Caregiving for those who are elderly or living with disabilities comes with both rewards and challenges, as any caregiver will tell you. It can be greatly satisfying to bring comfort and support to those in need, whether you are caring for a family member or are a professional caregiver.
But the challenges are many, too. Those who are called to the task of caregiving often face sleep deprivation, financial losses, burnout, and more — especially those roughly 43.5 million caregivers who are unpaid and may be living in the same home as the person for whom they are caring.
The coronavirus pandemic has amplified many of these challenges, but even as it wanes, caregivers are still struggling to manage their own health and well-being along with that of their patients. It’s no exaggeration to say that even in a pandemic-free world, challenges will persist.
If you are a caregiver and the weight of your responsibilities lies heavily on your shoulders, you should know that you’re not alone. According to a 2021 study, 20% to 40% of all caregivers experience depression, and half say it’s moderately to very difficult to balance work and caregiving. Caregiving can be hard — there’s no way around it. But there are tactics you can use to maintain your resilience and continue to maintain a busy schedule from a place of strength.
What Is Compassion Fatigue?
According to the American Institute of Stress, compassion fatigue is “the emotional residue or strain of exposure to working with those suffering from the consequences of traumatic events.” Those “traumatic events” can include serious illness or injury.
Compassion fatigue happens when a person has spent significant time in a caregiving environment with people or animals that are in pain or suffering, whether it is physical or mental. As human beings, we cannot shut ourselves off completely from what we are experiencing, and gradually, the stress of being involved in heart-wrenching situations takes a toll on the caregiver.
So, to give you an example, let’s take a Generation X woman with two young children, a full-time job, and a father who’s in the late stages of Alzheimer’s, who lives with her. She will be tired, as you can imagine, from trying to balance work and home life. On top of that, her dad’s needs take an increasing amount of time each week. Plus, she understands that he’s never going to get better, which makes her sad. She is a prime candidate for compassion fatigue brought on by the mental stress of watching her father decline combined with the physical exhaustion of her daily life.
What are the impacts of compassion fatigue? Here are a few:
- Schedule overload, resulting in a lack of time to care properly for the patient.
- Caregiver mental and/or physical stress, resulting in a lowered level of health for the caregiver themselves.
- Financial hardship resulting from loss of job due to caregiving (which leads to additional stress, setting up a dangerous cycle).
- Neglecting self-care, which can both exacerbate compassion fatigue, and be the cause of it.
- Relationship challenges: for example, if someone is spending significant time caring for a parent, their partner may start to feel neglected, leading to tension in the home.
As we mentioned before, the pandemic has heightened the difficulties for caregivers who may be skirting close to compassion fatigue. In some cases, COVID-19 created new, sometimes reluctant caregivers.
“With the isolation taking place within long-term care facilities due to COVID prevention, many family members felt they had to choose to bring their loved one home,” says Jennifer Kimball, a professional caregiver and guide at getsetup.io, an online educational community for older adults. “Once home, they were at a loss for direction because this was not a part of their plan for the future.”
Kimball believes the pandemic will have long-lasting consequences for caregiving. “I believe a lot of the lasting impact from COVID will have to do with a lack of trained professionals to care for our seniors,” she says. “There is already a shortage of nurses, and I am directly seeing the results of this situation worsening since the pandemic.”
For all the stresses that professional caregivers are under, it may be a little bit worse for volunteer caregivers who are taking care of a parent or other beloved family member. Love is a powerful motivator, but it may lead caregivers to avoid taking time for themselves, and they may feel a higher level of guilt in terms of the quality of care they provide.
Sleep Disorders That Impact Caregivers
One common impact of caregiving is the prevalence of sleep disorders. These may take a variety of forms, including the following.
Insomnia is characterized by persistent difficulty in falling asleep, as well as low-quality sleep and disrupted sleep. It can be chronic with caregivers.
Excessive sleepiness or fatigue
This is another common problem with caregivers. Fatigue or excessive sleepiness may be related to the nature of multiple responsibilities that all take significant time, from a professional life to family commitments to care for someone in need.
Shift work disorder
This affects people who work at uncommon hours and causes caregivers to have significant issues with falling and staying asleep.
Parasomnia includes sleepwalking, night terrors, and more, that result in disrupted or poor-quality sleep.
Most common, perhaps, is sleep deprivation, which is not a specific disorder but is caused by other factors in a caregiver’s life. Constant worry, for example, may lead to sleep deprivation. So may the experience of holding down a job while caregiving and raising children, leading to an inability to relax at night and let go of the mental to-do list that is swirling in your head.
You may also experience sleep deprivation if your patient lives with you and is unsettled during the night. If you need to get up frequently, say, to help an elderly parent to the bathroom, it will be difficult for you to get the deep REM sleep that you need.
If you are a caregiver and are nodding your head in recognition while reading about sleep disorders, you’re with the majority. It’s estimated that 76% of caregivers report poor sleep quality. The research indicates that sleep disturbance in caregivers was closely linked to depression, fatigue, and anxiety — all signs of burnout.
How to Avoid Burnout
So how does a caregiver avoid compassion fatigue, or burnout? Proactively addressing feelings of burnout when you first experience them can help you stay strong and give you the lift you need to tackle your daily responsibilities. Here are a few considerations that may help.
Plan and keep a sleep schedule
If you are able to, go to bed and wake up at the same time each day. We know that’s easier said than done, especially when you are faced with a patient who has demands on your day — and night. If that’s the case, plan a time during the day when you can get a short nap.
