BrainStorm
Promoted and Caregiving - The Reality Young Professionals Don't Talk About
Promoted and Caregiving - The Reality Young Professionals Don't Talk About
What happens when your carefully mapped career path collides with an Alzheimer's diagnosis — and you're only 26? In this deeply personal episode of BrainStorm by UsAgainstAlzheimer’s, host Meryl Comer sits down with Jessica Guthrie, founder of the online platform Career and Caregiving Collide, whose life changed forever when her mother was diagnosed with early-onset Alzheimer's in 2014.
Jessica shares what it means to be a young Black professional thrust into the role of long-distance caregiver — navigating a healthcare system that often didn't listen, workplaces that weren't designed with caregivers in mind, and support spaces where she was frequently the youngest and only Black person in the room. Rather than suffering in silence, she turned her experience into a growing online community where caregivers across generations find connection, validation, and practical wisdom.
Meryl and Jessica unpack the hidden barriers facing Black families seeking an Alzheimer's diagnosis, the toll caregiving takes on career ambitions and financial security, and why the people who show up at diagnosis often disappear years down the road.
This is conversation for anyone who has ever had to choose between their dreams and their family.
BRAINSTORM, EP #104
GUEST: JESSICA GUTHRIE
00:00:00:00 - 00:00:27:26
Jessica C. Guthrie, M.Ed.
The things that resonate the most are one. Sharing the challenges of navigating our health care system. Right now, I don't care what color, race, creed, age you are. Everyone has struggled trying to navigate and advocate for their person when it comes to hospital systems doctors, specialists. All of that is a is a common thread. I think the second thing is this sense of loneliness.
00:00:27:28 - 00:00:47:19
Narrator
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver, and Emmy Award winning journalist and the author of the New York Times bestseller Slow Dancing with a Stranger.
00:00:47:21 - 00:01:26:28
Meryl Comer
This is BrainStorm and I'm Meryl Comer. Today we focus on the silent backbone of Alzheimer's care in America. Two thirds of the 11 million family members who provide unpaid care are women. For the African-American community, the issue of caregiving concerns extends to the brain drain of talent and potential among young black professionals, whose families often face systemic barriers to early diagnosis, specialized Alzheimer's memory care, and culturally appropriate care support.
00:01:27:00 - 00:01:55:00
Meryl Comer
Our guest today is Jessica Guthrie with a master's of education degree, who is dedicated to reshaping support and access through her innovative online platform. Career and caregiving. Collide. Welcome, Jessica. It's great to have you. I was on your site and loved your line. We need someone who's lived it, not just studied it. What's that about?
00:01:55:02 - 00:02:19:01
Jessica C. Guthrie, M.Ed.
Yeah. So I have been my mother's caregiver for the last 11 years while she's been living with Alzheimer's disease. She was diagnosed in 2014 at the age of 65, and I was 26 years old. And so I've been a caregiver a long time. And one of the things that I have noticed is that when I go to conferences or watch panels or see experts, they're often people who have studied it.
00:02:19:04 - 00:02:50:06
Jessica C. Guthrie, M.Ed.
But rarely do I see, family caregivers elevated as experts, family caregivers, given the space to be able to share their wisdom and knowledge. And so that line of we need someone who's lived it, not just studied it is very much how I've been leading in this space. As someone who has been a caregiver for over a decade that cares about changing systems and policies and environments for family caregivers that are coming up after me.
00:02:50:09 - 00:03:02:13
Meryl Comer
So, Jessica, at age 26, where were you in your personal life, career, and by the way, give you added credit? You were long distance, so that got even harder.
00:03:02:19 - 00:03:26:14
Jessica C. Guthrie, M.Ed.
Yes, I was living a young adult life, making friends, building my career. And my mom was living in Virginia. I was an only child, and I was only really flying home for holidays. But at 26, I started to notice during those times when I was home for holidays that something was off with my mom, but I would still hop on the plane and go back to Texas.
00:03:26:16 - 00:03:51:21
Jessica C. Guthrie, M.Ed.
It got to the point where I was like, I need to ask some harder questions, and I need to bring in some support for my mom. And so I'm getting ahead of myself. To answer your question, at 26, I was a very driven, clear eyed, goal oriented person. In terms of my career. And when I went where I wanted to be, I had no idea that I would become a caregiver.
00:03:51:23 - 00:03:57:02
Jessica C. Guthrie, M.Ed.
In the midst of my dreams and aspirations and vision boards.
00:03:57:04 - 00:04:06:18
Meryl Comer
What were the earliest signs that something was wrong that you only recognize now in hindsight, because you're commuting back and forth, right?
00:04:06:25 - 00:04:29:00
Jessica C. Guthrie, M.Ed.
Yes. So I would I would fly home to Virginia and I would spend, you know, about three days and then fly back home to Texas. And when I was home in Virginia, my mom was an educator. My mom worked for the local school district. My mom was very routine. And so, you know, things like she woke up at the same time every day.
00:04:29:00 - 00:04:52:14
Jessica C. Guthrie, M.Ed.
There was really no change in her routine. But I started to notice things like the repeating of her questions or, you know, the loss of simple things, like her bag always went in the same place and she was no longer placing it in the same place. But those are things we often talk about. But you would start to, be concerned about what people were saying or thinking about her.
00:04:52:16 - 00:05:21:25
Jessica C. Guthrie, M.Ed.
And or, you know, afraid to do things, which was not like my mom. My mom was starting to become more afraid of, like, going out and being in public and or driving. My mom would say that she ate, or remember or thought that she ate, but she wasn't eating. And so, like, I started to see these, like, small things happen in addition to their questions, and they're repeating herself and that led me to say, I think I need to talk to her primary care physician.
00:05:21:27 - 00:05:30:02
Jessica C. Guthrie, M.Ed.
Luckily for us, my uncle was a doctor, and he was able to point me in the right direction to be able to move in those next steps.
00:05:30:09 - 00:05:47:25
Meryl Comer
Let me ask you another question, because mother daughter relationships are always dynamic, and challenging at some times. Was there anything that you saw in your personal relationship that was off as well?
00:05:47:28 - 00:06:11:20
Jessica C. Guthrie, M.Ed.
