'Sandwiched' between care for children and aging parents

0:00This is an archive edition of Talk of Iowa from Iowa Public Radio. I'm Charity Nebby. Many people in their 40s or 50s have found themselves squeezed in the middle of raising and caring for kids and caring for their aging parents. We are, at this moment, the sandwich generation, and this unique combination of pressures includes plenty of stress, time pressures, financial challenges, emotional fatigue, guilt, and more. Today, I will talk about these challenges with caregiving experts. And with me today is Michael Wegler. He is the Iowa State Director of the American Association of Retired Persons. You know it as the AARP. Hello, Michael. Hi, Charity. Thanks for having me on today. Well, thank you so much for being here. Also with us, Harlea Buckshe is the Sally Mathis Heartwig Professor of Gerontological Nursing and the Director of the Somme Center for Gerontological Excellence at the University of Iowa. Harlea, welcome. Thank you. And Michael, I want you to start us off. I gave kind of a thumbnail sketch of what defines

1:04the sandwich generation. But tell me a little bit more of, you know, who is in this squeeze right now and what are some of the things that they're dealing with? Excellent. Yes. The sandwich generation is part of a larger category of folks of family caregivers. And family caregiving is a huge chunk of who we are as humans here in Iowa and across the country. There are over 330,000 unpaid family caregivers across our state. And it is estimated that about 30% of those caregivers are considered sandwich generation. So that's the folks that are, as you noted, caring for aging adults as well as young kids. But the other side about this sandwich generation that is important to note right up at the front is I said about 30% of unpaid family caregivers of that 330, 330, 330,000 unpaid family caregivers is a sandwich generation. That was from 2019 study from AARP. That is a huge increase from 1999

2:09when it was estimated about 13% of family caregivers were sandwiched generation. So it's only growing as we get further along. Why is it growing? There's a number of things to play. One is we're living longer. So there is that reality that older adults are living longer, they're having longer opportunities to be a part of our lives. The other side is the growing reality of diseases and different things that are part of our life that really change how we age as we get older. So it really puts us into that middle piece. The other side is the pandemic played a big part of this that ties it back to the workforce reality of those family caregivers and what the reality is from a financial side of things for the cost of housing. But also for the cost of what it means financially for a person to be in the workforce during that time and to have kids in the mix of all of this. Well, and when you say 30% of these unpaid

3:14caregivers are sandwiched generation, I do want to make it clear that that doesn't mean that they are solo caregivers for their aging parents. I mean, most of us are part of kind of a care giving team, at least if we're lucky, right, Michael? That's correct. And I actually fit into this, the sandwiched generation of family caregivers as a caregiver for my parents, both who live with dementia as well as having teenage kids. So it's the reality that I fit into this side of things and it really, you know, directly addresses your point of, it takes a village. I am lucky enough to have my sister that is an active participant in this co care giving reality. My wife is a big part of that. My family, even my kids are part of this. So when it talks about family caregiving, it is not just about one person. It is about the family as a caregiving team. So I want to talk more about some of the different elements that are coming together to maybe increase this part of the population, making the filling in the sandwich

4:17a little bit bigger right now. And Harlea, I know that you have some thoughts on that. Right. And also social changes, let's say, in the 60s and 70s that families were also smaller. If you've only had two children and the age for the baby boomers, actually the average was 1.8 children. It's that idea that you don't have as big of a network that you can tap into. And the boomers have changed everything. And I self-identify as one. So please no one on the call to be, you know, offended, say, okay, boomer. Okay. That's great. I'm always a big believer. You only talk about your own group. But, you know, in every social system that we have hit before, we have changed. They had to build more maternity hospitals when the babies were being born. They had to build more schools. And now it's really hitting the health care system in terms of that's where I intersect with family caregiving to a large degree is to say this is an unprecedented

