By Bianca Leon, caregiver, OLHA Youth Advisory Board Member – Illinois

“What do you do? Are you in school? Are you a nurse?”

These are the questions I am asked almost every time my grandmother and I visit a doctor’s office. And my answer is always the same:

“No. I’m just a caregiver.”

People ask because I list her medications from memory, recall her diagnoses without hesitation, and speak with familiarity that sounds clinical. They’re often impressed. But I think it’s also my age. I’m 23, and often the youngest caregiver in the room.

What usually follows is the question I’ve come to dread most:

“What did you do before this?”

Answering feels like picking at a scar.

Just a year and a half ago, I was living in Washington, D.C., completing an internship and preparing for graduate school. Then I received the call that changed everything: my mother had suddenly passed away.

Within days, I returned home to Illinois, planned a funeral, sold my mother’s home, and became my grandmother’s caregiver.

Each time I retell this story, I hold back tears. There’s usually a pause afterward, followed by, “She’s lucky to have you.”

At first, those words made me feel seen and validated. But over time, they began to carry a deeper weight. They reminded me that not every family has someone who is able to step in and provide care, or the support they need to navigate it. They also reminded me that being here came at a cost.

Caregiving is not just a labor of love. It is exhaustion. It is grief layered on responsibility. It is making decisions you are not ready to make. And sometimes, it is learning the hard way just how much your voice matters.

I learned that lesson not long after my grandmother and I relocated to southern Illinois. Shortly after settling into our new home, my grandmother injured her leg in what initially seemed like a minor accident. Within minutes, my grandmother’s condition worsened, and I called 911.

While in the emergency room, I watched as her pain was dismissed, and we were sent home.

By morning, I was calling 911 again. This time, her life was at risk.

Her blood pressure had dropped dangerously low, and the injury to her leg had resulted in sepsis. The care she needed was beyond what our local hospital could provide, and we were told she would need to be transferred to a specialized hospital much farther away.

In an emergency, proximity matters. However, I quickly understood that proximity does not always equate to access.

The months that followed were a blur of hospital visits, difficult decisions, and constant uncertainty. I made choices I never imagined making, including temporarily placing my grandmother in a nursing facility for recovery.

I learned that being a caregiver means being more than present. It means being an advocate: asking questions, pushing for answers, and sometimes challenging the people entrusted with your loved one’s care.

Because if you don’t, who will?

As a Latina woman, caregiving is not just something you step into. It is something often expected of you. We are taught that family comes first, that we must be strong, selfless, and nurturing.

There is pride in caring for others beyond yourself. But there is also pressure.

For a long time, I struggled within that expectation. I felt like there was no space to acknowledge how hard this role is, to admit that you can love deeply and still feel overwhelmed.

That tension still exists. But it no longer defines me in the same way.

I stopped feeling embarrassed when I said, “I’m a caregiver.”
I stopped minimizing the role I play.
I started recognizing that caring for someone else also requires caring for myself.

Because caregiving is not just one role.

It is many.

You are a caregiver, but you are also a coordinator, a decision-maker, a translator, a protector, and an advocate.

And too often, you are all of these things without enough support.

That is why sharing this story matters.

Caregivers should not have to navigate this journey alone. We need stronger support systems, accessible healthcare, and communities that recognize the full weight of caregiving in meaningful, tangible ways.

If you are a caregiver, know this: your work is real, your voice matters, and you deserve support.

And if you are not, think about the caregivers in your life, how you can show up for them, advocate for policies that support them, and recognize the invisible labor they carry every day.

Because caregiving is not just a personal responsibility. It is a shared one.