April 17, 2024 • 39 mins
Listen as Erin Antroinen, founder and CEO of NextGen Caregivers LLC shares her journey into caregiving that was sparked when she simultaneously cared for her fatherJeff battling cancer and her mother Sue facing dementia and Parkinson’s. Erin is your guide to a personalized caregiving approach, recognizing that each caregiver’s story is unique. She looks to support caregivers at every stage, from newbies seeking logistics and stress management tips to seasoned caregivers looking for somatic awareness and emotional support, and those wanting to thrive on their caregiving journey. Erin believes that caregiving, though demanding, offers incredible opportunities for personal growth and fulfillment. IG link https://www.instagram.com/nextgencaregivers/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Mandy (00:06):
Hello and welcome back to the Grief Trails podcast.
I'm your host Amanda Kernighanfrom Remembergrams, a small
business dedicated to helpingyou support those in your life
experiencing grief.
I hope you'll consider sendingsomeone a personalized card or
grief support box.
Shipping within the U.
S.
is always free and we treat eachorder with special care, paying
(00:27):
attention to every detail.
Today on the podcast, we haveErin Antronian, creator and CEO
of NextGen Caregivers, where sheis a guide to others on the
caregiving journey, recognizingeveryone's experience is unique
while helping to offerlogistical support, stress
management tips, somaticawareness, emotional support,
(00:48):
and anything needed to helpsupport others through the
demanding experience ofcaregiving that Erin believes
offers some incredibleopportunities for personal
growth and fulfillment.
Of course, like anyone else, shewas not a born expert in
caregiving.
Erin found herself in theposition of caregiver for her
father as he passed away fromcancer, and immediately after
(01:10):
for her mother who faced bothdementia and Parkinson's
disease.
This is Erin's story.
Erin (01:16):
Oh gosh.
Life before caregiving and loss.
Hmm.
It's been such a long journeyand it just feels like it's a
never ending journey.
You know prior to all of this,my parents were both super
active in my life.
My mom was actually my manager.
I had a direct sales businessfor 17 years and she was my
(01:40):
office manager.
She worked in my office with mefull time.
And.
My dad was like my biggestcheerleader, you know, he would,
anything that needed to be done,like if I needed something
cooked, if I needed somethingcleaned, if I needed my tires
fixed, you know, I was, I'msingle.
And my parents, we always jokedthat they're, they're my
significant other until, I get ahusband, I love that.
(02:02):
Yeah.
Yeah, really.
And I'm, I was so grateful thatlike, I had that type of
relationship with my parentsbecause I know not everybody is
lucky to have that sort ofrelationship.
And I, and to be honest, itwasn't always like that, you
know, there were some thingsthat happened in my parents
marriage that, cause somedivision in our family.
And we worked really hard to getback on good footing and had
(02:25):
many conversations of healingand forgiveness and all of that
stuff.
And my dad was diagnosed withcancer though, in 20.
12.
And it was a adenoma carcinoma.
It basically he ended up losinghis eye.
It kept coming back in the sameplace over and over and over
again.
And he just kept beating it likeliterally he would beat it.
(02:48):
And then five months later, he'dgo in for a scan and it come
back and it just bounced backand forth between his eyes and
his lymph nodes in his neck likeit didn't go anywhere else.
It just stayed right in thosetwo places and they just always
caught it early enough.
And and it was a lot like everyfall me and my mom were in the
hospital dealing with one of hissurgeries and the, just, you
(03:08):
know, Never ending.
And probably 2018 ish, 2017,2018.
My mom started showing signs ofmental cognition things, you
know, like having a hard timecommunicating, like asking lots
of questions, my sister livedwith her at the time.
And with.
She'd go to target and she wouldcall her 20 times in the 30
(03:31):
minutes that she was gonebecause she would either forget
that she asked or she just wasanxious or, you know, whatever
the thing was.
And long story short, we endedup getting my mom's frontal
temporal lobe dementia andParkinson's diagnosis the same
week that my dad came home onhospice in 2020.
Yeah, we were the middle and in
Mandy (03:52):
2020 is Covid in the
Erin (03:54):
middle of the pandemic.
Yeah.
So it was like a triple whammy.
My dad ended up going to thehospital.
We thought he just had the flu.
Then he ended up having a braininfection.
So I, I will spare you guys themedical details, but basically
he was leaking spinal fluid outof his nose.
So.
What comes out can also go in.
So he had a nice old braininfection in his brain.
(04:17):
And so they basically pluggedhim up, plugged up the hole in
his brain and sent him home andwe had three weeks with him on
hospice.
It was really beautiful.
Like it was the best and theworst times.
I have stories for days of thebest and worst things that can
happen when someone's dying.
But it was just really beautifulto have that time with our
family but it was really hard.
(04:38):
Like, I remember being on thephone with one of my friends
when my dad was on his way home,we had just gotten my mom's
diagnosis going like, I don'teven know how to do this.
Both of my parents, like my dadis his death is eminent.
And now it's just a matter oftime before our mom is going to
be in the same boat.
(04:58):
And even now, I don't even thinkthat I can process that type of
information.
It's just a lot.
It's a lot for any family toendure in the middle of a
pandemic where you can have nocontact with people like no, you
know, there's a lot.
And you have One sibling ormore?
Okay.
Yeah.
It's just me and my sister.
I'm the oldest.
(05:18):
So we're about 21 months apart.
Mandy (05:21):
I mean, in a way, it's good that you had each other to
experience this together.
I don't know what that, I knowall sibling dynamics are
different but was that a supportto you to have a sibling being
there kind of going through theexact same thing as you or was
that more difficult?
Erin (05:37):
It was definitely helpful.
We're just two different peopleas most siblings are.
Right.
Like there's very dramaticdifferences, especially when
there's two, it's like, one isalways complete opposite.
So, you know, from how theyhandle things to how they
process things, to how they do.
So she brought the laughter andthe fun and all of that stuff,
which was really appreciative.
(05:58):
Cause I can be more type a,let's get it done.
you know, let's accomplishsomething.
So, it was good.
Mandy (06:05):
So was your mom able, at this point this was new in her
diagnosis, so she was stillcognizant of losing her husband
and going through the grief ofall of that with you.
Is that right?
Erin (06:18):
She was and she wasn't.
So with frontal temporal lobe,it attacks the frontal lobe.
And so all of that is likeexecutive functioning, like your
reasoning, your emotion.
So she didn't really have anyemotions.
By the time all of this startedhappening, she was very, she had
inappropriate emotions atinappropriate times.
(06:39):
So like when my dad did die andit was finally real, I read his
obituary and I like broke downcrying.
She laughed at me because shedidn't understand and in that
moment I was like, I know she'snot laughing at me.
It's the disease that's laughingat me.
And it's not even like a that'swhat she's doing.
It's like, everything ismisfiring in her brain.
(07:02):
And so it's just the appropriateemotion is not coming out.
And so, it didn't feel goodstill, but at least I was aware
enough of her disease that Icould intellectualize that it's
not her doing that.
Mandy (07:19):
Right.
Though when you're grieving,intellectualizing and
understanding the logic behindthings is not always easy.
Erin (07:27):
No, and it's definitely a coping mechanism, right?
It's definitely like a way toprotect yourself from the pain,
you know, I think it definitelywas a place.
I think there's definitelythings that I'm still dealing
with because I intellectualizedthem and made it okay because
that's, you know, what dementiasays that is normal.
(07:47):
And so I made it normal.
Mandy (07:49):
Did you know much about dementia and your mom's specific
type of dementia before herdiagnosis or were you learning
right alongside you know, yourmom and your sister at the time
of diagnosis?
Erin (08:00):
Definitely learning right alongside, like I had known some
people, it's not somethingthat's prevalent in our family.
So it it's also something that'snewly talked about, right?
It's not something that 10, 20years that people were talking
about a lot.
It's like now all of a suddenthere's more research, there's
more, you know, back in the day,they just like put you in the
loony bin.
I say that tongue in cheek, butlike, cause they didn't know,
(08:24):
They didn't know how to processit.
They didn't have a diagnosis forit.
It's something that's, that'sbeen in the last 20 to 30 years
that they have researched for.
So definitely learning along theway with everything, which was,
you know, Really hard becausenervous system diseases like
Parkinson's and any form ofdementias, they're all moving
targets, right?
(08:44):
Like they, they only show youcertain symptoms at certain
times and doctors can do theirbest to get a best diagnosis.
But it's like, it's thisconstant ebb and flow of okay,
this is what it looks liketoday.
And then three months from nowit looks like a completely
different type of dementiabecause she's presenting
different.
symptoms.
(09:05):
And, and it's this like constantgrieving the loss of, Your mom,
like for me, it was my mom.
