TURNING UP THE VOLUME ON THE CAREGIVING CRISIS

Letters in the Clearing — An update, five years further down the road.

Even after twenty years working alongside surgeons and clinicians across every specialty and family scenario I could imagine, there were two things I knew nothing about — caregiving and Alzheimer’s. My father died suddenly of a heart attack at sixty-two; it shook my mother and me to the core. An only child raised in New Orleans, close to both my parents, I never imagined a future without them, and I had certainly not processed a life spent caring for my mom. One thing life teaches all of us: how quickly the path we had in mind can change.

I wrote the first version of this article years ago, in the thick of my own caregiving season. I’m writing this update from further down the road — my mother has been gone five years now, and the data has only grown louder. My purpose here hasn’t changed: to elevate education, raise awareness, share caregiving’s reverberating impact, and heighten the pitch so we build real support — locally, regionally, and nationally.

To find language for what may have been lived, carried, or witnessed without being fully named.

The Numbers Have Grown

The National Alliance for Caregiving (NAC) and AARP define a caregiver as someone who provides direct, ongoing care — for a child, an aging parent, a spouse, a friend. Caregivers can be formal (paid, like nurses, therapists, and companion sitters) or informal (unpaid — family and friends, the overwhelming majority of us).

When I first wrote this piece, the figure stood at 43 million unpaid caregivers. The newest Caregiving in the U.S. 2025 report, released jointly by AARP and NAC, puts that number at 63 million Americans — nearly one in four adults — a 45 percent increase, almost 20 million more caregivers than a decade ago. Fifty-nine million of us are caring for an adult; the rest are caring for a child with a complex medical condition or disability. Nearly one in four caregivers report providing forty or more hours of care a week. That is a full-time, unpaid, unclocked job, layered on top of every other role we already carry.

And for the piece of this story that is my story — Alzheimer’s and dementia — the Alzheimer’s Association’s newest facts and figures report tells us that more than 12 million unpaid family caregivers provided an estimated 19.6 billion hours of care in a single year, valued at more than $446 billion. Nearly 7.4 million Americans are living with Alzheimer’s right now. Behind almost every one of them is a person like me — untrained, unpaid, and undone by love.

What I Didn’t Have Language For

I had no earthly idea what caregiving would cost me — spiritually, emotionally, mentally, relationally, and economically. From 2010 to my mother’s death in 2021, and now five years further into this new reality, the imprint remains. My caregiving role ended, but restarting a life shaped by that role did not feel like resuming — it felt like reimagining. Research bears this out: even after a loved one dies, a caregiver’s entire perspective and path forward has to be rebuilt and supported, not simply released.

I am not alone. Caregivers across this country carry versions of the same story, and now we have language and data to describe what so many of us lived without words for.

Emotionally, the picture is sobering. A recent joint brief from the National Alliance for Caregiving and NAMI found nearly two-thirds of caregivers — 64 percent — report moderate to high emotional stress, and one in four feels alone, up from one in five just a few years earlier. On average, caregivers report seven poor mental health days a month, and four days when their own health keeps them from doing what they need to do. A separate 2025 survey found that 78 percent of caregivers describe feeling burned out, often weekly or daily.

Spiritually, the toll is just as real, though it’s spoken about far less. Researchers at Baylor University’s Diana R. Garland School of Social Work have found that caregivers with a strong, sustained connection to the sacred report fewer symptoms of depression, more positive perceptions of the caregiving experience, and greater resilience — but that same body of research shows many caregivers also move through genuine spiritual struggle: anger toward God, a felt distance from faith, a crisis of meaning in the middle of the mundane, exhausting work of caregiving. Both are true at once. Caregiving can deepen your faith and threaten to hollow it out — sometimes in the same week.

Relationally, caregiving reshapes every bond around it. Nearly a third of today’s caregivers are part of the “sandwich generation,” raising children under eighteen while also caring for an aging loved one — a share that climbs even higher among caregivers under fifty. Studies show that whether a caregiver feels they had a real choice in taking on the role is one of the strongest predictors of how much emotional strain they carry. Marriages bend under the redistribution of time and attention. Friendships quiet. Siblings disagree about care decisions in ways that can outlast the caregiving season itself. And yet — this is worth saying clearly — more than half of caregivers, 51 percent, also report that the role gives them a sense of purpose and meaning. Burden and blessing are not opposites here. They live in the same body.

A Deficit We Can See Coming

The Global Coalition on Aging has been telling us for years that as the U.S. population ages — with baby boomers turning sixty-five at a rate of roughly 10,000 people a day — we are heading toward a serious deficit in formal caregiving support. This isn’t abstract to me. I watched this exact difficulty intensify in real time as my mother’s illness progressed between 2019 and 2021. Hiring paid caregiving support is on pace to become nearly impossible for countless families within the next several years. That timeline hasn’t gotten friendlier since I first wrote about it — it’s gotten shorter.

This is why raising awareness isn’t enough on its own. It is crucial that we build caregiver-focused systems of support: education, expanded respite care, accessible mental health services, caregiver advocacy, and — the piece so often left out — spiritual and emotional care woven into our communities, our faith organizations, our local governments, and our healthcare systems.

What I Keep Coming Back To

I didn’t write this to hand you a list of statistics and walk away. I wrote it because I remember exactly what it felt like to have no name for what I was living — and how much it helped, eventually, to find out I wasn’t the only one.

Something is taking shape this October in New Orleans — QAVAH, a word that means to wait, to hope, to be bound together in expectation. It’s the same word behind the promise that those who wait on the Lord will renew their strength. I’ll share more when it’s ready. For now, I just wanted you to know it’s coming, and that it was born out of exactly what this letter has been about.

If you are in the middle of your own caregiving season, or still carrying what it left behind the way I am, I hope this letter met you honestly. Sixty-three million of us are carrying this. You were never meant to carry it alone.

Sources: AARP & National Alliance for Caregiving, Caregiving in the U.S. 2025; Alzheimer’s Association, 2026 Alzheimer’s Disease Facts and Figures; National Alliance for Caregiving & NAMI joint brief, 2025; A Place for Mom, 2025 Caregiver Survey; Baylor University Diana R. Garland School of Social Work (McGee, Polson, et al.); Global Coalition on Aging.