When Eric Epstein, 56, a lawyer from New York City, learned that his 83-year-old father, Bill, had fractured his right hip while vacationing in Utah, he was on the next plane. “I wanted to make sure he was getting quality care in an unfamiliar hospital,” Epstein recalls. When the doctors determined a few days later that Bill would need a second surgery, Eric was instrumental in booking the return flights to NYC, arranging for transportation, wheeling his 6’4”, 250-pound father onto the plane, and transferring him carefully from the wheelchair to his seat.
Now that Eric’s father is recovering at a nearby rehab facility, Eric visits at least four days a week (often after a long day at work) to check on his progress, and will help prepare his mother to prepare their apartment when Bill gets the green light to return home in a few weeks.
Eric is one of 16 million male family caregivers in the U.S. Like their female counterparts, male caregivers are often called upon to perform a range of tasks—from managing finances and grocery shopping to housework and meal prep as well as challenging medical and nursing tasks.
When I hear Eric’s story—and when the AARP Public Policy Institute releases research on this important topic—I’m struck by the fact that the male population traditionally isn’t recognized for performing caregiving tasks. Yet there are many of them, and they’re rising to the challenge.
Leading the Way on Male Caregiver Research
Until recently, not much research was available that examined the impact of caregiving on male family caregivers, whether they’re caring for a parent, spouse, other relative, or even a neighbor or friend (also included in the term family caregiver). It’s a topic I’ve long wanted the Public Policy Institute to explore, so that’s what we’ve done. In March we released a report by my colleague Jean Accius, PhD, “Breaking Stereotypes: Spotlight on Male Family Caregivers,” that provides current information about the experiences and challenges facing this important segment of our health care system. A major takeaway from the report is that, contrary to many people’s assumptions, men represent four in 10 family caregivers.
Since the report’s release, Jean, who serves as VP of livable communities and long-term services and supports for the AARP Public Policy Institute, has become a go-to source on the topic for media outlets including Forbes and ESPN’s The Undefeated. And, of course, he’s blogged on the topic for our website.
One statistic that jumped out at me from the research is that nearly two-thirds of male family caregivers indicated that their caregiving experience was stressful, both physically and mentally. Male caregivers also are less likely than women to seek external support to deal with this stress.
Support Is Available
To help alleviate the stress and get the word out that support is available, we produced a series of videos, specifically targeted at the male caregiving community. Two of the videos focus on support groups in various communities that help men realize they’re not alone in their day-to-day struggles to care for loved ones.
With Father’s Day coming this weekend, I hope you’ll take the time to acknowledge any male caregivers in your life, and perhaps offer to take a task or two off of their plates. Running an errand on a relative or friend’s behalf may not seem as significant as a necktie or a set of golf clubs. But chances are, he’ll appreciate the effort as much as any gift you could buy.
Are you a male caregiver, or do you live with one? If so, please share how you (or he) keep(s) stress at bay. I would love to share your tips in a later post.
Last week, U.S. Senators Joni Ernst (R-IA), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), and Elizabeth Warren (D-MA) and U.S. Representatives Tom Reed (R-NY) and Linda Sánchez (D-CA) introduced the bipartisan Credit for Caring Act (S. 1151/H.R. 2505) and AARP endorsed the legislation. The bill would help support America’s family caregivers by offering a federal tax credit for those who qualify.
“One of the biggest stresses of being a family caregiver is the financial strain from taking care of a loved one. As a result, this puts many of us into financial peril,” said Amy Goyer, AARP’s Family and Caregiving Expert and a family caregiver, herself.
Like many family caregivers, Amy takes on huge responsibilities that can be overwhelming, exhausting — and frequently financially challenging.
Much of Amy’s salary goes to caring for her 93-year-old dad with lives with Alzheimer’s. She takes care of everything from mortgage payments to medications. In addition to their basic needs, Amy is also responsible for keeping her father’s service dog Jackson healthy, sometimes she pays a person to keep their home clean and she even hires in-home care to help her father when she travels.
