Living With Lewy.net, San Luis Obispo, CA (2026)

06/03/2026

Every Wednesday, I’ll be sharing a short excerpt from Me With Dementia Talking About… — a book written to help caregivers better understand what dementia may FEEL like from the inside out.
These are short reads… but often big perspective shifts.
Today’s excerpt:
“Me” with Dementia, Talking About Why It’s Called a Brain Disease

“You might hear people say, ‘Oh, she has memory problems,’ or ‘He’s just getting forgetful.’ But what’s happening to me isn’t just forgetfulness — it’s a brain disease.

Here’s why:
My brain isn’t just a lump of gray mush sitting behind my eyes. It’s an entire city, full of neighborhoods that each have their own jobs.
● The frontal lobe helps me plan, make decisions, and behave politely in public.
● The temporal lobes store my memories and help me understand language.
● The parietal lobe helps me find my way around the world — where my hands are, how to button a shirt, how far away that step is.
● The occipital lobe helps me see and make sense of what I’m looking at.
● The hippocampus — my little librarian — files new memories where they belong.

When dementia moves in, it doesn’t stay in one room.

It’s not just the “memory department” that goes dark. The disease starts breaking down neurons and tangling communication wires all over the city. Lights flicker out here, phone lines die there. Some neighborhoods — like reasoning or language — go quiet long before others.

That’s why I might:

● Lose track of time or forget the day.
● Struggle to follow directions.
● Get confused by what I see or hear.
● Say or do something completely out of character.

It’s not because I’m lazy, rude, or choosing to forget. It’s because the damage is physical. Neurons are dying. Brain tissue is shrinking. The highways of information inside my head are full of detours and dead ends.

That’s why dementia is a brain disease — it’s not just in my mind, it’s in my brain. You can actually see the changes on scans: the shrunken areas, the thinning cortex, the scarred pathways where messages used to travel fast and clear.

So when you see me struggling, remember: I’m not doing this on purpose. I’m living in a city where the streetlights keep going out, and I’m still trying to find my way home.

Be patient with me when I forget.

Be gentle when I resist.

Because even if parts of my brain are fading, my heart still remembers what love feels like.

If this perspective helped you better understand someone you love, the full book contains 500+ topics designed to help caregivers, families, friends, and professionals better understand the dementia experience one small moment at a time.
Available at: https://www.amazon.com/dp/B0FXRD4N35

06/01/2026

I See You series
I See You Making Plans…Alone

I See You
I see you making plans
for something hard.

Not just the appointment,
or the procedure,
or the date circled on the calendar.

I see you planning for everything around it.

Who will help?
Who will stay?
Who will check in?
Who will remember the things
you normally carry without thinking?

I see you making lists
and backup plans
and backup plans for the backup plans.

I see you worrying about yourself
for a moment,
and then immediately worrying
about someone else.

I see you carrying the details
that no one else can see.
The phone calls.
The arrangements.
The quiet decisions.

I see you wishing
someone else could take the clipboard
for just a little while.

And I see how lonely that can feel.

If no one has said it lately,
I hope you know this:

The weight you're carrying is real.

And even here...

even in the planning,
even in the worrying,
even in the doing-it-alone parts...

I see you. 💜

05/27/2026

Every Wednesday, I’ll be sharing a short excerpt from Me With Dementia Talking About… — a book written to help caregivers better understand what dementia may FEEL like from the inside out.
These are short reads… but often big perspective shifts.
Today’s excerpt:
“Me” with Dementia, Talking About What Happens When Neurons Break Down

“Well, remember those lively little messengers I told
you about — the neurons who were always gossiping,
sparking, and passing notes? Dementia doesn’t exactly
kill them all off at once. It’s sneakier than that. It
starts by slowing their conversations, mixing up their
messages, and leaving a few of them standing in the
hallway holding notes that never get delivered.

At first, it’s just a few. Maybe the ones in charge of
remembering names or keeping track of time. They still
try — oh, they try — but their messages start getting
garbled.

Instead of ‘You just had breakfast,’ I might get
‘Something about… food?’

Or instead of ‘This is your husband,’ my brain might
whisper, ‘He looks familiar, but I can’t quite place him.’

As more neurons get tangled or die off, the whole
neighborhood of communication starts to flicker.
Streets go dark. The bridges between parts of my brain
crumble a little. The memories I’ve built — the recipes,
faces, and favorite songs — are still stored in there
somewhere, but the road to reach them is blocked by
debris.

And when the signals can’t travel smoothly, everything
feels harder:
• Thinking slows down, like wading through wet
cement.
• Words slip away mid-sentence.
• Feelings swing without warning because the brain’s
‘emotion thermostat’ gets stuck.
• My movements, balance, or judgment might falter,
because the messages from my brain to my body
take the long way around — or don’t arrive at all.

Here’s the thing: I still want to do what I used to. I still
want to remember, decide, move, and connect. But
when my neurons misfire or fall silent, my thoughts
scatter like dropped marbles. So if I seem lost, it’s not
because I’ve vanished — it’s because the path that leads
to me is under construction.

