Who cares for the caregivers?

By Darrell Laurant

Published: September 24, 2008

These days, Royal Jones is surrounded by things she finds painful to look at.

Like the interior of her small house off Campbell Avenue, the place where her father slipped away by slow degrees over more than seven years. And the ancient dog named Missouri who creeps around the bedroom on his own last legs, reminding Jones once again of the inevitability of death. And, most of all, a video titled “The Caregiver.”

Her video.

“I’ll set it up for you,” Jones said on a recent afternoon, snapping the cassette into the VCR player, “but I can’t watch it. It’s my life.”

For those aforementioned seven years, her life was her father. It wasn’t supposed to be that way.

Jones graduated from West Virginia State College with degrees in media production and journalism and was looking around for a master’s program when her father — a retired minister in failing health — contacted her and asked her to come to Lynchburg and care for him.

“Ten days after graduation, I did,” she said. “Thirty days after I came, he had his first debilitating stroke. He was bedridden the entire 7.5 years. All he could do was eat, on good days.”

The video begins with the words “The Caregiver: Disturbing Images of Your Future.”

The next scene has Jones’ father in bed, trying to blow life into a television remote.

“That’s not a harmonica,” his daughter tells him, laughing. “Let me get you the harmonica.”

It’s all downhill from there. “The Caregiver” will turn your hair white, if it’s not already.

Royal Jones says on the video: “This is dedicated to the unsung, unstrung, undervalued members of human kind: The caregivers.”

During her time with her father, she joined him in his invisibility. She rarely went out, and then usually just for groceries or to stand in line for his medications.

“Out of almost 3,000 days, I had only 100 days break,” she said. “My blood pressure went up to 202/155.”

She loved her father, she said, and there was generally no friction between them. Her quarrel was with her circumstances. The two were getting by on $800 a month gleaned from her father’s Social Security income and some residual donations from the two country churches where he had preached. He had no insurance, she recalled, so his medication came out of pocket. Still, she was unwilling to see him in a nursing home, especially given their financial situation.

“I’ve heard terrible stories,” she said. “And I knew no one else could take care of him like I could.”

But maybe, in that mysterious way that moves society forward in spite of itself, Royal Jones was the right person at the right time. Like thousands of caregivers before her, she tended to her father’s every need, no matter how unpleasant or indignified. Unlike most, however, she had the communication skills to express herself eloquently beyond those walls.

Along with local videographer Phil Spinner, she poured her shame and grief and outrage into “The Caregiver.” Then she sent copies everywhere she could think of — talk show hosts, state agencies, everyone in the General Assembly. She found herself speaking before legislative hearings, trying to get the state to provide a living wage to caregivers at home. Eventually, the gates of resistance parted to allow even family members that allowance, for six hours a day, roughly $7 an hour.

That’s small consolation now. In July, Jones’ father finally died.

“The moment he went into the hospital for the last time, my payments stopped,” she said.

There’s no golden parachute for a family caregiver.

Her father’s small life insurance policies had long ago been cashed in. Jones said she’d pared his mortgage down from $32,000 to $8,000, but there it stalled.

“I’m not going to be able to make October’s payment,” she said. “I have no job.”

She’s trying, she said, but despite her dual degree, what she seems most qualified for is working in a nursing home.

“I can’t do that,” she said. “Can’t. When my father was dying, one woman with the state suggested I ‘find another client.’”

She has found a possible substitute teaching job — maybe — and butted up against dozens of dead ends.

“I remember when my father was alive,” she said, “people would ask, ‘What do you do for a living?’ I’d say, ‘I take care of my father,’ and they’d ask: ‘No, what do you really do?’”