May 26, 2025
What Caregivers Want Doctors To Know
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!"
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00:00 - Season 5 Finale Announcement
01:48 - What Caregivers Want Doctors to Know
04:04 - Interview with Jessica: Caregiving Collide
08:07 - Edward Smith: Faith Communities Supporting Caregivers
10:41 - Dr. Kalisha Barnes Johnson: Researching Black Caregivers
18:00 - Caregivers' Message to Doctors
23:45 - Reflections on the Altar Summit
WEBVTT
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What's up?
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Parenting Up family.
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This right here is a twofer.
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Ok, I am standing in Detroit, so if you're only listening, just figure this out.
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I am right in front of the iconic Joe Louis forearm fist in your face to announce, first and foremost, this is the finale of season five.
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Y'all can you believe?
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It's been five seasons of the Parenting Up community, where we're taking care of each other, we're taking care of caregivers, we're supporting each other.
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We are putting our foot in dementia's ass.
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J Smiles, why are you in Detroit?
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Right, that's how we're going to kick off season six.
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You see how I'm going to swirl that thing together.
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Swirl it together like good old gumbo.
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You know my grandma from New Orleans.
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You know she's from New Orleans.
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So, listen, tune in to season six right after you finish watching this hot ass finale for fifth season.
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But listen, you wanna know what is on it, right?
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Ha, watch to find out, all right.
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So I would like you to finish this sentence.
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We're talking to doctors.
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Hey, doctors, I'm a caregiver.
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It would be helpful if you slowed down and treated family caregivers like the experts that they are.
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They are truly the experts in their loved ones.
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They're the ones that are with them 24-7 and oftentimes are met with a lack of curiosity and not given the credit for the work and the intentionality that goes into how they've been caring for their person.
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So slow down, be curious, ask us questions and truly listen to what we have to offer.
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Parenting Up's caregiving adventures with comedian Jay Smiles is the intense journey of unexpectedly being fully responsible for my mama.
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For over a decade, I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat.
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I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat.
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Spoiler alert this shit is heavy.
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That's why I started doing comedy.
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So be ready for the jokes.
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Caregiver newbies, ogs and village members just willing to prop up a caregiver.
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You are in the right place.
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Hi, this is Zeddy.
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I hope you enjoy my daughter's podcast.
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Is that okay?
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Today's supporter shout out is from YouTube Faith Villager Research 7897.
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I am in tears.
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Three exclamation points this is the best interview Dr Epps has ever done.
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Four exclamation points Wow, what a huge vote of confidence.
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Thank you so much.
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If you want to be the recipient of a supporter shout out, you know what to do.
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Leave a review on Apple Podcasts, youtube or Instagram.
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Thank you in advance.
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Today's episode what caregivers want doctors to know?
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what caregivers want doctors to know.
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When I wrote the initial grant, I was like, oh, I'm going to work with 24 churches over five years.
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I'm going to find 24 churches that are going to.
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Let me come in with this crazy idea.
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I thought at that time and work with them Y'all.
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Five years later, we had 112 faith communities.
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So that's what happens, right?
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That's why I think about all these servants and we always limit ourselves because we got these small goals, you know, and God just showed up and showed out and said no, your people need you, they need this ministry, and so we are growing.
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What's up, family?
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I plucked one of the best caregivers known in all of the social media land.
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That's why I'm all over here on her shoulder, because I actually do know her.
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This is Jessica.
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Yes, the whole caregiver colliding thingy.
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She's famous Worldwide, internationally known.
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Y'all remember when James Brown made that famous.
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That might have been before my time.
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She's a baby till.
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Anyway.
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Look at this badge.
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It has yellow stuff in it because she is a speaker.
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Yeah, yeah, yeah.
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How you doing, sweetheart.
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I'm doing great.
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I love these glasses, by the way.
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Thank you, I'm doing good and I'm glad to be here.
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It's nice to be in a space with other Black caregivers and just people who get it especially around dementia, so I'm happy to be here.
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This is your first time at the Altar Summit.
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Yeah, what made you say yes?
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Oh, good question.
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Well, you know, it's interesting because this time last year, when they had the first summit, I was like I want to be there and I'm going to be there next year as a speaker.
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And literally a few months ago, dr Epps reached out and she's like do you want to be a speaker?
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We would love to have you.
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And I was like, yes, that was like my vision, you know.
