June 12, 2025 • 13 mins
In this emotional installment of The Spectrum, we follow Karen Sadler as the weight of unrelenting caregiving catches up to her, physically, mentally, and emotionally. When she collapses in her kitchen from exhaustion, it becomes clear that caregiving without rest is not sustainable. This episode explores the hidden toll of caregiver burnout, the shame that keeps so many suffering in silence, and why planning for respite isn’t a luxury—it’s a lifeline.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome back to the Tells andExhales of Caregivers.
I'm your host, Beverly Nance andin this series titled The
Spectrum, we have been exploringthe unseen stories, the untold
struggles, and the moments ofquiet endurance that shape life
with autism.
If you're just joining us forthe first time, go back and
listen to.
(00:20):
Episodes one through five, andit'll kind of give you some
perspective on what we aretalking about.
The Martins and the Saddlers whoare neighbors, they are bound by
a diagnosis and divergence bothfamilies have sons with autism,
both born just weeks apart.
They live on the same street.
(00:41):
But while Sean Martin, hethrives with support as a high
functioning young adult GregSadler.
He lives on the profound end ofthe spectrum, requiring 24 hours
care, we have been exploringsnippets of each family's life
and what it's like to be on thehigher end of the spectrum and
the other end of the spectrum.
(01:01):
These families, like manyothers, are navigating a world
that rarely sees, let aloneunderstands what life looks like
after the school bus stopscoming during their school
years.
What happens after?
And now we are talking aboutsomething different.
This episode is for the ones whokeep going, even when their tank
is empty.
(01:22):
And this episode is titled,caregiving on Empty.
Because a lot of times we focuson the person needing the care,
but this episode focuses on theperson giving the care.
(02:06):
Karen Satler didn't notice thewarning signs right away.
They were easy to dismiss andoccasional headache, feeling
short of breath after climbingstairs.
The ways her hands wouldtremble.
When she tried to open amedicine bottle, she chalked it
all up to age, stress, maybeeven hormones.
But the truth was her body waswhispering.
(02:28):
What her mouth wouldn't say, I'mexhausted.
Like many caregivers, Karen worestrength like armor.
Her friends called herresilient.
Her church called her faithful.
The social worker called her anexceptional advocate.
But no one called her tired andshe was bone tired, soul tired.
(02:51):
Greg's care needs didn't pause.
They were, there were meds tomanage, behaviors to monitor
paperwork to complete, andalarms that sounded from her
inner clock, even in her sleep.
She hadn't slept through thenight in almost six years.
Daniel, her husband and Greg'sfather did what he could, but
(03:12):
his job meant long hours andunpredictable shifts.
Most days, Karen didn't resenthim, but on days when Greg
screamed for hours or refused toeat, when the house smelled of
bleach and burnt up spaghettiand the neighbor's dogs barked
without end on those days, shewished someone would just see
her.
(03:33):
The first scare came one eveningwhen she was stirring pasta and
felt the room tilt.
She grabbed the counter, thespoon, clattered to the floor.
Her heart pounded so loudly, itechoed in her ears.
She didn't tell anyone, not thatnight, because caregivers do
that.
Minimize delay, brush offbecause saying, I need help
(03:56):
feels like weakness And there'sno room for weakness when you're
responsible for someone whoneeds you all the time.
Karen's body had been warningher for weeks, but on a quiet
Tuesday morning, it stoppedwhispering, and started
shouting.
As she stood at the stovestirring Greg's oatmeal, the
(04:17):
edges of the room began to blur.
A sudden wave of nasea hit her.
Followed by the pounding in herears.
She gripped the counter, but herknees buckled the spoon,
clattered to the tile floor.
Just before she collapsed, herbody finally surrendered to the
years of ignored exhaustion.
Greg was in the other roomwatching his favorite cartoon
(04:38):
oblivious Daniel found herminutes later, still on the
floor.
Her breath shallow and her eyesclose.
It wasn't just fatigue, it was afull body reckoning, and it had
been building for years.
