My Caregiver Experience
One thing people don’t always talk about… The difference between knowing and living it.
As a professional, I knew how to coordinate care, navigate systems, and advocate for a loved one. But when it came to caring for my own mother, the “real” of it, hit differently.
I’ll start from…
the Beginning:
From Independence to Full-Time Care
Fun times with Mom
My mom was diagnosed with lung cancer about five years before she passed. Diagnosed, accidentally after a chest X-ray which she had because of a questionable PPD result. Also after having quit smoking for a few years. I was told her diagnosis in the women’s stall at work. Her doctor called and I needed to know. Maybe not the best time, because to get back out there and hold my s**t (sorry but the best word for it) was an out of body experience.
In the beginning, Mom was still very independent, traveling solo on public transportation from Queens to Manhattan for chemo and radiation (for those who know NYC, you know how much of a journey that is).
But then… everything changed.
From moving around freely → to needing help with transfers & self-care
From sharp memory → to no longer being our go-to when we couldn’t find things → to forgetting she had eaten just 15 minutes ago
From strength & resilience → to hospitalizations, rehab stays, and round-the-clock care
The shift took a toll on of all of us: physical, cognitive, emotional. Dramatically.
The In-Between: The Unseen Reality of Caregiving
Caregiving wasn’t just about love and responsibility, it was a daily battle with logistics, systems, and the unexpected.
Some highlights (or should I say, challenges?):
🗓 Coordinating medical appointments with my just-started-a-new-management-position schedule.
🚗 Navigating NYC traffic: Worked in Brooklyn → Picked up in Queens → Sloan Kettering doctor in Manhattan → Back home (for those who know 😖). Car to wheelchair transfers, on one-way streets while blocking traffic in NYC then unimaginable parking prices = tests of resilience.
🤕 Multiple falls: thankfully, my sons and husband were incredible in stepping up.
🦽 Motor wheelchair? Sounds nice! Not! Weeks of insurance battles, and let’s just say... our drywall took some hits.
🏥 Hospital admissions → Rehab → Long-term care: Every step was filled with tough, heartbreaking decisions; sometimes the best option was still painful.
👩🏽💻 New remote job + family rotating care = Back home with us (this time, in a new, wheelchair-friendly home with almost 24/7 care).
😱 The “Surprise!” moments: Some days, returning home to situations I could never have predicted: some funny, some frustrating, some just... Wow!
🩹 Trial and error with aides, adult day programs, and home health; you’d think getting support would make things easier, but finding the right support? A different struggle entirely.
🧘🏽♀️ Early yoga routine—non-negotiable! Needed to protect my back from Max-Assist transfers.
😫 That time I broke my toe on the hospital bed! But caregiving doesn’t stop, so I just kept it moving.
The Love, Laughter & Lessons
For all the challenges, there was so much joy.
🎶 Road trips, movie nights, weekend breakfasts, and blasting her favorite music while getting through daily routines.
🌳 Walks in the park, dinner outings, moments of laughter that remains dear in our heart today.
💙 More love than I can ever put into words.
I miss her. And I’d do it all over again. Why I Share This
Because I get it.
❖Every caregiver’s experience is different.
❖ Some choices are empowering; others feel impossible.
❖ Sometimes, despite our best efforts, *nothing* feels like the right decision.
But what I do know? We don’t have to do it alone.
That’s why DAWN exists. To provide support, resources, and a community that truly understands.
Because caregiving is heavy. But together, we can lighten the weight. 💙