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Caring for Men Who Are Cancer Caregivers
Kyle Woody
October 31, 2018

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Kyle Woody is cofounder and executive director of Jack’s Caregiver Coalition, a community of men who are cancer caregivers. Kyle believes that one of the biggest and most important challenges a man can face in his lifetime is engaging as a caregiver for a loved one with a serious disease such as cancer. Kyle believes that every man has the potential to rise to that challenge and be his boldest and most confident self. Reflecting on his experience as a primary caregiver for his spouse with metastatic colon cancer, he realized the principles of excellence and sound teamwork that he preached in his professional career should have been applied at home in his caregiving experience, which is why he helped found Jack’s in 2014 to improve the way men think, feel, and act in their role as cancer caregivers.

Listen to the podcast to hear Kyle talk about:

  • how Jack’s was founded
  • some of the programs Jack’s offers to help men who are caregivers
  • some things that he’d like men who are cancer caregivers to know
  • why caregiving is akin to a team sport

Running time: 37:31

Show Full Transcript

Jamie DePolo: Hello, everyone. I’m Jamie DePolo, senior editor at Welcome to our podcast.

Kyle Woody is co-founder and executive director of Jack’s Caregiver Coalition, a community of men who are cancer caregivers. Kyle believes that one of the biggest and most important challenges a man can face in his lifetime is engaging as a caregiver for a loved one with a serious disease such as cancer. Kyle believes that every man has the potential to rise to that challenge by being his boldest and most confident self. Reflecting on his experience as a primary caregiver for his spouse, who was diagnosed with metastatic colon cancer, he realized the principles of excellence and sound teamwork that he preached in his professional career should have been applied at home in his caregiving experience, which is why he helped found Jack’s in 2014 to improve the way men think, feel, and act in their role as cancer caregivers.

Kyle, welcome to the podcast.

Kyle Woody: Thank you, Jamie. It’s an honor to be here. I’m excited.

Jamie DePolo: To start, let’s give folks a little bit of background. How did you first hear about the concept of Jack’s and meet the other co-founders, and how did you decide to get involved?

Kyle Woody: Well, that’s a great question. I would say I’m the founder, so the idea, the spark originated in my brain. So that’s how I found out about it, and it’s been a while. And Jack, when I go places and people say “Are you Jack?” No, I’m Kyle, and it’d probably be weird to name a nonprofit after yourself, so that would be weird, but Jack was a man whose message was “serve the caregiver.”

I was the first one to receive his message. Some friends came to serve us in a really, really tough time, and we were going to do all these things, we had all these agendas for stuff they had to do during the week. And they sat me down across the table and said, “We’re here to serve you.” And I said, “I don’t get it. I’m not sick. I don’t have cancer. She’s the one that needs to be served.” So they had asked Jack, “What do we do for a family that’s really going through a crisis like this?”

He had lost his loved one to cancer, and so he knew from experience, so he knew that far too often, the caregivers are overlooked by not only the medical community, but by society at large. And so that was his message, and I was the first to receive it. And so, when that service came to me and that message, it took me a while. You know, us guys, we’re a little slow, it takes things a while to click, but it eventually clicked. And the power of that message and its simplicity… I had this burning desire to pay it forward.

So I found someone else to serve that was in a similar situation, and the service for him looked totally different. He and I started talking and said, “You know, we really don’t see anything out there like this that currently exists.” So many terrific, great nonprofits with incredible missions, but largely they are run by women, and, largely, women are a part of their missions, more actively engaging.

So for us guys, it’s a bit of a challenge to feel comfortable. We’ll take our wife to this place to do these things, we’ll bring our kids, and then we go do other things. So we said, “We’re going to fix that. We’re going to create a community, a place for men.” It’s not necessarily for just men. There are just as many women on our volunteer teams as men, but it’s for them. It’s designed for them. It is the things they would want to do. That’s our programming.

Jamie DePolo: Jack, then, when you heard his message, there was no formal organization?

Kyle Woody: No.

Jamie DePolo: It was being done on a much smaller, more one-on-one basis?

Kyle Woody: Yep, just friends of family. That was 2012 when that conversation took place, and in 2014 is when Jack’s itself was actually, when the three of us cofounded the actual organization.

Jamie DePolo: Is Jack, himself, involved with your organization?

Kyle Woody: [laughs] He’s not, and I’ve never actually met him, which is also weird. He was a friend of our friend, so removed. I almost kind of prefer it that way. He’s this sort of god-like creature that lives somewhere out in the ether. That’s kind of fun. It would be interesting to meet him someday, and hopefully he’s doing well. If he ever hears this, I wish the best for him.

