Episode 22: Jim Mangi's Dementia-Friendly Cities of Hope

[00:00:03] Speaker A: When you see one or two pain. But to be the unusual, and you are only. [00:00:31] Speaker B: I think it's important that you share with the audience what your birthday gift to yourself was. [00:00:37] Speaker A: I mean, they're going to be so excited and jealous because they're going to want one. You know, I think we've discussed before that I'm a tidy person. I like things in order and clean. And I have not a large deck in my backyard, but, you know, substantial enough that every year, the beginning of the season, I scrub it with this hand scrubber thing that is just so hard. And so I think last year I borrowed my neighbor's power washer, and that was just a game changer, and I loved it. And this year I was thinking, oh, well, I'll borrow it again. But now I'm starting to feel like a freeloader. And so I thought, well, I'll rent one. And then when I went to look online at the price of renting a power washer, I could buy a little one for, I don't know, I think it was like, $85. That's less than two rentals. So now I'm obsessed with my new baby power washer. And I do have to tell you, though, that I had a funny interaction when I was trying to put it together. Want to hear about it or am I already boring you with the power washer story? [00:01:36] Speaker B: I'm sorry, you just lost me there. What was that again? [00:01:39] Speaker A: I had an. Do you want to hear about my funny interaction with my Amazon delivery guy? [00:01:46] Speaker B: Yes. [00:01:47] Speaker A: Okay. So I bought the power washer at Lowe's and I was trying to put it together in my garage, and it was complicated and it just should have been easier. And I'm trying to twist things on, and my hands are hurting, and I'm kind of almost near tears at the point where the Amazon delivery guy comes by and he says, oh, that looks complicated. And I said, yeah, it shouldn't be this complicated. I'm going through the directions and I can't figure out which piece is which. And he said, I think you should put the directions away and trust your instincts. And I did. And he was right. I figured it out right away without the directions, and now I'm on a power washing frenzy. So yesterday I came over and power washed the first half of mom's deck, which is, you know, old, not easy. And today I have to do the second half, but I'm in. [00:02:36] Speaker B: That was pretty wise words of wisdom from the Amazon delivery guy. It. It also, it's. It goes in Line with what I've tried to get better at, because I also get to be a little bit. I'm different than you. Like, I'm also very meticulous. Type A, but in. But in spots. Like, I'm not type A all the time. I can be incredible. Like, you walk it. You would walk into my apartments through the years. On a given day, you'd walk in and be like, wow, this guy's kind of a slob. On other days, you walk in, like, oh, he's a little bit too anal. That's a little bit weird. Everything's so clean. But when I attend to it, I'm very military about it. But that also applies to technology. And I often, like, really want to understand how something works. And if something's wrong, I need to talk to the customer service and get into the details and work through it. But, like, over the years, it's a cliche, but it's very true in technology, sometimes you just let it go, step away, or just do a reboot or even just do nothing. And sometimes it just kind of magically fixes itself. [00:03:39] Speaker A: Yeah, I was way in the weeds on this, and I needed to walk away. And then when I came back, I was like, I think this goes here and this goes here. Wasn't that complicated. Now it works great. [00:03:48] Speaker B: I had that yesterday. I went to meeting, connected to the WI fi while we're at a coffee shop, and somehow wires got crossed. When I came back home to connect to WI fi wasn't working, I started to stress a little bit and get agitated. And then I was like, all right, I'm just going to walk away. And then an hour later, another reboot. Everything just kind of fixed itself and came back home to papa. [00:04:14] Speaker A: So maybe it is, I don't know, the universe's way of telling us, take a step back, calm down, you'll be fine. [00:04:26] Speaker B: And I'm going to just use that as a segue, even though it's not. It's not a very segue into, how [00:04:31] Speaker A: are we going to segue? Because nothing. [00:04:32] Speaker B: And by the way, we're way over time because our talk is so long, because it was so good. It was very hard to not let this one go long. But it doesn't matter. You guys are going to enjoy it. And I feel like that's one of the words of wisdom that we're going to get today from Jim, is that you can't really. Some of these things aren't fixable, and you have to realize that this is just a situation going on. And treat it as such. And try to let yourself not get too agitated, too angry about these things. He'll talk to you about some of those tactics in a second. But I thought you should just tell our audience, I mean, you're the one who met Jim originally. How did you find him? And I think that's an interesting story. [00:05:15] Speaker A: Well, I mean, back to the dog park. Every connection, everything's done. [00:05:20] Speaker B: Okay. We're gonna have to have like a series, a micro series. And the only theme of the series is we're not gonna mention the dog park. That's the only thing. That's the series coming up. [00:05:28] Speaker A: Or we just completely embrace it and start recording from the dog park. Because I feel like that might be actually really delightful. So I'm at the dog park and I meet Julie Lowenthal from the Area Agency on Aging, and she is slashing ways now. Age ways. Yes. Thank you. And she is telling me, oh, you really? Have you heard about so and so? Have you been in touch with so and so? I mean, she's got so many resources for me, and she's just fascinating. And she says, oh, you need to talk to Jim Manji. And so of course, I look him up. And Jim Manji is, you know, in many ways, kind of a little bit of the real life story of the Notebook. He's. He's Noah. So of course I mentioned that to you. And what's your response about the Notebook, Andrew? [00:06:13] Speaker B: What was that about again? [00:06:15] Speaker A: Yeah, exactly. You've never seen the Notebook or you [00:06:19] Speaker B: can't recall, but I just remember the parts with gosling and Rachel McAdams. Right. [00:06:24] Speaker A: Yes, but I'm not going to spoil it by saying that there's an entire. [00:06:28] Speaker B: I don't remember the story. I just remember there was some touching romance that people really liked. [00:06:32] Speaker A: Yes. And then there's an Alzheimer's component to it. A pretty significant Alzheimer. [00:06:37] Speaker B: Don't remember that at all. [00:06:40] Speaker A: Did you miss that? It's sort of the whole, I didn't love the movie. [00:06:43] Speaker B: So it's not surprising I