The One Thing Caregivers Tend to Neglect

Johanna Kraus and James Gist, who have two daughters under 8, were avid mountain bikers, campers, and hikers when, in April 2016, Gist, a software developer, noticed he was losing grip strength in his left hand. An MRI revealed a congenital tumor in his spine; the family hoped that removing it would get him back to normal. But following surgery in December, his hand felt even worse, and then he started having trouble walking. Over the next year, as Gist became progressively weaker and sicker, he needed his wife's assistance with dressing, bathing, and getting around.

"I was working full-time, taking care of the girls and the house, and calling doctor after doctor to try to figure out what was happening with my husband," recalls Kraus, 45, a biologist with the U.S. Geological Survey in Fort Collins, Colorado. "I was barely keeping it all together. I snapped at the girls; I snapped at James. I would get this feeling that my vision was narrowing, like when you stand up too quickly and blackness starts coming in from the sides."

A year after his spinal surgery, Gist was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. This degenerative illness affects the motor neurons that control voluntary muscles, slowly eroding the ability to walk, speak, swallow, and eventually breathe. "We went from the terrifying unknown to a grief-filled reality," says Kraus. "But having a diagnosis at least gave us a path forward."

The ALS Association connected Kraus with caregiver support groups and helped her figure out ways to make their home more accessible, like installing an elevator. Gist was put on palliative care, and a certified nursing assistant visited regularly. "The help was wonderful," Kraus says. "But just as we'd start to feel on top of things, something new would happen—for example, James would no longer be able to feed himself, or he'd develop pneumonia."

This March, the curveball was Covid-19. To protect her husband, Kraus focused on avoiding germs—and people. "The idea that our behavior could endanger his life was never far from my mind," she says. When her kids' schools shut down, Kraus added managing learning to her daily chores, which already included ordering medical supplies, attending online doctor appointments, and assisting Gist, who requires 45 minutes of help just to go to the bathroom.

For four years, Kraus has felt pulled in a million directions: "I can't do enough for my kids to make up for the partial loss of a parent. I can't be present for my husband the way he wants me to be." She hasn't been able to work as much as she'd like or do the stress relieving outdoor activities she and her family used to enjoy. "I feel awful for James," she says. "None of this is his fault. But that doesn't make it any easier."

In the U.S., there are an estimated 53 million caregivers like Kraus—people who, in the past year, have been helping an adult (including an elderly parent) or child with special needs. Sixty-one percent of caregivers are women, according to the 2020 Caregiving in the U.S. report from AARP and the National Alliance for Caregiving (NAC). Their average age is 49, and many provide care for four years or more. "That's a long time, considering caregivers spend, on average, 24 hours a week doing things for recipients, on top of everything going on in their own busy lives," says C. Grace Whiting, president and CEO of NAC. Even before the economic downturn, one in five caregivers reported high levels of financial strain as a result of their duties, and many struggle with debt.

Unsurprisingly, caregivers are at increased risk for a host of health problems: depression, anxiety, arthritis, headaches, diabetes, back pain, weakened immunity, even cancer. They seldom have time or energy to focus on their own well-being. If they're able to take a break, they may struggle with guilt. And 21 percent say they feel alone, even if they live with the person they're caring for—though social distancing during the pandemic may have boosted that figure even higher, says Whiting.

"The isolation, unpredictability, stress, fear, grief, and guilt are bound to take a toll. And when your well-being suffers, so does that of the person you're caring for," says Amy Goyer, AARP's family and caregiving expert and the author of Juggling Life, Work, and Caregiving. "When you're tending to yourself, you function more effectively and are far more equipped to handle the emotional and physical demands of tending to someone else."

If you're providing unpaid help to a loved one—whether you've been doing it for years or you started during the coronavirus outbreak—it’s crucial to make sure you're not neglecting your own mental and emotional health. Here are eight ways to look after yourself.

Accept the role.
Claiming the ID of caregiver is like earning a new title at work. "It validates the extra responsibilities you're taking on," says Goyer. Owning your position is especially important if you were unexpectedly thrust into it (as many of us are). "Ownership gives you a sense of control, which can help reduce stress," she says.

Redefine success.
Setbacks are inevitable, so it's important to think realistically about what you can achieve. You likely can't prevent gradual deterioration, accidents, or symptom flare-ups—or aging in general. "I took care of both my parents as they got older, and if my mom fell or I couldn't make my dad better, I felt like a failure. That mindset didn't help any of us," says Goyer. "I realized that a better benchmark of success was simply not giving up. I knew I could do that. And it made me feel good to acknowledge that by showing up and doing the hard work, I was succeeding."

