From the time I was 7, my mother instructed my older sister and me that if anyone asked how Joel was doing, we should tell them he was “fine.” Joel, my older brother, stayed in his room when people visited and didn’t go with us to see family. I didn’t feel comfortable having friends over because of how he slumped on the sofa in his sleeveless undershirt, staring into space, laughing to himself.
Lying in bed at night, I listened to my brother’s mysterious soundscape in the bathroom. His mumbled speech and snickering filtered through the thin wall between us. He spoke to an imaginary audience in a language I couldn’t understand and hissed like he was talking with snakes. Covering my ears with pillows and sinking deep under the covers proved useless.
I feared that whatever was wrong with Joel might be waiting inside me, that it “ran in our family.” I never asked my parents why Joel hardly smiled and why he bragged about his plan to swim the English Channel in record time. I knew these topics were not to be discussed. My father wanted his only son to become a doctor, a highly esteemed profession for Jewish Americans. His disappointment and anger at Joel’s poor grades resulted in frequent scoldings, including “You idiot, why can’t you just be normal?”
During the 1950s and ’60s, schizophrenia was regularly blamed on the mother’s parenting style — her rejection of her child during infancy and the years afterward. Because of my parents’ continual denial, Joel wasn’t diagnosed until his mid-20s. As a result of the lack of diagnosis, none of us knew how to provide him with what he needed: therapy, medication and social support.
Today, schizophrenia is known to be a genetically based neurodevelopmental disorder that begins in utero. Recent research suggests that approximately 3.7 million adults in the U.S. have a lifetime history of the condition or other schizophrenia spectrum disorders. While the typical onset for schizophrenia is in late adolescence or early adulthood, cognitive dysfunction can be present much earlier. This was true for my brother. He began retreating into his own world at age 13.
The challenge is that family members, overwhelmed and confused by the change in their loved one, often don’t seek help, especially if there is no obvious risk of the person engaging in self-harm or hurting others. This neglect of available resources can have negative consequences for the person who is suffering.
It wasn’t until my sister was in college that any of us learned what was wrong with Joel. One day, her psychology professor lectured about schizophrenia, describing symptoms of talking and laughing with people who weren’t there, delusions and disorganized thinking. She urged our parents to take Joel to a psychiatrist who could provide diagnosis and treatment. They refused, still hoping he — then 24 years old — would “grow out of the phase” he was in.
When they finally agreed to take him in and he obtained a diagnosis, I was away at college, protesting the Vietnam War, smoking marijuana and erasing my brother from the family tree. When asked if I had siblings, I’d say, “One sister.”
My parents never met my college boyfriend, Mark, because that would have entailed bringing him to their house where Joel also lived, and I hadn’t told Mark about him. After college, Mark and I traveled together for 16 months through Africa and Asia. When we returned to the U.S., we stayed with Mark’s family. My parents came for dinner and, to my chagrin, they brought Joel with them. At 30, he looked like an old, troubled man. His oversize T-shirt hung on the stooped shoulders of his lean, 6-foot body. His wrinkled khaki trousers were haphazardly rolled up to midcalf, accenting his well-worn flip-flops.
Mark’s mom turned to me, her eyebrows raised, confused.
Then Mark also shot me a perplexed look.
My face matched the red of my hair. “He’s my brother,” I mumbled, wishing I could dissolve into the white carpet.
To escape the mortifying moment, I rushed to hug my parents, then moved to Joel.
“Hi, Mimi,” he began, bending to give me a quick hug and an awkward peck on the cheek. “Welcome home.” I already knew what came next would be a barrage of questions from his limited repertoire of topics: food, restaurants and toilets.
He flicked at his crew cut with his thumb and second finger as if to remove a pesky insect. “How was the food?” he asked, referring to our trip. “Did you eat American food? What were the bathrooms like?”
He blurted his questions in rapid fire, not waiting for a response, as if to get them out before he forgot them.
