Locked Out of My Brother's Care
In June of 1998, I got a call from the NYPD about my brother, Michael. He had been wandering around the nineteenth floor of the Waldorf Astoria Hotel with a suitcase and told security he was there to meet President Clinton. When the NYPD arrived, Michael was agitated, confused and hostile, and they took him to Bellevue for examination. During his exam, Michael told the doctors he had had open-heart surgery at the White House. When I saw him at the hospital, Michael had been sedated – he was drooling, shuffling and unable to carry on a conversation. My brother wasn’t my brother – he seemed to be gone. Michael had never been diagnosed with a mental illness, but at 26 years old, he was diagnosed as a Type A schizophrenic, which explained a lot about the last few years.
When he was a young adult, we were able to place him in an independent living program for the learning disabled in New York, where he seemed to function well at first. But after a few months the social workers from the program were calling constantly. Michael missed appointments, didn’t attend the day program and isolated himself. When we arrived, we would have to convince him to let us in. Once inside, we could see the apartment's condition was atrocious. We removed 10 to 20 bags of garbage from his apartment numerous times. Michael told us that he couldn’t leave the house because people were following him. He constantly called 911 about heart attacks that the emergency room determined were really panic attacks, and he repeatedly told us he was Metallica’s band manager – the fantasies and paranoia were getting worse, and we knew something was wrong.
His delusions and trips to the ER culminated in his hospitalization at Bellevue and his diagnosis of schizophrenia. We wondered how we had missed the signs, and we agonized over the fact that we had no idea how much he was suffering. How did we not put it together earlier? He was clearly showing all the signs. How did his family, the case workers and the psychiatrist all not get that he was suffering from a mental illness? On top of that, Michael also has anosognosia. He doesn’t recognize that he is mentally ill and needs treatment.
“After being in crisis for over nine months, our family was finally able to secure a bed in effective supportive housing for Michael.”
After being in crisis for over nine months, our family was finally able to secure a bed in effective supportive housing for Michael. But within a few years he started disappearing from his residence for longer and longer stretches. He usually ended up in a homeless shelter or the ER, at which point they would hospitalize him, stabilize him and return him to his residence.
This vicious cycle repeats itself over and over, and frequently our family can’t get any information on Michael due to HIPAA. Research proves that people with mental illness have better chances when family is involved, but HIPAA laws can often keep family on the outside looking in. We need legislation that changes the way HIPAA is applied in the cases of the seriously mentally ill. And we need beds available immediately for people in crises, adequate treatment for those suffering and support for their families.