Confessions of a Reluctant Caregiver
The Confessions of a Reluctant Caregiver podcast offers a candid, unfiltered space to confess the good, the bad, and the ugly of being a caregiver through storytelling, guest interviews, and information sharing. JJ & Natalie are a dynamic duo of sisters supporting their mom living with Parkinson's and a husband who survived cancer. Along with their guests, they discuss their shared experiences in caregiving. Viewers and listeners alike will relate to our reluctance, be affirmed in their ability to be caregivers and gain the courage to confidently step out of the shadows to express their own needs. You are sure to laugh, cry, and everything in between but in the end, all will leave feeling better for the journey and part of the sisterhood of care. So grab your favorite guilty pleasure, and let's get to confessing!
Confessions of a Reluctant Caregiver
After the Confession: Jessica Guthrie
Thank you for your support! Here's the link to watch the behind-the-scenes bonus episode on YouTube: https://youtu.be/TJ-zMIDe6tQ
Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
Kristen daukas, Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver podcast, and you're listening to after the confession. Now let's listen in, as it was just getting good time to sit in and listen in after the confession. We are back with Jessica Guthrie, who we absolutely love. She's our sister, just as long as she doesn't
JJ:give Natalie her address. I Jessica, I was going to tell you that's recording. Good Lord, she will show up at your house. She'll, she'll, like,
Natalie:show up at your house. Sorry,
Unknown:don't, don't tell her, really. Hey, you
Natalie:know what? I would go to the spa. Though I'm a supportive like, I am a caregiver to a caregiver. I'm really good at that part. Like, oh, I'm sorry, did you need someone to go to the spa with you? Yeah. So I have a
JJ:question So, and this is, I know that you have when caregiving and career collide, but tell me you've got a lot of others. Like, I just saw something on LinkedIn. You've got other stuff going on, like, you are involved in so much. You're like, an entrepreneur. Tell me other things that you're doing right now, because you're like, all over the place. You're like, you're like, she's standing up for everybody. Just wait, she's changing the world.
Unknown:Yeah, support that. So I left my full time job at the end of May. It'll be a year here soon I left. I was a vice president and chief program officer. It's like, I was like an executive, and my mom had started to decline, and I just, I thought I was a great multitasker, even virtually, and my mom was still getting put on the back burner. And I was like, I can't, I can't keep doing this. This is also like post hospice, all things. And I said, I need to be more proximate. So, like, I stopped doing this whole, like, nine to five working thing at the end of May, I will tell you the first, like, seven months. Last eight months, it's been deprogramming. What does it like mean to be successful? Like, what does it mean? Like, who am I outside of my identity of a job title and a promotion? Like, like, I had to figure out who was Jessica. I share all this to say that, like, now it's like a Oh no. I am deeply convicted about advocating for family caregivers. I really care about the system of health care being better and medical professionals truly showing up and like being better for families, right? Versus like families having to do families carry so much burden to even just show up in a doctor's appointment when it's like, Hey, doctor, if you just took, you know, an extra couple hours to increase your own cultural awareness and, like, your own communication skills, people would be more likely to show up to the doctor and, like, engage anyway. That's a tangent. But all things that I'm doing, I think, currently, right now, you know, January and February, I spent a lot of time building out workshops for caregivers and so, like, really accessible, bite sized information, like, how to navigate and be prepared to navigate this system, understanding home health, hospice and palliative care, right? Like, how do I balance career and caregiving? So, like, I was I was test. I was testing things out. Like, do people like this live learning style. I realized that, like, That's exhausting. I think I'm gonna, like, buckle them up and sell them that way so that people can learn on their own, and then spend my time very much consulting with companies. I think that there's a lot of people who want to create solutions for caregivers, but don't have caregivers working in their organization, right? There's a lot of people creating apps, a lot of people creating tools and resources. Yet you have people who have never been a caregiver on the other side creating these things. And so like, I've been lending my expertise and perspective to help, like, strengthen the tools that people want to create for people like me, which I think is really helpful. And then I've been using my voice to advocate and, like, be a part of, like, policy chain. We're gonna have a conversation on Capitol Hill in a couple of weeks and talk to lawmakers about the caregiving experience and prioritizing us and upcoming legislation. So I am kind of doing a little bit of everything. Yeah, yeah.
