They enter the course as strangers, drawn together by one purpose: to better understand their loved ones with mental illness and help them to recover. At the end of the 12-week course, they emerge as family. Since 1991, the National Alliance for the Mentally Ill (NAMI) has linked families through its Family to Family Education Program (FFEP), which is offered to the public at no cost.
NAMI is a nonprofit, grass-roots advocacy organization for patients, families, and friends of people with mental illness. About 210,000 people belong to the organization, which is based in Arlington, Va.
The course is taught in 46 states through local NAMI affiliates. Family members congregate in community centers, hospitals, health clinics, and, since 1997, VA hospitals to learn about mental illness (see story at right).
The course is led by family members of people with serious mental illness. They teach their peers-other family members- about what to do when someone is experiencing a psychotic break or is suicidal, or how to care for and protect a relative with mental illness without taking too much responsibility for him or her, for instance.
During the course, which meets for two and a half hours each week, the teachers often reach into the depths of their personal experiences while dispensing wisdom about good communication strategies, medication side effects, and myriad other topics.
Teachers use a course manual developed by a longtime NAMI member and psychologist, Joyce Burland, Ph.D. The curriculum includes topics such as the etiology and prevalence of major mental disorders such as schizophrenia, bipolar disorder, major depressive disorder, panic disorder, and posttraumatic stress disorder. By the end of the course, family members can recite the names of a long list of medications and understand how neurotransmitters work, as well as better appreciate the importance of empathy.
According to FFEP Director Lynne Saunders, family members learn "how to advocate for the needs of their loved one" in the last session of the course. Saunders noted that thousands of FFEP graduates have become NAMI members.
Eleanor Melcher and her husband, Orville, have been teaching the FFEP course for four years at the Louis Stokes Cleveland Department of Veterans Affairs Medical Center in Brecksville, Ohio, outside of Cleveland. They are the parents of a grown son with paranoid schizophrenia.
"With knowledge, there is hope and strength," Melcher tells her students, many of whom are as frightened, frustrated, and hopeless as she once was.
"Our son's mental illness had a horrendous impact on our family," she told Psychiatric News. "Between the time of his first psychotic break as a teenager and his diagnosis at the age of 30, there were many years of uncontrollable behavior," she recalled.
Melcher explained that many family members who sign up for the course struggle with "feelings of entrapment" regarding their loved ones with serious mental illness. "They may say, 'I have to deal with this mental illness for the rest of my life, and I won't have a life of my own anymore.' But we offer them hope," she said, by explaining that new medications make it possible for many people with mental illness to rejoin society and function independently.
Melcher serves as an example of hope. She, too, once felt trapped by her son's mental illness, but as a one-time student of the course, she applied everything she'd learned about establishing boundaries so her son "could take responsibility for his illness." She said many people may be overprotective of their loved ones with mental illness by keeping them at home, for instance, when they are capable of living independently. Such overprotection "causes them to stay sick longer," she said.
Once family members learn about what can be expected of their loved one and stop handling all of his or her responsibilities, Melcher said, the patient can more quickly recover.
"My son is now standing tall-he lives in his own apartment and can care for himself. We can enjoy our lives more as a result," Melcher said.
Melcher said she teaches her peers about empathy-about "walking in the shoes of a person with mental illness." Although her son's mental illness has caused incredible disruption within the family, she said, "people realize their loved one with mental illness has experienced so much more trauma" than many other people.
Of her experience teaching the course, Melcher said that each class has increased her respect for her peers, whom she referred to as "heroes."
"Everyone tells me, 'I wish I'd known about this course sooner,' " she said.
More information about NAMI's Family to Family Education Program can be found on the Web at <www.nami.org/family>. ▪