Violette King is buzzing around her home office in Godfrey searching through photos and cluttered files detailing nursing home abuse when a ringing telephone interrupts.

On the line is an elderly man. He wants a recommendation on a nursing home for his ailing wife, who is being discharged from a hospital.

"Can't you keep her at home?" King asks in an incredulous tone, hand on hip. "We don't recommend any nursing homes. There aren't any good ones around here."

Her response is harsh. But King, one of the nation's leading voices for nursing home reform, is adamant in her belief.

Across the country, thousands of advocates like King work tirelessly to keep close tabs on the multibillion-dollar nursing home industry.

Whether it's sneaking into industry meetings to gather intelligence, donning disguises to make midnight inspections in problem homes or traveling long distances to badger lawmakers to reform nursing home laws, this ragtag army of agitators keeps the pressure on nursing home owners, employees and public officials.

Loosely knit by phone, fax, e-mail and Web sites, they form a nationwide information network that identifies poor homes, crusades for legislative change and in many cases provides the last hope for families who feel abused by the system.

"It is somewhat of a crazy quilt of organizations and individuals, but it is an incredibly dedicated and stalwart group," said Deborah Mitchell of the National Citizens' Coalition for Nursing Home Reform, an umbrella organization representing a broad coalition of advocate groups and individuals. "There's absolutely no question that they are invaluable. A lot of times residents' lives are in their hands."

Fueled by anger

Over the years, the efforts of advocates, most of whom are women, have led to lawsuits against homes, sparked changes in several states and driven some of the nation's worst operators out of business.

Many are drawn to the cause by what they perceived to be the preventable loss of a loved one in a nursing home. Fueled by their anger, the views of some can be extreme.

Words such as crooks, corruption and incompetence pepper their conversations about those who run and regulate an industry in which every year thousands die preventable deaths.

"It's an American disgrace - the American holocaust," said Ila Swan, a crusading Californian.

Swan spent three years and put 56,000 miles on her Toyota Cressida visiting all of the state's counties to buy more than 3,000 death certificates and autopsy reports. Her investigation uncovered large numbers of preventable deaths and eventually led to changes in California law, a General Accounting Office investigation and hearings before the U.S. Senate Committee on Aging in 1998.

"Guess what? They're still killing people," said Swan, 62, a retired telephone company worker. "Nobody is making them stop. We're not talking about an airplane part or DDT in the environment that over the years will kill somebody. We're talking about killing going on right now, and nobody will do anything about it."

Advocates employ a variety of tactics, including pickets, protests and use of the media to keep the issue in the public eye and to hold regulators accountable.

On a steamy, late-July morning, about two dozen people, including children, marched in front of the St. Louis County Justice Center in Clayton to protest the lack of prosecutions in the overheating deaths last year of four women in a University City nursing home. Many carried signs that read "Who owns County Prosecutor McCulloch?" and "Nursing home deaths go unpunished."

Off to one side, King adroitly handled a half-dozen radio and television interviews, schmoozed with a state legislator and exchanged hugs or pecks on the cheek with late arriving protesters.

Grudging respect from some foes

Despite often being the target of their attacks, some public officials offer grudging respect to a group they have come to rely on to help keep watch over the nursing home industry.

"Their heart is in the right place," said Chris Wiltse, who oversees state nursing home inspectors in the St. Louis region. "What they really want is what's best for the residents."

Wiltse also envies their ability to be more candid than public officials.

"Sometimes it's easier for them to say what it is they really feel or what it is that they really, honestly think," he said.

If the words of some advocates are extreme, so too are some of their methods.

King spent the week of the 2000 Republican Convention driving around Philadelphia displaying large billboards that read, "Mr. Bush, nursing home abuse and neglect should be federal crimes, what do you plan to do about it?"

Swan, who now stays home to care for her elderly mother-in-law, recalled her days of donning disguises to visit nursing homes. Sometimes she employed one of the 20 wigs she kept. Other times she relied on clear adhesive tape.

"You pull back your eyes and tape them so you look like a Japanese person," she said. "They never recognize you."

She also learned how to put a tape recorder in her pocket and snake a microphone up under her collar so she could record her observations rather than raise suspicion by writing notes.

The aide was in tears

Swan's activities have earned her the trust of nursing home employees, who she feels are often as abused as the residents for whom they care.

She recalled an early morning telephone call from a certified nurse's aide working at a nearby nursing home. The caller was in tears.

"She said, 'I can't do this anymore. I've got 100 patients and I'm the only one here,'" Swan recalled.

Swan said she drove to the home, where she found "total chaos."

A call light board was lit up beaming with unanswered patient calls for help. A resident lay on the hallway floor. The nurse's aide sat nearby cradling in her lap the head of another resident who had fallen.

Swan retrieved a pack of cigarettes from her car, returned inside, lighted several and walked up and down the hallways spreading smoke. She then walked to a public phone across the street and called the fire department to report smoke in the building.

"Within 30 minutes she had all the help she needed," Swan said.

Oklahoma's fierce advocate

For some advocates, the work becomes an all-consuming passion. Private and professional lives are put on hold and personal bank accounts take a beating.

Wes Bledsoe gave up his sales job in California and moved to Oklahoma after the sudden death of his grandmother in May 2000 from what he believed to be abuse and neglect. His wife, Rosemary, stayed behind, and the two have since maintained a long-distance marriage, while Bledsoe has become possibly Oklahoma's fiercest advocate.

Today, he works 70 to 80 hours a week, arranging media coverage, working with families, organizing rallies and keeping the issue of poor care squarely in the public conscience. Bledsoe survives on meager savings, financial help from friends and relatives and a near monklike existence.

The nonprofit group he founded, A Perfect Cause, seeks to ban nursing home officials and lobbyists from donating money to political campaigns. The organization also wants a state board set up to review all nursing home deaths; and it proposes installation of video cameras in nursing homes to deter abuse and neglect.

In May, the group hung 900 "spirit dolls" on long lines on the state Capitol steps to represent the people they contend had died from neglect or abuse in Oklahoma nursing homes within the past year.

"We're creating an awareness that there's a crisis and that there's no accountability," Bledsoe said.

Oklahoma State Ombudsman Esther Houser calls Bledsoe an "acquired taste" but applauds his efforts.

"He goes where others fear to tread or where others may have tread before and gotten run over," Houser said. "He does come on strong, and that does alienate some people that could be his allies if he were a gentler soul. He's not rude, but he absolutely doesn't mind making a scene in public or confronting people with their track records. He's made a lot of people uncomfortable. I used to be their worst nightmare. Now, I've finally got some relief."

"It breaks my heart"

For all their effort, many advocates wonder about their ability to end abuse and neglect.

"There's just not enough of us," Swan said. "There's just too much of it going on. And it breaks my heart. I'm not usually one to throw my hands up in the air and give up, but I don't expect to see a change in my lifetime.

"Where is the justice? If I did to my mother in my home what they do to people in these homes, I'd be in prison," Swan said. "It's the only business I know where they can get away with murder and it gets changed from a capital crime to a citation. What deterrent is there? No one goes to prison."

Reporter: Phillip O'Connor
E-mail: poconnor@post-dispatch.com
Phone: 314-340-8321