Young Caregiving & Alzheimer's with Jessica C. Guthrie

Jessica C. Guthrie was your typical ambitious millennial. She had it all figured out: The big dreams, the Ivy League education, the clear path to the top. And then, when Jessica was 26, her mom's Alzheimer's Disease diagnosis changed the plan.

In this episode, Jessica, a caregiving advocate and consultant, joins Anita and Zara to talk about the realities of being a young caregiver.  

They cover:

• How Jessica realized it was time to go from long-distance caregiver to in-person caregiver
• What the medical community ought to understand about patient and caregiver experiences
• The effect becoming a caregiver has had on her friendships
• What it's truly like to be a woman of color in the caregiving community
• How her mother's constant presence shaped the way Jessica cares

Chapters

00:00 Introduction to Jessica Guthrie's caregiving journey
01:03 Jessica's background and her mother's diagnosis
03:01 Evolving caregiving roles and routines
05:26 Physical dependence and hands-on care
07:50 Misconceptions about dementia progression
08:33 Clues and tools for long-distance caregiving
11:51 Advocating for diagnosis and early intervention
13:45 Communication and trust with healthcare providers
17:09 Reevaluating life goals and caregiving impact
20:16 The power of presence and relationship
22:49 Navigating racial disparities in healthcare
26:34 The importance of community and support networks
30:03 Language, culture, and underrepresentation in caregiving
34:21 Addressing stigma and biases in dementia care
37:45 What doctors often overlook in dementia diagnosis
43:22 The need for diverse voices in healthcare conversations
45:12 Stories of bias and misdiagnosis
48:49 Advice for caregivers and self-care tips
54:54 The importance of community affirmations
55:31 Millennial caregiving survival tips
56:39 Jessica's message of hope and community support

Topics covered: Caregiving, Alzheimer's, mental health, caregiving tips, Black caregivers, family support, dementia, long-distance caregiving, caregiver advocacy

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Transcript

SPEAKER_00 0:03

Welcome to the Millennial Sandwich, a space for real conversations about millennials in the middle. Not just of our own minds, but also of a caregiving sandwich. I'm Dr. Anifa Chandra, a geriatrician and expert in elder care.

SPEAKER_01 0:14

And I'm Zara Hanowalt, a parenting journalist and expert in American motherhood. And even we don't have all the answers. Join us as we figure out life in the middle.

SPEAKER_00 0:23

Welcome back, everybody. Today we're talking with Jessica C. Guthrie, who is a caregiver advocate, speaker, and writer. Jessica's mom was diagnosed with Alzheimer's when Jessica was just 26 years old. And since then, she's become a leading voice for millennial caregivers and kind of pulling back the curtain on the realities of caregiving. So, Jessica, we're so glad you're here. Welcome.

SPEAKER_02 0:46

Thanks for having me. It's so good to see you in real life. Yes.

SPEAKER_00 0:50

Yeah. So we follow your story. We love seeing how you care for and care about your mother, who you lovingly refer to as CG. I would love for you to kind of share from your perspective how you got here. Whoa, how we got here.

SPEAKER_02 1:06

Okay, so hi everyone. I am Jessica C. Guthrie, and I'm the daughter of Constance Guthrie. My mother is someone who has always been so bold and unapologetic. She was a businesswoman, owned her own hair salon, um, and then gave all that up to raise me in suburban Virginia. I was her 39-year-old surprise. She thought she had the flu, uh, but it I was not the flu. And so I start there because my mom has always, we've been two peas in a pod. She was a single mom. I'm an only child, and I know the power of selfless love because of the ways in which she showed up for me and was always just so present and proximate. I start there because my mom was diagnosed with Alzheimer's disease at the age of 65, and I was 26. I was living my life in Dallas, Texas, working in nonprofit leadership, and my mom was an educator in suburban Virginia. And the moment that we started to notice that things were changing, things were different, and we got this diagnosis, it was an easy yes to say, like, I don't know anything about Alzheimer's disease. I don't know anything about caring for someone else, but I will figure it out. And I will do whatever it takes to preserve her dignity and honor her and respect her. And because that's that's how my mother raised me and how she poured into me. And so it it only felt right to the same thing for her. And I've been here ever since. We're now in year almost 12 of this caregiving journey, as she has been thriving in the best way possible. So that's the headline, those are the headlines, the overview.

SPEAKER_01 2:43

How has the caregiving role evolved for you throughout her diagnosis and the progression of her disease?

