My name is Sean, and I was my mom’s caregiver through the final years of her life as she navigated Alzheimer’s, diabetes, and the complicated aftermath of a long life lived on her own terms. I moved back home to Ohio in 2023 after several years of doing three-month caregiving stints. That final move wasn’t planned—my dad and siblings managed her care for a while, but everything changed when she started running down the street, getting lost, and showing signs that the disease was accelerating.
I dropped everything—put my life in storage and came home.
At first, I worked remotely from the dining room table, keeping an eye on her constantly. My dad had promised her 50 years ago that she’d never go into a nursing home. And he meant it. But love isn’t a care plan. We didn’t have a roadmap—just vows and good intentions. And as things got worse, we had to figure it out in real-time.
In the beginning, she still knew who I was. We’d talk. She’d tell me she liked something or didn’t. She still had that spark. But Alzheimer’s is relentless. We went from managing quirky behavior and memory loss to night terrors and sundowning. She’d be up all night packing and hiding things, terrified someone was coming for her stuff.
Eventually, the ER visits started. UTIs, blood clots, pneumonia—every trip more frequent than the last. She couldn’t walk. She couldn’t get in a car. I called ambulances more times than I can count. Seven, maybe ten. I started recognizing infections before the symptoms. Memorized her med list. Became the bridge between doctors in an overwhelmed system.
I learned to build relationships with healthcare workers by being kind and understanding. I recognized they were undervalued and overworked, but when I could connect with them, it made mom’s care better. Still, I had to be persistent about getting information—none of the medical professionals seemed to communicate with each other, and we were often the only ones with the complete picture.
When the hospital couldn’t keep her anymore, they’d send her to a short-term nursing facility. She hated it. “I just want to go home,” she’d say, over and over. And I’d say, “As soon as you can take six steps, Mom, you’re going home.” She’d fight the rehab, and I’d fight for her care. Over and over.
I brought her Pepsi and pretzels, not great for the diabetes, but she was dying. Let her have her favorites. We brought her own clothes, her own blanket, and a little textured dog toy she loved to hold. We made signs for the laundry—“Family Will Wash”—so her stuff wouldn’t disappear in the hospital machine. Small things matter.
The intensity of caregiving took its toll. I tried to balance remote work with 24/7 care until my body gave out. The day after one of my own surgeries, my body gave out. I got sick and couldn’t move. I was forced to stop. That’s when I realized—I can’t do this without tending to myself.
That’s when I took family medical leave from work. When that ran out I simply told my employer I would be back when I could. I had to advocate for my rights as a caregiver.
Hospice came at the end. Twice a week. I was lucky—we had a nurse my mom liked, someone she connected with. That changed everything. She let her bathe her when she wouldn’t let anyone else close.
Her final decline was sharp. She couldn’t swallow, couldn’t stay awake. Her sisters came to say goodbye. Her face was different—her eyes had gone somewhere else. I saw it before anyone else did. Not because I’m trained. But because I know her. I’m her son.
After mom passed I don’t look at life the same way. Something cracked open in me. The experience of caregiving transformed me spiritually and emotionally, connecting me more deeply to life itself.
Because you’re in that space of life and death, you’re given access to divine guidance. Angels are with you, and so are theirs. You’ll feel it and if you’ll allow it they will carry you.
There’s also going to be a lot of darkness and hurt. And you can take that with you too. Allow it to destroy you. Or you can choose to fight. Choose joy and light. Take it all in, trust yourself, process it, and grow with it.
I’m back with my dad now. He’s got his own health problems, and he’s choosing how he wants to live the rest of his life. I’ve learned not to fight that. We all get to make our choices.
And if there’s one thing I’d tell someone just starting this journey? Prepare as much as you can now—financially, emotionally, and practically. Use all available resources, especially the free ones, because end-of-life care is expensive.
Most importantly, trust yourself and find meaning in the difficult moments. In caregiving, you will lose parts of yourself, but if you’re available to it you’ll discover parts you never knew you had.
