Episode 2 Recap
Rachel Austin is an artist, genuinely cool person, and nonprofit founder. She founded the Love Labor Project to connect caregivers – especially young caregivers – so that they can be emotionally supported by people who understand the unique isolation that caregivers experience.
Conversation insights are below.
Learn more at LoveLaborProject.org
Donate to the Love Labor Project
Find the Love Labor Project on Instagram: @lovelaborproject
Find Rachel on Instagram: @therealrachelaustin
Insights
Caregiving is Isolating
The patient and the caregiver has a distinct relationship with individualized experiences. The caregiver’s experience is so distinct that they often feel isolated because neither the patient nor their non-caregiver friends understand what they are going through.
Caregiving Community Needs Support
Most people understand that the United States’ healthcare system isn’t great for a lot of people. What gets lost are the individual family members who have to step up when the healthcare system isn’t able to take care of a person who needs a caregiver.
Rachel founded the Love Labor Project to support those family caregivers.
Support for Caregivers Must Be Culturally Specific
One fascinating nuance to Rachel’s work is that some caregivers can continue to feel isolated in general support groups. Older caregivers don’t necessarily understand that younger caregivers have to give up much of their lives to support a family member. Some caregivers also experience cultural biases in general support groups that are particularly hurtful because attending support groups is an inherently vulnerable exercise.
Transcript:
Jerome: Let’s do it! Hey Brendan!
Brendan: Hey Jerome, how’s it going?
Jerome: Oh my gosh, I’m having the best day. I am very caffeinated and really excited to be here. And despite the name of the show – Bottomless Coffee – I am fully dressed this time. But you never know! How are you?
Brendan: I’m good! And despite the name of the show, I don’t really drink coffee so I’m not caffeinated but I’m also doing equally well because instead of caffeination I just sleep till 11.
Jerome: Okay this is a shorter segway than I was expecting because today we’re going to be talking about self-care and I really think that one of the things that I do to take care of myself and one of the things that gives me joy is sipping on like a nice cup of coffee and knowing that I’m going to have like a productive buzz in the very very very near future.
Brendan: Productive buzz. Now that’s a podcast name.
Jerome: Oh that is a podcast name!
[Laughter]
That is that is our gift to anyone who is listening or watching this right now.
What do you do to take care of yourself Brendan?
Brendan: Well, so a lot of people around me do meditation. Whether mindful or transcendental or just, you know, kind of winging it meditation. And I always felt kind of meditation-shamed that I didn’t and I was also bad at it and also, like, maybe I do need to center myself because we’re trying to balance all the work that we do. That’s, you know, regular work if you have schoolwork to do and you’re studying or if you have work – taking care of yourself that’s work. Social interactions and taking care of other people all like energies we balance right and so I was like, “Well I sure do a lot of that so we should you know center it,”
Jerome: So I don’t meditate but I feel as though if I did not drink as much coffee as I do then I would be in a constant state of meditation. So it baffles me that you who don’t drink coffee are not always like in this centered zen place.
Brendan: No that’s just my brain. It’s automatically on the coffee level all the time and so I actually have to bring it down. And actually, going to the gym is similar to meditation for me. Where you focus on your breathing you kind of push out other thoughts. You get in tune with your body so that’s what I’ve been doing.
Jerome: Are you a cardio or a weights person?
Brendan: I will run if I am being chased by a bear and even then not that far.
Jerome: Okay so you don’t get like the runners high.
Brendan: No, I did not.
Jerome: I do get that runner’s high. If I run for like half an hour then I will get to the runner’s high but then I’m so tired that I’m like okay I’m done.
I know the runner’s high exists and I think that’s just good enough for me.
Brendan: Yeah, no I experienced it like once or twice in eighth grade cross country and figured out it wasn’t for me
Jerome: But do you get like a similar weight lifter’s high or an anaerobic exercise kind of high?
Brendan: Yes I do!
Jerome: Okay!
Brendan: It comes after you expend like lots and lots of energy moving weights. I looked
at my app the other day and said I had moved 65,000 pounds over the hour and a half that I was working out.
Jerome: Hold on, hold on. What app is this? They might want to sponsor. You never know!
Brendan: It’s called fit bod.
Jerome: Of course it is.
Brendan: It generates workouts for you and it shows you how to do the workouts. It’s great. Um,
please give us money.
Yeah but it showed me 65,000 pounds is what I moved with my legs and stuff which is pretty cool!