An ambulance was called, herblood pressure was dangerously
low.
The EMT said she was lucky.
Daniel found her and called 9 11 at the hospital.
(05:01):
Doctors asked if she had beenunder stress.
She laughed weakly, and then shecried.
Daniel rushed in, panicked.
Why didn't you say anything?
He asked.
She didn't have the wordsbecause she had said it in the
bags under her eyes.
The unwashed dishes, theuntouched books she used to
(05:24):
love.
She had whispered her pain insize and silence, but no one had
been listening, not evenherself.
When the nurse handed her herdischarge papers, it came with a
warning.
If you don't make changes, yourbody will make them for you.
When Karen came home, herneighbors who had witnessed her
(05:47):
leaving in the back of anambulance rallied at first meals
were dropped off, phone callswere made, and a local nonprofit
offered two days of respitecare, but two days wasn't
enough.
It barely scratched the surfaceof her sleep debt, let alone her
emotional backlog.
(06:07):
Respite sounds like a simplesolution.
Just take a break.
But for parents like Karen, it'snot that easy.
Greg isn't the kind of child youcan leave with a neighborhood
babysitter or drop off at afriend's home.
His needs are complex, hisbehaviors unpredictable, and his
care requires a level ofpatience and understanding.
That few possess.
(06:29):
Every time Karen consideredasking for help, she run through
the list of people in her lifeand come up empty.
Family lived far away.
Friends didn't understand.
The agencies had long waitinglists or staff who didn't stay
long, so she stayed because thefear of something going wrong
while she was away was worsethan the exhaustion she lived
(06:52):
with every day.
For many caregivers, the absenceof qualified, trustworthy help
makes respite feel like a luxuryinstead of a lifeline.
Karen struggled to accept help.
(07:12):
I.
The guilt was loud every minuteaway from Greg felt like
betrayal.
Could someone else handle hismeltdowns?
Would they be gentle with him ifhe lashed out?
What if something happened whileshe was gone?
Or what if she simply wanted tostay home and have him go out of
the house for respite?
(07:33):
That's the paradox of respite.
It's essential.
Yet caregivers often feel guiltyfor taking it.
Karen's doctor encouraged her tomake a respite plan.
But where do you even start whenyou spent 25 years putting your
child first, Karen didn't know,but her body did.
(07:53):
We often hear the phrase, youcan't pour from an empty cup.
I.
But what happens when there's nofaucet, no refill station?
What happens when the caregiverbecomes the crisis?
It sounds harsh, but it's thetruth.
Life will carry on if you diefrom exhaustion or stress.
The world won't pause.
Your child will still need care,and someone else, likely, less
(08:16):
prepared, and more overwhelmedwill have to step in.
That reality isn't meant toscare caregivers.
But to wake them up rest is notindulgence.
It's insurance, it's strategy,it's survival.
Caregivers must begin treatingrest the same way they treat
(08:36):
medication schedules, IEPmeetings or doctor's
appointments as non-negotiablebecause planning for respite is
planning for longevity.
Not just for the caregiver'slife, but for the quality of
care their loved ones receivesKaren and Daniel reached out to
a care coordinator.
They built a basic respite plan.
(08:57):
One evening off per week, aquarterly weekend, and scheduled
time for medical appointments.
Not for her son, but for her.
They added her name to a massagetherapist email list, and
arranged for a friend to takeher out once a month.
It felt awkward at first, likeshe was cheating, but it saved
her life.
(09:17):
She started journaling.
She bought herself a new coffeemug.
She even went back to singing inthe church choir.
Slowly, Karen rediscovered thather identity wasn't solely
Greg's mom.
She was Karen, woman, wife,writer, friend, and she was
allowed to matter too! Manycaregivers mask what chronic
(09:41):
stress has done to them.
The physical toll is obvious.
High blood pressure, migraines,autoimmune flareups.
But the emotional toll oftenremains hidden.
There's shame in admittingyou're not okay.
There's guilt in saying, I'mtired of this.
There's fear in asking whathappens if I break?
And yet the silence serves noone.
