Categorized | Opinion, Sondra's Musings

Without support caregivers don’t have a chance

By Sondra L. Shapiro

Until a year-and-a-half ago, Kathi Bailey, 47, felt like an “Oreo cookie.” She was sandwiched between the responsibilities of taking care of her cancer-stricken mother and meeting the needs of her two teenagers, her husband and her full-time job.

Bailey describes herself as the “classic caregiver,” a role in which she was immersed for four years until her mother died. She was her mother’s advocate, transporting her back and forth to doctor’s appointments, chemotherapy sessions, hospitalizations and hospital emergency room visits. Bailey managed her mother’s prescriptions and sorted out health insurance payments.

“I played her little pit bull,” she said. “When someone has cancer, trying to understand where you have to be and when, and what bills you have to pay can be difficult to navigate, especially when mixed with memory loss, stress and medications. It takes a tremendous amount of pushback to get both the services you need and the services you paid for.”

Bailey’s experience represents what is becoming a national healthcare crisis in the workplace and at home. Caregivers now represent nearly 30 percent, or 65.7 million of the American population, according to a newly released comprehensive study, Caregiving in the U.S. 2009.

The study, which was funded by MetLife Foundation and conducted for the National Alliance for Caregiving in collaboration with AARP by Mathew Greenwald & Associates, is based on interviews with 1,480 caregivers chosen at random.

The new study was designed to replicate those done in 1997 and 2004. The contrasts in data in such a short time reveal gaping holes in public support in terms of information, training, counseling and financial aid.

Among the findings:

•73 percent of caregivers are juggling jobs with providing care to a frail adult, elderly person or children with special needs;

•two-thirds get help from an unpaid person, a family member or friend. Many of those over 65 are doing the caregiving alone;

•66 percent of caregiving is provided by women. “Caregiving is still mostly a woman’s job and many women are putting their career and financial futures on hold as they juggle part-time caregiving and full-time job requirements,” wrote the authors;

•86 percent are providing care for a relative;

•Seven in 10 caregivers care for someone over age 50;

•Caregiving lasts an average of 4.6 years;

•Among caregivers of adults (ages 18 or older), the average age of the caregiver rose from 46 to 49 since the last study was done five years ago;

•Among caregivers of adults, the average care recipient’s age increased from 67 to 69, coinciding with an increase in the percentage of those age 75 or older (from 43 percent to 51 percent);

•Three-quarters of care recipients live with the person who is providing the care for them or they live within 20 minutes of each other; and

•The primary reason people need care are old age (12 percent), Alzheimer’s disease (10 percent), mental/emotional illness (7 percent), cancer (7 percent), heart disease (5 percent and stroke (5 percent).

Time spent caring for a chronically ill person is time taken away from other family members including a spouse and children. “They (caregivers) feel guilty because they aren’t spending enough time with their own children, but they would feel guilty if they weren’t spending time with the person for whom they are providing care,” said Gail Hunt, president and CEO of the National Alliance for Caregiving, during a press conference to unveil the findings.

Elinor Ginzler, AARP Senior Vice President for Livable Communities, likens the average 20 hours a week spent providing care to a part-time job. “Their work, health and time with family and friends already bear some of the cost for this amped up juggling act.” Caregivers need help and information to continue to keep all the balls in the air, she said.

Though there are rewards, the experience inevitably takes its toll on those who care for a friend or loved one. Bailey admits that she ended up on Prozac for situational depression, gained weight and was not taking proper care of herself. “I was so worn out,” she said during a recent phone conversation. “I never slept at night during the last six months with worry about raising my own two children, working full time and caring for my mother.

“I was … physically and emotionally exhausted. But I kept doing everything. When hospice stepped in for that last month it was amazing because I could go to work and someone was there to care for my mom.”

The study clearly shows that caregivers are experiencing mental and physical stress, yet most do not resent the responsibility — only one-third say they are caving to the burden of care. Rather, they long for a more supportive culture.

Because women are the primary caregivers, Bailey suggests that policy must address the large shifts in roles the gender now plays in society.

“We are getting further away, not closer to a culture in the United States that is supportive of people who are living real lives,” said Bailey. “We are all working now. We aren’t at home where we are readily available to our children or to our parents. It is much harder.

“In my workplace and among friends and family, everyone understands that taking care of your aging parent is the right thing to do. But not all people are around people that feel that way. So, how do we produce that in the workplace and our public policy so that everybody gets that?” asked Bailey, who is the director of the Clinton Senior Center.