SPEAKER_02 2:51

Such a great question. I think a lot of folks, when they think of Alzheimer's disease, think a lot about like the short-term memory loss, right? At the repetition of questions and potentially like losing things. Uh, and that's a part of it. And so at the beginning of navigating this, I was I was a long-distance caregiver. So I was traveling back and forth between Dallas, Texas, and Virginia. And I was coming home at first like once a month. And when I would come home, I would prep about 40 and 50 meals to put those in the freezer. We would organize doctor's appointments and make sure she would make her appointments on time. I would pick up prescriptions and then organize her medicine, morning and evening meds. Um, I would clean the house and look for all the places she had hidden random things like banana peels in the closet. And then I would set up all these routines. So engagement books, dot-to-dot books, number counting, like all the things to keep her quote unquote busy, right? And engaged. And that that was our story for the first couple of years. I would fly home, set up systems and routines, clean things, meal prep, appointments. She was still very independent in the sense that she could live on her own, follow directions, follow like things that I would tell her on the phone. Then we like evolve into this phase where she starts wandering and leaving the front door. And I could no longer just leave her there by herself. And so we move into the phase of caregiving where I needed companion care and someone else to be with her because frankly she's bored, right? But that then turned into Jessica, you actually need to move back home. And so care was once from a distance, managing with doorbell cameras and video cameras and phone calls and notes and post-its. Like I was, I very much felt like a coordinator, right? Like I was doing everything from afar, but like while my body was in Texas, my brain was in Virginia. And then any caregiving then evolved to me being back home in my childhood bedroom helping my mom because she needed me to be here. Because I could no longer just rely on four hours of care. That then evolved into my mother needing support walking as her walking gait changes, right? Like in addition to the short-term memory loss, there was like these ups and downs in her behaviors. And you're like, okay, whoa, one moment you're really happy, the next moment you're crying, the next moment you're kind of angry and agitated, right? So navigating sundowning in real time was a big part of this middle phase. And then we rotated like the kind of I consider like the more hands-on part of caring is my mom stopped walking in 2022. My mom lost the ability to hold herself up. And so she would just like lean. Uh, my mom lost the ability to stand and use the restroom on her own. And so from 2022 to present, my mother became very physically dependent on me. And that's the part that I didn't I wasn't prepared for when it came to caregiving. Like I was good thinking through the logistics and being the manager and the leader, like being the CEO of care. Yeah. I was totally unprepared for, oh my gosh, my mom has fallen. How do I get her up? And I'm myself. I have to call the fire department. Oh my gosh, they think they're gonna think that I'm a terrible person if I'm calling multiple times a week, but I can't get her up. You know, and so anyway, this has gotten long-winded, but the point is that my care has changed from being someone who could like organize and set things up to now being very much hands-on. I'm at the point now where I feed her every bite of food, I give her every sip of water. I am her literal lifeline. Um, I change her, I rotate her in the bed. Everything happens in and around the bed now, which is very different from 12 years ago.

SPEAKER_00 6:34

That's something I think I wish there could be like commercials or billboards that we get wrong about dementia. So I'm a geriatrician, I specialize in dementia, and I think probably 10 times a day I am having to educate families about what the progression of dementia actually looks like because what we see on TV and movies is just, you know, you don't recognize people or you wander into the wrong room and and it stops there and no one is talking about the function. So it's often a surprise for families when their loved one, you know, starts falling, like you said, or isn't able to change or bathe themselves. And as clinicians and and dementia experts, we know, well, yeah, that's the progression of the disease. But if you don't know that about your loved one and you're seeing that, that that can be so scary. So I'm just so thankful that you're spreading the word that that is what we look for when we look for advancing disease. And just the piece of being long distance, people ask all the time, what can I do from far away? And it's easy for me to give tips as as a doctor and just say, like, oh, you should have eyes on the ground and you should kind of learn about their routine. I would love to hear from you what actually gave you the clues that you needed to be closer, what helped being far away since you've been through it. I would love to hear your perspective on that.

SPEAKER_02 8:03

Yeah. So I do think that small things first. I installed, I had a doorbell camera first, so I could always see my mom, at least on the outside. And then I eventually, you know, those things are not cheap, but I got I got more cameras so I could see my mom in the house. My mom could also, from in the early years, being a long distance caregiver, my mom could still pick up the phone and like follow things. And so I had a routine of calling. We, I mean, we were on the phone all the time, but I had a set schedule of three times a day. And those three times were connected to her schedule. So in the morning it was like, let's get you up, let's get breakfast, let's do meds, afternoon, lunch, right? And so as somebody who's an educator, I think teachers have a leg up when it comes to caring for people from afar because all you know is systems. But I think the tip that I would share is getting a schedule or a routine that allows you to have touch points with your person throughout the day is step one. Like create some sense of predictability. That way you know what to expect, they know what to expect, and you kind of help in the chaos of everything else in between. So have a schedule with some routines that could be calling, that could be checking on the cameras, whatever it might be. I think the second thing is what you mentioned is you need to have an on-the-ground support team that is like your first call, whether that's a neighbor or a family friend or church friend. I am so grateful for the ladies at church who picked my mom up for choir rehearsal or took her to the pharmacy because I'm an only child. I didn't have any siblings or other family close by that I really had to lean on as like extensions of Jessica.

SPEAKER_03 9:40

Yeah.

SPEAKER_02 9:40

And that was so important. I think the third, the third thing is like people need to know that you're a long-distance caregiver because a lot of the stress is actually managing how people think your person is being cared for or not. When it's actually like, no, I know everything that's happening in that in that house. I'm just not there. But people need to know, oh, yes, I'm gone. I'm in such and such place for X number of weeks. Here are the supports in place, but also the pharmacy, the doctor, right? Your neighbors, all your emergency contacts need to know your scenario so that they don't think that you're abandoning or not caring for your person. That matters a lot. And then I think the last thing, honestly, is part of being a long-distance caregiver or even just helping from a distance is releasing control. And so you're not gonna be able to do everything, right? That would, that's why you have a team of people. But then also, like, you've got to give yourself some grace because things are gonna happen that you might not know about or that might be really hard for you to process, but like you have to trust that you have put everything else in place. And if something does happen, it's not your fault. It is okay. We will get through this. And I think some of the emotions of that we don't talk about enough either.

SPEAKER_01 10:58

Were you the one who started noticing signs of dementia in your mom? And then were you the one who advocated for her to go and get a diagnosis?

