The Crisis in Home Care

ILLUSTRATION BY DANIELLE CHENETTE

by Monica Potts

Kara Ward started her life as a caregiver earlier than most people do. She was only 29 when her mother was diagnosed with brain cancer in 2006. Ward had two young children of her own at the time—a toddler and an infant—and still she found herself caring for her mom, whose cognitive abilities declined almost as soon as she was diagnosed.

Ward is the older of two children, and lived about an hour from her parents, in Fredericksburg, Virginia. Her younger brother was just out of college, “and just not capable, I think, of handling it emotionally or physically,” she told me. I asked Ward if she had felt capable. “I didn’t have a choice, so yes. I think if I looked back, I would say, ‘God, no, nobody’s really capable of that.’ But when you don’t have a choice, it’s amazing what you can do.” Her mother died within five months.

These days, Ward cares for her grandmother, now 94, who lives a few minutes away from her in Charlottesville, in her own apartment. Ward is lucky in many ways—she has a good job, as an assistant director of marketing at the University of Virginia McIntire School of Commerce, disposable income, a supportive family, and a home health care aide who comes occasionally to assist with the physical care her grandmother needs, helping her get around and take her medicines. Ward is able to pay for this help by pooling her own resources with those of her grandmother and her father, and by relying on supplemental private insurance plans. Still, it’s expensive. The family hires its own health care providers; relying entirely on an agency, Ward said, would cost more than $200,000 a year. Of course, many Americans are far worse off than Ward. But even for those able to pay for professional assistance, caregiving takes a toll on emotional and mental health, as they watch a loved one slip away.

Ward serves as a life manager for her grandmother, hiring the aides who come, making sure all of her appointments are scheduled and attended, the bills paid, the prescriptions filled, the groceries purchased, and everything big and small is attended to. The pandemic made this work much harder. Not only did her family face the challenges of working from home and going to school remotely, but several of her grandmother’s home health aides were reassigned or took positions in nursing homes and hospitals to help with the fallout from the pandemic, and Ward struggled to find consistent care providers from a dwindling pool of potential employees. If she finds herself with a spare minute, it’s soon filled with the worry that she’s forgotten something she needs to do for one of the people in her life for whom she’s responsible. Often, the last person on that list is herself.

“Maybe just a couple of years ago, I realized that I had to make some changes,” she said. “My fear was this is going to kill me.”  (Click to Continue)

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The Crisis in Home Care