It Took Getting in Over My Head to Really Understand Caregiving

Editor’s Note: This piece, including some of the more sensitive and private details, were published with the full consent and approval of the writer’s mother, the subject of this article. "More of us are older, living longer than our parents. Our bodies aren't what they used to be. More people will be in this situation. This is just what's going to happen. You need to tell the story,” she told her daughter.

When I flew from the East Coast to Oregon in June to help my sisters take care of our 94-year-old mother who’d just had a stroke, I brought an enormous stack of work along. I imagined myself keeping my hometown hours, rising early, working out and writing before my mother even got up. I packed a second bag full of books I’d been meaning to get to. I even threw in a folder stuffed with financial information, in case I had a free hour or two to finish my taxes. 

Six weeks later, I returned to D.C. with the ambitious pile of work and books untouched — not to mention the taxes. Most nights in Oregon, I was so exhausted, I was lucky to get partway through a mindless movie on my laptop before crashing into a fitful sleep. 

Looking back, I can now say with deep humility that, though I write about work and caregiving for a living, I had no clue how overwhelming, intense, time-consuming, and emotionally draining the work actually is.

The first morning, I rushed into the bedroom to help my proud and fiercely private mother find an adult diaper. We both bore the embarrassment in silence as I inexpertly tried fastening the paper contraption around the soft folds of her body as she stood at her walker. I had never seen my mother naked before. 

Then I had the terrible idea that it would somehow be easier if she were lying down. And 

that’s when I saw firsthand, and with horror, what my sisters liked to call the “Flying Wallenda” — a maneuver my mother uses to get into bed, easing herself onto the edge, locking her walker brakes, then slowly hoisting her one good leg onto the walker seat and using it to propel herself backward, landing cattywampus somewhere in the center of her twin-sized mattress.

From that first day, it was as if I’d crossed some invisible divide, where time moved at an entirely different pace. Everything slowed down. Entire days seemed to disappear. I couldn’t concentrate.

I ran errands that felt both inconsequential and existential, like taking my mother to the physical therapist, who was hoping to teach her a safer way to get into bed. (Naturally, my strong-willed mother was having none of it.) Another day, I found myself in the hardware store trying to assuage my mom’s obsession with her mother’s silver tea service, searching for just the right miniscule nut to keep the tiny decorative acorn in place on the silver sugar bowl lid — a bowl that, incidentally, I don’t recall being used in my lifetime and will likely never be used again. 

When my sisters and I weren’t managing household projects, we spent hours researching fall prevention devices — my sister and I variously hurling ourselves to the floor to test their efficacy. And In between all that, we dove into my mother’s closets, organizing the jumble of clothes, and cleaning out piles of old papers, catalogues and junk. I created a special box for all of her old Christmas card lists and the teeny-tiny return addresses she cuts out of envelopes and can’t let go of, even as she sighs that this person has moved away or that one has died. 

We knew that despite her stroke, she wanted to leave her home only when taken out “feet first,” as she liked to put it, as we’d done with my dad several years before. He’d been bedridden for five years after he’d had a stroke of his own, and we’d learned just how outrageously expensive, disruptive and wildly uneven home care could be. So this time, we focused on the more crucial tasks of hiring and onboarding new caregivers. I drafted schedules and created digital shift forms, learning how to use AI to automate the data into a dashboard. I wrote exacting job descriptions: Ensure Ruth takes her morning and evening medication. (Mom’s stroke came after she’d decided to stop taking her blood thinner medication for four days without telling anyone.) 

There were days I marveled at how impossibly complicated the life of one 94-year-old woman could be. The medication box. The bills. The electrician who needed to fix the bathroom floor thermostat to help keep it  dry after her showers so she wouldn’t slip and fall. We also needed to find people to prune the apple and plum trees in her yard that were dropping fruit on the sidewalk, making her liable for $1,000 fines in her fussy retirement community. There were trips to the bank; power of attorney documents to sign. Waiting on hold to schedule doctor’s appointments often felt like its own full-time job.

Every day brought a new crisis: A forgotten name, a lost purse, a blank check my mother had handed over to a  caregiver to fill out herself. Just hours after my plane took off to return to D.C., from 30,000 feet in the air, I learned that, despite all our precautions, mom had slipped and fallen in the shower, and broken her arm.

As the one daughter  who doesn’t live close by, I’d always felt guilty that I didn’t do enough. I think that is why, in that strange, timeless dimension, I often moved too fast, prioritizing crossing tasks off my to-do list without understanding that sometimes, things were too complicated to do quickly. I’m still learning that the spiraling items on that list aren’t really what matter, in the end. 

In all of this, there were certainly moments of joy — nights when we’d take our dinner outside and watch for hummingbirds, savoring the long dusky summer evenings of the Pacific Northwest. A joyful family wedding. There were times when it felt like my bubbly, effervescent mother had returned out of the post-stroke fog, and we’d sip ice-cold Manhattans, our family’s drink of choice.

But even in those moments, it was hard.

As my work deadlines passed, un-met, and my email, Slack, text, phone, and social media messages piled up, I said a silent thanks for having flexible work; a team that gave me grace; for sisters willing to put their own lives on hold; and for a mother who has the resources to get the extra help she needs. So many people don’t.

Before my trip, I knew, in the abstract, that one in four people in the United States ends up taking care of an aging loved one, and that more of us will become unpaid family caregivers as the population becomes older than it ever has been. I also knew that, by some estimates, women who’ve had to leave the workforce to care for aging loved ones forfeit close to a half a million dollars over their lifetimes in income, social security, and retirement benefits.

But it took getting in over my head for me to really understand what that all meant. “It’s one of those things,” a friend who’d cared for a dying loved one told me the other day, “that, until you experience it, you don’t get it.” 

And that’s the problem. Business leaders who don’t get it make it impossible for people who need to juggle work and caregiving. Policymakers who don’t get it leave most families holding the bag, paying for home care out of pocket, or impoverishing themselves to qualify for Medicaid, since Medicare doesn’t cover long-term home care. And most people don’t get how the system works, or, rather, how it doesn’t work, including that home care agencies charge families $35 to $45 an hour, then pay caregivers half that (or less), making home care workers among  the fastest growing and the poorest paid profession in the U.S. economy. And of course most of the workers are women.

We all deserve better.

I’m sorry I don’t have all the answers on how to do it better. But this much I do know: In the not-too-distant future, I’ll be getting back on a plane to see my mother, to do it all over again.