Caring for the Caregiver: A Guide to Getting the Rest You Need to Take Care of the Ones You Love
Understand the common signs of burnout and learn realistic ways to prioritize your sleep and wellbeing as a caregiver
Being a caregiver is a role many of us don’t plan to take on, but we don’t always get a warning when it comes to being there for those we love. Life happens, and we rise to the call, often at the expense of our own rest and wellbeing. With over 43.5 million people voluntarily caregiving, and that number rising due to COVID-19, it is important to start the conversation around “caring for the caregiver” because self-care is more than taking a relaxing bath or doing yoga ―its self-preservation.
We recognize that caregiving requires compassion and immense responsibility and understand that it can take a toll on your mental, physical and financial health, but, we are also here to take time for yourself because your health matters too. In this guide, we will provide realistic ways to prioritize rest and wellbeing and detect early signs of burnout.
The relationship between caregivers and sleep is not always a positive one, but there are ways you can improve your sleeping habits and keep your mental health in check as you go through life’s ups and downs. But first, let’s go over just how significant sleep problems are among caregivers.
The Prevalence of Sleep Disturbances Among Caregivers
According to a multilevel analysis published in the BMJ, caregivers who work in healthcare are 1.5 times more likely to experience sleep problems compared to the general population, and this statistic came out before COVID-19 exponentially increased their workload even more. Those who care for loved ones at home have an unusually high prevalence of sleep disturbances as well.
40 percent of caregivers to a family member with cancer reported sleep problems, and up to 70 percent of caregivers to a family member with dementia reported sleep disturbances.
Another meta-analysis found that those who care for people with dementia lost 2.42 to 3.5 hours of sleep each week due to difficulty falling asleep and maintaining sleep.
Contributing Factors to Sleep Disturbances
Sleep is essential to staying healthy and functioning in your duties as a caregiver. But it can be difficult to fall asleep and stay asleep during the night when your mind is racing and your to-do list is piling up. Whether it’s taking care of your loved one’s needs in the middle of the night, changing your routine to accommodate the needs of the person you are caring for or dealing with the emotional rollercoaster that can come with caring for a loved one who is ill, there is a slew of reasons why you may not be able to sleep when your head hits the pillow at night.
Whether it’s taking care of your loved one’s needs in the middle of the night, changing your routine to accommodate the needs of the person you are caring for or dealing with the emotional rollercoaster that can come with caring for a loved one who is ill, there is a slew of reasons why you may not be able to sleep when your head hits the pillow at night.
As a result of not sleeping well, you may wake up feeling unrested and feel fatigued later in the day, creating this cycle of sleeplessness that can really affect your overall mental and physical health. While this pattern can feel never-ending, there are active steps you can take to addressing the quality and quantity of sleep you are getting.
While the pattern of sleepless nights can feel never-ending, there are active steps you can take to addressing the quality and quantity of sleep you are getting. Here are a few tips to get you started. We understand that getting enough sleep can feel like an impossible task when you are constantly prioritizing the health and well-being of others and are not here to diminish the challenge or sugarcoat the obstacles that may get in the way of a good night’s rest. But, we do want to remind you that according to research many caregivers experience significantly better sleep quality after behavioral interventions like therapy and other components of self-care such as the ones listed below.
#1 Develop a regular night and morning routine
Both you and the person you are caring for can benefit from a regular night and morning routine. So how do you establish a routine when your days seem out of your control? First, plan your schedule. Set a regular time for waking in the morning and write down chores that need to be done, such as helping your loved one wash and get dressed, and preparing meals for the day. Next, you will want to establish a nighttime routine focused on helping your loved one wind down. Finally, since life and caregiving can both be widely unpredictable be sure to allow enough flexibility in your schedule for when issues arise that derail your plans.
