https://www.jessicacguthrie.com
https://www.instagram.com/careercaregivingcollide
Transcript
You’re listening to “In Sickness,” a podcast about caregiving, with Allison Breininger and Justin Bajema.
Allison: Morning. Justin.
Justin: Good morning, Allison, I’m really looking forward to our conversation today, because we have with us Jessica Guthrie, whose Instagram account, @careerandcaregivingcollide, has a large number of followers, and for a good reason. She posts all about her life as a caregiver, what her days look like as she’s caring for her mom.
Allison: I was so lucky. I got to meet Jessica when I went to CareFest last year. I got to meet her in person, and since then, she’s become a board member for the Negative Space. And I feel like every time I’m like in her presence, I learn something. She’s so very thoughtful and smart. And so Jessica, I’m so glad you’re here to with us today to talk about what it’s like when careers and caregiving collide. So welcome.
Jessica: Thanks for having me.
Allison: Of course.
Justin: So Jessica, can you tell us a little bit about your caregiving story for our listeners who are new to you, and a little bit about kind of that background?
Jessica: Sure. So I am the full time caregiver of my mother, Constance, who is living with Alzheimer’s disease. I have been her full time caregiver for the last 10 years. She was diagnosed with early onset Alzheimer’s disease at 66 in 2014. In 2014 I was 26 years old. I was living in Dallas, Texas. My mom was in Virginia. I am an only child, and so I became a full time caregiver from a distance at 26. And I have been caring for her ever since. For the first half of this journey, I very much traveled back and forth because I had to keep my job. I had a life in Texas that I was building, and so I would travel home like once a month, once every six weeks, initially, to check in on her. Because I’m not sure how many of you are familiar with Alzheimer’s disease, but for the first in the early stages, she was still able to live very independently, and so my job at the beginning of our care journey was to, like, create systems and routines that she could follow. You know, read instructions, read a whole bunch of post it notes to keep herself, you know, engaged and entertained. And so that was the first half of the journey. And then in 2019 my mother’s disease progressed to the point where she was starting to wander. And so I packed everything up in Dallas, Texas, put it all in storage, my left my car at the office, and I said, I’m moving back home, and home in Virginia was to be my, my home base. And at the time, little did I know that, and that was before the pandemic. So it felt like such a huge, huge deal to work from home to to be virtual in my workspace. That was very like in person. A year later, the pandemic happened, and everyone was like, “Oh my gosh, we’re working from home.” And I was like, “Welcome, welcome.” And so that was 2019 and then my mother’s disease again continuing to decline. In 2022 she lost her ability to walk and is no longer ambulatory. And then I put her on to home hospice the first time. May 16, 2022 because she had gotten to the point of weight loss, infections, falls, all the things. And then fast forward to present day. My mom is still here. She’s 76. No, she’s 75 . She’s turning 76 october 3. But, yeah, she’s still here, and I just put her back onto hospice for the second time, just because we’re at the point now where it’s like, oh yeah, we’re in the later stages. And you know, I’m just really grateful to have continued to walk this journey with her every step of the way. That’s the highlight version. I’m sure you have more specific questions.
Allison: Thank you for sharing all that with us. So can you tell us a little bit like, what was the job you were doing at that time? And then you said, first you were doing a full time, and then you were traveling back and forth, then you were working remotely. Are you still in that job? Or have you since left that? Can you talk to us a little bit about your career path and how caregiving has impacted it?
Jessica: Sure. So I graduated from undergrad in 2010. In 2010 I hopped on a plane and moved to Texas and I became a teacher. And so I taught with a program a large education nonprofit. And then I was like, “Oh, I like it here. I want to grow and develop here.” And so after my time in the classroom, I joined this large education nonprofit organization and became a teacher coach. I was really just starting my career, but I knew at the time, I was like, “This is where I want to, like, grow and blossom.” And I was like, “I want to be an executive director within three years.” I created this track of what I wanted for myself professionally. Because in the end of the day, I was like, “I’m gonna run for Secretary of Education. I need these boom, boom, boom, boom, boom experiences.” Like I I had Plan A, B and C, yeah, very much planned out. And so at the beginning. I was, you know, working in Nonprofit educational leadership and management. And that was what I was two years into my role in 2014. I am not a typical millennial, and then I stayed at my job like I have not bounced around in jobs. And so I started. I was there in 2012 and I worked in the same company for 11 years. And so I actually stuck around. I grew, I promoted, and all the things there. I actually left my job most recently, May 2023, so a little over a year ago. I was recently the Vice President and Chief program officer at the organization. I had, like, accomplished the C-level suite. I had done the things, but my mom had declined, and I made the choice that, like, I need to be more proximate and like more present. And so I told them, like, a year in advance, that I was leaving, because that’s what good executives do. You know, you give people time to transition. And so then I left a year and a half, like, a little over a year ago. All this, you asked me a more specific question. I don’t remember it. Oh, just my career, yeah. And so I honestly, like I spent a long time, especially in the early years of caregiving, holding tightly to my title, holding tightly to my profession. Because I was Jessica, I worked for Teach for America. I was in this prestigious place, you know. And you know, a lot of my energy went towards being a really great worker and being competent in my job, and being seen as highly effective and all the things. And I very much realized when I became a caregiver that none of that mattered. And, you know, even now, I’m just, I was a VP. I’ve had the titles, but the greatest title that I have right now as caregivers, my mom, for sure.