didn't retain all the details. [00:06:46] Speaker A: God, I don't even know what to say to you about that. We're going to move on from that comment. In any case, Jim Mangee is this incredibly accomplished man who lived in D.C. virginia area, had a very big position as a chemical engineer. I believe he'll get into that more with you and his wife. Both extremely educated, productive of hardworking, intense, in some ways, individuals. And his wife ends up with an early onset dementia diagnosis, and he becomes her caregiver and from that experience goes on to do really incredible work in the Alzheimer's communities. And I'm not going to say more about it because his explanation of his relationship with his wife, his care of her and then what he's done since then speaks for itself. I just feel really touched to have had the opportunity to speak with him. And you know, when you and I get a suggestion for someone to talk to, one or both of us will do a pre meeting with them just to see is that a good fit. I was already teary in the, you know, 15 minute conversation I had with him before we interviewed him, but also just delighted with his, his humor and his warmth and his commitment and his story, which is beautiful. And so I think we should jump in. [00:08:15] Speaker B: Let's jump in. All right, we will be right back. In the meantime, here's mom. [00:08:28] Speaker A: If I were bell I've ringing a really vicar and I've done that for all the things and I know it is only for you and will tease. [00:09:00] Speaker B: And we are back with Jim Mangee and we're just talking about how extraordinarily hot it is in southeastern Michigan today and I guess in northeastern Michigan. Is that where Alpena is? [00:09:10] Speaker C: Northeastern, exactly. Right. Yep. [00:09:12] Speaker A: Is that where you are, Jim? Are you in Alpena right now? [00:09:14] Speaker C: No, no, I'm, I'm here in Saline. But I had a very nice conversation with someone up in Alpena who wanted to do some dementia friendly community work. [00:09:24] Speaker B: Interesting. [00:09:25] Speaker C: So I was happy to help her get started with a memory cafe and with a dementia friendly movie and dementia friendly community efforts all up there in that lovely small city up there. [00:09:38] Speaker A: Well, since you have jumped in, we are beyond grateful that you are joining us. Can you, can you tell us a little bit about. I mean, we want to dig into your life experiences, your work experiences. What got you into the field of dementia care. Let's start there and then we'll work our way to the cafes because I'm fascinated by all of this. [00:09:58] Speaker C: Okay, how did it start? Well, I have to tell you, my friends that my first career as an environmental scientist and a business owner of a nationwide consulting firm and a federal government contractor, that first career in no way prepared me for my second, my very unexpected career as caregiver for my wife. And that career began about 18, 19 years ago when she threw me out of the house. Not really. That really happened for the reason that most wives throw husbands out of the house. No, not for that reason, but because I had broached the subject to her that it looked like she was having some memory difficulties and maybe we ought to check with our doctor. And she threw me out of the house because she said, you're accusing me of being senile. All right, now, that. That was the official beginning of my dementia journey. [00:11:04] Speaker A: And at this point, she's in her 50s. [00:11:06] Speaker C: Yes. Kathleen was about 57 years old when this happened. It turns out that she was. She did have younger onset Alzheimer's disease. It took a while for us to get the official diagnosis, and her journey lasted 17 years. Kathleen passed about a year and a half ago, and I was able to take care of her for most of that time all by myself. In the later years, I did move her to a memory care facility because as a solo caregiver, I could not safely take care of her alone. She did well in the memory care facility, and I realized that doing that is not an option that's available to everyone. And my heart goes out to folks who don't have that kind of resource physically or financially available. But I was grateful that I could hire a professional team to help me take care of Kathleen. 24 7. And in that space, when I was still Kathleen's caregiver, but also returning to being her spouse, to being her partner, not just solely her caregiver in that space. That was the time frame in which I said, you know, okay, this has been a hard journey for the last 10, 12 years. And I felt that I had learned a few things, and I had come across a lot of other organizations and information. And then I just said to myself, I have to see what I can do to help other people who are on this unwelcome journey, especially folks who are earlier on in the journey. So that was the stimulus, if you will, for forming this organization, this nonprofit that is now called Dementia Friendly Services. And our objective, this is a little nonprofit. We are independent of anybody else. We don't have any. Not only, no affiliation with any government agency or any other entity. We are focused solely on doing what we can to help people living with dementia and their care partners to live in their community, whatever the city, town, county, it is to live in their community with less difficulty and more dignity. And that is how it got started. And that is, frankly, how I spend the vast majority of my time these days. [00:13:32] Speaker A: Amazing. It's amazing. So you. You and your wife were both professionals in D.C. virginia area for, I mean, decades, I assume, before you moved back here, Is that correct? [00:13:44] Speaker C: That's correct, yes. [00:13:45] Speaker A: And then you chose Celine because your daughter was here, I believe. Is that Correct, Yes. [00:13:50] Speaker C: Daughter had gone to college and moved to California, taken her first job. She was in graduate and met a young man from Southern California. And I figured, okay, they're going to be there and Kathleen and I are going to be in Virginia and. Okay. Well, it surprised me that my son in law by that time got a job offer here in Ann Arbor with the university. It further surprised me that he said, yes, you know, from Southern California. Okay. So once they came up, daughter and son in law and settled in Ann Arbor and were happy there, then it made sense because that is our only child, for Kathleen and I to move up from Virginia so that we could be here as Kathleen's journey continued, so that we would not have become isolated in Northern Virginia. [00:14:40] Speaker B: That's amazing. Jim, you said it was about a 17 year journey of you caring for her with her disease. How many years total were you with Kathleen? [00:14:51] Speaker C: 49. [00:14:52] Speaker B: 49. It's a big chunk of those 49 years. Years you were having. I'm sorry, it was a big chunk of those 