"They just threw her stuff in a trash bag on the floor," recalls Kathy. Wedged into the cab of their pickup truck with her mother's last few possessions, Kathy wept silently and stared out at the blur of fast-food restaurants along Blue Ridge Boulevard.
Grieving for her mother was nothing new for Kathy. Disabled by schizophrenia, Norma Hunsucker had to give up custody of her children in 1976, when her daughter was only seven. Yet as an adult, Kathy never abandoned her mentally ill mother, visiting her regularly at care homes, group homes and nursing homes. Even so, despite her loving vigilance, Kathy didn't learn of her mother's death for nearly a month -- after Norma Hunsucker had already been cremated and nearly forgotten by those who knew her as just another "ward." When Kathy was three years old, her mom set the house on fire, prompting social workers to place Kathy and an older brother in foster care. The children spent the next few years in and out of foster homes, returning to their mother between Norma's "nervous breakdowns." There were also happy times, long periods of Kathy's childhood when Norma's mental illness seemed hardly to exist at all, at least to her young daughter.
Her mom would share popcorn with Kathy and her brothers on the floor in front of the television, watching old Western movies. She prepared dinners: pot roasts and fried chicken, mashed potatoes and gravy. At Christmas, Norma dragged out colorful ornaments and decorated a tree, singing along festively with carols spinning on the turntable. In the summer, she took the kids to swimming pools and to Swope Park for picnics.
Yet her mental illness, diagnosed initially as bipolar disorder and years later as schizophrenia, persisted.
Schizophrenia is a complex and chronic medical illness that afflicts about two million Americans. Schizophrenics may hear internal voices taunting them with a running commentary on their behavior. Simple background noises can become roaring distractions, and sufferers cannot escape barrages of hallucinations and delusions. Unpredictable behavior -- laughing wildly at a funeral or flying into a rage watching a sitcom -- adds to the stigma of the mental illness. If left untreated, people with schizophrenia may sink into an inner landscape of horrific visions and unfounded fears.
Whenever Norma's illness took over, her blue eyes stared vacantly. She argued angrily with people no one else could see. Relatives would take Norma to Western Missouri Mental Health Center for days or weeks until medications eased her symptoms. Kathy was too young to understand the diagnoses given Norma by psychiatrists at Western Missouri, but she was old enough to know that something was wrong.
Norma spent her days rocking in a chair by the living-room window, saying nothing, staring out the window or across the room. Night after night, Norma rocked, cigarette after glowing cigarette clenched between her fingers. If she slept, someone would sneak in and torture her children. She was sure of it.
Sometimes Kathy would slip into the living room and sit silently beside Norma, searching Mom's face for emotion, some glimmer of the woman who had been so attentive a few weeks earlier. Kathy's dad, Ray Hunsucker, an alcoholic whose physical and verbal abuse of his wife exacerbated her sickness, was in and out of their lives. Kathy's mom was all she had.
When Kathy was seven, she and two-year-old David were placed permanently in the custody of their father's parents in Higginsville, about an hour east of Kansas City. An older brother lived elsewhere. Kathy's grandfather died a year later, and her grandmother, an elderly, stoic woman, reluctantly raised her son's younger two children alone.
"Mom would always come down to visit us," says Kathy, whose memories were not entirely tainted by her parents' mental and marital troubles. "When we'd see her and Dad pull up on his motorcycle, we were jumping all over, excited," recalls Kathy. Norma played ball in the yard with her kids, listened with them to Quiet Riot records, played Scrabble at Grandma's kitchen table. "When she'd leave, I'd cry for hours, sobbing, heartbroken," Kathy says. "When you're a kid, your parents are everything."
"Say your prayers, go to church, and do good in school," Norma always told them when they hugged goodbye. "Mind grandmother."
"I always had this fantasy that Mom would get well," Kathy says. "That I'd go home to live with her, and Dave would get to come home, too. That somehow, Mom would take care of it."
That dream faded slowly. During one of Norma's hospital stays, Kathy rode with her grandparents to Norma's mobile home. Norma had smashed out every window, and shards of glass jutted from the frames. Inside, she had ripped clothes from closets and flung them about the rooms. Broken dishes littered the floors.
