Caregiving is one of the most selfless things someone can do — but it’s also one of the most emotionally taxing. Because, while altruistic, caregiving is hard and real work — both emotionally and physically — and it can, and often does, take its toll on the health of those who give care.
Out of the 43 million Americans that have provided unpaid care to a friend or family member in the past year, 40 to 70 percent experience symptoms of depression — a quarter to half of whom match criteria for ‘major depression.’ And this number is even higher for women, with 20 percent of women caregivers reporting symptoms of depression, while only 8 percent of non-caregiving peers reported the same.
“Caregivers experience higher levels of emotional stress than the general public,” as they tend to “put the care of their loved ones above their own which means putting their own self care on the back burner,” says Lakelyn Hogan, Gerontologist and Caregiver Advocate at Home Instead Senior Care. They are also “typically very busy and find it hard to take time to care for themselves,” adding that if and/or when they do find the time, it’s common to feel guilty for doing so, which perpetuates the cycle of neglecting self-care.
But of course, as Dr. Lindsey G. Robertson, a licensed clinical psychologist who researches women’s issues and family caregiving, points out, “our own needs do not stop when we become caregivers,” and avoiding them can actually hinder caregiving abilities. “If you ignore or neglect your own basic needs, your ability to function — from ability to stay alert and focused, to move comfortably, to regulate emotions, to reason clearly — will be increasingly impaired.”
Practicing self-care can feel impossible when you’re a caregiver however, as Ariel, who’s been her mother’s full-time caregiver for over 20 years, tells SheKnows. “My constant demeanor is on-the-lookout,” she says. “I live in a state of constant anxiety regarding [my mother], and am paralyzed at the possibility of anything happening to her. She’s all I have, truly. She’s it.”
So when it comes to self-care: “It feels like bailing glassfuls of water out of a sinking boat.”
Ariel’s feelings are common for people in a caregiving role. According to Robertson, caregivers tend to have high expectations for themselves and/or be in situations where others have unrealistically high expectations of them, which contributes to their already-existing stress — and hesitance to pause and do something for themselves. “As a caregiver, you are in service-oriented helping work where emotional and mental demand are particularly intense [and[ the stakes are personal and grave, [like] the life and health of someone you care about or your relationship with that person. Your work performance can easily get confused with your identity and character.”
Not only can that performance also be misunderstood internally, but from outsiders, too, resulting in harsh and unfair judgment. “I wish people understood how utterly wrung out I am and have been for a very long time,” Ariel adds. “I am constantly exhausted and filled with anxiety trying to corral a person that is not myself. I work a 24/7 job and people assume I don’t even work and I’m just living off of my mother. It’s frustrating.”
Others who have a better idea of Ariel’s situation — from friends to nurses to social workers to police officers — have suggested she simply leave her mom and live on her own if it’s so taxing, but that’s not an option for her. “This is not just a job that I show up to and clock out of — it’s my day in day out life. There is no separation. It is up to me and me alone to get this woman to the finish line, for her sake and for mine.”
Clearly, being a caregiver is difficult enough as is — but now that there’s a global pandemic, caregivers’ stress levels are escalating beyond belief.
Fear, Anxiety & Guilt: Caregiving in a Pandemic
Scott, who cares for their non-verbal son with autism, initially struggled with potential changes the pandemic would bring — as well as managing their guilt. “When I realized the stay at home order was happening my first thought was, ‘I only do one full month a year where I work 16 hour days, day after day after day. July is that month. Now I’m going to have this month after month after month,’” they say. “I feel guilty I’m not doing everything I’m instructed to do. I still feel guilty.”
And of course, they’re concerned, too: “People [are] refusing to wear masks and spreading misinformation about how they make you sicker. It scares me. It scares me because they think their opinion is more important than empirical data over decades showing how masks work. I’m terrified that this disease would kill me, my kids or my wife.”
Similarly, Annabella, who helps care for and lives with her mother, is experiencing immense unease and pressure atop an “already already anxious and stressful year.” “I’m very concerned that cities are opening up prematurely,” she says. “And since I have to be incredibly careful about where I go and who I see outside of the home for the sake of my mother’s health, I’m especially angry and frustrated at the selfishness of my neighbors who don’t wear masks, crowding bars and restaurants. They are putting not only themselves at risk, but countless others.” This, of course, includes her high-risk mother.
“My life is already so consumed by caring for another individual — now [during the pandemic]? I feel like I’m being waterboarded and can’t come up for air. There is no respite, no relief. I have debilitating panic attacks. I am on the verge of crying at any given time,” Ariel admits. “The dull hum of fear related to my mother’s health has become a constant, droning siren in my ear during the pandemic.”
According to Hogan, these caregivers are far from alone: COVID-19 has been especially challenging for caregivers. “Many caregivers rely on supportive services such as Meals on Wheels programs or respite services to take a break from their caregiving role. Those services may have been interrupted or eliminated due to the pandemic, which added additional stress and strain as they are now having to support their loved one even more, or aren’t getting a much-needed break from their caregiving role.”
