Women's Health November 3, 2025 0 Comments

Behind the Strength: The Hidden Mental and Physical Toll Caregiving Took on One Family You Need to Know About

Ever had one of those moments where life throws a curveball so wild, you almost laugh in disbelief—only to realize it’s not quite that funny? Picture this: it’s April 2004, just two days after I wrapped up my first round of radiation for blood cancer. My wife, Didi, bends down to grab a grocery bag—and bam! This electric shock of pain races down her spine so fierce, she can’t move a muscle. Now, here’s the kicker—she’d never had a whisper of back trouble before my diagnosis six months prior. Was this her body’s way of scripting a dramatic intermission—a bold pause scream after carrying not just bags, but the immense weight of caregiving without a break? Seriously, when you’re in the trenches of caregiving, it’s like running a relentless marathon without a finish line. You just keep moving because, well, what else is there? This isn’t just a tale of personal struggle; it’s a spotlight on what experts call caregiver burden—a heavy, often unseen toll on those holding the lives of others gently, yet desperately, in their hands. Dive into this journey with me, where caregiving shifts from duty to an exhausting dance with physical pain, emotional weight, and the raw, unvarnished truth of what it means to truly be there for someone else. LEARN MORE

On a Sunday in April of 2004, two days after I finished my first round of radiation for blood cancer, my wife Didi went to pick up a grocery bag, and— Zing!—a jolt of pain shot down her spine. That night, she woke me up at 2 a.m. She was crying. She couldn’t move. We called 911, and the paramedics took her to the emergency room, where a doctor gave her painkillers and muscle relaxers and diagnosed her with bulging L5 and L6 discs. She had never had back problems before I was diagnosed, six months earlier. Could you read this as an instance of a woman who had been carrying too heavy a load for too long and finally cracked because she could? Yes, you could.

“It was almost as if my body was taking dramatic action to make me rest, because I finally could since Jon was done with radiation,” she says. “Being deep in caregiving means you just keep putting one foot in front of the other. You don’t stop, you don’t think, you just do. Because what other choice is there?”

Caregiver burden, or caregiver burnout, refers to the ways in which caring for another individual—say, an elderly person or someone who is seriously ill—can weigh on the person providing their care. Allison Applebaum, a clinical psychologist specializing in psycho-oncology and the author of Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving, is an authority on the subject.

While working as a postdoctoral fellow at Memorial Sloan Kettering Cancer Center in 2010, Applebaum came to realize how important caregivers are, how taxing their role can be, and how little support is available. In 2011, she founded the Caregivers Clinic at Sloan Kettering, which provided resources and support for cancer patient caregivers for everything from coping with the shock of a patient’s diagnosis to dealing with their loss. That same year, she became a caregiver herself—for her father, who was eventually diagnosed with Lewy Body disease.

As of 2020, some 53 million Americans identified as caregivers, according to Applebaum, with half providing care to older folks and nearly two-thirds to those with long-term health problems. And an estimated 9 million Americans are “sandwich generation” caregivers, providing care for both children and adults. Caregivers spend an average of four and a half years in their role (with many doing so for more than 10 years) devoting an average of 25 hours per week to tending to the needs of others, Applebaum says. Some spend more than 41 hours per week caregiving—the equivalent of a full-time job. Yet two-thirds of caregivers, she notes, carry out their role while holding down a paying job.

The assistance they provide, Applebaum tells me, ranges from helping with everyday tasks (shopping, housework, and managing finances), to aiding their charges with daily living issues, (getting dressed, showering, and using the bathroom), to performing medical and nursing procedures (taking blood pressure readings, changing bandages, or administering injections). Not only is this crucial role not typically compensated, but caregivers also often incur additional expenses whether from the costs of medical treatment or loss of income. One large study of the direct cost of cancer care alone, Applebaum wrote in Stand by Me, found that patients and their caregivers spend between $180 and $2,600 each month on that care.

