She was still smiling then—making jokes with the nurses, asking if her hospital gown made her look like a “spa guest on discount day.” That was Mom. Even with wires taped to her head and machines blinking behind her, she wanted us to feel okay.
But I remember the moment I started to feel it in my gut: that something bigger was wrong.
It wasn’t just her memory slips. It wasn’t just the dizzy spells or the weird, jittery handwriting. It was the way she started pausing mid-sentence, looking at me like she knew what she wanted to say but the words had betrayed her.
We saw five specialists. Five. Every one of them had a theory—migraine disorder, stress, early menopause, sleep apnea. One even said, “Maybe she’s just overwhelmed.”
But overwhelmed doesn’t explain how she forgot how to make coffee in the machine she used every morning. Or why she started calling me by my aunt’s name.
This photo was the day before they ran the sleep study.
But something deeper than sleep was stealing her from us.
She started sleepwalking a week later. We’d find her in the hallway at 3 AM, barefoot and murmuring to herself. Sometimes she’d try to open the front door. Once, she even made it to the mailbox in her nightgown before I caught her.
I remember Dad breaking down that morning. Just sitting on the kitchen floor, holding her favorite mug, sobbing into it. He didn’t know what to do. None of us did.
They tested her for early-onset Alzheimer’s. Negative. They scanned her brain for tumors. Nothing. They ran bloodwork for infections, autoimmune conditions, even heavy metal poisoning. All clean.
But she kept getting worse.
Her handwriting, once elegant and neat, became a mess of loops and squiggles. She couldn’t hold a spoon properly. One morning, she called 911 because she said she couldn’t remember how to breathe. The paramedics said her vitals were fine. But how do you measure fear that deep?
And then came the night she didn’t recognize me at all.
I had just gotten home from work. She was sitting on the couch, staring at the wall. I said, “Hey, Mom,” and she blinked like I was a stranger.
“Do I know you?” she asked.
My heart cracked wide open.
Dad tried to laugh it off—said maybe it was just a bad day. But even he was starting to lose that quiet hope he’d been clinging to.
We got a referral to a neurologist in another city—Dr. Herrera. A friend of a friend pulled strings. She had a six-month waiting list but agreed to see us within the week.
By that point, Mom could barely walk on her own. She spoke in fragments. Her eyes always seemed confused, like she was watching a movie she didn’t understand.
Dr. Herrera was different. She didn’t smile much. But she listened. She took notes. She watched Mom for almost an hour before saying anything.
Then she asked a question no one else had.
“Has anyone looked into prion diseases?”
We didn’t even know what that meant.
She explained gently—prions are misfolded proteins that affect the brain. Rare. Lethal. And often misdiagnosed.
There was a specific one she was worried about: Creutzfeldt-Jakob Disease. CJD. Most doctors never see a case in their lifetime. But Dr. Herrera had trained under someone who did.
She ordered a spinal tap. An EEG. A very specific kind of MRI.
The results came back fast. I’ll never forget her face when she called us in.
“It’s not confirmed,” she said, “but all the signs point to sporadic CJD. I’m so sorry.”
I asked her how long we had.
“Months,” she whispered. “Sometimes only weeks.”
I couldn’t breathe. It felt like the floor had disappeared under me.
We tried to read everything about it. It didn’t help. The disease was like a ghost—rapid, unstoppable, and cruel. No treatment. No cure.
Mom deteriorated fast after that.
She stopped speaking. Stopped eating on her own. The woman who once sang to the radio while folding laundry now stared blankly at the ceiling, her mouth slightly open, as if stuck between two worlds.
But the hardest part? She was still there, sometimes.
Once, while I was cleaning her face with a warm cloth, she suddenly whispered my name. Just my name. And then she smiled. Just a tiny flicker.
I held onto that for weeks.
We brought her home. Hospice came. They were kind, gentle. But every day felt like losing a little more of her.
Dad slept beside her on a cot. He’d stroke her hair and tell her old stories. Sometimes she’d react with a twitch or a blink. We told ourselves it meant she heard us.
Her last day was quiet. Birds were singing outside the window. Dad was reading aloud from her favorite book. I was sitting on the floor by her bed, holding her hand.
She took one final, shallow breath. And then… nothing.
Just stillness.
We didn’t cry right away. We just sat there. Because part of us had already been mourning for months.
The funeral was small. Close family. A few friends. Most people didn’t know how to talk about it. “She was so young,” they kept saying. “So full of life.”
They were right. That’s what made it so cruel.
But here’s the twist.
A few months later, we got a letter from Dr. Herrera. It wasn’t just condolences. She told us that because of Mom’s case, another patient—someone across the country—had been diagnosed early. It wasn’t curable, but because they caught it faster, her family had more time. They got to prepare. They got to say goodbye properly.
That hit me like a wave.
My mom, even in her suffering, helped someone else.
And then came something even more unexpected.
A nurse who had cared for Mom during her first hospital stay reached out. She told me that Mom once stayed up with her during a night shift, just chatting quietly while everyone else slept. Mom had noticed the nurse crying earlier in the hallway. She offered her tea and asked about her life.
“She told me,” the nurse wrote, “that people forget how much kindness matters. That even if your world is falling apart, you can still help someone else pick up a piece of theirs.”
That was my mom.
And in a strange, karmic way… that’s what happened.
The nurse said that talk saved her. She’d been thinking about quitting nursing. She stayed. And last month, she saved a child’s life in the ER with a quick call no one else had noticed.
So yeah. My mom died from something rare and terrifying. But she left behind something stronger.
She left behind impact.
The coffee machine she once forgot how to use? It’s still in our kitchen. And now, every morning, I make coffee the exact way she taught me—half cream, no sugar, one strong stir.
I still talk to her. In the car. In the kitchen. Sometimes just in my head. I tell her what I’m up to. I tell her I miss her. I tell her that she mattered.
Because she did.
If you’re reading this and someone you love is slipping away—whether it’s from illness, time, or distance—don’t wait to say the things that matter. Say them now.
Hold their hand.
Laugh with them.
Tell them they’re unforgettable.
Even if they forget you for a moment.
That’s the lesson my mom taught me: Presence matters more than perfection. Show up. Even if your voice shakes. Even if you don’t have the answers.
Because in the end, it’s not about how someone leaves. It’s about what they leave behind.
Love.
Kindness.
Stories that ripple through the people they’ve touched.
So share this story if it moved you. Someone else might need it. Someone else might be searching for a sign that they’re not alone.
And maybe, just maybe, this is that sign.