You know, I'm an only child and she was a single mom. We, I and we were very much the Guthrie girls okay. We were the, we were the duo where she would, we would wear like matching outfit to the airport. Okay. So we've always been close. And so I didn't in the moment realize things were changing because I just kind of hopped into what I always experience from my mom.
00:06:11:24 - 00:06:35:17
Jessica C. Guthrie, M.Ed.
My mom is someone who sacrificed so much to ensure that I had the best education opportunities experiences possible. My mom gave up her business to build this home in suburban Virginia. Like my my mom was always there and always so present, and so it was so easy for me to be there and be present and just figure it out, because that's what I grew up witnessing.
00:06:35:20 - 00:06:57:22
Jessica C. Guthrie, M.Ed.
And so when it came to our relationship, I think in the beginning it was, I do what I have to do to protect my mom's image. I'm doing what I have to do to protect her dignity, to make sure she is still seen as Constance Guthrie. Right. This bold, you know, visionary that's a leader in her community.
00:06:57:28 - 00:07:32:21
Jessica C. Guthrie, M.Ed.
And so I feel like I didn't realize things were different in our relationship until it was a moment where I was like, oh, my mom doesn't remember my birthday. My mom no longer remembers holidays. When you watch your person lose the things that have always been so connected to who we were. That was like the biggest heartache for me or heartbreak for me, because it was like, okay, things really are different and they're not going to go back to being what they used to be.
00:07:32:23 - 00:07:43:09
Meryl Comer
Do you feel your caregiving role gives you, a unique perspective that others your age might not have? And how has that shaped your goals right now?
00:07:43:11 - 00:08:17:06
Jessica C. Guthrie, M.Ed.
I think when you now become responsible for someone else, my perspective has shifted. My my patience has grown. My ability to operate with empathy and curiosity like that has expanded so much because I recognized for myself. I know I'm carrying so much. I believe that everyone is carrying something, and so I very much operate in a world where I give people more grace, I give people space because I recognize how difficult life might be behind the scenes.
00:08:17:06 - 00:08:41:01
Jessica C. Guthrie, M.Ed.
Right. I would also say, you know, I was so success driven. And my markers of success when I was 26 were like, how quickly can I be promoted? What role can I have, what accolade, what opportunity? And I mean, and I'm I'm proud to say that, you know, I kept my job while caregiving. And so I achieved so many, you know, milestones which I'm proud of.
00:08:41:01 - 00:08:54:00
Jessica C. Guthrie, M.Ed.
But I can tell you now, 11 years in, those things don't matter. You know, like, you know, my success and achievement to me is honestly, I did I did I treat my mom today with dignity and respect.
00:08:54:06 - 00:09:17:04
Meryl Comer
You've, focused on building this online, channel across social media. With career and caregiving collide. You know, it's that intersection where you had all those ambitions and were very successful. And caregiving responsibilities.
00:09:17:06 - 00:09:46:11
Jessica C. Guthrie, M.Ed.
So I initially started sharing on social media because I was a young black professional and I did not see other people who were caring for their parents at 26, like visibly caring, right? I also didn't see people talking about forms of dementia at 26. And so, you know, I would I when I would tell people that my mom was now navigating Alzheimer's, I'm like, oh, we'll go to this support group or go to this local thing.
00:09:46:11 - 00:10:04:20
Jessica C. Guthrie, M.Ed.
And, you know, any, any pamphlet, any newsletter I got, I would read it and I would go and try and I would react when I, when I would get there. I always felt so isolated, because I was the youngest person in the room, and I was often the only black person in the room. Right. And so I was like, I need to create this space.
00:10:04:20 - 00:10:30:27
Jessica C. Guthrie, M.Ed.
And I need and I want to be able to share my story to find other people who are doing the same thing. So that was the impetus of me sharing, when career and caregiving collide on social media. And little did I know, I know, you know, I find other young black women. I found people around the world who were navigating early onset Alzheimer's disease, other forms of dementia that were navigating similar problems and frustrations and challenges.
00:10:30:27 - 00:10:54:18
Jessica C. Guthrie, M.Ed.
And it's become this community where people feel seen, affirmed and just valued for the work that they're doing as a caregiver and that it's I mean, it's it's way bigger than I could have ever imagined. At first, it was a place for me just to kind of vent and share my reality. And now it's become a place where people look to me for, you know, affirmation and validation and support, which is just a privilege.
00:10:54:20 - 00:11:06:29
Meryl Comer
So, Jessica, what issues resonate most closely with your followers? Because the page that you need in that moment in time is always missing, right?
00:11:07:01 - 00:11:34:06
Jessica C. Guthrie, M.Ed.
We have everything from, you know, Gen Z and millennial caregivers. We've got folks who are Gen X, and then we've got older folks who are like, who have gone through the journey and are still wanting to be connected. You know, and or share their lessons. And so it's a, it's a wonderful spectrum of folks. But I would say regardless of age, regardless of experience, the things that resonate the most are one, sharing the challenges of navigating our health care system.
00:11:34:08 - 00:12:01:12
Jessica C. Guthrie, M.Ed.
Right? I don't care what color, race, creed, age you are. Everyone has struggled trying to navigate and advocate for their person when it comes to hospital systems. Doctors, specialists, right? Understanding home health, palliative care, hospice, all of that is, is a common thread. I think the second thing is this sense of, loneliness that resonates so much.
00:12:01:12 - 00:12:18:21
Jessica C. Guthrie, M.Ed.
And it's not like, oh, I'm alone. It's, no one understands what happens at 3 a.m., right? Or like, no one understands or like we don't talk enough about the fact that, like, you wonder, am I good enough? Did I do the right things for my person today? Right? Are there other things I should be thinking of?
00:12:18:21 - 00:12:29:11
Jessica C. Guthrie, M.Ed.
You know, so I try to illuminate those, you know, behind the curtain thoughts, because that's what people really need. Because you don't get that in any other place.
00:12:29:18 - 00:12:55:00
Meryl Comer
You know, I think you make a critical point. I've always felt that caregivers are the keeper of the secret because you're protecting a loved one's dignity and doing all these things and then glossing over it or not mentioning it to protect them as well. What barriers, realities did you, uncover that are not fully understood in the Alzheimer's conversation?
