My Mom Had Schizoaffective Disorder, but the Mental Health System Couldn't Save Her From Suicide
The backstory of my mom’s mental health journey during her 61 years on Earth is complicated, so I’m going to start with the very scary night when everything came crashing down.
It was a late summer night in 2007. I had returned to my childhood home in New York City after graduating from college in Baltimore. I was 18 when my parents divorced. Since that time, my mother had been living in Florida, near her parents and her sister, so I hadn’t seen the full progression of her disease, though I knew things were not right.
She talked about God and others speaking to her and spewed conspiracy-related stories about our family. Her paranoia and delusions convinced my two brothers and I that something was seriously off, so we staged an intervention. She was supposed to come to the house that night to meet with my younger brother, who was the only one she would see because she thought everyone else in our family was out to get her in some way.
Once she arrived, our plan was to talk to her about agreeing to get some help. Because she was an adult, we could not force her to receive medical attention unless she was a danger to herself or others. At this point, she didn’t appear to be a danger, so we had to have her cooperation.
Once she realized my older brother and I were there too, she took off running, and the three of us chased her down the street. She darted into a subway station a few blocks away and jumped on the 6 train, but we were luckily able to board the same train. She switched to the 7 train a few stops later and we ended up in Queens. Once we finally caught up to her, one of my brothers had to physically restrain her on the sidewalk while my other brother called the police on his cell.
We had never done anything like this, so we didn’t know who else to call. We were also a bit worried they might take her to jail, where we knew she didn’t belong. Fortunately, an ambulance arrived along with the police. The police assured us she wouldn’t be locked up behind bars, but we weren’t told exactly where she would be going.
After the police car and ambulance pulled away, we were standing on the sidewalk. It was quiet and dark; we’d never been to this part of Queens before. We’d just chased our mother through the subway and watched police take her away to who knows where. It felt like we were in a movie.
A diagnosis and drugs, but no healing
Fast forward to the scene where my mom’s fraught journey with the mental health care system began. They diagnosed her with schizoaffective disorder, which the National Alliance on Mental Illness (NAMI) describes as a chronic mental health condition with symptoms of schizophrenia, such as hallucinations or delusions, plus symptoms of a mood disorder, such as mania or major depression.
The definition outlined the symptoms she was experiencing, but it offered little insight into the root causes of schizoaffective disorder, which didn’t sit well with me. I wanted to understand if and how we could heal and reverse this condition, rather than mask the symptoms with medication. So I began probing PubMed and other online medical databases for answers.
I learned that certain environmental factors, such as childhood trauma (she had several) and stress (her divorce), can boost a person’s risk of developing mood disorders. But I was also struck by the many gut-related risk factors that may play a role in someone developing schizophrenia, including inflammation, food intolerances, and toxoplasmosis, a parasitic infection that can be acquired by ingesting undercooked meat or shellfish or coming in contact with contaminated cat feces. (Yes, we had cats.) My mom did in fact suffer from many gut-related infections and symptoms, so once I found this research, light bulbs went off in my brain.
Unfortunately, I read much of this research too late. Each time I would ask one of the psychiatrists at the different facilities where she received treatment what we could be doing to heal her brain, they just stared blankly at me as if it had never occurred to them that we may actually want to do more than just stifle her symptoms.
The first facility the police put her in that night was so much like a jail that I can remember crying and yelling at my dad to please pay for her to be in the VIP wing so she might actually sleep and be safe. The regular wing was too frightening and the opposite of a healing environment. We were lucky enough that my dad could afford to do so.
Over the next three-and-a-half years, my mom was moved four or five times, from one mental hospital to another, across four states, where different psychiatrists prescribed various antipsychotic drugs and mood stabilizers. The care was disjointed, confusing, and no one seemed to care if she ever really got better. Though my intuition told me I needed to take control of the situation, I hesitated and trusted that they were the experts and knew what they were doing. She felt so awful on the drugs that she tried to go off of them a few times. Each time this resulted in a manic relapse, and she would end up back in a mental hospital.
Her downward spiral
I watched my otherwise sharp, 57-year-old mom turn into a vegetable because of the powerful drugs and their side effects: drooling, shaking, sleeplessness, slurred speech.
Toward the end of her life, I began asking her doctor about alternative treatments such as homeopathics, which a very small study showed could be effective at putting schizoaffective disorder into remission. I also asked if we could experiment with things like omega-3 fatty acids (fish oil), which a study showed may prevent the progression of psychosis, or a liver detoxification program to possibly prevent a drug-induced liver injury, which I was worried might happen due to the powerful drugs she was taking. My family was willing to try anything experimental, but we were given no options; my suggestions were met with an eye roll from her doctors.
While the drugs helped her to relieve her mania, her quality of life was not better. She was now disabled and depressed and living in Boston close to my uncle, her brother, who was now her legal guardian. She began to lose hope. Finally, I believe she concluded enough is enough.
A call to action
She took her life in 2010, a few days before she was supposed to come down from Boston to have Christmas with us in New York. I can still remember trying her cell phone —it was off—and then calling my uncle, who told me the news.
The moment is as vivid today as it was nearly nine years ago. At the time I was in the process of applying to business schools, and my applications were due two weeks later. I didn’t think I could finish them, but my friends were incredible and helped me put the pieces together and get a few submitted in time. I declared that if I got in anywhere, I would go and use the experience as a way to change career paths, and work on fixing the health care system and helping others avoid what I and my mom had been through.
Her life, illness, and death inspired my current work: helping people define health care as the choices they make for themselves each day—what to eat, which products to use, what kinds of doctors to partner with, and so on. It’s my belief that when people take control of their health, they can help prevent the majority of chronic health issues and start healing them when issues arise.
Though she wouldn’t be with us that Christmas, she still prepared gifts and notes for us. I read her short note to me hundreds of times. It assured me that the pain of a recent breakup I’d gone through would eventually go away. She was right, but the heartache of losing my mom this way lingers on.
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