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Culinary Care Part One

Charlotte Bayala: Meals can cause caregivers a lot of stress depending on how intense their caregiving role is. Or if you're like me, it can be stressful at any time. Figuring out what to make or where to get the next meal for you and the person you care for can be extremely difficult, especially if you don't have the energy to problem-solve.

Most importantly, eating a meal with someone creates connections and gives you a chance to enjoy the person you're with, even if it's a quick bite to eat. In between a long day of doctor's visits and testing, Courtney Johnson realized supporting caregivers for meals on these days was an important unmet need.

Listen to the first part of my conversation with Courtney and learn about her organization culinary Care and how she hopes to support you one meal at a time.

Courtney, thank you for joining me today. I'm really looking forward to learning about your organization, culinary Care, and the support you give families Living with Cancer. Can we start with your personal story and how it led to you creating culinary care?

Courtney Johnson: Yeah, thank you so much, Charlotte, for having me on and having this conversation with me.

So I guess my story really starts in 2006. My family and I were Preparing for our spring break trip, and I was a junior in high school at the time. Mm-hmm. And we, my dad had been displaying some sort of like weird symptoms, like having trouble walking, calling things the wrong name, and we just weren't really sure what was going on.

And so instead of spring break, we were actually ended up, Going to the hospital with him and just rushing him into the ER to find out like what was going on. Wow. And after spending the whole day there, he was diagnosed with stage four lung cancer. And so everything, I mean, once you hear that, everything kind of moves very quickly, but you don't actually even have like a lot of time to like, Process what's going on and what's gonna happen, and just kind of everything is racing through your mind.

And so you know, my family and I have two younger siblings, and so it was kind of, my mom and I are now becoming caregivers and going, I'm the only driver. So it's like I'm making sure everyone's getting places and you know, it, it was just a lot of time. In and out of the hospital you know, going through that.

And he was given five months to five years to live and ended up passing away Wow. About seven months later. So I was heading into my senior year of high school at the time. So it was just a really sort of really just crazy few seven months yeah. That, that we went through with that. So that was a little bit about, you know, where, where Culinary Cares story really started was just having that.

Going through that and having that experience. And then during those seven months, we had friends and neighbors that brought us food daily. Okay. You know, we had. Food at our doorstep or people that just made sure that we had it while he was, we were visiting him in treatment. We were spending so much time at the hospital.

Yeah. And you know, I come from a house, like everything that I remember about my dad and just everything about like my family and just where our moments of connection really were, was around food. And my dad really lived his life not really as kind of a an eat to. Survive guy. He was like, Uhhuh, I'm eating to live.

Like this is my moment to relax and have an experience and really just like sit and connect with my family. And so the idea that we might not have been able to have that if our family and friends hadn't stepped in was just you know, something that, that I continued to think about and had continued to stick with me through college.

Yeah,

Charlotte Bayala: that was, and thankfully you. You had all of those people to help you out, because I know that when you are in the midst of all of that stress and, and like you said, everything happening so quickly we, we start to go into that eat to survive, right? Because we just pick something up and we eat something just because we have to or because, you know, we haven't eaten in a day and a half because there's so much going on and.

I find that a lot of times it's the hardest thing to even identify as an issue when you're in the thick of it, but it's the best thing. I mean, I have cried over meals just sitting at my doorstep like, oh my, like, yeah. Without even knowing who it was from. Just the fact that there is someone took the time to make something and that, and it was homemade and I didn't have to order it or go buy it, already made, it just made everything feel better.

So I think there's a lot of people that can identify with that experience too. Yeah, I think it really

Courtney Johnson: is. You know exactly what you say, where it's. It's really the last thing on your mind, which it was like so surprising for my family and I, and just watching us go through it cuz like, yeah, everything we did was centered around food and now it's literally the last thing that we're thinking about.

Right. And it would've been really challenging to, and you're trying to keep up with. Like some semblance of normal life. And so for me and two siblings, like we still have extracurriculars like my mom still, like you still have to go to school. Like you're just trying to fit like cancer and these treatments and all of the things into like you are already really busy lives.

