In January 2020, her father was diagnosed with advanced esophageal cancer, so Pong did what she felt she needed to do: She moved back in with her parents and took on a new role as her father’s caregiver. She shared caregiving duties with her mom — Pong handled the daytime, while her mom was on call in the morning and night — and the two cared for him around the clock: feeding him through a feeding tube every few hours, checking his vitals, and giving him massages to make him feel comfortable. “There was a lot to do — on top of the emotions of what was going on with him being my dad,” Pong says. Burnout set in after learning the cancer was terminal in July. “I felt irritable a lot and was emotionally and physically exhausted,” Pong says. “I also had a withdrawal from friends and didn’t want to really talk to anyone.” The burnout lasted until her father passed away in September of that year. “I felt depleted toward the end,” Pong says. “It was really hard seeing him deteriorate and knowing we couldn’t do anything — and not knowing how long it would go on.”
What Is Caregiver Burnout?
Pong didn’t realize it at the time, but she was experiencing caregiver burnout. “Caregiver burnout often looks like an extended period of depression, where numbness or panic start to set in, and you feel like trying to improve your situation would be futile,” says Laurel Wittman, a former caregiver based in Falls Church, Virginia, and president elect of the Well Spouse Association, a nonprofit that provides resources to the partners of people with chronic illness or disability. But Wittman and many others say responsibilities like caregiving can definitely lead to burnout. Burnout is different than feeling stressed about caregiving responsibilities or grieving because it’s often accompanied by a feeling of numbness, Wittman says. “It becomes an absence of emotion — a feeling of being beaten down by circumstances so thoroughly, or so often, that you aren’t able to get back up,” she says. “It can feel like being disconnected from your life.” Not everyone experiences caregiver burnout the same way or at the same time. It can happen when caring for someone with a very challenging diagnosis (like in Pong’s case); or it can happen when you’re caring for someone with a less challenging diagnosis, too. “It hits people at different times or care stages,” Wittman says. “One danger zone is when caregiving goes on for days and months and years without end and you can’t step away from it and you are getting little appreciation for it.”
What Causes Caregiver Burnout?
When someone becomes a caregiver for an ailing family member or friend, it’s oftentimes very disruptive to that person’s life, says Cassandra Aasmundsen-Fry, PsyD, a clinical psychologist with Mindwell Modern Psychology and Therapy in Kuala Lumpur, Malaysia. “The entire focus of their life suddenly and dramatically shifts to accommodate both their trauma and grief, as well as to address the needs of their loved one.” In some cases the person receiving care may be resistant to the help or angry about their situation, and they take that anger out on the caregiver, Wittman says. “This is really common and makes a difficult experience even more painful and isolating,” she says.
Confusion over how to separate the role of caregiver from other rolesHaving expectations that are different from reality, something that can happen when caregivers try to positively affect the patient, which may be impossible if dealing with a progressive disease such as Alzheimer’sLack of control over finances, resources, and skills needed to help the loved one
How You Know You’re Experiencing Caregiver Burnout
Because burnout is associated with disengaging and feeling discouraged, it can be difficult to identify, Wittman says.
A change in attitude from feeling loving to feeling negative and unconcernedWithdrawing from friends and familyLosing interest in things you previously enjoyedFeeling crabby, hopeless, helpless, and exhaustedChanges in eating habits and body weightDifferent sleep patterns. According to a study published in May 2020 in the Journal of Gerontological Nursing, caregivers of family members with dementia had difficulty falling asleep and lower sleep quality.Feeling under the weather or getting sick often
Wittman says your self-esteem may also take a hit, and you may stop feeling good about yourself and proud of what you’re doing. You may feel alone, like you’re the only person in the world dealing with a situation like this. At the same time, you may feel like you can never actually be alone and by yourself, even for a brief break, she says. Learn More About Unusual Signs of Burnout
How to Cope With Caregiver Burnout
If this sounds like something you’re going through, there are steps you can take to recover. “Fortunately, there are ways to set limits and boundaries while honoring your desire to care for your loved one,” Dr. Aasmundsen-Fry says. Here are six things that can help:
Join a support group. “Find a community of caregivers,” Wittman says. Her organization, Well Spouse Association, is one such group for spousal caregivers. Pong joined Facebook groups that were focused on cancer and esophageal cancer (the type of cancer her dad had). “Being able to talk to people and post about your struggles and asking how to handle certain situations — it was really helpful for me to connect with other people who were in similar situations,” she says. “This was the best thing that helped me get through a lot of difficult times.”Give yourself permission to feel what you’re going through. You may experience negative feelings — that’s normal and does not mean you’re a bad person.“Being a caregiver, you always think you need to be strong for your loved one, but it’s important to allow yourself to feel the emotions and not push them away,” Pong says. “Be strong in front of them, but allow yourself to cry, be angry, or feel whatever emotions in private.”See a therapist. Aasmundsen-Fry recommends seeing a therapist to help you cope with the stresses of caregiving. It can help whether you are already burned out or on your way to being burned out. Pong received counseling in the months leading up to her father’s death, which she says helped her process emotions and deal with stress.Remember your role outside of caregiving. Whether you’re the person’s spouse or child, it’s important not to abandon that role. “I realized I wasn’t making time to hang out with [my dad],” Pong says. “I was a caregiver, but I wasn’t being present and with him as a daughter.”Prioritize self-care. “Self-care is necessary, even when it’s hard,” Wittman says. Find what works for you and make time for it. Pong and her mom went on daily walks, which helped to get away from her dad’s situation for a little bit. Practicing mindfulness may also help. A small study published in September 2019 in Community Mental Health Journal found using web-based mindfulness exercises twice a day for 10 minutes helped caregivers helping people with physical illnesses cope.Consider outside care. If you have the means, consider outsourcing the caregiving responsibilities. Assisted living facilities, adult day care, and home health services are good options.Pong’s family had a caretaker come to their home during the last week of her dad’s life. “Getting another caregiver at the very end was really helpful,” she says. “My mom and I were able to enjoy the time with him versus having to be helping and be on.”Take something off your plate. Learning to say no and delegating responsibilities when possible can help, Aasmundsen-Fry says. A review published in November 2018 in Health Psychology Open found focusing on reducing the burden of caregiving (such as by reducing work hours, using paid caregivers, and lowering expectations of the person caring for) was more successful than emotion-focused coping (such as avoidance or wishful thinking).
RELATED: Tips for Coping With Burnout When You Can’t Just Walk Away It’s been a year since Pong’s dad passed away, and she admits things are still hard. “I go through waves of being mad that he left me and confused that this is all happening and that I’m never going to see him,” she says. “It’s a rollercoaster.” She’s now focusing on herself and building her online travel coach business Come Along With Pong, which helps people quit their jobs and travel the world like she’d done before her dad got sick. “It’s a way to distract me but also to hold onto hope and be excited for something,” she says. “I’m grateful I have my business to focus on during this time.”