00:12:55:03 - 00:12:56:27
Meryl Comer
Oh.
00:12:57:00 - 00:13:06:23
Jessica C. Guthrie, M.Ed.
You know, this this surprised me. But you realize a lot of medical professionals don't understand dementia.
00:13:06:26 - 00:13:28:25
Jessica C. Guthrie, M.Ed.
And I love your big general statement, but, like, you know, you go and you realize, like, oh, my primary care physician doesn't know about this. I actually need to go to a neurologist or, you know, you not you enter through the hospital system and you realize, like, we're I'm not being listened to. We're not being believed. I need to I need someone else.
00:13:28:26 - 00:13:54:07
Jessica C. Guthrie, M.Ed.
Right. And so, that was the greatest shock, which I became one of my greatest barriers is like navigating almost a humans that didn't understand the disease. To get to what I needed. I think another barrier, honestly, is you don't know what you don't know. We hear that all the time, but it's like. It feels like there's so much that's gate kept in healthcare.
00:13:54:14 - 00:14:23:06
Jessica C. Guthrie, M.Ed.
And so I share this in a sense of one of the greatest barriers is like a lack of knowledge of knowing what exists to help you navigate this journey. And then, you know, I will say the third is just like, it's not even a barrier, but it's a it's a realization that I had was how quickly people walk away or how quickly people, are hard to find when you're navigating a long haul.
00:14:23:06 - 00:14:44:27
Jessica C. Guthrie, M.Ed.
Diseases like Alzheimer's. The folks were there for the diagnosis. They're there when a crisis happens. But like, you know, we're in a year 11, and the folks that were around 11 years ago are nowhere to be found today. And you, you you realize how, you have to cultivate a new sense of community to support yourself through this?
00:14:45:00 - 00:14:49:19
Jessica C. Guthrie, M.Ed.
And it's not going to be the people that you thought they were going to be at the beginning of this journey.
00:14:49:22 - 00:15:20:01
Meryl Comer
So your spirit is full of sunshine, but I'm sure that there has to be some anxiety among young professionals. You know, you're forced to cut back on work hours, decline promotions, leave the workplace altogether, sacrifice ambitions, earnings, retirement, security as well to meet the needs. Because you never know how long this journey might be. Do you get that type of feedback as well?
00:15:20:03 - 00:15:23:17
Jessica C. Guthrie, M.Ed.
Maria. Yes. Yeah.
00:15:23:20 - 00:15:25:05
Meryl Comer
Scarring.
00:15:25:07 - 00:15:50:06
Jessica C. Guthrie, M.Ed.
Yes. You know, come up. I often say I was only able to be the caregiver that I was because of my work environment. And so I was really privileged to have supportive managers and leaders and colleagues. I worked for a place that had you know, unlimited PTO and a paid FMLA policy or paid family leave policy.
00:15:50:09 - 00:16:11:25
Jessica C. Guthrie, M.Ed.
But when I share that, I often hear people say like, must be nice or I don't have that, or like, I just had to leave my job. And, you know, that's a reality for the majority of family caregivers who are really trying to still hold on to their jobs, show up for their family members, and realize they don't have support systems in their work environment.
00:16:11:25 - 00:16:42:07
Jessica C. Guthrie, M.Ed.
Right. And that's a fundamental flaw in our current system. And I really wish that workplaces, companies, organizations saw themselves as critical pieces in their employees care journeys. Right. Your employer can make or break this experience for you. I'm preaching to the choir. You know this. I would say it's a huge issue. And I am someone in 2023 who also chose to leave my job.
00:16:42:09 - 00:16:53:10
Jessica C. Guthrie, M.Ed.
And it wasn't because of lack of support, but it's because I was faced with this feeling of like, I'm doing all this work to pay for care, yet I'm not there with my mom. Like, consistently.
00:16:53:14 - 00:17:11:24
Meryl Comer
What else are employers and institutions getting wrong? Especially around young givers? You know, it's not somebody in their 50s. The classic is 40 to 65 for a caregiver, but it's the young ones that I'm particularly concerned about.
00:17:11:27 - 00:17:39:13
Jessica C. Guthrie, M.Ed.
I really do think employers have to be thoughtful about who are you putting in manager positions, and are we equipping them with the skills to be empathetic, to meet their employees where they are? So many, I would say my friends who are millennials and Gen Z are coming to work sometimes afraid to tell their manager that they might be a caregiver for the for the fact that they might no longer be, you know, considered for opportunities, promotions.
00:17:39:13 - 00:18:03:25
Jessica C. Guthrie, M.Ed.
And so how do you create environments where people can feel comfortable sharing, but also acknowledge that it's just because I'm sharing something with you doesn't mean that I'm not capable. Which leads me to my third point. There's a huge, what's the word assumption that because someone might be a carer, especially a younger carer, they don't have the ability to now show up?
00:18:03:25 - 00:18:31:21
Jessica C. Guthrie, M.Ed.
Well at work? And what they need is not less opportunities. They need understanding, supportive work environment. They can thrive in both places because they are able to multitask. They're strategic thinkers. They they think quickly on their feet. Right. They're able to actually pull pieces together and set a clear vision and clear goals like you want those people. But too often, because the environment is not conducive, they don't feel supported enough to stay.
00:18:31:24 - 00:19:05:02
Meryl Comer
I'm also very concerned in the inner city reality that many frontline caregivers are in their teens because they've been raised by their grandparents. So what advice do you give educators to better recognize and support students because they're embarrassed by the situation? You know, how emotionally charged and difficult it is. So you have to be careful that their experiences aren't misread as truancy or disengagement.
00:19:05:04 - 00:19:13:27
Meryl Comer
It's a very tricky space, but it's part of your generational issues that I think are so critical.
00:19:13:29 - 00:19:37:00
Jessica C. Guthrie, M.Ed.
As a former educator, I taught high school. And one thing I learned very early on was that it is important for me as the teacher and the leader of that space, to make sure that my students knew that I, I saw them creating space for kids to talk will give you insight in ways that you would never get if you didn't take the time.
00:19:37:00 - 00:20:00:24
Jessica C. Guthrie, M.Ed.
