Who Cares.

Author:Gedye, Grace
Position:Long-term care for elderly parents


For Alexis Baden-Mayer, who lives with and cares for her two elderly parents, the audiobook of Marcel Proust's six-volume novel, In Search of Lost Time, has two distinct benefits. First, it provides 150 hours of literary distraction. Second, it features a character who jokes about excrement.

"Play it in the car as you drive your loved-ones to doctors appointments," she wrote in a blog post about her caregiving experience. "Play it each morning as you strip soiled linens from the mattresses, make beds and fold laundry. Play it, as I have, to try to calm and distract yourself as you bark commands to your dementia-addled mother to wipe her butt and drop the toilet paper in the toilet."

Baden-Mayer, a freckled forty-five-year-old, put her house on Airbnb three years ago and moved with her husband and two kids into her parents' home in Alexandria, Virginia. Her mom, who has Alzheimer's disease, was no longer able to take care of her dad, who had suffered from heart failure. "I didn't really have a good idea of what I was getting into, quite honestly," she said, reflecting on what a truly frank conversation with her husband would have sounded like: "What do you think of living with my parents for about ten years while their health declines and they die?"

When I went to visit one morning in May, her day had started at five a.m. Hair still wet from her shower, she steered her mother through a morning routine. She told her where to put her hands to wash herself, then placed her mom's feet through the leg holes of her adult diaper. Without Baden-Mayer's kind but firm instructions, her mother would start staring into space, seemingly happy but unsure of where to go next. More than once, when her mother was smiling at me, perplexed, Baden-Mayer explained my presence. ("She's a journalist. She's working on a story about family caregiving.") The long dining room table was a laundry-folding assembly line, piled with six people's clothes.

Baden-Mayer is one of about thirty-four million Americans providing unpaid care to an older adult, often a family member. Most of these caregivers are middle-aged, and most are women. They are individually bearing most of the burden of one of America's most pressing societal challenges: how to care for a population of frail elders that is ballooning in size.

Most people assume that Medicare will cover the type of long-term personal care older people often need; it does not. Neither does standard private health insurance. And the average Social Security check can only make a medium-sized dent in the cost of this care, which can easily exceed $100,000 a year if provided in a nursing home. Medicaid, unlike Medicare, does cover long-term care, but only for patients who have exhausted their savings, and coverage, which varies from state to state, can be extremely limited. So the safety net you thought would catch you in old age is less like a net and more like a staircase you get pushed down, bumping along until you've impoverished yourself enough to hit Medicaid at the bottom.

Private long-term care insurance exists, but it's the designer bikini of insurance: too expensive, skimpy coverage. Since people tend to buy it only when they know they'll soon be making a claim, there are never enough healthy people paying into the plans to keep them affordable. Insurance companies have realized this and jacked up premiums--or stopped selling policies altogether.

Meanwhile, the cost of hiring a home health aide to take care of a frail parent can add up to $50,000 or more per year. So tens of millions of individual women across the United States wind up providing the care themselves for free, and bearing its cost in the...

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