A Jack's Caregiver Coalition Founding Story, Part 1
It started many years ago in Houston Texas, where he grew up.
He was the oldest in the family, with 3 younger sisters. His mom was a mother of 4 by day and a nurse by night. His dad worked in construction and eventually started his own business as a general contractor.
As a kid, things had always come easy to Kyle - if he ever really wanted something, he usually got it. He played baseball and the trombone, and became a drum major of his high school band. With good grades he managed to get a college scholarship.
His parents taught him he could solve any problem if he worked hard enough.
One summer while in college his car engine block cracked and needed replacing. His parents didn't replace it for him. Instead they bought Kyle a new engine block and challenged Kyle to replace it himself. He then spent the majority of a summer doing something a skilled mechanic could have done in less than a day.
He was the first in his family to graduate with a bachelor's degree. With that, came expectations.
“My dad came up through the trades,” Kyle begins. “On my birth certificate, it says he was a machinist. He also hung drywall and ceilings, and he taught me how to do some of those things. Eventually, he started his own business, so when I went to college and didn’t know what to do, I saw a bachelor's degree in construction science and jumped at it. After college, I worked on construction sites, managing the sites, but mostly in the office, on the computer, and not really doing the cool 'hands on' construction stuff that my dad did.”
“If you ever want to disappoint your kids who brag to their friends that their dad is in construction, take them to work and they find out you really just bang away on a keyboard and gab on the phone all day instead of operating a tower crane.”
In 2003, when he was supervising the construction of a healthcare facility in Burbank, CA, he met Sarah DeBord. She was a location scout in and around Hollywood and was hoping to use the brand new building's parking lot for her film crew.
“Location scouts were always coming around wanting stuff and most were overweight, middle-aged men, and I'd always tell them I was busy. But when the foreman called and said a cute blonde was there to talk to me, I made the time.”
They got along right away and started dating soon after they met.
“She told me later she knew the first time she met me that we'd be married - I just made her some copies and later she said it was my forearms that she really liked.” he claims.
In 2005 they piled all their stuff into a trailer and moved across the country to Virginia, where Sarah’s family lived. And on the way they stopped in Houston, where most of Kyle's family was, and they got married.
Once in Virginia they bought a ‘fixer upper’ home and Kyle found another job in construction, much like he had been doing in California. Their son Merrick was born in 2007 and their youngest son, Lachlan, in 2010.
Success to his dad - and to Kyle - was defined as providing his family with the security that money affords.
He was hard-driving right out of college and was driven to climb the corporate ladder.
It's how so many guys define themselves.
Professionally, things were looking great for Kyle - he was climbing the corporate ladder, just as he'd set out to do so many years before when he’d left Texas.
“I learned to measure success by the questions people I respected asked me. When I would talk to my dad or my father-in-law, their questions would be things like, ‘did you get that raise?’, ‘were you promoted?’ Success to them was the security that money afforded my family, the promotions, climbing the ladder. So that’s how I ended up measuring myself, too.
“I was hell bent on - number one - making as much money as possible,” Kyle begins. “The higher I could climb the corporate ladder, the better. A lot was expected of me by my family: I was the first to graduate from college. I wasn’t going to disappoint anyone.”
Things were really good. And then they weren't.
“I was in an email exchange with a possible employer in Dallas, trying to land a new gig that paid more, when I got the text,” Kyle begins. “It was from Sarah with bad news - she’d gone in to the doctor for a colonoscopy and they discovered a cancerous ‘mass’ in her colon.”
It was November 25, 2011.
“I’d never even known struggle or crisis!
“At the time, we didn’t even know what that 'cancer' word really meant. We were in denial at first. We were skeptical, doubting the doctors, but she was also bleeding quite a bit when she went to the bathroom, so I guess deep down we knew,” Kyle recalls.
Ten years earlier, when Sarah was 23, she’d gone into the doctor with bloody stools and had been told that her problems were from hemorrhoids. She had no further testing at the time. Over the years, her bleeding continued.
“We really should have known before we got the diagnosis. With Sarah’s family history…things had gotten to the point where she was going to the bathroom 30 times a day.
"We found out the day before Thanksgiving,” Kyle continues. “They’re like: ‘You have cancer. Have a great Thanksgiving.' They didn’t handle that well at all."
They were coming down on him - dreams, that is.
"We cancelled our Thanksgiving plans and spent the day crying and on the phone with the surgeon, who told us we were lucky because it didn’t seem like the cancer hadn't affected Sarah’s rectum, which would have been more surgically complicated. We didn’t get a lot of answers right away. There were more questions than answers. Initial scans revealed some ‘stuff’ in her lungs, but the spots were very small, so we hoped they were pollen or something else benign.”
