Death And Autonomy (with Dr. Keren Brown Wilson)

[00:00:01] Someone called me a maximizer and I thought, oh my God. And I realized that, oh geez, that wasn't a compliment. Death and Autonomy. Hello everyone. I'm your friendly neighborhood undertaker, Victor M. Sweeney.

[00:00:29] And this is another episode of Death And, the podcast where you and I get to talk about life, death, obviously, and a lot of other good stuff besides. Our guest today is Dr. Keren Brown Wilson. She is a gerontologist. She's been practicing for five decades. She's the preeminent person in this, as far as I'm concerned.

[00:00:56] She works with older adults in the community at large and even in her own family, which is where her work got its genesis. She's affiliated with Portland State in Oregon and is the founder of the Jesse F. Richardson Foundation, which works with underserved older adults. I think when we get in, you'll find her fascinating and lovely and lively and wonderful.

[00:01:21] And really, what I liked very much is when I first reached out to her, she agreed on the condition we have a phone call. Because she didn't really know what direction I take this podcast. And I had the loveliest phone call and I was holding back as much as I could because I didn't want to give away some of the good juicy stuff. Like our discussion, I didn't want to preempt it and ruin it. I wanted us to discover it along the way.

[00:01:49] And this brings me up to a little bit of a complaint I have. Is it okay if I tell you a complaint, dear listener? It's this. I had an interview with a guy, a journalist, veteran journalist. And this guy sent me a questionnaire before we talked on the phone.

[00:02:17] And I filled out this rather lengthy questionnaire. And then this guy sends me back a script of what our discussion ought to look like when we do finally talk to get information for this newspaper article. And I was really taken aback because, I mean, one, I end up then providing all the information. I provided all the information for the article.

[00:02:48] He didn't drag anything out of me except to send, you know, whatever, eight questions. And then he whips back a script of what our discussion is supposed to be. Like there was no leeway. There was no wiggle room. I found it terribly uninteresting and uninspiring. So I chose not to do it. Or at least not to play along. I'm kind of impish like that. In an episode about autonomy, I like my autonomy.

[00:03:17] And I don't like being told what to do. So, yeah, that's kind of my complaint. And then I got thinking. I got thinking about this podcast. And I was wondering, am I doing it right? Am I doing it right? Dear listener. Because I don't really prepare very much when I have a guest. Like I said, I had a phone call with Karen before this one. Most guests, I do the most cursory search on them.

[00:03:46] I don't look up anything really personal. If they've written a book, I'll probably read it. But outside of that, I try not to consume too much because I don't want to lose the magic. One of our previous guests on the show for death and woodworking, my friend John was a journalist before he became a woodworker. And we were talking about this issue just earlier today. And he's like, nah, nah, if you lead too much, you don't get the magic.

[00:04:15] You don't know where the conversation is going to go. And at least for my part, I really like that. Does it take some thinking on my feet? Yes. Do I have to be fully tuned in? Yes. But I don't know. Maybe I'm doing it wrong. Maybe I need to over-prepare and lead the listener with very rote questions that they themselves give me.

[00:04:43] I wish we'd had the camera rolling when we started. We were talking about cats for the first five minutes of the show before we got too far. Because I have a new kitten. And her name is Dolly Parton. After the late, great Dolly Parton. Who we like for her music, really. But really, we like her for her literacy efforts. I think those are more important in the long run. Anyway, enough of my complaining.

[00:05:09] Because what I have found is that Dr. Karen and I got to do some wonderful mutual discovery. I got to talk and share some stories. She got to talk and share her thoughts. I really loved to, when we were on the phone, she goes, Victor, I don't know, but can we call it death and autonomy? And I haven't yet had a guest name an episode. Usually we just kind of see where the thing goes, you know, like I was just talking about.

[00:05:38] We see where it goes and then we pick a title. But God bless her, she picked a title and boy did she nail it. Because she told me that these are the things that have been swirling in her head. And now, quite frankly, they're swirling in mine. I'm kind of seeing it everywhere. I hope by the end, dear listener, they swirl in yours. It sounds kind of nice, doesn't it? To have ideas of autonomy and safety swirling in one's head.

[00:06:07] Dreams of sugar plums and all that. I'm really glad you're here. I'm glad I have the show. I've thought about hanging it up sometimes because, again, I don't know what I'm doing. I'm just winging it. But part of the show that I appreciate, and I say it all the time, and I do mean it, is I really love when questions come in. Sometimes I answer them in YouTube comments. I had somebody send me a Facebook message. I'm barely on Facebook. I don't think I've updated it in about a decade.

[00:06:35] But I had someone send me a question and, you know, what the hell. I'll answer it. If you have one and you want to throw me a few bones, you could go to Cameo, go on the app, ask me a question there. You could send me, it's like six, six, seven bucks, you know. And that's good for me because I haven't really found out how to monetize this stuff because, well, let's face it, I'm an undertaker. I'm not a businessman. Let's get to the questions.

[00:07:03] I have some lovely little sound bites in the grab bag today. So let's see what they are. Our first voice memo is from Tyler. Hey, Victor. My name's Tyler. I'm just a funeral assistant over at an SCI location out in Colorado. I've been doing this for almost exactly a year. And in just a few weeks, I will be starting funeral school.

[00:07:33] It will be remote. So one thing that I'm really trying to figure out is how to get that in-person experience considering the magnitude of prep work, you know. Like, I don't want to mess up my first incision on someone's 95-year-old grandma, you know. And she's got four generations that are going to be going to the funeral. Parking lot's going to be, you know, just completely full back, front, everywhere. You know.

