July 23--The thing about Alzheimer's disease is that you lose your loved one twice -- once when they forget you, and then when they die, says Catherine "Cat" Sweatman of Fort Smith, Ark.
The 18-year-old is sharing her story with five campers at a Colcord ranch nestled in the foothills of the Ozark Mountains. All are teenage caregivers for a parent or grandparent who has the disease.
Sweatman earned her wisdom the hard way. At age 9, she became caregiver to her father, who had early onset Alzheimer's disease.
"I was 10 when he forgot who I was," she said, fighting back tears. "It's heartbreaking. It was probably the worst day of my life."
Her father died at age 58, when Sweatman was 16, an "equally devastating" day, she said.
"How many 18-year-old girls have their dads die of Alzheimer's disease?" she asked "How messed up is that?"
Alzheimer's is a progressive and fatal brain disease that causes problems with memory, thinking and behavior. Some 5.3 million Americans are living with Alzheimer's, and experts predict that 16 million Americans will have the disease by 2050.
Younger-onset Alzheimer's refers to when the disease occurs among people age 65 or younger. An estimated 500,000 people have younger-onset Alzheimer's disease or other dementia; of those, 40 percent have Alzheimer's disease, the association said.
Sweatman is an Alzheimer's teen advocate. She has traveled twice to Washington, D.C., to share her story with members
of Congress and has participated in other events, such as the teen caregivers' camp. She gives 10 percent of her income to the Alzheimer's Association for research and education. And she encourages other teenagers to be advocates, too.
"I'm sure you guys don't want anyone else to go through what you went through," she told the campers.
In just its third year, the weeklong summer camp is named after 15-year-old Austin Mobley of Missouri, whose mother, Tracy Mobley, was diagnosed with younger-onset Alzheimer's disease and frontal-temporal dementia when Austin was 7 and she was 38.
This year, five teenagers ranging in age from 13 to 17 -- including Mobley -- were able to participate in "Austin's Camp Building Bridges" at New Life Ranch. Eleven had registered, but family situations prevented their attendance. The Hille Foundation is the primary sponsor of the camp.
One youth came from as far away as Arizona. Others came from Oklahoma, Missouri and Arkansas, said Margaret Love, a counselor and assistant program director of the Tulsa office of the Alzheimer's Association of Oklahoma, Texas and Arkansas.
Children as caregivers has been cited as a hidden national problem, she said.
"The roles they play are the same as the adult roles," Love said. "They feed them, cook for them, dress them, take them to the bathroom. Everything adult caregivers do, they do."
The camp provides teenage caregivers support and education about the disease and teaches coping skills through journaling, photography and other activities. It also allows them to open up about their feelings.
"Emotions are normal," Love told the youths Monday. She asked what the teenagers would feel if they wanted to hang out with their friends but their ill parent or grandparent needed them to help.
"Me and my mom are close, so I don't mind really," Mobley said.
Tristan Walker, 14, of Frost, Texas, added, "You can always be with your friends other times."
Although the camp allows the teenagers to find emotional support and resources, its primary aim is to provide respite, Love said.
"We're trying to give them a chance to have some fun and be a kid," she said.
Kim Archer 581-8315
kim.archer@tulsaworld.com
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