 Hello, everyone, and welcome to the crisis conversations live from the Better Life Lab. Today I'm really excited about the people that we have here to talk about family caregiving and family caregivers. You know, in the United States, one in every five people have caregiving responsibilities or active caregivers, and yet they're really not a whole lot of the part of the conversation. We've been talking an awful lot about parents, rightly so, with child care and schools closed and how are they managing in the pandemic. But many, many people care for special needs children. People with chronic medical conditions, aging loved ones and parents. It's an awful, there's millions and millions of people, and we really need to bring them into the conversation as well. So today I'd like to introduce our guests. We've got Jessica Mills, she's a family caregiver in Georgia, and she put off her own college plans to care for her mother with dementia. We've got Debbie Simmons Harris, she's a family caregiver in Minnesota, who had to stop working to care for her son, who has required complex medical care for more than two decades. We also have Jennifer Olson, she's an epidemiologist by training, and she's the Executive Director of the Roslyn Carter Institute for Caregiving, or RCI, which promotes the health, strength and resilience of caregivers throughout the United States. And we also have Karen Lindsay Marshall, she's the Director of Advocacy Engagement and Engagement at the National Alliance for Caregiving, who's been a family caregiver herself. So Debbie, let me start with you. One of the stories that I have heard as we were preparing for this episode is that many family caregivers are really faced with a really difficult choice, either taking the time that you need to give care, you know, or many workplaces don't offer the flexibility or support. So it's really a choice, you know, work or care. Tell us your story, and when did it kind of start at the beginning, if you will? Okay, well, it was a surprise for us. We kind of entered this journey unexpectedly. Our youngest son was born prematurely, and just seven months. So seven months long, actually, and you hear a lot about morbidity and mortality in African-American women when it comes to pregnancy, and wonder about some of the reasons for those statistics, the high statistics, and in my case, it was a situation where I knew that something was wrong, but I couldn't get my providers to listen to me. And so when I questioned whether or not I should have an additional ultrasound, because the baby had stopped moving and his personality, so to speak, had changed, my primary physician or OBGYN had said that I'd already had an ultrasound once, and that's what insurance would pay for it. And so he said we wouldn't try to attempt to have another. So what happened was about a day before Josh was born, I had complications, went into the hospital, an African-American OBGYN was on call for our physician's group, and he said if the mother says something is wrong, I believe it, and I hear you. And so when we went in, he set up a bi-level ultrasound so that our son, Josh, was in trouble and had someone from male rush in to actually perform a C-section emergently. But just as that was going to happen, our physician's group actually came back from a holiday party, and they told him he could go, and they told me that they would just hold off on everything, because it was the weekend, and they would just wait until Monday when more departments were open. So what happened in the meantime, that day in between, Josh went into distress. He had an intraventricular grade 4 and subdural brain hemorrhage on the day in between. And so subsequently, he has cerebral palsy, microcephaly, hydrocephalus, global developmental delay, tracheal, laryngeal, Malaysia. Sometimes I forget all his diagnoses because I don't really think of him in that way because he's a delightful, handsome, content young man. But basically in our mom's circles, in order to get through this, you have to maintain a sense of humor, so we just call it the works. And so he's had complex, yes, so he's had complex medical needs his entire life. We basically had a pediatric intensive care unit in our home the entire time. So how old is Josh now? And sort of like on a day-to-day basis, what do you need to do to take care of him? So when we brought Josh home, we were told to call the coroner because if we didn't, when he died, which you were told would happen two months later, and then they took that back and said it would be two weeks later. So that's all the time that we got. He's actually 27 now. They thought he wouldn't last two weeks and he's lasted 27 years. 