[00:08:00] I worry that if I try something out and I mess up, it's not like some sort of video game, you know, where you can press reset. But what's the first sort of stepping stone, you know. Like, I've done some baseball stitches. I have helped, of course, dress people. I've done a little bit of makeup on some folks that had discolorations. But, you know, where do I go from here? Because I need to get that in-person experience without messing up crucial prep work. That's really the crux of my situation. Dang.

[00:08:30] Okay. That is a great question. Tyler of One Year in Funeral Service. Just know that I've been in exactly your shoes. One thing, when you're starting mortuary school, they will more than likely, of course, Colorado. Colorado's known for the worst rules in the country for mortuary stuff.

[00:08:55] But when you start mortuary school, they will provide to you a proctor or like a mentor, essentially, where you're at. And so you actually, most often, you will have a certain number of embalmings, a certain number of arrangements, a certain number of house calls or whatever you'll have to assist on in order to receive your degree. So the nice thing is when you have someone who is your proctor, your mentor, you're going to be able to do that alongside them. So you said you've done a baseball stitch, right?

[00:09:24] That's closing up an incision. That's good. Okay. You're going to have to get good at that, right? Which is great. But you said you have fears of messing up the incision. And honestly, every one of us will have those fears. I remember the first body I did alone. I was sweating. I sweat through my shirt. I sweat through my pants. I was just wet. And it was not from the temperature.

[00:09:54] It was just from pure nerves because you're right. Embalming is one of these weird things where you only get one shot. Okay. It's not like you can grab someone else's grandma and swap it out and try it again. No, you only get one try. And at least for those first steps, you've got the training wheels on. You've got another undertaker there to help you. And here's the thing. You will make mistakes. You will open that carotid incision and you'll cut right through it. I promise you.

[00:10:23] But the thing is, there are always ways to fix that. There are always workarounds. There are always ways that you can try to correct your problem. But here's the catch. It will take more time. And so as long as you give yourself a little bit of grace and you say, okay, well, you know what? If I screw up, it's going to take me another half hour to fix that problem. That's fine. And you'll notice too that right when you start, you go slow. You'll be so slow. And I'm still slow because I like to work slow.

[00:10:53] But you'll find like, oh yeah, I'm going to inject at 25 PSI instead of 50 because you just want to see the results happen slowly. So you know that you've got it right. So no, it takes time. You'll have friends and mentors to help you along the way. And yeah, I mean, I still have hard cases where I look at it and I go, how the hell am I going to make this right? Or I have somebody who's been embalmed somewhere else and the trade embalmer says, yeah, everything's fine.

[00:11:23] And they get back and it's like, yeah, shit, this is wrong. But here's the thing. You're the professional. Even if you're a young professional, you're the professional. And you can carry that on your shoulders. And you can stress out about it. And you can maybe lose a little sleep sometimes. But we always find a way. We always do. Because it's always there. Be not afraid, Tyler. And I'll be thinking of you.

[00:11:52] Thanks for the question. Our next question comes from Giovanna Cantu. Hi, Victor. I wanted to ask, if for whatever reason I were to pass, either suddenly or of old age, would my cats be able to attend my funeral? For example, I don't want them to be left behind thinking that I abandoned them.

[00:12:16] I want them to be able to grieve in the way that animals do, to at least know that the reason why their owner isn't coming home to feed them is not out of abandonment, but out of simply put, death. That is a really sweet question, Giovanna. Thank you. So, yeah. You rightly note, animals do grieve in their own way. And we don't always understand it. We see it, but we don't. It's hard to understand.

[00:12:42] But I have witnessed it many a time where they, let's say we take someone out of their hospice bed in their home and the cat jumps on top of the cot as we leave. And so I've learned, you know, really the trick is just let it happen. As the funeral provider, whatever. If we're wheeling it out and the cat's on top, no biggie. Maybe someone from the family takes the cat when we get to the van. Dogs, they know death. Believe me.

[00:13:11] Believe me, they know death. And so oftentimes when we go into a house with a dog, I just did last week, I usually just crouch down like really low to the floor and like give them a chance to sniff my hand before I even think about approaching the deathbed. They can get a little possessive, you know. So, yeah, I do try to give pets a lot of attention when I go to a house, even if I get all covered with cat or dog hair, whatever. It's, you know, hey, it is what it is.

[00:13:40] As far as animals at funerals, I actually have done this, not like, you know, not at the front of a church or something. But if we have a visitation time, I will often have families bring in the dog, bring in the cat, whatever that looks like. And we just let them have a sniff up front, whether they're embalmed or unembalmed. Because I think you're right. They're creatures with souls. They have needs. Will they be able to rationalize that so-and-so is dead and they won't be able to feed me?

[00:14:10] I think that's a different question. But they do experience death and they know it and they sense it. And I think being a little sympathetic to that is good. So, yeah. Yeah. As families, as family dynamics change and we have fewer children and more pets, this is going to be something that we are going to need to be in tune with as funeral providers. So, really good question. Love it. Thank you, Giovanna.

[00:14:42] As we get into our episode today, I just want to reiterate how awesome Karen is. I know I sound like a broken record. Okay. But she's the professional here. And what I find really interesting is she's struggling with a fundamental issue. It's not just an issue in gerontology and assisted living.

[00:15:07] It's not just an issue with funeral service, right? With wishes of the living and then the dead. This is an issue inside each and every one of us. We want autonomy. We want freedom. And we want safety. We want security. I don't know. Is the answer balancing it unsteadily? Is the answer letting go of some security and some freedom?

