 Good evening. My name is Brent Sockness, and I'm the faculty director for the program in Ethics and Society here at Stanford, an interdisciplinary honors program and minor that's run out of the McCoy Family Center for Ethics and Society. It's my pleasure to welcome you to this evening's panel discussion on the ethical and personal challenges of family caregiving, and to introduce tonight's moderator, Larissa McFarke, or if I'm far left. Larissa McFarke has been a staff writer at The New Yorker for more than two decades. She's the author of a book entitled, Strangers Drowning, Impossible Idealism, Drastic Choices, and the Urge to Help, and of numerous fascinating essays for The New Yorker profiling public servants, jurists, artists, writers, activists, philosophers, and other quirky people, some of whom are willing to go to extreme lengths to take extraordinary or take extraordinary risks to make the world a better place. Before joining The New Yorker, Larissa was a senior editor at Lingua Franca and an advisory editor at the Paris Review. She's contributed to The Nation, The New Republic, and The New York Times Book Review to Slate and other publications. She's an Emerson fellow at New America. Larissa's also a longtime affiliate of the McCoy Family Center for Ethics and Society where she spends a week in residence each January working closely with our senior honor students, helping them to craft their work in progress into effective prose. In recent years she's held lectures for the Stanford community and hosted panels on important moral issues. Indeed tonight's conversation continues and expands the one began last year on the complexities surrounding dementia care, a topic about which Larissa has also written an important piece in The New Yorker. We're thrilled that Larissa is back in our midst and grateful that she's agreed to moderate tonight's discussion on the ethics of family caregiving. Without further ado then, I turn the floor over to Larissa to further introduce our panelists. Thank you so much. Thank you so much for that generous introduction. I wanna quickly introduce everybody. To the far right is Leah Eskenazy who is the Director of Operations and Planning for the Family Caregiver Alliance which is based in San Francisco but operates nationwide and has an extraordinary website which is a great resource for caregivers everywhere. She's worked in the field for more than 30 years with older adults and family friend caregivers in nonprofits, healthcare, government and communities. And she has written a series of articles on caregiving which is published by the PBS NewsHour. Dr. Ranak Trivedi is an Assistant Professor in Stanford's Department of Psychiatry and Behavioral Sciences and she's an investigator at the Center for Innovation to Implementation at the VA Palo Alto Healthcare System. She received her PhD in Clinical Psychology from Duke University and her research focuses on historically marginalized groups, patients with mental health conditions and family members providing informal care. And of course it's that last area of specialization that she's going to talk about here tonight. She's developed technology-enabled programs to address the stress management needs of both patients and family and thinks of them as units rather than discreetly considered individuals. And she'll talk more about that later. And Mary Felstener is received a BA degree at Harvard and MA at Columbia and a PhD at Stanford and she served for three decades as Professor of History at San Francisco State University and as a visiting professor at Stanford, Yale and UC Santa Cruz. She writes articles and books on the study of women of disability and of genocide and she is now working on a sonnet cycle about caregiving inspired by her own experience as a caregiver for her husband, John Felstener who was a poetry professor here for many years. And thank you all so much for being here tonight. So I just wanted to give a brief introduction to how this panel came together. Last year we did a panel on the issue of truth telling and lying in dementia care whether to tell a hurtful truth, for example, or a comforting lie. And Mary was in the audience and she stood up afterwards and she said, and she put this so beautifully I wanna quote it. She said, the big question is putting a person in a care facility. No one wants to be put in one. My husband suspected that I was gonna put him away and he was very angry at me. And that led to a terrible moment where I said to him, could you tell me why you are more important than I am? And Mary realized she said that I would not be able to sustain myself if I were sustaining him at a level that seemed to me humane. I can't say strongly enough how disturbing it was to me that I chose for myself and how little cultural recognition there was that that was a reasonable choice. And I was sadly not able to be at the panel that I was watching this on video. And I thought, this question goes to the heart of everything that we are trying to figure out here in this, in that room last year. And so I wanted to, we decided to build a second panel around Mary's question and we found her and then Rannick and Leah have worked with many, many caregivers and wrestled with the same question. So that's how we gathered these three people together. And the issue of caregiving in Mary's case was even more complex, she will explain further but I just wanted to mention that she herself has rheumatoid arthritis. And so for many years, her husband was a caregiver to her and that experience had led her to write and research, questions of disability in general. And so she has