Allison: So, I mean, you say, like, it doesn’t matter, but I wonder, like, what was that process like, can I actually let me hop in? Are you an Enneagram three by chance?
Jessica: No, I’m an eight wing seven.
Allison: Oh, interesting. Okay, just because when you were like, you know, I’m a three. And so when you were like, “I achieved this, and I this, and I productive.” So anyway, you said, like, you, you know, you were so driven. You had the goal, and you had the ABC, and, you know, all of the vision board, essentially. And now you realize, like, oh, that doesn’t matter. But I would guess that the hop from here to here was maybe not that sweet.
Jessica: Oh, sure, right, yeah.
Jessica: Yeah. I mean, I think we got to go back. We got to rewind a little bit. I tell people all the time that I was only able to be the caregiver that I was because of my workplace. I say this knowing the privilege that comes with that, because that’s not the case for many caregivers across the United States. But I had a supportive managers, a set of managers. I had supportive colleagues. I had people who I worked with that understood that I was hopping on planes at 6am on the east coast to get to 10am meetings in Texas. Like I had colleagues that knew that my plate was overflowing, and so I did not come to the place that I am like lightly. I got here because I also was really supported as a human being in my workplace. I wasn’t seen as just like a widget or someone who was fulfilling a role, even though, at times, you know, when you’re like in startup life, it feels like that. But, I truly wasn’t. And so I start there, and I say this because I think there was so much grace and space for me to show up for my mom all the while people still believing in my potential and what I was capable of doing in my job. And well, that also comes with I worked my butt off before I became a caregiver like so I had that under my belt. But still, all this is to say, I think that I was able to develop as a intentional caregiver and knowing that, like people weren’t questioning my competence and character on the other side of it. You know, when I returned back to work, or like when I was coming back and forth, or when I was working virtually.
Allison: So what was it like in the middle to kind of go from like “I have this goal and this plan” to maybe realizing at one point “it’s not going to go the way I thought.” You know what I mean, what was that like for you?
Jessica: But then I will say that, like, you know, managing people is a lot, navigating and solving big, complex problems is a lot. And being someone who is responsible for outcomes and outputs of other people. I quickly realized that, like, those skills actually serve me really well as a caregiver. I would be strategically planned, a backwards plan to think through, like, what, how are we going to get from point A to point B with my mom? And so I’m not rambling, but I am like, I’m talking a lot because I’m trying to make the point that, like, my life as a caregiver is only as fruitful as it’s been because of the skills I took from my job and, like my work experience and applied it to caregiving. And then my ability to be such a strong caregiver allowed me to be really focused when I was in my job. All this is to say, though even with all of that, I quickly realized when I put my mom onto home hospice and I took family medical leave at this point, I was completely burned out because I had been traveling back and forth every two weeks. I mean, the things that I did were crazy.
Jessica: In hindsight, I don’t know how I did it, but I took 10 weeks off, and even though I just said I’m the caregiver I am because of my job, they were so supportive. When I walked away for 10 weeks, I realized that I was not that important, The work kept going on. People were clear about, you know, how they were going to step in and lead and accomplish X, Y and Z thing. And frankly, like, yeah, sure you’re missed, and yes, you’re needed, but like, the world doesn’t revolve around you. Like your work, you are, you are bigger than the things that you create in your job. You were bigger than a title that you hold. And when you think your loved one is going to die, we were sitting next to them and slowing down, you realize none of the stuff that you were doing, the pace that you were moving at, the acceleration of trying to be this and be that, none of that matters. And frankly, like, you know, I don’t want to be known as Jessica the nonprofit executive. Okay, that’s a chapter in my life. I want to be known as someone who was patient and kind intentional, who was proximate and truly present with the people that she was around and impacted those that she cared for and believed in. You only get to that point – I believe I didn’t get to that point – until I slowed down enough to realize I’m making this life up. You know? I’m in a hamster wheel because I told myself, I have to keep spinning like this, right? I’ll pause there.
Allison: Well and also, like capitalism has told you that. The world has told us all that, right? And so. But for you to be at this, this young age and to have this wisdom, you know what I mean? Well fought, hard, hard won wisdom. But, yeah, some of us, some people, never get there because they don’t have the perspective that you’ve had of like, “Oh, I thought this was important, Aad is it not, you know, what’s really important?”
Justin: It sounds like in your situation, your employer, your colleagues, were, you know, well aware of what was going on, Were very supportive in your situation of trying to work, trying to be a caregiver in both things. What would you recommend for other caregivers who are working as far as like, how much they should share with their employer, how much to share with their colleagues, and how to kind of navigate that balance while trying to get the support they need from work to do what they need to do?
