Living With Lewy.net

04/27/2026

We Tried To Go To Church Today

Well…
we tried to go to church today.

And by “tried,”
I mean we gave it a solid, three-hour, full-body, emotional warm-up.

The morning started with a search party
for glasses that were absolutely somewhere safe…
just not anywhere we could find them.

Then came the phone.
It wasn’t working.

(Translation: it wasn’t charged.)

So we practiced—together—
how to plug in the charger…
place the phone in the cradle…
and let it do its thing.

We practiced that a few times.

Then he decided to watch TV before we left,
which meant we needed the remote…

which, for a brief but meaningful moment,
was apparently his phone.
the phone charger.
A guitar tuner.
And also… possibly everything in his hand.

The actual remote,
as it turns out,
had been carefully stored
inside a glasses case.

Of course it had.

At one point,
we were dressed.
Ready.
Standing at the door.
Victory.

I made the rookie mistake of asking,
“Will you be warm enough in that?”

He said no
and went back inside for a jacket.

Seven minutes later,
I went looking for him.

I found him in the kitchen…
jacket over his arm…
eating ice cream straight from the container
like it had been calling his name all morning.

We did eventually make it to the car.

There was a porch speech somewhere in there,
for any neighbor within his shouting distance,
something about not being afraid to go places
even if people think you’re… less than.

And then a reminder
that I am, apparently,
controlling
and condescending.

(If you’ve been here… you know.)

We made it to church.

We made it home.

I opened the refrigerator later
and saw the ice cream sitting there…
and made a very conscious decision
to leave it exactly where it was.

Because sometimes
peace is more valuable
than being right about ice cream.

The afternoon brought a dog bowl
filled with lasagna.

(We pivoted.)

And later,
a small food scavenger hunt
where the dog bowl filled with lasagna was in the refrigerator,
the lasagna and the chicken were in the pantry,
the ice cream is still in the refrigerator,
and nothing was quite where it started.

Dinner is now in the oven.
The dog has been fed.
The phone is charged.
(For now.)

And I am…
tired.

If your day looked anything like this today—
or last week
or five minutes ago—
you’re not alone.

Sometimes caregiving looks like
organization, patience, and grace.

And sometimes it looks like
ice cream detours,
mystery remotes,
and quietly choosing your battles
one moment at a time.

QUESTION: Have you ever had a “we tried to go somewhere” kind of day?

04/26/2026

The I See You Series - Living With the Relentless

I see you when it’s not one big thing…
it’s a hundred small things that never seem to stop.

I see you answering the same question
again…
and then again.

I see you fixing something
you just fixed.

I see you watching a simple task
turn into confusion…
and stepping in without making a big deal of it.

I see you being the reminder,
the backup plan,
\the steady presence
for things that used to just happen.

I see you carrying the mental list
that never fully clears.

Not dramatic.
Not visible.
Just relentless.

And still…
you keep showing up.

That kind of steady, unseen love?

I see you.

04/20/2026

🌿 A Little Neighborly Chat About Lewy Body Dementia
(From Nora Poppins at LivingWithLewy.net)

The other day I found myself explaining a few things about Lewy Body dementia to a neighbor.

Not in a medical way.
Not with big words.

Just in the way you might explain something over the fence while watering the roses.

Because when you meet someone living with Lewy Body dementia, it helps to understand a few things that may look puzzling from the outside.

Let’s start with the big one.

LEWY BODY DEMENTIA

Lewy Body dementia is a brain disease that affects thinking, movement, sleep, emotions, and how the brain interprets the world.

It can look different from day to day.

One day someone may seem almost like themselves.
The next day they may be confused, tired, suspicious, or overwhelmed.

It’s not stubbornness.
It’s not attitude.

It’s the brain having trouble sorting out reality.

Now let’s talk about two things that often come along for the ride.

CAPGRAS SYNDROME

Capgras is when the brain becomes convinced that someone familiar has been replaced by an impostor.
Yes, it sounds like something from a detective movie.

But for the person experiencing it, it feels very real.

Your husband might look exactly like your husband…
but the brain whispers,

“Something isn’t right about him.”

Sometimes the person with dementia will say things like:

“You look like my wife, but you’re not really her.”

It’s not meant to be hurtful.

Their brain simply isn’t matching faces and feelings the way it used to.

So instead of arguing, caregivers often respond with calm reassurance.