Natalie:That's pretty that's pretty awesome. And I think cultural competence, oh yeah, let's, let's get a little uncomfortable with that. Okay, let's talk about because you mentioned that. And I'm like, Yeah, because there's, there is physicians understanding and being willing to take the time, even though we know the system is set up from a billing standpoint, and I've talked about this before, the CPT codes that physicians do that are billable are not supportive of really going in depth, most physicians are going to plan scheduled appointments, 15 to 20 minutes for your PCPs. I mean, I think your neurologists are going to do longer our moms, Dr Barbu, is awesome, our neurologist for our mom, and she spends so much time with mom, because she needs it, but those physicians should be reimbursed for that. The other side of that is that caregiver consultation is really not baked in to CPT codes, although there was a recent passing of legislation that went into play in January that allows for training for caregivers that physicians. Patients can do, but that's still, in my opinion, while they pass it, and it sounds really good, it's still really messy. It's not clear. It's who's going to be responsible for it and that sort of thing. So I think it's still really messy. And there's no behavioral health component to it, for example. So you talk about your mom and the physical health symptoms. But there's also, there's mental health components that we that come along with it, regardless of diagnosis. So we talked about a little bit about depression you probably got, you got anxiety in there and and that really escalates. And with our mom, for example, her medication exasperates, it really brings on more mental health and so, like a mood disorder, like she can be aggressive when she has too much dopamine. Yeah, and I don't mean that in a bad way to talk about our mom. Dopamine dysregulation disorder is real, and it can make you very aggressive if you're not careful. And so I think about those things just kind of as your your your chatting, and I'm like, Oh, I love that. But let me ask you this. I'm going to go flip a little. It a little bit different direction for a sec. We didn't ask this. And I love to ask this question, what are some tips, some resources that you would absolutely say, Guys, these are things that you should do. These are things that I wish I had known as well, not even of what you would tell your younger self, but what are things that you wish you had known about earlier?
Unknown:I think the biggest thing that I wish I would have known earlier is that just because you have a diagnosis does not mean your person is dying tomorrow. And I say this because I think that, like when you get a diagnosis, you often leave with, like, the diagnosis and a couple of pamphlets, and it's like, okay, good luck. And then, like, that's what it feels like. But then you you spend hours on Google, like, going down these, like, Doom traps, right? And so you end up, you end up thinking about the end, and then you lose sight of the person in front of you now. And so this is less of a resource, more just a reminder of like, there's still moments to be made, memories to be had. Your person still deserves to be treated with dignity and respect, right? Like you just still deserve to, like, have have the space to talk to your person. It might look different, right? You need to evolve and adjust, potentially, your approach. But like, your person is not gone. Your person is still capable in in the new stage that they're in, but you have to meet them where they're at and not treat them as if they're dying tomorrow, because they will feel that they like they feel it, and then they then react to that right, which like he's a mistake I see people make all the time in terms of, like, tangible resources. I think that getting clicked into, like your local community will matter, because every place is different. And I think one of the greatest frustrating things is like, well, go here, and you're like, wait, but you're here is different than my here where I live. And so like, get clicked into your like, local area agency on aging to understand what are the resources in my specific town. And then, like, set up appointments, like in the early stages, to meet the people who understand the resources, even if you don't need them. Now, it's easier to talk about that stuff before you end up under stress and duress, you know. So that's another piece of advice. And I think you know, social media has changed a lot. It's changed a lot. And, you know, it's also a generational thing. However, the greatest community I found was on, like virtual it's So Instagram for me, for some people, they really like, like the virtual support groups and or like the support that comes from Facebook groups, but get clicked in virtually so that you realize that your world is not as small as it seems. I think perspective allows you to, like, just release some of that pressure you're holding on to.
JJ:Do you think there's a lot more because you are, you are millennial, but I know that's something we hear where everybody when you go into a doctor's appointment, for example, and you and I talked about this, talked about this, that you're there at a doctor's appointment with your mom, but they don't anticipate that you're actually the one that is not to say, in control, but they kind of they underestimate you and but do you feel like there's a lot more respect out there now that people are realizing, first of all, the younger person can be taken care when you are that young, but also resources for millennials out there. To say, is there recognition for you guys now?
