How to Avoid Caregiver Burnout
What do a housekeeper, a chauffeur, a cook, and an accountant all have in common? If you are the primary caregiver for a loved one, then the answer is: they are all you.
Maybe you enthusiastically took on most of the caregiving after your mother’s stroke or your spouse’s accident, thinking it would mean quality time together as well as a better quality of care for them. But now, all you feel is fatigue, negativity, and even resentment. It’s normal to feel exhausted and overwhelmed sometimes, being needed in so many ways so much of the time. When the demands of your role as caregiver cause feelings of hopelessness and depression, leading to physical, psychological, and financial distress, you’re experiencing “caregiver burnout.”
Caregiver burnout occurs when you take on more than you can provide, stretching your energy, emotions, and resources to the breaking point. You might feel guilty for not being able to handle everything, or for craving time for yourself away from the needs of your loved one. You might feel hopeless or like you’re always coming up short—for your loved one and for yourself and others in your life.
Being a primary caregiver includes a spectrum of roles and responsibilities and is not limited to caregivers who live with those they care for. While around 40% of caregivers share a residence with those they care for, caregiving can be just as demanding when your loved one in a nursing or rehab facility. Certain caregiving demands, including keeping track of medical records and appointments, are challenging regardless of where they happen. Others are specific to the location, like time spent traveling and visiting your cared-for person in a facility, versus bathing, dressing, cooking for and feeding them at home.
According to a 2001 Pew Research Center survey, almost one-quarter of U.S. adults are responsible for the care of multiple persons in their household, attending to dependent adults and dependent or adult children at the same time. Caregivers in this situation are called the “sandwich generation” because they are in-between multiple generations who need their care.
Who is most likely to experience caregiver burnout?
Although family caregivers spend an average of 24 hours per week on caregiving activities, most would say it feels more like 24 hours per day because they’re also trying to balance caregiving with the rest of their responsibilities. Unsurprisingly, “sandwich generation” caregivers are at high risk for developing caregiver burnout. Pew reports that 54% of Americans in their 40s are raising a child younger than 18 and/or have helped a child 18+ financially, and also have at least one parent aged 65 or older. Demographically, this age group is most likely to develop caregiver burnout.
Caregiver burnout is also more likely to affect caregivers who are in particularly difficult care situations, such as caring for someone with Alzheimer’s or debilitating illness. In these situations, it can be especially stressful to reconcile their caregiver role with their prior relationship role. This “relational stress” often happens when becoming the caregiver for a parent or spouse.
It’s normal to expect that providing care to a loved one will improve their health and quality of life, but this may not be realistic for caregivers of people with a progressive or terminal condition. As the condition worsens, the caregiver may feel increasingly frustrated, sad, and overwhelmed…even more so if pain, discomfort, or dementia makes the recipient less cooperative and require even more care.
Lack of resources, whether time, money, or both, contributes to the stress and anxiety behind caregiver burnout, particularly for sandwich caregivers who are also trying to manage employment responsibilities at the same time. Almost two-thirds of caregivers are balancing working with caregiving; 61% of them report that the demands of caregiving have impacted their employment. When that impact means reduced employment hours and income, the resulting financial stress often causes caregiver burnout.
What are the signs of caregiver stress/burnout?
Caregiver burnout affects people physically and emotionally. It’s a condition marked by chronic stress, which can ultimately lead to chronic health conditions. Only about 40% of caregivers report that their health is “excellent” or “good,” which means that the rest – more than half of caregivers – are not in the best of health.
These physical and psychological signs can indicate that you are experiencing caregiver burnout:
- Denial about your loved one’s condition
- Anger toward the person you’re caring for, and/or feelings of wanting to harm yourself or them
- Depression, including feelings of helplessness or hopelessness
- Difficulty concentrating
- Heightened anxiety or irritability; feeling “on-edge” like you’re about to “lose it” physically or emotionally
- Increased physical and mental exhaustion and lack of energy
- New or increased difficulty falling or staying asleep
- Notable changes in weight and/or appetite
- Increased use of unhealthy coping behaviors, like smoking, drinking alcohol, or drug use
- Withdrawal from other loved ones, friends, and social or leisure activities that make you happy
If you’ve noticed any of these warning signs, there are ways you can improve your situation and take care of yourself so you can care for others.
What are some tips to prevent caregiver burnout?
Assess: Most caregivers don’t have limitless time, money, or other resources, so it’s important to assess the resources you do have and develop solutions to fill in for the rest. Know what you can and cannot do and keep track of the hours you spend taking care of others vs. taking care of yourself.
