The Hands That Hold the Forgotten | Stories from the Path by JBE Mindful Pathways
Stories from the Path | JBE Mindful Pathways
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There are no crowds cheering for the caregiver.
No medals for the hands that wipe tears from faces that no longer remember your name.
No applause when you sit beside someone in silence, simply because they’ve forgotten how to speak.
And yet, you stay.
Not because it’s easy.
Not because it always feels rewarding.
But because somewhere in the quiet ache of it all, love still lives—and so do you.
This is for the ones holding on when no one’s watching.
The mothers caring for children with special needs while battling their own chronic pain.
The daughters bathing the bodies of the very women who once bathed them.
The spouses who whisper “I love you” to someone who no longer knows who they are.
This is not just caregiving.
This is soul-keeping.
This is mourning someone who’s still breathing.
This is sacrificing pieces of yourself for someone who may never say thank you again.
But what happens when the caregiver isn’t just exhausted—
she’s also grieving?
What happens when the caregiver is the one with nerve pain, brain fog, or mental health challenges of her own—
and still she shows up for someone whose mind is slowly slipping away?
What happens when your day begins with reminders to take your own meds, but ends with guiding someone else to the bathroom, again, for the third time that night?
Caring for someone with dementia is a love story tangled in heartbreak.
It’s watching the light fade from someone’s eyes and pretending it doesn’t shatter you every time.
It’s relearning how to communicate through glances, gestures, or moments of silence.
It’s holding a hand that once held yours—and realizing they no longer know why.
And if you, too, are navigating this terrain while silently managing your own diagnoses, trauma, or limitations…
you’re not just a caregiver.
You’re a warrior in plain clothes.
And even if the world forgets to thank you, this space never will.
This story isn’t just about dementia.
It’s about the silent warriors who carry it all.
The ones who aren’t sure how much more they can take—but still keep taking one more breath, one more step, one more day.
If no one has said this to you lately:
We see you.
We honor you.
And this space is for you.
I. The Unseen Weight
They see the smile you force when you walk into the grocery store.
They hear the polite tone in your voice when they ask, “How’s your mom doing?”
They notice the way you always seem just a little tired, but they rarely ask why.
What they don’t see is the full day you’ve already lived—before the world even woke up.
They don’t see the 3 a.m. wake-up because she mistook the closet for the bathroom.
They don’t see you gently redirecting him for the fourth time this morning, convincing him that it is, in fact, 2025—not 1962.
They don’t hear the screaming, the sobbing, or the silence that follows when confusion turns to fear.
They don’t know what it feels like to watch the person who raised you ask you for your name.
Or the ache of spoon-feeding someone who once fed you.
They don’t see how much you’ve given up to stay—how much you continue to give, without applause or pay.
And for those who must work full-time jobs or raise children while caregiving?
The weight triples.
Many dementia caregivers live dual lives:
By day, they’re teachers, assistants, customer service reps, nurses.
By night, they are unpaid medical aides, grief managers, memory holders, and emotional anchors.
And when the hired help finally leaves—when the visiting nurse zips up her bag and walks out the door—
the second shift begins.
Dinner.
Bathing.
Redirecting.
Soothing.
Repeating.
Monitoring.
Crying quietly in the laundry room while the lasagna cools on the counter.
This is the part no one talks about.
According to the Alzheimer’s Association, more than 11 million Americans provide unpaid care for people with dementia.
And studies show that dementia caregivers are at higher risk for depression, anxiety, and even physical illness due to the sustained stress they carry daily.
Because this isn’t just physical labor—it’s emotional erosion.
It is grieving someone who is still alive.
It is answering the same question 27 times without flinching.
It is sacrificing your sleep, your social life, your sanity—because love demands it.
Because no one else will.
There are resources—support groups, respite care services, helplines, and educational programs—but many caregivers don’t know where to begin.
Or they feel guilty even asking for help.
But this must be said clearly:
You matter, too.
Your health, your rest, your emotional safety—they matter just as much as the one you’re caring for.
You are not invisible.
You are not alone.
You are not weak for being tired.
This—what you carry—is heavy.
And it is sacred.
But it was never meant to be carried in silence.
II. The Language of Forgetting
There’s a silence that settles in the room when your name no longer lives in the mouth of someone you love.
Not because they’re angry.
Not because they’ve chosen distance.
But because the disease has quietly erased you—letter by letter, memory by memory.
At first, it’s little things.
They ask the same question twice.
They call the remote the “telephone.”
They forget that lunch already happened.
You laugh it off with them, because what else can you do?
But over time, the forgetting grows teeth.
They forget the name of your child.
