Marilu Henner, A Truly Fearless Caregiver

Today's Caregiver May/June 2017

Marilu Henner is a five-time Golden-Globe nominated actress who was a caregiver to her husband, Michael Brown, after he was diagnosed with bladder cancer in 2003. She first discovered blood in his urine while they were on vacation two months after they had started dating. She started looking up what the signs and symptoms could mean, and helped him research doctors who could see him. Once he found out he had bladder cancer, she helped him get through it; she would even find humor, fun or creative ways to help lighten the emotional load he would face in day-to-day life. Her husband has now been in remission for more than 13 years.

Marilu sat down with Editor-in-Chief, Gary Barg for a wide ranging discussion about bladder cancer and being a caregiver advocate.

Gary Barg:  I’m thrilled that we’re talking about caregiver advocacy about bladder cancer. Congratulations on Michael’s remission. That’s fantastic. How did you get involved?

Marilu Henner: Yes, thirteen and a half years. It’s great. People are so reluctant to talk about bladder cancer with a loved one so I was thrilled in being a spokesperson for the caregiving side of bladder cancer because I love to share information. I love to share my story. I think that a lot of times the caregiver, they’re sort of given short shrift, and nobody takes care of the caregiver. Also, the caregiver also has a very strong responsibility in terms of how to coax the conversation out of the patient and maybe advocate in front of the doctor, because, as we know, most patients are numb and glazed over when they go to see their doctor. 

So, that’s what I’m doing, and that’s why I get to talk to people like you. Thank you so much for this opportunity to share not only my story but how to find the recent information all on a website and how to advocate for the person you might be taking care of.

Gary Barg: That’s when you become the CEO of caring for your loved one. We host a series of conferences around the country called the Fearless Caregiver Conference. Our main emphasis is just what you’re talking about, communication, honest, open, frank communication is key to life and death for caring for a loved one.

Marilu Henner: Absolutely. You have to use humor and sensitivity. You have to be fearless, of course. You have to not let doctors talk you out of asking questions or intimidate you so that you don’t get your questions answered, because a lot of times we’re so afraid to open up our mouths. Trust me. I am not from the keep quiet and they’ll let me live school. I want to make noise if noise needs to be made. You don’t even have to do it in an obnoxious way. You just have to do it in a very loving but firm way, especially if you have a reluctant partner who doesn’t want to make waves, or feels embarrassed. Most of the times, I guess because bladder cancer hits men three to four times more than it hits women, they’re the ones keeping their mouths shut and afraid to talk to their partner about it.

Gary Barg: I was reading the Genentech national survey of 1,000 adults. One thing that just stood out to me is that 54 percent of men and 35 percent of women say it would be difficult to discuss blood in the urine. If you can’t discuss that, what are you going to discuss with their significant other?

Marilu Henner: Because it is so personal. People are not used to talking about bathroom habits. I mean I had my baby on national television, so I have no secrets. In my first health book, I had an entire chapter called, What’s the Poop? That was devoted to your digestive tract. So, I have no problem having those difficult conversations with people. It’s part of nature. It’s part of who we all are. 

So, I keep saying to people, the caregiver has to be the brave one. The patient is so frightened, and they’re so stuck. Their whole life is flashing in front of them. They’re just so afraid of not being who they were and who they want to become. They’re afraid of people at work finding out. They’re afraid of being labeled as a patient, or they feel like they’re going to be alone and in the dark and not have enough information. That’s why somebody in your corner, that’s brave enough to say, “Hey, I’ll go with you,” and cares enough about you to say, “I’ll go with you. I’ll ask the questions. You can talk to me. There’s nothing too TMI, nothing that’s out of the realm of possibilities for us to be able to discuss.” So, you’ve got to find that person. That’s the caregiver.

The caregiver, of course, has to take care of themselves. I keep saying that one of the things I learned being a caregiver is that you have to dress warm, because hospitals and doctor’s offices are always freezing cold. I learned to multi-task my health by not only layering up and making sure I was dressed warm and wore comfortable shoes, but I would also go up and down the staircases, or I’d walk around the block, or around the hospital, and I learned how to hydrate and bring healthy snacks. You just have to take care of yourself too. I think a lot of times caregivers forget to do that.

Gary Barg: Knowing that you’re not going to just take somebody’s advice. That you’re going to question, question, question. What guidance would you offer other caregivers who just walked into this situation?

Marilu Henner: I would first of all analyze why you’re in fear. What’s your earlier experience that put you in the fearful position of not asking questions? Maybe it was a mean teacher at school, then get over it. I think if you’re prepared, and you’re coming off very pedantic or like a shrew or something, that’s not going to get the job done. Then, if you’re not only talking to the patient with a certain kindness and sensitivity in your voice, but also to the doctor having done the homework. There’s a discussion guide on this wonderful website, Bladder Cancer Advocacy Network. You can hear more of my story with Michael as well as a discussion guide to how to bring up some of these difficult questions.

Gary Barg: If you only had one moment to tell a caregiver the single most important piece of wisdom you’d like to share with that family caregiver, what would that be?

Marilu Henner: I would say be brave. Be brave. Be fearless.  Caregivers are the brave ones who have the snowplow that everybody else gets to ski behind. So, I don’t mind being the snowplow starting with bcan.org and my conversation with you right now.