Living With Lewy.net

11/01/2026

I see you when someone says, “They seem so good today,” and you don’t know how to respond.

Because they are good — for these few minutes.

Because you’ve learned how to hold your breath
while the world sees the easier version.

You smile.
You nod.
You let the moment pass.

And part of you wonders if saying more would sound defensive,
or dramatic,
or unnecessary.

So you keep quiet
not because it isn’t true,
but because the truth is longer than this moment allows.

I see you standing there, holding both realities at once.

10/29/2026

This floral design pairs warm cream, deep teal, rusty red, and soft green with humor that caregivers will recognize. It looks perfectly at home on a cozy chair—even when the day has been anything but cozy. • Brings floral charm and a little unexpected humor to your room • Offers a knowing nod ...

10/29/2026

Me With Dementia Talking About Dark Adaptation

As evening comes, familiar things can become harder to make out.

A jacket on a chair may look different in shadow. The way to the bathroom may seem less certain than it did this afternoon.

I may need more light, more time, or someone to help me understand what I am seeing.

Here’s What’s Supposed to Happen

As light fades, the eyes become more sensitive. Rod cells are especially important for vision in dim conditions. Their light-sensitive pigment, rhodopsin, regenerates after exposure to light as part of dark adaptation.

Pupils also widen to admit more light. These changes take time; stepping from a bright room into darkness doesn’t instantly give us clear night vision.

The brain must still interpret the information that is available. Less detail can make that task harder.

But Here’s the Trouble with My Dementia

My eyes may adapt slowly because of age or an eye condition, while dementia may add difficulty interpreting shadows, shapes, or missing detail.

That doesn’t establish one particular failure in a “handoff” between rods and cones. Several parts of the picture may be involved.

Some people become more confused or distressed later in the day, often called sundowning. Poor lighting can contribute, but fatigue, disrupted daily rhythms, illness, and other factors can matter, too.

If an evening suddenly becomes very different from my usual pattern, please consider my health as well as the shadows.

What Caregivers Can Do to Help

- Light the places I need to use. Provide enough light along walking routes and in the bathroom. A tiny nightlight may not be sufficient for every person or space.

- Avoid abrupt changes where possible. Give me time before moving between bright and dim areas.

- Check reflections and shadows. Closing curtains or moving a lamp may help. Cover a mirror only if it is actually causing difficulty for me.

- Keep the route clear. Familiar furniture can help, but clutter and loose rugs can still cause a fall.

- Announce yourself before approaching. Let me see or hear who is there, and ask before touching or guiding me.

- Review repeated evening distress. Keep brief notes about timing, sleep, discomfort, medicines, and what helps, then discuss the pattern with the care team.

A little more useful light may help me find the chair, the doorway, or your face.

If I am still frightened, we can look for another explanation. The dark doesn’t have to carry every answer.

___
an excerpt from the book "Me With Dementia Talking About..." by Deb Jeffrey.

Available on Amazon: https://www.amazon.com/dp/B0HMJ9P9PT

10/28/2026

My evil twin is handling things today.

She’s grouchy. She’s impatient. And she is very much looking forward to 2 PM, when the respite caregiver arrives.

Let me explain.

My left knee has been bothering me, so I asked my doctor for a physical therapy order. I’ve been going. It’s helping.

Apparently, my right hip felt overlooked.

For the past week, it has been screaming for attention. Standing hurts. Walking hurts. So I called my doctor, got an imaging order, and scheduled an X-ray.

Simple enough.

Oh, bless my little heart.

The imaging center I usually use requires at least twenty minutes on the phone just to make an appointment. Mostly on hold. And if you need different types of imaging, you get to call different numbers.

An MRI? That’s one number.

A mammogram? Another.

An X-ray? Please enjoy another selection from our hold music collection.

But my doctor’s organization recently changed its recordkeeping system. Now we can communicate online, get updates, schedule appointments—even imaging!

How convenient.

I booked an appointment at a different imaging center. Online. No hold music. I was feeling quite pleased with myself.

This morning, after talking my husband through feeding the dogs and getting ready, we moved into the final departure events.