49 years that you had to do this. Can you tell? I mean, and again, if we're getting too personal at any point, just tell us. It sounds like you're such an open book about your past and your experience and it benefits so many people and we're so appreciative that you're willing to share the story here. Can you tell us a little bit more about Kathleen and who she was before the disease and what she was about? [00:15:21] Speaker C: Yes, indeed. Certainly. I met Kathleen in graduate school. We were both environmental scientists. And during the course of our careers, we sometimes worked in the same company, sometimes we worked for competitors. She spent some time, a lot of time, working for the federal government. In addition to being a very, very hard worker, she was the kind of person that everybody came to her in the organization or the agency because they knew she'd get stuff done, whereas other people in her department, whatever, were retired in place and that kind of thing. So she was, she was the person. She was the go to person because she got things done. But in addition to the professional life. Oh, my goodness. She was a, an avid tennis player. I mean, I'm, I'm talking about playing tennis two or three times a week. [00:16:10] Speaker B: Me too. I grew up playing tennis. Wonderful. [00:16:12] Speaker C: 40 years. So she was. Now you'll, you'll know this better than our group in the, Obviously in the amateur leagues are ratings. [00:16:21] Speaker B: Rankings. Yep, absolutely. [00:16:22] Speaker C: Rankings. So she was like a 4.5 or something like that. So she was in a scale of 5. I believe the ability. [00:16:29] Speaker B: Yes. Those are ratings. Yeah. And then players are also. There's some. A list of rankings as far as hierarchy within. Within. Yeah, the ratings are a big thing. [00:16:38] Speaker C: So she was a serious tennis player. I mean, she went with her team. She played doubles and singles, but with her doubles, she went to the state championship a couple of times. Wow. And yeah, she was really, really serious about that. In addition to that, she was serious about things like bicycle riding. And that's something we enjoyed together in Northern Virginia. There's a lot of really good bicycle riding along rail trails and along the Chesapeake and Ohio Canal. We did lots of bicycle riding just about every weekend that we possibly could. And then Kathleen was also a Sweet Adeline. She was a member of the Sweet Adelines Chorus. [00:17:16] Speaker B: In fact, I don't know what that is. Karen seems to know. [00:17:19] Speaker A: I do. [00:17:20] Speaker C: Okay. Sweet Adelines are a woman's chorus. It is an international organization. And there are local Sweet Adelines based [00:17:29] Speaker A: on Adeline from Guys and Dolls, who is a chorus girl. [00:17:33] Speaker C: Typically, they give community concerts a couple, three times a year. But then they also compete against other Sweet Adelines groups on an international basis. And Kathleen's Horace went to the international competition for the Sweet Adelines a couple of times in addition to that. And perhaps I should have said this first, really, Kathleen was a wonderful mom. We were only blessed to have one child, but Kathleen was a wonderful mother to Charlene and she was devoted. If we had any arguments, Kathleen and I, and very few, it was typically about how best to take care of Charlene, our daughter. And it was always a well intentioned. Well, I think this would be better. You know, we were. She was an absolutely devoted parent. She was very, very generous. My wife was, when she. When she could. In all the other things that I just talked about. Right. She was also a volunteer, a teacher of English as a second language, a large immigrant community in Northern Virginia area. So there were a lot of folks who could use some help. So in just a little bit of a sketch, I don't know how many minutes, but it's hard to condense Kathleen's 74 years into just a couple minutes. [00:18:48] Speaker B: Well, you did a great job. And I just wanted to ask you because when you're talking about her athletic ability, it brings to mind something we've dealt with with our mom. And I'm curious to hear what happened with Kathleen's situation because our mom was always an avid swimmer and she. We would be on vacations and it would be 40 degrees outside, she'd be in that pool, damn it. She would be swimming those laps no matter what. [00:19:10] Speaker A: She was in Lake Michigan in June. Nobody's in Lake Michigan in June. [00:19:15] Speaker B: Tough bird. Tough bird. [00:19:16] Speaker A: Yeah. Not just dipping a toe in, like full on swimming. [00:19:20] Speaker B: And as she started to get into her dementia life, she obviously started to slow down a little bit with some of the activities she was doing. But like, when she would visit me, she would visit me when I lived in Los Angeles a few years ago and we had a pool in the building that I lived in and brought her down to do some laps. And she was moving slow then, but she could still kind of move around the pool and. But at the end of. And I was keeping a very close eye on her. I'm also a trained lifeguard. I was ready to save her if need be, but she was able to move around. But at the end, she was at one end of the pool and it became clear she didn't really know where to go, like to get out of the pool. And she was just kind of holding onto the wall and it was fine. I just guided her out of the pool and got her up and everything was okay. But that was kind of the end of day the, the, the swimming attempts at that point. How was that transition with Kathleen? Was she still playing tennis as much or doing some of these activities once this all started, or was it a quick drop off? [00:20:17] Speaker C: No, it. Well, since I didn't play tennis with her, I only had the reports, but it seemed to me that it was declining. Her physical ability, but also especially playing doubles requires a good deal of cognitive involvement. [00:20:32] Speaker B: Yes. [00:20:33] Speaker C: So I think it was a combination of physical and cognitive decline. She just didn't enjoy playing tennis nearly as much, so she had to stop. The same thing happened with one of the other things that I didn't mention, her photography. Kathleen was an accomplished. [00:20:52] Speaker B: What didn't she do? What didn't she do? [00:21:00] Speaker C: She was. She was extensively trained. She was professionally trained, but never made her living as a photographer. She always just enjoyed. Always had her camera with her, and it was always black and white. And this is going back now. This was a film camera. Okay. And she would develop her own black and whites. I built her a dark room, and her subjects were places, buildings, architecture, scenery. We would go bicycle riding. I mentioned that a moment ago. But she would always have her camera with her. And on several occasions, occasions I would be discover that I'm a