(10:03):
It isolates it.
Roads respite isn't a luxury,it's a survival strategy.
So how do we build a culturewhere caregivers feel safe
asking for help?
It starts with conversation withtelling the truth.
With sharing stories likeKaren's, it continues with
action.
(10:25):
Creating a respite plan may feeldaunting, but here's a simple
way to start assess your needs.
Physical, emotional, mental.
Where do you need support?
Set boundaries.
Identify time blocks you needdaily, weekly, quarterly.
List, trusted helpers, family,friends, professionals,
(10:48):
programs, have a backup plan.
Emergencies happen, build inflexibility and put it in
writing.
Even a simple checklist on thefridge helps everyone stay
aligned and most importantly,commit to using it because rest
isn't selfish.
It's sacred.
(11:15):
If you're listening to this andyou're a caregiver, I want you
to know you matter.
Not just the care you give you.
Visit take care time.com for aprintable respite planning
checklist.
Start small.
Start somewhere, but start.
For resources.
Consider your state's Departmentof Developmental Disabilities
(11:37):
caregiver action network.
The National Respite Network,and your local parent support
groups like our group onFacebook at Take Care Time,
caregiving Life.
This episode is brought to youby.
the take care time Respite box,a curated box for caregivers
(12:01):
filled with relaxing, thoughtfulitems that remind you to take a
breath.
From journals to candles,wearables to wellness treats.
The box says what caregiversrarely hear You Matter Too!
subscribetoday@takecaretime.com.
On our next episode of thisseries, the Spectrum, we speak
(12:23):
to someone who's spent his lifeloving someone with autism from
the other side of the siblingbond, my son, co-guardian of his
sister, and the biggestchampion, joins me to share his
journey, his struggles, and hishopes for the future.
It's the voice of a brother.
It's the story behind thesupport.
It's episode six of TheSpectrum.
(12:45):
Don't miss it.
Please note.
That this episode featuresreenactments and dramatized
details.
While in most cases the exactverbatim dialogue may not be
known, all dramatizations aregrounded in thorough research
and crafted to honor the storiesshared to respect the privacy
and confidentiality of theindividuals involved names, and
(13:05):
some identifying details havebeen changed.
Until next week, take care.
Welcome back to the Tells andExhales of Caregivers.
I'm your host, Beverly Nance andin this series titled The
Spectrum, we have been exploringthe unseen stories, the untold
struggles, and the moments ofquiet endurance that shape life
with autism.
If you're just joining us forthe first time, go back and
listen to.
(00:20):
Episodes one through five, andit'll kind of give you some
perspective on what we aretalking about.
The Martins and the Saddlers whoare neighbors, they are bound by
a diagnosis and divergence bothfamilies have sons with autism,
both born just weeks apart.
They live on the same street.
(00:41):
But while Sean Martin, hethrives with support as a high
functioning young adult GregSadler.
He lives on the profound end ofthe spectrum, requiring 24 hours
care, we have been exploringsnippets of each family's life
and what it's like to be on thehigher end of the spectrum and
the other end of the spectrum.
(01:01):
These families, like manyothers, are navigating a world
that rarely sees, let aloneunderstands what life looks like
after the school bus stopscoming during their school
years.
What happens after?
And now we are talking aboutsomething different.
This episode is for the ones whokeep going, even when their tank
is empty.
(01:22):
And this episode is titled,caregiving on Empty.
Because a lot of times we focuson the person needing the care,
but this episode focuses on theperson giving the care.
(02:06):
Karen Satler didn't notice thewarning signs right away.
They were easy to dismiss andoccasional headache, feeling
short of breath after climbingstairs.
The ways her hands wouldtremble.
When she tried to open amedicine bottle, she chalked it
all up to age, stress, maybeeven hormones.
But the truth was her body waswhispering.
(02:28):
What her mouth wouldn't say, I'mexhausted.
Like many caregivers, Karen worestrength like armor.
Her friends called herresilient.
Her church called her faithful.
The social worker called her anexceptional advocate.
