Behind the Scenes: What Cancer Caregivers Really Go Through
The role of a caregiver — and everything that goes along with it — is hard to put into words. It’s both incredibly difficult and (sometimes) rewarding. In the cancer world, the focus often stays on the person with cancer, and it’s easy for caregivers to feel like they have to downplay their own needs. But you matter. And when that’s recognized, everyone feels better. When caregivers feel less stressed and have the support they need, the person they’re caring for also benefits. In other words, when they can care for themselves, they can care for their person. So understanding what it looks like to be a caregiver can be incredibly helpful for them and the people around them.
The Caregiving Experience
When people think about all of the ways a caregiver could provide support to someone with cancer, they likely haven’t even scratched the surface. It often means taking them to and from appointments (and keeping track of what the medical team says), providing emotional support (while managing your own feelings), keeping the household running, navigating work, finances, and insurance companies — and so much more. It’s also true that it’s difficult to understand just how long cancer treatment can last, so your friendly neighbor may not realize that coming home doesn’t necessarily mean the uncertainty and healing are over. You may find yourself needing to monitor your person for fevers or other signs of infection, helping with drains after surgery, keeping the house clean, and just gaining a whole bunch of medical knowledge you may not have had before.
And while we’re here, let’s tackle that emotional piece. Because it’s pretty common for emotions to be up and down throughout the cancer journey. Hearing the diagnosis is obviously an emotional time, but things can also change pretty rapidly during treatment and afterwards too. And sometimes, that can end up being a good thing! You might spend one day worried or sad about your person’s future or a specific symptom — and then feel immense relief or hope the next day when their scans look stable or show that the treatment is working. You might also wonder if you’re “doing it right.” A lot of people have this idea of how a caregiver “should” be: nurturing, calm, slow to become frustrated, knows or figures out how to handle emergencies and tough emotions without falling apart. But there really is no such thing as an ideal caregiver. You give what you can and that looks different for everyone.
A Huge Change That We Should Talk About
There are some experiences you are more likely to run into than others, such as role changes. Before, you may have fit squarely into that role of a parent, partner, friend, etc. to the person you’re caring for. Then the caregiver role gets added on top of who you were before, and things can start to look pretty different. For example:
Parents: You’ve definitely been a caregiver for your child already, but cancer feels totally different. Your child may move back in and need you to do things for them that you haven’t done in a long time. You might find it hard to figure out just how much you should step in, whether that’s at home or in appointments. Like how much do you speak up, especially if they’re reluctant to do so themselves or just tend to leave things out that you feel are important? How do you support them as you watch their dreams change, sometimes in ways that are heartbreaking? How do you let go again when treatment is over?
Partners: This is also a tough one. The support your partner gave to you when they were healthy may not be the same, while the amount of support you give increases a lot. When I’ve met with married caregivers especially, there’s this general idea that even though they really meant “in sickness and in health,” they couldn’t have imagined what it would actually be like. And that includes the fear that the person they finally want to be with could be taken away or changed forever. For those who have kids, there are added worries, like what life might be like if your partner’s cancer worsens. It’s incredibly painful to think about, let alone say these things out loud and — in my experience — many caregivers just…don’t.
Siblings: This is a really unique kind of caregiver. For the most part, siblings tend to be part of a group of caregivers, instead of the only one. But that doesn’t mean the responsibilities are any less intense. If there are multiple siblings, one might find that they’re the one who takes on more of the burden — and that can be very frustrating. Honestly, I think this article by Rebecca Gebert explains how it feels to be this kind of caregiver so much better than I ever could.
There are other kinds of caregivers as well, like friends or neighbors. Much of what’s above also applies to them. And let’s give space to the people who are “reluctant caregivers” too. You may be doing this out of duty and that’s ok. It’s no less of a sacrifice. What’s more, even those who wouldn’t think they fit this label at the beginning might find themselves in it at some point.
What I Want Caregivers to Know
It may feel like what you all do is hidden from the outside world. I can tell you that inside cancer centers, the clinicians, researchers, and other staff — we see you. You don’t always get the recognition you deserve, but more people are realizing that your person will heal best with you beside them. We’re working on ways to make sure that you can be there. Help for caregivers to prepare them for what they might face and how to navigate it is growing. At many cancer centers, chaplains are available for caregivers, no matter your faith (and that includes atheists). Social workers can also provide practical support, like information on how to talk to your children about what’s happening and what to do with caregiver burnout.
But, as always, caregivers are the ones who can tell us best what they really need. So leave a comment below if you’ve got something to say. And check out Dr. Allison Applebaum, a psychologist who’s been on both sides: as a caregiver herself and as someone who’s worked with caregivers.
References:
Note: Some of the articles below are research papers, so they may be harder to understand if you’re not used to academic writing.
American Cancer Society (2023, October 10). What Is a Cancer Caregiver?
https://www.cancer.org/cancer/caregivers/what-a-caregiver-does/who-and-what-are-caregivers.html
Memorial Sloan Kettering Cancer Center (2024, March 20). Advice and Support for Cancer Caregivers.https://www.mskcc.org/podcasts/cancer-straight-talk/advice-and-support-for-cancer-caregivers
National Cancer Institute (2025, February 3). Support for Caregivers of Cancer Patients.
https://www.cancer.gov/about-cancer/coping/caregiver-support
Applebaum A. J. (2022). There is nothing informal about caregiving. Palliative & supportive care, 20(5), 621–622. https://doi.org/10.1017/S1478951522001092
Applebaum, A. J., & Breitbart, W. (2013). Care for the cancer caregiver: a systematic review. Palliative & supportive care, 11(3), 231–252. https://doi.org/10.1017/S1478951512000594
Dang, S., Looijmans, A., Ferraris, G., Lamura, G., & Hagedoorn, M. (2022). Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review. Frontiers in psychology, 13, 832974.https://doi.org/10.3389/fpsyg.2022.832974
Gebert R. R. (2023). The others: Siblings are caregivers, too. Palliative & supportive care, 21(4), 567–569. https://doi.org/10.1017/S1478951523000470
Litzelman K. (2019). Caregiver Well-being and the Quality of Cancer Care. Seminars in oncology nursing, 35(4), 348–353. https://doi.org/10.1016/j.soncn.2019.06.006
Mullis, M. D., Bylund, C. L., Bagautdinova, D., Bryan, E. G., Sae-Hau, M., Weiss, E. S., Lagmay, J. P., & Fisher, C. L. (2025). “Somewhat of an Adult”: Understanding the “Dance” of Competing Tensions Parents Manage While Caring for an Adolescent or Young Adult (AYA) Diagnosed with Hematologic Malignancy. Cancers, 17(8), 1299. https://doi.org/10.3390/cancers17081299
Reuvers, M. J. P., Gedik, A., Way, K. M., Elbersen-van de Stadt, S. M., van der Graaf, W. T. A., & Husson, O. (2023). Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs. Cancers, 15(12), 3263. https://doi.org/10.3390/cancers15123263
Shin, J. Y., Kang, T. I., Noll, R. B., & Choi, S. W. (2018). Supporting Caregivers of Patients With Cancer: A Summary of Technology-Mediated Interventions and Future Directions. American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting, 38, 838–849.https://doi.org/10.1200/EDBK_201397