And so one educators, slow down, right? Just if you see a student that's disconnected or exhausted, don't assume the worst actually. Like give them the space to share with you because too many young folks are carrying this burden and not knowing how to ask for help, not knowing who to go to for what, and what also exists for them to be able to show up well as a student and a caregiver.
00:20:00:27 - 00:20:18:17
Meryl Comer
Let me ask you, because stigma is always such an issue, especially, when a loved one is younger as well. Are there cultural differences and stigma? In the black community?
00:20:18:19 - 00:20:45:21
Jessica C. Guthrie, M.Ed.
Yes, there are. And I you know, I'm I'm really careful about trying not to generalize because everyone is different. But what I do know is that from my experience, when when I was growing up, we never really talked about Alzheimer's as a disease. We all just kind of, like, swept under the rug. It's like, oh, that that person just has a little issue with their memory, right?
00:20:45:21 - 00:21:24:06
Jessica C. Guthrie, M.Ed.
Like, oh, we're just going to push them over here. Which leads to which you can already see leads to getting to the doctor too late, not getting an early enough diagnosis, not being able to navigate the use of medications. And so that happened beyond my own family experience. I see it all the time within our community. I also think that in addition to the stigma, there's also the barriers of when you do notice something or when families do notice that like maybe their person is having some short term memory issues and they go to their provider and the provider just assumes it's something else, or doesn't listen to them, or their provider is navigating
00:21:24:06 - 00:21:48:04
Jessica C. Guthrie, M.Ed.
a set of stereotypes and assumptions and doesn't give them the space to move into the process. And so we're not just fighting our lack of understanding and education within a community. I believe that, we're also navigating biases and stereotypes and assumptions when we get to the medical system, which almost creates like a double edged sword. In getting a fair and early enough diagnosis.
00:21:48:07 - 00:22:01:05
Meryl Comer
And you also brought up the fact that most care caregivers feel that they're treated as invisible when we're on the frontlines of the care and we know the detail, but no one bothers to ask.
00:22:01:07 - 00:22:02:24
Jessica C. Guthrie, M.Ed.
Yes, yes.
00:22:02:26 - 00:22:15:22
Meryl Comer
The church is so central to, your community. What do you say to the clergy and how they treat people? Because this is a long journey.
00:22:15:27 - 00:22:53:19
Jessica C. Guthrie, M.Ed.
Oh my goodness. I laughed when you said the church because I'm just. I'm. My experience is nothing like I ever imagined it would be. With our relationship with our church navigating to your point, 11 years of Alzheimer's disease and so maybe my message to all clergy, regardless of denomination, is just to when when your person or when that family starts coming to services, when they're no longer able to, like, be involved, make sure that you still check in on them.
00:22:53:19 - 00:23:14:19
Jessica C. Guthrie, M.Ed.
You still come to visit, right? You even if you can't come visit. How are you finding ways to check in and check in on the caregiver? Right? I can tell you that I haven't seen our, you know, church pastor. I've only seen them come to our home twice in the 11 years that my mom has been navigating this.
00:23:14:24 - 00:23:35:00
Meryl Comer
I was always, not touch, but amused when people said, oh, make sure you take good care of yourself. And I thought, yeah, I don't think you really know what's going on at home. How do you manage that? And what advice do you give online?
00:23:35:03 - 00:23:49:01
Jessica C. Guthrie, M.Ed.
So in 2020, I thought I was having a heart attack. I was burning the candle at both ends. I was, you know, flying back and forth, but I was also home with my mom. And I realized in that moment I was like, if something happens to me, there's going to be no one here to care for my mom.
00:23:49:04 - 00:24:03:05
Jessica C. Guthrie, M.Ed.
It was not a heart attack. It was an anxiety attack because I was doing too much and I was too stressed as a family caregiver. And it was that moment in 2020, September 2020, when I became more disciplined about my own, well-being.
00:24:03:08 - 00:24:28:25
Meryl Comer
I'm sorry to hear that. You are now in hospice care for your mom. That's always a very difficult. It's all difficult. Let's be honest. It's all challenging. But that's really, emotionally very, very draining as well. How does it feel not to have guilt?
00:24:28:27 - 00:24:51:24
Jessica C. Guthrie, M.Ed.
I learned very quickly the moment that I put it on hospice the first time, it was May 16th, 2022, and I thought she only had like six months to live. It is now 2026, folks. Okay, so my mom is still here, but we're back on hospice and this time not getting off. But I learned quickly that my mom benefited the most from me slowing down and getting present.
00:24:51:24 - 00:25:25:02
Jessica C. Guthrie, M.Ed.
And proximate. And it is in those moments where I was able to see her smile in a different way. I was able to see her, like, feel soothed and like, connected through music. I was able to see that my mom truly just wanted me to sit next to her bed and hold her hand. And so I don't have guilt because I know that, like, I have truly quieted the noise around us and really poured into my mom in ways that meant the most to her and ultimately have meant the most to me.
00:25:25:09 - 00:25:41:03
Meryl Comer
You're online and people can access you wherever you are. How do we support that change? Because that becomes pivotal for your generation and the most meaningful.
00:25:41:05 - 00:26:10:16
Jessica C. Guthrie, M.Ed.
You know, I think the greatest way to support family caregivers and to support just like what is happening in terms of the evolution of who is caring and the technology that we use is just continuing to be open about what it means to be a caregiver, what it means to care for people living with Alzheimer's disease, and use our stories as places of connection and places of of, of of expertise.
00:26:10:16 - 00:26:31:06
Jessica C. Guthrie, M.Ed.
But also like, normalize. And you don't have to have all the answers. You don't have to like, you don't have to suffer alone. And in fact, there's a community of folks who are sharing their stories and, and, and, and navigating this with you. And so I think I think that's honestly the recipe even as we move forward.
00:26:31:10 - 00:27:03:25
Meryl Comer
I'm sure your mother would be very proud of you, Jessica. You know, she is our guest today is Jessica Guthrie. Her master's of education is involved in administration and leadership. And we know you've got that point. Yeah. So check out her innovative online platform. Career and Caregiving Collide. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
00:27:03:27 - 00:27:12:25
Narrator
Subscribe to BrainStorm through your favorite podcast platform and join us for new episodes on the first and third Tuesday of every month.