Some days, a few neurons rally. The lights flicker back
on. I might tell a story from forty years ago clear as
day, and then forget what we were talking about five
minutes later. That’s just the rhythm of my changing
brain — light, dark, spark, silence.

So when you see me hesitate, repeat, or drift — don’t
think the person you love is gone. I’m still here. Some
of my neurons just need a little extra time to find the
right doorway.”

If this perspective helped you better understand someone you love, the full book contains 500+ topics designed to help caregivers, families, friends, and professionals better understand the dementia experience one small moment at a time.
Available at: https://www.amazon.com/dp/B0FXRD4N35

05/25/2026

Over the past few years, I’ve been quietly writing.

What started as scattered journal notes during our journey with Lewy Body dementia slowly became something much bigger:
a memoir.

It’s honest.
Heartbreaking sometimes.
Occasionally funny in that “if we don’t laugh, we may cry in Costco” kind of way.
And deeply centered on the complicated reality of loving someone living with Lewy.

Before moving toward publication, I’d love to place the manuscript into the hands of a small group of thoughtful beta readers willing to read it and share honest feedback about the emotional experience of the book.

I’m especially interested in hearing from:

* caregivers
* people familiar with dementia or chronic illness
* readers who enjoy memoirs
* and even a few readers who know very little about Lewy Body dementia

At this stage, I’m not looking for proofreading as much as honest emotional feedback:
Did it feel real?
Did it feel compassionate?
Did it help you understand this strange “alternate universe” caregivers sometimes live inside?

If you think you might genuinely be interested in reading and reviewing an early draft, please send me a private message or comment below.

And truly…
thank you.

This book has been written with a lot of love, grief, exhaustion, humor, and heart.

05/24/2026

Susan Schneider Williams, wife of the late actor and comedian Robin Williams, shares their struggle with in SPARK: Robin Williams and His Battle with Lewy Body Dementia © – a disease that went undiagnosed until after Robin’s death.

Find this documentary in the LBDA Mediflix library to learn about and the importance of an early and accurate diagnosis.

Watch now: https://ow.ly/sKGT50Z3ron

05/24/2026

I See You series
I See You Loving Someone Who Is Slowly Slip Sliding Away

I see you
loving someone
who is slowly slip sliding away.

Not all at once.
Not in one dramatic moment.

Just little pieces here and there.

A forgotten step.
A lost word.
A task that suddenly feels too hard.
A look that says, “Wait… how do I do this again?”

I see you noticing the changes
while trying not to panic over every one.

I see you holding onto the moments of clarity
like tiny treasures you tuck into your pocket.

The good conversation.
The familiar laugh.
The glimpse of them
that still feels wonderfully, painfully familiar.

I see you missing someone
who is sitting right beside you.

I see you smiling through moments
that quietly break your heart.

I see you learning
that grief does not always arrive after goodbye.

Sometimes it comes softly,
in little daily disappearances.

And I see the ache
of loving someone who is still here…
and also slowly slipping farther from reach.

That kind of grief is hard to explain.

But even here —
in the loving, the longing, the remembering,
and the letting go one tiny piece at a time…

when the days feel heavy
and your heart feels tired from holding so much…

I see you.

05/22/2026

Apparently We’re Repairing Toilets at 1AM Now

For the past week, every single night around 1AM, I have been abruptly awakened by what sounds like a freight train running beneath my bedroom floor.

Nope.

Just the toilet.

Running.

Again.

The first night, I stumbled into the bathroom half asleep to discover my husband standing over the toilet with the tank lid completely removed and various tank parts apparently “readjusted”.

At 1AM.

Because evidently we are now accepting emergency plumbing appointments in this house.

To be fair, because of the “readjustments,” the toilet really WAS running, and he was genuinely trying to fix it. So there I stood in the middle of the night watching YouTube videos about toilet tanks while trying to remember how life got so weird.

Miraculously, I fixed it.

He was appreciative.

The toilet was quiet.

Peace was restored.

Or so I thought.

Because now this has become our nightly routine.

Every night around 1AM, (when he makes his morning jaunt into the bathroom), the toilet begins “running,” and I wander into the bathroom to find him standing there with the tank lid off, carefully holding up the float on the right side while repeatedly flushing the toilet over and over again.

Hold float.
Flush.
Wait.
Flush again.
Hold float.
Repeat.

Like some sort of highly specialized midnight water ritual.
The difficult part is that the FIRST night he accepted help.

Now if I say:
“Maybe just let it fill up?”
or
“I think it will stop on its own…”
…he gets upset because in his mind, he is actively solving a problem.

Meanwhile, in MY mind, it is 1AM and the plumbing symphony beneath my bedroom floor is slowly destroying my remaining brain cells.

And honestly?

At 1AM, my dementia caregiver “therapeutic communication skills” are apparently not at peak performance.

Somewhere between exhaustion and absurdity, I realized this is such a perfect picture of dementia caregiving.

Not just the heartbreaking moments.

Not just the medical appointments.

Not just the grief.

But the bizarre little moments nobody warns you about…
like standing in your bathroom in the middle of the night silently begging someone to stop performing toilet surgery.