"There is no feeling to describe seeing it like that," says Kathy. "Just a short time before, we'd all sat down and had meals together. When she was well, she was the most caring, compassionate person."
By the time Norma was in her early thirties, schizophrenia had rendered her incapable of caring even for herself. Norma's delusions were terrifying, and, in her mind, totally real. Antipsychotic drugs eased her symptoms, but she set them aside when not forced to take them in a hospital setting. Without the powerful psychotropic drugs, snakes writhed in Norma's belly. Strangers tormented Norma's children. People mocked her, talked against her. Sometimes, Norma dropped to her knees and flailed her arms, overcome with a rush of religious fervor. "Praise God!" she proclaimed down hospital corridors before her medication calmed her. "Praise God!"
Norma's real world also became terrifying. On one admission to Western Missouri, she arrived at the hospital's screening clinic delusional and emaciated. She had been mugged and raped in a park and had bruises on her face, according to records filed with the Jackson County probate court. In 1981, the staff at Western Missouri placed armed guards at the hospital after a male acquaintance kidnapped Norma from the building and forced her to perform illicit acts on the streets. She had returned to the hospital with fractured ribs, scrapes and bruises.
Homeless, delusional and starving, Norma stumbled into Western Missouri again in 1983. This time, after a lengthy stay, a judge declared her incompetent to care for herself. The court appointed the Jackson County public administrator as Norma's legal guardian.
"We are the place of last resort," says public administrator Rebbecca Lake Wood, who has held the job for about two years. Known as "wards," most of the people under her guardianship are mentally ill, retarded or frail, and 85 percent are poor. Their families are generally unwilling or unable to provide desperately needed aid.
As legal guardian, the public administrator must find a place for the ward to live, obtain clothing, give consent for medical care and make virtually all major decisions concerning that person's life.
The Jackson County public administrator placed Norma with her ex-husband for a short time, then in a series of boarding homes. In 1985, she was placed at Rockhill Manor, a massive structure perched on a hill across from Gilham Park.
The imposing building was a posh, family-style hotel in the early 1900s. Now it's a "residential care facility" for chronically mentally ill people, an impressive place with an apparently caring and supportive staff and many programs designed to enhance residents' lives. Since 1996, its owner has poured $2 million into renovation. Mental-health workers, who earned minimum wage back in the late 1980s and early 1990s, when Norma was a resident, now make between $8 and $10 an hour.
When Kathy got her driver's license at age seventeen, she drove from Higginsville to Rockhill Manor. At last, she would visit her mother in Kansas City. She was in for a shock.
"There were a lot of people walking around like zombies," Kathy recalls. "They were just walking around with blank expressions on their faces, their hair all long and matted." A man whose legs had been amputated at the knees scooted across the floor. "It was like something you'd see in a horror movie." She visited many times. Her concern grew with each trip.
"One time, Mom had a sprained ankle, and her chest was sore. I'd ask her what happened, and she'd say, 'It doesn't matter,'" Kathy says. "I'd report it, and they'd say she fell." Norma developed a bladder condition that rendered her incontinent. "I'd go to see her, and her pants would be soaked with urine. I'd say to the nurse, 'Can't you see this? Anybody can see this.' But nobody listens to a seventeen-year-old girl."
Kathy couldn't help but wonder whether Norma had valid complaints that were brushed off as paranoid delusions. If Norma were abused or neglected, who would believe her? Once, Norma called Kathy at 10 p.m. from Boonville, Missouri. She'd taken a bus 100 miles from Kansas City and didn't have money for return fare.
Two hours later, Kathy pulled into the deserted gas station where Norma had found a pay phone. Her headlights swept the darkened parking lot. At last the beams rested on a shivering figure, curled in a fetal position. Her mother was crouched behind an ice machine, trembling and sobbing.
"She was so frightened," says Kathy. "When we walked back into Rockhill Manor after midnight, they acted like they didn't even know she was gone." If something happened to Norma, Kathy wondered, if she wasn't receiving the attention she desperately needed, who would know? Who would care? One afternoon, Kathy and Norma sat outside in Kathy's car while funeral-home personnel wheeled a deceased resident outside to a hearse.
