Episode 19: The Case For Lying To Your Mother With Dr. Catherine Madison

[00:00:00] Speaker A: How do I feel if I have a little peace of living here? If I were Bell, I'd bring in a really busy day [00:00:25] Speaker B: and. [00:00:25] Speaker A: And I've done that for all the things and I know it is only for you. And will tease, by the way, I [00:00:41] Speaker C: just would like to say that in our last episode where we had some sound challenges we had to work through, I just a want to commend you on your efforts for getting through those and ending up with a wonderful sounding episode. [00:00:57] Speaker B: I cried a lot. That was hard. [00:00:58] Speaker C: Crying. Crying is healthy. But I also like to add that somehow that interview with Juliet, the sound in the end, the sound quality I thought was some of the best we've ever had. So whatever you were doing to like belt and suspenders, everything, probably putting, you know, sound controls and filters from Riverside and then it goes into GarageBand and then there's some sound and control filters there. Whatever you did, you know, keep doing that because. Well, it's been sounding great. But there was something different that was really special about that one and I don't know if it was a different concoction of some sort. [00:01:40] Speaker B: Well, I'm. I'm glad and shocked because how many edits do you think I sent you of that one? 120. I mean, when I look in my GarageBand history, it's Edit 1, Edit 6, Edit, Edit 14. I mean, that was definitely, sound wise, our most challenging one. So I'm glad that it came out well and thank you for the compliment. And also, yeah, there was some crying there. I haven't cried while editing in a really long time. And I wouldn't say like full out, like full on crying, but definitely some angst with that one. [00:02:11] Speaker C: Also, it just goes to show you [00:02:13] Speaker B: sometimes, or hold on, as dad used to say, it just shows to go you. I love when he would say that. [00:02:19] Speaker C: Oh, did he say that? [00:02:19] Speaker B: Yeah, I'd say it just shows to go. [00:02:21] Speaker C: Yeah, that's a good dadism. But also it's just with technology in general, sometimes things just happen that are completely unexplainable. Like for some reason your voice in that particular section was in a weird funk and there was no reason or rhyme for it. Everything else was the same but, you know, we got beyond it. So I think that is a great segue to our guest today. [00:02:48] Speaker B: Which, by the way, when I listened to that interview, the sound quality sounded okay. Now I'm worried that it doesn't because the other one, it didn't sound okay. And it did. [00:02:58] Speaker C: What I was going to say is that one of the themes to come up spoiler alert is that sometimes things are unexplainable and there are a lot of gray areas, especially with dementia care. And even when you're dealing with a high profile, amazing author, dementia care experts, PhD, all of the things even she sometimes can't give you a clear answer as to why something happens. And embracing those gray areas are very important as we're gonna get into. [00:03:31] Speaker B: Well, Shameless Plug. [00:03:33] Speaker C: That's interesting. [00:03:35] Speaker B: Shameless Plug. That's why we call this podcast. If it's not one thing, it's Joanna. If it's not one thing, it's something that it's completely unexpected or inexplainable or, you know, something's going great and something's not going great. And there's never. Well, there's not always. I shouldn't say never. There's not always a rhyme or reason as to why that is. [00:03:57] Speaker C: No, there's not. And maybe we should just get to it because she's got a great book that she has published that we're going to talk about in detail. And we'll give you all the information and key points and interesting topics about it when she comes on in a bit. And this is Dr. Catherine Madison, who we are going to affectionately call Dr. M. And she's coming on in a second. In the meantime, here's mom for little ditty. [00:04:27] Speaker B: Okay, I want to just really do a quick piece on the ditties. So as you know, I'm having a hard time getting new recordings of mom playing the piano and singing. Although I don't think I told you that yesterday. We went for a walk, and while we're walking in the middle of nowhere, she just starts singing the sun will Come Out Tomorrow. And then when I started singing with her, she sort of stopped. And then when I stopped singing, she started again, leading me to believe that she wants a solo number. So I'm happy to give that to her. [00:04:59] Speaker C: That's interesting. Actually, that triggered an idea. Maybe we should mic her 247 because she's doing a lot of, you know, she does a lot of talking to herself. Sometimes it's. Is she thinking that she's in conversation with somebody else or is she just speaking out loud? [00:05:17] Speaker B: We don't know. [00:05:18] Speaker C: She might be. So whatever the case may be, there's also some interesting things that come out of her mouth when she's just speaking and even reading out loud as well, where she might also fub the words. Maybe we take some snippets of that and we apply some background music to it. And that might be another content channel that we can figure out. [00:05:38] Speaker B: I like that you think that I have the editing skills to be able to do that. I'll see if I can figure that out. [00:05:44] Speaker C: But the issue we have somebody figure that out and. But also just singing along to music that's playing on the Alexa is another one that we can do. The piano playing is getting less and less cogent. [00:05:55] Speaker B: But yeah, I mean, if you heard me trying to get her to sing last week, she would do like maybe a line of a song and then immediately morph into Somewhere over the Rainbow. So, you know, listen, she likes that song. We might just be hearing that over and over, and that just might be where we are now. And that's okay. It's cute. [00:06:13] Speaker C: It's okay. It's definitely okay. All right. Speaking of mom, here she is. And we'll be right back. [00:06:27] Speaker A: Somewhere over the rainbow Skies of blue and the dreams that you you coming along and always will be we are [00:06:51] Speaker C: back here with Dr. Katherine Madison, a neurologist based in San Francisco and author of the recent book which we really enjoyed, called Navigating Memory Loss. Essential Questions and Answers on Alzheimer's