A fictional imagining of a nighttime encounter with Lewy body dementia

Where are you?

It’s dark.

I’m awake.

I’m in my bed.

The sheets are around me. The room is quiet.

Something isn’t quite right.

There’s nobody beside me.

I look toward the other side of the bed.

Empty.

I’m used to having you near me.

Where are you?

I don’t know whether I ask myself that question. Maybe there’s simply a feeling that something is missing.

I move toward the edge of the bed.

Getting out takes a little effort.

I sit up.

My feet find the floor.

I stand.

For a moment, I wait.

Then I start walking.

Down the hallway

The house is quiet.

It’s nighttime.

I know this house.

I’ve walked through it thousands of times.

There’s a doorway.

A hall.

Another room.

I’m looking for something.

Someone.

You.

I don’t necessarily know why we’re sleeping in different rooms.

Maybe I knew earlier.

Maybe you explained it.

But now you’re not beside me.

I know where to find you.

I walk toward your room.

There you are.

You’re in bed.

That’s better.

The blankets

I stand beside your bed.

There’s a comforter.

I reach for it.

I lift it.

The fabric rises.

I let it fall.

I lift it again.

There’s something I want to do.

Get under the covers.

Lie beside you.

But the blankets are in the way.

I lift them.

They fall back down.

Again.

The movement is familiar.

Something about it belongs to getting into bed.

But the next step doesn’t come.

I lift the comforter again.

I don’t necessarily understand that I’m repeating myself.

I’m doing something with the blankets.

You’re lying there.

I’m close to you now.

Some nights

You move.

You turn toward me.

You say, “Come on. You can get in.”

You scoot over.

There’s room.

I climb into bed.

It takes some maneuvering.

The mattress moves beneath me.

I get myself situated.

Or at least I find a place to lie.

You’re beside me.

That’s what I wanted.

I can feel the warmth of another person.

The comforter settles over us.

I don’t have to look for you anymore.

I close my eyes.

Maybe I fall asleep.

Maybe I wake up again.

My body moves.

A leg twitches.

I turn.

I find another position.

I may not realize that I’ve moved across the mattress.

Or that I’ve left you very little room.

I don’t know that you’re lying awkwardly, trying not to disturb me.

I don’t know that every movement I make is interrupting your sleep.

I’m just trying to get comfortable.

You’re here.

That’s good.

Other nights

It’s dark.

I’m awake again.

The bed beside me is empty.

I get up.

I walk down the hallway.

You’re in the other room.

I go to your bed.

There’s the comforter.

I lift it.

It falls.

I lift it again.

I’m trying to get in.

Or perhaps I’m simply doing what my hands seem to know how to do.

The comforter rises.

Falls.

I hear you move.

You turn toward me.

“What are you doing? I’m trying to sleep here. Go back to your room.”

Your voice is different.

Sharp.

Angry.

I stop.

You’re talking to me.

I hear you.

Go back to your room.

I know those words.

But I came here because I wanted to be near you.

And now you want me to leave.

Maybe I understand that you’re angry.

Maybe I don’t understand why.

Maybe I know I’ve done something wrong, but can’t work out what it is.

Or maybe I don’t think about right or wrong at all.

I simply hear your voice.

You’re upset.

I stand beside the bed.

A moment ago, I was reaching for the comforter.

Now I’m not.

You tell me again to go back.

I turn away.

Back down the hallway

I walk out of your room.

The house is dark.

I know the way.

I’ve walked it before.

I return to my bedroom.

There’s my bed.

The sheets are there.

I stand beside it.

I reach for the bedding.

I lift it.

It falls.

I lift it again.

I want to get into bed.

There’s something I’m supposed to do.

But it isn’t coming together.

Perhaps I manage to climb in.

Perhaps I sit for a while.

Perhaps I lie down near the edge.

I’m alone again.

Do I feel rejected?

Maybe.

Do I understand why you sent me away?

Maybe not.

Perhaps the feeling of your anger stays with me after I’ve forgotten the words.

Or perhaps my attention has already moved on.

I don’t know.

The room is quiet.

You’re somewhere else in the house.

I know you’re here.

I found you.

But tonight, I couldn’t stay.

The next night

Another night.

Another waking.

The same quiet house.

The same empty space beside me.

I get up.

I find you.

I lift the comforter.

It falls.

I lift it again.

You stir.

For a moment, I stand there.

Then you move over.

“Come on, Matt. Join me.”

I climb in.

You pull the covers around us.

I’m beside you again.

I don’t know what makes one night different from another.

I may not remember being sent away the night before.

I may not recognize that you’re exhausted.

I only know that tonight, there’s room for me.

And I’m glad to be here.

Behind the Story

This story comes from a recurring nighttime encounter between Matt and me.

As his Lewy body dementia has progressed, we’ve increasingly slept in separate beds. Matt twitches, changes positions, gets up repeatedly, and often ends up taking more than his share of the mattress. When we sleep together, I frequently find myself contorting into uncomfortable positions to accommodate him. The result is disrupted sleep, sometimes night after night.

But Matt still comes looking for me.

He walks into my bedroom and begins lifting and dropping the comforter, much as he does with the sheets when trying to get into his own bed.

I suspect he wants to climb in beside me. More fundamentally, I think he wants to be close to me.

Some nights, I welcome him. I scoot over and invite him in.

Other nights, especially when I’m exhausted, I respond angrily. I ask what he’s doing, tell him I’m trying to sleep, and send him back to his room.

I’m not always kind.

From my perspective, he’s interrupting the sleep I desperately need. And when I’m exhausted, I experience his behavior almost as though he’s placing his needs ahead of mine.

But is that what’s happening from his perspective?

Does he understand why we’re sleeping separately? Does he recognize that he’s waking me? Is he even capable of considering how his movements affect my sleep?

Or is he simply looking for the person who has shared his bed and his life for so many years?

I don’t know.

And I don’t know what he experiences when I send him away. Whether he feels rejected, confused, or simply responds to my instructions and moves on.

Those uncertainties are precisely why I wanted to write this story.

The need for closeness is real. So is the need for sleep.

Neither disappears because of Lewy body dementia.

But the disease has profoundly changed our ability to negotiate those competing needs as we once did.

I cannot expect Matt to understand our situation in the way he once would have. And I cannot simply stop needing rest.

What I hope to change is my instinctive interpretation of his behavior.

If I can see a husband looking for closeness rather than someone deliberately disregarding my needs, perhaps I can respond with greater understanding—even on nights when I must protect my sleep and ask him to return to his own bed.

That’s the challenge I’m working toward.

Not always saying yes.

Not sacrificing my own needs.

But finding a way to say no, when I must, without making the man I love feel unwelcome.

This story is part of the Through Matt’s Eyes series, a collection of fictional first-person narratives inspired by real experiences of living with Lewy body dementia.

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