27 years. So what's it like, what does it require to take care of him on a day-to-day basis? So now Joshua is, he has a trache, he has a feeding tube, he's on 24-hour feedings through a pump. He's non-ambulatory. He's incontinent. He doesn't, he's not verbal, but he's vocal. So he rakes sounds around his trait and in the context of the sounds that he's making, we know what he's saying. He has a very interesting and kind of unique personality, but he needs suctioning actually 24 hours a day. He's on about three, four, five pages of medications a day. He needs to be repositioned every two hours. He is now on a ventilator up to about eight hours a day. He needs to have a passive range of motion. You know what? It's so funny when you're a mom, you can't even, it's like part of my own body. So I can't even actually separate it from my own function every day, but he basically needs 24-hour high-level nursing care. We don't, you know, with the nursing shortage as it is, there is no way that families have that access to that kind of nursing care. And so my family is trained to provide it as well. So we have two full-time nurses and we just hired on another part-time nurse, which was a difficult decision in this era of COVID, because that nurse also works in one of the main hospitals here in the Twin Cities. So we were really... That's what I was going to ask you. So you've got all of this, you know, pages and pages of medication, all of this intensive care that he requires at home. So what's it been like during the COVID crisis? What additional measures have you had to take, you know, or what have you been afraid of because of the pandemic? It's really a struggle because to fill in those 24 hours, you know, we just, we have nursing, we don't have any nursing on the weekends for the most part. So it's family just rotating those 24-hour wrongs, my son, my husband and myself. And so we, and then the nurses that we do have are just like one-night nurse and then one-day-time nurse for four nights a week and four days a week. And then we fill in the rest. And then my brother was helping us out. And the anxiety that it was producing to have so many people coming in and out of my home and then wondering like what everyone's exposure was when they were away from my house and knowing that every contact that every single person made outside of the home was another risk of exposure for Joshua. And he has so many access points that we don't think about. He's got a trait, you know, he's, yeah, and he's got a history of a respiratory history that is just extremely labile. So he's just, it's such a high risk and he's so medically fragile. And in addition to that, my husband is a career marine and was exposed to Agent Orange. And so because of his exposures, he has a long list of conditions that put him in every single risk category as well. So Debbie, let me come back to you in just a little minute. You know, when we talked before, you were talking about, you know, you had been working and this is something, you know, that your, your income was really important to your family. And then Josh had such intense medical needs, you were faced with a choice of, you know, workplace that really didn't understand or accommodate you. And so you've been, you made the choice for, you know, the only choice that you could. Jessica, let me turn to you, you know, you were also faced with a difficult choice when it came to thinking about, you know, being a family caregiver, you know, can you tell us about your, your choice, you know, and, and then, and then how, how COVID is also impacting your caregiving? Yeah. So thank you for having me. I have been taking care of my mother. She has dementia for about the past 10 years now. I'm 29 years old. So this started when both of us were relatively young. She had just turned 50. I had just moved away from home after graduating high school to start college, did about two years of school before we started noticing that mom was having issues remembering little things like where she put her keys, things like that. And she was still working full time. So I eventually moved back to help her navigate just the whole process of even getting the diagnosis, because like I said, with her age being only 50, dementia was the last thing anyone was expecting. So we had to go through a whole range of tests and what not to rule out everything else pretty much before we said, OK, yes, this is what we're dealing with. And from there had to decide, OK, so how are we going to manage that? And I've, I'm an only child. So between my dad and I, we decided and have been very fortunate to be able to care for her in the home. And that's what we plan on doing for as long as possible. Hopefully, you know, that's our plan is to take care of her in the home because I know she's in the later stages now and isn't able to communicate or like Debbie was saying, she's non, she's not communicating, but she's vocal. She's, you know, she'll still she has ways of letting you know what she needs. And it's hard to know what somebody's needing by that unless you really know that person. So we really knowing her as well as we do, we're able to give her such great care and keep her at home with us where we know she's comfortable and she's happy. And it's just like I said, we've been very fortunate to be able to do that so far. But my dad had to go into early retirement. I worked as long as I could part time until her needs just became where she's needing care 24 seven and neither one of us can work now. And that's even with having hospice nurses and what not coming in a couple of times of the week, it's just still a lot of the care falls on us. And yeah, it's difficult. So so how are you, how are you able to survive? How are you able to kind of like make ends meet? And, you know, particularly now with the pandemic raging. So for the past, I haven't been working in the past two years and we