Are You Experiencing Caregiver Burnout as a Family Caregiver? Here’s What to Do Next
Providing care to a loved one can be challenging and stressful, and it can take an immense toll on your physical and mental well-being. Here’s how to know if you’re at risk of family caregiver burnout and how to overcome it.
Whether you are taking care of a parent with Alzheimer’s disease or a spouse recovering from a stroke, the responsibilities of being a family caregiver can feel like a full-time job—on top of your regular 9-to-5. It’s also a job that many people already have: Nearly one in five Americans say they are family caregivers, according to a 2020 survey by the National Alliance for Caregiving (NAC) and AARP.
Research also shows that nearly 40 percent of family caregivers of people over the age of 50 report high levels of stress, and 20 percent say they feel alone, according to another 2020 survey co-authored by the NAC and AARP. These feelings are among those that can exacerbate feelings of caregiver burnout.
“I think even family caregivers are shocked to discover the enormous physical and mental toll caregiving can take on them,” says Shadi Gholizadeh, PhD, MPH, Director of Memory Care at TheKey.
But while family caregiver burnout is common, it’s not inevitable. There are things you can do to help slow it, and sometimes even prevent burnout entirely, says Dr. Gholizadeh. First, you have to learn to recognize the warning signs, then find ways to address them. Here’s what you need to know to prevent reaching a breaking point.
What Is Family Caregiver Burnout and What Are Its Causes?
“Caregiver burnout is a state of physical, emotional, and mental exhaustion,” says Linda Ercoli, PhD, Director of Geriatric Psychology-Neuropsychology at the University of California Los Angeles. If you have family caregiver burnout, you may notice that your attitude has shifted from embracing the role of caregiver to having much more negative feelings about it.
“Your ability to do the job with the same vim or vigor has changed,” explains Dr. Ercoli, who’s also a member of TheKey’s Scientific Advisory Board. “You may notice that you’re angry more often or more withdrawn around others. You feel wiped out.”
As a family caregiver, you may not take time to care for yourself, which can affect your overall well-being. In fact, research suggests that caregiving can create its own health problems. A 2022 study published in the World Journal of Psychiatry reports that over 50 percent of family caregivers experience symptoms of depression. The stress of caregiving can also weaken your immune system and increase inflammation in the body, according to a 2019 study published in the journal Gerontologist. As a result, you may find yourself getting sick more often.
“Because you’re not taking care of yourself—you may not get enough sleep or exercise or eat a healthy diet—you’re at a greater risk of developing chronic health conditions, such as heart disease or diabetes,” says Dr. Ercoli. “It’s really important that you address it, because caregiver burnout can harm your health.”
Unfortunately, family caregivers often aren’t able to get the physical and mental healthcare they need. A 2021 survey found that many reported difficulty accessing mental health services, dental services, medications, and other supportive services for themselves due to lack of time or opportunity.
Caregiver burnout can sneak up on you so slowly, you may not even realize it’s happening, says Dr. Ercoli. When you begin to care for a loved one with dementia, they may need help with things like cooking, paying bills, or remembering to take their medications. It can feel fairly manageable at first. But as the person’s cognitive decline progresses, you may also have to provide more personal care support, assisting with bathing, dressing, grooming, and feeding. In many cases, advanced dementia also leads to incontinence and toileting confusion, so you may have to clean up urine and bowel movements (including from bed sheets and bathroom walls), and deal with dementia-related behavior problems such as aggression. By that point, you’ve become so busy and also so mentally and physically exhausted, you don’t have the time or energy to address the burnout you’re feeling.
Common Causes of Family Caregiver Burnout
Role reversal: When you are thrust into a caregiving role for a parent, it can feel very jarring. You’re suddenly changing the incontinence briefs of someone you used to laugh with, look up to, and share your deepest feelings with. Your parent now depends on you for everything, including the most basic functions. “It’s confusing and upsetting, and you may be grieving because the person you had a relationship with may now seem like a child,” explains Dr. Ercoli. “There’s a lack of reciprocity, which makes you feel lonely and alone.”
