Caregiver Stories

Meet Gabriella

When my daughter Ale was diagnosed with COPD in his late teens, it felt like it couldn’t be real. I wondered how this could possibly be happening to my daughter. COPD is rare in young people, so we had to figure out medications, treatments, and make our home safe. Suddenly, I was not just his mom but his full-time caregiver, managing oxygen tanks and nebulizers. My thoughts spiraled– “What does this mean for his future? How does the disease progress? How am I going to do this?”

Ale struggled with breathing exercises, constant coughing, and feeling tired all the time. Watching his friends go off to college while he was stuck with daily respiratory therapies was heartbreaking. He didn’t talk about it much, but I could see it affected him deeply.

I spent my days and nights at medical appointments and ER visits. I battled with wanting to give up, while knowing that I needed to be strong for Ale. But in those quiet moments, Ale and I would really talk—about our hopes, fears, and everyday things. These conversations brought us closer.

Ale’s doctor referred me to a support group for parents of young people with COPD, and that was a turning point. It was a safe space where people understood what I was going through. This community became crucial for my mental wellness, offering advice and support. “

Caring for someone with COPD is a long, hard journey. Along the way, I’ve found strength and hope I didn’t know I had. The future is uncertain, but I treasure the moments of joy and the community we’ve built.

To anyone going through something similar, you’re not alone. It’s tough, but it’s also filled with moments of beauty and connection. Take care of yourself as you care for your loved one, and don’t hesitate to reach out for support. Sharing the load makes all the difference.

Meet Jason

Becoming an older sibling to someone with a chronic muscular condition has profoundly shaped my life. When my brother was diagnosed at the age of four, I was already a teenager navigating my own challenges. The day of his diagnosis is etched in my memory. My parents were devastated, grappling with the news and what it meant for our family’s future. As a fourteen-year-old, I didn’t fully grasp the implications at first. However, as time passed and my brother’s condition progressed, it became clear that our lives were about to change in ways we couldn’t predict.

Initially, I watched as my parents took on the primary caregiving roles. They juggled appointments, therapies, and the daily challenges that came with managing my brother’s condition. Yet, as I matured, I felt compelled to do more. I saw the toll it was taking on them and recognized that I could offer support in a unique way as his older sibling.

Slowly, I began to take on more responsibility. From helping with physical therapy exercises to ensuring he had the support he needed at school, my role evolved. It was a daunting task at times, balancing my own teenage years with the demands of caregiving. There were moments of frustration and exhaustion, but they were outweighed by the sense of purpose and connection I felt with my brother.

As the years passed and I transitioned into adulthood, my role as a caregiver became more pronounced. I took over coordinating his medical appointments, researching new treatments, and advocating for his needs. I became his confidant, offering emotional support during difficult times and celebrating every small victory together.

Taking over caregiving from my parents wasn’t just a responsibility; it was a privilege. It deepened the bond between my brother and me in ways I never imagined. We shared countless moments of laughter and tears, facing challenges head-on and celebrating each milestone achieved despite the odds.