I know other people experiencedthis with different people, but
it's, you know, like one day shecan eat on her own and the next
day I'm feeding her, you know,one day she's going to the
bathroom by herself.
And the next day I'm having towipe her and put diapers on her.
(09:28):
You know, it's that rolereversal that all of a sudden
you're now becoming the parentto your parents.
Mandy (09:35):
And it's such compounded grief from having just at the
same time lost your dad and hisexperience being so different,
right?
You know,
Erin (09:45):
having a
Mandy (09:46):
pretty short period where he was on hospice, you knew it
was coming compared to thisdiagnosis and not really having
a clear timeline or knowing whatall of that's going to look
like.
Right.
How do you think that impactedyour experience grieving your
dad?
Do you feel like you waited todo some of your grief work
(10:06):
around losing your dad until youwere able to process what was
happening with your mom?
Erin (10:12):
I actually don't even think I grieved my dad until my
mom died this year.
So my mom just passed in Marchof 2023.
And I feel like.
Father's Day this year was thefirst time that I was like, my
dad's gone, because I was sobusy taking care of her and
making sure that she was okay.
And it was just yeah, I thinkthat there was just a part of me
(10:36):
that just, Mentallycompartmentalized his death and
just kind of put it over here onthe side and I intellectually
could say to people like I knowwhen my mom dies, this is going
to this is going to hit me hard,like for both of their deaths.
And, you know, I wasn't lying.
Mandy (10:54):
Intellectually, you're very smart.
You knew exactly what was goingto happen.
I wear my trauma well.
So your mom's decline and herillness, were you living with
her?
Did your sister stay living withher?
How did that look for the two ofyou?
Did you have to take turns?
Erin (11:11):
Yeah.
So my sister so she has a sonwho's now 15 at the time he was
12, 13.
And so he had lived with ourparents since he was a baby.
And when dad declined like hehad been sick for, you know,
eight years, but that rapiddecline, like he was considered
to be in remission when he gotsick again.
And then that's when he camehome on hospice.
(11:32):
So it was Not totally surprised,but also we were not expecting
that.
And so we were all there when hepassed together, my nephew was
and all of that stuff.
And so we just made a collectivedecision that the two of them
didn't need to be there, as ourmom declined and my sister
didn't really have the bandwidthto.
To do that and do everything forhim.
(11:54):
So so I moved home to help takecare of my mom and stepped in
immediately, like literally dadpassed in the middle of COVID
and then stepped in to take careof her.
And yeah, and we moved in theretoo.
Like we moved homes, it wasn'tour childhood home, but we had
grown, lived there for Like 20years.
So we had to move out of therecause my mom had to fall.
(12:16):
She like fell down the stairs.
So literally dad died.
A month later, mom fell, brokeher back.
Luckily the hospital let me stayin the hospital with her.
And then came home from that.
It was just a fracture.
And then she came home, fellagain, got a brain bleed.
And it was literally fightingtooth and nail to get her the
treatment that she needed,because I couldn't be in the
(12:38):
hospital with her, like theywere having me send her into
emergency rooms by herself.
And like.
You want to talk abouttraumatizing like I couldn't
even I had to leave her at thedoor.
They would not let me go in.
I'm like, she cannot advocatefor herself.
She does not sit still.
She will touch everything.
I know you do not have thepersonnel that is going to sit
(13:00):
with her.
Like, I know.
And you're asking for moretrouble than it's worth.
it will just be easier if I'mable to be there with her.
And.
Wouldn't do it.
So they sent her they sent herhome from a hospital in DC.
And I ended up having to takeher back because they told me
that she was back to herbaseline.
She was not, she could barelywalk up the stairs.
(13:21):
She could barely move.
Well, before she fell, she wasdoing like a mile a day.
We would break it up throughoutthe day and do like a quarter of
a mile at a time.
And so I had to take her back inthrough the emergency room for
them to readmit her, for them toget her to a skilled nursing
facility to get the care thatshe needed.
And I literally had to drop heroff at the ER and sit outside
(13:41):
waiting to find out if they weregoing to admit her all day long.
I felt like I was dropping mychild off at.
A hospital and waiting for themto, like, take care of them and
this child cannot speak forthemselves.
They can't do anything forthemselves.
Mandy (13:55):
The coven experience when you put it with these, like,
medical.
Situations that people are goingthrough when you put it through,
like the grief that people aregoing through.
I mean, it was, it's such a massand I impacted people.
I think in ways we're not goingto know for years down the road.
I know our hospital.
I work in the hospital.
(14:16):
That's my day job.
And yeah, the restrictions oneven how many people can be in a
room.
Who are on the hospice unit,like saying goodbye to somebody
who's dying.
There are restrictions withthat.
There were, like you said, atthe emergency room, dropping
people off who have dementia,who have different cognitive
issues.
And I remember there were peoplestanding outside the windows
(14:39):
trying to like watch and makesure their loved one was safe.
And.
It, yeah, I, I think then youadd in the fact of grieving or
losing someone during this timeperiod when isolation is a lot
higher and one of the biggesthelps in grief is finding
connection and, and leaning onothers for support.
(15:00):
So how was that for you?
Did you find that COVID madethings more complex for you
being able to move through yourown grief in different ways with
friends and the support offamily and others?
Erin (15:14):
Yeah, definitely.
Yeah, we, it's funny, Well, sogoing back to the hospital, my
dad, we thought he, we didn'teven think he was going to come
home.
Like we went to the hospital topull him off the vent at the
hospital and I had to fight.
They were just trying to send mymom in by herself or send me in
or my sister.
And then I was like, no, no, no.
My mom has dementia and sheneeds both of me and my sister.
(15:36):
So luckily we were able to getboth of us in there.
But, you know, he was uptalking, like everything was
fine, like an hour later.
So it's, you know, he's, he's,he's been pulled off vents like
12 times in his life.
It just is the amount of timesI'm like, you are a cat with
dementia.
15 lives.
So but yeah, it was reallychallenging.
Luckily I had a group at thetime I worked for my church at
(15:58):
the time.
And so we all kind of were doingonline church stuff together.
And so we were kind of in aquarantine bubble or whatever
they called it back then.
I don't even remember.
So luckily I had some.
Of those types of people.
And also I was super protectiveof my mom because she was such a
high risk population witheverything that she was going
(16:19):
through.
I mean, she was healthy as africking cow, outside of her
dementia.
It was insane to me.
Just how everything happened.
But so it was a lot of onlinegroups, support prayer, you
know, I actually hired a somaticbreathwork coach that impacted
me is that, which actually I'mnow in the process of getting my
practitioner certificationbecause it was so impactful to
(16:42):
me to learn how to move stressand trauma out of the body and
all of that stuff.
So just a lot of virtual help,but.
It was really being willing tonot be afraid to ask for help I
think was one of the biggestthings.
And I think that because lifewas so overwhelming with the
changes and also Prior to myparents getting sick, I had a
(17:06):
black mold incident, which tookme out like I couldn't drive for
a year yet.
It's my life.
It's, it's been a little crazy.
So I grieved all of that.
Like, that's a whole nothergrief process of like grieving
my life, all of that.
And So I, I surrendered in a lotof ways that prepared me to care
for my mom that I don't thinkthat I would have been as
(17:28):
prepared had that not havehappened.
Like I can sit in gratitude nowfor that.
I wasn't grateful for it for avery long time.
It's very angry.
Mandy (17:37):
Yeah, that's natural though.
I mean, that's something thathappens with any kind of grief
that we go through in life.
So we are often angry and peopleare uncomfortable with feeling
anger because it's not always asocially accepted emotion.
But.
Erin (17:52):
Yeah, nobody teaches you how to be angry properly, you
know, like that's one of thethings with somatics is it
teaches you how no emotions aregood or bad.
They just are, you know, andreally like really allowing
yourself whatever emotions arecoming up, allowing yourself to
feel those, whether it'sscreaming, breaking something
it's better out than in.
And so making sure that you'reprocessing that.
Mandy (18:15):
Yeah.
How did you learn about thatwork and how did you get
interested in, in trying toincorporate that into your life
during such a stressful time?
Erin (18:25):
So it actually came from a business coach that I was
working with.
One of their friends did thesomatic work.
And I.
Just started watching some ofher stuff on social media,
because, you know, that's whereall of us millennials find all
things relevant.
Right.
We don't watch the news.
We go to social media.
(18:46):
And so I started watching herstuff and it just was like, The
freedom to feel understandingthe pains in the body and how
they tie to emotions and I,again, intellectualizing thing.
This is my, constant traumaresponse, like if I can do
things.
(19:06):
To be in control.
this was my way of also tryingto feel like I was in control of
my grief process.
