By Prue Salasky, email@example.com | 757-247-4784
September 16, 2012
Four years ago, Karen Garner received a phone call she'll never forget.
Her husband, Jim, traveling on business in Savannah, Ga., called to tell her he was looking at the same bridge that they'd seen on a recent vacation.
She hung up the phone in her downtown Hampton office and cried. The family had never been to Savannah. She couldn't convince Jim that he was confusing the bridge with one in Charleston, S.C.
"I knew something had changed in my life, and it would never be the same," Karen recalls.
The problems had started a couple of years earlier. Jim would say things that didn't make sense to Karen, now 42, and to their children, 11-year-old daughter, Frankie, and son, Bradley, 8. This led to huge, no-win arguments. His mental lapses weren't consistent, which made them more difficult to understand. "The children need consistency in diet, love, bedtime, discipline. There are so many facets of parenting that require multitasking and teamwork. Both parents have to be able to follow through," she says.
The Newport News couple went to marriage counseling, but Jim would just agree with everything she said. "We must have been very frustrating," she adds, while he nods in agreement. "Frustrating" is a word she uses a lot; she wishes there were a stronger word for what it's like trying to raise two children while living with someone who, in her words, "is slowly losing his mind."
Jim, now 50, lean and fit with classic good looks, has early onset Alzheimer's.
Though he was diagnosed in the preliminary stage, designated as "mild cognitive impairment," there is currently no treatment that can stem the progression of the neurodegenerative disease — the same disease that took the life of his mother at 61, and earlier this year, his older brother, Bruce, at 52. It is likely his uncle, grandmother and grandfather were also victims.
Early onset Alzheimer's, whose symptoms typically emerge between the ages of 40 and 50, is genetically predetermined. His children face even odds of acquiring the inherited dementia at the same age.
Though it's most likely too late for Jim, the Garners are committed to raising awareness and funds to find a cure for the disease that's wreaking havoc with their family.
How it started
At Karen's urging, in 2008, Jim went to his doctor. Jim said he had trouble sleeping, and the doctor duly put him on anti-depressants, changing the prescription several times over the course of 18 months, to no avail. The doctor then referred him to a neuropsychologist, who conducted cognitive testing over a three-year period, and to a neurologist who proved "ill-equipped," as Karen dubbed it, to handle their situation.
"This is a very slow process. They don't officially tell you; it's not like a heart attack where you have the date. It slowly comes out that it's not this, this and this," said Karen. "I knew before the doctors did."
Patricia Lacey of the Southeastern Virginia Alzheimer's Association said it's not uncommon for early onset to be misdiagnosed initially.
"It seems out of the realm of possibilities for someone so young. For older people, Alzheimer's is the first thing you think of when someone starts forgetting things."
Yet the greatest progress in Alzheimer's research has been in diagnosis, rather than treatment, and it's now possible through new brain imaging techniques and a spinal fluid test to identify the disease with some certainty. Jim was the first person to have the cerebro-spinal fluid test at Riverside to check for Apoe4, a tell-tale genetic marker. A fault in the test's handling, however, rendered it inconclusive.
Then, in 2011, he went to the National Institutes of Health for comprehensive diagnostic trials. In an exhaustive battery of tests, the NIH ruled out everything else and diagnosed him with "mild cognitive impairment," or the precursor to Alzheimer's; they used the new Pittsburgh Compound-B test in a PET scan, along with blood work and cognitive assessments to determine that he is, as the NIH letter stated, "considered by most in the research field … at high risk of developing Alzheimer's."
How their lives changed
His illness has affected everything, from the family's daily routines to planning for the future.
"He was very capable, good at fixing things around the house," said Karen.
Last year, they met with lawyers to put in place a power of attorney and a medical power of attorney, and provisions to protect their assets.
"We got as much done while Jim could help me. It gives him some comfort to have things in place," she said. It's too late, though, to get more life insurance or the long-term care insurance that a friend who went through a similar experience recommended.
"I was expecting her to say, 'we should have made love more,'" Karen said, ruefully.
While Jim's mental decline isn't immediately obvious in a social setting, it has affected the couple's physical relationship.
"He no longer has the ability to share his thoughts, there's no emotional intimacy, so it's hard to have the physical intimacy," Karen said as Jim's eyes momentarily brimmed with tears. "It's like losing your best friend and your lover."
In 2005, Jim retired from the Air Force as a senior master sergeant after 23 years working on radar systems. This January, he quit his job as a contractor, no longer able to multi-task.
"He had to work very hard. He had a list; he just went by that," said Karen. "I think he could still do a part-time repetitive job." Again, his eyes glistened with tears before taking on a vacant, faraway look.
Though he gets an enlisted grade military pension and has just been approved for Social Security Disability Insurance, SSDI, the family has taken an economic hit. Karen has ramped up her work hours, and they've scaled back on the extensive travel they used to enjoy. They went up and down the East Coast, to Yellowstone and Glacier national parks, to California, Mexico, Germany and Italy. They loved the Outer Banks, camping, skiing and whitewater rafting.
"We always wanted to go to Australia," Karen said, wistfully. They're still planning to "scrimp and save" in order to take a family trip to Alaska next year, a destination chosen by Jim.
A great personality
On the bright side, he currently has his "dream job" of stay-at-home dad.
"It's something he's always wanted to do," said Karen. He plays Monopoly with the children — the National Parks version — for hours on end, occasionally admonishing Bradley to play fair, and other times showing his humor with some dry one-liners. "He's gotten really, really witty the last few months," Karen noted.
Their friends attest to his humor and personality. Lauri Nosil, who frequently walks the neighborhood with Karen, has observed how he's changed. "He was so sharp, witty and charming. It's like his personality has been watered down," she said. "He is truly a ton of fun. The things that make Jim Jim are slowly changing and going away."
When Karen confided in Diane Griffiths a couple of years ago, her friend wasn't sure what to think.
"We were two girlfriends trying to figure things out. A lot of it is so subtle you'd only notice in your immediate family. You question your reality," she said. Since then, Griffiths has noticed a difference in how Jim socializes, but described him as "lovely to be around," and very supportive of Karen.
He still stays fit, running several miles most days, and he still tosses a baseball with Bradley in the yard, but he's given up coaching his son's T-ball team.
"I'd help out if they wanted me to," he said mildly. "I could teach them how to play."
To keep up with the children's activities, Jim writes down as many notes as he can; he also relies on reminders from them, such as what to put in their lunches. "Or I ask Karen," he said with characteristic directness. Behind the wheel, he uses written directions to navigate, and Karen constantly monitors his safety, aware that one day she'll have to take away the keys.
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.
Copyright © 2014, Newport News, Va., Daily Press