Caregivers Need TLC, Too
Amy Goyer distinctly remembers the moment, several years ago, when she pulled out of a Phoenix, Ariz., gas station and noticed how much better her car handled on a full tank after running close to empty.
A few years had passed since she moved there from Washington, D.C., to care for her parents—her mother struggled with health complications following a stroke and her father now has both Alzheimer’s disease and congestive heart failure. That day marked one of many when she felt overwhelmed and depleted by the role.
“I was expecting myself to run just as efficiently without a full tank of gas, letting myself get down to the fumes,” said Goyer, 57, author of Juggling Life, Work and Caregiving and AARP’s family and caregiving expert. “That’s what we do, as women especially, we tend to just keep going.”
Some 43.5 million Americans serve as unpaid caregivers, 60 percent of whom are women, according to a 2015 study by AARP and the National Alliance for Caregiving. However, those numbers are shifting. Among millennials, caregivers are as likely to be male or female, the study found. Still, the average caregiver currently is a 49-year-old woman working outside the home more than 34 hours a week and devoting more than 24 hours a week to caring for a female elder. (Those caring for a spouse or partner devote more than 44 hours a week to them.) Seven percent of caregivers are 75 or older. As baby boomers age, demographic population shifts will put more pressure on fewer family members to care for their elders, according to AARP.
The particular challenges facing female caregivers are among the topics slated for discussion at the May 16 “Breaking Barriers, Changing Futures” health summit, presented by the Coalition for Women’s Health Equity—28 women’s organizations convened by Hadassah that advocate for gender equity in medical care, prevention, research and treatment. The summit is taking place in conjunction with “From Passion to Action: Hadassah Women’s Health and Advocacy Conference” and Hadassah’s National Assembly and National Business Meeting, May 15 to 17, which is bringing hundreds of Hadassah members to Washington.
Caregivers and their advocates achieved critical advances recently with the January passage of the RAISE Family Caregivers Act, which requires Secretary of Health and Human Services Alex Azar to craft a national strategy to help sustain family caregivers. In addition, more than 36 states have passed the AARP-supported CARE Act, which requires hospitals to notify family caregivers when patients are discharged and provide instructions for medical care upon the patient’s return home.
Still, these measures hardly touch the emotional, physical and financial toll of the task.
Over the last two years of caring for her mother, Gerri Baer, 45, put on 25 pounds. It was more than a matter of using food and wine to cope with her mother’s pancreatic cancer, said Baer, a neonatologist in Rockville, Md., with two school-age children. Anxiety-induced insomnia made her too tired to make it to her early morning walks with friends or her yoga class. Soon she was craving sugar for a pick-me-up. “If I didn’t sleep well, it kind of snowballed,” said Baer, who traveled to Raleigh, N.C., twice a month to see her mother during the last five months of her life. Until her recent death, Baer suffered “not only just weight gain, but not feeling well—body parts hurt that never hurt before.” A former competitive runner, Baer said she’s now no longer fit enough to run.
More than 20 percent of caregivers report declining health due to caregiving, according to the AARP 2015 study. The more demanding their role, the more likely they were to report worsening health.
Avoiding burnout is the No. 1 rule for caregivers, said Iris Waichler, author of Role Reversal: How to Take Care of Yourself and Your Aging Parents. Doing that requires setting realistic expectations and watching for signs of distress such as changes in sleep, mood or diet. “Perceive getting help not as a sign of weakness but as a sign of strength,” she said. She suggests talking openly with a trusted person or resource such as a friend, spouse, support group, chat room, counselor or health care professional. Also, make time for joy. That might mean taking a bath or a short vacation. The key, she said, is “creating spaces in your life that nourish you and recharge you—and not feeling guilty about it.”
Jane Heller, 67, of New Preston, Conn., said she was determined to “marry for health” after watching her mother care for both her father, who died of brain cancer, and her stepfather, who suffered from epilepsy. “Little did I know that I was going to fall madly in love with a man with a chronic illness,” said Heller, author of You’d Better Not Die or I’ll Kill You: A Caregiver’s Survival Guide to Keeping You in Good Health and Good Spirits.
Her book’s title comes from the quip she would offer her husband each time he headed into surgery for his Crohn’s disease. She would smile, he would laugh, and she’d head to the car for a good cry. “You learn you’re stronger than you thought,” said Heller, who will be a featured speaker at the women’s health equity summit in Washington. “We are all thrust” into caregiving, “and we accept it, because we love the people we love and want the best for them, but we also have to do the best job for ourselves.” So when someone offers help, Heller said, accept it—specifically, his or her time, so you can get a break.
And when it comes to taking a break, don’t ask for permission, because the patient may not freely give it, advised Leah Eskenazi, director of operations for the San Francisco-based Family Caregiver Alliance. Instead, present your timeout in a firm yet gentle manner and ease the transition to another helper by sticking around until the patient becomes comfortable. Asking a neighbor to get you out for a walk—or getting a dog to require it—can help, Eskenazi said. Even a few moments of going out with a friend to laugh and ease your worry “can change the world for you.”
As Goyer put it, “Be aware of what fills you up.” For her part, it means fitting in a weekly Pilates class and a full eight hours of sleep each night. Little things can help, she said, noting the flowers a friend planted in her yard to brighten her mood.
Goyer’s mother has since passed away. These days, she copes with her father’s decline from Alzheimer’s— which she likened to “Chinese water torture”—by focusing on what’s left instead of what’s lost.
For example, her father, for whom musical theater was a big part of his life, rarely sings anymore, but he loves to hear Goyer and her sister singing, tapping his toes to their voices or shifting his gait to their beat. “So the essence of Daddy being a musical person, that’s still there for me,” she said.
While he now receives hospice care in their home, she still provides him with the little lifts that he loves—his weekly massage and reiki treatment and a regular rinse in their remodeled two-headed shower that causes him to sigh with joy. “That fills his tank,” she said, “and that’s what matters.”
Rachel Pomerance Berl is a writer who also enjoys caring for her toddler.