In my last post, I mentioned being lost in a research rabbit hole—I’m only halfway out by now. The research I’m doing is for the conclusion of a book manuscript that’s due to my publisher at the end of the summer. That may sound like a long time off, but between now and then is a two-week Alaskan adventure (Yay!!) and two visits from family: a sister- and brother-in-law and two teenage grandsons (Double Yay!!). I’ve also volunteered to take on some writing tasks for the local Indivisible chapter I belong to and have a memoir manuscript waiting to be published. The summer will be busy.
The premise of my book, Advocating for Mentally Ill Family Members, is that individuals with serious mental illness (SMI) should not be treated in isolation from their families. Some families are dysfunctional, of course, but for the most part, family support is essential for patients in managing their SMI. One major problem is that HIPAA law restricts family members from accessing medical records unless their relative expressly allows it. A person with SMI’s disordered thoughts may prevent this.
Parents of minor children have the right to monitor their child’s medical records, but the parents of an adult child do not, without permission. This is not a bad thing in most cases, but when that adult child has schizophrenia or another form of mental illness with symptoms like delusions or hallucinations, they often refuse to believe they are ill. Even worse, some believe their family members intend to harm them.
Many of the people I interviewed for this book are frustrated by this restriction. It was designed with positive purpose, but it makes life exceedingly difficult for some relatives of adults who refuse to seek treatment. On the whole, persons with mental health conditions of many types (depression, ADHD, PTSD, substance abuse disorders, etc.) are more likely to be victims of violence than perpetrators of it. However, for those with SMI (schizophrenia and other psychotic disorders), violence is not uncommon, and family members can be targets.
It’s impossible in most cases for family members to intervene and insist on psychiatric evaluation or involuntary hospitalization unless their relative is in imminent danger of harming themselves or another person. However, according to D. J. Jaffe, author of Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, the emphasis should be on preventing violence rather than reacting to it. The families I interviewed would agree.
In interview, parents, children, siblings, and partners of relatives with mental illness shared how difficult it was to watch their loved ones deteriorate before their eyes and not be allowed to seek help for them. Some of the stories were heartbreaking.
As one mom told me about being shut out of her son’s treatment decisions, “we’re the ones who have to pick up the pieces,” when he’s in the throes of a dangerous delusion or he gets arrested—which often coincide. Another mom begged law enforcement to request psychiatric evaluation for her son who was jailed, but they refused. He disappeared a year later and is presumed dead. My heart aches for these parents.
Many research studies and meta-analyses of data on the benefits of family involvement (FI) in caring for patients with mental illness support my thesis. But practitioners are evidently reluctant to utilize family members’ input. Unfortunately, failing to involve families can be dangerous. One sister of a man with schizophrenia says, “he lies with conviction,” so she isn’t sure what his psychiatrist or therapist hears. Without input from family members, his psychiatrist may be shooting in the dark, aiming for targets that don’t exist. Or failing to recognize fundamental issues.
As the daughter of a mother who was diagnosed with schizophrenia shortly after my birth, and who was institutionalized until her death 13 years later, I’m deeply interested in how other families have coped with mental illness. It’s a tough topic to discuss openly, and this book has allowed me to meet members of a dozen families I would never have met otherwise. I’m so grateful to them for sharing their stories with me. When families know they’re not alone, they feel supported in their struggles. The more we understand about the dynamics of mental illness, the better able we are to support the families dealing with it.
Janice Airhart 