These mothers keep their phones on silent because their nerves are fried. Every time they hear a ring, they know it could be awful news, and their minds and bodies tense up — over and over again for years.
Their adult children have serious mental health issues or ongoing substance abuse issues or both. One woman, whose son has severe mental illness and has been showing signs of emotional dysregulation since he was a small child, said that sometimes the phone would ring and “I didn’t know if it was a nurse calling to let me know she had to give him Tylenol or if they were calling to let me know that the sheriff’s office was there and they had to pull out the Tasers. I never knew.” Another woman, whose daughter struggles with mental health issues, said, “Anytime I hear that ring in a movie or anything, I have a dramatic reaction to it.”
I heard these stories when I sat in on several support groups run by Judith Smith, a psychotherapist and the author of “Difficult: Mothering Challenging Adult Children Through Conflict and Change.” I agreed to allow these women to remain anonymous so that they could speak candidly about their children’s struggles without further risking alienation or estrangement from them. (The groups I visited are for mothers, but many fathers manage the care of their mentally ill adult children as well.)
I interviewed Smith about “Difficult” in 2022, and since then, the problems experienced by families of difficult adult children really haven’t improved.
While there was variation in these families’ histories, the women I heard from hit similar bleak notes. A common story went something like this: An adult child had severe mental illness but wasn’t medication compliant because he or she hated the side effects or suffered from anosognosia, an inability to recognize one’s own illness.
Several women reported that even if their children consented to proper treatment and allowed their parents into the process, the treatment they sought could be nearly impossible to obtain. Sometimes insurance wouldn’t cover long-term care, or the availability of care was illusory: On paper, for example, there might be 10 psychiatrists in a given state who saw schizophrenic patients. But in reality, none of them were taking new patients, or they didn’t accept Medicaid, or they practiced hundreds of miles away. The women talked of countless hours spent looking into disparate health care options and coming up empty.
Some said that their adult children experienced periods of homelessness, leading them to worry that their children would end up in the penal system for nonviolent offenses or for simply acting out in public. (Some women, though, acknowledged feeling a small measure of relief in some situations when the police became involved, because that eventually led to their children getting needed medication.)
Worst-case scenarios constantly run through their minds, because there’s almost nowhere that their kids can truly be safe. In some instances, parents had to watch their children deteriorate horribly before they could get them help they needed, because in our legal system, the bar for involuntary psychiatric commitment is dangerousness to oneself or others, though the way that is interpreted varies by jurisdiction.
Jerri Clark — whose son Calvin was diagnosed with bipolar disorder and “crashed through every crack in the system,” she said, before dying by suicide at age 23 — became an advocate for parents like her. When adult children are seriously mentally ill and won’t seek treatment on their own, she said, their families are faced with wrenching choices. “Those families are generally told, ‘Stop enabling them. You have to let them fall to rock bottom or they’ll never get any help.’” Or parents are informed, “‘We will be able to intervene if they actually hurt you.’ So, effectively, families are told to put themselves in harm’s way. Those are basically the choices that the system gives us.” One study described this dilemma as choosing “the best of the hells.”
Dr. Paul Appelbaum, the director of the division of law, ethics and psychiatry at Columbia, told me that in these situations, family members are often “aware that if they turn the child out of the house, not only is that sort of turning the risk loose on society, but they’re also increasing the risk to their child.” He said mentally ill individuals are at greater risk of being victims of violent crimes than members of the general population are.
This week, my newsroom colleague Glenn Thrush reported on the tragic death of Markus Johnson, “who suffered from bipolar disorder and schizophrenia,” in an Illinois prison. Thrush wrote, “The country’s jails and prisons have become its largest provider of inpatient mental health treatment, with 10 times as many seriously mentally ill people now held behind bars as in hospitals.” Meanwhile, the number of state hospital beds for people with severe mental illness “reached a historic low of 36,150” in 2023, according to a January report from the Treatment Advocacy Center.
What can be done to help these families?
First, as The Times’s editorial board argued in 2022, we need to revisit the idea of building a community mental health system like the one envisioned by President John F. Kennedy in the 1960s. Between the ’60s and the 1990s, most of the state inpatient psychiatric hospitals closed. These hospitals were supposed to be replaced by “some 1,500 community mental health centers across the country, each of which would provide five essential services: community education, inpatient and outpatient facilities, emergency response and partial hospitalization programs,” the editorial board said. But Kennedy’s vision never materialized.
Many of the women said that supportive housing like what the community mental health centers could offer was at the top of their policy lists. It would require considerable resources, but as the editorial board wrote, the costs “would be partly offset by what police departments, jails and hospitals could save.”
Several of the women expressed worries about situations involving their children and police officers who aren’t sufficiently trained to deal with serious mental illness. “When they get a call for a mentally disturbed person, a SWAT team showed up at my house, and they don’t know how to talk to them,” said one parent. She wanted police officers to get more training and to be accompanied by counselors. Some cities, like Eugene, Ore., and Los Angeles are experimenting with sending unarmed civilian workers with mental health training to attend to people in crisis.
Dr. Appelbaum said it may be time to rethink the dangerousness standard for involuntary commitment. While he doesn’t want to see the bar return to being too low, as it often was 50 years ago, “One could imagine narrower criteria that allowed the involuntary hospitalization of someone who was clearly mentally ill” and “deteriorating and lacking the ability to recognize their situation,” he said. In essence, “a competence or capacity criterion that would be added to the presence of illness” to provide alternative grounds for hospitalization.
Something that all of the women agreed on was the need for more understanding and support from others in their lives. They said many friends and family members either backed away from them completely or gave them unhelpful or insulting advice. They felt that if their children had had physical rather than mental illnesses, that understanding would have been there. But, one woman said, “when it’s mental health or drugs, there’s always somebody who wants to tell you, ‘Just solve it.’ And there’s always an implication that you didn’t do that, you didn’t try hard enough.” She added, “We do that enough to ourselves.”
These women find great solace in one another. They take pleasure in one another’s company and in indulging in a little bit of dark humor to keep them going, even as they express frustration that their problems seem invisible to the rest of society.
At the end of one session, one woman ended with a plea for me to pass on: “The homeless that you run into in a place like New York City — it’s easy to judge them,” she said, but “those people, by and large, have mothers that care about them greatly and are worried about them and how to get them help.” When you see them, she said, think not only about how they’re suffering but also about the loving people who are suffering alongside them, worried about what they’re going to hear the next time they pick up the phone.
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