5:22generation of older adults who are going into their later years much healthier. They are going to live much longer. So you're not caregiving for let's say five years. It's possible you could be caregiving for 25 years. Well, and Michael already mentioned the pandemic, which hit health care. So hard. So we have a global nursing shortage. That is a huge element in this, right? Absolutely. So at this point in time, we're really expecting family caregivers to pick up some of the slack of the nursing care that's not available. When you get to the phone call saying that your care recipient is being discharged from the hospital in an hour, that's a scramble. Because all of a sudden, maybe they have wound care. Maybe they've picked up and added disability while they've been in the hospital. Maybe there's a medical regiment, you know, medications and things that you suddenly have to get up to speed. Maybe they're not safe to be

6:23at home alone. And it amazes me as having spent four years in college to become a nurse that this family caregiver may have at best 20 minutes with a train nurse to get up to speed to deliver the same amount of care, the same kind of care as that train nurse. Wow. That certainly puts that in sharp relief. And Michael and another problem to refer to the pandemic and all the years that have followed since the onset of the pandemic, we have seen increasing shortages of placement available in care facilities. We have seen increasing concerns about safety and staffing in these care facilities. So a lot of the institutions that we were depending on may not feel, and I know there are some great facilities out there, but may not feel as dependable right now, but that's concerning. Yeah, it really hits the workforce reality that is tied to care giving on a number

7:26of different facets. But it also ties to the challenge that family members have as needs grow with their older adults that they're caring for. So I also want to talk about the financial pressures. A lot of gen-exers and younger boomers are still financially supporting their millennials. So this crush, this sandwich financially doesn't just affect people who have minor children in the home, does it? It really does. And on average, caregivers in Iowa spend about $7,200 out of pocket. So that really starts to strain the edges as it relates to what their home budget looks like and to what their reality looks like as it ties to the strain of caregiving also ties to the strain of staying in the workforce. So you kind of start to feel that piling on of the financial stresses from multiple levels. And this is just an observation from my life, you know,

8:27knowing my friends. I know that boomers sometimes waited longer to have kids. Gen-exers, a lot of us waited longer to have kids. So now, you know, my mom was 29 when she had me, I was 30 when I had my first child, I'm 50 years old, I have a, you know, a sudden high school, I have elderly parents who need help. So is our generation getting squeezed even more Michael because of these just the changes in our society? I think it's a different kind of squeeze. I agree wholeheartedly with everything that you've said and what Dr. Bucket said about kind of the social family realities of this generation versus others. To me, it comes into really starting to be the new reality for what family structures look like. And that's where, you know, a little plug for ARP of looking at how we think about intergenerational communities and livable communities in new ways. So it's not just about a chore of caregiving, it's actually about

9:33kind of the family responsibility, the family application, and that joy of being with family members maybe more meaningfully, maybe more intensely than you would if that caregiving responsibility wasn't there. We are going to take a short break. We'll be back in just a moment. Today we're talking about the Sandwich generation. And if you are sandwiched, we want to hear from you. Give us a call 866-780-910-866-780-9100. You can also send e-mail to talkavioa at iowa-public-radio.org. With me today, Michael Wegler, the Iowa State Director, the American Association of Retired Persons, and Harlea Buck. She is the Sally Mathis Heartwig Professor of Gerontological Nursing and the Director of the Somme Center for Gerontological Excellence at the University of Iowa. This is Talkavioa.

10:47Talkavioa from Iowa Public Radio. I'm Charity Nebi. This hour we are talking about the sandwich generation that group of people maybe in their 40s or 50s at this day and age that are sandwiched between caring for children and caring for their adult parents or their elderly parents. We're talking about some of the unique challenges and we're also going to talk about some strategies for coping as well. With me today, Michael Wegler, he is the Iowa State Director of the AARP. Harlea Buck is the Sally Mathis Heartwig Professor of Gerontological Nursing and the Director of the Somme Center for Gerontological Excellence at the University of Iowa. And I also want to bring into the conversation another guest, Seal Miller-Bouche. She's a travel writer and journalist. She's a member of the Somme Center and co-leader of their adult child caregiver group. She's also, of course, a member of the sandwich generation Seal. Welcome. Hi, it's great to be here. And I would love for you to share

