My Family Cared for My Sick Aunt. Who’s Caring for Us?

My Family Cared for My Sick Aunt. Who’s Caring for Us?

When I was 12, my mother’s 32-year-old sister Emily experienced a berry-aneurysm rupture, which caused a stroke. One day she had a headache that she said felt like being hit with a two-by-four. She went on with life, and then collapsed the next week.

The executive assistant whose fingers typed so fast that they blurred like the spokes of a bicycle wheel found her clenched right hand no longer at her command. She could not swallow without choking and had trouble focusing her eyes. When she found words, her brain garbled them. She could hum, and we sang with her. But she could no longer care for her young daughter. My family rallied to help her. Through intense rehab, she learned — and we learned — how she could perch on a bedpan, transfer from bed to chair and walk a short distance with a brace that locked her knee into place.

We were fortunate in many ways. While the nearly one in five Americans who care for dependent adults provide medical and nursing tasks for which they may have little or no training, my mother and her sisters had worked in hospitals, and their experience helped them ask the right questions. After Aunt Emily was released from her rehab center, my grandmother, divorced and in her 50s, retired early from her job as a garment worker to care for her at home.

Soon our family took on an urban village configuration. Emily’s childless twin sister, Evelyn, moved in to support the new household, including my 90-year-old great-grandfather and Emily’s daughter, my 6-year-old cousin, Dana. They pooled their Social Security checks — my great-grandfather’s from his years as a building superintendent in New York City, my grandmother’s from her short work life after divorcing her Never-Mind-the-Seventh-Commandment minister husband, Aunt Emily’s disability payments.

Working as a secretary by day, Aunt Evelyn took college courses at night to increase her earning power. After graduation, she got a teaching job at a community college in Wilmington, Del., where she moved the household. Friends visited, my mother drove down from Philadelphia weekly; we all did our best. But my grandmother’s life shrank. “Sit down here,” she’d say when we came, “and tell me what’s going on in the outside world.”

Shut away from work that generates money and social capital, caregivers like my aunt and grandmother make up a barely visible secret society. AARP’s Public Policy Institute has estimated the annual economic value of unpaid caregiving at $470 billion. If you paid everyone for a year’s worth of caring for loved ones — cooking, washing, transporting, giving pills and shots and rubs, taping together torn oxygen tubes, changing adult diapers, bringing wanderers back home, reading to those who can’t anymore and whose minds beg for the refreshment of new ideas, tucking the pain-ridden into bed at night and prying them out in the morning — it would use up almost all the revenue of Walmart worldwide.

Naturally, people have looked for ways to turn that work into money. A handful of states offer some form of limited paid leave to workers to care for a family member, but for the rest of the country, the Family and Medical Leave Act, which applies only to immediate family members, allows for up to 12 work weeks of unpaid leave. Like my grandmother, the more than 40 million Americans who are working as family caregivers often have no choice but to lose income — more than $300,000 on average in lifetime wages and benefits for people over 50 who leave work to reorganize their lives around a loved one’s disability.

As nursing home costs rise, insurance companies and legislators have approved funding for modifications that let older people stay at home longer, such as chair rails, braces, walkers, oxygen tanks, potty chairs and my favorite, the flyweight 19-pound wheelchair. But our mental, emotional and spiritual needs are just as difficult to manage as we age, harder to expense and easier to ignore. Governments have created programs to get “helping hands” and “angels” into the homes of older people, but navigating the confusing national map of options is overwhelming, and millions who may be eligible for services cannot figure out how to benefit from them.

Because we do not prioritize psychological well-being, we don’t ask how keeping the elderly and disabled in good spirits could make us a stronger, better, happier country. Instead, we ask home care workers to provide, often for little more than minimum wage, very subtle, tailored companionship — call it care or friendship or even love. With longer life expectancies, the need for caregiving in later life is increasing. How we update care systems will affect not only this often hidden sector of American life but also our national debt, and, if we had one, our Gross National Happiness Index.

Aunt Emily outlived her caretaker mother and even her twin sister. She spent her last years in a nursing home, where her daughter, who would later become a geriatric nurse practitioner, visited her most evenings. Having been an active, though paralyzed, member of her household for half her life, Aunt Emily thought nothing of maneuvering her chair near the nurses’ station to listen in on gossip and participate in their daily conversation.

When we visited, that’s often where we’d find her, raising her one mobile eyebrow to indicate that some drama was afoot and she knew the dirt! Her body was disabled, but thanks to the variety of devoted care she received, her life, though limited, retained its meaning.

Lorene Cary is the author of “Ladysitting: My Year With Nana at the End of Her Century.”

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