Like, if I'm doing the thingsand I'm doing the, you know, I
have all these things that I'mdoing, then, maybe I'll protect
myself or I'll, be able toprocess or whatever.
And so it just, It just, and itmade such an impact.
So I just stick stuck with it.
(19:27):
Cause it's, it's so much likeour brain is sending.
So our neurotransmitters andstuff in our body, like.
20 percent of our messages thatgo from our brain go to our
body, but 80 percent of themessages in our body go to our
brain.
And so much of we can't thinkour way out of a problem.
We, we have to feel our way.
(19:48):
so much of us are staying in ourbrain and trying to think our
way out of things.
And so I was, so it helped me toget out of my brain and get into
my body so that I was able tofeel the things that I was
avoiding feeling.
Mandy (20:00):
That's really interesting because I don't know much about
this.
I haven't ever done it myself,but I do find for me and my
grief, one of the biggest helpswas being out in nature, moving
my body, walking, hiking,running different ways that I
was physically moving werehelping me process things, even
(20:22):
if it wasn't at a consciouslevel.
You know, I think that's whatslowly moved me through the
process.
So it's really interesting tohear about that.
Erin (20:30):
Yeah.
Yeah.
I mean, it's, it's so it's soinnate, right?
Like, it's so, it's so innatefor us to want to move.
And when we're in a traumaresponse, like if you think
about an animal, when an animalis in a trauma response, they
freeze, they pretend likethey're dead.
And, And then when they, if youever watch an animal and they
go, they have a near deathexperience, they get up from
(20:51):
that near death experience andthey shake.
And what they're doing isthey're moving that trauma out
of their body.
So then they can resume life asnormal.
And so much of us just keepgoing and we don't stop long
enough to like shake it off orto get rid of it.
Or we just.
We hold on to it and we're like,okay, you come with me now
everywhere I go.
(21:12):
Yeah, that's accurate.
We're like, you live here now.
So we're just going to likestuff it all down as, as hard
and as long as possible.
Yes.
Mandy (21:24):
Oh, wow.
So, so your experience was aboutthree years of caregiving for
your mom.
What can you tell people aboutthe experience of being a
caregiver and what do you thinkpeople don't know or don't talk
about enough about thatexperience?
Erin (21:41):
That's such a good question.
Honestly, I think that there canbe joy in caregiving.
You can still have joy.
There's still life to be lived.
I think so often we get adiagnosis or a loved one does
and we all we see is this a lineof life and what's left or like
(22:02):
my mom was on hospitals for 14months and it was this constant
Is today the day?
Is today the day?
What about today?
No?
Okay, we're not, we're not dyingtoday.
Okay, cool.
Is it, is it tomorrow?
And so, and really separatingyour loved one from the disease,
they're not their disease.
I think so often we, whateverlabel that we're given anxiety,
(22:27):
panic attacks, Dementia, cancer,all of a sudden we wear it like
a badge.
Like I have cancer, I havedementia, I have this, recently
I just went through some testingand I have Epstein Barr virus,
like a chronic infection.
And so I'm wearing that.
I found myself wearing it.
Like, this is why I feel liketrash because this is what I
have.
And I'm like, Erin, stop it.
(22:47):
And so I actually named my mom'sdisease little B, little B,
because when she was acting outor she was behaving in a way
that was hurtful to me that werelike, if it was my mom behaving
that way, it would be hurtful tome.
And I had, To find a way toseparate her from the disease so
that I could still love and bepatient and be calm and find joy
(23:10):
with her and also find somethingto take my anger out on because
it wasn't her, you know, so Ithink that's a huge piece that
not a lot of people talk about.
And I think a lot of just thisnervous system safety stuff.
I think the finding.
Especially when you're caringfor a parent, that role reversal
(23:30):
causes a complete upheaval inyour nervous system and what's
normal.
Everything in your nervoussystem says, this is my parent
and I'm, they're supposed totake care of me and I'm supposed
to feel safe with them.
Even if you didn't have a goodrelationship with them, like
your nervous system still saysthat.
And when all of a sudden you're,you're reversing that role,
(23:50):
that's where angst and stressAnd all of that stuff comes
from.
And so if we can find a way tofind safety within ourselves,
within our nervous system, andthat doesn't come from like
massages and, you know, all ofthat stuff is great.
Do it 1000%.
And also there's self care, likegetting in nature, coming home
(24:11):
journaling, prayer, like thosethings that.
actually move the needle forwardand finding safety so that you
can experience joy andcaregiving because I really do
believe that it's there.
And I think that you're supposedto, because there's so much you
can learn in caregiving that youwould never experience if you
never got that season.
Mandy (24:32):
That's such powerful advice.
I imagine I've never been acaretaker to someone so I can't
speak from that experience, butI could imagine it would be easy
to lose yourself in that role,and to have your whole world be
focused on this.
This additional jobresponsibility of taking care of
this person and then sort oflosing yourself along the way
(24:54):
because it can be such a longjourney.
I did talk to another woman andshe Was a caregiver for her
husband, I believe for likeeight years,
Erin (25:04):
if I'm,
Mandy (25:04):
I hope I'm remembering that correctly, but a long time.
And that's a long time forpeople to feel like their lives
are a little bit on pause.
And so I applaud you for sayingthat, you need to find little
pockets of joy in thatexperience because we can't put
our lives on hold for that manyyears.
You know, you can't put asideyour own joy and your own
(25:25):
fulfillment for that long of aperiod.
So.
Erin (25:29):
That's
Mandy (25:30):
really powerful.
Erin (25:31):
Thank you.
Mandy (25:32):
Your mom passed away so recently in March.
So you're really new in the,Deep well of grief.
I think the first year is like alot of processing, a lot of
emotion and you're right, youmentioned the holidays were
coming up as we're recordingthis.
This is prior to Thanksgivingand Christmas.
And those are always reallydifficult the first year around,
(25:55):
which I know you went throughafter your dad died, but now
coming at it.
From an experience of losingboth your parents.
That too is something I wantedto ask about is, it's one thing
when we lose one of our parents.
I think parent loss is profoundfor everyone.
Obviously it depends on therelationship you have with the
parent, but losing both of yourparents is a different
(26:16):
experience.
Right.
Do you feel unmoored or have youhad that, that strange emotion
of like thinking about the factthat both of the people who
brought you into the world arenot here?
Erin (26:29):
Yes, it has rocked me to my core, like literally has
altered every fiber of my being.
Sometimes I sit here and I'mjust like, they're just at their
house, right?
It's just so weird, to thinkthat they're just not here
anymore.
And in my thirties, I justdidn't think like my dad's
parents lived well until theirnineties, you know, my mom's
(26:51):
into their eighties.
You know, I was like, for sure,we have another 40 years, you
know, 30 years, something likethat.
And yeah, it, it, it makes youquestion who you are, like who
you are, what you are, what youbelieve in, you know it's funny,
you know, I was telling agirlfriend the other day, I was
(27:12):
like, you know, I've been on myown since I was 18.
So I'm about to be 40.
So 20, 22 years, I've been on myown.
But yet there was just some sortof safety with my parents on
earth that is now not there.
And there's this belief that I'mworking through right now that
if I was married that it wouldbe easier.
(27:32):
And I don't think that that'strue.
Mandy (27:36):
I think it's hard whether you're married or not.
I was married when my mom diedand I don't think that that
makes it an easier experience.
I think it's just different, youknow, everyone has a different
time with it.
But.
You know, that makes me think Iremember prior to my mom's
passing.
So I was in my early twenties,but I was newly married and I
(27:57):
had a baby and a house.
And so by like all accounts, Iwas definitely an adult in
society standards.
And I remember someone asking agroup of students, when do you
become an adult?
And is it, is it when you turn18?
Is it when you get your driver'slicense?
Is it when you move out, whenyou go to college, when you
graduate college?
Is it when you get married?
(28:17):
And like, when do you feel likeyou're an adult?
And I remember at the time I waslike, Ooh, I don't feel like an
adult yet, even though I hadchecked all these boxes.
And when I lost my mom, it waslike, Oh, okay.
Now I feel like an adult becausethere is that lifeline there.
And you feel like, well, I canstill just call my mom and ask.
(28:38):
You know, get the advice and,and get the support that you
need.
And like you mentioned before,your dad will come over and, and
do all of the little things and,and now all of that is left to
you and it's, yeah, it's areally difficult transition or
shift in your own place in theworld, I think.
Erin (28:58):
Yeah.
Remembering how to cook certainthings, remembering how to do a
change in my air filter and myair conditioning, you know, just
little things you know, when wewere moving out of my mom's
house and we were going througheverything to sell things and
figure out what we wanted tokeep because she had like a 4000
square foot house that just had,Massive amounts of stuff.
