In August 2011, Jenny and Mike Hamand and their four children were finally settling into Michigan. They’d moved from Iowa a few years before when Mike’s job had been transferred, and now Jenny was working as a substitute teacher, while the kids were settled into their routines of school and activities.
Then came the call from Iowa that changed their lives all over again.
Jenny’s 83-year-old mother, Marilyn Hill Currant, 51BA, had suffered a stroke. Earlier that year, Marilyn had been diagnosed with the early stages of dementia, and it became clear after the stroke that she wouldn’t be able to live on her own. Although Jenny’s four siblings live in Iowa, the family decided it would be best for Marilyn to move to Michigan.
That’s how the Hamands joined the growing number of family members who provide unpaid care for loved ones in their homes instead of a care facility.
A few months ago, delegates at the TEDMED 2012 conference, which brings together thousands of experts from various disciplines, selected the “caregiving crisis” as the second most important health and medical issue that the nation faces. (The need to invent effective wellness programs was deemed the top priority.)
“Caregivers have few tools, few support systems, and receive minimal, if any, training for these responsibilities,” they noted. “What innovations can we develop specifically to support the caregiver community?”
In other words, how can we care for the carers?
According to the National Family Caregiver’s Association, more than 65 million people, or 29 percent of the U.S. population, provide care for a family member or friend in any given year. It’s not just people caring for elderly relatives; about 1.4 million children aged 8 to 18 look after an adult relative, and many caregivers are spouses, siblings, friends, or parents caring for special-needs children.
The typical caregiver, according to the National Family Caregiver’s Association, is a 49-year-old woman caring for her widowed 69-year-old mother. More than 37 percent of those women have children or grandchildren under 18 years of age living with them—just like Jenny. Experts call them the “sandwich generation,” squeezed between their children and their parents and looking after both.
Jenny’s decision to take on this role meant some big changes for her family: husband Mike, 89BSE, and children Brian 18, Brooke, 15, Grant, 11, and Trent, 9. First, some practical concerns had to be addressed: the family had to sell Marilyn’s house and car, move all of her belongings to Michigan, and deal with medical insurance, as Marilyn’s coverage was affected when she moved out of the state. Jenny quit her part-time substituting job to spend her days taking her mother to physical therapy, speech therapy, occupational therapy, and doctor’s appointments, as well as caring for her mother’s basic needs until she re-learned how to do them on her own.
The entire family had to adjust in other ways. Daily routines altered; daughter Brooke had to relinquish the first-floor bedroom to Marilyn; and all the kids had to take on more responsibility. The family dynamic changed in subtle, but important ways.
“Discussions at family dinner are different because Mom’s there, and if we don’t include her then she feels left out,” Jenny says. “We may not always get to talk about things we normally would. The kids have had to step up and think about ‘How’s this going to affect Grandma?’ They can’t be running around the house and upsetting her, they can’t leave their toys around on the floor because Mom might trip over them. And they’ve had to step into more of a caregiver role than a typical 9- or 11-year-old would have to.”
As her mother has regained some of her abilities to take care of herself, Jenny recently returned to work on a part-time basis. But that means her sons Grant and Trent need to pitch in and be there for their grandma after school before their mom gets home.
The Hamands’ children are learning important lessons, says Mercedes Bern-Klug, 82BA, 84MSW, UI associate professor of aging studies in the School of Social Work. What children discover about giving—and receiving—care within the family will help bring about some much-needed changes in our society’s attitudes.
“We need to socialize our children from the very beginning that we are interdependent,” Bern-Klug says. “Children need to help out and contribute as well as accept being cared for, so they can learn that this goes on throughout life. We give and take throughout our lifespan.”
Such an attitude is critical, Bern-Klug says, because of our society’s “myth of independence.”
We need to recognize that it’s also an art to receive care with grace,” she adds. “In a society like ours, it’s very difficult to be on the receiving end of care for a long time. Many of us haven’t learned how to accept care when it gets to the point where we need help to go to the restroom, eat, or get dressed. We’ve put all our effort into avoiding needing it.
“It’s a delicate balancing act to be appropriately grateful and appreciative when you’re the recipient. And it’s an art to be able to give care so that the person receiving it doesn’t feel like a burden. It’s a situation in which humans can shine.”
Jenny tries to keep this perspective in mind, aware that she isn’t just caring for her mother’s physical needs, but also helping her cope psychologically with major life changes.
“We have to play a little bit of psychiatrist with her,” she says. “Mom’s very much aware of her age, her car being taken away, and friends passing away. When you bring a parent into your home, you have to stay positive for them because they are going through their own issues of being dependent on their children.”
Bern-Klug also emphasizes that caring for a loved one can be a privilege: “Many people feel a sense of great satisfaction and accomplishment in taking care of loved ones and being part of their lives.”
Ideally, caregivers would be fully supported by the community, understanding employers, and family members—but that’s not often the case. The Family Caregiver Alliance reports that 70 percent of working caregivers suffer employment-related difficulties due to their dual roles. Many have to rearrange their work schedules, decrease their hours, or take unpaid leave.
While most people and employers know and accept that the Family and Medical Leave Act (FMLA) provides time off for new mothers when a child is born, few realize that it also applies to caregivers of adults. And while many businesses provide daycare for employees’ children, they probably wouldn’t consider doing the same for adults who need care.