Jessica: Yeah, absolutely. I think before I talk about what caregivers need to do, I just want to speak to people who potentially have power and in organizations and think that honestly the… And I worked for a really progressive organization, and I still felt unseen. I still felt invisible, right? Like, I think a lot of companies have done a lot of work to create space for people who are caregivers, that are parents, right? There are tons of policies for bringing in new children in this world, whether you’re birthing them, however you’re getting them, right, like you. There’s leave policies. There is like protections, and people talk about it freely, right? People are even in just like our language and how we talk about, like, who has other responsibilities, it’s always very children focused, right? And, you know, people fought very hard for that to be true. And the reality is, in 2024 the I can guarantee you, one in five of your employees have some sort of caregiving. Responsibility of both a like younger generation and an older generation. Yet the people who are caring for parents or loved ones that aren’t children likely do not feel safe enough to bring it up, and likely do not know if there are any of the policies and resources and supports you have available in your workplace. And so the first thing I would just say is that companies have got to really evaluate what are the policies we have available that are like for all types of caregivers.
Jessica: Two, what is the language that we’re using so that people feel, you know, seen and valued and affirmed, even in the smallest of ways? And three, how are we training our managers so that, like, because in the end of the day, and I mean not all companies, but I’ll speak in the general just like professional sense, people, people work with your manager. And if you’re like, manager relationship is not strong or affirming or open, your person’s not going to feel seen or valued. And so how are we training managers, or like your frontline people, to be aware enough to hold space for your employees. So that’s like the first thing I would say, like employees, you’ve got to – employers, excuse me – you’ve got to really be thoughtful around being inclusive of the like types of workers you have in your environment.
Jessica: With that being said, whether that exists or not for you caregiver, because the reality is that’s not true for so many workers in this country. I think we are conditioned to like, keep our lives private. We are conditioned to like, not say what’s happening. We’re just put your head down, plow through, show up, punch in, punch out. But at the same time, and yes, everyone’s navigating different diseases, different issues, but as a caregiver, there’s going to come a time when you can’t continue to put on the mask and keep going. And so what I would suggest is, you know, open up the conversation early with your manager or your like boss, however your such situation is and just share this is the reality of my current experience. I’m not sharing with you to lighten my load. I’m not sharing with you to take anything away from me. I’m not sharing with you to do anything different. I’m sharing with you for just like true knowledge, because with knowledge comes greater empathy. With knowledge comes the ability for people to check in on you, right? With knowledge comes when crisis comes, people aren’t caught off guard, right? And so I would say the first thing is just like, truly, just open up the conversation. I think the second thing is that I have noticed that so many managers are riddled with bias about caregivers and what they can and cannot do, right? And so I think it’s up to you, caregiver, the worker is to say, “Yes, I’m a caregiver. And here’s the track that I still want to be on, right? Like, these are the opportunities that I still want to be true for me, or, like, things that I still want to be considered for, right?” Because you’re basically, like, challenging the notion of, oh, but they’re too busy. They don’t have time. It’s like, “you don’t get to write my story for me, right? Like, let me tell you what I can and cannot do if I have to say no, I’ll say no.”
Jessica: And then the third thing I’ll say is, you know it’s important for you to share with your colleagues, but it does not need to be water cooler, gossip, conversation. No, no. I’m saying pick out the one to two people that have been you know your best friends at work, because we all have that one person or, you know, your trusted circle of people, and share with them, and however much you want to share with them. But I say share, because, again, when the crisis comes, you want for people to be able to step in, for you, to delegate tasks, so that you yourself are not the one that’s stressed. And so to synthesize all of this. I think the headline is: Caregiver, It’s important to communicate, but communicate with just like I’m sharing the knowledge. “I’m not sharing for you to do anything different for me.”, And then communicate also what you want to be true, so that people don’t take you out the running, you know, for things when you didn’t ask to be taken out the running. And then, that alone, you’re now opening up the conversation for people to check on you, for people to be curious about what you’re going through, for people to, like, you know, be concerned about you, which goes so far in the workplace, and I think we underestimate all of that.
Allison: Yes, thank you. I have said that myself to people who have said, “Well, I wasn’t gonna offer you this thing. I wasn’t.” And I have said, you know, “Let me be the one that gets to decide that, you know. I might say no to that trip or to that offer, you know, the opportunity, but let me decide, right?” And so I think that’s a really important piece you said, you know, like to not necessarily have it be that you’re asking for something different, but I think that sometimes there are times as caregivers that we might want to ask for something different. And so you know, what might that look like in a moment of, you know, like you said at one point -before it was cool, before the rest of us were doing it, you were working remotely. You know, that was something you had to ask for. And so do you have any thoughts about how caregivers can potentially ask for adaptations or flexibility to meet their caregiving need without, you know, still showing like I’m competent, but I’m going to actually be able to be more competent if I have this flexibility or this, you know what I mean to your thoughts on that?