"Kathy, if I die in my sleep, don't you believe it," Norma told her daughter.
"When I'd leave there, I'd go home and cry at night," Kathy says. "I was afraid she was going to die there."
Kathy called the public administrator in 1991 and asked whether the family could help determine where Norma lived. "He said I could not have any input at all unless I wanted to take over guardianship," Kathy says. "I was 21 at the time. I didn't think I could do it because I didn't know about medications or funding or what kind of homes were out there."
Even if Kathy had been knowledgeable about such matters, she and Mitch couldn't have afforded to pay Norma's way. Mitch earned a policeman's salary, and Kathy worked for minimum wage at Wal-Mart. They drove old cars and were saving for a down payment on a house. If the couple had taken in Norma, their home would quickly have become as chaotic as Norma's erratic moods.
"It's a very difficult business to look after someone with a severe mental illness," says Wood, the current public administrator. "Mentally ill people may or may not benefit from medications. They still have symptoms and can engage in really bizarre behavior. Often, they're less than cooperative, and a lot of times, they don't have insight [into their illness]."
Some homes where the public administrator places mentally ill wards are better than others, Wood says. And some are not very nice.
"If you have a lot of money and are well behaved and not a troublesome person, you can go to a fairly nice one," she says. "If you're poor, you don't have as many options available. At most places, they can't afford to have staff 24 hours a day for the purpose of supervising these people. The really bad [homes], we wouldn't put people there unless we have no other choice."
On any given day, the Jackson County public administrator has guardianship over about 1,200 wards, approximately 20 percent of whom are mentally ill. That 20 percent takes up 90 percent of the case managers' time, says Wood. Seven case managers each carry loads of 170 wards.
None of the homes where the public administrator placed her mom was very nice, Kathy says. The worst was the Rustic Inn, a dilapidated flophouse at 30th and Main next door to a tavern. Norma was placed there by the public administrator for a few months in 1995. The building has since been demolished.
"When we went to see Mom there, her door had been kicked in and there was no way to shut or secure it," Kathy recalls. "She had a black eye, with a bruise running all the way down her face. The only clothes she had were the ones on her back." In 1996, a local mental-health center assigned a community-support worker to assist Norma with medical appointments, errands and other needs. "She and my mom really hit it off," Kathy says. "She was like an angel, a godsend. She even sat down and did treatment plans with the family."
"That was the first time anybody had ever sat down with us and asked what was going on in Norma's life," says Mitch. The former community-support worker spoke to the Pitch on condition of anonymity.
"Norma really moved me, just the way she was so appreciative and would always thank me for helping her," she says. "She'd talk about her kids. Whenever Kathy would come and visit her, she would be so thrilled." Norma, who was extremely symptomatic, could also be difficult.
"When she couldn't get her cigarettes, she'd start cussing and calling names," recalls the caseworker. Like many chronically mentally ill people (85 percent of whom smoke), Norma lived for her cigarettes. Because she had only welfare and supplemental security income (a federal welfare program administered by the Social Security Administration for the unemployably disabled) checks to live on, those cigarettes were rationed, doled out to her every few hours. "She was the sweetest lady when I got her a cup of coffee somewhere, gave her some cigarettes, played my Bob Seger tape in the car and took her out and away from the facility," the community-support worker says.
Such simple pleasures were everything to Norma. For much of her adult life, Norma never even had a bedroom to herself. She shared her bathroom with countless others.
From 1997 to 1999, Norma had lived at Carroll Manor, a Midtown nursing home licensed to care for the mentally ill. The sprawling three-story house at 34th and Campbell seemed an improvement on other facilities where Kathy's mother had stayed over the years.
"When I went to see Mom, I could tell she'd had her baths, was getting her meds, and her clothes were clean," Kathy recalls. "It was so much better than other places she had been." Carroll Manor, however, was hardly as regal as its name.
The exterior seemed symbolic of the neglected lives of the indigent, mentally ill residents who wandered its rooms or wheeled down its halls. Paint curled from exterior walls. Rickety air conditioners jutted from drafty windows. Norma shared a tiny room with another schizophrenic woman on the second floor.