They hoped that surgery would remove the 'spots' on her colon, followed by several months of chemotherapy, which would rid Sarah of the cancer.
Their plan was life going back to normal.
Several months after Sarah's diagnosis, however, they were told that Sarah’s cancer had metastasized into her lungs.
“I wanted to die! My dreams - all I had been moving toward in my life up until then - they were all disappearing. My wife was dying. The mother to my children had this fatal disease and there wasn’t a damn thing in the world I could do about it.” Kyle remembers. “My mom, who lived in Texas at the time, could probably tell I was struggling and anxious. She just said, ‘I’m moving in with you guys to help!’ No discussion. She dropped everything and moved to Virginia. It was a huge gift. I could keep working and my mom could help with Sarah and the kids.”
Life was almost normal.
“It didn’t seem overwhelming for me because my mom was helping us with stuff around the house. We had young kids, Sarah had all these appointments, and I was able to work and go to the appointments with her. My employer was great too. They didn’t expect a lot from me, and I was able to back off and work from the infusion room if I wanted to.
“Months after the diagnosis, I wasn’t even thinking about what I was doing with Sarah and her cancer as anything special. Then, in the summer of that year, something happened that really changed me. Sarah had some friends visit us from California - the Culp family. I thought they were here for Sarah. We had all sorts of things we planned for them while they were visiting, but when we started going over the schedule of events, they stopped us in our tracks and said to me:
We're here to serve you, the caregiver.
"Wait, what? They're here for me? I'm a caregiver?
Prior to visiting the Woodys in the Summer of 2012, the Culps consulted a man named Jack, a family friend who had lost his loved one to cancer. They asked him what was the best way they could help our family. Jack's message was simple:
Serve the caregiver. It's a lonely job and they’re always forgotten.
Jack knew firsthand - he had cared for his wife who had faced cancer. The Culps spent the entire week working through all the household chores that Kyle had fallen behind on.
Waking up to his situation
“The Culp's visit opened my eyes to what was going on. Jack's message made me pause and think." Kyle recalls.
"That’s when I started to feel some extreme emotions. Before that time, I had those emotions but I was determined not to feel them. Maybe I didn't think I deserved to be angry, I mean I didn't have cancer. The feelings were there though, I think. I kept busy. I would forget about the dire situation Sarah was in. Sure, we would cry once in a while, but after, once things started to seem okay, and we got back into the groove of things – infusion on Wednesdays, she’s going to be sick until Sunday - then you start to find your rhythm, and you start to think that this is just life. I did not appreciate the enormity of it all. I mean some of the suffering I witnessed with her treatments was unspeakable, at one point she was down to 95 pounds, I could see her ribs in her back."
“But even then, when I wasn’t feeling anything, I knew something that wasn’t right. I had something locked away somewhere. All this anger and grief. I was being robbed of all the dreams and hopes and aspirations; of conquering the corporate ladder; of the chance to become a corporate muckety muck at some big company. I was losing the opportunity to make my mom and dad proud of me.
“I wanted to be a great dad and a great husband. I wanted that perfect life, like everybody else has.
“I was barely 30 years old. I was still learning who I was and how to show up in the world; I was trying to take the world by storm, then this giant turd landed in my lap. The chess board I had been working on my entire life had burst into flames.
"I remember coming to terms with that truth. It was shortly after those friends had opened my eyes to my situation and had come to ‘serve’ me.
“It was about 8 months after Sarah had been diagnosed with colon cancer. I was in a hotel room alone at a conference and it finally hit me.
“I was realizing the situation. I decided to write about it - I had never written much but suddenly it was pouring out of me. I surrendered to all my emotions. It was beautiful. The unfortunate part was that a lot had been bottled up over a lot of time and it all came out at once. But the reality was I didn't feel safe doing that with anyone else - not even with my best friends or with Sarah or my mom. It was just me writing in a journal about all the feelings I had. I wrote my ass off. It just started pouring out of me, I wrote and I wept for days. People at the conference were wondering where the heck I went. It was powerful.
"It would have been better if it had been an incremental thing. It would have also been better had I not been alone. But the isolation is what made me feel safe. When I reflect on the reality of it, it really saddens me. I mean, what in the world? You feel more safe when you are alone than you do with the people that love you? That isn't how humans are designed to operate. I didn't understand then that feeling isolated was almost my entire problem and all I was doing was isolating myself even further.
"What's crazy is in the daily grind of caregiving, I was almost never alone. My mom moved in with us. Sarah was there, the kids were there. Life was constantly full of people who loved me. But I had never felt more alone in my entire life. I've come to believe that loneliness was the root cause of my volatile emotional state.
