Caregiver leave experiences vary widely not just because of the situation, but also how the caregiver’s employer responds. We asked three caregivers to share their experiences.
It starts off like any other day… until you learn your mom’s in the hospital with leukemia, you see bruises on your child’s body that weren’t there the day before, or your husband’s ophthalmologist tells you he’s going to go blind… and suddenly this day will change the rest of your life. That’s exactly what happened to our three brave caregivers who volunteered to share their stories. But given that one in five Americans are caregivers, nearly half of all working adults expressed the need to take a caregiver leave, and most humans need care at some point after being born, it could be any of us.
Despite the overwhelming need, paid caregiver leave is inaccessible for almost 80% of workers, with caregiver leave in general being poorly understood—until you’re suddenly thrown into it. With millions of people leaving the labor market to provide care (and women and Black Americans overrepresented in unpaid caregiving), and untold numbers of caregivers fighting against taboos or struggling in silence at the workplace, employers not only need to come to the table with a competitive policy for caregiving, but also the empathy and expertise to truly support an employee as they go through it.
That’s what prompted us to ask three bold individuals to share their stories of caregiving. In doing so, we hope to empower more individuals to advocate for what they need and break taboos and for employers and colleagues to deliver on that. By speaking openly and honestly, we can uncover ways to be more supportive of the millions of people in caregiving situations nationwide—because after all, they deserve to get taken care of, too.
Though we can’t represent all types of caregivers in just one blog, our three volunteers responded to a range of emergency situations happening to distinct family members, while navigating an array of responses from their employers.
D returned to his native China to care for his mother after she was suddenly diagnosed with leukemia—all while navigating this during the pandemic on a work visa. Starting off on PTO, his employer eventually managed his caregiver leave with Cocoon.
H’s son, covered in unexplained deep bruises one weekend, was diagnosed with the rare blood disorder, aplastic anemia, by the next. Despite her team’s unwavering support and flexible vacation policies, HR was unprepared when it came to the topic of caregiver leave.
What started off as back pain for J’s husband eventually spiraled into discovering three herniated discs, fibromyalgia, and macular degeneration causing blindness. Though their very young son and friends were a stellar support team, J’s employer was not, ultimately leading them to quit, finding a new role at Cocoon.
D: In June of 2021, my mom suddenly got diagnosed with leukemia. I had an emotional breakdown, but then a few hours later, I started booking tickets because I knew I would go back to China and give marrow for a transplant. I didn’t know how I would navigate everything with the pandemic and my work visa… I just knew that I would give up everything in the United States and go home because it’s my mom.
"I didn’t know how I would navigate everything with the pandemic and my work visa… I just knew that I would give up everything in the United States and go home because it’s my mom."
- D
H: Out of nowhere in October of 2017, my husband and I noticed really dark, deep bruises all over my three-year old son that had no apparent cause; and later that night he had a nosebleed. When we took him to the ER, his blood tests showed he basically had no blood cells — an indication of bone marrow failure. After another week in the hospital and a bone marrow biopsy, we finally got the aplastic anemia diagnosis, and we started to talk about a treatment plan. Meanwhile, my son got sicker.
J: I got married in 2019, and after sleeping on my bed for a few months, my husband began to have a lot of back pain. Around the same time, he went in to get his vision checked and found out he had macular degeneration, which causes vision loss. Combined with the back pain, they were worried it could be multiple sclerosis (MS). The tests ruled out MS, but found that he had three herniated discs and fibromyalgia, which runs in his family. It was good to finally get to the bottom of it, but knowing that they’re “forever problems” with no solution meant we would need to drastically restructure our lives.
D: My company was very supportive and told me I could use PTO, which I did for two months. But because of my work visa requirements, we realized we would have to legally shift it to caregiver leave. I didn’t know any of the policies or how to navigate them, so we looked into Cocoon, which helped me navigate California law and filing the paperwork which couldn’t always be done automatically. Meanwhile, my boss reassured me that I shouldn’t worry, that I would have my job, and to focus on my family.
H: On the first day, I told my boss and my HR partner that my son was in the hospital, but that we didn’t have a diagnosis or know how long he would be there. They said all the right things, and I figured our unlimited PTO policy would give me some flexibility while we figured things out. Yet a few days later, I got an email from HR letting me know that my paycheck had been paused, and I was apparently now on unpaid leave. This came as a total shock and added extreme stress to my already impossible situation. It felt like I had no options, and I was just a cog in the machine. Luckily my team was really supportive, and I eventually figured out a partial leave situation with HR, so I could keep working when my son’s health allowed. But I’ll never forget how hard my company dropped the ball when I needed them the most.
