May 26, 2025 • 26 mins
The void between medical expertise and lived caregiving experience takes center stage in this powerful season finale. Join us as we recap the Alter Dementia Summit 2025!
This episode captures the vibrant energy of a gathering that feels simultaneously like a homecoming, family reunion, and professional conference. At its heart is a critical message from caregivers to the medical community: slow down and recognize us as the experts we've become.
Through moving testimonials, attendees express what they wish doctors understood – the need for comprehensive resources, guidance on medication management, and most importantly, to be treated as valued partners in care rather than passive recipients of medical directives.
The summit showcases remarkable work happening at the intersection of faith and healthcare, with Edward Smith sharing how his church in Fort Worth partners with Alter to support congregation members caring for loved ones with dementia.
We meet Jessica, whose social media presence has created vital community for countless caregivers, and Dr. Kalisha Barnes Johnson, whose NIH-funded research specifically focuses on Black adult daughters caring for parents with dementia.
Perhaps the most powerful revelation comes from Dr. Fayron Epps, whose vision has expanded from serving 24 churches to supporting 112 faith communities across five years.
For anyone walking the caregiving journey, this episode offers both practical insights and emotional resonance.
Subscribe now and join this vital conversation about transforming dementia care through authentic partnership and visit alterdementia.com for more information about the Alter Dementia program.
Host: J Smiles
Producer: Mia Hall
Editor: Annelise Udoye
"Alzheimer's is heavy but we ain't gotta be!"
IG: https://www.instagram.com/parentingup
FB: https://www.facebook.com/parentingup
YT: https://www.youtube.com/channel/UCDGFb1t2RC_m1yMnFJ2T4jw
Patreon: https://patreon.com/jsmilesstudios
TEXT 'PODCAST" to +1 404 737 1449 - to give J topic ideas, feedback, say hi!
Be sure to leave us a review!
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
What's up?
Parenting Up family.
This right here is a twofer.
Ok, I am standing in Detroit,so if you're only listening,
just figure this out.
I am right in front of theiconic Joe Louis forearm fist in
your face to announce, firstand foremost, this is the finale
(00:22):
of season five.
Y'all can you believe?
It's been five seasons of theParenting Up community, where
we're taking care of each other,we're taking care of caregivers
, we're supporting each other.
We are putting our foot indementia's ass.
J Smiles, why are you inDetroit?
Right, that's how we're goingto kick off season six.
(00:45):
You see how I'm going to swirlthat thing together.
Swirl it together like good oldgumbo.
You know my grandma from NewOrleans.
You know she's from New Orleans.
So, listen, tune in to seasonsix right after you finish
watching this hot ass finale forfifth season.
But listen, you wanna know whatis on it, right?
(01:10):
Ha, watch to find out, allright.
So I would like you to finishthis sentence.
We're talking to doctors.
Hey, doctors, I'm a caregiver.
Speaker 2 (01:19):
It would be helpful if you slowed down and treated
family caregivers like theexperts that they are.
They are truly the experts intheir loved ones.
They're the ones that are withthem 24-7 and oftentimes are met
with a lack of curiosity andnot given the credit for the
(01:39):
work and the intentionality thatgoes into how they've been
caring for their person.
So slow down, be curious, askus questions and truly listen to
what we have to offer.
Speaker 1 (01:48):
Parenting Up's caregiving adventures with
comedian Jay Smiles is theintense journey of unexpectedly
being fully responsible for mymama.
For over a decade, I've beenchipping away at the unknown,
advocating for her and pushingAlzheimer's awareness on anyone
and anything with a heartbeat.
I've been chipping away at theunknown, advocating for her and
pushing Alzheimer's awareness onanyone and anything with a
(02:09):
heartbeat.
Spoiler alert this shit isheavy.
That's why I started doingcomedy.
So be ready for the jokes.
Caregiver newbies, ogs andvillage members just willing to
prop up a caregiver.
You are in the right place.
Hi, this is Zeddy.
(02:31):
I hope you enjoy my daughter'spodcast.
Is that okay?
Today's supporter shout out isfrom YouTube Faith Villager
Research 7897.
I am in tears.
(02:51):
Three exclamation points thisis the best interview Dr Epps
has ever done.
Four exclamation points Wow,what a huge vote of confidence.
Thank you so much.
If you want to be the recipientof a supporter shout out, you
know what to do.
Leave a review on ApplePodcasts, youtube or Instagram.
(03:16):
Thank you in advance.
Today's episode what caregiverswant doctors to know?
Speaker 3 (03:26):
what caregivers want doctors to know.
When I wrote the initial grant,I was like, oh, I'm going to
work with 24 churches over fiveyears.
I'm going to find 24 churchesthat are going to.
Let me come in with this crazyidea.
I thought at that time and workwith them Y'all.
Five years later, we had 112faith communities.
So that's what happens, right?
(03:48):
That's why I think about allthese servants and we always
limit ourselves because we gotthese small goals, you know, and
God just showed up and showedout and said no, your people
need you, they need thisministry, and so we are growing.
Speaker 1 (04:04):
What's up, family?
I plucked one of the bestcaregivers known in all of the
social media land.
That's why I'm all over here onher shoulder, because I
actually do know her.
This is Jessica.
Yes, the whole caregivercolliding thingy.
(04:25):
She's famous Worldwide,internationally known.
Y'all remember when James Brownmade that famous.
Speaker 2 (04:33):
That might have been before my time.
Speaker 1 (04:35):
She's a baby till.
Anyway.
Look at this badge.
It has yellow stuff in itbecause she is a speaker.
Speaker 2 (04:43):
Yeah, yeah, yeah.
How you doing, sweetheart.
I'm doing great.
I love these glasses, by theway.
Thank you, I'm doing good andI'm glad to be here.