"And that's why at Jack's Caregiver Coalition, our vision is, 'A world where guy caregivers never feel alone.' I suspect that most guy caregivers in the world right now feel just like I did - Alone. And just like me, many only feel safe to feel their emotions when they're literally alone and no one is around.
“I thought of a lot of things during that time. One of the memories I really reflected on was something that had happened just a few weeks earlier. Sarah and I had gone to her doctor a short time after we’d found out that she had become metastatic. I remember Nikki, Sarah’s nurse, shouting to her from across the infusion room and asking her, 'what are you doing here, Sarah? I thought you were done.' This triggered Sarah to collapse on the floor, crying. Nikki runs over to her, gets down on the floor with her, and holds her tight. But I didn’t do shit – I just stood there, stoic like a horse in a pasture. Emotionally void. I couldn't let myself ‘feel’ this. I didn't know how to participate in this emotionally, so I just stood there. I hope I was at least holding Sarah's purse.”
“So, there I was, sitting in the hotel room and thinking about recent events like that; thinking about how emotionally void I’d been up until that moment; thinking about those friends who had come to visit us, to serve me, from all the way across the country. To serve me, the unwilling to-be-served caregiver.
“I suddenly had some clarity: I had to find someone else to ‘serve,’ like our friends had done for me. I knew I needed to find a caregiver, like me, to serve; I had to paint their fence, organize their garage, clean out their gutters, and do all the stuff that our friends had done for me.
I didn't understand it then, but this desire really wasn't about me performing some selfless act of charity. What I was really doing was longing for someone else who would deeply understand what I was going through; someone who had that unique superpower to make me feel less alone.
At the same time, Sarah was struggling. She was living with a diagnosis that was likely terminal, and they both knew it. She’d been wanting to move to the Twin Cities, where she had friends, for a long time, but it had never been a good time, with Kyle’s job and having the kids being uprooted and all.
Things changed for Kyle, though, when Sarah was given the news of it being metastatic in 2012.
“I just said, ‘okay, she’s metastatic and they haven’t given her much time to live, her time is limited, so I gotta' grant all her wishes.’ I had no idea what Minnesota was all about.
“My dreams…all that had mattered to me such a short time before was meaning less and less to me. Success for me now was to get Sarah to where she wanted to be most, to keep her alive, and get her the right treatment. It was becoming harder and harder for me to find any meaning in the day to day work I was doing.”
The Woodys moved west to Minnesota in the Fall of 2013.
“I had no idea what to expect in Minnesota - Texas maps don’t even go north of Oklahoma,” he says with a laugh.
And those promises he’d made to himself: to find and ‘serve’ other caregivers, went with him to Minnesota. They stayed with him. They were not forgotten; they were now a part of him.
“Soon after we’d moved to Minnesota, I was at a conference in Bemidji, just thinking about my situation with Sarah and her cancer,” Kyle recalls. “I had to talk to someone about what I was going through, and I met a lovely woman named Nicole at the conference, a banker, and I just started telling her what was happening with life, and how we had just moved to Minnesota, and I’m telling her about all this heavy stuff and how I was ‘served’ by some friends and wanted to find another caregiver to 'serve.' That I needed to find someone else who was in my situation to help.
“She’s like, ‘I happen to know someone – one of my clients has a son who is going through what you are going through with his wife’s cancer. I asked her for that person’s contact information. She sent her client an email telling her my story, saying, ‘I met this guy who wants to meet your son and talk about how he can help him.’ I ended up getting her client’s son’s email address, so I emailed him and just said, ‘Here's my story...and I want to serve you!' 'Who does this?' I asked myself as I sent the email. Who emails a person they don't know out of the blue with such a strange request. I guess I didn't know what his response would be. I'm not even sure I expected him to respond.
"But he did!”
His name was Justin.
Next: Justin Nicolay, A Jack’s Caregiver Coalition Founding Story, Part 2
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By: Mike McGarry
Mike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma. Mike and Tracy have 2 boys, Joseph, 13, and Jacob, 12. Mike has been a Jack's member since 2017.
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Visit AARP.org/caregiving for family caregiver information and resources.
Most people think of family caregivers as women taking care of their aging parents or children. What many don’t know is that 16 million family caregivers in this country are men. AARP is on a mission to break the stereotypes and ensure that all family caregivers, including men, get meaningful support. Men, often due to societal perceptions, avoid talking about their caregiving situation and don’t feel comfortable talking about the emotional and economic challenges of caregiving. However, caregiving is tougher than tough and seeking help is not a sign of weakness but a sign of strength.
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