by Denise Lockwood, photo by Kat Berger Brenda Wesley, a petite 57-year-old woman, sits at the kitchen table of her Brown Deer home, her delicate fingers gripping a coffee cup on a grim Sunday afternoon. She stares at her cell phone, willing it to ring. But it doesn’t get the message. Brenda’s barely had any […]
by Denise Lockwood, photo by Kat Berger
Brenda Wesley, a petite 57-year-old woman, sits at the kitchen table of her Brown Deer home, her delicate fingers gripping a coffee cup on a grim Sunday afternoon. She stares at her cell phone, willing it to ring. But it doesn’t get the message.
Brenda’s barely had any sleep. She was up all night worrying about Betty Cahn, her 43-year-old younger sister. Betty’s been missing since the police took her to Rogers Memorial Hospital Saturday afternoon.
It’s the middle of January and freezing outside. Brenda thinks of the strange men her sister might be seeking out, the hotels she could be at, the streets she could be walking. She’s probably frightened and all alone. The images twist and turn in Brenda’s mind.
They had talked Betty into going to the hospital to get help for her bipolar disorder after she fell asleep with a cigarette and started a fire. The hole in her mattress was small, but Betty’s problems were as big as ever: taking narcotics she shouldn’t have been prescribed and slipping out of control. The two sisters fought, with Brenda pressing Betty to get help. Now Betty is out there, somewhere, high on prescription medications.
Bipolar disorder, a mental illness formerly known as manic depression, causes dramatic mood swings. Betty may bounce from periods of feeling incredibly high to intense melancholy, often with periods of normal mood in between. Severe swings in energy and behavior compound these changes.
As the education and outreach coordinator for the National Alliance on Mental Illness of Greater Milwaukee, Brenda knows there are thousands of Bettys in the world. Every year, as many as 12,000 people seek help at the Psychiatric Crisis Services center at the Milwaukee County Mental Health Complex, but that number has been steadily rising since 2002, according to the Medical Society of Milwaukee County.
Yet there has been no increase in funding, staff or space to meet this need. The complex only has 96 beds for emergency cases. As a result, the county turns many people away – about 80 percent of those referrals. Betty has tried many times to get admitted, only to be turned down, though the staff would send her home with a treatment plan.
Of those that do get admitted, their stay is ever shorter: The median length of stay at the hospital is now seven days, down from 16 days in 2000. Giving acutely mentally ill patients a one-week reprieve from the poverty, homelessness, drug and alcohol use and abuse of their lives isn’t enough to help them reclaim a normal life.
“If you turn out people this fast, the illness has not gone away,” says Dr. Jon Gudeman, former director of the complex. “There is not a straight line to recovery. Sometimes people need to return.”
A revolving door of mentally ill patients adds to the backlog of unmet needs in the community. Experts say Milwaukee needs more community support programs (CSPs) offering less acute care to prevent people from reaching a crisis level, which generally costs more to treat. “If you want to reform [mental] health care and want it to not cost so much, then we need to do a much better job at preventative care,” says Susan Dreyfus, a former executive with Rogers Memorial Hospital.
But Milwaukee has gone in the opposite direction. “Some CSPs have closed or drastically reduced their staffing levels, and, consequently, the number of patients they can serve has diminished,” the Medical Society notes.
Meanwhile, private hospitals feel they lose too much money treating uninsured or underinsured patients with mental illness and may refer them to the county complex, increasing its burden. That’s why Betty left Rogers Memorial Hospital, because it can’t bill for Medicaid coverage of the mentally ill (unless the patient is elderly or an adolescent). She’d been turned away from that hospital before.
Often, it is the police who confront the problem of what to do with a mentally ill person and who make most referrals to the county complex. Under state law, there must be a “substantial probability” of the person harming him/herself or others in order to be involuntarily admitted. An act of violence, a suicide note, a credible witness to a threat, a partially executed plan to harm one’s self or another – these might be evidence of probable harm. But in most cases, as it was with Betty, there isn’t enough proof. Then it is up to the patient to voluntarily seek treatment. And sometimes, Betty has been unwilling to do so.