It's nice to be in a space withother Black caregivers and just
people who get it especiallyaround dementia, so I'm happy to
be here.
This is your first time at theAltar Summit.
Speaker 1 (05:00):
Yeah, what made you say yes?
Speaker 2 (05:08):
Oh, good question.
Well, you know, it'sinteresting because this time
last year, when they had thefirst summit, I was like I want
to be there and I'm going to bethere next year as a speaker.
And literally a few months ago,dr Epps reached out and she's
like do you want to be a speaker?
We would love to have you.
And I was like, yes, that waslike my vision, you know.
(05:30):
And so what made me say yes isone, dr Epps, because she truly
is a visionary and she like, isreal and down to earth and cares
about black people right,navigating dementia.
But then, two, I was likesomeone saw me.
My story matters and I want toshare it and I want to make sure
that other people can learnfrom me.
And that's why I said yes.
Speaker 1 (05:41):
Yeah, what do you hope to get for yourself?
So you're here as a speaker, soyou're going to be pouring in
what do you hope pours into you?
What do you come here needingto get massaged on or lavendub
loved?
Speaker 2 (05:59):
on.
Yeah, I come.
I hope to leave here with morecommunity.
Right, I share my life onsocial media, like everyone
knows everything that happenswith me and my mom.
But people really don't know,jessica, and so I would love to
get connected to people that arealso on the journey, that are
(06:20):
not just learning from me, thatwill check in on me and like be
a part of my circle of support,like that matters.
And what better place than aplace filled with black church
folks?
You know somebody going to calland pray for you.
I hope anyway.
Speaker 1 (06:36):
They're going to at least tell you remember to wear
those stockings and your hat onEaster girl.
Speaker 2 (06:41):
Which is coming up.
Right, I need to get my Easterdress, you're right.
Speaker 1 (06:45):
Yeah, what's the one?
Tell me something that nobodyon the ground knows about,
jessica.
Speaker 2 (06:51):
Oh my gosh, that no one knows about.
Jessica, here I'm a dancefitness instructor.
I teach a hip-hop-based formatcalled MixFit every Tuesday and
Friday at the YMCA, so it's alittle bit of my own self-care,
but also teaching others andjust creating this environment
(07:14):
of fun and stress-free and beingyourself and just truly working
out because you want to.
Speaker 1 (07:22):
What that is so amazing.
I had no idea.
I've known you personally forlike two years.
So dope, so dope, so dope.
Thank you so much.
I am happy that you manifestedspeaking here.
Okay, Atlanta, Alter Dr Epps.
Thank you so much for bringingmy girl, Jessica, here.
(07:43):
Let everyone who might notalready be following you know
where they can reach you.
Speaker 2 (07:49):
You can find me on Instagram at Career Caregiving
Collide, or my website, which isJessicaCGuthrycom.
Speaker 1 (07:58):
And she spells it all the proper English way.
Speaker 2 (08:01):
All right, I need all the letters, please.
Yes.
Speaker 1 (08:04):
Bye-bye, bye, hey, parenting Up family.
We are here at the Altar Summit2025.
And I'm standing here with MrEdward Smith.
He is actually one of thepartners with Dr Faron Epps.
So you really do the workwithin your church to make sure
(08:28):
that your parishioners, yourcongregation, gets to understand
more about being caregivers,how you support caregivers.
How hard has it been to getyour congregation on board?
Speaker 4 (08:46):
It really hasn't been hard.
Once we started the program,god would alter everything.
They've also been verysupportive with the liaison the
lady that's over the liaison.
They've really been supportivein giving us information, giving
us things that we need in orderto run our program.
(09:07):
We just started our library.
It hasn't been hard at allbecause they have made it easy
for us with the resources thatthey've brought in to our
community.
So it's really been helpful.
Speaker 1 (09:22):
Fantastic, where is your church located.
Speaker 4 (09:25):
Our church is in Fort Worth, texas.
We are Gift Ministries.
My bishop is Bishop DonaldHayes and I brought the program
in.
Well, I brought the idea of theprogram to Bishop and Bishop
received it.
But I appreciate my Bishopbecause he's not only received
the program but he's very activeand working with the program.
Speaker 1 (09:49):
That's amazing.
Is there one thing you can tellto others who may be interested
in starting a chapter or apartnership with Alters?
Is there something you wish youhad known in advance, or
something you can say that wouldbe encouraging to them about
starting their own partnership?
Speaker 4 (10:07):
Well, you know we can always say no something in
advance, and what I mean by thatis starting this journey.
I knew nothing because my momhad Alzheimer's and she lived
with it for five years and diedwith it.
So it's very dear to my heartthe program of getting the
education out because we knewnothing.
So I would just say, just likeMike said, just do it.
Speaker 1 (10:32):
That's a great way to end it.
Thank you so much, mr Smith.
I'm a Smith too.
I'm Jay Smiles.
That you so much, mr Smith, I'ma Smith too, I'm Jay Smiles
That'll do it for us.
What I will call manna fromheaven for the black girl
caregiver experience.
I'm at Alter 2025 and if yougot anything to do with dementia
(10:54):
and you happen to be black andI mean black, meaning somebody
in your lineage probably hassomething to do with being
enslaved and was born in america.
Baby, and if you identify orwas a girl at birth, this thing
(11:18):
is some kind of something.
Okay.
Okay, this is our own sorority.
I don't know what you call it,but this is a reunion and we are
seeing.
It's homecoming, thank you,this is homecoming, and Bayou
Classic and Essence and all thethings.
Somebody talking about bootsand where your fans at up there
(11:41):
in the church.
Okay, that's how we doing it.
But anyway, y'all, I am herewith the one and only Dr Kalisha
.
Now, if you go look her up, herlast name is Barnes Johnson.