and Dementia. We can't wait to get into you into with you, Dr. M. Is it okay if we call you Catherine? I want to be sure. [00:07:17] Speaker D: That's fine. [00:07:18] Speaker C: That's proper with everything. [00:07:19] Speaker B: I think we should call her Dr. [00:07:20] Speaker C: M or Dr. M. We might, we might switch it up as we go through this session, but I'll let you do a more. [00:07:28] Speaker B: I think an MD doesn't come out of nowhere. Let's, let's, you know, make that as grandiose as it has been earned. [00:07:36] Speaker C: It has been earned, that's for sure, as we're going to find out in a few minutes here. But, Dr. Rem, maybe you can just give us a little intro on your background and what you're about in the Alzheimer's and dementia space. [00:07:47] Speaker D: Sure. And thank you so much for the opportunity to meet with you today and share what I feel is valuable information. As you mentioned, I'm a neurologist and I've done different things throughout my career. I became very interested in dementia when I saw my mother go through it and what I experienced caring for her. And my father literally fell apart. And I was working and had three children, you know, and so I been through that really, really tough period and I started working in a major medical center, and then we had a small memory clinic and I took care of Ray Dolby of the Dolby sound system that we all take for granted today and became close to him and his family and his wife, Dagmar said to me one time, I'd like to help other people as much as you've been able to help me and my family. And so we envisioned and created the Ray Dolby Bring Health center in San Francisco, where we focused on, well, the center is still there. I'm just not there anymore. But the center focuses on helping the individual who has impairment, but also their family, because I look at dementia as a horizontal illness that affects the person and everyone connected with them in their family and social community. So I left that center. It's now gotten bigger, and they're helping more people and they've expanded on research. It's fabulous. And I now work with a nonprofit organization called Seniors at Home, providing care for people in the community and trying to help seniors stay in their home. And then I put together this book to try and do exactly what the title says, to get the questions whose answers I saw to be the most valuable to patients and their families out to more people. [00:09:56] Speaker B: Wonderful. [00:09:57] Speaker C: Thank you so much for that intro. And let's dig into that wonderful book because we've been through this with our mom in an acute way over the past five or six years, but still learned a lot by what you talk about in the book. And I want to ask a couple questions here, just about the nuances between memory and whether something is like you're normally missing things or bigger factors that might trigger the need for a diagnosis for dementia. You know, our mom eventually went through some actual tests that kind of get to the actual diagnosis and understanding that you mentioned Dr. James Galvin's tests and how that is useful, and maybe you can talk a little bit about that testing. And when we get to that point where this isn't just normal lack of attention or just missing something. [00:10:49] Speaker D: Right. Well, I often speak to groups and explain that we have normal changes in our brain with aging and say to people, we develop spots on our skin with aging, but we don't see that we're also getting spots developing in our brain. And so that slows down communications. And so we do have more of that tip of the tongue phenomenon. We have much more trouble with multitasking. And those sorts of things can occur on a daily basis. But when they're occurring frequently and start to interrupt your ability to navigate independently in your own world, that's a cause for concern. So if mom misses one appointment here or there, that's fine. But if she's missed two or three, and it's starting to be a problem. It is a problem. If she asks you a question once about, you know, again the same day and you explain the answer and she says, oh gosh, I forgot you already told me that that's okay. But she asked the same questions several times during that day and doesn't recognize she asked them before. That's concern for a problem on a more dramatic level. Like at the Alzheimer's association, people would say, well, if you lose track of your keys, that's okay, but if you put them in the oven, that's a different story. You know, I mean, so some, but that's usually more dramatic. So what I'm saying is we can all have those little glitches, but when they start to become more of a hum in the background and disrupt normal routine, that's absolutely a cause for concern. [00:12:39] Speaker B: So you talked in the book about this term. I have to get the pronunciation right. Anosognosia. Am I saying it correctly? [00:12:51] Speaker D: I say it as anosognosia. [00:12:53] Speaker B: Ah, ja. Better. Thank you. [00:12:56] Speaker D: So anosognosia is a medical term that's been around for over 100 years and it relates to a brain's inability to see how it has changed or if there's something wrong within itself because self referential thinking has been disconnected or damaged. We accept it pretty commonly in psychiatric illnesses. We all know the story of someone with a schizophrenia who stops taking their medicine because they don't think they need it. So we see it and accept it in psychiatry. It's been ignored in neurodegenerative illnesses where it can be present in up to 8, 80 or 90% of the patients that they don't see where they've changed. So when you say to someone, I think we should take you in for an evaluation, their response is, what for? There's nothing wrong. They can't see the change. And so I encourage different strategies to work around the analyst technology. You have to know that it can be there and then you can work around it. For example, if it's an older couple getting your loved one in for an evaluation, you don't tell them you need to get in for an evaluation. You say, you know, they're offering evaluations now for memory loss because they have new treatments available. This is really exciting. I'm going in and I want you to come in with me. So we both do this together as a team. So you take the spotlight off of the person who needs help because they don't see that they need any help. [00:14:39] Speaker B: Yeah, that's Actually a really