Don't dwell (too much) on the negative.
"Training yourself to see the good things, whether it's a pleasant interaction with your elderly mom or the flowering tree outside her window, can help balance the emotional scales," says Liz O'Donnell, founder of Working Daughter, an online community for women caregivers. She suggests setting a timer for five minutes at the end of the day, writing down things you're grateful for or that you did well, and then reflecting on how that makes you feel. Research shows that finding the positives, especially during difficult times, can enhance well-being, enrich relationships, reduce depression, and improve sleep. Not a journaler? Visit the Greater Good Science Center's thnx4.org to register for a gratitude challenge that sends you friendly daily reminders to count your blessings.

Look forward.
Think about what you want your life to be like when you're done caregiving, suggests O'Donnell. When her parents were both diagnosed with terminal illnesses on the same day, she initially felt obligated to give her entire life over to them. "Then I realized that my happiness depended on maintaining a loving daily connection with my husband and kids, and keeping my job. So I talked with my family about my caregiving responsibilities and how we could make the situation work for all of us, and I asked my boss about adjusting my availability. The juggle was still a challenge. But maintaining the things that mattered to me made my life feel more balanced." You have the right—and the responsibility—to grow, learn, and fashion a better future for yourself.

Create a sanctuary.
Whether or not you share a living space, too much togetherness with the person you're caring for can make it feel like the walls are closing in. You may need to get creative in finding a metaphorical room of your own. You could plant an indoor or outdoor garden, or designate a corner of your house for hobbies or catching up with friends. If you use that space exclusively to let go of stress, you'll begin to connect it with a feeling of relaxation and get a quick hit of ease just by stopping by. You can also take advantage of the time when your loved one is sleeping or being tended to by someone else to disappear into a book or a movie—or even a "vacation" via Airbnb's Online Experiences, where you can, say, learn about bees from a Portuguese beekeeper. "Brief escapes to another world can be surprisingly refreshing," says Goyer.

Meet your grief.
"Caregivers are often in the process of losing someone they love, and that sadness adds to the emotional burden," says O’Donnell. What's more, the pandemic has amplified that sense of loss because we're all grieving for the way our lives used to be. By using self-compassion, you can ease your way through sorrow and find comfort at the same time, says Kristin Neff, PhD, an associate professor of educational psychology at the University of Texas at Austin and author of Self-Compassion: The Proven Power of Being Kind to Yourself. She suggests this brief meditation for recognizing and getting through hard times: In a quiet moment, sit and think about your grief. Feel the emotion in your body. Say to yourself, "This is really hard right now, but grieving is a part of being human." Put your hands over your heart and say, "May I care for and comfort myself in this moment" or "May I hold my grief with love." Then just breathe.

Acknowledge when you're not okay.
"It's normal to feel anger and frustration over the fact that your life isn't what you thought it would be," says Whiting. Try to find healthy ways to cope, since research suggests that overtaxed caregivers can be at greater risk for problematic alcohol use and weight gain. Kraus has learned to rely on psychotherapy sessions and support groups. "I love being able to talk things out with people who understand what I'm going through," she says.

Recognize signs of depletion.
Red flags include losing your temper, feeling run-down, and fantasizing about escape. Use them as your cue to do something that fills you up, even if it's as simple as playing with your dog. Some pick-me-ups, such as working out, require planning, so ask a family member, friend, or neighbor to help out; having scheduled relief gives you something to look forward to. During more existential crises, try to remind yourself of your deeper values. The Pew Research Center found that caregivers ages 45 to 59 considered 53 percent of their caregiving activities to be very meaningful. When you're personally struggling, thinking about the significance of the work you're doing can infuse it with a sense of purpose—and help you feel proud of your efforts now and in the future, no matter what happens.

Lifelines

It's easy for caregivers to feel alone and overwhelmed, but there are many organizations ready to help. A few worth noting:

Local Area Agencies on Aging (AAA): These nonprofits are designated by states to address the needs of the elderly. Contact the agency in your community to ask about professional help (and a variety of other services) if you're caring for an older person.

Disease-specific organizations: Virtually every major degenerative disease, from Alzheimer's to Parkinson's, has its own advocacy orgs that can put you in touch with support groups, answer questions about the illness, and provide additional resources for you and your loved one.

Wellthy: This org can help you coordinate care and also guide you through tasks like finding an in-home aide or following up on medical bills. A number of companies offer Wellthy's services as an employee benefit, so check whether it’s available through your job; if not, the company has a private-pay option. (wellthy.com)

Eldercare Locator: A service of the U.S. Administration on Aging, this site can connect you to resources for your aging loved one and help you figure out everything from insurance to housing. (eldercare.acl.gov)

ARCH National Respite Network and Resource Center: Locate professionals who can help with caregiving as well as household tasks, and find crisis care services in your community. (archrespite.org)

Caregiver Action Network (CAN): Ask about free resources such as education and peer support. CAN offers pandemic-related advice, too. (caregiveraction.org)

Family Caregiver Alliance: This group offers care planning, wellness programs, respite services, and legal and financial consultation vouchers. (caregiver.org)

View the original story on OprahMag.com: The One Thing Caregivers Tend to Neglect.