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The Invisibility of a Family Caregiver

Jean Accius October 30, 2019
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Have you ever felt invisible? Where people didn’t see you or hear you? How did this feel?

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”

In the above passage from his acclaimed novel “Invisible Man,” Ralph Ellison captures how human beings, at our deepest 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 last 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 with the full range of stories to tell, from a son caring for his aging father receiving hospice care at his home to a 20-year old woman struggling to care for her mother with cancer while trying to take college classes—and at the same time work to pay the mortgage, try (and fail) to keep up with other bills, and ultimately have 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 own 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’s often stressful and intimidating. (Unless you 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 caregiver—whether it’s 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, in fact, represent 4 out of 10 (or 16 million) unpaid American family caregivers.  They are husbands taking care of their 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. That’s right: While depictions in the press may cause us to assume the minds of all Millennials are exclusively on their next travel destination, what 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, they feel their invisibility 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 understand what they’d assumed to be unusual to actually be 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 their 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 a group of male family caregivers of partners with a terminal illness, it’s 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’ll help make the invisible visible. We’ll help make what all too often is considered unusual to be usual.

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Jean Accius

Dr. Jean Accius is a nationally recognized expert on aging policy, livable communities and long-term services and supports (LTSS). He currently serves as the Vice President of the Long-Term Services & Supports and Livable Communities Group within the AARP Public Policy Institute. In this role, he provides strategic direction, thought leadership and technical expertise in leading a team at the forefront of developing innovative policy solutions for livable communities as well as the effective delivery and financing of LTSS.

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