Ellen Patnaude - Coach, Author, Speaker, Elder Care Advocate

In this episode, Jason talks with Ellen Patnaude, author, coach, and dementia educator, about her journey as a caregiver for her mother with Lewy body dementia. Ellen shares her experiences navigating family dynamics, systemic gaps in elder care, and the importance of planning for the future. With honesty and humor, this conversation offers practical insights and support for anyone dealing with caregiving challenges or aging parents.

“Plan. Talk to your loved ones, an attorney, and put something in writing. Don’t leave the burden of guessing to your family.”

Ellen Patnaude has always been fascinated by how a person’s nature and lived experiences cause them to interact with others. She is a Detroit native and graduated from Alma College with a BA in Biology & French. She thought she wanted to be Jacques Cousteau, but her first few science-based jobs pointed clearly towards working with people. She worked for several years as a community organizer in Indiana and Ohio. Returning to Michigan in 2005, her reputation followed her for challenging people to see and be a better version of themselves, and the phone started ringing. Since then, Ellen has built an internationally recognized company supporting teams and their leaders in improving everyday interactions.

Ellen is the author of two books, “I Thought You Knew… Confessions of a Chronic Assumer (and How to Stop Guessing Your Way Through Important Interactions)” and “You’re Not Doing It Right: Loving My Mother Through An Unpredictable Caregiving Journey.”

https://patnaudecoaching.com/

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Transcript

Jason Frazell: 0:05

Hey, everybody. My guest today is a very special guest. By way of introduction, I want to tell you she came to me through dear friends of mine, longtime podcast fan and multiple time guest Molly Grisham and Lauren Davis. And you got to know them through some of the work they do with entrepreneurs and you got to meet them. And they said, you need to talk to Ellen because she's got something to say. And I said, yes, please. So my guest today is Ellen Patnode. She is a now two time author. She's a coach. She's a speaker. She is a mom. She's a wife. She is a daughter. And I don't usually say people are daughter. I mean, we're all daughters or sons, but I say that because she's also a community educator for dementia. And her most recent book is about her journey of loving and caring for her mother in a very unpredictable caregiving journey, specifically around your mother's journey through dementia and Alzheimer's. So we're gonna have a, we're gonna have a I think fairly serious conversation about aging parents, but knowing Ellen from a couple hours we spent together, we'll also make it humorous because you just laugh, you'd have to laugh about it. And I was sharing with you, sharing with Ellen, my, my grandmother on my mom's side also had Alzheimer's before she had a massive stroke, and so I got to experience kind of the, What that was like on the receiving end. And then the joy that my grandmother experienced of seeing us every time, like she didn't really know who we were. And so you almost have to laugh about Ellen. I'm so glad we're here to have this conversation and just welcome to show. It's so good to have you here.

Ellen Patnaude: 1:37

Thank you so much. I'm really excited to be here. It's a, it's, it's an honor to be connected to people that are mutual acquaintances that we both think so, think so highly of. So that's. It is.

Jason Frazell: 1:47

So Ellen, let's first by just kicking off and. Other than the introduction I gave, what else do you want the audience to know about you?

Ellen Patnaude: 1:57

Well, I think what's important to understand about me is that I've never been the type of person to shy away from, from saying things that other people might be thinking, but they don't think are totally appropriate to say, or they don't have the courage to say them. I tend to be the person in the room that says them, which in the work I do tends to come in handy because clients appreciate that outside perspective. I also went ahead and did that in this book that I've released because when I was going through this with my mom a terrible relationship going into it and I was desperately trying to find. Something that had been written from what I would call to be kind of my perspective, like where's the hard truth in the middle of all of this? And I just wasn't finding it. I was finding a lot of stuff that had seemed to be curated for social media and public consumption, but it wasn't making me feel any better in the midst of my struggles. And so I wanted to see that reflected out there. So I tried to do that with this newly released book.

Jason Frazell (2): 3:01

Yeah. Thanks Ellen. So, you know, we're, and you just said that you're willing to say the thing. So I'm going to ask you some questions that are going to provide some vulnerability, which I know you're like, yes, please. So I love if you define for the audience, what is a terrible relationship with your mother look like maybe before that? And we don't need all the details, but I'd love to define that. So people, cause I'm sure people go, yeah, that sounds familiar and their relationships with their parents. So what does that mean?