Ask for help: Think of specific things that would help you and the people in your life who’d be best for those tasks – then, request help. Making phone calls to doctors could be handled by an out-of-town sibling, and your teenager with the brand-new driver’s license would probably be happy to drive to the pharmacy and run other errands.
Accept: Many caregivers feel ambivalent about accepting offers of help because of their own expectations. In order to accept help and transition tasks smoothly, be sure to provide detailed information and instructions, and let go of perfectionism and control issues. You may feel like you’re the only person who knows dad’s medical history or can buy mom’s favorite grocery brands, and unless you share information and trust others to pitch in…you will be!
Connect: Feelings of isolation and loneliness are characteristic of caregiver burnout, but they don’t have to be. Keep in touch with friends, even if it’s just a quick call or text while the person you care for is napping. Connect with others who can relate to what you are going through. There are many live and virtual caregiver support groups, even those specific to certain conditions and relationships, such as parents or spouses with Alzheimer’s/dementia, or other conditions.
Forgive: Have compassion for yourself. It is normal to have thoughts like, “I am so angry that my husband’s stroke made the retirement we dreamed of impossible.” It’s also normal to feel guilt – for negative thoughts, wanting to spend time away from the person you care for, or for feeling like you’re not doing everything you could and should do for them. But this guilt contributes to the downward spiral of caregiver burnout, so try to give yourself grace and recognition for all you are doing.
Don’t forget yourself: Monitor your own physical and mental health by paying attention to your sleep, nutrition, and exercise. Keep in mind the analogy of an oxygen mask on an airplane: if you don’t put yours on first, you won’t be able to help anyone else. Find small ways to remind yourself of who you are and who you want to be beyond your role as caregiver. Without self-care your own internal resources wither, leaving you with nothing left to give.
What resources are available to help with caregiver burnout?
- As the “sandwich generation” continues to grow, with more people each year joining the ranks of family caregivers, awareness of caregiver burnout – and resources to help – have also increased. There’s a lot of assistance available in the form of groups, websites, and apps that can help ease some of the responsibilities of caregiving, including the following:
- Caregiving requires ongoing coordination of everything from meals to medications, but there are apps to help manage it all. Apps like CaringBridge and ianacare help caregivers share information and create caregiving schedules with other family members; apps like Medisafe help keep track of medical care and prescriptions. A more detailed list of caregiver apps is available here.
- The intense focus on caregiving frequently causes caregivers to feel isolated and alone. There are many groups and online communities that can help, from local, in-person groups to groups for specific medical conditions, such as Alzheimer’s and dementia, cancer, and neurological conditions like ALS. Links to a wide array of general and condition-specific groups are available at caregiver.org and aarp.orgWhenever possible, caregivers should try to enlist the help of others in their life to share day-to-day tasks like transportation and meal prep. Outside resources, such as meal delivery services, grocery apps, and cleaning services can also provide this kind of hands-on help. While they can be costly, many are also tax deductible, and many states have programs to reimburse family caregivers. Consult with a financial professional on how to claim caregiving expenses, and search government websites for caregiver reimbursement programs for your area.
- To help give yourself and the person you care for some much-needed time apart, inquire at your local library and senior center to see what recreational or other programs they offer.
How can a MedicAlert protection plan help me with my caregiving role?
Many caregivers rely on outside services to help them keep their loved ones healthy and safe. Medical ID and medical alert systems can be invaluable tools in a caregiver’s toolkit, adding an extra layer of care and security in case of emergencies.
A MedicAlert ID is recommended for the people you care for because it alerts emergency responders to their medical conditions, allowing them to give the most effective treatment. A MedicAlert ID paired with a Protection Plan enlarges the safety net that supports you in a medical emergency by allowing access to MedicAlert’s 24/7 emergency response service. Depending on the plan level, it will also give emergency responders your loved one’s full, updated medical and prescription history, wandering support services, and emergency contact information so you can be by their side. MedicAlert’s protection gives you peace of mind that your loved one will be in good hands when you can’t be with them all the time.
Click here for a full description of MedicAlert’s Protection Plans.
Being a caregiver is a difficult balancing act that caregiver burnout can derail. The most important thing to remember is that caregiving is all about maintaining dignity – yours and your loved one’s. As Rosalynne Carter said, “There are only four kinds of people in the world – those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers.”
Informational Resources: Caring For Yourself, Caring for Multiple People, Caregiver Burnout by Cleveland Clinic, Causes and Symptoms of Caregiver Burnout by Hopkins Medicine, How to Avoid Caregiver Burnout, What is Caregiver Burnout? Shifting Demographics and Pressure on Families, 10 Tips for Family Caregivers