seen this relationship from both sides. And since in her question she was exposing this issue that's so painfully central to many, many, many lives we thought we needed to have her here to talk about it. And just to set the stage in terms of facts and figures, a brief overview of caregiving in America at the moment. For the first time in more than 50 years more Americans are dying at home than in hospitals for many reasons but in part because of changing ideas about what it means to die a good death. But for everyone who dies at home and most, I don't know most but many people wish to die at home there is a caregiver taking care of that person. And there is a notion that in America we neglect our elders but in fact 83% of the help that is received by older Americans is given by unpaid caregivers who are usually family members and mostly women. A 2016 CDC study found that elder female family caregivers who live for more than two years with a loved one who has cognitive decline are doing so at a great risk to their own health. They show up in ERs with heart and upper respiratory problems with immune disorders, with strokes. They may suffer from anxiety, panic attacks, insomnia, depression. Their health is in danger because caregiving is so stressful. Caregivers are often exhausted, isolated and may have no respite at all. And the large majority of caregivers have to take time off work. Many lose jobs or have to stop working altogether. And so they're losing income at the very time when they need money the most because professional help is so expensive. According to someone we also consulted on this panel Paula Wolfson who's the manager of Avenida's Care Partners and an expert in elder care in Santa Clara County just to give you a local example. The cost of professional home care is between $25 and $45 an hour and memory care can cost between 7,000 and 10,000 a month. And because it's so expensive that's why many families are compelled to take on the care entirely themselves. And the expense and scarcity of professional care is such that many people in their last years have to leave the place that they may have lived their whole lives and in order to get help. Because while in cities there is usually care it may be unaffordable and in many rural areas there may be no care options at all. So just to set the stage a little bit. I wanna start with Mary because she is the reason this panel is taking place. And I was wondering if you could just describe to us in your house what led to the point where you asked your husband that question. Both, I mean I wonder if you could also take us just briefly through how you noticed the changes in him but then at that moment when you asked that question what was your life like? What was his life like? What was going on in your house? Thank you so much. I think I'm fairly representative and was fairly representative of caregivers generally. That is, I was in my 70s already when I was a caregiver. I was a fully working person with my own life and the realization that I was going to need to care give just sliced itself into my life and made a turn for me. It was a voluntary turn. I was eager to do it. I cared so much about the person I was caring for but I had no idea what I was getting in for because the question that I arrived at that is the title of this panel was not my daily question. My daily question which is probably what caregivers at any level are saying to themselves all the time is just what next? Now what? What next? And then there's one little block and then you go on to another little what next? You're not really asking a question that is submerged underneath and it was very, very well submerged. The question being why? I think why are you more important than I am which was an actual question that I asked to the person I was caring for, my husband, John. I think that that question can be read as pretty heartless or snarky but honestly I was asking why are you more important than I am? And I arrived, if you can imagine this for a moment a very typical moment in a relationship to people standing facing each other in a bedroom and there's John, he's a foot taller than I am a whole lot stronger both in physique and in will and there's Mary, shorter, less certain of herself and yet kind of crafty because I knew something that he didn't which was that I had already signed him up for a facility which was his nightmare and absolutely against his will and at that moment in the bedroom what he said to me was in great sort of distrust, he said to me don't put me away that was his phrase, put me away and I thought what can I say in return and the only thing that came to me was why are you more important than I am? And the reason why I had never, that question had never flown out of my mouth before was because I think, I don't know if you'd agree but I think it was because the answer was so self evident he needed me, if I was not a caregiver he would not survive, he certainly wouldn't thrive whereas I didn't need him to the same extent that was so self evident that there was no reason to look at the family economy and ask how it was balancing out but in fact, in many families today especially among younger people the family economy is an egalitarian economy and it always was in our household and so the shift in that was a radical change in the family economy which remained completely tacit no one mentioned it, no one thought about it it was just there, I was responsible for everything caring for him, managing hired care taking care of the entire infrastructure anything that had to be done, I did never talked about it, never mentioned it