Competing Priorities: Balancing Family, Career and Caregiving

In this episode, Ed DeVaney joins the sisters of "Confessions of a Reluctant Caregiver" to share his deeply personal caregiving experience. Raised in a competitive and close-knit Irish Catholic family in Chicago, Ed describes a childhood filled with familial connections and strong influences from his mother, who not only modeled the values of care and perseverance but also became the central figure in his own journey as a caregiver. When Ed moved to North Carolina for a major career opportunity, it coincided with the onset of his mother's dementia and Alzheimer’s diagnosis—changes that altered the dynamic of his family and thrust him, alongside his two older sisters, into the complexities of caring for an ailing parent.

Ed speaks candidly about the emotional and logistical challenges that came with balancing his professional growth, the demands of an MBA program, and raising his young family while regularly traveling back to Chicago to help care for his mom. He highlights the family tensions, the guilt of missing pivotal moments in his children’s lives, and the difficulties of honoring his mother’s wish never to enter a nursing home—a promise the siblings ultimately struggled with before acknowledging her increasing needs. Looking back, Ed shares honest reflections on vulnerability, the importance of asking for help, and the lessons this experience has taught him as both a leader and a father. Above all, his story underscores the universal challenges faced by caregivers, the enduring bonds of family, and the need for grace—toward others and oneself—throughout the journey.

About Ed:

Ed DeVaney is a Chicago native from a large, close-knit family. Growing up, he was a dedicated athlete, and that competitive spirit continues to drive him today. Ed has been married to his wife, Michelle, for 20 years, and together they have three children: Grace, Chloe, and Ryan. Their family also includes three dogs: Lakota, Lola, and Poncho.

Transcript

Natalie: 0:11

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver. Podcast on the show, you'll hear caregivers confessing the good, the bad and the completely unexpected, you're guaranteed to relate, be inspired, lead with helpful tips and resources, and, of course, laugh. Now let's get to today's confession. Hey Jay,

Unknown: 0:38

good morning. How are you doing? I'm hoping you don't sing.

Natalie: 0:42

I'm thinking about singing, Oh, it's too late already saying,

Unknown: 0:47

I know it's kind of early. So I'm like, please don't sing. No, I

Natalie: 0:50

can sing. It's a beautiful morning. Well, okay, I'm gonna stop because this is not the voice, although we do love voice, I think we've got an amazing guest today, and Jay, we have

Unknown: 1:06

a boy. I know you already do my voice. It's a boy.

Natalie: 1:10

I love when we have men caregivers on, because they're really I think people don't think of males as caregivers. And every time we have a male on, I feel like that's a win for the 40% of male caregivers out, especially just in the US who are providing care. And I think these stories are super important because it's a different perspective. It is different perspective, a different experience. And I'm super excited, and we have a really awesome guest, and tell everybody

JJ: 1:39

about him, okay? And I'm going to keep it short that way. I don't tell the whole story Natalie, because Okay, guys, today, I would like to say that we are absolutely honored to have Ed Devaney with us. He has an immense number of professional accomplishments. I'll say that out especially leading an organization that means so much to these sisters. So it's really no surprise that he also has a caregiving story. His mother was diagnosed and lived with both Alzheimer's and dementia for years, and his father couldn't take care of her in the ways that she really needed, but that put her in the care of Ed and his sisters, he has sisters, oh yeah, no, with a career and a family of his own. Obviously, that just shows that caregiving does not wait. Ed. We are so honored to have you here with us. Thank you so much,

Unknown: 2:30

Natalie and JJ, it's nice to see you. I don't think we've seen each other since New Orleans, correct? That's right.

Natalie: 2:36

I feel like people are like, ooh. And then what happened? We were working hard, so that's true, but I mean, New Orleans was nice, So Ed, we're super happy to have you on the show. And I think where we want to start is, where I always start is we want everyone to know about about you. So we always start off with saying, tell us a little bit about your background. And I love to say, start from the beginning, you were born, and then, you know, tell us about family life and that sort of thing. Walk us up to care.

Unknown: 3:10

I so I appreciate the opportunity to join you and just reflecting back, it's we're all born in Chicago. I am, to your point, is raised with the mother and father, two older sisters, so I'm number three in the birth order, baby. And I would characterize our growing up as everything was about competition. In the family, it was all about competing. It was every night playing different board games, card games. We were all very active in sports and competing. And it was really our mom that pushed us that that route. And, you know, while I actually got relocated, Gosh, 2010 to Charlotte, North Carolina, shortly after that is really where my mom was diagnosed with dementia and Alzheimer's. So it was, I want to be very clear up front, my sisters carried most of this burden. I played a role in it, but they, as the two sisters, they really carried the majority of the daily taxing, I would say it had on our collective lives.

