Emma Heming Willis, the wife of actor Bruce Willis, shared a raw and vulnerable post on Instagram earlier this week about the reality of being a caregiver and all the challenges that can come with it.
Among the different ways society may overlook the various caregiving experiences, there’s one aspect of it that isn’t often talked about: Many times it’s an “invisible” job.
In the Instagram video posted on Monday, Heming Willis had addressed the recent deaths of actor Gene Hackman and his wife, Betsy Arakawa, who died a week apart from different diseases in their home in Santa Fe, New Mexico, last month. According to a medical examiner, Arakawa, 65, died from pulmonary syndrome caused by hantavirus — a disease typically spread by rodents. Hackman, 95, died a week later of “hypertensive and atherosclerotic cardiovascular disease, with Alzheimer’s disease as a significant contributory factor,” Dr. Heather Jarrell, chief medical investigator said at a news conference last week.
“So this is not something I would normally comment on, but I do really believe that there is some learning in this story in regards to the tragic passing of Mr. and Mrs. Hackman,” Heming Willis said in the video. “It’s just made me think of this broader story, and that is that caregivers need care, too.”
After addressing Arakawa and Hackman’s deaths in the video, Heming Willis then talked more broadly about the role of caregivers, and some common misconceptions about it. She has previously opened up about her own experience caring for her husband, who has been diagnosed with frontotemporal dementia. She also has a book that aims to provide a support guide for caregivers that’s due out this year.
Hemings Willis’ post sparked conversations online about caregivers and the many struggles that come with it. And experts say perhaps one of the most isolating is the issue of “invisibility.”
Sophia Tsesmelis Piccolino, clinical assistant professor and director of the Zelda Foster Studies Program in Palliative and End-of-Life Care at the New York University Silver School of Social Work, explained to HuffPost that “caregiving is often viewed as a private, familial responsibility rather than a societal concern.”
She said that caregiving is often seen as a “family duty,” which prevents it from “being recognized as a broader issue requiring systemic attention.”
“This view is often compounded by gendered expectations, where women are traditionally expected to take on caregiving roles, leading to feelings of guilt and pressure when they seek assistance,” she said. “The lack of formal policies … only deepens the invisibility of this vital role, making it even harder for caregivers to balance their responsibilities with their own well-being.”
Jennifer L. Wolff, professor and director of the Roger C. Lipitz Center for Integrated Health Care at Johns Hopkins Bloomberg School of Public Health, told HuffPost that “caregiving is too often invisible” and often “just assumed.”
And the invisibility is caused in part by the fact that clinical care systems are commonly rooted in providing patients with autonomy, and therefore less support and resources are given to caregivers.
“The focus on clinical care and payment is driven by supporting individual patients, and most regulatory and payment systems are geared toward supporting autonomy and privacy — without recognizing that people with functional limitations often desire or require help of family caregivers and care partners,” Wolff said.
Tsesmelis Piccolino added that American society, like other Western societies, is “rooted in ideals of autonomy and individualism” and that it “often fails to acknowledge the needs of caregivers and the complex challenges they face, influenced by cultural, social and economic factors.”
Other Challenges Of Being A Caregiver We Need To Talk About More
Tsesmelis Piccolino said there also needs to be more societal and financial support for people in caregiving roles. This includes expanding access to options like paid family leave or respite care, which is a short-term service that gives primary caregivers a break from their caregiving duties, in which they can take the time to rest, travel or tackle other tasks they need. Most private insurance plans don’t cover respite care, according to the National Institutes of Health, and Medicare and Medicaid coverage for the service is limited.
Some caregivers may experience what’s called “caregiver burnout,” which is “a state of physical, emotional and mental exhaustion that can happen when you dedicate time and energy to manage the health and safety of someone else,” per the Cleveland Clinic.
Tsesmelis Piccolino later said that when “society acknowledges and supports caregivers, it not only improves their well-being but also strengthens the broader social community.”
“Adequate recognition and resources, such as respite care, financial resources, community support groups and meal assistance, can help reduce caregiver burnout, enhance the quality of care provided, and ensure that caregivers are not left isolated or overwhelmed,” she said.
Wolff emphasized that “caregiving is highly heterogeneous,” and it’s as “varied as families and the reasons that motivate the need for care.”
“Caregiving can lead to both positive effects such as competence, self-efficacy, rewards of personal gain — as well as negative impacts such as anxiety, depression, and stress in personal relationships,” she said.
She noted that there are a wide range of factors and circumstances that can affect one’s caregiving experience, from financial resources to the seriousness of the health issue.
Tsesmelis Piccolino pointed out that it can disrupt one’s social connections and their sense of identity. It may also increase the risk of isolation, as well as cause “complex and ambivalent emotions” such as guilt and shame.
“Feelings of guilt may arise for not doing enough for a loved one or taking time for oneself, believing they should always be available,” she said. “They may feel shame if they experience resentment or frustration, feeling like they’re not being good enough caregivers.”
But Tsesmelis Piccolino said it’s important to remember that the role can also have “profound rewards, such as deepening relationships, fostering personal growth, and providing a sense of purpose and meaning.”
How To Support A Caregiver In Your Life
Tsesmelis Piccolino pointed out that it may be difficult to determine the most effective way to assist a caregiver since everyone has unique needs. But directly asking a caregiver about their specific needs is a good approach.
Instead of saying, “Let me know how I can help” — which can “often feel vague and impersonal to a caregiver,” Tsesmelis Piccolino suggested that you offer thoughtful and practical ideas of ways to help, such as running errands, helping with household chores or providing emotional support.
“Providing clear, actionable assistance can make your help more useful and specifically suited to their needs, rather than adding to their mental load,” she said.
Wolff also recommended just asking someone how they’re doing. “I think a big issue is being open to listening and asking if/how help can be provided. There is no one-size-fits-all strategy.”
As for caregivers focusing on their own mental health and well-being, Wolff said it’s important that they recognize any struggles they may be feeling and ask for help from family, friends, a medical community, or seeking paid help if possible.
Tsesmelis Piccolino said that while the caregiving role can make it “feel nearly impossible to prioritize mental health,” a caregiver can try “small, manageable ways to reclaim some care over oneself.”
“This might include setting aside a few minutes each day for deep breathing exercises, taking short breaks throughout the day, or seeking support from a trusted friend,” she said.
Bottom line, it’s best to recognize the efforts of a caregiver so it isn’t invisible. Tsesmelis Piccolino said you should not assume that “caregiving is a voluntary choice.”
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“These misconceptions lead to caregiver burnout, isolation, and a lack of necessary support and resources,” she said. “My hope is that we cultivate a shared sense of responsibility for caregiving ― across all levels, from the smallest personal networks to the broader systems we interact with.”
“This shift involves changing the narrative from viewing caregiving as solely the caregiver’s burden to recognizing it as a collective responsibility that involves larger care systems,” she added.