Who Am I Now? The Loss of Identity in Dementia
- Barbara Huelat
- Apr 4
- 5 min read
Who Am I Now? The Loss of Identity in Dementia Reflections from a Caregiver’s Heart
As a caregiver to my husband Joe, there were so many questions I couldn’t answer. But the one that haunted me most wasn’t mine—it was his.
Who am I now?
Joe never said those exact words out loud, but I felt them. I saw the question in his eyes on quiet afternoons when he seemed lost in a world I couldn’t reach. I heard it in the hesitation before he called my name—or forgot it. I wondered what it must feel like to not recognize the face in the mirror, or to search for a word that used to come easily.
Was he scared? Did he feel the pieces slipping away?
I often sat beside him and silently asked the universe, What does he know? What does he feel? Does he still know he’s Joe? My Joe?
Dementia doesn’t just steal memory. It chips away at identity—the sense of self that grounds us. And as a caregiver, I felt a deep ache watching the man I loved slowly unravel from the inside out. But I also learned something powerful: we can help our loved ones hold on to who they are, even when words fail, even when memories fade.
Reminders of Self
I surrounded Joe with the pieces of his life that I hoped would anchor him. His favorite photos. The scent of his cologne. The swing music we used to dance to. I’d whisper, “Joe, remember this song? You always dipped me right on the chorus.” Sometimes he’d smile. Sometimes he’d hum. And in those moments, I saw him—not the disease.
Preserving Dignity
I tried never to treat Joe like a patient. He was my husband, my partner, my love. Even when he needed help dressing or eating, I made sure to honor his preferences. Blue shirt. Black socks. No itchy tags. These details may seem small, but to someone whose identity is slipping, they are lifelines.
Listening for the Person Still Inside
One person who deeply inspires me is Samuel A. Siamon, also known as “Dementia Man.” He lives with Alzheimer’s and courageously speaks about what it feels like from the inside. He reminds us that people with dementia are not empty vessels. They are not shells. They are still here, still feeling, still needing to be seen and heard.
Samuel helped me understand something I could never quite put into words while caring for Joe: even when someone can’t express themselves clearly, they still need to be known. They still need to be themselves.
Loving Through the Fog
So I kept showing up. I kept saying “I love you.” I kept singing our songs. Even when Joe couldn’t say my name, I called his. I saw the flickers of recognition, the hand squeeze, the half-smile. In those moments, I knew he hadn’t disappeared completely. Not to me.
Dementia changed our relationship, but it didn’t erase our bond. And though Joe forgot many things, I like to believe that deep inside, he never stopped being himself—and never stopped being loved.
If you’re walking this road with someone you love, hold onto this: you can still help them feel like themselves. You can reflect their dignity back to them, even when the mirror gets cloudy.
Because no disease can erase a soul.
And when they ask, “Who am I now?”—your love, your presence, your steady voice can gently remind them:
You are still you. And I am still here.
Would you like to pair this post with a downloadable "Memory Anchors" guide for caregivers—tips and prompts to help keep identity alive?
Wonderful! Here's a "Memory Anchors for Dementia Caregivers" downloadable guide you can pair with the blog post. It’s designed as a gentle, practical companion—something caregivers can print, keep nearby, and use to spark connection and identity moments with their loved ones.
🧠 Memory Anchors: A Caregiver’s Guide to Preserving Identity in Dementia
Small actions that make a big difference.
When dementia clouds memory, identity can feel like it's slipping away. But even in the fog, we can offer moments of clarity, connection, and comfort. This guide offers simple ways to anchor your loved one to who they are—to help them feel seen, known, and loved.
❤️ 1. Say Their Name. Often.
Use your loved one’s name in conversation regularly. It’s grounding and affirming. You might say:
“Joe, you always made the best pancakes.”
“You’ve always had a beautiful smile, Mary.”
Their name is a reminder: You still matter.
🖼️ 2. Create a “Life Wall”
Set up a space with:
Favorite family photos
Awards or diplomas
Old travel souvenirs
Childhood memories
Talk about the items. Ask simple questions: “Where were you in this photo?” Or just reminisce for them.
🎶 3. Play Their Life’s Soundtrack
Music is a powerful memory anchor. Play:
Songs from their teenage years
Their wedding song
Church hymns or cultural favorites
Watch for smiles, humming, tapping feet. Even in silence, the music often stirs the soul.
👕 4. Honor Their Style
Let them choose clothes (or offer familiar favorites). The goal: help them feel like themselves, not just “dressed.”
A favorite sweater
A signature hat
Jewelry they always wore
Dignity lives in the details.
✋ 5. Use Familiar Routines
Routine is comforting and identity-affirming. Include:
Morning coffee rituals
Folding towels together
Watering plants
Brushing hair “the way they like it”
Even if they need help, the pattern matters.
📖 6. Tell Their Story Back to Them
Remind them:
“You were such a good teacher.”
“You served your country with pride.”
“You always made the best Sunday roast.”
This is not patronizing—it’s reclaiming their truth.
🧩 7. Look for What Still Brings Joy
Identity is more than memory. It’s emotion, passion, essence. Look for:
Art or coloring
Flower arranging
Holding hands
Sitting in the sun
These moments say: You are still you.
Final Thought:
You don’t need to fix the memory. Just feed the soul.
Keep showing up. Keep anchoring them in love, familiarity, and dignity. You may not stop the forgetting—but you can still help them feel remembered.
Have you or a loved one faced stigma around an Alzheimer’s or dementia diagnosis? How has it shaped your journey? I’d truly love to hear your story—please share in the comments.If this post spoke to your heart, pass it along to someone who might need it. 💜
—Barbara J. HuelatCaregiver • Healthcare Design Specialist • Speaker • AuthorChampioning compassionate care and innovative solutions for dementia.
📚 Author of Taming the Chaos of Dementia🌐 Visit My Website | 📬 Subscribe to My Newsletter📖 Like my blog? Please like & share! Love my book? I’d be grateful for your review.
For speaking inquiries, caregiver resources, or just to connect, visit barbarahuelat.com or call 703-795-1743.Let’s keep this important conversation going.
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