Two years after moving back to her home state of Florida to become the primary caregiver for her elderly dad, Theresa Wilbanks looked in the mirror one day and didn’t even recognize herself.
“Dad and I had a great relationship, but it was rapidly deteriorating. I had become angry and resentful and burned out from prioritizing his well-being over mine,” Wilbanks recalls.
During her seven-year caregiving journey until her dad passed away at age 99 in 2020, Wilbanks started a journal that she turned into a guidebook, “Navigating the Caregiver River: A Journey to Sustainable Caregiving.”
“I wanted to share what I learned along the way to help other family caregivers. My goal was to give others the tools and strategies they need to avoid burnout and discover a more sustainable way of caregiving,” Wilbanks explains.
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What Is Caregiver Burnout?
Caregiver burnout is an often overlooked but growing concern, as highlighted by a 2023 AARP survey. The study revealed that about half of the 1,001 adult respondents reported increased emotional stress, with more than a third (37%) experiencing physical strain from their caregiving duties. Younger caregivers under 35 reported the highest levels of anxiety, while women reported greater emotional distress than men. Shockingly, almost 4 in 10 caregivers admitted they rarely or never feel at ease.
Caregiver burnout goes beyond stress. It encompasses emotional numbness, a loss of perspective and physical exhaustion, which can result in long-term health problems, including depression, anxiety, weight changes and weakened immune system. This burnout not only affects the caregiver’s well-being but also puts the loved ones they care for at risk, as it diminishes the caregiver’s physical and emotional capacity to provide proper care.
“A continuous ‘fight or flight’ state can result in burnout and a lack of emotional engagement,” explains Dr. Susan Wehry, associate clinical professor of geriatrics at the University of New England College of Osteopathic Medicine in Portland, Maine.
To prevent burnout, she stresses the importance of building a support network and recognizing when it’s time to ask for help.
“Caregiving can be a challenging experience, but it is also full of many rewards when caregivers find strategies to help them better cope.”
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Signs of Caregiver Burnout
Burnout takes various forms among caregivers, but generally includes a mixture of physical, emotional, cognitive and behavioral symptoms, including:
Physical symptoms
— Loss of appetite
— Body aches and pain
— Frequent sickness
— Insomnia
Emotional symptoms
— Anger
— Anxiety
— Sense of feeling overwhelmed
— Suicidal thoughts
Cognitive symptoms
— Decision fatigue
— Forgetfulness
Behavioral symptoms
— Ignoring personal needs
— Increased reliance on substance abuse and alcohol
— Retreating from personal connections
[READ: Common Caregiving Tasks to Do for Your Older Loved One]
How to Prevent Caregiver Burnout
Follow these tips to keep caregiving burnout at bay.
Advocate for yourself
Wilbanks stresses the critical need for caregivers to establish clear boundaries in order to maintain their well-being and prevent burnout. Throughout her experience, she learned to delegate common caregiving tasks
— like laundry and errands — to caregiver aides. These professionals became like family, yet she had to limit her social interactions with them so that they could complete their work.
She also emphasizes the importance of setting boundaries with siblings, even in the absence of conflict.
“While I didn’t have any disagreements with my brother, it’s essential to establish boundaries with siblings to maintain harmony and ensure the caregiving process runs smoothly,” Wilbanks says.
Caregivers also need to place high importance on communicating with their support network, says psychologist Deborah Derrickson Kossmann, author of a memoir, “Lost Found Kept.”
“Caregivers need breaks. They need someone to vent to and help find resources. Maybe their long-distance relatives could come visit for a week every few months to give the caregiver a break. Or perhaps an out-of-state sibling could manage the finances while the family nearby deals with doctor appointments and grocery shopping,” Kossmann says. “Recognize your own caregiving limits and be able to negotiate clearly with your support system for the assistance you need to help do the job.”
Ask for help
Many caregivers think that they can do it all and they don’t need help. Looking back at his 18 years of caregiving to his wife, Elaine, who passed away from Alzheimer’s disease in 2022, former Wisconsin Governor Marty Schreiber admits that he should have asked for help much sooner.
“That was one of my biggest mistakes I made,” says Schreiber, author of “My Two Elaines.” “I learned the hard way and eventually started asking my kids for more help. When my daughters and their families, who lived out of town, would come visit instead of entertaining them I would ask them to watch their mom while I took a much-needed break. I also recruited friends to help by sitting with Elaine for a few hours or bringing over a meal.”
