5 Common Challenges Care-Givers Face, and How to Handle Them
It didn’t come as a total surprise when Elizabeth Miller’s 76-year-old mom landed in the hospital with serious respiratory problems in the spring of 2014. Her mother had struggled with chronic health issues for years. Even so, Miller, now 48, and her siblings had to scramble to figure out how to care for her. “Most of us lived hours from my parents, so we took turns visiting,” says Miller. She missed her son’s birthday, and had to work remotely. “My boss was understanding. But it wasn’t easy.”
What’s more, the siblings had to take on tasks they had never imagined—giving their mom injections, administering her breathing treatments, rubbing lotion on her swollen feet. Then that summer, Miller’s father developed sepsis after dental surgery and passed away shortly after. “We moved Mom to an assisted-living facility near me in Georgia, but she wasn’t happy,” Miller says. “I felt guilty, and wondered if we were making the right decisions.”
As the months passed, the pressure took a toll. Miller would find herself bursting into tears “at the drop of a hat,” and her doctor increased the dose of the anti-anxiety medication she’d been taking. “Caregiving stress is like the old fable of boiling a frog,” says Miller. “If you put a frog in tepid water and raise the temperature slowly, it doesn’t notice the heat till it’s too late. The stress of caregiving sneaks up on you too. You don’t realize the situation is getting dangerous until you’re at the boiling point.”
That’s an apt characterization, according to a slew of recent studies. And that proverbial frog? It’s most likely a woman. Of the country’s 40 million–plus unpaid caregivers of a person 65 or older, roughly 66 percent are women, many with jobs and kids at home. Despite those responsibilities, they spend an average of 21 hours a week on care—running errands, attending doctor’s appointments, and providing hands-on assistance. As Stanford University researchers wrote in a 2017 paper in the journal JAMA Neurology, “The best long-term care insurance in our country is a conscientious daughter.”
Most caregivers find their efforts meaningful, but it often comes at a personal cost. Caregivers are at risk for a host of health problems, including depression, back pain, arthritis, and heart disease, says Ruth Drew, director of information and support services for the Alzheimer’s Association. “It’s not uncommon for caregivers themselves to wind up in the hospital,” she adds.
But that doesn’t have to happen. Thanks to a growing body of research, the challenges of caregiving are becoming more widely understood. Here are five of the most common struggles women face—as well as effective ways to cope.
Challenge 1: You have no bandwidth for yourself
Let’s do some quick math: 40 (or more) hours of work per week, plus 20-some-odd hours helping a loved one, plus child care equals zero time to take care of you. Sure, you’d love to work out regularly, get plenty of sleep, and cook nutritious meals. It just seems impossible.
But it’s vital to find small, doable ways to keep healthy, says Drew—not just for yourself but also for the person who needs your help: “Many of the women I work with finally start taking care of themselves when they realize their [older relative] would be lost without them.”
When it comes to exercise, remember that short bouts count. “Accumulating physical activity in 5-, 10-, or 20-minute increments adds up,” says Eli Puterman, PhD, assistant professor in the School of Kinesiology at the University of British Columbia. You might stash a pair of sneakers and a yoga mat in the trunk of your car so you can take a quick jaunt around the block or follow a vinyasa flow video on your phone while your loved one watches TV. There are also apps, like Tone It Up and J&J Official 7 Minute Workout, that will guide you through a brief strength routine. Your efforts will prepare your body for the more physical demands of caregiving, adds Puterman: “Helping an adult in and out of bed requires a strong lower back, core, and legs,” he points out.
Eating healthfully doesn’t have to be complicated either. If you buy fresh precut veggies, lettuce, and fruit, along with some canned beans and frozen chicken or fish, you can whip up fiber- and vitamin-packed meals that require little time or effort. And eating well will help you maintain your much-needed energy.
As for sleep, getting a solid eight hours may not be realistic if you’re up in the middle of the night with someone who’s in pain, or who needs to go to the bathroom. But don’t discount the power of naps. Try to snooze when your loved one does, to make up for lost sleep.