11:48your story. Tell me just a little bit about what's going on in your family. My story touches on a lot of the different points that Michael and Leah brought up. Four years ago, my folks were 92 and living independently in Iowa City, which is my hometown. I moved away at 18. Never thought I would be back except for to see my beloved parents. We raised our family around the world and mostly in the Chicago area. My folks, they were 92 then. Now they're both 96. They live at a local family-owned nursing home because they need full-time care at my husband and I moved back to Iowa City four years ago to care for them. And to be there for them on their sunset journey, I feel like what Michael said about family caregiving networks is so important. And one important point is that our generation, I'm on the cusp of Gen X and baby boomers. So I'm in between folks here. Our generation, it was very mobile and a lot of us moved away from our parents. So

12:54I feel like now being back, that's the reason that my folks are still stable and in good shape. You mentioned that and that's a very American thing to do is to grow up and move away. We tend to live much farther away from our family unit than people in other cultures do. I mean, seal, that creates a lot of challenges. Exactly. It really does as a child coming back to where you started out. But this is definitely, I was lucky. I had my husband, my adult children, they don't live in Iowa, but they're very supportive. So I do have that support network. My brother is in DC. He helps out. But we are, I am the one who's responsible for my beloved parents now. Yeah. What brought you to the Somme Center? Well, four years ago, trying to make new friends in my hometown during COVID, I went to a newcomers club and I was fortunate enough to meet another newcomer

14:01die with city. Jennifer Jones, who is the, let's see, she works as the help me. Exactly. She's the program coordinator for Optimal Aging Initiative, which is some alums at the University of Iowa really focused on family caregiving had made a request to us that allowed us to really start doing the deep dive into how can we help family caregivers do what they want to do, but to do it better with more resource. Exactly. And so, and Jen just has a gift she herself is a sandwich generation caregiver. And so she and seal bumped into each other. And as they say, the rest is history. See, I'll take it. It was so fortuitous. I was super busy with my paying job and also getting into the, you know, figuring out what to do. I was overwhelmed what to do to help my parents. So like six months later, I kept Jen's card. I got in touch. We had coffee.

15:07We realized the huge need to provide information, connection, community, and support for adult children who are caring for their parents. It's a very unique emotional journey. So, so we started a little group thanks to the Somme Center. We partnered. I'm just a volunteer. And so far, we have a lovely 50 plus email list. Folks can sign up to be on our list. We provide information. We have meetings once a month, sometimes in person, sometimes via Zoom to provide information and tools for caregivers. Well, and it's interesting. I think about the the journey to becoming a parent. I'm a I'm a reader. And so when I was planning to become a parent, I read a lot of books. I found the series of books that, you know, felt like this is the approach that I want to take. And there are all these resources everywhere online all over the place. And of course, they'll tell you

16:11different things. But still, there's a whole lot there. When you are caring for an elderly parent, there you can read books about diseases. You can read books about what your, you know, your loved one may be going through. But there's not really a whole lot of guidance seal out there. There's not. And I remember like my baby Bible was what to expect when you're expecting. I don't know if you had that book too, but there wasn't my choice. I had that one. But I feel like we there's no book for this journey helping your parents to their sons at years because unfortunately, you know, it's not something that a lot of people are comfortable speaking about, you know, health problems, the challenges of aging, the excruciating. It can be very rewarding, but it's also truly the most difficult journey I've ever taken. And I'm a travel writer and I've

17:14lived around the world. So I mean, and I'm fortunate. But we hope through this group to provide community, which is so important, you know, when we were, I remember being a young mom, you, you have your pediatrician, you have your friends, you have the elementary school, you know, drop off whatever you have, all of these ways to get information informally, which is really helpful. But as a caregiver and adult caregiver, I felt very isolated. I don't know how you feel, but it's true that finding the right, the information is really tough because there's no central point to meet others. That's what we hope to do with this group, right? And so, so how did that feel once you found people to connect with? How did that change your experience? Well, it changed because I feel as women going back to what we were talking about. We're mostly women, you know, caregivers here in Iowa, family caregivers, I feel like I need a community to, to talk to, to get information from.