But no one called her tired andshe was bone tired, soul tired.
(02:51):
Greg's care needs didn't pause.
They were, there were meds tomanage, behaviors to monitor
paperwork to complete, andalarms that sounded from her
inner clock, even in her sleep.
She hadn't slept through thenight in almost six years.
Daniel, her husband and Greg'sfather did what he could, but
(03:12):
his job meant long hours andunpredictable shifts.
Most days, Karen didn't resenthim, but on days when Greg
screamed for hours or refused toeat, when the house smelled of
bleach and burnt up spaghettiand the neighbor's dogs barked
without end on those days, shewished someone would just see
her.
(03:33):
The first scare came one eveningwhen she was stirring pasta and
felt the room tilt.
She grabbed the counter, thespoon, clattered to the floor.
Her heart pounded so loudly, itechoed in her ears.
She didn't tell anyone, not thatnight, because caregivers do
that.
Minimize delay, brush offbecause saying, I need help
(03:56):
feels like weakness And there'sno room for weakness when you're
responsible for someone whoneeds you all the time.
Karen's body had been warningher for weeks, but on a quiet
Tuesday morning, it stoppedwhispering, and started
shouting.
As she stood at the stovestirring Greg's oatmeal, the
(04:17):
edges of the room began to blur.
A sudden wave of nasea hit her.
Followed by the pounding in herears.
She gripped the counter, but herknees buckled the spoon,
clattered to the tile floor.
Just before she collapsed, herbody finally surrendered to the
years of ignored exhaustion.
Greg was in the other roomwatching his favorite cartoon
(04:38):
oblivious Daniel found herminutes later, still on the
floor.
Her breath shallow and her eyesclose.
It wasn't just fatigue, it was afull body reckoning, and it had
been building for years.
An ambulance was called, herblood pressure was dangerously
low.
The EMT said she was lucky.
Daniel found her and called 9 11 at the hospital.
(05:01):
Doctors asked if she had beenunder stress.
She laughed weakly, and then shecried.
Daniel rushed in, panicked.
Why didn't you say anything?
He asked.
She didn't have the wordsbecause she had said it in the
bags under her eyes.
The unwashed dishes, theuntouched books she used to
(05:24):
love.
She had whispered her pain insize and silence, but no one had
been listening, not evenherself.
When the nurse handed her herdischarge papers, it came with a
warning.
If you don't make changes, yourbody will make them for you.
When Karen came home, herneighbors who had witnessed her
(05:47):
leaving in the back of anambulance rallied at first meals
were dropped off, phone callswere made, and a local nonprofit
offered two days of respitecare, but two days wasn't
enough.
It barely scratched the surfaceof her sleep debt, let alone her
emotional backlog.
(06:07):
Respite sounds like a simplesolution.
Just take a break.
But for parents like Karen, it'snot that easy.
Greg isn't the kind of child youcan leave with a neighborhood
babysitter or drop off at afriend's home.
His needs are complex, hisbehaviors unpredictable, and his
care requires a level ofpatience and understanding.
That few possess.
(06:29):
Every time Karen consideredasking for help, she run through
the list of people in her lifeand come up empty.
Family lived far away.
Friends didn't understand.
The agencies had long waitinglists or staff who didn't stay
long, so she stayed because thefear of something going wrong
while she was away was worsethan the exhaustion she lived
(06:52):
with every day.
For many caregivers, the absenceof qualified, trustworthy help
makes respite feel like a luxuryinstead of a lifeline.
Karen struggled to accept help.
(07:12):
I.
The guilt was loud every minuteaway from Greg felt like
betrayal.
Could someone else handle hismeltdowns?
Would they be gentle with him ifhe lashed out?
What if something happened whileshe was gone?
Or what if she simply wanted tostay home and have him go out of
the house for respite?
(07:33):
That's the paradox of respite.
It's essential.
Yet caregivers often feel guiltyfor taking it.
Karen's doctor encouraged her tomake a respite plan.
But where do you even start whenyou spent 25 years putting your
child first, Karen didn't know,but her body did.
