Once a quarter, Bich Le, 52, travels from her home outside of Minneapolis to St. Augustine, Florida, where she moves into her father’s guest room for three weeks.
The health care executive is one of five siblings who take turns caring for their widowed 90-year-old father, who has lung cancer and requires constant assistance. While she’s in Florida this month, she will miss her daughter’s final high school prom; she missed it last year, too, due to her caregiving duties.
The drugs Le’s father takes to manage pain can “negatively impact how he treats people,” she said. When he becomes volatile, Le said, she mostly tries to ignore it and “not add to the stress of the situation.” She tells herself to “just care for him and just let it go.” But sometimes, when she’s exhausted, his temper grates.
“What runs through my brain is: ‘A simple thank you would really go a long way,’” she said. “‘You have me, or you have a nursing home.’”
Caregiving can be fraught for the estimated 53 million Americans who assist family members and friends. And factors like financial strain and isolation can add to psychological distress. In a 2017 survey of 1,081 caregivers conducted by AARP, 51% of respondents reported feeling worried or stressed. But there was a surprising upside: The majority — 91% — also reported feeling pleased that they were able to help.
How can caregivers hold on to that feeling amid the stress, fatigue and resentment that also come with the role? There are strategies for feeling “less burdened or stressed by the daily problems” they encounter, said William Haley, a professor of aging studies at the University of South Florida.
Le, for example, makes time every day to laugh with her siblings about the more absurd moments of caring for her father. “You kind of have to take it with some humor,” she said, “because otherwise I think you’d just be in the fetal position.”
Forget self-care. Prioritize your basic needs
Bone-tired caregivers often field unrealistic suggestions to do something indulgent for themselves: Book a spa treatment, take a yoga class or a weekend trip.
“Somebody saying, ‘You need to take care of yourself’ suggests that person doesn’t actually know what it’s like to be a family caregiver,” said Anne Tumlinson, a health care consultant from Washington, D.C., who founded The Daughterhood, a free online community for caregivers. “As a practical matter, there’s only so much you can do.”
The Rev. Nicholas Sollom, a chaplain at Yale New Haven Hospital in Connecticut, isn’t a fan of any relaxation rituals that create new tasks. Instead, he advises caregivers to keep their routines as simple and sustainable as possible: “Make sure you got enough sleep; make sure you’re eating; make sure you’re staying hydrated,” he said. It sounds simple, but these are the things that often get overlooked when you’re focused on someone else’s survival.
“It’s all super basic to just being alive,” he added, but these few things “can be a game changer” for maintaining energy.
Seek support and services
Without robust government support and resources, most U.S. caregivers have to figure things out on their own, Tumlinson said. And on top of overseeing another person’s health, housing and finances, she said, many caregivers have to navigate complex family dynamics when their siblings, spouses or parents become dependent on them.
“There comes a point where every caregiver goes, ‘Oh, I’m on another planet now,’” she said.
Yet the more you can educate yourself about your loved one’s illness — and find practical and emotional support — the less likely you are to feel overburdened, Haley said. He recommended contacting your local area agency on aging, a state-designated nonprofit that provides free directories for services that address the needs of older people. Through these organizations, you can explore resources such as adult day care services and Meals on Wheels.
Geriatric care navigators with experience helping families find services and make caregiving plans can also help prepare you for challenges you might encounter, such as getting expenses reimbursed by Medicare. They can be hired short-term for planning or on an ongoing basis to oversee care. Care navigators can be costly, but if the person needing assistance has long-term care insurance, the expense may be partly covered.
Working with a therapist can help you develop coping skills, and support groups run by many disease organizations, including the Alzheimer’s Association, are also a good place to find information, coping strategies and social connection at no cost.
Many caregivers create their own support networks, said Sollom, adding that it’s ideal to find a crew of low-drama, reliable people “who you know you can call at 4r in the morning.”
Typically, Le said she experiences an 80/20 ratio of positive to negative caregiving emotions. But when she feels herself “edging” toward her 20% zone, she calls close friends to get perspective that pulls her back. Leaning on these people is “really a survival tactic,” she said.
Remember your ‘other’ life
In the thick of caregiving, it’s important to connect with aspects of your life that matter to you, said Allison Applebaum, director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center in New York and author of “Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving.”
Her father, who had Lewy body dementia, was often hospitalized during the decade she cared for him. But as a lifelong ballet dancer, Applebaum realized she could use the bars on his hospital bed to stretch and practice positions, an epiphany that brought her peace during those hospital stays, she said.
If you’re feeling disconnected from yourself, try taking stock of your interests and notice what you’re missing — maybe it’s going to church, golfing or spending time in nature, said Daniel Goldman, a psychotherapist in Madison, Wisconsin.
Scott Klace, 63, has been a primary caregiver for his mother-in-law, who has dementia, since she moved in with him and his wife last year. His mother-in-law recently started attending an adult day care center twice a week. When asked what he’ll do with the free time, Klace initially seemed perplexed: “Maybe take the dog to the park? I don’t even know what I’ll do,” he said.
But the more he thought about it, the more excited he became. “It might be something as simple as going to the movies. I used to go to the movies all the time. I bet I’ve seen two movies in the last one and a half years,” he said.
If you can, put the time on the calendar; actually scheduling a walk or time with friends “puts you on the hook,” making it less likely your plans will evaporate amid daily chores, Goldman said.
If the person you care for can’t be alone, arrange for someone to be with them while you’re away. Ideally, you might find a family member, friend or neighbor who can step in at a set time each week, he said.
Caregivers can also use technology for support, even if they can’t completely step away. Out-of-town relatives and friends can connect with the person needing care via FaceTime or Zoom to give the local caregiver a moment to rest in another room.
Acknowledge the contradictions of caregiving
On a genuinely crummy day, advice to “look on the bright side” might make you want to scream. But tallying up positives can help: A small study from 2017 found that dementia caregivers who were prompted to consider what they gained from their experience described things such as finding purpose and new feelings of mastery. They also experienced fewer symptoms of depression than participants who received only standard education about caregiving skills and dementia symptoms.
Klace, who recently spent several frustrating months trying to reenroll his mother-in-law for Medicare Part B, admitted that caregiving “sucks sometimes; it really does.” But helping in simple ways — paying her bills; making sure she’s got enough to eat — makes him “feel a little better about myself,” he said.
For exhausted caregivers who may not know what they feel, Sollom recommends a brief daily practice: Think of three things that were challenging during the day. Maybe a loved one was denied for a clinical trial, a doctor ignored your concerns, and you got stuck on the phone with an unhelpful bank representative. Then, come up with three things that you’re grateful for: A nurse brought you a cup of tea, you and your loved one took a short walk, and a friend you’ve been missing called to check in.
Taking a wider view helps caregivers become “aware that they’re actually putting their energy into things that matter,” Sollom said.
Frequently, without any prompting, the caregivers he counsels start by listing their burdens and end up expressing gratitude or a sense of accomplishment. “I often wonder if they are consciously doing this,” he said. “Or if it’s more of an unconscious resiliency process.”