Another way to ensure you’re getting quality sleep is to consider your sleep setup.
Having the right mattress and bedding can help you turn your bed into a place where you can get away from all that you are involved in during the day.
Recognize your own needs
For many caregivers, it’s easy to allow their own needs to remain unmet while they provide a high level of care for their patient. But consider the rule on airplanes: you need to put on your own oxygen mask before helping another with theirs. Likewise, you need to maintain your own physical and mental health before you can help someone else.
Get help when you need it
Kimball says caregiving is not a one-person job. A supportive partner or spouse should be encouraged to chip in and help, as should children when they are old enough to understand. On a larger scale, look for local resources, such as your regional Council on Aging, to see if they offer support services or other assistance.
Cultivate your own life
It may seem crazy to add something to your already-full schedule, but there are dividends to having a hobby or something you enjoy doing. For Kimball, it was working in her yard and gardening. “I think if I didn’t take my time I might lose myself in that caregiver black hole that can pull you in and absorb 100% of you,” she says.
Include your patient in daily life
It can be good for both you and your patient to include them in the areas of your life that otherwise might not be available to them. For Jennifer Fink, who cared for her mother and created the Fading Memories podcast for Alzheimer’s caregivers, that meant having picnics in the yard and going to the park. “See if you can get your loved one to dance, be silly, play with the dog, kids — whatever it takes to get them in a joyful mood,” she says.
Ellen Pober Rittberg, author of “Why is Grandma Naked: Caring for Your Aging Parent,” says daily exercise should always be a part of your schedule — even if you do it while caring for your patient. “Get some exercise each day even if it means marching in place while you watch Wheel of Fortune with the person you’re caregiving,” she says.
Pay attention to warning signs
Be alerted to changes in yourself that might signify burnout. Are you feeling more irritable lately? Did you bark at your partner for something minor? Make note of changes in your own behavior, and when you see them, bite the bullet, find a substitute caregiver, and schedule a half day or more of vacation time.
Thoughts From Caregivers Around the U.S.
Millions of Americans are currently acting as caregivers, either professionally, as nurses, health aides, and more, or as unpaid (and often overworked) volunteers who are caring for family members who cannot live on their own, or who need assistance to do so. Although everyone’s experience is unique, many caregivers experience situations that will resonate with others in the same situation.
Carol B. Amos, for example, cared for her mother, who had dementia, and ended up writing H.O.P.E For the Alzheimer’s Journey: Help, Organization, Preparation, and Education for the Road Ahead. She was bolstered by the support of her two brothers as well as her church family. Carving out time to play tennis also provided hope and encouragement. “Taking a half-day of vacation, talking with a close friend, or just taking an extra 10 minutes to drive the scenic route home helped to relieve my caregiver stress,” she says.
Jackie Benardout cares for a 95-year-old aunt and runs a caregiving/mobility blog that helps others in the same situation. “The most important advice to caregivers who may be suffering from burnout is to make time for yourself,” he says. “Getting a good night’s rest is particularly important. Make sure you have a comfortable mattress that supports and relaxes your body.”
Ruth Ford has struggled with caregiving stress and how to manage it as she cares for her husband, who has Parkinson’s disease. In this short video, she talks about what has been hardest for her and how she copes.
Resources for Coping and Staying Resilient
We can’t say this enough: You are not alone. If you are a caregiver, you should know that there are multiple resources out there that can help you stay healthy, give you information, and let you talk to other caregivers.
Eldercare Locator – A public service of the U.S. Administration on Aging that connects you to local services in your area for older adults and their families. Phone: 1-800-677-1116
Family Caregiver Alliance – Works to improve the quality of life for family caregivers. Information is available in multiple languages, including Spanish, Chinese, and more. Phone: 1-800-445-8106
Caregiver Action Network – Instructional blog, caregiving news, digital tools, and more, including peer support and resources. Phone: 202-454-3970
U.S. Food & Drug Administration: Caring for Others – This page links to articles on medicine, food preparation, health conditions, and caring for yourself, along with other resources. Phone: 1-888-463-6332
AARP Caregiver page – Caregiving Q&A, local caregiver resources, educational guides, legal matters, and more geared toward caring for the elderly.
National Institute of Aging – Caregiver page Health information, advance care planning, long-distance caregiving, and more.
Alzheimer’s Association Caregiver page – Information on caring compassionately for those experiencing Alzheimer’s Disease. Free educational programs and dementia care resources, support groups, and more. 24/7 helpline: 1-800-272-3900
National Cancer Institute – Caregiver page Information on caregiving for those with cancer.
U.S. National Library of Medicine– Caregiver information articles on the basics of caregiving, research on children, older adults, and patients, find-an-expert, and more.
Caregiving can be challenging — we can’t avoid that fact. But there are ways to make it easier, from simple things like buying a mattress that helps you sleep soundly at night to more complex tactics like building a strong support community.
Whether you are a professional caregiver or one of the many individuals in this country who are caring for a loved one, you already have superhero status. You may manage a job and a family, and you undoubtedly have a life that means you’re more than just a caregiver. Your days — and nights — are full, and you juggle many balls at the same time to keep your life in order.
By taking advantage of the support you need, you can find ways to negotiate the caregiving turf and provide the best possible care to another person while also nurturing your own soul and keeping yourself healthy, both physically and mentally. Doing so helps you navigate the inherent highs and lows of caregiving and lets you experience the rewards of making the life of another person better, fuller, and healthier.