Caring for a family member or friend with health concerns, illnesses, or special needs can be both rewarding and draining. From new parents to those caring for aging relatives and everyone in between, the role of caregiver is sometimes lonely and exhausting, and often not supported by our institutions and government. The combination of all of these factors can lead to caregiver burnout.
In this blog, MyWellbeing therapist Renee Hereth talks about the physical, emotional, and mental impact of caregiving, how it can lead to burnout, and what those experiencing caregiver burnout can do to prioritize themselves and cope.
Caregiver burnout is the feeling that you have nothing else to give, that you are depleted, and emotionally exhausted when caring for another person or people. It’s common for caregivers to experience depression, resentment of the person they’re caring for, sleep deprivation, mood swings, and more.
“Caregiver burnout encompasses the mental, emotional, and physical aspects of your life that start to become burdensome when you care for other people,” says Renee.
If you feel this way, you’re not alone; AARP and the National Alliance for Caregiving (NAC)’s 2020 Caregiving in the U.S. report found that thirty-six percent of family caregivers characterize their situation as highly stressful, forty percent of caregivers reported being in “high-intensity situations,” and fifty-three percent said they had no choice but to take on the role.
“Caregiving can encompass physical actions such as feeding, bathing, administering medication, and so on,” says Renee, “but it can also include mental and emotional care. Organizing daily schedules and medical appointments, managing someone’s household or finances, and supporting the emotions of the person requiring care; their moods, depression, anxiety, and ability to communicate. All of this has an impact on the caregiver.”
Unpaid caregivers, also known as family caregivers or informal caregivers, provide aid to at least one relative or friend who needs assistance due to a disease, disability, or other condition. Today, one in five Americans—about 53 million people—is a caregiver, and that number is on the rise.
“You can experience caregiver burnout in all sorts of relationships,” says Renee. “Being a parent, caring for a family member or friend who has medical needs, or caring for someone who is at the end of their life are all examples. This can happen with parents caring for children, spouses caring for their partners, children caring for their parents, or any other relationship where one person is caring for someone else in their life to the extent that the act of caring for that person is a burden or has a negative impact on the carer.”
“You can also experience it in caregiving occupations, such as healthcare workers,” says Renee. “This can include therapists, social workers, nurses, teachers, and other helping professions, which is where the term ‘burnout’ actually came from.”
Additional risk factors include:
“A lot of my clients are what I call the ‘sandwich generation,’” says Renee, “which means they’re adults who both have small children and care for their aging parents, which can be extremely stressful and very difficult as the caregiver tries to navigate the ever-changing dynamics.”
“When caring for aging parents, there’s a shift in roles from being cared for as the child to becoming the caregiver, and what my clients find is that sometimes, their aging parents are not on board with this change in dynamics. With these clients, a lot of our work centers around creating those new dynamics and defining those new roles and we often use roleplay to help them practice the new communication tools they need to navigate these relationships.”
There are a number of factors that can lead to caregiver burnout, including:
Because caregivers are often so immersed in their role, it can be difficult to see symptoms as symptoms. But there are a few things to keep an eye out for.
“One big thing people can look out for is if they see themselves as nothing else but the caregiver,” says Renee. “So say you are caring for a spouse, if you begin to see yourself as only a caregiver and no longer a spouse of the person you’re caring for, that can be an indicator of burnout. You’re losing your identity as a spouse or parent or friend or child and only seeing yourself in a relationship with the person you’re caring for as their caregiver. Losing that former identity is often the first glimpse into caregiver burnout.”
“Another indicator of caregiver burnout is when you don’t know what to do in your own time and space,” says Renee. “When the person you’re caring for is not present or you do get a break or even a moment where you’re not acting as a caregiver, do you feel as if you have an identity outside of that? If you do have that non-caregiver identity, do you enjoy it? Or do you spend your time worrying about the person you care for or not trusting others to care for them? Something as simple as taking a walk or even taking a shower can be hard for someone with caregiver burnout if intrusive thoughts and anxieties are present even when the person they care for is not there.”