They forget that someone they love has passed away—and mourn them all over again.
They forget your birthday, your wedding day, the inside jokes that once stitched you together.
And then one day…
they forget you.
Not entirely.
Not always.
But enough that when they look into your eyes, there’s a flicker of confusion.
A pause that wasn’t there before.
A hesitance where home used to be.
And in that moment, a different kind of grief is born.
A grief that doesn’t wait for a funeral.
A grief that walks beside you, quietly, every single day.
Because when your loved one forgets your name, you don’t just lose a connection.
You lose history.
You lose stories.
You lose the version of yourself that only existed in their mind.
There are no rituals for this kind of loss.
No casseroles delivered.
No sympathy cards.
Only the ache of disappearing from someone’s world while they’re still right here in yours.
So you learn a new language—
one made of gentle tone, soft gestures, and redirection.
You learn to say “It’s okay” when they call you the wrong name.
You learn to smile when they tell the same story ten times in a row.
You learn that love sometimes means letting go of being known—just to keep being near.
And though it shatters you, you stay.
Because even if they forget you…
you will never forget them.
(Over 6 million Americans are currently living with Alzheimer’s disease—many in the earliest stages, where forgetfulness begins as a whisper before it becomes a storm.)
III. Passion vs. Burnout: A Double-Edged Calling
Some caregivers arrive with hearts already committed. A mother caring for her own aging mother. A daughter returning to her childhood home to walk her father through the fog of forgetting. A wife who vowed “in sickness and in health,” now helping the man who once danced her across the kitchen remember how to hold a spoon.
Others arrive by circumstance. Not by choice, but by need. Maybe they were the only sibling who lived nearby. Maybe no one else stepped up. Maybe it was cheaper than a facility. Maybe they simply couldn’t bear to let a stranger in.
But passion doesn’t make the weight any lighter. And duty doesn’t make it any less real.
In fact, studies show that between 40% and 70% of dementia caregivers experience significant symptoms of depression, according to the Family Caregiver Alliance. Many report intense guilt for feeling overwhelmed—especially those who chose this path with love. They wonder: Shouldn’t love be enough to sustain me?
And those who didn’t choose? They often carry shame. For being tired. For wanting a break. For counting the hours until someone else comes to take over. Even though their bodies ache, even though sleep is a stranger, they swallow that shame and keep going.
This is where the double-edged sword lives.
Caregiving, especially for someone with dementia, is not a job—it’s an all-encompassing existence. The line between caregiver and person disappears. You stop being daughter, partner, son, sister, friend. You become schedule manager. Medication coordinator. Bath-time negotiator. You speak for someone who can no longer find the words. You protect them from stoves, from strangers, from their own reflection. From a world they no longer understand.
And no one prepared you for this.
What we don’t talk about enough is that burnout can look like numbness. Not anger. Not resentment. Just quiet detachment. And this happens to both types of caregivers—the ones who showed up with open arms, and the ones who were thrown into it without a choice.
There’s this myth that passion protects you. But passion, without support, leads straight to the edge.
According to the Alzheimer’s Association, caregivers of dementia patients provide an average of 26 hours of care per week, often while balancing jobs, families, and their own health conditions. The emotional labor isn’t just invisible—it’s unmeasured.
And when burnout comes, it doesn’t knock. It seeps. Slowly. Until the caregiver who once sang lullabies to calm their loved one now stares blankly at the wall, wondering when they last took a breath for themselves.
This isn’t about blame. This is about breaking the silence.
Because every caregiver—whether fueled by love or duty—deserves support. Deserves rest. Deserves to be seen not just for what they do, but for who they are behind it all.
IV. The Body That Breaks and Still Holds
Not every caregiver walks in with strength in their limbs.
Some arrive carrying pill bottles of their own.
Wearing compression gloves.
Moving a little slower.
Masking chronic pain with practiced smiles.
Pausing to catch their breath—because even love requires oxygen.
These are the caregivers no one sees coming.
The ones who give while hurting.
Who lift others even as their own joints cry out.
Who soothe confusion while fighting their own brain fog.
They’re the mothers with autoimmune disorders, crouching down to tie shoes while their own backs throb.
The fathers with heart conditions, timing their meds between their wife’s appointments.
The daughters and sons with invisible illnesses—those whose pain doesn’t show up on scans—attending to their parents’ dementia through blurred vision and relentless fatigue.
No one writes songs about them.
There are no “strongest caregiver” awards.
Yet they show up.
Day after day.
Moment after breaking moment.
And we rarely ask: At what cost?
According to the National Alliance for Caregiving, 1 in 5 caregivers reports that their own health has suffered as a direct result of caregiving.
