The first novelette in the Through Matt’s Eyes (TME) series

Getting into bed. Something most of us do every night without giving it a second thought.

For Matt, this familiar routine has become surprisingly complicated. He sometimes stands beside the bed, repeatedly lifting and dropping the sheets, seemingly unable to take the next step. Even once he’s lying down, moving toward the middle of the mattress can be a considerable challenge.

What might this ordinary bedtime ritual feel like from his perspective? How does he feel when I interact with him the way I have been inclined to do?

In this first TME story, we step into Matt’s world for a few minutes, imagining how he might experience the familiar, the confusing, and ultimately, the comforting moments of getting ready for sleep.

Honestly, we all step into also how he feels about how I interact with him…..and from that I hope to learn how to be better, more loving, more supportive….

This is a fictional interpretation inspired by real experiences. It is not a claim to know exactly what Matt thinks or feels. And yes, it is AI supported in its creation

TME: Getting into bed

I walk into the bedroom

I know this room.

It’s familiar. The bed is familiar. This is where I sleep.

I’m tired. The bed looks comfortable.

I walk over to it.

There are sheets and blankets on top. Something about them needs attention.

I reach for the sheets.

I lift them up and let them fall.

I do it again.

The fabric moves through the air, settles, and changes shape.

I lift it again.

There’s something I’m trying to accomplish. Maybe I’m trying to prepare the bed. Maybe I’m trying to find a way underneath the covers. Perhaps I simply know that handling the bedding is part of going to sleep.

But the next step doesn’t come.

I don’t necessarily recognize that I’m stuck.

I lift the sheet again.

It’s an action I can do. It feels connected to what I’m supposed to be doing.

I’m standing beside my bed, working with the sheets.

There may not be a conscious question in my mind about why I haven’t gotten in yet.

You come into the room

I hear someone enter.

It’s you.

I know you. Your presence is familiar.

You say, “Matt, let go of the sheets.”

I’m holding something.

You’re speaking to me.

For a moment, I may need to shift my attention away from what my hands are doing and toward your words.

Let go, you say.

I release the fabric.

Or perhaps I need you to repeat yourself because my attention keeps returning to the sheets.

You begin rearranging things.

You straighten the bedding, pull the covers down, and make an opening.

I’m watching.

Perhaps I understand that you’re helping me get into bed. Perhaps I simply recognize that you know what you’re doing.

The bed looks different now.

There’s a space where the covers used to be.

You say, “Okay, crawl in.”

I understand enough.

Bed. Get in.

I turn toward the mattress.

I try to get into bed

I need to move my body from standing beside the bed to lying on it.

That sounds simple.

But there are several things my brain must coordinate.

Where do my hands go?

Should I sit first?

Which knee comes up?

How far onto the mattress do I need to move?

My body doesn’t always respond as quickly or smoothly as I expect.

I find a way onto the bed.

One knee, perhaps. Then the other leg.

The mattress gives way beneath me.

It’s soft. Very soft.

I lower myself onto it.

I’m in bed.

I’ve accomplished what I was trying to do.

I may feel a small sense of completion.

I’m ready to be comfortable.

You want me to move toward the middle

You say, “Matt, move over toward the middle.”

I’m already lying down.

I hear your voice.

There’s something else you want me to do.

Middle.

I may look toward the center of the bed. I may understand that you want me somewhere other than where I am.

But the connection between that destination and the movements needed to reach it isn’t clear.

I push against the mattress.

My elbow sinks into the bedding.

My shoulder moves, but my hips don’t follow.

I try pushing with my foot.

My body shifts a little, perhaps in the wrong direction.

The mattress seems to move around me rather than letting me move across it.

You give me another instruction.

“Push with your feet.”

I hear the words.

Feet. Push.

But I must hold that instruction in mind while deciding which muscles to use, how to brace myself, and which direction to move.

The instruction may fade before I can put it together.

Maybe I try something that doesn’t work.

Maybe I stop.

You speak again.

I know you’re trying to help.

But now there are more words, and I’m still lying in the same place.

I may begin to feel frustrated.