These are just some common symptoms, but it’s important to both know the warning signs of caregiver burnout and to seek help whenever you feel like you might need it, regardless of whether you’re experiencing a certain set of symptoms.
“I first try to understand all of the symptoms that they’re feeling,” says Renee. “How is their sleep? Are they experiencing symptoms of anxiety or depression? Are they feeling hopeless or helpless? Are they neglecting their own needs, as in not eating right, not enjoying things that they used to enjoy, not prioritizing themselves? I try to understand where those variables sit for them and in their relationship as a caregiver, because each client is unique and our work together is going to be tailored to their situation.”
“Feeling guilt is another common experience for caregivers,” says Renee, “so if you feel guilt, you are definitely not alone. It’s important to work through where that stems from. Often caregivers feel guilty when they think they aren’t fully meeting the needs of the person they’re caring for, so finding out how this manifests itself can help. For example, some of my clients have trust issues, in that they find it hard to trust someone else to help with caregiving duties but also feel guilty that they struggle to handle it all on their own or that they even want help in the first place.”
“So together, we’d work on interventions and tools to alleviate some of that guilt. Maybe we would figure out a way to make the client comfortable with sharing the caregiving duties with another person by creating a communication plan or leaving post-its around the house to remind someone else what needs to be done.”
“Have something to look forward to in the future,” says Renee. “As a caregiver, things rarely happen on a whim. So putting something on the calendar and saying in two weeks, I’m going to go to lunch with a friend or this Friday I’m going to go see a movie and having a plan in place to make that possible is important to set boundaries and prioritize yourself.”
“Self-care doesn’t have to be a big, time-consuming, expensive act,” says Renee. “Even something as simple as taking an extra-long shower, making your favorite meal for yourself, spending five minutes outside, or even walking a little slower when you go get the mail can all give you little breaks and self-care moments throughout the day.”
Make a list of ways that others can help you, and let the helper choose what he or she would like to do. For instance, a friend may offer to take the person you care for on a walk a couple of times a week. Or a friend or family member may be able to run an errand, pick up your groceries, or cook for you.
Stay connected with family and friends socially as well. Let them know if you want to talk about your recent struggles and would like a caring ear or whether you would like to focus on something different and fun for a while. Set aside time each week for connecting, even if it's just a walk with a friend or a phone call with a family member.
Don’t take on additional responsibilities outside of work, caregiving, and self-care. Things that will drain you even further can move down or off the list of priorities.
“Joining a support group of people who are going through a similar situation can be really helpful,” says Renee. “Not many people will understand what it’s like to be a caregiver for someone with dementia, for example, until they go through it themselves. So having that sense of community and a support system can be so powerful.”
Nearly 60% of caregivers work outside of the home. If, like many caregivers, you work outside the home in addition to your caregiving duties, talk to your human resources department to see if you are covered under the federal Family and Medical Leave Act, which would enable you to take up to twelve weeks of unpaid leave a year to care for relatives.
Figure out what coping tools work best for you; when it comes to this, your therapist can help.
“If you’re caregiving for an aging parent, for example, when you become frustrated when they don’t understand what you’re saying or they don’t recognize you when you walk into the room, what coping strategies do you have in place? That can be heartbreaking for the caregiver, so how can you support yourself so that you can continue doing what you need to do and not just survive, but thrive and even find joy in the present moment?”
“If the shoe was on the other foot and the person you care for was caring for you, would you want them to take time for themselves and enjoy doing things that they enjoyed before they became a caregiver?” says Renee. “Often the answer is ‘of course.’ So above all, allow yourself grace and kindness. Remember that you can’t pour from an empty cup. To be the best caregiver you can be, you have to care for yourself first.”
Caitlin is an organizational change strategist, advisor, writer, and the founder of Commcoterie, a change management communication consultancy. She helps leaders and the consultants who work with them communicate change for long-lasting impact. Caitlin is a frequent speaker, workshop facilitator, panelist, and podcast guest on topics such as organizational change, internal communication strategy, DEIBA, leadership and learning, management and coaching, women in the workplace, mental health and wellness at work, and company culture. Find out more, including how to work with her, at www.commcoterie.com.