were lucky enough to have savings that have gotten us through and that's just not unfortunately not going to last much longer. So I have been looking into I've started school again online and I'm looking into however I can get back into the workforce in whatever way possible just to help because if I'm if there's some sort of income coming in for me, then we can, you know, potentially hire more help. And then that just really the strain on both me and my dad and just makes everybody's job easier. So yeah. So so Karen, let me let me turn to you at this point, you know, can you help put Debbie and Jessica's experience as sort of in a broader context? You know, Jessica talks about how because the care, you know, they're they're relying on family savings. But, you know, you there's other research that shows that so many American families, they wouldn't even be able to scrape together $400 in an emergency. You know, that's, you know, that's quite a bit of a burden that that we're placing on a lot of families. Can you can you help kind of paint the larger landscape of kind of what family caregivers are, you know, what did that? What are their challenges before COVID and now during COVID? Thank you, Bridget. Yes. So much of what you said, Jessica, and what you said, Debbie, resonates with both me as a family caregiver, a former family caregiver and the caregivers in our advocacy network. So thank you for sharing those those deeply personal stories. So many elements like of those stories, like I said, resonate across the caregiving spectrum from the types of tasks that you have to help perform like medication management, which is a very difficult job, complex nursing duties, coordinating care. And most of 61 percent of caregivers are in the workforce. So they're doing all of these things while they're also trying to stay employed. So there's no wonder that caregiving has a huge impact on an individual's personal health, their mental health, as well as their financial health. So a lot of times I think we think of caregiving as a personal issue or a family issue, and it is, it's deeply personal. And it is something that is very multi-layered with the caregivers experience, the experience of the care recipient and other members of the family. But it's also a public health issue, which is why now, especially in the time of COVID, it's so important for us to to look at these issues. And fortunately, and I say that ironically, the pandemic has pulled the curtain back to reveal so much of what caregivers have been going through both before and during COVID. So if you imagine these issues that both Jessica and Debbie just mentioned, their experience in them both before COVID began a few months ago and now. And that's the same for caregivers across the country. Fifty three million caregivers to be exact, according to research that we recently published with the with AARP. That research was pre-COVID data with everything that's going on. The number of caregivers is increasing and it could be expected to increase. And so can the personal, mental and financial health issues that I just mentioned. Right. So Jennifer, let me turn to you at this point. You know, this is this is an issue that you've been looking at as an epidemiologist, but also this is something that the Roslyn Carter Institute has been very deeply involved in. Can you talk some, you know, again, about some of these broader issues, how COVID is playing out and the work of the Institute? What are, you know, kind of what are you all looking at and most concerned about right now? I think the biggest area of concern right now from the caregiver landscape is exactly as Karen brought up and Jessica and Debbie are highlighting. Caregivers are not seen as a constituency. The numbers of caregivers continues to grow. And yet when you think out on a website, caregiver support, it's usually the subpart on a menu rather than being kind of the dedicated focus. We think of caregivers as a critical element for our social sector, our health care sector, and yet we don't see very many opportunities where the caregiver is the center of that conversation. They're usually the afterthought. Hmm. So can you talk a little bit of, you know, I know that you just recently wrote a letter to Congress talking about some of the challenges that caregivers face kind of in this immediate era area, you know, with the pandemic and what they really need. Can you talk a little bit about, you know, what do caregivers, family caregivers, what do they need, you know, to get through this, you know, this pandemic and kind of what do they need long term? I think there's a few categories. The first being caregivers, conditions, mental health and physical health needs to be an area of concern. How often ask Jessica and Debbie, if when they go to the doctor's office, if the doctor ever asks them if they're a caregiver, you get asked to questions about how, you know, how much you're sitting during the day or if you're eating the right fruits and vegetables. But we know that caregiving impacts people's health, as Karen said, physical health, mental health, financial health, and yet we don't engage in those conversations. So what we see in COVID is a chance to bring the caregiver conversation out. The example I've been giving is at work right