Jason Olson, Deseret News
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.
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