SPEAKER_02 11:07

Such a great question. I find myself to be really fortunate here. So my mom had a real had had past tense because that's a whole different topic about relationships. My mom and her brother are really close, and they would talk on the phone multiple times a day. My uncle is a physician, and she would go and visit him every summer during her summer breaks from school. And it was during those trips, he would be like, Jessica, your mom is acting a little strange. Your mom was like wandering around the parking lot, and we were like clearly in the car, or you know, she was repeating herself. And I was like, Really? You know, because I I could I I wasn't always there. And he was like, Yeah, I'm kind of concerned. And it was a summer she was in Chicago visiting him. They went and did like a basic evaluation at Rush Memory Clinic. Um, and so I got like a basic write-up, and they were like, well, based on our conversation with your mom, these are the things we noticed. And it gave me information to be able to ask stronger questions of her primary care physician, but also gave me insight into like what I could be looking for. And as soon as I had the insight, I was like, oh my gosh, she is repeating herself. Oh my goodness, she's asking, she's losing. My mom was so routinely, she put everything in the same place all the time. And so she couldn't find her bag for work. She couldn't find her keys. And so now I'm on like high alert because I have insight enough to know. And it's if it I'm so grateful for my uncle to have made that first step because that then gave me enough awareness to set up a primary care physician appointment. Then I said, can you please give me some references to local neurologists? And that very much started the whole process.

SPEAKER_00 12:44

Did your mom push back at all on some of these things, like going to the doctor or even when you were talking about the schedule or cameras? Was there what did you kind of push back?

SPEAKER_02 12:55

No, not really. And I think that this is where our relationship comes in because she knew that I was never gonna do do any harm or like do wrong by her. And I would always, I would always, I wouldn't be like, it's because you have Alzheimer's. No, it's like a I gotta make sure I can see what's happening so I can better support you. So this is for for your safety. And she's like, oh, okay, okay. You know, or when I was labeling, and they're still in the kitchen, every single cabinet has a label, right? And she's like, why are you doing this? And then I was like, it's so that you can actually put things away when you wash the dishes. Oh, okay, that's helpful. Thank you. You know what I mean? And so I always played into how is this going to make things easier for you or ease some of the stress that I know that you're having? And that allowed her to like easily say yes to all the things.

SPEAKER_01 13:43

You know, we talk a lot about how women take on more caregiving responsibility, but I'm curious, especially from you, Anita, are women typically more proactive as patients too? Oh, yeah.

SPEAKER_00 13:54

Absolutely, like 100%. Yes. If I see an older man and his wife or sister or daughter or daughter-in-law isn't right there, there's no like pretty much you won't know what is happening or what's going on. So, yes, daughters, daughters are saving the world.

SPEAKER_03 14:13

Yes, we are.

SPEAKER_00 14:14

Can I ask if we're going back to 26-year-old Jessica? What was the plan? Yeah. What was it gonna be?

SPEAKER_02 14:22

Wow, 26-year-old Jessica's it's a lifetime ago. It really is, right? Um, I have always been someone who's been very type A, very ambitious, plan A, B, and C. I was going to be Secretary of Education. Like that has always been on my vision board, right? I I did Teach for America. I had gone to the Ivy League. I was gonna join, I joined Teach for America staff. I was gonna be executive by 30, grad school, right? Like I, I all I saw for Jessica was like achievement, achievement, achievement. Like I'm gonna be leader of whatever, right? By this milestone. And I'm gonna be paid six plus figures. I'm gonna be Dr. Guthrie by 40. It was all, it was very Jessica focused, but also very like career and accomplishment driven, which, you know, I'm a millennial. Like that, that's based in it. You know, you work hard, you achieve, and you become, you know, really great. Like that's like that's yeah, I'm simplifying it, but that was the goal, the vision. And all of that changed the moment that I became a caregiver. And none of those things matter half as much as they did when I was 26.

SPEAKER_01 15:37

Yeah, we talk so much about how motherhood can have you reevaluating your goals or have you reprioritize. And I mean, frankly, we weren't talking about that until recently either, but we never include caregiving as a whole when we have those conversations. And we need to be.

SPEAKER_00 15:55

Yeah, we never know. We never know when it's gonna come for us. It could be when you're 26 or 66, whenever it is, but we're not preparing for that to kind of disrupt our entire lives.

SPEAKER_02 16:08

It's a disruption. It's a disruption, yes. Let's on like it's a disruption, right? But there's also so much that I've gained from being a caregiver of a parent that I used to think, like, oh my gosh, am I behind? Like I'm missing out on so much, or like I'm not starting a family right now. And I and this has only come more recently. 12 years in the game. I now have some maturity when I think about things now, and versus like anger and resentment. But now it's like, wow, the ability to care for someone else. That's not like someone that I birthed or you know, chose to have, but to be able to like to pour into them and meet them where they are and like hold space for them and all of their humanity and treat them with dignity and respect, like that is a unique and special experience that you only get when you say yes to caring for a parent. But what that now means for me is like my level of compassion and grace for other people and ability to, you know, navigate the world with just a lot more patience and understanding. I would not have gotten that if I didn't do this. So, yes, disruption, but I feel like I'm I'm like a much better human because of this experience, which I'm so grateful for now. Ten years ago, I don't know, but now I'm so grateful for it, you know.

SPEAKER_00 17:26

That's beautiful. Yeah, I always tell my patients when I see that they have an adult child at bedside or just in their lives, that it's that means they did something right, right? Not everybody has that. So, one, your mom is so lucky to have you, and it sounds like you're really lucky to have her as well. You mentioned earlier that it was a no-brainer for you to take care of her in whatever way she needed because of how she was with you. And as a mom, I kind of want to know what what is that? What did she give to you that made you feel like, yeah, of course I'm gonna I'm gonna do this for her.