J: I was in a job where I had already expressed that we needed more people to handle the workload, and it was really hard to take time off in general. Every time I needed to tell them about my schedule, I got anxious, and didn't feel supported. They didn't remotely bring up the idea of leave and I had no idea there was a paid state program that I could qualify for. Every day off for appointments was a day that I was losing pay and I really couldn't afford it, but it's what we had to do. The pressure was so high at home and at work, and I resented my job for making it so hard to find any kind of balance, so I burnt out, and eventually I quit in 2021.
D: Stressful for sure. There’s always something more to do, and the days go by as you just get through it. I needed to take the best care of my mom, but also myself as a marrow donor. Donating stem cells and bone marrow is so painful. There’s a lot of shots to activate the marrow, and it was hard to sleep. I never dream, but I was having nightmares all the time. It was a fight! My mom was fighting hard, and I was too.
H: My husband and I were balancing a lot—we had a 6 month-old baby at the time as well, so every night one of us would be in the hospital with our son, the other home with our daughter. Luckily we also had a nanny and we both found work a healthy and important outlet, so we found a rhythm that worked for us. Some days we were both at the hospital, and there were really hard and painful days of treatments and tests. Other days were more normal—he’s stable and resting, you can (and to a certain extent, need to) do other things. For me, being able to work a little kept me feeling like myself. You’re still a whole person despite the situation you’re in.
"There was a lot of pressure to be everywhere for everyone every day. I had a baby, a partner who couldn’t drive with tons of appointments, and a demanding job that felt incompatible with everything else. Having this kind of caregiving role is lifelong, so at first it was hard to understand where my limits were and what 'healthy' was."
- J
J: There was a lot of pressure to be everywhere for everyone every day. I had a baby, a partner who couldn’t drive with tons of appointments, and a demanding job that felt incompatible with everything else. Having this kind of caregiving role is lifelong, so at first it was hard to understand where my limits were and what “healthy” was. Eventually I started learning how to ask for help and from whom so that way I could balance responsibilities and take time to care for myself, but it continues to be an ever-evolving process.
D: I’m so grateful for all the help I received from my company, my boss, and Cocoon. I needed to do a bunch of research, make phone calls, and I was really grateful to my partner at Cocoon for doing certain paperwork and logistics on my behalf, and walking me through everything. I’m also really glad that I could talk to my parents. I was very worried about returning to work, but my mom said my future was too bright for me to drop everything and that I’d done so much.
H: I appreciated when people let me know that they were aware of the situation, that they were there if I needed anything, then more or less treated me like before! Not like flippantly asking if I had a fun weekend (because, no, I did not), but respecting that I’m still capable of my job, that I’m still me. I spent so much of my time being a “cancer mom” that when I was at work, I wanted to be treated like a colleague.
"I appreciated when people let me know that they were aware of the situation, that they were there if I needed anything, then more or less treated me like before...respecting that I’m still capable of my job."
- H
J: When offering support, bring tangible ideas that you’re willing to offer. When someone asks “how can I help?” and I ask for something that’s not convenient for them, they might not do it and it’s disappointing and uncomfortable for everybody. So if you can come to someone and say, “hey I can babysit/pay for something/cook dinner/pick up and drop off for an appointment” even if it’s something small, taking that responsibility off someone’s shoulders is a huge help, so don’t underestimate that.
D: It was one of those things that made me realize there are a lot of good people out in the world that are willing to help and support when something bad happens. So for me it was a chance to revisit my attitude, the way I see the world, and myself. Can I be the silver lining for myself and others the way my parents, employer, and friends were for me?
H: I think I developed a different perspective on what matters in a job. I’d been through two maternity leaves by then, which were already messy and confusing enough, but there was clearly even less of a playbook for caregiver leave. For my next job after my son’s illness, I worked for someone I had worked for previously and had a strong relationship of trust with. I knew I could go to her with anything, and that she would have my back. That trust is a must, especially until companies are more prepared to handle their employees dealing with real life.
J: After I quit my job, I actually ended up getting a job at Cocoon. I can personally relate to what people go through, empathize with their experience, and make sure that goes into what we’re making. It feels like I’m allowed to show up authentically, which means acknowledging that I’m a caregiver, that I need rest, that I need balance. And it feels like Cocoon wants that to be true not only in their workplace, but in general.
The circumstances surrounding one’s becoming a caregiver are complex and full of unknowns. But what doesn’t have to be a mystery is how employers prepare for an employee’s caregiver leave, and how they support them along the way. By sharing these stories, we can begin to break the silence around addressing difficult personal situations in a workplace setting and inspire employers to set the foundation for a caregiver to safely stand upon, instead of pushing them further into a hole.
We can’t wait another 30 years for a solution that only works for some Americans. It’s time to shape the conversations and decisions that will finally give US citizens access to paid leave to afford the time and cost to take care of themselves, their families, and loved ones.
