Parent supervised medication
He now also needed oversight and help managing his apartment
Introduction
My intention in writing this blog 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. 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, 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.
Since my arrival I had been supervising his meds for three nights. 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 had improved remarkably over those three days—he stopped the echolalia (repeating words) and was much less distracted. Although still not back to baseline, he was a lot better. I had gotten his meds under control and made a plan to continue having him take the meds, which I would monitor via Zoom, after I returned home. This was an optimistic assessment since he had often stopped taking his medication before.
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.”
After an hour in the kitchen we moved on to the bathroom: “Now let’s really scrub out the toilet and bathtub. They are black with dirt and stain. Can you use a little muscle and get the stains removed? Here’s a brush for the toilet and a scrub brush for the tub and sink.”
Bill worked intermittently on this task but was continually distracted and unable to complete it. He would scrub 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. Bill seemed embarrassed and refused to go inside, so I went in and asked to see the manager. I explained that Bill had been ill and why we needed a termination notice. “We know Bill sometimes has illness that keeps him away from work,” 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.” This is 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, interchangeable, even though some of them (like me) have spent years training as physicians first before sub-specializing in psychiatry. Psychiatrists have training in differential diagnosis and pharmacology, areas very relevant to determining the correct medication and dosage to prescribe. Finally, 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.
“Is that OK Bill?” his social worker asked him.
Bill nodded but didn’t say anything.
I couldn’t help contrasting Bill’s team with his old team, his psychiatrist and social worker who had always greeted him warmly and helped him feel a strong connection. His current team was one of those under the community support project (CSP) umbrella. In the CSP model, for clients like Bill—who had previously been working, had his own apartment and source of income—the caretaker teams may be less inclined to really check on him to see how he was doing. 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 stayed fairly quiet but agreed with the conclusion that he needed to take his meds, and 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. As I had done earlier in his illness I wanted to plan out a series of steps since having a plan seemed to help him make progress as well as to feel more secure.
The first night, he took his dose, but his thought disorder continued. He still jumped between topics frequently, making it difficult to follow his thinking—not surprising, since it usually took many weeks after he had a psychotic decompensation for him to stabilize. He also hadn’t followed through on any of the cleaning tasks we had discussed, which shouldn’t have surprised me, even though I was hoping for the best.