by Racquel C. Fullman, Communications Coordinator, Women Employed
If I had to sum up my caregiving experience into one word, it would be “isolated.” And many caregivers will agree. There is a certain isolation that comes with caring for a loved one that no one talks about. The tears, the sacrifices, the hard days. It can feel like you’re going through it alone with no support or anyone to commiserate with. And as a millennial caregiver, this was especially true in my case.
Earlier this month, I had the fortunate opportunity to experience Caring Across Generations’ inaugural CareFest Conference. It was refreshing to meet caregivers from across the country, including some in my age group whose stories mirrored mine. There, I found my community and no longer feel that same isolation as before.
But although my days of caregiving for my older relatives are now behind me, I often reflect on that experience. I have an increased level of strength, character, and compassion that has since been instilled in me, and am proud of the fact that for a period, I had a hand in my loved ones’ health and wellbeing. Here’s my caregiving story.
One could say that my caregiving journey began when I was six years old. Whenever my grandfather had a seizure, I was brought in to help keep him calm and talk to him while waiting for the ambulance to arrive. At eight, I started helping my grandmother prepare her insulin needles by filling the syringes and storing them in the refrigerator for when they were ready for use. When I returned to Chicago after college, I not only resumed assisting with caring for my grandmother, but I sometimes accompanied my uncle to the hospital for his doctor’s visits.
After watching my mother in a caregiving capacity for years, I felt that caregiving was just something you did. You have a loved one in need of care, so you care for them. No questions asked, no pushback, no complaints. You just do it. Especially since I lived in the same building as my grandmother and uncle, it just made sense. But eventually, being a caregiver began to take its toll on me.
During my early 20s, I found myself living two completely different lives. There was the young professional, party girl me, who was at all the happy hours, networking events, clubs, concerts, festivals, you name it. But there was also the caregiver me, who was listening out in case someone fell, helping to administer medicine, and making frequent trips to my neighborhood pharmacy to pick up prescriptions. And more often than not, those two worlds collided.
For example, I’ve had instances where I would come in after a night of partying, ready to go to sleep, and found myself rushing downstairs to come to someone’s aid. There was one time when I came home and had just enough time to shower and change clothes because I had to accompany my uncle to the doctor. One of the worst was when I jumped out of bed before my alarm went off for work, because I heard my uncle fall, and I had to ride in the ambulance with him on the way to the hospital and advocate for him while waiting on my mother and grandmother to arrive. So many times, I contemplated moving, even relocating to another city, to live the life that I always envisioned for myself. But feelings of guilt and selfishness stopped me before I could even get started.
Following my uncle’s passing in 2012, my caregiving responsibilities for my grandmother increased, and I found myself becoming more hands-on. Even though my mother lived less than ten minutes away and bore the brunt of the responsibilities, if something urgent took place while I was home, I had to step in and act accordingly.
I stopped going out as much in case something happened. And each time I decided to stay home instead of going out, my grandmother had a medical emergency that could have been dire had I not been there. On the rare occasions that I did go out, I either had to make sure I was home by 9 p.m. or left out after so that I could give my grandmother her evening medicines. It even got to the point where I was administering my grandmother’s insulin and pricking her finger multiple times a day to test her blood sugar. And each time I saw her wince in pain at my lack of proper training, it crushed me.
At the start of the pandemic in March of 2020, when we were all forced to stay home, my caregiving responsibilities began impacting my mental health. Even though I didn’t go out as often, I was at least able to use work as an escape. But being home all day, every day, I never had a break, and I was drowning. Then it hit me that at 34 years old, I wasn’t living life, I was merely existing.
My entire adulthood had been consumed with taking care of someone else. And yes, I did things that the typical 20- and early 30-something would do, but it still wasn’t on the same level as my peers. I passed on opportunities, opted to stay in the house, gave up on my dreams of relocating, and even put off starting a family so that I could help at home. And to be clear, no one asked me to do it or made me feel like I had to, it was just something that I did.
I made the bold move to relocate in the middle of the pandemic. It was a last-ditch effort to live out a dream of mine. But I ended up cutting that dream short less than a year later and moving back to Chicago due to my overwhelming guilt.
Upon my return, things were worse than before. So much so, that my grandmother could not be home alone. My mother and I devised a plan where she would stay over two nights in a row, go home for two, then come back for two. And on the days when she wasn’t over, I was on duty. But even then, it wasn’t enough.
That plan soon proved to be unhealthy for both my mother and me over time. So instead of her spending the night throughout the week, she would come over during the day while I worked (because I was still working from home), with me taking the overnight shift. During this time, my days started with me checking my grandmother’s blood sugar first thing in the morning, administering insulin if needed, and then following up later in the evening to give her medicine before bed. In addition to listening out for my grandmother overnight in case she fell or cried out for help.
Things finally came to a head in May of last year when my mom moved my grandmother into a supportive living community. It was a difficult decision, one that still presents its fair share of challenges. But there is peace knowing that my grandmother is where she needs to be and that I no longer listen out for falls and other bumps in the night, prepare and administer insulin, or worry about medical emergencies that require me to act quickly.
Unfortunately for me, no one in my age group could relate to what I was going through. None of my friends knew what it was to have to care for a loved one and the sacrifices that came with it. Cancelling plans or cutting them short, turning down opportunities, and altering lifestyles all in the name of caregiving were foreign to my millennial group of friends―because the words “millennial” and “caregiver” didn’t necessarily go hand in hand. When one thinks of a caregiver, an early 20- or 30-something with their whole lives ahead of them doesn’t usually come to mind. As a result, I spent many days feeling like I was on an island all by myself.
Thankfully, when my caregiving journey reached its peak, I began working for Women Employed and was given the accommodations needed to care for my grandmother and still maintain my livelihood. If I needed to start late, take time off, or alter my workday, I was afforded that opportunity. Having the support of my employer enabled me to breathe a sigh of relief for many days because I didn’t have to worry about if my employment was in jeopardy. It also helped that my story, as unique as I thought it was, is one of the many causes that the organization advocates for. I’m happy to say that I work for a company who ensures that its employees have the same rights and protections that they relentlessly fight for, for others — including paid family and medical leave, paid sick time, flexible and hybrid scheduling, and more. As my grandmother says, “Charity begins at home and is spread abroad.” And Women Employed truly embodies that saying. For that, I am grateful.
November is National Family Caregiver Month, and I want to remind my fellow caregivers that their sacrifices, hard work, and dedication to their families do not go unnoticed. While taking care of loved ones oftentimes feels like a thankless job, the work that it takes to ensure the health, safety, and well-being of those entrusted to our care is important, it is needed, and it is commendable. And to my 20- and 30-somethings who have put their lives on hold to care for their families, at times it may feel like you are walking this journey on your own, but just know that there is a community of caregivers walking alongside you.