Out of the Maze : Family’s Long Ordeal May Help Others Cope With Mental Illness
David Weisburd’s mental illness struck without warning when he was a sophomore at Harvard University. The brilliant, handsome young man was suddenly tormented by inexplicable voices that he could not silence, voices that threatened to kill him.
“David took me to the television set and said, ‘Look, Dad, don’t you see what they’re doing; the whole world wants me dead,’ ” recalled Dan E. Weisburd. He said his son then “ran about 15 or 20 feet and smashed his head into the front door. The front door’s solid. It made a crack like nothing a baseball bat’s ever done to a ball.”
For Weisburd and his Toluca Lake family, this began a baffling, costly and dispiriting odyssey into the mental-health system. In the past eight years, David, 27, has seen 17 psychiatrists, has been hospitalized 15 times and has been jailed twice. He tried to kill himself once. His parents spent $150,000 on treatment in the first three years alone, buying mostly frustration.
“We were the sanitarium,” Dan Weisburd said of those nightmarish initial years of grappling with his son’s schizophrenia. “I was feeling that he wasn’t getting any better being here; we were getting worse. It was tearing the family apart.”
Weisburd, a film maker, has drawn on his family’s painful experiences, as well as those of others, to produce an educational brochure called “Families Know About Coping With Serious Mental Illness.”
The 27-page booklet, to be distributed statewide in coming months, is an innovative effort to spare other families some of the anguish that invariably accompanies a loved one’s break with reality. It offers no easy answers; rather it attempts to inform relatives that they are not alone, and to encourage them to seek help through the public mental-health system, private therapists or a well-established network of other families.
“The need for the brochure is there in full force,” said Assemblyman Bruce Bronzan (D-Fresno), chairman of the Assembly Health Committee. “These are just the basic kinds of things that families should know and oftentimes don’t know as they wander around for years in a bewildering maze of medications and programs and streets and jails trying to deal with their loved ones.”
At least 15,000 copies will be given to doctors, therapists, mental-health clinics, members of the clergy, schools and others who might have contact with families of the mentally ill. The work was a joint effort of the California Alliance for the Mentally Ill, a family advocacy and self-help organization, which published it, and the state Department of Mental Health, which paid for it. It cost $10,000 to produce and $16,000 to print.
Weisburd, 55, readily acknowledges that “there isn’t a clear road that you can take to find a successful experience” when confronted with incurable illnesses such as schizophrenia or manic depression and the seemingly intractable problems they pose. But in the pamphlet he urges relatives to chart an alternative path to despair:
“Find professional mental-health help and become involved in the decision-making process. Take care of yourself; you are a victim of this illness too. Hate the illness, love the person. Change your expectations. Realize that you and your ill family member, working together, can often change what feels like a hopeless situation.”
The publication relies heavily on graphics and quotes from the hundreds of families that Weisburd interviewed in an approach that drew on his experience in making documentaries. His goal was to make it accessible to the less-educated; an audio cassette version in Spanish is also planned.
“We discovered you can’t just get to a good hospital, find a competent psychiatrist and know that everything will be taken care of,” says one relative in a section on how to find a qualified doctor who will work with the family. “It’s simply not how things work. We had to learn to become the responsible decision-makers and to ask the right questions.”
The booklet is intended as a starting point in that direction. It includes a list of suggested reading, the address of the California Alliance for the Mentally Ill and the phone number of the California Self-Help Center (1-800-222-LINK), a clearinghouse for local mental-health support groups.
Support Essential
“You need the support of others who really understand what you are going through, even though it’s natural for you to want to retreat from social contact,” Weisburd wrote. “You are not alone!”
The brochure is part of an effort, exemplified by the fast-growing National Alliance for the Mentally Ill, to increase the role of families in treatment and lobbying for those often too sick to do so themselves. This movement reflects a gradual but dramatic shift from medical orthodoxy, which long held that parents were responsible for chronic mental illness and thus excluded them from consultation and care.
“It’s changing to some degree,” said Dr. J.H. (Rick) Massimino, an Orange-based psychiatrist who was a consultant on Weisburd’s booklet and specializes in promoting family involvement in treatment. “They’ve been excluded by a medical system that is very slow to change, very slow to include them and by a system that has considered them adversaries instead of allies.”
Massimino said he became aware of this during his medical residency when his son was born deaf. He said he discovered parallels between the “lack of awareness and understanding of the hearing-impaired” and a dearth of information available to parents of the mentally ill. Both sets of parents “need to be re-parented” to aid their children, he said.
Massimino leads a weekly support group for 60 to 80 families of the mentally ill. As an assistant clinical professor at UC Irvine’s School of Medicine, he is also attempting to introduce courses to teach residents “about family contact in a new and extensive way.”
This is a far cry from long-accepted psychiatric dogma that said parents, especially cold and demanding mothers, caused serious mental disorders. In recent years, research has found that schizophrenia and manic depression, a similar malady marked by severe mood swings, are biological diseases of the brain that may be inherited.
The stigma, however, has been slow to recede. Often, “the shame and guilt immobilizes” parents, according to Chris Amenson, a San Gabriel Valley clinical psychologist who works extensively with families and was also a consultant on the booklet.
Amenson cited a schizophrenic inmate he visited at the Los Angeles County Jail last week who was once honored as America’s top Boy Scout and was attending Stanford University when his illness hit. The man was in jail after striking someone; he said he did so at the behest of voices in his head.
“You can imagine the family’s grief at all of the potential this young man had,” Amenson said. “A lot of parents say it’s much worse than if he died because it’s as if he died every day” or their hopes for what he would become are shattered again each day.