Money woes: The caregiving role may become so time-consuming that you may have to give up your regular paying job or be unable to work as many hours as you used to. A 2021 report from Fidelity Investments found that over 60 percent of caregivers expressed being occasionally overwhelmed with financial stress. Almost 70 percent said that having a job made providing care very difficult, and 9 percent had to leave their jobs entirely.
Unrealistic expectations: Some family caregivers place unreasonable demands on themselves, which adds to the stress of caregiving. “Sometimes when I talk to family caregivers, they say, ‘I am failing at this,’ when it’s exactly the opposite,” says Dr. Gholizadeh. “They expect that if they provide good care, their loved one will thrive and improve. But if someone has a progressive condition, no amount of love or care can change that.” These unrealistic expectations can also come from other family members who don’t help out, but weigh in with their opinions and suggestions without understanding the reality of the situation, she adds. In addition, many caregivers feel guilty that they struggle with caregiving. “There’s a belief that caregivers should be selfless and not complain about their challenges and struggles,” says Dr. Gholizadeh.
Lack of self-care: It can be difficult, if not downright impossible, to find the time and space to take care of yourself. You are likely so busy caring for your loved one that there’s no opportunity for you to go out for a walk, have coffee with a friend, or spend some quiet time relaxing. It may be hard for you to find respite care, which is a short-term, structured break for family caregivers (more on this below). Or your loved one may resist getting care from anyone other than you. As a result, you find yourself increasingly overwhelmed and exhausted.
Being on call 24/7: People in especially difficult caregiving situations, such as with a loved one who has dementia or Alzheimer’s disease, for example, are more likely to have health problems and experience depression than caregivers of people with other conditions that don’t require constant care, according to the U.S. Department of Health & Human Services’ Office on Women’s Health.
Lack of experience: Many family caregivers have been suddenly thrust into the role of caring for a loved one. If this is true for you, you may feel like you have no control and that you don’t have the skills to be providing care, says Dr. Ercoli.
Are You on the Brink of Family Caregiver Burnout? Here’s How to Recognize the Signs
Because family caregiver burnout can happen before you know it, you need to pay attention to the warning signs. You might initially feel slightly more tired and irritable, or you could experience waves of emotion like frustration, anger, or helplessness, says Dr. Ercoli. Either way, it can quickly progress.
8 Common Symptoms of Family Caregiver Burnout
- Physical and mental exhaustion that starts out as fatigue, then progresses to feeling extremely drained and depleted, like it’s taking all your energy just to get out of bed, says Dr. Gholizadeh.
- Sleep problems—either insomnia or sleeping too much—unrelated to getting up to take care of your loved one.
- Feeling overwhelmed and always worried about your caretaking situation.
- Negative emotions, like anger, depression, or feelings of alienation. “You may find that you’re short-tempered or that you’ve lost empathy and feel very detached toward the person you’re caring for,” says Dr. Gholizadeh. Feeling a lack of control—that your life is no longer your own and it’s all about the care recipient—may lead to anger and/or resentment, adds Dr. Ercoli. You may also feel hopeless, like no matter what you do to take care of your loved one, it simply doesn’t matter. [RELATED: Ask the Expert: How to Cope with Anger as a Family Caregiver]
- Appetite changes, like overeating or undereating, due to depression and stress.
- Deteriorating physical health, including headaches or backaches. You might also notice you’re getting sick more often with colds and the flu.
- Using alcohol or medications like sleeping pills or anti-anxiety medications frequently to help you cope.
- Social withdrawal from friends or activities that you once enjoyed.
Take This Family Caregiver Burnout Quiz
Wondering if you’re experiencing caregiver burnout? The Health in Aging Foundation offers a free online self-assessment questionnaire for family caregivers. Take it online as an interactive tool with the option to print out your results or download in a paper format.
8 Ways to Prevent Family Caregiver Burnout
It’s never too early—or too late—to address family caregiver burnout. Even if you’ve already started to experience it, there are things you can do to recharge your batteries—plus there are plenty of resources and tools available to assist you. Don’t be ashamed if you’re feeling burnt out. “The emotional and physical demands of caregiving can be overwhelming for even the most resilient person,” says Dr. Ercoli. Here’s how to keep caregiver burnout at bay:
1. Accept help. Sometimes it can seem that accepting help from others is a sign of weakness, says Dr. Gholizadeh. It’s not. “People often want to help you, but they aren’t sure what to offer,” she explains. Jot down a list of things you need assistance with. Then, the next time someone asks what they can do, suggest a task from the list. For instance, you could have them run errands, cook a meal, or stop by for an hour or two to watch your loved one so you can have some time to yourself.