Jessica: Yeah, I think. So what I will – I don’t want to hide the ball here. What I will say is it was my manager who said, “you should work from home. Oh, you can work from home.” And I said, “really?” And he was like, “yeah.” And he, I’ll tell you why. He said that “It’s because you’ve, you’ve proven, Jessica, that you that you are committed to this place. You’ve, you’ve put in the work, right? You are a trusted employee. Obviously, you’re high performing.” And so I say this to say that even if you’re not a caregiver, the work that you do now is laying the foundation for if you do become a caregiver, right? Because there has to be like trust and like belief in you as an employee, for trust to be given to create adaptations or adjustments for you. So, I say that like with all love for all people, but you gotta, you gotta do your job and do it well at all times, so that when it’s time to make the ask you now can say, “As you know, I’ve been a caregiver, or I have this current responsibility. In order for me to show up really well and continue to do X, Y and Z job here I need for these accommodations. Or would it be possible for me to actually work from home two days a week so that I can do, you know, A, B and C with my loved one?” And you know, because you have the track record, the answer will likely be “Yes.” And if you’re hit with a no, it’s like, can you explain? I mean, engage. I don’t want to do like a role play, but like, I engage in a conversation of like, “Let me be clear around like, my ability to be effective as a worker, right? If I’m able to do these things, versus my brain and my focus being all over the place.” And nine times out of 10 an empathetic manager will be like, “Yes, of course, absolutely.” Like you’re not asking for 10 weeks off, right? Like you’re asking for just a flexible situation. I also think that it’s important to speak with context, right? Like, never assume that people are tracking your journey. Never assume that people know what it’s like to be a caregiver. It is your job employee to paint the picture. And so, like, whenever you enter into a conversation asking for adjustments, changes, flexibility, you have to name “here are all the things that I have done while carrying this. Here’s what I’m like hoping to do. Here’s what I need in order for me to do this really well, right?” Like you, you can’t assume I just like, make the ask and hope that like people just like, understand. You have to assume no one understands. So overcommunicate to get what you need.
Allison: I keep thinking about, did you see that movie, the Richard Louis movie? Either of you the one. Do you know?
Jessica: I’ve seen clips of it.
Allison: I’m trying to remember the name of it. But he was a big time TV reporter, and same like he was flying across the country every week. And I think finally, it was his boss. And again, it was because his boss had been a caregiver that his boss was like, “here’s what you need.” You know what I mean? And so I think you’re right about painting the picture is that if we’re fortunate enough to have a boss, a manager who has walked this path, you know, they’re going to be more likely to say that. But if not, to paint that picture of here’s what this is like. And I might not be able to sit here in this cubicle from eight to four, but in the evening after I you know, after these responsibilities are done, I could get still get this done, right?
Jessica: I also tell people all the time, I’m just like, get clear about what winning looks like. It’s like. I think that especially when you’re carrying multiple responsibilities as a caregiver and an employee, we want to win at everything. We want to do everything right. But I think for you to be able to manage your time, for you to be able to right size the energy you want to spend on things. I think it’s get clear about, “So manager or team leader, like, what does getting an A on this project actually look like or like? What does winning or being successful at this you know, thing that we’re doing look like that way?” You can then say, “Okay, great, I was about to go 100 times harder. I could actually scale back and put that energy into something else.” And so I think a lot of the responsibility, caregiver, is on you to, like, get clear about where are the goal posts, or, like, what, what actually needs to be true, so that way you can make a better plan for yourself. Because we can’t expect for employers to have the answer for us, or for other people to solve our problems, or what you do have control over is how you choose to organize your life around the realities of what you’re responsible for.
Allison: I think a lot too about like what season we’re in. So for some of us, we’re caregivers, and this is chronic, and this is going to be decades, right? This is, this is the long game. Some people it’s more of a short term thing. And so to think about, Okay, in this season, maybe I can’t work full time, maybe I can’t travel, maybe I can’t this. That doesn’t mean that this in my life will never happen. But it just means in this moment for this, these months, this years, whatever, my priorities in the way I’m going to spend my time are going to be different. And I think that we’re sold, a bit again back to capitalism. We’re sold this like, “You have to be on this track and, you know, like it’s going to go this way.” And it doesn’t have to look that way, and it can look a lot of different ways. And there can be years in which we do less or more, or whatever, right? Yeah, yeah.
Justin: Jessica, I’m curious now that you left this job that you had for all these years, that you had followed this path through, like, now that you’re not in that role, like, What do you miss about that job and that life, if anything?
Jessica: Yeah, you know. So I’ll say I was very privileged to be promoted multiple times and to grow and to be developed really well and really quickly. And so I think that there’s something, there’s something about getting access to lots of information and resources and development quickly and over time. Because I feel like, I feel that I can do anything that I want to do, right? And I think that that’s, that’s a true testament to the place that I worked. I also miss, you know, I when you leave a place that’s really high achieving, and you leave a place where people – there’s a certain like work style and the way we do things. Then when you leave that bubble, you’re like, “Oh my gosh, no one does that.” Yeah. You just realize you’ve been in a bubble, you know, for 11 years, and you’re like, “Okay, I’ve got to learn how to work with people who haven’t been in this, like, system structure.” And like, that’s probably been the biggest, just professional culture shock, really. So I miss, I miss working with like minded people who were on the same page, who had a similar working just, like, understanding. But I mean, that’s, you know, that’s in the grand scheme thing that’s so minute now for me.
