By Milly Dawson
Reprinted with permission from Schizophrenia Digest, Fall 2005
Janet D. Grossman, a retired schoolteacher who lives in Sag Harbor on Long Island, recalls a visit that she made with her son, Kurt, to meet a new therapist.
"It was before his first hospitalization. He was 19 then and at a point when he was acting wild, driving at night while wearing dark glasses," she says. "We all went to see this therapist together, Kurt and my husband and me. She kept pushing Kurt with all kinds of questions. He didn’t want to talk. He ended up jumping out the window."
Thankfully, he didn’t go far.
"It turned out that there was some kind of balcony there," Janet explains. "Kurt knew that but my husband and I didn’t."
Kurt reacted strongly to an intrusive line of questioning from a person he didn’t even know. His action underscores a recurring theme in the discussion about communication between consumers and their caregivers - what approaches work effectively and which don’t. And if even a trained professional doesn’t always know the difference, how do families find ways to reconnect with their loved ones without pushing them away?
Just as everyone needs a sense of adequate personal space, so do people with schizophrenia. However, consumers often have heightened sensitivities that mean they need more space and a slower, more measured approach to communications than other people.
Dr. Robert Paul Liberman is a distinguished professor of psychiatry at the University of California at Los Angeles, where he focuses on communications issues that affect people with severe mental illnesses such as schizophrenia. Social or communication skills are, he says, "extraordinarily important as a protective factor against disability and for recovery. Fortunately, social skills can be learned. Even the most severely disabled persons can make some degree of improvement in … communicating their needs, desires and feelings."
"The level of a person’s social communication skills is one of the most important predictors of how well a person with a mental disorder does during his or her lifetime coping with their disorder - no matter how serious that disorder is," Dr. Liberman says.
Protective factors such as social competence, a calm and supportive family environment, the right medication and access to the full range of proven support services can help people with schizophrenia live more satisfying lives.
Having these elements in place eventually helped Kurt establish a stable life. Though he dropped out of the prestigious college he’d been attending when he first fell ill, he earned an associate’s degree in computer technology and has worked in that field. Communication problems arose when he worked, though, and these led him to make frequent job changes. He is now on disability but he hasn’t let that stall his recovery. Kurt participates regularly in activities at a mental health center called The Clubhouse and lives in his own apartment.
He visits his parents but seldom stays in the room they have for him. His mother reflects, "Communication between us is an easy back-and-forth at this point. It used to be a more careful weighing of words."
"The vast majority of people with schizophrenia can benefit from systematic training to improve their communication skills and their families also can benefit, especially if they participate with their relatives in learning the skills of medication and symptom self management," says Dr. E. Fuller Torrey, associate director of laboratory research at the Stanley Medical Institute in Bethesda, Maryland.
Larry S. Baker and his colleague, Karen Landwehr, direct a program that helps people with mental illnesses live the fullest lives possible. Based at the Comprehensive Mental Health Center in Gig Harbor, Washington, it’s called Pebbles in the Pond. Baker recalls attending a meeting where a consumer angrily objected to talk of recovery. "‘Recovery! What the hell are you talking about?’ she demanded,” he said. "‘Those of us who have this illness don’t recover like a person who’s had surgery. We keep dealing with the illness. What helps us get better is being able to bounce back and to keep bouncing back.’"
Improved communication skills serve as a foundation for such resiliency, Dr. Liberman says. His methods for enhancing consumers’ social skills are now used all over the world. His training materials have been translated into 22 languages. They address very specific skills, such as getting along well with relatives, making and keeping friends, enjoying close intimate relationships and working at a job.
Here are steps that relatives of persons with schizophrenia can take to help mentally ill family members - and themselves - cope better with the illness and develop resilience for the long haul:
Ken Furuyama was diagnosed with schizophrenia at age 22. "It’s hard to communicate at the outset of the illness, because the consumer isn’t really sure where the fine line is between reality and created reality, between what (he thinks) is happening and what is really happening," says Furuyama, now 33 and living in Acton, Massachusetts. "That can persist even if the person takes their medication."
Family members often don’t know how to approach a loved one with schizophrenia. Too often, their reticence winds up deepening the isolation many consumers experience. "Yet the more you understand how a person with schizophrenia is thinking," Furuyama says, "the more realistic your expectations will be and the better you will get along."
Education will help you avoid giving certain hurtful messages that unthinking relatives often do send out, Baker says. "A key thing is to resist the temptation to give simplistic answers to your loved one. People will tell a person with this disease, ‘All you need to do is get a job, clean up your act, find a better group of friends.’"