that's just, that's caregiving can I ask you about that actually because this is something that Mary and I talked about and I know that caregivers are often very isolated and I was very intrigued by, Mary told me that she made a decision not to tell anyone at least for a long time in the beginning to spare her husband the embarrassment and also to spare her kids the burden of no longer being kids I wonder if you could talk about that decision if you still feel like in retrospect it was the right thing to do I think it was the right thing to do I don't know if others of you have had this experience but I thought as long as he could get away with it I didn't want to see him humiliated and I particularly didn't want to see him turn from a person to a problem or a person to somebody who had to be careful how you talk to and watch and so on and so forth I thought maybe he would have a life left and my responsibility in that little segment of time before he, even before he had a diagnosis was to try to get him to retire because I thought teaching at Stanford he was, I had seen it in one of his classes he was a literature professor and he forgot Emily Dickinson's name anyway, a sin I thought that would get worse and that in front of students he would be humiliating himself and so I just worked the arithmetic to convince him to retire I never said you're gonna humiliate yourself so I was not only hiding it from others I was hiding it in a sense from him and I would strongly recommend to everyone here the brilliant 2018 New Yorker article by Larissa on the comforts of lying in caregiving I'm sorry, that's not exactly the title what is the title exactly? I don't remember something like that I'm having an abbreviation anyway, it's great but it was 2018 so it was too late for me I was four years into caregiving at the time when I asked that question so I had had quite a bit of experience in the decline of my husband and quite a bit of experience in covering for him so that he could have as much person heard of life before he became a problem and besides I didn't know what kind of problem it was gonna be and so I proceeded on that basis however, because the balance of tasks had changed so radically in our family because it had objectively changed and because subjectively I didn't rise to it I didn't take on all my strength and I just gave up all the things I was doing I stopped exercising which is very serious when you have a chronic disease you can't not take care of yourself but I just did and I would say for about a year you simply could not find anywhere in the confines of my ice box a green vegetable I lived on macaroni and ice cream and just it didn't even occur to me to care my other caregivers would say take care of yourself that was not really meaningful because it didn't seem possible for me I wanna ask, bring Leah in at this point because when Mary and I were talking beforehand she mentioned that one of the sort of revelatory moments was when she encountered an article with the phrase caregiver burden which she hadn't encountered before and didn't know that this was a thing that people talked about and Leah, I wonder if you could explain what the term means and why some caregivers are more vulnerable to it than others? Well, it's an interesting question I was just at a presentation last week where the presenter who was African-Americans said we don't save caregiver burden in our family or our extended family we just don't even use that so it really varies by belief system, culture, geographically but that said caregiver burden and Mary I'd be interested to hear what your perception was but the idea was that caregivers have taken on all sorts of responsibilities that maybe you didn't even intend to do but it just sort of it might have started with a very basic task that you do and then those tasks grow and grow and grow as the person becomes less and less able to do their tasks and there's a equilibrium that becomes it's out of balance because as somebody's needs grow then somebody or something has to start picking up that burden to rebalance and I think we all work towards rebalancing in some way or form and at some point to do that rebalancing I think that's the burden that we take on that caregivers take on to try to fill in for the person who can't do what they used to be able to do and you do it for a whole variety of reasons for dignity, for maintaining independence I would argue Mary and you didn't say this but I think it's the caregiver's dignity as well we try to make our life as balanced as possible and I think that caregiver burden we taken on without even putting a label on it now there's a whole study on how do you rate caregiver burden Steve Zarrett, University of Pennsylvania can I have the right, no he was at Penn State, sorry for anybody who it's but he did a whole study years ago on how do you even measure burden and he, so there's a tool that's used now across the kind of the caregiver or the healthcare even industry to help measure is a caregiver really in burden or not? What are some of the criteria? I'm worried, I'm sorry you asked me that but I don't have it here in front of me but it would be things like are you spending more time on somebody else's needs than your own needs? Are you, when was the last time you went to the doctor for your own healthcare needs versus just accompanying somebody to the doctor? Those kinds of questions and if you rated a certain number then they'd say okay you're experiencing burden which is interesting because a lot of caregivers I used to go into the homes and meet with caregivers sit across the kitchen table and