For those living with chronic illness or disability, the toll doubles. Physically. Mentally. Spiritually.
But they push through—not because they’re superhuman, but because they’ve already learned how to live with pain.
They’ve trained themselves to function under pressure.
To quiet their own suffering long enough to hold space for someone else’s.
Still, even the strongest bodies can break.
Even the most determined hearts need rest.
Even the ones who never complain deserve care.
And yet…
Society often praises them only for their strength.
Never for their exhaustion.
Never for their grief.
Never for the silent prayers whispered on nights when everything hurts and nothing stops.
We call them “warriors.” But they didn’t ask to go to battle.
They simply answered the call.
And now they fight on two fronts: their own body… and someone else’s decline.
This is where compassion must stretch further.
Where support must be louder.
Because these caregivers don’t need pity.
They need presence.
They need relief.
They need someone to ask, “How are YOU holding up?”—and wait long enough for the honest answer.
Because even bodies that break…
still hold.
But only for so long.
V. Caregiving in the Shadows of Motherhood
Not all caregivers clock in.
Some were never given the option to clock out.
Their shifts begin with 3 a.m. fevers and sensory meltdowns.
With paperwork battles and IEP meetings.
With explaining to teachers, doctors, and even family members that yes, this is real.
That no, they’re not just spoiled, or wild, or lazy.
This is neurodivergence.
This is autism.
This is ADHD.
This is the sacred work of loving a mind that moves to its own rhythm.
And often, this is done while the caregiver’s own body is screaming.
While their own diagnoses go ignored or untreated.
Because “mothers are strong.”
Because “you’re doing great.”
Because “they need you more.”
Motherhood has always been one of the most overlooked and undervalued forms of caregiving.
And too often, it’s expected to be done silently, selflessly, and without complaint.
But what about the mother who also has chronic illness?
The one who limps through laundry.
Who forgets what silence feels like.
Who smiles through her child’s therapy session while silently rescheduling her own.
What about the mother who’s never been able to nap when the baby naps—because the baby never naps?
Because sleep regressions turn into lifelong patterns.
Because overstimulation is a constant.
Because caregiving is not a season—it is her life.
According to the CDC, over 1 in 5 children in the U.S. has a diagnosed mental, emotional, or behavioral disorder.
Many of them are being raised by mothers who also struggle with invisible or visible disabilities of their own.
And yet there’s no manual for this.
No “sick day” policy.
No employee of the month recognition for the woman who gave up her career, her sleep, and sometimes her sanity—to simply keep going.
She advocates in doctor’s offices and whispers affirmations in bathroom stalls.
She Googles symptoms at midnight while managing her own flare-ups.
She signs up for support groups she never has time to attend.
She breaks down in the car… and wipes her tears before pulling into the school pickup line.
This is caregiving in the shadows.
Unpaid. Unseen. Unrelenting.
And too often, unspoken.
But here’s what’s true:
These mothers aren’t just caregivers.
They’re bridges between chaos and calm.
Translators between worlds.
Warriors whose battlefields look like living rooms, school forms, and endless appointments.
And while they may never receive medals, their children carry their resilience like heirlooms.
So to the ones raising children while managing bodies that ache and minds that bend but never break—
You are not failing.
You are not invisible.
You are the quiet revolution.
VI. Grieving While They’re Still Here
No one prepares you for the grief that comes before the funeral.
Not the kind where flowers line a casket or people bring casseroles to your door.
This is the silent grief. The slow burn. The ache that doesn’t have a name until you’re already drowning in it.
It’s called anticipatory grief—but that term barely scratches the surface.
Because what do you call it when your loved one is still alive…
but pieces of them are already gone?
You notice it in flashes.
In the way they look at you with confusion, even fear.
In how they forget your name—then forget their own.
In how their laughter disappears like dust from a bookshelf untouched too long.
You grieve their stories. Their wit.
The way they used to make your favorite soup or hum that tune under their breath.
You grieve the conversation you were supposed to have.
The apology you never got.
The advice they’ll never give your children.
And still—you feed them.
You help them shower.
You clean up the accidents.
You take deep breaths when they yell at you, accuse you of stealing, forget you are their daughter, their spouse, their sibling.
You smile gently when your heart is shattering.
Because someone has to keep it together.
Because love doesn’t walk away, even when it’s not returned in the way it once was.
According to the Alzheimer’s Association, over 6.9 million Americans live with Alzheimer’s disease, and nearly 75% of their care is provided by unpaid family members. That means millions are quietly mourning people who are still physically present—but slowly vanishing in every other way.
And it is one of the most complicated kinds of grief.
You can’t talk about it easily.