Now, if you look it up, herpapers is Barnes, because she
started publishing before thatman put a ring on it.
His name is Johnson.
(12:01):
But I ain't about to go throughall of that.
Speaker 5 (12:06):
Honey, I love you, eric, I love you.
There we go.
Speaker 1 (12:10):
I had the pleasure of meeting her with Emory and the
IMCC Integrated Memory CareClinic y'all.
She personally has walked methrough, in the wee hours of the
night, moments of stress when Ithought my mama might be trying
(12:30):
to go meet with my daddy up inheaven.
She calmed me down and helpedme figure out what to do and how
to get Zeddy to the hospital onmore than one occasion.
There were times when you werethe one, Anyway, that might be
true.
Speaker 5 (12:46):
That might be true.
Don't, don't.
That might be true.
Speaker 1 (12:49):
I ain't lying dog.
Speaker 5 (12:50):
You're not.
You're not.
It's a blessing to supporty'all.
Speaker 1 (12:53):
It is a blessing.
She was the one when I was inTexas and Zeddy had the stroke
here in Atlanta.
You were the one that got thecall and calmed my caregiver
down.
Speaker 5 (13:03):
You remember that I do and got that sorority sister,
through all them clearances toget where she needed to get, to
make sure Zeddy wasn't byherself.
Speaker 1 (13:11):
My line sister got to go back with Zeddy and be in
all the little ER stuff and onthe ambulance, because the IMC
don't play by their dementiacare clients.
Baby, y'all better get in thesestreets with us.
You are a speaker here, whichain't easy to do.
(13:36):
I mean this, this.
This is top of the line interms of dementia care and our
community.
Look, I feel like I'm know alittle bit.
I ain't a speaker, they ain'tasked me to be a speaker and I
know a little bit about it alittle bit.
But you a speaker and you arespeaking on what?
(13:57):
Tell us about it.
Speaker 5 (13:58):
Understanding dementia and I'm hoping to put a
new spin on it for those whoare, like I mean understanding
dementia.
I know we're going to talk alittle bit about the different
types, cause, again, there'smore than one type of dementia.
We're going to talk aboutmedications that we use, what
doctors should and should notsay when they offering you these
medications, how to handle someof the different behaviors that
come with these different typesof dimensions, because
(14:20):
sometimes they might be seeingthings and hearing things,
sometimes they might beaggressive and pushing you,
fighting you, sometimes theyjust don't care, and so we got
to figure out how to be nimble,how to be dynamic, how to be
creative when it comes toworking through all those things
and still being able to say Ilove you mama, daddy, spouse,
(14:40):
partner, brother, sister,whatever relationship they got,
yeah.
Speaker 1 (14:44):
Right.
What is your research field?
What's your passion?
What gives you the right totell us what dementia is?
Speaker 5 (14:53):
Well, I think, because I've been in this space
for a while, whether it's as aclinician or a researcher, and
mainly the work I've been doingis around African-American black
adult daughters caring fortheir parents.
We know research supports thatadult daughters are doing the
majority of the work in blackcommunities.
No disrespect to the spouses,to the sons, to the nieces, to
the granddaughters, yada, yada,yada.
(15:15):
The list goes on.
But the adult daughters havebeen holding it down for a
really long time.
And you know what?
We don't know what y'all need.
We don't know what's working.
We don't know how to help you.
We don't know how to build yourquality of life.
We don't know how to help youhelp your parent.
There's a lot we don't know,and so that is my passion, that
is my mission is to make sure weare being specific about the
relationship between who youcare for and how those family
(15:38):
dynamics matter in the dementiacontext.
Speaker 1 (15:42):
You got funding to do this.
Speaker 5 (15:44):
Yes.
Speaker 1 (15:45):
From who?
Speaker 5 (15:47):
You know everybody's heard of these letters lately,
but NIH has funded me as well asthe Alzheimer's Association, so
I received a five-year grantfrom NIH.
God willing, I get my fifthyear.
Saints, just pray, Just praySaints.
And then I just have anothertwo-year grant from the
Alzheimer's Association.
Speaker 1 (16:04):
Just a two-year grant .
Anyway, what I didn't hear wasfish fries we don't have no
building fund over here.
Speaker 5 (16:13):
We're not a GoFundMe account.
Speaker 1 (16:16):
I heard so much, dr Kalisha, because what I heard
was the top of your researchmission and passion is for
people like me, adult daughterscaring for a parent, a family
member with dementia, withAlzheimer's Because you're right
(16:42):
.
Every time I'm talking withbefore I got with IMCC.
Everywhere I went, it didn'tmatter how highly ranked the
facility was.
They weren't really ready toengage with me, my questions and
my concerns.
They may have had a lot ofknow-how and knowledge about the
(17:05):
test, about the medicine andabout how to treat my mother
scientifically, but about thecare and concern from my POV, I
would give them an F.
So thank you, thank you fordeciding that I'm worth it.
(17:26):
Can I have a hug?
You can you know I love yougirl.
Alright, that worth it.
Can I have a hug?
You can you know I love yougirl?
All right, that's it.
And we're going to get her onthe Parenting Up podcast real
soon, all right.
Speaker 5 (17:38):
Thank you, I look forward to it.
Hey, what's up?
Parenting?
Speaker 1 (17:42):
Up family.
Guess what.
Have you ever wanted to connectwith other caregivers?
You wanna see more behind thescenes footage?
Wanna know what me and Zeddyare doing?
I know you do All things.
Jsmiles are finally ready foryou, even when I go live.
Uh-huh, do it now with us onPatreon.
(18:06):
Join us in the Patreoncommunity.
Catch everything we're doingVisit patreoncom forward.
Slash JSmilesStudios with an N.
Okay, this question is posed toa doctor.
(18:31):
Hey, doc, I'm a caregiver.
