CareYaya speaks with Jessica Guthrie. Jessica is the full time caregiver of her mother, Constance Guthrie, who is living with Alzheimer’s. Jessica created When Career and Caregiving Collide to share her experiences of starting a career and simultaneously being a caregiver. Join us today as she speaks on these experiences first hand, as well as share her personal encounters with medical professionals as she navigates the healthcare space.
As more young professionals become overnight caregivers for parents with Alzheimer’s disease, the physical and emotional toll can feel completely overwhelming. In this eye-opening interview, Jessica Guthrie pulls back the curtain on her journey caring for a mother with early-onset Alzheimer's at just 26 years old. A leading provider in affordable home care for seniors with Alzheimer's, CareYaya strongly supports the journey of family caregivers like Jessica.
Jessica explains the challenges navigating biased healthcare systems and fighting to be heard by dismissive doctors about her mother's very real pain and symptoms. She also shares advice on balancing career ambitions while still showing up fully present to care for a declining parent.
Finally, Jessica highlights small self-care tools that help her cope with grief and trauma when no other family can assist. Her advocacy provides hope and comfort for overwhelmed dementia caregivers struggling to advocate across healthcare’s empathy gaps. If you feel alone on this difficult path with a newly diagnosed parent, Jessica’s wisdom eases the way forward.
Summary:
Takeaways
- Caregiving for a loved one with Alzheimer's disease can be emotionally and physically demanding, requiring caregivers to navigate the healthcare system and advocate for their loved ones.
- Addressing implicit bias in the healthcare system is crucial to ensure equitable treatment for all patients, regardless of their background.
- Training and support for family caregivers are essential to help them navigate their caregiving responsibilities and provide effective care for their loved ones.
- Taking care of oneself as a caregiver is important, and finding resources and strategies for self-care can help maintain physical and mental well-being.
Chapters
Full Episode YouTube Video:
Full Episode Transcript:
Leah (00:01.447)
Thanks so much for coming to speak with us today, Jessica.
Jessica C Guthrie (00:05.27)
Thanks so much for having me.
Leah (00:07.755)
To start us off, could you just tell us a bit about yourself, about your career, and your personal journey of becoming a caregiver?
Jessica C Guthrie (00:16.27)
Cool, big questions. So who am I? I am Jessica Guthrie. I am an only child of my mom, Constance Guthrie, and I am her full-time caregiver as she is, oh, let me put my phone on, do not disturb, as she is living with Alzheimer's disease, and I have been her caregiver for the last nine years. Who am I, right? Like I am a daughter, I am an advocate, I am an educator.
I am someone who deeply cares about justice and equity and ensuring that people get what they deserve in all aspects of our life. In terms of my career, for the last 13 years, I have been an educator and I've worked for a large education nonprofit in many different roles, supporting teachers, training teachers, developing teacher leaders, and then leading pretty large teams.
in our nonprofit and now currently I am figuring out what's next for me as I recently resigned from my role to spend more time with my mom and get proximate to her as she is in the final stage of Alzheimer's disease.
Leah (01:35.399)
Thank you for sharing. It sounds like your professional experience is really interesting and is lending your skills to a variety of different roles. And the relationship you have with your mom, which we will get more into, is truly special. And it shows such a powerful bond. And I'm interested in learning a little bit more about your mom.
Jessica C Guthrie (01:58.71)
Mm-hmm. My mom's amazing, and obviously I'm biased because she's my mom, but I tell people all the time, I was her 39-year-old surprise. She thought she had the flu, but I was a nine-month flu, and the best thing that could ever happen to her. But my mom is someone that has always been creative, independent, fiercely loyal to people.
would never take no for an answer. My mom owned her own salon for 17 years in Alexandria, Virginia, outside of DC, where she traveled the world, hair shows, conferences, and ran her own business with multiple people working for her. And then my mom, when I talk about being like someone who was so selfless, she gave her business up and sold her business to move to suburbia, Virginia, to raise meat to ensure that I had the best.
education and outcomes as possible. And so when I talk about my mom, she's someone who had great dreams, aspirations. And as I clean up the house, like I'm seeing photos and news clippings and insights into who this woman was. And she was that for me growing up and still is someone with a spunky personality. She says what she wants.
operates how she wants to even now in the current stage that we're in.
