When I became a caregiver for my late father, I felt alone. Alienated from most of my friends. My boyfriend dumped me. I became depressed. I cut myself. I felt that not a single person in the universe could understand what I was going through, because no one in my circle had been through it before. I was the first. I had no role model, no preparation, no training. After he died, I tried my best to attempt a return to “real life.” Before I realized that this goal was unattainable, mostly due to my unpacked trauma, it happened again—my mother got sick. She was diagnosed with a rare, life-threatening illness, and I moved home, again, to take care of a sick parent. Turns out lightning can strike twice.
Continuing down my second path as a caregiver, a repeat journey I had never intended to take, I used what I had learned from my previous experience to help cope. I sought professional help. I used social media. I began to connect with other young caregivers who “got me.” Realizing that I wasn’t alone in my struggle was one of the most important revelations I experienced. I wasn’t a freak. I wasn’t just “dealt a bad hand.” I was more normal than I had ever known. Just being able to vent with other caregivers has proved imperative to my mental health.
The Caregiving Reality in the United States
Recently my mom and I watched the movie “Sam & Kate,” and I got excited when I realized that both parent/child relationships are in a caregiver dyad. Sam, Bill’s son, lives with his father, drives him around, cooks for him, and helps manage his medical appointments. Kate, Tina’s daughter, doesn’t live with her mother, but drives her to church, helps with housework, and acknowledges, albeit silently, that her mother is a hoarder.
However, if you are neither a professional caregiver nor in gerontological research, you would never identify Sam and Kate as “caregivers.” Rather, they are doting sons and daughters, who are also at times portrayed as being parasitic or lazy. This contributes to the negative assumption that familism (the cultural value emphasizing warm, close, supportive family relationships and the prioritization of family over self) is inherent, and part of our growth. Moreover, it adds to the stigma that caregivers must be thankful and loving and must push aside any feelings of resentment.
‘The nature and role of caregiving has changed and will continue to change over the coming decades.’
Family caregivers provide most of the care for older people, or individuals with serious and chronic illness who are living in the community, but often they are not viewed as full members of the healthcare team. There is a deep belief in the familial obligation to care for older adults, perpetuated throughout society and media, which can cause caregivers to not seek public program support, because they believe they are ineligible or don’t deserve it.
But the nature and role of caregiving has changed and will continue to change over the coming decades. Increased longevity (and the associated increased years of living with chronic conditions), changes in family structure, geographic dispersions of families, delayed childbearing, climbing divorce rates and an increase of women in the labor force, among other factors, have caused the United States to reach a crisis in long-term care and brings about new social welfare needs. Not only have shifting demographics increased the demand for available caregivers, while social trends led to a reduction in the available family caregiver pool, but also the caregiving role has expanded in intensity and duration.
Caregivers act as nurses, performing complex medical duties, often without outside resources and support. They help with other activities of daily life that can be mentally and physically challenging. Outside of their role, they may be taking care of other family members while juggling a career. It is no surprise that caregivers are susceptible to psychological distress, social isolation, and financial hardship.
To meet the responsibilities required to be a caregiver, people in this role often make career and personal relationship sacrifices. Many caregivers experience burden, but due to their perceived duty, oblige without seeking respite. Caregivers who do seek help with daily responsibilities usually do so after reaching a rock-bottom point in their own mental or physical health.
The Movie Version of Caregiving
The word “caregiver” is never used in “Sam & Kate.” And researchers wonder why caregivers lack self-advocacy and self-identification. Both children in the film are—by definition—caregivers to their respective parents, helping with instrumental activities of daily living (IADLs) and activities of daily living (ADLs), but that’s never mentioned.
Hollywood could be a platform to support caregivers but, in this film at least, it’s enforcing the idea of invisible caregivers, who have no voice or need to seek support. This most definitely does not alleviate concerns about lack of self-identification and -advocacy. As Levitsky (2014) emphasizes in her book, “Caring for Our Own,” caregivers don’t self-identify as such, which is a problem because then they don’t acknowledge the help they’re providing, nor seek support systems. Levitsky also emphasizes the connection between familial obligation and not seeking public program support. This belief is slow to change, and combined with fast-moving social changes, leads to policy drift—a roadblock to defining the problem. “Sam & Kate” is an example of one such roadblock.
‘Self-advocacy for caregivers is ephemeral.’
It’s important to note that this lack of self-worth cannot be pinned only on those of the female gender (who are more likely to be caregivers), but rather on the obsolete ideology of family responsibility and our society and government’s failure to address the underlying issues that ultimately led to the crisis. Now Hollywood can be added to the blame list.
Self-advocacy for caregivers is ephemeral. After the care recipient passes, the caregiver’s duties are relieved, and the caregiver returns to their normal life, not necessarily advocating for the cause. And family caregiving advocacy organizations can be ineffective when it comes to politicizing. Most caregiver support groups support paid caregivers as opposed to informal, and the few that do oppose political agenda setting and avoid political participation. Caregiving-focused organizations often fail in outreach to the public, and remain blind to many caregivers who would benefit from their resources. Advocacy groups can be inept in their recruitment of political candidates that support long-term care, because “until it happens to them,” people don’t realize the problem we’re facing.
Policy, too, is slow to materialize. This could be due to a lack of public demand, and the fact that families have always taken care of their older relatives. But times have changed. Advocacy is needed to support these changes. Levitsky offers two solutions: “discursive integration,” in which familial beliefs are altered so that public support is more likely to be accepted, and raising political consciousness, made possible by creating a group identity sharing similar political will.
Hollywood has a reach that touches every home, regardless of the gender, ethnicity, sexuality, political affiliation, religion, of those living in it. Movies and television programs are well-suited to become a platform of discursive integration—they can show the public, many of whom are not caregivers but may become one someday, what the new normal really is. If a child taking care of their ill parent watches a new movie that represents caregiving through an honest lens, that person may realize that they, too, are a “caregiver,” and that caregiving is normal. They may start to identify as being part of a group and become more aware of—and open to—support for caregivers. This would then help raise political consciousness.
I strongly believe that if caregiving is normalized, fewer people will have to experience what I did. Hollywood should help prepare us for our future, not mask it in the guise of family tradition.
Susanna Mage is a doctoral candidate at the USC Leonard Davis School of Gerontology in Los Angeles.