My daughter had her first psychotic break Mother's Day weekend 2004. While we didn't know what was going on or even what kind of facility we ended up in, at one point, the behavioral health system said they couldn't "admit" her so we had to take her home. After a horrible 4 days of no sleep, thoughts that made no sense, police intervention for no crime, but anyone with a psychotic loved one knows cops just happen with these illnesses, she ended up being admitted against her will. I know we are lucky in my state as we allow for involuntary treatment here. But the trauma of trying to get care when she is psychotic has haunted us for the last 21 years. She has since had 5 more psychotic breaks from stopping or reducing medication and in one case, the one she was taking just stopped working.
It is so different from any other illness one might have. You can't just go to the doctor and get help. It's a sea of red tape, laws and people's opinions who aren't doctors to decide if and when a psychotic person can get care.
My daughter has a history of psychotic manic episodes along with Capgras delusions which can be dangerous. According to Copilot "Capgras delusion, also known as Capgras syndrome, is a psychiatric disorder where an individual believes that a close friend or family member has been replaced by an identical impostor." In her case, the loved ones are me and her dad. Her last psychotic breaks was at the end of last year, complete with mania and Capgras delusions. Anyone reading this who has been through this knows there are many details left out here. But in any event, I was able to get her taken to the ER via the EMTs. The ER called me as soon as she arrived. The nurse told me they were going to petition to be involuntarily admitted to our state psych place. They didn't need to. My husband was already on the way to the facility to do that. That wonderful communication stopped when she left the ER.
We had to go through the typical trauma of hoping and praying the behavioral health care system kept her. Most doctors that saw her agreed she needed to be there. But there's always one that will scare the heck out of you and act like she might not. The most troubling thing with this hospitalization was that our facilities now make the patient give anyone who might want to visit a code before anyone at the facility will even tell you if they are there. This is rather ironic, not to mention cruel, when her dad and I were at the end of her threats and we were the ones who filled out the paperwork that got her there. I have legal guardianship so after 3 days of getting them the exact paperwork they needed, they gave me the code and I was able to see her. I asked my daughter what her code was and naturally, she didn't know.
After 21 years, you'd think we'd be more used to this then we are. Instead, I find myself feeling extremely traumatized, wondering what will happen the next time. Someone has to make it easier to take care of people who have psychotic disorders.
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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Make our hospitals stop using the code policy.
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Make our hospitals that take care of our SMI loved ones a little closer to the way other hospitals operate. I know there needs to be more security with people who are psychotic, but visitors should not be treated like the problem.
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Make the 988 system work for people who are psychotic. Send out teams that include medical personnel who can determine if people need to be hospitalized.