About This Episode
What happens when your carefully mapped career path collides with an Alzheimer's diagnosis — and you're only 26? In this deeply personal episode of BrainStorm by UsAgainstAlzheimer’s, host Meryl Comer sits down with Jessica Guthrie, founder of the online platform Career and Caregiving Collide, whose life changed forever when her mother was diagnosed with early-onset Alzheimer's in 2014.
Jessica shares what it means to be a young Black professional thrust into the role of long-distance caregiver — navigating a healthcare system that often didn't listen, workplaces that weren't designed with caregivers in mind, and support spaces where she was frequently the youngest and only Black person in the room. Rather than suffering in silence, she turned her experience into a growing online community where caregivers across generations find connection, validation, and practical wisdom.
Meryl and Jessica unpack the hidden barriers facing Black families seeking an Alzheimer's diagnosis, the toll caregiving takes on career ambitions and financial security, and why the people who show up at diagnosis often disappear years down the road.
This is conversation for anyone who has ever had to choose between their dreams and their family.
Transcript
BRAINSTORM, EP #104
GUEST: JESSICA GUTHRIE
00:00:00:00 - 00:00:27:26
Jessica C. Guthrie, M.Ed.
The things that resonate the most are one. Sharing the challenges of navigating our health care system. Right now, I don't care what color, race, creed, age you are. Everyone has struggled trying to navigate and advocate for their person when it comes to hospital systems doctors, specialists. All of that is a is a common thread. I think the second thing is this sense of loneliness.
00:00:27:28 - 00:00:47:19
Narrator
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver, and Emmy Award winning journalist and the author of the New York Times bestseller Slow Dancing with a Stranger.
00:00:47:21 - 00:01:26:28
Meryl Comer
This is BrainStorm and I'm Meryl Comer. Today we focus on the silent backbone of Alzheimer's care in America. Two thirds of the 11 million family members who provide unpaid care are women. For the African-American community, the issue of caregiving concerns extends to the brain drain of talent and potential among young black professionals, whose families often face systemic barriers to early diagnosis, specialized Alzheimer's memory care, and culturally appropriate care support.
00:01:27:00 - 00:01:55:00
Meryl Comer
Our guest today is Jessica Guthrie with a master's of education degree, who is dedicated to reshaping support and access through her innovative online platform. Career and caregiving. Collide. Welcome, Jessica. It's great to have you. I was on your site and loved your line. We need someone who's lived it, not just studied it. What's that about?
00:01:55:02 - 00:02:19:01
Jessica C. Guthrie, M.Ed.
Yeah. So I have been my mother's caregiver for the last 11 years while she's been living with Alzheimer's disease. She was diagnosed in 2014 at the age of 65, and I was 26 years old. And so I've been a caregiver a long time. And one of the things that I have noticed is that when I go to conferences or watch panels or see experts, they're often people who have studied it.
00:02:19:04 - 00:02:50:06
Jessica C. Guthrie, M.Ed.
But rarely do I see, family caregivers elevated as experts, family caregivers, given the space to be able to share their wisdom and knowledge. And so that line of we need someone who's lived it, not just studied it is very much how I've been leading in this space. As someone who has been a caregiver for over a decade that cares about changing systems and policies and environments for family caregivers that are coming up after me.
00:02:50:09 - 00:03:02:13
Meryl Comer
So, Jessica, at age 26, where were you in your personal life, career, and by the way, give you added credit? You were long distance, so that got even harder.
00:03:02:19 - 00:03:26:14
Jessica C. Guthrie, M.Ed.
Yes, I was living a young adult life, making friends, building my career. And my mom was living in Virginia. I was an only child, and I was only really flying home for holidays. But at 26, I started to notice during those times when I was home for holidays that something was off with my mom, but I would still hop on the plane and go back to Texas.
00:03:26:16 - 00:03:51:21
Jessica C. Guthrie, M.Ed.
It got to the point where I was like, I need to ask some harder questions, and I need to bring in some support for my mom. And so I'm getting ahead of myself. To answer your question, at 26, I was a very driven, clear eyed, goal oriented person. In terms of my career. And when I went where I wanted to be, I had no idea that I would become a caregiver.
00:03:51:23 - 00:03:57:02
Jessica C. Guthrie, M.Ed.
In the midst of my dreams and aspirations and vision boards.
00:03:57:04 - 00:04:06:18
Meryl Comer
What were the earliest signs that something was wrong that you only recognize now in hindsight, because you're commuting back and forth, right?
00:04:06:25 - 00:04:29:00
Jessica C. Guthrie, M.Ed.
Yes. So I would I would fly home to Virginia and I would spend, you know, about three days and then fly back home to Texas. And when I was home in Virginia, my mom was an educator. My mom worked for the local school district. My mom was very routine. And so, you know, things like she woke up at the same time every day.
00:04:29:00 - 00:04:52:14
Jessica C. Guthrie, M.Ed.
There was really no change in her routine. But I started to notice things like the repeating of her questions or, you know, the loss of simple things, like her bag always went in the same place and she was no longer placing it in the same place. But those are things we often talk about. But you would start to, be concerned about what people were saying or thinking about her.
00:04:52:16 - 00:05:21:25
Jessica C. Guthrie, M.Ed.
And or, you know, afraid to do things, which was not like my mom. My mom was starting to become more afraid of, like, going out and being in public and or driving. My mom would say that she ate, or remember or thought that she ate, but she wasn't eating. And so, like, I started to see these, like, small things happen in addition to their questions, and they're repeating herself and that led me to say, I think I need to talk to her primary care physician.
00:05:21:27 - 00:05:30:02
Jessica C. Guthrie, M.Ed.
Luckily for us, my uncle was a doctor, and he was able to point me in the right direction to be able to move in those next steps.
00:05:30:09 - 00:05:47:25
Meryl Comer
Let me ask you another question, because mother daughter relationships are always dynamic, and challenging at some times. Was there anything that you saw in your personal relationship that was off as well?
00:05:47:28 - 00:06:11:20
Jessica C. Guthrie, M.Ed.