SPEAKER_02 18:05

Yeah. Side note, I also recognize that I not everyone has a great relationship with their parent, right? And there's so many folks who are choosing to care in a relationship where their parent did not treat them well. And that in itself is just so noble to still show up for them. And so I I acknowledge that I'm speaking from a very privileged space of having this relationship, and also acknowledge that like that's not the reality for so many people, too. Um but for my mom, gosh, you know, there's this, there's this through line of like presence, right? And my mom has always been there. And and and when I think about it now, it's like, you know, she she was a very successful salon owner, yet I, you know, I I ran that shop when I was a kid. I was like the hostess with the mostess, right? And I learned the power of like relationships and seeing my mom working really hard. But my mom was always there. My mom cared about being present for me so much that she sold her business and like built a home in suburban Virginia. She got a job at the local school district so that she would have the same days off and holidays that I had as a kid going to the same school district. The power of, you know, my mom saying, you know, we're gonna put you in all these activities. And CG was not a driver, but she drove me to every every recital, every rehearsal, every practice. She was there, first one there, right? Parked right up front, right? Or the first in the front row. Or when I was in the gifted and talented program, when I was up late procrastinating on projects, who was up at 2 a.m. with me? My mom. When it was time for me to practice speeches or competition speeches, I would call her, you know, and she would walk me through my speeches or like get up and do my hair. I say all this to say my mom has always made a way to be there. And there's something about the power of like presence and proximity that I that I took from that. And I think that when I think now about how I'm choosing to care for her, it's from a place of being present and being proximate. Because literally every step of the way, that's what my mom modeled for me. So that's what she did right. I think there's the other piece around sacrifice of being willing to ask for help and accept it, right? Being willing to, you know, go without to make sure that I had money for X, Y, or Z camp or enrichment activity. There's just something about the level of selflessness as a parent that I not only I didn't, I didn't just like experience it, but I know that it came from a place of wanting to make sure that Jessica was the best I could be. She might have only had like a high school education, a vocational career, but Jessica was gonna be great. It's like, yeah, that's what she did. She really invested in me and believed that I was so much bigger than whatever I thought I could be, you know?

SPEAKER_03 21:02

Yeah. Amazing.

SPEAKER_01 21:04

But also you you recognized all of that, right? And not everybody can do that. Not everybody can truly look at the full scope of how someone has cared for them. So good for you. I mean, good for you for really being able to recognize everything she gave you.

SPEAKER_02 21:18

Yeah. I'm so grateful. Yeah.

SPEAKER_00 21:21

How did your friends understand what your life looked like? Did that change your friendships when you had to move back home? Yeah.

SPEAKER_02 21:28

I'm in this season now, probably because we're getting to the end, or I'm really just thinking about like, what is friendship? You know, especially when you're in like your midlife and you're like also just people change. And you know, there's people grow apart. There's also this thing in my mind now that I'm reflecting on of just you can't expect your friends to hold this like with you for 12 years. That's a long time, you know. So, anywho, back to your question, but that's what's in my mind is I am. So grateful for my friends at the beginning of this journey. I think, you know, I was living in Dallas and I was traveling back and forth. And I had a really great Dallas contingent of friends that kept me normal, right? In the sense of like they kept inviting me to things. They kept, you know, showing up for me, even if it meant driving me to the airport, right? Like those little things of keeping a sense of normalcy when I would fly back, grab dinner, those things really mattered. And I'm so grateful for that. I also am really grateful for the friends that showed up when I least expected it. It's the people that we I wasn't really close to, but they were the ones that were like, what can we do for you? How can we support you? And that looked like groceries, Amazon wish lists. That looked like, I know that you're traveling, I could pick up this thing at work for you. So there was always this, especially in the early years, this sense of how do we help just make Jessica feel seen and affirmed and know that we got her. And I think, you know, even in the transition back home, no one really knew how hard. No one, that's a thing too, for most caregivers I feel, but like no one really knows how crazy and hard it's getting. And I'm so grateful for the few friends that like saw me and checked in on me when things got really quiet on my end. I think a lot of friendships shifted when I was no longer reciprocating or like reaching back out or checking in. Gosh, I really wanted to, but I only had capacity for Jessica. Or I needed his sleep. And so I've lost friends along the way because they just fizzled out. And I think I'm now in a season of creating new friendships. And what does that look like when I've been a caregiver for so long and my my only conversation is really about like consulting your caregiving? Like, I'm not that fun, you know? Like so that's now a season for me right now, is like, how do you make new friends after you've been in this position for so long? I rambled there. Friendships are strange, is the is the answer. Friendships are hard when you're a caregiver.

SPEAKER_00 24:11

And you just don't know what's gonna strain a friendship, right? And like there just aren't that many millennial caregivers. And even on the other side of the when you're when you find yourself having more time and wanting to reconnect with people, they may still have no idea what it is to be a caregiver or to have a sick family member or to grieve, all of the things. And it might be a totally different kind of friend that you're looking for.

SPEAKER_02 24:38

Yeah, that's it. That's so it. I also think that because I've always been the strong person, the leader, the person who steps up, does a thing. It's like, oh, but Jessica's got it. We don't want to bother her. And I think that that's that was that's really common of like, oh, well, if I were her, I wouldn't want X, Y, or Z, so I'm not gonna reach out. But it's like, oh my gosh, I would love a text message, you know, like send a voice note and I will respond if I can, you know. It's the assumption when you or someone, especially when you're like the oldest or the only daughter, like you've got it together. Uh, but it's like, oh no, things are crumbling. We're drowning.

