June 19, 2000 -- Whatever Barbara Levinson did or didn't do for her elderly mother, she felt guilty. First, her mother, Marion, fell and broke her hip. Then she had intestinal surgery. Finally, she was diagnosed with lung cancer. Juggling her mother's needs with the demands of a newborn baby, Barbara joined her sister, Lynn Kanter-Levy, in caring for their mother before she died. But while Lynn accepted her own limitations, Barbara could not.
"My sister says we did enough and in reality we probably did. But I think, well, I could have let Mother stay at my house more often," says Levinson. "Maybe that would have made me feel I was doing everything possible. But at the time -- after 14 years of infertility and eight miscarriages -- I just wanted to be with my newborn son. It all seemed overwhelming."
Everyone Feels Inadequate
Levinson has plenty of company in trying to balance love, caregiving, and guilt. Some 52 million Americans care for a disabled or sick family member, according to a 1999 survey conducted by the U.S. Department of Health and Human Services. And although most bear their burden with love, social workers say caregiving is so demanding that most people feel inadequate.
Beware of guilt, experts warn. Eventually, such emotions can extract a heavy toll on the health of the caregiver -- and that hurts everyone involved.
Of all the emotional hurdles family caregivers face -- including anger and resentment -- guilt is the most pervasive, says Mimi Goodrich, a licensed clinical social worker at the Wellness Center in San Mateo, Calif. "It's right up there on the list," she says. "The caregivers feel it's their obligation to make these years the happiest. But none of us has that power. When caregivers have expectations that are unrealistic, that's when the guilt comes in."
The Superwoman Syndrome
To make matters worse, people caring for a sick parent often find it difficult to ask for help or parcel out tasks to friends or professionals. As with Levinson, the voice of the responsible child whispers in our minds: "She raised me. I should take care of her now, no matter how hard it is."
"People feel guilt because they think that somehow there's something they could, might, should, would have done," says Lee L. Pollak, director of the Bereavement Center at Jewish Family and Children's Services in San Francisco. "But the perfect ending never happens, no matter how well prepared a family is."
Pollak says America's goal-oriented, independent-minded society works indirectly to boost feelings of guilt. "We think we ought to be able to control things. So there's an extra layer of guilt if it doesn't go the way we want or expect."
Caregivers need to cut themselves some slack, experts say, or their own health may suffer. Researchers at Indiana University, for instance, recently surveyed 3,000 women. They found that the longer women cared for a sick relative, the more likely they were to suffer depression, insomnia, and even physical difficulties climbing stairs or lifting heavy objects. The study was published in the March, 2000 issue of the Journal of Health and Social Behavior.
What can caregivers do to protect both themselves and their loved ones?
Most importantly, turn to community programs and professional resources for help, as well as to family or friends. "Guilt is driven, in part, by the lack of access to information, especially during a crisis," says Pat Coleman, an elder-care consultant and founder of the web site Eldergift.com. "It's brought on by trying to get through the morass of needs and decisions and not knowing what supports and services are available. Often there hasn't been anyone there to tell us what we might need until we actually need it, so there's tremendous guilt in feeling we haven't done enough."
Consider also joining a support group -- either in person or on the Internet -- so you can share feelings and frustrations with others who understand your situation. And make sure to acknowledge your limits; you can say "no" without closing your heart.
Some caregivers let go of their old life, and learn that their new life, though difficult, is still full of rewards. Others let go of control, and learn to delegate caregiving chores to others. No matter which choice you make, Pat Coleman offers this advice: "Remember that your best is good enough."
It's taken Barbara Levinson the three years since her mother died to truly learn that lesson. Her baby son is now a rambunctious preschooler. She knows he needed time with her. "If I had done things for my mother that made the rest of my life not make sense, maybe then I would have been doing enough for her," Levinson says, "but I wouldn't have been doing enough for my child -- or for me."