(29:19):
And there's just so many thingsthat I wish that I had stories
from that, I just didn't eventhink to ask because I had never
seen the things or I won't evensay that I didn't care.
It's just that I wasn't matureenough to probably want to even
ask those questions.
Like, ask about her childhood.
Ask the stories of what happenedon the playground?
Were you a good student?
You know, just little thingsthat I wish I knew now that, you
(29:42):
know, I don't know that I'llever know.
Mandy (29:45):
I know.
I think so many of us have that.
Lots of stories.
I wish I knew, but the power ofhindsight,
Erin (29:53):
right?
But, you know, it makes us givesus the ability to move forward
and move differently in ourlife, you know?
Mandy (30:00):
So now being I think it's a little over six months since
I'm not great at math, but Ithink around there since your
mom died, six or seven,something like that.
What are you doing differentlyin your life since?
Since all of this has changed,you know, you lost your dad, you
took care of your mom for solong, and now you've lost your
mom.
Have you gotten to a point inyour life where things are, look
(30:23):
different and you envision adifferent future for yourself
than what you were doing priorto your dad getting sick?
Erin (30:31):
Yeah, I mean, I've completely changed my whole
career.
I'm now building a business forcaregivers to actually teach
them about the somatic piece andteaching them how to navigate
the stress that comes withcaregiving.
Of course, there's the logisticspiece that's in there that's
important because that givesspace for it.
But I think more than that, it'sthe stress that comes with it.
(30:54):
It's, Actually reallyinteresting because I'm in this
place of, so going intocaregiving, I, my nervous system
was not healthy.
And then being in caregiving,going through this grief, being
in a pandemic in the middle ofall of that with a cherry on
top, you know, being so isolatedfor years.
And I was isolated prior to thatwith my nervous system disorder
(31:15):
because I was like veryoverstimulated.
So I couldn't go places.
I couldn't go to stores.
I couldn't.
So I spent a lot of time priorto that on at home.
And so now I'm at the place ofreally learning how to feel
safe, even having fun, you know,because everything has felt
safe.
Protected and had such walls upfor so long for good reason,
(31:37):
with the pandemic and with allthe things, but like even
learning how to.
Be a human again, how tosocialize again, how to not feel
you know, I feel reallyoverwhelmed some days, you know,
with like so many adulting andthen business and this and this,
and I'm like, I'm frozen.
If one more person asks me onemore thing, I'm literally not
(32:00):
going to make it.
Like I have to go home and turnall the lights off and turn all
the sound off.
And no one talked to me.
Mandy (32:07):
Fair.
That sounds really nice.
I know moms everywhere
Erin (32:11):
are like, yeah, but it's just amazing how physical grief
is, you know, it's just such aphysical.
And so I'm just, right now I'mjust really being kind to my
body and I'm just, even when Ifeel like I could push through
and do more, like I'm takingextra time for rest and I'm
working to not shame myselfbecause I'm definitely a over
(32:33):
worker, you know, and Redefiningthat work is actually in the
rest and that's, that's actuallysome of the most productive time
that I could do.
And You know, there's timeswhere I go down scrolling on
social media and doing all ofthat stuff but really that's not
productive rest, you know, likeit's, it's not, it's still
(32:54):
mental stimulation that iscausing, all kinds of things
happening, but it's just it'slearning to be okay in this
silence that is It'schallenging, but it's so once
you get past all the noise andyou allow that to come like one
thing I do with my clients is Ihave them whenever they're
(33:14):
feeling really overwhelmed, justimagine your thoughts are like
clouds they're just passing bydon't grab onto it and like hold
on to it and like think throughall the things and you're
worried just let it go andeventually they'll slow down 30
minutes.
But they will stop eventuallyand then you get to this place
and then you never want toleave.
So because it's so peaceful.
Mandy (33:35):
Well, I love that because it's so counter American culture
and you know what society sortof expects is people to push
through it and stuff it down andnot focus on it.
So I think you're doing reallyimportant work and I love that
you're Giving back to thecaretaker community by offering
(33:55):
the support to others who are inthe position that you were in
recently and that you're beingkind to yourself in your grief.
That is my number one thing thatI tell people when they're
grieving is like, you just haveto really be kind to how you
talk to yourself, what youexpect of yourself, making sure
that you.
Honor those little hints of whatyou need in that moment and not
(34:18):
ignore them, but like reallylean into whatever that is.
So where, if people are curiousabout learning more about
caregiving and the services thatyou're providing, where could
they find you?
Erin (34:31):
Next gen caregivers on Instagram is the best place to
find me.
So thank you so much for sayingthat.
The only other thing that Iwould, add in was.
To you have to teach people howto grieve, how, how you grieve
and what you need in yourgrieving process.
Like we expect that, you know,the thing is, is like after the
(34:55):
major event of a death happens,you know, people are there
immediately, but then, you know,seven, 14 days goes by and
everybody goes back to theirregular life and like your life
does not change.
And in fact, it has changedcompletely, but yet.
You're still, you're just leftto pick up the pieces.
And so one thing that I havereally implemented is really
(35:16):
telling people what I need andasking for them to, and not
assuming that they will, and ifthey don't, then that means that
they don't care.
And because it's not true.
You know, they're just in theirown world and like literally all
of us only see what we'repersonally going through and I'm
guilty of this even in my griefthat sometimes I don't even see
(35:36):
other people and there'ssometimes that that's okay,
right?
Sometimes we have to be selfishin our grief.
And also I think sometimes we,it's, it's, it's, it's, it's,
focusing on other people canhelp us get out of our grief.
And so whatever that looks likefor you, like for me, sometimes
it's like serving at church ordoing different things, like
helping a friend folder laundryor, you know, and so like, just
(35:59):
not being afraid of if you needhelp with the laundry or you
know, or even just when you'rehaving a hard time teaching
people how to be with you inthat hard time, a lot of times
people like your grief, my griefmakes people feel uncomfortable.
You know, they want to stuff atissue in my face or they want
to like, don't cry, don't cry.
Your mom will be so sad if youwere sad and I'm like, no,
(36:21):
actually I'm allowed to cry.
Actually it's allowed to suck.
And actually I can also.
Be happy in five minutes fromnow.
Like, both can exist.
Like, it doesn't have to bethis, like, terrible thing.
You know, even though it isterrible, but just not being
afraid to, feel those griefemotions when they come up and
when they make peopleuncomfortable.
Unfortunately, I have to teachthem how to sit with me in those
(36:43):
emotions, which sucks because Idon't want to teach you when I'm
grieving.
Mandy (36:48):
Right, and some people I don't think know how to teach
others.
I think in that experience youcan be so overwhelmed with what
you're going through that yourreaction is anger when people
say things that areinvalidating.
That's such a good
Erin (37:03):
point.
Mandy (37:04):
You know, I, that was like my number one thing that I
hated that people would say isshe wouldn't want you to be sad.
I mean, it would just make me somad because that is not helpful.
And if roles were reversed, shewould be sad too.
If I were to die, you know, likeyou can't tell someone that they
(37:25):
can't be sad because the otherperson wouldn't want them to be
sad.
It's just such a silly thing.
To give us advice, but it comesup a lot.
So I think it's such a greatreminder to remind people that
like, if you can just take thatextra beat, take an extra minute
to evaluate, you know, theirintention was good, but that it
wasn't helpful in being able toexplain to them, you know, that
(37:49):
it.
That's not what I need rightnow.
And yeah, I give you a lot ofcredit.
You're like so in tune with youremotions and reactions and
everything.
I think it's a struggle for alot of people.
Erin (38:01):
That's, you know, it's so thank you for saying that
because I think sometimes I,because I've been doing this
work for so long that I feellike like I, it's not that I
don't feel those things.
It's just not my, I've beendoing this work for so long that
my automatic response is pause,think through, like, educate,
you know, but I, but it wasn'talways like that.
(38:23):
Let me be very clear.
It was not always like that.
But a lot of things happenedbefore this season of my life
that enabled me when I wentthrough this season to be in
that place.
So yeah, I had to, I had to tellsomebody just the other day,
like they started telling me thewhole, like, your mom wouldn't
want you to do this.
(38:43):
And I just basically had to tellher to stop talking and to hug
me.
Like I was just like, I justneed you to stop talking and
just give me a hug.
I'm not even going to try toexplain anything because even,
and it's, it's not their fault.
Right.
Like it, this is how societydeals with grief.
It's just, an American thing.
I don't even think it's a whole,like the world as a collective.
(39:03):
I think it's an American thing,but yeah, that's a topic for
another day.
But this was awesome.
So thank you for thisconversation.
Mandy (39:11):
I hope you enjoyed today's show and feel validated
in your own journey ofcaregiving.
If you or someone you know needssupport in that process, check
the show notes for Erin'scontact information.