Last year, family caregivers spent roughly $7,000 on average – or nearly 20 percent of their income — on out-of-pocket costs providing care for their loved ones. And on average, long-distance family caregivers spend nearly $12,000 last year to care for their loved ones.
On top of the out-of-pocket costs associated with caregiving, some family caregivers work part-time or quit their jobs altogether to care for their loved ones. Family caregivers are also dipping into their personal savings, cutting back on their personal spending, and saving less for their own retirement to care for others.
Amy thinks, “the Credit for Caring Act could help provide some financial relief to reduce the caregiving costs for millions of eligible family caregivers across the country who work.”
To qualify for the Credit for Caring Act, taxpayers must be: an eligible family caregiver who pays or incurs qualified expenses for providing care to a spouse, child, parent or other qualified individual with long-term care needs and also earn an annual income of more than $7,500.
For more information on AARP’s advocacy to support family caregivers, visit www.aarp.org/supportcaregivers.
In a statement today following the release of the White House proposed budget, AARP Chief Advocacy and Engagement Officer Nancy LeaMond opposed cuts that would harm American families:
“AARP opposes the budget proposed today because it explicitly harms the very people we are counting on the President to protect. Today’s budget proposes to cut Social Security benefits, as well as funding for critical health, hunger, housing, and transportation assistance to low and middle income seniors. This budget sends a powerful message to older Americans and their families that their health and financial security is at risk.”
“We do want to acknowledge the Administration’s paid leave proposal. Although it must be improved so that it addresses the workplace needs of all family caregivers, we hope that it leads to a national conversation about ways to support family caregivers in the workplace.”
AARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering Americans 50 and older to choose how they live as they age. To learn more, visit AARP online.
With this being the week of Mother’s Day, it’s a good time to highlight a less-talked about role of many women. As an AARP Public Policy Institute report recently discussed, six out of 10 family caregivers are female. (By “family caregiver,” I mean those who aren’t paid to help an ill or infirmed family member.) Particularly at this time of year when we honor mothers, it’s important to remember that many of these women care for parents or a spouse while simultaneously raising children—a difficult juggling act no matter how good of a multi-tasker you are!
Adding to that, the caregiver’s role has become more challenging over time. While family caregivers once focused mainly on assisting with the activities of daily living and social support, the first nationally representative study of family caregivers providing complex care activities, co-published by AARP Public Policy Institute and the United Hospital Fund with PPI leading the research, found otherwise. The study’s findings revealed that half of caregivers were performing “medical/nursing tasks” including but not limited to the following:
- Administering multiple medications (including injections)
- Providing wound care
- Managing colostomies
- Inserting catheters
- Giving tube feedings
With the pressure to perform tasks typically relegated to health care professionals, it’s no wonder 41 percent of caregivers report high levels of emotional stress.
Fortunately, AARP, working with its state offices and other stakeholders, has advanced state-level legislation that addresses the need to support family caregivers. That support comes primarily from nurses, who offer instruction on medical/nursing tasks as part of a patient’s discharge plan. As part of the legislation—called the Caregiver, Advise, Record, Enable (CARE) Act, which is now the law in 38 states and territories—patients have the right to designate a family caregiver who is named in the patient’s hospital record. Designated caregivers are then directly involved in the discharge planning and are offered instruction in how to perform any complex tasks they’re expected to perform.
The end result: When family caregivers leave the hospital with patients at their side, they will have received any needed information or training. Rather than feeling alone and lacking support and information, they can feel secure knowing that their daily caregiving tasks have been thoroughly explained by a health care professional and any questions have been addressed to their satisfaction.
To further ease caregivers’ concerns once they’ve returned home with the patient, AARP Public Policy Institute has created a new initiative: a Home Alone Alliance of organizations committed to producing resources such as teaching videos, which help with everything from Preparing Your Home for Safe Mobility to What to Do When Someone Falls. (In my next post, I’ll blog more about some new and exciting video releases that we have planned for the coming months.)
Of course, women aren’t the only ones serving in the family caregiving role; millions of men are taking up the task as well. We’ll discuss them in a blog next month, when another day celebrating parents comes around.