Leah (03:25.923)
Yeah, your mom sounds like an incredible woman. Um, and it's really interesting that she put a pause on her career to raise you because that's also what you did putting a pause on your career to take care of her when the roles were reversed. And just from your descriptions and from your social media presence, I feel like I have gleaned that your mom is a very strong and independent woman and it took a minute for her to accept the idea of receiving help.
Jessica C Guthrie (03:39.158)
Yes.
Leah (03:55.303)
Could you tell us a little bit about how you navigated that journey?
Jessica C Guthrie (04:01.474)
And I would say it's not because she was never not open to help, but I do think when it comes to a diagnosis like Alzheimer's disease, there's a lot that goes into that for someone in there, just like their egos, right? Like the, oh, I'm fine, nothing's wrong, I was just testing your memory. Or like, I got it together because I think that because we don't talk about it enough and society doesn't really understand Alzheimer's disease.
maybe there's a huge stigma with it. And I think my mom potentially was like, but I don't need you to help me. I can still do this on my own. And so I think she spent a long time potentially like trying to mask it or hide the fact that things were changing, but didn't really know what was happening, right? And as her daughter and like protector, right? Like
Leah (04:45.936)
morning.
Jessica C Guthrie (04:57.278)
you roll with the story too, right? Like you want to protect her dignity and the story and the brand of your loved one because you don't want people talking about you. You don't want people pitting you. You don't want people thinking that you can't do something. And I think now that we're like nine years in this journey, that's what my mom was doing, was trying to protect the image of Constance Guthrie, right? Which is what led to potentially not wanting
except the fact that this was a disease that she was now living with.
Leah (05:34.083)
Yeah, it is certainly a hard thing to accept. And for years, there was kind of this singular narrative on what Alzheimer's looks like. And recently, voices like yours are amplifying the variety of experiences that exist and persist in society. But I can certainly understand the hesitation to accept or acknowledge a diagnosis like Alzheimer's. So I also understand that you are the founder.
of when career collides with caregiver. Will you tell us a bit about that mission? Where were you in your career when you started caring for your mom? And yeah, what was the initial process of coming up with when career collides with caregiving?
Jessica C Guthrie (06:12.238)
If you want to see more of this, go to the link in the description.
Jessica C Guthrie (06:20.489)
Mm-hmm.
you hold on it is when career and caregiving collide there we go i almost got confused myself yeah so it's when career
Leah (06:34.927)
I am so sorry. Let me re-ask that whole question and we will cut that out. Oh, when caregiving and career collide.
Jessica C Guthrie (06:45.642)
and caregiving collide.
Leah (06:47.343)
When Career and Caregiving Collide. Okay, When Career and Caregiving Collide. I don't know why I have it written backwards down. Um, okay. So I understand that you are the founder of When Career and Caregiving Collide. Will you tell us a bit about this mission?
Jessica C Guthrie (07:03.178)
Yes, so I was 26 years old when I became my mother's caregiver. 26 years old, I was just really starting my career. I think I was like maybe one and a half, two years into working at Teach for America. And on the track to become executive, I had started my job, and I was like, I want to be executive director already within two years. I was.
starting to carve out what my or what I wanted my career path to look like. And you know at 26 my peers were doing the same thing. They were traveling, they were living their lives, yet I was then hit with what it like being a caregiver for my mom. And when career and caregiving collide truly represents for me like the collision that happened. Like it felt like my world
came crashing down. And in that, I realized like, yeah, but like you have to keep going. You have to figure out how to have both things because you do not have the privilege of leaning on a partner, leaning on a family member or anyone else. Like you've got to figure out how to balance both. And so I created like from a social media perspective when career and caregiving collide to elevate my story of what it meant to be a young,
millennial black woman early in my career, navigating this unknown world of Alzheimer's disease. And that people like me were caregivers, and we were caregivers trying to figure out who we were professionally, and that we could have both, and what it might require for us to have both things.
because frankly, we don't have a choice. We need both. So that's kind of where that came from and my story because at 26 years old, as a young black girl living in Dallas, Texas at the time, I did not see other people like me sharing their story, amplifying the realities of this experience. And I wanted to create a space for people to feel seen, a space for people to understand.