Additionally, many caregivers are part of the “sandwich generation, sandwiched between caring for their own children and aging parents and/or loved ones. “Schools were closed leaving caregivers with the added stress of homeschooling their children,” while “many employees transitioned to working from home due to the pandemic which is another added stressor.” And to add fuel to the fire, social isolation has only made things worse: “Before the pandemic, caregivers often felt isolated,” Hogan says. “Social distancing has increased feelings of isolation for them and the individual they are caring for.”
In short: For caregivers, this pandemic is a recipe for emotional disaster.
“The first few weeks were almost unbearable — having to get groceries was like taking a physical beating,” Ariel says. “I was certain that I had been exposed and now was just waiting for symptoms to set in, in turn infecting her and losing her due to her preexisting conditions…That led me spiraling into imaginings of what would become of me without her.”
How Can We Help the Helpers?
So how can we, as friends and loved ones of caregivers, help support caregivers during this time? And more importantly, how can caregivers take care of themselves — amid all the chaos and uncertainty of this pandemic, when they already bear such an unfair burden of responsibilities?
“For caregivers, the key is often to come to terms with the fact that our human limits mean that part of caring for others is caring for ourselves,” Robertson explains. “Attending to our own needs and wants is part of wellness, and a caregiver’s personal wellness is not an optional task but a necessary and strategic one…attending to your own needs is not selfish or frivolous, but necessary to your ability to continue to care for others.” She compares it to the airplane safety instructions: ‘You must secure your own oxygen mask before helping others.’
As we’ve seen however, for caregivers, this is much easier said than done. But Robertson has a technique that just might help: Retraining yourself to know when and how to refuel.
“Relearn how to listen to your body cues so you can relearn what you need, want, and find life-giving,” she suggests. “Start small and start with the body: when your body tells you it’s antsy and it needs to move, stand up, or sit down; when you need to bathroom, when you are thirsty, when you are hungry or when you are full; when you are sad and need comfort; when you need to sleep.”
“Work on paying attention to moments when interest or desire or delight cross your radar. Listen to those moments when your heart is drawn to something good,” she adds. “Maybe it’s in moments when you are letting yourself be honest about something, or take a mental break and retreat, or spending extra time in the shower and doing your morning routine, or connecting with certain friends. Follow those impulses if you can. Work to recognize patterns about what activities drain your energy, and what activities fire you up.”
Once you’ve re-established your needs, Robertson says to “practice self-compassion and embrace the process.” This includes setting boundaries, which may take a caregiver out of their comfort zone — but can ultimately help them: Normalize cancelling plans, taking breaks, saying no, and relying more on other people, tools, and health care providers for support.
It’s also essential to name the work that you do. “Some statistics say that up to a third of US Americans are informal caregivers, but because the role is informal, many caregivers don’t self-identify or recognize that this term applies to them,” Robertson explains. “Recognize that caregiving work is work — hard work. Work that involves lots of complex efforts, not just the obvious physical actions you can quantify on a task list.”
Some categories of caregiving work that tends to go unnoticed are emotional labor, mental labor, self-regulating and self-care. Each of these requires a substantial amount of energy, and therefore, breaks and rest as well.
“If we aren’t recognizing it, we can name it and factor it in to our self-understanding and wellness needs.”
Another technique Robertson recommends is taking ‘mini-vacations.’ “The idea of a “mini-vacation” is that it helps create more space for yourself and your needs even in intense, negative, and high pressure situations,” she explains. To successfully mini-vacation, one would intentionally stop actively managing their life for a brief span of time — maybe five minutes, maybe three hours. “During this time, you retreat from obligations and managing tasks and allow yourself to be present in the moment, spontaneously reacting to yourself in that moment, or allowing yourself to be cared for and ‘off duty.’” Some examples of mini-vacations include reading something light and easy, sitting alone outdoors and/or turning off your phone to give yourself time to properly disconnect.
Not too much, though, because another useful tool is remaining connected to close friends and/or supporters. “Create a group text thread, email thread, or online group page. Communicate with them how you are doing, keep them in the loop. Just the act of talking about the challenges you are facing with people who care can make a huge difference,” Robertson says. “Even when there is nothing practical they can do or change.” Sometimes just being heard and validated is enough.
Lastly, Robertson suggests taking time to make a list of specific tasks you might need help or want from others, like sitting on the phone with insurance to figure out a coverage question, laughing and being distracted, a buddy to go on walks with, or enough break time to take a nap.
“Get creative and ask for help wherever you can,” she adds.
And, as allies, remember it’s our duty to step up and assist our caregiving friends when they’re in need — and really listen to what they’re asking for.
“Don’t offer us sympathy, offer to be a substitute caregiver,” Scott says. “I need some time off here and there.”
“As a caregiver, excess money is basically non-existent, and the food factor can be/has been an extreme stressor,” Ariel adds. “[Friends could support me by] dropping off home cooked meals or ordering takeout.”
And, of course — please take the pandemic seriously.
“I am very fortunate that I am able to afford delivery groceries. For those of us who have these advantages, it is our duty to lower the risk of infecting others,” Annabella reminds us. “Read, stay informed, check in on loved ones and WEAR MASKS.”
Because you don’t know who the person in line behind you might be taking care of.
If you are a caregiver in need of support, visit caregiveraction.org and/or call Caregiver Help Desk at 855-227-3640.