As a nurse, I know what dementia looks like. I see it every day.
I’ve learned to recognize the quiet shift in families — the moment they realize their loved one can no longer be left alone.
Witnessing how this heartbreaking and terrible disease unfolds and can slowly unravel a patient’s memory and identity has given me the insight and compassion to guide families through the same journey. To help them understand what’s happening, what to expect, and how to hold on to love in the face of loss.
When it starts to surface
I’ve always loved working with elderly patients. Patients living with dementia hold tightly to the memories that matter most and share glimpses of their lives with unexpected clarity — sometimes even with humor. Working with them has helped me better understand the disease, empathize with them, and understand things I otherwise may not have.
So, when Mom began forgetting names, misplacing things, and missing appointments, I knew it was the early signs of dementia. Dad was there to remind her of the memories she couldn’t recall and to help her find whatever she had misplaced. He was her primary caregiver.
While driving with Mom and Dad to her doctor’s appointment one day, we stopped at the pharmacy to pick up her prescription. Mom couldn’t remember why we were there and began asking for someone she believed had been with us — she just couldn’t recall their name. She insisted this other person had been with us the whole time, but it was just the three of us.
It felt surreal. I had cared for so many dementia patients over the years, supporting and guiding family members, but now the patient was my mom, and I was the family member in need of support. All the questions and concerns my patients’ families have were now my own.
Watching as my mom slowly faded away, unable to stop it, was the hardest thing I’d ever faced. She was my rock and friend, the person I often called to talk about anything and everything.
When everything changes
Shortly after Mom began showing signs of dementia, Dad died suddenly. With him gone, the responsibility of caring for Mom fell to our family. It quickly became a 24-hour job because she couldn’t be left alone. I knew that a major emotional shock could accelerate dementia, and for my mom, losing her husband was that turning point.
Her worsening condition and Dad’s death took a devastating toll on our family. My sister and I tried to share the caregiving, three or four days at my house and the same at my sister’s. After a few months, we both agreed it was too much, and after some searching, we found a facility to care for her. This didn’t last long. My sister has a heart of gold, and seeing her mom there broke her.
She took Mom in and became her primary caregiver. Mom was often sad, confused, and angry at times, and the constant care took a serious toll on my sister.
Words can't convey how grateful I was to my sister for her gift to our mom. She didn’t realize it then, but she was the luckier daughter. She was able to spend Mom’s last few years with her.
Carrying on
My mom has been gone for two years now. I often see families facing the same challenges mine did, and because of what I’ve lived through, I can honestly tell them there's no crueler disease than dementia. Nothing truly prepares your heart for the sadness, but I try my best to help them through it.
I encourage nurses to learn as much as they can about dementia. Many great online resources and organizations are dedicated to dementia and Alzheimer’s care. The more you know, the better you can support patients and their families. Also, simple things like patience and kindness go a long way, especially for a patient who’s scared and confused. And don’t forget to thank the caregivers. They give so much, yet their sacrifices often go unnoticed.
