Alantris Muhammad says there was no question that she would leave her job after her mother was in a car accident that left her unable to walk or eat on her own.
At 42, she hadn’t even started to think about retirement. But as the oldest of four siblings — and the only one in a dual-income household — she says it was a “no-brainer” that she would look after her mother full time to avoid putting her in a nursing home.
“I gave my boss two weeks’ notice and told him that I had to quit and that I had to go take care of my mom,” said Muhammad, who is now 53. “It was a sacrifice for our entire family.”
Once they become caregivers, adult children are likely to commit a substantial amount of time — about 77 hours on average each month — to looking after their relatives, the researchers found. For people who provide round-the-clock care, the commitment is even greater.
The need for caregivers is expected to grow in the United States as more baby boomers enter retirement. The number of Americans age 65 and up is expected to almost double by 2050, according to projections from the United Nations.
Caregivers often need to make life-altering decisions about where to live and whether to continue to work. Many caregivers take on the full-time role without pay. But even people who are paid for the care they provide for a relative may face long-term financial challenges, caregiving experts say.
In most states — with the exception of North Dakota — caregivers can be paid if the person they are looking after qualifies for Medicaid, said Kathleen Kelly, executive director of the Family Caregiver Alliance, a nonprofit that advocates for caregivers. The rules vary by state in terms of the health needs of the patient and who can provide care (most states do not allow spouses to participate).
Although the programs can provide families with some financial relief, caregivers may still struggle financially without the other benefits they would earn at a traditional job — including health care, disability insurance and retirement plan contributions, Kelly said.
Caregivers being paid through Medicaid programs typically earn the minimum wage, which may be just a fraction of what they earned in the past. And many caregivers spend out of their own pockets to help cover living expenses and medical bills for their loved ones.
The opportunity cost of lost wages can build over time for people who provide informal care at home, costing caregivers an estimated $522 billion a year, according to a 2015 Rand analysis of data on how Americans spend their time.
But the true financial toll can be difficult to quantify, particularly for people such as Muhammad who put their careers on hold.
Her mother, Dorris West, was driving on the expressway when she crashed — an accident that they now know was caused by a brain aneurysm. The impact shattered the bones on the left side of her face, caused her brain to swell and led to a bad break in her ankle.
After West spent a few months in the hospital, Muhammad moved her mother to her house in the suburbs of Chicago so she could help with her recovery. For months, Muhammad slept in her living room on a newly purchased sofa bed so that she could stay near her mother, who was on a feeding tube and could not yet climb the stairs to her new bedroom. Eleven years later, West’s mobility has improved. But West, who is now 70, still has several strokes a month and has a difficult time speaking or doing routine tasks, symptoms that doctors say are probably related to the brain injury.
With the help of a rehabilitation center, Muhammad enrolled in a program funded by Medicaid that pays those who care for people with disabilities. Her wage has increased slightly over time — to $13 an hour from $10.55 — but she is still making about 40 percent less than what she earned when she was selling home and car insurance.
Women are more likely than men to retire early after taking on the responsibility of caring for an aging parent, according to the Center for Retirement Research. Those women who continue to work tend to scale back their schedules by three to 10 hours a week.
With advances in health care, many boomers are expected to live longer than their parents did. But living longer can also mean spending more years with chronic long-term ailments, such as dementia and other conditions requiring expensive care, researchers say.
“People don’t realize that maybe Mom and Dad planned for or had money to live 20 years, but now they’re living to 95, and they’ve run out of money,” said Gail Gibson Hunt, chief executive of the National Alliance for Caregiving, another nonprofit that advocates for caregivers. “It comes as a rude shock that this isn’t already paid for somehow.”
When financial shortfalls arise, it often falls on relatives and friends to cover the difference. More than 40 percent of caregivers spend at least $5,000 a year to help pay for transportation, clothing and medical costs, according to a survey by Caring.com, a website that helps pair consumers with caregivers.
The burden can cause those caregivers to cut back on other financial goals, such as saving for retirement or for their children’s college education, Hunt said.
When Jan Wirpel first moved in with her parents in Minneapolis in 2000, her plan was to save money to buy a condo. But several months later, her father, Gene Wirpel, began to have serious complications related to his diabetes. Doctors said he had six months to live.
Jan Wirpel, who was in her early 50s, gave up plans of buying a home and quit her job to care for him full time. Her mother, Eleanor, did most of the cooking while she helped her father with daily tasks, such as bathing, getting dressed and taking him to doctor’s appointments. He lived nearly three more years, which doctors attributed to the care he received, she said.
But after he died, her mother had her own health problems. They learned she has fibromyalgia, a disorder that causes pain throughout her body. As the pain worsened, she became less able to help with household chores. Wirpel now cares for her mother, who is also experiencing memory loss, on a daily basis.
Wirpel, now 69, is participating in a Medicaid program that pays her nearly 44 hours a week for taking care of her mother. But the actual care she provides to her 94-year-old mother extends beyond the time she is paid for, Wirpel said.
Financial experts say it may be easier to have conversations about how to cover living expenses and other bills before health issues arise. But few families get around to it.
More than one-third of parents said they haven’t talked to their families about how they plan to cover living expenses and other bills once they retire, according to a 2016 survey of parents with adult children by Fidelity Investments.
As a result, few caregivers have time to prepare for the major changes they will have to make to their lifestyles, such as moving to be closer to their parents, cutting back hours at work or footing the bill for health-care services.
Some people who anticipate that they may need to care for their aging parents should boost their savings, which may provide a cushion if they reach a point where they need to quit their jobs or work fewer hours, said Gal Wettstein, an economist for the Center for Retirement Research. Some adult children may also help their parents buy long-term care insurance.
Wirpel says she wishes she had prepared better for the possibility that her parents might need her help one day.
“I wasn’t even thinking about that when it happened,” she said. “It’s going to happen to all of us. We’re going to get older, and we’re going to need help and care. People should always have that in the back of their minds.”