Nine years ago, Claire Berman's mother, Rebecca Gallant, then 83, was diagnosed with Alzheimer's disease. Responsibility for her care fell partly to Berman, now 61, a New York City writer and mother of three. Like many adult children suddenly faced with caring for a seriously ill parent, she had no idea of what to do. "I couldn't work, "she says. "I stayed up at night crying—I had no knowledge. I just had fear." Though her sister Sybil Sigman and her brother Sam Gallant pitched in by spending time with Rebecca, "I felt the weight of managing Mom's illness," says Berman. "I did much of the planning, the research, the doctor visits."
As Berman discovered, she wasn't alone: Nearly one-fourth of American households—22.4 million families—are responsible for elderly relatives, and the number is growing significantly. While caregivers help their charges cope with memory loss and chronic disease, they themselves often face more subtle difficulties, including loneliness and stress. According to Berman, the problem is compounded by the fact that the task typically falls to one person—usually a woman—who may receive little help from others.
Galvanized by her own struggle, Berman interviewed geriatric specialists and dozens of children with dependent parents and produced a survival guide—Caring for Yourself While Caring for Your Aging Parents—published by Henry Holt in 1996.
"Caregiving isn't easy," says Berman, who relies on help from her husband, Noel, 65, an arbitrator. "But it's essential, and we have to find a way to do it well." She spoke in Manhattan with correspondent Nancy Matsumoto about stepping in when elderly parents need help.
How do you begin to organize care for a parent who seems to be deteriorating mentally or physically?
Get a good diagnosis, because there's so much misinformation among doctors. If someone tells you, "Of course, they're old, what do you expect?" go to another doctor. Once you know the problem, contact the organization that deals with your parent's illness. Your parent is depressed? Learn about depression. Forgetful? It isn't always senile dementia ...find out what's going on. Then get to your area agency on aging and find out what services are available that can help your parent and that can help you. Support groups for caregivers, for example, can be tremendously useful.
How can you identify your limits as a caregiver?
Every situation is different. Some children are comfortable moving in with the parent. Others take a sabbatical from work. I think people decide too quickly to bring their parents to live with them—they cut them off from everything that is familiar. You have to think very seriously about what that will do to your parent and how it will affect your life. Will you be your parent's only company? Or would you do better to visit more frequently, and get programs in place in your parent's community?
How do you know when a parent is ready for a nursing home?
The question is generally not "When is the parent ready?" It's "When is the caregiver ready?" There are children who can do round-the-clock care—changing diapers, bathing, turning someone over to avoid bedsores—and feel a religious commitment. Other people don't want to be mashing food. Many people reach their limit when the parent becomes incontinent. It comes back to deciding not what your neighbors will think of you, not what your relatives will think of you, but what will you think of you? And once you've made a responsible decision, live with it. That's caring for yourself, too.
What sort of emotional pitfalls did you encounter as a caregiver?
Guilt is a major problem—guilt that you're not doing enough, that you begin to see visits to your parent as an obligation. Guilt because you're healthy and can enjoy going out at night while your mother sits at home.
Anger, fear and frustration are also common. For myself, I was angry about the whole situation: Why, Mom, why me? Why did this dread disease have to hit us? I was afraid of it and worried that I might lose my ability to cope with her as the disease progressed. I feel frustrated when all the love and care can't make my mother better.
How do you cope with those feelings?
I think you acknowledge them, and then you move on. The problem is getting stuck: "I feel so guilty, I feel so terrible," that you're inactive as a result. I think it's freeing to know that you're going to feel guilty. If you find yourself snapping at a parent who asks you the same question for the tenth time in two minutes, then admit that you're frustrated. Say, "I'm sorry, I shouldn't have spoken to you that way. I've really had it."
What happens if a caregiver doesn't tend to his or her own emotional and physical needs?
If you become so keenly attuned to your parent that you lose sight of your own life, you become depressed, distressed and drained of energy. You can't be good to your parent, your spouse, your kids or your employer. You lose your ability to function.
How is your mother now?
Her memory worries her, and she is always asking, "Isn't there something I should be doing?" She still lives by herself and has a home-care attendant seven days a week to help with cooking, bathing and dressing. She's also in a daycare program for people with dementia, where they do exercises, have discussion groups, health checks, even fashion shows.
Where can caregivers who are feeling overwhelmed find practical help and emotional support?
Eldercare Locator, a nationwide service administered by the National Association of Area Agencies on Aging (800-677-1116), helps people find programs for home-delivered meals, transportation and housing options. They can also provide assistance with finding recreation and social activities, adult daycare, senior citizens centers and nursing homes.
The National Academy of Elder Law Attorneys (520-881-4005) can refer you to someone who can help with insurance and deciding what to do about an elderly person's finances. Also there is the National Family Caregivers Association (301-942-6430), which maintains a support network.
What are the rewards of caring for an elderly parent?
It's frustrating, but there are opportunities in caregiving for moments of humor, warmth and love—you've got to grab them. My mother and I are closer than we ever were. In caring for her, I've come to respect her, because she is handling herself with enormous dignity. She says, "My memory, Claire, can we do anything about my memory?" And I say, "No, Mama, we can't.... It's terrible, it must be awful." I don't negate her feelings of loss of self—it is a tragedy. But I say, "We'll help you, Mom, we'll try to keep you safe. Come on, let's go out to lunch."
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