HOLLADAY — Not long after her diagnosis, Kathryn Romney and her husband, Leonard, decided that the terms "victim" and "sufferer" were too grim. And "patient" wasn't quite right either. They settled, instead, on a different word.
"I'm a recipient of Alzheimer's disease," Kathryn says.
Kathryn is a fan of the well-chosen word. She used to be a high school English teacher, and for years in her room at West High there were always strings of vocabulary words taped to the wall, a new word each day.
When she says recipient, she means to disarm you and maybe make you smile, but mostly she wants to think about her disease in a new way. This is the message she hopes to convey in her new post on the National Alzheimer's Association Early-Stage Advisory Group: There is life after diagnosis, and talking about the disease is better than keeping silent.
"I'm on a quest of openness," she says.
As one of just 15 advisory group members from around the country, she will work to educate others and rally support; she also will represent Utah, which has the second highest per capita prevalence of Alzheimer's in the nation.
According to the National Institute on Aging, the chance of developing the disease doubles every five years beyond age 65; by the time a person is 80, the odds of having it are more than one in five; every 70 seconds there's a new case diagnosed. There is, as yet, no cure. There are, as Leonard notes, no Alzheimer's "survivors."
Perhaps, he says, this is one of the reasons why there is still a stigma about the disease. Perhaps this is why he and Kathryn get so few dinner invitations now.
Kathryn was diagnosed with early-stage Alzheimer's a year ago, at age 67, following brain scans and eight grueling hours of tests. Despite the rigor, though, it's a diagnosis that's not 100 percent certain. To be certain, at least for now, you need an autopsy.
"And we didn't have time for one of those," Kathryn says with a grin. "We had lunch plans."
To be in the early stages of Alzheimer's means being aware of everything you might eventually lose: names and then faces, concentration and then judgment, language and maybe even the ability to smile. To be in the early stages means you can sit in a caregiver support group and see your fate approaching.
Leonard attends bi-weekly caregiver meetings at the Utah Alzheimer's Association and Kathryn chooses to also attend, listening as the caregivers around the table voice their frustrations and sadness, and celebrate an occasional small victory.
It's a difficult recitation, but Kathryn wants to be there, acknowledging that "there will be many times down the road when I'll be talked about and not know it."
One woman explains that she has recently, with mixed emotions, put her husband into a care facility. Another woman says her husband no longer recognizes their son but at least can still shower by himself. At the other end of the table, a man introduces himself and his wife. It's his first meeting.
"My wife has memory loss," he tells the group, then adds that he can't bring himself to use "the word." Next to him his wife is crying. "We felt like it was a bullet being shot at us," the man says of the disease whose name he can't yet utter.
Later, Kathryn makes a point of talking to the couple, and makes plans to get together to help them navigate the journey ahead.
Kathryn describes her own diagnosis as "a board to the head, with a nail in the board." Just a few years earlier, she and Leonard had been LDS Church mission presidents in Russia, where, as Leonard boasts, Kathryn immediately mastered the Moscow metro system and went on to set up a service project in hospitals and prisons. But on a subsequent church mission to Belgium, to help monitor human rights and religious freedom in Europe, Kathryn began to have problems. She couldn't remember how to attach files on their computer. She couldn't follow a series of instructions; her mind wandered.
It was as if her thoughts were a string of lights, she says, and every so often one of the lights simply went out. The Romneys were sent home from Belgium so that her doctors could try to figure out what was wrong.
Although the diagnosis was a blow, Kathryn had already made her peace with it a few days before, after a dream in which she felt she had nearly succumbed to evil forces but was then infused with light. The message: "You have wonderful grandchildren to take care of and you've had a perfect life."
The next week, although they could have easily kept the diagnosis a secret, Kathryn and Leonard stood in front of their LDS ward and told the congregation her news.
Now, a year later, Leonard is busy helping raise money for the Alzheimer's Association, and together they're lobbying Utah's congressional delegation to increase the national research budget for Alzheimer's and to change Medicare rules to reimburse the cost of early-stage diagnostic procedures.
Early detection is important, says Utah Alzheimer's Association executive director Jack Jenks, because early intervention "translates to making those years more productive, functional and happier" — with the help of symptom-reducing drugs, brain fitness workshops and behavioral counseling, as well as help for caregivers to avoid the triggers that make symptoms worse.
Although it might seem counterintuitive — wouldn't anyone rather postpone knowing such bad news? — Kathryn feels lucky for the early diagnosis, and knows she's lucky to have Leonard. Still, she says, "I'm not blind to the fact that this whole thing won't be easy."
That's why she took to heart her doctor's advice: "If there's anything you want to do, do it now." Eat good food, travel, run. So they've been to the Middle East and the East Coast, and have recently returned from an Alaskan cruise. In a few weeks she'll run a 10K. She and Leonard volunteer once a week at the Huntsman Cancer Institute. She can sometimes be found whooping it up on the rope swing in her back yard.
In a fit of downsizing in 2005, as they got ready to move to a condo, Kathryn threw away a box of student essays. She didn't realize then, she says, how important those old papers would be to her in 2010, how they would be a link to a version of herself that is slipping away.
Not that a person can keep everything they've accumulated over the years. Life is always about loss as much as it is about trying to hold on, and Kathryn knows that. But the box still makes her a little sad.
She mentioned it the other night at dinner. I had invited her over because my son and his wife were in town. They had both been Kathryn's students, remembering her for the gentle way she had taught them the tedious rules of grammar, the enthusiasm she had for vocabulary words and literature, the letters she had written Tyler when he was heartsick over a pretty, brown-haired girl. Memory is not just a one-way street.
We talked about her four children, about travels and grandchildren. It took us a while to get around to talking about Alzheimer's. Maybe we were a little afraid to bring it up, to use the word. But then Tanya asked Kathryn what it felt like to have the disease.
Kathryn smiled and leaned forward. In the year since her diagnosis, she said, this was one of the few times anyone had asked. It was a relief, she said, to be able to talk about it.