He represents all the men who came before myself and our founders and him. For too long, they’ve not had a community, they’ve not had a place to go.

I tell people, when my spouse was diagnosed on the eve of Thanksgiving, she had on the phone with her on Thanksgiving Day a colorectal surgeon that put her mind at ease. He said, “Hey, if this tumor had been in your rectum, this would be a whole other ballgame. So this is great news. It’s still a total crisis, but here’s the good news…” kind of thing. So that was within 24 hours.

I tell people that I went the better part of 3 years before there was ever really a community, this feeling of like, “Ok, I have a place to go, there’s someone that’s here for me.” So that’s our vision, and that vision is largely realized here in the Twin Cities. Our promise to these guys is, within 24 hours, you will get a response from us. They largely don’t reach out to us. It’s usually the women in their lives saying, “Hey, we’d like you to reach out to this gentleman.”

But that’s our promise, is that right away, you’re going to find support. We don’t say support, because guys don’t like that word, but we’re here for you and whatever that looks like. That’s what it’s all about, providing that place, that comfort. We get it, so a lot of times you don’t have to talk about anything at all in our groups because that’s the shared understanding.

It’s not unlike the breast cancer community. When these women and men come together with breast cancer, they get it. They’ve been there. They’ve done that. And caregivers have a similar but also very unique experience with cancer.

We’ve had a lot of unique requests from people coming to our events or our programs. Different caregiving perspectives, such as, “I’m my own caregiver,” or “I don’t have a caregiver.” So we go back to the drawing board and say, “Ok, this is a new one. What do we do with this?” Ultimately on that particular issue, we decided, that’s not who our community is for because It’s very unique in that we aren’t physically sick, but we psychologically experience the disease still. The funny thing is, your brain doesn’t really know the difference between psychological and physical pain. To your brain, it’s largely the same.

So we have to make those tough decisions about the caregiving community. The slice of people who play that role in their life is so big. According to AARP, there’s 16 million men [caregiving] in the United States, just men, and they’re only 40% of the pie that are playing this role. That’s organizational leadership.

These are the tough decisions we have to make, but we decided we want to take a slice of this pie and crush it, like do it really well. Let’s not spread ourselves and our resources too thin. We will connect those people with the other organizations, so many others that are so good at so many things. Like having licensed professional mental health people on their staff. We do not. We’re just guys who have been there. We don’t have degrees, we don’t have any of that stuff, and largely, when we tell guys, they’re like, “Oh, thank God. I don’t want somebody trying to figure me out and fix me.” But there are unfortunately, times when that’s exactly what they need. So we connect them with those folks and our community because they’re there and they’re doing great work. But that isn’t who we are. We’re very transparent about that.

Jamie DePolo: Do you think that men who are caregivers face different stresses than women who are caregivers, and if so, what are some of those differences?

Kyle Woody: That’s a good question, and I think initially my gut reaction is no, because it’s the same technical things that are done, the same experiences. Men or women, or whatever, you’re a human going through this. I think the response it different, and I don’t really like to put people in these buckets. It’s never that simple.

I think also it is true that it might be slightly different because a lot of the men, and this is my own story, are the primary breadwinners of their household, so the stress to keep that ball in the air is… I don’t think it’s more important, I just think it’s different. Obviously women work just as hard in the household, arguably harder, because I’ve done some of that with my boys, and holy smokes! But yes, I think, kind of like anything, yes, it’s different and yes, it’s the same, but our response to it is different for sure.

I’m not a professional, but I do read a lot of crap on the internet that probably isn’t true, and some stuff that I’ve read talks about men and this testosterone thing, where it’s this fight-or-flight type of thing, and that tends to be the male response to stress, and what I’m seeing more and more is flight.

And in my career, it took me a long time to realize this, but I was coaching men who were running large construction projects, and every one of them, they start to get in a bind with this project and the pressure starts to build, the deadline approaches, and everyone starts freaking out. So when the men start freaking out, what that looks like is, retreat and isolate. So the 10-hour days turn into 12, and then it’s 15, and then it’s 20, and pretty soon they’re not going home, or they are and they’re bringing their work with them and they’re just going to grind through it and get it done, one foot in front of the other. Whereas what I see in women is more to tend and befriend. You know, reach out and connect, and build a team. So I think it’s the same stressor — back to your question — fundamentally, but in men our response is different. So what we’re hoping for, maybe fight isn’t the right word, but engage, really lean into this thing, and let’s not pretend it’s going to go away or wish it away, or try to work it away alone.