And even if the patient agrees to treatment, the hospital may not offer it. West Allis Police Chief Mike Jungbluth says his department refers about 600 people per year to the county complex. But it will only take the “worst of the worst,” he says, sending the rest back out to community services. Which might not be available.
In 2008, Jungbluth and other police chiefs from the county met with John Chianelli, the current director of the county complex, to demand that more services be provided. Chianelli, with the approval of County Executive Scott Walker and the county board, made an agreement to provide county funding to refer patients to four health care providers: Aurora Health Care, Wheaton Franciscan, Columbia-St. Mary’s and Rogers Memorial.
Chianelli says this should reduce the load on the county complex: “The increase in community services has decreased the need for inpatient care.”
But Gudeman says the complex is still overtaxed. “They need one more inpatient unit,” he says. “This is filtering over into the psychological services center and there are just too many people there.”
He also notes the complex used to be certified by the Joint Commission on Accreditation of Healthcare Organizations, but that was dropped in early 2003, leaving it with no independent oversight. It’s all a result of underfunding. “That’s why we are making these mistakes,” Gudeman says.
Finally, Gudeman adds, Milwaukee lacks a continuum of care to prevent mentally ill people from falling through the cracks. “We need the inpatient system to be linked with the community services,” he says. “We need a system of tracking people to see where they are and help them get what they need.”
In theory, the county is mandated by law to help Betty or anyone else having a mental health crisis. In reality, there’s no guarantee help will be there when it’s needed.
“There never is,” Brenda says.
The Breaking Point
Brenda’s cell phone rings just after 2 p.m. She answers it, hoping for word of Betty. It’s Betty’s oldest daughter, Whitney, who says her mom is on a bus talking crazy and she doesn’t know what to do. By now, Brenda’s sister Kelly has stopped by, and Brenda asks her to call Betty. “She’ll answer your call. I don’t think she’ll talk to me.”
Kelly dials Betty’s cell phone number. After two rings, she answers.
“Hi. Where are you?” Kelly asks.
“I’m on a bus,” Betty says slowly. “I’m very tired. Very very tired. I just want to kill myself.”
After getting the address of Betty’s destination, Brenda and Kelly get into Kelly’s pickup truck. They’re worried about the narcotics Betty probably still has in her possession. Kelly drives to the Atkinson Apartments in the Rufus King neighborhood.
Ignoring the no trespassing sign on the bullet-hole-riddled door, Kelly is buzzed into the building and knocks on the door of Unit 1. Brenda waits outside in the truck.
Inside the apartment, Betty sits on a couch, slowly inhaling a cigarette. Her boots are wet from walking in the snow and her short hair is unkempt.
“It’s time to go,” Kelly says.
“I don’t want to go,” Betty says. “There’s nothing wrong with me.”
“Yeah there is. You were just saying you wanted to kill yourself, and I told you if we came here, we’d go get you some help.”
“I’ll go back to Brenda’s house, but I ain’t going to no hospital. All they’ll do is give me meds. They don’t care.”
“Brenda’s house is not an option. You messed up,” Kelly says, knowing Betty needs a medical doctor. “Now let’s go.”
“I don’t want to.”
“Do you want me to leave?” Kelly asks. “Because you tell me to go and I’ll go.”
Betty says nothing and looks straight ahead.
Walking out of the apartment, Kelly dials 911 and tells a dispatcher that Betty has threatened to take her own life and has taken an unknown amount of pills. Kelly is angry, but she tells herself Betty didn’t ask for this illness, this was just the hand she has been dealt.
Two Milwaukee Police officers arrive.
Brenda requests a crisis intervention-trained officer, someone experienced in dealing with mental illness who can help determine if an emergency detention is warranted. But the officers decline to call for one. Brenda and Kelly head for the warmth of the pickup while the two officers enter the apartment to talk to Betty.
An older woman wearing a purple housecoat peeks out the first floor apartment window to see what is going on. Minutes pass and the officers return. They tell Kelly and Brenda that Betty is talking reasonably, that she denies the suicide threat and they can’t make her get help.
“What are you telling me? That I’ve got to wait for a call from you to come identify a body? Is that what you’re telling me?” Kelly says. “She’s taken all these pills and she’s got to go to a hospital now.”
