My son was in his first year of college when he started withdrawing, and having bizarre behaviors that I thought was just typical behavior of a teenager. He was later diagnosed with paranoid schizophrenia. That was seven years ago. It has been a very difficult and heartbreaking experience. My son was never a troublemaker before this diagnosis; however since the diagnosis, he has been arrested 3 times during psychosis. Prior to the arrests I have pleaded to his mental health providers to hospitalize him because I could clearly see he is decompensating. Each time, I have been told he’s not sick enough or not in immediate danger to himself or others. I have called crisis intervention teams several times, but they come in ask him if he’s suicidal and when he says no, they leave. I have even called police and pleaded for them to take him to inpatient treatment and they declined.
The last episode was two years ago. My son’s medication had been changed by his mental health provider; they stopped a medication that clearly helped him with psychosis symptoms. Within weeks, he’d lost his job, was clearly engaging with auditory hallucinations and had stopped taking care of himself. We called the clinic and informed them that he was deteriorating, pleaded with them to schedule an earlier appointment for evaluation and possibly hospitalization. We got no response. A few weeks later he was clearly in crisis, had not slept for days, was yelling and screaming, which is so unlike him. We called again and pleaded for hospitalization. We were told to call the crisis line. We called crisis line they came evaluated him and asked him if he was suicidal and he said no. They said he was not in imminent danger to himself or others.
I told them of his mental illness history and that he clearly needed help. I threatened lawsuits if they left him there and he ended up hurting himself or someone else. But they said he was not a danger to self or others.
We called the police department and pleaded with them to take him to inpatient treatment. They asked him the suicide question and said he was not a threat and left him. We took him to the emergency room and pleaded with the ER doctor to admit my son. They asked him suicide questions, and when he said he was not suicidal, they gave him a sedative and discharged him despite my protest and plea.
We took my son home; we had run out of options. A few hours later my son left the house got involved in an accident that caused injury to someone and was arrested. When we contacted his mental health team and the police department and told them that he was arrested and needs to be hospitalized, they told us that he had to go through the court system.It took two years in jail to go through the justice system for him to receive the care he needed. During this wait, he deteriorated so much and had lost almost half his weight.When we found out about our son’s diagnosis, it was very devastating to our family, realizing that our lives would possibly not be the same. We, however, didn’t anticipate the challenges and barriers we would encounter to get our loved one care. The disease is manageable with treatment; however, it’s almost impossible to get care when you need it.
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?
Change the law so families don’t have to wait until their loved one is suicidal or violent before intervention. Clinical deterioration and inability to care for self must be recognized as grounds for treatment. Require ERs and crisis teams to act on family input and medical history—not just the patient’s denial.