Jerome: Nice! Well this whole conversation we’re going to be talking about not just self-care but caregiving in general and maybe 30 seconds before we were scheduled to go on you made some notes. You wrote a small novel down here related to the intersection of economics and politics and caregiving and so I’m just gonna like grab this mug and sit back because I’m really interested in this take.
Brendan: Well thank you for the sub read there! It was when I was mentioning the kind of
sectors of our life that we think about where we have to expend energy on. I mentioned like work, studying, social interactions, self-care but something that gets left out a lot is care-giving. So caring for other people. And like 30% of Americans, which is about like 65 million people last year, were involved in caregiving for a family member… which is a stat that I just looked up before this podcast to give some context. But that’s like a lot of people and if you think about it in terms of the amount of work done total in the economy it’s a huge proportion of the economy. That if you’re giving care to a parent or to a child to let other people do other economically productive work but we don’t measure it like that.
Jerome: I agree. I have one quick correction though. You used the phrase sub read but I think
that was a dom read and that I am a dom read person, in general. just so you know.
And I think caregiving in general is something we don’t really think enough about given that we’re all kind of moving to this place where – if we’re lucky – then we will have someone
there who will be a caregiver for us and so I am really really really excited to introduce our guest Rachel Austin who is an expert in caregiving. Rachel is a performer, she’s a caregiver, and she actually founded a non-profit called the love labor project which brings together a community dedicated to caregiving.
Hey Rachel! Thank you for joining us!
Rachel: Hi Jerome! Hi Brendan! I’m so excited to be here – thank you, thank you!
Jerome: Yay! We’re really excited to have you and I was actually very nervous talking about caregiving in front of you you know because I thought, “Oh we’re gonna get corrected if we mess if we mess up,”
Rachel: Yeah, totally. So watch it.
No, I’m just kidding! I was listening very intently to y’all’s conversation there about caregiving and I have so many thoughts and many things I’ve learned from people much smarter than me in my time as a caregiver so we can definitely talk about it. I think Brendan your point about it being at the intersection of economics and politics is very important but also race, culture, all of that plays a part so let’s dig in.
Jerome: Let’s just dig in! I think I absolutely think that we should and you mentioned intersections. I’m very interested in this intersection you have of performance, caregiving, and non-profit life and one thing that you provided to us in your bio is that you received a grant to produce a solo piece related to your caregiving. Can you tell us just a little bit about that piece and how you are inspired to do that.
Rachel: Yeah I definitely can.
Um … so I have been a caregiver for my mom so I’m a family caregiver. That’s generally what the term is for folks who care for a loved one and are generally unpaid. It’s unpaid labor. So I’ve been a caregiver to my mom for the last 17 and a half years at this point and she’s had ovarian cancer since I was 16 and it has been a really wild ride and quite the journey for both of us. First of all you don’t usually see 17-year ovarian cancer survivors who have had active cancer for that long. Some very fortunate women kind of catch it early, beat it, and then they become a multi-decade survivor but they usually don’t have so many recurrences. My mom is not married. I am her only child we’re very very close and it’s just been quite . . . it has had the single biggest impact on my life probably of anything in terms of circumstances that are just sort of thrown at you.
I’m an actor like Jerome said. Jerome and I actually met in an acting class years ago now. And so I was just looking at this Minnesota State Arts Board grant application and I was like, “I think it’s time. I think I need to write a piece about caregiving and I think I need to get a community of caregivers together because I’m so sick and tired of doing this alone,”
Like absolutely tired of going through this alone. And so you know one of my passions is performance and so I wrote this grant to develop a solo performance piece. It felt really right to me that it was solo because this is the most isolating experience of my life and it feels very very lonely so I thought that that was important and I wound up winning the grant which was such a blessing. And I remember reading, being on the treadmill at the YMCA, and seeing the email come through and my throat just like sank into my stomach. And I was like, “Oh my god, now I have to make this thing. Oh my god,”
You know what am I gonna do? Oh I thought I had good ideas but do I really it’s probably gonna be crap. You know . . . all the voices.
Jerome: So there are a couple of things there to unpack . . .
Rachel: Yeah
Jerome: First, you know, just because I follow you on instagram. Your username is @therealrachel austin.
@therealrachelaustin.
You have a lot of photos
Rachel: Yes, the Real Rachel Austin.
Jerome: The Real Rachel Austin. You have a lot of photos of you and your mother and from the photos it looks like she’s thriving and living just like a wonderful wonderful life.
Rachel: Yeah.
Jerome: But then I saw your piece, of course. There were lots of caregivers in the audience and it was so raw and so personal and – was that your first piece that you starred in and produced?