Jessica: I will say, to be completely transparent, what I miss the most is having a consistent paycheck, having benefits, having, like, insurance that. I know I was paying for, but, like, you don’t really realize how expensive insurance is. You know, this is a symptom of care in this the United States, right? Like I chose to walk away from a luc- not lucrative, but like a high paying job with stability. And I’m now at a place where things are very unstable, and I am relying on, like contract work to pay my bills, to survive. My mother doesn’t, my mother as someone who was 70 How old is she? She’s 75 Yeah, well, she’s 76. she’s 75. Why do I keep doing that. Oh my gosh, someone that’s like 75 living with late stage Alzheimer’s disease, who was an educator for the majority of her life, didn’t qualify for Medicaid, and so literally, all of her care comes out of pocket. And I am paying for that, right? Like, we’re not even talking about the cost of care. Like, that’s why I hold it. But like, I I need people to understand that. Like, yes, I left my job, yeah. And the thing that I missed the most is the stability of having a job. So people are like, “Just flex, go part time.” And you’re just like, “Do you know the implications of that? Are you able to do that?” So, yeah, no, I’m I miss a stable you know, I’m sure,
Jessica: Yeah, so I was, as I was leaving my job, a lot of what I noticed in elder care, in Alzheimer’s care, in the dementia space was just how unequipped caregivers truly are. Including myself, or like, I mean, I’ve been on the training for 10 years. A lot of what I’ve done has been through trial and error. And like, you don’t know what you don’t know, you know. And I just think that, like, there’s so many people who are about to be hit with caregiving who truly are not equipped or prepared to navigate this journey. I mean, like, regardless of the disease that you’re caring for, and I never want for people to be floundering in the ways that I was. So for a good chunk of my work, it’s like just through out of it, like caregiving advocacy and ensuring that I’m telling my story to bring light to the reality, so that people can kind of get their own gears turning. I also spend time doing speaking engagements and working now with companies to talk to their employee resource groups or just to their managers, or to bring the perspective of like, what a caregiver might be holding and holding facilitated workshops for spaces like that.
Allison: 100% and that’s the thing, is that when you said, when you said, when people are like, “Oh yeah, just it’s fine, just take this time with your mom.” You know, it’s like, it’s not that easy, right? Especially because not only then are you covering your stuff, but like you said, you’re covering her stuff. And you’re right, the cost of care is ridiculous. And so that’s the thing is that so many working caregivers have to keep working because like… So in situations like, like in my house, like Sean has not been able to work since his diagnosis, right? And so now, like, I am the only bread winner, right? And I we need insurance, right? And so so for in some cases, it’s like being a caregiver means you have to work even more. Yes, even though, on average, caregivers are are spending like, 24 hours a week on average, you know. And we know that for some of us, that’s low caregiving. And so, like, just the finances and the benefits mean that for some, some people, we can’t not work. So it’s this terrible catch 22 we get stuck. You mentioned that you’re doing some contract work. Can you tell us, like, what is it that you are doing now in your in your work life?
Jessica: And then the other part of it, which I never thought that I would say, is like, there’s, like, this content creation, social media influencer life, right? But like, there’s companies who are using, who leveraged me to tell my story to, you know, move their mission and, like, their work forward. And at this juncture, if they’re paying me to do that, like, significantly, then let’s do it, you know. But I’m not like, the person’s like, “I have this brandy.” It’s actually, like, these are products or things that would be useful to you caregiver on your journey, or, like there’s this organization that’d be really great as you’re navigating the grief of caregiving. So I’ll also say, speaking engagements, facilitated workshops and content creation is very much the the ways in which I’m spending my time. I’m beginning to dip my feet into what does it now look like to work with healthcare organizations and agencies around how they work with families. Because one of the greatest stressors is the health care provider coming into the home and not knowing how to engage with an exhausted caregiver, right? And so things like hospice, home health, right, palliative care, you’d be surprised. They don’t get any training around dementia, engaging across lines of difference, communicating thoughtfully and intentionally with families. So there’s a gap there that I think I can start to fill.
Allison: And what is it like for you to use these life experiences caring for your mom in in your career now. Like, is it cathartic? Does it feel vulnerable? Like, what is what is that like to use your like, lived experiences?
Jessica: I think it’s just, I think there’s like, some gratitude of just like, this season of my life is now being used to help other people, right? Like, there’s I, I’ve always had purpose in my life, but I think that there’s a different purpose now to the like, the pain and the stress and the exhaustion. It’s just like I can now use that to illuminate and make things better for other people, right? And get paid while doing it. So that’s great, right? I think it gives this new chapter – because I’m very clear eyed about the fact that, like, we’re closer to the end than we’re at the beginning. I don’t know how long we have, but, like, we don’t have that long, yeah. And so for me to be really, like, intentional about the ways in which we share our story and help other people has very much been what I think laying the groundwork for me to navigate through the grief that I know I’m gonna feel whenever that time comes.
Allison: Yeah.
Justin: So you know you’re doing this like contract type work right now, leading webinars, flying across the country to speak, and yet you still have to care for your mom like it’s a 24/7 job. So how, how does that look? What does that look like? How do you manage right now, where you’re working, doing the care work for your mom, as well as the job stuff?
