—"I want to help people," she says repeatedly—but by now her recall of dementia statistics, let alone Latin tree names, is fading.
Gone, too, is her beloved house. She's living in a small suite in an assisted-living facility, a move recommended by a geriatrics team after daughter-in-law Katie reported finding Lynn's medicine mixed up in the cat food, cat food in the ice cream, and cat feces all over the basement floor. Lynn can no longer manage food preparation, not even the making of a simple sandwich, and has lost 40 pounds.
She's already reading on a fifth-grade level, with spatial abilities scoring in the mental retardation range. (All throw rugs on the carpet must be removed because they trip her up—she doesn't know she can step on them.) Larry is mad at himself for not having her tested earlier, when drugs such as Aricept might have slowed her decline. Her diagnosis "shot the hell out of my denial," he tells me later.
Unlike many American families, the Forbishes had discussed long-term-care insurance before they found themselves in crisis, but Lynn had rejected Larry's advice to buy it, even though she had a family history of dementia. She planned to buy the insurance after she retired, not by the often recommended age of 59. (A 2006 AARP survey confirmed widespread misperceptions about long-term care, reporting that 52 percent of people 45 and older wrongly think Medicare will pay for assisted living; another 18 percent weren't sure.)
These are probably not the facts Lynn had in mind when she asked me to write her story, but after learning that her facility costs $3,900 a month, they are foremost in mine. When I arrive with a cup of her favorite coffee, she jokes about her condition: "Hey, maybe I'm just making all this dementia stuff up so I can be waited on!" she says, giggling.
She introduces me to her boyfriend, Don, a retired lawyer who lives down the hall and has a different form of dementia. "He still drives!" she brags. "And he has a car!" Never mind that they recently got lost on their way to the Cat Fanciers' Association show and drove around Roanoke for three hours, without seeing a single Persian or Egyptian Mau.
She shows me her massive movie collection but complains that neither she nor Don can operate the VCR, and she can't recall her favorite actor's name. "It was the guy who played Columbo.... No, it was, it, it, it..."
It was another actor named Peter: Peter Sellers. She thinks of it later, in the middle of another conversation.
Parkinson's-like tremors have developed in her hands, a common symptom of Lewy body, and occasionally Lynn sees people who are not there: A pair of girls are in her room and she's worried they might get hurt. She frantically summons a personal-care assistant, who phones Katie, who calms Lynn down by telling her, falsely, that policemen are on their way to rescue the girls and all is well.
Their relationship was once strained several years ago after Katie's 3-year-old daughter returned from a visit to Nana's spewing four-letter words. But now she and Lynn talk for an hour on the phone every night. Lynn discusses her boyfriend's fascination with John Wayne movies (which she can't stand), and Katie relays the national and world news of the day. Sometimes when Lynn is agitated, she begs Katie to phone their relatives—Lynn's daughter in Wisconsin, a sister in Texas—to remind them that dementia runs in families and they need to be vigilant.
Sundays are officially "Nana days": The whole family goes to church and then to lunch at Lynn's favorite spot, the Olive Garden. Lynn tries eating her fettuccine with a knife, and when Larry casually replaces it with a fork, she laughs and carries on eating. The tart tongue is in retreat, the old hurts vanished.
During the spring of 2007, I visit Lynn weekly. One time we read over her old newspaper clippings, another we go through her movie collection. She asks what it was like to cover the recent shootings at Virginia Tech, less than an hour away. It was horrific, of course, just the kind of story Lynn would have excelled at coordinating—the long hours, the last-minute page changes, the late-night phone calls to verify a detail.
Reporters were so stressed afterward, I tell her, that our editor actually hired massage therapists to come into the newsroom. I expect her to find the massages amusing, coddling even, but Lynn shudders and tells me she's relieved to have been far removed from the biggest story to hit our region in years.
We drive to the Olive Garden, where she stares at her steaming plate of ravioli. Finally I realize that she's waiting for me to cut up her food. She asks if we can order wine with lunch and I say, Why not?
Halfway through our meal, she brings up the subject of her death: "I have no idea what happens to me when I go. But, see, now I don't worry about that so much. I guess it's a blessing."
She asks about friends at the newspaper. She reads only leads and headlines now; she can't follow a story if it jumps from one page to the next.
On the drive home she's tired, though still quite agreeable. She has trouble finishing any sentence, so mostly she laughs. I let go and laugh along with her.
At a stoplight, she looks over at me, her eyes beaming, and says: "If you ever wanna get married someday, let me know."
She giggles, then I giggle, and then we're both doubled over, clutching our bellies.
Why not? I say.
That would be our last visit.
During the summer, Lynn's family moves her to a facility in her Wisconsin hometown, to be closer to her daughter and several other relatives; they also expect her money will hold out longer there. In a couple of weeks, she'll turn 65.
Katie fills me in occasionally on her progress, which is...nonexistent. Instead, over the next two and a half years there are urinary tract infections and emergency room visits.
Before she becomes immobile in early 2010, Lynn enjoys wandering into other patients' rooms to socialize and watch TV. Though she has lost the use of language, she still loves laughing with people.
Family members aren't sure when to call in hospice. "I'm ready for her battle to be over," Katie tells me after one early spring hospitalization. "But Larry's not. When she recovers from a hospital stay, he'll say, 'Thank God she's gonna be okay.'"
Her advice for others? "Write your medical directive while you're still young."
When I explain that I'm preparing Lynn's story for publication in a magazine, Katie reminds me that it was one of Lynn's last lucid wishes that her story might help others. "It's all she ever wanted—to matter."
"That's not true," she adds, chuckling. "She also wanted to be Jackie O."
April 2010: I'm at the end of a yearlong journalism fellowship at Harvard, studying care for the elderly, when Katie e-mails me the news: The Queen has passed.
Carol Lynn Forbish, 67, died the same way she lived—bucking expectations. Back in 2006, doctors predicted she'd die in three to five years, probably from a painful infection, curled up in a fetal position.
But her last acts of will, I'm proud to learn, were vintage Lynn: Summoned to participate in a crafts class last winter, she refused to roll balls of yarn. When music therapy was offered instead, she couldn't sing or talk—but her feet tapped in time.
Down with the yarn, up with the Beatles.
By spring she refused all food, clamping her mouth tight and turning her head, pretending to fall asleep. As Katie tells the story: "By God, she was gonna go her own way. She wasn't gonna take any crap from death."
Right now more than 10.9 million Americans are caring for someone with Alzheimer's or dementia. Worldwide, the number of Alzheimer's cases is expected to double by 2030.
And yet our culture often tells us that old age is something to run from rather than prepare for or discuss—until we get a jarring midnight call from a policeman, as Larry Forbish did in 2006: Your mom crashed her car, she says the street sign "jumped out" in front of her; please come and take her home.
I like to think that's the story Lynn meant for me to tell, the one that ends with each of us asking our own aging parents: What are your plans? How will we pay? What can we do?
As I write this, the smoke tree in my front yard back in Virginia is 15 feet tall, gorgeous enough that strangers sometimes stop to ask for cuttings. I think of Lynn and happily oblige.
It's high summer now, and the white plumes have just turned sepia. When a breeze kicks up, one by one they detach and drift into the ether, and before I know it the tree has transformed again, each rendering more beautiful than the last.