It sure would be good if youfill in the blank.
Speaker 6 (18:41):
Hey, doc, it would be nice if you would actually tell
me, or tell us, what to expect,what we are supposed to do.
How are we supposed to care forour person, our mother, cousin,
whoever it may be?
It would help if you wouldprovide resources and resources
that will allow us to reach outand gain a little bit more
(19:04):
insightful information on whatwe're dealing with.
It would help if you wouldguide us, to let us know when
this happens.
This is what you need to do.
It would help if you tell usabout the medication that you're
giving our family members, ourspouse or whoever it may be.
It would help if you would justbe a little bit more, have a
little bit more empathy for usand not shove a diagnosis down
(19:28):
our face and not really treatour spouse or our parent as a
diagnosis instead of a person.
Be with us while we're goingthrough this situation.
Be caring, be understanding, bepatient, show us the way, guide
us, because this is all new.
This is not something we justwoke up one morning and figured
(19:49):
out.
This is what we're going to do.
This is the person that hascared for us the most of our
lives and now we're in asituation where we have to
respond or return the care.
We're just asking for a littlebit of empathy.
We're asking for a little bitof guidance.
Give us the resources thattechnically we don't have.
We don't know where to go.
(20:09):
We don't know where to go.
We don't know what to do.
Be patient and show us the ways.
That's all we're asking for.
We're not asking for anythingelse.
Speaker 1 (20:20):
Look at here, Jimmy.
Look at here.
Look at here I sound like,sound like Aiden Murphy.
Speaker 2 (20:23):
Look at here.
Look at here.
Look at here.
Speaker 1 (20:25):
Jimmy, were you sitting in on my mama's
diagnosis?
Jimmy, were you sitting in onmy mama's diagnosis?
Because I swear it sounds likeyou jumped right up in my head
and stole all my thoughts forhow I felt when my mother was
initially diagnosed.
Speaker 7 (20:37):
Thank you, so very much, you're so welcome.
Speaker 6 (20:40):
Thank you very much, I appreciate it.
Speaker 7 (20:41):
It sure would be good if we were able to get the
proper resources and informationthat is needed for a lot of the
caregivers to be able toprovide to the person they're
caring for, as well as a lot ofthe medications that are
actually given.
A lot of times, a lot of thepatient is given so many
(21:04):
different medications and thenyou, as a caregiver, you're
responsible for giving that, andthat's a big job and you want
to make sure you're doing itproper and in the right way, but
also making sure you're notover-medicating the actual
person, because that isimportant.
So that would be good.
A lot of the differentadditional hands-on, I think
(21:25):
would be nice as a caregiverBecause, remember you coming in
in, you're just either adaughter, you're a niece, you're
a granddaughter, um, it may be.
You know you're a son, um, so itmay be somebody that has the
actual, I'm gonna say, medicalknowledge.
But to be honest, a lot of usdon't.
A lot of us are just steppingin and filling the shoes to take
(21:46):
care, whether if it's ourgrandmother, the mother, the
aunt or sister just stepping into do the job the best way we
can.
But while we're doing that, wewant to make sure we're taking
care of them properly.
So I think for me I would sayhaving that additional training,
because even though it'simpacting so many people, it
impacts everybody in a differentway.
(22:06):
Nobody's dementia orAlzheimer's is impacted the same
way.
What member A went through,member B may not go through.
So I think just having all thepros and cons and the proper
information would be needed.
Now that's what I'm saying,that I think would work.
But it's just me.
I only wanted what you thought.
Speaker 1 (22:27):
So thank you so very much.
You know how we do Listen.
You know mama and them said I'mso happy you ain't add a talk
for mama and them.
This time, baby, you can speakfor yourself.
That's it.
Speaker 7 (22:40):
Thank you so much.
You are so welcome and thankyou for what you do.
I think it is important to havesomebody like yourself to be
able to ask those questions,because what I'm going through
somebody else may not be goingthrough, so it may be different.
So just being able to hearsomebody say, oh, I never
thought about that, that is agood question.
So thank you, ladies, for doingwhat you do.
(23:01):
I appreciate that.
Speaker 2 (23:05):
Slow down and treated family caregivers like the
experts that they are.
They are truly the experts intheir loved ones.
They're the ones that are withthem 24-7 and oftentimes are met
with a lack of curiosity andnot given the credit for the
work and the intentionality thatgoes into how they've been
caring for their person.
So slow down, be curious, askus questions and truly listen to
(23:30):
what we have to offer as wehelp support our loved ones
living with dementia For free.
Speaker 1 (23:36):
She didn't say that part, but I did.
But we're doing it for free.
Sorry, she's sweeter than I am.
I'm a comedian.
Speaker 5 (23:42):
We out.
Speaker 1 (23:48):
Snuggle up and so amazing, I actually had a
one-on-one interview with the DrFaron Epps.
I mean, this lady hassingle-handedly changed the game
on what it is to actually getgrant money, institutional money
(24:09):
, and combine it with the needsof the black community and the
faith community, how you gonnaget government money and pastors
to listen to you, to change theway they reach out to their
congregations.
Can this lady run for president?
I don't know, but getting totalk to her, they gave me a
(24:31):
solid 30 minutes in the middleof her summit.
Get out of here.
Whose life am I leading?
I got to sit in on an improvingthrough improv, actually watched
how they teach people.
I might actually have to takethe class myself Because I was
like, okay, wait, I can't evendigest all y'all doing, I need
(24:54):
my own notebook.
That was dope.
I ran into one of the biggest,baddest social media icons in
the space of caregiving the oneand only Jessica Guthrie.
What, yeah, y'all know how itgo.
Y'all know how it go.
That's my boo.
(25:14):
And then Dr Kalisha I mean theway she holds it down over at
IMCC and she's actually the onethat kept me calm when Zeddy had
the stroke.
