When "Jake Johanson" had his first psychotic break on his 21st birthday, his parents worked hard to find a psychiatrist and medications that worked for his schizophrenia. For the next three years, he was a model of recovery. He lived with his parents and took his medicines every day. He ate nutritious, regular meals. He graduated from college and got a full-time job.
"We couldn't ask for a more normal son," his mother recalled.
Two years ago Johanson moved to Monterey for work. Over time, he stopped communicating with his family. He lost his job and possession of his car; then he couldn't pay his rent.
"We had not seen or heard from him at all for the past 1 1/2 years," his mother recalled. "In October, we were notified by his landlord that he had been evicted. We went down to bring him home, but he did not want to come back."
Johanson's parents faced a hard reality known to many families with severely mentally ill loved ones: They don't have control over their son because he is an adult. And when the loved one forgoes treatment for the illness and ends up living on the street or becoming incarcerated, family members say, that lack of control turns to anguish.
Over the next several months, Johanson's parents sought to keep in contact with their son. They drove to Monterey every weekend and learned that he was sleeping in the sand dunes, shielded from the elements only by a thin sheet. At one point, they filed a missing-persons report.
One day, they found him at a recycling center.
"He was so paranoid and symptomatic that he told us to go away," she said.
Johanson's parents lobbied police to take him in on a 5150 hold a legal procedure allowing authorities to place persons involuntarily in a hospital for evaluation. But when police officers did a welfare check on Johanson, he was coherent and eating albeit junk food so he did not meet the criteria for a 5150 hold, police told the family.
"It was mind boggling. He has a mental illness. He has no insight into his condition," his mother said.
Johanson's parents again lost track of their evasive son. In mid-January, he was found sleeping in filth in an abandoned building, and he had lost weight, she said.
"It was a mess. When (police) saw that, they took him in on a hold. I felt such relief. It was the first time in months and months that we were able to help him. He was taken to the emergency room, and he had a bed to sleep in and a warm and nutritious meal. It was a prayer of gratitude," she said.
Johanson was taken to a locked institution in Sacramento the next day, but the relief his parents felt at knowing where he was didn't last. The Health Insurance Portability and Accountability Act (HIPAA) prevents hospitals from releasing any information about an adult's medical condition unless they sign a waiver; and their son has not signed a consent form, she said.
Johanson's mother believes the pendulum toward patients' rights has swung too wide.
"The privacy laws and HIPAA rights have gone too far when his parents, who are his only advocates, can't help him," she said.
No one wants to return to the days when people with severe mental illnesses were chained to their beds, say family members and health professionals. But some families want a greater ability to compel treatment for a loved one who refuses treatment, and they want less restrictive conservatorship laws.
But there are mental health professionals and patient advocates who reject those ideas. They say there are already laws to compel treatment in cases where people will harm themselves or others. And those with mental illness could be harmed more when constrained to undergo treatment they don't want, advocates say.
Additional laws restricting individual rights are not the answer, they argue, but greater funding for outpatient programs and community facilities that provide appropriate care is.
Thousands of Santa Clara County residents are hospitalized annually for a serious mental health issue, ranging from debilitating depression, threats of suicide or violence, mania and psychotic episodes caused by schizophrenia and bipolar disorder.
Throughout Santa Clara County in 2012, more than 6,500 people were hospitalized for a mental illness in private and public facilities, according to the California Office of Statewide Planning and Development. Of those, Stanford Hospital's emergency room saw 1,254 patients with mental disorders, or 3.9 percent of overall emergency room visits. The hospital admitted 794 patients with mental illness of all types and transferred 248 people to other hospitals, according to the state report.
The percentage was similar for El Camino Hospital in Mountain View. The emergency department
at the county's public hospital, Santa Clara Valley Medical Center, saw 12,886 mentally ill patients, which accounted for 17.5 percent of its overall emergency visits. It admitted 1,526 patients and transferred 2,250 to other facilities, according to the state database.