quarter mile in front of her because she stopped to take a photo. [00:21:38] Speaker B: Right. [00:21:39] Speaker C: So, okay, I go, I go back and, you know, they're great, great photos. But she was well trained in camera and photography. But as digital came in, she couldn't handle that. [00:21:51] Speaker A: It's a whole new stuff. [00:21:52] Speaker C: She didn't like it as much. And. Okay, one can get into that argument the same way you can argue about CDs and vinyl and all that kind of stuff. But I believe the issue was the complexity of dealing with digital photography in terms of, you know, all the different parameters, you know, in the camera, as opposed to really dealing with the lens and stuff like that. So she had to give up her photography. And I know that bothered her. [00:22:20] Speaker A: You know, it's. [00:22:21] Speaker B: Sorry. You mentioned that you got kicked out of the house, which is, I'm sure, not an uncommon situation in these situations. And I imagine at some point you returned to the home and you had some hard discussions. But I'm wondering. And at that point she was in complete denial. It sounds like in that moment when she kicked you out and. Cause we've also noticed with our mom that it was a pretty short window of time from, okay, something seems amiss. And she, I think, is aware. Even though she might deny it, she seems aware of it. And then to the point where she's now in that area where it's not even worth talking about or bringing it up to her. Cause she just, just. There's no point. And you don't want to remind her that she has a condition and cause her pain. Like, was there any window of time where Kathleen recognized that something was going on and refused to kick you out of the house anymore and said, like, okay, I think maybe I need some help here with something? [00:23:12] Speaker C: No, Kathleen, as you guys probably know, the. The. The degree, the depth of self awareness varies all across the spectrum. Among the 7.4 million Americans living with Alzheimer's, Kathleen. Kathleen was swimming in the Egyptian River. You know, denial. [00:23:32] Speaker A: Yeah, yeah, yep. For sure. [00:23:37] Speaker C: At first I thought it was intentional. At first I thought it was. She was actively, you know, consciously denying that she was having any trouble. And even though she knew it, she [00:23:49] Speaker B: just wouldn't admit it, you're saying. [00:23:50] Speaker C: Right. But also, there is the organic issue. The. The disease sometimes does damage the brain's ability to be aware of its own condition. Basically, the brain forgets that it is getting forgetful. [00:24:07] Speaker A: Right, right. [00:24:09] Speaker C: It's called. It's called anosinosia or something like that. [00:24:12] Speaker A: Oh, yeah. [00:24:12] Speaker B: Discussed this. [00:24:13] Speaker A: Oh, yes. [00:24:13] Speaker B: On a recent episode. We just learned it ourselves. Yes. [00:24:16] Speaker C: So. So whether Kathleen was actively denying or whether it was an organic issue or some of each, I don't know. But she never. There was never a period when she could verbalize and say, oh, I need help. In 17 years, there was exactly one time when she turned to me and said something to the effect of, what's wrong with me? And that moment was just that. It was a moment. It was. It wasn't a day. I didn't even have a chance to have a discussion with her because that moment occurred in memory care, you know, So I could fudge that one. I didn't have to discuss the name of her condition. I could reassure her that, sweetheart, whatever's going on, my friends and I here are going to take care of you no matter what. And that's what we pretty much tell everybody. If a person. And I have a good friend who was living for many years with Alzheimer's, and the first thing he would do, hi, my name is Tom, and I'm living with Alzheimer's, I mean, he was absolutely right out there and open, and that's great. Bless him. But the important thing is not whether a person can name. Can identify they're having a problem or name their diagnosis. The most important thing is that they know that they will be taken care of. They know that there is someone who will keep them as safe as possible. And beyond that, they don't need to know the name of the disease. Now. Now, if they're able to ask, okay, but it's not a matter of denying it to them. But neither is it a matter of pushing it on them and saying, you have to recognize. No, you don't have to recognize. [00:25:51] Speaker A: Right. [00:25:52] Speaker C: I just want you to know that we are here and we will take care of you no matter what. [00:25:57] Speaker A: Yeah, that's a really important distinction because we've talked a lot on the podcast about, you know, not reminding people or not saying, well, don't you remember? Or this is what's happening. You know, we've really had to go through our own learning curve, and we've shared that with our listeners, that there's no benefit to identifying something and picking it apart and saying the same thing potentially every single day. That's just beyond upsetting. Then somebody has to live through that over and over and over again. And it was interesting, as an aside, that our father also struggled with dementia at the end, and much of his was. He had a lot of physical issues, physical health problems that probably exacerbated the dementia issues. But he was also a deeply intellectual person. He was a professor. He also played tennis, an avid tennis player. He also was a Photographer with a dark room in the basement. I mean, when you're describing your wife, I think so much about. And also just an outstanding, outstanding parent. And I remember thinking at the time, and then kind of learning a little bit about this as we went along, that we've been kind of. I've learned that sometimes people with a very high intellectual capacity end up being their, their dementia related symptoms are more severe and more obvious because you know what they're cap of doing and you know what they've stopped doing or are attempting to stop doing. [00:27:19] Speaker C: Yeah. And it is unfortunately so diverse. And you, you guys have heard this mantra many times. I'm sure if you've met one person with dementia, you've met one person with dementia. And we can make generalizations, but all generalizations, including this one, are dangerous. There's some truth to it, but we really have to keep in mind that every person is a distinct person. Even when they have Alzheimer's or one of the other dementias, having the disease doesn't turn them into victims, it doesn't turn them into sufferers, it doesn't turn them into patients any more than you and I. Yeah, I'm a patient of my dentist, but not at the moment. You know, I'm not in the waiting room. I'm a person. And that indeed your dad and your mom and my wife, until the very last breath, are persons. [00:28:17] Speaker A: Yep. Andrew, I believe I told you that Jim Banji was gonna