In the Shadow of Schizophrenia

About 25 years ago, out of the blue, a woman called me at work and asked if I was related to a woman with my mother’s name. The woman in question was, in fact, my mother. I had not talked to her in quite some time. She had been arrested for harassing a woman in the town she was living in. She was in the hospital, and they had been unable to find any family.

I am the daughter of a paranoid schizophrenic. My mother also has high anxiety and obsessive-compulsive disorder. We hear a lot about mental illness and how to help people with mental illness—and we should. We hear less about the toll this takes on their families.

Studies show that children of schizophrenics are more likely to suffer from schizophrenia, depression, and anxiety. Living with a parent with schizophrenia is classified as an adverse childhood experience, defined as a negative experience with lasting effects into adulthood. A mother’s paranoid or aggressive behavior can trigger a child to look for safety, only to find that the person who is supposed to comfort them is the very person causing their fears. Once that child has grown, they are likely to see the world as unsafe, have difficulty regulating emotions and with trusting others, and be at high risk for depression and anxiety.

Mental illness also takes a gigantic toll on our global society. According to the World Health Organization, over 720,000 people die by suicide each year, making it a leading cause of death among 15- to 29-year-olds. They may see their deaths as an end, but it causes lasting harm to their family and friends. Global disease burden estimates put mental illness as a leading cause of disability globally, on par with cardiovascular disease, the disease with the greatest global mortality rate.

Yet according to the National Institute of Mental Health, roughly 40 percent of people who need treatment in the U.S. do not receive it. Many sufferers resist seeking help because of societal stigma, fear of losing their jobs, and discrimination. There is also a large group of people with mental illness who refuse treatment because they do not believe they need it. This is where my mother lands.

My mother did not think there was anything different about how she perceived the world or the motives of people around her. When I was younger, she would blame people in her life for doing evil things with the intent of destroying relationships. She refused to speak to me for speaking to members of my family that she thought were doing her harm.

During these silences, she would call occasionally to ask if I was still speaking to “those people.” When I said yes, she would hang up. There were other times in our relationship when she would call me to yell at me. These yelling calls were often before work, so I would have to go through an episode with her before even starting my day. When she decided to stop speaking to me as well, I guess I should have been relieved, but I wasn’t. I never even perceived this as trauma or an adverse childhood experience.

We can help pay attention to the families of mentally ill persons; we can stop this cycle. Through treatment, I have finally begun to understand that much of my own anxiety comes from these experiences with my mother—that I'm both a health care researcher and a health care statistic. This is not a blame game. In fact, this understanding has helped me and lowered my anxiety.

I love my mother so much. But taking care of her, whether she is or is not speaking to me, has taken a toll on me; it’s hard to understand or explain. When I was in my 20s and 30s, I was bullied by her into changing or questioning my relationships with others close to me. I missed my uncle’s wedding. I lied to her about visiting my father. During this same period, she didn’t go to her own father’s funeral and made me feel guilty for attending. Whenever the phone rang, I feared it would be her, ready to yell at me. As a child, I was embarrassed by her behavior compared with other mothers. Now, I see people out to lunch with their mothers and wonder what that would be like.

When my mother was arrested and hospitalized, she was finally diagnosed with paranoid schizophrenia and given medicine to help. She was off her meds by the time she appeared in court, and she chose to represent herself. Fortunately, her case was assigned to a compassionate judge and district attorney. They agreed on a sentence of one year's probation if she agreed to take medication. My brother used this opportunity to get her into an assisted living facility. My family is lucky that my brother worked so hard to earn money to support her living there.

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My mother is now 92 and remains in assisted living and on medication, which has made her more stable. Her OCD, anxiety, and depression remain, I think. As she has aged, her cognitive function has declined as well, due to her schizophrenia, the medications, or both. I miss the part of her that was creative and fun. The drugs took that from us. However, the other side of that coin was unsustainable.

So much of this could have been helped if my mother had accepted treatment. Although her disease presented itself to those who knew her, she could not see it. She still does not. She doesn’t really understand the medicine she takes and what it does; if she did, she would stop taking it.

A few months ago, I saw last year’s Best Picture Oscar winner, which features a teen daughter of a single, drug-addled father. The main action of the film spans only a few days, but as I watched it, I reflected on my entire life, and I never had a moment of relief from worrying about my mother. It continues to be one battle after another.