Why I’m Glad My Bipolar Dad Was Institutionalized
For years, my family fought to keep my father out of institutionalized living. We never dreamed it would turn around his mental health.
"You father is all set to be released tomorrow," the social worker said, her voice cheery, as if this were good news.
My stomach dropped.
My father was about to be released from his third hospitalization in five months. A decade earlier, he'd had an episode from which he never fully recovered. He had been diagnosed with bipolar disorder in his early 20s, but managed to maintain stability for years. In 2008, at 44 years old, he became manic. Then he crashed into a deep depression that never loosened its icy grip. That episode, which happened when I was 18, rendered my dad unable to work or live alone. When my parents' marriage ended three years later, he moved in with his mother, spending the days sleeping in the sun in a bay window and the nights shuffling about, locked in his own internal hell.
My father's bipolar cycles, with hospitalizations at least once a year, somehow became normal for our family. However, the winter before the social worker's call—the eighth year in this cycle—was particularly brutal. In January, I brought him to the hospital for manic symptoms. We spent 12 long hours in the emergency room before he secured a bed in a psychiatric hospital. As he was restrained on a stretcher for transport, I prayed for the best. But when he got to the psychiatric hospital, the staff immediately recognized that his symptoms were not related to his being bipolar—he was showing signs of a stroke. Unbeknownst to me, he was transferred to the neurological department at a third hospital. I awakened to a call from the doctor in the middle of the night, seeking information about this confusing patient.
My family spent the three months that followed trying to understand what was causing my father's health crisis. The neurologists treated the effects of his stroke with physical therapy and meds, but didn't coordinate with his psychiatrist. He was temporarily sent to a nursing home, where his mental state declined further. After two weeks there, he was finally sent home, only to wind up back in the ER a few weeks later after he was found delirious and barely responsive, the cause of which—a suicide attempt, psychosis, neurological damage—we were never able to determine. He was brought back to the emergency room and stayed for three days while I fought to get the doctors to admit him to a psych ward, where I believed he needed to be.
Ultimately, the three-week psych stay we won for him had done wonders for his health. Which was why the social worker was calling to arrange his discharge.
"He just can't come home," my grandmother told me over the phone, her voice both resigned and heartbroken.
She was right. She had her own health and age-related issues, and it was no longer practical or safe for my father to live with her.
And yet, as I heard those words, I was overcome with nausea. I sat in the May sunshine outside my New Hampshire home, pulling on new blades of grass, focusing on the small physical details of the lawn as I tried to maintain my composure. I lived out of state with an infant, and was unable to take my father in for both practical reasons (he would lose his Massachusetts state-sponsored medical insurance) and personal ones (I couldn't care for an ill father and an infant at once). My three siblings, all in their teens and early 20s, were just starting their lives—living abroad, launching a business, and going to college. None of us were equipped to handle our father's needs.
In that moment, my biggest worry—that my father was going to die—was replaced with a new, more pressing concern: Where would he live if he survived?
A half-century ago, my father would have likely ended up a long-term resident of a state hospital for the insane. Although many of those institutions were regal on the outside, with their gothic architecture and rolling green lawns, inside was another story. Patients were often restrained and experimented on without consent, and the hospitals were woefully overcrowded and under-funded.
By the 1960s, steps were being taken to move away from the state hospital system and to deinstitutionalize care for the mentally ill. This was driven largely by two events: the 1955 introduction of Thorazine, the first successful antipsychotic drug, which stabilized many patients enough that life outside the walls of a hospital could be considered; and a 1965 federal law that prohibited the newly established Medicaid from paying for patients in state psychiatric hospitals. Policymakers hoped patients would reintegrate into society, but offered no real solution for how this would happen. In response, hospitals closed in droves, with 70 percent shuttering by 1990.
By the 1990s, most states had a deinstitutionalization rate of over 95 percent: For every 100 state residents who were in public psychiatric hospitals in 1955, fewer than five were still in care. Today there are about 14 state psychiatric beds per 100,000 Americans, the same rate as in the 1850s.
Although at first glance this seemed like a victory, deinstitutionalization left a massive gap in the care for the mentally ill. In the absence of other options, treatment for patients fell to prison systems and nursing homes, which are ill-equipped to handle the medical complexities of mental illness. Today, the number of seriously ill patients in prisons is three times that of those in hospitals, and more than 40 percent of people with mental illness will be caught up in the criminal justice system at some point.
Although nursing homes are a better option than prisons, they often compound depression and anxiety in mentally ill patients. Nonetheless, they're regularly used for care. A 2010 study found that people with severe mental illness are likely to come into nursing homes younger (more than half of nursing home admissions with bipolar disorder or schizophrenia are under the age of 64), and stay longer than patients without mental illness.
