Twelve years ago, I got a call from the director of the halfway house where my schizophrenic 50-year-old sister had been living for the last fifteen years. He said he was very sorry, but my sister had just died of a heart condition, and how did I want to handle it? I found this impossible to believe because my sister never had a heart condition. I figured they must have increased her clozaril, stelazine, lorazepam, carbamazephine, lithium and thyroxine, so much that it killed her. The director explained that Kathy had the flu and they’d called a doctor for a prescription. Kathy had said she was hungry, so they gave her a sandwich and sent her into her room to rest until the prescription arrived. When they came to deliver the prescription about an hour later, she was on her bed, dead of a heart attack.
Something was fishy. The director of the halfway house seemed to be racing me into making funeral arrangements. What were they covering up? I demanded an autopsy. The director stammered that an autopsy would be very expensive. I insisted. I ordered the autopsy and waited for the results. It turned out that contrary to what the director had told me, my sister did not die of a heart attack: she choked to death on a half-eaten roast beef sandwich. I thought about suing for negligence, but I knew I couldn’t really prove anything. Besides, having seen Kathy scarf down her food on numerous occasions, I knew this was a highly possible conclusion.
The last time I’d visited Kathy, she’d lost at least twenty pounds, her clothes hung from her body and her skin sagged, making her look twice her age. She’d also developed a limp. When I asked the caseworker about it, she said that Kathy had seen specialists who claimed there was nothing wrong with her leg. She spoke in a very loud high-pitched voice and smacked her lips together (tardive dyskenisia). I couldn’t figure out if she was being over or under-medicated, but she had drastically changed.
Even today, I often think about her, especially when I learn about cases such as the severely retarded Katie Strignano, whose mother suspected a caretaker had increased her daughter’s medication without consent. In well over a decade, nothing has changed for mentally and emotionally challenged patients. They are still treated as pariahs. I am sure it is because caregivers and doctors, frustrated with the nature of the diseases which makes the patients uncooperative, probably lose their patience and take it upon themselves to over-medicate, simply hoping the patient will stop acting out.
From the age of ten, I lived with the guilt and humiliation of having a schizophrenic sister. No one in my family discussed the fact that she was mentally ill. When she left home for her first institution, we said she was away at boarding school. When she left the Philadelphia Psychiatric Institution for a halfway house in Lancaster, we said she was away at college. We never questioned the treatment she was receiving and never understood why she became progressively worse. I don’t know if she was over medicated or if her needs were ignored. We left it all up to the mostly anonymous staff. When I read about how Katie Strignano’s mother had publicly questioned her daughter’s sedation and new symptoms, I was relieved because this means something has changed after all—the families of mentally challenged individuals are beginning to ask for accountability and fight back.
NYC-based Margie Goldsmith has traveled to 118 countries and written about them all. She is a contributing writer for “Elite Traveler,” blogs for “Huffington Post,” and is travel editor of “Women’s Running.” Goldsmith contributes to “Robb Report,” “American Way,” travelandleisure.com, “Wine Enthusiast,” “Islands,” “National Geographic Traveler,” “Private Clubs,” “ForebesLife” and others. She specializes in luxury, adventure, lifestyle and culture. She is a published novelist, winner of eight national writing awards, speaks decent French, bad Spanish and is learning blues harmonica.