The majority of mental health admissions were for psychoses, the report stated. During fiscal year 2011-12, Stanford diagnosed 641 patients with psychoses; El Camino Hospital diagnosed 803 patients and Valley Medical Center 1,447.
Advocates and families hotly debate whether severely mentally ill persons, such as those with delusions, should have a right to choose or are capable of choosing their care.
Kathy Forward, who has a sister who has been hospitalized for delusional or psychotic episodes numerous times and who also has a mentally ill son, believes that many are not capable.
Forward is the executive director of the National Alliance on Mental Illness (NAMI) in Santa Clara County, although she emphasized that she was speaking for herself for this article and not for the organization.
Forward said the law makes it too difficult to hospitalize someone with psychosis.
"I strongly believe in people's individual rights. There are many levels of mental illness. But when that rationality, that reasoning is gone, we have to protect people," she said.
Forward's sister has been ill with schizo-affective disorder (schizophrenia and a mood disorder) since she turned 18. Her sister is compliant with taking her medications, but if they stop working, there is no reasoning with her, Forward said.
"She thinks she's clairvoyant and working with the police department. She will say that her boyfriend is a racist, and there are serial killers all around her. She has just been in the hospital two times in the past three months. She thinks she is pregnant. I can try to hope that if she goes to the hospital that someone will recognize she is ill and will treat her. She doesn't see anything is wrong," she said.
Since the Sept. 11 terrorist attacks, society has been less tolerant of delusional persons. Her sister's calls to the police have gotten her arrested, whereas before police would take her to the hospital, she said.
The stigma of mental illness plays a large role in noncompliance with treatment and acknowledgement of illness. And social ignorance of mental disorders adds to misconceptions, she said.
Mental illness should not be treated any differently than dementia and other brain disorders that impair cognitive function, Forward said.
"It's a brain illness. When people get Alzheimer's or dementia, we don't let people walk on the streets. ... With any other severe illness, they would ask, 'Where's your family?' But not with mental illness. It's not only the person but families are also destroyed by the illness," she said.
Palo Alto resident Gloria Bush, 72, lived on the streets for 15 years. Last Dec. 21, she died of hypothermia in Heritage Park.
Her daughter had sought for years to help her homeless mother.
Bush was hospitalized at age 18 for a mental illness and again in mid-life, her daughter said. She led a meaningful and functional life until she had another psychotic break in her 50s. She lost her job, and she ended up on the street.
When Bush became homeless, she was guarded with people, but she initially accepted help from strangers and family. She stayed in shelters, took their gifts of clothing and money, and she had hopes of holding down a job and getting her own apartment again, her daughter said.
But gradually, she became harder and harder to reach. She stopped staying in shelters, turned down housing when it was offered, wouldn't accept financial assistance, and refused to draw on her Social Security benefits or apply for Medicare, her daughter said.
Bush's daughter recalled her frustration as she tried to help her mother. Before Bush became homeless, her daughter called the Santa Clara County Medical Center's mobile mental health unit to get a psychiatric evaluation for her mother. The woman who arrived started the interview, but then Bush refused to talk further. The mental health professional confirmed there was definitely something wrong with Bush, but she didn't have enough to diagnose her, her daughter said.
"The biggest challenge I faced with my mother's situation is that she refused any treatment. The fact that she denied even having a mental illness made treatment nearly impossible. Legally, unless she threatened to hurt herself or someone else or was gravely disabled, no one could force her to accept treatment," Bush's daughter said, referring to the 1972 Lanterman-Petris-Short Act, which states people must be considered a danger to themselves or to others, or they must be "gravely disabled" and unable to feed, clothe or shelter themselves.
"I felt frustrated and helpless. It was heartbreaking. It was difficult just accepting that this wonderful, kind, strong woman who raised me was mentally ill," her daughter said.
Bush's daughter began a long process of consulting with mental health professionals, homeless outreach workers, National Association for the Mentally Ill representatives and the local police about conservatorship over her mother.