Yeah. And so I just find that food tends to be like the one thing that. Is in our control. And then as a result is like the thing that gets put down the to-do list, and it's just the last thing. Mm-hmm. You know, that you, that you have the bandwidth to think about and it is so easy to go through.

Through the day and just say, oh, I'm not hungry, or, oh, I don't have time to do that, or I've gotta get to this first, or that. I think we all go through it just with our own, you know, days where you, you are working so hard and you're like, oh my gosh, I haven't eaten lunch. So it's really hard to just like remember to always have those, those moments and of actually just eating.

Charlotte Bayala: Yeah. Or, or you feel like you, you're able to hold everything together. In trying to have cancer in the family and still do all of the other things like school and extracurriculars, and there's that moment where, The person who makes the meal goes to the kitchen and has to decide what to actually make, and that is the one thing that just brings you to your knees.

You're like, I, I kept the whole day together this whole week, but it's this one meal that broke me. And I think it's just we identify with the comfort that we get through that food. We just don't notice it as much when we are so distracted and, and trying to just keep everything together. And, and trying to bring back that feeling, that sitting around a table and eating with all of our loved ones and having that experience, there's so much emotion attached to that.

Courtney Johnson: Yeah, there is, there's definitely, I think, so much emotion that. That goes into a meal and it's so hard to describe mm-hmm. Even all of the emotions of, of what that is. And even just in a, a recent conversation that I had with one of our patients you know, she was articulating that she was in just a really dark place and feeling depressed and had no community support stepping in and helping her.

And she was really just on the verge of like, Why am I even fighting for this? Like, why am I, why am I working so hard for this? And we saw her in tears in the hospital and my colleague brought her a meal, and from that moment forward, you know, we were calling and checking in and she communicated it as like, I am standing here today because of you, because you lifted me out of that dark place and there is just so much emotion that is packed into to one plate of food.

So yeah, I completely agree with that.

Charlotte Bayala: That's wonderful that she had you all to give her that moment to tell her that through a meal. She, yeah. Keep going. You know, and it's hard to think and function and be able to problem solve if. You're not fed. And so that I think is a, is another component to feeling.

Feeling like you've, you've been feeding yourself, but in a way that brings you this warmth and this sense of love that doesn't necessarily come to the top of our priorities when we're trying to. Go through chemo or take care of a loved one who has cancer. That, and, and that's a, a huge part of our days that is lost because there's just, it's not as easy as people who don't experience this feel it should be right.

Anyone who hasn't been in this world of cancer could say, well, it's just a meal. But just a meal is important, especially when there's so much happening in your life. And, and so how did that, that knowing that meals were important to your family translate into culinary care?

Courtney Johnson: Yeah. So I had gone to college you know, just again, had to kind of like, keep moving forward.

Yeah. Even after my dad passed. And so it was, you know, just onto college. I, you know, spent. Four years at the University of Arizona and then when I came back and I'm from Chicago and so when I came back to Chicago was, you know, getting my feet on the ground with my job and really just wanted to get involved in the community in some way.

And I've always volunteered with different organizations and so that was just something that I knew that I wanted to, to keep doing. And I went to a lot of different orientations trying to really kind of figure out like where, what. What do I wanna do and what do I feel like is gonna be meaningful to me?

And just based off of my experiences and, and how do I really wanna give back and sort of change people's lives? And for me, food was just the thing that kept coming to mind and I searched for organizations I could volunteer with. Mm-hmm. And was really surprised to that. I was not able to find anything that was able to connect me.

With a family or an individual that was going through something that my family had gone through. And it was just where I could step in and say, Hey, I'm here with a meal, and do the exact same thing that my community did for us. And you know, then once I saw that there was really nowhere I could volunteer, I just had all of these questions and you know what happens?

If your neighbor is struggling to feed themselves and like, isn't able to bring you a meal while you're going through this, or, you know, for me, my dad was going through treatment for just seven months where I know people are going through this for so much longer. And so what happens, you know, does the community support sort of dissipate or they, you know, really able to, to have this kind of lifeline and, and just sort of all of these questions of what does that look like?

And so you know, that was kind of really what started culinary care was just thinking through. How meaningful it was, not only to have the meals, but exactly what you said, to know that people cared enough to help my family and step in in that way. And so that was really where the name came from, was like, what were the two things that like meant the most to me was the culinary side and the care.

