Episode 3: Dementia, The Emotions No One Talks About
Full Transcript: English
Episode Three: Dementia: The Emotions No One Talks About
Intro
Part 1
If this is your first time listening — welcome.
I’m glad you’re here today — with me…
We started with language.
With why I chose English for this podcast.
With what healing even means — and how we carry our scars.
This is the third episode.
And it’s a personal one. One I knew I’d have to make sooner or later.
So if I speak a little more slowly — and maybe a bit more emotionally than usual — I hope that’s okay with you.
Now feels like the right moment to step into one of the core threads of this whole project:
Dementia.
Or more precisely — Alzheimer’s.
This isn’t a deep dive into Alzheimer’s.
It’s not a summary. Not an explanation. Not a list of facts.
It’s more like a glimpse — a thread — of something that’s still happening.
Still unfolding in real time.
I guess… it’s more like feeling my way through the fog….(almost literally..)
Something personal, painful, and very much alive in me.
I’ve just returned from Poland, where I visited my mother.
And I knew this visit would affect me.
I knew it would be heavy.
I even tried to prepare — reading research, listening to neurologists, to patients
and caregivers. Trying to gather what I could.
That’s something I do: I collect meaning. I reach for understanding.
It’s how I try to make things bearable.
But the truth is — nothing really prepares you.
Not for seeing her again, in this condition…
Not for the way your emotions pull you in every direction at once.
This trip left me full — and emptied out at the same time…
I knew, of course, that things had changed.
But I didn’t expect how much. Or how deeply it would undo me.
That’s why I wanted to record this episode while it’s still fresh.
Before it hardens into something explainable. Overpolished.
Because this kind of experience isn’t polished.
It’s not tidy or easy to understand.
Right now, it’s still confusing. Still alive.
Tender. Contradictory.
And also — I don’t think we talk about this enough.
Not honestly. Not all of it.
We talk about the disease.
But not about the feelings.
The ones that sneak in behind the facts.
The grief before death.
The guilt.
The flashes of rage.
The helplessness.
The moments where you want to hold your mother’s hand…
And the ones where you want to let go and never come back.
The part of you that wants to be kind.
And the part that just wants room to breathe.
That’s what this episode is about.
And no — I won’t be able to say everything.
Not even close.
This is just the beginning of that thread.
We’ll come back to it again.
But today — I want to stay close to just a few moments.
The ones still sitting heavy on my chest.
Part 2
I travelled to Poland by train.
It was a long journey — but I thought it would give me something.
Time to prepare. To breathe. To brace myself.
But you can’t really prepare for this. Not fully.
You try — you pack your bag, you bring your strongest self, your adult self, the one who’s read and listened and tried to understand.
But the moment you open the door and see her standing there… all of that slips away.
She looked at me — and smiled.
And yes, she still knows who I am. She says my name. She knows I’m her daughter.
But the present moment disappears.
Things she’s just said or done seem to vanish into thin air.
And yet… her body remembers me. Her face lights up. Her arms reach for me.
It wasn’t just Alzheimer’s I was seeing.
It was something older.
Because the way she looked at me — that mix of hesitation, helplessness, fear —
that’s not new.
That’s how she looked at me when I was a child. A teenager.
Back then, it wasn’t illness. At least not this one.
It was. Trauma. Exhaustion. Depression
She was often passive, fragile, overwhelmed —
and I learned, without anyone needing to say it,
that I was supposed to be the strong one.
The one who held it all together.
The one who translated her withdrawal into safety.
The one who learned to read her silence.
And now — standing there again, decades later — I saw the same look.
Of course I’ve been visiting her regularly — I live abroad.
And to be honest, that look… that atmosphere… it’s always been there.
Like a child.
Like a small, frightened dog.
Only now, it’s a disease.
Back then, it was just… life.
And something in me wanted to scream: Nothing has changed.
Everything is happening again.
The same emotional contract — just with a different name.
It’s like some part of me never really left that house.
Never really left that role.
Even though I’ve lived abroad for years.
Even though I’ve grown older.
Even though I’ve worked so hard to build a different life, to set boundaries, to make space…
There I was again — reading her face.
