Matt and I recently visited a memory care community I am considering as a possible future home for him. We met with staff and toured the facility together. It seemed like a fairly ordinary visit from my perspective. But what was it like for Matt? The purpose of this fictional narrative is to create an immersive moment to explore what he may have experienced.

This story is part of the Through Matt’s Eyes series—fictional first-person narratives inspired by real moments in Matt’s life with Lewy body dementia. The events are real; his imagined inner experience is an exploration, not a claim of certainty.

We’re going somewhere

I’m sitting in the car.

You’re driving.

Trees and houses pass outside the window. A car pulls alongside us, then disappears.

We’re going somewhere.

I might have known where when we left the house. Maybe you told me. It doesn’t seem important now.

I watch the road.

You’re beside me. We’re going somewhere together.

The car slows and turns into a parking lot.

There’s a building ahead. It has windows, a doorway, plants around the entrance.

You stop the car and get out.

I get out too.

You walk toward the entrance. You grab my hand, I walk with you.

Someone opens the door.

We’re inside.

There are people here. Chairs, tables, pictures on the walls.

I see something that looks delicious, I pick it up, its a lemon bar. Yummy

I want another one, you help me

A nice lady says I can have as many as I want, I can have water too

You pour me a cup of water

Another nice lady you’ve met before comes out and says hi to me, she knows my name.

She says we are going on a walk, you turn in the direction of a door, following her, I follow you.

The meeting

We go into an office with a conference table.

We sit down together.

The nice lady offers me something more to drink, you ask me if I want a Coca Cola, I say yes

She brings me a Coca Cola, brings over a basket of snacks, says I can have whatever I want

I grab some Cheetos, focus on opening the bag

The woman is talking to you. You answer her.

A man who has joined us looks at me and introduces himself

He then says something.

I look back at him.

He’s asking me a question.

I know what I’m supposed to do when someone asks a question.

Answer.

Sometimes that’s easy.

Sometimes I know there’s an answer somewhere, but I can’t quite get to it.

I start to say something.

The words don’t come out the way I expect.

I know what I mean. Or I think I do.

The man waits.

You say something.

That’s better.

The conversation continues.

There are papers on the table. Someone has a pen.

I look at the pen.

The woman is talking again.

I’m not sure what she’s talking about now.

I hear my name.

I look up.

Everyone seems comfortable. They know what we’re doing here.

I don’t have to figure it out.

I sit and listen.

It’s a meeting.

I’ve been to lots of meetings.

I know how to sit at a table and talk to people.

Walking around

We’re getting up now.

The man is going to show us something.

He walks ahead. You walk beside me.

We’re in a hallway.

There are doors on both sides. Pictures on the walls.

The man talks as we walk.

I look at the pictures.

I keep walking but you want me to see something I just passed, so I turn around

You show me a room where music is playing, it has windows, looks outside to an open area where a few other people are

We continue on our walk, we pass another room.

Someone is sitting in a chair near a doorway.

There are people inside.

Some are talking. Others are sitting quietly.

This is some kind of place where people live.

Or perhaps they’re visiting, like we are.

The man is telling us things about the building.

I hear his voice, but I’m looking at the people.

Someone looks toward me.

I look back.

We keep walking.

There’s something familiar about this place.

I’ve been in places like this before.

I used to visit Dad.

Every day, for a long time.

He lived somewhere with hallways and rooms and people sitting together.

I would go see him.

Maybe I can picture him sitting in his chair.

Maybe I can’t quite bring his face into focus in my mind.

But I know this kind of place.

We turn another corner.

You’re beside me.

The man is still talking.

You’re going somewhere else

You say you need to go to the bathroom.

You’ll catch up.

I hear you.

You turn away.

The man continues walking, and I follow him.

That’s all right.

He’s showing me around.

There’s another room ahead.

He talks.

I look inside.

There’s a table. Chairs.

We’re looking at places where people eat.

I know what a dining room is.

But there’s something about this one.

People sitting together. The quiet. The way everything is arranged.

I’ve seen this before.

Dad.

I’ve been somewhere like this

Hallways. People sitting together.

Visiting Dad.

I know this place

But it’s not the same place

I would visit him and then go home.

I could always go home.

The man is talking.

We move on.

The courtyard

We’re outside now.

