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Navigating Dementia is a weekly podcast for anyone caring for someone with dementia, family and professional caregivers alike. Host Carlyn Lenfestey, a physical therapist and dementia care specialist with 25 years of clinical experience, uses real stories and everyday moments to show that behavior is never the problem. It's always the signal. Each episode teaches one meaningful insight through her Wheel of Function Frameworkâ˘, delivered like a conversation over coffee, not a lecture. There is always a better way.
My grandfather wasn't simply
wandering around without a purpose.
He knew exactly who he was.
He knew exactly where he was going,
and he was gonna go open that store.
The problem wasn't that it
didn't make sense to him.
The problem was that it didn't
make sense to everybody else.
Can I tell you a story?
It starts back in a little country
store on Main Street in a little
town called Limestone, Maine,
uh, close to where I grew up.
Uh, the store burned down years
before I was born, but somehow
it still really shaped my life.
You see, my grandfather, his name was
Steve, he owned that store for years.
Uh, if you needed milk or cigarettes,
penny candy, cold beer, uh, or even just a
scoop of ice cream, Steve was probably the
one that was gonna be handing it to you.
And there was even this tiny little
candlepin bowling alley way out in
the back where someone had to go
and reset the pins after, uh, every
frame, and I think he paid a kid
five cents a day to do that for him.
It was the kind of place where everybody
kinda knew everybody, and my grandfather
was right in the middle of it all.
And that little country store became the
beginning of something much, much bigger.
It became the reason I built A Better Way.
When I picture my grandfather, dementia
isn't the first thing that comes to mind.
I see a quiet man with twinkling
blue eyes and a mischievous grin that
usually meant he was up to something.
And I remember sitting with him on
the sun porch on this olive green
vinyl couch, and we would eat sardines
on saltine crackers, which if I'm
being quite honest, I would've been
happier probably to have ice cream.
But, um, when we would finish our snack,
he would lift the cushion cover and sweep
all the crumbs under it and put it down,
and he would put his index finger up to
his mouth, and he would look at me as if
to say, "Shh, let's keep it between us."
Because both of us knew that if
my grandmother knew that we were
doing that, she would've killed us.
I remember walking to the back of the
garage at their house where there's this
huge rhubarb patch, and he would snap
off a piece for me, and we'd go inside,
and my grandmother would pour me a little
cup of sugar, and he would hand it to
me just grinning because one, he knew
how much I loved it, but two, I actually
think he loved the look on my face as
it would pucker up even more than that.
We would go out in his garden, and
we'd pick peas and green beans,
um, apples, and we would go back
inside, and we would make applesauce.
And he bought me my first pair of
ice skates, and I remember him taking
us ice skating when we were really
little and his knees still allowed it.
And every now and then, he would slip
me a dollar bill for no particular
reason at all, just that he was kind.
He wasn't a man of a lot of words,
um, but he didn't really have to be.
Uh, he had a quiet steadiness
about him that made you feel
safe just being around him.
And looking back now, I realize
that so many of my memories
are about ordinary moments.
Nothing big, nothing dramatic,
just being with my grandpa
And I think that's important because when
we talk about dementia, it's easy for the
disease to become the whole story, right?
But Steve was a person long
before he was ever a diagnosis
He was a husband, he was
a father, a grandfather.
He was a shopkeeper, a
gardener, a great neighbor.
Everyone loved him.
He was a man who had worked hard
his entire life and was deeply
respected in his little town.
That's the Steve I want you to know.
Because the better you know someone
before dementia, the more sense
what comes next begins to make.
As I got older, things start to change.
Not all at once, but looking back,
there's probably a lot of little signs
that the adults noticed way before I did.
But eventually, even I could tell
that something was different.
Some mornings, he would get up, and he
would go get dressed in his work clothes,
and he would start to head for the door
because he had somewhere he needed to be.
The store wasn't gonna open itself.
Customers were waiting for him.
But the only problem with that was
the store had burned down years
before, and I remember hearing
people say he was confused.
That was the explanation, right?
