Strength in Small Numbers, Sharing Hope Helps Rural Families Deal with Mental Health Problems

By Pat Bellinghausen

First part in an weekly series

LEWISTOWN – In after-hours quiet at the Carnegie Public Library on Main Street, seven men and three women pulled chairs up around a table flanked by walls of books and dark oak columns. Familiar faces all, they helped themselves to homemade cake and a carafe of coffee.

It might have been a book club or neighborhood task force meeting. But this group, ranging from young parents to senior citizens, gathered to share stories that hadn't been written and problems they hadn't been able to confide to their neighbors.

President Suzanne Hopkins started the monthly meeting of one of Montana's newest chapters of the National Alliance for the Mentally Ill.

"We're a very small group because we just got started a year ago," Hopkins said. NAMI-Lewistown counts about 15 families among its membership. "We were having separate family and consumer meetings, but there were not enough people, so we just meet once a month."

NAMI-Lewistown members are few in number, but they have found that few is better than none. The members share information, Internet sites, current events and concern for each other. People share things that have worked for them. They talk about medications.

Diane, a young mother who asked that her real name not be reported, told about trying to get a psychiatrist. Her local primary care doctor wouldn't prescribe psychiatric medication for her because of the complexity of her illness, which has caused her to attempt suicide. She called clinics in Great Falls and Billings and was told that no new Medicaid patients were being accepted. After she told Hopkins about her predicament, Hopkins called Deaconess Behavioral Health in Billings.

"What does it take to get in to see a psychiatrist?," Hopkins asked. "A referral from your doctor," was the reply. Diane got the referral and an appointment with a psychiatrist, thanks to some help from a NAMI friend.

"It would be so much better if a doctor could come even once a month. There would be plenty of patients," Diane said, noting that there are no psychiatrists practicing within 100 miles of her hometown.

Jill, another young mother who asked that her real name not be published, empathized with Diane's predicament. It takes a lot of energy to take on the system and make it work, she said.

"When you're feeling good, you can be kind of assertive. But if you are not functioning at all, it's hard to be an advocate for yourself," Jill said.

Overcoming stigma

That 10 people would meet in a public building to discuss their mental illnesses shows that rural residents can overcome some of the stigma associated with brain disorders. Stigma prevents many people from even seeking care. But the fact that most requested anonymity confirms that there is a long way to go before a conversation on schizophrenia is treated the same as a talk about cancer or diabetes.

Every person interviewed for this story from communities across central and Eastern Montana talked about the stigma of being labeled mentally ill. Everyone described local concerns for privacy that kept people from getting care or prompted them to travel to care in a larger city.

From Scobey, Esther Kramer, president of the Mental Health Association of Daniels County, said that people in her small town find it difficult to seek mental health care and want to make sure that, if they do get treatment, their neighors won't know about it.

"We're used to taking care of our own needs. It's very hard to say we need help," she said.

Kramer also is the county clerk for this county of less than 2,000 people scattered across 1,422 square miles of high plains. She said that people won't come to public meetings on mental health. Raising awareness and getting people into treatment requires a subtle, careful approach.

"Education has to be fun," she said. "It has to sneak in there and stretch their thinking."

Just outside her office, she keeps a mental health bulletin board stocked with informational pamphlets. Stress and teen issues seem to generate the most interest, judging from the materials that are picked up.

The Mental Health Association of Daniels County oversees a community emergency fund that helps local people with emergency needs, such as money for psychiatric prescriptions. In three months, Kramer had three calls for help. The local doctor refers people for help when needed. The family doctor is the town's only medical provider. Local mental health services are limited to one day a week when the Eastern Montana Mental Health Center sends a licensed counselor to town.

"Most people would rather go out of town. In a town this small, everybody knows what everybody else is doing. It makes it hard to go for counseling," Kramer observed.

Sharing information, encouragment

In Miles City, Helen Sampsel and her husband, John, founded a NAMI chapter in 1987. The couple has devoted the past 13 years to sharing information and encouragement with local families affected by serious mental illness. Mostly, their work is one family to one family. Nobody shows up for group meetings.

"I've given up on meetings," said Helen Sampsel, 70 years old and going strong. "It's mostly one on one. They'll invite you into their home and tell you their problems."

Helen Sampsel volunteers to work as a friend for some Custer County people who are the subject of involuntary mental commitment proceedings. She also serves as limited guardian for a few people from all over Montana who are hospitalized at Warm Springs. As limited guardian, she will talk with the individual by telephone and make recommendations on his behalf to the court considering action in involuntary commitment proceedings.

"I try to be an advocate for those who can't speak for themselves," she said.

The affect that mental illness has had on their own family sustains the Sampsels' determination to help others.

"After what we went through, it would be wrong for us not to help other people," said John Sampsel, a retired surgeon. However, to respect the wishes of their family member, the couple declined to talk about their own struggle for mental health care.

The Sampsels described Miles City and Custer County law enforcement officers as "very sensitive and very helpful" to the problems of people with mental illness. The county attorney sometimes calls on the Sampsels for help.

Despite a willingness to help, resources fall short of what people need to manage their mental illness in this community, the Sampsels said. The local hospital's "safe room," (which John Sampsel described as being "like jail cell") is rarely used because most local physicians won't admit psychiatric patients. That usually means a cross-country trip of nearly 400 miles one-way to the state hospital at Warm Springs for a person who may be involuntarily committed. There are no psychiatrists in Miles City, although many local people see Billings psychiatrists via telemedicine, and a child psychiatrist visits a local clinic two days a month.

Changes sought

Among John Sampsel's volunteer jobs is serving on the Montana Board of Visitors, a panel that periodically inspects mental health care facilities. Not all the problems and shortcomings that the board members identify are corrected, he said.

"We do sometimes have the power and the wherewithal to change some things, but we certainly aren't able to change all the things we want to," John Sampsel said.

What has to change?

"We have to have programs that meet individual needs," he said. The help has to take into account that half of the people with serious mental illness have no insight into their illness and that half or more of them "medicate themselves with drugs or alcohol" in an attempt to deal with the symptoms of their mental illnesses. Having mental health workers go out and check on clients in the community to make sure they are taking their medicine, eating right and otherwise taking care of themselves would be a big help to some people, the retired surgeon said.

The No. 1 problem of mental illness is the stigma associated with getting care, said Bill Kachner, a NAMI-Billings member who lives in Roundup.

Kachner and his wife, Lee, sheltered and tried to help troubled youngsters who were growing up with their sons in this small town. They still worry about other people's sons: There's one young Roundup man with serious mental illness who ran into trouble with the law and was sent to Montana State Prison. He can't return as a parolee to the hometown where his offenses are well known. Another young man has been hospitalized for an extended time in the Montana State Hospital.

"We can't ignore a problem and hope it goes away. But that's what happens when we expel someone and send them to prison," Bill Kachner said. "What do you do for a person locked in their own mind? You try everything and you keep on trying. There's no one thing that will work for everyone."

Used with permission of the Billings Gazette, copyright 1999