#2 Take control of your sleep environment
Unless you must sleep in the same room as your loved one, you should sleep in a separate room. Make that space your sanctuary that is both comfortable and conducive to sleep. It should be cool, dark, and relatively quiet, as well as free from anxiety-provoking stimuli. Your bedding should be comfortable and breathable and your mattress cushioning and supportive. If you need to keep an ear out for your loved one consider using a monitor.
#3 Get out of bed
From time to time, you may have difficulty falling asleep or wake during the night unable to fall back to sleep. When this happens, get up. That’s right, experts say that staying in bed when you cannot sleep only reinforces sleeplessness, physiologically and psychologically. Try reading, listening to music, or meditating until you feel sleepy again. What you don’t want to do is scroll through your smartphone, flip open your laptop or watch TV. Electronic devices emit blue light which boosts alertness and can keep you awake rather than putting you to sleep.
#4 Keep a sleep journal
A sleep journal or diary is a place where you can record sleep and wake times as well as other information such as if or how often you woke up during the night and why, and how fatigued or refreshed you felt the next day. You can also record any unusual stressors or illness symptoms. Sleep journals kept over several weeks or months can help identify sleep disorders or other problems that may be addressed through medical or therapeutic intervention. Sleep journals are great options for you as well as for the person you are caring for.
Caregiver burnout is defined by the American Medical Association (AMA) as “a state of physical, emotional and/or mental exhaustion that can create negative and unconcerned caregiver attitudes.”
Caregiver burnout can occur when we as caregivers don’t get the help and support they need and instead become overwhelmed with the demands of the person we’re caring for. Caregivers may suffer from fatigue and experience feelings of hopelessness, that if left unaddressed can make caring for a loved one extremely difficult.
Burnout can also lead to increased use of alcohol or stimulants as a way to ease anxiety, depression, and exhaustion which can adversely impact immunity and put caregivers at risk for illness and other health problems and, unfortunately, many caregivers are either unaware they are burned out or unwilling to ask for help.
According to the AMA, nearly 25 percent of caregivers who provide more than 40 hours of care per week report that their health has deteriorated as a result of their caregiving. More than half said their health has declined to the point that it has affected their ability to care for their loved ones. For all of these reasons, it is important to stop and access signs of burnout.
Causes of Caregiver Burnout
- Adjusting to a new role. When someone is suddenly thrust into the role of caregiver, it can be difficult for them to separate their role as a caregiver from their role as a parent, spouse, child, or friend.
- Unrealistic expectations. Many caregivers expect they will have a positive effect on the health and happiness of the person they’re caring for. But this is not always the case, especially when the person being cared for has a terminal or progressive disease, like Alzheimer’s.
- Demanding too much of yourself. Some caregivers place unrealistic demands on themselves, thinking they must provide all the care for their loved one rather than seeking the help and support of others.
- Uncertainty. COVID-19 challenges have made an already trying job more difficult with added safety measures to prevent the spread of the virus. The uncertainty surrounding COVID-19 can heighten anxiety and worry while social isolation can leave caregivers feeling alone.
When caregivers are asked why they don’t take more time for themselves, the question is often dismissed as many people who are in this role don’t feel like they have the time or feel guilty taking the time to take care of themselves. But caring for yourself first is the biggest act of self-preservation you can do. You owe it to the person you are caring for as well as the others in your life to prioritize your rest and wellbeing. By doing so, you can be more present and more emotionally and physically available to those who need you.
- #1 Get up and move: It may seem impossible to break away and go for a walk. But, doing so works wonders on the body and mind. Walking just 20 minutes five days a week improves cardiovascular health, fights weight problems, and boosts your immunity. It also relieves stress so you can be more relaxed in your caregiving role. Try starting with light walking for short distances and gradually increase minutes and/or the number of days each week. If your loved one is mobile—either on foot or in a wheelchair—bring them along for a change of scenery.