JJ: 4:21

Yeah, I love when I also jump in and say that. I love when siblings, though, are able to give credit to the other, because we're able to do that with Emily a lot of times, families like well, I did this part, and I did this part, but when you're able to say that my sister's carried a big part, you don't know how much that means to the other sisters the other siblings, is to get credit for that. So kudos for that. So I have a question, because

Natalie: 4:43

I'm going to back you up a little bit, because I need to know a little bit more. So you were raised, what's the age difference with you and your siblings?

Unknown: 4:51

So I was born 1975

Natalie: 4:54

oh, clearly the best year ever. Me too. Yeah.

Unknown: 4:57

And Kelly is three. Years older than me, and Mary Kate is four years older than me.

Natalie: 5:03

Okay, so similar to us. We're two. We're all two years apart, so we support that. So you had normal childhood. I love that you were competition, like competitive. I think that's super fun. Close, it sounds like close knit family, and went to college, I'm assuming met wife, because I know you've got you have also two girls and a boy. So tell us a little bit like you got married. Tell us a little bit about the work your way up to it, because you can't leave out the juicy part.

Unknown: 5:31

So I would say I graduated college, moved downtown Chicago, happened to be at a party with some of my friends that I knew in college that was up in Milwaukee, I happened to meet my wife to was dating someone else at that point. I consistently asked her out. She consistently shot me down.

Natalie: 5:53

We like her. We like her already. And

Unknown: 5:57

eventually I wore down for she said yes and gosh in oh five, we finally married. Persistence, I know

Natalie: 6:07

then children come along, because you're working at this time, right? You're you've got your job. You all have life going on now. Are you siblings all in Chicago too? Still, did everybody stay in chicago until you got moved? I know you said you got moved 15 years ago to North Carolina,

Unknown: 6:22

big Irish Catholic family. Everyone still lives in Chicago and still has no idea how I could ever have taken a job outside of not only the city but the state.

Natalie: 6:33

I knew you were Irish Catholic. I just felt it because of Chicago. But you do only have there's only three of you, so I don't want to talk. I don't want to your parents about that, not your traditional I mean, we met up with Tricia last the other day and recorded hers, and she was a good Irish Catholic family, and they were six.

Unknown: 6:50

It's interesting, because if you think of the theme of what you're doing is my mother was a caregiver for her mother. Oh, yeah, ah, her father had issues with alcohol, and he died very young, which then meant her and her siblings all had to go out and get jobs much younger, get their degrees along the way, while working full time so they could pay the mortgage.

JJ: 7:17

We see so many families like that, just depending on backgrounds. And there's a there's just a trend family culture on families that will step in versus families that don't think that's kind of a responsibility. It is a it's a big cultural thing. A lot of times, this is

Unknown: 7:32

100% factual. Every single day when we were little, we saw our family, we saw our grandmas, we saw our aunts, our uncles, or cousins every single day. Oh, I love that was ingrained in us.

Natalie: 7:44

Yeah, well, and I think that speaks a lot. And I think, you know, honestly, and we've talked about this in the past, you know, as our society continues to advance, we at times with technology, we think this is great. I mean, we're talking to you, you're in another city, and JJ is in a different city, and I'm in a different city, and technology has the ability to bring us together, but also has a as has the ability to kind of pull us apart. And I love that you all were the same way as we were growing up. We had 11 cousins every Sunday. We all went to some church. We all went and played, played after. We ate dinner after. On Sunday even tell you it was roast and mashed potatoes. I mean, it was always consistent. There's something to be said for that. And so it sounds like care was modeled for you growing up by not only just your mom and helping to support her parent, but also her siblings. And so everybody just sounds like it was a part of it. It 100%

Unknown: 8:40

was so you

Natalie: 8:42

and your wife, your wife, Michelle. I love already. I love Michelle already because she played hard to get she's like, You're cute.

Unknown: 8:50

It was that competitive thing. I think that is a competitive

Natalie: 8:55

and I've clearly good choice my friend. But then so then you start having kids, and you're advancing in your career and that sort of thing. So I know you've got is grace, the oldest

Unknown: 9:05

she is, the oldest she we just dropped her off at University of Tennessee. Oh, we're all false. Yeah, we're not going to scream and yell. But

Natalie: 9:12

you know, I'm sitting in my head. I'm sorry.

