The Crushing Financial Burden of Aging at Home
Families face soaring costs and mounting pressures in taking care of their loved ones. ‘I never feel truly free.’
By Clare Ansberry and Anne Tergesen
Sept. 4, 2024 9:00 pm ET
Americans want to grow old in their own homes. But pursuing that dream has gotten harder, and is putting huge financial and emotional strains on families.
In Nebraska, Christine Salhany spends about $240,000 a year for 24-hour in-home care for her husband who has Alzheimer’s. In Illinois, Carolyn Brugioni’s dad exhausted his savings and took out a home-equity line-of-credit to pay for home healthcare.
Traci Lamb closed her business to take care of her mom in Florida. And in California, Cheryl Orr delayed retirement to help pay for care and home modifications for her wife, who has dementia.
Soaring costs of in-home care, medical advances that extend lives but require ongoing help, and the growing ranks of older baby boomers are creating new pressures. Spouses, adult children and siblings are putting their lives on hold to care for relatives, wrestling with sleep deprivation and constant worry. Families are draining savings to hire help, pay for medical care, and modify homes.
More than 11,000 people in the U.S. are turning 65 every day and the vast majority—77% of Americans age 50 and older according to an AARP survey—want to live as long as possible in their current home. At some point, many will need help. About one-fourth of those 65 and older will eventually require significant support and services for more than three years, according to the Center for Retirement Research at Boston College.
Even when loved ones need round-the-clock care for many years, families provide about half the care hours, says Anqi Chen, senior research economist at the center. “It’s a very large burden on them,” she says.
The cost of paid in-home care has soared in recent years. The 2023 national median cost of a home health aide, hired through an agency, stood at $33 an hour, up from $20 an hour in 2015, according to Genworth, a long-term-care insurance company. Those needing round-the-clock in-home care can expect a median cost of about $290,000, which is more than double the annual median cost of a private room in a nursing home facility and four times the annual median cost of a private room in assisted living, according to Genworth.
Many can’t afford that. About one-third of retirees don’t have resources to afford even a year of minimal care, according to the Boston College center. About 10% of adults 65 and older have long-term-care insurance, according to Genworth, which can cover some in-home care costs, depending on the policy.
“The new inheritance is not having enough money to give to kids but to have enough money to cover long-term care costs,” says Liz O’Donnell, the Boston-based founder of Working Daughter, an online community of caregivers.
Finding and keeping workers is a challenge. Many have left those jobs because of the physical and emotional demands and low wages. Median pay for home health and personal care aides is $16.12 an hour, according to the Bureau of Labor Statistics.
Yet demand for in-home care is high. Many families had bad experiences with long-term-care facilities during the pandemic when they were unable to visit loved ones. Some brought relatives home or resolved never to send them to nursing facilities.
“Postpandemic, people are trying to avoid institutions more than ever,” says Jonathan Gruber, an economist at MIT.
‘I never feel truly free’
Jimmy Salhany, a 77-year-old biophysicist and musician, was diagnosed with Alzheimer’s in 2017. His wife, Christine, a 66-year-old musician initially took care of him on her own in their Omaha home. But she needed help as his disease progressed; he became increasingly unable to bathe and dress. She went through a string of home-health workers, ultimately hiring and firing 27 since 2019, including one who, she says, fell asleep on the job.
She reached a low point during the pandemic when she told her home-care workers not to come because of Covid and had no help. “I couldn’t sleep. I couldn’t leave him,” says Christine.
She toured a memory facility that had a good reputation and an available room with a view of the garden. But on a visit before Jimmy was supposed to move in, she walked through a common area filled with people sitting at tables sleeping with their heads down or staring into space. She had images of Jimmy waking up in the middle of the night alone, confused and unattended.
“I couldn’t do it,” she says. “I am not ready to let go of Jimmy’s care and lower my standards.”
