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Culinary Care Part Two

Charlotte Bayala: You find yourself in the hospital with your loved one, tired and hungry. You've been up since 5:00 AM didn't have the stomach for breakfast, and now you have only 45 minutes to find something for lunch before the next appointment. Of course, so do all the other thousands of people in the hospital and you dread having to stand in line, find a quiet place to sit, and then rush off to your loved one's next appointment.

You always say you're going to bring lunch, but the stress of the days leading up to these appointments are usually overwhelming and you never get around to doing it. Wouldn't it be nice to have already scheduled an ordered a meal to be delivered to you on these days? That's what Courtney Johnson's organization culinary Care does.

In this episode, we talk about how to set yourself up for the meal service and the support you can expect to have. Let's listen to the second part of my conversation with Courtney.

Courtney Johnson: 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. So,

Charlotte Bayala: yeah. And, and those meals, I mean, we have. I've had with my husband decade now of these hospital visits and, you know, sometimes people drive a long distance just to get to that long day and then have to drive back.

One time we lived two hours away from the major hospital facility that he would have his, you know, six month scans and doctor's visits and thankfully, They were able to fit everything into one day, but that means you are there for, like you said, close to 12 hours. And the one thing that would just you, you don't always have time to go get a meal.

At the time that you have this like little break because maybe you would, in a perfect world, have have the ability to run, go pick something up and come back. But that would be if there weren't lines of other people at these restaurants because they're the only things that are close by to the hospital or in the hospital.

I mean, there were days where we would, we at least had the time, but we would walk up to a place that we thought we were gonna go pick food up from. And the line was long. And so we just went down our list until finally we got to a place where we had time to order because we were just too exhausted to, to function enough and just wait in line for something.

So to know that. It, it takes away that it takes away the energy that it, that it requires for you to simply walk to get something to have to go through. So it's not just like, oh, well I don't have the bandwidth to figure out what I want to eat. It's not only do I not have that, I don't have the energy, I don't, I don't know when I can fit it in.

So there's a lot of other Things that are coming into a day at the hospital that really make it difficult for a person who has multiple things that they have to go throughout the day to actually eat. And we have had days where maybe it was, we had enough time for coffee, and so that's all we had, and then we.

Just went to get something mindless to eat at the very end of the day. And it wasn't anything that felt good, it was just what we needed in order to actually drive back home. So it, it's more than the, it's the logistics of the day, you know, the hospital. I have to say, if you are go to a place that everything's crammed into a day, that's much better, especially if you're not near the hospital, to not have to travel back and forth or to have the additional expense of, you know, staying somewhere overnight.

But it isn't always made. To have any kind of break that is of substance for the people who are going to all those appointments. Because I get it, the people who are scheduling it, they're just trying to make it work however they can with all of these thousands of people coming into the facility. But when you get there and you realize that something has gone long, You know, which happens at some point, you know, CT scan, you're waiting an extra hour for that, you're stressed out that you can't, you're not gonna be able to make it to the doctor's appointment, which is still gonna be late anyway.

And so you're always running. So if you're not just going and having one treatment in one room, but you're running around, Having something to eat sometimes can be something that you know that you need and it makes it worse because you realize you don't have the time to do it. So to be able to have that service, I mean, I would've loved it to have it where I was and that time.

Yeah. Because now you are, right now servicing families in Chicago. Is that correct?

Courtney Johnson: Yes, we are. We're currently in Chicago. So we work with a lot of the major cancer centers there. We've delivered around over 30,000 meals in, in the 10 years that we've been around. And our hope is that we can, you know, the number of times we hear, I wish I would've been able to have this service while I was going through treatment.

The hope is for us to, to at some point not hear that anymore, and for it to turn into. I'm so glad that I had this service while I was there, instead of hoping that, that, it would've been really nice to have, and I think that you brought up a really good point too, is just, you know, in terms of all of the logistics of the day, there's also the added expense of the day.

And so for a lot of the families we serve, they're, they have to pay for gas, they have to pay for parking, they have to pay for all of these medical bills and things. And so there's like, I have to pay for all of this, and I have a choice. To not pay for my food. And it's just crazy that you even have to make that choice.

But it's really, you know, for us, a big part of, of why everything is free and just our motto is just food should be one less thing for families to worry about. It should be something that brings joy into their lives and, you know, eliminating as many barriers as we can to being able to have that, that moment of, of just like, Respite from all of the chaos that that can, you know, be surrounding you is really.

Really what we're, what we're hoping to do and expanding into new, new cities beyond Chicago is definitely, is definitely top of mind. There's not a week that goes by where we don't hear from somebody asking if they can start our program in their community, bring our program to their community, or if, you know, if we are located there to be able to help one of their loved one that's loved, ones that's going through it.