Ellen Patnaude: 3:25

Yeah. So for me it's, I mean, really from what my parents have told me really as soon as I started talking, I started pushing back about wanting to do it my way, do it myself. And the, you know, my mother came from her own background and complicated story that caused her to navigate life with a lot of fear. So she was very controlling of me because. Because I was loud and wild and, you know, very fearless and willing to do all kinds of crazy things that petrified her. And so she lived her life with a lot of fear and tried to, and I know now she was just trying to keep me safe, but what it ended up manifesting as is this lifelong battle of who got to be in charge of making the decisions about how I lived my life. And the older I got, the more committed to winning that battle I became. And it's a battle that lasted right on up through the end of her life. It was not anything we were ever really able to reconcile. And like I said, she had her own challenges and her own story that brought her to that place that I understand. But living in the middle of that, it just looked like Constant fighting. I mean, we loved each other fiercely as well, but there was just, there was a lot of fighting, a lot of arguing, you know, one of we were both determined to, to be right and to win the fight. And so it just was perpetual.

Speaker: 4:55

Yeah. I, one of my. Dear coach friends and mentor of mine, she would, she has a saying and it's common, but she said in coaching, but I'm sure it's the case with, with your mother as well as like, is this the hill you want to die on? And like, and like, Oh yes, every single hill I'm dying on, I'm dying on every single hill. It's like, and I'm sure people are listening to go, Oh my gosh, there's so many hills that we all like from an ego place or the, the power dynamics of like, is this really worth it? What the outcome is. And in the moment you're like, Oh, absolutely. And then after you're just like, absolutely not. And I'm speaking for myself. And you're like, Oh boy, that was way more damaging than feeling, feeling our egos, like for five seconds. You know, this is a coach. Our ego is like, yes, I won. And then you're like, but at what cost, but at what cost. And so we're talking and so you're saying. And I, this is a normal experience for most of us, I think is your, that relationship, you ended up still just being the little girl and your mom feeling like she's still the mom, even when you're, and you say, as you're an adult, I don't know if you were married at the time you had children of your own. It's like, it's like, I'm a grown ass person and yet you're being treated that way. So what was that experience like for you other than creating the fighting?

Ellen Patnaude: 6:10

Well I mean, yes, it, it continued through both of my marriages. It continued through having kids. You know, so it was actually my wife who is the one who had the idea that we should invite my parents to live in this carriage house. We, my wife and I had purchased a farm in a rural small town where her family is all settled and we were moving up there. We were super excited about it. We're a blended family. So our kids at the time were. 11, 12 and 13, I believe in 2016. And and the farm had this carriage house and we had planned to purchase the carriage house separately. It was on its own parcel of land. The previous owners used it for rental. And so Danny said to me, I think we should offer your parents the opportunity to live here. In the carriage house, they'd have their own space, but we'd be able to help because my mother had taken a fall. My dad had been seeing signs. We weren't yet seeing them so clearly, but my father was, and he became quite desperate at the idea that we were moving further away and he would be on his own to handle things. So he had asked for our help. And it was Danny who said, I really think we should offer them the carriage house to live in. And I said, absolutely not.

Speaker: 7:30

You're like, you're like, you're like, what? Hold on a minute. What?

Ellen Patnaude: 7:34

This is legitimately my worst nightmare. And she knew knows me well. So she let me sit with that for a little while until eventually I came back around and said, And and you know, it turned out she was, it was the right thing to do for sure. So

Jason Frazell: 7:50

about

Ellen Patnaude: 7:50

six months after we bought the farm, they moved into that carriage house. So we had a front row seat. My kids had a front row seat. They were at the dinner table with us pretty much every night. And it, there was a lot of fighting. There were a lot of times my father diplomatically would call me and say, I think your mother and I are going to just eat at our house this evening. The fighting was particularly nasty. So yeah, that's kind of what it looked like.

Speaker: 8:17

Wow. Brave. Good job, Danny. I think you're like, Do we have to, you're like, what did you just say? What they're going to move, they're gonna move across the street or down the road or whatever it is. Oh my gosh. Yeah. That is, that is definitely something I was sharing this with you that I'm 46. I'm, I'm starting to have friends that are dealing with aging parents or some of these things where they're moving closer together without a doubt folks that have gone off and done their own thing and their parents have had these like really amazing independent lives. And then you kind of come back. They say it's a really surreal experience of like the reversion of the roles. And that suddenly your parents need a lot more help from you than you do from them. Fin sometimes financially too, which is like a, you know, a very strange thing. So it's and, and part of in our conversation we had offline was the lack of resources around this. Around the support. I have a friend who's dealing with she literally sent me she goes she's dealing her father's 81 She's like, I don't know who to talk to about this said I said that's gotta there's gotta be things and she goes Yeah, but they're like not that helpful and Ellen and I'm you know, I'm literally preaching to the choir here and we're gonna talk about this That's so crazy since statistically most of us will go through this on both sides, both as the caregiver and then statistically here in the United States, we will be, we will be old enough that many of us will need care from our children. So I wanted to ask you something about your kids. And your parenting before we move further, my guess is you are hyper aware of kind of this family of origin story and this mechanism that operates inside of the family with your, with your parents and specifically with your mother. What did you and your. spouse or spouses do to address it? Or did you not? Like, or did you start to recognize similar patterns and have to put it, like, how did you address it knowing like, Oh, this was the family pattern. And most people will tell you, you carry family patterns with you, unless you are very, very specific about that. It stops here and get a lot of therapy, coaching, whatever the thing is. So how did you and your I guess let's talk about Danny, your wife. Now, how did you all address that?