Rachel: No I did a fringe show that was a solo performance back when I was maybe 26. And now I’m 33 so you know that was a very different experience. I was a completely different person but what i’ll say is that I didn’t know what the piece was gonna be. I got that email that I referred to earlier and my mom had another massive situation come up like the following week. So I spent last year at my mom’s side fighting with her to keep her alive and to make the best decisions for her and it was um…
January and February of 2019 were horrific. And so my caregiving journey never stopped.
I kind of thought I would have a break and be able to be making the show but that wasn’t the case. And a lot of trauma came up. Like, I didn’t really know that I had ptsd from all of this but I did so it was extraordinarily complicated in terms of thinking about what I was willing to share, what was okay to share about my mom, how you even articulate some of what I’ve been through. And so I just really worked my ass off. And I was constantly jotting down notes and even beyond that just getting a group of caregivers together.
Like, I had to go out and find these people and to say like, “Is my experience universal or is it unique?”
And I found out that it was universal. I found out that people did want this. I found out we really don’t trust other institutions to support us and so it really became clear that I needed to branch off and start our own thing.
Okay. The show was a big flipping deal in my personal life too. For sure. Just in terms of my growth and whatever but, yeah, you look at my mom you think she’s great. She had surgery last week. She is at the end stage of her cancer which means that we’re only doing palliative care at this point. And she is … yeah it is it’s not looking good for 2021 right now. I think
2021 is about to be … I thought 2019 was the hardest year of my life but I think it might be 2021 actually so yeah. It’s crazy. It’s wild but I’m so glad like her attitude is so good and she does thrive and she’s so positive and she likes to get out there and do stuff and you know I’m lucky I’ve got a phenomenal patient so no complaints.
Jerome: So before we go to break since we are talking about the show, and your mother in particular, did she have any input when you were writing the show was she part of that process?
Rachel: Yes and no. I didn’t give her any information before she walked in on opening night and saw it but we did have to develop timelines together. We sat down and looked at binders of just all of her medical records. We pieced together everything from the number of CT scans that she’s had in the last 17 and a half years – now that’s up to like 49 – to the number of infusions she’s had. The number of all of these different things and and trying to piece together the timeline of what this really was and it was so fascinating. I mean I’m sure you probably remember this from the show Jerome but the movement piece that had the projector in the back and the voiceover that gave that sort of took you through the timeline? There was so much more of that and we cut it out and then trying to figure out, “Well that’s the moment where my grandparents died,” or this is the part where I had to make that decision to move away or not, you know. We were sort of connecting the dots between her medical records and what was happening in our lives at that time and sort of how things came to be. And I think for both of us we would go through it, jot down notes, and then we’d just stop and look at each other and be like holy shit!
That we’ve done that like this is insane! So that’s what that’s where my mom helped me and also obviously I was like, “Hey is it okay if we talk about you and your body and your disease very publicly,” and she was open to it. And you know I’m really grateful to her for that because I think that being open about our story really allows us to help other people in a different way.
Jerome: I think I would say the same. I’m really grateful that she was open to it and that you were able to be so vulnerable on stage because I left the experience with an expanded worldview. Not necessarily thinking – to Brendan’s point – about you know the economics of caregiving but just about all of these people around me. I think Brendon said like 30% of the population have stories that are similar to your stories but don’t necessarily feel comfortable bringing that up over coffee the first time you meet them or what have you. So we have a lot to unpack including how this performance led to you creating the love labor project if that’s indeed how the timeline went but let’s take the quickest of breaks and then we’ll come right back.
Transcript:
Jerome: I’m not sure if Rachel really appreciates how courageous and impressive she is. Most of us don’t talk about caregiving because it touches on a deep vulnerability. You know what, actually touches on is not the phrase. Caregiving is all about the vulnerability that we experience as humans. It’s about needing to be taken care of when we are literally at our most vulnerable and because we often want to be considered healthy, strong, and long-lived we prefer not to talk about it.
Most of us definitely would not create a one-person show about the emotional toll that caregiving takes on us. Instead I’m willing to bet that we’d spend the smallest amount of time caregiving that we could and then we try to shape the rest of our lives to look the way that it would if we didn’t have to be caregivers.
Rachel made a different choice. She wrote and starred in the show then she founded a non-profit to bring caregivers together because as tough as it is being a caregiver – especially a young caregiver – it’s that much harder when you’re doing it alone.
Jerome: Okay we are back with Brendan and Rachel and Rachel is our open book on caregiving.
