“도와주세요!” (“Help me, please!”)
My mom yelped as her right leg rested on the back door of my car. The urgent cry for help unsettled me—she used an extreme honorific, as if calling for assistance from a stranger or a child pleading for safety from an adult. Surely, she wasn’t addressing her daughter like that – unless she was confused again.
I turned from the driver’s seat to see what was happening. I had expected her to be slow and unsteady since her skull base resection for meningioma a few years ago, but I had parked close to the sidewalk, thinking she would be able to climb into the car as she had before.
“My right leg! Why isn’t it lifting?”
This was new. She had never frozen like this before, as if struck by a spell locking her in place. Mid-step, mid-motion, she was stuck—her body refusing to move, her mind trapped in fear.
At home, I prepared every meal, assisted her in the bathroom, and set up her showers—placing a chair inside the tub, another outside so she could sit while slowly undressing. I checked that the grab bars were secure, laid the showerhead on the floor, and reminded her once more: the gray pump for shampoo, the white for conditioner, the orange for body wash. If we left the house, I walked into the public bathroom stall with her.
Caregiving blurred the boundaries of my identity, a reality many caregivers face. I had cared for my mother full-time for only a few months, yet it consumed me – physically, mentally, and emotionally. Even in that short time, I felt the weight of its relentless demands. It was just a glimpse into the reality of long-term caregivers, who shoulder this responsibility constantly for years with little reprieve.
Caregivers are an integral part of the healthcare system, working alongside physicians to support patients. While they do not provide formal medical assessments or treatment plans, their role extends across multiple dimensions of care. They assist with physical needs, such as activities of daily living and medication management; psychological support, offering emotional reassurance; financial responsibilities, including paying medical bills; and social coordination, such as arranging or accompanying patients to appointments (1,4). Given the breadth of these responsibilities, it is unsurprising that caregiving often leads to significant physical, emotional, and financial strain (2).
The toll of caregiving is well-documented (1-4). Research indicates that caregivers face higher risks of poor self-care, social isolation, anxiety, depression, and even increased mortality rates (1-2). Despite their crucial contributions, informal caregivers remain largely overlooked in both medical treatment plans and healthcare education. While burnout among physicians and nurses (“formal caregivers”) has been extensively studied, informal caregiver burnout remains underrecognized and under-researched.
For example, current research on caregiving has primarily focused on specific groups, such as those caring for individuals with dementia or cancer (5,6). Additionally, much of the existing literature centers on spousal caregivers, leaving significant gaps in understanding the broader caregiving population (3).
Young caregivers, such as millennials and adult children of patients, represent a growing and diverse demographic with unique challenges distinct from traditional elder or spousal caregivers. Their caregiving responsibilities often interfere with critical life transitions, such as completing education, establishing careers, forming relationships, and achieving financial stability (3). An estimated 11 million caregivers in the U.S. belong to the “sandwich generation,” simultaneously caring for both their own children and aging parents—further compounding their emotional and financial burdens (3). The strain of these responsibilities can limit social engagement, restrict access to caregiver resources, and lead to feelings of isolation and emotional distress (1,3-4).
In the U.S. alone, the economic value of informal caregiving surpasses that of formal healthcare providers (1). Yet, caregivers continue to navigate these burdens with little systemic support. Addressing caregiver burnout requires a shift in medical education and policy—one that acknowledges and integrates caregivers into the broader healthcare framework, ensuring they receive the recognition, resources, and assistance they desperately need.
As a medical student, I am training to care for others—but nothing prepared me for the realities of caregiving at home.
In medicine, we are taught to diagnose and treat illness, yet the silent suffering of caregivers—those who shoulder the weight of healing outside hospital walls—remains unseen, unspoken, and unsupported. Recognizing their role is only the first step; the next is ensuring they receive the education, resources, and compassion they, too, deserve.
References
1. Loo YX, Yan S, Low LL. Caregiver burden and its prevalence, measurement scales, predictive factors and impact: a review with an Asian perspective. Singapore Med J. 2022 Oct;63(10):593-603. doi: 10.11622/smedj.2021033. Epub 2021 Apr 16. PMID: 33866708; PMCID: PMC9728322.
2. Del-Pino-Casado R, Priego-Cubero E, López-Martínez C, Orgeta V. Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis. PLoS One. 2021 Mar 1;16(3):e0247143. doi: 10.1371/journal.pone.0247143. PMID: 33647035; PMCID: PMC7920375.
3. Utz RL, Warner EL. Caregiver burden among diverse caregivers. Cancer. 2022 May 15;128(10):1904-1906. doi: 10.1002/cncr.34171. Epub 2022 Mar 14. PMID: 35285941; PMCID: PMC9038644.
4. Fenton ATHR, Keating NL, Ornstein KA, et al. Comparing adult-child and spousal caregiver burden and potential contributors. Cancer. 2022; 128: 2015-2024 doi: 10.1002/cncr.34164.
5.Wang Z, Ma C, Han H, He R, Zhou L, Liang R, Yu H. Caregiver burden in Alzheimer’s disease: Moderation effects of social support and mediation effects of positive aspects of caregiving. Int J Geriatr Psychiatry. 2018 Jun 1. doi: 10.1002/gps.4910. Epub ahead of print. PMID: 29856091.
6. Perez-Ordóñez F, Frías-Osuna A, Romero-Rodríguez Y, Del-Pino-Casado R. Coping strategies and anxiety in caregivers of palliative cancer patients. Eur J Cancer Care (Engl). 2016 Jul;25(4):600-7. doi: 10.1111/ecc.12507. Epub 2016 Apr 21. PMID: 27099167.
Hanna Kim
Hanna Kim is a third-year medical student at the University of Arizona College of Medicine – Phoenix. She appreciates writing for its powerful ability to heal and enjoys exploring the intersection of medicine and patient storytelling. Outside of studying and clinical rotations, Hanna loves getting creative in the kitchen—whether it’s testing new recipes for a fun gathering or perfecting her meal prep skills—and exploring Arizona’s beautiful hiking trails (when it's below 100 F!). She welcomes connections and can be reached at hannakim1@arizona.edu.