Or I might simply lose interest in the task.

I’m in bed. Why do I need to keep doing something?

I stop trying.

Not necessarily because I’ve decided to refuse.

The connection between what you’re asking and what I need to do has become too difficult.

You begin covering me up

You stop giving instructions.

You pull the covers over me.

I feel the sheet moving across my legs.

Then the weight of the blanket.

The fabric settles over my body.

It’s warm.

You’re adjusting things around me.

You pull the covers up and straighten them. Perhaps you tuck the blanket around my shoulders.

I don’t have to figure out what to do.

I can simply lie here.

Your hands make small adjustments.

I feel the bedding being smoothed around me.

Maybe I watch your face.

Maybe I close my eyes.

The complicated task is over.

What remains is familiar sensation: the soft bed, the weight of the blankets, your movements nearby.

Even if I’ve had difficulty understanding your words, I may still understand the quality of your attention.

You’re taking care of me.

Or perhaps I don’t consciously formulate that thought at all.

I simply feel comfortable and safe.

You kiss me good night

You lean toward me.

Your face comes close.

This is familiar.

You kiss me.

I recognize something about this moment that doesn’t require instructions.

Maybe I look at you.

Maybe I smile.

Maybe I’m already becoming sleepy.

You say, “Good night, Matt.”

I may answer.

Or perhaps I don’t.

It doesn’t necessarily mean I haven’t experienced the moment.

Your voice, your touch, your smell, and the familiarity of the ritual may all register even if I can’t organize a response.

For a little while, nothing is being asked of me.

I don’t need to make a decision.

I don’t need to find an object, follow a sequence, or move my body in a particular way.

I can just be here.

You turn out the lights

The room goes dark.

I hear you moving away.

Perhaps I know you’re leaving the room.

Perhaps my attention has already shifted to the sensation of the blanket or the softness of the mattress.

I’m lying near the edge of the bed.

You would prefer that I be closer to the middle.

But that unfinished task may no longer exist in my awareness.

I’m in my bed.

I’m warm.

The room is quiet.

Maybe I fall asleep.

Maybe I lie awake, looking into the darkness, experiencing things I would have difficulty describing.

But for now, the demands of the world have stopped.

And perhaps that’s a relief.

Behind the Story

This story grew out of something I’ve watched Matt do many times.

He walks into our bedroom and begins handling the bedding, repeatedly lifting and dropping the sheets. I suspect he wants to get into bed but can no longer work out the sequence of actions needed to do so. Or perhaps the sheets themselves simply invite him to keep repeating the same movement.

When I come in, I ask him to release the sheets so I can straighten the bedding, and turn down the covers. With some direction, he gets into bed. Often he ends up on all fours, on the bed, not sure what to do next. Or he lies in come configuration which doesn’t look ideal to me. But then we face another challenge: getting him situated in the middle of our very soft mattress.

Even when he seems to understand what I’m asking, he struggles to translate my words into the movements needed to reposition himself. Sometimes he gives up.

Lewy body dementia can affect motor planning, attention, visuospatial processing, and the ability to organize a sequence of actions. Parkinsonian movement difficulties may add another layer of complexity. We don’t know precisely which of these difficulties Matt experiences in any given moment.

What strikes me most, though, is what happens next.

Once I stop asking him to do things and begin pulling up the covers, settling him in, in whatever configuration de jour he is in, and kissing him good night, the demands change. He no longer has to figure out the next step. He can simply experience the familiar ritual.

What this exercise has changed for me: I realize a few things:

• how more patience will work here, where I might work on my self to find it in the moments of this nightly task
• that I might want to swap out the mattress he is on with the one unstairs which is still comfortable but slightly firmer to possibly enable him to move easier in it

I am reading this over and over again to dive deeper and deeper into what I can learn, how I can meet him in his world rather than expecting him to operate according to the rules of my world.

The only way I can figure out to better understand his world is to try to experience it through this kind of narrative

That’s the kind of understanding I’m hoping to develop through these stories, these tools.

For more about the purpose of this series, read Through Matt’s Eyes — TME Series to Begin.

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