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HealthChangers Podcast: A Mini-Series on The New Reality of Caregiving During the Pandemic Part IV

Jennifer Danielson and her Grandma June

This HealthChangers episode is part of a special mini-series highlighting our nation's caregivers in partnership with Archangels, a national movement recognizing and honoring caregivers. Listen to Part I, Part II and Part III of our HealthChangers series.

Until recently there were 44 million caregivers in the United States. Now in the midst of a global pandemic, we are all caregivers. Caregivers include medical teams, grocery workers, truck drivers, and others working to find balance, trying to perform at work while all at the same time, not jeopardizing the care provided to their loved ones. In this special HealthChangers episode, Cambia’s Senior Vice President of Public Affairs and Policy Jennifer Danielson shares her personal story of caregiving in a post-COVID world with Peggy Maguire, leader of the Cambia Health Foundation.

Peggy Maguire (PM): Welcome, Jennifer. Thank you for being part of this.

Jennifer Danielson (JD): Thanks, Peggy. Thanks for having me.

PM: I'd love for you just to start out by telling us a little bit about your job. I know you have a big and important job at Cambia, but could you please describe it for our listeners

JD: You bet. One of my favorite parts of my job is how long you and I have been able to work together on so many different things over the years. It's fun to talk with you today and talk a little bit about just our shared perspective on things. For my job itself, I oversee public affairs and policy for Cambia. That means that we work to educate and engage stakeholders externally – elected officials, legislators, trade associations, other community leaders, regulators on the topic of health care transformation and trying to work to make health care work better than it does today, cost less and get more afforded.

PM: Thanks. You're quite humble in describing your role because I know, especially in the last few months, it's been incredibly busy and thinking about how to help our company navigate COVID on behalf of our customers. You've really been in there in the trenches, working hard with a variety of folks to make health care better for people and families. As I said at the beginning, it's a really big job and you do it very well.

I'm a big believer that there's more good than there is bad, and that when you actually strip away labels and the contention, there is a desire to find that support for each other and that humanity at the end of the day.

JD: Thanks for that, Peggy. When COVID hit and our team really came to understand the level of work and engagement that was on the table for us, along with governors, clinical partners and regulators, both at the state and the federal level, in addition to just the reality of what people are dealing with on a day by day basis, our team lives for times like this. Although we could take a break from the intensity of things with COVID, but these are the times when it really matters. Data matters, information matters and good thinkers for creative solutions to tough problems and the ability to cut through the noise a little bit and get at some of those core questions. At the end of the day, that's truly the fun and meaningful work. It’s a big part of the reason why a lot of the people on my team care so deeply about having the jobs that they do.

PM: What other roles do you play outside of work?

JD: I did an interview with a local business magazine a long time ago, and I got a little bit of attention from a quote that I included in there about just having a big old life in terms of the scope of the recognition of what so many of us do deal with in the totality of who we are as individuals and the lives that we lead outside of the work. I'm a mom, I'm a stepmom, I'm a daughter. Until a few months ago, I still had a living grandmother as well, I try to be a good neighbor. Although, I feel like that's one of the areas that takes the backseat sometimes, try and be a good friend some of the time. I'm a wife, an aunt and a sibling. Like I said, which is true for just so many people, it's a big old life with lots of different facets to it.

Data matters, information matters and good thinkers for creative solutions to tough problems and the ability to cut through the noise a little bit and get at some of those core questions.

PM: That is a big old life and a lot of expectations for you and on you. I know we've talked about your grandmother before, I'm sorry that she's passed. I know that you were very close to her. I'd love to have you tell us a little bit about her and what made her so special.

JD: Thanks, Peggy. Like I said when we started, you and I have been friends for a long time, and you know what an important person my Grandma June was in my life. It was such a blessing to just have her, have her perspective, have her humor in all our lives. I come from a long line and hardy stock of women who lived to ripe old ages and pioneers that crossed the states to settle in Utah, a grandfather that was English and emigrated to Canada and eventually to Utah.