Ellen Patnaude: 10:33

Yeah, that's a great question. So Danny and I have very, very radically different stories of origin. And so she came to this relationship and we, we've been together almost 16 years. So our kids were two, three, and four. When we got, I guess, I guess the older two actually had just turned four and five when we got together. And so they were pretty young. They were, they were pretty malleable still. And when, when we became a family I absolutely had both grown up and said all through my life, I will never parent the way that I was parented. I don't want that kind of relationship with my kids. Classic story for sure. It really was incredibly difficult to envision what a departure from that experience would really look like in practical terms until Danny came into my life because she had had such a completely different upbringing and experience and had been part of helping raise other kids by that point. And so it really was her influence to be honest, she'd probably be. Really embarrassed to say, like, I don't deserve all the credit, but that's just who she is. But she gets a lot of the credit for helping me see in practical terms what it looks like to parent very differently. than how I was parented.

Speaker: 11:58

Did you, did you notice, especially in heightened emotional states, I would assume that your kids or your stepkids, probably some of them might have strong personalities as well, like you did as a child. Did you, were you aware of some of these things coming up once you took a step back and you're like, oh wait, this conversation feels familiar, except it's what I used to have with my mom. And now I'm having it with my son or my daughter. Yeah. So you got, but you were aware of it. Yeah. Yeah,

Ellen Patnaude: 12:25

I, I was, I, I have my, so my oldest child. So the, the two that I birthed are on the bookends, right? The youngest and the oldest, the middle child came Danny. And my oldest son is just like me in so many ways. And so, yep, we butted heads hard often all the time. And I mean, even through his, he's now 20, he'll be 21 this fall. He he still, we are very, very much alike. You know, he went through some incredibly difficult experiences himself. And I was acutely aware that I needed to make sure I wasn't closing off communication the way that my mother's parenting style often did with me. But that I wasn't going too far in the other direction and just taking a completely hands off approach. So I mean, it was hard to find that balance with the child that is the most like me for sure. The youngest one is my opposite. And so and my youngest is a non binary child. So that child who just turned 18 that child and I, it's just, it's an easier, it's just an easier conversation most of the time because we are opposite from each other. But I mean, that has also had its challenges. So yeah, I mean, in real time parenting in the midst of all of these chaotic factors is, and then, you know, we were in the sort of a sandwich situation. We are, you know, the kids were 10, 11 and 12 and my parents are here and I'm trying to, you know, parent my parents and I'm trying to raise my kids cause there's a pretty good spread between us age wise. So, Yeah, it was, it's all very. Very complicated, very tricky. Your friend is right, there are not enough resources out there. For sure. So,

Speaker: 14:10

so, I want to talk about some of the assumptions that people make who haven't potentially gone through this or maybe, sometimes, like I was saying, my, I watched, my parents are, are not in this mode quite yet maybe never, who knows, you know, like, medicine is going quickly and you, you never know, but I saw them go through significant aging, you know, aging support with three of my four grandparents. So a couple things, Ellen, I think the first question is, in your opinion, why are there not many resources out there that can support folks like my friend or for you with aging parents? And there are resources, but it seems like they're not very either. It's like an afterthought or something. And I'm curious why you, why, in your opinion, what's the reason for that?

Ellen Patnaude: 14:58

I mean, the short answer is because it's not sexy.

Speaker: 15:02

It's not, no, it's not sexy for sure.

Ellen Patnaude: 15:04

That's the hard truth. I mean, we, we we put tons and tons of resources into raising kids. Kids are cute. They're little, they're our future. They're bright, they're young, they're fresh faced. Elderly people are the opposite of all of those things. And our culture and society does not value the collective wisdom that the older generation has to offer us. And therefore, we treat them accordingly in terms of how much money we invest in the infrastructure that supports their care in the resources that are available to the people caring for them. And just in terms of like generally what's available, I mean, think about how often programs like social security and Medicare come up on the chopping block because they are programs for the elderly and being elderly is not. It doesn't have the same cultural appeal that being young does and in a society that values youth and looks despairing disparagingly on those that are aging. I think it becomes really obvious why there aren't more resources put in that direction, which is hugely unfortunate. And I feel like a canary in the coal mine because this is affecting more and more and more people and more and more and more of us will be caregivers, unpaid caregivers. And it's it's a growing epidemic for sure.

