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.
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:
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.
Ideally, a residential program is a kind of “milieu therapy,” meaning that every interaction, no matter how small, becomes an opportunity for a therapeutic encounter. Trust me — I’ve learned the risks of turning everything into a metaphor. One day, a year or so after I arrived at Elm Avenue, I hurt a resident’s feelings when I suggested that his reaching into a pickle jar with his fingers instead of using a fork represented his lack of respect for his peers. “I was in a hurry, Fred,” he said. “I just like pickles.” I was reminded of Freud and Jung staring at each other, neither wanting to make a move lest it be “interpreted” by the other. I wasn’t altogether wrong — the man did bully the other residents — but for heaven’s sake, who wants to feel like he can’t make a move without having it analyzed? Sometimes a man is just in a hurry to eat a pickle.
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Brian is paranoid. “You’ve been stealing my hats again, Fred!”
“No, Brian, I haven’t been stealing your hats.”
He looks at me, uncertain. What’s he supposed to do when he’s been told, repeatedly, that he can’t trust his own judgment — and then the very person who’s told him this now tells him something he doesn’t believe? Brian says nothing, but his look clearly says, “Wait. I’m supposed to trust you now?”
It’s not an enviable situation. On the one hand, Brian doesn’t want to believe I’ve been stealing his hats. On the other, would I tell him if I had been? Not likely. It’s like that old, twisted chestnut: Just because you’re paranoid doesn’t mean that people aren’t really out to get you. No wonder anxiety, fear, and anger are Brian’s default emotional states.
And there is also the problem of the Big Pig in the Sky. Is he there? Not there? There but as a benign, not menacing, figure? This paranoid fear, of the Big Pig, of the FBI, of the weatherman on the local news, is, I think, related to the biggest fear we all share, of a hooded figure on the horizon, idly lopping off daffodils with his scythe and pointing to a draining hourglass. Brian’s problem may be that he’s right even when he’s wrong: Aren’t we are all pursued by nameless dread every second of our lives?
But all I can offer him is the usual Buddha-ish, New Age claptrap. Be present. Observe. Don’t judge. Breathe, creature of the earth, breathe. “Let us, Brian, together, calmly, mindfully, observe the Big Pig in the Sky.”
“You making fun of me?”
So I don’t quite put it that way. But I do say something like this: “I think you’re upset and angry. When you’re feeling this way, you don’t enjoy your day. I want you to enjoy your day. Would you do something with me to help you enjoy your day?” And Brian, who is a fighter, nods. We go outside, and I ask him if he feels comfortable looking up at the sky. Warily, he does so. “The Pig up there?” “She’s usually out at night, hiding on the dark side of the moon.” “So, what about that cloud, doesn’t it look like Florida?” “I guess.” “What about that one?” “Cape Cod, or a fish hook. Maybe an elf boot.”
The sky clears and we try to describe the color. After trying out a lot of blue things, we still haven’t found it. Brian says, “We’re stupid. It’s the color of the sky,” and we both laugh. We are stupid. The sky is blue as the sky, and the Pig in the Sky holds a rose in her lips.
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Sheila is in her 20s, partially paralyzed and subject to seizures, overweight, diabetic and delusional. But to her, all those words don’t matter. It’s a case of mistaken identity. Unbeknownst to me and her mother and her case manager and the actress herself, Sheila is Angelina Jolie.
Despite her handicaps, Sheila gets up in the morning and goes to a clubhouse program where she socializes and receives educational and vocational counseling, and where she answers the phone and runs the cash register during lunch. She gets on with her life. She’s brought more than one hardened professional to tears with her willingness to struggle on crutches through her day, to take outings to the mall when it would be so much easier to sit and watch TV. When her speech slurs while ordering out for pizza, she gets frustrated and tries to hand the phone over to a staffer, who gently pushes it back toward her. But she doesn’t thrash anybody with her crutches. She takes a deep breath and tries again. If she believes she’s carrying Brad’s baby, well, maybe that’s part of how she carries on at all.
On Tuesdays and Thursdays, Sheila faithfully accompanies me to the Y. Roddy and Brian brag about the days, long ago, when they curled and bench-pressed tons, but when it comes to getting in the van and going, they become preoccupied with prior appointments and obligations. For Sheila, just getting in and out of the van is an effort, but after I set up her walker, she charges into the lobby of the Y, scattering patrons on either side. She is unable to work her lower body, but she does a complete round of exercises on the upper body Nautilus machines. Watching her, I am impressed but worried, hoping she doesn’t suffer a seizure. Afterward she waits patiently while I jog on the treadmill. She looks up occasionally and I update her on the time left (15 minutes… 10… 5…) and in the van we exchange high fives.
Back at the house, I tell her our trip to the Y is the highlight of my week, and it’s not a lie. Not that it’s her job to make me happy or to make my job enjoyable, but Sheila’s got a right to know that she, no one else, made someone’s day simply by being who she is. Could Angelina say any more?
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As one of my colleagues says, “Dealing with clients is easy — dealing with disgruntled workers is hard.” They are disgruntled: They earn 20 grand for an intense, high-pressure little-recognized job. “Oh, you are so noble to do the work you do,” is what people say. What they really mean is, “Jesus, what fools you are.”