This grandmother of mine, Grandma June, was 99 when she passed away in February. She was just a few, short months away from being a hundred. To give you a little bit of an aspect into her character, for decades, she refused to get new hearing aids because she kept saying that she didn't need them. No need to spend money on something like that, because she was sure she was going to pass away before she got the benefit of them. I lived with her while I was in college and going through law school as well.

Politics was her spectator sport. She read the newspaper religiously. She really mourned the death of print media and the news that she used to be able to get from paper subscriptions. Teaching her how to read publications from around the world on the Kindle or a computer just was not going to work for her. She lamented the demise of the card catalog system at the library. That interest in politics that my dad, my aunts and others have had, that was part of a growing up experience for me. It really led to that understanding of that deep intersection between politics, and policy and health care as well.

PM: That's so interesting. Especially as you were living with her, as you were forming your own legal career and absorbing all of that, very interesting and explains a lot about why you're doing what you're doing now. I love that.

JD: Thank you. She was a Democrat through and through, and one time I brought home a Bush bumper sticker and just folded down the corners of the paper backing on the back of the sticker and stuck it to her fridge. She didn't talk to me for about 48 hours because she thought that I had attached the entire thing to her fridge.

PM: That is so funny. Well, she sounds like a remarkable woman, and I'm glad that you had her in your life for as long as you did.

JD: Yes. Thank you.

PM: Now, speaking of your big old life, you talked about a lot of the roles that you play. I have to ask you, do you identify yourself as a caregiver?

JD: When you and I started talking about having this conversation, I really had to stop and think about that because I hadn't really categorized myself as a caregiver before, but of course I am. Just like everyone is in so many different respects. That experience with my grandmother, as she really started to decline in that last year of her life, she experienced so many different health care issues. She had a fall and broke her hip. She had pneumonia, she had heart failure and that's ultimately what she ended up passing away from. There were so many questions along the way about good doctors, good resources, ways to meet her desire to remain at home as long as she could. Just so much complexity that my parents were trying to deal with, that it became a group of us working to find those solutions, meet needs, get her to the appointments and figure out all of the other in-between stuff too.

…I think that when we actually just step back and take a look at the stuff that we just do in our lives on a day-to-day basis, it's really pretty astounding how much caregiving, I think that we all ultimately do.

And that wasn't just us alone, siblings and other family members played a big part as well. I think that that caregiving extends beyond just people who are in those health care moments in their lives. There’s that day to day help for people like my own parents who are in their mid-70s and are homebound due to COVID. The work that we want to do, because we love them so much and want to help them feel not so lonely, and to make sure that they're getting the groceries they need and taking care of stuff at the house, or banking related issues or whatever the case might be.

Then, of course that stems to things related to kids as well, for how drastically their lives have changed and how much minding online school actually takes. I hadn't thought of myself as a caregiver before, but I think that when we actually just step back and take a look at the stuff that we just do in our lives on a day-to-day basis, it's really pretty astounding how much caregiving we all ultimately do. 

PM: As I heard you tell your story, I jotted down on my notepad, “caring across multiple generations.” You're not caring for one person, you're caring for multiple people across multiple generations, including your children, your spouse, your parents, and your grandmother. That's pretty remarkable all while holding down this big job. Let me ask you specifically about the last few months, how has the COVID-19 pandemic impacted you and your caregiver responsibilities, any one of those caregiver responsibilities?

JD: It's both simplified things just in terms of the structure that has to become necessary and how you go about things, but it's also complicated other things terms of the new things that I've got to learn. Like I said, the process of learning online school and just keeping a 13-year-old young man on track. And Peggy, I'm sure that you have the same experience. I know, by talking to so many other people that there are just so many people who are feeling the added weight of that burden in feeling just a little bit more isolated in terms of how we go about dealing with all of this stuff.

PM: And there's a fair amount of anxiety, I would say, about interacting with others. In terms of, as the cases continue to spread and surge, how do you think about balancing the things we need to do to reduce the spread of the virus against things that we need to do to help people feel less isolated and to help with mental health issues? It can be a very challenging time for people who are giving care and people who are receiving care.

It's been an emotional roller coaster on the home front. I've been very grateful to have that silver lining… just to be able to be home every single night to give [my daughter] …a hug.

