Irrepressible best describes 9-year-old Bradley Garner, whose enthusiasms range from baseball to gardening, trees and driverless cars. More reserved, his older sister, Frankie, 12, pursues similar interests in softball and nature, along with music studies.
Like their peers, the Garner children divide their time between school, family, friends and extracurricular activities. Unlike them, their dad, Jim, 51, has Early Onset Alzheimer's, a rare variation of the brain disease that affects millions of older Americans. It has a strong genetic component and the children have a 50-50 chance of inheriting the dementia that currently has no cure or effective treatment to slow it.
It has changed the Newport News family's life.
Diagnosed three years ago, Jim's symptoms are particularly evident in his short-term memory loss and a tendency to tune out. Though he recently started working a few mornings a week, mostly he's home following lists of chores left by their mom, Karen, who works full-time.
The children have had to adapt to his forgetfulness and limitations and have taken on more responsibility to compensate for their dad's illness. They have to be self-reliant regarding their homework, they've learned to double-check the contents of the lunches Jim prepares, and they do more chores around the house. "They're much more accepting than I am," said Karen, while expressing concerns about the effects the disease is having on their childhood.
For Bradley, who doesn't remember his dad any other way, there's a definite upside in having more time with him. They walk to school together every morning. They toss a baseball back and forth for hours. They discuss the Red Sox, his favorite professional team. He rides his bike while his dad jogs. They play board games, with Bradley sometimes reminding his dad of the rules. They admire the garden's unruly vegetable crop. This is the first year that Bradley has grown his own veg from seed. "Look what I caught!" he announces, clutching two cucumbers to show his dad. He's also planted a couple of trees, including a curling willow that he checks on twice a day. Back inside, Bradley's attentive to his dad, and sitting close to him, leaning in, the son's eyes shine with love.
But Bradley gets frustrated too. "Why did you have to write it down," he queried his mum on the phone about an assignment. "He'll ask me 50 times if I've done it." To which Karen responded, "Just cross it off the list when you're done." Bradley acknowledged the simple solution with relief. "He's very sensitive and intuitive," Karen said. "He gets very upset when I vent my frustrations with Jim." Noting the close father-son bond in the context of what lies ahead, she added, "It breaks my heart."
He knows about Alzheimer's and that it's changing his dad. But he doesn't have the same frame of reference as his sister, Frankie. "She was really close to him. She remembers more who he was," said Karen.
Frankie's also able to put into words a call for action. While she shuns publicity and doesn't want to participate in local events, or anything that would make their family stand out as different, this summer she penned a powerful letter to U.S. Sen. Mark Warner about Alzheimer's (see sidebar). "I am really sad about my Dad. He is a great Dad. He plays ball with me and fixes me food and he is a really nice Dad. He is really smart and I love him very much," she wrote in her plea for more research funding.
The family made an appointment to hand-deliver the letter to the senator in Washington D.C.. Their visit prompted Warner, whose mother died from Alzheimer's, to sign on immediately as co-sponsor for the HOPE for Alzheimer's Act. "It was really exciting to meet all the important people," Frankie said of their meetings with Warner and Congressman Scott Rigell, who later added his support. "It felt really good that they were listening to what you were saying and they were people who could do something about it," said the 7th-grader.
"It was just really fun. I take the credit for it too," said Bradley, admitting that his sister did the work.
Posted on the senator's Facebook page, the letter has been the most read of any post all year, according to Kevin Hall, Warner's communications director. "It has struck a chord. It's had the highest engagement of anything we've posted," he said.
"I think it just comes differently from an adult saying it. It has more of an effect on people. It means more coming from the kids," said Frankie.
Reach Salasky by phone at 757-247-4784
Walk to End Alzheimer's
• Oct. 19, Walk to End Alzheimer's. 8:30 a.m. registration, 10 a.m. walk, Styron Square, Loftis Boulevard, Newport News. Contact Rona Altschuler, chair, 757-329-4440, firstname.lastname@example.org; Barbara Monteith, 757-812-0638, email@example.com; or go to http://www.alz.org/seva.
The HOPE Act
The HOPE (Health Outcomes, Planning and Education) for Alzheimer's Act (S.709/H.R. 1507) was reintroduced this year by Sens. Debbie Stabenow and Susan Collins and Reps. Edward Markey and Chris Smith.
The act would:
• Provide Medicare coverage for services including clinical diagnosis of Alzheimer's, care planning for the newly diagnosed and their caregivers, information about medical and non-medical options for treatment and support;
• Require documentation of the diagnosis and care planning in medical record.