On our break she was like you got to tell the truth and tell it like it is and so Brendan’s got questions and Rachel is going to give it to us straight.
Brendan: Yeah I’ve got questions. I mean first of all let’s contextualize this. Can you give us a working definition of what caregiving is?
Rachel: Absolutely. So there’s multiple forms of caregiving.
And just one quick note, in the UK for example they call them carers so i’m sure that you’ve been seeing through COVID and things if you follow the royal family and whatnot they talk a lot about carers.
So caregivers and carers. There are obviously professional caregivers, folks who you hire. They come into your home. They are professional caregivers. You also have, you know, healthcare workers. They are considered a type of caregiver. And then you’ve got family caregivers and that’s what I am. Those are people for whom it’s just unpaid labor to the tune of billions of dollars every year. And my working definition of caregiver, in terms of the work that I do with the Love Labor Project, is anyone who has a parent or a loved one with a serious, chronic, and or terminal illness. So whether you’re at their bedside or you’re talking about your mom who lives four states away . . .
A few weeks ago we had a woman Zoom into a support group from Europe, whose mom is actually here. and so it doesn’t matter if you’re the one giving bedside care, if you are dealing with a loved one who is very very ill, i consider you to be a caregiver. I’ve been at the bedside of my mom, I’ve been in college while someone else has been at the bedside of my mom, like I’ve done it all the ways and let me tell you it’s all caregiving.
Brendan: Because there’s lots of work that’s not just being at the bedside right?
Rachel: Exactly. there’s the calling on the phone making sure you’re okay, perking you up. just always thinking about it. it’s the fact that there’s always this person who you’re making decisions around, you know? It’s that feeling of losing your autonomy a little bit and every single decision that I make for my life I think about how it will impact my mom and my mom did not do that when she was my age. She didn’t think about her mom. she was like, “Let me think about what i want,” you know? So it’s a very different experience which is why I’m like – yeah – we’re all categorized together because we are all dealing with a lot of the same emotions.
Brendan: So that kind of leads into my next question. You mentioned that it was an incredibly isolating experience to be doing this caregiving and it seems it would be – inherently – at least a two-person experience, right? Because you are connected with the person that you are giving care to. What about it was so isolating and why, if there are so many Americans and people around the world that are caregivers, why do they not communicate with each other in the way that you felt?
Rachel: Yeah that is a really fantastic question and I’m gonna start answering it and forget the second half of it so remind me about the second half of the question. But do you remember when COVID started this year? I know you’ve got to think back to like decades ago in our bodies but think back to that feeling of you can’t leave your house, you can’t see people, you can’t . . . like when you think about how it felt to you as an average human living in the United States when we went into lockdown. What that did to us and what that did to our psychology and we heard it from everyone. All of a sudden everybody lost control, right? They thought that they had control, you know. So what I would say is that yes, it’s a two-person deal because you’re caring for a patient. But that doesn’t mean that the patient is entertaining me and it doesn’t mean that anybody – that’s kind of a funny thought to me – but it’s like it doesn’t mean that that we’re hanging out. It doesn’t mean that she is thinking about me and my needs because in that moment it’s all about what she needs so I’m not even thinking about myself. I’m thinking about her. So even though you’re there with a person a lot of the time they’re heavily medicated. They need you. You’re literally trying to figure out how to plan out: okay so they have to eat before they take these pills, well that means that I need to get into the kitchen and start making that at this time, did I write down what time they took their pills, have I called the doctor, have I done this right? So then think about that being like basically the foundation of your life for that moment or for a long moment and then think about what that means for your social life or your dating life or your school life or your work life. All of a sudden your life becomes so small it becomes a little pinpoint in like a sea of different . . .
I feel like everybody else’s life sometimes when I’m caregiving is so bright and vibrant and I am just like sitting underneath the rainbow in a teeny tiny little corner over here dealing with what I’m dealing with. And it’s really difficult without peer support, especially when you’re young. Which is why I care so much about the millennial generation really getting into this and talking about it. It’s that our peers don’t know how to show up for us in that moment. I mean, should they know how? No, they shouldn’t know how. Which is why we’re talking about it, because nobody who is 16 years old should be dealing with some of the stuff that I was dealing with. but that’s life. That’s reality. So the bad things are gonna happen. People will kind of maybe rush to help you right at the beginning but what you really need is that base. I need caregivers to meet with and now I have that with a central group of girlfriends who – just to give you an example – even from different parts of the country will doordash me food, will make sure that I’m eating. We’ll call and have a Zoom, we’ll just say, “Hey i know you’re busy, I’m just checking in,” you know? There’s so many things that folks can do.
