The intro to a story in the Atlanta Journal-Constitution:For decades now, Marilyn Humphreys (pictured right with Jenny) has lived two lives — her own and her daughter Jenny’s. She makes Jenny’s breakfast. She feeds her breakfast. She brushes her teeth. If Jenny wants to wear earrings, she puts them in her daughter’s ears. She brushes her hair. And though it’s getting harder to do, sometimes she has to lift her — Jenny weighs 90 pounds — from the bath.
“Everything I do for myself, I do for her,” Humphreys said.
It has been this way since Jenny Humphreys, now 32 and physically and developmentally disabled, was an infant, and it’s not likely to change anytime soon.
In increasing numbers and ways, their story is playing out with disturbing regularity in communities all over the country.
At 62, Marilyn Humphreys, of Atlanta, is part of a generation of parents now facing old age and the prospect that their disabled children — grown now, but still needing constant care and support — will outlive them.
“It’s an odd thing to be concerned about,” said Pat Nobbie, deputy director of the Governor’s Council on Developmental Disabilities. “Most parents expect that their children are going to outlive them. It’s only those of us who have children with developmental disabilities who worry about it.”
According to David Braddock, a psychiatry professor and director of the State of States Developmental Disability Project at the University of Colorado, more than 716,000 adults with developmental disabilities were living with caregivers over the age of 60 in the United States in 2006, the last year for which figures are available.
In Georgia, an estimated 17,000 adults have developmental disabilities. Roughly 50 percent live in metro Atlanta.
As aging caregivers become more frail themselves, Braddock said, they are less capable to provide support to family members with disabilities.
In the three decades since Jenny Humphreys was born, the prospects for people like her have changed dramatically. Not only have laws been enacted to guarantee their rights to public education and timely state care, experts say that better health care has extended their lives far beyond what doctors once thought was possible.
Jenny became ill at 13 months. To this day, doctors have been unable to make a definitive diagnosis of what happened. They predicted the child would die before her second birthday.“She stopped crawling, she stopped walking, and after a while, she couldn’t sit up,” her mother remembered. “She’d just lay in her crib. We took her home, and miracle of miracles, she moved her foot, then her hand. Two years later, she could hold her head up again.”
Marilyn Humphreys never dreamed her daughter would reach adulthood. Now that she has, she said, she worries what will become of her when she and her husband are gone.
“It’s scary,” she said.
For parents of children with Down syndrome, a chromosomal disorder, that fear is compounded.
“With the Down syndrome population, it’s almost like this double-edged sword,” said Janice Nodvin of Dunwoody. “They age more rapidly even though they live longer and healthier lives [than previously].”