By Kathi Wolfe
For more than 25 years, Ned and Nancy Schaefer have worried about one of their sons, who suffers from schizophrenia.
When their friends sent their children off to college, the Washington couple struggled to find a diagnosis and treatment for their son, who began showing symptoms of the disease in his late adolescence. While other parents celebrated at their children's weddings, the Schaefers took their son to psychiatrists and tried to get him to take the medication needed to treat his mental illness.
And while their friends enjoyed retirement, the Schaefers watched over their son and wondered: who will take care of him when we are no longer able to? He "isn't like my other children," Nancy Schaefer says. "He'll always be sick and need care."
Schaefer, 71, and her 74-year-old husband have learned to relinquish the dreams they once had for their 44-year-old son, a talented artist. For years, he had lived a nomadic existence -- holding a series of menial jobs, fighting alcoholism, going in and out of jail, and being admitted to and then expelled from group homes. After a long struggle, their son began receiving treatment. He is now a patient at a Maryland psychiatric hospital.
The Schaefers say their son is slowly showing signs of progress. He is sober and taking medication for his schizophrenia, a disease that is generally manifested through hallucinations, delusions and social withdrawal. But the Schaefers also realize they won't always be around to watch out for him, so they've provided for his care after their death.
They still worry about what life will be like for him when they die. Could he end up on the streets?
The Schaefers are not alone. Their worries are shared by a growing number of elderly parents caring for adult children who have schizophrenia, bipolar disorder (also called manic depression) and other severe mental illnesses.
A generation ago, mentally ill people were almost invisible -- many of them living out their lives in psychiatric hospitals. But in response to terrible conditions and civil liberties violations in those facilities, mental institutions began closing in the early 1970s. At that time, there were 337,619 mentally ill people living in state psychiatric hospitals. By 1992, only 101,000 of the mentally ill were institutionalized.
The money saved by closing the institutions was to have been redirected to outpatient psychiatric care, group homes and other services to mentally ill people in the community, says Laura Young, vice president of community services of the National Mental Health Association. Yet all too often these services weren't provided, she says, leaving many of the mentally ill without treatment. Often families were left to care for these patients.
Mental health advocates say there still aren't enough group homes or other supervised living situations and other mental health services for the mentally ill. They say that one-third of mentally ill people are homeless and others are estranged from their loved ones. About 40 percent live with their families or in housing provided and supervised by family members.
Barry D. Lebowitz, chief of adult and geriatric treatment and preventive interventions at the National Institute of Mental Health, says, "As a result of improvements in care to those with serious and persistent mental illness, these individuals ... now live into old age." But, he says, "most remain disabled. Some profoundly so. These individuals require a great deal of care."
Caring for mentally ill children is often devastating to families, says Carolyn Harwood, 76, who lives with her husband Jerry, 78, in a retirement community in Gaithersburg. Their daughter, now 44 and living in a group home in the District, was diagnosed with schizophrenia at age 16.
"She heard voices," Carolyn Harwood recalls. "The voices urged her to do terrible things. She picked up one of the dining room chairs and threw it at me. She'd wander the neighborhood at 2 in the morning."
The Harwoods cared for her at home until she was 32. But then the strain became too much. "When there's a mentally ill person in the family," Carolyn Harwood says, "the whole family gets sick."
The hope for the families of mentally ill people, Jerry Harwood says, "is that a mentally ill person can lead some kind of independent life and that their parents won't be overburdened by the care."
But this hope can't be fulfilled unless parents plan ahead for the future care of their mentally ill children, especially the tricky details of what happens when the parents are incapacitated or dead, warns Agnes Hatfield, a founder of the National Alliance for the Mentally Ill (NAMI). Many parents don't make those preparations.
"Some are anxious about the future of their mentally ill relative," Hatfield says. "This ... interferes with planning .... Others don't know how to go about it."
Gregory Smith, an associate professor of human development at the University of Maryland, added that many factors may keep parents from making other arrangements for their children. "Though difficult, caregiving can give meaning to the life of a parent," he says. "Some parents find it hard to face their own aging and mortality, [And] there's a dearth of options for residential placements."
The prohibitive cost of mental health care, advocates say, can also be daunting for parents thinking about the future. Inpatient care at a state hospital can run at a minimum $30,000, according to Clarke Ross, deputy executive director for public policy at NAMI. Other mental health experts say the figure can be three or four times that high. But most mentally ill patients don't stay in a hospital that long. Even so, outpatient treatment is very expensive. It costs about $25,000 a year to provide services, such as housing, transportation and psychiatric rehabilitation, and the medications for a mentally ill patient living in the community, he adds. Some mentally ill people are eligible for Medicaid or Medicare, but negotiating these programs can be difficult.
Parents often think other children will take care of their mentally ill child if they become incapacitated or die, Hatfield says. But, she adds, "this often isn't the case. Some siblings don't want to get involved. Others can't assume this responsibility because they live in a different state."
The Schaefers pay Planned Lifetime Assistance Network of Maryland-DC (PLAN) to monitor treatment and coordinate social services for their son and to manage the disability benefits he receives from Social Security.
PLAN charges a $100 annual membership fee and then families pay $65 an hour for services, according to officials. It doesn't accept payment through Medicaid, Medicare or private insurance.
When the Schaefers die, PLAN will continue to provide these services for their son. The parents have set up a trust fund to provide for his needs after their death.
Last September, the Maryland affiliate of NAMI began a three-year series of workshops to help parents overcome their fears of dealing with these issues and begin planning for the future. The effort, one of only a few in the country to address this issue, is funded by the Maryland Mental Hygiene Administration.
"We talk to parents about community mental health services and what they should do to prepare their mentally ill child for the fact that they won't always be there," Hatfield says.
Planning for the care of adult mentally ill children is difficult, Hatfield says. "It involves talking with your mentally ill child, with his or her siblings and with mental health service providers," she explains. "You need to know how to provide for the financial needs of your mentally ill relative -- who usually won't be able to manage money."
Ken Steele, 51, who was diagnosed with schizophrenia when he was 14 years old, applauds this effort. With the help of medications (Risperdal) and therapy, he lives independently in a New York City apartment. Steele, who publishes New York City Voices: A Consumer Journal for Mental Health Advocacy, says, "Consumers with mental illness watch their parents become old and frail. They're terrified about who will care for them when their parents aren't there. They're afraid they might get stuck in a nursing home or land on the streets."
Resources
First published in the Washington Post, October 28, 1999. Reprinted with kind permission.
Please sign up below for important news about the work of The Carter Center and special event invitations.