Unknown: 9:16

Rocky Top, okay, I

Natalie: 9:17

know, I know we could sing. Rocky Top. What point does care come in because you've you've got a good job, you're advancing in your career, but at what point does care start coming in in your life? About how old were you? If you don't mind me

Unknown: 9:30

asking, I think it's a great question. Then I think to fully understand at least my story on this, you have to go back just a little bit further. So my wife and I got married in oh five, which is the exact year that I joined. So I joined Caremark, CBS Caremark in August of 2005 okay, my wife and I got married October of oh five. So my wife has been with the CVS Caremark journey the entire way. So. In 2010 I was asked to really take the first big step in my career, which was becoming a director running the East Coast for some employer customers. And that was really a fork in the rope for us. Is to your exactly how you all grew up. We were a tight knit family. No one lived more than, you know, a 10 minute car right right away from each other, and for me to pick up and leave for North Carolina to pursue something professionally was unheard of. You think about growing up in my family, most aren't doing white collar jobs. You know, I thought my professional track growing up was Chicago policeman, a fireman, electrician, carpenter. That was always my path. Yeah. So for me to go outside of the traditional path, and for me to leave Chicago was a big deal. And it's interesting. I only bring it up because I probably would have said no to it if it wasn't for my mom. Wow. And if she it was her that said, No, you have to go chase. That's your job. You have by 2010 we had already had two kids, and her view was, you can't be this to our family. You have to be somewhat different for your family. And this is one of the steps you have to take. Oh,

JJ: 11:17

I love that was your What did your mom do? Was she a stay at home mom? Or what did she do? What kind of drove that competitiveness or that success in her? What did that?

Unknown: 11:26

What was weird? What did she? She was a stay at home mom for our life growing up so we were around her, breakfast, lunch, dinner, every single day, okay, but I think there is, you know, my father graduated from Kellogg, Northwestern, okay. He was extremely smart, yeah, but my mom was the smartest of the two, and she also was the one that had the drive, the push. I would say my dad was a silent role model. My mom was a very vocal and she had very strong opinions. Okay? I like, like our family, I like that Nelly, very, very and you didn't, you know, you didn't cross her.

Natalie: 12:07

Yeah, I get my I get my directness. Honest is what I'll say. I'm just like my mom,

JJ: 12:13

which is good and bad I'm not sure. I don't ask for an honest opinion. I'm like, just like mom. I don't want to, if I don't want to know, don't ask Natalie or my mom that you'll get

Unknown: 12:21

the Natalie to your point. So I went this weekend. I flew into Chicago. I took my son to the cub game, but we spent a lot of time with my sister, my nieces and my sister. The middle child has 100% turned into my mother.

Natalie: 12:36

She's yellow mustard. Man. She's, I mean, the oldest is always great upon the middle was always yellow mustard. You're gonna be like, yeah, Natalie, my sister need to get together. We know we've been slight, and then there. But, I mean, you're the baby. And we always joke with Emily like she was the baby angel. There was, she never did anything wrong. And with you being a boy, I mean, that really ups the a game. I mean, yeah, your dad loved that. Our dad wanted boys, but he couldn't even get boy dogs and so, so, so then you, so you moved to North Carolina, and I think it's important, I'm glad that you you qualified, like the relationship that you had with your mom, between you and your siblings and that, because I think it really does lean into people being like, whoa. I can't believe you did that to help. And so I'm gonna, I'm actually going to take a pause right now, because I feel like it's a natural break, Jay, because I want to go into care. When we come back

Unknown: 13:29

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JJ: 14:05

everybody, we are back with Ed Devaney. We've gotten to this point where he leaves the homeland Chicago and he goes to the south. I'm not sure that's this kind of question. He goes to the south. He goes to the south. He goes to North Carolina. So at what point you're here, you're in the South. You got this fantastic promotion. You're growing in this career. When does care come along? What is this journey that you're on? What are the next steps?