Joel continued to live with our parents for most of his life, moving with them from New York City to Fort Lauderdale, Florida, in the 1980s. A few years after our father died, Joel, then in his 50s, moved into his own apartment close to our mother. He visited her daily and ate at her house. He never had a friend or a romantic relationship. Our mother never spoke of Joel’s mental illness.
Over the ensuing years, I made annual visits to see my mother and brother. By this time, Joel was medicated but frequently noncompliant.
As my own sons entered their mid and late teens, any aberrant behavior caused me to worry that they were becoming like Joel. Neither of them did.
When our mother passed in 2001, my sister and I were suddenly thrust into the role of caregivers for the brother we hardly knew. We had no idea what was expected of us. If our mother had a plan for Joel after her death, she never shared it.
For the next decade, I visited Joel frequently, traveling from Tucson, Arizona, to Fort Lauderdale. His daily routines became clear: He’d make lengthy to-do lists, including brushing his teeth and bringing in the newspaper. He’d line up six red plastic cups in a perfect row on his folding table as a reminder to drink water. He’d take the bus to the Golden Corral restaurant each day at the same time and consume the exact same meal from the buffet. When the packaging on Bic pens changed, Joel and I spent hours searching stores for the ones he always bought. When his reading glasses broke, he refused to buy a new pair, instead taping them across the front to hold them together.
Over time, I understood that Joel’s idiosyncrasies ― brought on by his illness — contributed to his unique spirit. His quirky life rituals provided structure and comfort. Any change brought stress and confusion.
Photo Courtesy Of Mimi Nichter
But the most difficult part of my caregiving role was not helping with his daily life, but learning to communicate with him appropriately. I didn’t want to talk to Joel in the condescending way my parents had, but I had no role model for acting differently. When Joel told me he had stopped taking his medications, I remembered how my mother responded, “You have to take your meds or I’ll put you in an institution.” I had no interest in threatening him. Instead, I found a way to talk with him with respect about the importance of continuing to take his medications. I muddled my way through, trying to avoid control battles.
Although it was challenging to develop a close relationship with a sibling who showed no affect, I gained respect for Joel as a relatively high functioning person with schizophrenia. I toyed with the idea that he could live near me, but realized it would be far too disruptive for him.
During one of Joel’s rare visits to Tucson, my close girlfriend came with us to explore shops for coin collecting, his lifelong hobby, and to dinner at the Golden Corral. His odd conversations did not faze her; she appreciated him for who he was, a person with a disability. The legacy of shame I carried for so long began to shift to acceptance of my brother.
Leaving his apartment on what would be our last visit, Joel looked at me, his mouth upturned in a half-smile. “Thank you for coming to see me, Mimi. I had a very good time. I’ll come to see you in Tucson soon.” I guess something had changed in him, too.
Joel passed away in his sleep at age 67, a long life for a man with schizophrenia. His neighbor saw his newspapers outside and knew something was wrong.
When my mother died, I had no idea how to be a caregiver for my brother. About one-fifth of American adults, or around 53 million people, are thought to serve as unpaid caregivers for a family member, such as a parent or grandparent, a spouse or partner, or a sibling with chronic mental or physical health problems. And like me, they’re often overwhelmed by the demanding responsibility, unaware of the complexity of care and unable to navigate a health system that might offer assistance. But it doesn’t have to be this way.
I wish my family could have had open and loving discussions about the future care of my brother. If shame hadn’t surrounded Joel’s disability, I would have asked questions, educated myself about his condition and learned about the emotional ups and downs of being a caregiver.
Caregiving for my brother challenged my abilities and was often frustrating. But it also helped me become more compassionate, especially for those living with chronic mental illness. I know if Joel were alive today, he wouldn’t be a family secret. I would make sure he knew he was loved and valued for who he was by our whole family.
Mimi Nichter is a professor emerita in the School of Anthropology at the University of Arizona. She is the author of various books and has published widely in academic journals and in outlets like Newsweek. Her most recent book, “Hostage: A Memoir of Terrorism, Trauma, and Resilience,” is currently with an agent.
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