we talk about caregiving issues and I would talk about stress and burden and they say I don't know what you're talking about just like you were talking about Mary it's you just do it, you're on autopilot you just do whatever you can do to help try to again find that equilibrium in your household and at some point it becomes too much and it's different for everybody. As we say and I mentioned earlier when you've met one caregiver, you've met one caregiver when you've met one family, you've met one family and so everybody's measures is a little bit different. Can I ask you about something you said about that because I mean you said something that had never occurred to me when we spoke beforehand and probably has never occurred to many caregivers either which is you said very few caregivers make a plan to stop. Very few people think how much can I do and when am I gonna not be able to continue and I mean it didn't occur to you and I'm guessing you don't know when what's gonna happen. How do you talk to people about that? What do you suggest that they do? How do they even plan for such a thing? Well it's interesting, I'd be interested to hear. I've only met one person who had an exit plan when they entered caregiving and that person said she was caring for actually a former partner and she this person had gotten in a very serious accident and she said I will care for you for one year and then at that time let's reconsider and rediscuss the situation. How many people have ever done that? Whoever has even thought about an exit plan and what I do know about people from my years in working with family caregivers is typically people jump right in. I know I can help you out right now and that is you start without knowing really the whole potential depth of what you're getting into and maybe if you did know you would never go there, right? I mean it's a lot, there's a lot of responsibilities. So in my experience, I find that for the most part most people don't plan. They don't think about planning for caregiving. They don't think about what the entrance looks like, what the middle looks like, what the end looks like. They just jump right in and then they say, well we'll take it a day at a time just like what Mary said. I wanna ask Mary something about that because I mean one thing that helped Mary with that was and she described it as a turning point in her experience was joining a support group, a caregiver group where she was meeting people who were going through the same thing but maybe further on and I wonder if you could tell us why that was so important and there was one thing you particularly told me about that man who came in with a smile on his face which was something you would never have known if you hadn't met him. I wonder if you could explain. I went to a caregiver group. I had the good luck of sitting beside someone who turned out to be one of my best friends, a fellow caregiver. So it was from the get-go, a great experience. But I think fairly shortly after I joined and I was in that group for about three years, I was a caregiver for about five and in this public group at the senior center that was a drop-in group, anybody could come at any time and it was free and it was on Mondays. In that group, one of the male caregivers in the group who had been caring for his wife for a long time, Ben, came in one day and he just looked radiant in some way and he said the thing that I thought would be the end, talk about exit, I mean the involuntary exit moment at least mentally would be the moment when the person you're caring for no longer recognizes you at all and he came in and he said my wife doesn't recognize me anymore and he looked liberated and I could never have learned that outside of a caregiver group and that's simply one instance of the kind of thing that came out of people's real lived experience. Can I just say one thing about caregiver burden because I think that is, I was thrilled when I first saw that that was going to be a public form of investigation and insight that actually it mattered that there was a burden on caregivers. I was absolutely thrilled and I was absolutely dismayed because caregiver burden, like I could pick it up when I get inside the door and then put it down at any point like when I get into the kitchen like a shopping bag, it just was not deeply the right metaphor for the experience of caregivers I knew and my own and I don't know what the proper language would be but I would suggest only medical people can say if this is fair but I would suggest caregiver syndrome so that we begin treating it seriously and pretty soon maybe even get some help in from insurance or government by calling it that. Mary also mentioned that when she was in the caregiver support group that someone would tell some harrowing tale of something that had just happened to them and people would say, you know, you really, really have to take care of yourself and then there would be a beat then everyone would go ha ha ha ha like as if that will ever happen. Like on what planet? Yeah. Ronik, I wonder if you could, you have done a lot of research on the question of what motivates someone to remain a caregiver and how you keep this relationship together because it is so essential to keep the relationship together and stop it from falling apart when there's so many stresses on it. I was wondering if you could talk a bit about the work you've done in that area, what you've found. Yeah, sure. So our work sort of focuses a little bit differently where so much of the research has focused on caregiver burden. I love caregiver syndrome, actually, when my wheels are