You know, I'm an only child and she was a single mom. We, I and we were very much the Guthrie girls okay. We were the, we were the duo where she would, we would wear like matching outfit to the airport. Okay. So we've always been close. And so I didn't in the moment realize things were changing because I just kind of hopped into what I always experience from my mom.
00:06:11:24 - 00:06:35:17
Jessica C. Guthrie, M.Ed.
My mom is someone who sacrificed so much to ensure that I had the best education opportunities experiences possible. My mom gave up her business to build this home in suburban Virginia. Like my my mom was always there and always so present, and so it was so easy for me to be there and be present and just figure it out, because that's what I grew up witnessing.
00:06:35:20 - 00:06:57:22
Jessica C. Guthrie, M.Ed.
And so when it came to our relationship, I think in the beginning it was, I do what I have to do to protect my mom's image. I'm doing what I have to do to protect her dignity, to make sure she is still seen as Constance Guthrie. Right. This bold, you know, visionary that's a leader in her community.
00:06:57:28 - 00:07:32:21
Jessica C. Guthrie, M.Ed.
And so I feel like I didn't realize things were different in our relationship until it was a moment where I was like, oh, my mom doesn't remember my birthday. My mom no longer remembers holidays. When you watch your person lose the things that have always been so connected to who we were. That was like the biggest heartache for me or heartbreak for me, because it was like, okay, things really are different and they're not going to go back to being what they used to be.
00:07:32:23 - 00:07:43:09
Meryl Comer
Do you feel your caregiving role gives you, a unique perspective that others your age might not have? And how has that shaped your goals right now?
00:07:43:11 - 00:08:17:06
Jessica C. Guthrie, M.Ed.
I think when you now become responsible for someone else, my perspective has shifted. My my patience has grown. My ability to operate with empathy and curiosity like that has expanded so much because I recognized for myself. I know I'm carrying so much. I believe that everyone is carrying something, and so I very much operate in a world where I give people more grace, I give people space because I recognize how difficult life might be behind the scenes.
00:08:17:06 - 00:08:41:01
Jessica C. Guthrie, M.Ed.
Right. I would also say, you know, I was so success driven. And my markers of success when I was 26 were like, how quickly can I be promoted? What role can I have, what accolade, what opportunity? And I mean, and I'm I'm proud to say that, you know, I kept my job while caregiving. And so I achieved so many, you know, milestones which I'm proud of.
00:08:41:01 - 00:08:54:00
Jessica C. Guthrie, M.Ed.
But I can tell you now, 11 years in, those things don't matter. You know, like, you know, my success and achievement to me is honestly, I did I did I treat my mom today with dignity and respect.
00:08:54:06 - 00:09:17:04
Meryl Comer
You've, focused on building this online, channel across social media. With career and caregiving collide. You know, it's that intersection where you had all those ambitions and were very successful. And caregiving responsibilities.
00:09:17:06 - 00:09:46:11
Jessica C. Guthrie, M.Ed.
So I initially started sharing on social media because I was a young black professional and I did not see other people who were caring for their parents at 26, like visibly caring, right? I also didn't see people talking about forms of dementia at 26. And so, you know, I would I when I would tell people that my mom was now navigating Alzheimer's, I'm like, oh, we'll go to this support group or go to this local thing.
00:09:46:11 - 00:10:04:20
Jessica C. Guthrie, M.Ed.
And, you know, any, any pamphlet, any newsletter I got, I would read it and I would go and try and I would react when I, when I would get there. I always felt so isolated, because I was the youngest person in the room, and I was often the only black person in the room. Right. And so I was like, I need to create this space.
00:10:04:20 - 00:10:30:27
Jessica C. Guthrie, M.Ed.
And I need and I want to be able to share my story to find other people who are doing the same thing. So that was the impetus of me sharing, when career and caregiving collide on social media. And little did I know, I know, you know, I find other young black women. I found people around the world who were navigating early onset Alzheimer's disease, other forms of dementia that were navigating similar problems and frustrations and challenges.
00:10:30:27 - 00:10:54:18
Jessica C. Guthrie, M.Ed.
And it's become this community where people feel seen, affirmed and just valued for the work that they're doing as a caregiver and that it's I mean, it's it's way bigger than I could have ever imagined. At first, it was a place for me just to kind of vent and share my reality. And now it's become a place where people look to me for, you know, affirmation and validation and support, which is just a privilege.
00:10:54:20 - 00:11:06:29
Meryl Comer
So, Jessica, what issues resonate most closely with your followers? Because the page that you need in that moment in time is always missing, right?
00:11:07:01 - 00:11:34:06
Jessica C. Guthrie, M.Ed.
We have everything from, you know, Gen Z and millennial caregivers. We've got folks who are Gen X, and then we've got older folks who are like, who have gone through the journey and are still wanting to be connected. You know, and or share their lessons. And so it's a, it's a wonderful spectrum of folks. But I would say regardless of age, regardless of experience, the things that resonate the most are one, sharing the challenges of navigating our health care system.
00:11:34:08 - 00:12:01:12
Jessica C. Guthrie, M.Ed.
Right? I don't care what color, race, creed, age you are. Everyone has struggled trying to navigate and advocate for their person when it comes to hospital systems. Doctors, specialists, right? Understanding home health, palliative care, hospice, all of that is, is a common thread. I think the second thing is this sense of, loneliness that resonates so much.
00:12:01:12 - 00:12:18:21
Jessica C. Guthrie, M.Ed.
And it's not like, oh, I'm alone. It's, no one understands what happens at 3 a.m., right? Or like, no one understands or like we don't talk enough about the fact that, like, you wonder, am I good enough? Did I do the right things for my person today? Right? Are there other things I should be thinking of?
00:12:18:21 - 00:12:29:11
Jessica C. Guthrie, M.Ed.
You know, so I try to illuminate those, you know, behind the curtain thoughts, because that's what people really need. Because you don't get that in any other place.
00:12:29:18 - 00:12:55:00
Meryl Comer
You know, I think you make a critical point. I've always felt that caregivers are the keeper of the secret because you're protecting a loved one's dignity and doing all these things and then glossing over it or not mentioning it to protect them as well. What barriers, realities did you, uncover that are not fully understood in the Alzheimer's conversation?
