We Are Both Getting Lost… So We Hold Their Hand and Remember for Them

We went out for pizza that day.

Just a simple moment.

We tried to play dominoes—no one really knowing how—but for a moment it didn’t matter. There was laughter. Connection, Togetherness.

And then something shifted.

The game changed.

Or maybe… it didn’t change—but it no longer made sense.

Instead of playing, he started building.

Then knocking them down.

Then frustration.

Not just frustration…

but the quiet awareness that something wasn’t right.

Shifting to something that uses less brain activity.

-Eyes shifted to the Television "I love hockey!"

That’s the part people don’t always see.

Not just the forgetting—

but the knowing.

The awareness that something feels off… even if it can’t be explained.

As dementia—like Alzheimer's disease—progresses, words begin to fade. Conversations shorten. A paragraph becomes a sentence.

This is where we are now, and it's hard...

But something else often remains.

The ability to feel.

To sense tone.

To read emotion.

To pick up on what isn’t being said.

Even when the words are gone…

the awareness isn’t always.

A caregiver might hear something like:

“I’m not sure what was wrong today… but something felt off.”

And it stops you.

Because it’s true.

Not in a clinical way.

Not in a measurable way.

But in a human way.

They may not follow the conversation…

but in some ways—

they feel more.

And that changes something.

Maybe the role is not to bring them back to what they’ve lost.

Maybe the role is to meet them exactly where they are.

So caregivers sit beside them.

Hold their hand.

Connecting spirits.

We teach our children who they are through our words.

We tell them they’re strong, brave, kind, and capable—over and over again until they believe it.

But we rarely think to do the same for those losing themselves.

Some might say, “They won’t remember anyway.”

But research shows something different.

Even when memory fades, the brain still holds on to emotion, rhythm, and familiarity. Research in dementia care shows that emotional and musical memory are often preserved longer than factual recall, which is why tone, repetition, and familiar words still bring comfort and connection.

They may not remember what you said…

But they remember how it made them feel.

So we begin again.

We keep it simple.

“You’re safe.”

“I’m right here.”

“You’re okay.”

“You’re a good dad.”

“You’re a good husband.”

“You did a good job.”

“You are loved.”

“You matter.”

And sometimes, that’s enough.

Because when memory fades, identity doesn’t disappear…

It just needs to be gently spoken back into place.

But here’s the part that hits the hardest—

Somewhere along the way…

you lose who you are.

And so do they.

We talk about their loss all the time—

their memory, their language, their independence.

But we don’t talk enough about the caregiver’s loss.

The shift.

From son/daughter to caregiver.

From best friend/partner to protector.

From living the best life together… to managing one.

And then the question comes:

“Who am I now?”

And if we’re honest…

sometimes the answer comes with a grimace.

A quiet tension carried in the face.

An edge in the tone that wasn’t there before.

Not resentment toward them—never them—

but toward the hand of cards that’s been dealt.

The kind no one prepares you for.

The kind you didn’t choose.

The kind you can’t fix… only learn to live inside of.

And that part—

that unspoken part—

is where so many caregivers sit.

Because caregiving changes you.

It shows up in the exhaustion you don’t always say out loud.

In the weight you carry. In the quiet grief of losing pieces of your life while still living it.

And yet—

the person you’re caring for is asking the same question.

Not with words.

Not in therapy.

But in hesitation…in frustration…in that deep internal sense that something isn’t right.

“Who am I?”

The difference?

Caregivers are told what to do with that question.

Go to therapy.

Take breaks.

Try Yoga,

Do Meditation,

Practice self-care.

Stay connected.

Find yourself again.

There is research supporting this—caregivers who build in intentional rest, emotional support, and identity-preserving activities experience lower burnout and less depression. Structured respite, support groups, and even small moments that belong only to you matter.

But here’s where it becomes painfully clear—

They don’t get that option.

They can’t process it.

They can’t rebuild it.

They can’t “work on themselves.”

So while both are losing parts of who they are…only one is being taught how to find their way back.

It sure changes the meaning of Ohana.

Because Ohana isn’t just about belonging—it’s about staying, even when the path becomes unfamiliar for all of us.

Which means this truth becomes essential:

Learning to care for yourself is part of caring for them.

Not surface-level self-care.

But real care.

Stepping away without guilt.

Letting someone else step in.

Doing something that reminds you—

you still exist outside of this role.

Because if you don’t…

you both get lost.

And yet—even in all of this—

there is something often overlooked.

Faith.

Because when identity fades…

when memory shifts…

when both caregiver and loved one are asking “Who am I?”

He reminds me, There is still a God who knows.

There is still truth that does not change

even when memory does.

There is still identity not dependent on recall, roles,

or function.

And sometimes—

the most powerful thing a caregiver can do

is sit beside them, hold their hand…

and pray.

Not perfectly.

Not with the right words.

Just honestly.

“God, remind them who they are.”

“God, hold what we can’t hold anymore.”

“God, give strength for both of us.”

Because where therapy teaches processing—

faith holds what cannot be processed.

Where self-care creates space to breathe—

prayer creates a place to rest.

A caregiver may need a day at the spa.

A walk.

A quiet moment where no one needs anything.

And maybe their loved one’s version is simpler—

Sitting in the sun.

Holding a hand.

Listening to music.

Hearing familiar scripture.

Feeling safe without needing to understand why.

Different forms—

same need.

Rest.

Relief.

Being held.

Because at the end of the day—

it isn’t just one person being lost.

It’s both.

But neither are gone.

Not completely.

Not to each other.

And not to God.

And sometimes—

finding your way back doesn’t begin with remembering.

It begins with being reminded—

you were never forgotten.

Sending love and gratitude for all you do!