Jessica C Guthrie (09:25.046)
and a space to uplift insights so that people weren't so ignorant to the realities of the things that I was experiencing and what I'm now learning, so many people in my age group were experiencing and are experiencing.
Leah (09:44.563)
Yeah, well, I certainly want to applaud you for sharing your experiences because you are absolutely right that this is something that is not commonly discussed, even though it is commonly experienced, this intersection of employee having a working professional life and taking on the role of personal caregiver. We don't hear stories about people doing both, even though they definitely are, and that's for a variety of reasons for fear of
workplace retaliation or being passed over for a promotion or just it's something that people are scared to speak about often and so I'm really appreciative that there are voices like yours out there who are spreading awareness, who are advocating for changes that need to be made. And so you've brought up the unique experience of being a young black woman in this position and I know that on top of being a caregiver, you have also had to be an advocate for your mother's care.
Jessica C Guthrie (10:16.061)
Mm-hmm.
Leah (10:41.351)
implicit bias in the healthcare system can lead to misdiagnoses and inadequate treatment. So can you speak more to specific challenges that you've had to advocate for your mother in and how has that impacted your ability to function as a caregiver?
Jessica C Guthrie (10:59.47)
Hmm, you know, I think you grow up learning or believing like, oh yeah, doctors know everything. You trust your doctor, right? Like you trust the healthcare system, like anything related to medical professionals, they are there to look out for you. And I learned very quickly on this journey with my mom, that's not always the case. And what I mean by that is just like, I think I trusted
medical professionals to know about Alzheimer's disease. I trusted medical professionals to be able to like, you know, ask me the questions and, you know, bring me in. And I quickly realized like, oh no, I, Jessica, need to be overly equipped with my data, my trends, my insights so I can ask good questions and slow doctors down.
to get the information insights that I needed. On top of the fact that I think, so there's that, there's just like the general preparation to navigate just the medical system is a barrier in itself because so many people don't have the time, don't have the energy or even just the wherewithal to do so. And I think that was like barrier number one to navigate. I also think the fact that like I'm a young, I'm a, I,
I'm a young caregiver and I am someone who is going to speak up for my mom and ask for what is needed. And that's not always received well because it's perceived as, you know, not trusting, bucking the system, not, you know, all of that. But the reality is, like, if I don't speak up for my mom, who will? Right? If I don't tell you that my mom is in pain and that I'm concerned about something happening, she's not going to get.
the service that she needs. And that has happened to me time and time again over the last nine years. I think to name specific examples, like I, well, let me, the positive side first. My mother's neurologist was amazing. And I think it's because when you're a neurologist, you see so many like just disorders impacting the brain that you've learned how to be empathetic and thoughtful to the realities of forms of dementia. And so my neurologist,
Jessica C Guthrie (13:23.818)
was excellent and has been excellent from the beginning. But I think every other medical professional has created barriers and roadblocks for me. Because they didn't believe me, or they didn't listen to the realities of our experiences. Things like my mom having pain in her abdomen, and because she had Alzheimer's disease. Oh well, people with Alzheimer's, they turn it on and off. And so maybe it's just gas, right? And you're like, no, but I believe my mom.
I just can't tell you exactly where the pain is, but there's something there. Fast forward a couple days later, she had a hernia, needed surgery to repair said hernia, right? Did my PCP believe me? No, right? I think there's also the instance of going to the emergency room for pain in my mom's, what I thought was her knee, but the doctor didn't take the time to understand or listen to me and the realities of caring for someone with dementia.
