Caring for an adult child with a disability is equal parts love and 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 Post Falls 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, had a severe disability. Of those, nearly 37 percent are 65 or older.

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As the Gilbreath family knows all 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, but 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. Neither feel it’s a burden nor harbor resentment. The couple, who have 5-month-old twin boys along with a 6-year-old daughter and 3-year-old son, is looking for a larger house that could accommodate Blane and the kids.

Blane 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.

Blane, 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 through the night. Then he wasn’t expected to walk and talk.

Nearly 30 years later, Blane 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.

“Screws and bolts, screws and bolts,” Gilbreath is known for saying as he walks from the lunchroom to his job in the large warehouse at the Coeur d’Alene Industrial Park.

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. If you ask about work, he tells you about screws and bolts in a sing-song voice. Ask about his day and he usually says it’s a great day because he makes it a great day.

He learns by repetition, and that’s why he’s been successful assembling tree ports and phone jacks as well as labeling mail or shredding papers. Sometimes he learns a task quickly, other times, it takes years – like the eight years it took to learn the name of Terri Johnson, Tesh’s director of rehabilitation services. Once it’s learned, he never forgets.

He also remembers music, specifically ’80s tunes from bands like Chicago. Gilbreath often bursts into song while listening to the radio, riding with brother Jeramey to get ice cream cones.

“It’s crazy,” Jeramey Gilbreath said. “He can’t remember what you told him five or 10 minutes ago, but he knows word-for-word the songs.”

Blane Gilbreath is cheerful, usually with a big smile. His bright eyes look directly at you when he speaks, making it difficult to remember he has no sight. His dad says his attitude is a blessing because people with traumatic brain injuries can be aggressive and inappropriate.

The only exception is mornings, before Gilbreath has had a cup of coffee, when he’s prone to whining and complaints. Gilbreath calls it his son’s “Dr. Jekyll and Mr. Hyde.”

On a recent morning, the younger Gilbreath is heard muttering inside the bathroom after his shower. “I’m mad,” he complained. “You treat me like a little baby boy.”

Sonny Gilbreath encouraged his son to get dressed. Soon Blane Gilbreath walked into the living room, using the walls to guide him, and sat in a comfy leather chair. His dad handed him a cup of coffee and a couple of pills. Blane smiled and asked in his charming, friendly voice, “How are you today?”

Make a plan and put it in writing

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.

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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.”

Blane has already long outlived the 10 years predicted by his neurosurgeon.

Although he still looks boyish, his dad said there are signs his son is aging – joint aches and the recent cancerous tumor in his colon. Then there are the seizures that started after the accident. Gilbreath never leaves Blane far from sight. If he can get a pill under his son’s tongue quickly, it reduces the severity.

“I expect him to live to be an old man,” Gilbreath said. “Yet I wouldn’t be surprised if he died tomorrow.”

The same scenario is true for Sonny Gilbreath.

“I’m 71,” he said. “I could die of a heart attack any time.”

Sonny Gilbreath is a man’s man. His dad was a tramp miner who traveled the country, and Gilbreath followed in his footsteps but then took up drilling and explosives, priding himself on doing jobs nobody else would touch. He loves working and never expected to retire, always envisioning “dying on the job site.”

But he also envisioned growing old with his wife and having three healthy children. Strict in his faith, Gilbreath spends no time on self-pity. He enjoys his time with Blane, although he’s glad to get a break Monday through Friday when Blane is at Tesh.

On the weekends, Gilbreath cooks big family meals, scouring Pinterest for recipes, and hosts Bible studies. He also enjoys dancing, occasionally taking Blane to the Eagles in Spokane, which he said has a friendly, family environment. Recently, he bought a few mining claims with a friend and plans to dredge for gold. On Sundays, the guys watch televangelists and drink coffee.

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.