now, people are talking about in their virtual ways or when they're talking to coworkers, you're more comfortable to say something like, oh, I have to go pick up groceries for my loved one or I have to take care of, you know, get a prescription for my grandma. That's becoming a more of a water cooler, although in the realm of Zoom, maybe water cooler isn't the right frame. But the water cooler conversation, you know, how can we continue to get that conversation out and to say these issues are, exist, caregivers are part of every community you could think of, every sector group you could think of, there's caregivers in that community, every employer has caregivers in their workforce, every store has caregiver shopping in their aisles. You know, do you think that it's something that we haven't paid a lot of attention to because there is this assumption, you know, kind of through the years that, well, somebody's just at home taking care sort of like this old kind of an outdated breadwinner homemaker notion that they're like, I think Heather Boucher says, the American wife where, you know, there is sort of like the woman supposed to be at home. And and of course, we know that was never true for all families in the United States, but that within policymaker circles, you know, that that is a notion that stuck. Do you think that that's part of the reason why, you know, these issues have not been sort of front and center until now? In some ways, yes, because the word caregiver conjures up a vision in a lot of ways of an older person, usually an older woman taking care of an older man and kind of very distinctive visual of like, oh, that's the support that's supposed to happen. Whereas as we continue to hear the caregiver's story is part of a variety of stories and people are coming up with new and different ways to be distance caregivers, to care for the person they have a divorce from. I mean, caregiving is kind of transforming right now in a way. And and I think the image that people have in their mind is that is that kind of single image of what it means. And and I think the tasks are changing. You know, I think people think of kind of tucking someone in or cooking them a meal as kind of these very discrete tasks. But you've heard there's obviously really complex medical tasks. There's there's tasks related to protecting someone from financial fraud. There's all sorts of elements of the work up and modifying somebody's home. I mean, I think it the tasks are changing, the functions are changing and caregivers are 3D beings and we kind of continue to have a one dimensional view. So let's, you know, so Karen, if I could go back to you, you know, so what are some things that caregivers really need if they've been sort of this invisible force that we've all relied on, you know, I think in the the report that that you mentioned with the AARP, there's discussions of, you know, workplaces and work cultures need to be much more flexible and able to adapt to people and their caregiving needs. You know, when you just look at public policy, we don't support families very well in this country. And even the emergency paid family leave bill that Congress passed, it exempted, you know, people like Debbie and Jessica. You don't get paid family leave or under the, you know, the emergency provisions. So Karen, what are some things that that that family caregivers really could use and like, you know, how do we make them more visible? But also how do we create the supports that they need? And Debbie and Jessica, I'm going to ask you the same questions in just a moment. So we'll be thinking like, what do you what is it you need? Well, according to our research, 45 percent of of caregivers report having been financially impacted by caregiving. And like I said, 61 percent work in addition to their caregiving. So it's very important in addition to policies like the paid leave policies for family caregivers that we've been talking a lot about, especially during the COVID area that we look at a comprehensive package of financial and workplace supports that can help family caregivers and they can range from paid leave to tax credits for expenses that are associated with caregiving. And they can even go beyond things like taxes and tax incentives to employer culture. These conversations that Jennifer mentioned around the water cooler, they need to continue. We need to recognize caregiving as a by as a very important role in our society that really contributes to the fabric and structure of how we live. And that goes for you and me. That goes for our coworkers and our employers, our neighbors and it also goes for us within the caregiving community. The more that we can self identify and think of ourselves as more than, oh, I'm a daughter, in my case, I was a daughter and my caregiving was part of my responsibilities as a daughter, which I cherish very much. But it's very important to also think of myself as a caregiver who plays a role in a public health system, who has a seat at the table when health care decisions are being made. And it's so important for people on the other side of that table to recognize that role, right? That you're that you're an active, active part of whatever plan needs to happen. So Debbie, you wanted to talk a little bit about acute care. Can you talk