So now I’m considering:
• a white noise machine
• earplugs
• replacing every single toilet part known to mankind
• or possibly just putting a tiny sign inside the tank that says:
“Sir, the toilet requires no further assistance.”

Dementia caregiving is truly the alternate universe nobody understands until they live in it.

Please tell me I’m not the only one supervising strange household engineering projects at ridiculous hours of the night.

What’s the strangest “repair project” your loved one with dementia has become determined to solve?

05/20/2026

Every Wednesday, I’ll be sharing a short excerpt from Me With Dementia Talking About… — a book written to help caregivers better understand what dementia may FEEL like from the inside out.
These are short reads… but often big perspective shifts.
Today’s excerpt:

“Me” with Dementia, Talking About Neurons

Well now, if you really want to understand what’s happening inside my head, we need to start with the basics — the neurons.

A neuron is one of the millions of little messengers living in my brain. Think of them as chatty roommates who never stop talking.

They use tiny sparks of electricity and chemical sprinkles to send messages like, ‘Blink,’ ‘Swallow,’ ‘Remember your daughter’s name,’ or ‘Don’t put your shoe in the refrigerator.’

Each neuron has a job to do:
• The dendrites are like little ears, always listening for gossip from other neurons.
• The cell body (that’s their “thinking chair”) sorts through the information and decides what to do with it.
• The axon is the long hallway they shout down to pass the message along to the next room.

But here’s the funny part — neurons don’t actually touch. They leave a polite little gap called a synapse.

So instead of bumping elbows, they whisper across the space with something called neurotransmitters — tiny chemical notes that say, “Psst… move your hand,” or “Hey, that smells like cookies.”

When all the neurons are healthy, the messages zip along fast and clear. It’s like a cheerful neighborhood of porch lights, everyone waving and saying hello.

But when dementia shows up, it’s like someone cuts the power lines, and those messages start sputtering, fading, or getting lost on the way.

So if you ever wonder why I forget, pause, or seem unsure — it’s not because I’m not trying. It’s because some of my little messengers got tangled in the hallway, and the message never made it through.

I’m still in here — it just takes my neurons a little longer to find the right words.

If this perspective helped you better understand someone you love, the full book contains 500+ topics designed to help caregivers, families, friends, and professionals better understand the dementia experience one small moment at a time.
Available at: https://www.amazon.com/dp/B0FXRD4N35

05/18/2026

When “Put Away” Stops Making Sense
(And why your person with dementia suddenly needs everything visible.)

A year ago, I labeled my husband’s closet and drawers because he was struggling to find things.
At first, word labels worked.

“Socks.”
“Shirts.”
“Underwear.”

Simple.

Then one day…they didn’t.

So I switched to picture labels. Tiny little drawings taped all over the dresser like some sort of dementia-themed department store. 😂

Did it magically solve everything?

Nope.

But it did help me keep things in the same place — which matters more than I realized.

And lately?

My HWLBD has become what Cas Aarssen from Clutterbug calls a “butterfly.”

If he can’t SEE it…
it no longer exists.

So now:

things live on countertops
piles appear on chairs
important papers migrate to random tabletops
drawers stay open
cabinets stay cracked open
and “put away” apparently means “hidden forever.”

Honestly, dementia changes how the brain processes:

memory
object permanence
visual organization
sequencing
and even the ability to search for something mentally

So closed drawers become confusing.
Cabinets become black holes.
And visual clutter can actually feel safer to the dementia brain because it provides constant reminders of what exists.

Meanwhile, the caregiver walks through the house muttering:
“Why is the stapler in the bathroom?” 🙃

Some things that sometimes help:

clear bins
open shelving
labels with pictures instead of words
fewer choices
consistent placement
baskets for “daily use” items
reducing how much is stored away
accepting that “organized” may need a new definition

And sometimes the labels aren’t even for them anymore.

Sometimes they’re for us.

Because caregiving slowly becomes:
“Creating systems so tired people can function.”

Not perfection.
Not Pinterest.
Just survival with dignity.

So if your house now looks like a cross between a daycare classroom, a rehab center, and a very confused thrift store…

I see you. ❤️

And if you’re currently standing in the kitchen holding an object wondering:
“How did THIS get HERE?”

Welcome to the club, friend.

05/17/2026

I See You series
I See You Fixing Things Behind the Scenes

I see you
trying to explain things
that should only need explaining once.

I see you giving directions
carefully,
kindly,
step by step…

only to watch the directions
float away mid-task.

I see you quietly redoing things,
cooling things down,
fixing things,
preventing disasters
and trying not to make anyone feel small
while you do it.

I see you getting up at 1AM
to the sound of something else needing attention.

Another mystery.
Another problem.
Another moment
you never planned to become responsible for.

I see you carrying the exhaustion
of always needing one ear open,
one eye watching,
and one part of your brain
constantly preparing for “what now?”

And I see you figuring it out anyway.

One strange moment at a time.

I see you.

Living With Lewy.net

06/03/2026

06/01/2026

05/27/2026

05/25/2026

05/24/2026

05/24/2026

05/22/2026

05/20/2026

05/18/2026

05/17/2026

Address

Website

Alerts

Contact The Business

Shortcuts

Share

Category