great point that that was a huge issue for our mother. Our father was different. I think he was recognizing that there were some signs our mother, and many people do. Yeah, yeah. Our mother could not have been more convinced that everyone around her was, you know, misdiagnosing her or was just incorrect in terms of their evaluation. You talked about that concept that you really can't argue with who has anosognosia because their reality is so different than your own. Can you talk about that a little bit more? [00:15:15] Speaker D: There was a large study done in the United Kingdom where they interviewed people who had impairment. Family members, doctors, policymakers, care providers. And they put out a 200 page publication called Dementia Truths, which I really liked because in that publication they talked about the concept of different realities. And again, it helps anyone working with someone with impairment to understand that there can be different realities. So if your loved one is in one reality and you try to offer them a solution based on just your reality, you're never going to find a path forward. So if you take something that is plausible in their reality and you mix it with the goal of where you want to get to, you have a much greater chance of success. An example I would use for that, which is very relevant for people living in San Francisco is I had a woman who was living in her high rise condominium on the 22nd floor on knob Hill. You know, and San Francisco is actually very cold pretty much year round. It's gonna be warm today. That's unusual. [00:16:36] Speaker B: But you're dressing in layers. [00:16:38] Speaker C: Karen knows it very well. She, she lived there. [00:16:41] Speaker B: I lived on Russian Hill. And I remember leaving. Yeah, I would leave in the morning and the fog belt would be enveloped my home. And when I would come at night, the fog belt would be back. I didn't even know how beautiful it was during the day because I was always at work. But our joke was that you have to take 8 million layers with everywhere you go because you might, you might have five minutes where you could take off your jacket in July, but then be prepared to put it back on along with something else. So, yes, I know that weather. [00:17:08] Speaker D: You can understand that. To get this woman to move out of her condo, we simply came up with the story that the city had changed codes and all of the windows had to be upgraded and made double pane. And so that's something she could understand because every day she could feel the cold air coming through those single pane windows. So we were able to move her into a residential care facility. And, you know, that project just never Finished. Also believable. We couldn't get the supplies the contractor did. [00:17:43] Speaker B: It actually is believable, sadly, if you've worked in. But you know, it's interesting because we did talk about this, Andrew and I were talking about this, that even when you're meeting with a family and you're collecting family history, when you're asking the person who potentially has dementia, they're probably not giving you accurate responses. I guess you are. You also, you must also have to ask the family members because you wouldn't know if what they're telling you is real or not. [00:18:15] Speaker D: That's absolutely true. So guidelines for medical providers when they're working in this field is that they have a confidant, one of the. Someone who is close to the person who's having a problem. It's often a family member, but it can be a good friend. And I didn't follow up, Andrew, on what you had mentioned earlier. I generally recommend that people bring something written into the doctor and they try to get it to the doctor ahead of time. Because if you're trying to have a discussion, you, the family member, are trying to have a discussion with a medical provider about where mom's having trouble and mom's sitting right now to. That's also not going to work. It's not going to be productive. And so one of the screens which is publicly available, made by Dr. James Galvin is called the AD8. And this is a little document that asks if there have been significant changes in any of these eight areas of function within the last year or so. And it has to do with hobbies and interests, you know, being for repeating things multiple times. And as you go through these eight items, any one of us could mark. Well, yeah, I don't think I'm as good at that as I used to be. But if you go through that with a loved one and you as a family member can actually fill it out because you have noticed this, and if you've got a score of three or more, no, that's a problem. And so you provide that to the medical provider along with a little note. She's not aware of any of this because the amlosognosia in neurodegenerative diseases is not well enough understood by medical providers either. [00:20:13] Speaker B: Interesting. [00:20:14] Speaker C: Yeah. And I. That we've also noticed and this was a learning process for us as far as how to deal with anosognosia where we didn't even know that that's what it was because you. I mean, we have this default, like if we like if we screw up, it's okay. This sounds morbid, but if we screw up, it's okay because she'll forget it in about an hour. You know, that that happened, you know, because in the beginning we try to get her back to the assisted senior home that she was living in. And I would try to like, actually reason with her why that had to be and say things like, oh, you need help and you need care. And like one time I did that and she started crying. And then I. Thankfully I talked with our wonderful friend who runs the place and she's like, yeah, you want to just kind of gently fib or find other alternative answers to that. And so we've gotten good and certainly okay with deflecting and not battling things head on. And that is just part of this whole coping mechanism, not just for us, but for them. But I wanna also ask you, like, what I found interesting in the book is like, the depth to which lying, for lack of a better term, can be okay. You know, like you. And maybe you can delve into this a little bit deeper. Like, you talked about an example where a woman had lost her husband, he had passed away and she wasn't realizing it. And to cope with it, the suggestion was to kind of tell her that he's just away on business and he'll be back later and she'll be with him. And that honestly, when I read that, I was