“Where are my glasses?”

“I need a sweater.”

Which reminded me that the backup bag—the one with a sweater, reading glasses, and sunglasses—is only useful if it is actually IN THE CAR.

Another item for my mental checklist. There’s apparently still room.

We left early because I didn’t know where we were going. I followed the GPS to a local hospital, with no instructions about where, specifically, this X-ray was supposed to happen.

Then I saw a building marked “Imaging.”

A reasonable place to start, I thought.

We parked some distance away, because naturally there were no close spaces, and I hobbled in.

Wrong place.

We needed the hospital’s main entrance.

So I hobbled back to the car, drove around the building, found another parking space some distance from where I needed to be, and hobbled in again.

My hip was participating fully in all of this.

At the front desk, I explained that I was there for an X-ray. The man asked for my name. No ID.

Then he asked for my husband’s ID.

My husband pulled out his phone.

“We need your wallet.”

He put the phone away, fished around, and pulled his phone out again.

I had a photo of his ID on mine. Would that work?

Yes.

I showed it to him. He entered some information.

“I’m sorry, we don’t find him in our system.”

He’s not the patient. I am.

Eventually, I was told I could go in.

My husband could not.

My husband with Lewy body dementia. Who had come with me because leaving him alone isn’t an option.

I was supposed to go farther into the hospital for my X-ray and leave him there, in a strange place, without me?

No.

By then, I was done.

“Cancel my appointment.”

And we hobbled back to the car.

No X-ray. Same painful hip. Considerably less patience.

Then I got to call my doctor again and ask for another imaging order for the place with the twenty-minute hold.

At least I know where to park there.

I just wanted to get my hip checked.

But before I could be the patient, I still had to get the dogs fed, get us both ready, find the glasses, account for the sweater, navigate an unfamiliar place, and make sure my husband was safe.

And after all that, I came home still needing the appointment.

That’s the part that wore me out today.

I need care, too. And getting it feels like another job I have to figure out how to do while doing the job I already have.

I love my husband. I’m also hurting, tired, and fresh out of gracious responses to unnecessary complications.

The Lord and I can talk about my attitude.

Right now, I’m watching the clock.

Come on, 2 PM.

My evil twin needs to sit down. 💛

Anybody else ever set out to do one simple thing for yourself and come home needing a nap and an attitude adjustment? Tell me about it. My evil twin could use the company. 💛

10/27/2026

How one little pencil can alter your day…

You know how one little thing can change the entire direction of your day?

Today, that one little thing is my Apple Pencil.

I’m in week four of my Leverage Your Art class—you know, the one I won the scholarship for! This is Build Week, and I am ready to build.

My Apple Pencil, however, has apparently decided it’s on a different schedule.

This morning, its pressure sensitivity stopped working. For those of you who don’t draw digitally, that’s the feature that lets me make a line light or dark depending on how hard I press. It’s kind of a big deal when you’re trying to paint.

The pencil is one year and eight days old.

One. Year. And. Eight. Days.

I’ll just let that sit there for a moment.

I spent the next half hour working my way through all the “try this” suggestions. I tried this. I tried that. I may have even tried looking at the pencil sternly.

No luck.

So now I’m on hold with Apple, waiting for a specialist.

The latest update told me a specialist would be with me momentarily.

That was ten minutes ago.

Apparently, Apple and I have different definitions of “momentarily.”

As I sit here with the phone to my ear, I keep thinking I could use this time to paint the outline I have of Nora—with that familiar “I’ve been on hold so long I may have celebrated another birthday” look on her face.

Oh, wait.

I can’t.

Because the pencil I need to paint Nora looking like she’s on hold is the very reason I’m on hold.

Some days, you just have to laugh. Or look sternly at your pencil again.

Has one little thing ever completely rearranged your plans for the day?

See less

10/26/2026

Your calendar already holds
everyone’s appointments.

This one holds a little
encouragement for you, too.

A little Nora.
A little humor.
A little joy.