An estimated 10 million people nationwide suffer serious mental illness; about 2.2 million are schizophrenics. Their most extreme symptoms, which include hallucinations, disordered thinking and withdrawal, can be controlled by anti-psychotic medications, though these often have debilitating side effects. Some patients improve spontaneously as they age. But there is no cure.
Until the 1960s, the seriously mentally ill were warehoused in institutions. A combination of court and public policy decisions resulted in their release into the community.
Two decades later, critics maintain that medical, housing and vocational programs remain inadequate, a charge given prominence recently when Los Angeles County announced plans to close some mental health clinics because of budgetary constraints.
Families “are always left holding the bag,” Massimino said. Nearly half of all schizophrenics live with their relatives, according to the National Alliance for the Mentally Ill. In addition to the emotional toll, this can impose a crushing financial burden; insurance reimbursements are notoriously low for psychiatric care.
Those who live in board and care homes, meanwhile, must survive on a Supplemental Security Income check of $678 a month. Others wander the streets, receiving little or no help.
Membership Growing
The National Alliance for the Mentally Ill began in California in 1978 as one step to fill the void. Nationally, the group’s ranks have doubled in the past year to 70,000 families. California has the largest chapter with 9,000 families.
Assemblyman Bronzan, one of the Legislature’s experts on mental health, calls the Alliance “the single most important thing that has happened in the care of the mentally ill in California in the last 20 years.” He praises it as well-organized, thoughtful and effective.
Weisburd, an intense, articulate man with a graying beard and forceful manner, epitomizes this assertive new family involvement. He is first vice president of the California Alliance and, by all accounts, an extraordinarily committed and resourceful advocate.
Dr. D. Michael O’Connor, director of the state Department of Mental Health, has clashed with Weisburd on occasion but calls him “untiring, relentless” and “a man of true genius and strength.”
Weisburd’s most enduring achievement may turn out to be his instrumental role in passage of a 1988 law that O’Connor says “could change the way mental-health services are delivered in California.” It seeks to transform what many experience as a fragmented and confusing revolving door of hospitals, clinics, board and care homes and jails.
The measure calls for three to six pilot projects aimed at meeting patients’ individual needs as they arise. In each project, a team of 10 professionals will be assigned 150 seriously mentally ill participants. They will devise a program of complete treatment and care for each patient and contract with public or private agencies for these individually tailored services.
Members of the team will be available on a round-the-clock crisis basis. Their success with each patient will be measured by such criteria as the number of days the person was hospitalized, able to live independently and employed.
Combined Approach
Bronzan, one of the bill’s sponsors, calls it “an extremely sensible, coordinated, accountable approach to taking care of the needs of the total individuals.” He also said Weisburd “deserves the lion’s share of the credit.”
The measure, which will cost $9 million this fiscal year, grew out of a 1987 state Task Force for the Seriously Mentally Ill. Weisburd spearheaded formation of the panel by Lt. Gov. Leo McCarthy, chaired it and was a driving force behind turning its recommendations into law.
Weisburd and his wife, Elaine, also have made several award-winning videotapes on mental illness and have been featured on national television and radio. Their often critical testimony of the system’s shortcomings is grounded in their family’s experiences.
At North Hollywood High School, David, the oldest of three children, played tennis, dated regularly and had near-perfect college board scores. He had accrued so many college credits that Harvard University invited him to skip his freshman year; he aspired to be a psychiatrist.
Savings Exhausted
That was before the voices. He’s been diagnosed as suffering from various chronic disorders but most frequently paranoid schizophrenia. After his parents exhausted most of their life savings for private treatment, David entered the public mental system about five years ago. Dan Weisburd describes this as Dickensian, “an experience of neglect.”
He recalls finding his son lying in a puddle of his own urine at a Van Nuys board and care home, his arms and legs rigid from the medication he was taking. David was once expelled from a seemingly progressive residential program in the middle of the night, penniless, and was arrested when he asked a woman for money to call his parents. He has been beaten up several times and was assaulted in a rape attempt in jail, his parents said.
His experience in mental hospitals, meanwhile, has been so traumatic that when a judge gave him a choice of committing himself to an institution or six months in jail, he responded: “I’ll have to think about that,” his father said.
David recently described the system as “degrading toward human dignity.” He said a mentally ill person’s lifeline is a loving support group, such as his family.
Knife, Candles
But his stints at home have also included frightening episodes. He appeared one night at the foot of his parents’ bed with a kitchen knife, saying people were coming to kill him. Another time the Weisburds had to call police to hospitalize David when he ritualistically lighted candles throughout the house.
“It’s so scary,” David once said of his illness. “It’s like the forces of fate throwing you in a ditch and saying, ‘Climb out of there, sucker. I dare you.’ And you grab onto a rope a therapist throws at you and then you pull on the rope but it’s too difficult to pull yourself out of the ditch, you see. You need people grabbing hold of your hand.”
Today, David lives at Beverlywood, a board and care facility, spends afternoons at the nearby Beverlywood Resource Center, a program he calls the best he’s encountered, and visits his family weekly. As part of his therapy, he plays the guitar; music has always been a refuge from his private demons.
Following a stable, happy weekend at home, David recently spoke hopefully, with flashes of eloquence and humor, of leaving the mental health system and getting a job. But he displayed numerous nervous mannerisms, and later babbled on the back porch, communicating with voices that only he could hear.
“David was the highest of flyers and I know he can’t get back to where he was,” said Dan Weisburd, who recently underwent heart surgery. “I just hope he can have a life where he isn’t tortured daily as he is now, where he can have a life of some accomplishment, not to be made to fail and feel worthless and end up as some obscenity in the street.”
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