SPEAKER_00 25:15

Any like you look at social media and you're like, oh, they're doing fine. You're like, that's not, that doesn't mean you're checking on your friend if you're just like liking their posts. Yes.

SPEAKER_03 25:24

Yes. Yeah.

SPEAKER_01 25:25

Well, also, I love that you said that people were asking you what they could do, because I think now there's this narrative that we should never do that, right? Like, if if you have to ask, I don't want to put the mental energy towards telling you what I need, but sometimes that's better than nothing. And I feel like there's so many narratives out there right now that are almost making people like tiptoe around their friendships and their relationships that if you don't know how to help, I think it's okay to say, what can I do?

SPEAKER_02 25:52

Yes, I would rather you say, I don't know what to do, but I'm I'm letting you know that I have capacity to help you. Because otherwise, stressed out Jessica is gonna make a whole bunch of assumptions about the kind of you are. You know what I mean? Like, or be really resentful that you didn't show up for me, you know what I mean? Because I I would do the same for you. So yeah, that narrative it needs to go away. I think that like we've put so much of what people should and could or shouldn't do. And it's just like we're human, we don't have all the right language, we're not perfect, but deep down in our hearts, we want to show up for you. And it's okay if I don't have the the language, but I'm letting you know, right? And I'm and you might not know what you need, but now you know that I'm being genuine and saying I have the capacity. I'm and you, friend, have to follow through. Yeah. Just don't say it. But if you genuinely have it, loop back in a week and say, Have you thought about it? I'm still here, you know? That would be so much better for folks.

SPEAKER_00 26:54

And accepting the help. That's the bit like people will reach out to you, and you can. So many of us, millennial women, will be like, Oh, I'm not gonna take, I won't take the help. I can do this. I got this. Just take the help. Just do it. It's okay.

SPEAKER_02 27:09

Yes. And also release the control because it's not gonna be that you would probably want it, right? Maybe it's not what you would have necessarily gotten, but it's like it's so much bigger than those little things. It's actually like that thing is now off your plate. Thank you so much, you know?

SPEAKER_00 27:26

What you said about the language not being perfect, I feel like is so true with every aspect of life these days, because we're scrolling all the time and seeing, like, oh, you're not supposed to say this. Even I'll I'll write a work email and be and be like, sorry for the late reply. Oh, I'm not supposed to say that anymore. So thank you for your patience or whatever, like whatever the new thing I'm supposed to say is, and it's always like I'm doing it wrong, even though it's just genuinely what I want to say. And there, yeah, I think we're all just scared of saying or doing the wrong thing all the time.

SPEAKER_02 27:57

Yeah. I would rather use someone like completely fumble and like it come off as like kind of annoying than not do anything at all. Because I'd rather, I you know, that that that tells me it's just like breathe. You know, it's okay. Like, you don't have to be perfect because I'm surely not perfect. So, like, we're gonna figure this out together. And I feel like if we had that orientation for everything, we'd be much kinder people, actually. Yeah.

SPEAKER_01 28:23

Yeah. Yeah. Instead of this cutoff culture, this boundary-obsessed culture that we have. Have people ever told you that you just need to like set boundaries with your mom and not do so much and not be so involved in her care? Protect yourself, put yourself first.

SPEAKER_02 28:40

Ooh, you know, I see that from older caregivers, like talking down to me as a younger person, which is it's just the the generational differences are fascinating. And and and I think it's coming from a good place when I can like weed through the frustration at first, because what they're saying is like, you know, I cared for my person. I was 50 plus years old, I didn't prioritize myself, and now I have my own health issues. So they're trying to like sound the alarm, you know? But what they don't realize is that I have likely been caring for longer than they have, right? Like at 12 years now. Um, and so I actually have really strong habits and discipline to taking care of myself. But it's always interesting when they're like, Well, you're too young to be caring for a parent. Put her in a facility. You need to go live your life for you know, this is just that's just too heavy for you. Like you're still living your life. And it's like, yes, yes. But this is also a choice that I'm choosing to make. And, you know, my mom is very much still thriving because of the quality of care she's receiving. And this is this works for us, but it might not work for other people. So thank you, and we're okay, you know.

SPEAKER_00 29:48

I wonder if they would say that if your mom had cancer instead of Alzheimer's. I often think that.

SPEAKER_02 29:54

I think that about a lot of ways in which people talk to caregivers that are people living with dementia versus other terminal illnesses, especially like cancer. I think because so much is so invisible with dementia, especially Alzheimer's. It just gets lost. Yes. And so it's like, but I don't see her her mom suffering. She's not having any treatments, right? Right, like she still has her hair, right? Like all of the markers of things that like feel like they change for another patient, you don't really see with dementia. And so I think even with like support and like showing up for people who are grieving, you don't you don't see us as grievers, whereas like you see a caregiver of a pay a cancer patient like actively grieving in a very different way. And so you show up for them. You know what to do there. Uh but I think people are like, what do I do? How do I it's like the same thing. Yeah.

SPEAKER_00 30:43

And I have to say, it's really sad and disheartening. I I work with residents and trainees in the hospital, and when they're presenting to me, it's just so normal in the it's normal in the hospital to not even they'll give me a whole list of every single medical problem this person has, but not mention the dementia. And it'll come up like later in the conversation. And people, even doctors are not viewing dementia as a disease that needs to be listed in the past medical history, which is crazy to me, because it's the umbrella over everything. Everything. Like we can we can fix your heart and make your kidney numbers better and take some fluid from here. Nothing is going to fix the dementia, though. It's gonna get, it's gonna keep getting worse. And it's wild to me that even in the medical community still, we're just like there, that older person probably has dementia, and it may or may not be dementia, it may be something else. And we we're just so far away from where we need to be in understanding the disease and talking about the disease.