To make it easier for caregivers to schedule help from family and friends, there are several online tools worth checking out, including:
— CareCalendar
— CaringBridge
— Caring Village
— Give Inkind
Area agencies on aging (AAAs) are known for connecting seniors with helpful resources, but they also provide support for caregivers of older adults and people with disabilities. You can find your local AAA by visiting eldercare.acl.gov.
Find peer support
Caregivers often find comfort within their families, communities and faith groups. However, caregiver support groups can help people connect with others who share similar experiences and be beneficial, even for those who aren’t naturally inclined to join them.
“I’m not a joiner by nature, but joining a local Lewy body dementia support group was one of the best things I ever did. These groups allow caregivers to connect with others who share similar frustrations, learn coping strategies, and realize that their experiences are not unique,” says Mary Lou Falcone, author of “I Didn’t See it Coming.” Falcone was inspired to write her memoir after her late husband, illustrator Nicky Zann, was diagnosed with Lewy body dementia in 2020.
Jerry Bishop, chairman of the Well Spouse Association, a national group that provides education and support to spousal caregivers, has been leading a support group for four years and has been part of one for more than two decades.
“Think of support groups as a lifeline,” says Bishop, who cares for his wife Cindy, who has been living with multiple sclerosis for more than 30 years. “Knowing you’re not alone makes a huge difference.”
Adopt self-care routines
Self-care is key when caregiving. Wilbanks embraces daily meditation and breathing exercises during her caregiving years.
“Whenever I would slip backwards, I would realize that I needed to stick with my meditation schedule, even for five minutes on a busy day. I found that it helped fill up my compassion reserves and made me more patient with my dad.”
Despite caregiving challenges, Bishop recharges by occasionally camping with friends on weekends.
“It’s good to step away and reset,” he explains. “If you can take five minutes just to do breathing exercises or have coffee with a friend. Connect with others in similar situations. Remember to take those moments for yourself. They keep you going.”
Managing Caregiver Burnout
Once burnout begins, caregiving experts recommend a combination of strategies to maintain physical and emotional well-being. Here are some effective ways to manage burnout:
Release the stress
Caregivers may need to release pent-up stress during moments of intense pressure.
Some caregivers sometimes resort to yelling in the shower to let go of built-up energy. Others might count to 10 before responding or find relief in punching a pillow out of view. Swearing can also serve as an emotional outlet for some.
“As unconventional as it may seem, yelling the ‘F’ word into a pillow in private provides a release that ‘heck,’ ‘darn,’ or even ‘damn’ just can’t match,” Falcone says. “Letting moments of frustration emerge in private protects loved ones from the raw emotions that come with caregiving’s toughest moments.”
Swearing can assist individuals in processing and regulating intense emotions more effectively, according to researchers at Ulster University in Northern Ireland, published in Lingua in October 2022. Swearing is believed to trigger a stress response that assists in managing extreme feelings.
Focus on the positive
Caregiving is often associated with the negative emotional and physical toll, but there’s also positive impacts, including affection from care recipients, stronger relationships and closer bonds from the wider community.
Wehry recommends focusing on “three good things,” an approach developed by psychologist Martin Seligman, considered the “father of positive psychology,” that encourages people to take time at the end of each day to write down three positive things. As a result, this helps boost happiness. Scientists at Duke University later adapted this research and developed well-being tools.
“We often hear from both busy professionals and exhausted caregivers that they don’t have time for themselves,” Wehry says. “But these tools are free, accessible on mobile devices and easy to incorporate into a daily routine.”
Stay healthy
A familiar piece of advice for caregivers is the importance of prioritizing their own health to ensure they remain effective in their role. This guidance is grounded in research, which highlights the significant physical and emotional toll caregiving can take, potentially affecting both health and longevity.
For example, a 2018 study, published in Alzheimer’s & Dementia, found that 18% of caregivers for spouses with Alzheimer’s disease passed away before their loved ones.
Caregivers often find it difficult to find time for exercise, proper nutrition and stress management. Maintaining a healthy lifestyle can be challenging, but it’s essential for caregivers to seek support from family, friends, neighbors and get help from health care aides.
“When caregivers ignore themselves their health will suffer and that puts them and their loved one in jeopardy,” Schreiber says.
Bottom Line
Caregiver burnout can lead to exhaustion, emotional numbness and long-term health issues, affecting both caregivers and the loved ones they care for. To prevent and manage burnout, experts recommend setting clear boundaries, asking for help, finding peer support, practicing self-care routines and focusing on the positive aspects of caregiving, such as the sense of purpose it can bring. Additionally, caregivers should focus on finding ways to release their stress and using tools that help manage stress and maintain well-being.
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Caregiver Burnout and Strategies to Help originally appeared on usnews.com
