From The Oregonian, October 1, 1998 – not available elsewhere online
Twice, she lost her son.
The first time was in 1996, when Michele Grussmeyer‘s oldest child, Wade, sensitive and hard-working, turned irrational and hostile. During the next year, the Milwaukie High School graduate severed friendships, beat up his brother, lost jobs and repeatedly ran away from home.
His personality became unrecognizable, his mother said. He feared that people were after him. He heard voices when others heard silence. And he threatened suicide.
In May, she lost him forever. Police found his body on a bed in a homeless shelter on Burnside in downtown Portland. He was 22.
Michele Grussmeyer hid her son’s illness for months. At first, she didn’t tell anyone that he called himself the “devil’s child,” had a demon tattooed on his back, then obsessed about having it removed.
She began to cope, she says, when she started talking about their experience. When she helped write her son’s obituary, she wanted everyone to know that schizophrenia, not only a drug overdose, led to his death.
By talking about mental illness, Michele Grussmeyer hopes that treatment can be improved and the stigma eliminated. She wants her story to help other families who are enduring what she calls “hell on Earth.”
Losing a child to mental illness “is like a color you can’t describe,” Grussmeyer said. “It scared me. Every time I thought it couldn’t get any worse, it did.
“I miss him terribly, but I don’t miss the sickness of the last two years. When I think about him, I try to think about who he was before.”
No single factor causes mental illness, said Dr. William Wilson, associate professor of psychiatry at Oregon Health Sciences University. Like diabetes, a disease caused by the body’s inability to produce insulin, mental illness is a chemical imbalance. And like diabetes, it can be controlled.
One of every 20 Clackamas County residents suffers from a significant mental illness, such as bipolar disorder, depression, schizophrenia and obsessive-compulsive disorders, said Susan Johnson of Clackamas County Mental Health. About 2,500 adults receive mental health and addictions treatment from the county annually. Drugs mimic illness Drugs and alcohol, used by about 80 percent of mentally ill people, are the byproduct of the disease and mimic some of its symptoms, such as hallucinations and personality changes, said Johnson, director of the county’s adult day treatment programs.
Grussmeyer thought her son had a drug problem, and she confronted him. Soon, symptoms of the illness emerged. After drug treatment, he was clean for six months, but his hostility continued, she said. Now she thinks he used heroin and cocaine to numb the emotional pain of schizophrenia.
In Oregon, patients undergo separate treatments for their addiction and mental illness. Johnson, other mental health officials and Clackamas County parents want a unified treatment program incorporating all aspects of a person’s care. Some state officials are pushing for that at the legislative level, she said.
Grussmeyer thinks that if drug treatment and mental illness professionals had worked together, they would have diagnosed her son’s illness earlier and treated him more effectively.
Yet the treatment options for mentally ill people are limited, Johnson said. In Clackamas County, more than 500 people vie for the 96 beds in county treatment facilities, group homes and respite centers with 24-hour supervision and care. All have long waiting lists. More than 1,000 who receive services from the county need subsidized housing.
During a crisis, there are few options. When Grussmeyer caught her son using heroin , he barricaded himself in a bedroom and threatened suicide. She called a psychiatrist, who said her son had to be removed from the house. Because there were no immediate care beds available, Wade Grussmeyer was sent to a shelter.
“I looked in his eyes, and I knew I’d never see him again,” his mother said. She called daily, but confidentiality laws prevented the shelter staff from giving her information. He never called home.
On a Tuesday, a police officer arrived at her door. Wade had died the previous weekend of a drug overdose.
Care becomes a burden
Nationally, 4 percent of the population — more than 10 million people — has a serious mental illness, not including dementia and Alzheimer’s, according to estimates from the Clackamas County Mental Health Department and Wilson of OHSU.
Fifteen percent of those people commit suicide as a result of their disease, Wilson said. The others spend their lives trying to control erratic behavior, mood swings and altered perceptions.
The people who love the mentally ill are burdened with the care they require and the stigma of the diagnosis. There is no cure, but for many treatment is effective.
Judy Redler‘s son was 5 when teachers said he was too immature for kindergarten. The Redlers, looking for reasons behind his irrational anger, took him to counseling. Teachers said he had a learning disability. Others said nothing was wrong. One counselor suggested she take the boy camping.
When Redler began teaching special education classes, she identified the symptoms in her son.
“The more I knew, the more I knew he wasn’t showing signs of special needs,” Redler said. “We weren’t thinking mental illness. It wasn’t until years later that we knew he was hearing voices.”
After 15 years, Redler’s son was diagnosed as schizophrenic. Now at 34, he hears voices, can’t hold a steady job and needs help with household chores.
But he is stable, thanks to medication. He no longer runs away or hits others. He lives on his own in a private, county-subsidized apartment. Fourteen years after the diagnosis, Redler said they are the lucky ones.
Having a diagnosis is both comforting and devastating, Redler said.
Like most parents, Redler denied the diagnosis in the beginning. She blamed her husband and herself. Now, as an advocate for the mentally ill and an active member of the National Alliance for the Mentally Ill-Clackamas County, a support group affiliated with a national group of the same name, she knows no one is to blame.
