Caregiving and Work: Boundaries, Benefits, and the Fight for Equity

My dad was diagnosed with lung cancer in 2008. At the time, I was preparing to embark on a new educational journey in a JD/MPH dual degree program. I was living across the country, and had been working for several years in a position classified as "temporary" which just meant I didn't get any benefits.

Getting home to see my family was costly. And my dad's diagnosis shaped my decision about where to go to school. I ultimately decided to stay where I was rooted in Tampa Bay, with a network of friends and found family, given the uncertainty of my dad's illness.

The last trip I made home before he passed was Christmas 2009. I remember giving him his medication, helping him to bathe, feeding him through his G-tube so he could get enough nutrients, and just spending time with him. I created an iPod playlist of Stephen King and Dean R. Koontz books for him to listen to when the tumors spread to his brain and started taking his eyesight.

That was just over a couple of weeks, but my mom and brother were caring for my dad full-time, and there were many days of stress, anxiety, and tears. And, in addition to caring for my dad, they were both working full time and my brother just had his first baby.

However, there were also many beautiful and joyful moments of connection, like seeing my dad hold his first grandchild, playing Wii bowling and Tiger Woods PGA Tour, and spending Christmas together, a holiday my dad loved dearly. We were able to make it through that time as a family thanks to a network of resources and people, including the VA, hospice care, co-workers and colleagues, friends and neighbors.

Our experience is not uncommon. Did you know that 1 in 5 working Americans is a caregiver? Whether for a parent, child, or other family member, so many us have the shared experience of balancing caregiving with our other responsibilities, including work. In light of National Employee Benefits Day (April 2, 2025) this post is about the benefits and needs of caregivers in the workforce.

AARP Caregiving in the U.S. 2020, https://www.aarp.org/ppi/info-2020/caregiving-in-the-united-states.html

Data Highlights

• 👩 According to AARP Research Insights on Caregiving, over 53 million adults in the U.S. are unpaid caregivers, and 61% of them are employed while caregiving.

• 💼 Research from the Harvard Business School reported in The Caring Company (2019) shows that while only 24% of employers say that worker performance is impacted by caregiving responsibilities, more than 80% of employees with caregiving responsibilities said that their productivity is impacted some, most, or all of the time.

• 👶 A report by the National Women's Law Center, A Lifetime's Worth of Benefits: The Effects of Affordable, High-quality Child Care on Family Income, the Gender Earnings Gap, and Women’s Retirement Security (March 2021), explored that impact of caregiving on women—especially women of color—who are more likely to reduce their work hours or exit the workforce due to caregiving responsibilities.

J.B. Fuller and M. Raman, The Caring Company: How Employers Can Cut Costs And Boost Productivity By Helping Employees Manage Caregiving Needs, Harvard Business School, Managing the Future of Work Project.

Equity & Inclusion

• 🏳‍🌈Recognition of LGBTQ+ Caregivers and Chosen Families: LGBTQ+ caregivers, particularly those caring for chosen family, often lack recognition under traditional workplace policies, resulting in inadequate support and benefits (Center for Health Care Strategies).

• 💸 Long-Term Economic Effects on Women: Caregiving responsibilities can lead to significant long-term economic consequences for women, including lost wages, reduced retirement savings, and hindered career progression (the TIAA Institute).

• 👩🏽 Exclusion of Disabled Caregivers and Care Recipients in Workplace Policies: Disabled caregivers and those receiving care frequently encounter workplace policies that fail to accommodate their needs, reflecting systemic ableism and a lack of inclusive practices (National Partnership for Women & Families).

Boundary Highlight

Caregiving challenges our physical, emotional, and time boundaries. According to the AARP research linked above, the biggest challenges to caregivers and time ⌚ and money 💰. When workplaces don’t recognize caregiving needs, employees are forced to stretch beyond their limits—working irregular hours or schedules, skipping breaks, or showing up when exhausted.

Setting boundaries around caregiving might mean:

• 📧 Saying no to after-hours emails

• 💬 Negotiating your workload

• 🌴 Taking leave without guilt

• 📅 Asking for flexibility, even when it feels risky

Bipartisan Policy Center, State Paid Family Leave Laws Across the U.S., https://bipartisanpolicy.org/explainer/state-paid-family-leave-laws-across-the-u-s/

Law & Policy

• 🌎 The U.S. is the only wealthy country without national paid family leave.

• 📜 The Family and Medical Leave Act (FMLA) provides unpaid leave for qualifying family care—but only covers about 60% of the workforce (U.S. Department of Labor).

• 💼 The Pregnant Workers Fairness Act (2023) allows reasonable accomodations for workers impacted by pregnancy, childbirth, and related medical issues (National Women's Law Center).

• 🏛 Some states (e.g., California, New York, Massachusetts) have implemented state-level paid family leave programs—but coverage and eligibility vary widely.

• 🛑 Caregiver discrimination is not explicitly protected under federal employment law, though EEOC guidance recognizes that such discrimination could violate existing federal anti-discrimination laws, especially if based on sex-based stereotypes (e.g., assuming women should be primary caregivers), pregnancy or caregiving responsibilities affecting employment decisions, or is associated with a person who has a disability.

• 💸 Wage Increases for Caregivers: In Nevada, legislative efforts have led to significant wage increases for home health care workers. This has contributed to workforce growth and improved retention rates. However, caregivers continue to advocate for a $20 minimum wage to better reflect the demands and importance of their roles.

Take Action

✅ Individual Actions --> What You Can Do

• Name caregiving as a boundary you’re allowed to protect—whether that’s requesting time off, declining extra work, or being open about your needs.

• Connect with other caregivers for emotional support or advocacy within your workplace. Check out this post by my fellow Stetson Law grad Sushil Emerick about her experience as an elder caregiver, and connect with a Caregiver Recovery Support Group (email caregiverrecovery@gmail.com for more information)

🏢 Workplace Actions --> How Employers Can Help

• Normalize flexibility and predictability, especially for scheduling and deadlines.

• Expand your definition of family in leave and benefit policies.

• Train managers on how to support caregiving employees with empathy and consistency.

• Measure your organization's care demographics including the economics behind caregiver benefits and explore what benefits employees actually value.

🌎 Systemic Actions --> Advocate for Long-Term Change

• Advocate for national paid family and medical leave, and for expanding FMLA protections.

• Support legislation that explicitly protects caregivers from discrimination.

• Invest in the care economy—accessible childcare, elder care, and support for paid and unpaid caregivers.

📖Today's Quote is shared from the Rosalynn Carter Institute for Caregivers.

💬 Your Turn!

How have you been impacted by caregiving, and what resources have been helpful to you? Share it with the community!