Absorbing her fear.
Absorbing the fear of others.
Trying to make it easier for her — and for me.
Part 3
There’s something no one really prepares you for.
Not in the books.
Not in the support groups.
Not in the polite conversations with relatives, friends, neighbours —
people who think they know what you’re going through…
what you should or shouldn’t feel. Or do.
And it’s this:
You can love someone deeply — and still want to walk away.
You can feel tenderness, grief, protectiveness —
and at the same time…
you can feel rage.
Exhaustion.
A kind of silent scream.
It’s confusing. And it’s hard to admit — even to myself.
Especially if the person you're caring for is your mother.
Because the stories we’re told — especially as daughters —
are stories about devotion. About being there.
About being selfless.
But here’s the trut
I was already there.
Long before Alzheimer’s came.
I was already the one holding her up.
The one who stayed awake. Watched the shadows.
Tried to make it safe.
Not just for her.
For everyone.
And that’s the part that’s hardest to say out loud:
This isn’t new.
The illness has changed the context — but not the role.
I was expected to protect her.
And sometimes, I still feel like I’m protecting her from the world…
and from herself.
And in some moments —
when I’m exhausted,
when that old tightness rises in my chest,
when her helplessness mirrors exactly what I grew up with —
I feel this pulse of anger.
At the whole situation.
At how it never really ended.
The anger Not always at her.
But sometimes… maybe, yes.
At the part of her that never found a way out.
That couldn’t fight for herself.
That didn’t protect herself — didn’t protect me.
And I know — maybe she didn’t have the strength.
Maybe she just… couldn’t.
But still — that anger lives in me.
Quiet. Shameful. True.
And then the guilt comes. Right after.
Because how can you feel anger toward someone who is slipping away?
Who needs you?
Who maybe never even had the chance to grow strong herself?
But the thing is — these emotions live together.
They don’t cancel each other out.
They layer.
They exist side by side — like different shades of the same truth.
You can love someone.
And still feel done.
And still feel loyal.
And still want to run.
All at once.
And maybe part of healing — maybe part of this whole language I’m trying to find —
is being able to speak that contradiction out loud.
Without shame.
Part 4
There was this one day during my visit when I decided to take her to the botanical garden.
I hoped it might connect us — not just because she used to study biology when she was young,
but also because of something I’ve learned through my own work:
that scent, touch, nature… they reach deeper than words.
When language begins to slip away — and it does — the body still knows.
The senses remember.
That day, we walked slowly through the garden, and she was happy.
Not just content — truly happy.
There was a lightness to her. Something childlike. Open.
And I remember watching her and thinking: This is her. This is still her.
At least very real glimpses of her…
And then something happened.
We were standing by a path,
her clinging to my hand with just two fingers —
like she needed some kind of anchor.
And she looked at me. Really looked.
Our eyes locked — and there was a kind of stillness. A clarity.
I hesitated. I remember that.
But then I asked her, quietly:
“Mom… do you know what’s happening to you?”
She paused.
Then she nodded — just a little — and said:
“Yes.”
And then she hugged me.
It’s strange — that moment was devastating.
And yet… also beautiful.
Because in the middle of all the forgetting,
this was a moment of knowing.
Of being together, in truth.
And maybe that’s what stays —
these moments when something in us recognizes the other.
But they don’t last, these moments
That’s part of the heartbreak, too:
you never know if you’ll ever get a moment like that again.
Part 5
What’s been hardest for me, in all of this,
goes beyond the illness itself.
I know — I keep circling back to this.
Because when I look at her now — the way she sits, or walks,
or stares at me with those uncertain eyes —
I don’t just see someone with Alzheimer’s.
I see someone I’ve known like this all my life.
Her helplessness now… is familiar.
That same posture. That same silence.
That way of shrinking into herself.
It’s how I remember her from my childhood.
Not just as a sick person now —
but as a woman who, even then, couldn’t protect herself.
A woman I was already trying to protect when I was still a child myself…
And that’s what tears me open.
Because now, she is a child in so many ways.
And yet — she always was.
And I always had to be the strong one.
The one who managed. Who soothed. Who guarded.
