Stop Blaming Me for my Daughter's Mental Illness

An article posted on April 12th by The Huffington Post - Canada:

By Susan Inman (pictured)

As the parent of someone with a severe schizoaffective disorder, I'm used to being viewed with suspicion. Sometimes the pathologizing gaze occurs in unexpected places. Following the publication of an article I wrote for B.C. Teacher about the importance of educating staff in schools about mental disorders, a fellow teacher asked me if I knew what we'd done to cause my daughter's illness.

The unjustified suspicion of mental health professionals can be even more damaging. When we took our floundering teenage daughter to a credentialed counseling psychologist, we knew nothing about severe mental illnesses. As it turned out, neither did she. Her training included no material on psychotic disorders. Instead, it focused on psychodynamic theories, which look for the causes of current problems in people's early childhood experiences. Her misguided assumptions, fed by her training, led to chaos in the early years of our daughter's illness and to an unnecessarily long and dangerous psychotic episode.

Even with recent decades of robust research in neuroscience, parental caregivers of people with psychotic disorders soon learn that their interactions with the mental health system will be filled with blame. Many mental health clinicians in Canada, like our daughter's counselor, have had no science-based training on schizophrenia or bipolar disorder. Too often their interactions with families weaken the bonds that the illnesses have already frayed.

Psychiatry, for most of the 20th century, used the theories of Freud, which were never based on evidence-based research, to develop elaborate ways of blaming parents for schizophrenia. The Canadian Psychiatric Association now explicitly describes schizophrenia as a treatable brain disorder that is not caused by poor parenting.

Our relationship with our daughter's psychiatrist has been extraordinary. I believe it is responsible for her unexpected recovery. When the psychiatric team at Vancouver's St. Paul's Hospital first met her, she was one of the most severely psychotic teenagers they had ever seen. From the time that one member of this team, our daughter's current psychiatrist, began to work with her, he listened carefully to our input as we navigated the arduous path to her stability.

Even with this history of mutual respect, my husband and I were stunned recently when we were discussing strategies for managing any difficulties that might emerge during an upcoming trip. He stopped the discussion, looked at us, and said, "You guys are such great parents!"

I'm immersed in a community of parental caregivers in Vancouver and have been asking if anyone has ever been told anything like this. The answer is, "Never." These friends, who constantly inspire me with their energy, dedication and resourcefulness in advocating for their struggling children, find it hard to imagine hearing this kind of supportive response. Instead, my question is usually greeted with yet another account of the wounding of families by the mental health system.

Some parents do receive much-needed support from their own family physicians, who also provide primary healthcare to their often unstable sons and daughters. For many years, both my husband and I have freely vented, grieved, and tried to problem solve with the informed and compassionate help of our family doctor.

In recent years, the Canadian Psychiatric Association and the College of Family Physicians of Canada have begun an active collaboration including an annual Shared-Care conference. Much of the focus has been on helping family physicians become more knowledgeable in responding to the serious mental illnesses they are increasingly being asked to manage.

The upcoming Shared-Care conference in Vancouver offers richly informative sessions for family physicians. However, I don't see any sessions that provide family physicians opportunities to share their often considerable expertise in helping parents survive their daunting tasks. Fortunately, this kind of conference does invite informal communication on just these kinds of overlooked topics. Since family caregivers for people with severe mental illnesses save the healthcare system money, new ways of supporting them are well worth considering.

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NAMI Applauds New Report on Caregiving

A December 17th news release from the National Alliance on Mental Illness (NAMI):

Arlington, VA — The National Alliance on Mental Illness (NAMI) praises a new report, Caregiving in the U.S. 2009, which offers a revealing portrait of the nearly one-in-three American adults who serve as a family caregiver.

The study is based on interviews with 1,480 caregivers chosen at random and offers a national profile of people caring for adults, the elderly and children with special needs. It follows similar studies conducted in 2004 and 1997, but for the first time, caregivers for children, as well as those caring for adults over the age of 18, were surveyed.

The report echoes the findings of NAMI’s own depression survey and schizophrenia survey, which include the perspective of caregivers for people living with these serious mental illnesses. All these reports suggest that caregivers face daily stresses that can impact their own health and other relationships. For example, NAMI’s depression survey, released in November, found that while almost one-half (48 percent) of caregivers for people with depression have been diagnosed with depression themselves, only about 25 percent were engaged in treatment at the time of the survey.

“We know from our own studies that caregivers make significant sacrifices to care for their loved ones living with mental illness,” said Michael Fitzpatrick, NAMI executive director. “The findings of this new report will help us anticipate the needs of caregivers so that we can improve NAMI’s education and support programs.”

NAMI offers a variety of peer education and support programs, including those specifically for caregivers.

Family-to-Family is a free, twelve-week course for family caregivers of individuals with severe mental illnesses. The course is taught by trained family members and more than 115,000 family members have graduated from this national program. The course is also available in Spanish.

NAMI Basics is an education program for parents and other caregivers of children and adolescents living with mental illnesses. The course is taught by trained teachers who are the parent or other caregivers of individuals who developed the symptoms of mental illness prior to the age of 13 years.


About NAMI:

The National Alliance on Mental Illness is a non-partisan organization with 1100 state and local affiliates, dedicated to improving the lives of individuals and families affected by mental illness. Dedication, steadfast commitment and unceasing belief in NAMI's mission by grassroots advocates have produced profound changes.

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