For today's journal prompt,write about how you have found
joy in the most challengingperiod of your life.
Let the writing take you in anydirection it leads.
(39:31):
Thank you so much for listening.
Please make sure you subscribe,share this episode with anyone
who could benefit from it, andas always visit RememberGrams
anytime you need to send alittle love to someone who is
grieving.
Thank you and have a wonderfulday.
Hello and welcome back to the Grief Trails podcast.
I'm your host Amanda Kernighanfrom Remembergrams, a small
business dedicated to helpingyou support those in your life
experiencing grief.
I hope you'll consider sendingsomeone a personalized card or
grief support box.
Shipping within the U.
S.
is always free and we treat eachorder with special care, paying
(00:27):
attention to every detail.
Today on the podcast, we haveErin Antronian, creator and CEO
of NextGen Caregivers, where sheis a guide to others on the
caregiving journey, recognizingeveryone's experience is unique
while helping to offerlogistical support, stress
management tips, somaticawareness, emotional support,
(00:48):
and anything needed to helpsupport others through the
demanding experience ofcaregiving that Erin believes
offers some incredibleopportunities for personal
growth and fulfillment.
Of course, like anyone else, shewas not a born expert in
caregiving.
Erin found herself in theposition of caregiver for her
father as he passed away fromcancer, and immediately after
(01:10):
for her mother who faced bothdementia and Parkinson's
disease.
This is Erin's story.
Erin (01:16):
Oh gosh.
Life before caregiving and loss.
Hmm.
It's been such a long journeyand it just feels like it's a
never ending journey.
You know prior to all of this,my parents were both super
active in my life.
My mom was actually my manager.
I had a direct sales businessfor 17 years and she was my
(01:40):
office manager.
She worked in my office with mefull time.
And.
My dad was like my biggestcheerleader, you know, he would,
anything that needed to be done,like if I needed something
cooked, if I needed somethingcleaned, if I needed my tires
fixed, you know, I was, I'msingle.
And my parents, we always jokedthat they're, they're my
significant other until, I get ahusband, I love that.
(02:02):
Yeah.
Yeah, really.
And I'm, I was so grateful thatlike, I had that type of
relationship with my parentsbecause I know not everybody is
lucky to have that sort ofrelationship.
And I, and to be honest, itwasn't always like that, you
know, there were some thingsthat happened in my parents
marriage that, cause somedivision in our family.
And we worked really hard to getback on good footing and had
(02:25):
many conversations of healingand forgiveness and all of that
stuff.
And my dad was diagnosed withcancer though, in 20.
12.
And it was a adenoma carcinoma.
It basically he ended up losinghis eye.
It kept coming back in the sameplace over and over and over
again.
And he just kept beating it likeliterally he would beat it.
(02:48):
And then five months later, he'dgo in for a scan and it come
back and it just bounced backand forth between his eyes and
his lymph nodes in his neck likeit didn't go anywhere else.
It just stayed right in thosetwo places and they just always
caught it early enough.
And and it was a lot like everyfall me and my mom were in the
hospital dealing with one of hissurgeries and the, just, you
(03:08):
know, Never ending.
And probably 2018 ish, 2017,2018.
My mom started showing signs ofmental cognition things, you
know, like having a hard timecommunicating, like asking lots
of questions, my sister livedwith her at the time.
And with.
She'd go to target and she wouldcall her 20 times in the 30
(03:31):
minutes that she was gonebecause she would either forget
that she asked or she just wasanxious or, you know, whatever
the thing was.
And long story short, we endedup getting my mom's frontal
temporal lobe dementia andParkinson's diagnosis the same
week that my dad came home onhospice in 2020.
Yeah, we were the middle and in
Mandy (03:52):
2020 is Covid in the
Erin (03:54):
middle of the pandemic.
Yeah.
So it was like a triple whammy.
My dad ended up going to thehospital.
We thought he just had the flu.
Then he ended up having a braininfection.
So I, I will spare you guys themedical details, but basically
he was leaking spinal fluid outof his nose.
So.
What comes out can also go in.
So he had a nice old braininfection in his brain.
(04:17):
And so they basically pluggedhim up, plugged up the hole in
his brain and sent him home andwe had three weeks with him on
hospice.
It was really beautiful.
Like it was the best and theworst times.
I have stories for days of thebest and worst things that can
happen when someone's dying.
But it was just really beautifulto have that time with our
family but it was really hard.
(04:38):
Like, I remember being on thephone with one of my friends
when my dad was on his way home,we had just gotten my mom's
diagnosis going like, I don'teven know how to do this.
Both of my parents, like my dadis his death is eminent.
And now it's just a matter oftime before our mom is going to
be in the same boat.
(04:58):
And even now, I don't even thinkthat I can process that type of
information.
It's just a lot.
It's a lot for any family toendure in the middle of a
pandemic where you can have nocontact with people like no, you
know, there's a lot.
And you have One sibling ormore?
Okay.
Yeah.
It's just me and my sister.
I'm the oldest.
(05:18):
So we're about 21 months apart.
Mandy (05:21):
I mean, in a way, it's good that you had each other to
experience this together.
I don't know what that, I knowall sibling dynamics are
different but was that a supportto you to have a sibling being
there kind of going through theexact same thing as you or was
that more difficult?
Erin (05:37):
It was definitely helpful.
We're just two different peopleas most siblings are.
Right.
Like there's very dramaticdifferences, especially when
there's two, it's like, one isalways complete opposite.
So, you know, from how theyhandle things to how they
process things, to how they do.
So she brought the laughter andthe fun and all of that stuff,
which was really appreciative.
(05:58):
Cause I can be more type a,let's get it done.
you know, let's accomplishsomething.
So, it was good.
Mandy (06:05):
So was your mom able, at this point this was new in her
diagnosis, so she was stillcognizant of losing her husband
and going through the grief ofall of that with you.
Is that right?
Erin (06:18):
She was and she wasn't.
So with frontal temporal lobe,it attacks the frontal lobe.
And so all of that is likeexecutive functioning, like your
reasoning, your emotion.
So she didn't really have anyemotions.
By the time all of this startedhappening, she was very, she had
inappropriate emotions atinappropriate times.
(06:39):
So like when my dad did die andit was finally real, I read his
obituary and I like broke downcrying.
She laughed at me because shedidn't understand and in that
moment I was like, I know she'snot laughing at me.
It's the disease that's laughingat me.
And it's not even like a that'swhat she's doing.
It's like, everything ismisfiring in her brain.
(07:02):
And so it's just the appropriateemotion is not coming out.
And so, it didn't feel goodstill, but at least I was aware
enough of her disease that Icould intellectualize that it's
not her doing that.
Mandy (07:19):
Right.
Though when you're grieving,intellectualizing and
understanding the logic behindthings is not always easy.
Erin (07:27):
No, and it's definitely a coping mechanism, right?
It's definitely like a way toprotect yourself from the pain,
you know, I think it definitelywas a place.
I think there's definitelythings that I'm still dealing
with because I intellectualizedthem and made it okay because
that's, you know, what dementiasays that is normal.
(07:47):
And so I made it normal.
Mandy (07:49):
Did you know much about dementia and your mom's specific
type of dementia before herdiagnosis or were you learning
right alongside you know, yourmom and your sister at the time
of diagnosis?
Erin (08:00):
Definitely learning right alongside, like I had known some
people, it's not somethingthat's prevalent in our family.
So it it's also something that'snewly talked about, right?
It's not something that 10, 20years that people were talking
about a lot.
It's like now all of a suddenthere's more research, there's
more, you know, back in the day,they just like put you in the
loony bin.
I say that tongue in cheek, butlike, cause they didn't know,
(08:24):
They didn't know how to processit.
They didn't have a diagnosis forit.
It's something that's, that'sbeen in the last 20 to 30 years
that they have researched for.
So definitely learning along theway with everything, which was,
you know, Really hard becausenervous system diseases like
Parkinson's and any form ofdementias, they're all moving
targets, right?
(08:44):
Like they, they only show youcertain symptoms at certain
times and doctors can do theirbest to get a best diagnosis.
But it's like, it's thisconstant ebb and flow of okay,
this is what it looks liketoday.
And then three months from nowit looks like a completely
different type of dementiabecause she's presenting
different.
symptoms.
(09:05):
And, and it's this like constantgrieving the loss of, Your mom,
like for me, it was my mom.
I know other people experiencedthis with different people, but
it's, you know, like one day shecan eat on her own and the next
day I'm feeding her, you know,one day she's going to the
bathroom by herself.
And the next day I'm having towipe her and put diapers on her.
(09:28):
You know, it's that rolereversal that all of a sudden
you're now becoming the parentto your parents.
