Informal caregivers receive recognition, support

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By Sondra Shapiro

It was supposed to be a quiet evening at home with dear friends. I spent the afternoon cooking and setting the table. Two hours before the meal, my friend called to say she had received a call from her 85-year-old mother, who had just been admitted to the hospital. Complicating issues, her mom lives in a neighboring state.

Needless to say, dinner plans were put on the back burner as my friend rushed to be by her mom’s side.

Her mother was diagnosed with pneumonia, which led to other complications. Every day for a week, my friend traveled to the hospital for conferences with doctors and to check on her mom’s wellbeing.

When her mom was well enough to go home, my friend was overwhelmed by the task of arranging for post-hospital care. She was also concerned about her mom getting the proper nutrition and didn’t know how to handle the older woman’s lethargy and depression.

sshapiro_headshotMost informal caregivers have similar stories to tell. According to AARP, 42 million Americans, 1.3 million in Massachusetts, help care for aging parents, spouses and other loved ones. As a small business owner, my friend is also typical of the three out of five caregivers that are in the labor force.

The average family caregiver is a 49-year-old female who takes care of a 77-year-old woman — usually her mother. She provides 20 hours a week of assistance to her loved one, although she may be on call around-the-clock.

“When it comes to family dynamics, caregiving is the norm,” said Mike Festa, state director of AARP Massachusetts, “If you’re not a caregiver now, you were one in the past or you’ll likely be one in the future.”

The majority of older Americans prefer independent living.  To ensure that lifestyle, informal caregivers provide the bulk of assistance, including help with bathing and dressing; meal preparation; managing finances; transportation and grocery shopping, according to AARP.

In Massachusetts, family caregivers provide unpaid care valued at a $10.6 billion annually. The cost of informal caregiving for U.S. elderly is $522 billion annually, according to a new RAND Corporation study. Americans spend an estimated 30 billion hours a year providing care to elderly relatives and friends. That cost is measured by valuing the time caregivers have given up in order to be able to provide care, according to RAND, a nonprofit research organization.

The study improves on earlier estimates about the value of informal caregiving by making use of the 2011 and 2012 American Time Use Survey database that provides up-to-date cost estimates. Beginning in 2011, the American Time Use Survey, conducted by the U.S. Bureau of Labor Statistics, began asking participants about time spent helping elderly relatives with daily activities. Respondents also reported on their employment status.

Researchers calculated hourly wages for working caregivers by dividing weekly wages by weekly hours worked, and for non-workers by estimating wages based on characteristics such as education, age and gender.

Replacing that informal care with unskilled paid care at minimum wage would cost $221 billion, while replacing it with skilled nursing care would cost $642 billion annually.

Rand used these cited parameters to reach its conclusions. “Our findings provide a new and better estimate of the monetary value of the care that millions of relatives and friends provide to the nation’s elderly,” said Amalavoyal V. Chari, the study’s lead author, a former researcher at RAND and a lecturer at the University of Sussex. “These numbers are huge and help put the enormity of this largely silent and unseen workforce into perspective.”

The RAND study results make a case for the workplace flexibility policies that offer paid time for caregivers being considered by a number of states, said Dr. Ateev Mehrotra, co-author of the study. He is a researcher at RAND and an associate professor at the Harvard Medical School.

The monetary cost of care is only part of the equation. Feelings of guilt, helplessness, anger and pressure take a toll on those providing care and can ultimately result in physical or emotional sickness. “At a time when the need for social and emotional support is the greatest, caregivers often face feelings of isolation that jeopardize their health and well-being, according to information provided by Aging Institute, a Pennsylvania-based nonprofit that provides services for adults, families and caregivers. “Social interaction plays an important role in maintaining a caregiver’s health by providing an opportunity for communication and an outlet for emotional expression.”

The recent launch of iheartcaregivers.com by AARP provides such an outlet by allowing caregivers to share their stories. Besides a cathartic exercise for the writer, a perusal of the site and its individual stories reveals candid and poignant stories that other caregivers could easily relate to and learn from.

Some snippets:

Nancy from Maryland — “I figured I could manage a couple days before the nurse started. But within an hour of arriving home, I discovered that the line to my mom’s (very large) oxygen tank was 4 feet long – which precluded any kind of mobility. I began an endless series of calls to the pharmacy.

“Didn’t the hospital tell you to get the deluxe and portable system?”

“Well, no, they didn’t tell me ANYthing.”

Amy from Arizona — I’ve been a caregiver my entire adult life. First I helped support my grandparents. Then I helped my mom, when she had a stroke at age 63, some 20 years ago, making frequent cross-country trips from Washington, D.C., to Arizona. Mom broke her hip while visiting me in 2004 and I nursed her through that. When Dad showed signs of Alzheimer’s disease, I began managing their finances from a distance and my sister who lived nearby helped with doctor appts. In 2008, that wasn’t enough, so I adapted my work, choosing jobs that let me telecommute, and I began working from Arizona a week or two a month.”

Greg from Vermont — “My sister Tracy has just been diagnosed with cancer. My immediate family are now engaged in figuring out how to care for my sister as she focuses on her recovery.

“I have experience with employers and health insurance companies. Dealing with both of these entities can be time consuming and emotionally draining. This is something very real and important that I can do for my sister so she does not have to address these pieces as she recovers from surgery and gets ready for treatment.

“Here’s a tip — become a “proxy” for your loved one with their health insurance company. Becoming a “proxy” is easy and can lift a lot of weight off the shoulders of the person who just needs to focus on getting well.”

Because informal caregiving is becoming commonplace, more information and support is being given to help assuage the financial burden and emotional turmoil that often comes with the territory. The recognition also helps my friend and others like her to feel less isolated as they perform the tasks so critical to ensuring the wellbeing of loved ones.

Sondra Shapiro is the executive editor of the Fifty Plus Advocate. Email her at sshapiro@fiftyplusadvocate.com. Follow her online at www.facebook.com/fiftyplusadvocate, www.twitter.com/shapiro50plus or www.fiftyplusadvocate.com.