Voluntary medication supervision fails
Mandatory supervision was the only time he had been stable and it needed to be reinstated
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.
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 made a strange statement to an official, such as talking about “the ascension,” that 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 well 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 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.
“Bill, if you’re not willing to go to the hospital to get medicine then you need to give your spare key to your team so they can bring you meds and monitor you,” I told him. After a lot of arguing he said he would give his spare key, and he also agreed to answer his phone. My immediate goal was to have people look in on him to monitor his meds, but I doubted that would work long term. He took his meds on that call and agreed to continue to do so. He also said he wanted to check in at Bayside, the crisis center, to finish recovering. He made a plan to go with his social worker to a phone store to get a new phone charger, since his phone wasn’t charging properly and filled out the paperwork to get food benefits. The plan was to go to Bayside after getting his phone fixed.
The team informed me that they had arrived at his apartment and reported that Bill said he didn’t feel up to the trip. They gave him hotline phone numbers. Finally on Sunday, Bill answered his phone. He said very little but wasn’t having any clear delusions. He said he was doing ”well” and was “busy” but couldn’t say with what. He admitted he had cut down on his meds. I encouraged him to take them, trying my best to be supportive but inwardly raging—at him, at myself, and at the mental health system for failing to get him on a stable dosage. I was so frustrated at him that I felt like screaming at him but I bottled it up because he needed me to be calm and in control. When the team members were in his apartment had they actually tried to coax him to go with them, or did they just accept his no without making an effort?
On Monday, the social worker took him to get a new phone charger but didn’t take him to Bayside or the hospital, saying she had no grounds to take him to the hospital, even though he had said he was willing to go. It seemed like a continuation of his long history of repeated decompensations. In the past there had been a lower threshold for hospitalization, especially for someone whose illness was so severe.
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.