JD: I think that's true. I think that when you have a collective understanding of what the protection measures are, it makes it easier to deal with it, but then you're just dealing with that human element of weariness of it all as well. It's a lot for everyone to deal with.

PM: Yeah, and we’ve been working from home for several months now. I think, when we first started working from home in early March, I don't think any of us anticipated, we'd still be working from home as we approach the holidays. How has working from home changed your life?

JD: Prior to COVID, I really did travel quite extensively. I think this is just my own natural viewpoint with things. There are generally pros and cons to anything based on the lens that you put on it. A pro for me, for COVID is that prior to COVID, I really traveled quite a bit for work. Now, that is completely shut down. Other than actually seeing my colleagues and friends and other benefits that you get from working with people on a face-to-face basis, it's actually given me quite a bit more time at home than I've really ever had in the entirety of my working career. I think that I'm actually working more hours than I did before, but I'm spending so much less time traveling that it's easier to find just those snippets of time to just fit family stuff in between the gaps here and there.

For me personally, I've got two kids at home with me. I've got three older step kids that don't live with us and are at more advanced stages of their own lives, but my two kiddos that live with us are 13 and 17. For my daughter, the 17-year-old, this is her senior year of high school. With the way last year ended, and this year is turning out to be, it's been an emotional roller coaster on the home front. I've been very grateful to have that silver lining blessing for us, just to be able to be home every single night to give the poor girl a hug.

Give yourself that recognition for playing that caregiver role and take that mental moment to reconnect to that underlying reason for the why.

PM: That is great. When you think about the challenges you faced and the bright spots you've experienced, do you have any advice for people who might be listening and are experiencing similar situations? Like you, they may not identify themselves as caregivers, but they're definitely providing and receiving care. What advice do you have for people that are navigating this pandemic, working and trying to maintain their relationships with loved ones?

JD: A few things come to mind and the first probably goes back to what you and I were talking about before, just taking that moment to pause, recognize what you are doing and give yourself that moment to feel that recognition for yourself, even if you don't get it from other people. Give yourself that recognition for playing that caregiver role and take that mental moment to reconnect to that underlying reason for the why. Ultimately, we do these things because we love these people. There probably is, in some of those tough days, an element of duty that keeps us going.

I spoke at my grandmother's funeral in February and a quote that I used from a religious leader of our faith, said something powerful. It related to this idea of, in order to take the sting out of death, the pain out of death, you have to take the love out of life. Death hurts because we love people and we do these tremendously burdensome and oftentimes tough things because we love people. That says a whole heck of a lot. I think about us and the why behind it, that I think more often than not, we need to all just pause and acknowledge and be grateful for.

PM: Yeah, well, that fills me with hope. I know we're not looking at each other right now, but I'm about to cry, because that was so beautifully stated. It is all about love and caring and that's what the world needs right now.

Death hurts because we love people and we do these tremendously burdensome and oftentimes tough things because we love people. That says a whole heck of a lot.

JD: I think that when we take off those masks, not to take our discussion here to a different place, but we as a country, we as a global community have real issues that we've got to deal with. I'm a big believer that there's more good than there is bad, and that when you actually strip away labels and the contention, there is a desire to find that support for each other and that humanity at the end of the day.

PM: Thank you. Very well said. Thank you for your time today. I appreciate learning more about your journey as a caregiver and your advice about remembering our why and our sense of purpose.

JD: Thank you, Peggy. It's nice to have to do just what I said in terms of the advice, just have a minute to pause and think about that too.

PM: All right. Thank you and take care.

JD: Thanks, Peggy.

Leslie Constans (LC): Before we wrap up this special episode on caregiving in a COVID-10 world, we asked Alex Drane, the co-founder of Archangels, a national movement to recognize and honor caregivers, to share a little reflection on what she heard. I invite you to listen. 