18:23So I've found that community, thanks to Jen, you know, the Somai Center with all of the resources that they have and the ones that we are trying to provide that can connect caregivers with resources around the community and with each other. Of course, every, every sandwich is unique. I mean, Michael, we know that the people can be caregivers really no matter how old they are. That's right. And there's so many of these points that come up to the reality that everyone's, you know, while there is the category of family caregiver, everyone's caregiving story is different, which only makes it harder to find those resources, like Ciel and Enly said, is that reality that because everyone's caregiving story is different and the needs are different, it's hard to have one, you know, set book that tells you all of the answers. But one of the things that I've learned as through my journey and one of the things I hope that this conversation is a catalyst for for the listeners across the state and country is there's so many times when you could be just a little bit

19:27vulnerable and open up to others about what your journey is. Exactly what's happening today has happened to me so many times where I find out that so many people in my circle, personally and professionally, are also caregivers that also have, you know, similar but different experiences. And we've, you know, I kind of have an informal support group that's come up just by opening up and saying that, you know, it's uncomfortable to say sometimes, but that reality that, you know, I am a caregiver and I do have to step away from work or I do have to step away from that, that fun thing that I want to do this weekend because of my caregiving responsibilities, but how many meaningful connections I've made with others and the circle has been really cool. Michael, tell us just a little bit more about your personal experience because you mentioned that you have teenagers and that you're also caring for your older parents. Tell us more about it. So like many caregiving stories, it was an incremental process. It started slow and tell it wasn't anymore, but my parents both lived with dementia. My mom was diagnosed about six years ago

20:31and was unfortunately involved in a car pedestrian accident in a downtown area that really expedited her advancing of her dementia. My dad's dementia started a couple years later after some hard issues and so each of them had this process that they need a little more help and support to navigate the healthcare system as it got to be more advanced, navigating, driving and getting to importance and understanding their housing options and the support of the finances. So it's one of those situations where where my sister and I didn't really identify as caregivers, we were just helping my parents out and then at some point we realized that, you know, there is this gigantic mountain of responsibility that we've collected over the course of, you know, a handful of years. So as those, you know, as that incremental process started to grow, we really started to realize that there were some very difficult conversations that we needed to have as family members as a family

21:33unit, everything from, you know, logistical things like powers of attorneys and and wills and trusts and really what my parents, you know, desires were for not only end of life, but how they would choose to live. So it's that reality of, you know, we talk about the many different stresses that come into family caregivers, many of them are completely unexpected and as someone mentioned before, it's that reality of, you know, especially as a sandwich caregiver, you're getting calls on a regular basis during the middle of the day, just like last week I was in an important work meeting and I had my youngest son, my eighth grader texting me that he forgot his permissions for the upcoming, you know, field trip and I needed to get that field, you know, that permissions to them. At the same standpoint, I was getting a call from our health system that my dad was in the hospital now with some unexpected kidney issues. So it's that feeling of stress always and at the point that you don't expect it, that really started to define, that have started to find our

22:38story for caring. Well, and with every caregiving journey, you know, every individual is different, so every journey is different, but also it often depends on what those you're caring for are dealing with and you specifically, Michael, in caring for people with dementia, that brings with it a lot of challenges. You are caring for people who have been adults, you know, independent adults, responsible for all of their needs for a long time and that that decline can be hard to accept, but also you need compliance, you need their help to be able to take care of them too, and that's a really unique minefield to weave through. It really is and specifically from the dementia perspective, you know, you're also grieving the long goodbye, that the reality of that disease is. But in some ways, you know, with my specific story, it's, you know, my wife and I, our family