like, oh, wow. I didn't realize that going that far is something that is recommended. Can you explain a little bit more, like, even to those lengths, why that's the right approach? [00:21:59] Speaker D: Well, I think, Andrew, that a lot of this is grounded in our feelings and our emotions around these topics and also greatly influenced by the language we use. And so when you use the term lying, we immediately say that we sense that that's something's wrong. So it's been rebranded with titles like Therapeutic Storytelling. [00:22:31] Speaker B: I like it though. It does sound better than lying. [00:22:36] Speaker D: But I like to look at more thinking about it from the person's perspective. And if someone has a cognitive impairment and short term memory loss, if they don't remember that their spouse has died, is you telling them again and again and creating a fresh wound that they have forgotten. Is that the right thing to do? And so there is not universal agreement around this either, guys, but I am of the school that feels that we need to understand their reality and make them as comfortable in their world as we can. And that would include this kind of storytelling or partial truths. Because, you know, if we have spiritual beliefs making the statement, he's away right now, but he's safe and you'll be with him shortly. Isn't that far from a truth? [00:23:48] Speaker B: Yes. [00:23:49] Speaker C: Yeah, that's right. [00:23:49] Speaker B: And also the idea that you have to. I mean, I know so many people who've been in this position where they say, oh, right, every day I have to tell my mother that her husband has died 10 times. And then it's awful. And we've had this conversation that, should I stop telling her that? And the answer's probably yes. [00:24:08] Speaker D: Yes. Because you should stop sharing. [00:24:12] Speaker B: Yeah. Thank you. I actually really appreciate you as an md, telling us that, because having that permission as caregivers is really important because we don't really know, well, what's that fine line that you want to be, you know, approaching someone with honesty, but that just feels cruel, you know? [00:24:31] Speaker D: Well, Andrew, you made a comment in some of our notes, back and forth, just about a gray area. And this is all gray. It's all gray. [00:24:42] Speaker C: Yeah. And, you know, switching gears to dealing with the different types of behavioral dementia, I mean, we're lucky. I think we've mentioned that our mom has kind of the sweet kind of dementia. She's very agreeable. She's usually seemingly in a good mood. She's kind of blissfully going through the day and everything. Just. [00:24:59] Speaker B: Just so we're clear. Was not her baseline. So we were thrilled. Yeah. [00:25:04] Speaker D: Yeah, I've seen that. It's a gift. [00:25:10] Speaker C: It is a gift right now. It is a gift right now. Karen had to deal with that more than me. My sisters were facing some criticism, more than the spoiled third son. But it did occur, and she has experienced a behavioral change. But we feel really lucky because it can be the other way, where people are very aggressive and belligerence and confusion is just rampant. And you mentioned some interesting tactics in your book that people use to manage this. And honestly, we feel lucky. We don't really have to worry about that. But can you give some tips for when you're dealing with that aggressive, belligerent type of dementia? What's going on and what can be done? [00:25:56] Speaker D: Well, every case is unique and different. And luckily, in the care community, more and more, we are beginning to understand that usually irritability and aggression represent an unmet need. So the case I talk about in the book is a nurse who felt like during shift change, she needed to be doing something because that was just part of her core reason for existence for so many years, working as a nurse. But in other situations, someone gets irritable or aggressive, and it may be because they have pain. It may be because they're hungry. It may be because they're overstimulated. So there can be a lot of pain, different things going on that will bring out that irritability, aggression, because the person who's impaired, the only thing that they're recognizing and acting on is that things aren't right, but they don't know what it is. And that's frightening, and it must be someone else's fault. [00:27:11] Speaker B: Interesting. [00:27:12] Speaker C: Yeah. And I had. And I'd like to preface this question with the audience to the audience that I've not trying to talk about a premonition of death here, but, like, I did have the experience where two of my good friends within the past year who were dealing with their fathers in the final stages of life, clearly with dementia, both of them became extremely aggressive. The fathers, by the way, the fathers, not the kids. The fathers became extremely aggressive to the point that on one case, the son had to go. And actually the caregivers were like, we can't handle this guy anymore. So either he's out or you have to come in and really handle him, like, several hours a day for five days a week, which he did until he shortly thereafter passed. And another one was indeed kicked out of a facility because he was physically lashing out. And they said, no, you can't be here anymore. And both of those fathers, shortly after the behavior, got really serious, passed away within a couple months after that. And I'm wondering, is that ever a sign that, dare I say, the end is near, or is that uncommon to see, like, somebody being very. Cause it seems like, oh, they've got all this vigor, and then all of a sudden you hear that they've passed away. It doesn't seem to make sense. [00:28:29] Speaker D: That's a tough question to answer, Andrew, because I've seen so many different kinds of cases. I certainly have seen some cases exactly like you are describing. It's been. And I don't have research to support this. I can just share with you that it's been my impression in those cases that the person had an exaggerated sense of something's wrong here and it's gotta be somebody else's fault. And they were lashing out because they. Even though they had likely an element of anosognosia where they didn't know that there were changes in themselves, they could very clearly sense something was really wrong. And I think that tends to cause people to lash out. And I have seen cases where individuals go through that, and it is closer to the end and partially