Mandy (09:35):
And it's such compounded grief from having just at the
same time lost your dad and hisexperience being so different,
right?
You know,
Erin (09:45):
having a
Mandy (09:46):
pretty short period where he was on hospice, you knew it
was coming compared to thisdiagnosis and not really having
a clear timeline or knowing whatall of that's going to look
like.
Right.
How do you think that impactedyour experience grieving your
dad?
Do you feel like you waited todo some of your grief work
(10:06):
around losing your dad until youwere able to process what was
happening with your mom?
Erin (10:12):
I actually don't even think I grieved my dad until my
mom died this year.
So my mom just passed in Marchof 2023.
And I feel like.
Father's Day this year was thefirst time that I was like, my
dad's gone, because I was sobusy taking care of her and
making sure that she was okay.
And it was just yeah, I thinkthat there was just a part of me
(10:36):
that just, Mentallycompartmentalized his death and
just kind of put it over here onthe side and I intellectually
could say to people like I knowwhen my mom dies, this is going
to this is going to hit me hard,like for both of their deaths.
And, you know, I wasn't lying.
Mandy (10:54):
Intellectually, you're very smart.
You knew exactly what was goingto happen.
I wear my trauma well.
So your mom's decline and herillness, were you living with
her?
Did your sister stay living withher?
How did that look for the two ofyou?
Did you have to take turns?
Erin (11:11):
Yeah.
So my sister so she has a sonwho's now 15 at the time he was
12, 13.
And so he had lived with ourparents since he was a baby.
And when dad declined like hehad been sick for, you know,
eight years, but that rapiddecline, like he was considered
to be in remission when he gotsick again.
And then that's when he camehome on hospice.
(11:32):
So it was Not totally surprised,but also we were not expecting
that.
And so we were all there when hepassed together, my nephew was
and all of that stuff.
And so we just made a collectivedecision that the two of them
didn't need to be there, as ourmom declined and my sister
didn't really have the bandwidthto.
To do that and do everything forhim.
(11:54):
So so I moved home to help takecare of my mom and stepped in
immediately, like literally dadpassed in the middle of COVID
and then stepped in to take careof her.
And yeah, and we moved in theretoo.
Like we moved homes, it wasn'tour childhood home, but we had
grown, lived there for Like 20years.
So we had to move out of therecause my mom had to fall.
(12:16):
She like fell down the stairs.
So literally dad died.
A month later, mom fell, brokeher back.
Luckily the hospital let me stayin the hospital with her.
And then came home from that.
It was just a fracture.
And then she came home, fellagain, got a brain bleed.
And it was literally fightingtooth and nail to get her the
treatment that she needed,because I couldn't be in the
(12:38):
hospital with her, like theywere having me send her into
emergency rooms by herself.
And like.
You want to talk abouttraumatizing like I couldn't
even I had to leave her at thedoor.
They would not let me go in.
I'm like, she cannot advocatefor herself.
She does not sit still.
She will touch everything.
I know you do not have thepersonnel that is going to sit
(13:00):
with her.
Like, I know.
And you're asking for moretrouble than it's worth.
it will just be easier if I'mable to be there with her.
And.
Wouldn't do it.
So they sent her they sent herhome from a hospital in DC.
And I ended up having to takeher back because they told me
that she was back to herbaseline.
She was not, she could barelywalk up the stairs.
(13:21):
She could barely move.
Well, before she fell, she wasdoing like a mile a day.
We would break it up throughoutthe day and do like a quarter of
a mile at a time.
And so I had to take her back inthrough the emergency room for
them to readmit her, for them toget her to a skilled nursing
facility to get the care thatshe needed.
And I literally had to drop heroff at the ER and sit outside
(13:41):
waiting to find out if they weregoing to admit her all day long.
I felt like I was dropping mychild off at.
A hospital and waiting for themto, like, take care of them and
this child cannot speak forthemselves.
They can't do anything forthemselves.
Mandy (13:55):
The coven experience when you put it with these, like,
medical.
Situations that people are goingthrough when you put it through,
like the grief that people aregoing through.
I mean, it was, it's such a massand I impacted people.
I think in ways we're not goingto know for years down the road.
I know our hospital.
I work in the hospital.
(14:16):
That's my day job.
And yeah, the restrictions oneven how many people can be in a
room.
Who are on the hospice unit,like saying goodbye to somebody
who's dying.
There are restrictions withthat.
There were, like you said, atthe emergency room, dropping
people off who have dementia,who have different cognitive
issues.
And I remember there were peoplestanding outside the windows
(14:39):
trying to like watch and makesure their loved one was safe.
And.
It, yeah, I, I think then youadd in the fact of grieving or
losing someone during this timeperiod when isolation is a lot
higher and one of the biggesthelps in grief is finding
connection and, and leaning onothers for support.
(15:00):
So how was that for you?
Did you find that COVID madethings more complex for you
being able to move through yourown grief in different ways with
friends and the support offamily and others?
Erin (15:14):
Yeah, definitely.
Yeah, we, it's funny, Well, sogoing back to the hospital, my
dad, we thought he, we didn'teven think he was going to come
home.
Like we went to the hospital topull him off the vent at the
hospital and I had to fight.
They were just trying to send mymom in by herself or send me in
or my sister.
And then I was like, no, no, no.
My mom has dementia and sheneeds both of me and my sister.
(15:36):
So luckily we were able to getboth of us in there.
But, you know, he was uptalking, like everything was
fine, like an hour later.
So it's, you know, he's, he's,he's been pulled off vents like
12 times in his life.
It just is the amount of timesI'm like, you are a cat with
dementia.
15 lives.
So but yeah, it was reallychallenging.
Luckily I had a group at thetime I worked for my church at
(15:58):
the time.
And so we all kind of were doingonline church stuff together.
And so we were kind of in aquarantine bubble or whatever
they called it back then.
I don't even remember.
So luckily I had some.
Of those types of people.
And also I was super protectiveof my mom because she was such a
high risk population witheverything that she was going
(16:19):
through.
I mean, she was healthy as africking cow, outside of her
dementia.
It was insane to me.
Just how everything happened.
But so it was a lot of onlinegroups, support prayer, you
know, I actually hired a somaticbreathwork coach that impacted
me is that, which actually I'mnow in the process of getting my
practitioner certificationbecause it was so impactful to
(16:42):
me to learn how to move stressand trauma out of the body and
all of that stuff.
So just a lot of virtual help,but.
It was really being willing tonot be afraid to ask for help I
think was one of the biggestthings.
And I think that because lifewas so overwhelming with the
changes and also Prior to myparents getting sick, I had a
(17:06):
black mold incident, which tookme out like I couldn't drive for
a year yet.
It's my life.
It's, it's been a little crazy.
So I grieved all of that.
Like, that's a whole nothergrief process of like grieving
my life, all of that.
And So I, I surrendered in a lotof ways that prepared me to care
for my mom that I don't thinkthat I would have been as
(17:28):
prepared had that not havehappened.
Like I can sit in gratitude nowfor that.
I wasn't grateful for it for avery long time.
It's very angry.
Mandy (17:37):
Yeah, that's natural though.
I mean, that's something thathappens with any kind of grief
that we go through in life.
So we are often angry and peopleare uncomfortable with feeling
anger because it's not always asocially accepted emotion.
But.
Erin (17:52):
Yeah, nobody teaches you how to be angry properly, you
know, like that's one of thethings with somatics is it
teaches you how no emotions aregood or bad.
They just are, you know, andreally like really allowing
yourself whatever emotions arecoming up, allowing yourself to
feel those, whether it'sscreaming, breaking something
it's better out than in.
And so making sure that you'reprocessing that.
Mandy (18:15):
Yeah.
How did you learn about thatwork and how did you get
interested in, in trying toincorporate that into your life
during such a stressful time?
Erin (18:25):
So it actually came from a business coach that I was
working with.
One of their friends did thesomatic work.
And I.
Just started watching some ofher stuff on social media,
because, you know, that's whereall of us millennials find all
things relevant.
Right.
We don't watch the news.
We go to social media.
(18:46):
And so I started watching herstuff and it just was like, The
freedom to feel understandingthe pains in the body and how
they tie to emotions and I,again, intellectualizing thing.
This is my, constant traumaresponse, like if I can do
things.
(19:06):
To be in control.
this was my way of also tryingto feel like I was in control of
my grief process.
Like, if I'm doing the thingsand I'm doing the, you know, I
have all these things that I'mdoing, then, maybe I'll protect
myself or I'll, be able toprocess or whatever.
And so it just, It just, and itmade such an impact.
So I just stick stuck with it.
(19:27):
Cause it's, it's so much likeour brain is sending.
So our neurotransmitters andstuff in our body, like.
20 percent of our messages thatgo from our brain go to our
body, but 80 percent of themessages in our body go to our
brain.
