The end of the journey

when I found his body on the floor

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.

By this point, after four days with no response, I was quite alarmed . I called his social worker multiple times to request that she get him evaluated at the crisis center, but she said he wouldn’t answer his door and, therefore, she couldn’t get him evaluated. I explained that it wasn’t like him to go for almost a week without being in touch. I begged her to get the police to do a wellness check. She was not willing to get the police involved because she had “no evidence of danger.” I considered countermanding their decision and getting the police involved myself but again I didn’t want to risk alienating the team. The social worker said they gave him food vouchers several weeks before, so even if he wasn’t taking care of himself or his apartment, he wouldn’t starve. Their cavalier attitude, given everything we’d seen from him, floored me.

I contacted the lawyer who had originally helped set up Bill’s special needs trust to ask if the Health Care Power of Attorney (POA), which Bill had assigned to his brother Mike, could be used to enforce treatment. The attorney said that unless Bill surrendered his power, he could override Mike unless Bill was found to be incapacitated. He also said sending the POA to the emergency room would not result in any enforcement unless Bill was there and determined to be unable to make any health care decisions. Finally, while I could petition the court, it would be up to the judge to determine if Bill required outpatient treatment, which Bill would have the right to refuse unless the judge overruled him.

Two days later, the social worker reported that they had gone to the apartment and used the key to open the door, but they couldn’t get in because it was chained from the inside. Looking back, I think he was probably either medically ill or so acutely psychotic that he was non-responsive. Or possibly already dead.

I asked, “Don’t you think he might be medically sick or acutely psychotic?”

She stated that when they were at the apartment, they looked in the window and had seen him moving inside. Based on this, the police were not willing to intervene.

Calls to his phone went immediately to voicemail. I had set up an outpatient appointment with a private psychiatrist but had to cancel it when the team couldn’t get him to come to the door so they could take him to the appointment. I rescheduled for the next available slot the following week, and booked a flight so I could take him myself. I realized I needed to go up there for however long it would take to get long-term plans in place for him. I booked a one-way flight.

I got in touch with the former director of mental health of Dane County, a highly respected psychiatrist and staunch advocate for the seriously mentally ill. He suggested a “fifth pathway” to get commitment for treatment: reinstatment for someone previously on a commitment who relapsed which could be initiated by his outpatient team. He said Bill sounded “workable,” since the things he wanted — an apartment, a job, and friends —were things that, if he got stable, were achievable. His words gave me a sliver of hope.

I contacted the team to tell them I would be arriving in two days and that the apartment manager had agreed to let me into the unit. I was disappointed that they had not alerted me to the possibility of reinstating his commitment, or—an equally disturbing thought— maybe they didn’t know? I had arranged an appointment with a psychiatrist highly recommended for working with seriously mentally ill and was flying in the day before. I hoped that he would recommend hospitalization and work towards getting a commitment for treatment since this seemed like the only thing that would keep Bill well. I was convinced that Bill was holed up, acutely psychotic and paranoid, not answering the door because he was frightened. It didn’t occur to me that he could have died.

I had also arranged with his team to meet me at the apartment in case he needed to be hospitalized immediately. While I waited, I went to the door of Bill’s apartment and knocked repeatedly, “Bill… Bill please let me in.” No answer. While I waited, I mentally went through all the things that would need to be arranged: a trip to a psychiatrist who would evaluate him, finishing paperwork for reinstating SSI, finding a new place to live that he could afford with lower SSI funds, cleaning the horrible mess in his apartment and repairing the damage . I was focused on solving all the problems that would remain after the acute problem was under control. Looking back, I was probably distracting myself from how frightened I actually was.

The maintenance man arrived and cut through the chain. I hurried into the ominous silence and found his lifeless body. We called the police and the medical examiner’s office, and I drove back to my hotel, where my son Mike would meet me after driving up from St Louis. I was too numb to cry, desolate and devastated. Images of Bill’s childhood, adolescence, and young adulthood flashed like sunbeams bouncing off ripples in a stream. I saw Bill laughing as he frolicked with his brothers, his mischievous grin as he climbed higher in our tall backyard tree, beaming proudly when he graduated from college. The contrast between the beauty of those images and his stark death was more than I could bear to contemplate. When Mike arrived, we hugged each other tight and sobbed. I told him how guilty I felt, and he comforted me:

“Mom, you have nothing to be guilty about, you tried everything, you helped him for years. At least he’s at peace now.”

I wished that I had been there more often in the past year. I especially felt that I should have known that he was too sick to wait to go the hospital. I should have flown up earlier.

I will never know how it happened. I feel an unending guilt for not acting sooner. How soon would have been soon enough? I don’t know. By the time he stopped answering my calls, Bill was likely only a few days from death. His team’s description of seeing him moving in the apartment must have been mistaken—because by coroner’s account, Bill was already dead.

Why had I had trusted the team’s assurances that he was OK? Why didn’t I go as soon as he stopped answering his phone and emails? I could have found a way to bring him home. I had been respecting his wish for autonomy to live in Madison. But how important were those wishes compared to keeping him alive? If only I had gone.