Allison Ramiller
Gary Barg: Allison, can you tell me about your individual role with Empowered Health?
Allison Ramiller: I’ve been with Empowered Health for a year and a half. I’m an ambassador representing the caregiver experience, and they have a whole panel of different ambassadors that represent a range of experiences with the cancer journey. I help bring some of the perspective from what my family went through to some of their work.
Gary Barg: During your mom’s cancer, what did you see as your role, and how did that role evolve over time?
My mom was diagnosed with ovarian cancer about four or five years ago. There was a lot of optimism that it could be effectively treated. Her specific subtype was responsive to the chemotherapeutic drugs that exist. So initially, my role was just being a support when my mom was going through challenging chemotherapy treatments. We learned so much about navigating the clinical trial system, about different health care systems, cancer care centers, biomarkers, genetic testing—it was incredible the amount that we learned. My role evolved, as it often does as you move through life, your roles of responsibility start to flip as the parent gets older. I experienced an accelerated version of that.
Finally, we had some success for a while with targeted therapies, but eventually her cancer was so aggressive, we unfortunately lost her. Then my role—and I was the least well-equipped for this—was the grieving part. It was really hard, but I definitely went through an evolution. My family unit changed a lot. There were very hard days and then really empowering days. In reflecting back, that’s the lesson that I’m carrying forward, but yeah, it was an extremely difficult, but incredible thing for my family, and we forged a tremendous partnership together.
Gary Barg: There’s so much to your comments that is so important for family caregivers. One is that we do become the CEOs of caring for our loved one, through that metaphorical phone call in the middle of the night—the tests have come back, Mom’s wandering, there’s been an accident—and now you walk through this looking glass of people yelling acronyms at you and asking your opinion about things you never even thought of before, and you take on that role. You took on that role of being empowered, But there is also the question of what happens next? How does it change the family dynamics? How does it change you? So, thank you for this conversation. I appreciate it.
Allison Ramiller: Thank you.
Gary Barg: Angela, What was your experience with caregivers and what was your expectation?
Angela Dunbar: I’m the opposite as I think of you, Gary and Allison, because you all were both such amazing caregivers to your families. I was on the other side. I was diagnosed with breast cancer, went through treatment, a double mastectomy and reconstruction. I was the one that had been used to being the caregiver. Especially as mom and wife, you just take care of everyone. So, it was hard for me to make that switch and to accept care. It just took me a minute to be humble, to accept the help, but I got there with candid help from my husband and others. It filled me with such grace and love to see people from al
Angela Dunbar
l walks of my life who showed up in a variety of ways to offer support, empowerment and physical care. I had two teenage boys. One was in college; one was in high school. I’ve got a little girl who’s nine years old now. To see how they each chose to be a caregiver to me was a beautiful thing.
Gary Barg: That’s a great point. And I’m so glad you brought up the role that the care recipient plays. In so many cases, it’s empowering—there’s the word again—for you to be part of it as opposed to just feel like well, now everyone’s going to do for you. Because it is a partnership. The other thing I like that you mentioned is then you learn to step back and be cared for and to be humble—another great word. Angela. What barriers did you find to this care, and how did you overcome them?
Angela Dunbar: I had some different barriers just because I went through my treatment and surgery during COVID. I wasn’t able to have my husband attend my appointments. He wasn’t able to be in the hospital when I had my surgery or join me in treatment. My husband was really good at helping me prepare for my appointments the day before. He would ask me if I had my questions written down or if I wanted to talk about this option or this option. I remember at one of my first appointments I went to without him, I had my notes right there with my questions and I walked out without pulling them out of my purse. It’s so overwhelming and when you don’t have that caregiver in the room with you who is laser focused on you, things like that can happen. I later had to schedule another appointment where I walked in with the notes in my hand.
Ironically, I was the campaign director of Empowered Health, so it was one of those times where you just had to lean into what you know. I leaned into the resources of Empowered Health. I leaned into the benefits of accepting care from your loved ones and in making empowered decisions together. That was key for me, is that I felt as though I wasn’t being told what to do and I had a say in what was going to happen with me.
Gary Barg: Allison, what were some of your barriers, and how did you break through them?
Allison Ramiller: Similar to Angela’s experience, some of my barriers were around agency and feeling empowered in the doctor’s office. There’s that power differential, and things leave your mind, even if you come from a place of knowing that it’s okay to ask questions. I wish earlier on I had known to ask about things like “if she has that treatment, will that preclude us from accessing this other treatment down the line?” Another one is how siloed our healthcare system is, especially if you move off standard treatments into more experimental therapies. None of your information is portable from one treatment health care center to another. So, my dad and I did a lot of tag teaming. My mom had a specific biomarker for her cancer that dad started tracking over time. We’d integrate the values from different cancer centers and had a huge picture of it over time.
Now that it’s a requirement that you see your doctor’s notes in your medical record there’s better sharing of the records. No doctor, however dedicated they are, is going to care as much about my mom as her family. But combining what the family brings—their own expertise, their knowledge of the patient’s history, the incredible commitment they have—with what the doctor and the care team bring, is powerful. This shared treatment decision-making is something I’m so passionate about. I’m really excited that places like Empowered Health are educating and promoting that message more widely.
Angela Dunbar: I was really being intimidated by my providers. Because you go in, and you sit on the table, and sometimes you’re in the gown, and your feet are dangling off the table, and you feel like a little girl. And then here they come with their white coats and their clipboard and the entourage of their team behind them. It made me feel like a little girl and insecure. I had a friend who said, “Don’t sit on the table, Angela. Sit in the chair with your feet on the ground and see if that helps.” And that little change just made all the difference in the world to me. It just changed my attitude, it changed my feelings of empowerment, and it was just a little tweak that really made a big difference for me.
Gary Barg: What is the most important piece of advice you’d like to share with family caregivers with a loved one in crisis?
Allison Ramiller: For my family, we tended to do the everything is fine approach all the time. I think we had some unacknowledged distress and trauma that was happening that I didn’t get to address until after my mom passed away. I didn’t always know how to be there for her, because I was scared that I would uncork everything that she was holding in. I wish I had given her permission to talk more about how it was affecting her emotionally. If I’d given her that space, maybe it would have helped her and helped me a lot.
There are so many things that caregivers have to juggle as part of their role. You have family, you have kids, it can be hard to ask for help. Angela had a network of folks that came in and offered, but I think it can be hard for people to know what to offer. It’s important to have a list of things ready that you can hand off. If someone says “I’m here to help but I don’t know how to help you." Just knowing the things that you can delegate helps that two-way support.
Angela Dunbar: I agree a hundred percent with Allison. I remember specifically it wasn’t long after one of my last surgeries and my oldest son came home from college to check on me. I had such pressure to just act like there was nothing wrong. He and my husband were going to take the dog to the dog park, and I was like oh, I want to go. I am so proud of my husband that he pulled me aside and he said it’s okay, Angela. It’s okay. We don’t expect you to be a hundred percent. We want you to get better. Rest. Relax. Let me do this for you. I needed that permission for him to say it was okay.
Gary Barg: I think what CDC Foundation’s Empowered Health is doing, is the support that caregivers and patients need. So thank you for your time, thank you for all you do, and thank you for spending a few minutes with me.
Angela Dunbar: Well, thank you so much, Gary. And just if anyone is interested in the resources, you can find them at empoweredhealth.org. There’s something I think for everyone. Short videos, fact sheets, audio podcasts, and it’s for patients, caregivers, providers. There’s a prevention aspect. So I hope it could be helpful and beneficial to someone.