00:12:55:03 - 00:12:56:27
Meryl Comer
Oh.
00:12:57:00 - 00:13:06:23
Jessica C. Guthrie, M.Ed.
You know, this this surprised me. But you realize a lot of medical professionals don't understand dementia.
00:13:06:26 - 00:13:28:25
Jessica C. Guthrie, M.Ed.
And I love your big general statement, but, like, you know, you go and you realize, like, oh, my primary care physician doesn't know about this. I actually need to go to a neurologist or, you know, you not you enter through the hospital system and you realize, like, we're I'm not being listened to. We're not being believed. I need to I need someone else.
00:13:28:26 - 00:13:54:07
Jessica C. Guthrie, M.Ed.
Right. And so, that was the greatest shock, which I became one of my greatest barriers is like navigating almost a humans that didn't understand the disease. To get to what I needed. I think another barrier, honestly, is you don't know what you don't know. We hear that all the time, but it's like. It feels like there's so much that's gate kept in healthcare.
00:13:54:14 - 00:14:23:06
Jessica C. Guthrie, M.Ed.
And so I share this in a sense of one of the greatest barriers is like a lack of knowledge of knowing what exists to help you navigate this journey. And then, you know, I will say the third is just like, it's not even a barrier, but it's a it's a realization that I had was how quickly people walk away or how quickly people, are hard to find when you're navigating a long haul.
00:14:23:06 - 00:14:44:27
Jessica C. Guthrie, M.Ed.
Diseases like Alzheimer's. The folks were there for the diagnosis. They're there when a crisis happens. But like, you know, we're in a year 11, and the folks that were around 11 years ago are nowhere to be found today. And you, you you realize how, you have to cultivate a new sense of community to support yourself through this?
00:14:45:00 - 00:14:49:19
Jessica C. Guthrie, M.Ed.
And it's not going to be the people that you thought they were going to be at the beginning of this journey.
00:14:49:22 - 00:15:20:01
Meryl Comer
So your spirit is full of sunshine, but I'm sure that there has to be some anxiety among young professionals. You know, you're forced to cut back on work hours, decline promotions, leave the workplace altogether, sacrifice ambitions, earnings, retirement, security as well to meet the needs. Because you never know how long this journey might be. Do you get that type of feedback as well?
00:15:20:03 - 00:15:23:17
Jessica C. Guthrie, M.Ed.
Maria. Yes. Yeah.
00:15:23:20 - 00:15:25:05
Meryl Comer
Scarring.
00:15:25:07 - 00:15:50:06
Jessica C. Guthrie, M.Ed.
Yes. You know, come up. I often say I was only able to be the caregiver that I was because of my work environment. And so I was really privileged to have supportive managers and leaders and colleagues. I worked for a place that had you know, unlimited PTO and a paid FMLA policy or paid family leave policy.
00:15:50:09 - 00:16:11:25
Jessica C. Guthrie, M.Ed.
But when I share that, I often hear people say like, must be nice or I don't have that, or like, I just had to leave my job. And, you know, that's a reality for the majority of family caregivers who are really trying to still hold on to their jobs, show up for their family members, and realize they don't have support systems in their work environment.
00:16:11:25 - 00:16:42:07
Jessica C. Guthrie, M.Ed.
Right. And that's a fundamental flaw in our current system. And I really wish that workplaces, companies, organizations saw themselves as critical pieces in their employees care journeys. Right. Your employer can make or break this experience for you. I'm preaching to the choir. You know this. I would say it's a huge issue. And I am someone in 2023 who also chose to leave my job.
00:16:42:09 - 00:16:53:10
Jessica C. Guthrie, M.Ed.
And it wasn't because of lack of support, but it's because I was faced with this feeling of like, I'm doing all this work to pay for care, yet I'm not there with my mom. Like, consistently.
00:16:53:14 - 00:17:11:24
Meryl Comer
What else are employers and institutions getting wrong? Especially around young givers? You know, it's not somebody in their 50s. The classic is 40 to 65 for a caregiver, but it's the young ones that I'm particularly concerned about.
00:17:11:27 - 00:17:39:13
Jessica C. Guthrie, M.Ed.
I really do think employers have to be thoughtful about who are you putting in manager positions, and are we equipping them with the skills to be empathetic, to meet their employees where they are? So many, I would say my friends who are millennials and Gen Z are coming to work sometimes afraid to tell their manager that they might be a caregiver for the for the fact that they might no longer be, you know, considered for opportunities, promotions.
00:17:39:13 - 00:18:03:25
Jessica C. Guthrie, M.Ed.
And so how do you create environments where people can feel comfortable sharing, but also acknowledge that it's just because I'm sharing something with you doesn't mean that I'm not capable. Which leads me to my third point. There's a huge, what's the word assumption that because someone might be a carer, especially a younger carer, they don't have the ability to now show up?
00:18:03:25 - 00:18:31:21
Jessica C. Guthrie, M.Ed.
Well at work? And what they need is not less opportunities. They need understanding, supportive work environment. They can thrive in both places because they are able to multitask. They're strategic thinkers. They they think quickly on their feet. Right. They're able to actually pull pieces together and set a clear vision and clear goals like you want those people. But too often, because the environment is not conducive, they don't feel supported enough to stay.
00:18:31:24 - 00:19:05:02
Meryl Comer
I'm also very concerned in the inner city reality that many frontline caregivers are in their teens because they've been raised by their grandparents. So what advice do you give educators to better recognize and support students because they're embarrassed by the situation? You know, how emotionally charged and difficult it is. So you have to be careful that their experiences aren't misread as truancy or disengagement.
00:19:05:04 - 00:19:13:27
Meryl Comer
It's a very tricky space, but it's part of your generational issues that I think are so critical.
00:19:13:29 - 00:19:37:00
Jessica C. Guthrie, M.Ed.
As a former educator, I taught high school. And one thing I learned very early on was that it is important for me as the teacher and the leader of that space, to make sure that my students knew that I, I saw them creating space for kids to talk will give you insight in ways that you would never get if you didn't take the time.
00:19:37:00 - 00:20:00:24
Jessica C. Guthrie, M.Ed.