make me cry. And you've already started, so. Yes. [00:28:25] Speaker B: Good job. [00:28:26] Speaker A: Yeah, good job, good job. [00:28:28] Speaker B: Not even a half hour in tears already. It's not surprising. She's more of a tear jerker than me. Jim, I'm not cold. I'm just, just hardened, I guess, in some way against it. Tell me a little bit more about this switching gears to maybe something lighter. This dementia city designation fascinates me. And I hear you've already worked on getting Celine this designation and you're talking about helping other cities do this. What does a city have to do to get a dementia designation? [00:28:57] Speaker A: Dementia friendly designation. [00:28:59] Speaker B: Dementia friendly. The city. You don't want any dementia city. Right, Dementia friendly. That's a very important distinction. What is that? [00:29:08] Speaker C: The idea of a dementia friendly community is it's a non governmental thing. It's a grassroots movement. It is, it gets some guidance from a non profit called Dementia Friendly America, which is like two people and it gets a little bit of government funding, but it's, it's strictly a nonprofit. The idea comes from the uk. The idea is that as much of the community, that is to say the municipal government, the business sector, the faith community, the residential community, services, as much of the community as possible, comes together in some sort of a task force, what have you, and just says, okay, let's each of us learn about dementia, learn about the difficulties that people with dementia have when they're out in the community. And let's adopt policies and practices and techniques and tools that enable us to work with people with dementia more, more respectfully, more effectively, whether they are taxpayers or customers or clients or members of the congregation or members of the Rotary Club, what have you. So it's a, not quite informal, but it's not a government mandate and it's a collective, a group effort by a community. And once some sort of a critical mass of a task force, committee, whatever that represents, a good cross section of the community, once that has coalesced and they come together and said, okay, we are going to work together, we're going to help each other, we're going to sponsor presentations and we're going to help one another. Learn how to send an application, you know, eight pages, not a huge thing. They send an application to Dementia Friendly America that says, okay, we the city of Saline and the, and the business community and the faith community of the city of Saline, we have banded together to make Saline a dementia friendly community. And Dementia Friendly America comes back with, okay, you are now certified, which means you can say so you can say it on your logos and you get to use the Dementia Friendly America logo and you get to be part of the Dementia Friendly America community group. There's 400 dementia friendly communities around the country in almost every state. And that users group, lots of really good information. There's always somebody saying, does anybody know how to, has anybody dealt with. And there's always a lot of, of cross talk and it's really, really good. So the community of Dementia friendly communities keeps learning from its members. Now here in Michigan, I worked with the municipal government here and with the faith community and the business community here years ago and we got Celine to be what was for several years the only dementia friendly community in the state of Michigan. We've changed that now. We here have worked with folks in Rochester Hills, in Portage, over by Kalamazoo, and in Independence Township, at Clarkston, I guess, I guess that's Oakland County, I think, right? And then as I said a few minutes ago, we are working with Alpena, we are working very, very actively with Milan, which is south of here almost in Monroe County. We're working very actively with the City of Chelsea, the city of Dexter, the city of Manchester, and the city, let's see, the Village and Townsh, Milford and also with Lyndon up by Flint. [00:32:48] Speaker A: Right. [00:32:49] Speaker C: And that's, that's just the active dementia friendly community efforts that we have going on right now. [00:32:54] Speaker B: That's fantastic. I mean, one thing that comes to mind in, and maybe correct me if I'm wrong, if this type of work is going on, but you know, because I have, I've been developing my own senior care advocacy service with my partner Kelly, who ran the facility that my mom was in when she was briefly in an association assisted living home. And we're helping families and communities deal with this coming onslaught of baby boomers getting older and there being this flood of the aging population that undoubtedly will also have dementia challenges. And one thing that we discovered which is very useful and hopefully important in the future is to make sure that police and fire departments and local communities are trained on how to deal with somebody they encounter that is clearly having a dementia episode. The obvious ones are walking naked in the middle of the street for no reason and that they don't understand. But there are other, a million different degrees of things that happen that might cause a disturbance that might lead to a call to police or fire. And these guys obviously are incredible law enforcement people and first responders that know how to physically care for people. But like when you're dealing with someone who has dementia, there is an additional set of skills that you have to acquire that aren't readily apparent. And I'm wondering if any of that work is going on in some of these communities as well. [00:34:09] Speaker C: Yes, exactly. Because it is so important. We have done some, we have provided some training, a dementia friendly training to some first responders. There are training modules available for first responders from the Alzheimer's association. And those, those modules are good and they deal with things like the wandering. And of course that's a huge, huge problem. And we provide some ideas about how to deal with it and also ideas how to minimize the risk. For example, we encourage police departments to encourage residents to go ahead and have a wandering kit ready. You know, that wandering kit will be a description already written out, a description of the person, and maybe a checklist for the kinds of clothes they wear, a description of, a written description of where they like to go and hang out, and a picture, a current picture, so that this kit can be given right away to the first responders. And we want police to encourage people not to wait the typical 24, 48 hours for a missing person because A person at high risk. A person with dementia is a person at high risk. You don't wait 24 hours. You get into action right away. Okay, but this is so important that it's beyond my pay grade. It is so important that there is an initiative at the