And so much of we can't thinkour way out of a problem.
We, we have to feel our way.
(19:48):
so much of us are staying in ourbrain and trying to think our
way out of things.
And so I was, so it helped me toget out of my brain and get into
my body so that I was able tofeel the things that I was
avoiding feeling.
Mandy (20:00):
That's really interesting because I don't know much about
this.
I haven't ever done it myself,but I do find for me and my
grief, one of the biggest helpswas being out in nature, moving
my body, walking, hiking,running different ways that I
was physically moving werehelping me process things, even
(20:22):
if it wasn't at a consciouslevel.
You know, I think that's whatslowly moved me through the
process.
So it's really interesting tohear about that.
Erin (20:30):
Yeah.
Yeah.
I mean, it's, it's so it's soinnate, right?
Like, it's so, it's so innatefor us to want to move.
And when we're in a traumaresponse, like if you think
about an animal, when an animalis in a trauma response, they
freeze, they pretend likethey're dead.
And, And then when they, if youever watch an animal and they
go, they have a near deathexperience, they get up from
(20:51):
that near death experience andthey shake.
And what they're doing isthey're moving that trauma out
of their body.
So then they can resume life asnormal.
And so much of us just keepgoing and we don't stop long
enough to like shake it off orto get rid of it.
Or we just.
We hold on to it and we're like,okay, you come with me now
everywhere I go.
(21:12):
Yeah, that's accurate.
We're like, you live here now.
So we're just going to likestuff it all down as, as hard
and as long as possible.
Yes.
Mandy (21:24):
Oh, wow.
So, so your experience was aboutthree years of caregiving for
your mom.
What can you tell people aboutthe experience of being a
caregiver and what do you thinkpeople don't know or don't talk
about enough about thatexperience?
Erin (21:41):
That's such a good question.
Honestly, I think that there canbe joy in caregiving.
You can still have joy.
There's still life to be lived.
I think so often we get adiagnosis or a loved one does
and we all we see is this a lineof life and what's left or like
(22:02):
my mom was on hospitals for 14months and it was this constant
Is today the day?
Is today the day?
What about today?
No?
Okay, we're not, we're not dyingtoday.
Okay, cool.
Is it, is it tomorrow?
And so, and really separatingyour loved one from the disease,
they're not their disease.
I think so often we, whateverlabel that we're given anxiety,
(22:27):
panic attacks, Dementia, cancer,all of a sudden we wear it like
a badge.
Like I have cancer, I havedementia, I have this, recently
I just went through some testingand I have Epstein Barr virus,
like a chronic infection.
And so I'm wearing that.
I found myself wearing it.
Like, this is why I feel liketrash because this is what I
have.
And I'm like, Erin, stop it.
(22:47):
And so I actually named my mom'sdisease little B, little B,
because when she was acting outor she was behaving in a way
that was hurtful to me that werelike, if it was my mom behaving
that way, it would be hurtful tome.
And I had, To find a way toseparate her from the disease so
that I could still love and bepatient and be calm and find joy
(23:10):
with her and also find somethingto take my anger out on because
it wasn't her, you know, so Ithink that's a huge piece that
not a lot of people talk about.
And I think a lot of just thisnervous system safety stuff.
I think the finding.
Especially when you're caringfor a parent, that role reversal
(23:30):
causes a complete upheaval inyour nervous system and what's
normal.
Everything in your nervoussystem says, this is my parent
and I'm, they're supposed totake care of me and I'm supposed
to feel safe with them.
Even if you didn't have a goodrelationship with them, like
your nervous system still saysthat.
And when all of a sudden you're,you're reversing that role,
(23:50):
that's where angst and stressAnd all of that stuff comes
from.
And so if we can find a way tofind safety within ourselves,
within our nervous system, andthat doesn't come from like
massages and, you know, all ofthat stuff is great.
Do it 1000%.
And also there's self care, likegetting in nature, coming home
(24:11):
journaling, prayer, like thosethings that.
actually move the needle forwardand finding safety so that you
can experience joy andcaregiving because I really do
believe that it's there.
And I think that you're supposedto, because there's so much you
can learn in caregiving that youwould never experience if you
never got that season.
Mandy (24:32):
That's such powerful advice.
I imagine I've never been acaretaker to someone so I can't
speak from that experience, butI could imagine it would be easy
to lose yourself in that role,and to have your whole world be
focused on this.
This additional jobresponsibility of taking care of
this person and then sort oflosing yourself along the way
(24:54):
because it can be such a longjourney.
I did talk to another woman andshe Was a caregiver for her
husband, I believe for likeeight years,
Erin (25:04):
if I'm,
Mandy (25:04):
I hope I'm remembering that correctly, but a long time.
And that's a long time forpeople to feel like their lives
are a little bit on pause.
And so I applaud you for sayingthat, you need to find little
pockets of joy in thatexperience because we can't put
our lives on hold for that manyyears.
You know, you can't put asideyour own joy and your own
(25:25):
fulfillment for that long of aperiod.
So.
Erin (25:29):
That's
Mandy (25:30):
really powerful.
Erin (25:31):
Thank you.
Mandy (25:32):
Your mom passed away so recently in March.
So you're really new in the,Deep well of grief.
I think the first year is like alot of processing, a lot of
emotion and you're right, youmentioned the holidays were
coming up as we're recordingthis.
This is prior to Thanksgivingand Christmas.
And those are always reallydifficult the first year around,
(25:55):
which I know you went throughafter your dad died, but now
coming at it.
From an experience of losingboth your parents.
That too is something I wantedto ask about is, it's one thing
when we lose one of our parents.
I think parent loss is profoundfor everyone.
Obviously it depends on therelationship you have with the
parent, but losing both of yourparents is a different
(26:16):
experience.
Right.
Do you feel unmoored or have youhad that, that strange emotion
of like thinking about the factthat both of the people who
brought you into the world arenot here?
Erin (26:29):
Yes, it has rocked me to my core, like literally has
altered every fiber of my being.
Sometimes I sit here and I'mjust like, they're just at their
house, right?
It's just so weird, to thinkthat they're just not here
anymore.
And in my thirties, I justdidn't think like my dad's
parents lived well until theirnineties, you know, my mom's
(26:51):
into their eighties.
You know, I was like, for sure,we have another 40 years, you
know, 30 years, something likethat.
And yeah, it, it, it makes youquestion who you are, like who
you are, what you are, what youbelieve in, you know it's funny,
you know, I was telling agirlfriend the other day, I was
(27:12):
like, you know, I've been on myown since I was 18.
So I'm about to be 40.
So 20, 22 years, I've been on myown.
But yet there was just some sortof safety with my parents on
earth that is now not there.
And there's this belief that I'mworking through right now that
if I was married that it wouldbe easier.
(27:32):
And I don't think that that'strue.
Mandy (27:36):
I think it's hard whether you're married or not.
I was married when my mom diedand I don't think that that
makes it an easier experience.
I think it's just different, youknow, everyone has a different
time with it.
But.
You know, that makes me think Iremember prior to my mom's
passing.
So I was in my early twenties,but I was newly married and I
(27:57):
had a baby and a house.
And so by like all accounts, Iwas definitely an adult in
society standards.
And I remember someone asking agroup of students, when do you
become an adult?
And is it, is it when you turn18?
Is it when you get your driver'slicense?
Is it when you move out, whenyou go to college, when you
graduate college?
Is it when you get married?
(28:17):
And like, when do you feel likeyou're an adult?
And I remember at the time I waslike, Ooh, I don't feel like an
adult yet, even though I hadchecked all these boxes.
And when I lost my mom, it waslike, Oh, okay.
Now I feel like an adult becausethere is that lifeline there.
And you feel like, well, I canstill just call my mom and ask.
(28:38):
You know, get the advice and,and get the support that you
need.
And like you mentioned before,your dad will come over and, and
do all of the little things and,and now all of that is left to
you and it's, yeah, it's areally difficult transition or
shift in your own place in theworld, I think.
Erin (28:58):
Yeah.
Remembering how to cook certainthings, remembering how to do a
change in my air filter and myair conditioning, you know, just
little things you know, when wewere moving out of my mom's
house and we were going througheverything to sell things and
figure out what we wanted tokeep because she had like a 4000
square foot house that just had,Massive amounts of stuff.
(29:19):
And there's just so many thingsthat I wish that I had stories
from that, I just didn't eventhink to ask because I had never
seen the things or I won't evensay that I didn't care.
It's just that I wasn't matureenough to probably want to even
ask those questions.
Like, ask about her childhood.
Ask the stories of what happenedon the playground?
Were you a good student?
You know, just little thingsthat I wish I knew now that, you
(29:42):
know, I don't know that I'llever know.
