Mother details son’s struggle with mental illness
This is the shining son, here on her phone, Clara Gamargo wants back.
They’re laughing together in selfies he took barely a year ago — before that day he hurled her onto the gravel of their Hickman Mills driveway so hard that her lung collapsed.
Before she cowered in wait for the police, watching him leaning against her car with a cigarette as if nothing had happened in his mysterious world living with schizophrenia.
Marquis Gamargo — at age 24 — is now locked in a nursing home.
He’s cast in a broken mental health system that increasingly relies on nursing homes with secure wings to handle mental illness’s most difficult cases.
It’s a national struggle, bred by widespread failure to adequately support the community mental health services that replaced the mass institutionalization of people with mental illness that had persisted into the early 1980s.
When housing options run out, states turn to skilled nursing homes — with 24-hour medical staffing — that traditionally serve geriatric populations.
In Missouri, these skilled nursing facilities are not monitored by the state Department of Mental Health. Their residents live tucked away out of the reach of mental health caseworkers.
Kansas licenses specialized nursing homes for mental illness, but critics say too many residents languish without aggressive care.
See the young man in the pictures? Gamargo swipes through them. It was her birthday, and Marquis playfully had sat on her lap — though he’s much bigger than her — flashing his bright smile and the showman’s flare that dazzled girls and won him parts in high school plays.
Her son lives now in Levering Regional Health Care Center, four hours away in Hannibal, Mo.
And it terrifies her.
“I have to give him help,” she says through tears. “I’m scared for him, he’s so far gone.”
That is what she told the man whose office sent him so far away — Jackson County Public Administrator John Killian — when he invited her recently to talk about Marquis in a meeting witnessed by The Star.
“He’s lost most of his friends,” Gamargo said. “I don’t want him to be alone, and lost.”
But there at the table, she and Killian shared a deep and mutual frustration.
Compromised choices are the only choices they’ve got.
The best Killian could say about the circumstances that have led him to scatter some 150 people with severe mental illness in nursing homes across the state is this: “It’s not ideal.”
Others speak in more dire tones. Gamargo and the public administrator are snared in a state setup that is irresponsible, many observers say.
The nursing homes “are way less than ideal,” said Steve Jarvis, chairman of psychiatry at Truman Medical Centers. “I found them to be harmful. I would not want to send someone there, even when picked up homeless on the street.”
It’s “a tragedy” for many of the people locked in nursing homes, said attorney Frank Murphy of Kansas City, a former public administrator who represents many people in guardianships.
“We are re-institutionalizing,” he said. “Too many go in, and they don’t get out easily.”
The actual number of severely mentally ill people placed in skilled nursing facilities is unclear, but Ed Bothe, manager of an assisted living facility in Jefferson City, estimates that some 800 are admitted every year in Missouri, now totaling in the thousands.
In Kansas, the results are no better, advocates say.
Ten Kansas facilities are filled with nearly 700 severely mentally ill residents, many of them young. But the resource-starved homes provide little distinctive care for mental illness, said Rocky Nichols, executive director of the Disability Rights Center of Kansas.
“We’ve created a ghetto for people with the most significant mental health needs,” he said. “You drop them off, and you’re done. …What they get is a bottomless supply of those little white cups that hand out medication.”
Several factors have led to this point. The facilities and services that make up the mental health system are underfunded and overburdened.
State psychiatric hospitals in Missouri and in Kansas have almost no beds available beyond those occupied by people facing criminal charges.
Local hospitals with psychiatric wards are pressed to discharge patients often before they are ready to leave, as crisis cases keep coming through the door.
Community mental health centers and the network of group homes and counseling programs can’t keep up with the demand for services.
Consequently, many people in psychosis, who have refused medicine and care, become a danger to themselves and others, with little standing between them and homelessness or jail.
For decades, prisons were the “de facto long-term care” for mental illness’s hardest cases, said Mitch Landucci, a deputy case manager in Killian’s office.
But now nursing homes are taking their place, he said, “by default.”
The level of psychiatric care varies between homes, but psychiatrists usually are not on staff, but rather on call and may do visiting rounds once a month, caseworkers say. Clients can get regular medications, but they will not get the more specialized psychiatric care of a hospital.
The nursing homes earn their Medicaid money when they take on these most difficult cases, Bothe said. But he fears there is little incentive “other than their own conscience” for facilities to move stabilized patients toward independent living. In the industry, he said, stabilized patients are called “easy keepers.”
The county public administrator’s offices charged with overseeing many of the cases in the nursing homes have more than they can handle.
The two deputy case managers in Killian’s office — Landucci and Becky Hutton — between them manage some 300 guardianship cases.
They visit each of their cases at least once a year and review treatment plans at least four times a year, Killian said. Some nursing homes are better than others, but the choices are usually few. They might reach out to 40 homes and get one reply back offering to take someone in.
Just recently, Hutton told Gamargo, she got to meet Gamargo’s son while she traveled among some of the farther-flung facilities to check on distant wards under the Jackson County office’s guardianship.