that he overlooked the fact that like her ankle was radiating and she actually had a blood clot in her leg. He sent us home with narcotics and said she'd be good potentially thinking about rehab. And so another example of not getting the benefit of the doubt or like a full workup or full understanding of what's happening, that could be race, that could be age, that could be Alzheimer's. It actually probably is a combination of all of that. But again,
barrier for me because what did that mean? I had to go to the PCP, then imaging, and then three other stops before we got a real answer, right? That looks like doctors in the hospital not believing that my mother needs a certain medication and not prescribing it during a hospital stay. Saying things like, well, does it even work? Does that medication even work? Why does she need it? And giving me less than her dosage, right? And so those are three really specific examples. But when we talk about
bias, when we talk about like barriers to families navigating to support and advocate for their loved ones, medical professionals should not be the people slowing down this process. When in fact, I all, in each of those examples, I had three to five more steps to take to get my mom the treatment that she deserved because of either negligence, ignorance, or just like not listening to me during this journey, and that's unacceptable.
Leah (15:54.007)
It's truly unacceptable that you have experienced this even once, let alone numerous times in every interaction with every healthcare professional. So there is absolutely work that needs to be done. And from your perspective in your advocacy journey, what are your top priorities or goals in changing the future of caregiving, the future of family advocates in the healthcare space?
in addressing implicit bias in medicine? What are, yeah, what are these top priorities?
Jessica C Guthrie (16:29.002)
Ooh, so many big things you named to solve. Okay, but if I can boil them down, right? Things that matter most based on my experience. I think one is, and in my mind, this seems simple. And I, of course, have never gone to medical school. I just, you know, am an outside person who's been navigating this as a family member. But I would be, I would love.
Leah (16:32.216)
Yeah.
Jessica C Guthrie (16:53.682)
if we really overhauled the training and support that medical professionals received, rooted in really strong cultural competence training that supports being able to communicate across lines of difference, across age, race, and other cultural differences, because the greatest breakdown has come in communication or lack thereof.
And you're like, this seems simple to me, right? So there's that. I also think with that, like when I say cultural competence, it's also just like understanding the history of race in this country. And what does that mean for how people show up or don't show up in medical settings? And or what choices do you need to be making as a medical professional to ensure that you're giving equitable treatment
to all the people that enter your office space, regardless of their background, right? For said doctor in the ER, my mom's leg was swollen. It was a little red. It does look different on her skin than it does on white skin, but did you take the time to examine and look? No, right? So there's like things like that are rooted around what I'm calling just like my cultural competence bucket that I think starts in school and it starts in just ongoing,
care and desire to want to challenge your own beliefs, experiences, ways in which you've been socialized to show up because you care about equitable outcomes for all people. So I think that's step one. Or maybe like one, two, I think the second priority is like, how do we really support family caregivers? And actually a lot goes untreated.
unnoticed because family caregivers just don't know. They don't know the questions to ask. They don't know like how to you know be prepared when they enter a space. They don't know what they need to be holding on to and it's just like I need for folks to come in armored right like you need you need your binder or your booklet. So like I think we need to spend time making sure family caregivers with any diagnosis we don't just send them home with a pamphlet and say good luck. We actually say okay great this is the diagnosis.
Jessica C Guthrie (19:20.95)
Well, maybe not great, but this is a diagnosis and like here are the next steps you need to be taking. So you're equipped to be an excellent advocate. And then finally, I think that we really have to spend time training the people caring for our loved ones, whether that is like in the medical setting, people coming into your home, home health, hospice, care agencies. I just think that like, people are always gonna continue to age. People are gonna continue needing care. And one of the...
the things that actually hinders people's progress and are just like health outcomes, it's just like poor care. And I can honestly tell you, my mom is still living because of the intentional efforts I put into caring for her. And people shouldn't have to have another Jessica. People should have folks that they can rely on, they can trust to be here to offer support and respite and like effective care strategies.
particularly when it comes to forms of dementia, because we are not included when it comes to caring for our aging population well enough. Those are my top three. There's plenty of others, but those are my top three.
Leah (20:31.579)
Those are some pretty good top three. Um, that's, yeah, thanks so much for sharing your insight in that role. And I have several questions to ask based on that, but I'll start with you brought up the emotionally and physically demanding nature of being a caregiver. So what are some ways that you have found to be helpful? You've mentioned respite care. You've mentioned
leaning on additional support sources? What are ways that you've found to be helpful to take care of yourself? Resources that have been beneficial?