SPEAKER_02 31:45

Dr. Anita, Eunice, stand on the mountaintops and keep shying.

SPEAKER_01 31:51

Treat dementia patients like they're just a lost cause, yeah, right? Like not just kind of forget about them. Yes.

SPEAKER_02 31:57

Yes. It's the I'm still my my mom is still human. She can actually still hear everything that you're saying about her, still feels everything, right? And while it might not be that you have to do some sort of like life-saving measure on her, but she I mean, things are still changing and she's still declining and it's still hard, it's it's still an experience for the family caregiver, you know?

SPEAKER_00 32:18

Um I would say more, more so than her. Absolutely more so than her. And she doesn't ever have to understand. You don't ever have to convince your loved one that they have dementia, which I feel like I need to say all the time. You don't have to spend any energy convincing them that something is wrong. Because that's kind of part of the disease. Their brain, you you're not, we wouldn't be convincing someone's heart to work better or their, you know, lungs to breathe better. It's their brain isn't working. So, and and it's hard though, because their brain sometimes is what makes our loved ones who they are. So grappling with that, like, this isn't what my person looks like. So I need to make them shake them and be like, this isn't you. Don't you remember this? Don't you remember this? Like, that that's hard. I I feel it on both sides. Like it's really hard to not do that. And when we're caring for our person, we don't have to do that. We don't have to make them aware that something is wrong and they're not who they once were. That's good. Yeah.

SPEAKER_02 33:18

Bottle that up. Say that more.

SPEAKER_00 33:22

I would love to know what what did doctors tell you or didn't tell you that you wish you knew.

SPEAKER_02 33:29

That's good. I I really loved our neurologist before he retired. And the only reason I loved him is because he actually saw me as a human that was trying my very best as her as my mom's caregiver, right? So he would always ask me, like, How are you? How's Texas? You know, like, and and he would always affirm, like, you're doing such a good job, Jessica. And it's like, such simple things, but the bare minimum that we should all be doing. Yeah. Um, because I wasn't getting that from any other medical professional, you know, even my mom's PCP. But so anyway, I while he was great relational-wise, I wish in the land of Alzheimer's disease, he would have said, So let me tell you where you're going or where this is headed, at least just to understand. And I know some people like, don't tell me, like, I I, as a planner, I need to know so I can make some adjustments, you know, and it would have been helpful to know, like, hey, midway through, your mom actually might have some shifts in her mobility, right? Like, and we let's not let's talk about the physical changes you might experience. And so I just wish he would have given me like an overview of what to expect. But at the same time, you know, he we did start on medications early, and he was really clear about articulating how it was gonna be helpful and or harmful or like what we should be noticing. So that was helpful. Like being clear, not beating around the bush, telling me directly in the moment, that was really great. But I wish I knew what was coming. That was that's the biggest thing.

SPEAKER_00 34:55

I'm a big fan of pulling up the fast scale at the diagnosis because how would you know what to look? How do you know? How do you know if you don't know?

SPEAKER_02 35:03

You don't know. Honestly, if I if I didn't have a social media presence in 2022 to be like, my mom is doing this, what's happening? And like literal people who are SLPs and OTs online being like, oh, this is what's happening. And I was like, no one told me that, you know, and no family member should ever be learning what's coming with their person from a random friend in on social media, right? Who happens to be a PTOT or SLP? You know what I mean? Like, we actually should not people should not be leaning on Instagram for their knowledge to be able to advocate for their person better. Like, that's insane to me. But that's really what it comes down to.

SPEAKER_00 35:46

Jessica, do you ever talk to physicians and and do you do talks for medical people to hear this?

SPEAKER_02 35:52

Because you should they they need to hear, they need to hear more of our voices of people who are in it. Um, and so I haven't been booked to speak at hospitals yet, but I would love to because I just I feel like that's the gap of like, do you know the family caregiver experience the moment that you send them away, or like the moment that you give a diagnosis? Like, let me help bring this to life because I think that would shift how people show up for people in their appointments and things like that.

SPEAKER_01 36:19

Yeah. I saw that you shared something on social media about being the only black woman in a lot of spaces, and we're all three women of color in the care conversation and we're underrepresented in this conversation. And I would love to hear how that has affected your journey as a caregiver and also your mom's journey as a patient.

