‘We Thought Within a Year, She Would Be Gone.’ When Mom’s Care Costs Over $1 Million.

Caregiving costs are rising as people live longer and their needs increase.

Violet Carson married her high-school sweetheart in a small North Carolina town and raised two children in a three-bedroom ranch.

When her husband died a decade ago, her children expected their mom, then 78, to follow soon after. She had Parkinson’s disease, Lewy body dementia and required 24/7 care.

“Never in my wildest dreams did I think she would last until she was 88,” says her daughter, Teresa Wyche. Violet died last July.

The Carson family spent more than $1.3 million taking care of Violet at her home over the last decade. Fortunately, she and her husband had saved, and the family could cover the cost of round-the-clock in-home care without going into debt.

Many people aren’t as well positioned.

The median net worth of people 75 and older is $254,800, according to the Federal Reserve, which is about the same amount that it would take to cover an estimated cost of nearly 14 months of 24/7 in-home care. Caregiving is becoming more expensive as people are living longer—those 85 to 99 are among the fastest-growing age segments—and have more complicated medical needs.

The median cost of a home health aide increased 12.5% between 2020 and 2021, according to Genworth, a long-term-care insurance company. Only one in five adults between the ages of 50 and 80 is “very confident” that they would afford to pay for in-home help, according to a 2022 poll conducted by NORC, at the University of Chicago, a nonpartisan research organization.

To help prepare, families are advised by personal finance advisers to implement the widely used 40/70 rule: By the time an adult child is 40 and the parents are 70, they should talk about a parent’s financial situation, insurance and long-term care wishes.

Paying for in-home care is one challenge, but finding reliable and consistent in-home care in an industry with roughly 65% turnover is another.

This system is “difficult to coordinate and it is getting worse,” says Jason Resendez, president of the National Alliance for Caregiving. About 31% of family caregivers had trouble coordinating care for their loved ones in 2020, up from 23% in 2015, according to research from the National Alliance for Caregiving and AARP.

One way the Carsons avoided the turnover was by paying higher wages. Payroll was the Carson family’s biggest expense, averaging more than $130,000 annually in the last five years of Violet’s life and peaking at $148,000 in 2020 with overtime costs related to the pandemic, according to family records. There were other costs, totaling more than $50,000, and not covered by Medicare, including a special handicapped-accessible van that cost about $40,000 and $20,000 for a special tub.

“It was worth every penny,” says son Steve Carson, 68, who lives in Salisbury, N.C.

‘We had promised Dad we would do everything in our power to make sure Mom was able to live out her life in her own home,’ says Steve Carson, pictured here with his mom, Violet, and sister Teresa Wyche. PHOTO: TERESA JOHNSON

Violet lived in a small community of Moravian Falls, N.C., where wages and cost of living are lower, so the $1.3 million is probably less than what it would cost elsewhere, but it was more than Wyche, Violet’s daughter, ever expected.

“If you would have asked me if I thought we would spend $1 million, I would have said, ‘No way,’” says Wyche, 61, who lived close to her parents.

Like many other families, the Carsons were hit unexpectedly with the need to provide 24/7 care for their mom.

Their dad, James Carson, spent his career at Lowe’s, the home-improvement chain. Their mom worked at a local dime store behind the nut counter and as a telephone operator. Steve Carson, their older child, describes his dad as “fastidious” about saving, retaining his company stock that was part of his profit-sharing and living off the dividends. They never had long-term-care insurance.

After James Carson retired and their mom was diagnosed with Parkinson’s, their dad hired Teresa Johnson, who lived next door, first to help clean and then to provide care as Violet’s condition deteriorated. A bond formed. The two would share a Dr Pepper and cheese crackers and talk about their families, health and church. They shopped, put on silly hats, played Monopoly, and did exercise to Michael Jackson.

“She became more like a daughter to Mom and had so much empathy for her,” says Steve Carson.

Violet Carson with Teresa Johnson, a next-door neighbor, who managed Violet’s in-home care for a decade. PHOTO: TERESA JOHNSON

When James Carson died in 2013 of a heart attack following a back surgery, the Carson children were so convinced that their mom would die soon after that they paid for two funerals and two caskets.

“We thought within a year, she would be gone,” says Wyche. “She depended on my dad for everything.”

The siblings had promised their dad they would do everything they could to keep their mom at home and asked Johnson to work full time as a caregiver. They put her on salary, offered paid vacation and gave her a generous Christmas bonus. Johnson’s pay exceeded the $47,188 median household income for Moravian Falls.

Johnson interviewed and managed hourly workers, ending up with a small but reliable network, including her sister, who had worked at another senior-care facility, and a sister-in-law.

Hourly workers were paid about $16 an hour, and received a Christmas bonus of between $250 and $1,000 depending on tenure and their responsibilities, and birthday bonuses of $50 to $75.

Copyright © The Wall Street Journal 2023 . All rights reserved.