We’ve seen statistics — 78% of men who are caregivers report having no help, so wrap your head around that. What’s going on there? I think it’s that flight thing — it’s grind it until you find it, and it doesn’t work. When guys come to me and ask for advice, I tell them, “You can do this alone, but you’re going to suck at it, and if that’s what you’re after, striving to be mediocre, then knock yourself out.” We’re not here to blow smoke up your butt and tell you this is going to be easy, but you can’t do it alone. If you do, you’re not only letting yourself down, you’re letting your family down, because there’s a lot of people that want to engage. They need you to be a leader, not a doer, necessarily. I don’t know how we got onto all that, we went into some rabbit holes.

Jamie DePolo: No, it’s good to know, too, because I think what you’re saying has been echoed by some of the people on our discussion boards who say, “My husband won’t ask for help, he seems very isolated. I don’t know what to do.” So I think it can be helpful just to know that it’s not a good situation and that men can be helped in that way. Do you think that people who are cancer caregivers have unique stresses compared to people who are caring for loved ones with other diseases that are not cancer?

Kyle Woody: Yeah, good question. I don’t know. I don’t know what I don’t know about Parkinson’s or Alzheimer’s. I can speculate about these diseases having unique challenges, but I think largely when you strip it all away, what we’re dealing with… Often, in the cancer world, what I see most is it’s this “asteroid hitting the earth” kind of moment when the diagnosis comes. The challenge is largely change, change on so many levels. Some people are quick to adapt to change and others not so much.

And so when I look at the other disease communities — and I’ve not done a lot of that — but I think some of them are much slower. They sneak up on you and the symptoms progress slowly over years and decades, so then the change challenge is not as intense, but it’s chronic, it’s these long-term things. I think my heart hurts the most just thinking of the Alzheimer’s community and the mental health world, that it’s not a math thing. It doesn’t make sense. There’s no cure for those things, and so surely those folks have maybe not tougher challenges, but just different. I think you strip it all away for caregivers… you’re dealing with a lot of the same fundamental things that they need to do and awarenesses that they need to have that transcend the disease, so to speak.

Jamie DePolo: So let’s talk about some of the programs that your organization offers. Can you give us some examples?

Kyle Woody: I can. So the question we ask ourselves is, “What would guys want to do?” And then that’s what our programming largely is. I don’t know if everyone’s noticed, but there’s this, call it the experience economy that’s out there, it’s just stuff to do, it’s everywhere, and there’s more and more of it every day. So we just connect our men to that economy.

We had one guy say, “You know, Jack’s is just really essential to take the logistical reins and get us together.” We do that logistical work, which is not complicated. We set the date. We set the time. And we get the word out and people come. One of the guys said, “Men just aren’t as good at activating relationships as women are. We’ll kind of sit back and wait for someone to tell us when and where to be, and then we’ll decide whether or not we’re going to do that. But we’re not very proactive in activating those relationships.” So that’s what Jack’s does.

So, examples… so Meat. The Workshop. Meat, M-E-A-T, so, a man class about your favorite part of the food pyramid. [laughs] We bring in from the University of Minnesota a man who has a Ph.D. in meat.

Jamie DePolo: Is he a butcher? Is it butchering?

Kyle Woody: He is an academic. It is the science of raising bovine and all of the things that end up in the grocery stores. The guy knows more about meat than probably… there’s probably 100 people on the planet that know as much as he does, and he’s hilarious and excited to share his knowledge with us. So we brought the guys in. We learn, we do a tour of the facility and ask him questions, and then we go have a beer afterwards.

Jamie DePolo: No meat snacks?

Kyle Woody: No, no meat snacks, but they get to take meat home, but that’s a good idea for next year, to provide some Slim Jims or something.

So that’s an example. But also, axe throwing. Axe throwing workshops, we’ve done a lot of fishing, hunting, you know, those things that are, especially up here in Minnesota, very outdoor culture in the summer. Summers are brief, so we get all that we can. It goes on and on. We’re touring Paisley Park this month, which is where Prince hung out. Prince is a big deal up here, so we’re all excited about that.

Jamie DePolo: That’s so cool.

Kyle Woody: Yeah, and we’re excited, looking forward to Super Bowl 2019. We’ll be carving Vince Lombardi trophies out of ice with chainsaws.

Jamie DePolo: Oh wow!

Kyle Woody: Yes! That’s just kind of… What’s going on there is, we want guys to want to do this stuff, and let’s be honest, we have a lot of great community partners that are, like I said, largely run by women. I’m hearing from them more and more, they say, “We wish we could come to your events!” So it’s not just guys that enjoy doing this stuff.

