My mom was my everything. Her name was Helen. She stood just 5'1" but was a force of nature—a spunky, tell-it-like-it-is, kind-hearted, funny, always-on-the-go Italian mother and grandmother. She was strong, independent, and full of life. Family was everything to her.
I started noticing changes in April 2019. Something wasn’t right. We saw her primary doctor on July 15. His response? “It’s just part of getting older.” But I knew my mother. I saw her every day. This wasn’t aging. This was something more.
In the three months we waited for a neurologist appointment, her decline was rapid. One moment stands out: she came to our house at 9 PM, convinced it was morning and time to get the kids off to school. She used to come over every morning at 5:30 AM to help with them—cooking breakfast, making beds, even making mine. That was her love language: service, care, presence. But now, she couldn’t tell night from day.
She started having mood swings—sudden, uncharacteristic anger. She tried to hide her confusion from me, even asking the kids not to tell me when she made mistakes. On July 29, just two weeks after her first doctor visit, I took her back. Again, I was told it was just aging. I was scared, angry, and desperate. I didn’t know what else to do, so I chose love. I comforted her the best I could, waiting for answers.
On November 4, 2019, we finally saw the neurologist. After a series of tests, she had an MRI on November 15. Three days later, we sat in his office and heard the words Creutzfeldt-Jakob Disease (CJD) for the first time. It didn’t sound real. Terminal. No cure. Six months at most. I remember the breath leaving my body. My mom, confused, got up to use the bathroom while the doctor explained everything. I think she knew—she wanted to give us a moment to absorb it. That was her. Always thinking of us.
And just like that, our world changed.
The next day, we took her to Panera—her choice. My sister and I sat in silence while she happily enjoyed her meal. When she asked why I looked sad, I told her I was just tired.
I took a leave of absence from work the next day. I became her full-time caregiver. I watched, day by day, as the woman who raised me disappeared. On December 5, I found her barefoot, wandering outside at 7 AM. Disoriented. Frightened. It was freezing.
Two days later, we made the agonizing decision to move her into a nursing home. I didn’t want my children—13, 17, and 18—to see their grandma like that. From 8 AM to 8 PM, I was by her side. My husband became a single parent during that time, and I’m forever grateful for his strength and support.
At the nursing home, no one understood CJD. I educated the staff using resources from the CJD Foundation—the only place that truly understood what we were going through. I clung to that support.
Each day was different. Some days she saw foxes in her room. Other days, she believed her father (gone for years) was visiting. Some days she was angry and combative. I cried when she lashed out, only for her to hug me moments later and ask who upset me. “No one, Mom. I’m okay.”
By mid-December, she could no longer speak. She became sensitive to sound, light, and touch. I sang to her, held her hand, wheeled her through the hallways with her head resting on my wrist. I talked to her as if we were having lunch, pretending we were somewhere else. Anywhere but here.
On December 26, we called in hospice. She could no longer walk, speak, or swallow. I still showed up every day. I told her stories about the kids. I told her she was safe. I wanted to shield her from the truth, just as she had always shielded me.
On January 5, 2020, she took her last breath. My brother, my sister, my husband, and two of her grandchildren were there. When she left this world, I felt like I left with her. She had become my entire world, and then one day, she was gone.
47 days. That’s all we had from diagnosis to goodbye. Her apartment still had food in the fridge, bills on the counter, her car with a full tank of gas—like she was just out running errands. CJD doesn’t give you time to say goodbye. By the time there’s a diagnosis, the person you knew is already slipping away.
For weeks after, I went to her apartment. Sat at the nursing home. Just… waited. I knew she wouldn’t walk through the door. But I couldn’t accept that she wouldn’t.
The pain hasn’t gone away. It just changed. The hole in my heart is still there. I’ve learned to live around it. I know she’s with us—watching over our family—but I miss her physical presence every day.
The CJD Foundation was my anchor in the storm. They offered resources, connection, and compassion when we had nowhere else to turn. I stride for them. I stride for my mom. And I stride so that one day, no other family will have to endure the horror of this disease without answers, without support, without hope.
This is my story.
This is why I stride.