Jerome: So let me just reflect back and make sure that I’m on the same page with you and I think that I am but we’ll see. You’ll tell me if I’m not. Regarding this question about why caregiving is an isolating experience – I think i was hearing that the experience of being cared for and the experience of being a caregiver are so distinct that the person being cared for maybe doesn’t even realize what the experience of the caregiver is and so you can’t share things in that way.
And so, in kind of a response to that need for support, you created the Love Labor Project and I’d love to hear more about it because apparently they will doordash you things. Which is probably not, you know, the heart of it but I’m hungry so..
Tell us about the Love Labor Project please.
Rachel: And right before I jump into the Love Labor Project I do just want to say that there’s a really interesting dynamic that occurs between the patient and the caregiver. For instance, let’s talk about me and my mom. That’s my person, you know? She is dying. What do I want to make the moments about when I’m with her? What do we want to talk about? How much of my burden do I want her to carry, you know? These patients are working very hard to get well or to be okay or to have a more typical life. They’re working hard and they’re focused on that. Should they necessarily be focused on the caregiver? No, I don’t necessarily think so. I think an awareness is really important but a focus? Certainly not. So for me it’s more about it . . .
There’s just a weird tension in a weird dynamic. My mom and I are very open with each other about emotional stuff but it’s a lot. Like, sometimes I don’t want to go to her and be like, “You’re dying and I’m really upset about it,” because I don’t want her to think about the fact that she’s dying. you know what I mean? So you get there’s a weird push and pull of emotions as well you know? And when it’s your parents, when it’s your spouse, somebody who you rely on for that
emotional support and all of a sudden you don’t have that from them too? I mean the grief and the isolation is real
And so that is a perfect segway actually into Love Labor Project because that’s really what we’re there for. It’s the emotional peace and the support of the caregiver. So love labor project is a nonprofit that provides support to young adults who are 20 years old to 40 years old and there’s a little wiggle room on either side and right now. it’s for those who have a parent with a serious chronic and or terminal illness and the way that we offer support . . . we did a lot of value mapping together when I convened the group. I have a background in community engagement, so, for me, I wanted to create a basis for our model because that’s what we need. We need to decide what we need to take care of ourselves and how we want that support system to look. So we did a lot of value mapping and it was so surprising and unsurprising to me that the three things that I wanted were support groups that were specific to young adults. I don’t want to listen to a 65 year old person who’s caring for their husband tell me that well why is it a big deal when your parents are supposed to die before you. Like no, you don’t get it you don’t get that I’m building my life. You don’t get that I’m giving up careers. you don’t get that I’m like, hello i don’t have a husband you know.
Jerome: Do people really say that?
Rachel: Oh people say the wildest things to you. So I wanted a support group that was just for us. I wanted a community of young adult caregivers. A social network. And I wanted educational opportunities and damn it if every young caregiver that i talked to didn’t ask for the exact same three things.
Brendan: So when you looked around and you were like you knew you needed these things and other people also knew they needed these things and you looked around and was there just nothing? Is it piecemeal? What made you be like, “I need to create this thing?”
Rachel: Yeah, there are some things that are starting to form around family caregivers and family caregiving and there are some incredible organizations working towards policy. But they’re working towards policy around a deep seated inequity and white supremacy in this nation because those structural inequities run deep. Think about how we think about people who help, you know?
It’s not great.
Particularly caregivers and domestic workers. So there are a lot of organizations that kind of work towards that. There’s the AARP who does care about caregiving and then there are some little non-profits here and there who are more generalized caregiver support. And I was really on the millennial train and that’s that’s sort of where I’m at because, like I mentioned before, I just really don’t want to hear it anymore. And I think a lot of other people didn’t really want to hear it either and we’re focused on very different things. And it’s funny because I’ll get people that hit us up on instagram and be like hey we’d love to do a collaboration. I’ll get an email or something and they want to offer me a product to use with the patient, to use with my loved one because they think that that will help ease the burden of the caregiver. And while I appreciate some of that tactical functional support I’m not interested. I’m interested in focusing only on the caregiver and the caregiver experience and really their mental health and their self-care and that doesn’t involve talking about what we can do for the patient.
Jerome: Okay I really want to ask this question so i’ll ask this question and then we’ll take another quick break. Can you tell me like . . . I heard you mentioned zoom before so it sounds like these are zoom meetings right now but . . . what is a meeting like?
Rachel: For the group meetings? Yeah, absolutely.