Unknown: 14:31

It coincided with the exact time I entered into pursuing my MBA from Wake Forest. So I was working full time. I had actually accepted a couple promotions along that way. This is now, I believe 2015 Okay, and that's when we got the the feedback that she is. She actually went in for surgery, and when she came out of the surgery, she was never the same. It was. She would forget little things along the way. But when she came out of that surgery, we still don't fully understand why is she one from maybe on a scale of one to 10, having some signs of dementia to being jumping from one to six. And it happened kind of overnight, which was a little bit for our view, very unexpected, and that created mass changes, not only for my parents, my sisters, but for for me as well. Yeah, yeah,

Natalie: 15:30

let's kind of jump into that. What you see something's going on with your mom. Was this like a routine surgery, or was there concern? Because I know at that point, because you're the same age as me, although I'll say you're I'm December 30. So unless you're December 30, I get to make you a teeny bit older, but, but you're, you're, I mean, I'm getting ready to turn 50 this year. So you're 40, if you really think about it, you're 40 years old. You're, ultimately, you're going to be defined, in this case, as a sandwich generation caregiver. Your sisters may fall in the same kind of field where you're got children, and exactly start looking at what your parents look at and and what's going on with them. Your mom goes into surgery and comes out, and things feel different. What is the conversation between you and the siblings and then you and the entire family unit? Because this is what a lot of times does not happen, is the conversations

Unknown: 16:21

we had a lot of conversation. I would say there was a lot of friction in the conversation, because we all had independent thoughts of what was best for our mom. So we proceeded with all, right, let's see if Dad can do this. Okay? And we would give dad, you know, my father, a list of things he would have to do. And then we would show up. And you know, every day my sisters would be there, every weekend, or every other weekend I would be there, and you'd ask, Hey, did mom eat breakfast today? I don't know. Well, heck, dad, like, you need to do this stuff, and we chase that down. And there was a lot of frustration. I would say, over the years, especially my oldest sister with my father, she had a lot of frustration. She's She's the type A out of the entire family, I don't know. JJ, if that resonates or not,

Natalie: 17:14

yeah, oh, she's always in charge. I don't know if you might have said, even though I'm in the loudest, she's always and so I don't know if your sister's always in charge. If you're just like because we fall it's funny how sibling dynamics are. And if you want to hit on that for a sec too, because Emily and I, our parents were younger when they married and they had us. Mom was 1921, 23 but wow. And so they were our mom's only 71 for example, she just turned 71 But JJ was always in charge of us, because my parents both worked. We were definitely a blue collar family. My mom worked for the government. Our dad worked for the government, but Jay, we just naturally fall on that. And we fell into those same kind of structure, into into adults, because JJ is the primary preferred of our mom as a caregiver. Is your oldest sister the primary between the three of you, because there's definitely differences between primaries versus who's really taken the lead.

Unknown: 18:16

So she's gonna kill me for saying this, but she always wanted to be the lead, and she would make herself be the lead, okay? And Kelly and I the the middle, and me would be like, All right, here just, just let her go, and we'll fill in the holes. Okay, when I get stressed out, I'm griping about being the lead, Natalie and Emily are undermining like they're at dinner. They're doing their thing. They're like, let her go. She's got the guilt martyr type cape on. That's

Natalie: 18:46

true. It is true, and she won't let anybody help at times. And I will say this. So do you all have side text groups where you and Kelly will have a conversation about your older sister, and then you and your older sister? Because we totally do that.

Unknown: 19:00

It's not a family unless you do it. That's exactly right. Thank you.

Natalie: 19:03

Thank you for that. I appreciate. There's nothing better than than strict. It's almost like a game of survivor in making decision making. Like, Hey, did you know that JJ wants to do this? Emily? And Emily's like, Well, I think about this. I'm like, Ooh, let's, let's do and then JJ and I'll be like, Oh, Jay, what do you think about this?

Unknown: 19:21

Look at that, Jay, they're making it your idea. Oh,

JJ: 19:23

totally, yeah, I know they're playing me. I know they're playing me, but it's also the same with our mom. I'll throw that out. There she is. She plays all of us. Ed, she will message me and say something then she'll message Natalie and say something different. And I'm like, Did mom message you this? She was like, she's playing you. JJ, you're in one you're being Kristen. So

Unknown: 19:42

our mom did the exact same thing. Oh,

Natalie: 19:45

nice. That is fantastic. Yeah, I like that. So she knew who to call when she needed something. Yes, yeah. So how old are

JJ: 19:53

your parents? I'm just curious, because you said your dad is there are some roles that he's kind of like. I don't know if she ate breakfast or not. How old are you. Parents at that

Unknown: 20:01

time. So my mom was born. I headed up on the screen ahead of me. She was born in 1938 Okay, all right, March, 25 of ninth or 1938 March, 25 That's why her name is Mary. Nine months before Jesus was like,

