For years, Mitul Desai felt that the best way to deal with his little brother's schizophrenia was to avoid talking about it.
His brother had become angry and withdrawn during his first year in college in 1996, and then started hearing and seeing things that weren't there. Over four years doctors told the family he had everything from alcoholism to bipolar disorder, until finally he got the correct diagnosis. It was chaotic and frightening. There were also emergencies — major arguments, trips to the hospital, that time they had to convince the neighbors not to call the police.
Desai compartmentalized. During these years, he focused on the brilliant career he was building as an intellectual property attorney, Wall Street analyst and senior adviser at the State Department. From the office he helped his family by navigating the health care system, talking to the experts and keeping on top of the endless forms and phone calls required to keep his brother stable. His parents, especially his father, handled the day-to-day, he says.
Nobody around him understood what it was like to have a close family member with a severe mental illness, so he kept quiet.
"I felt we were the only family in the world going through this," he says. He and his parents couldn't even talk about their emotions with one other. It was like they were all trapped in their own silos, unable to connect.
Slowly the pain of the situation seeped into everything else. Desai was angry, anxious and depressed.
Meanwhile, he saved every article he saw about schizophrenia, every research paper or resource, every idea he had about how to fix the problem. He told himself that some day he was going to do something to help — not just his brother, but anyone in this situation.
Some day.
Every Sunday night, that thought returned. He enjoyed the work, but five years into a high-level corporate job it struck him: Is this really my purpose in life? He quit that week, and started volunteering at the Fountain House, a nonprofit that focuses on peer support and community for people with mental illness.
He learned that for serious mental illness, family caregiving and community support are just as important to recovery as the right prescription. Mental health caregivers are the first and last line of defense. Yet they don't get the support and resources they need.
It was a turning point. He started planning and working toward a vision to create a new kind of business that would recognize the crucial role of mental health caregivers, and provide them with more help.
Of the roughly 63 million caregivers in the United States, 23% help someone with a mental health problem such as depression, bipolar disorder or schizophrenia. Another 4% care for people with addictions.
Caring for someone with one of these invisible illnesses can be particularly stressful. Crises erupt with little warning. Mental health care can be hard to find and confusing to navigate. Friends and relatives are often judgmental or fearful. It's like a secret society that nobody talks about and nobody wants to join.
Learning to see an invisible illness
Helping someone with a serious mental illness is different from caregiving in the context of common medical problems like heart disease or cancer. Disorders that primarily affect cognition, behavior and emotions are hard to recognize and hard for other people to understand or accept.
For many caregivers, the first challenge is often just figuring out what's going on. Symptoms like paranoia, apathy or delusions can be easily confused with stubbornness, bad temper or substance abuse, and someone dealing with these problems may find it impossible to describe.
Once they wrap their heads around the situation, caregivers then find themselves becoming the translator.
"Caregivers are often faced with the burden of having to educate themselves and other people about the condition their loved ones have," says Dr. Christine Crawford, the associate medical director for the National Alliance on Mental Illness.
Most people understand and sympathize with someone who has cancer or a stroke. Not so with mental illness. Friends and family suspect drugs, laziness or bad moral character. Pray it away, they might say — or they blame the family for being too lax, too strict, too something.
"Once you have a relative diagnosed with cancer, you get greeting cards and balloons, as you should," says Desai. "When you have a relative diagnosed with serious mental illness you are greeted with silence. It takes its toll."
Families may find that the stigma of mental illness extends to them, too. After Greg Green's baby girl was diagnosed with cerebral palsy, the family found social support at school and among disability-rights advocates. Now an adult, she's a Special Olympics ambassador, and her dad is on two commissions that oversee policy for people living with disabilities in their state. They found strength in community.
It was a different story when Green's son developed mental health problems as a teenager. The family had to explain over and over again what was going on with him — why he wouldn't make eye contact, or why his body language was awkward and off-putting. And still people didn't get it. Their house had been known for community events and family get-togethers. That all stopped.
It was far more difficult to find social support than it had been with his daughter, says Green, and he blames stigma: "I think the number one issue is fear, not wanting to be involved."
When friends and family withdraw, it's hard on both the caregiver and the person with mental illness. From the start, Desai was determined to find his brother the best medical treatment available by seeking out the top experts and enrolling him in clinical trials. It was only later that he learned that community and peer support are also essential components of recovery. His family's isolation wasn't just painful — it was actually doing harm.
That experience focused his plans. The company he was creating would train and educate caregiver families, but also combat the stigma and isolation by including peer support — helping build the community that can be so hard to find.
Caregiving like no other
One reason that mental health caregivers particularly need support is that caring for someone with a serious mental illness can be nerve-racking, simply because of the nature of these disorders and diseases.
Caregivers often feel they can never let down their guard. People with schizophrenia or schizoaffective disorder may be quiet and withdrawn for a long time, then unexpectedly slip into a psychotic episode. A bout of major depression can strike for no apparent reason. The caregiver constantly tracks the ebb and flow of symptoms, watching for an alarming shift in mood or cognition.
And sometimes a loved one may disengage from treatment or refuse help altogether, and it's the caregiver's job to try to talk them into it. If an adult is considered to be no danger to themselves or another, they cannot be forced into treatment no matter how precarious their situation becomes.
