My response to a father’s soul-searching letter about how to care for his bipolar adult son:
I’ve read your note from 4-27-12 and it got me thinking.
You raised questions about how to treat and support your son Peter, whom we all presume to have bipolar disorder. In particular you have a concern about the “moral hazard” of supporting him in the midst of his paranoid delusional state, by which I think you fear that you’ll seem to be rewarding his psychotic process.
We both have a serious concern for Peter's well-being, you as his father, me as his physician. Your questions have a familiar ring to them: I’ve heard them from other families and from myself, and they’ve resonated through the whole history of “modern” psychiatry. I revisit them every time I become involved in the treatment of a new patient with bipolar disorder. Each time I have to wrestle to the answers as if it were the first time. My process this time was to re-read an old document from the 1500’s called The Malleus Maleficarum (the Witch’s Hammer) written by a couple of Dominican priests and generally considered the first modern taxonomy of psychiatric disorders. Not quite as complete as the DSM-IV, but not bad. Bipolar is described pretty well, ascribed to a witch’s spell, and treated with torture. This isn't a novel treatment because pretty much all of the conditions they defined merited that prescription. Though the witch trials in Salem were run by Protestants, not Catholics, they actually utilized the same handbook.
The Malleus reminded me of a contemporary counterpoint. I thought it was in Ghent, but I looked it up and found it was in Gheel, Belgium that individual families took in psychiatric patients starting in the 1200’s. It eventually became the major industry of that little town, even drawing Van Gogh’s father 600 years later. He was looking for a place for his son. Each patient became a member of the caretaking family. Gheel was unusual though. More typical treatment for the mentally disordered was warehousing in an environment of not-so-benign neglect. They were often an embarrassment to the community at large as well as their own families. In England the Bethlehem Hospital , “Bedlam”, hosted freak shows of patients for the public to laugh at. That was the 1600/1700’s – folks were housed, not necessarily fed and neither bathed nor clothed except by Good Samaritans. The bulk of the people I’m talking about probably had either schizophrenia or bipolar disorder, though syphilis also accounted for increasing numbers by the 1800s.
Your phrase, moral hazard, reminded me of an idea introduced around the same time, something called ”Moral Treatment”. The concept was coined by Benjamin Rush, who also signed the Declaration of Independence, and supported by John Locke, upon whose philosophy the Declaration was based. The basic idea was that these folks should be regarded as having an illness rather than as simply misbehaving. With this paradigm shift came a change in treatment. Medical and psychological treatments were widely applied to the mentally ill for the first time in Europe and America. As the treatments have been refined over the last 200 years, the resulting improved behavioral control of the patients, not to mention increased social acceptance of these individuals, has effectively ended warehousing. But this state of affairs is far from perfect. The bulk of the “seriously mentally ill” population is not cured but rather simply less symptomatic. And the rest of us, their relatives, innocent bystanders, doctors, and the like, are not unaffected by them in that ill, albeit less symptomatic state.
As a personal example, some ten years ago I was walking through Santa Monica with my wife and two young sons on a Saturday night. There was a man camped in the doorway of a deserted store who was randomly screaming obscenities at the passing crowd. He was clearly psychotic. Without thinking about it, I walked between him and my children. The obscenities continued. I stopped and raised my voice to him: “Just because you’re crazy and frightened, it doesn’t give you the right scare my children!” He stopped for a second, then redoubled his rant. I walked away sheepishly. My kids were embarrassed for me, and my wife said, “Well that accomplished a lot.” I knew better than to expect him to stop, but neither could I stop myself. His behavior in that situation turned me into him. He was contagious.
What does all of this have to do with Peter? Several things. He’s mentally ill, most likely with bipolar disorder. Although he misbehaves, that behavior by and large stems from that illness. Controlling or even shaping his behavior therefore depends on first addressing the illness, not vice versa. During the middle part of the 1900s, the Russians, who were wed to therapies based on behavioral modification because of Dr. Pavlov, used the most powerful version of that treatment on what was then called “manic depressive syndrome”. Their research utilized a variant of the brainwashing techniques applied by the Chinese in the Korean War on American POWs. This kind of behavioral modification defines very clear goals and utilizes systematic reinforcers of both reward and punishment. There was no significant lasting effect. In other words, there are excellent research data on top of years of clinical experience which should make us pessimistic about a proactive approach to modifying behavior sans medication in bipolar disorder.
Can we forcibly medicate Peter? No. There’s no practical way to accomplish this outside of a hospital, and in many instances it is even illegal to do this in a hospital without a court ruling. Furthermore, such an approach has been ineffective historically, when tried in those times and places where it was more possible: the patient sees it as an assault, not a treatment. At the first opportunity, they attempt to escape the assault.
Should we support Peter, and if we do, how much and how close? In my experience, almost all families attempt to do this initially, and most families become emotionally exhausted in the process. There is a deeply felt instinct to protect one’s children from deprivation and danger, regardless of the genesis of their need. But caretaking is different from parenting. It burns people out. It makes them depressed. Most caretakers find it necessary to protect themselves from their charge and become emotionally unavailable or unsympathetic or angry. This is heightened when the patient/child/whoever has a mental illness. By virtue of unconscious empathy, mental illness is “contagious”, if we’re around it long enough, we are apt to identify with it or react against it the way I did with that street person. I think this process is behind those old stories of the torture or humiliation of the mentally ill.
In regard to Peter, I think you should support him, but at arm's length. Too close, and it’s clear to me he’ll injure you – that is, the caretaking will injure you. I can see the strain on each of you individually, on the marriage, and on the larger family. What would serve to mitigate some of this strain would be to obtain some public support for him (He cannot do this by himself). I’m talking about SSI, SSDI, Medicare, food stamps, etc. I’m not sure about his eligibility, but you can check that out. The money is less the issue than is the caretaking. Your relationship with John and his with you would be far less conflicted if somebody else stood between him and homelessness. If you go this route, remember the fastest any government support might be available will be six months, more likely a year, so Peter would require interim support.
I apologize for my rambling letter. What I said at the start is that I feel compelled to re-explore these ideas every single time I’m faced with this situation. Taking care of an adult child with mental illness is not an intuitive process for any parent, and counseling parents in your position is not intuitive for me. We are both strangers in a very strange land.
Allen Pack, M.D.