My intention in writing these posts is to share the experiences that I went through with my son, starting with the first manifestation of his illness and our journey through numerous subsequent episodes. It’s also to provide commentary as a parent and psychiatrist on issues that these experiences bring up, such as how the diagnostic process works in mental health, and how to work with treatment providers and medication issues. My hope is that reading this may be helpful for people with mental health issues and also their families and friends.

Ongoing episodes of psychotic illness are associated with chronicity and lack of recovery (Wiersma 1998). In bipolar disorder, patients have cognitive impairments during both mood episodes and while euthymic, demonstrating the ongoing effects of increased vulnerability to stress.

Some investigators have likened this to a “kindling effect” (Post 1992). In a meta-analysis, cognitive impairment manifested in deficits in attention, memory, and executive function in a substantial number of patients, depending on the level of illness severity. (Cipriani 2017; Cullen, 2016). In a transdiagnostic study (Solmi) of 299,888 patients, data demonstrated that long-acting injectable neuroleptics were superior to oral medication with decreased illness and functional decline; mandatory treatment also accomplishes this by ensuring compliance.

This was my experience with my son Bill. We talked about getting ready to come to Philadelphia. “When you go to the airport you shouldn’t talk to anyone because it might cause trouble,” I told him. I was worried that if he got distracted and made a strange statement to an official, such as talking about “the ascension,” he could be detained. I emailed his team that I was hoping they could send along a week’s worth of medicine. The next day, the day before he was scheduled to fly to Philadelphia, he was AWOL from our Zoom call. I had a sinking feeling. On the phone, he kept repeating, “Everything’s OK, right?” He was more psychotic, talking about energy force fields flying through the window. When I asked about pretty much anything, he said, “I’m still deciding.” I had hoped that by bringing him home, I could get extra doses of meds into him. He absolutely needed to be hospitalized, but his “prescriber” was a nurse practitioner who hadn’t even seen him since he was discharged from the hospital. I asked him who on his team he had seen.

“Nobody.”

I was furious. Even when his prescriber had “seen” him, it was by Zoom, which made it harder to determine how he was doing. When he told me nobody on the team had even been in his apartment yet, I decided I might have to call the police myself if they wouldn’t do anything. The fact that he talked about “the ascension” might be useful. I imagined going to the media with the absolutely disgusting photos of his apartment and letting somebody write about the state of care for the seriously mentally ill. But of course, I wouldn’t do that. I still needed his team to help him. The way things had deteriorated made me feel more helpless than ever.

On the day of his flight, Bill went to the airport but drove past the parking lot without stopping. Two hours after he was supposed to be on the flight, when I called his phone, I wasn’t able to reach him. We didn’t connect until later, after he had given up and gone home, with no explanation of what had happened. I told him to return to the airport and I would get him on the next flight. He left his apartment but stopped at a fast-food restaurant and didn’t make it to the airport in time. I called him frantically every few minutes to see if he was at the airport yet, but he didn’t pick up. When we spoke later that night, it was clear he wasn’t able to make rational decisions. When he called me the next day, I told him he either needed to be in the hospital or give the spare apartment key to his team.

“Bill, I’m worried about you. This is not like you, being so disorganized. I really think you need to be in the hospital.”

“I’m fine.”

“No, you’re not fine, your bipolar illness has flared up again. You need to get on stable doses of meds. We know from past experience that you’re not going to get better until you do.”

“I’m not going to the hospital. It doesn’t help.”

I knew, given the way mental health law is written, that a person has to be in imminent danger of self-harm or an imminent threat to others, and that if Bill refused hospitalization, he likely would not be hospitalized or would be quickly released, like the last time. In that sense, he was correct that hospitalization hadn’t been helping him, but I could tell how ill he had become and felt that our only objective should be to figure out a plan to get him back on medicine.

I realized I had to figure out a way to get an involuntary court order for medication reinstatement. The only time Bill had ever been stable was when he was on mandatory supervision of his medication.

A week later we had a series of email exchanges. Reading these now brings tears to my eyes. These are the last email exchanges—or exchanges of any kind—that we had. Looking at them now, I can see from how little he wrote that he probably had what we call poverty of thought, likely due to being psychotic again, and with the accompanying thought disorder he couldn’t fully express himself.