group of millennials having a bonfire on the beach and talking

I hate when people ask me what I do. You know what I mean, when someone at a party turns to you and asks ‘so what do you do?’ and they’re just asking to pass time. Or maybe they’re deciding if I’d be a useful LinkedIn connection or maybe this is a first date that’s off to a bad start.

There are several issues with answering this question, one of which is that it often leads to this person getting misty eyed divulging details of their private struggles and then they are embarrassed that they’ve just shared all of this with a complete stranger.

But the first and most common part of this exchange is them looking at me quizzically. Maybe they take a stab at it. ‘Oh, like eldercare?’ and then they think I work at a home healthcare agency. Or that I’m a nanny.

Among professionals in the caregiving space (ie. the field in general, beyond The Caregiver Space) there’s endless debating about why almost no one identifies as a caregiver. Rarely do we discuss the possibility that no one identifies as a caregiver because they don’t know what caregiving is.

Caregiving is for sweet little old ladies

The hundreds of these awkward conversations I’ve had with strangers about what I do have made it abundantly clear that if someone is familiar with the term caregiving, they think it’s something middle class white grandmas do for grandpas. Or maybe moms do it for grandparents. Saintly old ladies who also volunteer at church and bake cookies for their grandkids. The elderly people receiving this care are also sweethearts and if they cause trouble it’s because people with dementia aren’t giving you a hard time, they’re having a hard time.

Because only old people get sick or have accidents or were born with physical differences and apparently you can’t be an asshole past a certain age.

Only white people need care or take care of their own families. All of those underpaid women of color providing grueling hours of home care and staffing nursing homes certainly don’t have obligations to their family and friends.

In fact, people of color are generally invisible from this popular image of caregiving.

The people providing unpaid or underpaid care are certainly never resentful or exhausted or needing care themselves. They’re not real people with their own lives, they exist so someone else can live the best life they can despite these obstacles. They’re angels and this person just doesn’t know how they do it, but thank God they do.

I wish it were a certain type of people who say these incredibly inaccurate things, but these things are just as likely to come out of the mouths as the woker-than-thou intersectional feminist as a conservative man who doesn’t know what it means to be cis-gendered.

You don’t do any caregiving?

I don’t quite understand how it is possible that so many people I encounter do not know what caregiving is. They claim not only that they don’t provide caregiving support, but they don’t know anyone who does. Unless it’s a white woman over the age of 50.

This, despite an era where it seems like everyone identifies as a spoonie or is on the spectrum or has a serious dietary restriction or is on six different medications.

As soon as I ask a few questions, it comes pouring out.

Well, yes, their partner has a chronic disease. Their BFF is recovering from surgery. Their brother has a kid with autism and their sister has a child who is as yet diagnosed. Their dad has a degenerative condition and now needs a mobility aide to get around. They worry about how far they live from their parents, especially as their grandparents need a lot of help.

Everyone can list off a dozen people in their lives who requires caregiving support.

Everyone can detail the ways they arrange their lives to provide that support. The doctors appointments they schedule, attend, and then deal with insurance claims for. So many of these people have moved to a different city or changed jobs to provide care.

But they still don’t know what caregiving is.

Where does this come from?

Every article about the aging of the Baby Boom has a roughly interchangeable paragraph to justify that caregiving is a big issue worth reading about. There are so many more old people, they’re sicker than ever, they’re all broke as fck, they’re divorced and their kids hate them or can’t support themselves. Oh, and everyone is getting ALZ. It’s a looming Crisis with a capital ‘c’.

This has spread awareness of the importance of the Eldercare Crisis. But it’s also spread the idea that caregiving = eldercare. And it looks like the types of people who are in the stock photos and profiled in mainstream articles.

Caregiving is more than eldercare provided by the elderly

Many of the Baby Boomers are still taking care of their own parents, even as they themselves are plagued with chronic illnesses and increasing rates of disabilities.

Before the Baby Boom got old themselves, they waited longer than previous generations to have kids. And as the Boomers get sick or have accidents, they’re surviving it — and needing decades of care. Many of the people providing eldercare for their parents are in their 20s, 30s, and 40s. That’s what happens when you have a kid in your 40s — or when an 80 year old man has a third round of kids with his latest wife.

While Gen X was being born, medical institutions were being shut down and patients were being sent home. For the first time children born with profound medical needs were surviving to adulthood and living out their lives at home, being cared for by family, friends, and aides. Which required shuttling them around to endless appointments and dealing with the accompanying administrative work. The generations after have only known the world of home care.

People who experience traumatic accidents — in actual military conflict, the extreme violence of life in America, and things like car crashes — are more likely to survive with profound injuries. People who would have once died now go through months or years of recovery and often require support for the rest of their lives.

We talk about the military heroes; we don’t talk about what happens to people who survive domestic abuse and street violence. We talk about the loving father struggling against a diagnosis; we don’t talk about the people with complicated back stories who face a similar diagnosis. We talk about miraculous recoveries; we don’t talk about the team of people and the sacrifices they make to make miracles possible.

We all provide care

When I was 30, I married a woman who I knew was chronically ill and had a disability that would likely limit her mobility more and more over time. Her health dictated much of our day-to-day lives, even if she required virtually no hands-on care. Life was lived between doctors appointments and included the erratic behavioral changes and side effects brought about by desperate attempts to find medications that worked. Every aspect of our future centered on guesses about the care she would one day need and how to continue to live a life we found meaningful despite that. It was strange to break up and suddenly have my future no longer restricted by her health.

Before that I failed at navigating a partner’s gender transition. The nightmare of struggling to access and pay for healthcare was far worse than explaining the situation to our families and friends.

Within the first few dates there is almost always the disclosure — or casual reference to — either their health issues or information about the caregiving support they provide to important people in their lives. The invisible disability. The family history of a debilitating disease. The sibling they will one day oversee full-time care for. The parent whose remission will one day end. The grandparent that might move in with them. The people who tie them to a geographic radius or who they schedule their life around.

I can think of few people in my life who don’t actively provide care or aren’t anticipating providing care in the future.

So few of them realize there’s a word for what they do.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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