[00:15:32] But I love that we can discuss this meta issue together with the woman who founded, discovered, created, if you will, assisted living. What a pleasure. What a gift. Here we go.

[00:16:03] Our guest today is Keren Brown Wilson. She is a magnificent woman. We're going to learn more about you as we go. You are involved in some nonprofit work. But the reason I've reached out to you primarily is because, at least to my mind, you are the foundress of assisted living as a concept. Well, maybe not as we practice it today. We're going to get into that.

[00:16:31] But at least as an idea, you were there on the cutting edge. Karen, welcome so much to the show. Thank you, Victor. I'm glad to be here. So I first came across you reading Atul Gawande's book, Being Mortal. And I finished the book and I set it down. And it was about 1030 at night. And I said, how can I find this Karen woman? And so I searched and searched and I sent off emails. And, Lo, you answered. And thank you.

[00:17:01] Thank you for doing that. Can you tell our listeners here, how did you come up with the idea or rather, rather, was it something you dreamed up or was it born of necessity? Well, it's sort of a combination of experience and opportunity. I was a graduate student in gerontology. And my mother had a stroke.

[00:17:30] And she was only 59. And she wanted to live a life. She didn't want to live in a bed. And I hadn't told her at that time. I had decided to become a gerontologist. And she said, well, why don't you do something to help people like me?

[00:17:52] And at the same time in my graduate's work, I was learning all kinds of theoretical concepts that made older people more functional, like autonomy and independence and choice. And so I took that academic learning, particularly one called environmental press, which says you create an environment that maximizes a person's ability to function. And I thought about what my mom said.

[00:18:24] And then the happenstance was I moved to Oregon from Washington state. And Oregon was at that time experimenting with something called flexible intergovernmental waivers. Basically, they were trying to figure out how to do long-term care cheaper. Now, they would never say that. But that was ultimately one of the goals.

[00:18:49] And so I was fortunate enough to have a theoretical constructs, a mother who was very vocal about what she wanted and what she needed to be a human with disabilities and an environment that was longing for an answer to a problem.

[00:19:13] And so I set about trying to figure out how to create an application for those constructs that would meet what my mother would like to have for herself. And that's essentially how assisted living was born. So your mom was kind of the brick and the mortar right away. Yes. My mom was a remarkable woman. And she was tough.

[00:19:42] She raised us after my father died when I was young. And she really believed that her kids could do anything. Yeah. Tell, what's your mom's name? My mom's name was Jessie Freelove Richardson. That's a beautiful name. And the foundation that I operate is named after her because she was my inspiration. But you don't call it the free love. No.

[00:20:13] That wouldn't be a bad idea, right? That's wonderful. No, I love that. So then did you essentially end up brainstorming with your mom about how do we provide you services? And then how do you – can you balance agency and safety? Because I guess that's – we talked on the phone a little bit before this.

[00:20:38] And that was what we kept circling back to is balancing freedom and safety. Well, that's true. I mean, all of the elements really actually are quite difficult to actually create an application for. And part of the reason that they were difficult to create an application for is because of the conflict between the concept of safety and the concept of autonomy.

[00:21:06] I'll give you the example of the environment. So my mom basically lived in a bed. She couldn't have her cat. She had to go to bed at a certain time. She had to eat at a certain time. She had to get up at a certain time. And, you know, that didn't sit well with her. It kind of sounds like prison a little bit. Well, for some people it is, right? And at the same time, you know, she wanted a kitchen.

[00:21:36] She wanted her cat. She wanted the temperature to be what she wanted it to be. So all of those things really played into my concept of an individual apartment that people lived in. That they could lock their door. That they could change their temperature in their apartment. That they could have their pet. That they could eat when they wanted to if they didn't want to go to communal meals.

[00:22:01] But all of that was really concerning to lots of people. Because what if something happened to them? What if they left the stove on? What if they had the thermostat turned up really high and opened the windows? What if they fell in the bathroom? Yeah. And the door is locked. Yeah. And the door is locked.

[00:22:23] So, you know, in every area, the issue that really played into a lot of the thinking about what to do was safety. Because I think I told you this in our conversation. The most meaningful one-liner that anyone ever gave me was a fellow gerontologist, Robert Applebaum, said to me, What we want for ourselves is autonomy.

[00:22:52] What we want for the people we love is safety. Yes. And so, therein lies the crux. And by the way, not only just for older people. For people of all ages. Look at what's going on with children today. I was going to say. I mean, I look at, you know, we're in October as we speak. And I'm lucky. I live in a small town. We still do trick or treat. But my brothers are in a bigger city. And they trunk or treat.

[00:23:21] Because it's safe. Right. You know? And that's really low stakes. That's not life or death or anything. Right. But we do struggle balancing even that, don't we? It's a real struggle. It's a real struggle for people of all ages. For people of all abilities. And people at all stages of life. So, you know, it's not just when you're old that this issue becomes a point of conflict.

[00:23:50] It's a point of conflict for anyone that society views as potentially vulnerable. As rightfully we want them to be. Right. And then we end up with, I suppose you have, you almost have two ends. But the end we see, I feel like most of the time, like especially as a young parent, you know, I'm a very laissez-faire parent. I'm like, let my kids fall. Let them get hurt. I don't really care. You know? And then you have the helicopter parents who are the opposite of me. Right.

[00:24:21] And they, right, virtue is found in the middle, right? The via media, the middle way is probably the most virtuous way when you break these things down. But I suppose when it comes to seniors, you're not just dealing with a skinned knee. You're dealing with a broken hip, which is a very different thing. Well, or worse. And when you throw into that, I mean, with children, you have the issue of non, you know, they're not fully developed cognitively in decision making.