Brian Kaskie, UI associate professor of health management and policy in the UI College of Public Health, calls this a double-standard. “We need a public conversation that will lead to policies and programs,” he says. “We need our culture to accept that it would be nice to be able to spend as much time with a sick or dying family member as with a newborn child.”
At the University of Iowa, the Family Issues Charter Committee reviews and makes recommendations on programs, plans, and policies “that promote a positive climate for families of faculty, staff, and students through the lifespan.” An estimated one in 20 employees provides some kind of caregiving for an adult dependent, and Kaskie is helping organize a survey that assesses their needs and awareness of existing services.
Such efforts aren’t just the right thing to do; they also make good business sense. Studies by the Family Caregiver Alliance estimate that it costs U.S. businesses about $3.3 billion to replace women who quit their jobs because of caregiving responsibilities. Billions more dollars are lost due to caregivers’ absenteeism or workday interruptions.
Currently, the university partners with Elder Services in Iowa City to help employees access support services. These include social workers to help coordinate medical care, fill out forms, apply for financial assistance, write checks, and pay bills; home-delivered meal programs; and a transportation program to take people to and from doctor’s appointments.
Seeking help early is critical; often, caregivers wait until they’re burned out and almost desperate. Just discovering what services are available can provide comfort. “Knowing they’re out there if and when you need them relieves some of the stress,” says Judy Parks, 88MA, director of Elder Services’ case management program. “Then you’re far more likely to be able to continue than when you’re in panic mode.”
Still, even with outside help and support, the role of caregiver can be draining. On average, caregivers provide 20 hours of care a week. (According to the National Alliance for Caregiving and Evercare, in 2009 the value of the services family caregivers provide for “free,” when caring for older adults, is estimated to be $375 billion a year—almost twice as much as was actually spent on homecare and nursing home services combined.) The intense mental and physical demands of their unpaid role leave caregivers especially vulnerable to depression or chronic illnesses. More than a third of family caregivers of people with dementia suffer from clinical depression, while stressed-out caregivers have a 63 percent higher risk of mortality than noncaregivers.
Jenny credits her husband, Mike, for supporting her during this major change in their lives. They work hard to ensure their relationship stays strong, including taking a weekly marriage enrichment class that provides time for them to recharge and reconnect.
Jenny has also begun looking for ways to take care of herself so she can better care for her mother. “My faith has gotten stronger,” she says. “I definitely pray more, asking for some guidance from somewhere else other than doctors and therapists.”
She also began journaling, which has proved therapeutic. “I can lay it all out there, lay out all of my emotions,” she says. “And I think that, later on, they will be some pretty powerful words of the journey I’m taking with my mom.”
Journaling can help improve physical health as well. For the last 10 years, Howard Butcher, UI associate professor of nursing, has been studying how family caregivers benefit from writing down their feelings and experiences. He found that after just four days of journaling, participants’ levels of the stress hormone cortisol began to decline. Other studies have shown similar results in people with chronic pain, depression, and other illnesses.
The journals showed what Butcher expected to see: caregivers faced issues like grief and loss of companionship, and they struggled to cope with the financial strain or their loved one’s difficult behaviors. But, another common theme came as a surprise.
“I didn’t think people would find anything positive about being a caregiver, but some did find joy in the experience,” he says. “They felt a sense of enhanced spirituality, and some mentioned learning new things about themselves and realizing they possessed a strength they didn’t know they had.”
Jenny’s experience reflects those findings. In addition to her strengthened faith, she’s discovered unexpected benefits of having her mother become a full-time member of her household.
“Mom tells stories about her past; sometimes it’s a thousand times in a day that she’ll tell them,” she says with a laugh. “Those are things that the other grandkids don’t get to hear; they don’t have that kind of relationship with her. And my children have learned some pretty valuable lessons in that they see the importance of caring for others in the family. Hopefully it will be a good role model for my children if it should happen to me.”
In fact, with the 65-and-older population expected to more than double from 35.1 million in 2000 to 71.5 million in 2030, many of today’s children and young adults will face this kind of situation, whether it involves caring for people with dementia, cancer, Huntington’s disease, traumatic brain injury, or a host of other health issues.
As former First Lady Rosalynn Carter once said, “There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
For the last 10 years, Howard Butcher, UI associate professor of nursing, has been researching how journaling can help improve the health of family caregivers. His work has shown that journaling for 20 minutes, three times a week, about one’s innermost thoughts and feelings about the caregiving process can improve mental health and lower the levels of cortisol, a stress hormone that relates to immune system function.
Journaling has also proved beneficial for people suffering from illnesses or chronic pain. It’s inexpensive, easy, and doesn’t take a lot of time. As Butcher says, “All you need is a piece of paper and a pencil.”
To receive the most benefit from journaling, Butcher recommends:
For more information about journaling for family caregivers:
Writing to Heal: A Guided Journal for Recovering from Trauma and Emotional Upheaval by James W. Pennebaker
Writing as a Way of Healing: How Telling Stories Transforms Our Lives by Louise DeSalvo
The Writing Cure: How Expressive Writing Promotes Health and Emotional Well-Being by Stephen Lepore and Joshua Smyth