Natalie: 20:15

Oh, wow. I love that. I love that. Yeah, so Dad's not able to keep up as much conversations that are going on. So what are, what are interventions at that point? Are you guys thinking that you're going to have to do if you think, Hey, I'm not sure that this is his strength area, and I can imagine that being hard because he's the head of the household. I mean, yeah, he's traditional, like I'm so you all are traditional. We were traditional,

Unknown: 20:38

very traditional. So I would say that's for friction. Hit, yeah. And it was, I guess I didn't realize that during the time, but there was a lot of friction. So look, we grew up with a mom that always said, I never want to be in a home. Oh, yeah. And I can't tell you how many times as a kid I committed to that. I know, and you know, so we did, I would state in my sisters the same way they committed to it. And now all of a sudden, we're in the situation of saying, oh my god, like, how do we break the promise we gave to her? Yeah, so we did everything possible, right? So we got a live in nanny. And, you know, my mom could be abrasive, so we went through a churn of caregivers that lived in the house. And all along this way was we wanted our father to play that nurturing role, yeah, but the reality was, I knew it early. He just didn't have it. Yeah, that's not who he was. So just give you background to him, because I feel like I'm selling him short. Yeah, he grew up. His parents were immigrants from Ireland. He grew up with nothing. They they worked, you know, blue collar jobs. And when he was young, they would give him a quarter and say, Hey, go ride the Chicago bus line all day. Like he just didn't grow up with that nurturing side. And I knew he didn't have it. And we were kind of at this point where I think me and my middle sister going to make connecting the dots here. We would text each other and be like, Dad just doesn't have this. This is an uphill battle. We're going to lose it. I would say my oldest sister kept fighting it and saying, you need to do this. You need to do that. And she, for lack of better word, she was a bulldog on it. And you know, that led to tension with her and my father, and we went through this process. Eventually, my father died prior to my mother, and at that point, my mom's dimension Alzheimer's was bad. Like give you perspective, she had no idea who I was. She had no idea who my kids were. You know, me being out of town only there one or two days a week. She would remember stories about a baseball game I played in when I was eight years old, but she couldn't remember a conversation I had with her three minutes prior to that. So we created it. Created a dynamic of we had to bite the bullet, we had to do what we promised we would never do. And, gosh, this is almost like a psychiatry session. I never thought about it, but it was honestly reflecting back. It was probably one of the hardest

Natalie: 23:25

things I ever did. We would, we would agree with you, our mom was the first in our family, either side, to ever go into a skilled nursing and the feelings that come along with that, there's guilt. JJ is in charge of carrying all the guilt. Oh yeah, she carries that for everybody. But there's guilt, because it's, it does, and it doesn't make Kristen any less. And so you mentioned I'd see my mom once or twice, you know, once or twice, two days a week. But you're seeing her, not virtually. You're, you're going back and forth. So how did you and your siblings say we're going to support dad? And this is what the schedule is going to be like. Oldest sister takes takes these tasks. Middle sister does this. I do this piece like, how did you all navigate that out? And what did that look like? Because you flew back and forth. That's what caught me. About your attention. You were going back and forth. Was it every week to

Unknown: 24:17

almost every week I would fly into Chicago? The good thing is, in my job, I travel extensively, so I had racked up airline points where I could do it. So yeah, I mean, I think the way we set it up was Mary, Kate and Kelly. They would own the week and I would own the weekends. Now the detriment was, at this point, 2015 I had an eight year old daughter. I had a six year old daughter, and I had a son that was just born. So you talked about the burden, I think I'm sorry someone is calling me on a cell phone. Is the burden I this put on my wife and my family was a really big deal, and I know. My sisters feel the exact same way. They miss boarding events. They missed activities at school. The normal stuff your parents do when you step into a caregiver role that is a priority, and that then results in you missing a lot of things that I kind of look back on it. I don't regret it, but I am sad I miss a lot of things.

Natalie: 25:21

Yeah, well, and I think your position, in itself required you to travel a lot, so there's always the normal guilt that comes with that. I mean, I've traveled a lot with positions I've been in where I travel out of state as well, and but I didn't have children, and so it's one thing. I think it's one thing to miss your spouse and what that that impact of that travel and care has on that relationship, but it's also another the impact that has on your children as well. What conversation did you and your wife have about this? Does she get at some point like, buddy, it's tired over here. I was tired. I would love to see you on the weekend, because, I mean, you're saying every weekend

Unknown: 25:57

my classes at Wake Forest were Mondays and Wednesday nights. There you go. JJ, that's your call out for Winston Salem,

JJ: 26:04

that's right, yeah, but that executive MBA program, I totally understand so that I got that that's a commitment in itself.