[00:24:50] But that's also true for older adults who are used to making decisions, who may be experiencing some difficulty with their cognitive abilities, you know, whether they're mild or severe. So you have a child is trying to learn to be autonomous. An older adult is being asked to learn to be not autonomous.

[00:25:13] And that becomes really difficult for them and for the people that love them or for the people who are either legally, morally or socially responsible for them. And so, you know, we have this dilemma about, okay, even if I believe in the concept of autonomy, not just for myself, but for those I love. Or if I am responsible legally or morally, how do I manage that?

[00:25:43] What do I do about it? I would say, I always tell people, well, first of all, make sure you're clear about what you want when there's no question about your competence. Sure. Right? That's really good advice, actually. Right? And that goes to all kinds of things. And actually, we have some instruments that vary from state to state that help us do that. We have durable powers of attorney.

[00:26:12] We have estate planning. We have... Healthcare directive. Healthcare directive, advanced directives. We have all sorts of instruments that are available to us, some for no cost, that vary a little bit from state to state. But the concept is there. Use them. My advice to older people is use them while no one's saying, are you sure you really want to do this? Hear that? Hear this, dear listeners.

[00:26:42] That's actually really good advice. Because I actually sit... So I sit down with a lot of people that pre-plan their funerals. And I've done all the pre-planning in my funeral home for 12 years now. All of it's been on me. And I do a lot of healthcare directives with people. If they know what they want or they know what they don't want, or maybe they have a complicated family situation, it's like, this is... Like, let's fill out most of this here. You take it home. Think about it. We'll get this signed and get it official.

[00:27:11] Because you wouldn't believe how much trouble just a little bit of planning in advance can save. Yep. The thing... I would guess... I could be wrong. Correct me if I'm wrong. I would guess that it's easier for... Let's just say it's the senior citizen, the person who's wanting autonomy. It's easier for them to tell you what they want. Really, I think the conflict probably comes with you and me on the outside wanting safety.

[00:27:41] Would you be right? It seems like a very one-way street to me. That, it's really true. And even when people's abilities diminish, it doesn't mean their emotional feeling about being independent or being autonomous changes. So, it does for some people. I mean, you know, humans are not perfect. And so, just because we intellectually understand that this might not be the best thing for us, doesn't mean that we're emotionally able to say,

[00:28:12] Okay, I know it's really stupid to climb up to put those Christmas tree lights up. Right? Oh, yes. So, there is that. That part of it is that as our abilities change, that doesn't mean that our ability to navigate that change emotionally comes easily. Or at all.

[00:28:36] Well, as I've been thinking about it since we first talked, at least on my end, like if it's kind of a one-way street, because it's easier for those wanting autonomy to tell what they want, harder for you and I to accept it. If we grant that, part of me was thinking like, how much of this is in me? And being willing to just like, let go of the idea of safety a little bit.

[00:29:00] I mean, and this sounds like very reckless, but I was thinking there's a quote that I'm going to get wrong by Benjamin Franklin, right? And he says, those who would give up liberty to purchase temporary safety deserve neither. Right? And so, there is something about like, as a parent all the time, I tell myself like, Victor, just relax. If your kid gets hurt, so be it. Um, but it's much harder for us to say that about our grandparents.

[00:29:28] Well, I, I, I have three things that I keep in mind, even for myself, because I'm not exactly a spring chicken. Right? I wasn't going to say anything, Karen. Can you tell us how old you are? I'm 78. Yeah. And so, I have what I call the three M's that I try to, uh, practice for myself and for those I love. And also to talk about when I get the chance.

[00:29:58] And they're called manage, mitigate, and mediate. I'm writing these down. Okay. Uh, lay, lay them out for us, Karen. So, when there's, when there's risk involved, and that's, that's really what's at the crux of the dilemma between safety and autonomy is risk. Risk of harm. Risk of, of serious harm. Risk of death. Risk of, of, of exploitation.

[00:30:28] I mean, the, the risk is around us every day in all sorts of forms. I mean, we're being alerted all the time to, ooh, be careful, be careful, be careful. Right? And, and, you know, so the, the, the, the crux of the issue of the conflict between safety and autonomy is risk.

[00:30:46] So, in my mind, whatever we can do to address risk gives every party involved an opportunity to think about how to balance safety and autonomy. So, in the first case, like manage, that's, um, I should have started with a mitigate because that's the easiest. I'll start with mitigate.

[00:31:14] Mitigate risk means, okay, you're always reading safety tips. Remove those throw rugs. Right? Lock your doors. Don't turn on, you know, if somebody starts asking you to open a link in your computer, don't open it. So, we're always being alerted to safety risk in every domain of our lives. And we can remove those risks permanently. I take the rug away. I delete the email.

[00:31:43] I don't answer the spam calls. Whatever they are, I simply, I mitigate it by removing it. Okay. That's easiest. Right? Some things are no brainers, so to speak. Right? Yeah. Oh, yeah. And, and this is like very doable for you and me. You know, I, I child, I child proof my house. So, my kids can't crawl on the cabinet where the food processor is. You're mitigating the risk. Yeah.

[00:32:13] Right? The second M is manage. Manage is more difficult because you know about the risk, but you don't want to necessarily, it's the kind of risk that you don't want to get rid of it totally. Let's take driving, for example. Sure. Driving. Oh, well, you know, you shouldn't be driving at night. You have night blindness. You don't see so well. The weather's bad. Don't drive when the weather's bad. Don't drive at night.