Christine now has a team of five people who provide care 24 hours a day in their home. She hires everyone personally, relying on recommendations from friends and her other workers, supervises her husband’s caregivers and handles payroll, taxes and time sheets, as well as his medical needs. When a worker leaves, she fills that shift until she hires a replacement.
“I have to be very vigilant. I never feel truly free,” says Christine.
That is a feeling expressed by many. Four in 10 family caregivers rarely or never feel relaxed, according to a 2023 AARP survey. Dementia care is among the most taxing, physically, financially and emotionally.
Still, Christine says, she is fortunate. They can afford the care and she has grown personally. “I have learned the value of service to others,” she says. “I will have no regrets. I feel like I’m doing the best for him.”
Leo Mordini was months away from depleting his savings when he died in June at age 96. A former marketing executive, the Grayslake, Ill., resident had always made ends meet on his Social Security benefit.
But three years ago after a hospitalization left him unable to walk, Mordini needed round-the-clock care and he was adamant about staying at home, said his daughter, Carolyn Brugioni, 59.
“Dad had phenomenal caregivers,” said Brugioni, of Lake Villa, Ill. “I knew his care wouldn’t be as good in a facility.”
With 24-hour care, Mordini’s costs ultimately ballooned to $13,000 a month, including his daily home-health-aide bills which rose from $225 in 2021 to $350 this year.
Brugioni used her father’s $350,000 savings to cover the gap between his expenses and his $4,000 in monthly income from Social Security, plus a Veterans Affairs benefit that he qualified for about a year ago.
Mordini lost several weekend caregivers to families willing to pay up to $450 a day. “We just couldn’t compete,” Brugioni said.
Earlier this year, with his savings nearly depleted, Mordini applied for a home equity line-of-credit on his $375,000 home. He tapped $85,000, the maximum he qualified for, and died with about $45,000 in the bank.
Carolyn Brugioni and her husband, Jeff, with her father Leo Mordini. Photo: Carolyn Brugioni
Brugioni said her father was mentally sharp until the end of his life and repeatedly asked her about his finances.
“My father wanted there to be something left when he passed,” she said. “I had to try to avoid the conversation. It would depress him…I always told him, ‘Dad, you’ll be able to live at home forever.’”
Before her father died, Brugioni and her husband decided to take a home equity line-of-credit on their own home in case Mordini ran out of money. The prospect of tapping into her paid-off house so close to her own retirement gave Brugioni sleepless nights, even though she planned to take a lien on her father’s home to recoup the money.
When Mordini died at home on June 13, Brugioni said she “felt a huge sense of relief and new-found freedom” at not having to worry about “what would happen if he runs out of money.”
Family members often provide in-home care themselves, because they can’t afford to pay others, can’t find caregivers they trust, or need to supplement paid care. Nearly one-third of caregivers have been providing care for five years or longer, up from one-fourth in 2015, according to a 2020 report by the AARP and National Alliance for Caregiving.
‘My life is on hold’
Five years ago, Traci Lamb, newly divorced and without children, moved in with her parents, intending to help her mom through knee-replacement surgery. “Then I was going to get my own place,” says Lamb. “Things happened.”
Her mom’s surgery left her in more pain. Her dad, who was obese, had congestive heart failure and chronic obstructive pulmonary disease, began falling repeatedly. Lamb had to leave her job so she could take them to the doctors, get groceries, cook and change her dad when he lost control of his bowels. He died in 2022.
She and her mom couldn’t manage rent on their home and lived with friends for a few months, before moving into a trailer. Her mom slept in the one bedroom and Lamb slept on an air mattress on the kitchen floor.
Barbara Lamb rests on her couch in her home in Lutz, Fla. She shares the home with her daughter, Traci Lamb, who helps with her medication. Behind Traci Lamb is a portrait of herself with her two siblings, who are deceased.
Tina Russell for WSJ (3)
Sitting at the one table in the trailer, Lamb, who worked in the hospice field, started a business to help caregivers, doing online webinars and appearing on local radio and TV shows. She earned enough money to rent a small house, which they moved into in 2023.
