The madness of it all

At the mental health home where I work, patients are pushed to be as independent as possible. But it's just as vital for them to feel connected.

By Fred Redekop

Read more: Mental Illness, Psychiatry, Life

May 7, 2006 | Roddy* has a rolling gait and a salty tongue. He's only 50 but looks much older, the result of double rations of grog in his youth that have left his face stained red and his body trembling. He is full of strange medical complaints that no doctor has witnessed or can locate in a medical journal -- "I've got tingly needles in my bowels!" "My ears are packed with static!" "My toes have gone all magnetic!"

Roddy lives at Elm Avenue, a community mental health center in the Northeast, where I have served as director for the past two years. It has a big, open kitchen, nice carpets, overstuffed leather recliners, and friendly staffers who take residents on outings and help them cook and do laundry. I tell my friends that if I were severely mentally ill, I wouldn't mind living at Elm Avenue, and it's true. It's not perfect, but as an alternative to living in a sprawling state psychiatric hospital or underneath a bridge, it's not bad either.

Roddy's been diagnosed with schizoaffective disorder. Last week, a new staffer came to me and said, wide-eyed, "I can't understand Roddy at all. He's making no sense." One's first brush with full-fledged psychotic speech, delivered forcefully by a man with a foghorn voice, delivers a bracing shock. You might as well be listening to the waves, for as much as you understand.

Not that you're not trying. Your brain is working overtime trying to decipher the meaning. Give up. You are a little rowboat trying to catch a sleek sloop disappearing over the horizon -- Roddy is hull up, hull down, gone. I told the new staffer what I tell everyone and try to remember myself: Don't try to understand his words when he's like this. Instead, pretend he's singing and listen to his music. "Roddy, are you sad? Are you scared? Are you tired?" Is he sad and scared? Of course he is. He's been waylaid by pirates, lashed to the mainmast, and the best we "helping professionals" can offer is flailing semaphore -- "Roddy, are you OK?"

Roddy illustrates the psychiatric conundrum known as "His pills don't work." Instead of Zyprexa and Depakote, Roddy might as well be taking Pez and Pop-Tarts. My 8-year-old daughter could prescribe as well as Roddy's psychiatrist, who pretends that treating his illness is just a matter of tweaking this and titrating that. The debate about psychiatric medications is a complex one, but it can be condensed to a few simple truths:

Some people are greatly helped by taking meds

Some people are somewhat helped

For an unfortunate minority, meds don't work at all

Roddy belongs in the last category. He's tried every typical and atypical antipsychotic, every mood stabilizer, every anti-convulsant, every antidepressant and anti-anxiety drug; he's been prescribed on label and off label, in every combination and dose possible. Nothing helps. Despite the latest research, therapies and pills, Roddy is still adrift.

He's a nice man. When staffers are out sick, he asks about them with great concern. He takes delight in remembering people's birthdays, he wishes people cheery good mornings and good nights, and after he calls someone an obscene name during what he refers to as his "fits," he is downcast and abashed. "You know I didn't mean it, Pammy," he says to a staffer, a sweet young woman who cares for Roddy like a mother. Of course she does.

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Starting in the 1960s and continuing through the 1970s and 1980s, a nationwide movement began to "de-institutionalize" severely mentally ill people. Spurred by growing public awareness of the dreadful conditions in big state mental asylums and the advent of antipsychotic drugs, the doors of the hospitals swung open.

The theory was that people could be put on effective medication regimens and followed by outpatient psychiatrists and clinicians in community mental health centers. The reality, however, was disastrous. Some patients were able to live independently or with family members, but many could not. Because of insufficient funds for outreach programs and follow-up, a lack of leadership from the medical community, and inadequate structure and support, many former state hospital patients relapsed. Now, decades later, despite new drugs and the work of advocacy groups such as the National Alliance for the Mentally Ill, the situation is now only marginally better. A large number of mentally ill people remain untreated, homeless and without services (it is estimated that one-third of the total number of homeless suffer from severe mental illness, usually schizophrenia). Some have ended up in jail (16 to 24 percent of prisoners suffer from psychotic disorders, severe depression or bipolar disorder). Some have been re-institutionalized. Others stay in the community, going into inpatient psychiatric units during acute episodes and being released when they stabilize. And some eventually end up in residential programs like Elm Avenue.

Prior to coming to Elm Avenue, I'd earned a Ph.D. in counseling and worked as an in-home family therapist and in a community mental health center, but didn't know about 24-hour mental health residential programs. At Elm Avenue we have four residents and serve as a base for four outreach clients who live in their own apartments in the community. Our mandate is to help people live as independently as possible, people who are not quite ill enough to be in a psychiatric facility, and not well enough to be completely on their own. What is "ill enough"? What is "well enough"? Welcome to Elm Avenue.

Next page: People say, "Oh, you are so noble to do this work." What they really mean is, "Jesus, what fools you are"