And so one educators, slow down, right? Just if you see a student that's disconnected or exhausted, don't assume the worst actually. Like give them the space to share with you because too many young folks are carrying this burden and not knowing how to ask for help, not knowing who to go to for what, and what also exists for them to be able to show up well as a student and a caregiver.
00:20:00:27 - 00:20:18:17
Meryl Comer
Let me ask you, because stigma is always such an issue, especially, when a loved one is younger as well. Are there cultural differences and stigma? In the black community?
00:20:18:19 - 00:20:45:21
Jessica C. Guthrie, M.Ed.
Yes, there are. And I you know, I'm I'm really careful about trying not to generalize because everyone is different. But what I do know is that from my experience, when when I was growing up, we never really talked about Alzheimer's as a disease. We all just kind of, like, swept under the rug. It's like, oh, that that person just has a little issue with their memory, right?
00:20:45:21 - 00:21:24:06
Jessica C. Guthrie, M.Ed.
Like, oh, we're just going to push them over here. Which leads to which you can already see leads to getting to the doctor too late, not getting an early enough diagnosis, not being able to navigate the use of medications. And so that happened beyond my own family experience. I see it all the time within our community. I also think that in addition to the stigma, there's also the barriers of when you do notice something or when families do notice that like maybe their person is having some short term memory issues and they go to their provider and the provider just assumes it's something else, or doesn't listen to them, or their provider is navigating
00:21:24:06 - 00:21:48:04
Jessica C. Guthrie, M.Ed.
a set of stereotypes and assumptions and doesn't give them the space to move into the process. And so we're not just fighting our lack of understanding and education within a community. I believe that, we're also navigating biases and stereotypes and assumptions when we get to the medical system, which almost creates like a double edged sword. In getting a fair and early enough diagnosis.
00:21:48:07 - 00:22:01:05
Meryl Comer
And you also brought up the fact that most care caregivers feel that they're treated as invisible when we're on the frontlines of the care and we know the detail, but no one bothers to ask.
00:22:01:07 - 00:22:02:24
Jessica C. Guthrie, M.Ed.
Yes, yes.
00:22:02:26 - 00:22:15:22
Meryl Comer
The church is so central to, your community. What do you say to the clergy and how they treat people? Because this is a long journey.
00:22:15:27 - 00:22:53:19
Jessica C. Guthrie, M.Ed.
Oh my goodness. I laughed when you said the church because I'm just. I'm. My experience is nothing like I ever imagined it would be. With our relationship with our church navigating to your point, 11 years of Alzheimer's disease and so maybe my message to all clergy, regardless of denomination, is just to when when your person or when that family starts coming to services, when they're no longer able to, like, be involved, make sure that you still check in on them.
00:22:53:19 - 00:23:14:19
Jessica C. Guthrie, M.Ed.
You still come to visit, right? You even if you can't come visit. How are you finding ways to check in and check in on the caregiver? Right? I can tell you that I haven't seen our, you know, church pastor. I've only seen them come to our home twice in the 11 years that my mom has been navigating this.
00:23:14:24 - 00:23:35:00
Meryl Comer
I was always, not touch, but amused when people said, oh, make sure you take good care of yourself. And I thought, yeah, I don't think you really know what's going on at home. How do you manage that? And what advice do you give online?
00:23:35:03 - 00:23:49:01
Jessica C. Guthrie, M.Ed.
So in 2020, I thought I was having a heart attack. I was burning the candle at both ends. I was, you know, flying back and forth, but I was also home with my mom. And I realized in that moment I was like, if something happens to me, there's going to be no one here to care for my mom.
00:23:49:04 - 00:24:03:05
Jessica C. Guthrie, M.Ed.
It was not a heart attack. It was an anxiety attack because I was doing too much and I was too stressed as a family caregiver. And it was that moment in 2020, September 2020, when I became more disciplined about my own, well-being.
00:24:03:08 - 00:24:28:25
Meryl Comer
I'm sorry to hear that. You are now in hospice care for your mom. That's always a very difficult. It's all difficult. Let's be honest. It's all challenging. But that's really, emotionally very, very draining as well. How does it feel not to have guilt?
00:24:28:27 - 00:24:51:24
Jessica C. Guthrie, M.Ed.
I learned very quickly the moment that I put it on hospice the first time, it was May 16th, 2022, and I thought she only had like six months to live. It is now 2026, folks. Okay, so my mom is still here, but we're back on hospice and this time not getting off. But I learned quickly that my mom benefited the most from me slowing down and getting present.
00:24:51:24 - 00:25:25:02
Jessica C. Guthrie, M.Ed.
And proximate. And it is in those moments where I was able to see her smile in a different way. I was able to see her, like, feel soothed and like, connected through music. I was able to see that my mom truly just wanted me to sit next to her bed and hold her hand. And so I don't have guilt because I know that, like, I have truly quieted the noise around us and really poured into my mom in ways that meant the most to her and ultimately have meant the most to me.
00:25:25:09 - 00:25:41:03
Meryl Comer
You're online and people can access you wherever you are. How do we support that change? Because that becomes pivotal for your generation and the most meaningful.
00:25:41:05 - 00:26:10:16
Jessica C. Guthrie, M.Ed.
You know, I think the greatest way to support family caregivers and to support just like what is happening in terms of the evolution of who is caring and the technology that we use is just continuing to be open about what it means to be a caregiver, what it means to care for people living with Alzheimer's disease, and use our stories as places of connection and places of of, of of expertise.
00:26:10:16 - 00:26:31:06
Jessica C. Guthrie, M.Ed.
But also like, normalize. And you don't have to have all the answers. You don't have to like, you don't have to suffer alone. And in fact, there's a community of folks who are sharing their stories and, and, and, and navigating this with you. And so I think I think that's honestly the recipe even as we move forward.
00:26:31:10 - 00:27:03:25
Meryl Comer
I'm sure your mother would be very proud of you, Jessica. You know, she is our guest today is Jessica Guthrie. Her master's of education is involved in administration and leadership. And we know you've got that point. Yeah. So check out her innovative online platform. Career and Caregiving Collide. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
00:27:03:27 - 00:27:12:25
Narrator
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