Unknown:I think it varies depending on who you talk to. I think that you know when i What do I want to say? I think that there are a lot more people producing resources and support for people that are younger and so, like, for instance, like, the Alzheimer's care network has this amazing, like, EGOT. It's like, 300 pages. It's really accessible. You're like, Oh, I thought that didn't exist 10 years ago, right? Like, I think people are putting out accessible content. Like, I think about, you know, Adria Thompson be like, Kristen reels, like, like, so like, in. Information about just different experiences are becoming more accessible in ways that make the most sense for me and how I engage so that is helpful. But the other side of that coin, the idea of like respect, I think that, you know, the younger caregiver experience is still not talked about and often hidden in the outskirts. Because even when I sit in these spaces or school, like, you know, go into policy conversations or like, you know, I was in a conversation early in December, and everyone in that room was 40 plus, everyone that room was majority male. And you're like, This is not, I mean, and you think, and you think that my experience is, like, unique and bright, and it's like, yeah, because I'm telling the story. Like, imagine if you had more people in this space like me telling the story, you would realize how diverse and how challenging this is for people who were 30 plus years old. You know what I mean. And so I tell this, those are random examples, but I just think that, like the people who are making decisions, the people who are really like, still holding power and talking about care and respecting caregivers and holding space for caregivers, still do not look like me. We've got a huge like gap, yeah, still, yeah.
Natalie:I believe that I 100% and I think also individuals of color, oh, I don't think that you see it. I mean, look at all I look at LinkedIn, and I love all the people who are trying to do lots of things. It really is. And I'm going to say this, Jess, this is where I was getting back to with the doctors, middle aged, with a bunch of and that's okay, that's okay. Well, we're, well, it's okay. But it's like, where? Well, I mean, honestly, JJ is middle age. I am not. Jessica, probably lean more towards your age and but I think it has to be more diverse, yeah, and I think that's, that's one of the things that we're really trying to do, and it's hard to pull our fellow our friends of different backgrounds to come, to get them to even come forward and have their voice heard. And, I mean, this is my question to you, is, you know, how do we engage our younger people? How do we ensure diversity is included in that? Because everyone's experience is different, you and your mom. It was you and your mom. You did not come from a two parent family. You lived in pricey Northern Virginia, because, trust me, it's cheaper in Southwest, and their accents are all different than mine. But how do we engage more? How do we reach more people? Yeah, and it goes back to cultural competence too. Yeah,
Unknown:I think, you know, it's interesting. I if you look. So I'm gonna go back two seconds to make the Connect. The circle Connect. When you look at most care agencies or pamphlets that get handed out, who do you see on the pamphlets, in terms of images, who get cared for
Natalie:old on old, very Caucasian, very wrinkly, like somebody needs some here
JJ:that that is one of the things that really bothers us. Anything, anytime that we have some advertising produced, the first thing they send to us is old Caucasians. And we're like, No, at least make the
Natalie:first. I'm gonna, I'm gonna go, even worse. Oh, wow, that's exactly what they are. And I'm like, well, it's why we did our confessions. I mean, number one, the name is catches your attention. And number two, photos do not look like characters. And we're like, we had a bunch of makeup. So go
Unknown:ahead, Jessica, yeah, go ahead. I start there because I think that, like from the very beginning, people's perception of who gets cared for, who deserves resources, who gets listened to, is already skewed by, like, the stories and images and the ways in which we market who gets cared for. And so what does that actually do? It creates really interesting stigmas and, like, misunderstandings about resources, about who can help you, about seeking out early diagnoses, right? Like, so there's that I also think that, like, it requires people, and I'm speaking from experience, it requires medical professionals to make sure that they are meeting people where they're at and seeing them, and for all that they're entering in with. What I mean is that strong example, my mom. We went to the emergency room. My mom had pain in her leg. I didn't know what the pain was coming from, because, of course, she can't really tell me, but I knew her leg was hurting. She was pointing to it. The doctor sent us home with narcotics, and was like, maybe she needs physical therapy, because I kept advocating for her. I was like, There's something wrong with her leg. We found out that she had a blood clot, a DBT and, like, actually, all that was revealed via imaging. But the emergency room doctor, because the blood clot and, like, the swollen area looked different on her leg than it did on white skin, he didn't take the time to fully examine her, and so he made a bunch. Of assumptions, and then just sent us home. Now it was a small DBT, everything was okay, but that could have been detrimental, and I think it actually represents something bigger around like, how can medical professionals also, like, slow down, listen to patients and families very much. Like, recognize that some things look different on different types of skin, and people deserve to have, like, full, comprehensive workups done. I share all those examples to say that creates a mistrust in the medical system. It creates a mistrust in other people, and because people have not been forced to engage across lines of difference, if no one's pushing the boundaries or taking the intentional steps to engage in communities of color, to spend time to build relationship to right, like understand people never really feel seen or connected. And so it just continues to perpetuate, like a divide or a disconnect, when in reality, what we do know is that, especially for dementia, the number is going to continue to rise. And frankly, people of color are twice as likely to have or live with some form of dementia, and so it's going to require people to step outside of their comfort zones, to step outside of what's been easy for them, to actually recognize that just because you might look different doesn't mean that this disease impacts you, like any less or worse, it actually means that, like, oh, you deserve to be treated with like, humanity and dignity and respect, and I have the resources to slow down and help you do that anyway. I have a whole bunch of thoughts, but I just think that, what does it require? It requires white people who have position and power and access, because that's what it is, right? Like, let's just call it out. Who we're going to say this is bigger than me, and this needs to look like the world that we live in, and it's going to require me to make some friends to say that I don't know something. I don't I don't understand that. But let me pull people in, and more than one, pull in the masses to help you become better and more equipped and, just like, more aware. And then also it requires people admitting when you don't know something. Yeah, I might be deemed an expert, but, you know, I don't know that. Let me pull in X person who's actually an expert in that.