There’s a photo of her in my memory.
Not a real one — just this image that keeps returning.
She’s small, curled up like a child, eyes lowered, flinching —
like a dog that’s been hit too many times.
And it wrecks me.
Because that’s not just now. That was always there.
And it makes everything blur.
The past and the present get tangled.
And I feel like I’m stuck in a loop that never ended.
A role I was never allowed to outgrow.
A role that shouldn’t have been mine in the first place.
Part 6
There’s something I’ve been doing for a long time — without ever really talking about it.
Every now and then, I’d catch myself imagining how I might react if I got the news that my mother had died.
I’d play it out in my mind — the moment of hearing it, the stillness afterward,
where I’d be, what I’d do next.
I think now… that was my way of bracing.
Of trying to prepare for the blow.
Psychologically, maybe it’s a kind of emotional rehearsal —
a way to feel like you still have some sense of control
in a situation that is, by nature, uncontrollable.
Grief is so often tied to powerlessness.
And imagining it in advance gives you the illusion — just for a moment —
that maybe you’ll know how to cope when the time comes.
But again — nothing prepared me for this.
Because the loss didn’t come all at once.
It came in fragments.
And it’s still coming.
I think, in a way, I’ve always known this feeling.
Time passing.
Life dissolving.
Parts of me — and the people, the moments I care about — dissolving.
Like watching the tide take things away, grain by grain.
And you don’t even notice when the shoreline changed.
Or standing on a mountaintop, the peaks far away — clearly visible, never to be reached…
She’s still alive. I can still talk to her. Hold her hand.
And yet… part of her has already slipped beyond reach.
And maybe… maybe she was never fully reachable to begin with.
Maybe no one ever is.
Maybe that’s the most human thing —
to try again and again to reach someone,
never quite succeeding,
and still trying anyway.
A friend of mine put it into words lately: Abschied auf Raten —
a goodbye in stages.
That’s what it feels like.
A slow, stretched-out farewell.
One that keeps breaking your heart
in small, quiet ways.
And maybe that’s the hardest part —
not having one clear moment to grieve.
No sharp ending.
Just this long unravelling.
This ache of trying to hold on
while someone slowly disappears.
Part 7:
And still — even with all this slipping away — something stays.
It’s not the stories.
Not the facts or the timelines.
Those are scattered, gone,
or folded into some unreachable place.
But then… there’s touch.
The feeling of her hand in mine.
The warmth of it.
The way she sometimes squeezes back.
And there’s scent — this invisible but powerful language I’ve worked with for years.
She may not always find the words anymore, but she still responds to the smell of leaves, herbs, resin.
I saw it in her face — the softening, the trace of recognition.
It didn’t surprise me. But still… it moved me.
Because I’ve known this — that there’s a language beneath language.
One that lives in the body — in skin and breath and rhythm and scent.
A language that doesn’t rely on memory in the way we usually think of it.
It draws from somewhere deeper — body memory, sensory memory — the kind that doesn’t ask for words.
And maybe that’s what we forget
when we try too hard to talk to someone who’s slipping.
We push for clarity.
They search for the words.
We both get frustrated.
But maybe connection doesn’t always have to come through speech.
Maybe it can be rebuilt — slowly, quietly —
through touch, through scent, through stillness.
These things don’t ask for names.
They don’t explain themselves.
They just… stay.
And for now — I’m holding on to that moment.
That whole day in the garden.
As proof that something still speaks,
even when the words are gone.
Part 8
Somehow, I kept circling back to certain expressions in Polish —
ones that use the word okruchy…
breadcrumbs.
Okruchy pamięci. Okruchy dnia.
Breadcrumbs of memory.
Breadcrumbs of the day.
Just fragments, really —
but full of something small and weightless…
and still, meaningful.
A feeling. A presence.
What stays — even when so much has already slipped away.
And maybe that’s what these visits feel like, sometimes.
Like you’re gathering crumbs:
A hand held.
A scent that lingers.
A look that says yes — even if the words are gone.
The breadcrumbs of presence.
The remains that stay.
And maybe —
that’s where we’re able to meet.
To meet the other.
And in them… to meet ourselves.
Outro