“She really wanted to be in a house,” says Lamb, 57, whose two siblings died earlier. Their dog, a Pomeranian named Oreo, can play in the backyard. Her mom is more comfortable and less anxious there.
“Home is the best. It’s more quiet,” says Barbara Lamb, 84.
Lamb’s business was growing. She produced shows for a streaming channel on in-home caregiving and was looking for sponsors.
Then in July, she announced on LinkedIn that she was closing her business. Her mom was recently diagnosed with Parkinson’s disease and dementia, says Lamb, who says she needed to devote her energy to her mom’s care, rather than finding sponsors for her business.
“I had to choose between my mom and my dream,” says Lamb. “My mom will always win.”
Traci Lamb, 57, left, becomes emotional when her mother, Barbara Lamb, 84, talks abut how grateful she is for her daughter to take care of her as she ages in their rented home in Florida. Photo: Tina Russell for WSJ
Lamb began working days remotely for a real-estate venture. In the evenings, she delivered DoorDash to get money for gas and groceries. “Honestly, my life is on hold. She is my priority,” says Lamb. Lamb recently got a marketing job for OdessaConnect, a senior-care company, where she can use her experience.
Delaying retirement
People prefer to remain in their homes, which gives them a greater sense of independence and keeps them connected to familiar surroundings and community, says Amy Goyer, a family and caregiving expert with AARP. But maintaining a house can be expensive. Housing costs, including mortgages and modifications such as walk-in showers, make up 52% of the out-of-pocket costs for in-home care, according to a 2021 AARP study.
“They think about medical costs. They don’t think of paying for the roof over their heads,” says Goyer, who ended up filing for bankruptcy protection after being financially drained by costs related to caring for her parents at home.
Cheryl Orr, 69, can’t afford to retire. Her wife, Joyce Penalver, 83, was diagnosed with Alzheimer’s two years ago. She can do most things on her own, but is falling more frequently. Both spent their careers at nonprofit organizations, Penalver as a mental- health therapist and Orr as a social worker, and don’t have a lot of retirement savings.
If Orr retires now, the couple, who live in the San Francisco Bay Area, would lose her more generous healthcare coverage and income, which they need to pay for care, bills and modifications in their two-story home. Orr pays $150 a month for an alert service to contact her at work if a sensor detects Penalver has fallen.
“I have good days,” says Penalver. “Other days my legs just won’t work.”
Joyce Penalver, (left) who has Alzheimer's, and her wife, Cheryl Orr in their California home. Orr is delaying retirement to help pay for care and home modifications for Penalver, who is beginning to fall more frequently.
Cayce Clifford for WSJ (2)
They wanted to convert their family room into a first-floor bedroom and install an accessible shower in the first-floor bathroom, because Penalver can’t manage the steps on her own. That would cost $60,000 to $80,000, which they can’t afford. Orr is looking into a chairlift but doesn’t know how she will pay for it.
A woman, recommended by a neighbor, comes three days a week from 11 a.m. to 2 p.m. to be with Penalver for a total weekly cost of $270. The couple pay her $30 an hour, well below a local agency rate of $50 an hour. The agency, like many home healthcare agencies, requires a minimum of four hours a day.
Their monthly bills, including mortgage and car payments, amount to between $4,000 and $5,000, according to Orr. Once she retires, their monthly household income will be about $5,000 consisting mainly of their Social Security. They both know Penalver will need more in-home care.
Orr runs scenarios through her head, weighing pros and cons of buying a less expensive, single-story house which would mean losing their 3% mortgage rate, or moving into an apartment. But she doesn’t want to uproot her wife, knowing change can be more unsettling for someone with Alzheimer’s.
“Home is your anchor, where your stuff is, where your memories are,” says Orr. “We really want to stay here. I just hope we can.”
Write to Clare Ansberry at clare.ansberry@wsj.com and Anne Tergesen at anne.tergesen@wsj.com