Like these people are at thetop of the food chain when it
comes to this industry.
And they care about Zeddy, theycare about me, they care about
(25:40):
y'all, and they're right heremaking it happen.
At Alter, they took time offwork Y'all.
We not by ourselves, we're notby ourselves, we not by
ourselves.
We gonna keep pushing.
We gonna keep pushing, causeAlzheimer's might be heavy, but
we ain't gotta be.
(26:00):
Thank you for tuning in.
I mean really, really, really.
Thank you so very much fortuning in, whether you watching
this on YouTube, or if you'rewatching this on YouTube, or if
you're listening on yourfavorite podcast audio platform.
Either way, wherever you are,subscribe, come back.
That's the way you're going toknow when we do something next.
(26:23):
Y'all know how it is.
I'm J Smiles.
I might just drop something hotin the middle of the night.
What's up?
Parenting Up family.
This right here is a twofer.
Ok, I am standing in Detroit,so if you're only listening,
just figure this out.
I am right in front of theiconic Joe Louis forearm fist in
your face to announce, firstand foremost, this is the finale
(00:22):
of season five.
Y'all can you believe?
It's been five seasons of theParenting Up community, where
we're taking care of each other,we're taking care of caregivers
, we're supporting each other.
We are putting our foot indementia's ass.
J Smiles, why are you inDetroit?
Right, that's how we're goingto kick off season six.
(00:45):
You see how I'm going to swirlthat thing together.
Swirl it together like good oldgumbo.
You know my grandma from NewOrleans.
You know she's from New Orleans.
So, listen, tune in to seasonsix right after you finish
watching this hot ass finale forfifth season.
But listen, you wanna know whatis on it, right?
(01:10):
Ha, watch to find out, allright.
So I would like you to finishthis sentence.
We're talking to doctors.
Hey, doctors, I'm a caregiver.
Speaker 2 (01:19):
It would be helpful if you slowed down and treated
family caregivers like theexperts that they are.
They are truly the experts intheir loved ones.
They're the ones that are withthem 24-7 and oftentimes are met
with a lack of curiosity andnot given the credit for the
(01:39):
work and the intentionality thatgoes into how they've been
caring for their person.
So slow down, be curious, askus questions and truly listen to
what we have to offer.
Speaker 1 (01:48):
Parenting Up's caregiving adventures with
comedian Jay Smiles is theintense journey of unexpectedly
being fully responsible for mymama.
For over a decade, I've beenchipping away at the unknown,
advocating for her and pushingAlzheimer's awareness on anyone
and anything with a heartbeat.
I've been chipping away at theunknown, advocating for her and
pushing Alzheimer's awareness onanyone and anything with a
(02:09):
heartbeat.
Spoiler alert this shit isheavy.
That's why I started doingcomedy.
So be ready for the jokes.
Caregiver newbies, ogs andvillage members just willing to
prop up a caregiver.
You are in the right place.
Hi, this is Zeddy.
(02:31):
I hope you enjoy my daughter'spodcast.
Is that okay?
Today's supporter shout out isfrom YouTube Faith Villager
Research 7897.
I am in tears.
(02:51):
Three exclamation points thisis the best interview Dr Epps
has ever done.
Four exclamation points Wow,what a huge vote of confidence.
Thank you so much.
If you want to be the recipientof a supporter shout out, you
know what to do.
Leave a review on ApplePodcasts, youtube or Instagram.
(03:16):
Thank you in advance.
Today's episode what caregiverswant doctors to know?
Speaker 3 (03:26):
what caregivers want doctors to know.
When I wrote the initial grant,I was like, oh, I'm going to
work with 24 churches over fiveyears.
I'm going to find 24 churchesthat are going to.
Let me come in with this crazyidea.
I thought at that time and workwith them Y'all.
Five years later, we had 112faith communities.
So that's what happens, right?
(03:48):
That's why I think about allthese servants and we always
limit ourselves because we gotthese small goals, you know, and
God just showed up and showedout and said no, your people
need you, they need thisministry, and so we are growing.
Speaker 1 (04:04):
What's up, family?
I plucked one of the bestcaregivers known in all of the
social media land.
That's why I'm all over here onher shoulder, because I
actually do know her.
This is Jessica.
Yes, the whole caregivercolliding thingy.
(04:25):
She's famous Worldwide,internationally known.
Y'all remember when James Brownmade that famous.
Speaker 2 (04:33):
That might have been before my time.
Speaker 1 (04:35):
She's a baby till.
Anyway.
Look at this badge.
It has yellow stuff in itbecause she is a speaker.
Speaker 2 (04:43):
Yeah, yeah, yeah.
How you doing, sweetheart.
I'm doing great.
I love these glasses, by theway.
Thank you, I'm doing good andI'm glad to be here.
It's nice to be in a space withother Black caregivers and just
people who get it especiallyaround dementia, so I'm happy to
be here.
This is your first time at theAltar Summit.
Speaker 1 (05:00):
Yeah, what made you say yes?
Speaker 2 (05:08):
Oh, good question.
Well, you know, it'sinteresting because this time
last year, when they had thefirst summit, I was like I want
to be there and I'm going to bethere next year as a speaker.
And literally a few months ago,dr Epps reached out and she's
like do you want to be a speaker?
We would love to have you.
And I was like, yes, that waslike my vision, you know.
(05:30):
And so what made me say yes isone, dr Epps, because she truly
is a visionary and she like, isreal and down to earth and cares
about black people right,navigating dementia.
But then, two, I was likesomeone saw me.
My story matters and I want toshare it and I want to make sure
that other people can learnfrom me.
And that's why I said yes.
Speaker 1 (05:41):
Yeah, what do you hope to get for yourself?