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And so what made me say yes is one, dr Epps, because she truly is a visionary and she like, is real and down to earth and cares about black people right, navigating dementia.
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But then, two, I was like someone saw me.
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My story matters and I want to share it and I want to make sure that other people can learn from me.
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And that's why I said yes.
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Yeah, what do you hope to get for yourself?
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So you're here as a speaker, so you're going to be pouring in what do you hope pours into you?
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What do you come here needing to get massaged on or lavendub loved?
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on.
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Yeah, I come.
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I hope to leave here with more community.
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Right, I share my life on social media, like everyone knows everything that happens with me and my mom.
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But people really don't know, jessica, and so I would love to get connected to people that are also on the journey, that are not just learning from me, that will check in on me and like be a part of my circle of support, like that matters.
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And what better place than a place filled with black church folks?
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You know somebody going to call and pray for you.
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I hope anyway.
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They're going to at least tell you remember to wear those stockings and your hat on Easter girl.
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Which is coming up.
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Right, I need to get my Easter dress, you're right.
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Yeah, what's the one?
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Tell me something that nobody on the ground knows about, jessica.
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Oh my gosh, that no one knows about.
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Jessica, here I'm a dance fitness instructor.
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I teach a hip-hop-based format called MixFit every Tuesday and Friday at the YMCA, so it's a little bit of my own self-care, but also teaching others and just creating this environment of fun and stress-free and being yourself and just truly working out because you want to.
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What that is so amazing.
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I had no idea.
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I've known you personally for like two years.
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So dope, so dope, so dope.
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Thank you so much.
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I am happy that you manifested speaking here.
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Okay, Atlanta, Alter Dr Epps.
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Thank you so much for bringing my girl, Jessica, here.
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Let everyone who might not already be following you know where they can reach you.
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You can find me on Instagram at Career Caregiving Collide, or my website, which is JessicaCGuthrycom.
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And she spells it all the proper English way.
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All right, I need all the letters, please.
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Yes.
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Bye-bye, bye, hey, parenting Up family.
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We are here at the Altar Summit 2025.
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And I'm standing here with Mr Edward Smith.
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He is actually one of the partners with Dr Faron Epps.
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So you really do the work within your church to make sure that your parishioners, your congregation, gets to understand more about being caregivers, how you support caregivers.
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How hard has it been to get your congregation on board?
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It really hasn't been hard.
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Once we started the program, god would alter everything.
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They've also been very supportive with the liaison the lady that's over the liaison.
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They've really been supportive in giving us information, giving us things that we need in order to run our program.
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We just started our library.
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It hasn't been hard at all because they have made it easy for us with the resources that they've brought in to our community.
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So it's really been helpful.
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Fantastic, where is your church located.
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Our church is in Fort Worth, texas.
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We are Gift Ministries.
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My bishop is Bishop Donald Hayes and I brought the program in.
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Well, I brought the idea of the program to Bishop and Bishop received it.
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But I appreciate my Bishop because he's not only received the program but he's very active and working with the program.
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That's amazing.
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Is there one thing you can tell to others who may be interested in starting a chapter or a partnership with Alters?
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Is there something you wish you had known in advance, or something you can say that would be encouraging to them about starting their own partnership?
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Well, you know we can always say no something in advance, and what I mean by that is starting this journey.
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I knew nothing because my mom had Alzheimer's and she lived with it for five years and died with it.
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So it's very dear to my heart the program of getting the education out because we knew nothing.
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So I would just say, just like Mike said, just do it.
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That's a great way to end it.
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Thank you so much, mr Smith.
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I'm a Smith too.
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I'm Jay Smiles.
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That you so much, mr Smith, I'm a Smith too, I'm Jay Smiles That'll do it for us.
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What I will call manna from heaven for the black girl caregiver experience.
00:10:48.667 --> 00:11:07.030
I'm at Alter 2025 and if you got anything to do with dementia and you happen to be black and I mean black, meaning somebody in your lineage probably has something to do with being enslaved and was born in america.
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Baby, and if you identify or was a girl at birth, this thing is some kind of something.
00:11:19.274 --> 00:11:20.115
Okay.
00:11:20.115 --> 00:11:24.601
Okay, this is our own sorority.
00:11:24.601 --> 00:11:29.365
I don't know what you call it, but this is a reunion and we are seeing.
00:11:29.365 --> 00:11:37.547
It's homecoming, thank you, this is homecoming, and Bayou Classic and Essence and all the things.
