The Coping Conundrum

The longer we live, the more important elder care becomes. But who looks after the caregivers?

By Nancy Gibbs Monday, Oct. 25, 2010
    • Illustration by Gerard Dubois for TIME

    The life cycle is at once miraculous and cruel, launching us as soft, smooth, frail creatures, until we grow and harden, then curve back toward infancy, our final days spent once again being fed and bathed and gently tended. It's the stage just after infancy and just before infirmity that tests those of us in between. As parents we tolerate adolescent rebellion because we know it's a necessary stop on the road to responsible. But what about parental rebellion? As they age, our parents need constraints, but the context shifts. Just as with teenagers, we put limits on their freedoms: No, you can't wear those heels, drive at night, explore that city alone. But this involves taking away freedoms they've had, not preparing them for new ones.

    Telling kids what to do comes naturally. Telling parents what to do takes more dexterity, like playing the flute in mittens. If teenagers are genetically ungrateful, our elders are understandably so, for the will to keep living large is fierce, and any attempt to shrink them to safety is a splash of mortality they naturally resent. Parents don't remember that they don't remember things—the pot on the stove, the bills not paid until the bank calls. Add to that the fear and confusion that a scourge like Alzheimer's brings, and the challenge to patience becomes epic.

    This is why caregiving is joining jobs, debt and national security as a political flash point, especially among women. As Maria Shriver's report A Woman's Nation Takes On Alzheimer's points out, nearly 10 million women either have Alzheimer's or are taking care of someone who does, and that number is expected to triple in the next 40 years. A third of the caregivers are responsible round the clock—and 4 in 10 say they had no choice about taking on the role. This often means no free weekends, not much exercise or entertainment or time off duty. It means switching from full-time to part-time work or turning down a promotion or, if you are Sandra Day O'Connor, stepping down from a Supreme Court seat because you need to care for your ailing husband.

    Alzheimer's is estimated to cost the U.S. $300 billion a year, or about $57,000 per patient; half of that is unpaid care provided by family and friends. Medicare does not cover basic long-term care, and you have to burn through your savings to qualify for Medicaid. The much maligned health care reform bill includes a voluntary long-term-care insurance program that will launch in January: employees can arrange for payroll deductions of their premiums and will be vested after five years. It's a start, but the benefit is only about $50 a day; the average room at a nursing home costs more than four times that.

    The causes of Alzheimer's may remain mysterious, but its effects on caregivers are not. According to the Family Caregiver Alliance, 30% to 40% of them suffer from depression. The Shriver report cites research showing Alzheimer's and dementia caregivers are more likely to have high levels of stress hormones, have reduced immune function and be at increased risk for hypertension and heart disease; 4 in 10 say it puts a strain on their marriage. Relationships are elastic only to a point. If you are a wife, mother and daughter or son, father and husband and all those ties are pulled taut, you are no longer a net. You are a sieve, and the first thing to slip through is peace of mind.

    So what would help? Underlying the strain is hope: we have this problem because people live longer, as modern medicine moves at a sprint. So we can press for progress, press for cures, which Nancy Reagan has championed. Meanwhile, we will have more people in their 70s caring for people in their 90s. Rosalynn Carter has made caregiver support her mission. She argues that both the stress and the costs can be reduced when communities offer families the resources to manage their responsibilities. Some forward-leaning companies employ geriatric-care managers who help workers grapple with family challenges—which has proved to benefit both the employee and the bottom line.

    It is long past time that this private conversation go public. Unlike our great, rollicking debate about parenting, the inverted question is harder; we raise kids, but we lower parents, however gently. There is guilt and mystery and anger and fear embedded in a process driven by love. As a society, we talk a great game about family values. If anything should be a postpartisan issue, this is it. Liberal or conservative, we all get old; we all care about the people we love; and in the years ahead, the support needs to come without being summoned if our families are going to stay strong.