"Most caregivers don't know where to turn for help," said AARP vice president Debra Whitman, whose own family has experienced caregiving twice, for her grandmother and her mother-in-law.
Even knowing what to ask can be a hurdle. That's what Andrea Phillips of Alexandria, Va., discovered when her mother, now 74, visited from Chicago a few years ago and got too sick to go home. She recovered from a heart problem only to be diagnosed with early Alzheimer's.
Phillips, a lawyer with 1- and 4-year-old daughters, raced to find nearby senior housing that her mother would accept and could afford. But already she's having to cobble together additional care as the Alzheimer's worsens. She says her mother skips her prepaid meals in favor of a cookie stash, misses medication despite Phillips' daily take-your-pills phone calls and is embarrassed to find herself struggling to remember and perform personal hygiene the kind of day-to-day issues that health providers didn't address.
"I do constantly feel that I'm playing catch-up," said Phillips, adding that she feels guilty when she gets frustrated. "I'm trying to find the right resources so Mom and I can continue to have a good relationship."
Although they often don't identify themselves as "caregivers," more than 42 million Americans perform some form of consistent care for older or impaired adult relatives or friends, according to a 2009 estimate. It can range from paying bills, to driving Mom to doctor appointments, to more hands-on care such as bathing, and even tasks once left to nurses such as the care of open wounds.
"At first you're just helping out Mom. Then it can become more than a fulltime job," said AARP's Whitman.
She described the average U.S. caregiver as a 49-year-old woman who on top of her regular job provides nearly 20 hours a week of unpaid care to her mother for nearly five years.
An AARP report found family members provide a staggering $450 billion worth of unpaid care annually and other research makes clear that the stress and the time involved can take a toll on the caregivers' own health and finances as they put off their own doctor visits, dip into their savings and cut back their working hours.
Adding to the challenge is that more and more people are living well into their 90s, as Census figures show the oldest-old are the fastest growing segment of the population.
Consider Oona Schmid's father, who is 96 and has advanced dementia. The Arlington, Va., woman has overseen his care for a decade, since her mother died and said she could have better planned how to pay for it if only someone had warned her how long people can live with dementia. She said the bill at her father's assisted-living facility has reached nearly $8,000 a month as he now needs round-the-clock care.
"I don't think he knows who I am, but he still smiles when he sees me," Schmid said. She choked up as she described the pull she feels between her responsibilities to her father and to her 3-year-old son, fretting that there's no money left to set aside for her son's education.
Schmid, 41, works fulltime, pet-sits for extra cash and is exploring options to save on her father's care.
"Maybe this is a terrible thing to say but I'm terrified of how long he's going to live and how much it's going to cost," she said.
Like Schmid's father, very few Americans have purchased private, and pricey, long-term care insurance, and Medicare doesn't pay for that kind of care. That's why family members wind up performing so much of it for so long. The Obama administration last fall ended efforts to establish a government-sponsored program to make long-term care insurance more affordable, finding it financially unsustainable.
A key message of the new campaign is for caregivers not to neglect their own needs.
The ads direct people to AARP's website www.aarp.org/caregiving to find information and services from that organization and others, what Whitman describes as a one-stop starting point for resources.
The site offers Web chats with caregiving experts, online support groups, legal documents and links to such programs as locators for care providers www.eldercare.gov or respite services www.archrespite.org. A new "Prepare to Care" brochure offers to-do checklists for families new to caregiving, and people not as web-savvy can call a hotline at 877-333-5885.
Too many caregivers don't know such services exist, or even that they can ask their loved ones' doctors to refer them for help until there's a crisis, said Dr. Eileen Callahan, a geriatrician at New York's Mount Sinai Medical Center who isn't involved with the AARP campaign.
The AARP project is broader than another new effort targeting caregivers a government website that, as part of the National Alzheimer's Plan, offers families information specific to dementia care at www.alzheimers.gov.
Mount Sinai's Callahan said national efforts to educate all caregivers, regardless of the health problem, are long overdue.
"They should not feel so isolated," she said. "It is so incredibly sad."