The officer takes a tube of ChapStick and coats his lips. The two sisters explain that they know Betty has taken too many pills, that she has a history of mental illness and threatened to kill herself just a half-hour ago.
“Check the bottles,” Kelly says.
“They were prescribed to her,” the officer says. “There’s nothing we can do if that script was prescribed legally.”
“But she’s a drug addict,” Brenda says. “She should have never been prescribed those meds in the first place. You don’t give narcotics to a junky that is mentally ill because she’s not going to take them as prescribed.”
“I leave here and she’s dead,” Kelly says. She’s crying now.
It isn’t until Brenda calls a Milwaukee Police lieutenant she knows, almost an hour after the initial call is made, that a crisis
intervention officer arrives. He explains to the other officers that sometimes a mentally ill person may have a knife up to his throat and then, without warning, change completely and talk to you very calmly and say, ‘Ohh, I didn’t say that.’
The officers continue to talk. Then Betty takes some more pills and swallows them. That does it. Betty is immediately arrested and taken away. In the parlance of medical professionals, she has been “chaptered” – declared a threat to herself or others under Chapter 51 of the state statutes, which regulates treatment of the mentally ill.
Betty is brought to St. Joseph’s Hospital to take care of her physical problems and is there for days. She remembers later going in a sheriff’s squad car and walking into the locked security door at the county’s Psychiatric Crisis Services center. A day later she was feeling better, and she asked to leave.
“No, you’re going to the hospital,” the doctor replied, and she was admitted to the county’s inpatient mental health hospital.
At some point, the police had read a statement to Betty describing her behavior back at the apartment. “Initially, they weren’t going to take me, but then I reached into my purse and grabbed a bottle of Xanax and I took like four of them right in front of him and the cop read the bottle and said, ‘It says to take one three times a day. Are you trying to kill yourself right in front of me?’ So that’s when they took me.”
But for Betty, it’s almost like describing some other person. “I don’t remember doing any of this.”
Life wasn’t always like this for Betty. Once, she seemed destined for stardom.
In 1986, Betty entered the Miss Black Wisconsin pageant and was crowned runner-up. “I didn’t even care if I won, I was just so happy to be there,” she says. “But when I got on stage and sang my song, I got a standing ovation.”
There, she met the pageant’s founder, Alyce Stoney, who also owned the Alyce Stoney Modeling Agency. Betty did local runway shows for a number of years before transitioning into a job as a makeup artist.
“I did my own makeup and the other models used to ask me, ‘Who did your makeup?’ They’d ask me to do theirs,” Betty says. “So I would charge a small fee and tell them to spread the word. I started getting business from it.”
She even did some acting, appearing in an episode of the television drama “Gabriel’s Fire” with James Earl Jones.
“I drove down to Chicago with a list of modeling agencies and dropped off my photo contact sheets, and a week later they said they needed someone to be in an episode,” she says. “I played a prostitute, but when I stepped out of that trailer and everyone stopped what they were doing to look at us, I felt like a movie star.”
But even amid these moments of success, her then-undiagnosed mental illness was starting to disrupt her moods. In vain attempts to compensate, Betty started abusing alcohol and, eventually, crack cocaine.
“I would be awake for days. I talked nonstop, would start cleaning and organizing things constantly, then I’d make all these plans and I would just go for days and months,” Betty says. “Then, just when I thought things were going good, I’d get depressed and couldn’t get out of bed. Then I’d lose that job.”
Brenda still has 8-by-10 photos on her wall of Betty from her modeling days. For years, Brenda just called her sister “Crazy Betty,” and kept their relationship at a distance. Brenda didn’t think of Betty as mentally ill. But things changed two years ago. Brenda got a phone call from Betty’s then-16-year-old daughter Logan saying she couldn’t take care of her mom anymore and that Brenda needed to come get her.
So Brenda came to Betty’s apartment and was met with a charred kitchen wall, the result of food that caught fire. Garbage was everywhere. Betty hadn’t bathed. For weeks she had jumped into rages with Logan. And she had taken so many drugs, she would lie in her bed and say, “I want to die, just let me die. I don’t want to live no more.”