because those individuals then want to give up because they're really discontent with the world that they're living in. But I'm using a lot of speculation here. [00:29:38] Speaker C: Sure. [00:29:39] Speaker D: In. In general, that is not a harbinger of the end when someone's really aggressive like that. [00:29:48] Speaker C: Interesting cases where. Sorry, have you seen cases where somebody has been in that aggressive kind of mode and has been changed and altered to be a little bit more agreeable? [00:30:03] Speaker D: Medication can do that. And they have come out with newer medications now specifically to do that, because that's when one of the targets of research recognizing that it's a big problem. So, yeah, medications can be used. And then what you're doing is you're chemically changing the environment in their brain that either they're not as aware of their environment around them or they're not as aware of the changes in themselves that are making them act this way, act out like that. [00:30:41] Speaker B: So on that subject, when we're talking about end of life, we talked about this briefly, but I've been really clear about what I want to happen should I have an extreme dementia or Alzheimer's diagnosis. But we know there's a lot of gray areas around that, and one of them is that one. The clearer you can be, the better. However, I'm understanding that you have to have a level of cognitive, for lack of better word with it ness. In order to be able to make those decisions. But then if you're cognitively with it, then how are you able to make decisions for when you're not? Am I saying that one? [00:31:29] Speaker D: Yeah. No, that's a really tough one. I mean, there isn't any place here in the United States like there is over in Europe where people can choose to take their own life. And over in Europe, over in Switzerland, you know, where people will go. They actually have to have an examination in virtual examination by a mental health practitioner to determine that they have the capacity that they are competent to make the decision to take their own life. So people, when they decide that they want to proactively end their life, have to do it while they still have that ability. In our country here, we don't have anything like that. Although voluntary stopping of eating and drinking is legal. And there are some groups in this country that will facilitate that and help you try and set something like that up. But again, you've got to document very clearly that this is what you want because you simply don't want your life to continue. I included in my book an addendum to an advanced healthcare director that is specific for neurocognitive impairment. And I put that together really, because I've seen so many cases where someone is existing. I've had clients that, you know, particularly when we had Covid and we weren't seeing people as much. And I went to visit a client in a really nice small residential care home that was a collection of houses that had been put together. So it was really very nice. And I noticed she was in what we call a jerry chair, which is kind of like a portable lounge chair with wheels that will tilt back and everything. And I talked to the staff, a very good staff, and said, well, when did she last walk? Oh, she hasn't walked for a year. No. And so she'd been non ambulatory for over a year. She was incontinent, so they were changing her. And I asked, how's your appetite? I was told, oh, her appetite's great. I followed up on that. I said, does she feed herself? And I was told, oh, no, no, doctor, that would be way too messy. So they were feeding her. And when I see someone like that, that's why I say they're just existing. And I have put my addendum together because I don't ever want my family to allow me to be in that kind of a state. I'm a bit of a control freak. And if I cannot control my life, I don't consider it worth living. And so what I put in this addendum is if I have been diagnosed with a dementia, which by definition means that I am no longer in full control of my life. To have a diagnosis of a dementia, it means that you have cognitive impairment such that you can no longer carry out your own daily activities independently. That's key to the diagnosis. If I have that diagnosis, if I come down with any kind of a medical illness, be that a pneumonia or an infection, I don't want any medical tests and I don't want any medical treatment, including antibiotics. I want only comfort care, because I would look at that as an opportunity to make an exit. Also in this addendum, I have written out clearly that don't ever coax or cajole me to eat, let me feed myself, whatever I want, even if it's a health risk to me. So I wrote those things out very clearly. That being said, we have three daughters and our middle daughter will still. She's the agent, designated agent, because the whole family agrees she pulled the plug. [00:36:01] Speaker B: That's who you want? [00:36:03] Speaker D: Yes, that's who you want. [00:36:04] Speaker B: I mean, hopefully when the time comes, not prematurely correct. [00:36:08] Speaker D: Correct. But she still will say, mom, do you really mean that? But I think it's wonderful that she can. She keeps asking me that so I can keep saying, yes, honey, I really mean that. So that if that time does come, she can follow my instructions. [00:36:28] Speaker B: And the beauty is that you are leaving her instructions to eliminate that gray area. I've done the same thing with my nieces, and actually, your addendum is incredibly helpful. But I did the same thing with my nieces where I said, you know, I could not be clearer. There will be no nuance to the decision making as long as they're, you know, there are legalities that are met. But I think it is a great gift for us to do that for those who are gonna carry on and have to live out our wishes. Because I know my mother, had she been able to do that, I know she would have. But she didn't. She couldn't. And so now we are left in this gray area probably for a long time. [00:37:15] Speaker C: Well, I would also say that nuance is the name of the game, and gray area is the name of the game. I don't think it's possible, personally, that we're gonna get to a point where whoever's in charge is gonna be like, okay, now it's time and it's over. You know, like. And I guarantee you, your nieces, when the time comes, are also gonna be wrestling with, is this the time or is that the time? And even Mom. [00:37:39] Speaker