Why It’s Critical to Have a Backup Family Caregiving Plan (2024)

Looking at the big picture

Mary Andersen, 71, of Tucson, Arizona, has lupus and no caregiving help for husband Lars. At 75, he has diabetes and has experienced some cognitive decline, but she says he’s still able to play piano and organ at twice-weekly church services. But he’s fallen a few times, she says, and weighs 350 pounds.“He’s 6-4. I’m 5-3,” Andersen says. “I started thinking what if I need a caregiver? How are we going to afford this? We thought we could stay in our house that’s fully paid for and ADA accessible. We make too much for Medicaid..”

She’s consulted with an elder lawyer and a financial planner, which also has been costly.

“I had not thought about the caregiver plan. I was looking at the money first,” Andersen says. “I’m hoping to get ahead of it, but I have not.”

Elder lawyers assess the big picture — from the financials to legal documents and possible scenarios to prepare families, says attorney Judy Flynn, vice president of the National Academy of Elder Law Attorneys, based in Vienna, Virginia.

“One bad fall and you’ll be no good to your husband or wife,” says Flynn, of Quincy, Massachusetts. “It’s not just who will provide the care, but how do we make this sustainable. That way, if something falls through with the primary caregiver, other sources are in place.”

Hiring help (which many do) is costly, even though some is covered because the recipients are on Medicare or Medicaid, are veterans or have other coverage.

Still, Randi Kaplan, director of the Caregiver Support Center at Montefiore Medical Center in New York City, says “the system doesn’t care for people in between Medicaid and wealthy.” A licensed social worker, Kaplan says the Medicaid-funded Consumer-Directed Personal Assistance Program that allows certain family members to be paid for some caregiving tasks should be broadened to everyone instead of Medicaid-only.

In Del Rio, de Anda, who is divorced and has no children, pays out of pocket for a housekeeper and companion three hours a day to keep her father company, make him breakfast and help around the house since de Anda works full-time remotely. Her father was diagnosed with Alzheimer’s in 2019.

Her younger brother is single and lives in San Antonio, as she used to, about three hours by car. Their older brother is married and lives in Austin, an hour farther away.

“[The housekeeper’s] cleaning house, ironing and doing laundry allows me to care for dad in the evenings,” she says. “My brothers said, ‘You’re the one with the stay-at-home job.’”

But de Anda says a remote job “doesn’t mean it’s conducive for caregiving.”

Even caregiving experts such as Carol Levine, a senior fellow at the New York City-based nonprofit United Hospital Fund, understand it’s not easy to think about a backup plan for caregiving. She was the sole caregiver for her disabled husband for 17 years before he died.

“Yes, we made wills, but we didn’t think beyond that,” she says. “The more intense the caregiving, the more intense the plan has to be. I did have a kind of plan, but it was not really a good plan.”