Brenda managed to get Betty admitted to Aurora Psychiatric Hospital. But two days later, Betty left the facility in her hospital-issued pajamas with a sack of medicines no one knew how she would react to and returned to her apartment. When she was admitted, Brenda had asked the hospital to call when Betty was ready to be released, but the hospital staff failed to do this.
A week after her release, Betty called Brenda telling her she felt like dying. Shocked that Betty had been released, Brenda brought her to their sister Patricia’s house, and Betty stayed up all night cleaning and pacing – all signs she was in a manic episode.
She left the house on foot, still in her hospital pajamas, and walked into bars asking people for a ride back to her apartment. Brenda called the police, but they said they couldn’t detain Betty because she wasn’t threatening herself or others. They did talk Betty into seeking help voluntarily at the county complex. But when staff there asked if she felt like harming herself or others at that moment, Betty said no, and they let her leave.
That’s when Brenda accepted her sister’s mental illness. Betty traces her problems back to her childhood. At age 12, Betty was raped by a family friend, but received little support.
“My mother had a hard time believing her,” Brenda says. “But, really, I think my mother had a hard time believing anything, because at that time, she was drinking a lot. We all had our own demons we were struggling with.”
For Betty, it was a traumatic event: “That’s when I started drinking and smoking weed because it made the depression go away. And I stopped going to school because that got in the way of my using drugs.”
Things hit rock bottom in 1986 when Betty’s mother, Pauline Jones, died of heart complications caused by her own heavy drinking and use of prescription medicine. The next year, Betty tried to kill herself.
“I don’t even remember exactly how I tried to do it,” she says. “With all of the drug use, I really didn’t even mourn the death of my mom until the early 1990s when I was at the complex sitting in detox. Then all of these feelings just starting coming over me; it was a difficult time.”
Doctors at Good Samaritan Hospital told her she was chronically depressed, an incorrect diagnosis. Not much was known about bipolar disorder then, but the doctors put her on antidepressants, which made her more manic.
In 1990, Betty married Kevin Cahn, a Milwaukee police officer, but the marriage only lasted eight months. By 1995, Betty had two daughters. Her drinking and drug use dominated her life. She lost job after job and was evicted six times. For years, she lived with the grandmother of her niece’s boyfriend, and her two daughters lived elsewhere. Things were spiraling out of control and she didn’t know why. She knew she was depressed, but didn’t know she had bipolar disorder.
“One day, I just thought, ‘What am I doing? Why is it that my life is just so f–ked up?’ I couldn’t put two and two together because I didn’t understand what was really going on with me,” Betty says. “Now I know and I can kind of pinpoint where things are going wrong, how my illness affects me.”
But when things go wrong, she can’t get treatment. Betty has tried to get help more than 30 times at the county complex and Milwaukee’s private pay hospitals over the past 20 years. “I’ve tried so many times,” Betty says. “I tried to slit my wrist, swallowed a handful of pills.” In 1999, Betty found herself on the Mitchell Street overpass over I-94.
“I was ready to jump when someone saw me,” Betty says. “They grabbed me, put me in their car and waited with me until the sheriff’s department came to take me to the complex.”
But the hospital wouldn’t take her. It wasn’t an acute crisis, they said. They asked her if she felt like harming herself or others. “I already did that, that’s why I’m here,” Betty said.
She’s seen dozens of psychologists – ones that don’t look her in the eye, ones that misdiagnose her, ones that get it right but then refer her elsewhere, and ones that prescribe medications she’s not supposed to have.
Last year, Brenda took Betty to the Isaac Coggs Heritage Health Center at 84th and Silver Spring when she felt suicidal. But Betty, assigned to a doctor who could only see her on Fridays, was told to go to the county complex. There, she was denied targeted case management because they had her listed only as being a drug/alcohol addict and not having bipolar disorder.
Police call people who repeatedly seek care from the county complex “frequent flyers.” These are typically people whose mental health leaves them not stable enough to live within the community and not severe enough to warrant long-term care.
“Because she’s not laid out on the floor overdosing on meds, and she hasn’t hit anyone or threatened to kill someone, they won’t take her to the complex or an emergency detention,” Brenda says.