Oh and I know that Brendan loves stats so I do want to say that 25% of family caregivers right now are millennials and that number is growing and it will be growing rapidly, particularly with the healthcare system and its implications and the economics in this country. A lot of people can’t afford to hire people to help them and also, culturally, that is not always what families want to decide to do and that’s perfectly awesome
So anyway what does a meeting look like? Right now yeah they’re over zoom. We were a Minnesota, Twin Cities based organization and so we were meeting like the first or second Saturday of the month at Sovereign grounds down in South Minneapolis. And it was lovely but with COVID and Zoom it’s just been a real blessing to be able to expand out to national and international friends as a community. So it usually looks like we log on, it is a very informal conversation, it’s a little bit of a mix of a support group and a hangout. We have talked about everything from if you want to share about a scan that your parent had this week or a fall that they had this week or whatever. Like absolutely we share that. We also talk about dating. We talk about work-life balance. We talk about how frustrated we are with fill in the blank. Whether it’s a friend who really doesn’t understand and is pushing us to do stuff and we really can’t because it’s COVID and we’ve got a sick parent at home that we’re taking care of you know . . . all of these different things. But the thing is, is that everything is within the context of caregiving. Because I feel like when you talk about dating with your friends who aren’t caregivers, it’s a very different experience for them and for us it’s something that it’s like . . . when do you tell somebody on a date that you’re caring for your mom? when do you bring up that you’ve got this sick parent that might have to live with you? When do you bring up that she’s dying or like I mean what do you do? And then yeah, it’s very very complicated and when you add on the fact that . . . like so for me I would really like to get married and have a family and I always thought that my mom was going to be around for that. And guess what, she is not. So you know it’s a different thing for me to talk about my dreams for the future because my mom won’t be there. It’s a wild ride.
Jerome: So it sounds like this is a space where you can have some emotional intimacy with people who are having a shared experience?
Rachel: Yes it is.
And let me tell you what if you’re looking for a best friend, find you a caregiver because they are just the best beings. Like these folks are just incredible. I mean I cannot say enough good things about these people. They’re wonderful. So do you have a kind of a friendship with some of these people outside of the meetings? Yes, absolutely. We’ve got folks from everywhere. From Washington State to Atlanta to Pennsylvania to Alabama to Texas to Minnesota like and then, like I said, we had Europe a few weeks ago. Actually there’s some of us that are all a part of sort of the movement of building organizations and businesses that support young adult caregivers and so we have our own collaborations behind the scenes and we really try to help each other with our business plans and with our just talking through what that looks like. So there’s a support network of founders behind the scenes then there’s like this whole community that they’re a part of that’s like the millennial caregiver community that’s hanging out. And then yeah we’re friends. We’re there I mean. We had a member whose parent passed away and folks went to the service. I mean this was before COVID but yeah like we show up for each other it’s really really great.
Did I answer that question
Jerome: You did! You answered both questions it was my bad, I was only supposed to ask you the one before we took a break so we’ll be right back.
Jerome: We’ll talk a lot about policies in this podcast. Either about what policies are doing for us or what they’re not doing for us. What the law is or what the law should be. In our conversation with Rachel we talked about how caregiving isn’t really valued in our society and so it isn’t considered in our economy. For the most part you don’t get paid for taking care of your sick family or friends or, if you do, there are some very clear strings attached. But like we talked about at the top of the episode, literally everyone requires a caregiver at least once in their life if not twice so why don’t we have: sick leave that kicks in when your best friend is sick, maternal or paternal leave that lasts until your child is independent – or at the very minimum public child care, time off to care for someone who is depressed or having a mental health crisis . . . and the list could go on.
We’ll get back to the conversation but I want to invite you to really think about how the way that our society views caregiving impacts you personally. And this goes doubly true if you are a
manager or a business owner. Think about the caregiving policies that you have in your company and also think about the way that your company describes how much it cares for its employees. Do those statements and those policies align?
Jerome: We are back with Bottomless Coffee with Rachel Austin – @therealrachelaustin on instagram – and we’re having an amazing conversation. I’m so grateful for you to being and one thing I think that a lot of people listening or watching are going to be itching for is how we as people who don’t identify as caregivers can support the caregivers that we may in in our lives in some way. And – ideally without offending, right? Because I know sometimes asking those basic questions can lead to responses you don’t want to give or you don’t want to talk about. So what can we do?
