By Tara Bracco
Caring for a loved one with a chronic, invisible disease can be a difficult process. For caregivers, also known as care partners, it can be a balancing act to give their loved one the level of care they need and keep up with their other obligations. Responsibilities increase, adjustments need to be made, and disruptions to daily life happen.
No matter the relationship—spouse, domestic partner, roommate, parent, child, sibling or friend—being a care partner can take a toll. Stress, anxiety, burnout, and fatigue are commonly experienced by people in caregiving roles. Guilt and resentment can further strain the relationship. A 2020 report by the National Alliance for Caregiving and AARP revealed that 23% of unpaid family caregivers in the United States find it difficult to take care of their own health with 70% of these people experiencing high emotional stress.
Self-care tips can be hard to generalize since different things work for different people and everyone has a unique situation. But there are some common themes that care partners mention when they talk about their experiences. Four care partners shared their self-care activities in hopes that their experiences may spark helpful ideas and options for others.
Build mental well-being
Mindful meditation is a daily practice for Shirley Kessel, executive director of the nonprofit organization Miles for Migraine, and she credits meditation with helping her the most. Shirley’s chronic migraine began in her 20s, and she’s a care partner to her two adult daughters who live with migraine disease. Shirley practices radical acceptance—the belief that it is vital to accept the facts of your present situation, no matter how difficult or unfair it may be—but says it’s not a cure-all. “It’s not for everyone. It’s what worked for me.”
For 77-year-old Faye Brehm in Northern California, positive self-talk is helpful. Faye lives with her adult daughter, Heidi, who has chronic migraine. While Heidi can care for herself independently, Faye offers support by shopping or doing dishes. However, it isn’t always easy for Faye and it can be difficult to know where the boundaries are. “The quiet sound you think you’re making is a loud sound. I’m not always as quiet as she would hope,” Faye says. “I can get my feelings hurt when I know that I’m doing something that hurts her.” Faye then reminds herself not to take things personally.
Get moving & get outside
Having good self-care strategies applies to both parties in the relationship, and some activities can be done together. Exercise, including walking, hiking, or practicing yoga can reduce stress and build connections.
Kat Cicco, a 40-year-old stay-at-home mom in Northern Virginia, is part of a friend circle that cares for her long-time friend Katie Golden, who lives with chronic migraine. When Katie visits from Los Angeles, they’ll do yoga together or go for a drive to help Katie decompress.
Even though Kat is the care partner, she describes her time with Katie as an emotional and spiritual support for her too. They’ll even take out a telescope and look at the stars. “It’s like we’re kids when we get together,” Kat says.
Take some quiet time
Quiet time is also a restorative way to share space with your loved one. Just sitting silently and being present in a quiet room together can be a bonding experience.
There are also quiet, calming activities—like crafts and painting—that you can do alone or with people. “The projects are fun because every time you look at it, it reminds you of doing that together,” shares Kat who has even made wands, candles and blankets with Katie.
Find your fun
Since not every self-care activity will work for everyone, a good goal is to find what you like and integrate it into your day.
Shirley watches funny shows on Netflix while exercising on her elliptical machine. “Comic relief is huge, so I make sure that’s happening on an almost daily basis,” she says.
Malcolm Herman agrees that it helps to have a sense of humor. Malcolm, a lawyer living in Tucson, Arizona, has been a care partner for his wife for 25 years following a car accident that left her in chronic pain. He enjoys the radio, so he put one in every room of their house. “I don’t meditate,” he says. “I use the BBC.”
Prioritize your own health
Malcolm works with the U.S. Pain Foundation as the director of the National Coalition of Chronic Pain Providers and Professions and as co-facilitator of a support group for care partners. He says working together with your partner is important because their well-being affects you. “The more the person with pain is taken care of, the better it is for you as the partner.”
When it comes to overall self-care for care partners, it’s important to remember the first rule is to take care of yourself. “Put your own oxygen mask on first,” Shirley says.
The experienced caretakers suggest knowing what you need in terms of routine and your boundaries. Consider joining a therapy or a support group for partners of people with chronic pain. Get involved in activities you enjoy, and try to let go of the guilt that can come up when you do something for yourself.
“You’ve got to take care of yourself as a caregiver,” Herman says. “You can’t sacrifice all your life.” •