turning. That to us, or to me, it seemed that we're just kind of creating the reverse problem where we're just focusing on an individual again. Like here's an patient, we're gonna ignore the social system. Okay, here's a caregiver, we're gonna ignore the social system and all the forces that play into it. So our lab, I've sort of come at it a little bit differently which is that something like a chronic illness or a diagnosis, it's something that affects both people, at least two people, or certainly more people, but to keep it a little bit more contained, two people, not in the same way, but also affects both people. And it affects their relationship. And so it doesn't have to be that you didn't have, you were, things were not working out and now this is gonna break their relationship and it could be a partner relationship or other relationships. But it's that if you, just, it's a stressor. It's something new that you're dealing with. And so how do you, as a team, come together or stay together if you're already feeling like a team? How do you stay a team? So we've done a lot of work, we've talked with patients and caregiver dyads to gather and separately talking about who are managing heart failure, lung disease and stage renal disease, cancer, that really serious condition, but not dementia, where, so this is patients who are cognitively able to participate in their own care, which is a very different kind of situation than Ben, who's kind of now feeling kind of liberated poignantly. And what we've found is that some things that kind of cut across a lot of the work we've done to show that the relationship is really important. People talk, when asked about it, people actually talk about that's why they're doing this because the relationship came before the illness came, right? And so that's why they're doing it. For some people, there's a sort of a sense of responsibility, there's duty, especially in intergenerational care. There's love and affection. We don't ever know like love and affection has been motivating factors in caregiving. It's all burden and stress, but there's a given take happening and people talk about it and it's really poignant when you hear the stories and how they connect to talk about these things. And then they talk about each other. There's a lot of empathy people feel for the other person. The patients talk about, they see the caregiver kind of taking on a lot and feeling bad that they wish they could do more. And the caregiver sort of sees the patient not being able to do the things they could do and it kind of hurts, right? And so they really, given the context of this conversation, it's not a conversation people usually have, but when we provide that context, we actually learn a lot about just the foundation of the relationship. And that's allowed us to develop some, a couple of different interventions that we're testing right now. It's either over the phone, one version is over the phone, the other one is over a website, because a website allows people to do things sort of on their schedule and telephone. We kind of need them both together available, but the content is the same. To really sort of talk about how do you take care of yourself? But how do you help the other person take care? Like how do you kind of work as a team? How do you talk about things that you normally wouldn't talk about? You know, how do you talk about why are you more important than I am? How do we create kind of a platform in which these kind of conversations can occur? And even how do we kind of make sure that people are participating in the different care, different aspects of care? So, you know, somebody in the earlier conversation mentioned that they were taking care of, there was like 56 different things that were happening in a day for the patient that they were caring for, right? The parent they were caring for. So who does what? You know, how do we have this conversation say, okay, you can actually take your meds on your own. You don't need my help for that. But clearly you are not able to do, like go to the grocery store and get food. But maybe you can now learn to cook because you never cook all your life. Can I ask you to spell some of that out? Because I mean, one of the things you mentioned was that one of the things that's changing in caregiving is that hospitals for economic reasons are relying more and more on non-medical family caregivers. And I was wondering if you could, because it came as a very big surprise to me. Can you tell some of the things besides grocery shopping and the, you know, that people do? So for example, there's, oh, sorry. Yeah, I've never been accused of talking softly, so thank you. So for, there's things like wound care. So people have big surgeries and they need their, the dressing changes, they need them drained. That's moving to families. I've done that with my own mom after her surgery. Giving shots, certainly things are taking blood pressure and all it's like we've been doing that forever. Medications, people could have, some people have these devices called left ventricular assist devices, which is basically an artificial heart that they carry around. So it's kind of in lieu of their heart's not working. That needs batteries changed. So they're taking care of the batteries, the wound, all of those things. And if that malfunctions, people die. So it's like a huge, there's a lot of burden on that. But the caregivers are doing all that. Giving, there's a class of medication biologics that caregivers are taught how to give at certain times so that they can just do it at home. And I mean, there is economic considerations. There's