[00:32:42] So, you reduce the risk. Right? So, when you manage it, you're reducing it. You're not removing it. I'm not going to give up driving because you say I have bad eyesight for night driving, but I might give up driving at night.

[00:32:59] Or, or another one might be in you managing your risk is say, let's say that you feel like you want to, you want to go on a dating site. Yeah. Okay. Well, that's kind of risky behavior. Because you don't know. So, what are, you know, they tell you the safety steps to take. Don't go, you know, meet in a public place the first time. Right. Yeah. You don't want to get catfished, right? Yeah. Right.

[00:33:29] But you also want to date. So, you also want to date. So, you're saying, okay, well, I'm going to manage this risk by reducing the ways that I could be adversely impacted. Sure. I or somebody that loves me. But usually this is a function that falls to the person. Okay. So, this is, this is the person wanting the autonomy then. Really doing. Right. Normally. Not always. Normally.

[00:33:57] Now we come to the situation, the third M, which is mediate. And this almost always involves the autonomy of wanting person and somebody else. Ah, there it is. Yep. And that is the really tough one. Right. Because you're already in conflict. Just, just the nature of it. You're going to be in conflict before you even start. Yeah. Right.

[00:34:22] So, I'm saying, I'm saying to my husband, no, you're not going to climb the ladder and put up Christmas lights. He's saying, but I've always done it and I'm perfectly safe. I say, I don't care. You know, the doctor's told you not to do that. I'm telling you not to do that. I'm looking here and I've seen you, I've seen you wobble when you get up on the step ladder. So, we're, we're at an impassable point.

[00:34:52] And then, and then you, you either, you either avert to one of the two, right? So, how do we get it? How do we find a solution to this? Let's have somebody else put up the lights. You climb, or let's put the lights lower, or let's, let's have two people standing on either side of the step ladder while you climb up.

[00:35:11] I mean, we try to find a solution that satisfies the person who wants autonomy and the person who wants to reduce that autonomy. Sure. Hmm. So, I, I have a little story for you. So, I have, I know a lot of old folks. I mean, it's kind of my demographic, really. Yeah, mine too.

[00:35:34] Yeah, I mean, and like, I, I was at my son's football game the other day and I knew like 10 adults and didn't know the rest of them, but all the grandparents I knew. You know, that's kind of how this works. But, um, I, I have a friend who, um, his grandma died. And before she died, she told her husband, she's like, you know, I really think our grandson, Zach, should move here with his family. And her husband's like, yeah, yeah, yeah, yeah, yeah. Right. You know, typical kind of senior citizen move.

[00:36:04] And then a couple of years later, um, he's starting to slow down and he's like, you know, what did, what did my wife tell me I should do? And so he calls my friend, Zach, who has a wife and six children. And he's like, and he's like, grandma, and he's like, grandma thought maybe you should move in here. And Zach's like, well, I, you know, I don't know. And he's like, look. And so here, here's the deal they struck. He said, I want to live here.

[00:36:33] Like, I'm going to move into the guest bedroom. I want you to feed me. I want you to let me die here. And if you can do those simple things, if you can feed me, let me die here. Let me live with you. The house will be yours. And so Zach's like, well, that, I could do that. Like, I could do that for my grandpa. So I went over there. We went over for dinner just a little while ago. And it's a bunch of little kids, brand new baby, you know, 85-year-old grandpa.

[00:37:02] And he, and I, so I'm talking to him. And of course, I am not afraid to talk about hard things. So like we're talking about his wife's death. And, and he looks at me and he goes, Victor, I, when she passed away, he goes, I never thought I'd be happy again. And he goes, and I wasn't happy. And now my grandson and I have six great grandchildren that live here. And he's like, is it loud? Yes. Is it chaotic? Yes.

[00:37:31] He goes, but I, I feel like I'm young again and I'm happy. And like my grandson's wife makes me meals that I like actually. And like, yeah, he, he had, he had to move into the guest bedroom and he had to move all of his old stuff into the guest bedroom. And, you know, like great grandkids are being procreated in his old room. So like he's, he's letting go of some things.

[00:37:56] Um, but it was amazing just to hear him like, like get teary and like almost weep with happiness that like he's living again and he can stay in his place. And, uh, and I, I, I, I really love that. But what I, what I recognize is I know other families where they try to bring 85 year old dad into the house and dad and the son fight like this.

[00:38:20] Whereas dad and the grandson, like they don't, they don't have, well, the history they have is just happy actually. And, uh, I, I was thinking like that makes all the difference. It does. And that's part of the difficulty in mediation, because if you don't truly, if both parties don't truly agree, then it almost never will be, it almost never works. And so that's the tough part.

[00:38:48] And, and the mediation even gets tougher when you live in a regulated setting, right? Yes. Because, um, even though, even though people who are responsible legally and by licensure for quote unquote, the safety and wellbeing of the people who live in, in those regulated environments or even non-regulated environments come to think of it. Yeah.

[00:39:43] And so that's the problem. Yeah. If something bad happens or maybe not even if something bad happens. Right. State, state can walk in and tell you no, no slippers, only moccasins. Right. And, and so this is one of the real dilemmas, for example, that I feel today with assisted living and other regulated environments is that.

[00:40:03] The concept of autonomy is, is very much talked about, but the actual ability to execute without, um, because of the difficulty in mediating a plan that's agreed to is so difficult that the autonomy then actually becomes the worst problem because you have no way to mediate the behaviors that are almost certain to cause a problem.