"She had to share a bathroom with everybody else on the floor," Kathy recalls. "There must have been at least ten people on that floor, and I never saw more than one bathroom." The facility was licensed by the Missouri Division of Aging to care for as many as forty residents, and the census was frequently near capacity.
Residents slipped outside sometimes to smoke cigarettes on the stone porch that faced the residential street of the Midtown neighborhood. Norma had stood on the porch herself many times, smoking, gazing down the street in anticipation of a visit from her daughter. Those visits, however, were as unpredictable as Norma herself.
"There were many times I'd go to see Mom, and she'd be rambling on about things like witches' fires. Or she'd talk about a snake pit or somebody named 'Handy,' Kathy says. "It was very disturbing to see this woman who had so much charisma, warmth and compassion go off into a world of her own.
"There were times when I'd try to engage her in conversation, and all she could do was say, 'Yeah,' and stare off into the distance," Kathy adds. "Sometimes all I could do was just sit with her for a while. She knew who I was and that I was there, but it was as if she was off in another world." Sometimes Norma's symptoms eased, and the two women could talk. One afternoon, they sat in Kathy's car, a refuge of privacy from the crowded house. Norma was visibly upset.
"What's wrong?" Kathy asked.
"I'm ashamed of the way I am," Norma said quietly, looking away.
"She was afraid I wouldn't love her anymore because of [her mental illness]," says Kathy. "I told her that no matter what, I would always love her. That she was my mom and she should never feel ashamed in front of me."
Kathy and her brothers brought Norma to their homes on holidays. She'd talk sometimes about how she might someday get her own place. She would have her kids and their families over for dinner, and times would be good again. Kathy had long since let go of the childhood fantasy that her mother would get well, but for her mom's sake she played along.
"I knew she probably wouldn't be able to ever live on her own, but we enjoyed thinking about how it would be if she could have her own place again," Kathy says. "Just like we were always hopeful for a cure [for schizophrenia]. Unfortunately, she didn't live long enough for either."
When Kathy got pregnant in 1998, Norma was excited. "When that baby gets here, we're going shopping!" she'd tell her daughter, laughing. The two women needed to believe that, at least in those few moments of conversation, Norma could be the doting grandmother, spending money on her daughter's new baby. After Kathy had the baby in March 1999, her new family obligations temporarily limited her visits. She got out to see Norma once or twice a month and called every week or two. On Mother's Day, Norma's family -- which included Kathy, her two brothers and their spouses and children -- celebrated together. Kathy visited Carroll Manor on August 21, Norma's birthday, and called her again in early September. Then a few weeks passed before Kathy phoned Carroll Manor on November 3 to arrange a visit.
"Is this her daughter?" a nurse asked. Someone would have to call Kathy back. A few minutes later, Kathy's phone rang. Frank Carroll Jr., owner and administrator of Carroll Manor, was on the line. He had bad news. There would be no more visits with Norma, he told Kathy. She had died -- a month earlier on October 2 -- peacefully in her sleep.
"Why didn't you call us?" Kathy asked.
"He told me, 'I'm sorry. I thought you'd been contacted. If I had known her guardian hadn't contacted you, I would have contacted you myself,'" Kathy says.
"That's when it hit us," recalls Mitch. "It had been 31 days. Where was her body?"
But the family would have no opportunity to view the body for a final goodbye. Norma's body had been cremated two weeks earlier. The public administrator's office had given the funeral home the number of Norma's half-sister, who had been listed as next-of-kin in 1983, when Norma was first declared incompetent and Kathy was a child. No one from the public administrator's office contacted the half-sister to check whether Norma's children were still in her life.
"I didn't know I needed to give the public administrator my phone number," says Kathy. "Every place that Mom ever lived had our phone number and address in case of emergency."
Kathy says she gave her number to the staff at Carroll Manor long ago, even wrote it and her address in a directory, at the nurses' request. But Frank Carroll Jr. denied having had the Wright's telephone number, says Mitch. Mitch and Kathy had no idea that Norma had even been moved at some point from Carroll Manor to another facility owned by Carroll, Blue Ridge Nursing Home, where she subsequently died.
