Why It’s Critical to Develop a Backup Family Caregiving Plan

Creating a plan that is flexible

For Cheri Lynch, 2024 brought changes in the routine she’s had caring for her father, Ralph Peavey, 84, who was diagnosed with dementia and then colon cancer in 2020.

“It took my aunt and two brothers and myself to keep him home,” she says.

As the oldest of three and the only daughter, Lynch, 62, says she’s been trying to create a backup caregiving plan “and realized I’m way over my head.”

Her dad was her mother’s caregiver for 15 years as she fought three types of cancer before she died in 2012.

“Every plan that you have, you have to be fluid,” Lynch says, explaining that her father first moved into her home in 2020. When that didn’t work out, she converted the garage and part of the laundry room into his space, where he moved the following year.

Her two younger brothers each live about 30 minutes from the Franklin, Massachusetts, home Lynch shares with her husband and one of her three adult children.

“I’m trying to come up with a plan that doesn’t take me down with my dad’s health,” says Lynch, who has had skin cancer, Lyme disease, insomnia, shoulder issues, PTSD and an irregular heartbeat.

Although she’s been unable to work for four years because of her caregiving, just this year Lynch has gotten some help because of her health. One of her brothers started driving in on Sundays to give her a few hours’ break. And she has some part-time help for her father’s laundry, showering and attending doctor visits.

Ralph Peavey's mug is lovingly imprinted with family photos.

Tony Luong

Pressure, strain affect caregivers’ health

A 2023 AARP report found that caregiving takes a toll on both the caregiver’s mental health and physical health, with reports of increased levels of depression, anxiety and stress as well as physical issues. Other reports find increased heart disease and higher levels of mortality associated with caregiving. Newer research on those age 50 and older provides further insight.

A review published in the journal Geriatric Nursing in 2021 found that “caregivers place their health and well-being at risk” and "experience a time burden that prevents proper engagement in self-care practices that support physical and psychological health.”

Authors of a systematic review of studies of self-care interventions for caregivers published in January in BMC Geriatrics say it is “important for caregivers to have more awareness of their health status and engage in health-promoting self-care behavior, especially physical activity, stress management, social support, and support resources.” And research published in March in Supportive Care in Cancer shows that caregivers for terminal cancer patients found “decreasing physical health was evident among caregivers who were initially healthier.”

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.”