The Family Caregiver

Until recently, 91-year-old Eleanor Wheeler lived alone in her apartment near North Branford. But a year and a half ago, her daughter Debbie Allen began to notice unusual behavior — forgetfulness, repetition, household items left in bizarre places. Allen moved her mother into an assisted living facility, but in the past few weeks her worsening dementia has required more intense care. Allen, who's 60, must find a way to balance her husband's needs — they migrate to Florida every winter for his health — and meet the increasing demands of her mother's condition. The struggle has taken a toll on her health, leading to depression, weight gain and insomnia.

Nearly all caregivers find their multiple obligations a source of stress. In a review of studies, the AARP found that 40 to 70 percent of family members caring for older adults showed signs of depression. Caregivers often neglect their own health, which, combined with chronically high stress, puts them at higher risk of hypertension, stroke, sleep problems and heart disease. What drains one caregiver may be manageable for another: Some struggle with the physical toll of lifting or dealing with incontinence; others with dementia patients' aggression, restlessness, or forgetful episodes. They may experience social isolation if they pull away from family or friends, or lack time to enjoy their own activities.

Researchers talk about "loss of the relationship" — when a wife, for example, spends all her energy caring for her husband, she has lost the ability to lean on him in tense times. And this may be the most difficult problem of all.

Mary Hammond, 99, gave birth to 13 children and has already outlived two of them. She lived on her own until nine years ago, when her daughter found her unconscious on the kitchen floor as smoke from the stove filled the room. Now she lives with her 60-year-old daughter, also named Mary Hammond, and her grandsons Ricardo and Xavier take her on frequent walks around the neighborhood. Except for some arthritis, she's in fairly good health.

For many families with an aging loved one to care for, one of the most difficult decisions is where to provide care. Most seniors prefer to stay in their own homes — so called aging in place — but that's not always safe, as in Hammond's case. One option is to move in with a family member. Others may choose from a variety of institutional settings, from continuing care retirement communities to assisted living to nursing homes. But many families can't pay the national average of $40,000 a year for assisted living, and up to $75,000 for a semiprivate nursing home room. Few families have planned for long-term care; many don't realize that Medicare won't cover it. Medicaid will — but it forces seniors to spend their assets to poverty level before they qualify.

In addition to the cost, moving a loved one to an institution can bring different stresses — worries about the quality of care and guilt about passing the hands-on burden to others. With the over-85 population set to quadruple in the next 40 years, it's no wonder that gerontologists are urging policymakers to devise plans and families to set aside resources for the long road ahead.

Bonnie Reid Grodt moved her mother, Jean Reid, into the first-floor bedroom of her Londonderry, N.H., house five years ago. Calling herself a member of the "sandwich generation," Reid Grodt, 55, juggles her roles as a caregiver, a wife and a mother to two daughters, 10 and 12. She found herself the default caregiver when her old mother, now 92, could no longer live alone. Reid Grodt worries about what comes next. It is an uneasy truce, workable until her mother's health deteriorates — but no one knows whether or when that will happen, or how quickly.

For reasons of tradition, comfort and convenience, family caregiving is usually women's work. Nearly two-thirds of caregivers are female, usually wives and daughters. But studies show that the financial burdens of caregiving hit women disproportionately hard; on average they earn less than men, according to a MetLife study. and are more likely to take unpaid time off or quit their jobs to care for a loved one. When they do, they have less ability to finance their own retirements or long-term care. Women are also more likely to be among the 20 million caregivers who are caring for young children as well as parents. That puts them in the difficult position of making care choices with constrained resources — time, money, expertise and attention.

Silvia Ortiz spends her days ensuring that her mother has eaten properly and that her father has taken a walk. Ortiz lives in Houston's Greater Fifth Ward, down the street from her parents, Maria Guadalupe Perez, 68, and Gregorio Perez, 67. Her mother has diabetes, arthritis and depression; her father has had knee surgery and heart problems. Ortiz, who's 41, has held a paying job for just three years, choosing instead to focus on her children — now all attending or graduated from college — and her parents.

Though she is relatively young for the role, Ortiz is hardly alone. Estimates of the number of caregivers in America vary widely, but AARP has calculated that at any point in time 42.1 million Americans provide care for an adult with "limitations in daily activities." That care can include anything from driving and paying bills to helping someone out of bed or to the bathroom. Caregivers can be children, spouses, siblings or even close friends, but the "average" caregiver is a 49-year-old woman who spends nearly 20 hours per week caring for her mother, a task that continues for nearly five years.

Using the average wage for home health aides, AARP calculates that Americans provide $450 billion in unpaid caregiving each year, almost as much as total annual Medicare spending. Unlike Ortiz, most caregivers shoulder their responsibility with virtually no help from professionals. Yet in a 2007 Johns Hopkins University study, almost two-thirds of family caregivers said that the experience "makes me feel useful" or "enables me to appreciate life more." They make up a vast and growing labor force with unclear rules and onerous expenses, sustained mostly by the rewards of knowing a loved one is in good hands.

Nancy Craig worked as a nurse for 35 years, but now finds herself nursing her husband. Henry Craig, who's 80, had a kidney transplant last year and also has diabetes, so he needs help with medication, meals and even walking around. The Craigs' three children help when they can, but, at 78, Nancy is the primary caregiver. Her family worries about her stamina, and hopes to find a way to ease the strain.

Modern medicine has placed greater burdens than ever on family caregivers. Patients are more likely to be discharged quickly from the hospital and to suffer from chronic diseases that are managed at home. Unlike Nancy Craig, most caregivers aren't trained to administer drugs or change bandages. Nor do most know how to cope with dementia and depression, both common in the older population.

Researchers are investigating interventions that help caregivers manage these stresses and keep their loved ones at home. For example, some seniors spend several days a week at adult day centers, so that caregivers can go to work or rest. Steve Zarit, professor of human development at Penn State University, says such programs have been found to decrease care-related stress, lowering depression and anger. The federal government has set aside $160 million for the National Family Caregiver Support program, which helps caregivers find counseling or respite care. But resources are scarce, and the use of such services is surprisingly low. One study found that only 5 percent of end-of-life caregivers had turned to respite care. Many caregivers think for that they can handle the responsibility alone or simply don't know where to go for help.