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 not jeopardizing the care provided to their loved ones.
In this episode of HealthChangers, we spoke with two people who are working to provide caregivers the support and recognition they need to perform well amid some of the most challenging conditions they’ll ever face. Peggy Maguire leads Cambia’s companywide palliative care and caregiver strategy, and Alex Drane is the co-founder of Archangels, a national movement recognizing and honoring caregivers.
If you have a caregiving story to share or want to thank a caregiver through Archangels’ #LookLoveLift social media campaign, tag us on social media or send us message. We’d love to include your story or thanks in an upcoming HealthChangers podcast.
Leslie Constans (LC): Alex, welcome to the show. And the first question I wanted to start with is, tell us a little bit more about Archangels, your mission, and the focus on caregivers. Why caregivers?
Alex Drane (AD): We focused on caregivers because, in our mind, they really are the epicenter of changing health, and therefore life across our nation. And I think if that was true before, it is so much truer now. And so, the company that we started before, was a company called Eliza. Over the course of her life they did over a billion interactions and really learned from people that while the health care system might think that diabetes or asthma or cardiovascular disease are the biggest diseases in the U.S actually from the standpoint of an individual out in the wild living their life. It's really things like caregiver stress, financial stress, relationship stress and workplace stress.
And if you define caregiver, as anyone caring for someone that they love and being and feeling responsible for the health of that person. And we were focused originally on the unpaid caregiver. If that was 44 million people three weeks ago, how do you expand that to what it is once you define a caregiver as being responsible for anyone who's at risk?
“The unpaid caregiver, those folks are massive. And then the paid caregiver is, we're realizing it's any first line worker.”
And that just very quickly morphed from being somebody who had a condition that you knew about and you were treating to anyone was at risk. And this is even expanding over the last couple of days from anybody who's... We thought was over 60 or 70 with a preexisting condition and now we know, "Oh my gosh. No. It could be somebody who's 30. It could be somebody who's 20."
The unpaid caregiver, those folks are massive. And then the paid caregiver is, we're realizing it's any first line worker, which can be first line responders of any type, which includes, cashiers and stockers and logistics managers, people who help keep food on the shelves. I think that the focus on that overall on caregivers as this vital, vital component. It really is pretty much everybody now across the country.
LC: Right. And I know this is a fast-moving situation. You mentioned just three weeks ago, 44 million caregivers in the U.S. How has the COVID-19 pandemic affected the culture of caregiving and you mentioned grocery workers and health care workers and your neighbors? What are you seeing as we're all living in this stay-at-home season? By the way, you're at home, right?
AD: Yes, I am at home.
I'm calling from Beverly, Massachusetts and from the warmth and safety of my house where I'm lucky enough to have a home office and I sit here and thinking about my family members in Italy. I have tons of cousins there. One of my cousin’s married this beautiful woman, they're both teachers. And in their apartment with them, they're small apartment, they have three children under five. And they are trying to do the online teaching at the same time. And all of us across the U.S we have examples like that of people who are struggling through what does it mean to work from home for those of us who are lucky enough to get to do that.
And then for the rest, what is it to feel safe in a world that's especially lacking PPE right now. I'm very lucky in Beverly, I'm safe and I'm really sitting here feeling like many people do. I think it's actually the origin of this notion that we ran by you guys, that you've been so gorgeous to support a feeling of helplessness, right?
“How you can create moments of hope and love and things that people can feel good about in a time when there's a lot to feel not so good about.”
What can we do to help in a time where there is so much need and we're stuck at home? And this idea of how you can create moments of hope and love and things that people can feel good about in a time when there's a lot to feel not so good about.
I know you love music. I love music. And there are a lot of beautiful songs out there that recognize the light that can come from the dark. And there was one I was listening to right before our call by Leonard Cohen called Anthem and it has this line, "Ring the bells that still can ring. Forget your perfect offering. There's a crack in everything," and that's how the light gets in. And I think this is that moment for caregiving. I think this is going to be a light for that. For generations, caregivers have really been the unsung heroes of our country. They've been invisible even to themselves. Like 50% wouldn't even have self-identified as a caregiver, let alone being recognized and their need to be supported. Being recognized by most employers and most health plans outside of your organization.