And then it was really just kind of, Taking that meaning and saying like, I'm just gonna start doing something. Yeah. Like, we're not gonna overthink this. We're just gonna find, I was working full-time. I had a lunch break that I could take, and so I wasn't able to cook and prepare meals. I was, it was during my workday, but I was able to actually go get a meal from a restaurant.

And so we had restaurant partners that were willing to, to donate meals to our. Our organization and we were able to take those meals and I would literally leave work on my lunch break and go deliver it to, to somebody that was, was in need of food. And that was kind of like, as far as we got in the, in the initial planning mm-hmm.

Was like, we'll just, we'll get meals from here and we'll get it to someone over there. And I remember the first person we ever delivered a meal to, she ended up writing me this. Four page letter about how much it meant to her and how cooking for one person reminded her of how lonely she was because everything you guys in bulk or is in meant for a family of four.

And as a result, she was just not eating. She was like, I would rather just skip a meal. And Okay. You know, she didn't have the strength to actually like, Go to the stove top and prep anything because of all the different, you know, surgeries and treatments. Her arms just like couldn't go you know, above to get to the cabinets and just all these things that she expressed in this letter.

And then at the very end of it, she was saying how culinary care to her. Restored her faith and human kindness and just all of the, the generosity and support that she received from one meal. Like at that time it was just, here is one meal for you. Yeah. And so that was a really sort of, I think, game changing and really just like motivational and lightning moment of like, wow, like this is how we can change lives through food.

And if we can do this for one person, like how many more can we do this for? How can we impact their lives in this same way? And, and let's keep going and growing. So, For two and a half years. It was me, my colleagues, my family, just taking time on our lunch break and, and delivering meals. And we were at the Ronald McDonald House as well for about like 25 months.

We did that. And then Okay. We heard from one of our patients that where the most meaningful way we could serve her, she was going to treatment with her son. And her son had had treatment and so she wasn't really able to prep lunches and she found them just sitting there going hungry for like the whole day.

Yeah. And she was like, can you deliver the meal? To my treatment, to like, to our treatment center. Mm-hmm. And so that sort of really inspired what our, what our main program is in the initiative is right now is our, our program is we deliver meals from local restaurants. Mm-hmm. And we bring them to outpatient cancer centers.

Cuz we were a, we were able to deliver, So many more meals during that lunch break, and it just became such a meaningful place for us to, to connect with people and also just like have this special treat, like to feel treated and get you to treatment. Nobody wants to go to the doctor's office, like no one wants to be sitting at the hospital.

And we hear from our families that. They not only are like going to treatment, but they're like, I am excited. I'm like, ready to go to chemo. Which is pretty, which is pretty incredible, the fact that we can change the whole mindset and perspective around it and build this like enthusiasm. So yeah, that was really just like a little of the backstory of how we got started was really just thinking through.

What did it mean to me? How are we gonna get, you know, meals to these families and, and continue to just find ways to make a meaningful difference in their life? And so, mm-hmm. Now our programs have expanded, you know, we have our treatment day meal program, and so you can get this, these free freshly prepared restaurant made meals delivered to you during lunchtime.

So if you're there for those really long infusion days mm-hmm. Families have access to that from. The moment you start receiving a meal on your treatment day, we also have like our care coordinators, like patient navigators that are there with you. They check in with you and as we were talking about, it's so hard to even think and remember to to eat or to get food.

So their whole, yeah. You know, one of the big focuses of their job is to call in. Check on you, just see how you're doing, but then also remind you if you have a treatment coming up, would you like to order anything? We can do all of our ordering over the phone. But we also have our own app that people can use just so if they want to do it on their own time they can, they can log in and just order a meal whenever is convenient for them.

Okay. And then, We have our holiday meal program. So we started expanding through the generosity of our restaurant partners that started offering Thanksgiving meals. And then we've expanded into, you know, Christmas as well. So we do Thanksgiving and Christmas. So it's really just our, our goal is to continue to, to find ways to nourish as many recoveries as we can.