"No one thought it could happen in my mother's case. It would have required the police taking her to Valley Med for a 72-hour hold, and then the health professional recommending conservatorship before it could go to court. Some thought my mother would be happier having her freedom, even though she was living on the street, than confined in a facility," she said.
Seven years ago, Bush cut off contact with her daughter.
When Bush's daughter and son-in-law came to Palo Alto to find her, Bush was at the nonprofit InnVision Shelter Network food closet, but she did not recognize her daughter. She called her daughter an impostor.
The family stayed in contact with outreach workers at InnVision Shelter Network. While workers checked on her welfare, Bush always refused offers for housing and other assistance, officials there said.
As Bay Area temperatures plummeted last December, Bush's daughter again called InnVision Shelter Network out of concern for her mother's welfare. Staff searched for Bush, but she was not found.
Bush died of hypothermia, lying on the ground next to her favorite bench, according to the Santa Clara County Coroner.
"If my mother could have received treatment early in her illness, it's possible that she could have continued the life she deserved. The longer she went without treatment, and the worse her illness became, the less likely she could ever live a 'normal' life again. Like many illnesses, early intervention is so important," Bush's daughter said.
Laws that protect an individual's rights are "extremely important," she said. "But in some circumstances, it does go too far. In my mother's case, I was unable to get conservatorship for her. A particular sticking point was the criteria for determining whether or not someone is 'gravely disabled.' Inability to provide shelter is one of the criteria, along with food and clothing. I was told that sleeping under a tree or in a doorway can be considered shelter, so my mother did not meet that requirement," she said.
Some mental health professionals think that compelling a person to take treatment may do more harm in the long run, except in cases in which someone poses a clear danger to themselves or others.
Momentum for Mental Health, the largest private nonprofit provider of mental health services in Santa Clara County, serves 3,800 people annually at multiple locations, including Palo Alto. Its programs include residential treatment that provides alternatives to hospitalization, assisted living and outpatient treatment programs that help mentally ill persons maintain independent living, and family support.
Momentum's outreach focuses on developing a strong rapport with the individual and building trust. Paul Taylor, president and CEO, acknowledged that trust can take years in some cases.
"I wish I had a magic bullet, single answer for you. There are some people, who out of anger and frustration, need to force people against their will and put them in a hospital. While I understand those feelings, there's a reason people don't want help from the system," he said.
There is a time and place when someone needs to be kept safe and monitored in a hospital setting, he said. But being handcuffed and put into a squad car or being hospitalized or given medications with severe side effects can be traumatic. Sometimes people have agreed to accept help, but then they've had frightening experiences, he said.
"It's about building a relationship with somebody. It is not a simple thing it's hard. People with severe mental illness are more like people without mental illness than not. What makes for a relationship is the same as for anyone. If you feel respected, if you feel listened to and you feel treated as an equal, you are more likely to trust someone. That's where you start. People have to be willing to talk to you.
"If someone is unwilling to talk to you, no matter how hard you try you won't succeed. You cannot win a food battle with a child unless you sit on them and pry their mouth open. You can't force them to swallow. It's the same thing it's like forcing a child," he said.
Some of the most severely ill people are capable of making choices just not the choices their families and others think they should make, he said.
Taylor tries to meet the person based on their wants and needs.
"We don't say, 'You've got bad judgment because you don't want help.' Instead, we'll bring a blanket and a sandwich. It doesn't matter if someone is ill or not. Everybody always wants something. It's not your job as a mental health professional to convince someone to adopt goals you think are good for them. It is your job to get them what they want. If someone who is unhoused wants to be a schoolteacher, you can help them to take the first step. You can ask what they think the first step might be. Maybe it's washing your clothes. If they stumble on a step, you never tell them it's a terrible mistake or say it's too ambitious," he said.