Natalie:Sorry, there's so much more, but I'll stop you know, Jess, I'm going to tell you, I'm glad you took us to church this morning, because you did that. And here's the thing, and it's, I think the conversations around race and around age are really uncomfortable. And people, and I say this, I think people don't are uncomfortable in talking about it because there's something there, because they know it's there, sure. And I think especially, you know, I think it, it impacts everyone differently. I think that's really important. But I think it's so important. It's why we want to have these conversations. To say, No, we have to, we have to talk about it.
JJ:I think, well, and I think for me, the funding streams are different, and it's for people of color, it's for Hispanics, it's for Asians. And when you look at all the research, you have to wonder, why is this not it's there. The numbers are there. It's kind of like what Ali Amati said, the numbers are there. Why are we not recognizing that, that the cost can be higher if the income levels are lower, there's more of an impact on the families. So it is, it's a it's a definite, it's just something I don't like. Natalie said, I just don't understand it. And giving us ways like what you said, if we have voice and we have access, is just to make sure that message gets out. And that's for all of our friends in the caregiving community that do what we do. You know, like you said on LinkedIn, when we see them, everybody needs to get on board, because it is our responsibility to make sure that everyone is taken care of the way that they it's fair. It needs to be fair and just because everyone deserves the same amount
Natalie:of care well. And the word is regardless, regardless. Yeah, it is regardless, regardless. And that's regardless, regardless of ability. Rather, it's race, gender, age, ability to pay, regardless it is, it's time that we step up. And it's not just an aging population. It's your chronic health, your complex health, your disability, individuals with disabilities. Like, yeah, it's, it's so, it's so, like, I feel like it's cancer. Cancer doesn't discriminate. It doesn't discriminate. Like, caregiving does not discriminate. It's the most inclusive club. Like, welcome to caregiving. You're welcome. We're taking in. You know, when you see those groups, they're like, Oh, we've had 15 people join the group. And I'm like, Facebook could have a group for care. We've had 1 million enter today. Like, welcome. You became a caregiver. You're one of 1 million. That's how I feel. Yeah. So, all right. So, Jess, we love you, and I want to do, like, I'm gonna figure out how we do more together, because I think you're just a freaking powerhouse. And I want to, like, lift you up and like, I'm like, Dude, what are the connections that you need from us? How. Do we how do we support you and lift you up? And doing that? How can you lift us up? I look at things like that, because the way we really believe in the phrase, all ships rise together and and so especially, especially the women, we're all about pulling the women right behind us, right behind us. So I'm like, we are. I know it is shocking to everyone. We are a touch older than just, I know, don't let the wrinkles fool you. But you know, I think it's, I think it just comes back to say, how can we support one another and to because ultimately, it helps the whole and it helps generations behind us. Yes, what we're doing right now is helping the people who are our future caregivers, and they will need care at some point too. So, Jess, thank you so much for being on us. Man, this has been a hell of a show. Thank you so much. I'm fired up. So Jess, thanks for being on us and guys, thanks so much for listening to after the confession. I can guarantee you some of those comments are going to be on so people are going to be like, I want to hear that after I'm like, Yeah, all right, guys, thanks so much for listening, and we'll see you next time. Bye. Well, friends, that's a wrap for this week's after the confession, thanks so much for subscribing. It's your support that makes this podcast possible. And don't forget to visit our website to sign up for our monthly newsletter. Sign up for the free sisterhood advantage discount club, and of course, connect with us on Facebook, Instagram, LinkedIn, Tiktok, Twitter and Pinterest. You'll also find the video recording of all our episodes on the confessions website and our YouTube Channel. We'll see you next time when we confess again. Till then, take care of you. You.