Speaker: 16:32

Yeah. So Ellen, you mentioned something in there. Do you see this, you keep saying as, you said as a society a couple of times, from the outside looking at it, as somebody who doesn't know much about this, it seems like this is mostly a Western culture issue. Like, I think if somebody said, Hey, what do you think of this? It seems that there are cultures, and I'm not talking about governmental support, just family systems and structures. There's other cultures around the world that seem to do a better job of providing support for the aging. Is that, Is that correct?

Ellen Patnaude: 17:10

So I've lived abroad in a couple of places, and I would say, I would say this is actually very U. S. specific.

Speaker: 17:18

U. S. specific. Okay.

Ellen Patnaude: 17:20

Yep. I lived in Central America for a period of time, and you would never, ever find, I don't even think, in Nicaragua, where I spent a year. I don't think in the town where I lived, I'm pretty sure there was not even such a facility like an assisted living or a senior living facility. People stay with their families. They just stay with their families and multiple generations live together and it's just part of what you do. You take care of your old just like you take care of your young. It's just what it is. And it's a community aspect. So if you, as the central provider in your family have to go to work, the kids are at school, but mom is having a bad day and you really need to get to work. A neighbor will step in. Your sister will step in some, there is. There is a much more communal approach to how we live life. I would say when I lived in, I spent a semester living in France when I was in college and the host family that I lived with, they had three generations in their house. I know that in Eastern culture and Asian countries in particular, I, but even in, in the Middle Eastern countries throughout Africa, other places around the globe, they do not treat people this way. They keep them with them for sure. So I think it's. Very US specific. It's possibly Canada as well. I know a handful of Canadian people quite well and they, they talk about experiences in similar ways to what we go through here. But yeah, I really think it's, it's more specific to the northern part of this continent than the western part. And just thinking

Speaker: 18:59

out loud, it seems like it's a newer development as well, because everything you just listed, that used to be, I don't think there was such a thing as a nursing home in the turn, you know, 120 years ago, or if there were, it was not many of them. You lived with your parents. I mean, obviously life expectancy has gotten, has gotten longer. So that does, that does have an impact and there are like higher risks of, you know, like higher diseases and things like that too. But I don't. Unless I'm mistaken, I don't think that was a big thing that people used to do, like go live in a, like a VA hospital to live in a nursing home in the early 20th century.

Ellen Patnaude: 19:34

Yeah. No, I think you're totally right. It is a newer development for sure. It's, it's part of how our evolution. So quote unquote, you know, our advancement as some would call it it's the direction that we've moved and

Jason Frazell: 19:48

yeah,

Ellen Patnaude: 19:50

there, yeah, there's probably a million factors that contribute to it, but I just. Experiencing the consequences of it means there just aren't that many resources that are available to support families. And there's a lot of isolation and this whole shame narrative that goes along with, are you even allowed to talk about how much it sucks and how hard it is, that you're struggling, like you're not even supposed to talk about that stuff. Yeah. And that, that also limits our ability to realize that we need more resources because too few people are talking about the deficit in those resources.

Speaker: 20:27

We're going to go now and talk a little bit, a little bit about your experience with this topic prior to going through it. Was it something you were present to? Had you ever done any reading about her? Was it, or was this more something that you go, Oh shit, this is on my doorstep. I better get educated quickly.

Ellen Patnaude: 20:48

Well, my grandmother, my mother's mother had Alzheimer's. And she lived in Arizona. She and my grandfather lived in Arizona through their, from their retirement through passing. And so we would go out and visit often. My mother has a brother, but my mother was, she was the power of attorney. She was the executor. She was the main one. So I would go out there with her probably twice a year, visiting them, helping to take care of things. And we watched my grandmother's decline, which Alzheimer's is like the slow, steady downward.

Jason Frazell: 21:23

Yeah.

Ellen Patnaude: 21:23

Spiral. And once you lose something, you don't like, you don't, you don't usually get it

Jason Frazell: 21:29

back. Right. Right. Yeah.

Ellen Patnaude: 21:31

So I knew, I felt like I was relatively well versed in Alzheimer's and what that looked like. We saw my grandmother, she suffered with it for more than 20 years.

Speaker: 21:40

Wow. That's a long time to live with Alzheimer's.