2. Arrange for respite care. Many family caregivers feel guilty when leaving their loved one in someone else’s care. But taking a break is one of the best things you can do both for yourself and for the care recipient, says Dr. Ercoli. Three main options for respite care include:
- In-home respite: This is when a professional caregiver from a home care provider, like TheKey, comes to your loved one’s house to provide companionship and help with daily chores and tasks. Medicaid and long-term care insurance may cover some or all of the costs. [RELATED: How to Use Long-Term Care Insurance to Pay for Home Care]
- Adult day care programs: These are places where your loved one can participate in structured programs and group activities while socializing with others.
- Short-term stays in nursing homes: Some memory care facilities and nursing homes will accept people for short stays while their caregiver takes a much-needed vacation or even a few days for themselves.
3. Find a support group. Family caregivers often feel isolated, and caregiver support groups can help you feel less alone. They also show you that you’re not the only one who feels the way you do, says Dr. Ercoli. “You may think you’re the only caregiver who’s angry and also ashamed for feeling that way, but you’re not,” she says. “It’s helpful to know other people feel the same and that they understand.” Dr. Ercoli recommends joining a support group specific to your loved one’s disease, such as an Alzheimer’s support group. You can find local or online groups through national organizations like the Alzheimer’s Association, the American Stroke Association, and the Caregiver Action Network.
4. Seek out other caregiving resources. The Eldercare Locator, a service of the federal government’s Administration on Aging, can help you find caregiving services in your area. You can also contact your local Area Agency on Aging (AAA), a nonprofit agency designated by your state to address the needs of elders. They can help you find services like meal delivery; home healthcare; non-medical home care, such as light housekeeping; ways to adapt your home to make it more accessible, like installing ramps; legal and financial assistance counseling; and respite care.
5. Maintain close relationships. Social support is important when you’re in a challenging situation like caregiving, says Dr. Ercoli. Research suggests that connecting with friends and relatives may benefit caregivers’ psychological well-being and lessen the caregiving burden. Make sure you set aside time each week, or every day if possible, to connect with those closest to you, even if it’s just by exchanging a quick text or phone call.
6. Prioritize your own physical health. You won’t be able to care for your loved one if you’re sick, Dr. Ercoli says. Make sure you’re up to date on all your vaccinations and screenings, and that any underlying chronic health conditions you may have, such as diabetes or high blood pressure, are under control. Also, tell your primary care physician that you are a caregiver. They may have some suggestions or strategies to help you cope.
7. Practice self-compassion. It’s important to offer the same level of kindness and care to yourself that you give to your loved one. “You need to have self-compassion to recharge and maintain the emotional energy to be a caretaker,” says Dr. Gholizadeh. “If you constantly criticize yourself, it will make you feel more stressed and depressed, and accelerate caregiver burnout.” To combat this, Dr. Gholizadeh suggests creating a ritual to do just before you start your caregiving duties and when you finish or have downtime. “It can be as simple as doing some deep-breathing exercises. The ritual acts as a signal to relax, be present, and enjoy the time you have.”
8. Consider taking a leave of absence. More than half of employed caregivers work full time. If you feel you need a break to devote yourself full time to caregiving and you work for a public agency, including local, state, and federal employers, or for a private company that has 50 or more employees, you may be able to take up to 12 weeks of unpaid leave a year through the federal Family and Medical Leave Act. However, you need to have worked a certain number of hours to be eligible. Talk to your human resources office to learn what options are available to you. Some states also allow family caregivers to be paid if the care recipient is eligible for or receiving Medicaid or benefits through the U.S. Department of Veteran Affairs. You can contact your local Area Agency on Aging for more guidance.
Finally, remember, you’re not in this alone. While caring for a loved one can be incredibly stressful, it can also be rewarding to help and support a person you love dearly. But you need support as well, no matter what, says Dr. Ercoli. That’s why you owe it to yourself, and your loved one, to take advantage of all the resources that are out there.
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