Imagining a Better Way to Grow Old in America

Imagining a Better Way to Grow Old in America

Illustration by Hanna Barczyk.

Brandon Will had a life plan: go to grad school for creative writing in New York City and eventually get a job in publishing. But then his mother, Janice, came to visit. She had lost a “startling” amount of weight, he said. At 62, she wanted to take cabs for short distances. He noticed a stiffness in her facial muscles that made it difficult for her to express emotion. “I’d be taking selfies and she couldn’t smile,” he recalled.

Within a year she would be diagnosed with Parkinson’s disease. “It got real serious real quick,” Will said. He decided to sublet his room in New York and move home to Detroit for three months. “I thought we’d get her back to where she’d been before the spiral happened.” It’s now been five years, and Will still lives with her, monitoring her meals, doling out her medications, and helping her get around the house without falling.

Will said his family was “very blue collar.” His father was an electrician, and his mother paused her freelance writing career to be a stay-at-home parent. “We had always been kind of broke, but my parents did a great job working with so little,” he said. There were no college funds, but there was always food on the table and money for book fairs. In retirement, Janice lives on a modest 401(k) account and receives a portion of Brandon’s father’s pension. A few years ago, a doctor wrote Janice a prescription for home health care, and an aide came to assess her. He outlined a care plan, but Medicare refused to cover it. Medicaid might, but Janice’s modest income makes her ineligible for it.

One way or another, long-term care is likely to touch all of our lives. Those with incomes low enough to qualify for Medicaid can get coverage for nursing home stays or, for a lucky few, care inside their homes, and an even smaller number can afford private long-term care insurance. Outside of that, there is no system for helping us afford the care we need if we are fortunate enough to live long lives.

“Our country has never had a long-term care system,” said Ai-jen Poo, director of the advocacy organization Caring Across Generations. When the United States implemented programs like Medicare and Medicaid, life expectancy was far shorter and support for aging wasn’t on the agenda. The issue hasn’t garnered much political attention since then. Americans don’t like to think about death, aging, or disabilities. “We’ve been youth-focused and ability-focused,” said Sarah Szanton, director of the Center for Innovative Care in Aging at the Johns Hopkins School of Nursing. “We have so much ableism, and we have viewed [aging] traditionally as a private matter.”

Today, the United States has a tattered state-by-state patchwork instead of a comprehensive social safety net. “We call it the nonsystem of long-term care,” said Susan Reinhard, senior vice president and director at the AARP Public Policy Institute. Most people assume that Medicare will cover long-term care, but it doesn’t automatically pay for even short-term assisted living or nursing home stays. In rare cases it will cover short-term in-home care from a certified aide. Medicaid covers nursing homes and, in some states, will sometimes cover home care, but many only qualify after they have spent down their assets—often by paying out of pocket for costly nursing home stays.

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