So you're here as a speaker, soyou're going to be pouring in
what do you hope pours into you?
What do you come here needingto get massaged on or lavendub
loved?
Speaker 2 (05:59):
on.
Yeah, I come.
I hope to leave here with morecommunity.
Right, I share my life onsocial media, like everyone
knows everything that happenswith me and my mom.
But people really don't know,jessica, and so I would love to
get connected to people that arealso on the journey, that are
(06:20):
not just learning from me, thatwill check in on me and like be
a part of my circle of support,like that matters.
And what better place than aplace filled with black church
folks?
You know somebody going to calland pray for you.
I hope anyway.
Speaker 1 (06:36):
They're going to at least tell you remember to wear
those stockings and your hat onEaster girl.
Speaker 2 (06:41):
Which is coming up.
Right, I need to get my Easterdress, you're right.
Speaker 1 (06:45):
Yeah, what's the one?
Tell me something that nobodyon the ground knows about,
jessica.
Speaker 2 (06:51):
Oh my gosh, that no one knows about.
Jessica, here I'm a dancefitness instructor.
I teach a hip-hop-based formatcalled MixFit every Tuesday and
Friday at the YMCA, so it's alittle bit of my own self-care,
but also teaching others andjust creating this environment
(07:14):
of fun and stress-free and beingyourself and just truly working
out because you want to.
Speaker 1 (07:22):
What that is so amazing.
I had no idea.
I've known you personally forlike two years.
So dope, so dope, so dope.
Thank you so much.
I am happy that you manifestedspeaking here.
Okay, Atlanta, Alter Dr Epps.
Thank you so much for bringingmy girl, Jessica, here.
(07:43):
Let everyone who might notalready be following you know
where they can reach you.
Speaker 2 (07:49):
You can find me on Instagram at Career Caregiving
Collide, or my website, which isJessicaCGuthrycom.
Speaker 1 (07:58):
And she spells it all the proper English way.
Speaker 2 (08:01):
All right, I need all the letters, please.
Yes.
Speaker 1 (08:04):
Bye-bye, bye, hey, parenting Up family.
We are here at the Altar Summit2025.
And I'm standing here with MrEdward Smith.
He is actually one of thepartners with Dr Faron Epps.
So you really do the workwithin your church to make sure
(08:28):
that your parishioners, yourcongregation, gets to understand
more about being caregivers,how you support caregivers.
How hard has it been to getyour congregation on board?
Speaker 4 (08:46):
It really hasn't been hard.
Once we started the program,god would alter everything.
They've also been verysupportive with the liaison the
lady that's over the liaison.
They've really been supportivein giving us information, giving
us things that we need in orderto run our program.
(09:07):
We just started our library.
It hasn't been hard at allbecause they have made it easy
for us with the resources thatthey've brought in to our
community.
So it's really been helpful.
Speaker 1 (09:22):
Fantastic, where is your church located.
Speaker 4 (09:25):
Our church is in Fort Worth, texas.
We are Gift Ministries.
My bishop is Bishop DonaldHayes and I brought the program
in.
Well, I brought the idea of theprogram to Bishop and Bishop
received it.
But I appreciate my Bishopbecause he's not only received
the program but he's very activeand working with the program.
Speaker 1 (09:49):
That's amazing.
Is there one thing you can tellto others who may be interested
in starting a chapter or apartnership with Alters?
Is there something you wish youhad known in advance, or
something you can say that wouldbe encouraging to them about
starting their own partnership?
Speaker 4 (10:07):
Well, you know we can always say no something in
advance, and what I mean by thatis starting this journey.
I knew nothing because my momhad Alzheimer's and she lived
with it for five years and diedwith it.
So it's very dear to my heartthe program of getting the
education out because we knewnothing.
So I would just say, just likeMike said, just do it.
Speaker 1 (10:32):
That's a great way to end it.
Thank you so much, mr Smith.
I'm a Smith too.
I'm Jay Smiles.
That you so much, mr Smith, I'ma Smith too, I'm Jay Smiles
That'll do it for us.
What I will call manna fromheaven for the black girl
caregiver experience.
I'm at Alter 2025 and if yougot anything to do with dementia
(10:54):
and you happen to be black andI mean black, meaning somebody
in your lineage probably hassomething to do with being
enslaved and was born in america.
Baby, and if you identify orwas a girl at birth, this thing
(11:18):
is some kind of something.
Okay.
Okay, this is our own sorority.
I don't know what you call it,but this is a reunion and we are
seeing.
It's homecoming, thank you,this is homecoming, and Bayou
Classic and Essence and all thethings.
Somebody talking about bootsand where your fans at up there
(11:41):
in the church.
Okay, that's how we doing it.
But anyway, y'all, I am herewith the one and only Dr Kalisha
.
Now, if you go look her up, herlast name is Barnes Johnson.
Now, if you look it up, herpapers is Barnes, because she
started publishing before thatman put a ring on it.
His name is Johnson.
(12:01):
But I ain't about to go throughall of that.
Speaker 5 (12:06):
Honey, I love you, eric, I love you.
There we go.
Speaker 1 (12:10):
I had the pleasure of meeting her with Emory and the
IMCC Integrated Memory CareClinic y'all.
She personally has walked methrough, in the wee hours of the
night, moments of stress when Ithought my mama might be trying
(12:30):
to go meet with my daddy up inheaven.
She calmed me down and helpedme figure out what to do and how
to get Zeddy to the hospital onmore than one occasion.
There were times when you werethe one, Anyway, that might be
true.
Speaker 5 (12:46):
That might be true.
Don't, don't.
That might be true.
Speaker 1 (12:49):
I ain't lying dog.
Speaker 5 (12:50):
You're not.
You're not.
It's a blessing to supporty'all.
Speaker 1 (12:53):
It is a blessing.