about that? And then also, you know, from your from your role as a caregiver, what do you see? Well, what needs to happen? What how do you need to be supported? What would help you overcome some of the challenges that you've been facing? I think there's a profound need to profile our stories. Because I don't think people realize in addition to the weariness and there is joy in all of this, too, because it impacts our lives so profoundly and expands our lives so profoundly. So that that aspect needs to be shown to you, but there's a weariness to caregiving over such a long period of time. But then as well, there is an entire population of us who start when with our children who are considered chronic care. But they're kind of the Josh is like the first generation because of technology, who are acute care, but have lived as long as chronic care patients. So so so in addition to the custodial care that that we provide, there are days upon days where you're doing like high level nursing assessment and interventions that would be done perhaps in an intensive care environment. So he might have because of his autonomic dysfunction, he might have a heart rate of thirty four at one part of the day. And then maybe an hour later, it might be one hundred and eighty. And so there are assessments and interventions that you have to do and decisions you have to make, especially now in this era of COVID, because you don't want him to go into a hospital. And there are a lot of issues about transition where we don't know really where to even take our our our kids who are kind of in between where they've only been at children's hospitals and we don't know what adult hospitals looks. You know, we don't know where to take them because they don't know them there. And so I think there's a profound need to profile our stories and educate people about who we are and what we do in a day to day basis, because it is so challenging. And when Josh was born, it was the same time that the Family Medical Leave Act was was was legislated. And so we're here we are. We're still fighting for paid medical leave. And at the time, I my family was trying to go from two incomes to one income, which was pretty financially devastating. But I carried the main insurance to provide for Josh with needs and my husband worked on contract. And then finally, just at chipping away as much as we could by my taking time off to be at the hospital with him because he had 10 surgeries the first year. Wow. And countless hospitalizations for respiratory infection and other illnesses. We just had to make that jump. And I had to I had to resign from my job. So like Karen was saying, we're such a huge part of the entire health care system. And we're we're providing such a valuable aspect to this to the system as a whole. So we need to be profiled and we need to be supported. And when we say monetarily, it's not that we're trying to exploit the system. But we need to survive, right? And we need and we need morally to take care of our citizens who are vulnerable and need to be taken care of with dignity. So, Jessica, you know, talk about in, you know, in your situation, you know, what do you what would you need? Or what, you know, what would help support you and your family in the caregiving that that you're giving to your mother right now? So what I really hope that people take away from conversation, I think conversations like this are very important, like definitely this is a start. And I'm very excited to be a part of it. And I hope that people take away just just a better idea of the overall scope of challenges that caregivers do face on a daily basis. And especially as Debbie mentioned, when it's carried out long term, but just exactly like she said, I think a lot of people know about the negative sides of caregiving, but there's so many positive and rewarding things that come with it as well. So I really do want people to be aware of that so that they're maybe not so afraid if they ever have to be, you know, think, hey, do I need to take on caregiving for a family member or a loved one at this point? I think maybe if they knew that there was enough support and resources out there that maybe they would be more willing to take on that challenge. Because I know things specifically like RCI has been just an incredible wealth of support for me specifically to take care of myself. You find a lot of how to be a better caregiver to the person you're taking care of, but not so much of how to be a better caregiver for yourself and for other caregivers. No, I was just going to say, tell us a little bit about so what, you know, what kind of, what are you learning through RCI? What, you know, kind of, how is that supporting you? Kind of tell us a little bit more about that work. Yeah, so it's, you get a coach and I think coach is the perfect word for it because they were like exactly what I needed at the time. I didn't, I wasn't even aware that I was needing that kind of support for myself, but once I started meeting with my coach, she would remind me, you know, Hey, it's important to take care of yourself and just suggest like stress management techniques and things that you would never think of for yourself because you're so busy focused on the person that you're taking care of you. It's easy to neglect