As this role consumes significant time and resources, many caregivers experience sadness, fear, anxiety, and feelings of isolation. Those who are forced to put career, family, or other goals aside may also feel resentment, particularly if they feel they had no choice in taking on that role or have a difficult relationship with the person they’re caring for. “That can lead to anger about not being able to plan their life, opportunities lost, and dreams deferred,” says Applebaum.

Like veterans of war and other trauma survivors, caregivers are frequently exposed to situations involving extreme emotional intensity, from receiving news about a diagnosis to taking their charges to the emergency room or witnessing their death, she told me. As a result, caregivers may experience intrusive memories from those events, hypersensitivity to the idea that something may go wrong, and irritability.

It’s no surprise, then, that caregiving is associated with an array of mental health problems, including anxiety, depression, and post-traumatic stress disorder, says Applebaum.

For Didi, “the hardest part of caregiving is you never really let go of it, even when the person is cured or in remission.” Plus, she says, “the desire to manage the other person’s illness is real. I’m always trying to protect Jon from crowds, germs, nosy people, bad moods, etcetera.”

Courtesy of Jonathan Gluck

Jonathan Gluck and his wife, Didi.

Physically, caregiver burden has also been shown to cause significant health issues like high blood pressure, heart disease, decreased immunity, and fatigue. In Stand by Me, Applebaum cites a Swedish study of almost three hundred thousand spousal caregivers of cancer patients. The study, she wrote, found that caregivers had “increased risks of coronary heart disease and stroke that persisted over time, and that such risks were particularly high among caregivers of patients with cancers with high mortality rates, like pancreatic, liver, and lung cancers.” She also cites a study of more than 1,500 caregivers of cancer survivors in the United States where researchers, “identified high rates of heart disease, arthritis, and chronic back pain several years after initial caregiving experiences.” The demands of caregiving may also lead people to neglect their own health and wellness, she told me. “While caregivers are phenomenal at taking care of others, they don’t always prioritize their own needs.”

Like Didi, caregivers often experience problems just as the individuals they’re caring for get better, Applebaum tells me. “It’s often the first time they can take a step back, look at what just happened, and exhale. All the emotions they’ve been holding in check come rushing to the surface.” When I told her what had happened with Didi’s back, she said she has seen many instances like it.

After the incident with her bulging discs, Didi’s back problems became chronic. The smallest misstep or awkward twist could cause days of pain. Sometimes stress alone seemed to be the culprit. More than once her back trouble flared when I was due to be retested or after I received bad medical news. After I was diagnosed, Didi also began to get migraine headaches, sometimes sporadically, other times as often as once a week. At times, they were so bad that she would have to lie in bed with the lights off and a cold washcloth on her forehead or go to the emergency room for IV morphine. Her neurologist told her that migraines might have been caused by family history (migraines are often hereditary), hormonal changes brought on by childbirth, the stress of my diagnosis, or all of the above.

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Although my diagnosis didn’t change the way Didi and I divided our practical responsibilities with our child, A.J. or around the house, my illness saddled Didi with added emotional burdens. She was the person who took on the responsibility of answering questions from family and friends about how I was doing and keeping them informed about what was going on with me. And the prospect of potentially having to raise A.J. as a single parent loomed.

Despite the fact that her husband had cancer, Didi felt as though she had to be cheerful at all times. Not only was she trying to keep up my spirits, for my sake and hers, but we didn’t want A.J. to pick up the feeling that anything was wrong. Didi also had to deal with the anxiety my screening tests brought. Just as I had to await the results, so did she. What’s more, she felt she had to help me manage my anxiety. When she felt sad or scared or angry about my illness, she felt guilty. Given what I was going through, she didn’t feel she had the right to feel sorry for herself.

Didi was late to the whole “caregivers-need-to-take-care-of-themselves” concept, but now knows how essential it is. “Don’t wait as long as I did,” she says. “Even if it feels wrong, hang out with your friends and indulge yourself in whatever way feels best regularly—manicures, long walks with music blaring, wine, whatever it takes. And, if you can swing it, therapy helps.”

This story is adapted from the book An Exercise in Uncertainty: A Memoir of Illness and Hope, by Jonathan Gluck.