Three years ago, Angela Kimball, the national director of advocacy and public policy at the National Alliance on Mental Illness (NAMI), witnessed her thirty-year-old son experience a psychotic break. He’d struggled with bipolar disorder since childhood, but this was new. When Alex began living on his own, says Kimball, he eventually tapered off of his medication. “He felt a loss of control and didn’t want to be dependent on something that changed his brain chemistry.” There was a common blunting effect among all of the medications he was on, which Alex felt constricted by—not only personally but also professionally as an artist. When experiencing an upward curve in mood, early in a manic phase, he felt “pretty darn fantastic.” “He would have so much energy and creativity. His artwork was phenomenal.” Then there would be a shift, and Kimball could see the signs that her son was headed toward a crisis. It was in Alex’s voice as his mood transformed from high-energy to angry and tense. Soon, he’d be unable to sleep. That’s when, says Kimball, she knew the crash was coming, followed by periods of depression.
What was different in 2017 is that these changes in mood also came with new symptoms: paranoia and delusion. “I’d never seen anything like it.” The crisis wasn’t out of the blue. Kimball knew Alex wasn’t doing well, but, as a parent of an adult, she says it’s hard to separate “your reaction to what someone says or does from what you know intellectually might be going on.” Even though they lived in different parts of the United States—Kimball resided in Alexandria, Virginia, and Alex was in Portland, Oregon, where he’d grown up—mother and son remained in regular contact. In December 2017, Alex’s text messages became hostile, accusing Kimball of meddling in his relationship with his girlfriend. What made the exchange particularly tricky to navigate, she says, is that there would be a grain of truth in his texts but thrown off-kilter, not representing reality as she saw it. “As a parent, it’s hard to decipher. I thought, ‘Oh, my gosh, have I been interfering too much in his life?’ Clearly, that’s what he’s feeling. Do I back off?” Kimball told Alex that she loved him, was there to support him, and was not trying to meddle.
The next day, on Kimball’s drive to work, a barrage of texts from Alex appeared, and his language was increasingly paranoid. Two days later, his father called and told Kimball he was scared and asked her to come to Portland. She quickly understood his fear as soon as she arrived. “Alex believed we were conspiring with the FBI to surveil him. When someone is at a heightened level of paranoia, you realize that they are acting out fear, and their normal relationship to you is not on the table any longer.” Kimball says the paranoia made Alex perceive his parents as potential threats.
These shifts in acuity, says Kimball, are not easy to articulate to crisis intervention teams or law enforcement. The situation was life-threatening. “I felt it in my bones. How do I convey that to law enforcement?” She’d made an arrangement with a friend. If Kimball texted her friend a single character, the friend was to call a crisis intervention team. Once she arrived at her home in Portland, where her son was living, she waited. Kimball knew Alex would eventually return to sleep, and he did. They had a friendly conversation and watched TV together. It seemed fine, but it wasn’t. Alex would be loving one moment and accuse her of planting surveillance equipment to get him arrested the next. Out of the corner of her eye, she noticed the stove was shattered. A sledgehammer lay next to it. “He calmly told me there was tracking equipment in the oven, and that he’d stopped using soap because it infiltrated the house. He said, ‘You have to be careful of that.’” Then he turned to his mother and said, “God, I love Jerry Seinfeld. I’m so glad you’re sitting here watching Comedians in Cars Getting Coffee with me.”
Sometimes, says Kimball, the crisis experience is so paradoxical and rapid-fire that a loved one just doesn’t have the standard mechanisms to identify danger. “Normally, something is or isn’t a threat. In this situation, it’s just not knowable. It’s like Russian roulette: you don’t know which is the live bullet and which will be a blank.” When Alex went to the bathroom, leaving the door open to keep an eye on his mother, Kimball texted her friend, who immediately contacted mobile crisis. It took half an hour for the team to arrive, which, says Kimball, “felt like an eternity.” They knocked on the door, and Alex asked if it was the police. He said, “We are not answering the door.” Mother and son stayed put until Alex shifted to a gentler mode. When he did, Kimball quickly opened the door and let the team in, which was made up of behavioral health clinicians and uniformed CIT-trained officers. “They spoke with us separately, which was essential, and the officers quickly developed a rapport with Alex by talking to him about art and cars.” To this day, Kimball feels grateful to the team that she says likely saved both of their lives. Without labeling Alex’s reality, the behavioral health specialist addressed the symptoms that were bothering him:
Specialist: “It sounds like you haven’t been sleeping for a while. Is that right?”
Alex: “Yes, it’s been days.”
Specialist: “I hear you say that your head hurts.”
Alex: “Yeah, my head hurts. It’s been hurting.”
Specialist: “I know there’s a doctor who can help you get a good night’s sleep if you thought about going to the hospital with us. We could make sure that happens. Would it feel good to get a good night’s sleep?”