The 2027 Caregiver Joy Calendar

Coming November 6

Join the calendar VIP list
Link in bio

10/26/2026

Dementia caregiving comes with a lot of things. Apparently, one of them is an ongoing scavenger hunt.

No clues. No prizes. Just me, opening the same drawer for the fourth time because surely it has to be SOMEWHERE.

A couple of months ago, our coffee scoop disappeared.

I checked the usual places. Then every drawer, cabinet, and shelf in the kitchen—anywhere it might have been “put away” and could reasonably be recovered with a small search party.

Nothing.

The coffee scoop remains an unsolved case.

Then, early this morning, I went to grab a doggie poo bag and discovered that the entire economy pack had disappeared.

Twenty-one rolls.

We are not talking about one little bag that slipped behind something. We are talking about a BOX. A substantial box. A box I felt fairly confident I could locate.

I asked my dear hubby, who has Lewy body dementia, if he knew where it was.

He had no idea what I was talking about.

So the hunt began. Usual places. Unusual places. Places I checked while thinking, “Well, this would be ridiculous.”

By 6 p.m., I was working on dinner, and the box was still missing.

I went to get something from the refrigerator and thought…maybe I should check the freezer.

At this point, “ridiculous” was no longer grounds for ruling anything out.

I opened the freezer, looked around, and was just about to close it when I spotted something tucked away in the very top drawer.

The economy pack.

All twenty-one rolls of doggie poo bags.

Frozen.

Apparently, we’re buying in bulk AND preserving freshness.

I don’t know what prompted that particular storage decision. My husband couldn’t tell me, either. But the bags have been recovered, and another case is closed.

The coffee scoop, however, is still at large.

Oh, Lewy. It is always an adventure with you. Some days, I would settle for knowing where things are.

What’s the most unexpected place you’ve found something that had been “put away”?

10/25/2026

I See You..when you finally sit down at the end of the day
and realize you don’t have the energy to stand back up.

Not because you’re lazy.
Not because you’ve “done nothing.”

But because every part of you has been on duty all
day.

Your body.
Your mind.
Your heart.
This kind of tired doesn’t come from one hard thing.

It comes from holding many small things together
quietly, constantly, without relief.

So if you’re sitting there longer than you meant to,
if getting up feels like too much,
if the pause stretches on

I see you.

And you are not failing this moment.

____

You matter here, too.

From my book, I See You - A Sweet Little Book of Validation for Caregivers.

More encouragement & the book: https://www.amazon.com/dp/B0GN259GL1

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10/24/2026

Meet Nora Poppins — and my mom, Elenore, the woman who inspired her. That’s me, Deb, beside her.

You’ve probably seen this little lady popping up around here. Hair in a bun. Sometimes holding a cup of tea. Occasionally looking like she, too, has answered the same question fourteen times before breakfast.

I thought it was time for a proper introduction.

Meet Nora Poppins. 💛

Nora is inspired by my mom, Elenore. My dad called her Nora. Her name, a little of her spirit, and the familiar things she’s said over the years are woven into this illustrated companion.

Mom gave us sayings like, “We all have our funnies.” And, “Boring is better.”

The older I get—and the longer I’m a caregiver—the more I appreciate that second one. An uneventful afternoon can be a lovely thing.

My mom now has advanced Alzheimer’s. My husband lives with Lewy body dementia. And I’m Deb—the caregiver, writer, and illustrator behind Nora.

I know how much can happen between “Good morning” and “What on earth now?”

I wanted to create a familiar presence for the person holding so much together. Someone who could sit beside the hard days, make room for a little humor, and remind the caregiver that they matter, too.

That’s Nora’s place here.

Sometimes she’ll bring something useful. Sometimes she’ll appear on a book, calendar, card, or a little something I’ve made for caregivers. And sometimes she’ll simply sit with us, without a single suggestion about what we “should” be doing.

There are days when we’ve had quite enough suggestions, thank you.

So, if you’re caring for someone and could use a little understanding, a little company, and the occasional laugh at the sheer absurdity of an afternoon—you’re welcome here.

Nora and I are glad you’re here.

Did your mom—or someone who helped raise you—have a saying that’s stayed with you?