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A)Last July, Julie Baldocchi's mother had a massive stroke and was paralyzed. Baldocchi suddenly had tobecome a family caregiver, something that she wasn't prepared for. "I was flying by the seat of my pants," saysBaldocchi, an employment specialist in San Francisco. Both of her parents are 83, and she knew her fathercouldn't handle her mother's care. The hospital recommended putting her mother in a nursing home. Baldocchiwasn't willing to do that. But moving her back into her parents' home created other problems. Baldocchi,48, ismarried and lives about a mile away from her parents. She has a full-time job and has back problems thatmake it difficult for her to lift her mother. "I couldn't do it all," she says. "But I didn't even know how to findhelp."
B)With help from the Family Caregiver Alliance, she eventually hired a live-in caregiver. "But even if you planintellectually and legally, you're never ready for the emotional impact," Baldocchi says. In the first two monthsafter her mother's stroke, she lost about 30 pounds as stress mounted. More than 42 million Americans providefamily caregiving for an adult who needs help with daily activities, according to a 2009 survey by the AARP.An additional 61.6 million provided at least some care during the year. And many are unprepared.
C)While many parents lack an advance care directive, it's the most basic and important step they can take. Thedirective includes several parts, including: a durable power of attorney, which gives someone legal authority tomake financial decisions on another's behalf; a health care proxy, which is similar to the power of attorney,except it allows someone to make decisions regarding medical treatment; and a living will that outlinesinstructions for end-of-life care. (For example, parents can say if they want to be kept alive by artificialmeasures.) "It's invaluable for the kids, because it's hard to make those decisions for a parent," says JenniferCona, an elder-law attorney at Genser Dubow Genser & Cona in Melville, N.Y. An advance care directive isthe first line of defense if a situation arises, says Kathleen Kelly, executive director of the Family CaregiverAlliance, which supports and educates caregivers. Without an advance directive, the family will have topetition the court to be appointed the parent's legal guardian, says AgingCare.com.
D)It's important for families to talk about long-term care so the adult children know their parents' preferences,wishes and goals, says Lynn Feinberg, a caregiving expert at AARP. But ifs not an easy conversation. Elderlyparents are sometimes suspicious of their children's financial motives, says Susan John, a financial planner atFinancial Focus in Wolfeboro, N.H. One client asked John to hold a family meeting because they needed anintermediary to talk about financial issues, she says. And when there are many siblings, the family decisionscan become a three-ring circus with much acrimony, says Ann-Margaret Carrozza, an elder-law attomey inGlen Cove, N.Y. Families who need information and help sorting out disagreements can call on elder-lawattorneys, financial planners, geriatric care managers and caregiver support groups. In February, AARP said itwill offer its members a new caregiving support service through financial services firm Oenworth.
E)Many families are unprepared for quick decisions, especially when they find out that Medicare doesn't pay forlong-term care, Feinberg says. The median cost of a year in a private room at a nursing home in 2011 was$77,745, according to Genworth. And only those who have spent most of their assets can qualify for Medicaidto pay for the nursing home.
F)Assisted living is another option. Residents can have their own apartment to maintain some independence. Butthe facilities generally provide personal care services, such as meals, housekeeping and assistance withactivities. Still, it's not cheap: The national median cost in 2011 was $39,135, according to Genworth. Assistedliving isn't covered by Medicaid.
G)If they have a choice, at least 90% of elderly parents prefer to stay at home as long as they can, according toAARP research. But if the parents can no longer safely live at home, it can be hard for children to move theminto an adult care facility. There may be another option. Sometimes the home can be modified so a parent canstay there. For example, Baldoechi put in a chair lift for her mother. She also arranged for a home caregiver.
H) Family caregivers take over many responsibilities. One might manage a parent's finances, while anothersibling will take the parent to doctors' appointments and shopping. Those who move in with a parent take on asignificant and sustained burden of care. Jan Walker moved into her mother's home in Leesburg, Fla. After hermother, who is 83, had fallen, she wasn't able to get around as well. Walker,55, has three brothers. But she isthe only daughter, is divorced and has no children. "I always knew that this was the role that I would have, andI guess my mind was prepared for it," says Walker, who now is a full-time caregiver and works from home asa tutorial instructor for a digital scrapbooking website. "When you get into the trenches, it's literally baptismby fire," she says. "New things come up. It's not just about advance planning for finances or medical care. It'severything," she says.
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