(April 5, 2013) Six weeks ago, my life was turned upside-down in five minutes when my schizophrenic adult son killed my mother as she was eating breakfast.
Levi had never raised a hand in violence against me or against his grandparents, but for many months he had believed a hallucination that his grandmother had tried to kill him. He could not stop believing that she was evil, no matter what we said. His schizophrenic disease had been developing for many years, but we could not persuade him to accept medicine to treat it. Instead, he believed that he was an angel with alien cyborg parts. Without clear, imminent signs of violence, we could not force treatment.
What a contrast with my past experience raising a bipolar child. "Devin," my child with bipolar, is now 23 and although he still has many challenges, he is a responsible member of society who accepts his illness as just part of life to manage. His personal form of bipolar disorder is very depressive, not manic; there is no doubt in my mind that, untreated, he would have died by suicide in his teens. The odds were always against his making it to age 25, and we're nearly there. The credit for every step of the way goes to advice I received in our support groups. He was put on the wrong medicines more than once, and I only knew they were wrong because other parents told me so.
We all hate spending money, but it's a blessing when money can actually buy a solution. With "Devin," it could. At several points, I made high-stakes decisions to spend obscene sums of money getting him to experts outside our local area. I'm sure I threw at least $2,500 at the problem in just one year. We paid $1,700 for just one high-profile evaluation at Harvard, as the only way to get him off a wrong medicine that was killing him by inches. Then we took a train (every six weeks, all year) to NYC to see a pediatrician who specialized in bipolar children, and he didn't accept any insurance. We paid "out of pocket"---to put it mildly. Mental illness is a mugger. It sneaks up on you and says "Give me all your money or someone will die."
When my older son Levi began showing signs of schizophrenia, he was only 13. There was still time to throw money at the problem and save ourselves. But nobody recognized the signs of illness; it developed under the cover of Asperger Syndrome so he was expected to be “weird.”
There wasn’t a specialty organization for early schizophrenia, so I didn't have parents pointing out the bits that didn't fit, telling me "that's exactly what my kid did," or "that is not Asperger’s syndrome that looks like psychosis, please get help now." As he lost the ability to concentrate, withdrew from human contact, stopped smiling and was chronically offended, we could have put him on an antipsychotic medication. But we didn’t know. We tried to find places where he could succeed, not knowing that he was slowly losing his ability to understand the real world. He had three semesters of college credits completed when the disease finally blew the whistle on education. By then, Levi was over 18 and we had no legal way to make him get treatment. He talked about demons and scribbled on the walls, and we pleaded with him to get help; but diagnosis didn't come until the disease finally broke out into really public view, not long before he listened to a voice one last time and killed my mother.
None of the help I had for "Devin" was available for Levi.He turned 18 and we lost legal control; he was diagnosed with schizophrenia at 25 and nobody could make him get treatment. Money can't help us now; my mother is gone forever, and Levi will spend his life in the hospital. I cry every day because I miss them both so much. It should not have come to this.
RUTH JOHNSTON
Author and mother of two children with severe mental illnesses
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