So, Yeah, it's definitely been a big priority for us over the next decade to to, to ramp up and be able to help as many people as we can.

Charlotte Bayala: Now, if someone is listening and would like to be able to use your service and contact your organization, how does that look once you, you know that this is something you wanna do?

The next step would to be contact or call or email contact that's on your website. And what should they expect for it to feel like as they go through that process? Yeah, so we,

Courtney Johnson: the best place to start is either, you know, at your hospital. They should let you know that our program is there. If you find that you are on our website and you see that we are at your location and you haven't been told about us, that's no problem.

On our, on our website. Culinary care.org/program-registration is the best place to start, and we can share that link with you. We have everybody schedule a welcome call, mainly just so we can just share that there is like a human here that's supporting Make sure that you know the program is gonna be a good fit that you know we deliver during their timeframe and that you know, everything, everything lines up.

And then also just let them know these are the types of. Meals to expect. This is just like the overview of how we work. Yeah. Because from that moment forward, we'll have that person checking in with you. Just depending on like your treatment schedule. So if you go in once a month, we'll probably, you'll probably hear from us once a month.

But if you go in every other week, we'll just make sure that we're constantly in touch and checking in and then You can log into our app if you're tech savvy and you're like, I just wanna do this all on my own, and I'll, you know, have the check-in calls and texts of my reminders and things, but I'm just gonna go on, you can log into your, our sort of like patient portals that we call it.

Just click order meals and then the menu for whatever day you're going in for treatment, we'll pop up and you can order. So we've come a long way. It used to be, In the very early years, like 2013, you had to like print out a piece of paper, write down all of your things, and then we would enter that and it was like this whole process.

So having this system has made it real, like as, as, as much as we can have it be like one less thing that you have to worry about. So, That's really what our goal is is and what the process looks like is just to give you as much control and flexibility over ordering meals, but also knowing that there is like, there are real people that are thinking about you, that we care about what you're going through and if you have any other.

Needs that you need support with. We can refer additional resources. We can be an advocate for you. We've, we've contacted, you know, different organizations or services on behalf of our patients, just to make sure that, you know, we can, we can get them as much support as possible. And I think the big thing that we want our families to know too is that.

This is like, we are here for you and with you from the first treatment until the last. Mm-hmm. So some of our families have been with us for, you know, over three years now and that's totally fine. Like you can, yeah. We're just here. And I think that that's really important in what we wanted to create is just a lifeline where, You know, like we're not dwindling away and it's not any burden to ask us like we are here literally to serve you.

And to be it is, you know, our pleasure and honor to be invited into your community and to be able to, to support you. And a lot of our families come to us when they don't want to share their diagnosis with other family members may, whether it's that they're not ready or whether they just like never really wanna be, you know.

Looked at differently or anything like that. Yeah. You know, being able to have this resource to go to when you just don't feel like you can turn anyone else is, is really important to us. So,

Charlotte Bayala: yeah. And, and it's difficult especially when you first have a diagnosis. If you do tell your family and friends, you have an outpouring of help, but that.

That starts to slow down. It doesn't always continue throughout the treatment. You know, I think it's hard for people who aren't, who don't have the experience of cancer in their home to understand that as long as that person's alive, Even after, let's say they are in remission or they are cancer free, there's still cancer in the home.

You know, it doesn't just go away and the need for help and support doesn't just go away. I think it's difficult for some caregivers to even ask for help in the beginning. Because all, some people just feel, first of all, like they should be able to like meals. Like they should be able be able to do that.

That's a normal, you know, chore that an adult would do and don't. Give themselves the grace of just not having to do it, just being okay with asking for that help. But you know, in all honesty, I'm sure that there are some situations where people feel like they'll be judged if they, if they can't provide meals or they got, they have a freezer bowl of frozen casserole that they just can't.

Handle anymore. And they, and they can't take to the hospital with them either. Right. So there's a lot of different ways where asking for this is hard to do, especially when the caregiver or the person who's the patient is asking people who they know. We can't assume that, you know. They, they, everyone should just be able to ask for help.

It's not that simple. It's not that easy. There's a lot of, there's some people can be overbearing with, with wanting to know information. Like you don't just get a meal. Like sometimes someone will bring a meal and then they just don't go away, right? And you, and you're tired and you, and you love that they're there.

And maybe, you know, the first 15 minutes, like you really needed that human interaction. Which I'm sure they get when they meet the person from culinary care that's bringing the food and they get from those checkup calls. You know, just checking to see how they are and, and making sure that they don't need any meals ordered, like they get that human interaction, but, There's a separation because the culinary care person comes in, they talk, they get the meal, they can leave.