But this month it’s time to honor mothers, including those performing family caregiving duties. And as for the rest of the year, it’s good to know that tools like the CARE Act and teaching videos are there to support caregivers year-round.
It’s clear that a majority of people want to remain independent as they age and now technology can help them do so. As a Northern Virginia resident and an employee of AARP, I was drawn to a recent local event titled “Can Technology Help Older Arlingtonians Age Independently?”
The event was the fourth installment of Arlington County’s Digital Destiny campaign which seeks to explore the impact of the Digital Revolution on defined aspects of life for the county and its residents.
This session featured Arlington county employees, local residents and aging experts discussing tech trends likely to have the greatest impact on older Americans.
- Amy Doherty, Chief Information Officer and AARP
- Brittany Weinberg, Director of Community Engagement,Aging2.0
Doherty discussed three emerging trends and how they can apply to aging independently:
- Leveraging virtual reality to make the aging experience real to people of all ages.
- Investigating ways that robotics can aid in caregiving and social isolation.
- How artificial intelligence could strengthen programs like the Fraud Watch Network that provide citizens with information on how to avoid scams.
Brittany Weinberg, the Director of Community Engagement, Aging2.0. explained how people-centered-design, including voice recognition and gesture controls, is improving the technology experience for people of a variety of ages and is helping to solve issues related to caregiving and social isolation. She also noted that the prevalence of sensors within the home helps enable people to age independently and live in their homes for as long as possible.
After each speaker presented, the audience was charged to brainstorm ways they thought technology could make their lives easier.
The ideas presented included:
- Programs that enable schools to give back to the 50+ community by allowing children to tutor older adults
- Programs like Cyber Seniors and AARP TEK were mentioned as existing resources to help educate adults about technology.
- Libraries were mentioned as good resources and as go-to sites for downloading digital books, taking classes and accessing educational videos via Lynda.
- The group also encouraged tech companies to design for all ages and accessibility
During National Nurses Week, I am making a special effort to say, “thank you,” to all the nurses in my life, and I invite you to do the same. Each and every day, in communities across the country, nurses help their patients to get and stay well. They use their incredible skills to comfort us in difficult times, and care for us when we’re at our most vulnerable.
For America’s 40 million family caregivers, nurses often become even more heroic as they help us care for our parents, spouses and other loved ones. For me, Nurse Sue was an invaluable member of our family’s team. Her assistance was critical to keeping my Mom safe at home.
Family caregivers often share their stories with us on I Heart Caregivers and the @AARPadvocates Facebook page. It seems many also have their own versions of Nurse Sue:
Judith: “I could not have been my mother’s caregiver without all the care and advice given to me by the nurses. THANK YOU ALL.”
Nana: “When my husband was alive the nurses were angels. They really took care of my husband in our home, especially the hospice ones, they were just awesome.”
Barbara: “Where would we be without them [nurses] to care for us & our families when we need them?”
Dolores: “Nurses are in a league of their own! They do such wonderful work and it often goes unnoticed. I have a lot of admiration for nurses!”
Nurses heal. Red tape doesn’t.
That’s why AARP is fighting to cut through the red tape that prevents nurse practitioners—and all advanced practice registered nurses—from doing their jobs. Right now, 28 states still have outdated rules that restrict nurse practitioners from using all their skills and training to provide primary and preventative care, including:
- routine health care such as diagnosing and treating patients,
- management of chronic conditions,
- ordering lab tests,
- prescribing medications
- performing annual exams
- and much, much more
Keep in mind: nurse practitioners have master’s or doctoral degrees and advanced training, so they can give patients the care we count on. By modernizing state rules, patients, family caregivers—and our loved ones—will have better opportunity to receive the care we need, when and where we need it. And, yes, this means: at home and in our communities.
To all nurses, again, I give you my thanks. Your caring helped make me a better, stronger family caregiver. For that, alone, I am grateful.
Where does your state stand when it comes to rules that allow nurse practitioners to do their jobs?
Sign up to get involved and help AARP cut the red tape.
Elaine Ryan is the vice president of state advocacy and strategy integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.