Ellen Patnaude: 21:43

But it's not uncommon, honestly. She was diagnosed in her early to mid seventies and she passed away at 96. Wow. Wow. Wow. So so her journey was something I was very familiar with from visiting often and helping my mom. And honestly, that is what we all thought was the case. We all thought my mother had Alzheimer's when she first started showing signs of dementia and memory disruption. And what, what a lot of people, a lot of people use those terms synonymously interchangeably dementia and Alzheimer's. So just the quick 10 second overview of it. Dementia is like soup Alzheimer's would be chicken noodle. Then there's Lewy body dementia, which my mother had, which would be like broccoli cheddar, and then there's vascular dementia, and there's frontal frontal temporal lobe dementia. There's all kinds of, there's like something like 60 to 70 types of identified different dementias at this point,

Jason Frazell: 22:39

but

Ellen Patnaude: 22:40

Alzheimer's affects about half the cases of dementia. That's the most common type. Yeah. Lewy body is in second place with somewhere between a quarter and a third of the rest of the cases being affected by Lewy body. And then the other dementias kind of go from there. So we thought my mother had Alzheimer's. Lewy body is a vastly different disease. Road through hell, then all 10

Jason Frazell: 23:06

percent

Ellen Patnaude: 23:06

because Lewy body goes like this. It's like being on

Jason Frazell: 23:09

a road,

Ellen Patnaude: 23:12

there's a lot of lucidity. That's part of it. So Danny and I go to my parents house and we'd have an exchange with my mother and we'd be walking back across the driveway to our house. And Danny would say to me, I swear to God, she's faking it. I swear to God, this is for attention. Because that, because she was completely lucid on some of those days.

Speaker: 23:32

That's hard.

Ellen Patnaude: 23:34

It was, we never knew which version of her we were dealing with.

Jason Frazell: 23:39

Yeah,

Ellen Patnaude: 23:40

and hallucinations are the other main hallmark of Louie body. We had harmless hallucinations like seeing some, you know, animal farm animals. We lived on a hobby farm, so seeing farm animals that weren't really there, things like that. But then she also would hallucinate that my father was a doppelganger of himself and trying to assault her

Jason Frazell: 24:02

or arrest

Ellen Patnaude: 24:03

her. She would these elaborate visions of things that were happening that were not happening. But she became convinced that were happening and it got quite dangerous.

Jason Frazell: 24:13

That is dangerous. Imagine.

Ellen Patnaude: 24:15

Aggression is another lovely feature of of Lewy body. And so for the final six and a half, seven months of her life, unfortunately we had to place her in a facility because my father reached his breaking point and was

Speaker: 24:28

actually considered unsafe potentially. Yeah. Just based on what you're describing?

Ellen Patnaude: 24:32

Yeah, absolutely. So, you know, there's so many, I, I, I did have that exposure and unfortunately in some ways the exposure caused me to overlook some of the other characteristics that she was experiencing. Because I did not know anything about Lewy Body. I, but I, I'm well versed in it now.

Speaker: 24:54

Yes, yes, and now you teach classes on it. I told, see everybody, I told you we'd laugh at some point. We just gotta laugh about it as well. Well, Ellen, I wanna, I wanna make sure that we cover off on Some of the assumptions that, I think, I'm just gonna leave it open. What are some of the assumptions that live inside of this space? And that I'm, I'm throwing everybody who might be inside of that. I think you know what I'm saying. Maybe the people that are age, or we're all aging, but people that need help. The people that are helping and everything and the government, like the states, the cities. What are some of, some of the assumptions that, and maybe like speak from your own experience. You're like, Oh, I assume that. When in reality, and by the way, let's, let's, let's put it out there for the audience. What state are you located in?

Ellen Patnaude: 25:44

I'm in Michigan.

Speaker: 25:45

You're in Michigan. So this does depend state by state too, depending on how the government funds things and such. I am in New York and we had some lovely news about, you know, nursing homes during the pandemic with a former governor, supposedly like all sorts of things different than this, but. Okay. Thank you. We have our own, you know, version of like bad things that happen. I think every state has their own version, but I just want to clarify that it does depend state by state because some states throw a lot of money behind this. I would, and some states do not as much. So this is a state, generally senior care is a state funded thing for the most part is my understanding with some federal dollars, but a lot of it's state funded. So you're in Michigan. So yeah, what are some of the assumptions that you

Ellen Patnaude: 26:29

Well, I mean, I think starting with something we sort of touched on already, we've, we've normalized caregiving for children, but we have not normalized caregiving for older adults. And so there are some, there are some assumptions around like when you're at work and you get a call from the daycare or from the school, there, everybody's immediate expectation is that, well, of course you're going to drop everything and run, it's your kid.

Jason Frazell: 26:57

Right.