They had only 10 minutes together, Hutton said, and other residents with needs were hovering over them, anxious and persistent.
“He is so young,” Hutton said. “A cutie.” He pleaded for a chance at some talk therapy, something the nursing home would have to contract out, shesaid, and staff said it would be available to him.
But will they? And will he take it? Assurances are fleeting.
Inside the walls
Wentric Williams II operates Kansas City’s busiest nursing home with locked wings for people with severe mental illness.
He sweeps through the men’s unit at Bridgewood Health Care Center, where residents cluster in the sparse hallways, inside on what is a beautiful day on the outside.
Men with earnest faces step toward Williams as he passes. They want his attention. Each presses him with something — a complaint, a fear, a want.
Many of them have been in prison. Some are registered sex offenders. Some are drug addicts.
“They’ve lived rough, rough lives,” he said.
The women’s wing finds the same clusters. Some sit against the wall with their knees drawn up.
“How are you doin’?” Williams says encouragingly to one woman as he passes.
“How do you think?” she answers sourly. “Same as always.”
Facilities like Bridgewood aren’t monitored by the Department of Mental Health, but by the Department of Health and Senior Services, which traditionally serves residents with physical and developmental disabilities, many of them frail and elderly.
The nursing facilities are expected to be able to provide all the health services their clients need — whether geriatric patients or mental health patients — and Williams says Bridgewood does.
It’s not easy. Probably 90 percent of the people in these locked wings “no one else would take,” he says. Their staff is trained in the “five-man-takedown” to restrain any dangerous outbursts.
There are 72 beds in the men’s secure wing and 34 in the women’s. They’re filled up, Williams said. They have a waiting list.
“The demand is getting heavier,” he said. “Clearly they need us.”
Medicaid offers no support for community mental health caseworkers to follow clients into the nursing facilities because the Health and Senior Services-licensed facilities are already Medicaid-funded to provide all of their clients’ needs, said Debra Walker, spokeswoman for the Department of Mental Health.
“They are supposed to be receiving all the mental health care they need,” Walker said. “I cannot answer whether they do. … We are assuming the mental health services are being provided, but it is not something we can oversee.”
Health and Senior Services’ ombudsman program and its legion of volunteers take up the watch on nursing facilities. Calls from the secured wings for mental illness throughout the state are overtaking their caseloads.
Just five out of the 90 nursing facilities that ombudsmen watch in northwest Missouri’s Region Four specialize in secured severe mental illness care, regional director Becky Caldwell said, but their residents account for 80 percent of the calls they receive.
They tend to be more vocal. Their needs are hard to meet. Many want to be freed of guardianship, and they make it known.
Many of the residents are physically strong, young adults living in centers adapted from buildings and activity areas designed for elderly residents, said Michelle Brown, director of the ombudsman office for Region Seven, the Kansas City area.
“They are mixing two populations that don’t necessarily meld well,” she said.
Bridgewood has group therapy programs, Williams said. It has success getting patients on their medications. Some are able to get privileges to go outside with staff, and many graduate out to less-restrictive care. Some, though, come back.
The residents here “want as much of a life as they can within these walls,” Williams said.
He’s not blinded by any illusions.
“They don’t want to be here,” he said. “No one wants to have their loved one here.”
But someone has to help them, he said. Guardians come with their family member, weary, and say, “Please take him.”
Nowhere to turn
Clara Gamargo got herself a gun.
She was desperate. Scared of the son she loved. She was one of those family members Murphy, the former county administrator, described as being “tormented” by the system’s failure to provide necessary care.
But this spring, when she saw her wish was about to be granted — that a judge was going to order her son into state guardianship — her heart burst in grief.
She knew he’d slipped her grasp. Her son was lost.
He had tried so hard to hold himself together and impress the court. But his words raced. His thoughts raged. And he’d shown himself to be a danger.
“It was not some guy at the bus stop talking to himself,” Gamargo said. “That was my son … so angry at everybody and everything.”
She had tried every way she could, she said, to save her son — “who once played guitar, who taught himself keyboard, who loved to sing and be happy.”
Gamargo is a single parent, and she was alone trying to figure out what had happened when he disappeared for several months after Halloween 2010. The 18-year-old who reappeared at their house the following summer was not well.
He knew it, too, she said. Voices had invaded his head. She knows how hard he tried to control it. There were times he took his medications and collaborated in his treatment. He focused on job applications and sought to keep his friendships.
But when he rebelled against medications that made him “numb,” or streaked dark circles under his eyes, the services failed. He became convinced the government was using him as a lab rat for medicine.
“There is no bridge from that point when they are too far gone,” Gamargo said.
Right now, a protective order prevents them from talking. But she yearns to see him. She knows what he’d say.
“He’d say, ‘Mom, why aren’t you helping me?! We have to fight the system! We have to fight it together!’ ”
She is fighting, she said. She doesn’t want him put away, forgotten in a locked hall.
Gamargo wants medications and therapy to work. She wants him to become the college student he had planned to be — maybe help others escape their illness.
She’s fighting, she said. She just doesn’t know where to turn.