SPEAKER_02 36:40

Ooh, such a that's such a loaded question. It's so good. Um yeah, why did I post that? I post that I've I talk about that often, and I'll tell you why. It's because when I started this journey in 2014, I did not see, I did not see other young black folks talking about caregiving, let alone forms of dementia. And my only understanding of Alzheimer's was from Gray's Anatomy, right? Maredist's mom, you know, like because no one's talking about it. And I would go, people would be like, Well, have you connected to your local Alzheimer's Association? It's like, okay, cool. So I went and like got all my paperwork, and then, you know, here's our support group. You go to support group, you realize, oh, this is all middle-age and above older white people who are at the cusp of retiring to support their family member, white picket fence, you know. And I'm like, oh my gosh, I have to still work. You know, like I, I, I don't live with my mom. And so I don't even see people my age or my race in this space. I don't belong here, right? And so for so long at the beginning, it was like, I don't see myself. So do I, am I, is this a thing that I should be focusing on? Am I like the only one? And so that's why I started sharing so publicly because I was like, I can't be the only one, right? And the moment that I started sharing on social media, it opened up the doors to like thousands of women of color from around the world that are navigating forms of dementia, but especially Alzheimer's disease, that are having really similar experiences to me. And I was like, holy moly, like, why don't we know each other? So anyway, I share that because when it comes to navigating Alzheimer's disease, if you're not careful in our current society in 2026, you would think that this disease is like an old white person's disease. When we know that the data tells us that the black community is disproportionately impacted by Alzheimer's disease, yet we're not putting resources, support, illuminating our stories. And so I got stuck on a soapbox. But the point that I would want to make is we have to, if we want to talk thoughtfully about supporting caregivers and supporting communities, it cannot be a homogenous conversation. We've got to think about people's cultural experiences, their racial backgrounds, their ethnic backgrounds, why navigating the healthcare system is so difficult for some, why people are being faced with biases and stereotypes when talking to their doctors and levels of treatment. Like I've experienced all of that, and I'm one of millions experiencing that. Yet we're not, we are not seen in the stories, we're not seen and elevated as experts. And we're telling a narrative that's one-sided, and that's problematic. And so sometimes, yeah, I'm the only at a table, but I can guarantee you, whether I'm at a round table for brain health or at a community panel for Alzheimer's, I'm I'm very vocal about sharing my experience so people can build their perspective and empathy and understanding because that's missing still. And that's so problematic for lack of a better phrase.

SPEAKER_01 39:55

Yeah, aging in general as a person of color. I remember growing up, my parents would always say, we don't want to be in a nursing home, a retirement community, an assisted living facility, because nobody there will look like us. They won't serve the kind of food we're used to, and we will feel like complete outsiders. And I don't think I fully understood it until recently, but I've been in so many situations where I've taken a parent to a medical appointment and somebody has walked into the room and said, Do they speak English? My dad was a practicing cardiologist in the United States up until a few years ago, you know, and there's so much bias. And within our communities, there is so much stigma around so many health issues, especially dementia, that really they complicate everything. And I think that's why people of color are so underrepresented, right? Because they're hiding their diagnoses in many cases.

SPEAKER_00 40:49

Yeah. And they get diagnosed later for a variety of reasons. But yeah, that's a big problem too.

SPEAKER_02 40:57

And when you tack on dementia and being a person of color, it's like multiple strikes against you. Because I'll never forget going to my mom's primary care physician, and I'm being like, she has a pain. And I I and I documented for X number of, you know, weeks she's been experiencing this pain. And the PCP, who did not look like us, was like, oh, well, you know, dementia, they're they make things up. And you're like, no, I promise you, you know? And so here I am. I just flew in from Dallas. I'm only home for four days, right? Like, I've already done I've I've done my part, and I'm coming to you to ask you to believe me, to listen to me, and also to trust that my mom isn't making something up. And she just she sent us home. And the next day I go to the emergency room because the pain didn't stop. And the doctor was like, oh, let's do some imaging. And he was like, Oh, yeah, your mom has hernia. Let's schedule her for surgery. You know what I mean? You mean if I didn't come, what could have happened? You know what I mean? It's it's just, and I have a number of stories. People have a number of stories like that. It's like, uh, what about dementia? But then you I you wonder, like, okay, is it because we were black? You know, like I I will never know. But it's like the compounding and intercepting identities, and then you don't listen, you don't trust, you don't follow through, and you just kind of discard us. Like that happens time and time again. And so why would people continue to trust to keep showing up? Right. You continue to push us to the side, you know? And I'm I'm an Ivy League educated executive woman, and you still discarded us. Imagine if we were poor and looked the way that, you know, you assume poor people to look. What would happen? You know? Good man. Sorry. That's a soap.

SPEAKER_01 42:35

It's also validating to be in a space where people are not trying to tell you that it's not happening. Because that's that's a very real thing. Really?

SPEAKER_02 42:44

I don't know why I'm so surprised. I'm not surprised, but you're just like, that can't be true, but it's true.

SPEAKER_00 42:49

In our culture, we're really discouraged from talking about what's happening on a everything. Yeah, everything. Anything that's going on to each other out loud to other people, but it's so helpful.

SPEAKER_02 43:02

Mm-hmm. I think that's the thing that people that I when I speak to folks, I'm just like, but have you have you actually gone to have a conversation with this group of people or like this community or this family? Because so much, especially in the black community, it starts with relationship and just like building trust. And so you don't need some major campaign to bring people of color to, you know, to whatever you want them to. It's actually just like, have you gone to say hello? Have you gone to like build connections? Have you sent people that look like them into said community to understand that you're not a threat in your clinical trial or in your, you know, whatever it is? And I just I I feel like white people or people in power have overcomplicated in their minds what it looks like to build coalitions and relationships that then instead of doing it, they just don't do it at all. But it's like, that's wild. It's so simple. The solution, actually.

SPEAKER_00 44:05

If you could go back and talk to yourself the week your mom was diagnosed, what would you say to yourself?

SPEAKER_02 44:11

I would say you have a lot more time than you realize. I I could have never imagined 12 years, you know, let alone five. But you have a lot more time. And because you have time, slow down and enjoy the moments with your mom. Enjoy the moments, make new memories for you and for her. You don't have to be so intense in setting up systems and structures. I would also tell her to take time away from your job sooner. You didn't have to burn the candle at both ends. Or you don't have to burn the candle at both ends, Jessica. Take time away. Be more selfish here.

SPEAKER_01 44:48

What are some things you do for yourself?