Just a few days before she disappeared from Rogers Memorial Hospital, Betty had gone to the Medpoint Family Care Center, where two doctors had prescribed a 90-day supply of Ativan, a 60-day supply of Lorazepam and a 90-day supply of Xanax because she told them she was having trouble sleeping, that she was anxious, had started menopause and was feeling extremely depressed.
They apparently didn’t check her medical and psychological history, Brenda says, because it specifically says to not give her antidepressants like Lorazepam. Those medicines make her high instead of leveling her mood, and that’s why she ended up out on the streets. Ativan and Lorazepam are known to increase drug-seeking behaviors in some patients.
“These doctors should have checked her charts,” Brenda says, angered. “Someone should go to jail.”
But Betty also knew what the pills would do to her. And she didn’t care. “F–k it,” she thought. Instead of taking one of each pill three times a day, she took handfuls of all of them.
Brenda is convinced that if Betty was given the support of targeted case management, with someone monitoring the medicines she was taking and making sure she was going to see her psychologist, then Betty could get her life going in a positive direction, hold a job, reconnect with her family and live on her own. Instead, Brenda keeps getting called to intervene.
“I’m so tired,” Brenda says. Before Betty’s disappearance, Brenda felt like she was on call repeatedly. “She called me and I was trying to play hard. I said, ‘You got to get this together.’ But how can I get her help if there’s no place to take her? If a hospital doesn’t take her and the complex doesn’t take her and she has no targeted case management, she’s going to die.”
The Road to Recovery
The hospital at the Milwaukee County Mental Health Complex feels like an asylum – antiseptic and unwelcoming. The walls are barren and the heavy, metal doors lock behind you. Betty feels incarcerated, she says, and hears patients screaming for help in the middle of the night. And she doesn’t like how other patients are treated.
A man lies on the floor in the middle of the hallway and Betty tells a nurse she thinks the man fell out of his room. The nurse goes to get some blankets and covers him on the floor. Betty says that no one picks him up. He just lies there as people step over him.
Another woman, who had a stroke, hollers from her room, “Please somebody come help me, I got diarrhea, I got to go!”
Betty asks if someone is going to take the woman to the bathroom, but the staff leaves her in the room for hours.
Chianelli doesn’t believe Betty’s accounts, but declines to answer specific questions about how people are cared for because of privacy laws.
“There are staff here who are working very hard to help people who experience severe mental illness,” Chianelli says. “Do I feel we have good policies in place to make sure people are getting good quality care? Yes, I do.”
After Betty was arrested at Atkinson Apartments, her sisters tried to get her into Aurora Psychiatric Hospital, but it declined. Though Aurora and three other private hospitals have a contract providing county funding, they typically turn away people who are chaptered because the county complex is better-equipped to handle them.
For the first three days at the county’s hospital, Betty stays in her pajamas, sleeps until noon, takes her meds, watches television and eats her lunch. A social worker tells her she needs to participate in two to three groups during the day in order to get an off-floor pass, which will allow her to go downstairs or step outside. Some of the afternoon groups focus on occupational therapy, coloring, crafts, music and exercise.
After a few days, Betty starts to get up earlier. She takes a shower and puts her clothes on. She feels stupid at the group sessions, she tells her social worker. But Betty starts to understand that the more they see her participate, the more they believe she is getting well, and the sooner she can leave.
“Something hit me in there – I am my own advocate. For the last two years, I put my trust in these doctors and I put my trust in my sisters. Then the bottom falls out and I’m tired of bumping my damn head.
“And I said to myself, ‘Betty, you got to pull yourself up by the bootstraps and do what you need to do for you,’ because I don’t want to be another mental illness statistic. I don’t want to drink. I don’t want to do drugs. I just want a different life because my life has been so f–ked up for so long. It’s like I’m starting to see that I’m catching a break.”
The break comes in the form of a court review required by Chapter 51: The judge instructs Betty to adhere to her treatment plan. This means no drinking, no drugs, no suicide attempts, or she’ll be committed to inpatient treatment for up to a year.
County staff call on Service Access to Independent Living, a community-based program. A social worker and psychiatrist from the program meet with Betty seven days after she was initially admitted, and they talk about getting her targeted case management and appointments to see a psychiatrist at St. Joseph’s Hospital.