23:40have tried to incorporate our kids into the caregiving process as much as feasible and possible, but in some ways it is almost like, you know, we're teaching our teenagers to become more independent adults while at the same, you know, in the same day, we may be providing care for my parents that are at the level of, you know, my kids 10 years ago. So it's almost like this inverse reaction of just feeling like you're always parenting from that side of things. We'll talk more about that in a few minutes because you, so many ways you can't parent your parents, you can care for them, but you kind of, you know, you get what you get. Sure, sometimes feels like they're very similar, things involve, trust me. All right, but also, I mean, Michael, you mentioned grief, which is a huge part of this journey because caring for your aging parents, the end of that is death. You know what direction you're headed in. So there is that grief with dementia,

24:45the losses sort of pile up over and over and over through all of the years. But you also, you're missing out on stuff that you probably want to be doing with your kids. So are you also, you're dealing with frustration or grief over not being able to do the things you imagined you could do? Even sometimes anger. Yeah, right. Yeah. And all of that always together. And you know, it's, it's sometimes, you know, as simple as, you know, we work so hard to my parents, we were raised in Southeast Iowa. We're all in the Des Moines area now. And, you know, bringing, you know, doing all we can to get our parents up in the same living area that we are in so they could take advantage of going to soccer games and graduations and things along these lines. And we have an eighth grade graduation coming up for our youngest. And it's going to be very difficult because of some current health issues to have them participate. So it's that emotional toll every day. We're going to take a short break. We'll be back in just a moment. My guests are Michael

25:47Wiggler of the AARP, our Leah Buck of the University of Iowa. And seal Miller Boucher. She is a member of the Somme Center. And we will talk more in a moment. We'd also love to hear from you. Give us a call. 8667809100 is the number. This is Talk of Iowa. Like pruning shears or a hand travel, the Garden Variety podcast is a trusty tool to add to your garden caddy. Every show brings you quick, actionable advice that you can put to use. Subscribe and follow along at ipr.org slash garden. I'm Charity Nebby and you're listening to an archive edition of Talk of Iowa from Iowa Public Radio. This hour we are talking about the sandwich generation people who find themselves squeezed in between caring for their children and caring for their aging parents. With me, Michael Wiggler, Iowa State Director of the American Association for Retired Persons, her Leah Buck. She is the Sally Mathis Heartwick Professor of Gerontological Nursing in the Director of the Somme Center for Gerontological Excellence

26:51at the University of Iowa. And seal Miller Boucher. She is a member of the Somme Center and co-leader of their adult child caregiver group. And seal, we've heard your personal story, Michael. We've heard your personal story. This is also something you've experienced to hardly tell me about your story. Absolutely. We provide my husband and I, provided care for his 84-year-old mother for several years towards the end of her life. And I had two middle schoolers at the same time. And I laugh inly said to seal one time, you know, same issues, older body. But just that idea of, you know, changing levels of dependency versus, you know, being autonomous, people who wanted to make their own choices, but maybe were not making the choices you would have made. But so I definitely felt sandwiched to that point. But at the same time, I was also a nurse making home visits to families with chronic illness. And watching how hard it was for those family caregivers to take care of somebody,

27:54who does. And most older adults, generally about 80% of older adults have at least one chronic illness. And so families are juggling whether it's visits to the doctor, medication regimens, trips to the pharmacy, keeping track of, you know, what's going on. I got to see up close and personal as a nurse, how tough that was for families. And in some ways, that's actually what caused me to shift from being a clinician full-time to becoming a researcher in my area of research as family caregiving. And so, but I remain passionate about it one because of watching people walk through this, but then my own personal journey in it. And as you've heard from the three of us on this call and yourself, actually charity, it, that's what drives the passion, right, is the experience. And also the sense of we could be doing it better. Well, that's, that's with any kind of caregiving, you always think you could be doing it better, for sure. I also want to bring

