“Shh… do you hear that?” my mother whispered, her finger raised to her lips. “There’s someone in the attic.”
It was a quiet autumn evening in 2019. I was washing dishes in the kitchen, half-listening to a podcast, when I heard her voice from the hallway—low, tense, and cautious. My mother stood there in the dim light, eyes fixed on the ceiling, absolutely certain that someone had moved into our attic.
“It’s probably just the wind,” I said gently, trying to sound calm while my heart started racing.
She shook her head slowly. “No… it’s not a cat. They’re footsteps. They live up there, I swear. I hear them moving things.”
That moment—standing in our hallway on an ordinary Tuesday evening—was the beginning of a journey I never saw coming. My mother had been living with Parkinson’s disease since 2013, but this was different. This was the first whisper of dementia.
And I had no idea what was about to unfold.
The Reality of Parkinson’s Disease Dementia
Before I share what happened next, let me give you context. According to research, up to 80% of people with Parkinson’s disease eventually develop some form of dementia. But nobody tells you what that actually looks like in your living room at 9 PM on a Tuesday.
My mother wasn’t confused about who I was (yet). She didn’t forget my name or where she lived. She just heard footsteps. Saw shadows. Believed, with absolute conviction, that strangers were living in our attic.
The doctors call them hallucinations—visual and auditory perceptions of things that aren’t actually there. But that clinical term doesn’t capture what it’s like to watch your parent’s reality slowly diverge from your own.
How It Started: The Whispers From the Attic
The first mention was so casual I almost missed it.
“There’s someone up there,” she’d say while we sat together in the living room. “I hear them walking around at night.”
My response? “Mom, there’s no one there. It’s just the house settling. Maybe a cat got in.”
She’d nod. Accept my explanation. Move on.
But the whispers didn’t stop.
Over the next few weeks, the comments became more frequent:
- “They moved something again last night. I heard it dragging.”
- “They’re near the fence. I saw them yesterday.”
- “I think they’re building something up there.”
What I Did Wrong (And What I Wish I’d Known)
Here’s what I didn’t understand then: She wasn’t asking me if the sounds were real. She was asking me to believe her fear was real.
I kept trying to convince her with logic:
- “Look, the attic is empty.”
- “There are no footprints outside.”
- “It’s just the wind.”
But dementia doesn’t respond to logic. Her brain was misfiring, creating sounds and images that felt as real to her as the chair I was sitting in. My reassurances did nothing because I was trying to fix a problem that didn’t exist in my reality—only in hers.
What I should have done: Acknowledged her fear. “That must be scary to hear. You’re safe here with me. Let me check to make sure everything’s okay.”
When Sounds Became People: The Progression
Within a few months, the hallucinations evolved.
It wasn’t just sounds anymore. Now she saw things.
The Little Builders on the Curtains
One afternoon, she pointed at our floral curtains. “Look,” she whispered. “They’re building something.”
I followed her gaze. Saw nothing but fabric.
“The little people,” she explained. “Over there, near that blue flower. They’re putting up tiny walls.”
She watched the curtain patterns like they were alive—tiny construction workers carrying stones, climbing hills, building invisible structures in the folds and shadows of the fabric.
The fascinating—and heartbreaking—part? She wasn’t distressed by these little builders. She was captivated. Curious. She’d describe their activities with childlike wonder:
- “They’re carrying little stones. So hardworking.”
- “See how they climb that hill? It’s very steep for them.”
Sometimes I could gently redirect her: “That’s just the shadow, Mom. It looks like a wall, but it’s just where the light doesn’t reach.”
She’d accept this… temporarily. But the little builders kept returning, and eventually, they started to move.
The Turning Point: When Fear Replaced Wonder
The real shift came when the hallucinations became animated—and frightening.
“They’re running!” she’d exclaim, pointing at the swaying curtains. “They’re trying to escape! Why are they moving so fast?”
The conviction in her eyes was harder to dispel now. Logic didn’t work. Visual proof didn’t work.
And then, exhausted after the fifth repetition of “Mom, there’s nothing there,” I snapped:
“THERE’S NOTHING THERE! Look! THERE’S NOTHING HERE!”
The sharpness of my tone startled her. Her hand froze mid-air. And I immediately felt like the worst son in the world.
The Lesson I Learned Too Late
That outburst taught me something crucial: My frustration was about my helplessness, not her behavior.
She wasn’t being difficult. She wasn’t choosing to see these things. Her brain—ravaged by Parkinson’s and the onset of dementia—was creating a reality I couldn’t access or control.
Getting angry didn’t make the hallucinations stop. It just made her feel more alone in her fear.