Kimball says she was surprised and relieved by her son’s willingness to go to the hospital, but the journey was just beginning. Her personal and professional experience has taught her that, from interview to discharge, family members and loved ones are often left out of the dialogue and not believed. Although Alex went into inpatient psychiatric hospitalization voluntarily, the hospital converted the admission to a director’s 72-hour hold and then held him for 19 more days. “He received inept care during that time. While the hospital was new and clean, there was subpar treatment: his medications weren’t managed properly, there wasn’t family inclusion, despite my numerous attempts, and there was no discharge plan to speak of.” At discharge, Alex was still actively psychotic. The hospital’s plan was for him to make an appointment with an outpatient clinic where they would do an intake assessment. “It didn’t make any sense. Alex still believed people were surveilling him. He was not stabilized. So, I asked them if they had intensive outpatient services and they said, ‘We don’t think so.’” After some pushing, the clinician said they could make a referral to a program.
The next day, Kimball drove her son to the intensive outpatient program, where he met with the intake clinician. Less than 24-hours later, she learned Alex was denied by Medicaid, which was a surprise considering he was discharged from the hospital with a strong recommendation that this was the level of care he needed. “It turns out that my son was charming and articulate with the therapist who thought he wasn’t nearly as bad off as the hospital was making him out to be.” Kimball notes that had the therapist included her in the interview, the outcome might have been different. Desperate, she called the state Medicaid agency and spoke with a customer service representative who promptly told Kimball, “I can’t talk to you. You’re not our covered client.” She handed Alex the phone, who said, “I give my mom permission to speak with you.” The representative replied, “I can’t accept that. I can only speak with you.” Alex was frustrated and told the person, “I don’t know this stuff. I’m putting it on speakerphone.” The representative immediately hung up.
The conversation with the Medicaid customer service representative took place on a Friday afternoon. By Monday, Alex had stopped taking his medication, began reusing substances, and his psychosis was worsening. Kimball said there was a window of opportunity to mitigate his crisis where Alex wanted to engage, and the moment was lost. “If there had been no roadblocks, he could have been on the path to recovery.” Instead, the delay set him back. Hoping to get him immediate treatment, Kimball reached out again to a crisis intervention team, but, upon arrival, the clinician told her that Alex was too agitated, and “there’s nothing more we can do here.” The officer present felt bad and reached out to an urgent psychiatric walk-in clinic, ensuring that a psychiatrist would be physically on the grounds when Kimball and her son arrived.
From then on, it was as if Kimball and her son were on a loop, with mental health professionals often not perceiving Alex as paranoid or delusional. There were more mobile crisis team and hospital visits without stabilization or comprehensive discharge plans. Some crisis intervention teams would work with Alex while others refused to go into the home because of his agitation level. “One team worried that if they tried to engage him, it would end poorly, and they’d end up hurting him. They followed up the next day, though, and found him walking to the store. He seemed cool and calm.” The team told Kimball, “We can’t do anything; he sounds absolutely fine.” Alex could vacillate between pleasant conversation to driving his car into his art studio and threatening to asphyxiate himself, or talking with a food vendor in the neighborhood but then quickly tell his mother they had to cross the street because the FBI was tailing them. In May, Alex died in a car accident while experiencing a manic episode. “He died too young. It breaks my heart; he had so much life to him.”
Kimball says that so much went wrong for Alex in the Oregon mental health system but highlights that the state is not unique in these challenges. She points to siloing, inequality, not including family members, and overly concrete views on capacity as part of the problem. The goal in mental health, says Kimball, is for people living with mental illness to remain in the community and enjoy the right to self-determination. “Regardless of disability, individuals should have a gradient of choice and autonomy, depending on their needs.” While most mental health experts would agree that there should be a spectrum of shared decision-making, and that capacity impacts the level of support a person may need, says Kimball, she’s found this not to be true in practice. Instead, she notes, capacity is treated as either the person has it or doesn’t. “In these short snippets of contact with my son, mental health professionals defaulted to thinking he was okay when he was far from it.”
When people are in crisis, their family members are too. “We’re running on adrenaline and frequently operate out of fear.” Kimball says part of the crisis care dialogue needs to be on how the mental health system can support the person in crisis and their family. That includes, says Kimball, listening. “Observe, hear, and reflect their thoughts back to them.” Before and after stabilization, it’s the person’s family that’s often the safety net, and they need to know how best to support the person and one another, including themselves. “By allowing family members to be involved, you’re increasing the likelihood of recovery because they have unique insights into the person’s symptomology, and by involving them in the recovery plan, they’re more likely to be better recovery partners.” This, says Kimball, prevents further crises and strengthens comprehensive support around the person in need.