for the hospital and the healthcare system. The sort of somewhat non-cynical perspective also is that patients want that, right? I mean, patients, if we could figure out a way to have people not schlep up and down to their clinics, like, you know, it's better. So there is more to it than the bottom line for the healthcare system. Certainly that's a big factor. But the question becomes how do we then support and train? The study just came out by Jennifer Wolf's group at Hopkins that was covered by Forbes and a few other outlets of how few people, and I forget the percentage, but something like 10 or 15% of caregivers that they interviewed had actually been trained to do the things that they were doing, right? And that was like all kinds of nursing, toileting, like, you know, taking care of, like when people are incontinent, toileting, dressing, bathing, all those things. They're not really, they're just like, just do it. Well, so there is, as you've outlined, an enormous amount of stressfully difficult and also just ordinarily difficult work that goes into being a caregiver. And so this is, of course, what leads people to think, well, at a certain point they need to be in a facility. I can't cope with this by myself. And Mary, as you said, you were very conflicted about putting your husband in a facility because he really didn't wanna go and you postponed it for a long time. But then you described another stage in your experience where even after he was there, you realized that he probably wasn't gonna be able to stay there. And I wonder if you could explain that because it seems, certainly to me, and I think probably to a lot of people contemplating this in the future, they think, well, that decision is the most difficult thing. And then once that decision is made, then at least the decision is made, but then in fact not. So- No, that's true. And I think many people confront this. People who are in facilities are safe on the whole. They can't get out and wander around. But they are not monitored 24-7 by staff in the facilities. It's not a one-on-one situation. So if this is someone who needs to be monitored 24-7 for one reason or another. And in John's case, it was that he was diagnosed with something I had never heard of, but it's a phrase that's haunted me ever since called terminal restlessness, meaning the loss of the ability to rest, to come to rest. And he had to move from one place to another, just about every 15 seconds. And between those motions, he was likely to fall. So I thought they're gonna kick him out and I'm gonna bring him home because they can't take care of him every time he fell. A facility is obliged to call the paramedics and have them come. So this huge fire truck and sirens and people in these big uniforms would come in and it was very dramatic, very disruptive. And I thought, oh, this facility is gonna stand for this about three more days. And I went about trying to find somewhere else that he could go and I was informed by experts who know about placements, nobody's gonna have him. It's just the liability, it's just too much. And so I called my children and said, he's coming home and we'll try to get full-time care for him at home if we can. Remember, this is a very strong person who could move and when he moved, he fell. And when he fell, he did not know how to get up because he could not cognitively remember what his legs were for. And so when I said, I'm gonna bring him home, my two children, as I think children do, consulted with each other behind my back, of course. And what they came up with or what my daughter insisted on, shocked me. And what she told her brother, and it was communicated to me, was the name of the game now is Mary. The name of the game for two years, five years. I never had a conversation with my children about anything but how's John. I never thought about anything else. The name of the game, the only game was John. And my kids were saying, no way is he gonna come home. It was stunning to me as I think anybody who has asked a question like this, no matter what answer you come up with, you would never reverse the question and say, I am more important than you are if you're a caregiver. You might look for some kind of equitable solution if you could find one. And at that moment, I think when I heard someone actually say to me, and it was within my own family, that I was the one that had to be looked after in this situation, I understood that everything had changed. And I wish that more caregivers were treated to that phrase, I guess you would say, that it really does matter what happens to you, not simply instrumentally, not just so that you can be there to take care of him, but because you are the surviving parent, the potential surviving and capable parent. And you, and that it is an ethical cruelty to children to remove both parents from any capability of being parents anymore or just being existing in the world. So that was another turning moment on that question which I had to then deal with and leave him in that facility and take whatever came with that. Ronik, we were talking about, you're embarking on a study of, I think you're just embarking on a study of South Asian women with breast cancer and the caregiving that arises for them. I wonder if thinking about Mary's story, you grew up in India and you are interested in the ways that different cultures have different kinds of family conversations, different family configurations around these situations. Jumping off of Mary's story, I wonder if you could talk a bit about how that conversation might have been different or how caregiving looks different in