Carol Levine is not the type of person most healthcare providers take precious time to welcome on their team in the rush to treat patients and discharge them.
That's precisely her point.
Although the number of people who fall under the umbrella of family caregiver -- wives, husbands, siblings, adult and even young children -- is by all estimates huge, their collective voice is quiet and small, but probably no one has single-handedly galvanized the fledgling family caregiver movement more than Levine, 71. "It's at that tipping point where you know it's true," she says about healthcare executives' awareness of the crucial role family caregivers play in the healthcare system, "but it hasn't made the next leap into the need to do something."
Levine, director of the Families and Health Care Project at the United Hospital Fund, a research and philanthropic organization focused on healthcare in New York City, brings a personal story to the issue of family caregiving that she does not sugarcoat, drape in platitudes, or paint with pathos; she has checked martyrdom at the door.
"I feel abandoned by a healthcare system that commits resources and rewards to rescuing the injured and ill but then consigns such patients and their families to the black hole of chronic `custodial' care," she wrote in a 1999 article in the New England Journal of Medicine. "I accept responsibility for my husband's care. Love and devotion are the most powerful motives, but there are legal and financial obligations as well. My income would be counted toward his eligibility for Medicaid, should we ever come to that."
A self-taught medical ethicist and widely admired writer and researcher, Levine in 1990 was executive director of the Citizens Commission on AIDS for New York City and Northern New Jersey, an internationally recognized private, independent citizens' group that was formed "to bring a rational civic response" to the AIDS crisis when the epidemic "was at the point of most hysteria," she says.
Her husband, Howard Levine, now 78 but 62 at the time, was the gregarious and engaging assistant vice president for public affairs at New York University. They had three grown children and a comfortable life, living in Greenwich Village with a weekend house upstate in Rhinebeck, N.Y., that Howard loved.
One icy day in January of that year, about 100 miles north of New York City outside Poughkeepsie, Howard was driving Carol to the airport where she was going to catch a flight to Minneapolis to speak at a conference about AIDS and the workplace. She was wearing a business suit. The car skidded, hit a guardrail, flipped over and slid down an embankment. They were both wearing seat belts. She escaped unhurt, but he sustained a traumatic brain injury that left him irreparably changed both physically and mentally.
"One of the odd things I always remember is ... I always felt I could handle that day because I was dressed for it," she says.
She might have handled the day in which she spent most of her energy working to get her husband immediately transferred to a New York hospital, but she was not prepared for the days, weeks, months and years that ensued. Howard hovered between life and death for weeks and lay in a coma for four months. A "disastrous reaction" to the blood thinner heparin during his first week of treatment required the amputation of his right forearm, she says. When he gradually emerged from the coma, she has written, "His thinking was chaotic. He had to relearn basic words and concepts. His moods alternated between rage and suicidal withdrawal."
Intensive care and countless operations were followed by six months of rehabilitation -- not a good experience, she says. "He was a difficult case." No one tried to be mean about it, Levine says, but she sensed resentment from nursing aides because she continued to work even though she also hired a companion to be with him. "They saw my role as making their job easier," she says.
"You know it's a blur, but I eventually got him home with care that the insurance company promised and then took away. I thought it would be fine because I was in charge, but I was just at my wits' end. I didn't know how to manage this."
Howard is basically a quadriplegic, his life confined to a bed and a wheelchair. He requires a skilled-nursing level of care. Carol hires unemployed actors to read to him and a two-man team of foreign-trained doctors waiting for licensing to care for him during the day while she works. Howard has neither the mental inclination nor the physical capability to easily leave the house, so the Levines never take vacations or travel. They only go out for an occasional lunch, and her nights and weekends are for the most part consumed doing household errands and managing his care.
In 2003, she required two hip-replacement surgeries six months apart in February and August, caused in large part by the stress of moving her husband and lifting him day in and day out. Her daughter came from California for a week after the first surgery, and her sister traveled from Montana for a week after the second. The surgeries sandwiched the death of her mother in June. Levine and her sister were their mother's long-distance caregivers for the year she was failing, managing her finances and home-care aides and visiting her in a small town in upstate New York as often as they could.
Levine says she doesn't sleep well because she's always listening. She is "it" as far as her husband's care is concerned. This past year they marked their 50th wedding anniversary without any celebration.