I Knew the Data on Caregivers. My Stroke Made It Real

Originally published in Newsweek

By Rajeev Ramchand

Last November—about three months after I’d suffered a stroke—my husband, Patrick, finally told me about the toll it was taking on him. What was hardest, I learned, wasn’t managing my functional limitations or nerve pain. It was the emotional weight. Friends would visit and I would smile and laugh only to break down in tears as soon as the door closed behind them.

That was heavy. And I, of all people, should have known it.

Caregiving is something I have studied for years. In 2014, my colleague Terri Tanielian and I led a massive study in partnership with the Elizabeth Dole Foundation, coining the term “hidden heroes” to refer to those who care for ill and injured veterans and military personnel. We revisited the study in 2024, and I’ve testified before Congress on the unrecognized work of caregivers, the value of the support they provide and the toll caregiving takes—socially, financially and emotionally.

These credentials made me an expert on caregivers and caregiving. But it took having a stroke to drive home how hidden some aspects of caregiving remain.

My stroke occurred during a work trip to Nashville in September 2025. Patrick flew out to be with me, and at first, he was my source of comfort and stability. But very quickly he had to also become a logistician: How were we going to get home? How were we going to pay for it? And where were we going to go?

I was of no help: The stroke had rendered me functionally illiterate.

We made it back to Washington, D.C. 10 days later. Patrick went to our home and reunited with our dog Parker while I went to a rehab hospital where I relearned how to walk, bathe myself, and read and write. While I appreciated and engaged in all the care, there was nothing I wanted more than to go home. See Parker. Sleep in our bed.

I now realize that the days I spent in the rehab hospital were the last moments of peace Patrick had. He’s now one of the 105 million caregivers in America: a number that my colleagues and I estimated in 2024. Although most people think of caregivers as adult children caring for their aging parents, nearly a quarter of them—over 25 million U.S. adults—are, like Patrick, caring for an ill, injured or wounded spouse.

In a survey of caregivers for my 2024 research, we asked how much time per week they spend caregiving. Perhaps the better question is: When are they not?

Patrick coordinates every minute of every day. He takes me to appointments and makes sure I don’t fall in the shower. He keeps me safe from tripping on errant dog toys. He coordinates visits from family and friends. He makes sense of the barrage of medical bills, keeps track of prescriptions, and helps me with physical, occupational and speech therapy. Cooking is less efficient because part of my therapy entails helping with the preparation. “Let me try to do that,” I request and then, if it’s a bad day, I am defeated and he’s left to pick up both my and the dish’s pieces.

Maybe I could count the hours these caregiving tasks take. It would still be almost impossible to enumerate the emotional support Patrick provides for me. In the five months since my stroke, Patrick has seen me cry more than in the previous 25 years of our life together. I pose to him questions impossible to answer: Why do I still hurt so much? Why can’t I remember the name of the show we saw last night? Why is it so cold in Washington, D.C.? For these questions, on repeat in our home, all Patrick can do is listen, put his arms around me, and encourage me to keep fighting. He reminds me that I’m on the path to recovery, albeit one that is nonlinear and quite rocky.

February 20 is National Caregiver Day, a day that tries to shine light on America’s caregivers like Patrick. The Elizabeth Dole Foundation, AARP, the Caregiving Action Alliance and National Alliance for Caregiving all have policy recommendations to improve the welfare of caregivers. We did, too, in our 2024 report. My stroke has crystallized the importance of two.

First, policy is needed to help caregivers stave off the economic burden of caregiving. The stroke saw a cut to my income, and caregiving limited the hours Patrick could work. Yet our rent and utility bills didn’t change and we were hit with thousands of dollars in medical bills. Our 2024 study estimated that on average caregivers forgo $4,500 of income and spend about $8,000 more per year related to their caregiving. The proposed federal Credit for Caring Act would offer a new family tax credit to offset some of these costs.

The U.S. also needs to make the transfer of health data across the estimated 600 electronic health records systems seamless. I received acute care for my stroke in Nashville, ongoing management in Washington, D.C., and specialty care in Baltimore. Tests identified where in my brain the stroke occurred, its size, and what did and didn’t cause it—important information that not all my providers had access to. My doctors routinely ask for tests and data collected elsewhere and it is Patrick who has to fill out lengthy forms to get it. I think we would both be happier if this time could instead be focused on helping me get better.

I usually fall asleep at night with Patrick by my side. Then he gets up to finish doing the dishes, wrap up work, or relax watching “All Creatures Great and Small.”

Sometimes, if I wake up later as he’s slipping back under the covers, I remember how hidden caregivers really are, and how lucky I am to sleep next to a hero.

Rajeev Ramchand, a behavioral scientist at RAND and codirector of the RAND Epstein Family Veterans Policy Research Institute, studies mental health and substance use disorders with a primary focus on suicide and suicide prevention and caregiving.

All views expressed in this article are the author's own.