I flew as quickly as I could get there to see my son. Something wasn't right and hadn't been for a while. The wildest PTSD, I thought. Didn't have a frame of reference for what I was witnessing. His windows were blockaded with wood, and him pacing and talking about people being after him. I stepped outside, walked down the street where he couldn't see me, and called for help: 911, nope, can't help - he hasn't done anything. VA hotline, nope, very sorry. Another hotline - we can't help "but are you suicidal"? Are you effing kidding me right now? Am I suicidal? I AM CALLING FOR IMMEDIATE HELP FOR MY SON, NO, I AM NOT SUICIDAL... YET!!! GET US SOME HELP!! Nope. "Try 911" - already did that. What in the world???? Another hotline: check out our website for more resources. I don't have time for that - what is going on? What's about to happen to us? How is this possible to be denied in so many ways? My son's commitment as a soldier ... he saved people. He was awarded medals. I just can't fail him. We can't fail him. We. are. failing. him.
Website resources from a NATIONAL source... wellness tips for caregivers while our loved ones are psychotic, is this what counts as help? Deep breathing, yoga, support meetings to ‘share your journey,’ bunch of crap when what we need is medical intervention. Is this what they meant when they said the system was broken? Broken because why? Because someone in authority hasn’t lived this nightmare? So no one has taken the time, or considered it a priority, to make sure our sickest, our most dangerous, our most vulnerable, the people who cannot help themselves because they do not know they are sick, actually get treatment?
Call after call after call after call after call.
Websites and research til the wee hours of the morning every night for weeks, for months, working on years now. For what? To be told no so many times and in so many ways... And back to the same story of the psychosis from when the first calls were made, from the highway "Sorry police can't help he hasn't done anything wrong..." Well, we're flying down the highway at the speed of sound are you sure about that?
Crossing state lines in a caravan — because in his mind it had to be a military caravan, with precise spacing and no one falling behind — we called 911 again. Sorry, nothing we can do here! Still moving, more calls made, sorry can't help you, he hasn't done anything wrong. "Maybe he will talk things through with you? Oh yeah, that's freaking brilliant, as if we hadn't tried everything before calling an emergency line? Are you freaking serious right now? This is a HELP LINE??"
After so very many phone calls and pleas, police were set up to meet at what we thought might be his destination. It worked! He got put into the hospital! Yay! Wait, what? Is it already time for him to be discharged? Well, what's the plan? There is no plan?!!! Just a prescription for him to take that he refuses because he doesn't think he's ill!!! It's up to me now? He's so pissed at me for having him "go to a hospital full of crazy people" that he is threatening me, still psychotic, and it's up to me to make sure he takes his medicine that he insists he will never take?
What's next? Shall I call a help line and tell them that yes, I've decided that maybe I'm suicidal now? Then what? Will that get me beyond "thoughts and prayers"???
Each story is shared by someone impacted by untreated SMI,
lightly edited for clarity, never for meaning.
Do you have an ask? If you were sitting down with your legislator, how would you ask them to help you?
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Create a clear, rapid-response pathway for families reporting untreated psychosis, so law enforcement and health providers can intervene before a potentially dangerous event.
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Require that calls about active psychosis (anosognosia, delusions, barricading, paranoia) trigger an in-home clinical assessment team within hours, not a hotline script.
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Update state law to make psychosis with anosognosia an automatic trigger for evaluation, not contingent on suicide threats or overt violence.
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End ‘prescribe and discharge.’ Require hospitals to create a documented treatment and safety plan, with mandatory consideration of Assisted Outpatient Treatment (AOT) when anosognosia or safety concerns are present. PUT AOT INTO PLACE WHERE IT IS NONEXISTENT EXCEPT ON PAPER.
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HIPAA must not be used as a shield to exclude families when they are the only ones at risk. Fund and mandate a dedicated line separate from suicide-prevention hotlines, so families don’t get stuck in endless “are you suicidal?” loops when the crisis is about a loved one’s untreated psychosis.