How do you explain mourning someone still breathing?
How do you admit that sometimes you long for the pain to be over—just so the fog of not-knowing can lift?
This kind of grief is isolating.
It doesn’t come with rituals or closure.
It arrives in waves at dinner tables, in quiet car rides, in the middle of folding laundry when a scent or song breaks you open.
But here’s what matters: Your grief is valid.
You’re not selfish for feeling it.
You’re not ungrateful for naming it.
And you’re not alone in carrying it.
There is strength in the tenderness you offer daily.
There is holiness in the quiet mourning you endure without recognition.
There is truth in how you hold a fading hand with the same love it once held you.
You are loving through loss.
And that is a kind of sacred most people will never understand.
VII. The Hands That Hold the Forgotten
There is a quiet kind of heroism in the hands that hold others… even as they themselves are unraveling.
These hands don’t make headlines.
They’re not thanked in speeches or awarded in ceremonies.
But they hold the weight of generations.
They feed the body that no longer remembers how to chew.
They steady the limbs that once built homes and held grandchildren.
They soothe the storms of confusion, rage, or terror that dementia brings, using nothing more than a soft voice and unwavering presence.
These are the hands that hold the forgotten.
But what we rarely speak about—what’s tucked behind the curtains of daily survival—is that these hands are often forgotten, too.
Caregivers fade in real time.
Their social lives evaporate. Their bank accounts shrink.
Their sleep is fractured, their health neglected, their identities blurred.
Some caregivers are so busy preserving another’s dignity, they lose pieces of their own.
Others are so used to showing up, they forget what it means to be asked, “But how are you really doing?”
And perhaps the hardest part is… no one usually does.
No check-ins. No follow-ups.
Just an unspoken assumption that they’ll keep holding on—because they always do.
They mourn in silence.
They ache in silence.
And too often, they break in silence.
It’s poetic, in a heartbreaking way—
That the people who hold the forgotten are often themselves invisible.
According to a 2022 AARP report, more than 36 million family caregivers in the U.S. provide unpaid care to adults with chronic or disabling conditions.
Many of them report moderate to high levels of emotional stress.
And yet, nearly 1 in 5 say they have no one to talk to about it.
No therapist.
No support group.
No relief.
But still—they show up.
They refill the prescriptions.
They track the doctor’s notes.
They clean the floors no one sees and soothe the fears no one hears.
Why?
Because somewhere beneath the exhaustion, beneath the grief, beneath the silent scream of “When is it my turn?”—
is a deep, unwavering love.
A love that doesn’t require recognition to continue.
This is the full circle of caregiving.
To hold someone as they fade… while no one holds you.
To give light… while burning at both ends.
To be the hands that hold the forgotten—
while praying you are not forgotten, too.
VIII. You Are Not Alone: A Soft Landing
If no one has told you lately—
You are not selfish.
You are not weak.
You are not failing.
You are navigating the impossible… with courage that doesn’t always look like bravery.
Maybe today you resented the weight of it all.
Maybe you snapped out of sheer exhaustion.
Maybe you cried in the bathroom after calmly explaining—for the fourth time—that yes, this is your house… and no, we don’t live in 1962 anymore.
Maybe you feel like you’re crumbling in slow motion.
Like no one sees how heavy it’s become.
Like you’ve disappeared inside of someone else’s needs.
But still, you stayed.
You fed them.
You tucked them in.
You reminded them of who they were… even when they couldn’t remember you.
And that matters.
It’s okay if you’re exhausted.
It’s okay if you feel numb, angry, or lost.
It’s okay if part of you is grieving a person who’s still alive.
What you’re doing is not easy, not simple, not small.
It’s sacred. It’s grueling. It’s human.
And it’s okay to need help.
There is a quiet army of others—just like you—whispering through the long nights, “You’re not the only one.”
They may be strangers, but they share the same ache. The same breathless moments. The same breaking… and the same rebuilding.
There are others walking this road beside you, even if you can’t see them yet.
And right now, even reading this—
Maybe you’re realizing: you were never really alone.
So let this be your exhale.
Your reminder.
Your truth.
You are not alone.
And you never were.
With grace, grit, and a love that refuses to quit.
Keep showing up—even when it feels like no one’s watching.
Your presence is powerful. Your love is building something they’ll one day thank you for.
From one caregiver to another—
With strength and softness,
~ Juju Divine Empress
Founder, JBE Mindful Pathways
Wellness Advocate | Writer | Mother | Still Learning, Always Loving
“Feel seen? You’re not alone. Explore more heartfelt reflections in the Stories from the Path collection—where real lives, real lessons, and real love leave a mark.”
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