[00:40:32] Well, do you think maybe part of the reason is because the plan you're agreeing to is, is a stock boilerplate sort of plan? I suspect that it's because it takes more skill than many people have and more commitment than many people have to actually work it through. And you can't just be a two party.

[00:40:56] It can't just, well, it can't actually ends up being a four, a four party transaction in these situations. Who are they? The family or the responsible person. If that's a, whoever that is, the person who access the personal representative of that person, particularly when dementia is involved or cognitive impairment is involved. The person, the regulator and the provider.

[00:41:27] And then you, I mean, it can be a real circus. I have a lot of friends that are in assisted living and like, there's one, one guy I know that like is basically a mobile and they're still, they're still in the assisted living. And they, you know, we say, right.

[00:41:50] Well, they probably shouldn't be because the, the staff has to do more than maybe what they signed up for with some of the other residents. But I also know this guy is like a really good baker and he can still do that. And if you put him in the nursing home, that's, that's gone. Be tough. Yeah. Yeah. So you, you, you mentioned a word. I want to pick this apart.

[00:42:17] Um, and you mentioned, well, we're looking for people's wellbeing. And, um, I don't know. I, I, I've been just kind of churning it in the back of my head, but there's a great difference between wellbeing and something like safe being. Like we, we don't really talk about safe being, but it sounds to me like we could almost switch, switch the word. Um, because I think wellbeing is, is very different.

[00:42:46] Like my, my grandma lives alone, uh, of her own choosing in her little town, in the trailer that she, uh, lived with her aged parents. Like she nursed them into their nineties in this little trailer in Michigan.

[00:43:01] And, uh, part of my grandma's wellbeing is that we leave her in the middle of nowhere, Michigan, where she's happy, where she has her friends, where she has her little church, where she has her sewing circle, where she has the guy who traps the rodents that move in under the trailer. Like that, that's what she wants. And so that's part of her wellbeing. And we've had a lot of discussions in my family, especially as she's, what is she? She's, she's 85 this year.

[00:43:27] And, um, my, my mom has been like, well, maybe we should move her where we live and where my parents and my brothers live in the same town. She's like, maybe we should move her up here. And I'm like, yeah, that's, that's all grand. But like, I don't, I think she's just happier being a little unsafe and a little reckless. And, uh, and so she stays where she is. And I think everybody kind of understands it now that like Mimi's not going anywhere.

[00:43:53] And, um, you know, whether she becomes a danger to herself or somebody else, like I know my grandma, this is, this is her, her mode of wellbeing is like a little on a little on the edge. Yeah. Well, that, that's the, that's the dilemma.

[00:44:07] Um, that's the, that's the other paradox is your individual autonomy versus the social autonomy of the, of the, of the larger collective group, whether you're in a, in, uh, by yourself with maybe just a spouse or a pet, um, or whether you live in a community. And that's another, that's another whole story about how to balance individual versus group rights. Right.

[00:44:32] Um, because my autonomy might really impinge on the, the, the happiness and the well and the wellbeing of, of my friends and neighbors and my spouse or my significant other or whomever my children. So that's, that's a whole different story. But the reality of it is that if, if we can't, if we don't really give this some serious thought, the term wellbeing is meaningless.

[00:45:01] Yeah. Right. Because the wellbeing, um, we've, and, and metrics are really important. I mean, after all, I went to college for 12 years. Better you than me. Right. Well, I loved it, but not, not for a career. Uh, although it felt like a career while I was doing it. Um, it was so long. Um, you know, the, the, the concept we have tried to create constructs to measure wellbeing.

[00:45:29] And the problem with that is that wellbeing, um, we, we have a really hard time measuring a lot of intangible things. Well-being can be, did you get, did you get access to healthcare and get a health issue addressed? That can be a metric for wellbeing. Well-being can be, did you, did you have adequate nutrition to keep you alive and feeling satisfied that you're getting enough to eat?

[00:45:56] A wellbeing can be, do you, you know, do you have the ability to get things that you need done, done? Like getting dressed or taking a shower or, or, or taking care of your pet, whatever it is. Right. But it's harder, it's harder, much harder to address those more elusive aspects of wellbeing, like autonomy, like happiness, like loneliness.

[00:46:19] And we've been trying for as long as I've been a gerontologist, which is almost 50 years. Right. To figure that out better. And, and it's really, really hard. And then when people try to put that into regulation, then it becomes really even more difficult. Right. Well, I, I think about it in terms of, so I'm, I'm in a very small town. I have 1600 people in my town.

[00:46:45] Um, and there are folks like, just for instance, there are folks that drive that should not drive. Right. Um, but we all know that when Wally comes down the street in his Odes mobile, like you just pull over. Like I've, I've done this. Like there are people that if I, oh, if, if I, if I see Corinne's burgundy Buick, I just pull over and I let her drive by. Cause God knows she's coming down the middle. Right. Um, and the thing is like, she has a loop. I know where to expect her.

[00:47:13] You know, you go to the grocery store, like don't park anywhere near where she is. She's going to hit you. Um, and like this, this is part of the inconvenience factor. Like it's inconvenient to have people who are, are limited in some way, uh, want their autonomy. But if everybody in my little town knows like, oh, well we just look out when she comes driving. Like we can live with that. Um, or my neighbors across the street are getting older and I love them dearly. Uh, Chuck and lovey, uh, are their name.

[00:47:43] Just, I just adore them. Um, and I realize at a certain point, um, a lot of their care is actually going to be. It's going to fall to me and to my wife. Cause they, their kids don't. Yeah. They don't live near here. And I'm, and the thing is I'm gearing up to do that and I'm fine with it. I'm fine with it. That it's, it's something that, that my family, because we live where we live are just going to have to fill in the gaps.