She was the one when I was inTexas and Zeddy had the stroke
here in Atlanta.
You were the one that got thecall and calmed my caregiver
down.
Speaker 5 (13:03):
You remember that I do and got that sorority sister,
through all them clearances toget where she needed to get, to
make sure Zeddy wasn't byherself.
Speaker 1 (13:11):
My line sister got to go back with Zeddy and be in
all the little ER stuff and onthe ambulance, because the IMC
don't play by their dementiacare clients.
Baby, y'all better get in thesestreets with us.
You are a speaker here, whichain't easy to do.
(13:36):
I mean this, this.
This is top of the line interms of dementia care and our
community.
Look, I feel like I'm know alittle bit.
I ain't a speaker, they ain'tasked me to be a speaker and I
know a little bit about it alittle bit.
But you a speaker and you arespeaking on what?
(13:57):
Tell us about it.
Speaker 5 (13:58):
Understanding dementia and I'm hoping to put a
new spin on it for those whoare, like I mean understanding
dementia.
I know we're going to talk alittle bit about the different
types, cause, again, there'smore than one type of dementia.
We're going to talk aboutmedications that we use, what
doctors should and should notsay when they offering you these
medications, how to handle someof the different behaviors that
come with these different typesof dimensions, because
(14:20):
sometimes they might be seeingthings and hearing things,
sometimes they might beaggressive and pushing you,
fighting you, sometimes theyjust don't care, and so we got
to figure out how to be nimble,how to be dynamic, how to be
creative when it comes toworking through all those things
and still being able to say Ilove you mama, daddy, spouse,
(14:40):
partner, brother, sister,whatever relationship they got,
yeah.
Speaker 1 (14:44):
Right.
What is your research field?
What's your passion?
What gives you the right totell us what dementia is?
Speaker 5 (14:53):
Well, I think, because I've been in this space
for a while, whether it's as aclinician or a researcher, and
mainly the work I've been doingis around African-American black
adult daughters caring fortheir parents.
We know research supports thatadult daughters are doing the
majority of the work in blackcommunities.
No disrespect to the spouses,to the sons, to the nieces, to
the granddaughters, yada, yada,yada.
(15:15):
The list goes on.
But the adult daughters havebeen holding it down for a
really long time.
And you know what?
We don't know what y'all need.
We don't know what's working.
We don't know how to help you.
We don't know how to build yourquality of life.
We don't know how to help youhelp your parent.
There's a lot we don't know,and so that is my passion, that
is my mission is to make sure weare being specific about the
relationship between who youcare for and how those family
(15:38):
dynamics matter in the dementiacontext.
Speaker 1 (15:42):
You got funding to do this.
Speaker 5 (15:44):
Yes.
Speaker 1 (15:45):
From who?
Speaker 5 (15:47):
You know everybody's heard of these letters lately,
but NIH has funded me as well asthe Alzheimer's Association, so
I received a five-year grantfrom NIH.
God willing, I get my fifthyear.
Saints, just pray, Just praySaints.
And then I just have anothertwo-year grant from the
Alzheimer's Association.
Speaker 1 (16:04):
Just a two-year grant .
Anyway, what I didn't hear wasfish fries we don't have no
building fund over here.
Speaker 5 (16:13):
We're not a GoFundMe account.
Speaker 1 (16:16):
I heard so much, dr Kalisha, because what I heard
was the top of your researchmission and passion is for
people like me, adult daughterscaring for a parent, a family
member with dementia, withAlzheimer's Because you're right
(16:42):
.
Every time I'm talking withbefore I got with IMCC.
Everywhere I went, it didn'tmatter how highly ranked the
facility was.
They weren't really ready toengage with me, my questions and
my concerns.
They may have had a lot ofknow-how and knowledge about the
(17:05):
test, about the medicine andabout how to treat my mother
scientifically, but about thecare and concern from my POV, I
would give them an F.
So thank you, thank you fordeciding that I'm worth it.
(17:26):
Can I have a hug?
You can you know I love yougirl.
Alright, that worth it.
Can I have a hug?
You can you know I love yougirl?
All right, that's it.
And we're going to get her onthe Parenting Up podcast real
soon, all right.
Speaker 5 (17:38):
Thank you, I look forward to it.
Hey, what's up?
Parenting?
Speaker 1 (17:42):
Up family.
Guess what.
Have you ever wanted to connectwith other caregivers?
You wanna see more behind thescenes footage?
Wanna know what me and Zeddyare doing?
I know you do All things.
Jsmiles are finally ready foryou, even when I go live.
Uh-huh, do it now with us onPatreon.
(18:06):
Join us in the Patreoncommunity.
Catch everything we're doingVisit patreoncom forward.
Slash JSmilesStudios with an N.
Okay, this question is posed toa doctor.
(18:31):
Hey, doc, I'm a caregiver.
It sure would be good if youfill in the blank.
Speaker 6 (18:41):
Hey, doc, it would be nice if you would actually tell
me, or tell us, what to expect,what we are supposed to do.
How are we supposed to care forour person, our mother, cousin,
whoever it may be?
It would help if you wouldprovide resources and resources
that will allow us to reach outand gain a little bit more
(19:04):
insightful information on whatwe're dealing with.
It would help if you wouldguide us, to let us know when
this happens.
This is what you need to do.
It would help if you tell usabout the medication that you're
giving our family members, ourspouse or whoever it may be.
It would help if you would justbe a little bit more, have a
little bit more empathy for usand not shove a diagnosis down
(19:28):
our face and not really treatour spouse or our parent as a
diagnosis instead of a person.
Be with us while we're goingthrough this situation.
Be caring, be understanding, bepatient, show us the way, guide
us, because this is all new.
This is not something we justwoke up one morning and figured
(19:49):
out.