Rachel: Absolutely that’s such a great question. One of the things that I really care a lot about is how we show up for each other and I think that that goes far beyond the caregiving sphere of things and is just a more generalized issue worth talking about. So I would say that the two biggest things is just remembering that when you ask someone who’s caring for a loved one how their parent is or how their loved one is or whatever . . . and you sort of want a response about the bad thing going on or about the illness or about whatever . . . it takes very little for you to ask that question and it takes a hell of a lot for me to answer. This is something that I’m going through in my life that’s very tender. People care and they want to ask and I do the same thing so it’s not that it’s inherently bad to ask like how somebody’s doing or whatever but just be mindful of how and when you bring that up.
You know I’ve been at a party before when someone asked how my mom was and I was
really just trying to like escape and dance and be drunk and then you know I had to sit down for 10 minutes with this person and make them feel better. Because that’s what it winds up being. It’s not usually about the asker wanting to make sure that you’re okay, sadly it becomes this thing of like oh I need to take care of this. I need to make this information palatable to this person.
Jerome: Okay so Rachel I just wanna circle back around a little bit. You as a caregiver who’s already kind of feeling isolated from the millennial experience are going to a party ideally to connect with that millennial experience. To just like, get drunk, dance, or what have you and so someone thinking they’re doing the right thing by asking you about your caregiving is like really taking you out of the experience that you want to be in.
Rachel: Yeah, like, just pick your moment because it’s not that I resent you caring because that’s just awful and I certainly don’t feel that way. I think people are incredibly kind and generous and there are so many people who’ve asked after me and after my mom over the last 17 years that I just I’m so grateful. It’s just sort of being aware that for us it’s not an Instagram story or a Facebook moment or whatever, it’s real and it’s hard and it’s painful and there are just times when it’s better to ask in times when it isn’t.
So just being mindful. And then the other piece of that in terms of what people can do is . . . I really want to get after this phrase, “Let me know if you need anything, okay?”
Let me know if you need anything. We all say it. It makes a lot of sense. But let me tell you what it feels like on the other side sometimes is like: I don’t know what I need or you don’t really want to help me. It starts to feel performative after a while. It isn’t real. And when I’m caring for my mom I’m not thinking about myself I’m not thinking about what I need you know I’m very much in the zone and so for . . .
So I’m from Texas. I feel like that’s really important to mention. And where I’m from people just show up. They show up with casseroles, they show up with pies, they show up with whatever the hell. They show up with helping hands. They show up with whatever and so for I really love it when my friends are like, “Hey, I wanna I wanna get you dinner once this week so just let me know which night you’re gonna be home and i’ll bring something over,” or, “Hey would it be cool if I took care of your grocery shopping this week for you?” Because maybe you don’t have time or it’s just it’s really random . . . and yes it’s it’s mostly about those people that are really in your
close circle – I think it gets harder like the more you go out and the more the further out the rings go it does get more complicated – and they’ll let me know if you need anything seem to fit with certain relationships but I just think that let me know if you need anything phrase is a little bit empty and I would challenge us all to do a little better with that.
Jerome: At the same time people, who you’ve met like once at a party three weeks ago don’t need to really be asking you these personal questions anyway.
Rachel: Right? And they do they do because they know it’s my work they see it on Instagram – and follow the @lovelaborproject instagram because that’s where that’s where we really get into it but people who know that it’s me pulling the strings behind or whatever you know they want to talk about it. And so there’s a lot of days where I feel like I have cancer daughter written across my forehead and to be perfectly honest with y’all I hate that. I’ve been doing this for so long that I would like to just be myself. I want to live my own life. I want to have my own thing going on. Like I wish I had that kind of freedom so yeah some of it’s about a little bit of resentment around that for me too.
Jerome: I’m sure.
Rachel: But it is also something that I hear across the board for sure.
Brendan: So shifting gears a little bit, I just wanted to ask you . . . through this experience of creating this support network, through the Love Labor Project – what is something that you’ve learned from creating that community that you didn’t know before you founded the nonprofit?
Rachel: I think I really didn’t know how universal it was. I didn’t know how universal the things that I felt were and how desperately people were seeking that. And then I think that through the
show and the responses to the show from non-caregivers, I think I also have started to put
together a sense of understanding around ideas of millennial resilience. Because I think that that’s very ubiquitous in what I’m talking about. That’s a big part of what we deal with.
Brendan: Is it something specific to the millennial generation?
Rachel: I think so, absolutely. I think every generation has a different vibe I think that when people talk about millennials – you know we’ve seen it this year with COVID – there’s this laundry list that people can come up with on the internet and memes of how millennials have now been through with this of this or this or this or that. And so millenials don’t have – for example – the lockdown drills in schools like kids today have. We had a different thing that has traumatized us as a generation, you know what I mean? Several different things.