And I think to change culture, you need to change conversations. And not only was no one talking about caregivers, there was really even shame around it. And one of my favorite examples is, when I was a mama to two little babies, I could go to work and the person next to me would say, "Oh Alex. You have spit up all down your back," and everyone in the room would laugh and, "That's so funny. Alex has spit up ha, ha," because babies are cute and they're hopeful and they're filled with optimism, right? Because baby's going to grow up. It's very different. Up until recently you couldn't go to work and say you were late because your mother with Alzheimer's had gotten out of the house and that you'd spent the night looking for her.
“For generations, caregivers have really been the unsung heroes of our country. They've been invisible even to themselves.”
I think this notion of this moment of being unbelievably important is if this idea of changing culture is changing conversation and that really is what Archangels has been all about. Like getting that conversation started so caregivers could feel seen. But you don't even need a conversation starter right now because that is happening everywhere. We were all stressed about, "Oh my God. How do I care for my mom who lives in my house in my town? But I can't physically get to her because it's across the country I really can't get to her." This is a moment to forever change the culture of how caregivers are seen, how they're supported, how they're honored and what we can do for them. And that in and of itself was a beautiful thing and I think that is some light we can take from this dark.
LC: Thank you for that. I want to turn to you Peggy [Maguire], first of all maybe you can let us know where you are calling in from. And then I wanted to follow up with hearing a little bit more about your work and focus on caregivers. And why you took the Look.Love.Lift Pledge and what does this mean to you?
Peggy Maguire (PM): Well, thank you so much Leslie and great to be on the phone with you both. I am on the opposite side of the country from where Alex is. I am in my home office in Portland, Oregon. And like Alex, I feel incredibly blessed to have a home and to be sitting in a room that has sunny yellow walls and looks out onto beautiful green trees in my backyard and in my neighborhood. And it's really nice to be with you today and to be sitting in this space.
So much of what Alex said just resonated really strongly with me. This idea that culture change takes time and we have been working at this for a long time, but this pandemic has really sped up a sense of urgency and is changing culture in a very positive way. I am seeing caregivers everywhere. I think we're recognizing that being a caregiver is part of being a human being. And as Rosalynn Carter said, and Alex, you are the first one who shared this quote with me. There are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.
“To change culture, you need to change conversations. And not only was no one talking about caregivers, there was really even shame around it.”
Caregiving is really and truly something that impacts all of us. And it's personal, it's incredibly personal. I realized that my first experience as a caregiver was when I was 23 years old and I drove my dad to his chemotherapy appointments and I fed him cantaloupe because for some reason he had a craving for it and I helped him walk from his bedroom to the bathroom. I didn't realize it at that time, but I was a caregiver. In my professional life, as you both know, I've long advocated for palliative care. I think it's probably one of the most underrated and essential components of our health care system. The Cambia Health Foundation has invested more than $40 million to advance palliative care access, awareness and quality.
And I think you both know this, but I'll say this for other listeners. Palliative care is a specialty type of medicine that's focused on providing relief from the symptoms and stress of serious illness. And the goal is to improve the quality of life for both the patient and the family. It's my work in palliative care and my exposure to palliative care that helped me understand that serious illness is not an issue that only impacts the person receiving the diagnosis, but it impacts the people who love and care from them as well. Now, my understanding of caregiving has expanded beyond those caring for someone with serious illness.
“This pandemic has really sped up a sense of urgency and is changing culture in a very positive way. I am seeing caregivers everywhere.”
But that's where my first exposure came and my first understanding about the need to take care of caregivers because I would see them in relationship to the person that they loved. And often caregivers would neglect their own needs in order to be there for someone that they loved, and they didn't think about it as caregiving. They just thought this is what you do. Our regional health plans introduced, I think back in 2014, introduced a comprehensive palliative care benefit that includes caregiver support. And when we designed our program, we really put the member and their caregiver at the center of the design of principle. Our benefit covers in home health care and psychosocial support including family and marriage counseling.
“There are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”
And we have a team of specialized nurse case managers who are available to our members but also to their caregivers. And that's true regardless of whether their caregiver is insured by us. Our case management team tells me that 80% of the calls that they receive are from the caregiver, not the person with serious illness.