Caregiving does have a negative impact on health and causes financial hardship in terms of days lost from work or quitting a job to provide care, said Hunt, from the National Alliance for Caregiving. Most caregivers are being forced to make adjustments. They are coming into work late, leaving early, going part-time. One in five is taking an unpaid leave of absence. Ten percent give up their job.

There is a tremendous pent-up need for information on ways to manage stress, to balance work and family and to keep loved-ones safe at home. Usually caregivers look for information by contacting a health care provider, searching the Internet or speaking to friends and family. Nearly half say they use some kind of technology to help them, such as electronic response systems or electronic calendars to keep track of doctor’s appointments.

Some good news is that caregivers are receiving more day-to-day help than they were five years ago. The percentage is up 9 percentage points. However, there has been a six-percentage point decrease in those who report using paid help, a decrease that could potentially be linked to the recent recession, surmised AARP’s Ginzler. “They can’t afford it,” she said.

Since the study is a blue print for action to improve the lives of caregivers, the need for better public policy and a change in perception are the messages to take away.

Ginzler outlined five areas of support caregivers need:

•Identify caregivers who are most at risk from either their own deteriorating health or own financial insecurity.

•Identify and advocate for programs that are going to make a real difference in their wellbeing and their ability to continue to provide care.

•Continue to promote the use of technology.

•Realize that programs need to reach caregivers of all ages. This is an intergenerational issue.

•Help families to plan proactively for their own aging and the aging of their family members, and the possible need for assistance as they get older.

According to the study, the public supports caregivers want most are tax credits for things such as home or van modifications or to spend on an aide; a voucher program that would pay family caregivers; and transportation services for those in their care.

The authors recommend support to include better access to information, help with transportation, emergency-response devices and respite services, which can give caregivers a short-term break. The study shows caregivers are more often utilizing community services (from 4 percent to 11 percent in five years) such as transportation and respite care to help them avoid burnout.

Currently there are some support services built into health-care reform in both houses, according to Ginzler:

•There is additional funding for the Family Caregivers Support program.

•Improvements are being made to the Medicaid home and community-based services such as the Independence at Home law, which would provide assistance to individuals with chronic conditions as well as caregivers.

•The Community Living Assistance Services and Supports (CLASS) Act., a long-term care insurance provision, would offer money to pay caregivers, respite care and other services that would reduce a caregiver’s burden.

•There’s a provision requiring nursing home transparency, which would give caregivers better information when they are selecting a nursing home.

•And transitional care legislation would help caregivers as their loved ones move in and out of a hospital and would educate caregivers so they can be a help in the transition.

From her first-hand experience, Bailey would like to see an expansion of the Family Leave Act, which offers unpaid time off from a job for individuals to provide care for family members, to include some kind of pay. “I took a leave of absence after my mother died because I was so burned out at that point. So that was a wonderful law on the books that I could take advantage of.”

Bailey also believes that insurance companies need to be more transparent in what they do and do not cover. People are mostly healthy when they select health insurance, Bailey believes. So, the limitations of a policy are not usually evident until a person is sick and too weak to deal with issues. “Don’t have loopholes that make people feel dumb,” she said.” People think they have insurance to get them through a catastrophic life experience. Then these insurance companies have all these gaps that you don’t know about until you’re relying on the policy.”

That said, there is no guarantee those proposals in health care reform that would help caregivers will end up in a final package Congress submits to the president.

This is most evident when you have lawmakers such as Joe Lieberman, saying the CLASS act is too costly. And the legislation Congress is working on also makes cuts to home healthcare.

From recent budget cuts in Massachusetts, it seems government here is also shortsighted in its policies. Take for example Gov. Patrick’s cuts to the home-care program, Prescription Advantage and other services that help seniors remain independent at home. These actions could end up jeopardizing the wellbeing of caregivers and of those for whom they provide care — which could end up costing government more if that frail individual ends up requiring institutional care.

When a day-care program is forced to shut its doors because of decreases in funding, such as the recent closing of a day care in South Boston, you take away the tools caregivers are saying they need for respite and to tend to other responsibilities.

“Why do we still make decisions based on spread sheets based on the here and now? Why don’t they also include what the financial impact will be five years from now?” wonders Bailey.

“It’s a bottom line thing. It’s a number’s game. There still isn’t enough weight placed upon the social outcomes for the math that they make their decisions based on. They are not thinking ahead to the long-range financial impact,” she said.

Kathi Bailey is right. Even if you gather all the studies and recommendations in one big package and ship them off to Washington, nothing will make a difference unless we all embrace a more supportive culture.

Sondra Shapiro is the publisher of Fifty Plus Life. She can be reached at Read more at Follow her at

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