Mandy (29:45):
I know.
I think so many of us have that.
Lots of stories.
I wish I knew, but the power ofhindsight,
Erin (29:53):
right?
But, you know, it makes us givesus the ability to move forward
and move differently in ourlife, you know?
Mandy (30:00):
So now being I think it's a little over six months since
I'm not great at math, but Ithink around there since your
mom died, six or seven,something like that.
What are you doing differentlyin your life since?
Since all of this has changed,you know, you lost your dad, you
took care of your mom for solong, and now you've lost your
mom.
Have you gotten to a point inyour life where things are, look
(30:23):
different and you envision adifferent future for yourself
than what you were doing priorto your dad getting sick?
Erin (30:31):
Yeah, I mean, I've completely changed my whole
career.
I'm now building a business forcaregivers to actually teach
them about the somatic piece andteaching them how to navigate
the stress that comes withcaregiving.
Of course, there's the logisticspiece that's in there that's
important because that givesspace for it.
But I think more than that, it'sthe stress that comes with it.
(30:54):
It's, Actually reallyinteresting because I'm in this
place of, so going intocaregiving, I, my nervous system
was not healthy.
And then being in caregiving,going through this grief, being
in a pandemic in the middle ofall of that with a cherry on
top, you know, being so isolatedfor years.
And I was isolated prior to thatwith my nervous system disorder
(31:15):
because I was like veryoverstimulated.
So I couldn't go places.
I couldn't go to stores.
I couldn't.
So I spent a lot of time priorto that on at home.
And so now I'm at the place ofreally learning how to feel
safe, even having fun, you know,because everything has felt
safe.
Protected and had such walls upfor so long for good reason,
(31:37):
with the pandemic and with allthe things, but like even
learning how to.
Be a human again, how tosocialize again, how to not feel
you know, I feel reallyoverwhelmed some days, you know,
with like so many adulting andthen business and this and this,
and I'm like, I'm frozen.
If one more person asks me onemore thing, I'm literally not
(32:00):
going to make it.
Like I have to go home and turnall the lights off and turn all
the sound off.
And no one talked to me.
Mandy (32:07):
Fair.
That sounds really nice.
I know moms everywhere
Erin (32:11):
are like, yeah, but it's just amazing how physical grief
is, you know, it's just such aphysical.
And so I'm just, right now I'mjust really being kind to my
body and I'm just, even when Ifeel like I could push through
and do more, like I'm takingextra time for rest and I'm
working to not shame myselfbecause I'm definitely a over
(32:33):
worker, you know, and Redefiningthat work is actually in the
rest and that's, that's actuallysome of the most productive time
that I could do.
And You know, there's timeswhere I go down scrolling on
social media and doing all ofthat stuff but really that's not
productive rest, you know, likeit's, it's not, it's still
(32:54):
mental stimulation that iscausing, all kinds of things
happening, but it's just it'slearning to be okay in this
silence that is It'schallenging, but it's so once
you get past all the noise andyou allow that to come like one
thing I do with my clients is Ihave them whenever they're
(33:14):
feeling really overwhelmed, justimagine your thoughts are like
clouds they're just passing bydon't grab onto it and like hold
on to it and like think throughall the things and you're
worried just let it go andeventually they'll slow down 30
minutes.
But they will stop eventuallyand then you get to this place
and then you never want toleave.
So because it's so peaceful.
Mandy (33:35):
Well, I love that because it's so counter American culture
and you know what society sortof expects is people to push
through it and stuff it down andnot focus on it.
So I think you're doing reallyimportant work and I love that
you're Giving back to thecaretaker community by offering
(33:55):
the support to others who are inthe position that you were in
recently and that you're beingkind to yourself in your grief.
That is my number one thing thatI tell people when they're
grieving is like, you just haveto really be kind to how you
talk to yourself, what youexpect of yourself, making sure
that you.
Honor those little hints of whatyou need in that moment and not
(34:18):
ignore them, but like reallylean into whatever that is.
So where, if people are curiousabout learning more about
caregiving and the services thatyou're providing, where could
they find you?
Erin (34:31):
Next gen caregivers on Instagram is the best place to
find me.
So thank you so much for sayingthat.
The only other thing that Iwould, add in was.
To you have to teach people howto grieve, how, how you grieve
and what you need in yourgrieving process.
Like we expect that, you know,the thing is, is like after the
(34:55):
major event of a death happens,you know, people are there
immediately, but then, you know,seven, 14 days goes by and
everybody goes back to theirregular life and like your life
does not change.
And in fact, it has changedcompletely, but yet.
You're still, you're just leftto pick up the pieces.
And so one thing that I havereally implemented is really
(35:16):
telling people what I need andasking for them to, and not
assuming that they will, and ifthey don't, then that means that
they don't care.
And because it's not true.
You know, they're just in theirown world and like literally all
of us only see what we'repersonally going through and I'm
guilty of this even in my griefthat sometimes I don't even see
(35:36):
other people and there'ssometimes that that's okay,
right?
Sometimes we have to be selfishin our grief.
And also I think sometimes we,it's, it's, it's, it's, it's,
focusing on other people canhelp us get out of our grief.
And so whatever that looks likefor you, like for me, sometimes
it's like serving at church ordoing different things, like
helping a friend folder laundryor, you know, and so like, just
(35:59):
not being afraid of if you needhelp with the laundry or you
know, or even just when you'rehaving a hard time teaching
people how to be with you inthat hard time, a lot of times
people like your grief, my griefmakes people feel uncomfortable.
You know, they want to stuff atissue in my face or they want
to like, don't cry, don't cry.
Your mom will be so sad if youwere sad and I'm like, no,
(36:21):
actually I'm allowed to cry.
Actually it's allowed to suck.
And actually I can also.
Be happy in five minutes fromnow.
Like, both can exist.
Like, it doesn't have to bethis, like, terrible thing.
You know, even though it isterrible, but just not being
afraid to, feel those griefemotions when they come up and
when they make peopleuncomfortable.
Unfortunately, I have to teachthem how to sit with me in those
(36:43):
emotions, which sucks because Idon't want to teach you when I'm
grieving.
Mandy (36:48):
Right, and some people I don't think know how to teach
others.
I think in that experience youcan be so overwhelmed with what
you're going through that yourreaction is anger when people
say things that areinvalidating.
That's such a good
Erin (37:03):
point.
Mandy (37:04):
You know, I, that was like my number one thing that I
hated that people would say isshe wouldn't want you to be sad.
I mean, it would just make me somad because that is not helpful.
And if roles were reversed, shewould be sad too.
If I were to die, you know, likeyou can't tell someone that they
(37:25):
can't be sad because the otherperson wouldn't want them to be
sad.
It's just such a silly thing.
To give us advice, but it comesup a lot.
So I think it's such a greatreminder to remind people that
like, if you can just take thatextra beat, take an extra minute
to evaluate, you know, theirintention was good, but that it
wasn't helpful in being able toexplain to them, you know, that
(37:49):
it.
That's not what I need rightnow.
And yeah, I give you a lot ofcredit.
You're like so in tune with youremotions and reactions and
everything.
I think it's a struggle for alot of people.
Erin (38:01):
That's, you know, it's so thank you for saying that
because I think sometimes I,because I've been doing this
work for so long that I feellike like I, it's not that I
don't feel those things.
It's just not my, I've beendoing this work for so long that
my automatic response is pause,think through, like, educate,
you know, but I, but it wasn'talways like that.
(38:23):
Let me be very clear.
It was not always like that.
But a lot of things happenedbefore this season of my life
that enabled me when I wentthrough this season to be in
that place.
So yeah, I had to, I had to tellsomebody just the other day,
like they started telling me thewhole, like, your mom wouldn't
want you to do this.
(38:43):
And I just basically had to tellher to stop talking and to hug
me.
Like I was just like, I justneed you to stop talking and
just give me a hug.
I'm not even going to try toexplain anything because even,
and it's, it's not their fault.
Right.
Like it, this is how societydeals with grief.
It's just, an American thing.
I don't even think it's a whole,like the world as a collective.
(39:03):
I think it's an American thing,but yeah, that's a topic for
another day.
But this was awesome.
So thank you for thisconversation.
Mandy (39:11):
I hope you enjoyed today's show and feel validated
in your own journey ofcaregiving.
If you or someone you know needssupport in that process, check
the show notes for Erin'scontact information.
For today's journal prompt,write about how you have found
joy in the most challengingperiod of your life.
Let the writing take you in anydirection it leads.
(39:31):
Thank you so much for listening.
Please make sure you subscribe,share this episode with anyone
who could benefit from it, andas always visit RememberGrams
anytime you need to send alittle love to someone who is
grieving.
Thank you and have a wonderfulday.
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