Michigan state level to mandate. It's not law yet, but it's working its way through to mandate at least some training in dementia awareness for all first responders in the state of Michigan. So we are hopeful that that will pass and that will be accomplished. There is support for that, not just from the Alzheimer's Association. The Michigan chapter is a very, very active chapter, and I work with them a lot. But also the Dementia and Brain Health Unit of the Michigan Department of Health and Human Services. That's a new entity. It didn't used to exist two years ago. Right now they have a huge budget of $400,000. Which is peanuts, right? [00:36:23] Speaker A: Exactly. [00:36:24] Speaker C: But at least it exists. It was zero a couple years ago. And the good folks in that unit, I think there's only two folks so far, they are making good progress in trying to raise dementia awareness statewide. [00:36:37] Speaker A: Wow, that's incredible. You mentioned before, and I found this out when I did my research on you. Can you tell us about the memory cafes? [00:36:49] Speaker C: Ah, yes. Okay. A memory cafe is a social event for persons living with dementia and their caregivers. The idea is that it's typically an afternoon, sometimes morning, but afternoon is a sweet spot. Spot. An afternoon opportunity for the caregiver and their loved one to get out of the house, go out to maybe literally a restaurant's back room or a library's community room, or the most common venue is a church social hall, a public place where there are other people living with dementia, other caregivers, other persons with dementia, so that everybody in the room is on the journey, so there is no fear of embarrassment, no fear of judgment. Everybody's there on equal terms, and everybody's there just to have a good time. Memory cafes typically run an hour and a half, two hours. They're almost always free, and they vary all over the place, I can tell you. Hours is a good example. Our cafe operates in the church social hall and part of the time is a live music. We hire local musicians of various genres. Yeah, we have. Okay, we have the whole spectrum. We. We have Mary and the husband. She is a vocalist. He plays guitar and they play that title. Oh, yeah. He is the husband. Right. [00:38:12] Speaker A: Amazing. [00:38:13] Speaker C: And. And they'll. They'll. They'll play all sorts of folk and rock. We have Matt Ball plays the boogie woogie piano. We have another pianist who does honky tonight. We have several other vocalists, guitarists. We have harpist. My gosh, she. You've never heard harp music until you've heard Broadway show tunes on a harp. [00:38:34] Speaker A: Oh, my gosh. It's our mom's favorite. [00:38:38] Speaker B: She would love it. [00:38:39] Speaker A: She'd love it. [00:38:40] Speaker C: It is wonderful. Absolutely wonderful. And, you know, I. I have to tell you that because we've got these. This music going, we have had incidents of. Of spontaneous outbreaks of infectious dancing. [00:38:53] Speaker A: That's amazing. [00:38:53] Speaker B: I believe it. [00:38:54] Speaker C: In fact, we had one young musician was playing for us for the first time, and he's intent on playing. And he looks up, and he was a little bit surprised to see about 30 older adults, some living with dementia and some caregivers doing a conga line, all weaving their way through the social hall. He just went with it, you know. But he asked me afterwards, he said, is the cafe always like this? I said, no, sometimes they have a really good time. [00:39:23] Speaker A: Such a great idea. So you just find local places who are willing to sponsor, and it can be anywhere. It doesn't have to be a designated place. [00:39:33] Speaker C: That's right. No, we. In fact, we're in our second social hall because we outgrew the first one. We started our first cafe in my little church here in Saline, and the pastor was very welcoming, but. But after a couple years, we just had so many people coming that we could not safely accommodate them. So we went down the road and talked to a couple other churches, and a couple other churches said, y' all come. And we. We settled on one that was the most accessible in terms of steps and entrances and all that. We've been very happy there. But we have also started another Memory Cafe in a different part of town. So we run one Memory Cafe twice a month in the south west of the Ann Arbor area. And we've started another Memory Cafe in the northeast corner of Ann Arbor in yet another church's social hall. [00:40:24] Speaker A: Incredible. [00:40:26] Speaker C: Now, our main cafe, the first one, which is. Which is called Come as you are Memory Cafe. So after the music, we have social time all the time. We have snacks, and then we usually have some kind of an engagement activity. And that'll be something like a chair yoga chair exercise or games or something like a drumming circle or maybe an art project. You know, at Halloween, we do wacky pumpkins and things like that. And we've built some really interesting things. Not kid stuff, but really, it sounds [00:40:58] Speaker B: like day camp for dementia patients, basically. [00:41:01] Speaker A: That's amazing. [00:41:02] Speaker C: Yeah, well, yeah, and we. We did a few things. It was a little dicey. We. We weren't quite sure, but we talked to a professional and they said, give this a try. So we did balloon animals and balloon art, and she knew what she was doing. She was really good. And all of the people with dementia and the care partners, they really got into it. So we got pictures of people being really ridiculously silly and having a wonderful time. But more substantively, we did flower arranging one time and with real flowers and real florists. So we had flowers and all that. And we thought, okay, this is going to be something for the ladies. And the guys aren't going to like this. Oh, no, no, no. We were wrong. The guys did the best job of making flower arrangements. They really, really got into it. And that one, that cafe was a hybrid cafe. We had some in the room and some on Zoom. We had. We had a couple, and we had told them ahead of time that we were going to do the flower arranging. And. And the wife had gone out and bought some flowers. They were in Traverse City, and we were down here in Saline. And we have cameras and everything, and we have a big TV so that the folks in the room can see the people on Zoom and cameras so the people on zoom can see the room and microphones back and forth. And we have pictures of this gentleman who was living with dementia up in Traverse City, not just following along, but proudly presenting the flower arrangement that he had made. My gosh, we were just blown away by that. We just have so many wonderful experiences with people with dementia and their care partners just having all sorts of a good time at the Memory Cafe. Look, I told you about the games, right? Okay, so we play a game, penny ante. We call it. It a