Jessica: I think it’s, it’s a it’s a tricky balance. I think that I, I am probably someone who has really clear boundaries around like, here’s how I, here’s what I can do, and what I can’t do. Is there a virtual option. If you’re flying me out to do something that needs to be included in the price that you’re paying, or, like, part of the benefit, right? Because I have to now pay, you know, $400 a day for care, because she, Mama needs 24 hour care, right? And so, like, I, I, you know, it’s interesting before stepping into this, like, consulting contract world, I’d be like, “Yeah, of course.” I figured I’ll share my story. And now it’s like, actually, like, “No.” I have to be crystal clear about like, how does it cost for me to leave? Like, what are the, what are the, what are the consequences of me leaving? I need a full time caregiver. I need to prep meals. I have to prep all the liquids. I need to prep medication. It is a significant investment to leave, and so it has to be worth my time leaving. And so there’s that. But then two, being I’ve set some really strong boundaries around like, what needs to be true for me to even consider leaving, and then I often don’t leave for longer than 48 hours. One it’s expensive once you hit the 48 hour mark, but two is, I like to always just be present with my mom as much as possible. And so like, weekend trips are really how I make it work, and that’s if I’m traveling. But so much of it has actually been virtual, which I’ve been grateful for. And I think that even post pandemic, people just like the ability to be home. So that’s worked out for us. But I think that people don’t realize is – and I’m speaking to the caregivers now – it’s like, you’re never just leaving, right? It takes at least, you know, four days to prep to even be gone overnight, right? Like, or even just for multiple, for a few days. And so, you know, I do everything from labeling things around the house, I set out the schedule, prep every single meal, breakfast, lunch and dinner. Prep every single beverage needs to be drinking to control her hydration, make sure the person knows, you know, cleaning routine, rotating routine, sleeping routine. I cross my fingers and hold my breath every time I leave because even though you have a caregiver and you’re paying for care no one cares for your person like you do. And we’re at this stage now, where any small mistake can be grave. Yeah, and so I go ahead.
Allison: I was just gonna say, and then when you get back I would guess it’s not just like you get back and you’re like you know what I mean, I would guess there guess there’s like cleanup. And you know what I mean all of the right, is that…
Jessica: Yeah. There’s like the ramp up, and then there’s like the, like the off ramp, right? So when you get back, it’s like, I, you know, every time I come back, I have to clean my mom, and, like, I do, like a full bed bath. And you realize, like, wait, but I left really clear instructions around how to clean her, right? And I, even though I left all the liquids, you realize your mom is still not hydrated, right? And so there is both the, there’s not like the, like, the physical cleanup. It’s like the, it’s almost like a full check or a scan, like, did these things happen? And how do I make sure my mom gets back to baseline, so that you know she doesn’t, you know, decline, or, like, something doesn’t happen to her. And that’s every trip. And then, you know, that’s interesting. When my mom was still mobile, and she was still walking, like, I would come home from, you know, work trips, and I’d walk the house, and I’d find, like, banana peels in the shoes, or, like, you know, leftover food here. And you’re like, “Okay, this is CG now, like…Alzheimer’s. It is Alzheimer’s thing, right?” Like, or like, I would find mail under the bed, and you’re like, “Okay, every time I come home now I have to check to see, like, where has Constance been around the house?” You know? Now, it’s not like that now, but it truly is. It’s the on ramp to leave, yeah, and then the off ramp to make sure she’s stable when I come back.
Allison: And not to mention that, like, flying across the country is exhausting. And speaking gigs, you know what I mean? Like, like, you’re not just, like, going to a spa. You’re like, standing up in front of stage, on stages, in front of people and speaking, right? It’s like, a huge deal. And so, you know, I appreciate that on Instagram you share all of that so that people aren’t just like, oh, look, there she is speaking. So great. It’s like, okay, yes, and this came at a cost, right, literal and a figurative cost, right? Absolutely, I know that for me, that working while caregiving, one of the hardest pieces is that I feel like I’m not reliable. You know, I think I really want to be reliable. And when I sign up for something, I’m like, “I hope I’ll get to be there, right?” But I feel like everything has an asterisk, both because we never know what’s gonna happen with Sean, but also I feel like my health is not awesome because I have been a caregiver for so long . And so I hate that that, like putting a gig on the calendar is exciting, but also sort of terrifying. Is that uncertainty something that you experience as well and if so, like how do you manage that?
Jessica: I always whenever I, whether it’s with friends, or even just like you know, work things, or whatever it might be, I always say like, “As of right now, as of today, at this time you can lock me in.” But I’ll say, like, “If anything happens to my mom, I will not be there, right?” And I just, I just say it up front, you know, and that way, when you know if something happens, they’re not surprised by it, and it releases me of the pressure of having to still show up. Because I told you this might happen, and you know from the front end that she comes first. And so I don’t necessarily feel that, but I, what I, what I do feel, though, is, like, before I even commit, I was like, “Can I do this?” Or like, what sacrifices might I need when I have to make or, like, you know, what? What is this? What does this mean for my mom, right? Like, and so I think I probably do, I gotta, I go down this whole like list in my head before I even consider anything. And if, you know, you Doomsday, all the extreme scenarios, and if I’ve scared myself enough, maybe I don’t, I don’t do it. Or, you know, I’ll say, “I’ll try and, you know, if not, I can’t.” I do think that I’ve had to also release myself of this feeling of letting people down, because you realize that people who are truly empathetic. And people who see you, you’ll never let them down, Right? Like, in fact, that they’re way more understanding than I think we give credit for them to be. And so I think it’s like, I would often be like, “Oh my gosh, I’m so sorry.” And they’re just like, “We get it.” And you’re like, “Wait, it was that easy, you know?” And so I think sometimes, as caregivers, we as caregivers, we hold so much of other people’s potential reactions, and you realize, like, “oh, wait, they weren’t. They weren’t even thinking half of that stuff.” And so sometimes what I offer is, like a don’t worry about it, just say the thing you need. And most people will adjust. Kind people will adjust. And if they don’t adjust, they weren’t for, they weren’t for you. Keep it moving.
