• When your twin brother has schizophrenia

    I’m working on a little project related to severe mental illness (SMI). In the course of my research, Ron Honberg of the National Alliance on the Mentally Ill (NAMI) introduced me to an eloquent woman named Irene Flannery Wells. Ms. Wells’ twin brother Paul suffered from schizophrenia. He spent his entire life after the age of seventeen living in mental hospitals and various other supervised settings.

    I recently interviewed Ms. Wells over Skype. The first half of the interview can be seen here and here.  I purposely excluded the part of our conversation that centers around policy. It seems more valuable for the uninitiated to approach things from a less policy-focused perspective.

    I won’t attempt to summarize Paul Flannery’s many struggles. Ms. Wells provides much information at her website paulslegacyproject.org, and in this essay. After speaking with Ms. Wells, I would offer a few reactions…..

    Most obviously, some men and women with SMI require the help, monitoring, and supervision of long-term inpatient care.  We do not serve this population well. Paul Flannery lived in a New York state mental hospital for about 20 years. He could hardly be said to have thrived there. Yet in many ways he was happier and safer within a closely-supervised inpatient setting than he was anyplace else. Things might have turned out better if his community-based services were better-executed. As things unfolded, the aspiration of a more independent form of assisted living, maybe even in a studio apartment seems to have proved a cruel and false hope.

    After Newtown and some notorious instances of violence, we’re in a moment in which it’s compelling (but misguided in all sorts of ways) to view the mentally-ill through the lens of a small subgroup’s potential to commit an atrocity. For some subset of disturbed individuals, we can’t ignore that aspect of the story. Paul Flannery doesn’t seem to have been dangerous in that way. The pain of his illness was mainly endured by himself and by his family.

    And the practical and psychic burdens on his family were profound. These continue to this day. I don’t know whether it was wise to attempt to move him from the security and supervision of an inpatient setting into something else. Without question, a less-restrictive setting for Paul Flanner was a much more challenging and difficult situation for his family, particularly when his many siblings sought to imperfectly replace his mother’s dedicated efforts.

    I am also struck, listening to Ms. Wells, about how much tougher it would be to care for a sibling or a child with a severe mental illness than it is to care for someone with uncomplicated intellectual disability as our family does.  That’s not just my impression looking over the fence. Studies of caregiver burnout and well-being indicate sharp differences between caregivers of the intellectually disabled and those caring for loved-ones with severe mental illnesses.

    We have some difficult and sad experiences. We’ve been called on to perform some physical maintenance tasks I still find forbidding. When the time came to inject a blood medication in the fatty tissues of Vincent’s stomach, I was so thankful that my wife Veronica is an advanced-practice nurse. The logistics of our lives are sometimes dominated by the realities of caregiving. The economic consequences are significant, too.

    Still, unpleasant practical tasks can be less psychically draining than outsiders might suppose. We enjoy a simplicity and safety that Paul Flannery’s family would have loved to enjoy. Vincent doesn’t do things to us or around us that would undermine our relationship.  He doesn’t humiliate us by bumming cigarettes or by yelling at strangers in the street. He follows our direction. The experience of his disability never included the horror of watching one’s teenage son, sibling, or twin snatched away, transmuted by disease into a delusional stranger. Vincent also doesn’t frighten us. He’s always been wonderful with our two children.

    Ilene Wells made one comment that struck close to home. She noted that she was nervous to drive with her brother. I suspect that fear is widespread among other caregivers. Most of us have little reason to think about it, but driving is a routine period of physical vulnerability, when erratic behavior can have deadly consequences. Liza Long notorious (and problematic) essay “I am Adam Lanza’s Mother” described somewhat analogous fears. In one scary experience, Long’s mentally-ill son threatened to jump out of a moving car if he didn’t get his way.

    Maybe six years ago, I was driving Vincent and my kids along a winding portion of Lakeshore Drive. We were cranky for reasons I’ve now forgotten. One of my daughters was being too loud in the back seat. I spoke to her a bit too sharply, and she began to cry. Vincent adores her. He’s such a sweet, empathetic man. It’s hard for him to process strong emotion. Out of the blue, he smacked me across the face. It hurt, and it scared the daylights out of me as I navigated the narrow lanes near the north beach exit. I slapped the back of his hand—also harder than I’ve ever handled him. I pulled off the road. He was crying. It was pouring, too.

    Then… the storm cleared. We apologized to each other and calmed down. We promised that we would never raise an unkind hand to each other. Nothing remotely like that ever happened again. Not that I knew that at the time. I distinctly remember thinking: “I don’t know how much longer I can really do this.”

    Public policies to support the intellectually disabled are, on the whole, more generous and more successful than those serving individuals with SMI. Deinstitutionalization of the intellectually disabled must be considered a real triumph of American social policy.

    Since 2008, states and localities have imposed painful cuts on mental health services. Intellectual disability services have been cut too—maybe for the first time. But cuts to mental health services are deeper, to a more politically marginal constituency. Many Americans ask about the impact of such cuts on patients requiring mental health services. People also increasingly ask–again quite rightly–about the potential impact of such cuts for the broader society and for public safety.

    We don’t think quite as often about the impact of safety-net cuts and failures for entire families trying to keep a loved-one whole. We should.

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    • My father was on a committee to develop community health centers that would deal with the deinstitutionalized mental patients when deinstitutionalization was occurring. He commented that the mental health professionals in the community
      1) were not used to dealing with SMI, but with what he called, “the worried well” kids who were struggling with their parents’ divorce, etc.
      2) wanted the state and federal funds to expand their practices and reach out to more of the worried well to provide services for.
      3) didn’t really want to deal with people with SMI and had no experience doing so.

      Community members who were not used to SMI (because they’d all been locked up in the institutions) liked the idea of more help for the worried well and NIMBY’d the deinstitutionalized people with SMI.

    • Long’s mentally-ill son threatened to jump out of a moving car if he get didn’t his way.

      I have had this exact thing happen to me while I was caring for a mentally ill family member. Thankfully as long as they take their meds they are not a problem.

      Since 2008, states and localities have imposed painful cuts on mental health services. Intellectual disability services have been cut too—maybe for the first time. But cuts to mental health services are deeper, to a more politically marginal constituency.

      As he great James M. Buchanan taught us political decisions are very far from ideal. Mental heath is cut while rich old people collect SS, while subsidized state universities pay millions to football coaches in programs that lose money so that the University can attract a better class applicant increasing the prestige of the school.

      It seems to me for most things family, friends are who I rely on. If a person is violent and dangerous then you need the help of the state but the state does not even do a good job reducing violence which is their prime reason to exist.