How Caregiving Changed Me

My Dad's Diagnosis

My life, once dominated by the typical concerns of a young adult—career, relationships, and personal growth—changed in an instant when my father was diagnosed with glioblastoma multiforme (GBM), the most aggressive form of brain cancer. On January 19, 2015, what began as a simple family day quickly spiraled into an emergency room visit when my dad, a physician, suspected he had had a stroke. A scan revealed bleeding into a tumor in his brain, leading to an unexpected diagnosis. Within days, he underwent surgery to remove the tumor, and the results confirmed the worst possible diagnosis: GBM.

This diagnosis fundamentally altered the course of my life. As his daughter, I transitioned from a typical young adult navigating life’s challenges to a primary caregiver. For 11 and a half months, until his passing on December 20, 2015, my world revolved around him, his care, and supporting him in his final months.

Having some knowledge about GBM from a friend’s family’s experience, I understood the grim prognosis and immediately focused on providing my dad with the best possible care and support. I adjusted my remote job to stay close to him and tried to balance work with the demands of caregiving. My life became a constant cycle of doctor’s appointments, trips to the pharmacy, and ensuring my dad’s safety as his cognitive and physical condition rapidly deteriorated. The situation was exhausting, and I felt overwhelmed but determined to support him through every moment.

As I managed a maze of healthcare providers—from general practitioners to oncologists and other specialists—I became frustrated with the lack of coordination regarding his care. Each doctor seemed to work in isolation, so I advocated for better communication between them, with my dad’s primary care physician acting as the central coordinator.

Eventually, my dad’s condition worsened to the point where he needed constant care, and we made the heart-wrenching decision to move him to a skilled nursing facility. It was a difficult transition and seeing him in a facility surrounded by older individuals who had lived longer, fuller lives made it even harder. Despite this, we knew it was the best option for his well-being.

In 2015, my dad entered hospice care on his birthday, November 27, and passed away peacefully 3 days after my own birthday, which is on December 17. Although I had anticipated his passing, it did little to ease the emotional pain and the massive void it left in our family and in my heart.

Lessons Learned

Reflecting on my time as a caregiver, I gained insights that have shaped my life since then. The role of a caregiver was something I never expected to assume. At the time, caregiving felt overwhelming and thankless, but in retrospect, it gave me invaluable time with my dad, time that I will always treasure.

My background in public health proved helpful as I navigated the healthcare system, especially given my dad’s own medical knowledge as a physician. I was able to advocate for him, and it became clear how critical it is to have advocates and support for patients with complex diagnoses.

One of the most important lessons I learned was about grief. Everyone processes it differently, and my mom, brother, and I all dealt with my dad’s death in our own ways. At first, I was critical of my mom’s grief, but I soon realized there is no “right” way to mourn. Grief is a deeply personal experience.

I also found solace in the idea of the circle of life—when someone dies, another life is brought into the world, helping me cope with the sadness. My dad’s death and my birthday coincided, which made it easier to frame his passing as part of a larger cycle, something not in vain.

Advocacy

As a caregiver, I learned how crucial it is to advocate for your loved one’s care. I had to push for transparency, challenge decisions, and speak up when the care provided wasn’t adequate. This experience showed me that no one should navigate the healthcare system alone.

Self-Care

Self-care became another vital lesson. During my dad’s illness, I neglected my own mental, emotional, and physical health. I had no energy to socialize or take care of myself, focusing instead on being constantly available to my dad. In hindsight, I wish I had allowed myself to take breaks—whether through exercise, connecting with friends, or engaging in creative activities. Self-care is not selfish; it’s essential for caregivers to be able to continue their role effectively.

Isolation

It is common knowledge that cancer patients feel isolated during treatment both literally, due to being immunocompromised, and figuratively, as they feel left behind while everyone around them continues to live a normal life. I realized that caregiving can be isolating, too. It’s easy to feel alone when you’re immersed in someone else’s needs, but I came to appreciate the importance of support systems. There are countless resources available for caregivers, from nonprofit organizations to support groups, and seeking help is crucial.

Cherishing Time and Memories

One of the most poignant lessons was recognizing the importance of quality time with loved ones. While I spent much of my dad’s final months just being present with him, I wish I had pushed him to share more stories. Memories are often lost when we don’t actively capture them, whether through conversation or documentation. I regret not taking more photos or videos, but I do have a few voicemails from my dad that I cherish knowing they’re available should I want to hear his voice.

Time is precious, especially in the face of terminal illness. I learned to savor the moments I had, understanding that the time we have with our loved ones is finite.

What Has Changed?

The most significant change in my life since my dad’s passing is perspective. I no longer sweat the small stuff or allow things to bother me as they once did. Life is too short, and I’ve learned to prioritize experiences and relationships that bring joy, rather than fulfilling obligations out of a sense of duty.

My career path also shifted. While my dad fought for his life, I was working in a job I no longer felt passionate about. The experience of navigating my dad’s illness and the lack of psychosocial support for families opened my eyes to a new career path. About a year and a half after his passing, I became an adolescent and young adult patient navigator. In this role, I combine my public health background with my personal experience as a caregiver to support others facing cancer diagnoses.

I now know that my true calling is helping patients and families, especially in the oncology space. The gaps in care that I witnessed during my dad’s illness motivated me to make a difference. My career is fueled by passion, and I feel my dad would be proud of the work I do now.

Honoring Loved Ones

One of the most meaningful ways to honor someone who has passed is by finding small, personal rituals that celebrate their life. For me, this means enjoying my dad’s favorite drinks on key dates—his birthday, the anniversary of his passing, and Father’s Day. Or feeling his presence when the sky is a beautiful “sky blue pink.” It’s a small gesture or thought, but it helps me remember and celebrate his life instead of solely mourning his death.

Ultimate Lesson

The most profound takeaway from my experience as a caregiver is the importance of helping others. My passion for supporting people, especially those with cancer, has only grown stronger since my dad’s passing. I strive to be the person I wish we had during our journey—a compassionate advocate who could make a difficult time a little easier. My dad’s legacy lives on in my work, and every day I find new ways to honor him by making a positive impact on the lives of others, as he did in his career in the biotech/pharmaceutical industry, developing effective life-saving medications (which I occasionally see prescribed for patients).

Reflecting on the past, I see how far I’ve come. My family and I have healed, found our footing again, and shifted from a life dominated by illness to one focused on living and joy. And as I continue to work in the healthcare field, I know that I am making a difference in ways my dad would have been proud of.