My father was just 52 when he entered a nursing home, in the aftermath of his stroke. He was physically stable, but still psychologically fragile, and although no one would say it, the doctors were afraid of what would happen if he was left alone. It was only a two-week stay, but the resulting sharp decline in his mental state was horrific to see. He wouldn't get out of bed for his children, or even his grandchild. I knew, without exaggeration, that if he remained in that nursing home longer than the bare minimum, he would slip into oblivion.
Several months later, at the end of my father's psych-ward stay, the social worker called about my father's release. It wasn't unexpected; he had been improving during the weeks spent in the ward. But despite my research efforts, I couldn't find an acceptable place to house him. He was not newly sober, so he didn't qualify for halfway-house programs. Wait lists for low-income housing are absurdly long, and would not provide the level of medical oversight that he needed. We had already seen that the nursing home would not help his mental state.
"He's homeless," I told the social worker. The words were bitter, and I felt that I had failed my father. He was now among the one third of homeless Americans with a serious mental illness. Yet I hoped that the designation might flag him for additional services.
"We don't like to release people to the shelter, but we have before," she replied. In Massachusetts, where my father lives, a 2006 study found that 27 percent of discharges from state mental hospitals were homeless within six months. In other states with lower access to mental health care, the rate is even higher.
But, the social worker let slip, there was one option: a so-called rest home, one of only two group homes in all of Massachusetts, she said, for people with stable but chronic mental illness.
"It's nearly impossible to get in, but I can see," she told me.
Twenty-seven percent of discharges from state mental hospitals are homeless within six months.
My father has now been living at the rest home for nearly a year. This has been his longest stretch without a hospitalization in nearly a decade. It's not a coincidence.
"I feel like it's home here now," he recently told me.
The best way to describe the rest home is as a dorm for adults with mental illness. Being in Massachusetts, most of the residents pay for care through state health insurance, as well as through disability payments. There are two floors, with common rooms for watching television and shared bathrooms where the staff can assist with shaving and other needs. In the small dining room, meals are offered three times a day, and staff members distribute psychiatric medications and coordinate doctor's appointments. Residents can come and go as they please, giving them a much-needed sense of independence.
The home is by no means glamorous. My father calls me often to complain that they're having sandwiches for dinner, or that another resident is dominating the television remote. However, for my father and our family, it has been transformational.
"I feel great," he now says when I ask how he is. The fact that he calls me after years of being too depressed to pick up the phone, even on holidays, is amazing. He goes for walks, and writes, and even has a girlfriend, another resident at the home. I no longer need to worry about whether he is going off his meds, and when I lie awake at night, my mind doesn't wander to what he might do if left alone. My grandmother did not, and could not, supervise him constantly, nor could she take responsibility for his medications. However, in the group home, he has an extensive network built to do just that. If I am worried about his health, I can call and speak to the staff.
Now he goes for walks, and writes, and even has a girlfriend, another resident at the home.
It's no secret that stable, accessible housing improves outcomes for the mentally ill. In 1990, New York City initiated the New York/New York Agreement to House the Homeless Mentally Ill, a program that offered permanent supported housing and communal living options to formerly homeless people with mental illness. Studies of the program found that participants were less likely to be hospitalized, had shorter stays if they were hospitalized, and were less likely to be incarcerated. A UPenn study found that the program cost an additional $995 in public funding per person annually, compared to providing no housing. But in the long term, the program saved thousands in emergency care and incarceration costs.
Other programs have shown similar benefits, but they are woefully scarce. In fact, the nonprofit National Alliance on Mental Illness (NAMI) says that lack of access to safe and affordable housing is one of the most powerful barriers to recovery from mental illness. NAMI calls for a range of housing options, from supervised group housing like my father's, where staff is on site 24/7, to partially supervised group housing and supported housing, where people live mostly on their own but are visited by support staff when needed.
There has been some progress. Section 811, a Federal Department of Housing and Urban Development (HUD) program, aims to provide supportive housing for people with disabilities, including mental illness. The program was expanded in 2012, but is still far from meeting demand. In 2011, HUD joined forces with the Department of Health and Human Services to launch a three-year program, the Housing Capacity Building Initiative for Community Living, which targets people with chronic illnesses who are at risk for being institutionalized. However, the impact of the program on housing for the mental illness remains to be seen.
As a journalist, my job is to get to the bottom of convoluted and confusing situations. But during my family's crisis, I was unable to find any housing solutions on my own. That speaks to the fact that while there are individual solutions scattered throughout the country there is no well-organized security net to meet the massive gaps left by deinstitutionalization.
For now, that means too many people with mental illness will find themselves in jail, in a nursing facility, or on the streets—anywhere but home. And too few families will have access to the second chance that mine has found.
"Institutionalization" remains a dirty word; something everyone with mentally ill loved ones strives to help them avoid. Yet each time we pull up to my father's residence, a large brick building in a residential neighborhood, my toddler yells "Papa's house!" And when my father walks out with a smile on his face and his granddaughter leaps into his arms, I know I am experiencing something that would not have been possible without it.