There's no judgment. You don't feel bad about it. You can you, I'm sure you could simply say, oh my goodness, thank you so much. I gotta go. And the culinary care person wouldn't care. It, it wouldn't have been, well, they didn't sit around and talk to me for a couple of minutes after I found parking and brought the meal in.

So I think that even if you had someone who would bring the food to the hospital, it, it makes it emotionally easier in some cases because you're getting the support from someone that you don't feel. Like you're indebted to, and then that you do things that will just really rob you of any energy or emotional bandwidth that you have in that day when they're bringing you a meal.

So I think that's another important thing for people to really take into consideration because. A lot of people just wanna do it on their own. Sure. I mean, I, we've all done it on our own and we've kind of quote unquote suffered through. But this is an organization that's simply saying, you don't have to suffer through in this way.

Like, let us help you so I, I think that that's an important. Aspect of culinary care that people really need to take into mind. It doesn't, as far as I know, it doesn't matter if you were diagnosed yesterday or two years ago, right? Yeah. They, they can come in and, and ask for help and make that phone call if they're listening to this right now and they're like, I didn't know this existed.

Like, I really need this. But what about people who are hearing about this and want to volunteer? Is there a possibility for people to volunteer with culinary care?

Courtney Johnson: Yeah, the most meaningful way to help right now is to join our monthly giving community. That is just where we're at as an organization and it can be $10 a month makes a world difference.

Mm-hmm. And then in terms of volunteering, you know, that is really driven through. Our monthly givers, our volunteers and a lot of our, our corporate partners are volunteers. And so there are opportunities we have within that to, to get involved. Whether it's preparing chemo care kits that we have through offices or actually getting on the road and delivering meals.

Is all, is all sort of, we have the starting point coming through either monthly giving or, or getting your company involved. Okay.

Charlotte Bayala: And there's, and there's information about that on the website? Yes. Okay, good.

Courtney Johnson: Yeah, all that. So,

Charlotte Bayala: because I think that putting chemo kits together is a good way to have a team building exercise at an organization.

You know, doing something to bring office. Fellow office mates together while helping a group of people or even, you know, people in Chicago, there are so many races here. Yeah. So finding a way to use that. There's so many runners, you know, so there's a lot of creative ways to help to give. And then if you're, if there's a restaurant.

Owner who's hearing this, is there a way that restaurants can become part of the program or do you have a set group of restaurants that you work with?

Courtney Johnson: Yeah, for restaurants, they're, you can fill out any of the contact us information on the site and just let us know who you are. We do have parameters that we work with.

Mm-hmm. And so we'll just fill you in on what those look like and if it is a good partnership, we can move forward from there. So yeah, if there are restaurant orders, we're always looking. Really our focus is on just high quality ingredients. The capacity to be able to prepare, like sort of large individualized catering, catering orders.

Mm-hmm. Everything needs to be individually packaged and boxed. And also just has to have a variety of different items that can meet a large variety of different dietary restrictions. So just making sure that we have as many options as possible for our families is. Is really where we sort of look at with our menus.

And so if you're a vegetarian, like we don't want you to feel like you're just getting the side salad from the menu. Like we only will get partners that have that have like real substantial menu items. I think our most common are gluten-free vegetarian. We have a low sodium focus across all of our menus and we work with dieticians that help us really select the menu items that are gonna be the most nutritious for our families.

So, and that's from the restaurant side of things. We do have we're running as a community in the Run Mag Mile race on September 9th in Chicago. Nice. So that's a really just like beautiful, fun race to get involved with. So if there are a lot of runners, I'm glad you mentioned that cause we've got a, a growing community of runners, so it's been exciting to, to see everyone crossing the finish line with us.

Charlotte Bayala: Oh, that's great. We'll have to remember to put a reminder out there when it gets closer. To that or when? Do you have a group already put together, like p should people look for that if they run to sign up? Yeah,

Courtney Johnson: they have, we just do it on our website so they can just sign up like directly through us.

So we kind of bring our own, like, it's almost like our own micro community of the, of the race and people have already been signing up. So you can fundraise for it. You can join as a monthly giver. So we have two options to join on that side. But it's really just. You know, a more meaningful way to cross the finish line.

You can obviously join the race on your own and pay the 60 or $70 fee, but you can cross it with us and know that you've changed someone's life and eased the burden of, of fighting cancer and made sure that they have, you know, a good meal. And I think with every mile you can really feel the, the love and care that goes into, you know, the meals that we deliver.

So yeah, it'll be extending far beyond the, the finish line

Charlotte Bayala: and running in a group is much. More exciting than it is running by yourself.

Courtney Johnson: Yeah, and last year we had our own, we have our own private space with like our own porta potties, our own tables and chairs, which apparently is a hot commodity at these races.