00:11:37.547 --> 00:11:42.284
Somebody talking about boots and where your fans at up there in the church.
00:11:42.284 --> 00:11:43.400
Okay, that's how we doing it.
00:11:43.400 --> 00:11:48.187
But anyway, y'all, I am here with the one and only Dr Kalisha.
00:11:48.187 --> 00:11:53.923
Now, if you go look her up, her last name is Barnes Johnson.
00:11:53.923 --> 00:12:00.691
Now, if you look it up, her papers is Barnes, because she started publishing before that man put a ring on it.
00:12:00.691 --> 00:12:01.883
His name is Johnson.
00:12:01.883 --> 00:12:04.070
But I ain't about to go through all of that.
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Honey, I love you, eric, I love you.
00:12:08.687 --> 00:12:09.409
There we go.
00:12:10.221 --> 00:12:18.995
I had the pleasure of meeting her with Emory and the IMCC Integrated Memory Care Clinic y'all.
00:12:18.995 --> 00:12:32.279
She personally has walked me through, in the wee hours of the night, moments of stress when I thought my mama might be trying to go meet with my daddy up in heaven.
00:12:32.279 --> 00:12:42.635
She calmed me down and helped me figure out what to do and how to get Zeddy to the hospital on more than one occasion.
00:12:42.635 --> 00:12:46.828
There were times when you were the one, Anyway, that might be true.
00:12:46.989 --> 00:12:47.730
That might be true.
00:12:47.730 --> 00:12:48.633
Don't, don't.
00:12:48.633 --> 00:12:49.575
That might be true.
00:12:49.875 --> 00:12:50.518
I ain't lying dog.
00:12:50.538 --> 00:12:50.979
You're not.
00:12:50.979 --> 00:12:51.259
You're not.
00:12:51.259 --> 00:12:53.198
It's a blessing to support y'all.
00:12:53.639 --> 00:12:54.140
It is a blessing.
00:12:54.140 --> 00:12:58.432
She was the one when I was in Texas and Zeddy had the stroke here in Atlanta.
00:12:58.432 --> 00:13:03.028
You were the one that got the call and calmed my caregiver down.
00:13:03.100 --> 00:13:10.910
You remember that I do and got that sorority sister, through all them clearances to get where she needed to get, to make sure Zeddy wasn't by herself.
00:13:11.595 --> 00:13:26.472
My line sister got to go back with Zeddy and be in all the little ER stuff and on the ambulance, because the IMC don't play by their dementia care clients.
00:13:26.472 --> 00:13:29.750
Baby, y'all better get in these streets with us.
00:13:29.750 --> 00:13:36.486
You are a speaker here, which ain't easy to do.
00:13:36.486 --> 00:13:38.169
I mean this, this.
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This is top of the line in terms of dementia care and our community.
00:13:45.246 --> 00:13:48.956
Look, I feel like I'm know a little bit.
00:13:48.956 --> 00:13:53.254
I ain't a speaker, they ain't asked me to be a speaker and I know a little bit about it a little bit.
00:13:53.254 --> 00:13:57.147
But you a speaker and you are speaking on what?
00:13:57.147 --> 00:13:57.849
Tell us about it.
00:13:58.470 --> 00:14:03.831
Understanding dementia and I'm hoping to put a new spin on it for those who are, like I mean understanding dementia.
00:14:03.831 --> 00:14:08.361
I know we're going to talk a little bit about the different types, cause, again, there's more than one type of dementia.
00:14:08.361 --> 00:14:44.575
We're going to talk about medications that we use, what doctors should and should not say when they offering you these medications, how to handle some of the different behaviors that come with these different types of dimensions, because sometimes they might be seeing things and hearing things, sometimes they might be aggressive and pushing you, fighting you, sometimes they just 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 to working through all those things and still being able to say I love you mama, daddy, spouse, partner, brother, sister, whatever relationship they got, yeah.
00:14:44.956 --> 00:14:45.155
Right.
00:14:45.155 --> 00:14:48.649
What is your research field?
00:14:48.649 --> 00:14:49.591
What's your passion?
00:14:49.591 --> 00:14:52.690
What gives you the right to tell us what dementia is?
00:14:53.620 --> 00:15:04.173
Well, I think, because I've been in this space for a while, whether it's as a clinician or a researcher, and mainly the work I've been doing is around African-American black adult daughters caring for their parents.
