Jim's sister, Sandy Stratton, 51, who lives in Connecticut, knows all about the disease's progression. She took care of their mother and older brother in their final stages. "In both cases, we found out when they were fired from their jobs," she said in a phone interview. Every few months brought new challenges, she recalled, as her mother would forget a different skill, such as how to get in the bath tub or the car.
"They can't tell you. They lose the ability to speak long before they lose understanding," she said. And while her mother remained loving and cooperative, her brother Bruce grew aggressive and difficult to handle. "It's very complicated when they're young men," she said.
On the phone, she still converses normally with Jim. But, in a short visit this spring, she noticed how he repeated the same questions constantly and had no sense of the passage of time. He talked to her about being afraid for his family, for the children, and of not being the provider.
"He's handling it very practically," said Stratton, who's not celebrating birthdays until she feels her own risk has passed. She and her sister have opted not to get tested for the Alzheimer's gene. "It would change too many things in your life," she said.
Her voice broke as she described their Navy veteran father's funeral earlier this year, when the chaplain presented Jim with the flag from the coffin.
"I'm standing there looking at him, and now we're starting to say goodbye to him," she said. "It's not one day. It's years. It's day after day after day."
All caretakers go through the same process, according to Carol Gurioli, family program manager for the Southeast Virginia Alzheimer's Association. "There's a continuing accommodation to the losses. ... The main difference with someone involved with younger onset is that there are other, additional losses that pertain to their youth and where they are in their life's journey."
Spreading the word
The Garners made the decision to be open about the disease, not only for themselves but to spread awareness. "Jim's family didn't talk about it. That's not the way a close family is going to survive," Karen said firmly. "We've had some very difficult conversations with the children. It has been just heartbreaking sometimes." The couple has become involved with the local Alzheimer's organization and has lobbied in Washington for more research dollars.
Mindful of their children's risk, they tried to enroll Jim in a clinical trial soon after diagnosis. But Duke University Medical Center turned them away because, at the time, Jim was 49, just a few months shy of the trial's age 50 cut-off. He said intently, "We want them to be able to slow it up." Karen countered, "No, honey, we want to find a cure." Referencing his situation, he replied patiently, "They can't do that now. It's like taking a scar off."
"You've become conditioned," Karen shot back in frustration, before adding apologetically, "You get so weighted down, you just lose hope. It sucks the hope out of your body."
How Karen copes
At first, she fretted constantly that the children's lives would be ruined, how they wouldn't have the life that she and Jim had planned for them. "You have the vision in your mind of being the perfect parent. It has forced me to reevaluate," she conceded, crediting her parents in North Carolina with helping her maintain perspective.
Her father, Ken Hagan, a former Marine and retired city manager, has learned everything he can about the disease. He constantly reassures Karen of his support, and has become an advocate.
"It's something you don't expect, but all families are faced with challenges. It's something we're going to have to deal with," he said. Hagan believes that once the public and politicians learn more about it, the government will steer more funds to Alzheimer's research. "It's going to affect a heck of a lot of people. I go back to what has always happened in this country; when it starts hitting home to a lot of people —- whether with AIDS, cancer or polio — the politicians act; I think the process has started."
He credited Jim for how he is handling the symptoms, and said the children have accepted their increased responsibilities at home. "They're a couple of normal kids. They both know their dad has a disease," he said.
While Jim remembers his mother and the beginning of her decline and withdrawal into herself, he didn't see her regularly in her later stages. Calm and unruffled by nature, he said, simply, "You can't predict it," and tried to reassure Karen by telling her that in a few years the children will be helping her.
Karen, meanwhile, has developed her own coping mechanism.
"I have to separate myself emotionally. I have to treat it like a business," she said. "I can't sit around crying all day. It will eat you alive if you look at what I won't have. I have to become this robot to deal with the bills, the taxes, the house and raising the kids."
She added, "Young kids keep you from dwelling. They're so much more able to accept the way people are, 'this is how he is today.' … I fight it. Where's the man I married, my best friend, the Jim I know and love?"
•EASE: Early Alzheimer's Support & Education Program, http://www.alz.org/seva/in_my_community_16027.asp. Early stage/early onset/early memory loss support groups meet in Newport News at 11:30 a.m. on the second Tuesday of each month. The groups are for those diagnosed and their caretakers. Call Carol Gurioli, 800-272-3900 or 757-459-2405, email firstname.lastname@example.org for information.
•The Center for Excellence in Aging and Geriatric Health, CEAGH, in Williamsburg, conducts clinical trials in Alzheimer's disease, http://www.alz.org/trialmatch. 757-220-4751.
Want to help
• "Memories on Display" Art Event is from 5:30 to 7:30 p.m. Friday, Sept. 28 at the New Town Art Gallery, 5140 Main St., Williamsburg. Artwork is by Williamsburg residents who participated in the Making Art Program for those with memory loss. Appetizers and wine served. Contact Marjorie Hilbert, 757-345-6977. The event is free, but donations are requested for the Walk to End Alzheimer's on Oct. 27.
• Local Alzheimer's fundraising walks, with 8:30 a.m. registration/10 a.m. walk: on Saturday, Oct. 20, at 1051 Loftis Blvd, Port Warwick, Newport News; and Saturday, Oct. 27, at 401 N. Boundary St., Williamsburg.
For information and to register in advance as an individual or team, go to http://www.alz.org/seva.