Caring for adult children with disabilities can be equal parts love, fear
Sonny Gilbreath’s face gets serious and he shakes his head like the devil himself is appearing. No, he won’t put his adult son, who suffered a traumatic brain injury as a teenager, in a care facility.
“It’s part of my obligation as a dad,” Gilbreath said in a commanding, no-nonsense tone. “I want to take care of him. I just believe in taking care of my family.”
Yet Gilbreath is aging. At 71, the retiree is healthy and strong and takes no medication. He has the look of a man who’s worked hard outdoors his whole life. But the reality is he can’t care for 46-year-old Blane Gilbreath forever.
It’s a concern that haunts parents of adult children who have severe disabilities. Those children, like everyone else, are living longer. That means parents and guardians must have a plan to care for their children when they’re no longer able to do so. For some, like the Gilbreaths, that means relying on extended family. For others, it can mean making arrangements for their children to be cared for in group homes or other facilities.
According to the 2010 U.S. Census, about 12.6 percent of the population, or 38.3 million people, have a severe disability. Of those, nearly 37 percent are 65 or older.
Changed forever at 17
As the Gilbreath family knows too well, life is unpredictable. So the tight-knit clan has a pact that ensures Blane will be cared for by family, no matter what.
“It’s family,” said Jeramey Gilbreath, 35, who is next in line to care for his brother Blane. “That’s just what you do. There wasn’t much of a thought process.”
After a five-year battle with cancer, Sonny Gilbreath’s wife, Nyla, died in 1999. He needed to continue working, so his daughter, Leah Anton, and her husband cared for Blane along with their three children. Leah was diagnosed with multiple sclerosis about 10 years ago. Recently, the disease progressed and she’s at risk of falling.
Sonny Gilbreath decided to retire, turning his construction business over to Jeramey and taking full-time care of Blane. When that’s no longer possible, Jeramey and his wife, Amanda, will take over. The couple, who have 5-month-old twin boys along with a 6-year-old daughter and 3-year-old son, are looking for a larger house that could accommodate Blane and their kids.
Blane Gilbreath was injured in May 1986, when he was 17. He was riding on the back of a motorcycle with a friend when a drunk driver ran a red light, hitting the boys and forever changing Gilbreath’s life. The other teenager had a broken leg.
Gilbreath, at the time a popular Coeur d'Alene High School athlete, sustained massive head injuries and spent three months in a coma. He wasn’t expected to live. Then he wasn’t expected to walk and talk.
Nearly 30 years later, Gilbreath walks and talks, and spends his days at the Tesh Vocational Center, a Coeur d'Alene nonprofit that helps people with disabilities with employment and independent living. There he assembles three-piece ports for injecting pesticides into trees.
Gilbreath is blind and has little memory and no sense of time, and he usually talks in loops, a well-worn sentence or two in response to a question.
Put it in writing
Terri Johnson, Tesh’s director of rehabilitation services, reiterates how important it is for families and guardians of people with disabilities to plan for their future care and put those wishes in a legal document. Tesh’s service coordinators help facilitate making those long-term care plans.
Johnson said even young parents of children with disabilities need to take those steps, because young parents die sometimes, too.
“Some clients’ families didn’t have a plan and something awful happened,” Johnson said.
She notes that it’s hard enough for someone with developmental disabilities to transition from living with family to living in a group home or care facility. Add to that the trauma of losing a parent or guardian and “It’s brutal,” she said. “People with developmental disabilities struggle with change anyway.”
To ensure Blane’s safety, Sonny Gilbreath texts his son Jeramey at 6 a.m. and 8 p.m. daily to let him know all is good. The bus driver who transports Blane to Tesh also knows to call one of the siblings if Gilbreath isn’t at the house for Blane’s pickup or return.
To keep busy, Blane Gilbreath spends the evenings folding laundry, cleaning the bathroom or sorting cans of nuts and bolts in his dad’s shop. He doesn’t like to sit still and maintains the strong work ethic he had before the accident, of which he has no memory.
“Wanna make him mad?” Sonny Gilbreath said with a hearty laugh. “Tell him he can’t go to work.”
After a moment of pause, Sonny Gilbreath concedes with a sigh that the family would put Blane in a nursing facility if his behavior ever turns violent or he becomes incapacitated and needs constant medical care.
But Gilbreath chafes at that realization. He can’t imagine living in a nursing home himself, much less sending his son to one.
“I don’t think I’ve ever been afraid of anything except being put in an old-folks home,” Gilbreath said.
This story was originally published December 30, 2015 at 6:35 PM with the headline "Caring for adult children with disabilities can be equal parts love, fear."