We also noticed that as an employer Cambia, I know you know this, but Cambia employs about 5,000 people and we know that issues of serious illness care and caregiving really impact our employees as well. So we created a special employee resource group that meets monthly to support each other and to share stories and life hacks, if you will, and best practices. We've done a lot to support caregivers.
But the reason I took the pledge is really beautiful. It's beautiful in its simplicity. The pledge is to look for caregivers wherever you are, to see that... So to see them. That's the first part of it. The second part is to recognize the love that they're giving, what they're doing for others. And then the third part is to lift them up in some way. So it's a pledge to look, love, lift. Look for caregivers wherever you are, recognize the love that they're giving and do something to lift them up. It could be as simple as getting them a cup of coffee from their favorite barista, or it could be a smile. It could be sending a note. It could be giving them a bouquet of flowers. It's really something to say what... It could be pointing them to resources that they need to get through the day.
“It's my work in palliative care and my exposure to palliative care that helped me understand that serious illness is not an issue that only impacts the person receiving the diagnosis, but it impacts the people who love and care from them as well.”
It really is that look, love, lift. The pledge is to recognize and support caregivers. And the reason that I took it is, well, one, based on my background, I told you we've done a lot, but I also recognize that there was much more to be done. That we need to bring caregivers out of the shadows and into the spotlight. I think we really need to let people know they're not alone and that they're worthy of love and care for themselves, especially because of all the love that they give. I've just been really inspired by this movement and this culture change that Alex and her team are pioneering.
“The pledge is to recognize and support caregivers…to bring caregivers out of the shadows and into the spotlight.”
LC: Thank you for sharing that Peggy. Alex, can you share more?
AD: I think one of the biggest lifting examples I can give, it's so heartwarming to hear you describe it Peggy and thank you guys so much for supporting it the way that you have. You are beautiful in the way you talk about it in the way that you live it. But you talked about the difference of caregivers score from 2014 and you talked about family and marriage counseling being part of it. And I don't think that's something that most people with a behavioral health component and aspect of being a caregiver, I don't think most people have really paid attention to it. And if there was ever a moment that we needed to pay attention to that it is right now.
I think this notion of a lift, a lift is anything from all the examples that Peggy just gave starting with, she sees someone and thanks them, love on them as you can, fills their fridge-- fill the fridge of a first responder, connect somebody with someone who's been through something similar. Connect them with the resources that completely kicked out. Like the ones that Cambia have listed on their website. But it's also about keeping our eyes out for other secondary effects and help people with those as well. Because they will be quieter, but they will be deadly and we need to do everything we can to be supporting the reality of the devastation that we're going to feel in a lot of ways across the country.
And you are first responders. You're first responders in every single way and I'm super grateful to you for that.
“We've got to forgive ourselves as we move through the process of coping, so that we can get to the beauty and get to the hope and get to the lifting up of others.”
LC: Thank you. I wanted to ask you both. What are some other ways, especially as our definition of caregiving has expanded and many of us are now staying at home and caring for families and neighbors, but also people are going out and putting their lives on the line, the essential workers, the delivery drivers, the health care professionals. How can we continue to show them our support and appreciation for what they're doing during this really incredibly challenging time?
PM: My sister is a nurse and her husband is working to convert buildings in the Chicago area into temporary hospitals or care centers. They are both deemed essential workers and they have two sons and they're also caring for his parents. Think about that and I know their story is not unique, but I can't tell you how much I appreciate them and the love they're putting out into the world. And I think it's up to all of us to look around and see people like them and other essential workers like them through this campaign. For me, this is an opportunity to thank doctors, nurses, social workers, and other people who are on the front lines of this crisis. And say, thank you, thank you for what you're doing on an individual level, but also on a societal level.
I think the best thing we can do for people right now is to stay home and reduce the spread of the disease. But while we're staying at home, this campaign offers a sense of hope and optimism and it gives us a sense of connection and community during a time of isolation. I am just blabbering now because I am so excited about this, but I think we as a community of people who care can connect with each other and demonstrate our appreciation for those who are caring for others.
AD: I love that. Peggy. I think one of the points you're making that I think is so important for all of us, it is something that we can do. There are so many things we cannot do right now, but this is something that we can do. And you used the language, see them. And Peggy, you and I had been in a lot of meetings over the years when we talked about helping caregivers to self-identify. And over the last six months we've all evolved our language. It's not on the caregiver to have to self-identify. It's on us changing the culture so they are seen. And I think that is a part of this, right? We're creating this common language about this shine a light on these caregivers.