D: That's right, Karen. [00:37:40] Speaker C: Even Mom. Like, if. If we didn't feed her right now, I mean, she could actually put the spoon to her mouth and feed herself, but, like, if we, our caregivers didn't serve her food or we didn't serve her food, I don't know if she would eat. And, like, she def. Right now doesn't want to go. Like, she experiences joy and she can have simple conversations and she's not there yet. I think even she might agree. But, like, even the food thing, it's like, because of what's going on in their mind, and you don't know what's going on their mind, they might be hungry, they might want to eat, but not be able to physically do it or physically communicate that that's what they want. So, like, and that's just feeding. So I think it's just fascinating that as best you can do, Dr. M. I think you're doing amazing work, at least giving the best explanation you can possibly give that this is what I want. And being Karen, as well, being as detailed as you can but in the end, this is life, and we're going to have to deal with these nuances when they come up, don't we? [00:38:40] Speaker D: That's true, yes. And, Andrew, I think you're bringing up a really important point there for everybody out there who is a caregiver. I think it's really important to use the mantra, I'm doing the best I can. [00:38:55] Speaker B: Absolutely, yes, it's true. [00:38:57] Speaker D: Perfect. [00:38:57] Speaker B: We say that all the time. Yeah, for sure. Well, let's end on a positive note. [00:39:03] Speaker C: You're talking about death and dying right now. Can we talk about something happening? [00:39:06] Speaker B: In fairness, just to go back to that point, though, I don't necessarily think conversations about death and dying are negative. I think that the more we can communicate and be. Be really clear about what it is that we want, I actually think that puts us on a much more positive note because I feel like we should be doing more of that and it makes it easier for everybody who will outlive us. And I actually, I like that conversation a lot. I have that conversation a lot, and I think it's very meaningful. And I'm not an expert in this field, but I've been living in this world for a long time with my mom and previously with my dad. I would want someone to do that for me. And I hope that our listeners will be taking that into consideration when they're making their plans. But in your book, you talk about Hodgwick, this Dutch community. [00:40:03] Speaker D: Oh, well, it's closer to the Hoke of it, but I gotta tell you, everybody says it differently. [00:40:09] Speaker B: It's a WV mess up in the language. Can you tell us this community? It's a model for dementia care, future dementia care. Can you tell us a little bit about this? [00:40:23] Speaker D: Well, in Europe, there are a number of countries that follow more of a social model for medical care than the medical model we follow here in the United States. We've become through my career. So I've been a doctor for coming up on 40 years, and through my career, I've seen just ultra specialization within the field of medicine. So it's gotten to be like every single doctor just deals with that part of the body, you know, or you know, and they don't look at the person as a whole. And in the medical model, we're always trying to find one problem within our field that we can fix. That leads to a lot of costs, leads to a lot of tests, a lot of medicines and such. But that's our model. The social model is looking at the individual as a whole. But Also as the society as a whole, with a limited number of resources, and we devote so many of our resources to medical care at the end of our life. And perhaps it would do us some good to look at the social model and say, is that the best use of resources overall for our society? At the Hocovac, it's an open community for people with moderate to severe dementia. And I had the opportunity to go there with my organization, Seniors at Home. We did a three day learning immersive experience. It was phenomenal. So we didn't just plain drop in to visit. And their attitude there is that they, they screen the people who are coming in, they have to have moderate to severe dementia, and they then group the individuals into houses with seven or eight people and they separate them more on cultural preferences. It would be a little harder in our country because we're so politically polarized. But over there it's like, who's a city dweller who likes modern life, who likes country life, things like that. And the patients or clients are able to wander throughout this community. It's a closed community that is an actual village. They have a main street with little shops, they have a grocery store where people can actually go in and buy food. They have little social club. And there are also trip hazards there. We were fascinated by that. And we asked one of the co founders who was touring us around, we said, we've noticed there's a lot of trip hazards around here. How do you allow that? And he just looked at us and said, things happen. And I really took that in as potentially something we could learn from because we don't tend to approach things that way in this country. But it was really a game changer for me to go over there. So the clients who live in the Hokovac, he told us, become more ambulatory in general than before they came in because of this fact that they let them wander freely. They become more ambulatory when something happens, though, even like with a fall, unless someone is actively bleeding or they have a compound fracture where the bone is sticking out of the limb, their number one treatment is observation. Wow. And so we immediately rush someone off to the emergency room and it's men often hit their head, which is a traumatic experience for the individual family. [00:44:31] Speaker B: And then we're talking sundowners. And then often those kinds of experiences, in my limited experience, those are often just the beginning of a terrible end. [00:44:43] Speaker D: When we bring people out, they're traumatic and it takes days to recover from them. So what I put in the book was a graph that one of my daughters helped me create. And that is the ideal that the individuals, when they're living in that open environment where they're allowed to maintain their autonomy with associated risks, they have a higher level of function, but then when something happens, they have a fairly precipitous drop. Whereas in our society