Jessica C Guthrie (21:03.306)
Yeah, so I'm an only child and I am the only person in my family caring directly for my mom. And so everything that I do, I have to lean on someone being willing to volunteer their time and or pay someone. It's mostly I'm paying someone for the hour to be here. But what are things that I do for like to help get through this journey? I think, you know, sure, there is the, or like the resources, I think leaning on
your community resources. Every community is different. But we have the local area agency on aging that offers volunteers that may or may not come to your home and or different programs. I tried to get my mom in a senior day program to go away for a couple of hours and come back. She was denied, but that's a resource. Right? I think about HFC that offers respite grants, AKA someone comes in to your home while you're in the hospital.
Leah (21:52.533)
I'm sorry.
Jessica C Guthrie (22:00.79)
you get a few hours away. I also think about other nonprofits that offer literal sums of money to help you escape. And so those are the resources, but in terms of just general strategies, the reality is as a caregiver of someone living with Alzheimer's disease, getting away is difficult. And so I've had to learn, what are the things I can do at home within my schedule to create just calm and peace and care? That includes meditation, quiet time, either at the beginning,
or the end of the day. That includes resting when my mom is resting, AKA like if she's asleep, don't go do something. Watch Netflix, right? Like chill out. That includes a really strong, just like workout and or physical wellness routine at the local YMCA. That includes being disciplined about my meal prep because nutrition is one way in which you can take care of yourself that we don't always think about. So those are things that I lean on.
To get through this, is it perfect, is it consistent? I would say like 92% of the time. Ha ha.
Leah (23:04.942)
Hahaha!
Yeah, certainly I'm sure it has been a learning effort through the years and strategies change. It's, I feel that more and more resources are coming about. Now, are they always easily accessible for everyone? No, and that is something that needs to be improved. And of course, there is always room for innovation and new solutions in spaces like caregiving. Do you have any final thoughts for someone
Jessica C Guthrie (23:32.083)
Mm-hmm.
Leah (23:37.427)
perhaps newly entering the caregiving space, or for someone who has been in this space for years and is reaching up a point of exhaustion and needs a little bit of encouragement and motivation, what pieces of advice do you have for people in these positions?
Jessica C Guthrie (23:54.07)
Yeah, what I always tell people, whether you're new or still on this journey, is that you're truly doing the best you can. Right, like you only know what you know. And I think if you're making the commitment to show up and care for a loved one, whomever it might be, right? Like you're making a commitment to show up and be the best you can be in this moment with the knowledge that you have. And so one is you're doing the best you can. And so that's one. And two, it's like you are where you're supposed to be right now.
I think so often, especially even for me, right? Like I was resentful for a little bit. I was frustrated that this was like my life when I wanted to be, you know, traveling and living my 20 some odd year old life. But I think I have now come to terms with and I'm like content with saying, no, I am where I'm supposed to be in this season. This is how I am growing and strengthening, you know, who I will become.
And that in itself is valuable. And the last piece I'll just share is like, it is okay to ask for help. People can't help you if they don't know what you need. And I think that's hard for folks who don't wanna be a burden. But what you don't wanna do is fast forward and be like, gosh, I wish I would have. Or hear people be like, if I had only known, and I think that that, you can ask for help in many ways, whether it's just you type up a list and send it out.
You put it on Facebook, Instagram, TikTok, whatever your thing is, right? Like, it could also mean, right, say like, I don't know what I need right now, but I need my friends to show up for me. Or like, I need for you to call. And so, whatever it might be, whether it's really big or small, do not hesitate to make the ask, because that is the only way you're gonna make it through this journey. I'll stop at three things.
Leah (25:45.623)
Again, three excellent points. Thank you so much for sharing and you are doing incredible things. You are where you are supposed to be because you are making an impact in the lives of so many just by sharing your story, by working in an advocate and educate, educate in space. So thanks for taking the time to speak with us and I just really appreciate you, your sharing.
Jessica C Guthrie (26:09.834)
Awesome, thank you so much. You're such a great interviewer.
Leah (26:13.497)
Oh.