Unpaid Family Caregivers Have Had a Heckuva Year

Those of you in the Feminist Book Club community know me as the site’s resident sexpert. I typically write about sex positivity, reproductive health, and education. But I assure you, I contain multitudes. And one of those multitudes is, inexplicably, eldercare.

It may sound weird, but eldercare has been an interest of mine since childhood, when I watched my mother act as the primary caregiver to my grandfather. The burden she took on — her inclination to do it all herself — stuck with me. As I entered adulthood, I read as much as I could about compassion fatigue and burnout, particularly as they related to the caregiving professions. Eventually, eldercare became a side niche I covered as a journalist. But it wasn’t just work for me. As I dug into the research and as I interviewed experts, I felt I was preparing for something inevitable.

Now, I find myself in the “sandwich generation.” I’m 40, with a 6-year-old daughter, and my parents recently entered their 70s. Just the other month, my father was diagnosed with mild cognitive impairment, which can be a precursor to dementia.

Suddenly, despite all the “homework” I’ve done, I feel like I’m not ready for a damn thing.

The Burden of Unpaid Family Caregiving Falls Disproportionately on Women

According to a recent report from AARP, more than 1 in 5 Americans (21.3%) act as unpaid family caregivers to either an adult or a child with special needs. Sixty-one percent of those caregivers are women. This should come as no surprise to those who find similar gender disparities among parents. I’ve already written about how motherhood is seen as a default role for women. And this is tied to that. There is a deep-rooted cultural perception that women are natural nurturers. People expect them to take on those other caregiving roles.

And this is a problem. Because while caregiving can be fulfilling for many, giving them a sense of purpose and allowing them to use their care as an expression of their love, the role can still be hard on the caregiver. Twenty-three percent of unpaid family caregivers find it difficult to take care of their own health. In fact, 23% of caregivers in America report that caregiving has actually made their health worse.

There are a number of reasons for this. Caregivers tend to prioritize the needs of their care partner over their own needs. They find it difficult to ask for help, failing to build a support system around themselves. This added stress has an adverse impact on their physical health.

And then there is the financial impact.

According to a recent study, 33% of unpaid family caregivers across the globe spend, on average, 31+ hours a week on caregiving. Consider the fact that these caregiving hours are often in addition to parenting and/or work responsibilities.

Sixty-one percent of caregivers report that their caregiving role has for sure impacted their employment, with about half having to go in late, leave early, or take time off to provide care. Others report that they’ve been forced to cut back on their working hours or take a leave of absence. Some have even received warnings about their performance or attendance. Add this to the already-existing “motherhood penalty” (a financial penalty dealt out by those who assume that mothers will inevitably choose their child over their career) and this is just one more example of how women are consistently held back in the workplace.

The Pandemic Has Made Everything Worse

With the coronavirus having spread across the globe, laying low millions of people, many are becoming caregivers for the first time in their lives. In fact, 20% of unpaid family caregivers began identifying as such during the pandemic.

And this has been a revelation for them, especially as more care has, of necessity, moved into the home. Nursing homes are no longer the safe haven they used to be. Care partners have been forced to take on responsibilities for which they have no prior training or experience. Telehealth is not accessible to everyone. And even when patients are able to see their healthcare providers in person, their care partners are often not allowed to accompany them to appointments, leading to a breakdown in communication.

And then there is the financial impact. (Again.) We already know (from three paragraphs ago) that caregivers lose income because of their caregiving responsibilities. The pandemic has led to loss of income, too. meaning many are being hit in their wallets twice over.

The pandemic has served to highlight so many inequities in our society.

Caregiving is just one more area in which the lack of systemic support has become even more conspicuous.

And Then There’s This One Additional Wrinkle

We’ve been seeing a lot of stories in the media this past year about how domestic abuse survivors have been stuck in their homes with their abusers, leaving them open to higher rates of abuse. Happily, the Biden administration has begun distributing aid to support these survivors of domestic violence.

But not all domestic abuse occurs within the context of “romantic” relationships.

In the course of reporting on eldercare, I’ve heard stories from people who have become unpaid family caregivers not out of a sense of love, but of obligation. In fact, 53% of caregivers report feeling they had no choice in taking on this role. In some cases, they take on the care of aging and/or ailing family members despite still grappling with unresolved issues stemming from childhood abuse and/or neglect.

But with no one else stepping up, they don’t feel empowered to set boundaries on behalf of their own health and wellbeing.

Robin Tarter, an eldercare researcher, community health nurse, and critical gerontologist, once told me that caregivers often feel a sense of captivity or entrapment. As in the case of domestic abuse, these feelings have only been compounded by the pandemic. And according to a recent study from the CDC, there has been a sharp uptick this past year in caregivers with suicidal ideation.

What Can We Do?

There are a number of ways we can provide support to unpaid family caregivers. To avoid doubling the word count of this post, I’ll first point you to one of the studies mentioned above, where you can find a number of suggestions for people at all levels, from those involved in the federal government to those who are looking to make a difference in their local communities.

But beyond this, I suggest looking closer to home. Do you have a friend or family member managing the care of someone else? Listen to their stories without judging. Give them the gift of time. Offer to take certain tasks off their plate. Share resources you think could be helpful, so they don’t have to go looking for them on their own.

Give them the care they so often don’t give themselves. I promise you, they’ll appreciate it.

Steph Auteri

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Steph Auteri is a journalist who has written for the Atlantic, Pacific Standard, VICE, and elsewhere. Her more literary work has appeared in Poets & Writers, Creative Nonfiction, Southwest Review, and other publications. Her reported memoir, A DIRTY WORD, came out in 2018. She is the founder of GuerrillaSexEd.org. Favorite Genres: horror, comics, horror comics, and narrative journalism.