You have to be stubborn, willfully blind to the fact that you might be looking at retirement when you’re in your 80s with zilch in savings. You have to believe that it’s God’s work, even if you doubt that he or she exists or gives a damn. You have to be willing to get down and dirty, to be a soldier in the trenches where everybody — clients, doctors, case managers, concerned family members — can take potshots at you. Once you’re prepared to be in your 40s and still renting, to work in a residence that’s nicer than your place, with clients who get more in disability income than you get in take-home, well, step into my office and fill out an application.
At Elm Avenue, our task is to help people be as independent as possible, but in the politicized effort to get state funding and answer to taxpayers, that mission is often translated into a need to demonstrate “movement” toward independence, even if we’re not sure it’s in the resident’s best interest. The people at the Department of Mental Health, the folks who pay our salaries, are decent, smart people who understand that real life is messy and that it can be difficult to know when someone is ready to move on, to go from a staffed residence (more expensive) to an unstaffed apartment (less expensive). But, inevitably, they feel pressured to lower costs, to provide services as cheaply as possible — and that in turn becomes a pressure we feel.
I think it is important for people to be independent, but it is just as vital for them to be connected. One of the big problems with mental illness is that it isolates people and impairs their ability to form and keep relationships. Take James. First he was an inpatient at a mental hospital, then he lived at Elm Avenue, and now he’s in his own apartment. He’s a success. Independent. Proud of it, too. “Ah,” Joe Taxpayer says, “Nuff said. Game over! Bootstraps and so on! Give the man a job!” But the reality is more complicated.
James doesn’t go to a clubhouse program, despite all our encouragement. Neighbors and acquaintances steal money and cigarettes from him and victimize him sexually. He’s often scared, bored and anxious. He’s more independent than he used to be, but he’s also much lonelier. He comes to Elm Avenue so often that he might as well still be living there. Like an unsuccessfully launched 20-something, he keeps coming back home. I can understand why. Elm Avenue is a clean, well-appointed place with hot meals. Cable. Conversations, playing cards and board games.
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Zeke, another outreach client, is severely bipolar and will never have a job, will never get married, never get his GED. And sadly, those are all things he talks about wanting. But whenever we try to help him achieve them, he balks. We try baby steps, we write up treatment plan after treatment plan. Nothing. Zeke’s not being manipulative; he’s trying to tell us something. I think that, like James, he’s telling us what he thinks he should want. Maybe he does dream of a job, a wife and an education. But until he can change, it makes him unhappy to confront the fact that he doesn’t have them.
When it comes to creating independent lives, Zeke and James have been at best only partially successful. But aren’t there other ways of judging a person, of recognizing the meaningful roles they can fill? Despite the wreckage left by a life spent soaring and crashing, Zeke has managed to stay connected to others. He’s a friend. He attends group therapy with some of the other clients and is genuinely helpful in those sessions, admitting his own failings and challenging his friends when they don’t admit theirs. And he’s a storyteller. When he’s in a manic episode, Zeke can talk your ear off. Like a fiction writer, he renames people and places, makes houses fly, becomes the hero of the larger life he deserves.
Anne is a teacher. She’s been diagnosed with borderline personality disorder (BPD), meaning that she is chronically flooded with rage, fear, anxiety, self-loathing, loneliness. Anne can go from 0 to 60 in seconds. One moment you’re having a normal conversation; the next minute she’s screaming at you. You are the best of the best; you are the worst of the worst. Come here. Go away. Help me. Hurt me. I hate you. I will die without you.
BPD is the simplest and most complex of mental illnesses. Put plainly, Anne needs to learn how to breathe. She needs to learn how to calm herself, soothe herself, distract herself. She needs to commit herself to dialectical behavior therapy, a special treatment that will teach her the skills she needs to survive; if she can grab on to it, it will be the ladder out of the hellhole she inhabits.
The problem is that she’s only 5 to 10 percent committed to her life (“I want to die, Fred,” she says). How can she commit to therapy without being committed to living? How can you become committed without becoming committed to becoming committed? How to avoid this infinite regress? Especially if you doubt things can improve. Anne doesn’t believe things can get better; her life is one long, seemingly conclusive lesson that things are bad and anything she does will only make them worse. She tries to draw people to her and succeeds in driving them away. She tries to make people understand, but when that fails all she can do is to scream and curse. She finds relief in doing something dreadful: cutting herself.
I’ve learned more from Anne about human behavior than I did in my doctoral program, I tell new staffers. Ignore at your own peril the lessons she teaches. Pay attention. Study hard. Be ready for pop quizzes. What classes does she teach? Intro to Your Faults and Vulnerability: A Survey of Personality Theory for the Human Service Provider. I tell staffers to guard themselves. I tell them that they need to identify their softest parts, the weakest, most immature parts of themselves, because Anne will find them. Like one of those infrared images that show hot and cold spots, Anne immediately knows where your blood is the warmest, where to stick the knife. Anne isn’t bad. Her problem is that she’s a Nietzschean character, beyond good and evil. She is trying to become who she is but, within ordinary human parameters, simply can’t.
Don’t pretend to know all the answers, never say, “I understand what you’re going through,” I tell the staff. And Anne teaches us that the lesson for others is the lesson for ourselves. “OK, Mr. Big Shot,” she asks me each day, “What do you know?” “Quite a bit, actually.” “Correct.” “And?” “Nothing,” I say, “I know nothing.” “Also correct,” she nods.
*Patients’ names and identifying characteristics have been changed.