Unknown: 26:11

So So I would fly out almost every Monday night after I'd fly back into Charlotte. I wouldn't even see my family. I would go to class on Wednesday, I'd fly back out. I'd get home on Friday and I would have one night with my wife, one night with my kids, and then Saturday morning, first thing, I would fly out to be there for the weekend. And, you know, fly back Sunday night, have dinner with the family, and then it was a rinse and repeat the exact same thing, week in and week

JJ: 26:41

out. How are you physically, because this, for me, just listening to you, is I'm

Natalie: 26:47

exhausting, like, I'm exhausted for you right now.

JJ: 26:50

What? Because I'm wondering, first of all, is work like, Oh, you've shared this, and everybody's like, okay, Ed, you can back off a little bit. You know, we know that you're having a hard time. First of all, you know, take a break and but how are you taking care of yourself?

Unknown: 27:03

Well, I'll answer the outlook at this way. I never told anyone I was really doing this stuff, so anyone I worked with had no idea. My friends had no idea. But it was also the time I actually, in my life, started getting very healthy. Okay? It that was the point in time. It was after I finished my MBA that I said, I don't want to wake up at 5am but I'm going to go to the gym every day at 5am and to this day now, I'm not six days a week like I was initially, but I'm still four or five, and that is just something that, if you look at, I look at how my parents retired, what should have been their best years, and them physically not taking care of themselves. They are what I don't want to be, yeah. And that is the drive I have every single day when I wake up.

JJ: 27:51

You think that gave you a little bit of control too? That was one thing you could control. I can go to the gym.

Unknown: 27:56

I never thought of it that way, but you're probably right.

JJ: 27:59

I can control my food. That is, you know, a couple different things, yeah,

Natalie: 28:03

especially in a time that feels it I'm gonna tell you. I mean, in a times that feels so chaotic. When Jason and I were in New York for his treatments, there were things that I had to do that was like, I can do this thing. I can control this. Because there's these times when you have no control. And I can imagine going and seeing the toll that it takes on you emotionally to visit your mom for those two days her not to really recognize you and and how to navigate through that, and then all the other things, navigating the relationships with your sisters. And how do we do this? And what's this? You know, I will say that when we had to finally make the decision and have that conversation with mom about going into skilled nursing, it was, it was, we agree, it's the hardest decision you ever have to make, because that's not what you do. That's not what everybody wants you to do. But

Unknown: 28:54

how did you guys make that decision? I'm curious, because we fought my sisters and I fought about this, did you guys fight? Or was it a logical conversation?

JJ: 29:04

It was, and you mentioned it, and I actually, every time I tear up, we're like Kleenex. You can sponsor us. I tear up when we talk about it still, and it's been years Ed because we promised we would never do it. And for me, I feel like we I failed my dad, because it was my responsibility to take care of her. We went in, Emily was taking care of her. 24/7, basically, we had tried that for seven months, and we realized that we could not take care of the needs that she had, and

Natalie: 29:31

there just wasn't enough people. There wasn't enough people human capital to be able to do it, and the system had worked against us.

JJ: 29:39

And yeah, she needed more care, and we were failing her, and we had to have that discussion with her, but it's still today. She always asked me when I talked to her, Do you think maybe I could go out and live in assisted living, or I could come out again and we can't care for and so and every day, it's still hard, and it is. We finally though we have a sister to make me cry. I'm sorry. Sorry, we have a system where, although we may disagree about something, when a decision is made, we go along. We make the decision and we follow through with it. We can't

Natalie: 30:12

argue about it. The skilled nursing wasn't actually the argument. It was. Our mom had been in assisted living, and she'd had three failed placements because they felt like they couldn't meet her needs, otherwise known, as she had showed her rear. And so she was also a touch difficult I get it honest, Emily wanted Emily quit her job, moved from Indiana and moved back home to care for our mom, and so we pulled her back out. And that's and the reason we did that, though, is, and then again, this is why we have such a great relationship with you guys is because mom was able to get a duopa pump and but it was only able to be given to her if she was in the home or in a skilled nursing so she couldn't have this magic pump in assisted living, by regulation, but in an stupid regulation, because I'm like anybody could admit, can clean out the flush out the device. But Emily quit her job, which is not uncommon for caregivers, and moved in with our mom, but then we didn't have the support. I'm the one who fought against it and said, this is a bad idea. Turn Around, Don't Drown. But ultimately, JJ and Emily ganged up against me, and they said, This is what we think we want to do, and you have to, you have to let Emily try. And the answer was, okay, and there is no, I told you so, because there is no win like you don't want them to fail. Being right means that somebody is, I know it fails. So when you guys, who was the one who was felt like the holdout. And the question would have been, for me, would have been, are you moving mom in with you? We had