[00:48:08] Um, and I, I think, you know, maybe part of filling in that risk gap is just like me and everybody else learning to live with the inconvenience of old age or, you know, extreme young age. Like there's, we're all, I have this belief that like, we're all inconvenient and we just need to embrace it. And so to be mad at someone for being inconvenient or be, be, have a pity party because it's not convenient for me. Like what, what a, what a waste of time and energy just lean into it and get over it.

[00:48:37] Well, that is, that is part of the dilemma in our society today is because most of us don't live in that small an environment. We live in larger environments or even we've lived in our house here now for 35 years. And virtually everyone that was here when we came is gone. So it's a whole group, whole new group of people. Right. So even when you don't move the, the, the people around you may move. Right.

[00:49:05] Or we don't, we have, you know, we have moved from this neighborhood across country to live near our kids because we think that's the best thing to do, which may or may not be true. And so we find ourself in a new environment where we don't have the social connections and we don't have the sense of community. I mean, the sense of community that's missing in our society today is really a serious problem.

[00:49:32] It is more present in smaller environments and it's more present in some cultures, but it's, it's a problem across the board that again, it's one of those social issues that we know about, but we haven't very successfully figured out how to implement strategies that deal with the changes in real life.

[00:49:57] Well, and I, I could be, I could be overstating it, Karen, but I think like the antidote to that is probably selflessness. You know, I, I think, I think not, not having community is just pure selfishness and having community is selflessness and knowing you're going to be imposed upon and knowing it's not going to be very fun. You know, I'm, I'm the local mortician. Okay.

[00:50:24] I only deal with people in my town on the absolute worst day or maybe the second worst day of their life, like the day after the worst day. Um, and so like, I've learned real quick, like, Oh yeah, everything about my job and my lifestyle is inconvenient and nobody likes it actually. Like we love each other, but they don't like the fact that I have to be there on X day when dad dies.

[00:50:49] Um, but when you, when you get over the hump of selfishness, which happens, I mean, cause I, the phone rings at 2am and I'm really selfish. I'll be like, ah, this cause I'm getting out of bed. Uh, but then as soon as I will myself over the hump into what I hope is something like selflessness, uh, then it's okay to be inconvenienced and it's okay to be like, yeah, family, if you want to, if you want autonomy, if you want to carry dad out, I'm going to let you.

[00:51:18] Uh, I was just having a discussion with a gal. I'm sorry. Now I'm rambling, Karen, forgive me. Um, I was just having a discussion with a gal about, um, high control versus low control. And, uh, like this, this gal's very high control. And I kind of buck that because my whole life revolves around, around me having no control over anything except maybe, maybe four things. Um, and even those not, not that well.

[00:51:47] Uh, but I could see where a certain person really struggles when mom and dad want autonomy. If they're a high control person. First thing I would observe is that, that, that individual autonomy actually can buck up against quite, quite forcefully the sense of, of community or the sense of being, uh, not being selfish. Yeah. Right.

[00:52:12] Because many of the things we want as an individual autonomous human beings are inherently selfish. Sure. Right. So our life is full of paradoxes and, and, you know, for our own sake, you know, one of the

[00:52:31] best things we can learn is to listen, to give way when it doesn't hurt us too much, or even sometimes when it does hurt us and to say, okay, this is the world I'm in and here's how I'm going to make the best of it. I mean, truthfully, it is a matter of adaptation and that goes for autonomy too.

[00:53:00] You know, just not being able to do X doesn't mean that you've lost all of your autonomy, but we're, we're, we're such a, we're such a fixated on the maximum, the max, someone called me a maximizer and I thought, oh my God. And, and I realized that, oh geez, that wasn't a compliment.

[00:53:23] I mean, in reality, as an individual, it, it helps, it helps in terms of accomplishing things, but it also means that you have to learn to be more mindful about when you're trying to maximize everything for your own interest, but for your own autonomy, for your own professional goals, whatever it is that, that means you're not able to easily help other

[00:53:53] people come along with you. Well, it's, it's like the, it's like the Alcoholics Anonymous prayer, right? Grant me the strength to change the things I can, accept the things I can't and the wisdom to know the difference. Yep. Um, gosh, isn't, isn't life, you're right. A paradox. And isn't it just a terrible two-way, two-way street? It is. I mean, you know, I, I, you know, I, I just have to throw this in because I had a friend

[00:54:21] who has cancer and she's been talking more about, you know, the end of her life. She's hopefully going to recover from this. Um, but, you know, she says, well, I want to, I want a green burial. I said, well, it's a green burial. Yeah. She says, well, and she explains it to me, you know, that they don't do anything. They just put you, they just sort of take you out into the forest and whatever. And she says, but it's illegal here.

[00:54:49] I said, well, I guess that's the ultimate in life's autonomy, right? That's right. Right. That's right. And, and I mean, I thought about it and I thought, okay. So I said to her, I said, well, then here's my mediation going into effect. I said, well, what's the next best option? Like, what can you do? And well, I can, you know, I said, you can, you know, you can choose, uh, just, uh, no, no, no fixings, no nothing.

[00:55:18] Just a plain pine box and stick you in the ground. Right. Yeah. Right. That's pretty natural. Well, I would say this, I would say this, at least solid advice for your friend. Um, but just honestly, like go talk to your local undertaker. Um, we are natural problem solvers. We love this kind of stuff. Um, and there, I mean, there are workarounds for everything. Um, and it's just a matter of what a person can compromise.