Brian Greenberg, vice president of programs and a psychologist at InnVision Shelter Network, said building relationships with clients and offering small incentives conditional reinforcement can slowly leverage relationships and encourage people to take housing and medical services.
"We give away a lot of things to get people on Social Security," he said. "You have to have a relationship with someone. They can become extremely untrusting after living on the streets for years."
There are no easy solutions to the complex situations that arise due to severe mental illness, said the Palo Alto parents of "John Rutherford." Diagnosed with schizophrenia at age 19, his deterioration became progressive with each psychotic episode, his parents said. By law, they could not force their adult son to take medication, and eventually they could not handle him in their home.
"We tried to keep him calm, but it wasn't possible. He would steal our money, get drunk, steal our car," his mother said.
Rutherford became homeless and wound up in county jails for petty crimes. In between, he stayed in board-and-care homes and did well while on his medication. The comprehensive care he received in these homes was largely good, and it helped to preserve his dignity. But the quality differed, his parents said. He grew dissatisfied with each location and moved from place to place, trying to escape his illness and always hoping a new environment would bring relief, his father added.
Often, they did not know where he was.
One day he showed up at 2 a.m., and his mother answered the door. She inquired why he was coming there so late, and asked if he wanted to take a shower.
Rutherford shook his head "no."
"I have to kill somebody," he said. He had never been violent, and his parents believe he came to them out of fear. Most people with schizophrenia do not act on their hallucinations, they said.
Calmly, his mother suggested that she should call the police. Rutherford agreed.
Police took him to Santa Clara Valley Medical Center.
"This time they kept him. They placed him in a long-term psychiatric facility in Santa Cruz. He was there for four months. It was a nice arrangement. You could visit, and if they behaved themselves, you could take them out for a burger. He was the best I'd known him since he was sick," his father said.
"He was taking his medicines and almost making plans for the future. We got our hopes up," his mother added.
Rutherford wasn't angry about his hospitalization, his parents said. But one month after his release, he disappeared again. Feeling better, he probably saw no need to continue taking his medicine, his parents said.
He committed a carjacking in Los Angeles, and he went to prison. His parents did not know about the arrest, trial or imprisonment until they received a call from the prison. Rutherford was in with the general population. A prison employee recognized he wasn't well and called his family for confirmation about his mental history.
Rutherford was transferred to another facility where he received treatment. When he was released in 2003, he took part in a special program for parolees with mental illness. He was 25 years old and was living in a residential facility in Redwood City.
Three days after he moved into his new home, Rutherford visited his parents. He was feeling good, he said.
His mother was impressed by the change.
"He eats my vegetable soup, which was very unusual, and he wants his picture to be taken. He said it was the happiest day of his life. He kissed and hugged me," she recalled.
Then Rutherford caught a train to San Francisco, where he died by suicide.
For his parents, there is a certain irony that after finding lucidity, their son ended his life, they said. Looking back, the couple felt they did everything they could.
But there could be changes to the system that would improve care for the mentally ill, they said.
"Unless there is evidence of abuse in the family, parents shouldn't be cut off. You know your kids and you love them," his mother said.
The greatest challenge is societal, they said, pointing to a lack of value placed on services to treat mental illness and thus a lack of funding.
"Everybody's in the same situation. You don't have public support. It takes collective action," Rutherford's father said.
"We're working against a real bad cultural problem and fashionable austerity," he added. "Nobody wants to be mentally ill. It's more of a stigma than cancer. Cancer is just bad luck. ... We're swimming against a very powerful tide. (People think that) 'If you're down and out, you deserve it.'"
But no one is very far from mental illness, he said, a notion he tried to instill in his son so that he might feel less stigmatized and perhaps be more willing to accept treatment.
"A tiny little tweak in that neurochemistry, and we're all ill," he said.
Staff Writer Sue Dremann can be emailed at firstname.lastname@example.org.
NEXT WEEK: In part 2 of this series on mental illness and its consequences for the ill and their families, the Weekly examines policies and laws regulating the treatment of mental illness.