"Families who don’t understand the process of this illness see their lovely child, who had such great promise, holed up in his or her room or in the hospital or walking around talking to themselves and they are desperate to find a way to turn it around. But the messages they send can be very hurtful."
One consumer, a 32-year-old man who lives in Newark, New Jersey, experienced just such messages from his ambitious parents.
"They didn’t understand a lot about the illness," he said. "They were pushing me to become successful and creating unrealistic scenarios."
Instead, he pursued his own goals. He now wins high ratings from his superiors at a blue-collar job he’s held for years. He also does regular volunteer work on behalf of elderly and physically disabled people.
He also gets along comfortably with his parents. His mother and father have participated in National Alliance on Mental Illness (NAMI) family sessions and learned more about his disorder. "They are very supportive in a number of ways and they have stopped pushing me," he says.
He passes on this useful advice from a woman who has a relative with schizophrenia: "Look at the person. Talk in short, adult statements. Be clear and practical. Give one set of directions at a time with no options."
Psychiatrists explain that many people with schizophrenia have trouble assimilating several instructions at once. Giving three or four at once can lead to confusion. Give instructions one at a time, or write out a list with all of them. The same goes for questions, which are most effectively asked one at a time. Avoid even commonplace sequences such as, "How are you? Did you have a good day?" Ask each question and listen to the reply.
In some cases, face-to-face communications aren’t the most effective. One mother Dr. Torrey met said, "Leaving requests by way of memo or over the telephone seemed to work better than face to face. I’m not sure why."
Digital communication works well for Ken’s mother, Jean Furuyama, who lives in New York. He lives in Boston with three people he met at a residential treatment community called Gould Farm. "We communicate best by email," she says.
"(Consumers) can be listening to you although they are looking at something else," says Dr. Torrey. Learning to use eye contact in the ways that most people do is, however, one of the skills often covered in communications training programs.
As for physical expressions of support, hugs and kisses, Baker offers this advice: "Offer them but ask permission first. Permission is so important."
The disorder can create barriers that require careful navigation as well as patience. "Often, paranoid people will shun the people who help them the most,” Ken Furuyama says. “It’s a function of the illness. People will say ‘I want to drop my meds’ or ‘I don’t want to see that psychiatrist. He thinks I’m crazy.’ But after awhile, you realize that they’re there to help you."
Fred Frese, PhD, has schizophrenia and also treats other consumers. Frese, an assistant professor of psychology in clinical psychiatry at Northeastern Ohio University’s College of Medicine, says relatives may lose patience when they are trying to have a businesslike conversation about a certain topic, like a planned outing, and their loved one strays from that theme. "With respect for their dignity, bring the person back to the topic," he advises. "Say, 'We’ve got to get our bag packed now. Let’s look at this checklist … .'"
As for delusions, experts agree that it’s pointless to argue about them. If, for instance, a consumer says he sees bats in the garage, a caregiver might respond, "I know that you believe there are bats out there. But I was in the garage a minute ago and I didn’t see any." A person can also honestly say something such as, "I think your brain is playing tricks on you because of your illness."
One key rule: Do not treat delusions with sarcasm or humor.
Kevin Bradley of Auburn, Washington, helped his wife, Julie, in this matter-of fact way. Years ago, voices she heard told her she was worthless and didn’t even deserve to speak. As a result, she says she was nearly silent for two years. He gave her a judge’s gavel with which to silence those voices. It worked. Today, Julie works in a field that demands that she speak a great deal. She is a volunteer mental health chaplain helping other consumers.
Julie also benefited from Larry Baker’s program, taking courses in areas such as affiliation and assertiveness. "Great stuff," she says. "The teacher would explain a skill like getting needs met or getting information. Then we would practice on each other. We role-played. The material was helpful and I could apply it immediately in my own life."
Jean Furuyama sums up the key messages she took away when she and her husband learned about communications, among other things, by joining the Family to Family program run by NAMI: "You have to listen to them. You have to let them go their own way while always guiding them to get help, participate in treatment and use the drugs," she says. "And you have to always try to be kinder, as kind as you can be."
Milly Dawson, MS, specializes in writing about health and wellness. Her work has run in Good Housekeeping, Woman's Day, Newsweek and in many medical journals. She lives in Maitland, Florida, with her husband, two children and one dog.Visit www.schizophreniadigest.com for more from Schizophrenia Digest