Alex Drane (AD):
I just have to say, Peggy, you nailed it when you shared how this made you feel just then at the end, I am a big old plus one on that. Jennifer, you really do have a big old life. What a gift that was for your Grandma June, I feel like I know her. I wish I did know her. What a gift it is for all of us. I think the things that really stood out for me, one, how Jennifer was a caregiver to all of us in sharing all those stories that she just did and letting us into her circle, and with such a warm and contagious laugh. It was such a joy listening to you both. I think, Jennifer, you embody what we call, look, love, lift, I think for yourself, but then also in the advice you gave at the end.

Look, love, lift is this term we use for look for caregivers because they're everywhere and they don't look like what we expect. You got to take them into love on them and recognize that love that they're giving. Then you've got to give them a lift. From a look perspective, it was so beautiful when you shared that you yourself didn't think of yourself as a caregiver when Peggy asked you to do this. That's so true, there are now caregivers everywhere. One in four caregivers are millennials, one in five are Gen Z and 45% are men. We know that 61% of the population right now says, "Yes," when asked, "Are you caring for, or worrying over the health of a loved one, neighbor or a family member or friend?" You nailed it.

You described every single aspect, every single one of those folks, when you were walking through your stories. In the situation with your grandma, how many of you pulled together to be supporting her and how with COVID and the social distancing and all the appropriate requirements we're all taking to keep your parents safe, my parents safe, that we're all stepping in as caregivers in different ways.

From a love perspective, you actually used the term. I took notes on everything you said, that you just really had not thought of yourself as a caregiver when you took back and you took a look at all the things that we're doing it in our lives, it's pretty astounding how much caregiving that people are doing on a day-to-day basis and that's love, right? That's that love component. Then the lift, I love this notion. You nailed this as well. Lifts are examples of doing groceries, helping someone with their banking, taking care of the house, whatever it can be that we can be doing to love on the people that are caregivers, to love on the folks that they're caring on. Look, love, lift.

You also talked so beautifully about this notion of when you give a lift, you get a lift, that's what we always say. So look, love, lift, and when you give a lift, you get a lift. The fact that your team, you mentioned how your team gets fired up really, how in this time that is so hard, that they're doubling down on doing more. We have such empathy and gratitude to your team for doing that. I love that you also nailed and I know this is true for Cambia employees across the board, that in supporting others, it makes them feel better. In giving those lifts to everybody that you guys are caring for, your coworkers, your loved ones, your members for Cambia, you yourselves are getting lifts out of that.

Thank you for talking about the benefit of COVID, because we know that there is so much about it that's really hard. There's also a lot of it that's beautiful, which you talked about it. I've got a 14-year-old and a 15-year-old and this is hard. This is hard for all generations. This is unprecedentedly challenging, and the impact of behavioral health is real. We know that one in three unpaid caregivers contemplated suicide in the month of June. This is the study that we did that got published by the CDC. We know that age is not protective. The loneliness, the isolation, then the lack of experience and having resiliency. Let's not believe that if you get older, it's that much better, a full 42% of boomers are also feeling anxiety and depression.

Thank you for calling that component out so we can all be figuring out what to do and which gets me to just the opportunity for all of us. I think you're in your role and from a policy perspective, from a public affairs perspective, I'm so glad that you're knitting all this together. It's fun to think of how much you inherited from Grandma June, as she's going to be now in my head, that we have to break out of these silos. When you think about the fluidity of the caregiver role, so many caregivers right now, are needing to quit their jobs or reduce their hours because they can't possibly figure it all out. I think from what I've seen and what you guys are doing, you're trying to address that across all these silos, not just for your employees but also for your members, looking at what employers can be doing, what health systems can be doing and what can local communities be doing? What can the state and the federal government be doing?

We can really meet these caregivers where they are, across these different spectrums, as they go through these stages. We can help them stay employed, help them stay healthy, help support them in this extraordinary work that they're doing. Jennifer, I just want to say you not only have quite possibly one of the coolest grandmothers ever, sending big love up to you, June, I hope you're hearing this wherever you are in the sky. I think you really do have a big old life, and I'm so grateful to you, to Peggy and to all of Cambia that you are using all that power for good. Thank you for letting me be a part of this, it was extraordinary to listen to. I wish I could make your laugh my ringtone.
 

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