Understanding Caregiver Burnout
Caregivers face emotional, mental and physical exhaustion. Offering them practical assistance can be of great help.
In November 2022, viewers of NBC's TODAY show were concerned when their weatherman of over a decade, Al Roker, 68, wasn't on their screens for several weeks. Fans soon learned that Roker was facing severe health issues and being treated for complications from a life-threatening blood clot.
In 2020, Roker had battled prostate cancer; in 2023, he underwent knee replacement surgery. Throughout his health struggles, Roker's wife of 27 years, Deborah Roberts, 61, has been his caregiver.
"Being a caregiver is really taxing, exhausting, frightening, all of those things and I never went through anything like this."
In an interview with Entertainment Weekly, Roberts said of her role in Roker's recovery, "I think a lot of people don't realize — and I never realized — that being a caregiver is really taxing, exhausting, frightening, all of those things and I never went through anything like this." Roberts described "caregiver burnout," a familiar feeling many people caring for an ill loved one experience.
In defining caregiver burnout, Lisa Winstel, Interim Chief Executive Officer of Caregiver Action Network, says, "Most people are thrust into the role of caregiver without much warning. At the moment, they become consumed by the patient and their issues — immediately doing Google searches on their loved one's diagnosis, treatment options and prognosis."
Defining Caregiver Burnout
They don't take the time to stop and think about themselves and how overwhelming, depleting and isolating being a caregiver can be. The Cleveland Clinic describes caregiver burnout as "a state of physical, emotional and mental exhaustion. It may be accompanied by a change in attitude from positive and caring to negative and unconcerned."
Burnout can occur when caregivers don't get the help they need or if they try to do more than they are able, physically or financially. "Clinical depression is higher for caregivers than the general public," says Winstel.
"To say it was a difficult time is an understatement."
Micole Cohen Richter, 48, of New Jersey, understands caregiver burnout all too well.
In 2021, Cohen Richter's husband, then 51, suffered a massive stroke. Richter says, "I still had three children living at home. Our twins were high school seniors. We had all these big life changes going on simultaneously. I never anticipated something like this happening to us, especially at our age. To say it was a difficult time is an understatement."
For Cohen Richter, her husband's illness meant taking care of him and putting her career on hold as she assumed sole responsibility for everything in the house, from the kids to maintenance to paying the bills. "It's been over a year, and I am still not in a normal routine," says Cohen Richter.
"Being sick isn't fun," says Winstel. "Sometimes loved ones aren't so loveable. Caregivers need help, and they need to take time for themselves. It's common for caregivers to feel isolated like no one understands what they are going through."
"Many people ask how we are doing, but then only really want to hear the good stuff and that things are better," explains Cohen Richter. "I can only really share the hard truths with my inner circle."
Caregivers need time away from their loved ones to maintain physical and emotional strength.
Burnout can occur when caregivers don't get the help they need or if they try to do more than they are able, physically or financially.
But, Winstel says, "taking time away can be extremely difficult, especially if the patient is resistant to other people caring for them."
She continues, "Caregivers pour everything into their patient. They may use all their days off to care for their loved one and put off their wellness like getting a mammogram or going to a yoga class."
How Can I Help?
Upon hearing that someone has taken ill, it's common for friends, family and neighbors to reach out to see how they can be supportive. Although well intended, this vague offer of assistance is only sometimes helpful. Cohen Richter says, "When people asked 'Is there anything I can do?,' my go-to answer was 'no' because I couldn't even think of what I needed."
A better approach is to offer concrete assistance. "What helped was people saying they would do things like call the school, take my boys to get tuxedos for prom, or [say] 'I am going to the market for myself, what can I pick up for you?'" she says.
Winstel suggests caregivers take a moment to list what they need. "It's hard to think at the moment with everything going on," says Winstel. "But if you keep a list by the phone, if someone calls and asks what they can do, you can immediately respond with 'pick up medications at the drug store' rather than letting the offer of help pass."
Other people can help by organizing group support systems like setting up a website (such as CaringBridge) to keep people up to date (rather than having to call), a GoFundMe page for unexpected expenses, and a Meal Train for dinners.
'Oxygen Mask on First' is Easier Said Than Done
Everyone has heard flight attendants say, "put on your oxygen mask first before helping others." But while this is valuable advice on an airplane, it may not be viable for a real-life caregiver. Cohen Richter recalls people telling her that she needed to eat in the early days of her husband's illness.
Sometimes loved ones aren't so loveable. Caregivers need help, and they need to take time for themselves.
"I couldn't eat," says Richter. "I physically could not, and it wasn't that I needed to be reminded; I just couldn't stomach anything."
"While it may come from a good place, telling a caregiver to 'stay strong' or to take care of themselves is insulting. Instead, tell them you recognize their strength and what a good job they are doing," explains Winstel.
She recalls her experience caring for her mother, who had late-stage cancer. "We were at the hospital, and she was being admitted for the last time," explains Winstel. "The nurse was examining my mom and checking for bedsores."
"The nurse turned to me and said, 'You have done a great job caring for her.' It was a busy night, and she told me I did a great job. It was so meaningful and supportive to me."
Another tip is that rather than saying 'you need to take care of yourself,' tell them how to do that. It can be anything from bringing over a cup of coffee and offering a safe space for them to vent or stay with the patient so the caregiver can go for a walk, go for a dental check or enjoy an evening out.
"We depend on old friends who know our history – the stroke has changed the trajectory of our life."
And while it is thoughtful to ask how a loved one is doing, be careful that it isn't perfunctory or in keeping with what the caregiver needs at that moment. Richter recalls going to dinner several months ago with a group of friends. She felt relaxed, engaging in meaningless chit-chat, when a woman across the table asked, "So, how is your husband doing?"
Cohen Richter says, "It wasn't the time. Not everyone at the table knew about my husband's issues. The exchange was awkward, and it wasn't in a place, physically or emotionally, where I wanted to get into it. I shouldn't have been put in that situation — I am allowed to enjoy some regular moments."
Realize It's a Rollercoaster
While things have improved for Cohen Richter, her husband's recovery is still ongoing. "My life has not gone back to what it was pre-stroke," says Richter. "I still haven't been able to return to work – I keep thinking I will, but then something else happens," Cohen Richter recalls that the support she received was terrific initially, but with time, it has dwindled.
"People get busy; they have their own lives and forget or don't realize what we are still going through," she says. "And because I am not in an acute situation anymore, I don't always feel comfortable asking for help even though I sometimes need it."
Even when a patient fully recovers, the caregiving experience can continue to impact. According to Wintsel, "It's common for caregivers to think 'What if something else happens?' They can't stop worrying. They also feel isolated having been removed from their daily lives for so long — it can be hard to return to feeling like their old selves."
Adds Cohen Richter, "Before the stroke, my husband and I had discussed relocating when our youngest child left for college. But I'm not sure that can happen now. We depend on old friends who know our history — the stroke has changed the trajectory of our life."