He's just confused.
And as a little girl, I accepted that
because I didn't know any different.
But years later, I realized
something that completely changed
the way I understand dementia
My grandfather wasn't simply
wandering around without a purpose.
He knew exactly who he was.
He knew exactly where he was going,
and he was gonna go open that store.
The problem wasn't that it
didn't make sense to him.
The problem was that it didn't
make sense to everybody else
And then there was my grandmother.
Her name was Maddie, and she
loved my grandfather fiercely.
Uh, she worried, and she was very
frustrated and completely exhausted.
Um, but asking for help
was not who she was.
And in her mind, taking care of Steve
was her sole responsibility, and
she believed that she was the only
one that could do it, and so she
carried it quietly day after day.
She tried all the things with him, right?
She tried to explain.
She tried to reason with him.
She tried to convince him that the store
was gone, and when that didn't work,
she worried even more, and looking
back now, I don't think what
she needed was to try harder.
I think she needed someone to help her
understand what she was seeing in front
of her because once you understand what's
really happening, everything changes.
And for a long time, my grandfather's
story was just that, his story.
I didn't grow up thinking for sure that
I would spend my career in dementia care.
Honestly, I don't think I had any
clue where my career would take me.
I started out, um, as a physical therapist
because I had been a student athlete.
I had gone to a fair amount
of physical therapy myself,
and I thought, "This is fun.
I would love to help athletes."
But the reality was that early in my
career I started working with people who
were recovering from strokes and broken
hips and spinal cord injuries and brain
injuries and all kinds of other things
that took me away from my original plans.
And over time, what I noticed was that
more and more of my patients were living
with dementia, Even after all the years
I went to school, even after becoming a
physical therapist, I still didn't feel
like anyone had actually taught me how to
care for a person living with dementia.
I knew how to transfer them safely.
I knew how to evaluate their
strength and their balance.
I knew how to treat a shoulder.
I knew how to treat a knee.
But when somebody would say
to me, "Why does my husband
keep trying to go to work?"
Or, " Why can't I just
explain this to my mom?
Why doesn't she understand?"
I realized something.
Nobody had really taught me how to
answer those questions, and I couldn't
stop thinking, "How is this still true?"
How could families still be
carrying the same confusion that my
grandmother carried decades earlier?
Decades earlier.
How could professionals still be
graduating without understanding
of the most common condition
that we would see in healthcare?
And the more families I met,
the more I realized that my
grandparents were not the exception.
Their story was happening over
and over again, just with different
names and different faces.
And every week, I would meet someone
who was trying so hard just to do the
right thing, and they'd ask me Why is
their mom asking to go home all the time?
And why their dad wouldn't take a
shower anymore, and why someone who had
always loved to cook suddenly refuse to
even step inside the kitchen anymore.
The situations were all different.
. But underneath every single one
of those was another question.
What was this trying to tell me?
And somewhere along the way, I realized
I'd been asking the wrong question too.
Instead of saying, "How
do I make this stop?"
I started asking, "What can
I learn from this situation?"
And that one little
shift changed everything.
It changed the way I practice
as a physical therapist.
It changed the way I worked with families,
how I talked to them about dementia.
It changed the way I looked back
at my own grandparents and all
of their different experiences.
I don't think Steve was
trying to be difficult.
I don't think Maddie failed him.
I think they were both trying to do
the very, very best they could with the
understanding that they had at that time.
And honestly, I think that's still
true for so many families today,
and that's why I built A Better Way.
Not because I have all the
answers, because I don't.
Nobody does.
But because I believe that
families deserve better questions
than what they've been asked.
Questions that move us beyond,
"How do I make this stop?"
and toward, "What is
this change telling me?"
Because sometimes the signal is
something the person starts doing, and
sometimes it's something they stop doing,
but whatever that change is, I believe
that it's telling us something that
is worth us paying attention to.
And that's what this podcast is about.
Together, we're going to learn how
to notice those changes, understand
what they might mean, and respond
with more confidence, more connection,
and a little less guesswork.
Let's find our way together