For the people that we serve, they’re dealing with a lot, and we said a mediocre get-together — which is kind of where we started in 2015, because a lot of us got together in coffee shops — well, that doesn’t get them out of the house and out of their situations. What’s easier for them is to keep putting one foot in front of the other, and it’s hard for guys to come to these events when they’re new. That’s scary. We’ve solved that by creating extraordinary experiences.

We do have more regular meetings that aren’t as expensive or flashy, but… We did extreme sandbox in October. We crushed a car with giant machinery. It’s a cool thing. It was on Shark Tank, the guy that started this. We’re playing with heavy equipment, and the guys just absolutely loved it. We’ve spray-painted cancer onto the car before we smashed it up. We not only smashed it with giant hydraulic machines, but also bats. Call it what you want, but I call that therapy.

Jamie DePolo: Yeah, cathartic, I’m sure it was very cathartic.

Kyle Woody: Extremely. Also a little frightening, watching what these guys did to that car. But it was very safe, we had all the safety equipment. We also do a very specific thing differently, which we call Jack to Jack. And that’s kind of how we started. So when I met Justin, it was just he and I in a place, right? So for a lot of men that’s a lot better, especially in the early stages, because coming into a group setting can be really tough on people, especially with social anxieties.

So Jack to Jack, you know, there’s a ton of peer-to-peer… Imerman’s Angels and those types of organizations that already exist. We’re in the stages of deciding because ours is very, people like to say “organic,” which basically means nobody’s really working on it. We just say, “Hey, this guy lives in this part of town, she’s stage II breast cancer. Let’s find a guy in the network to team him up with and let them go just hang out.”

I think in the future that is going to look a little different in that there’ll be some videos for the coaches or the instructors to watch to help give them clarity that they know they’re doing a good job when they mentor somebody. I think and I’ve heard that that may be the single most impactful thing that we do as an organization, is just matching these guys up. A lot of times they meet at our events, and we tell them to get each other’s names and numbers. You don’t need Jack’s to go grab a beer with somebody, just do it.

But I think the core of it is, we bring these men together, and our hospitality is what does that. Together they get better. They share lessons learned, it’s just incredible the amount of… Learning is a social phenomenon. For a lot of guys and myself especially, I can read a book and get the information, but really learning is social, often. The learning that takes place at these events is impossible to measure, but it’s huge.

Jamie DePolo: Jack’s is based in Minnesota?

Kyle Woody: Yes.

Jamie DePolo: So I’m assuming that most of the people that you’re serving are also in Minnesota. Can somebody be part of Jack’s, or work with Jack’s, if they don’t live in Minnesota?

Kyle Woody: That’s a great question. We do have a team that’s starting up in Austin, Texas. They decided to affiliate with us. We’re in conversations with some other folks who want to bring our vision and mission to their geographic community. We tell them all the same thing: it’s going to take strong leadership. And we challenge them, because usually the people who are the most passionate are the ones with the least capacity to do stuff, which is a challenge. So we take it slow. The group in Austin, we said, “You don’t need a website and all that stuff to start getting your group together. Just have a barbeque. Go hang out and shoot the shit. That’s just kind of what we do anyway. Then if that starts to pick up steam and you want some more formality around it, and you want to say you’re Jack’s, then we’ll talk after that.”

So we do have some things that we’re looking at. Next month is Family Caregiver Awareness Month, and we’re going to be doing some podcasts, and Twitter chats, #menwhocare. So we’ll be inviting organizations like yourselves to have a national conversation around this thing called “men that are caregivers” and some things like that that are more media-based and really sparking... Our mission is to inspire people to reconsider what men are capable of, so we’re doing that in a number of ways.

I think your question was something specific to Darryl in Atlanta…?

Jamie DePolo: Right, somebody who’s listening to this podcast in Ohio or California and is thinking, “Oh wow, that would really help me,” is there something for that guy there?

Kyle Woody: Yeah, I would say reach out to us through our website, and you will have access to me, and we will talk, kick things around, brainstorm. We want to inspire people to act and do things to start to mobilize their Jack’s. That doesn’t necessarily mean we end up having a presence there, but it could, and what we want most of all is for them to start engaging as caregivers and leaning into it, and starting to wrap their heads around how important it is, what they’re doing.

Jamie DePolo: To close out, are there a few things that you would want men who are cancer caregivers to know? If somebody, as you said, the asteroid has hit the planet and everything is happening really fast and things are changing, what are some things you’d want that person to know, that man to know?

Kyle Woody: Yeah so, the newbies become the newly enlisted. We have a blog post written about this. We call it The Beginner’s Creed. It’s a very short read, but it’s going to help you set the stage for the emotional challenges that are coming your way, about being a beginner and what it is to tackle something, especially as an adult, that is brand new to you. All these words that are thrown at you and you’re asked to become a medical expert overnight. That’s one thing for the newbies.