Allison: Yep.
Jessica: Well, I think a benefit of doing caregiver work is that if you have a caregiving emergency, those are the people who are going to get it right. It almost turns into like, a like, fodder, right? It’s that it’s like, oh yeah. It’s because of caregiving that I can’t actually do this caregiving work gig, right?
Jessica: Yeah, but I’d say for friends, too. My other job, I teach a fitness class at the YMCA. Like my fitness class, they know that I’m a caregiver, right? Like, I was a bridesmaid in my friend’s wedding – heartbreaking. Couldn’t show. My mom was in hospital, right? Like, but they got it. And so I think it goes, it goes back to my earlier point – if this gets in the podcast – communicating with people about your reality allows people to have empathy, to get it if you were. And I, and this was me for a long time, like I didn’t tell anybody how hard things were. And so then I was, I was getting resentful and upset that people weren’t showing up for me, but no one knew how hard it was. No one knew that I was struggling. And like, sleepless nights, insomnia all the things, and it’s like, oh, wait, Jessica, people can’t show up for you if they don’t even know what you’re going through. Yeah? Like, people can’t read your mind, right? And so you know you can’t, you can’t let people down if they don’t know.
Allison: Yes, totally Yeah. Good point.
Justin: So you’ve certainly talked about the benefits of working while caregiving, as relating to stability, income, benefits, that kind of stuff. But there’s also research that has shown that there’s other benefits to caregiving. Caregivers continuing to work because, you know, they can maintain a sense of self. It gives them a chance to connect with the outside world, use different parts of their brain. All of that is that something that resonates with you? And have you found aspects of that that were true while you were working?
Jessica: Yeah, I mean, work, for many people, is an escape. Like going to work, or doing work things, or whatever your work experience is, is often a chance to use your brain in a different way. Actually, for me, there were moments where I was like, you know, my mom is no longer verbal. So my only conversations are with people at work. If I can’t talk to my mom,My mom was a talker. Like, there was always, she was always talking. And so now for my only adult conversations to come through zoom. And so I do believe that having the, or even for me like when I was traveling, I would be home for seven days and gone for four but like, when I got on that plane, it was, like, “(sigh), I get to be Jessica again. And you know, like, there’s like, there’s a chance to kind of, like, switch it on and off, which is so important. Because it is , what I’m gonna say, work can kind of be respite for some people. And so I do think that there are benefits. I think that the benefits become blurred when your work becomes your everything, and you don’t have a sense of identity outside of, like your title and your job. But I think, like the fulfilling parts of “I feel useful, I can do a task and complete it and see like the output, right? Like I can read, I can set a goal and reach it.” It is so satisfying in a world that’s so uncontrollable, right, like, or when you have so many unknowns in caregiving.
Justin: Yeah, that certainly when, when I was working, while Sarah was very sick, like the control piece and all of that. Like, here’s an aspect where I have control over, not total control, but I can control things somewhat. Versus when I was at home, it’s like, this is all out of my hands. I’m just like, responding. Yeah, absolutely.
Allison: And i remember when I had my other job, and I would be training, you know, I was training on early literacy, right? A totally different world. And it just felt like, almost like I was, like an actress, like I put on a different like, I put on a mask, you know. And people would come up at the break and be like, how’s your husband? I’d be like, “Oh no, no, no, nope, nope, that Allison is not here today.” It just about, like, a different role, you know. And it felt really cathartic to sort of like, step out of this into this other role for the day, and just like, left that other Allison behind for a little bit, you know. Yeah, absolutely, yeah. So, Jessica –
Jessica: For some people, though – sorry. For some people, work is like, you’re like, “This is stressful. I can’t do it right.” Snd so I also, I get it for some people to be like, “I don’t understand that what you just shared.” She was like, I can see people be like, “the work is not the thing that is bringing me joy or peace or anything. And so I need to step away from that.” And that’s, that’s okay too, right? I also say that, like, sometimes caregiving gives you the permission to pivot. I think that depending on your generation, right, like, there’s so many types of caregivers and like your approach to life, but I think that sometimes you need the nudge to do something different and being a caregiver, right, like you realize I’ll have a finite amount of time. This is my reality. I need a job that’s going to allow me to X, Y and Z. This might be the permission to say, “Okay, let me go do that thing, because I’m not gonna be able to be a good caregiver if I don’t have that thing.” I cut you off. Go ahead.
Allison: Sorry. No, it’s fine. Thank you for saying that. So somebody said, really, frankly to me the other day, they said, “Allison, you’ve built a business about caregiving, and Sean’s not going to live forever. And so then what?” And so I if, if, and if this is too personal, you don’t have to answer this, but I’m kind of wondering for you something similar, the work that you do right now is around caregiving, and you’ve been really clear about, you know your your mom has less time than more. And so do you think about that and about how what this might look like for you in future stages?