“Hi there. I’m glad you’re here with me.”

A little kindness goes much further than trying to win the argument.

Now the third piece of the puzzle.

ANOSOGNOSIA

This is a fancy word that simply means:

The brain cannot recognize that it has an illness.

So the person with dementia truly believes they are fine.

They may say:

“I don’t have memory problems.”
“I don’t need help.”
“You’re the one who’s confused.”

And from their point of view, they’re telling the truth.

Their brain literally cannot see the changes happening.

It’s a bit like trying to convince someone they’re wearing glasses when they can’t feel them on their face.

This is why reasoning and logic often don’t work the way we expect.
Instead, caregivers learn to work around the confusion rather than through it.

A little creativity helps.

A little patience helps.

And sometimes a sense of humor helps most of all.

Because when you understand what’s happening inside the brain, the behavior suddenly makes more sense.

And when things make more sense…

We can meet each other with a little more compassion.

If you ever find yourself talking with someone living with Lewy Body dementia, the most helpful things you can bring are simple

Kindness.
Patience.
And a calm voice.

Everything else is just extra credit.
— LivingWithLewy.net

_____
Question: Have you ever had to explain dementia to a friend, neighbor, or family member? What helped them understand it best?

“Living with Lewy is a cozy, whimsical online cottage for dementia caregivers, offering hope, humor, and practical support. Find real-life stories, printable resources, and tips for navigating Lewy Body dementia — one gentle, slightly sassy step at a time.”

04/19/2026

The I See You Series —

I See You When You’re Doing the Quiet Detective Work Behind the Scenes

I see you solving little mysteries all day long.

The kind no one else even notices.

I see you watching closely…
trying to figure out why something changed.

Why dinner suddenly tastes “wrong.”
Why the shoes that were fine yesterday are now “too tight.”
Why the hallway feels unfamiliar today.

I see you running through possibilities in your mind.

Is it the lighting?
The time of day?
The medication?
Too much noise?
Not enough sleep?

I see you trying one small adjustment at a time.

Moving a chair.
Changing the routine.
Rephrasing a question.
Offering a different cup.
Turning the light on before the confusion settles in.

Sometimes it works.

Sometimes it doesn’t.

And tomorrow you try again.

Quietly gathering clues
like a caregiver-detective no one trained for the job.

Behind the scenes,
you are constantly figuring things out
so the day can keep moving forward.

It may not look like creativity to the outside world.

But it is.

And I see you.

_____

Caregivers — what little mystery have you been solving lately?

04/12/2026

The I See You Series — The Guilt No One Talks About

I see you when every decision seems to come with guilt attached.

I see you carrying the quiet weight of wondering
if you’re doing this wrong.

I see you replaying moments in your mind
long after the day is over.

The tone of your voice.

The way you answered.

The moment your patience ran thin.

I see you feeling guilty for needing help.

For being tired.

For wishing, even for a second,
that things were different.

I see you feeling guilty when you think about the future.

When your mind quietly asks questions
no one ever wants to ask.

I see you feeling guilty for moments of relief too.

A peaceful hour.

A good night’s sleep.

A small pocket of quiet.

Because loving someone through dementia
can make even breathing room feel complicated.

But here is something steady I want you to know:

You are trying to love someone
inside a situation no one prepared you for.

And sometimes guilt isn’t proof that you’re failing.

Sometimes it’s simply the shadow
of caring very, very deeply.

And if that shadow has been following you lately—

I see you.

04/07/2026

Most people know Jay Leno as a comedian and car collector.
I remember him as the man who took the time to call a stranger to say thank you.

Back in 2013 a friend of mine was making a cake for Jay Leno as a thank-you for performing at their annual nursery convention. She was great at cakes but not decorating, so she asked if I could make a topper.

I did a little research and learned about Jay’s beloved 1955 Buick Roadmaster called “Rosebud.”

It was the first car he bought when he moved to California.
He took his wife Mavis on their first date in that car.
He drove it to his first appearances on television.

So I made a little cake topper of Jay leaning on his car.

I wasn’t even at the event.

But the next day my phone rang.

And on the other end was Jay Leno, personally calling to thank me for making the topper.

He was kind.
Genuine.
And incredibly gracious to take the time to call someone he didn’t even know.

I’ve never forgotten that.

Recently I read that Jay Leno’s wife Mavis is living with Alzheimer’s disease… and that Jay is her primary caregiver.