This is what we're going to do.
This is the person that hascared for us the most of our
lives and now we're in asituation where we have to
respond or return the care.
We're just asking for a littlebit of empathy.
We're asking for a little bitof guidance.
Give us the resources thattechnically we don't have.
We don't know where to go.
(20:09):
We don't know where to go.
We don't know what to do.
Be patient and show us the ways.
That's all we're asking for.
We're not asking for anythingelse.
Speaker 1 (20:20):
Look at here, Jimmy.
Look at here.
Look at here I sound like,sound like Aiden Murphy.
Speaker 2 (20:23):
Look at here.
Look at here.
Look at here.
Speaker 1 (20:25):
Jimmy, were you sitting in on my mama's
diagnosis?
Jimmy, were you sitting in onmy mama's diagnosis?
Because I swear it sounds likeyou jumped right up in my head
and stole all my thoughts forhow I felt when my mother was
initially diagnosed.
Speaker 7 (20:37):
Thank you, so very much, you're so welcome.
Speaker 6 (20:40):
Thank you very much, I appreciate it.
Speaker 7 (20:41):
It sure would be good if we were able to get the
proper resources and informationthat is needed for a lot of the
caregivers to be able toprovide to the person they're
caring for, as well as a lot ofthe medications that are
actually given.
A lot of times, a lot of thepatient is given so many
(21:04):
different medications and thenyou, as a caregiver, you're
responsible for giving that, andthat's a big job and you want
to make sure you're doing itproper and in the right way, but
also making sure you're notover-medicating the actual
person, because that isimportant.
So that would be good.
A lot of the differentadditional hands-on, I think
(21:25):
would be nice as a caregiverBecause, remember you coming in
in, you're just either adaughter, you're a niece, you're
a granddaughter, um, it may be.
You know you're a son, um, so itmay be somebody that has the
actual, I'm gonna say, medicalknowledge.
But to be honest, a lot of usdon't.
A lot of us are just steppingin and filling the shoes to take
(21:46):
care, whether if it's ourgrandmother, the mother, the
aunt or sister just stepping into do the job the best way we
can.
But while we're doing that, wewant to make sure we're taking
care of them properly.
So I think for me I would sayhaving that additional training,
because even though it'simpacting so many people, it
impacts everybody in a differentway.
(22:06):
Nobody's dementia orAlzheimer's is impacted the same
way.
What member A went through,member B may not go through.
So I think just having all thepros and cons and the proper
information would be needed.
Now that's what I'm saying,that I think would work.
But it's just me.
I only wanted what you thought.
Speaker 1 (22:27):
So thank you so very much.
You know how we do Listen.
You know mama and them said I'mso happy you ain't add a talk
for mama and them.
This time, baby, you can speakfor yourself.
That's it.
Speaker 7 (22:40):
Thank you so much.
You are so welcome and thankyou for what you do.
I think it is important to havesomebody like yourself to be
able to ask those questions,because what I'm going through
somebody else may not be goingthrough, so it may be different.
So just being able to hearsomebody say, oh, I never
thought about that, that is agood question.
So thank you, ladies, for doingwhat you do.
(23:01):
I appreciate that.
Speaker 2 (23:05):
Slow down and treated family caregivers like the
experts that they are.
They are truly the experts intheir loved ones.
They're the ones that are withthem 24-7 and oftentimes are met
with a lack of curiosity andnot given the credit for the
work and the intentionality thatgoes into how they've been
caring for their person.
So slow down, be curious, askus questions and truly listen to
(23:30):
what we have to offer as wehelp support our loved ones
living with dementia For free.
Speaker 1 (23:36):
She didn't say that part, but I did.
But we're doing it for free.
Sorry, she's sweeter than I am.
I'm a comedian.
Speaker 5 (23:42):
We out.
Speaker 1 (23:48):
Snuggle up and so amazing, I actually had a
one-on-one interview with the DrFaron Epps.
I mean, this lady hassingle-handedly changed the game
on what it is to actually getgrant money, institutional money
(24:09):
, and combine it with the needsof the black community and the
faith community, how you gonnaget government money and pastors
to listen to you, to change theway they reach out to their
congregations.
Can this lady run for president?
I don't know, but getting totalk to her, they gave me a
(24:31):
solid 30 minutes in the middleof her summit.
Get out of here.
Whose life am I leading?
I got to sit in on an improvingthrough improv, actually watched
how they teach people.
I might actually have to takethe class myself Because I was
like, okay, wait, I can't evendigest all y'all doing, I need
(24:54):
my own notebook.
That was dope.
I ran into one of the biggest,baddest social media icons in
the space of caregiving the oneand only Jessica Guthrie.
What, yeah, y'all know how itgo.
Y'all know how it go.
That's my boo.
(25:14):
And then Dr Kalisha I mean theway she holds it down over at
IMCC and she's actually the onethat kept me calm when Zeddy had
the stroke.
Like these people are at thetop of the food chain when it
comes to this industry.
And they care about Zeddy, theycare about me, they care about
(25:40):
y'all, and they're right heremaking it happen.
At Alter, they took time offwork Y'all.
We not by ourselves, we're notby ourselves, we not by
ourselves.
We gonna keep pushing.
We gonna keep pushing, causeAlzheimer's might be heavy, but
we ain't gotta be.
(26:00):
Thank you for tuning in.
I mean really, really, really.
Thank you so very much fortuning in, whether you watching
this on YouTube, or if you'rewatching this on YouTube, or if
you're listening on yourfavorite podcast audio platform.
Either way, wherever you are,subscribe, come back.
That's the way you're going toknow when we do something next.
(26:23):
Y'all know how it is.
I'm J Smiles.
I might just drop something hotin the middle of the night.
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Las Culturistas with Matt Rogers and Bowen Yang
Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.