Jessica: Yeah. good question. You know, this is i. Two thoughts come to mind. One, this is bigger than me, and I am clear eyed about that. Like this has been my journey. And I think there’s, I am, I believe, and my story is so unique, yet it’s not. Like to be a caregiver of 26 to be caring for my mom for 10 plus years and to still be on this journey and to be navigating Alzheimer’s disease the healthcare system in this way. These lessons are not in vain, right? Like and I deeply believe that we have to have a fundamental shift in the ways in which we support families, young people, people of color in this country when it comes to care. And I believe that there’s no coincidence that, like, I’ve had like a life of public service, a life of public speaking, a life of managing people in teams. Now, combined with like this life of caregiving, it sets me up really well to literally transform systems of care, whether that’s like within healthcare agencies or whatever. And so I say this all to say that like I deeply believe that my next chapter is a marrying of the two. And whether my mom is here or not, I’ve like, I feel energized by doing that work because i i as an Enneagram 8 and as a Taurus, right, like, and as a blue child, like, I deeply believe in justice and like things being fair and right. And no one should ever feel like they’re not getting their just due when it comes to being able to, like, show up well for their person. Yeah, and so I feel say all that out loud, like I feel energized about what is to come, even beyond this caregiving season. Yeah,
Allison: Yeah, thank you for sharing that.
Justin: So we also, at the end, always like to, you know, speak to supporters. And so what advice or what would you like to say to people who are supporting caregivers, maybe specifically as it relates to the work, the career, that piece of it.
Allison: And supporters meaning, like, sort of informal. I mean, it could be formal, but also more sort of like friends and family who are listening, you know, people who have people in their lives who are caregivers.
Jessica: I always have things to say to supporters. Think the first thing is the person that is a caregiver, right, like however you’re supporting them, just because, and we see this all time, just because they’re holding it well, it doesn’t mean that it’s not heavy, sure. And for someone who is truly balancing caregiving in their career, they have learned to balance enough to look like things are okay. And I can tell you from experience that it things are likely crumbling behind the scenes. And what your people need from you is to be consistent. So continue to show up, right? Continue to you know, offer your support in tangible and concrete ways. Continue to ask them out to lunch or events or, you know, keep them included, whatever, however you’ve been supporting them. Don’t give up just because it looks like they don’t need something. I would also say with that, if you are someone who supports someone in a work environment, like, slow down enough to ask them how they’re truly doing. And I know that, like, the person might be like, “I’m fine.” And if they say they’re fine, that’s okay. But like, the act of like someone seeing you while you are carrying so much goes such a long way. And maybe they’ll say they’re fine this time, and the next time they might actually, like divulge all the things, right? But, like, it’s the truly check in on your people. And the last thing I’ll say supporters, is that someone at some point, we are all going to be caregivers at some point in our lives. And right now, you might be a supporter of someone, and you know, one month, one year, whatever, down the road, you might be the person that needs support. And so I’m a firm believer of like, what are the deposits that you’re making. How are you showing up for people now? So that people show up for you when it’s your turn. And so like, and that’s not saying like, do things make people show up. It’s actually just like a when you operate from a place of integrity and kindness and seeing other people, you never know what the universe has in store for you. And so like, truly show up well and consistently and thoughtfully for folks, and the same will be true for you when you need care. And so like, almost just like give so that you can then receive down the line.
Justin: Thank you so much for being here today with us to talk. This has been just a wonderful conversation. And, yeah, it’s something that I think would have been really helpful for me a number of years ago, when I was trying to balance all of this. So I just, I hope that people out there can take some things away from this and kind of help, that people can get some help from this. So thank you.
Jessica: Thank you guys for having me. This was fun.
Allison: Is there anything that we didn’t bring up today around this topic that you want to make sure that you say or share
Jessica: The thing that I often say, and I know we use the phrase like balancing career and caregiving, but like, there really isn’t a balance, and so I want for people to release that pressure from themselves, to try to balance it all. There will be moments when the scale is fully on the caregiving side. Like, there’s like your full attention needs to be with your person and or you to keep above water and like, that’ll be okay. So it’s almost just like, it’s gonna tippy to it’s gonna whatever. It’s gonna teeter totter, right? And that’s okay, because it’s you should not be striving for the perfect equilibrium. What you want to be striving for is like, “Am I clear about my priorities? Am I clear about what matters most to me? Am I clear about what my loved one needs most for me? Am I clear about what winning in my job looks like. Okay, cool. Now that I know that, how do I now redistribute my energy so that can then show up in the right places, in the right times? And that might mean some days, my job gets a little bit more, or my person gets a little bit or, hell, I get a little bit more.” Yes, right? And that’s, that’s, that’s totally okay and necessary and normal. And let’s debunk this idea of everything having to be perfectly in equilibrium, because it will never be. Yeah.
Allison: Even you have said the phrase like, winning at your job, and I think that sometimes, like, maybe we’re just getting through, yeah,
Jessica: Like get a C. C is still passing.
Allison: Yes exactly. Hey, if people are on Instagram and want to follow along with your story, how can they find you?
Jessica: Yeah, you can follow me on Instagram @careercaregivingcollide. LinkedIn: JessicaCGuthrie. Website: Jessicacguthrie.com.
Allison: So if people want a speaker, if they you know virtual a virtual speaker.
Jessica: I would like to work with your company in any way. I’m more than happy to chat.
Allison: Yeah, thank you so much for being here. We appreciate it. It’s good to talk to you. Yes, all right, we’ll see you later. Have a good day.
Jessica: You too.