My heart broke reading that.

But it also comforted me.

Because I know the kind of man he is.

And I know the woman who once rode beside him on their first date in that little Buick named Rosebud is married to someone who will love and care for her to the very end.

And that matters.

Dementia changes so much… but love like this reminds me what still remains.

04/05/2026

(The I See You Series)
I See You When the Kind of Tired You Feel Has Nothing To Do With Sleep

I see you carrying the kind of fatigue that settles deeper than your muscles.

The kind that lives in your mind.

In your nerves.

In the part of you that never fully shuts off.

Even when you sit down…
your brain is still listening.

Still watching.

Still calculating what might happen next.

I see you waking at the smallest sound in the night.

A door.

A cough.

Footsteps in the hallway.

I see you sleeping lightly because somewhere inside you know
you are the safety system now.

The one who notices.

The one who responds.

The one who steadies the moment.

Most people think tired means needing a nap.

But this tired is different.

It comes from holding responsibility that does not clock out.

From loving someone whose needs do not pause when the day ends.

If your bones feel heavy
and your mind feels worn thin…

please know this:

That kind of tired makes sense.

I see you carrying it.

And I see you.

04/02/2026

Update: We survived the Fumigation of 2026.

And I feel like that deserves a commemorative t-shirt.

You may remember that a couple days ago I shared about the emotional whiplash of preparing for the fumigation… the packing, the confusion, the Elvis concert in the restaurant, and the very kind strangers who paid for our lunch.

What I didn’t share was my absolute dread about staying away from home.

Our last several hotel experiences have been…

let’s just say…

DISASTROUS.

Think:

• middle-of-the-night hallucinations
• narrating what he sees through the peephole in the door
• yelling at imagined people in the hallway• me praying we wouldn’t have to explain things to hotel management or the police

So honestly, I thought overnight trips were something we simply couldn’t do anymore.

But fumigation doesn’t give you a choice.

So I tried something different.

Instead of a hotel, I rented a little Vrbo duplex in a nearby city.

Two bedrooms.

Huge yard.

Lots of “quiet neighborhood” rules.

Basically a place where if things went sideways… we wouldn’t be sharing walls with 200
other people.

Getting there was rough.

But once we arrived…

something surprising happened.

IT WORKED.

Night #1
We both slept through the night.
No hallucinations.
No freaking out

No peeping through windows narrating imaginary activity.

Night #2
A tiny hint of a possible Lewy moment… that never fully materialized.

The next day we went to breakfast, visited a couple galleries, walked around town, grabbed coffee, and actually had a peaceful afternoon.

This morning we drank coffee while listening to a Chuck Swindoll sermon, packed up, and
headed home.

No drama.
No 911 calls.
No chaos.

Just… normal.

I spent the afternoon putting the kitchen back together after the fumigation.

And somewhere in the middle of unpacking cereal boxes and spices, I realized something important:

A few days ago I thought traveling away from home was impossible now.

But this trip showed me that with a little planning…

quiet space
separate bedrooms
no neighbors overhead
no long hallways full of strangers

…it might still be possible.

So yes.

We survived the fumigation of 2026.

And more importantly…

we discovered that maybe we haven’t lost the ability to get away after all.

That feels like a small miracle.

_____
Caregivers — what unexpected “badge of honor” have you earned on this journey?

04/02/2026

Update — and a heartfelt thank you

I wanted to come back and share an update with everyone who offered encouragement, advice, and understanding over the past months as I tried to navigate the VA Aid & Attendance process for my mom.

Yesterday I reached out to Congressman Salud Carbajal’s office here in my local office to open a constituent case. My mom has advanced Alzheimer’s, and despite being approved for Aid & Attendance benefits back in February, the funds had been held up while the fiduciary process slowly worked its way through the system.

After months of forms, phone calls, conflicting instructions, and delays — including a hardship request back in December — I finally reached the point where I realized I needed help cutting through the red tape.

I spoke with Greg in Congressman Carbajal’s local office. Greg contacted the VA fiduciary department in Utah, and today I received a call from Scott McAllister, Congressional Liaison/Appeals Designee with the Salt Lake City Fiduciary Hub.

He called to apologize for the delay, to thank our family for my father’s World War II service (he served in the Battle of Okinawa), and to let me know that movement on my mom’s case should happen very soon.