a South Asian context or indeed in any other cultural context that you've studied. So I'll start off by saying that a lot of what I'm going to say is probably driven more by my observations of empirical study because there's just not a lot out there. I'm looking at cultural aspects of caregiving, so that's exciting, but we get to do some of the work on that. There's someone aging, but not necessarily illness caregiving. I think one of the things that Mary's story illustrates, and not that this doesn't happen in other contexts as well, is the partner is the de facto caregiver and everybody else kind of is not there unless the partner invites them in, like your children or friends because in your case, you are protecting your husband from so that people don't find out that he's cognitively declining or there could be stigmas associated with other different illnesses. And in a lot of cultures is actually, so for example, I'm from India and a lot of times a conversation is a patient shouldn't be told what their prognosis is because it can adversely impact their, because it'll be down and then that can directly negatively impact their own prognosis, right? So if there's a cancer diagnosis, like let's not tell the person. And this happens, I mean, this happens, I mean, I've heard this so much in our friend's circle of people who are like us. So it's not an education thing, it's not a class thing, it's just called, it's very much embedded in the culture. And so Mary might even in this case, Mary knew more in some sense because of cognitive issue, but it could be that Mary just knows more because people have decided to tell the patient, oh no, there's nothing, it's nothing. Like, you know, it's just like, you just need to, your fever, like we'll just give you some antibiotics, you know? And people are getting chemo and, you know, and they don't know that they're getting chemo. I mean, of course they know they're getting chemo. They're like, no, no, it's just some meds, you know? And it's really kind of fascinating from where we stand in the Western world where it's like the patient is the autonomous person making all the decisions and they decide who knows. So it's completely flipped, right? And so there's extended family who can come together to make decisions on behalf of the patient. And the patient may not even be partied to what decision is being made. And we just went through this with a friend of ours whose mother just unfortunately recently passed away. She herself was a physician, both the parents are physicians and she, I guess suspected she had cancer, but just never got checked out because she was afraid. And so by the time she went to get it checked out, it has already metastasized, unfortunately. And this conversation, the three brothers and wives were having where the people who were living in India with them were saying, let's just not tell her. You know? And it just was like to me, this really kind of just startling to hear these things because I mean, partly I'm embedded in this and how we think, but also just, shouldn't they know what's going on with their body? Like shouldn't they get the choices, know what they're weighing and that kind of thing. So I think in that situation, the things that stand out for me are how, and then inherently how isolating them that becomes, right? Because if you're the one person when it all fought, when the name of the game is John, then Mary's isolated, right? But when the name of the game becomes Mary, there's people showing up to help the kids, friends, whatever it might be. Leah, I wonder if you, I mean, you also drew my attention to how caregiving feels and looks very different in different cultures within the U.S. and has changed over, I mean, you've been in this field for several decades and it's changed over that time. I wonder if you could talk a little bit about both those axes, both different communities that you've worked with and how it's changed in the time you've been involved. Well, I'll start with my aunt, who's 102. She lives in LA and she's got a better memory than I have and she's amazing, it has physical issues. So my cousin, my aunt lived with my cousin for a few years because she got kind of lonely because nobody was, all her friends were dying. And so she lived with my cousin in Los Angeles who of course now, you know, when you talk about your kids, hey, here's my kid, my cousin's in her 70s, right? Just started a new career as a chef. So we never intended for people to be living that long, at least when my parents were caregiving, nobody was living to 100 or 102 or 105, it just wasn't happening. And so there was a different trajectory now, I think. And my aunt finally moved into a senior housing, of the Jewish home in LA at 100. You know, that didn't happen. And so I think, and the reason she did that is because my cousin was going back to work. So it's all flipped in a way. I mean, that isn't true for everybody, you know, in terms of that kind of longevity, but it's definitely happening more often. And so in fact, I was looking at kind of some statistics. So it used to be, let's say 50 years ago that life expectancy was about 70, 70 years of age. And about one, roughly one in 6,000 people reached that. Now, there's about one in, I'm sorry, I said that wrong. Life expectancy now, about one person in 6,000 reaches 100. It used to be that one person in 57,000 reached 100. It's changed just dramatically. So my reason my aunt finally moved is it was causing a little tension in my cousin's home with her husband, right? She expected to have her mom live with her for a few years. She figured at some point