AARP public service announcement turns spotlight on caregivers' plight

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(AP) WASHINGTON - A woman grips her car's steering wheel and silently lets out a scream as her frail father, on oxygen, coughs beside her and her kids play around in the back seat.

The frustration portrayed in an arresting new public service announcement is recognizable to millions of Americans who struggle to care for aging loved ones while holding down jobs, raising children and taking care of their own health.

"I take care of her, but who takes care of me?" says another one of the public service announcements from the nonprofit Ad Council, which is distributing the ads for TV, radio, print and online use. It's part of a major campaign from AARP and the Ad Council beginning Thursday to raise awareness of the impact of family caregiving as the nation rapidly grays - and to point overwhelmed families toward resources that may ease the strain.

"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 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 or respite services. 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.

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."

[KLynnSimmons]

I have just gone through 5 years of caring for my parents. Two with my dad helping my mother and 3 caring for my mom immediately after his passing. I had to leave my career as a teacher, sell my house and move in with them. You can say that there are services available and that help is out there, but I have to say that I never found it. I checked with organizations like AARP, locally funded programs for adult day care ( no one ever answered the phones or answered emails), no faith based services, etc. I found things online that said "get out of the house everyday. Go for a walk" that kind of thing, but I could not leave my Mom alone to do those kinds of things. If there are services out there for caregivers support and respite, they need to be more visible and access needs to be made EASY because we cannot get out any easier than those we care for. I am a lucky one. I have a house to live in put in trust by my mother before all was lost. I know of many who end up homeless and with no resources when their loved ones have died. I now deal with symptoms very close to those of PTSD, which the grief counselor says is quite common. Not only do we need help during the decline and passing of our loved ones, we need additional support and care ourselves in recovering from the prolonged stress and personal denial of out own needs that takes place as a result of our loving service to our declining and dying loved one.

[marine1957]

I was a care-giver not only for my brother's and my biological mother, but a few years later for our step-mother also. I did try to get help, but neither my brother nor his wife would not stand in for even one day to help in their care so I could have a break.

[ky1946]

Care for the elderly is expensive. My mother-in-law has been in a full care facility for a year and a half. All of her savings and any possessions all long gone. Her intire income, social security and a small military pension (spouse benefit, deceased) are going to the full care facility. Medicade picks up the difference. After using everything saved, selling or converting any property to cash, the government will step up. The only problem is finding a facility that excepts funding in this manner. The other problem lies in the fact that some events incurred with aging require special facilities that are very expensive and beyong the means of the average individual. The percentage of care givers having emotional and physical problems directly related to the act of care giving is quite high and in many cases the care receiver outlives the care giver.
RT, commissioned stephen minister