bowl of poker chips in the center of the table, six or seven people sitting around the table. Everybody starts out with a few chips, and then there's a bunch of questions, and you rotate answering questions. Questions like, okay, take. Take two chips if you've ever been skydiving. Okay, great. Give up a chip if you've never been out of the state of Michigan. Okay, well, the objective of this game, of course, is socializing. You know, you get to know people and you don't have to continue with the game. You just start, have a conversation. [00:43:26] Speaker A: Right, right. [00:43:27] Speaker C: Really? Where did you go skydiving? How old were you? When you're. All right, so these games are really fun. One time we had an intergenerational cafe. We had college students from the U of A. And they had a blast helping out. You know, they helped out with shepherding people around and with their snacks and the refreshments and schlepping the drum circle around. Okay. But the kids are sitting at the table. [00:43:50] Speaker A: They're. [00:43:51] Speaker C: They're participating in the game. And the question comes up. You'll love this. The question comes up, take two chips if you've ever been skinny dipping. We ran out of chips. [00:44:02] Speaker A: Got a feisty. A feisty group in your midst. [00:44:06] Speaker C: The kids were scandalized. [00:44:08] Speaker A: I'm sure they don't want to think about that. [00:44:10] Speaker B: It's funny because it's. It's. [00:44:12] Speaker C: It. [00:44:12] Speaker B: We were just. Karen and I were just having this discussion on a previous episode about this very topic of how important these fun moments are for people with dementia. Because if they didn't go, they wouldn't know that they missed something after they're gone, done with it. They probably might not remember they were even there, some of them. But when they're there, they're absolutely feeling joy and receiving something valuable, and that is a great life for them in these moments. [00:44:38] Speaker C: Andrew, you're so right. But let me add, you're exactly right, that the facts of what they did at the cafe yesterday, the facts will fade, but the feeling, the will linger. They will remember they had a good time, even if they don't remember playing the game or who was playing. But talk about playing. Oh, we had a lovely incident a while ago. Eric and Mary, Mary and the husband were playing. And one. One gentleman who's living with dementia. I saw him go up to them at a break and talk to him. And I saw Eric nodding his head. And I saw Eric leave the hall, go out to his car and come back with. With his other guitar, his bass guitar, because the guy who had come up had asked him, if I bring my bass guitar next time, could I play with you? So Eric did him one better. He said, I got one here. Tom, you know, takes Eric's bass guitar and starts playing. So the. The duo became a trio. And. And he was doing a great job playing along. And the most beautiful thing is that this guy Tom, he is smiling from. From ear to ear. And his caregiver said, I haven't seen him smile for months. [00:45:47] Speaker B: Incredible, amazing stuff, Jim. It's just like we could listen to these stories all day long. But I do want to just ask one final question in the last few minutes here. I know you also do these workshops where you help people with all these issues that you're talking about right now regarding dementia. Can you share with us, maybe some of the top couple things that you discuss or tips that you give people that they end up finding most useful when you're doing these workshops. [00:46:14] Speaker C: Absolutely, my friend. One of the absolute key things to get across to everybody, to caregivers, to the community at large, it's a disease, not a disgrace. Whether we're talking about Alzheimer's or frontotemporal or Lewy Body or any of the other brain disease, it's a disease. There is nothing disgraceful about having a brain disease. It's no more shameful to have Alzheimer's disease than it is to have kidney disease. They're both terrible, but neither one represents poor moral choices, lack of character, or anything else. It's a disease. And that is another part of the theme that as caregivers and as people interacting with people with dementia, when they repeat themselves over and over or when they have difficulty with decision making or they get lost, they get confused, or even if they say things that are inappropriate, keep in mind, it's the disease. It's not husband, wife, mom, dad, sister, brother intentionally doing something objectionable. They're not trying to be difficult. They are, in fact, doing the best they can with broken equipment. It's the disease. And once you kind of internalize that understanding that this is the disease, then it becomes easier to follow the mantra, go with the flow. Resist that temptation to correct them. Because you cannot win an argument with a person with dementia, nor do you have to. To a large extent, it is very, very valuable to follow Sir Paul McCartney's advice. Let it be [00:48:00] Speaker B: very well said. [00:48:01] Speaker C: Very well. [00:48:01] Speaker A: Jim said, why did Kathleen call you toad? [00:48:04] Speaker C: My friend, I do not really know. I know that you, in preparation for this wonderful conversation, you sent me that question. And I looked at it and I thought about. I honestly don't know. Here's a theory, here's a hypothesis. But this goes back, you know, 48, 49 years. And by the way, I gave you the correct answer before. We were. We were married for 49 years. We were together for 51 years. But no matter what, if you had asked Kathleen in better days how long we had been together, she always would have said, far too long. Okay, so it goes back way, way, way back. We were both. We are both biologists, and we worked together on some field work and stuff like that. And I have a vague memory that at one point we were out camping or something like that, and there was, you know, a very common American toad there on the pathway, and we almost stepped on him, but we didn't and I remember Kathleen saying, how cute and looking at me and saying, a little bit like you. I think that was the connection. But I'm not real sure that's a good one. [00:49:12] Speaker B: Just go with that story. [00:49:13] Speaker A: Go with that one. It's a term of endearment. It's got a positive spin on it. [00:49:16] Speaker B: We like it, right? [00:49:17] Speaker A: We like it. Jim, we can't thank you enough for joining us today. Your stories are incredible. We could go on for hours. We might have to have you back for a second part to do this again. You've inspired me to consider my mother's hometown of Huntington woods and whether or not they might want to become a dementia friendly city. I love that concept. And I think that the work that you are doing in the community is a beautiful testament to all that you did for your wife, that that legacy continues to