Although the 52-year-old woman had died suddenly, no autopsy was performed. Four months after Norma's death, Mitch and Kathy were still searching for answers. If Norma had been on the brink of death, why hadn't she been admitted to a hospital? Why wasn't Kathy notified of her death? Why had there been no autopsy? And why wouldn't Carroll release her medical records?
Kathy, who became executor of her mother's estate in 2000, requested Norma's nursing-home records from Carroll, but he refused to provide them, she says. "As executrix of my mother's estate, I have full, legal rights to those records," Kathy says. She also left several messages with Norma's case manager with the public administrator, trying to obtain all of Norma's records from that office, but she says those calls were not returned.
"We wanted to find out exactly what happened," says Mitch. "That's the only thing we have left of her. It may seem trivial, but that's all we have."
Jackson County public administrator Wood was unable to locate Norma's file before the Pitch's deadline. According to Wood, staffers were unaware that Kathy and her brothers had remained involved in their mother's life. Yet public records from the Jackson County probate court reveal that at least one case manager had spoken with one of Norma's daughters-in-law in 1992 about Norma's condition and placement.
Records suggest that the county gave little individualized attention to Norma. The law requires that a case manager from the public administrator's office visit each ward at least once a year and complete a preformatted one-page report. One such report filed during Norma's stay at Carroll Manor lists her eyes as brown.
"My mom had very blue, blue eyes," Kathy says. "How do you visit with someone and not even know what color eyes they have? If they would have been as involved with her as they should have been, [case managers] would have been very aware that we were going up there to visit her."
According to a petition filed with probate court for final compensation to the public administrator's office, Wood is reported to have "met with [Norma's] family and staff regarding notification of ward's death and other issues" on February 8, 2000.
"We never met with anybody from the public administrator's office," Mitch says. "The case manager never even called us back." Wood herself admits that there had been no meeting between her staff and Norma's children.
"I'm very certain I've never met with the daughter and very certain she's never met with me," Wood tells the Pitch. But Jackson County taxpayers were billed $145 for the alleged one-hour meeting. Wood doesn't know why her office billed for a meeting that never took place and attributes the notation to a clerical error.
Wood also insists that her office had no record of Kathy's telephone number or indication that Norma's daughter had been involved in Norma's life at all.
"I would think if you were actively involved, you would have made yourself known to that person's guardian," Wood says. "We latch on to any family member we can, who is willing to invest in care and supervision of these folks. I just wish we'd have known who [Norma's children] were before this happened," she says. "We are thinking, feeling people here, too. To think that someone's mother could die and go off and get cremated without her children knowing about it is very sad."
On October 1, 2001, two years after Norma's death, Kathy Wright, as executor of Norma's estate, and her brother, David Hunsucker, filed a wrongful-death lawsuit against Frank Carroll Jr., Carroll Manor, Blue Ridge Nursing Home, a mortician and a crematory. According to the lawsuit petition, Norma had suffered from a chronic respiratory illness "which was left undiagnosed and untreated and ultimately led to her death."
Soon after, Kathy received another surprise. The state of Missouri filed a claim against Norma's estate, demanding reimbursement for $274,117 in Medicaid assistance that Norma had received over the years. Any lawsuit settlement awarded to Norma's estate would go toward paying that debt.
Carroll Manor remains at 34th and Campbell, now surrounded by a black iron fence topped with spikes. "We've only got three people living here right now," a nurse told a Pitch reporter from behind the locked gate. During the brief conversation, three people stepped outside to smoke on the porch.
"I really have no comment," Carroll told the Pitch, and would not allow a reporter to tour the nursing homes where Norma had stayed.
On the chilly afternoon of November 8, 1999, Norma's three children and their spouses huddled around a small cross adorned with carnations, draped with a blue "MOTHER" banner. No one from Carroll Manor or Blue Ridge Nursing Home attended.
Norma's life had been stolen years before, when schizophrenia took hold of her in her teens and refused to let go. Yet her children, too, had refused to let go, and now were left with nothing but ashes buried in a cemetery and questions that nobody would answer.
"I think about how awful it must have been for her in those last moments," Kathy says. "She didn't get to say goodbye to anybody. I'm really glad that the last phone call we had, my very last words to her were that I loved her."