The Invisibility of a Family Caregiver

By Jean Accius

I am invisible, understand, simply because people refuse to see me. Like the bodiless heads you see sometimes in circus sideshows, it is as though I have been surrounded by mirrors of hard, distorting glass. When they approach me, they see only my surroundings, themselves, or figments of their imagination—indeed, everything and anything except me.

Ralph Ellison, Invisible Man

Have you ever felt invisible? Where people didn’t see you or hear you? How did this feel?

In the above passage from his acclaimed novel Invisible Man, Ralph Ellison captures how human beings, at our core, want to be seen. We want our experiences validated, and we want to know that our voices matter. But what happens when you are invisible? What happens when individuals, organizations, or even entire professions don’t see you, or can’t (or won’t) hear you?

During the past five years, I have had the opportunity to meet and hear from many people who felt invisible. These individuals are among the 40 million family caregivers in the United States who are providing unpaid care to a parent, spouse, partner, friend or neighbor. I’ve spoken with caregivers who have a full range of stories to tell, from a son caring for his aging father receiving hospice care at home to a 20-year-old woman struggling to care for her mother with cancer while taking college classes. At the same time she is working to pay the mortgage, trying (and failing) to keep up with other bills and ultimately having the utilities shut off. When you’re trying to keep someone comfortable, out of pain or even alive with no one to turn to or learn from, you feel invisible.

Each of the 40 million family caregivers in the United States have their unique stories, as they help their loved ones with everyday activities and personal tasks ranging from bathing, dressing, wound care and medication management to transportation, finance and more. These caregivers, who are doing selfless work in taking care of a loved one, in many cases suffer silently as they set aside their own basic needs to care for someone else.

Being an unpaid family caregiver can be hard work. It is often stressful and intimidating. (Unless you have received professional training, who among us is an expert in wound care, tube feedings, nutrition, dementia work-arounds or the many other tasks family caregivers have to take on, often with little warning?)

The root of invisibility

Invisibility stems from many sources, even from popular assumption. Women have long been known to be the primary family caregivers—whether raising children or taking care of grandpa. They’ve performed heroically in those roles, and men can learn a lot from what they’ve done and how they’ve balanced their lives. Today men represent 4 out of 10 (or 16 million) unpaid American family caregivers. They are husbands taking care of spouses or partners, sons taking care of Mom or Dad, friends taking care of neighbors. These men are breaking stereotypes and upending misconceptions. They are joining, either by choice or necessity, the army of family caregivers providing care across this country.

Invisibility can also result from age—in this case, younger age. In addition to men finding their way through this caregiving maze, today in the U.S. 10 million Millennials care for a family member who is ill, has a disability, or needs help with daily activities. While press depictions may cause us to assume the minds of all Millennials are exclusively on their next travel destination, which new restaurant to Instagram or the hot new app or meme they’ve created, 10 million of them devote large chunks of their lives to overseeing medical and other care for a family member or friend. They don’t necessarily get the chance to hit the latest trendy restaurant, plan exciting trips or “swipe right” to find love (a Tinder thing, for those who don’t know). Instead, they are learning the hard way about things like cancer, disability, insurance and personal finance. And like male caregivers, these Millennials, as they slowly bust stereotypes, feel invisible to their peers.

Meanwhile, both Millennial caregivers and male caregivers of all ages are invisible to our broader society, for as they quietly care for their loved ones at home, they remain veiled behind stereotypes that hide the heroic role they play.

Feeling invisible and not having people understand what it’s like to be a family caregiver—male, female, young, old—can be a lonely experience. And a frustrating one.

Joining in the work

Through my work here at AARP, I seek to help break outdated stereotypes and help people to understand that what they’d assumed was unusual is actually usual. After all, our nation’s demographics are shifting, family sizes are shrinking and more men and Millennials are taking on a role that’s often unfamiliar to them. They are stepping up to the plate in record numbers. They need our help. In addition to publishing groundbreaking reports, we’ve released a series of videos to highlight their experiences and amplify their voices: whether it’s a Millennial caring for his wife and young daughter, a partner sharing the challenges and triumphs of caring for a terminally ill partner, a traditional-style support group for African American male family caregivers, and an organization that supports male family caregivers of partners with terminal illness, it is time to expand our understanding of who is a family caregiver. Men and Millennials are a growing segment of family caregivers.

I hope you will see them, hear them, and let them know that what they have to say matters. And as we do this, we will help to make the invisible visible. We will help to make what all too often is considered unusual to be usual.

Jean C. Accius, Ph.D., is senior vice president of Thought Leadership and International Affairs at AARP, in Washington, D.C. Learn more about resources to support family caregivers who are performing medical and nursing tasks by visiting the AARP Public Policy Institute Home Alone Alliance site: www.aarp.org/ppi/initiatives/home-alone-alliance/.