- #2 Be mindful of what you eat: When you’re under stress, it’s easy to skip meals, binge eat or grab fast food when time permits. However, with a little advance planning, you can stock up healthier alternatives, like fruits and vegetables (whether they’re fresh or frozen), whole grains, and lean proteins. The payoff is more energy, improved mood, and better health to fight off illnesses.
- #3 Carve out time for yourself: One of the most important things you can do is to take some “me” time. Schedule 20 minutes daily or an hour once a week. Spend the time doing something that brings you peace and happiness. It doesn’t have to be big, maybe just a meal from your favorite restaurant or taking a walk with a friend.
- #4 Check-in on yourself like you would with the people you are caring for: As a caregiver, you probably spend much of your time checking in on those in your care to ensure their needs are tended to. You have needs, too. Try checking in on your thoughts and headspace throughout the day and taking note of how you feel.
- #5 Consider talking to someone: Reaching out to other caregivers who are dealing with similar struggles can be validating and healing. If you are dealing with depression or the added stress of caring for your loved one becomes overwhelming, consider speaking with a mental health professional or joining a support group. Sometimes all it takes is a reminder that you are not alone.
Doctors, nurses, nursing home staff, daycare workers—essential workers who are heroically putting themselves at risk to care for others during this global pandemic—are just as prone to caregiver burnout as those who voluntarily care for loved ones. A Mental Health America (MHA) study surveyed more than 1,000 healthcare workers on the frontlines during COVID-19 about their emotional health. Researchers found that 93 percent said they felt the burden of extra stress, 86 percent said they were anxious, 77 percent reported feeling more frustration, 76 percent said they were exhausted and burned out, and 75 percent reported feeling overwhelmed.
70 percent of healthcare workers said that since the pandemic, they were experiencing more trouble with sleep.– Mental Health America (MHA) study
In fact, according to another study involving healthcare workers during COVID-19, 90 percent of healthcare workers were getting less than the recommended eight hours of sleep each night, and a third admitted to getting just four hours or less. That lack of sleep is also taking a toll on work performance. One in three healthcare workers said they felt they’ve been making more mistakes at work.
Different people benefit from different coping skills. For example, meditation may be helpful to one person, but for another, it may be too difficult to quiet the mind and relax. “Find the coping strategies that work best for you and use them when you’re feeling stressed,” says Natalie Nageeb, PsyD, a psychologist in the Cancer Center at Children’s Hospital of Philadelphia.
“Patience and self-compassion is key,” she says. “As [caregivers] seek support and explore self-care strategies that provide the best fit for them, attending to what coping skills have helped during challenging situations in the past can be a familiar starting point.”
–Natalie Nageeb, PsyD, a psychologist in the Cancer Center at Children’s Hospital of Philadelphia.
There are plenty of resources that provide support for caregivers. Here’s just a few:
- Caregivers by MedlinePlus, an Informational site for caregivers provided by the National Library of Medicine at the National Institutes of Health (NIH). Features include research and journal articles.
- Medicare.gov, a blog that provides resources, stories, and newsletters about taking care of someone with Medicare.
- Caregiving, a site that breaks down long-term care, advanced care planning, long-distance caregiving and Alzheimer’s care, through the NIH’s National Institutes on Aging.
- Alzheimers.gov, the government’s information resource for people taking care of those with Alzheimer’s disease and related dementias.
- Eldercare Locator, a public service connecting caregivers to services for older adults and their families from the Administration on Aging.
- Family Caregiving, an online resource through the AARP (American Association of Retired Persons) that provides information on blogs, webinars and online communities.
- Caregiver Action Network, a resource that offers practical lists for caregiving such as patient file checklists, doctors’ office checklists, medication checklists, information on how to find support groups, and independent living assessments.
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- The Complicated Relationship Between Caregiving and Sleep
- Addressing Your Sleep As a Caregiver
- Am I at Risk for Caregiver Burnout?
- How to Prioritize Your Wellbeing as a Caregiver
- Caring in the Time of COVID-19
- Insight From the Experts
- Additional Resources for Caregivers