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MAGGIE JACKSON | BALANCING ACTS

Out-of-pocket elder expenses strain caregivers' finances, lives

Lancaster-based entrepreneur Marcie Giannattasio regularly organizes her 73-year-old father's medications. Giannattasio estimates she spends several thousand dollars a year caring for him. Lancaster-based entrepreneur Marcie Giannattasio regularly organizes her 73-year-old father's medications. Giannattasio estimates she spends several thousand dollars a year caring for him. (Globe Staff / Suzanne Kreiter)
Email|Print| Text size + By Maggie Jackson
December 16, 2007

A bag of groceries, the ambulance bill. A new hot water heater. The "care" in caregiving has an unexpected complication: It's a substantial drain on a caregiver's own pocketbook.

The 34 million Americans who are helping an aging relative or friend often dip into their own savings or paychecks and scale back their household spending to help defray the medical or living expenses of the elder in need, according to the first in-depth study to track out-of-pocket costs associated with such care.

Caregivers spend an average of $5,500 annually of their own money in caring for a loved one over the age of 50, according to the study released in late November by the National Alliance for Caregiving and Evercare, a Minnesota firm that coordinates long-term care. That sum was more than 10 percent of the median household income of the 1,000 caregivers surveyed by telephone.

Marcie Giannattasio, a Lancaster-based entrepreneur, estimates that she spends several thousand dollars a year caring for her 73-year-old father, who lives in his Boston-area home with full-time aides. A doctor, he is bedridden and has end-stage Alzheimer's. Her mother died in June. Most expenses come from his savings and insurance, yet Giannattasio and her sister shoulder many expenses.

"I am constantly making trips to get lotions, a cane, a safety bar for the bathroom, to make sure there's de-icer on the driveway," says Giannattasio, who owns Webo Media. Her commitment to her father also cuts into her work time, and her ability to plan for her own future. "I'm not socking away anything for my retirement," she says.

Of course, no graying parent wants to take from their children. No aunt wants to be indebted to her nephew or niece as they age. But when needs arise and a wallet is empty or the elder is ill, most caregivers readily pitch in, often paying a financial premium for goods or services needed urgently. If the heating breaks, you can't wait until morning. If you need a walker fast, you can't shop around.

"There is a financial toll taken because you're not in a position of choice, you're in a position of need," says Elinor Ginzler, AARP's director of livable communities and the coauthor of Caring for Your Parents: The Complete AARP Guide. "You're also physically and emotionally spent. You're not a good consumer."

The sacrifices add up. To provide care, nearly 35 percent of those surveyed dipped into their savings, nearly one-third cut back on maintaining their home, and nearly one-quarter spent less on their health or dental care. Nearly half cut back on leisure and/or vacations, while 37 percent quit jobs or scaled back their work hours. The study included caregivers who were helping someone over the age of 50 with some activity of daily living, from bathing to paying bills or buying groceries. Caregivers reported spending nearly 35 hours weekly on care. Nearly half lived with the recipient of their care.

As the country ages and more seniors live longer and at home, this hidden, fiscal face of eldercare will affect more families, potentially hindering many people's ability to provide for their own futures. This is just one more way in which "caregiving is a life deferred," observes the National Alliance for Caregiving in its report, "Family Caregivers: What They Spend, What They Sacrifice."

"While there's been so much written about caregiver stress and the health of the caregiver, we never really take into that mix the issue of the financial burden," says Gail Hunt, president of the Alliance, a nonprofit coalition. The group has sought tax breaks and stipends for caregivers.

One way to offset costs is to plan ahead. There are services, from respite care to help with grocery shopping, available often for free or on a sliding fee scale from local agencies or community groups. Call 1-800-AGEINFO (243-4636) to find help in Massachusetts or go to eldercare.gov for similar help nationwide.

Scott Myers, an auto insurance sales manager and father of three, flies from his home in Annandale, Va., monthly to visit his 87-year-old widowed mother in southeast Florida. For three or four days, he stocks her cupboards, takes her to appointments, pays some bills from his own pocket and works on the upkeep of the nearby house she still owns. He estimates that his efforts cost up to $9,000 a year - about what long-distance caregivers spend on average annually, the study found. But Myers, 60, doesn't focus on the tab.

"Somewhere around the age of 50, I finally realized that my parents had really gone out of their way for me," says Myers, who was part of a small pool of 41 study participants to keep a diary of caregiving expenses for a month. "And I needed to make sure I showed my appreciation to them before they died."

Maggie Jackson, author of What's Happening to Home: Balancing Work, Life and Refuge in the Information Age, can be reached at maggie.jackson@att.net.

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