Green's son lived at home safely into his late 20s until his usual medicine went through a shortage in February 2024. (NPR is not using his name in order to protect his privacy in discussing mental health issues.) He was switched to a new drug, which didn't work. The trust between father and son broke down, and the young man eventually decided that the treatment was poison. At the end of May, a conversation about work touched off a massive argument and he stormed out of the house.
Since then he has been homeless, at first in his car, then bouncing between hospitals, treatment centers, and the street. Green says that for months, his son refused to accept anything from him, or even speak with him.
This is not uncommon with mental or cognitive illness. Misunderstandings can boil up into arguments, and caregivers have to think about safety, says Crawford: keeping guns and knives out of the house, locking up medications or even taking the door off the hinges in the person's bedroom to monitor their activity.
These tasks are mentally and emotionally draining, points out Marvell Adams, Jr., the CEO of Caregiver Action Network. The job of connecting with someone who is withdrawn or delusional is always a work in progress.
Caregivers live with the suffering they witness, as well as the frustration of not being able to truly understand the reality of the person they love. Just like with dementia, caregivers may feel they no longer even know the person they care for. It takes a toll, says Adams. It's common for someone supporting a person with major depression, for instance, to develop depression themselves.
For Green, his son's departure didn't mean his caregiving role was over. It just became more harrowing. Earlier this month, his son was arrested for trespassing at a construction site; Green thinks he was probably looking for a place to sleep. Now, Green is juggling court proceedings and appointments with the motor vehicles office, trying to replace all the documents that were lost during the arrest.
His son checks in now and then, but is still living outside.
"I'm constantly thinking about him," Green says. Every time he opens his internet browser, he checks his son's medical records, logs in to his bank account to see where he's been, and worries.
"Every night I go to bed thinking: Where is he tonight? It's raining, it's cold. Does he have a place?"
He figured out a way to help by passing items like a phone charger or benefits card along to outreach workers, who will give it to him without mentioning where it came from. At night, he racks his brains for more ways to help his son.
Building new supports for family
A family member's dedication can make all the difference in the lives of people they care for. After years of helping with his brother's mental illness, Mitul Desai learned that the evidence actually proves it: The best treatment for mental illness combines good medical care, peer connections and family support. None of that can happen without engaged, committed caregivers.
Recognizing their role is not just better for the person in question; it also benefits the health care system and the hospitals, courts and jails where people often wind up and which aren't equipped to help.
In 2023, Desai launched The CareHack along with psychiatrist Eli Shalenberg. It offers education, coaching and real-time advice for family caregivers dealing with severe mental illness, dementia and other diseases that affect the mind.
The company doesn't offer its services directly to families. Instead, it will work within the system, where Desai thinks they can do the most good. The bet is that the big players in the for-profit health care system will recognize the value that caregivers bring to mental health treatment. The pitch to them: happier, more resilient caregivers reduce expensive hospitalizations and help patients stay healthy and stable.
The CareHack's customers could include insurance companies that recognize the cost savings that come from supporting and training family caregivers, or large practices focused on mental health and substance abuse so they can offer more granular support to the families who care for these patients every day.
Basically, Desai created the support he wished he'd had decades ago. Caregivers can watch short videos or listen to lessons online, or get customized coaching from experienced social workers. They also get hooked up with other families in similar situations, to problem-solve and share stories together, overseen by a moderator. These services are free to them.
Desai's business is now working with one multi-state practice, and launching a Medicaid-funded project in New York State. They plan to run a clinical trial, a formal test, of the CareHack model to demonstrate its value for their potential partners.
Meanwhile, caregivers can find information and advice from nonprofits with specialized mental health programs. NAMI offers a free eight-week peer-led training course as well as family therapy clinics targeting the first episode of psychosis. Caregiver Action Network recently created a website dedicated to caring for cognitive and behavioral problems, and launched an online peer-to-peer network to connect caregivers with advocates who offer advice and guidance.
Being prepared for a crisis can potentially make a big difference. Carers and their loved ones can collaborate during stable times to create a mental health advance directive that spells out who should make decisions during a critical situation, and what should be done to calm things down.
And when a crisis comes, there are often better alternatives than calling 911. The nationwide 988 lifeline, rolled out in 2022, is intended for mental health emergencies. Counselors rather than police dispatchers answer the 988 call, and if necessary dispatch a crisis response team with training in mental health. Green also recommends calling the non-emergency line for the local police or the nearest psychiatric hospital's crisis team.
Both Desai and his brother are doing better these days. His brother is at an assisted living facility near their parents. Desai has spent time processing his experiences, recognizing the way he is affected by feelings like survivor's guilt — his grief at knowing his brother will never get to enjoy some of the simple pleasures in life, like hanging out with friends on a Friday night.
Dealing openly with his brother's illness has taught Desai grit, resilience and what he calls extreme empathy: "The minute I meet somebody who has this experience, I'm just bonded."
He will not be able to cure his brother, or lift the stress from his parents. But what once felt like a failure, a source of shame and stigma, now has a purpose: a promise that other families will not have to endure this alone.
Kat McGowan is a caregiving reporter based in Berkeley, Calif.
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