Jerome: Multiple financial collapses, pandemics . . .
Rachel: Exactly, so when you’re looking at millennials and you’re saying things feel tenuous they look at you and they’re like “Don’t I know it!”
Where older generations are like, “Well why is it tenuous for you? Just pull yourself up by your bootstraps, get an education, get a job,” and it’s like ,”Oh no. I graduated in ’09, don’t play with me. I think I was in the recession class.
Jerome: I think that’s one of the wonderful things about the Love Labor Project is that you’re organizing a community right? And so you’re there for each other and you know personally, as a politician, I have to ask a policy related question.
Brendan: It’s actually in the contract for Bottomless Coffee that we have to do a policy question.
Jerome: Obligatory. Rachel, if you had a magic wand for whatever what policy proposal would you immediately enact . . .
Rachel: That would be paid leave for family caregivers.
Jerome: Without missing a beat! Okay, that would be it?
Rachel: Yeah, I think that the biggest burden for family caregivers in terms of what policy could do – beyond universal health care and taking care of the citizens of this country – is also some kind of paid family medical leave. Whether it’s through a disability program through long-term disability or whatever that could be through the government. I mean, we already talked about the fact that our generation isn’t going to have social security.
Well what if social security money was going to fund young adult caregivers who were actually having to not work because they needed to take care of somebody? And the government wouldn’t want to put the bill of how much it would cost to care for that person either may I just say. It is so wildly expensive. Yeah, so that’s what I would say.
Jerome: So distinct from the Love Labor Project, what can someone watching or listening to to support you Rachel?
Rachel: Uh, to support me or to support caregivers?
Jerome: Well I would say to support you, a wonderful human who has created this community and has shared so much of herself with the world.
Brendan: Typical caregiver response to think of someone else.
Rachel: Well you know I would love it if everybody would please just take a second think of people in your life who are your age who are millennials or young adults who are going through something really hard and maybe have a loved one who is sick whether they live with them or not and just reach out to them.
I think that the biggest favor that you could do for me is to reach out to them to let them know that Love Labor Project exists, that we’re there for them no matter where they live, and that they can attend anything with us for free. We provide all of our program programming at zero cost to caregivers.
Also, I am out there. I am a real person. I can do one-on-one conversations. Just please hit me up. And then I think my next favor would just be to say next time you want to say, “Let me know if you need anything,” maybe suggest an option instead. And in terms of of a favor to me, like we are still we’re a baby non-profit. We’re growing, we’re excited, and we’ve got amazing programming coming up. We have an educational workshop series with a friend of mine Bahamia Ulysses who’s @NurseInTheKnow on Instagram and we’re going to be talking about
designing your caregiver experience and navigating difficult family dynamics and things like that. So that’s coming up in december so please just spread the word. We want all the millennial caregivers to have a home even if they’re only caregiving for a few months out of their life or whatever. You’re welcome. Please just come and find us we’re here for you and we’re really cool and nice
Jerome: You are really cool and nice! So follow @LoveLaborProject on Instagram and then for actual human conversation follow and dm – nice dms only – @TheRealRachelAustin on Instagram, cool?
Rachel: Thank you guys so much thanks for giving us an opportunity to bring some more visibility to millennial caregivers because here’s the deal, it’s coming for all of us the way that the economy is going and the way that healthcare looks in this country right now.
Every millennial walking is going to have to be a caregiver at some point or another so let’s just be sure that we build up the best infrastructure for that that we can.
Jerome: Well we’re doing this to let people like you up – so yeah, gratitude received!
Rachel: Thank you so much you guys!
Jerome: Thank you Rachel
Rachel: Bye Brendan!
Brendan: Bye!
Jerome: So do you remember at the end of Episode One when I asked Alex how we could support them and they responded by listing off all of these other organizations that could be supported?
Well now that I have asked Rachel that same question I’m sensing a trend. Both Alex and Rachel deserve to be rewarded for their work in their individual capacity so – if you haven’t already – please go to Patreon.com/BottomlessCoffee and become a Community Member. I will draw from the funds that are pledged to help support Alex and Rachel in their work.
Thank you so much for joining into the conversation today! In the next video we’ll be talking with Ehren Minkema about political ideology. Ehren used to be a staunch republican and now he is a proud progressive. We’ll be talking about what led Ehren down that particular journey and how we might be able to get our friends and family nudged down a similar path. See you there.