28:56to light though, when you look at family caregivers, Michael talked about that, that huge number of family caregivers who are unpaid. Harlia, the vast majority of those caregivers are women. This is work that falls to women. It really is. And in particularly, I'm deeply grateful to AARP in a 2023 paper where they actually cost it out. How much uncompensated care is delivered by primarily women. And across the country, a number they came up with was $600 billion. And it was just amazing. That is more than the US spends on home and community case, a based services almost by a two to one. And so I think that it's time for a frank conversation about this uncompensated care. Once again, as a nurse, I was being paid every time I walked into

29:56the household. And I was there for maybe one hour out of a week, whereas the family caregiver, oftentimes a woman, my same age, was doing it 24-7. Well, and Michael, we talked about the financial challenges of caregiving and particularly for the sandwich generation who are also supporting children, children are pretty expensive. But people do wind up being in a position where they actually have to scale back their work or quit their jobs to be able to care for the people that they love. And that creates even more of a financial burden. That's right. And one of the things that AARP is doing nationally is working on a credit for care, which is hopefully a tax credit that would be eligible for unpaid family caregivers to help offset the financial stress and reality of what this would look like. It's a small drop in the bucket, as Leah said, of what the investment

30:58of these family caregivers are. But it is one way that AARP is making very strong inroads in supporting family caregivers. Do you feel like this is the time when we can move forward to actually take care of caregivers better, Michael? Like many things right now, it is unpredictable on what that future holds. But one of the things that we want to do is make sure that we are keeping that cadence of the family caregiver conversation continually moving forward, even in the face of challenges. And AARP, like many organizations, is battling a multifaceted conversation right now. But that credit for caring and other ways of keeping the storytelling of the importance and the significance of the family caregiver reality in our country is important to keep moving forward. Seal, I would love your thoughts. And all of you probably have thoughts about this. But of course, you know, if you have a sibling or multiple siblings and you are an adult child caring for your aging parents, then you probably feel lucky to have siblings most of the time. But also

32:06that can be a fraught situation. That can be difficult. Seal, do you have some advice for people on how to divide up responsibility and communicate with their siblings? I do actually. I'm fortunate. My brother in DC, he agrees with everything because I'm here on the ground. So that's perhaps an unusual situation. I know that many of my friends have siblings where it's more complicated to communicate. And they might not have the same ideas about how to move forward to help their parents, especially when health care is involved and end of life decisions are involved. So I feel like definitely obviously being in touch is important. But also there are resources out there that can help families move through these conversations. And that's one of the things with our caregiver group that we're trying to help with is provide connections for experts who are very, very used to

33:13dealing with these situations to help families make the best decisions together for their elders. Do you want to add anything to that, Michael? Yeah, I think the the reality comes back to finding those resources like Seal said. But it's also getting over the challenge of accepting help or asking for help. And I think many family caregivers get in that world of they're not wanting to share what their experience is or they know that their resource is out there, but they don't either have time or have the emotional capacity to take advantage of them. And to me, I think that's where a lot of us struggle. And me included on that. Yeah, I struggle a lot initially with that as well. And finding your community is super important. Well, and finding the resources to help you do what you need to do. We know we have area

34:13agencies on aging in Iowa, which are, you know, bring together some resources. We have other organizations in communities. I would love for each of you to give me your personalized advice for, you know, when you're in a situation where you're caring for your aging parents and you're not sure where to turn, where to look, often their medical providers don't have the information that you need. So where do you start? And Michael, I'll let you start and then we'll go around here. Excellent. Well, one of the one one of the ways that we always talk about it is AARP and AARPI will have a caregiving resource guidebook that at least gives you a starting point in those area agencies on aging are a big part of that. The other piece that we're excited to have roll out the summer is a partnership with United Way and AARP. And that is an Iowa-specific 211 partnership. So you could call 211 and get a navigator, a concierge, if you will, to help navigate