Challenge 2: Your nerves are frayed
“Caregiving is a superhuman task,” says Drew. “There’s a sense of urgency when someone absolutely needs your help and attention—so a lot of times the things that fill you up and nourish you are the things that seem expendable.” As a result, you rarely get opportunities to decompress, which can eventually lead to burnout.
Experts say one strategy that may help is mindfulness. “Caregivers are usually worrying about the future or the past,” says Susan McCurry, PhD, a clinical psychologist and research professor at the University of Washington. “Mindfulness is helpful because it brings you back to the present moment, where things are actually OK.” And when you anchor yourself in the now, your nervous system shifts from the sympathetic, fight-or-flight mode to the parasympathetic, rest mode.
There’s even research to back up the benefits of mindfulness: A study done at the University of Minnesota found that this calming approach decreased stress and improved the mental health, mood, anxiety, and sense of burden in women caring for a parent with dementia.
Once you get the hang of mindfulness, you can practice it anytime, anywhere: while you’re sitting in a waiting room or standing in line to pick up a prescription, or when you wake up during the night. Here’s all you need to do, according to McCurry: Bring your attention to your senses—whether it’s the sounds around you or the feeling of your bedsheets against your skin—then turn your attention to your breath. Allow your mind to rest on the sensation of it moving in and out of your body.
Challenge 3 : You’ve lost touch with your friends
Caregivers aren’t just exhausted and pressed for time; they are often isolated because they don’t want to burden other people. “But sharing your thoughts and feelings with supportive friends reduces blood pressure, strengthens immunity, and has beneficial psychological effects, including reduced stress,” says Joan Monin, PhD, associate professor of social and behavioral sciences at the Yale School of Public Health. Having even one person to talk to can positively affect caregivers’ well-being, according to a 2016 study by Japanese researchers.
What’s more, researchers from the University of North Carolina at Chapel Hill and Duke University found that when caregivers stayed engaged with their social support network, their care recipients’ health was better than those being tended by a lonely caregiver. “Having support may help you perform your caregiving tasks more effectively,” explains lead author Dannielle Kelley, PhD.
Ask a friend to come over for tea, or schedule regular phone calls or video chats so you can stay in touch. And find someone, whether it’s your spouse or a respite care professional, to cover for you as often as possible so you can get out of the house for dinner or drinks, or even a weekend away—because, as Monin puts it, “leisure activities are vital for your health and your peace of mind.”
Challenge 4: You’re anxious about money—and your job
According to a 2016 report by AARP, 78 percent of caregivers incur out-of-pocket costs—on average, $7,000 per year. To make ends meet, 30 percent have dipped into their personal savings, 16 percent have reduced contributions to their retirement accounts, and 45 percent have cut back on eating out or vacations. If you’re faced with new costs, it may be worth talking to a financial planner, who can help you budget and, ultimately, feel more in control of your overall money picture.
Job security may be at the top of your mind too, especially if you’re out of the office more than usual. It makes sense to explain your caregiver role to your boss or supervisor, says Nick Bott, an instructor at Stanford’s Clinical Excellence Research Center. Not every employer will respond positively, but if you emphasize how committed you are to your career, you may be able to work remotely or tweak your hours to better accommodate your caregiving responsibilities. Also, if you can afford it, see whether you’re eligible under the Family and Medical Leave Act for up to 12 weeks of unpaid leave each year without losing your job.
Challenge 5: You’re wrestling with guilt
Guilt is common in women who are juggling a career and family as well as caregiving. “They feel like they’re not doing enough—emotionally, physically, or financially. And they beat themselves up for not doing it all perfectly,” says Carla Marie Manly, PhD, a clinical psychologist in Sonoma County, California, who treats caregivers.
A little guilt can push you to do all the tough jobs that caregiving requires. But being too self-critical can increase your risk for depression. So make sure you practice self-compassion.
One easy trick: Shift your focus from what you’re not doing to all the many things you are, suggests Manly. Throughout the day, as you check stuff off your to-do list, take a moment to recognize and celebrate your accomplishments.