(07:53):
We often hear the phrase, youcan't pour from an empty cup.
I.
But what happens when there's nofaucet, no refill station?
What happens when the caregiverbecomes the crisis?
It sounds harsh, but it's thetruth.
Life will carry on if you diefrom exhaustion or stress.
The world won't pause.
Your child will still need care,and someone else, likely, less
(08:16):
prepared, and more overwhelmedwill have to step in.
That reality isn't meant toscare caregivers.
But to wake them up rest is notindulgence.
It's insurance, it's strategy,it's survival.
Caregivers must begin treatingrest the same way they treat
(08:36):
medication schedules, IEPmeetings or doctor's
appointments as non-negotiablebecause planning for respite is
planning for longevity.
Not just for the caregiver'slife, but for the quality of
care their loved ones receivesKaren and Daniel reached out to
a care coordinator.
They built a basic respite plan.
(08:57):
One evening off per week, aquarterly weekend, and scheduled
time for medical appointments.
Not for her son, but for her.
They added her name to a massagetherapist email list, and
arranged for a friend to takeher out once a month.
It felt awkward at first, likeshe was cheating, but it saved
her life.
(09:17):
She started journaling.
She bought herself a new coffeemug.
She even went back to singing inthe church choir.
Slowly, Karen rediscovered thather identity wasn't solely
Greg's mom.
She was Karen, woman, wife,writer, friend, and she was
allowed to matter too! Manycaregivers mask what chronic
(09:41):
stress has done to them.
The physical toll is obvious.
High blood pressure, migraines,autoimmune flareups.
But the emotional toll oftenremains hidden.
There's shame in admittingyou're not okay.
There's guilt in saying, I'mtired of this.
There's fear in asking whathappens if I break?
And yet the silence serves noone.
(10:03):
It isolates it.
Roads respite isn't a luxury,it's a survival strategy.
So how do we build a culturewhere caregivers feel safe
asking for help?
It starts with conversation withtelling the truth.
With sharing stories likeKaren's, it continues with
action.
(10:25):
Creating a respite plan may feeldaunting, but here's a simple
way to start assess your needs.
Physical, emotional, mental.
Where do you need support?
Set boundaries.
Identify time blocks you needdaily, weekly, quarterly.
List, trusted helpers, family,friends, professionals,
(10:48):
programs, have a backup plan.
Emergencies happen, build inflexibility and put it in
writing.
Even a simple checklist on thefridge helps everyone stay
aligned and most importantly,commit to using it because rest
isn't selfish.
It's sacred.
(11:15):
If you're listening to this andyou're a caregiver, I want you
to know you matter.
Not just the care you give you.
Visit take care time.com for aprintable respite planning
checklist.
Start small.
Start somewhere, but start.
For resources.
Consider your state's Departmentof Developmental Disabilities
(11:37):
caregiver action network.
The National Respite Network,and your local parent support
groups like our group onFacebook at Take Care Time,
caregiving Life.
This episode is brought to youby.
the take care time Respite box,a curated box for caregivers
(12:01):
filled with relaxing, thoughtfulitems that remind you to take a
breath.
From journals to candles,wearables to wellness treats.
The box says what caregiversrarely hear You Matter Too!
subscribetoday@takecaretime.com.
On our next episode of thisseries, the Spectrum, we speak
(12:23):
to someone who's spent his lifeloving someone with autism from
the other side of the siblingbond, my son, co-guardian of his
sister, and the biggestchampion, joins me to share his
journey, his struggles, and hishopes for the future.
It's the voice of a brother.
It's the story behind thesupport.
It's episode six of TheSpectrum.
(12:45):
Don't miss it.
Please note.
That this episode featuresreenactments and dramatized
details.
While in most cases the exactverbatim dialogue may not be
known, all dramatizations aregrounded in thorough research
and crafted to honor the storiesshared to respect the privacy
and confidentiality of theindividuals involved names, and
(13:05):
some identifying details havebeen changed.
Until next week, take care.
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