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Lessons from Loss


Virginia Holman

Parents who lost son to suicide work to help others understand mental illness.

When Pat and Clancy Must teach the National Alliance for the Mentally Ill's free, 12-week, Family to Family class twice a year in Wilmington, they understand the experience of family members who have a loved one with a severe mental illness. Like every teacher in the Family to Family program, the Musts have taken the 12-week class and received in-depth teacher training from the North Carolina chapter of the alliance. And each teacher, the Musts included, has a family member with a severe and persistent mental illness.

Mr. and Mrs. Must's introduction to mental illness began with a call one night in 1992. Their 25-year-old son Stephen overdosed in a failed suicide attempt. He was hospitalized for two weeks, diagnosed with bipolar illness (also known as manic-depressive disorder), prescribed a mood stabilizer and discharged. Because Stephen was an adult at the time of his hospitalization, his parents were given little information about his disease.

"If your child is an adult, they barely tell you anything," Mr. Must said, his voice rising with each word. "They say they can't."

The Musts were surprised by Stephen's diagnosis. Their son was a successful engineer and an accomplished rock climber. In retrospect, Mrs. Must says, Stephen's excited phone calls in the middle of the night, his restlessness, his constant jottings on napkins, envelopes, any available scrap of paper, not only showed their son's creativity and voracious intellect, but early signs of his mania.

For five years following his hospitalization and diagnosis, Stephen was prescribed lithium (a mood stabilizer) and then Depakote (an anti-epileptic drug that's also a mood stabilizer). Like many people with bipolar disease, Stephen's illness impaired his insight and he was sometimes unable to believe he was ill. As a result, he often failed to take his medication.

Steven became paranoid and delusional - and then he lost his job.

In 1998, the Musts got a second call. Stephen was hospitalized again. He was found wandering, dehydrated and delusional. His family insisted that he come home where they could assist in his care.

At about the same time, Mr. and Mrs. Must discovered the alliance's Family to Family course almost by accident. "There was a tiny mention in the Dayton, Ohio paper," where they were living, Mr. Must said. "We learned so much those 12 weeks and learned there were other people in our community who had mental illness in their family.

"Lots of people don't want to talk about it, or are scared to talk about mental illness," Mr. Must said. "They're ashamed. They think it's their fault."

Though many people with severe mental illness experience varying levels of recovery with medication and support, Stephen was among those who continued to decline despite his and his family's best efforts.

He rented an apartment near his parents and a climbing club in Dayton. He saw his doctor. His parents looked after him. But Stephen's adjustment to his illness proved to much for him to bear.

In 1999, he hanged himself in his apartment closet with his climbing ropes.

Mrs. Must found him.

"I guess I spent the rest of that night just screaming," she said.
Stephen was 33 years old.

When Mr. and Mrs. Must relocated to Wilmington in 2000 to be near their daughters and grandchildren, they discovered that the Family to Family class here was in need of teachers. So they answered a call to service. They start teaching their fourth class in New Hanover County Sept. 9. Each class has about 20-25 participants.

The course covers symptoms of schizophrenia, major depression, bipolar illness, panic disorder and obsessive-compulsive disorder, how to get through crisis periods, problem-solving, self-care, causes of brain disorders, a review of medication and how to fight stigmas associated with mental illness.

According to Marvin Swartz, head of division of Social and Community Psychiatry at Duke Medical Center, Family to Family is a valuable program for people with a mentally ill loved one.

Dr. Swartz says that many mental health providers fail to educate family members because "of antiquated notions of confidentiality. They think they have just a one-on-one relationship with the patient." Dr. Swartz also points to what he calls a mental health care crisis as a reason for little patient-family education. "With shortened hospital stays, providers are in crisis mode and may not consider the long term needs of the patient and the family," he said.
And since "families are often the de facto 24-hour case managers for their loved one, courses like Family to Family that help educate family members about mental illness and the mental health programs in their area are essential," he said.

Educated families can help patients understand what they are going through as they cope and adapt and recover from the illness.

And Family to Family provides something that many family members may not have: A community of other people who have a mentally ill loved one.

For Stan and Kitty Oathout of Southport, whose daughter was diagnosed with paranoid schizophrenia, knowing that there were other people going through the same thing was a comfort. "The other families provide information, relief, and community," Mrs. Oathout said.

Mr. Oathout said that the course destigmatized mental illness. "Before the course, I didn't understand that mental ilnesses were brain diseases," he said. "I thought mentally ill people were dangerous, that the disease had to do with family problems or the like. Family to Family educated us about medications, about good resources and not so good resources in the community."

"Getting good information really helps alleviate misplaced guilt, Mrs. Oathout said. "I stopped saying, 'I should have seen this coming; I could have prevented it; Maybe if I treated her differently.' What you realize is that severe mental illness is a brain disease and that it isn't anyone's fault."

Dr. Joyce Burland of NAMI designed the course in 1992. This year, Family to Family will have graduated 100,000 members across the nation.

"It's a huge achievement," Dr. Burland said. "I see such heroism in the participants of this class. It offers the opportunity to get closer to people who have been through the same experience of having a mentally ill loved one. And we know where the good services are and the good services aren't. It's a great resource. It allows family members to have a community and to feel more in charge."

A 2002 study of Family to Family conducted by the University of Maryland and funded by the Robert Wood Johnson Foundation found that people that took the class worried less, better understood their loved one's illness, and had a good idea of what strategies would help them communicate with their ill relative and their mental health providers.

Despite such achievements, Mrs. Must says she's amazed how many mental health workers seem not to have heard of NAMI or Family to Family. "I've gotten calls from social workers who've seen a course flier I put up on the grocery store bulletin board," she said. "I want families to know they're not alone. I want professionals to know about this wonderful resource."

These calls are the ones the Musts hope to receive.

Copyright 2004, Used with permission from the Wilmington Star-News.

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