Ellen Patnaude: 26:58

The same is not true if you are at work and you get a call that your mother has fallen or that there is an emergency at the facility where she's living or with the caregiver staying with her. There is a little bit less compassion in my experience. For, for needing to drop everything and run in those moments. So

Jason Frazell: 27:20

there's a bit

Ellen Patnaude: 27:20

of a, there's a bit of a contradiction when we say caregiving, there's, it actually applies quite broadly to a number of things, but specifically around aging parents, there seems to be a little bit less compassion. I think one of the assumptions I made was that I would be able to kind of carry on my life as usual, but it wouldn't be that time consuming. I mean, she's an adult for crying out loud, right? Not like I got to change diapers.

Speaker: 27:45

Except you actually

Ellen Patnaude: 27:46

do I mean, let's not to be crass, but here we're No, that's fine.

Jason Frazell: 27:53

That's fine.

Ellen Patnaude: 27:53

I mean, so, but I also just like time consumption wise. Right? I did not understand how many doctor's appointments, how many times we would individually or collectively have to drop everything because my mother had her, her favorite tote bag under her arm and was trucking down the road and nobody had seen her leave and you better drop everything and run because she's going to get in traffic. Right? Right? So just this assumption that we can kind of do this. Like we care, give for children as part of our daily, because, you know, even though kids and all their complications, we know what that's like with adults that are going through something where they're affected by dementia, where there's a memory disorder happening. It's just so completely unpredictable and you don't expect it because we're not conditioned to have that role reversal expectation. Right.

Speaker: 28:51

Yeah. I wanted to, I wanted to ask something here about As a wife and as a mom with children at home, what's the conversation you would suggest people have with carrot? I'm just, I'm, I'm, you know, I'm a parent of two younger children and our parents, neither of our parents do live with us, but I can imagine That it must be strange for the kids as well, because they're used to mom, the parents are here kind of dependable. And you're like, I can't go to that game or I can't help you with homework tonight because I actually have to do that. So how, how did you and your wife address the conversations with the children as you started to go through this?

Ellen Patnaude: 29:35

Yeah, it's a great question. I mean, we, we, we were more concerned about the types of behavior that they were witnessing. And how to help them process and understand that. I, fortunately, I did not have to miss a lot of like school activities. I had a kid in band. And another one, and both of them actually ran track and cross country for a while, but my older one was really active with music. So all the marching band stuff and concerts and things like that. My mother loved participating in those things, loved going to be a spectator at these events. And so she was, I mean, they were able to go with us for a lot of nice things. Yeah. Doctors appointments and things happen during the day. And generally the kids were at school, but what I did have to sit, we did have to sit down and talk with them about where the changes that they could see happening with my mother. And, you know, for example, sitting at the dining room table our dining room overlooked the pastures and our barn out there. And one of the early hallucinations that my mother sat and described was like, Oh, look, the horses have found a new area to explore. And Danny was up from the table and out the door, like a shot to go like, Oh my God, we have to go chase horses. Get the horses.

Jason Frazell: 30:54

Yeah.

Ellen Patnaude: 30:55

Nope. It was a hallucination. She was, she was seeing something that wasn't there. It was disturbing. It was. It was like funny on one side, but on the other side, it was like chills down the spine, unnerving. To hear someone so vividly describe something that simply wasn't there. And be very convinced that we needed to do something about it immediately. So, conversations with the kids were more about What's happening in grandma's brain? How is this disease affecting her? You know, yes, I still get mad at her. Yes, I still yell. No, it's not, doesn't mean nobody's moving away because they'd never had a front row seat to me and my parents living together. So, you know, for what me and my parents was normal kind of interaction, my children and my wife were horrified.

Jason Frazell: 31:48

Yeah.

Ellen Patnaude: 31:48

We sign up for. So it was more of the conversations around navigating those behaviors. And I think that's the part we don't think about. We do think you mentioned of like, Oh, I got to miss the game. We don't think about just helping them wrap their heads around what's happening and why is it happening and what does it mean? And am I going to catch this? Am I going to catch dementia? I remember my youngest child asking me,

Speaker: 32:14

that's heartbreaking.

Ellen Patnaude: 32:15

No, honey, you're not going to catch it, I promise, but it's, yeah, it is heartbreaking. I think those are the things really critical that we have to address with

Speaker: 32:23

our kids. What about the, you mentioned support,

Jason Frazell: 32:30

and

Speaker: 32:30

we've talked a lot about how there isn't enough support. What kind of support did you find for your children? Other than being good parents and being there for them, but what other resources did you find or things that you found helpful?

Ellen Patnaude: 32:46

Yeah, so we we did have both of them talk to a therapist, see a therapist. We also, I mean, for us, for me and my dad and my wife, we participated pretty consistently in an Alzheimer's association run support group for caregivers. And part of that experience was helping caregivers learn coping strategies, helping us talk through just what we were experiencing and scratching our heads about and feeling like we needed help with. And the, you know, the rest of the people that are in that support group are all at different stages of dealing with different forms of dementia. And it's a really incredible community that's formed. You gotta laugh to keep from crying is one of the things we say all the time in our group. Because we would be cracking up over things that in another context would seem really cruel. Yeah,

Speaker: 33:42

absolutely.