Not long after that, Greg called to follow up and make sure the VA had reached me.

The case is still open, but for the first time in many months I feel like my voice has actually been heard and that real action is finally underway.

So today I just want to say thank you — to everyone here who shared information, encouragement, and their own experiences. This road can feel incredibly lonely when you’re trying to advocate for someone who can no longer advocate for themselves.

Sometimes the system works slowly.
Sometimes it takes persistence.
And sometimes it takes someone willing to help push the door open.

Today, it feels like that door finally moved.

For anyone else walking this road — don’t be afraid to ask for help when the process gets stuck. Sometimes one person making one phone call can change everything.

03/31/2026

Emotional whiplash… Lewy edition.

Anyone else living with dementia ever experience emotional whiplash days like this?

A couple of days ago there was a pocket of joy.
Church was beautiful. Worship was peaceful. The message was encouraging.

For a little while life felt… normal.

Then we came home and started preparing the house for fumigation. We had planned all of
this together earlier in the week — met with the company, signed the agreement, talked
through where we would stay for the two nights we have to be out of the house.

But yesterday it was clear that in his mind…

none of that had happened.

All evening I was accused of making decisions without him.
Not including him.
Controlling things.

He kept asking what he could do to help.

I kept saying, “Pack for three days.”

He kept saying, “Don’t tell me what to do.”

It was one of those nights.

This morning when I woke him up… he was already dressed and packing.

Into a trash bag.

Contents included:
• a metal baking sheet
• his alarm clock
• five jackets
• one pair of underwear
• one pair of socks
• an anti-chafing stick

The glasses he was looking for the whole time were under the trash bag.

We dropped the dog at boarding, handed the fumigation company the keys, and suddenly
had the entire day to fill before we could check into the place I rented for us.
The day was… rough.

He wanted to go home every five minutes.

I kept explaining we couldn’t go home until Wednesday.

Each explanation triggered another round of
“You never tell me anything.”
“You make all the decisions.”
“You’re controlling.”

We tried breakfast.
(He had a brownie sundae.)

We tried driving to the lake.
Due to road construction detours, we got lost.

We tried going back to town.

Finally we ended up near a park where we sometimes walk and play Yahtzee.

When we went into the restaurant for lunch something shifted.

Suddenly he was channeling Elvis.

Loudly.

He was singing “Don’t Be Cruel” to the entire waiting area.

Then he walked over and sat down at a table with two women and told them he wanted to
sing a song for his wife sitting “over there.”

They asked if they could video him.

That was all the encouragement he needed.

More Elvis.

Louder Elvis.

Eventually I coaxed him back to our table and we finished lunch.

As the two women left, they stopped by our table, shook our hands, and told us they had
enjoyed the performance.

A few minutes later the waitress brought our check.

And said…

“Your bill has already been taken care of.”

Those two women had quietly paid for our lunch.

I burst into tears.

They will never know how much that small act of kindness meant after such a difficult day.

Sometimes this life with Lewy is chaos.

Sometimes it’s exhaustion.

Sometimes it’s Elvis concerts in restaurants.

And sometimes…

it’s strangers reminding you that kindness still exists in the world.

And yesterday, right in the middle of a Lewy day, kindness quietly took a seat at our table.

03/29/2026

Pockets of Joy

There is a lot of grief in this community.

And it is real.
And it deserves space.

But today I want to share something else too

A pocket of joy.

Yesterday, while I was outside preparing our home for fumigation — trimming plants, cutting back rose bushes, doing all the prep work that needed to be done — I came inside and found this waiting for me.

One of the roses I had cut.

My husband had picked it up, put it in a little vase, and left it for me to find.

Just a simple rose.

But it felt like such a gift.

And then today at church, I saw another glimpse of the man he has always been.

Because before Lewy came to live with us, my husband was always the first one to reach out to someone new. The first one ready to encourage someone, pray with someone,
welcome someone.

This morning we were sitting in the back row when a man sat a few seats down from us. He
introduced himself and shared that it was his first time at our church.

When the service began, my husband quietly moved over next to him, put his arm around
his shoulder, and prayed for him.

And I saw him.

The man I have always known.

Just for a moment.

Those moments don’t erase the hard parts.

But they are little windows.

Little reminders.

Little pockets of joy.

And today…
I’m choosing to celebrate them.

____
What pocket of joy can you lean into today?