00:15:04.173 --> 00:15:09.951
We know research supports that adult daughters are doing the majority of the work in black communities.
00:15:09.951 --> 00:15:15.493
No disrespect to the spouses, to the sons, to the nieces, to the granddaughters, yada, yada, yada.
00:15:15.493 --> 00:15:16.201
The list goes on.
00:15:16.201 --> 00:15:19.308
But the adult daughters have been holding it down for a really long time.
00:15:19.308 --> 00:15:19.870
And you know what?
00:15:19.870 --> 00:15:21.013
We don't know what y'all need.
00:15:21.013 --> 00:15:21.923
We don't know what's working.
00:15:21.923 --> 00:15:23.653
We don't know how to help you.
00:15:23.653 --> 00:15:25.160
We don't know how to build your quality of life.
00:15:25.160 --> 00:15:26.883
We don't know how to help you help your parent.
00:15:26.883 --> 00:15:41.365
There's a lot we don't know, and so that is my passion, that is my mission is to make sure we are being specific about the relationship between who you care for and how those family dynamics matter in the dementia context.
00:15:42.828 --> 00:15:44.091
You got funding to do this.
00:15:44.833 --> 00:15:45.033
Yes.
00:15:45.995 --> 00:15:46.375
From who?
00:15:47.118 --> 00:15:54.221
You know everybody's heard of these letters lately, but NIH has funded me as well as the Alzheimer's Association, so I received a five-year grant from NIH.
00:15:54.221 --> 00:15:56.480
God willing, I get my fifth year.
00:15:56.480 --> 00:15:58.962
Saints, just pray, Just pray Saints.
00:15:58.962 --> 00:16:02.065
And then I just have another two-year grant from the Alzheimer's Association.
00:16:04.461 --> 00:16:05.183
Just a two-year grant.
00:16:05.183 --> 00:16:11.643
Anyway, what I didn't hear was fish fries we don't have no building fund over here.
00:16:13.756 --> 00:16:15.162
We're not a GoFundMe account.
00:16:16.195 --> 00:16:42.605
I heard so much, dr Kalisha, because what I heard was the top of your research mission and passion is for people like me, adult daughters caring for a parent, a family member with dementia, with Alzheimer's Because you're right.
00:16:42.605 --> 00:16:46.616
Every time I'm talking with before I got with IMCC.
00:16:46.616 --> 00:16:53.089
Everywhere I went, it didn't matter how highly ranked the facility was.
00:16:53.089 --> 00:17:00.225
They weren't really ready to engage with me, my questions and my concerns.
00:17:00.225 --> 00:17:20.479
They may have had a lot of know-how and knowledge about the test, about the medicine and about how to treat my mother scientifically, but about the care and concern from my POV, I would give them an F.
00:17:20.479 --> 00:17:26.682
So thank you, thank you for deciding that I'm worth it.
00:17:26.682 --> 00:17:28.713
Can I have a hug?
00:17:28.713 --> 00:17:29.659
You can you know I love you girl.
00:17:29.659 --> 00:17:30.102
Alright, that worth it.
00:17:30.102 --> 00:17:30.482
Can I have a hug?
00:17:30.482 --> 00:17:32.614
You can you know I love you girl?
00:17:32.614 --> 00:17:34.597
All right, that's it.
00:17:34.597 --> 00:17:38.276
And we're going to get her on the Parenting Up podcast real soon, all right.
00:17:38.596 --> 00:17:39.898
Thank you, I look forward to it.
00:17:39.898 --> 00:17:41.682
Hey, what's up?
00:17:41.682 --> 00:17:42.224
Parenting?
00:17:42.345 --> 00:17:43.026
Up family.
00:17:43.026 --> 00:17:43.847
Guess what.
00:17:43.847 --> 00:17:46.798
Have you ever wanted to connect with other caregivers?
00:17:46.798 --> 00:17:49.984
You wanna see more behind the scenes footage?
00:17:49.984 --> 00:17:52.429
Wanna know what me and Zeddy are doing?
00:17:52.429 --> 00:17:55.156
I know you do All things.
00:17:55.156 --> 00:18:01.640
Jsmiles are finally ready for you, even when I go live.
00:18:01.640 --> 00:18:06.383
Uh-huh, do it now with us on Patreon.
00:18:06.383 --> 00:18:10.521
Join us in the Patreon community.
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