Another key cause of guilt, adds Monin, is feeling like your loved one is suffering, despite your efforts. “It may help to realize that caregivers often overestimate their loved one’s suffering and underestimate their actual quality of life,” she says.
It can also help to spend some time with your loved one that doesn’t involve any physical therapy or medications. Miller tried this after her mom moved into the assisted-living facility near her home. “Because I felt like I could never do enough for her, I was resentful,” Miller recalls. But then at a support group for caregivers, someone suggested Miller plan some fun activities with her mom. “We started watching Grace and Frankie together, and playing cards. Rekindling a more normal mother-daughter relationship restored a healthier balance,” she says. “It helped me enjoy our time together—which was a gift.”
Sharing the load
“Many caregivers aren’t good at asking for—and accepting—help,” says Rani Snyder, a vice president at the John A. Hartford Foundation, which gives grants for caregiving research. But if you want to get through it in one piece, you need partners. Here’s how to take a team approach:
Make a list of tasks, and get others on board. “What are the things that only you can do—and what can someone else take on, like housecleaning, lawn maintenance, car maintenance, shoveling snow, grocery shopping, and laundry?” says Drew. Then, convene a meeting with siblings, either in person or on a conference call, and let everyone choose.
Don’t forget to ask for help for yourself. “When my wife’s mom fell ill, we had an uncle who would come by once a week and stay with the kids, which gave my wife time to go to the park or see a movie,” says Steven Huberman, founding dean of Touro College Graduate School of Social Work. Ask for emotional support, too. If you tell a loved one that the thing you really need is someone to listen, most will happily show up—and feel like they’re being useful.
Express your gratitude. Caregiving can be emotionally fraught. Acknowledging everyone’s contributions sets a positive tone, which can go a long way toward relieving stress and avoiding tension and resentment.
These smartphone apps might make your life a little easier.
To help you stay organized… Caring Village lets you coordinate activities like transportation, meal delivery, and errands; store important documents; and manage medications. Another app, called CaringBridge, allows you to update—and receive assistance from—friends and family during a crisis.
To help you provide better care… Need to treat a nosebleed, or a twisted ankle? First Aid: American Red Cross has advice for almost any everyday health emergency, and comes complete with step-by-step guides and videos. If your loved one is in pain, the PainScale app allows you to log and track pain symptoms over time. And eCare21 syncs information like glucose level, heart rate, weight, calorie intake, and sleep from wearable devices like a smartwatch or Fitbit.
To help you feel less harried… Sanvello uses techniques based on cognitive behavior therapy and mindfulness to address stress and anxiety. You should also check out Happify, which offers science-based activities and games to reduce stress, quell negative thoughts, and build resilience. It might have you list things you’re grateful for or notice positive words—all of which can help you think more optimistically.
Caring for someone far away
Long-distance caregiving is its own kind of burden. “You don’t have the daily demands, but the uncertainty and guilt can be tough,” says Sara Douglas, PhD, RN, a professor at Case Western Reserve University’s Frances Payne Bolton School of Nursing. Fortunately, no matter where you are, you can provide indispensable help.
Find a local point person. “Whether it’s a family member, friend, or neighbor, you need someone who can visit your loved one and provide accurate information about key issues,” says Douglas. “Is there food in the fridge? Are they eating? Are they getting to their appointments?”
Ask for assignments. Some examples of things you can do from afar: Pay bills online, arrange transportation, communicate with doctors, create and share a Google Calendar so local caregivers can coordinate meal delivery and taking out the trash, or post updates for family and friends.
Sit in on doctor’s visits remotely. You can use FaceTime or video conferencing. “Most doctors are open to it,” Douglas says.
Time your visits thoughtfully. Arrange them so you can give the local caregiver a break. “Ask when would work best—maybe a time when they can take a vacation,” suggests Douglas.
Consider hiring a nurse, or a social worker. If you can afford the extra expense, a professional caregiver may alleviate some of your worry, says Douglas.
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