A Story of Utah Healthcare

On Sunday it will have been nine weeks after my son left home in psychosis, convinced that a casual remark I made about calling Vocational Rehab for help with a job meant I was (in his mind) a sociopathic narcissist who he wasn’t safe to be around. He left a home to live in his car, with no savings or income. It’s not the first time that he has done something like this, but each time I worry that it might be the last time I see him.

In February there was a national shortage of his antipsychotic medication, a long acting injectable that he took every four weeks to relieve symptoms of psychosis.  Although it didn’t “cure” him, he was stable and had been at home since his last big break in 2019. Since then we had negotiated through parole visits and mental health court. He struggled to work steadily but couldn’t keep a job. He has worked at more than 40 places since he was diagnosed, but hasn’t averaged more than 3 weeks in any single job. In almost all of these jobs he has chosen not to reveal that he has a mental illness. He is fired, or quits, or stops showing up.  There are unreported accidents from work. There are timecards left unsigned and unaccounted. There are customer complaints, or employee complaints, or HR reports. Oftentimes he would come home to say that a co-worker was one of the new voices in his head tormenting him, and he didn’t want to work around them any more.  

To make up for the temporary shortage, his prescriber decided that another LAI could be prescribed. I had immediate concerns because we had tried switching over to this other medication before, and the results were that he lost efficacy in his treatment.  The three of us got on a Zoom call to discuss treatment options, and the doctor was steadfast that the treatment would work with a new method of onboarding doses before transitioning to a more standard regimen.  I was skeptical, but my son trusted the doctor and we agreed that this new plan would be followed. Less than a month after beginning the transition I contacted my son’s doctor and counsellor to say that there were some minor but noticeable changes.  It didn’t appear that the new medication had the same therapeutic effect as the one it was replacing.  This was the beginning of me regularly emailing the hospital to describe my concern as his psychosis became apparent. My son was beginning to drift into paranoia, and it was going to get harder to bring him back each day we delayed. The prescriber suggested that my son supplement his shot with an oral-form antipsychotic. This was not suitable at all – the entire reason we were using a long acting injectable was because my son didn’t take oral meds.  They asked him to come in to pick up the oral medication, and he agreed but didn’t show up. He re-scheduled, then called and cancelled the appointment.  He didn’t want to take the oral meds. He didn’t want the injection either.  He just wanted to be safe because he didn’t trust the hospital anymore, and he didn’t trust me.  

In the week before he left he would come upstairs and talk to the pets. “I’m not afraid of you”, he would say. He no longer looked at any of us, instead he would look up, or look past us, or ignore us altogether while drowning us out with the music playing in his ear buds. At night, when we were in bed, he would go to the same computer that I’m typing this on to watch Youtube videos on narcissism, trauma bonding, sociopathy, tarot and astrology.  I was finding drawings and symbols that were his attempt to cast protective spells and use magic. When he found work he would often complain that a co-worker was a narcissist.  Now that he wasn’t able to work and became more isolated, he was beginning to turn this view on me. When he left he broke his bedroom door. He was angry, or afraid, or both. I didn’t stand in his way, and just let him take what he wanted before he left home. 

My son decided in his psychosis that his doctors and counsellor who had been with him for the past 5 years weren’t safe. He decided that his family wasn’t safe. He decided that the course of treatment he had been following wasn’t safe. He left home without money in his account, without a job, with no place to go.  I was keeping tabs through his hospital until he stopped talking to them. I have called the local police department to explain that he’s out there, and if they meet him they should have a note on file that he has paranoid schizophrenia but has typically been cooperative with police. I wait to hear something, but there is nothing.  I lie awake at night wondering if I would hear him come in during the night when he is routinely up and about.  I wonder if he wants to come home but thinks he can’t.  In one of our last exchanges I told him I didn’t feel safe around him because he was using threatening language about me. I didn’t want him to come home, not until he was willing to get help. 

A few weeks ago there was an officer-involved shooting near my home that involved reports of an adult male looking into cars at a nearby park that I knew my son frequented.  When officers responded in early morning hours, the person was aggressive and was shot and killed. The area was shut down while the investigation of the scene followed. When I heard, I panicked.  Could that have been my son?  I got in the car and drove to see, not sure what I would find.  When I arrived on the east side of the park, I could see his car and my heart sank. All I could think was “Please, no“.  I approached the car slowly. The windows were down. As I came past the vehicle I could see him, sitting in the back seat.  He saw me too, and he wasn’t happy to see me. But he was there, he was alive.  

I don’t know when I’m going to see him again.  I don’t know under what circumstances that I hear from him, or from the hospital, or a police officer, or from the metro county jail.  I have lost my son to psychosis, again.  As an adult, only he can consent to receiving treatment. The exceptions being that he is a danger to himself, or to others.  As his father I cannot request help, and I can’t talk to him in a way that would make him want to seek help.  He has been at UNI twice. The first time I implored him to get help because I was losing my son, the second time he was committed because I found him after a period of homelessness, bloodied and seeing “how far he could go” to cut himself. He doesn’t want to go back, and he thinks he knows better.  

It’s hard to say all of this.  I’m truly at a loss, and I don’t know what to do. We don’t have any laws to protect us from ourselves, and we don’t have any laws to step in when someone is experiencing psychosis.  It doesn’t matter if it leads to financial ruin, or destroying your health, or if it takes away the stability that you worked for years to have.  None of this matters.  

How do I get my son back?  How much will he suffer before something can be done? My heart is breaking for him, for my family, but also for every family who shares a similar story of loss. 

Update: Some readers responded and pointed me to Unsheltered Utah, a 501(c)3 nonprofit with outreach in the south valley. I have contacted them and they have engaged my son. Thank you.