we're constantly propping people up and without meaning to, we take away independence because we think it's going to be better or safer for them. And so in our model, people can linger for a much longer time and have that very, very, very, very, very slow decline with a long tale. [00:45:44] Speaker B: Amazing. [00:45:45] Speaker D: Many of us would say, if I had the choice, I would want a quick exit. [00:45:51] Speaker C: Yeah, I think everybody agrees on that one for sure. And I found it interesting when I. And it was interesting to see you talk about this case in your book because I'd also recall reading an article, I don't know if it was a New York Times article or something. Somebody had actually talked about this case before. And I found it interesting that the caregivers, correct me if I'm wrong, on the streets roaming around are like plain clothes caregivers, like undercover caregivers that are just happen they're nearby in case one of these things happen. [00:46:24] Speaker D: Yes, absolutely right. We were, except for there were a couple individuals that were more verbally abnormal. We had a hard time telling who was a caregiver and who was resident there because everybody's just walking around normally. It was fascinating. Now, they did pass a law in the Netherlands that no community could be controlled, that, you know, it had to be open. But got an update very recently. They were really concerned about that at Hulkovac because they're fairly close to a four lane highway, there's canals all over the place. They challenged it. I think they asked to study it. So they have not implemented that open door policy at the Hocaveca. I think that would be a bit much. I don't think we're ready for that. But the concept of complete freedom within a confined community I think is fabulous. And we are starting to move that way here in the United States. But it's going to take a while for sure. [00:47:39] Speaker C: Yeah. And what's fascinating, what's wonderful about that story and what they're doing is that there's already data that it's working like the experiment is a success. There's no dispute about that. [00:47:50] Speaker D: Right, right, absolutely. Yeah. No, the people really have a good life. And the other thing I talk about in my book that I think is important is we all are familiar with the concept quality of life. I think there's another dementia. I'm sorry? I think there's another dimension when you have a dementia, and I call that scope of life. And so when someone has a dementia, as their autonomy gets eroded, they might still have a good quality of life, they're in good health, they're being very well taken care of, but their scope of life becomes more and more and more narrow. And so I think that's another thing for us to think about when we're looking at the whole person. [00:48:47] Speaker C: I think that's a wonderful place to leave it. Wow. Dr. Catherine Madison, neurologist extraordinaire. I'm adding extraordinaire to your time. [00:48:57] Speaker B: I'm going to add extraordinaire. We're going to throw in author, published author. [00:49:02] Speaker C: Yes. The book is Navigating Memory Loss. Essential Questions and Answers on Alzheimer's and Dementia. Thank you so much, Dr. M. This was fantastic. [00:49:12] Speaker D: Thank you so much for everything you do and helping us get this information out there. [00:49:17] Speaker B: Well, we appreciate you and we're grateful for your time today. [00:49:22] Speaker D: Thank you. [00:49:23] Speaker C: And now here's mom to play us out. [00:49:35] Speaker A: Put on a happy face and my brother is the one on a very happy face. Somewhere over the rainbow Skies are blue and the dreams that you're doing. [00:50:07] Speaker B: And we are back. All right, Andrew. I said last year week when we talked to Juliet Holt Klinger, that I'm ready to move to a granny pod, which we decided that we were going to call something else, but I've changed my mind. I am ready to move into a dementia village in Amsterdam or wherever they might have one, because I think they sound lovely and, you know, plan ahead. Why not now? [00:50:33] Speaker C: I agree it's a fantastic, fantastic spot. And I love the approach. And the fact that it's already working and there's data to support that it's already working is amazing. I just like the concept of the caregivers or watchers or security, whatever you want to call them, are just kind of in plain clothes, acting like they're different citizens of the village, strolling around casually keeping an eye on things. And like Dr. M says, you know what? Things happen, they will happen. This is part of it. [00:51:08] Speaker B: I don't whine about, well, what if somebody falls or what if they wander off or whatever. I do really like leaning into that concept because, you know, yesterday I was mentioning that I was taking mom for a walk while she was singing, and we were walking about a block away and there was some construction, and I was looking to decide, like, can she get over this sort of gravelly rogue. She was moving pretty well. So we started to make our way down to it and I was thinking, wow, she's kind of guiding her a little bit, but she's doing great. And all of a sudden she started to do a lean over to the side. And I thought, oh, I don't. I don't know if I'm going to be able to catch her. And I did write her and then said, why don't we turn back around and cross the street? So, you know, I'm so eager to kind of surround her in this bubble wrap atmosphere. And yes, obviously I don't want her to fall. And nor did she. She wobbled a little and we got her moving again. But. But I do feel like I'm constantly in this state of worry about what's going to happen next. What are we facing next? I would really like to adopt more of that attitude of we're going to face what we're going to face. I'm really, I'm trying really hard. It's not always easy. [00:52:17] Speaker C: Yeah, I'm pretty good at that. [00:52:18] Speaker B: I will say there's great at that. [00:52:20] Speaker C: Yeah. But there's also areas where I'm very military. Like when she's coming up those couple steps in the breezeway, there's no chance that she's going to fall backwards and crack her skull open. I'm not going to let that happen. So I've got the right leverage and coverage and observance to make sure that she is doing okay and doesn't need my help. [00:52:39] Speaker B: Yeah, well, let me clarify. I'm not saying I want to put her in a trampoline. I'm just saying