[00:55:44] And, uh, I'm going to guess it wouldn't be as hard as she thinks to pull it off. Well, that, that's what I told her. I said, well, I said, you know, there, I'm sure there are other ways to strategize mediating this. I mean, you don't have to do something you don't want to, but you might not get everything you want, but I bet you can get a lot of what you want. Yeah. Yeah. We'll have, we'll have autonomy and safety fighting each other again. That's true. We won't, we don't want her left.

[00:56:13] And, oh, this is getting too foolish. Leave it be. I know where you're going. Uh, no, Karen. No, thank you. Thank you for joining us. I, this has been such a treat and I, you know, I wish I could sit here and say like, oh, we've come up with a solution. Uh, but at the end of the day, I, I, it sounds to me like this is a terribly individual problem. Um, but your, your three Ms are sage. I'm going to be, I'm going to be ruminating on these. Cause I think you're, you're right there.

[00:56:43] I, I guess the only thing I would ask people to do if they really do love someone is to really advocate for those others to people, the regulators and the providers to work with them to mediate when, when the, when there's a need to do that, to be genuine, genuinely engaged,

[00:57:08] to find a, find a solution that at least somewhat satisfies everybody rather than just saying, you know, taking out, you know, using AI to create, to create a plan that they really dig in and, and, and work together. We need to know each other along the way. And I, I think that's maybe the thing that's missing, you know, like if, if you don't have

[00:57:35] community with your regulator and your administrator and your individual, good luck. I, I, I just know that that would mean, that would mean a lot more people would, um, find their life more satisfying. Let it be. So that's the last word, Karen. Thank you. Thank you so much for being here. I am so very appreciative. Thank you.

[00:58:04] As I've been reflecting on our episode, you know, sure. We've talked about how ubiquitous the issue of autonomy and safety is, but she brought up early this, these three Ms, man, I'm really gonna have to chew on these, but I just want to review them with you, dear listener. Cause I don't want you to forget them either. And I surely don't. The first is mitigate, right? To remove risk entirely.

[00:58:33] And interesting that this happens on both ends, right? We can either remove the risk and keep someone totally safe, or we can just full on accept the risk and give someone full autonomy. It's a, it's an all or nothing approach in either direction. The second one is manage where we just accept some risk. We accept some freedom and we just try to, to accommodate that as best we can.

[00:59:02] I liked your example of the Christmas lights. We'll hang the Christmas lights lower. And now that, now that she says it, I've actually seen it in my town where the Christmas lights hang below the windowsills. I, I, I should know that that is the second of three Ms, right? We manage our expectations. Or maybe we have someone do it for us, right? The task still gets done. You still maybe get to direct it, right? You become a, you as the person who wants autonomy, become the manager of it.

[00:59:31] But to, to manage that. And then, and then we have mediate where the two things butt heads. Where the conflict happens. And I dare say, I suppose it's because the management fails. Doesn't it? The management fails because they, they, one party wants full freedom.

[01:00:00] One party wants full safety. And I return to the, the Benjamin Franklin quote that I butchered the first time and I'll butcher it again. Okay. Why those who would give up liberty to purchase temporary safety deserve neither liberty or safety, right? We could just substitute the words.

[01:00:24] Maybe those who would be willing to, uh, to want only freedom. Maybe they don't need all of it. Maybe the compromise is necessary. Maybe the person who wants only safety needs to take a break. And give mom and dad a little freedom, except the risk. You know, at the top of the interview, we talked about helicopter parents and, uh, I, I know

[01:00:54] some helicopter parents in my life and it drives me bonkers because I, I'm a very low intervention sort of person. Uh, I think I'm a low control sort of person. And, uh, you know, when, when we're faced with a high control situation that that's where things get tough. And this is, this is part of the learning curve, right?

[01:01:16] In my own career, I've had to accept the fact that for the most part, I am a low control sort of person because I don't get to choose when somebody dies. I just take a gamble and I say, I'm on call every other day. And if someone dies on my day, well, guess who's working? It's me. I don't have control over that. Uh, and imagine if I were a high control person, gosh, I would get anxious and I'd want to control every little thing along the way.

[01:01:45] There are some things I can control, right? I can help pick a funeral time that is conducive to everybody's schedule, right? We, uh, we mediate that. Don't we? Uh, but I don't get to choose the first things. I don't get to choose the death. I just have to accept it.

[01:02:10] And in the same way, I have to accept my kids being a little bit reckless, getting hurt. Sometimes as my wife calls them having natural consequences. And maybe that's part of the answer too, even with our, with our older, our older, uh, uh, citizens, our senior citizens, that maybe at some bit of freedom, you have to accept the consequences.

[01:02:37] And, you know, at a certain age, yeah, those consequences might be death. It might be more than injury or looking foolish or making your parents embarrassed. That's, that's the one the real high control people are afraid of making your, making yourself embarrassed because of your naughty kids. Get over yourself. Kids are naughty. Uh, but maybe, maybe the natural consequence is grievous injury and death. I don't know. But at what price?

[01:03:05] We balance the act every day, don't we? We balance the act getting into the car. So let's not be too precious about it. Let's learn to accept the chance of injury, taste freedom where we can get it and just be grateful. We can have a little safety and a little freedom. Be happy with what we get. Thank you everyone for tuning in to death.

[01:03:32] And it's a treat to be here with you in your ear, in your room, on your screen, wherever you happen to hear me. Know that I'm grateful for you. I appreciate you. And I wish you safety. Yes. And I wish you freedom. And I hope that you can attain a little bit of both. Thank you.