yourself. And so I really needed that reminder, especially during the time of COVID when everything you're just kind of everything's going crazy and you're just worried about taking care of your loved one and not so much thinking about your own health. So having that reminder was very nice. I'm just reminding you, Hey, take a deep breath every now and then, you know, eat healthy, do some exercise, kind of like you're mentioning as far as like doctors don't necessarily look at that side of caregivers, you know, but it is very important that caregivers take care of themselves so that they can continue to be effective for their loved ones. So, so Jennifer, kind of what are some, what are some, some of the stories that you're hearing during COVID from, you know, so many of the different coaches and the different family caregivers that the Institute does work with and does, does look to support. I think a lot of our caregivers are saying that the skills that they need as far as problem solving and engaging in or connecting with family and friends to build a support team are as critical now as ever. Caregivers have often been some of the most resilient and creative problem solvers in this country. And I actually think there's a moment to say, well, we could learn so much from the way caregivers adapt to challenges. I think there are people who see that caregivers are existing in this challenging environment every day and could be an example in the way that they have adapted, they've handled, they've, they've multitasked. I mean, when you listen to any caregiver story, you think, wow, you've got a lot on your plate and yet you're still doing an amazing job. So I think there's some opportunity there. And then, you know, what would they, what would caregivers need to make that juggle and all the stuff that they do have on their plate? What would, what do they need to make it, to make it easier? Or as Jessica says, you know, to, to make people not so afraid of it or even choose it willingly. I mean, I'll go with something. Mrs. Carter reminds me all the time, which is most important thing you can do for caregivers to check on them. I think we all all know at least one caregiver in our life right now. Even our caregivers who are on this call could probably think of one other caregiver and they could all just use somebody to just say you're there for them and whatever that's in them in that time, not ask them what you can do for them, but just say that you're there. That's the best thing you can do. So, so we're coming down on time. So Debbie, I'd like to come, come back to you, give you the last word. You know, when we're talking about what caregivers really need, you mentioned that when your son was born, that's when the unpaid Family Medical Leave Act passed. And here we are at 27 and there's still no paid family leave. What else, you know, you had to leave your job. What would you like to see in the future? What needs to happen? You know, kind of think big for someone in your, you know, that might be in your position, you know, 10 years from now. What needs to change to make their, you know, their situation easier or better? I think for for us and I and I'm just speaking from our situation and what would have made our lives easier in addition to just fighting for Josh and to, you know, learn how to take care of him to to save his life and to make his life comfortable and to normalize life for our other children. It seems like it was a full time job fighting to keep benefits and to get benefits. It was a full time job and it was a serious struggle to keep insurance and to get nursing care and to just get the resources that we needed to maintain all of this and to keep him at home and to get supplies and equipment. All of it is so tangled up in bureaucracy and questioning of our intentions and it's also difficult. And there has to be a way to streamline that and and also support families with some type of a compensation for caregivers because that I think has made our lives more difficult than the actual caregiving part, you know, the actual hands on caregiving because you learn you learn the person that you're caring for. And that becomes part of you and becomes natural, even though it's often scary. But the part that you never get used to is this other part, the full time job of trying to access resources and to continue to fight for what you need to keep this whole machine going. That's really hard. All right. Well, we'll leave it there. Thank you all so much for joining us today to have this and this really powerful conversation, hoping to bring some visibility to family caregivers who for like you say, fifty three million who for so long have been so invisible. So thank you to our wonderful panelists. Thank you to all the participants. I see that there are some resources in the chat. We'll make sure that we send those out as well. I'd also like to thank the New America events team, the Better Life Lab team, our producer, David Schulman. Next week, we'll be talking about a really exciting and interesting behavioral science project looking at work life conflict and trying to design interventions to ameliorate it and and how that's translating into the era of covid. So in the meantime, wash your hands, stay safe, wear a mask and we'll see you next week.