When journalist Randi Belisomo was thrown into the role of caregiver for her husband, former WBEZ and CLTV reporter Carlos Hernandez Gomez, she learned neither of them were prepared to have end of life conversations. Hernandez Gomez had been diagnosed with colon cancer, and they talked about treatments and how he felt, but they never actually talked about him dying.
After her husband died, she asked his oncologist, “When didn’t you tell me Carlos was dying?” Dr. Mary Mulcahy thought she had. This started what became both of their new missions. Belisomo and Mulcahy co-founded Life Matters Media, to educate others about end of life planning, walk through what is and is not required by law in decision-making, and help people who are just too afraid to talk about death at all.
Belisomo and Mulcahy define the terms and answer listeners’ questions on preparing loved ones for the final days. Here are some interview highlights.
On the immediate aftermath of Hernandez Gomez’s diagnosis
Randi Belisomo: Initially, there’s so many things happening at once. For those folks who knew Carlos, he was the portrait of empathy and transparency and openness, and he would talk about his illness, he would talk about his treatment. He would go to work with a chemo pump. He would go on this show and Chicago Tonight to talk about the importance of colon cancer screenings.
We talked about all of those things, but we didn’t talk about the inevitable. When doctors told us that his cancer was treatable, it wasn’t curable but we could still do several things.
And in the rush of daily life that is dealing with a serious illness, dealing with life, I think a lot of people can relate to this; when something horrible happens, you just walk around astonished that daily life continues. And when you’re trying to get through work and home and manage all of your responsibilities, and get back and forth to treatment, you don’t have time to think about the most important things. That was a failure on my part. …
Serious illness is not just a curve down. There are ups and downs. And when you have good news, you focus on that. And when you have bad news, it’s just let’s try and feel better.
I don’t know if it was a fear to talk about it. Maybe. Probably. But there never seemed an appropriate time. It’s almost like saying something like that, are you giving voice to saying, “Are we giving up?” Instead, we didn’t know what this conversation was really about is changing what we hope for and how we live instead of saying, “Well, you’re not going to make it.” So that’s sort of like a surrender. It seemed like it at the time but it wasn’t.
Dr. Mary Mulcahy: When I first met them, it was very early on in the disease, and we don’t know the course of a disease is going to be. We know averages, we know what often happens, but each person is individual.
When we talked about it, you have to feed people stuff as much as they can handle. So we would talk about what the diagnosis is and what our treatment is now. We would sort of allude to other things that could be down the line, but that’s a lot of somebody to take in. And I know when I’m talking to somebody about this, they’re walking away with hearing 15 percent of what I said. So it’s an ongoing conversation, an ongoing process.
And as I’ve gotten to know Randi better and I’ve heard more about Carlos — I knew Carlos as somebody with colon cancer, I knew him going through that experience — but knowing how strong his faith was and what he probably was thinking, it was a missed opportunity. I think there was a missed opportunity to really have these conversations that could have made a difference for him.
On creating Life Matters Media after Hernandez Gomez’s death
Belisomo: In the months following, you’re living through the unimaginable that you don’t expect to be living through when you’re 28 years old. And you’re trying to figure out what went wrong and what could I have done better. Did we handle this well?
I think we got through. I think there are better ways to handle it. And I sought Mary and I said, nicely, why didn’t you tell me Carlos was dying? And she said, “I thought I did.” And what she really said was he’s eventually going to die. And I said, “Well, he’s always going to eventually die. Everybody is going to eventually die. That is a reality of life on this earth.”
And so we started talking about her barriers of talking about end of life experience, and caregivers’ barriers, and what we would think that Carlos’ barriers would have been, and say, “We’re not doing this really well. How can we do it better?”
So from my background in communication, journalism, etc. and her in medicine, we got together and got some great people together who know a lot more about various issues than certainly I did, and put together an organization to help other people plan better so they can have the quality of life at the end of life that all of us want, but it means different things to different people.
This interview has been edited for brevity and clarity. Click the “play” button to listen to the entire interview.