And there's this notion of you can show, your appreciation, can show this language, you can normalize and sort of culturized that “we see you caregivers” by having this little badge that you stick on your email. You're gorgeous Cambia emails right now say Cambia, and then right next to it, it says, "Thank you for being a caregiver." And pushing it out on social media. And then even things as crazy as print out a poster, a flyer, stick it in a window, stick it on a tree, put any mailbox.
And then another way that I think you guys are supporting caregivers is you are, again, this notion of connecting people to the resources that exist that they would not have known it about. Nor would they have had the energy to go seek out. Especially not now and especially when there's so much misinformation.
Making it clear here is a safe place for you to go. You can feel confident that the information you're getting about what COVID-19 is, how it spreads, what the next steps are for you. The clinical, tactical things, but then also the emotional component. What do you do if you're overwhelmed? What if you're worried and anxious? What are other, tools that you can use to plan. And I love that Cambia has that on their site. We've got that same stuff on our site too.
“It's this community being connected to each other and recognizing that any act of kindness matters and that it lifts people up and helps create hope and optimism even when we're going through something as difficult as a pandemic.”
PM: You know what? One of my really good friends who is a caregiver herself. She shared a Helen Keller quote with me earlier this week and it's that, "Although the world is full of suffering, it is also full of the overcoming of it," and I love that quote because I think it's a perfect expression of what we're going through as a country right now and as a human race. Actually, if you look around the world, there is suffering, but there is also the overcoming of it. When you look at our shared caring, the that the number of people who are stepping up to care for each other and they're not doing it for a credit. They're doing it because it's the right thing to do. And I think that it's this community being connected to each other and recognizing that any act of kindness matters and that it lifts people up and helps create hope and optimism even when we're going through something as difficult as a pandemic.
AD: I love that notion of this process that you're moving through. I actually guess it's the funniest story, Peggy you'll also appreciate this. Yesterday, my desk broke in the middle of a day, literally fell over, just the wheel fell off. It's a rolling deck. Everything went under the ground, including this massive, huge gift I've gotten of a big champagne glass, fake champagne glass filled with candy, was crushed all over the ground. And the first thing I did was I kicked the desk, then I picked it up and I kicked everything that was on the floor and then I just sat on the floor and I cried. And I haven't cried in the last bit because I prefer to go-go-go and doing, doing—and coping. That's the notion of this process and moving through it. I can't tell you how much better I felt after I cried.
Another thing we can do for each other in acknowledging that this is hard, give yourself permission sometimes just to break down. I'm not proud. I would have loved to be like, "Oh look, my desk broke, huh? I'll pick it up and keep going." But I was like, if I could have actually laid on the ground because there wasn't candy all over it, I would have done that. I had to sit as it turned out. But I think that's a big part. We've got to forgive ourselves as we move through the process of coping, so that we can get to the beauty and get to the hope and get to the lifting up of others.
LC: Thank you both so much for joining us today. I know we're going to continue this conversation and bring you both back and others to share stories about how this campaign is inspiring and impacting the caregivers in our midst during this pandemic. But I just wanted to thank you, both Peggy and Alex for being on the show and sharing your perspectives and your inspiring stories of caregiver support. Thank you so much.
AD: Thank you. We love you madly.
PM: Thank you for having us. It's mutual and can't wait to speak again and share the stories of caregivers and those who are recognizing them. Thank you.
You can find more information on all our episodes at cambiahealth.com. Follow us on Twitter @Cambia. You can now find HealthChangers on all of your favorite platforms. Just search for “HealthChangers” on platforms like Apple podcasts, Spotify and iHeartRadio. Please subscribe and leave a review.
Resources
- Peggy Maguire leads Cambia’s companywide palliative care and caregiver strategy
- Alex Drane is the co-founder of Archangels
- Learn more: Cambia and Archangels Team Up to Support our Caregivers
- Explore tools: Caregiving Resources During Coronavirus
- Download: Social Media Image "Thank You For Being A Caregiver" with Archangels.Me URL
- Download: Social Media Image "Thank You For Being A Caregiver" without Archangels.Me URL
- Download: Cambia Thanks Caregivers - Sign/Flyer
