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The cost of caregiving: 'A sacrifice for our entire family'

The cost of caregiving: 'A sacrifice for our entire family'
Alantris Muhammad said she found puzzles a helpful brain and dexterity exercise for her mom. (Alyssa Schukar / For The Washington Post)

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.

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"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," says Muhammad, who is now 53. "It was a sacrifice for our entire family."

Her experience matches those of millions of Americans who provide care for an aging or disabled parent. About 17% of adult children take care of their parents at some point in their lives, according to a report from the Center for Retirement Research at Boston College.

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 ages 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, says Kathleen Kelly, executive director of the Family Caregiver Alliance, a nonprofit organization 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 healthcare, disability insurance and retirement plan contributions, Kelly says.

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 pocket 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 Corp. 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 on 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% 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.

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With advances in healthcare, 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 health 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," says Gail Gibson Hunt, chief executive of the National Alliance for Caregiving, a nonprofit organization 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% 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.

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