she would move on, but that didn't happen. So that's a big difference today. And so people are having to care longer. They're having to be more creative in how they care. They're having to, you know, healthcare is wonderful. And that's probably why my aunt is where she is today. She's had wonderful care, but so that is different today. The, there's increased, I think, I don't think anybody would doubt this. There's increased complexity in healthcare and costs and dealing with how do you even manage that today? I don't know, I'm not the right person to go into detail about that, but I think everybody has had that experience with trying to figure out, why is my family member being let out of the hospital sooner than years ago? They used to stay in a month, you know, used to stay in a much longer time. And now people are, as they're saying, they're being sent home sicker and quicker, right? Sicker and quicker is kind of the mantra. And who is doing that? Just what you talked about, people at home, family caregivers are having to take on those tasks that you never, ever, ever thought about having to do before unless you really chose to do that. So that has changed. And that's diagnostic related conditions. There's hospital financing issues. It's not driven by the caregiving family. It's driven by the external environment. And it's not been, I don't think it's been very friendly to family caregivers. So we end up in an environment that is, is driven by cost and reimbursement and other factors. And it ends up putting a greater burden on the family caregiver. And then we could go on, right? There's radical changes in women's roles, right? Women used to be home and caring for family members. I had a good friend who, she was the designated aunt in their family and she'd go to whoever needed care across the country. She'd care for one family member. When she was done there, she'd find somebody else. She'd care for them. I mean, that was her role in the family. It was lovely. And but there's, we don't have the luxury anymore to do that because it's more expensive, especially in the Bay Area. We need two wage earners. There's more women are in the workplace and that's wonderful. We have that added intelligence into our workspace but it's changed the whole dynamic of assuming that women would be there and do in the work. So that has changed as well. And then just finally, oh, and just to mention, of course now women are caregiving but also juggling parenting and partner relationships and work and caregiving, right? So it's that whole added burden. And then finally, there's a decrease in number in the number of family members. So we used to have a larger number of people who could join in and help provide care. And now if you don't have the social network to help replace that, then it becomes even more isolating and more quickly challenging for somebody because you've got fewer people to depend on to help. So I'll leave it there. Can I add one more thing to one of the points that Leah made that I just want to highlight too. You talked about women working on a home and I think one of the policy shifts and cultural shifts we made is that with each passing, I guess, generation, we as a society continue to devalue nurturing, right? We're valuing, we're not providing, we're not valuing that role no matter who's providing it. So we don't have good maternal paternity policies in the US. We don't have good policies that support caregiving because inherently nurturing is something you should just feel like you should do it. You should just do it because you do it. We don't value it. What gets valued is working outside of the home. So of course if you're in terms of getting wages or getting status in society or whatever your aspirations might be in terms of an elevation or if you wanna be in any way poorly mobile, it means not doing the nurturing parts of our lives. And so we are actually taking that away from us to as people, as humans, as animals who have always depended on that dimension to build communities, build societies and by continuing to devaluate both in terms of financial not having stipends or money or however, as well as just in the way we think about the roles of stay at home parents and so forth. It's really, it's kinda coming to a head now because our policies are built around supporting people who are able-bodied and can go to work and do these kind of things and that's your ticket, right? Then you have like you live in a Bay Area then and whatever, right? And so I think that that, if we wanna take a broader kind of ethical, cultural perspective on this, I think we have to figure out certainly we need to do the policies and all that, but I think we need to step back a little bit further in more long-term to think about how do we bring back nurturing into our life? Because we know, we have really good research showing that when we help people, we help ourselves, right? We're actually helping somebody else is, as I called it, that's a strategy we use to get people to come out of their, to kind of activate them as to do get out of their own head, out their own body and do something and there's really good evidence showing that there's good signs showing that when you help somebody, you actually get, you know, you get, you feel good and it's good for your well-being, but we're taking all that away and we're landing in these positions now with caregiver stress and caregiver burden because we've just kind of painted ourselves in a corner a bit. Absolutely, I think that's 100% right. Thank you very much for coming and thank you to our panelists. Unfortunately, we're out of time.