And so we had no lines for our bathrooms. People were, you know, asking to get in. This is just for our community. So it was my first race experience last year and I'm like, wow, who knew? Just having a accessible bathroom in our little tented space would be, that would be so big. So, yeah.

Charlotte Bayala: That's awesome.

That's exciting. Yeah.

Courtney Johnson: So lots of, lots of fun perks.

Charlotte Bayala: Yeah. We'll have to have more people that are runners in Chicago look that up. If they're not already in a group and you're already gonna run it, why not? Yeah, exactly. And, and to have the people on the side just like cheering you on. Cuz I've been at some of those races and when the, the specific group members of the people there to cheer, you know, when they start to come by, like the cheering gets louder because they're there to push you along.

So I really, I love that. And you know, it just enhances the race experience. So if you're, if you're planning on doing it and you are. A solo racer, definitely it's worth it. Plus it, it helps other people so it just makes the race even more important and exciting. So yeah, come, we'll have to come make new friends.

Yeah, definitely. That's awesome. Well, is there anything that you would like to kind of share with someone who's listening to this right now who's on the fence? Not sure if culinary care is right for them, even though you and I both know it is.

Courtney Johnson: Yeah, I would say just. Order a meal and see how it goes.

The number of times we've had people reach out and say, well, I have no appetite. I don't think that this is gonna be a good fit. And then they get a meal and they're like, I know I said I had no appetite, but. I have eaten this entire meal. So I think that the biggest hurdle is really just getting that first meal delivered and just seeing what the experience is and you know, just, just seeing if it's for you.

And food is personal, so we get it. We know it's not, you know, it's, it's not for everybody, but, you know, we have we, we do a lot of really, Meaningful work to make it the best experience possible, and we're working tirelessly towards that. So yeah, I think just, just order your first meal. It's, we try to make it like a 15 minute welcome call.

Like there's not a crazy amount of forms. Like we really try to make it one less thing for you to worry about because we know that they're. Are so many things in so many directions that, you know, our families can get pulled in and yeah, we just wanna say, this is like 15 minutes. We'll talk through it.

And then from that moment forward, whether you order with us, you know, once, or whether you wanna order with us for the rest of you know, treatment, you just be able to have like that, that one moment where you are getting taken care of. And just everything we love about dining out, just getting that hospitality inside the hospital, so, right.

Charlotte Bayala: Yeah. Right. At least at if e just try it. You'll be the envy of everyone else that's around you. You'll get to tell everyone how you had like this, this awesome hookup with culinary care and they just brought you the food. I mean, maybe just imagine you're telling someone about it as you're holding the food and smelling it, and that feeling that you would get from just.

How stressful the moment before you were holding onto this food was and how much better you feel and someone's asking you, wait, how did you get that? And you're telling them, you know, just I Sometimes I feel like visualizing yourself in that moment before it actually happens actually helps you get over whatever the roadblock is that's stopping you from taking that, that last step that you need to in order to do something for yourself.

Yeah. So,

Courtney Johnson: You just have people that wanna come show yourself, like going through the day. And instead of feeling really stressed out and not knowing where you're gonna get lunch and then going home and feeling hungry and tired and, you know, probably a little hangry about everything. Mm-hmm. It's, you actually just get to go to treatment.

A meal is just gonna come to you while you're there. We find you. Yes. Like we have navigated the late doctor's appointments. We've navigated like all of the things, the nurses work with us, everyone is just really incredible in trying to make sure that, that you get your meal and that, you know, you can open it and feel like this is just like a moment to, to relax and a little bit of an escape from, from yeah.

Just everything else that's going on. And so, I think just, you know, feel free to read some of the quotes on our website and just see the happy faces. If you go to the program registration page, you'll see a lot of the selfies that we have submitted from other families that have joined. So yeah, it's really, and these are really amazing restaurants.

Like we, I, we pick partners that I think my dad would really appreciate and love eating at, and that, you know, are able to make it more of an experience so,

Charlotte Bayala: Yeah, that's awesome. I, I am so excited to have learned about this and to be able to, you know, do what I can to let other people know about it because it's, it's definitely a support that I haven't seen anywhere else.

And so, you know, hopefully, This will show up in other cities and states as you move forward, but let's get everyone in Chicago to know that this is there for them and get them ordering those

Courtney Johnson: meals. Amazing. Yeah. I mean, we're, we're here for you and and ready to grow. So any, anyone that that needs support, we're, we're happy to

Charlotte Bayala: help.

Perfect. Well, thank you so much for being here with me today. I really appreciate you sharing your story and for all the work that you're doing to support the cancer community.

Courtney Johnson: Thank you. Thanks for having me and for just so deeply understanding the, the work that we do.

Charlotte Bayala: Thank you for listening to my conversation with Courtney. You can find more information about culinary [email protected].