Unknown: 31:47

these conversations. I would say we did everything possible to avoid breaking the promise that we all made to her, yeah, and this is young, like we were like, she would tell me, Eddie, six years old, something ever happens to me, I'm not going like promise me, because she had seen it with some of her aunts and uncles. So we we thought about it. I mean, I had, my wife is fantastic, right? It's the fact that she let me do this. She even allowed me to even offer us an option for her to come live with us. Wow, but that didn't work out. It's big family Chicago. She's not leaving Chicago. That's off the table. You're coming to us. Yeah, you guys probably understand how that dynamic works out as well. So we did. I would say we exhausted every option, living with my sisters, living in none of it. We knew none of it would work, and we probably should have made that decision six to nine months earlier. But really the impetus was we grew up in a split level, 1100 square foot home is we were worried she would fall and break her hip. Oh, yeah. And in my head, as soon as you know you're pushing close to 80 and you break your hip, that's not a good spot to be, that's right. So that was, that was when we collectively said, we have to do it.

Natalie: 33:16

So I we're over our time of our break. Because I'm like, This is what happens. I'm like, oh, so we're going to take a break, Jay, and we're going to come

Unknown: 33:23

right back. Care forward is a technology platform that connects volunteers with seniors, the disabled and those with chronic or complex health conditions, offering support like transportation, home visits and more details online@careforward.io

JJ: 33:38

All right, everybody. We are back here with Ed Devaney, and we've gotten into some tough topics, and one of them, of course, is making that decision to put that loved one in a skilled nursing facility. And you guys all know that's a tough topic for me, Ed, from there, what? What happens? I know that your mom is in really advanced Alzheimer's and dementia. Where does life go? From there? What? What ultimately occurs, she

Unknown: 34:03

my sisters visited her still every day. At that point, I probably wasn't flying in every weekend. It was probably every other weekend, and I would make a point to go see her and look you're you're having conversations with someone who has no idea who you are, which made it makes it hard, but there was glimmers of she would say things, and I would sit there and I would just laugh. I'm like, that's who she is.

Natalie: 34:27

Yeah, you still see parts of her. Did you you mentioned? And I think this is, let's, let's get into some I don't think it's a male stereotype, but I think it happens more with males than females, because we're awfully chatty. You mentioned that you didn't really tell your friends about this. You didn't talk to your friends. I mean, I know you talked to your wife. I know your kids saw you. You know, saw this going on. But this feels very close, you know what? I mean, like, very kept tight, close to you. Because this is, in the end, it's very it's always personal and there. And for me, I didn't even talk. People about Jason having cancer, except for a small select group of people considering what I do from a business development standpoint, like 100 of my closest friends. But I mean, it was not put out there for the world to see, because it made me feel very vulnerable. It made me feel like open up for scrutiny of, Am I making the right decisions with him, that sort of thing. Who did you talk to at this point? Did you talk to your friends about it? Did you talk more at work about it? Because you've been going through this for a while now,

Unknown: 35:27

I didn't talk to anyone that look, the way we were raised was you put one foot in front on the other, and you go and no matter what. So I it was funny. In advance of this, I actually pulled up the eulogy I wrote for my mom's funeral. And I think a lot of the way I behaved, and I didn't really recognize it until I reflected back on the eulogy. It was all about quit your boo hooing. I'll give you, I'll give you a story. My sophomore year of high school, one of my good friends committed suicide. I kid you not, 24 hours later, my mom is in my ear saying, Look, life is for the living. You have to move on. Like that was the way she instilled and it was, quit your boo hooing. Life is here, whether you are prepared for it or not, and you need to go the more you think about this stuff, the more you absorb it, the worse off you're going to be. So just go now. I don't think the way I handled it was right. Yeah, I probably should have talked to it, talk to people. My wife was really the only one I ever had a conversation with, and if people in work would ask me, I would do my damnedest to make that a very short conversation and move on to something else.