There’s a walkway and some plants.

The building is all around us.

Windows. Doors. More windows.

It’s a garden, but not like the garden at home.

There’s nowhere in particular to go.

We walk along the path.

The man points to something.

I look.

He says something about the building.

I hear him, but I’m thinking about something else.

Or maybe I’m not exactly thinking.

There’s just a feeling.

Something about this place.

It’s familiar, but not in a good way.

I remember being afraid once.

Very afraid.

Something terrible was going to happen.

People were going to come and take me away.

I was going to be put somewhere.

I couldn’t stop it.

Was that real?

It felt real.

I remember the feeling.

We’re walking through a place where people stay.

People who don’t go home at the end of the day.

I don’t like that.

I look around.

Where are we going?

The man is still talking.

I follow him.

A room

We look into another room.

There’s a bed.

Furniture. A window.

It’s a room where someone could stay.

Maybe someone lives here.

Maybe it’s empty.

The man explains something.

I don’t know why we’re looking at this room.

There have been so many rooms.

The rooms are nice enough.

The man is nice enough.

But I don’t like being here.

Something is bothering me.

I don’t know exactly what it is.

I can feel it.

I don’t want to stay.

I want to go.

But we’re still walking.

I follow the man.

He knows where we’re going.

I don’t.

There you are

Then I see you.

You’ve come back.

You’re walking toward us.

There you are.

I reach out and gently take your arm.

“Get me out of here. It’s bringing up bad memories.”

I say it quietly.

Just to you.

I don’t need to tell the man.

I don’t need to explain it to everyone.

You know me.

You understand what I’m saying.

I want to leave this place.

I don’t want to think about those things.

Whatever they are.

Whatever happened before.

I just want to go.

You’re here now.

leaving

We’re walking again.

This time you’re beside me.

We’re almost finished.

The man says something.

We say goodbye.

I know how to do that.

Shake hands, perhaps. Smile. Say thank you.

The familiar things.

We walk out of the building.

There’s the parking lot.

The car.

I get in.

You get in beside me.

We’re leaving.

The building stays behind.

I look out the window.

Trees. Cars. Houses.

I don’t know whether I’ll ever come back here.

I’m not thinking about that now.

We’re going somewhere else.

Lunch

We stop at the brewery you promised to take me

There are people here too.

Tables. Chairs.

You want me to choose the beer I want

It’s so confusing, I don’t know what to do

You order for me

This place feels different.

People are looking at menus here at the bar, the bartender is pulling drafts

We’re here to eat.

You say we have to go take a walk to get something to eat

We walk there, you ask if I want this or that

Its hard for me to make a decision, so you order for me

We walk back to the bar, you order me a beer

I know how this works.

We find a table.

I sit down, I have my beer

It’s quiet here, not too many people around

There are some men banging things into the ground, I don’t like that noise, I want him to stop

A buzzer you have goes off, you say you’ll be right back

I’m ok, I will sit here with my beer

You come back with lunch for me, chicken wings and fries

We’re having lunch.

The building we visited is somewhere behind us.

Maybe I remember it.

Maybe I remember that I didn’t like it.

Maybe the feeling has already gone away.

I don’t have to explain anything.

I don’t have to follow that man anymore.

I’m sitting here with you.

We are eating, I have a beer

And for now, that’s enough.

Behind the Story

This story was inspired by an actual visit Matt made to a memory care community we are considering.

During the tour, I stepped away for approximately five minutes while Matt continued with the assessing nurse. When I caught up with them, Matt gently took my arm and quietly said, “Get me out of here. It’s bringing up bad memories.”

His words were remarkably clear at a stage when formulating coherent sentences was difficult for him–as we had seen, just minutes before during the meeting.

Matt had visited his father daily during the approximately five years his father lived in memory care. Earlier in his own Lewy body dementia, Matt had also experienced terrifying delusions about being taken away and institutionalized.

Was he remembering his father? Reliving an old fear? Something else entirely?

We don’t know. But imagining those possibilities helps me consider what that afternoon might have felt like from his perspective.

Even though I was there, reading, re-reading, and re-reading this I can already tell is building my understanding muscles, just like doing repetitive weight lifting builds body muscles.

For more about the purpose and approach behind these fictional narratives, read Introducing Through Matt’s Eyes.

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