And newbie or not, a lot of the guys that we come into contact with have been doing this for a long time. Cancer and so many situations has become a chronic, long-term, new normal thing. So there’s no end in sight, and I think even for them, appreciate what you’re doing.

You need to learn to appreciate what it is that this role is. You have all these different roles you play. You’re an employee. You’re a son, a father, a brother, and a husband and all these things, but now there’s this other one, and there’s very specific things and challenges that you need to learn to appreciate.

A story I tell is, my spouse, she would get on a Wednesday infused and come home and largely be unconscious for the better part of 3 days. I realized later that I wasn’t unconscious that whole time. I was experiencing all of that, and that doesn’t mean my experience was easier or better or anything, but I didn’t appreciate how hard that was for me, to watch her get in and out of bed, to see the bones in her ribs, you know, Auschwitz kind of flashbulb memory stuff, that was very traumatic.

So most of these guys are experiencing that kind of stuff. It’s very psychologically challenging, and being stoic and shutting down and sort of just wishing that stuff away isn’t appreciating what you’re doing, the magnitude of it. So that’s number one — appreciate what you’re doing.

Another thing is, we believe it’s a team sport. What we see a lot of these guys doing is running the ball on every play. It’s like, “Okay, you’re a football team, and that’s how you’re planning to win is you take the ball and run it up the middle every play? You’re going to get crushed.”

So who is on your team? What roles do they play, or what roles should they be playing? You need to think in terms of being that coach or that quarterback that’s designing the plays and not necessarily executing them. But I’ve heard so many interesting things from our guys about that. There’s one guy who says, “I asked my friend to play the ‘check in on me once a week’ role. He texts me every week and just asks me what I need. Depending on what’s going on that day of the week, it might be, ‘Hey, I need you to run to the grocery store for me.’ It might be, ‘Hey, come and hang out, and let’s grill on the deck tonight.’”

He’s very specific in his instruction to his team about what their role is and what he needs them to do. The cool part is about that that people love that. They love that clarity.

Jamie DePolo: I can imagine, because so many people, I hear this a lot, so many people want to help but they don’t know what to do.

Kyle Woody: Right, right.

Jamie DePolo: And if you can tell them what to do, it helps you, and it makes the person doing the helping feel really good.

Kyle Woody: Absolutely, and they are loved ones. They want to be on the team, and when you are making it all about you, you’re robbing them of that opportunity. So they’ll do whatever. They’ll bring the casserole — the 50th casserole — that you’re stuffing into your freezer somewhere.

Help, sometimes, is telling people what not to do, that’s another thing. Stop with the casseroles. I need you to help me out by stopping with the casseroles. That is help. Or no more lizard tea recipes, like stop with the lizard tea.

Having the courage to step up and take control is part of when you engage as a caregiver and become that strong leader that your survivor — or “caregetter,” as I call it sometimes — needs. They need that strong leader that every man has the potential to be.

You tapped into something there, Jamie, with the people that want to help. It’s another point I wanted to make about awkwardness. When we come into this new world, the social norms that everybody goes through life with — you know, “Have a nice weekend!” — suddenly that doesn’t work anymore.

It’s like, I’m going to tell Jamie to have a nice weekend, but she’s going through breast cancer treatment and I’m pretty sure it’s going to suck. So I don’t know what to say, so a lot of times I just don’t say anything or I’ll ask how is Jamie doing, or what does Jamie need, or how can I help? Right? I’m looking for that way to help.

But strip all that down, and you get to this thing that’s the social norms no longer apply to people in this world, and so what do you do with that? I think what you do with that is start calling it awkward and move on. Stop trying to feel socially normal with the… let go of the pursuit of that feeling and just call it out like it is with your loved ones. Say, “Hey. It’s awkward. I get that, dad,” or mom, or whoever. “Stop. Let’s just move past that, and let’s start solving problems together.”

I see people wrestle with this awkward thing for far too long, trying to hang on to their old life, and hoping, and everyone’s journey is different. These aren’t universal truths by any means.

Those are some simple ideas that I think could really, really help people just become more — getting back to our mission of improving the way these men think, feel, and act, and acting being maybe the most important of those three — because if you want ideal results you need to have ideal behaviors. The behavior part is what we like to focus on. What can you do differently to help you get better outcomes?

Jamie DePolo: All those points are very smart, and very good advice, Kyle. Thank you so much for joining us today. I really appreciate your insight.

Kyle Woody: Awesome. It’s been a pleasure. Thank you.

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