A Family Perspective on Schizophrenia Support and Treatment

Over the last four decades, my family has supported my older brother, who lives with schizophrenia. I, along with my parents and sister, have lived through the challenges that families face in caring for loved ones with mental illness and navigating the complexities of our health care system. It hasn’t always been easy to talk about, but I think our family story will resonate with many others who have silently lived this experience.

My brother’s mental illness became apparent in his early 20s. He has always been highly intelligent, with an excellent memory to this day, loving music, parties, and fashion. But he began to struggle mightily when he was in college, ultimately unable to graduate or secure a job. This can be true in many cases; mental health issues become evident during college when many individuals are living on their own for the first time away from their familiar surroundings. This is one more reason why it’s so important that university leaders be educated about this challenge and equipped to provide greater support.

My brother’s challenges frustrated my father a great deal; he assumed my brother was simply being lazy and not fully applying himself. Doctors initially thought he may have been manic-depressive and gave him medications that were likely counterproductive. But in his mid-20s, he was finally properly diagnosed with schizophrenia.

To be candid, I think a complicating factor was that we were Asian-Americans. There’s often a bigger stigma in our community around talking about issues like mental health; we rarely discuss it openly, even with close relatives. I’m glad there’s much greater awareness today about the need to openly address issues of mental health, but we still have a long way to go.

When my parents passed away, my sister Corinne assumed primary responsibility as his caregiver, and I was a close partner, helping where I could. I vividly remember beginning my tenure working in the pharmaceutical industry and learning much more about schizophrenia and available therapies — even as I lived the experience outside of work of trying to help him and navigating a fragmented system to get assistance, I found that there was no clear resource to turn to for assistance; our family ended up paying out of pocket for the many things my brother needed, not realizing there were many state and government services and subsidies for people living with serious mental illnesses. In fact, I only recently came across managed long-term services and supports (MLTSS), a Medicaid program that streamlines the delivery of home health care, long-term care, and services. In addition, it was only a few years ago that my brother was able to also leverage community behavioral care centers, enabling him to have constant socialization, group therapy, and other support services.

Overall, the situation is getting better today with care services and online communities coming together to share both resources and a sympathetic ear, but there’s still a lack of available information, especially for families who aren’t as tech-savvy as more services are increasingly digitized.

My brother’s story underscores the importance of properly diagnosing mental health issues as early as possible and getting the most appropriate treatment. When my brother was given access to proper medication — long-acting injectables, in his case — we saw a vast improvement as he became more social, talkative, practiced better hygiene, and highly functioning. He now lives on his own with daily supervision from my sister as well as the local community health care through Medicaid and MLTSS.

I’ll always be grateful to my sister, Corinne, and my brother-in-law, Wally, for everything they have done and continue to do for my brother. It has been several years now, and up to this day, it’s fallen on her to act as his primary caregiver — down to the daily tasks of reminding him to bathe, cut his nails, maintain his living space, and take his medications. I can’t stress enough how much of an impact it had on him to have this daily presence in his life — something my sister continues to do. Even with access to benefits like food stamps, for example, there is still a need for someone to actually drive him to the grocery store or do the shopping for him. There will always be a need for caregivers, and we should celebrate them. I also hope that caregivers can prioritize self-care for themselves, too. I’m reminded of what the late First Lady Rosalynn Carter said: “There are only four kinds of people in the world — those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

My advice to families navigating this challenge is to talk to as many people as you can. Connect with others who have been in your shoes and learn what works for them. Fight back against the stigma of mental illness. It’s sad for me to remember times when relatives would come to our home in the early days of my brother’s diagnosis, and my family — perhaps out of a misguided idea of how to protect him — would keep him hidden in another room. It’s critical that we not shut out those living with schizophrenia. Today, we are very open about all this, and we won’t allow the societal stigma to have a stronghold over us.

By openly sharing our experiences and opening our hearts, we hope to make the journey for people like my brother — and their families — a little bit easier to navigate in the future and not be ashamed to openly share their experiences.