that I do feel like, not just even with falls, but just with life in general, that it would be more helpful if I could adopt a better attitude of she's going to go through some kind of process and things are going to happen and we're going to figure it out and it's gonna be okay, as opposed to, oh my gosh, what's next? [00:53:02] Speaker C: Yeah, but again, cut yourself some slack. If you're on a walk with her and she's on uneven sidewalk, it's okay to be near her to make sure she doesn't fall down. Like, yeah, you don't have to, like, be 15ft away hoping she. She does all right. You know, she probably will. And even if she does fall, she'll probably be fine. But, you know, let's. Yeah, it's, I think, the key in these areas, things to Let go of is when you're not with her in, like, close proximity. And to be willing to just let that go. [00:53:35] Speaker B: Yeah. [00:53:35] Speaker C: And if you get an alert on the camera that says something happens, emotion occurred. Check it out. Fine, check it out. But you don't have to be, like, constantly checking the cameras to make sure she's still sitting in the chair and all that stuff. Like, okay, these are. These are. Are things I think you can. You can work on, but I think you're doing a fabulous job getting there. And if I may, some of my takeaways is obviously the. And we've. We've talked about this before in different episodes, but she does a great job, Dr. M. Of highlighting the. The lengths to which you can lie, if I may say lie, and how important that is. And, And. And just this concept of when someone has dementia and they forget something a few minutes after anything happens, to keep reminding them that their husband is dead is really awful. It's really bad. Like, you're making them relive that memory every single time, and then they forget it and they. And they relive it again. But it's beyond that. It's like in the beginning stages. And I feel we've all dealt with this. I know I have. You're like, how can you not. How. Why are you doing that? I told you not to do that. Don't you remember that I told you not to do that? And the answer is no, they don't remember that you told them not to do that. It's not malicious. They're not messing with you. And every time you remind them that they forgot something and you show that angst slash anger, you're making them feel bad. A. They're like, oh, wow, I just reminded that I have a degenerative mental disease. Thanks a lot. And. And I see that you're upset with me because of something I have absolutely no control over. Thanks a lot. So, like, these are really important things to keep in mind. And it's just. It reminds us that, like. And one of the common takeaways I thought we had in the discussion with Dr. M is that when and why it's so tough to be a caregiver with someone with dementia is that you really have to unlearn a lot of these basic things that you learn as a child. You have to rewire your brain and unlearn things like, don't lie. Things like, no matter what happens, call an ambulance or give someone medicine if they are in need. Things like, extend someone's life as long as it can possibly be extended no matter what the condition, or even simple things like, hey, as long as you take your time and study a problem and really get to the bottom of it, you're going to find a definitive solution, which, of course, is not always the case with dementia. And so I think to be conscious of the fact that to rewire your brain is a process and it doesn't happen overnight, and it's difficult, but also very important. That's a really key message I think people have to come to terms with. [00:56:16] Speaker B: It's true. And it's also, you know, think about it from a parenting perspective that, you know, you have to undo so much of what you consider natural. Reminding someone to do something, kind of calling them out when they don't do do something, correct. Expecting that I'm going to figure out this problem, it has a solution. Which, you know, in parenting, that's not always the case either. But, yes, I really think I have worked really hard on eliminating don't you remember from my vocabulary. And you know what's interesting is that I sort of notice that I'm doing that even with my real life. I mean, not to say that mom's care isn't real life, but I find that I am far less scoldy about things that people might forget because if we remembered, we probably wouldn't do it. So it almost becomes like this great life lesson in general. [00:57:10] Speaker C: Well, if I may go Buddhist Zen and take it one step further, do it. Maybe we could be better about reminding ourselves things that we do when we do them again, and we're like, hey, I thought we agreed we weren't going to eat that tonight during the week. You know, I thought we weren't going to have that cookie. Or I thought we were going to exercise today, or, you know, whatever the self help category is and the beating ourselves up about it, which I'm pretty good at and I could work on, it's rarely effective. And maybe that's another lesson we can take away from this. Thank you, Dr. M. For making us better people. Somehow, I love it. [00:57:51] Speaker B: The funny thing is that mom, as a parent, would have done well to learn that lesson. The amount of times she would say, didn't I tell you? Like, yeah, well, so I think it's sort of funny that that reverse lesson is applying to our care of her. [00:58:05] Speaker C: Comes full circle. [00:58:07] Speaker B: Sure does. Sure does. [00:58:09] Speaker C: All right, you want to do our. Our salutation? [00:58:13] Speaker B: Yeah, I. You're already listening, so we appreciate you. But I bet others could benefit from this podcast if it's not one thing. It's Joanna. So please, like, listen, share, subscribe, all the things, questions, comments, concerns. You can email [email protected] we love feedback. And also, if you have ideas of something you'd like us to feature on the pod, you if you have a story to tell that you think would be interesting. We want all the things, so bring them. How's that? [00:58:49] Speaker C: Well said. And as always, here's mom to play us out. We'll talk to you next time. [00:58:54] Speaker B: Whatever capacity that might be that I [00:58:56] Speaker C: can find in our recording sound will occur. We can't guarantee what kind it will be [00:59:04] Speaker A: to see the dream and everyone need to be and when the river always likes the river? That's the place we're gonna be? Tomorrow is somewhere over.