Mm-hmm. Which is, you know, our ultimate mission and end goal is to make sure that families are. As supported. You know, for us, nourishment means both the culinary side, but then the care, which is like the hope and the comfort and the community that comes with every meal and through, through our team and all of our supporters, you know?

Charlotte Bayala: Right. Cuz this is more than just calling a restaurant, ordering food and somehow getting it delivered to you. This is a group of people. Who know that you are in treatment or will be going into treatment. They have the foresight to check in with you at a time. You know, right before you do anything that has to take you to the hospital, there's a certain level of anxiety and stress.

And so you have that, at least that conversation with someone outside of your family, outside of your circle that are there to call simply just to support you. And to also check in to make sure if you need a meal that it's ordered. And then to have that I'm, I mean, knowing that there's something good coming up in the middle of the day that can be so tiring and stressful and anticipating that moment when your meal comes.

Has to be at at least a little bit of a, kind of shining the light and, and a little bit of darkness that is there. Just knowing, you know, waking up and feeling that dread in the beginning, but then thinking, oh, but wait, I do have my meal coming. At least there's, there's that, but it, it's more than just having food delivered.

It's having. A group of people just saying, you got this, like the, we're gonna support you this way, but we, we just want you to know that there are people that are rallying behind you and we just want to make sure that you're fed. And to have that has to be extremely nourishing in its own way because this doesn't, people would think that.

You get special treats or you get to order, you know, service from the hospital, but that isn't necessarily the case. Like, you go, you have your treatment, you take whatever you need, you know, there isn't someone taking lunch orders while you're sitting and, and getting your treatment while you're there.

And yeah, it's a lot of people understand that. That those meals, that lunch especially, is so important because the person sitting with the one having treatment doesn't necessarily have the energy to get up and go seek out food, come back. To not have to worry about that is. Is so great for the caregivers and the people who are in there for treatment because you're eliminating one thing that they have to problem solve and think through at a time when they're really at capacity for any, any thought process altogether.

Courtney Johnson: Yeah, I think you brought up a great point that a lot of people are unaware of, and I didn't know it when this family had asked us to come to their, their treatment center, was that most hospitals do not provide any meal services for outpatient care. Even though patients are there, typically it's, it's anywhere from, I think the longest we've heard is a 12 hour day of just doctor support.

Appointments and getting treatment and then seeing a psychologist and then having to go to this person. So it's just these back to back appointments and blood draws. And so you're there for these really long timeframes. Mm-hmm. And nobody has given you a heads up. You do not get any meals during this time.

Like that is just not something that is provided, which was surprising to me. And then just the number of patients that call in, they've gone through their, you know, they went to their very first treatment and learned it in that moment is just always something that we're continually working to make sure that they're aware our program exists and that, you know, I think should.

Our, our mission and goal right now is really to make sure that, that's just something that as many hospitals as possible can offer, is being able to say, you know, we know you're coming in for this long day, and if you would like lunch, here's a really simple and easy way to get it. Yes. And that way you just don't have to worry about.

You know, prepping everything for the day and there's so much on your mind. There was a patient, Patterson, who I met when I was delivering meals, and he just describes it as this roller coaster of a day. And it starts, you know, days before of worrying is this the time my doctor is gonna tell me I'm getting good news, or am I getting bad news, or what is the news going to be?

And he said that when he started receiving culinary care, it was, Instead of thinking about any of that, it was thinking about, well, what's my meal gonna be? And just changing the whole mindset. He was like, it just, it made me feel present in the world and just like I had, you know, some normalcy and wasn't rushing around and trying to figure all of this out.

And for us, providing meals for the family and caregivers, anyone that's with you on this day, it could be a friend. Anyone that's there with you, you know, we want you to eat alongside them. Like a meal is a social ex experience and activity. And you know, we just didn't feel like it was right to say, oh, well, we're just gonna provide it to the patient.

But just making sure that it's a really sort of, it's an experience for everyone to be able to enjoy together.

Charlotte Bayala: Thank you for listening to the first part of my conversation with Courtney. Next week we'll talk about how culinary care works, what you can expect, and why. This might be the bright light you need on a heavy day. You can find more information about culinary [email protected]. Thanks for listening.