Ellen Patnaude: 33:43

But yeah, going to the supports group, going to classes, learning as much as we could. Just trying to see what sort of resources were there in Michigan every year. I'm not sure if it's every county or if it's every region. So some places more rural, there's a few counties that are grouped in together, but they have an area agency on aging and that is a state funded organization that comes out of like community mental health and it's something that's designed to support the aging community, but they're constantly losing resources. Of course.

Jason Frazell: 34:17

Yeah. Yeah.

Ellen Patnaude: 34:17

You know, so, but in some places they have. They at least offer like workshops and classes, things like that. But just kind of piecing it together where we could paying attention, noticing if the kids seem particularly disturbed, making sure they got out of the house, that they. That their lives stayed as normal as possible with sports and music and school and friends and things like that. Yeah, just trying to hang on to our collective sanity along the way.

Speaker: 34:44

Yeah, as best you can, as best you can. So, Ellen, as we start to wrap up wh I want to speak out now to, again, this whole population of folks. We're all aging. Some of us will, some of us will become your, your mom or whatever the million things that you can get. And you know, my, my mom, one of her best friends got Alzheimer's in her fifties. So it's something, you know, not that far away from it, that age. It's rare, I think, but it's, it's, it happens. What are some things that people can do to prepare meaning prepare to age and potentially have this burden go on to their family. And then the other side of that is. For those of us who maybe aren't quite there yet, what can we do to prepare for the time when we will, we will likely need to provide additional support to our parents, like what you did. And for those of us who don't have spouses like Danny, who go, Hey, we should move them in next door. Which by the way, you must have really loved that woman because I would have been like, Oh, hell no.

Jason Frazell: 35:48

Right?

Speaker: 35:48

Yeah. You're like, she's like, are you finally going to admit I'm just right? Just tell me, Ellen, just tell me, honey, I'm right. But you know, on both things, how can we, how can we support those? Who may need to support us someday and the reverse, like, how do we prepare or what can we be doing better? And this, and anything you have, anything the government can do, education or just things we can do ourselves.

Ellen Patnaude: 36:10

Yeah. Well, I mean, as a coach, you're probably familiar with this idea that I, I really am a big fan of. Of encouraging people to focus on controlling what they can control. So, I mean, in terms of what the government's going to do, I feel like that's probably the place we have the least amount of control. Although I did participate in our Alzheimer's association chapter our advocacy day went to our state Capitol. That was some lawmakers to try to get some specific pieces of legislation pushed through to support this work. But I think on a personal level, it's, it's relatively simple stuff. It's not always easy, but it's relatively simple. I think there are a number of things we can do to make sure we're taking care of ourselves as caregivers and taking care of ourselves. Like I'm 51. So I think about, you know, both my mother and my grandmother were diagnosed with some form of dementia in their early to mid seventies. I've got about 20 years to get my shit together, which means I've got 20 years of like the, you know, Mediterranean diet, right? Kind of healthy eating that contributes to health and exercise and good social engagement and problem solving, et cetera. But also, I think that another thing we, we never make time for it because there's too many other urgent fires we're trying to put out. We've got to be sitting with either our spouse, our partner, our kids, our, our attorney, whoever it is, do some estate planning, do some thinking Your assets and what you want for yourself. Is it the most pleasant conversation you'll have on a random Tuesday? No, some of it is extremely emotional and heartbreaking, but if you don't do it, you're putting the burden of doing it on people who are trying to guess what it is that you want. And unfortunately. For as much financial planning as my mother was great about doing for my parents. Thank God

Jason Frazell: 38:13

Yeah,

Ellen Patnaude: 38:14

she refused to accept the diagnosis Through the bitter end to her death and so that put us in a position of having to guess what it was that she would really want for her best self. We just had her combative, terrified self. That was all we had to go on. So plan, do some thinking, talk to the people that you love, talk to an attorney, put something in writing. This is especially true for those of us in the LGBTQ plus community.

Jason Frazell: 38:44

Yeah. Laws

Ellen Patnaude: 38:45

protect us in most places right now, but that is not a guaranteed thing.

Jason Frazell: 38:50

That's right. And so

Ellen Patnaude: 38:51

it's incredibly important for populations that are not protected by law all the time in all places to absolutely put this stuff in writing so that your wishes will be respected regardless of how your family members may feel about your relationship. Yeah.