“It’s like someone else has control over my life. They are telling me who I need to see, who my caseworker is – it’s like they’re my baby sitter,” Betty says. “I was having a problem with it in the beginning, but when I met my targeted case manager, I was the first case she ever had, so I decided to give it a second chance.”
The case manager, a woman named Davide Donaldson, calls Betty every day and asks if she’s out of bed, if she’s eating, if she’s ready to do a few chores. Betty could’ve been ordered back to the complex for as long as a year if she hadn’t complied with the treatment plan. But she wants to do it, she says. She realizes she needs targeted case management to help her stay consistent.
“I don’t feel so isolated now,” Betty says. “I feel like I can depend on her.”
Betty feels like she’s getting more respect from her family because she’s trying to help herself and hasn’t been using drugs or alcohol. She wants to do something that will make them proud, like getting a job. She has reconnected with the Miss Black Milwaukee Pageant, and they seem interested.
Still, she worries. She’s feeling well now, but how long will it last? Even if she gets a job and goes back to school, will she wake up one morning and say, “F–k it?”
“I’m scared to death to even try because I never finish anything I start,” Betty says. “Lately I’ve been praying. I just didn’t get why God was so far away from me…
“But then I realized I’m the one far away from him. He ain’t gone nowhere.”
Denise Lockwood is a Caledonia-based freelance writer. Write to her at email@example.com.
Dumping the Mentally Ill
When Brian Gumma first hallucinated 30 years ago, it felt like an electric shock ripped through his body. He sensed a field of energy in front of him and saw a globe on his desk turn into a ram’s head. “Are you Satan?” he asked. The ram responded, “No, Satan would be a much more powerful demon than me.”
Gumma left his Dallas, Texas, apartment that day and did not return. His wanderings eventually landed him at the Terrell State Hospital in Austin, where he was institutionalized. There, Gumma was routinely beat up by other patients. In 1983, he applied for a writ of habeas corpus and was released.
Three years later, after more wandering, Gumma was accepted at a state-run mental health hospital in Chicago. But after three days, he was given a brown bag lunch, a supply of medications, a bus ticket to Milwaukee, and instructions to contact a psychiatrist once he arrived.
“That’s how they get out of paying for a person who is chronically mentally ill, which would cost thousands of dollars,” Gumma says. “They dump them from one state to another.”
Jon Gudeman, the longtime director of the Milwaukee County Mental Health Complex until September 2002, says Gumma is right about the problem. “States would try to get rid of patients they didn’t want.” In flagrant cases, he adds, the county would send the patient back to the sending state.
Gudeman also says local private hospitals would dump patients to the county. But Paul Mueller, chief operating officer at Rogers Memorial Hospital, says some private hospitals can’t bill Medicaid for reimbursement because they do not have federal status as an institute of mental disease. And those that can bill face a situation in which the reimbursement rates only cover about half of the cost of care.
“The law is focused on public safety, not around augmenting treatment,” Mueller says.
As for Gumma, once in Milwaukee, he was able to eventually get outpatient treatment at the county complex. For 10 years, the staff worked with him on being less withdrawn and more focused. Gumma went to the complex five days a week for occupational therapy. With the help of medication, therapy and a strong support system (Gumma got housing and a Social Security check for his disability), his delusions became a rarity.
But in 1996, the funding was cut and the outpatient program was shut down. This has left many who might be better served as an outpatient instead asking to be admitted to the county’s mental hospital because no other care is available. “Years ago, it was hard to avoid being hospitalized,” Gumma says. “Now it’s hard to get your foot in the door.”
But Gumma’s life had a happy ending. He started working at the Grand Avenue Club, a nonprofit “clubhouse” run by people who have mental illnesses that offers everything from social programs to employment help. He now travels the world talking about the clubhouse movement and works at helping people find jobs.
“Normal people like to work. A lot of people with mental illnesses like to work, too,” he says, “if we could find more companies to take us on.”
“We help them become the responsible citizens they want to be,” says Rachel Forman, director of the Grand Avenue Club. “We don’t see people in terms of illness and incapacities; we see them as people with potential.”