Symptoms vary
Although a genetic link indicates that mental illness is more common in families with a history of disorders, about 40 percent of people with mental illness, such as the Redlers and Grussmeyers, have no history, Wilson said.
“The diagnosis is a bit like a Chinese menu,” he said. “There are various combinations of symptoms that come out in certain illnesses.”
Usually, symptoms of bipolar disorder, schizophrenia and other significant mental illnesses don’t emerge until adolescence or early adulthood, when people struggle with identity issues, Wilson said. A trigger, which doctors haven’t identified, sets off the illness. To family members, it seems as though the person has changed overnight.
Families are likely to attribute behavior changes to stress or rebelliousness and turn to school and marriage counselors, ministers and friends before calling in a psychiatrist, he said. Sometimes the condition persists for years before they find the appropriate help. Patients frequently have more than one mental disorder, and treatments change accordingly, he said.
Those with schizophrenia — an estimated 2 million people nationally according to the American Psychiatric Association — experience altered perceptions and false realities. They may have delusions, which are unreal ideas firmly fixed in a person’s brain, and hallucinations, where they see and feel things that don’t exist. Most hear voices, but some do not, Wilson said.
“Internally, they are hearing a voice that is every bit as real as us speaking, but they have no way to distinguish what is real and what isn’t. Their circuits get crossed,” he said. “Imagine trying to grow up and develop and live in this society when you can’t hear what is real and what’s not real.”
People with depression feel despair, loss of self-esteem, apathy and fatigue. Bipolar disorder, also called manic depression, includes those symptoms combined with periods of euphoria, increased activity and changes in sleep and appetite patterns.
The tripod approach uses medication, psychosocial counseling and family counseling to effectively treat patients, Wilson said. Patients learn to cope with daily life, the medication stabilizes them, and the group helps them feel connected.
“Medications now are very effective,” he said. “There is still no cure, and most people are left with some disability, but they are much better with treatment than without.”
A judge can determine whether a person is a threat to himself or others and have that individual legally committed and hospitalized, but it is difficult to prove and not a long-term solution, Redler said. Many patients are hospitalized multiple times.
Costs of care Mental illness also takes a toll on families financially. Medication can cost hundreds of dollars a month. Private insurance plans cover some of the costs, and many mentally ill adults in Clackamas County are insured by the Oregon Health Plan, Johnson said.
People without insurance or a supportive family usually end up on the streets or in jail, she said. Of the estimated 4,500 homeless people in Clackamas County, about 35 percent are mentally ill, she said. That means there are 1,575 mentally ill on the streets.
“We need to look at our use of jails and prisons,” Wilson said. “There are a lot of people in jail from mental illness who aren’t receiving treatment. Our jail beds increase, and our mental health beds decrease. People who are disruptive in society end up in jail instead of in treatment.”
Between 5 percent and 10 percent of mentally ill people are prone to violence, he said. Most do not pose a risk to society; instead, they become victims of a social stigma.
“The more we learn, the more we understand what’s going on, and it is so pervasive,” Johnson said. Statistics from the National Alliance for the Mentally Ill-Oregon show that one in five families have a mentally ill member.
“I can’t imagine getting through life without getting touched by mental illness in some way,” Johnson said. “It does not mean you are disabled for the rest of your life. In many people, there are periods of problems, but you don’t have to be labeled crazy to have mental illness.
“The stigma is a lot of mythology and fear that mental illness means less control or that you are lazy. All of that mythology is simply not true.”
Viral infection precedes illness
Joel, 26, a military-trained electronics expert and high school graduate, doesn’t tell people he’s got what he describes as “a schizotype disorder.” The illness, triggered two years ago after a viral infection, causes irrational and sometimes obsessive behavior, such as running around stomping on people’s toes.
Medication stabilized his behavior. His mother manages his money. He has difficulty forming relationships and needs structure. He lives in a Clackamas County-subsidized apartment building for people with mental illness. He attends church, cooks for himself and does odd jobs.
“I have some highly qualified skills,” he said. “I don’t work for cheap.”
He wants to earn a college degree and buy a home one day. This year, he’s taking a college math class. Dressed in baggy green shorts, a striped polo shirt and a baseball cap pulled over his close-cropped hair, Joel said he knows his illness is invisible to most people. He worries that people will take advantage of him if they find out.
During the 40 years Mavis Cook, 66, has been clinically depressed, she was married, raised children, taught 4-H and Sunday school, and led Scout troops. She is easily hurt and often cries, sometimes for hours, about such things as her son going to kindergarten. In 1980, she was diagnosed as mentally ill.
“Sometimes you just wish you could go to bed and never wake up,” she said. Now Cook, who lives in the same building as Joel, uses medication and a strict routine to help her overcome the despair. She likes to garden, walk and baby -sit her grandchildren.
“If anyone should be afraid, we should be afraid of the people outside,” she said. “People shouldn’t be afraid of us. It’s just ignorance and fear. When mental illness comes to them, they will understand there is nothing to hide.”