help other people who are struggling with this. And we thank you for all that you're doing and for your time with us today. [00:49:51] Speaker C: Well, my friends, you are very, very welcome. I thank you so much for giving me the opportunity to talk with you and for us all to share our experience on this unwelcome journey with so many other people in the hopes that by hearing what you guys are doing on your podcast, and if I can make a small contribution to helping other people on the journey to experience this terrible journey, but to help make it also a thing of beauty. So thank you, guys, very, very much. [00:50:26] Speaker B: Thank you, Jim. Really appreciate it. And we'll be right back after a tune from mom. [00:50:36] Speaker A: When you're gonna have a nice little. Foreign. [00:50:56] Speaker B: And we are back. Wow. Yeah. [00:51:01] Speaker A: I'm gonna say this. Ready? [00:51:03] Speaker B: Ready. [00:51:03] Speaker A: Told you. I mean, he's a delight. [00:51:08] Speaker B: It makes me want to go back and see the Notebook now, which I think I might do. [00:51:13] Speaker A: And you should. You should. [00:51:15] Speaker B: I should. And that that movie that Rachel McAdams is in recently isn't horrendous. I know that's not the best recommendation. [00:51:28] Speaker C: What movie? [00:51:29] Speaker B: It's called Help Me. I think it's called. Oh, on one of the streamers. At least it's being carried on one of the streamers. It might have been in the theater at some point, but if you're a Rachel McAdams fan, which seems to be a micro theme of this episode. Worth the check. Worth the check. [00:51:46] Speaker A: Let me ask you this. If someone said to you, yeah, I listened to your podcast, it wasn't horrendous, would that. Would that warm your heart? [00:51:55] Speaker B: That would not. But if it was in the context of, I have seen Nothing but horrible movies for about six months straight. And I'm dying for even the slightest piece of content in the movie theater genre that might be worth a gander. And someone said, hey, this one, it's not horrendous. I would check it out. [00:52:17] Speaker A: Okay. [00:52:17] Speaker B: And I would get that news. [00:52:19] Speaker A: Can we talk about Jim Manji? What a productive way to face something that is so just gut wrenching and challenging. I mean, taking care of your wife. Not. I know he wasn't in the weeds of it since the diagnosis at 57, but certainly years later and the life change of moving back here to Michigan to be with, you know, near his daughter and the level of care that he provided for his wife, but then also the peace that comes after about these dementia friendly communities and these memory cafes. You know, listen, he could have decided, wow, I spent the bulk of my later years taking care of my wife. I'm going to do whatever I need to do for myself now. And instead, he's doing so much for the community. I feel like these kinds of people really need to be recognized because it's so hard to live in a dementia world, but then to be doing something so thoughtful for others is really incredible. [00:53:20] Speaker B: Yeah. And I feel like he was definitely in the weeds of it for a very long time. The thing with these diagnoses are, and I guess we've seen it with mom, there has been a gradual decline, no question right now versus five years ago is a big difference. But. But once the diagnosis happens, already some weird stuff has been going on to cause you to check it out. So, I mean, 17 years dealing with this, with this woman that he spent his life with, I can't even imagine. And like the thing that shines through, which is so fascinating and probably by why, you know, I feel like we say this a lot with a lot of our guests that are just these amazing people. He seems naturally built to deal with this. He's such a bright, positive person and, you know, you don't feel sad or depressed listening to him talk. And the fact that he's going around trying to dementia proof these cities to make them just a little bit more accommodating to what is going to be an ever increasing percent of their citizens that are going to be dealing with this, pretty amazing. And I also. Another thing that we keep coming back to, which I think is great to repeat over and over and over again, I was happy to hear him say at the end, you know, what are the first things that come to mind to give somebody some advice when you're doing your talks is to remind people that it's a disease. These people aren't trying to intentionally mess with you and, like, make you upset and agitated. They don't remember what you told them to do last time because they've got dementia. And that is. It just needs to be said over and over because it's so important and it's so difficult, even though you know that. It's also difficult just from an emotional and reactionary level to deal with that. And I think that's one of the insidious aspects of this disease, is that it's all inside. Like, you can't for a lot of it until the physical stuff starts to be apparent. You can't tell that someone has dementia just by looking at them. And they might be able to have a perfectly fine conversation with you. And you won't even know it during a conversation until some obvious stuff starts to come up, like maybe asking the same question five times or something. And that's why it's so difficult, because you can't really tell that it's there, even though it's there. And all these other things, like, someone can speak, someone can walk, someone can react to you, someone can smile, someone can laugh. But yet this thing is there. And that's a really tough thing to deal with. I just can't imagine him in that situation, having to deal with it and watch the. The trajectory of it. And, boy, what an amazing man. We're happy to. And lucky to have him going around preaching the gospel. [00:56:02] Speaker A: Yeah, I love that he calls his wife my Kathleen. Oh, so sweet. So sweet. Great interview. So happy for the recommendation. I would have never known about his work or really even about his story. And these are the kinds of stories that I just, just. It's heartbreaking, but also so motivating and inspiring, and I'm really honored to be able to share stories, his story and stories like this on the pod. [00:56:34] Speaker B: Good find. Good find. Keep hanging out at the dog park. We get like a couple guests a month just by hanging out at the dog park. [00:56:42] Speaker A: And also, I love the dog park. I love it, but mom really loves it, which is so fun and so fun. [00:56:50] Speaker B: Yeah. Yeah. Well, you know what? I'll do it this time. We would love to hear from you. You know, if you, like, you subscribe, you share, you talk about it. Even if you think about our podcast, it helps us. So we'd appreciate it if they do that. And if you have any stories or comments or questions, you can email us at. If it's not1gmail.com we hope you guys are all doing great and here's mom to play us out.