SPEAKER_02 44:51

Ooh, great question. So I just started reformer Pilates, which is like so hard, uh, but it's a it's a new challenge. And I think that that kind of is an example of how I think about doing things for myself. It's like, how can I challenge my brain or my body in a new way? And Pilates is the new thing right now. Uh, I'm also a fitness instructor at the local YMCA. So I dance it out. It's like a hip-hop-based dance class twice a week with the ladies, which is just so much fun. Um, and allows me to teach and do something that's not about caregiving, but just about bringing joy through movement. I am a huge WNBA fan. And so I love going to basketball games and watching games. It's something that my mom and I did when she was still able to go. And so it's a piece of honoring her, but also decompression for me. The free stuff is like literally going for a walk. 20 minutes will do wonders. I get up early and sit on the porch and listen to the birds and drink my morning tea or have breakfast. I love a good Netflix binge. Okay. Uh so it's a mix of easy, easy low-lift things, but also like really disciplined like routines in my schedule that I focus on. And I'm really dogged about not missing the things for Jessica.

SPEAKER_00 46:08

We talk a lot about how it's kind of difficult to plan vacations, be on vacation, just not knowing what's gonna happen or worrying about what's happening at home. How do you deal with that?

SPEAKER_02 46:20

Woo! Yeah, that was a deep sigh of I've learned some hard lessons and some things have happened. You know, I think I think the first is like you have to listen to your instinct and like trust your gut. And every time when I did not listen to myself is when something bad happened. And so there, I I don't say that to scare people, but like that's that's that's like that's that's only been twice in the 12 years. Every other time I've been able to set up systems and routines and hire people to be here so that I can be completely off. And I think that I I'm a huge advocate of like you, it is going to take work and money on the front end. But if you spend the time prepping and you have the right people in your corner, you should absolutely put that phone on do not disturb and don't feel any like feeling about it. You know what I mean? And as and I said this before, is like as long as you've done what you can to set people up, to train people properly, to give them what they need, you can't control if something does happen and you can't beat yourself up because it might have happened whether you were there or not. So that's always my philosophy. And then the part two is listen to your instinct. If your instinct is saying you need to stay, I often you should listen to it. Because the time that I didn't, my mom, my mom fell with the caregiver because they sent an ill-equipped person who didn't know my mom. Um, had to call the fire department, house was disheveled. It was like it was awful. And then the other time was when uh gosh, my mom was basically kidnapped by a caregiver. Like kidnapped, meaning taken away from the home. I didn't know where they were for multiple hours. She was obviously brought back, but I wasn't here. I was in Texas. Um and then a different trip. I was in Mexico and the caregiver didn't show up. And I was like, oh no. And I called the agents and he didn't have a backup. So like those moments don't happen all the time, but you need to be prepared for them. At the same time, right? Like things are gonna happen and you're not gonna have any control over it. But you have control over how you react, and the emergency numbers in your phone and your village around you is who you lean on.

SPEAKER_00 48:22

We talk about the mental load of other things all the time, but this is the stuff no one thinks about. No one you just said so many things that I'm sure nobody thinks about, like that you had to plan and think about so many contingencies and plan B, C, D, in case something happens, just to go on a vacation. That's no one's thinking about that.

SPEAKER_02 48:43

Yes. The amount of thinking for to prepare and then to be gone and then the post post-vacation and catching.

SPEAKER_03 48:51

Yeah.

SPEAKER_00 48:53

Yep. Yep. Yeah, it's a lot. And you're doing amazing. I'm sure you know that, but it never hurts to it never hurts to hear it.

SPEAKER_02 49:00

Affirmations matter, yes. Yeah. Because I do think that there are times when you're like, am I, am I doing the right thing? Am I doing enough? Like, am I on track? You know, it's I I I encourage anyone who's listening, whether you're a caregiver or not, or people who, you know, love, if you love a caregiver, it's like never shy away from just saying, thank you for caring for your person, or you're doing a great job, or I admire this about you, because I can guarantee you a caregiver is thinking all the negative thoughts. And so insert something positive to help stop that loop, you know?

SPEAKER_01 49:35

Mm-hmm. What's your millennial sandwich survival tip? A survival tip that you would share with anybody who is in any type of caregiving role.

SPEAKER_02 49:44

Ooh, survival tip. Yeah, put your oxygen mask on first. I think I was conditioned, and we all were, in a sense, in our generation, to like by any means necessary, do whatever it takes to make something better, to achieve, to help. And that when you translate to caregiving of any sort, you end up self-sacrificing so much that you end up dwindling away. And I think putting your oxygen mask on first will allow you to be able to show up well for whomever you're caring for. And that oxygen mask could literally be like who is my village? Who is around me? What financial supports do I need? What do I need to say no to? What I need to say yes to. Really focus on yourself first. That's your survival tip.

SPEAKER_00 50:32

And I have to say, I think you're already doing so much and going through so much, and it's amazing that you have taken the time and effort to share your experience with the world, and you're helping so many people. I just want to say thank you.

SPEAKER_02 50:48

Oh, thank you. It's been it's been a journey, and I'm grateful for the community that I've gotten from sharing. So it's almost like mutual in the sense of like I feel so seen and connected, and then people feel so seen and connected because I share. And it's I'm so grateful. So thank you for seeing that.

SPEAKER_00 51:06

Yeah. Thanks for chatting with us.

SPEAKER_02 51:08

Thank you all so much. I appreciate it. This was a great conversation.

SPEAKER_01 51:13

Thank you for listening to the Millennial Sandwich. Don't forget to like, subscribe, give us a rating, and connect with us on social media.