The Crisis in Home Care

The demographics of caregivers skew female, but otherwise nearly match the demographics of the country: 61 percent are white, 14 percent are Black, 17 percent are Latino, and 5 percent are Asian American. Many still maintain full-time jobs even as the caregiver role takes up much of their time. I spoke to four care-givers, all of whom were still working, and all of whom could afford some level of assistance, either through insurance programs, such as Medicare and Medicaid, or through their household budgets. They all acknowledged that they had fewer challenges than families who could not afford to hire home health aides and agreed that the wages of the home health workers should be higher in general, which would help both the workers and the families who rely on them.

But their experience also points to the need for some kind of financial support for caregivers. Denise Brown, the founder of the Caregiving Years Training Academy, an online research and training program for caregivers, said a program like a universal basic income might assist caregivers, and Ward mentioned flex work, allowing women to have more flexibility in where and when they work. They all thought that the issues adult caregivers face were overlooked, perhaps because the subject touches on our mortality, a topic that affects everyone but that no one is eager to experience. Discussing how we age means concentrating on one of the most difficult and fraught periods of our lives: the end. “Nobody wants to talk about dying, and nobody wants to talk about getting sick,” said Maureen Rafa, who cares for a dependent sister. “Except only the lucky 10 percent or so of the population that just die in their sleep or have a sudden heart attack, the rest of us die inch by inch.”

The broader crisis in elderly care also exposes a more fundamental problem in this country. The United States focuses its resources, its social safety net, and its policies on people who are in the workforce. From health care to the school system to our retirement programs, we identify people as current workers, future workers, and past workers. Americans tend to put less value on labor done outside of a paid job, the everyday work of feeding, clothing, entertaining, and loving others and ourselves. This is the work that caregivers do, as age prevents their loved ones from doing those critical tasks on their own, and it is fundamental to a functioning society and to a sense of community. Everyone I spoke to wanted the United States to find ways to value that—not just as labor, but as an important part of life.

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