35:15some of those resources. The other piece that I, the last piece that I would say is, as we've talked caregiving is so different for each, each person. And many times caregiving aligns with a disease or a specific health challenge that someone is dealing with. And so connecting with the the disease-oriented organizations for us, it was the Alzheimer's, the Alzheimer's Association of Iowa that became a really good resource for understanding some of the specifics of caregiving related to dementia and Alzheimer's. You want to go next, Harlia? Sure. I think a resource that everyone has closed at hand, but is a little, it takes a little more persistence, is actually the healthcare provider that your older adult parent may be seeing. To begin asking there and keep asking and not stop asking to say, you know, is there any psychosocial support in this practice? Is there in this larger healthcare system? I want to talk to a social worker about the resources that are available to my

36:20parents. I want to see what they're qualified for. And as I say, it may not be the first clinician that you talk to. It may need to be, then if you get the responsible, I'm not really sure, then who do I need to talk to here? And then you remain persistent and you will snowballing, you will find someone. I know I'm part of the University of Iowa healthcare system. Most of the practices that treat primarily older adults do have these kind of resources. Unity Point is similar, Mercy One system, but sometimes you have to ask more than the first person because the first person may be like we don't have that. I'm really sorry, but keep asking. See you. So I also tried that and mom and dad had the same gerontologist who had been with them for years and she's wonderful, but I would say that although I did that persistently and we had a good relationship,

37:22those folks are so stretched these days. There are very few gerontologists, the social workers who work with them are super stretched with everyone. So strangely, my secret best source was the the the woman at my parents church here in Iowa City who is the person who visits all of the parishioners who are sick or in nursing homes. And we had her over and we're like Joyce, where what do you think are the best nursing homes for dad now? Like we had no idea. There's so much information out there. I had no time to come through all these wonderful resources that are out there as Michael said. So definitely it was the real local personal connections of the the woman at the church who has been to all the nursing homes and she's like okay we recommend

38:24this and I've seen them. Yeah. She knew it. So that was my secret source. And I want to ask you because you mentioned earlier that family caregivers are expected to provide the kind of highly skilled nursing support that somebody who trained for years. So if you're in that situation, if your parents or someone you love is being discharged from the hospital and you know that suddenly you're going to have to physically take care of that person, where do you turn for resources to develop some skills at least get some advice about that? Absolutely. I think the the piece that's really important and that actually SEAL has lived out very well is that issue of self-advocacy. To do not just go along to go along but to ask those questions to and then to keep asking them and the community resources, the informal resources are actually we've studied this are stronger.

39:27than the formal ones. There you go. Exactly. I'm making proof of that. Exactly. The hive mind is real. You know but for example the classic is you get the call your parents been in a hospital they're being discharged. There are discharge planners there and if you self advocate to say I'm not taking them home until I am given more help. But I think that if more family caregivers in a sense rise up and say you can't just dump somebody on a Friday afternoon. You can say I would they need to go into rehab. Exactly. But people don't know to ask for it. I mean if you say they need to go into rehab that doesn't necessarily mean that their insurance will cover it. Does it? Medicare. This is where Medicare does. Yes. And so it really is an issue but you sometimes have to use

40:28the right words. There you go. There's certain things that they can code for so that Medicare will cover it but working with you know a discharge planner. These are the codes that we have to learn to advocate for our parents. All right and then they're not in a book. No. You have to. I'm hearing you say you have to make these connections. You have to advocate for yourself and for your loved ones. We're providing that information thanks to this group. Seal Miller Boucher is a member of the Somme Center for a gerontological excellence in Iowa City and co-leader of their adult child caregiver group. Harlea Buck is the Sally Mathis Heartwood professor in gerontological nursing at the University of Iowa and director of the Somme Center and Michael Wagler is the Iowa State Director of the AARP. Talk of Iowa is a production of IPR News. I'm Charity Nebby.