‘It was a miracle when we found my brother a place to live’
If you would have told me 25 years ago that my family and I would still be caring for my brother, I wouldn’t have believed you. He suffers from schizophrenia and has wreaked havoc on our family emotionally, physically and financially.
When we found him Section 8 housing in San Rafael 12 years ago, it was a miracle and only happened because we knew somebody who knew somebody.
This year, the Non Smoking Ordinance rendered him homeless. The man who drafted this legislation told me he 'just didn't think about' how the law would impact the mentally and physically disabled people who simply are unable to quit.
The people who owned and managed the housing were so compassionate and tolerant toward him, and tried in vain to get him to stop smoking on the premises before he was kicked out. But he really didn’t belong there. He belongs in institutionalized housing and care.
Now, we are housing him in a warehouse, trying to care for him. Families should not have to provide psychiatric care for their loved ones. It just doesn’t work. I am trying to scrape together a loan to buy him a place so that he can’t get kicked out again.
A person suffering from untreated schizophrenia simply does not have the capability to make decisions on their own to benefit them. I firmly believe in compassionate but forced medication followed by care.
People don’t have a clue of the horror you have to go through to care for a loved one struggling with mental illness. I can’t really talk to people about it because they just don’t understand. Basically, if you are mentally ill in America, you are shit outta luck. – Robert Butlerman, Bay Area, CA
’In a nation with a better mental health care, I might have been relieved by the knowledge that my brother was being cared for, rather than the fact that he is dead’
My family was briefly involved in caregiving for my brother, before he tragically ended his own life. After he died, I read his journal and learned he was living a nightmare: convinced he was in hell, that we were demonic forces out to get him, and also suffering from visions of self-grandeur.
In his early twenties, he began exhibiting symptoms of schizophrenia and bipolar disorder, which exacerbated rapidly and aggressively. To our great distress, there was little we could do. John (not his real name) was paranoid and distrustful, and resistant to any form of contact from us.
In 2010, the police found John living in an airport. My mother was able to convince him to come home with her, and our family was reunited for Christmas, which would be our last together.
It was heartbreaking to witness him in such a state of misery and to not be able to help him. On Christmas Eve, in a fit of rage, John threatened to kill himself if my parents did not give him money for a plane ticket, we had the great relief of hearing the words that we knew could get him forcibly institutionalized. We called the police and were able to have him brought to the hospital by ambulance.
My brother was released from the hospital after 10 days, which is not even enough time for a proper medication schedule to take effect. A mere month and a half after he was released from the hospital, he turned up at a San Francisco hospital, where he checked himself in and was found to be dehydrated. He was given some sort of treatment and promptly released. From the hospital, he headed directly to the Golden Gate bridge, which he jumped off.
Only because of John's hospital visit, from which he was still wearing a wristband, were authorities able to identify his body.
While I would give anything to have my brother back, it is terrifying to imagine many more years of the stress we experienced that Christmas, trying to constantly chase John down and keep him alive. He was suffering horribly during that last year; life was torturous for him, and his inability to care for himself made everything even more painful. When he was alive, every minute of every day I wondered, “Where is he now? Is he in pain? Is he scared? Is he hungry or thirsty? Is he safe?” I worried about the long-term cost – financial and emotional – to my family to keep him alive. I am no longer plagued by those questions. In a nation with a better mental health care system, I might have been relieved of them by the knowledge that he was being cared for, rather than the knowledge that he is dead. – Amy, Chicago, Illinois
’I have given up my own business and we have been through