From Personal Struggle to Purpose: Why I Founded GiveCare

When my four-year-old daughter Laila whispered, "Paci’s grandma died," clutching her beloved pacifier, it quietly marked the end of an intense, six-year caregiving journey. It was a journey defined by love, sacrifice, exhaustion, and resilience—one that profoundly transformed my life and ultimately inspired the creation of GiveCare.

Navigating Uncharted Territory

In 2015, my wife and I moved from Austin back to my childhood home on Long Island, stepping into the unknown to care for my aging parents. My father, once a talented surgeon, faced the relentless progression of ALS. My mother, a pediatrician whose remarkable memory faded under Alzheimer's disease, required care with escalating urgency. Overnight, we joined millions of Americans thrust into roles of unpaid family caregiving, untrained and unsupported as we took on complex medical and emotional responsibilities.

The Hidden Realities of Daily Caregiving

Over six intense years, caregiving consumed every aspect of our lives. I filled twelve black-and-white composition notebooks with notes detailing medications, daily tasks, dietary guidelines ("All food must be purée! To feed mom!"), and my parents' vital signs—an invisible archive of labor rarely acknowledged by our healthcare system.

We constantly navigated a fractured system. Medical information was scattered. Appointments, emergencies, medications, insurance, aides—it was all on us. There were falls, infections, late-night crises. Police officers helped lift my father from the floor. Paramedics rushed in more than once. And each new emergency reminded us how alone caregivers often are.

We weren’t unique. Research from the Rosalynn Carter Institute shows that caregivers routinely face intense physical, emotional, cognitive, and financial pressures—yet remain structurally unsupported.

Emotional and Financial Costs

Watching my parents decline was heartbreaking. The slow erosion of independence and dignity took an emotional toll I still feel. Studies show that 40–70% of caregivers experience symptoms of depression. I didn’t need the data—I was living it.

Financially, the burden was crushing. Over the course of their care, we spent hundreds of thousands of dollars on home health aides alone. Managing the cost meant navigating a maze of insurance plans, social security programs, and annuities—while trying to preserve a sense of stability for my own young family.

The Personal and the Profound

Amid the exhaustion, caregiving created moments of deep connection. My daughter spent her early years playing in my parents' remodeled, wheelchair-accessible bedroom—a quiet space of intergenerational life unfolding. I still remember my father's quiet pride when he managed to brush his own teeth, or the way my mother would light up when she caught a glimmer of recognition in our voices.

These moments taught me something essential: caregiving isn’t just a set of tasks—it’s an act of love, of presence, of bearing witness.

But love is not enough when the system fails you. Caregivers need more than grit. They need structure. They need support. They need tools built for them.

Creating Change: The Birth of GiveCare

GiveCare was born from that gap—the space between overwhelming need and invisible labor. I wanted to create something that didn’t just acknowledge caregivers, but actively centered their well-being.

GiveCare is designed to support caregivers where traditional systems don’t. It helps you reflect, reset, and find small moments of care for yourself in the middle of someone else’s care journey. It surfaces personalized, meaningful resources when you need them—not just for logistics, but for the parts of caregiving no one else sees: the isolation, the doubt, the emotional strain.

There isn’t a service for how to emotionally cope when your parent no longer recognizes you. There’s no hotline for when the weight of caregiving hits you at 2 a.m. GiveCare aims to quietly fill that space—with curated guidance, emotional check-ins, and personalized discovery that adapts to who you are and how your role evolves.

Caregivers need more than tools—they need space. They need systems that work in rhythm with their lives. That’s what we’re building.

Advocacy and the Future

Caregiving didn’t just change how I live—it changed what I stand for.

As a board-certified patient advocate (BCPA) and member of the Alliance of Professional Health Advocates, I’m committed to advancing the visibility, rights, and resources of caregivers across the country. I advocate for policies that expand Medicare coverage, support caregiver tax credits and paid leave, and ensure sustainable funding for home- and community-based services.

I'm also a mentor at I AM ALS, where I support other families navigating ALS and push for research equity, patient-centered care, and stronger public health infrastructure—not just for those diagnosed, but for the loved ones who walk alongside them every day.

Caregiving is deeply personal, but the systems that shape it are collective. Advocacy is how we bridge that gap.

Caregivers are infrastructure. It’s time policy treated us like it.

Moving Forward Together

GiveCare isn’t just an app—it’s a movement toward compassion, recognition, and real-world support. My hope is that it helps caregivers feel seen, equipped, and connected—not just surviving, but resilient.

Caregiving changed my life. It broke me open. It made me more human. And through GiveCare, I’m trying to give something back to those walking the same path.

With heartfelt gratitude,
Ali Madad
Founder, GiveCare

Join our mission. Share your caregiving story or reach out for support at [email protected].