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.

Recovery from psychosis across the broad spectrum of psychotic episodes—including individuals with recurrent episodes—is highly variable, but research indicates that while many achieve symptomatic remission, functional recovery is less common and more prolonged, particularly after multiple episodes. A meta-analysis by Lally et al. (2017) found that approximately 58% of individuals with a first episode of psychosis achieved symptom remission at 12 months, yet only 38% achieved full functional recovery. Among those with multiple episodes, functional recovery rates declined substantially, with longitudinal data suggesting that after two or more episodes, fewer than 25% achieved sustained functional recovery (Wiersma et al., 1998). Repeated episodes are often associated with cognitive decline, treatment resistance, and social withdrawal, all of which hinder recovery. Nonetheless, long-term outcomes can improve with continuous care, early relapse intervention, and rehabilitation services targeting functional goals. Additionally, Lieberman et al. (2001) noted that early intervention and consistent pharmacologic and psychosocial support improve both the speed and likelihood of recovery.

In the case of my son, Bill, I attempted to intervene by supervising his antipsychotic medication, but I was only able to do so intermittently during my visits to him. Seated at his computer desk, I would tell him to get the medicine out, fetch him some water, and watch as he swallowed the pills. His mental status improved remarkably after just a few days: He stopped the echolalia (repeating words) and was much less distracted. Although still not back to baseline, he was a lot better. I was able to get his meds under control and make a plan to continue having him take the meds, which I would monitor via Zoom, after I returned home. This turned out to be an optimistic assessment since he had often stopped taking his medication before.

During this visit we also started to clean the apartment. “I’m only here for a short while. Let’s get as much done as possible,” I said. “How about we start with the refrigerator and get rid of the rotten food? Then at least you won’t get food poisoning.” He wasn’t organized enough to do this on his own, but he seemed willing: “OK, show me what to throw away and I’ll put it in the garbage.”

Bill worked intermittently on this task but was continually distracted and unable to complete it. He would work for a couple of minutes and then sit staring into space. He’d reached the limits of his ability to persist.

I coached him through the work. “Hey Bill, I need help here. Can you help me empty out the litter boxes? Just pick them up and empty the content into these garbage bags I have here.” I held out the bags to him as swarms of fruit flies and fleas circled the litter boxes. We had started to clean the apartment and got the refrigerator done but it probably needed a professional cleaning. Bill’s living environment had never been this bad.

After three hours of cleaning I was quietly discouraged. I realized that if Bill couldn’t even persist enough to complete this cleaning, it was unlikely he could get a job. I needed to stop pushing him to get a professional life and just focus on his stability. If he could be stable and happy, even something like stocking shelves would be fine. I decided I would have to take things a month at a time. I paid his rent so he wouldn’t be evicted, paid to have his car fixed, and worked with him on job applications and finding a new apartment.

I returned with him to the store where he had been working to get a termination notice so he could apply to have his benefits reinstated. I explained to his manager that Bill had been ill and why we needed a termination notice. The manager said. “We would be happy to hire him back when he’s ready. He’s a good worker and a good man.” In my experience, people ignore (as much as possible) when someone has symptoms of mental illness, making their distress even more invisible. I was touched by the man’s kindness.

I had arranged a meeting with his care team, including his social worker, her supervisor at the clinic, and the nurse practitioner, aka his “prescriber”—a label I find particularly annoying. It implies that the person’s primary function is to write a prescription rather than care for the patient. It implies that all health-care personnel with this designation are identical and interchangeable, even though some of them (like me) have spent years training as physicians first before sub-specializing in psychiatry, including training in differential diagnosis and pharmacology, areas highly relevant to determining the correct medication and dosage to prescribe. Also, health systems sometimes use the term ”prescriber” to sidestep the issue of staffing insufficient numbers of psychiatrists.

At the meeting, Bill and I sat at a conference table with a social worker who talked about forms she needed Bill to complete. I asked, “How will you monitor his medication? Bill, you promise to take it, right?”

He nodded.

“But sometimes he’s not good at following through with taking meds and he’ll need the team to check on him,” I said.

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“Is that OK, Bill?” his social worker asked him.

Bill nodded but didn’t say anything.

The Community Support Project model leans toward the assumption that the client would take the lead. This was certainly not the case for Bill now that he had decompensated, and I tried to impress on them that he would need closer monitoring.

“I haven’t seen Bill this ill for many years. How many days will you go to the apartment to see how he’s doing?”

“We’ll play it by ear. We usually stop by once a week.” I thought this was crazy; couldn’t they see how ill he was?

“Do you really think that’s enough while he’s so ill? It might be better to stop by more frequently until he’s more stable.”

I talked about how important it would be to make sure he was taking his medication and help him find a new place to live. He accepted an agreement that the team would drop off medication for him. I flew home thinking that I had helped Bill on the path to stabilization but also with worries about how the plan would be carried out.

I had bought him a ticket to Philadelphia for later that week so I could continue to monitor his medication, and in the interim Bill agreed to do Zoom calls where I could watch him taking his meds. The first night, he took his dose, but his thought disorder continued. He jumped between topics so frequently it became difficult to follow his thinking—not surprising, since it usually took many weeks after he had a psychotic decompensation for him to stabilize.

He hadn’t done any of the cleaning tasks we had discussed.