What Parkinson’s Dementia Hallucinations Actually Look Like
Based on my experience and conversations with her neurologist, here’s what these hallucinations typically involve:
Visual Hallucinations (Most Common)
- Seeing people or animals that aren’t there (often in peripheral vision)
- Patterns appearing to move (on curtains, blankets, walls)
- Familiar objects transforming (a coat becomes a person, shadows become figures)
- Small figures or “little people” (surprisingly common in Parkinson’s dementia)
Auditory Hallucinations
- Hearing footsteps, knocking, or voices
- Music or songs that aren’t playing
- Muffled conversations from empty rooms
The Progression Pattern
- Stage 1: Occasional mentions, easily dismissed
- Stage 2: More frequent, accompanied by doubt (“Am I imagining this?”)
- Stage 3: Absolute conviction, resistance to reassurance
- Stage 4: Integration into daily life (the hallucinations become “residents”)
What Causes These Hallucinations?
The neurologist explained that in Parkinson’s disease dementia, hallucinations result from:
- Lewy body deposits in the brain affecting visual processing
- Medication side effects (especially dopamine agonists)
- Disease progression affecting cognition and perception
- Poor lighting or visual impairment exacerbating misperceptions
It’s not “madness.” It’s a neurological symptom as real as the tremor in her hands.
How I Learned to Respond (Eventually)
After months of trial and error, here’s what actually helped:
✅ DO:
- Validate the emotion: “That sounds scary. I can see you’re worried.”
- Offer reassurance: “You’re safe. I’m here with you.”
- Gentle redirection: “Let’s go to the kitchen. I made tea.”
- Check the environment: Sometimes poor lighting or shadows really did make things look strange
- Track patterns: Note when hallucinations were worse (evening, after medication, when tired)
❌ DON’T:
- Argue about reality: “No, that’s not there!” only increases agitation
- Dismiss their fear: “It’s nothing” feels invalidating
- Get angry: They can’t control this any more than they can control the tremor
- Over-explain: Long logical arguments don’t help
The Medical Response: What Happened Next
After that first doctor’s visit where I described the escalating hallucinations, we received the diagnosis that changed everything:
Stage 4 Parkinson’s with dementia.
The neurologist adjusted her medications, adding pills meant to help manage the symptoms. What happened next was worse than the hallucinations themselves—she became manic, racing around the house, chasing phantom intruders with a strength I hadn’t seen in months.
(I’ll share that story in a future post, but the lesson was clear: medication management in Parkinson’s dementia is incredibly complex and requires careful monitoring.)
For Other Caregivers: You’re Not Alone
If your parent is experiencing dementia hallucinations, here’s what I wish someone had told me:
1. This is a symptom, not a choice
They’re not “losing it” or “being difficult.” This is their brain misfiring.
2. Your frustration is valid
Caregiving is exhausting. You’ll have moments where you snap. That’s human. What matters is that you come back with compassion.
3. The hallucinations may evolve
What starts as sounds might become sights. What starts as harmless might become frightening. Stay in touch with their medical team.
4. Safety is the priority
While my mother’s “little builders” were harmless, later hallucinations caused real distress. If hallucinations lead to dangerous behaviors (trying to leave the house, aggression, severe fear), contact the doctor immediately.
5. You can’t fix this
You can’t make the hallucinations stop. But you can make your parent feel less alone in them.
The Journey Continues
That first whisper—”There’s someone in the attic”—was just the beginning.
Over the following months and years, those attic residents would be joined by:
- An invisible family who “stole” her clothes
- A phantom baby she cared for daily
- Entire villages moving into our living room
- Russian soldiers hiding behind walls
- Magical trees growing impossible fruit
Each hallucination brought its own challenges. Some were peaceful. Others were terrifying. All of them were absolutely real to her.
This is our story. This is what Parkinson’s dementia looks like when it moves into your home, uninvited but undeniable.
Where We Are Now
My mother is still here. Still fighting. Still living in a world that’s partly ours and partly hers alone.
The hallucinations haven’t stopped. But I’ve learned to meet her in her reality, rather than forcing her into mine. Some days are harder than others. Some days I still lose my patience. But I’m learning.
This journey—from that first whisper in the hallway to today—is documented in my book, Whispers From the Attic. It’s the story of what happens when dementia hallucinations become part of your daily life, and how love persists even when reality fractures.
If you’re walking this path too, I see you. Your exhaustion is valid. Your grief is real. And you’re not alone.
Resources for Parkinson’s Dementia Hallucinations
- Parkinson’s Foundation Helpline: 1-800-4PD-INFO
- Lewy Body Dementia Association: Information on hallucinations in Parkinson’s
- Local Support Groups: Connect with other caregivers who understand
Have you experienced dementia hallucinations with a loved one? Share your story in the comments below. Let’s support each other through this.
Want to read the complete story? Get Whispers From the Attic on Amazon
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Cristian is a full-time caregiver for his mother who has Stage 4 Parkinson’s disease with dementia. He shares their story at HopesForMom.com to help other families feel less alone.