Speaker: 39:08

So I want to. I want to just quickly go into that again. I live in New York. We have a very, obviously, it's a blue state, very socially friendly. It's a democratic state, very friendly laws towards most of those things. Are there places in the country where Being a member of that community specifically and being married where you see this could be a problem like like you said you and Dan You're married. You're married. You're legally married It's it's legal But there are states where something happens or a parent power of attorney like it's not quite as easy as it would be for a straight For a straight couple is what I'm hearing you say

Ellen Patnaude: 39:44

A thousand percent and it, there are something like, I don't know the exact count as of today, but the statistic is in the ballpark of 500 pieces of legislation around the country that are targeting LGBTQIA plus rights. And a lot of that is aimed at the, at the trans community, but all of us will be affected. And so, I mean, we live in sort of a purple state. Michigan is kind of a purple state. It's blue the last couple of elections, but it does go back and forth. And we did not have the right to get married in Michigan until it became federally legal. So we got married in Iowa. We have a marriage certificate from Iowa from 2011.

Jason Frazell: 40:28

Yeah.

Ellen Patnaude: 40:28

And that will be honored, but what happens to the future generations or to people who are just living in partnership, absolutely you're not protected at all. You are, you are completely subject to what your family. And if you've got a family that runs hot and cold, that changes depending on the day. So put it in writing, get yourself protected.

Speaker: 40:50

I want to wrap here, Ellen. First of all, I want to like, thanks for your vulnerability. Just bringing this out. I would say this is not easy to talk about, but then I'm about to talk about your book. So you did talk about it and a book I'm so I'm curious. Why the book? Why did you want to get this story out into the world?

Ellen Patnaude: 41:08

Yeah, thank you for asking that. There's two reasons. One is I think I mentioned this earlier. When I was going through this, I could not find a story that reflected my experience. And there was this shame narrative that developed for me that I'm not supposed to talk about it. I'm not supposed to feel how I'm feeling. I'm not supposed to feel. furious and upset and depressed and angry at the person I'm caring for. And I'm not supposed to feel this stuff. I'm supposed to be a martyr. And I'm supposed to be filled with endless patience. And that just was such bullshit. And I would not find a story that reflected my experience. So part of my motivation was writing the book I needed to read when I was going through it that just shared the ugly side of what this looks like in all of its complicated nuances. And so a story that would make people like me feel less alone was one big reason. But the other reason honestly was because I had, I, because I had such a complicated relationship with my mother, there is of course a ton of unresolved stuff between us. And she passed away at the end of 2020. And two years later, I found myself grieving so deeply still and feeling like I couldn't resolve things. Had I done my best. You know, just second guessing and that shame narrative was just so strong. And of course now she's been gone for two years. So why can't I just move on? Why have I, you know, I certainly, certainly am not still supposed to be talking about it. So I took myself away for a few days and realized I needed to write the story and I wasn't sure it was ever going But I, I decided I needed to write the story as a way of processing my own grief

Jason Frazell: 42:57

and it

Ellen Patnaude: 42:58

has helped me more than I ever thought it would because at the end of every chapter there's a section I've called looking back now where my present day self has the benefit of time and space and healing to be able to look back and say, Oh, okay, now I really understand why I felt that way, why I did that thing, what, what she must've been thinking or feeling. So it's brought me closure. in a way I didn't necessarily expect. Yeah, that's

Jason Frazell: 43:26

beautiful.

Speaker: 43:27

Well, Ellen, I want to say, and I said this, just like, thank you for putting it out there. It's specifically about your mother and the Lew body dementia, but I would imagine that anybody who has dealt with anything around what you just said, maybe having to move parents closer, becoming a primary caregiver for them, they'll take a lot from that book. I'm going to send a copy to my mom. I'm going to tell you right now. And, and my dad as well for, for my grandmother. So I just want to thank you for writing that and I want to thank you for being on and sharing your story with us. I, I want to have you come back on and we're going to talk more with Ellen. If you're willing to come back on about some of the work now, or maybe we'll just do a two parter here. We're talking in real time about the work you do in the world now with corporations and with folks, you mentioned you're a coach and you speak on a lot of things and how this helps because this gives to me, I'll bet you this gives such a perspective. That you can then bring in to folks that are, I'm just going to say it out loud. You're like, Oh my gosh, I have fires to put out. I run a company. I'm dead. I don't have time for this. You're like, it doesn't matter. Like it does. It does. And it doesn't. So, Ellen, thank you. And thanks, thanks to Dani, I hope she listens to this, for also encouraging that and being the part, it sounds like she's the partner that you needed, which is likely what you saw in her. So, Ellen, thank you so much for being on. Really appreciate it.

Ellen Patnaude: 44:52

Thank you so much for having me. It was delightful. I look forward to part two.

Speaker: 44:56

Thanks, Ellen.