Natalie: 36:49

You know, I think that's important. I think because I mean my experience, especially as an executive. I mean I was, had just been named CEO of a behavioral health company. Jason was diagnosed at February 14, and actually March the fourth. It was confirmed on Valentine's Day. Oh yeah, nothing says Happy Valentine's Day. Like, hey, we think, Oh, wow, you don't forget, by the way. And then I was named CEO on April 1, which seemed appropriate as well, because that's April Fool's Day. And I thought I could do it all. I mean, if I'm really honest about I thought I'd do it all, and I my backgrounds. People were like, Oh, your background is so cool. And I'm like, yeah, it's real. It's the background of that's the Kristen building right behind me. And because I'm on the 15th floor, and Jason's getting an infusion, and so, wow, think about those kinds of things. And so my question to you is, how to and I'm going to tell you, I quit my job six months after we got back. I was different, really? Yes, I did, like most people would be like, I can't believe you quit your job. You've worked to this pinnacle. You wanted to be CEO. I planned on being the I planned on retiring from intercept, and I was so different. And so for me, it changed the complete trajectory of my life. But I also tried to take my lived experience and apply that into the workplace. Because I knew my privilege. I knew not many people moved to New York City and live in Midtown, so you can get treatment at the number one place in the in the world, basically, which is Memorial Sloan Kettering for head and neck, sure. I just met with them, yeah, and I'm going to tell you, they are amazing, but there is something. But I knew that I had to do something different for my employees. And I had an owner, respectfully to him, who just we weren't aligned any longer, and my experience, I felt like I needed to take that experience and do something with it. You know, Jay, I know that we'll be like, Oh my gosh, our time is almost up, which clearly means it's time,

Unknown: 38:49

because I have all these questions,

Natalie: 38:55

two sisters, and you're like, oh God,

Unknown: 38:59

so I'm gonna show my weight for us.

JJ: 39:02

Thank you. Thank you. Thank you. So I have actually two questions, I'll try to be good, and they are good. They're not bad. Have you had a discussion with your own children? Have you placed any type of obligations on them? Or what are your thoughts about yours and your wife's life as you get older,

Unknown: 39:22

it's interesting the conversations I'm having with my daughters now, so just going back is I just dropped her off two weeks ago at Knoxville, yeah, and the conversations I'm having with her are really almost apologetic that look, I know I miss a lot of your life. And that's work. That's, you know, what I had to do for my family back in Chicago. And my goal in life is to be really active when you have kids. I want to be front and center. I don't care what it takes. I'm going to be there. Whether I'm going to you, you're coming to me and. And my wife and I are already talking about, what's next in our life? Do we keep this house? Do we buy a farm and have ATVs and horses to get our grandkids to come in

Natalie: 40:09

down there? We're your honorary sisters. You have no clue. We're like, oh, we just showed up. Why are the sisters here, Michelle,

Unknown: 40:16

but you know, I'm 50 my wife is she turns 52 on Friday, and you know, these are the conversations we're starting to have. So I guess to sum up, JJ is, I feel a little guilt in the family, but you know, how can I make up for that? This past weekend, I took my son to Chicago. I do a daddy daughter weekends with my individual, you know, with grace and Chloe. So I'm trying to find, well, I don't have all the time in the world. I'm trying to find meaningful time, yeah, purposeful one on one

JJ: 40:48

time, expectations that they will do the same. Though. Have you ever had the discussion to say to them, I never want to go into a home? Or is that something they know I

Unknown: 40:57

was trying to I was trying to duck that question. Come on. I didn't realize that if you don't want to answer, that's okay. No, I'll answer it. I have not, yeah, something, nobody had that conversation. I understand, and I think it's because of the guilt that I still carry. Yeah, I

Natalie: 41:19

know, you know, I think, Ed, there's so many people who don't want to have the conversation for many reasons, many reasons. And you know, JJ and I were just her, I was, we were just talking about it the other day. Here's a spoiler alert. JJ and Dexter don't have everything set up the way they need it to, because Dexter's not ready to talk about

Unknown: 41:39

it, and he's 65 he doesn't want to plan for me is

Natalie: 41:43

decrepit but, but it's fine with Kristen and but he

JJ: 41:47

doesn't want to talk about the final wheels estates or anything.

Natalie: 41:50

We're talking about any of it. And so whereas Jason and I'm like, I hit it head on. I'm like, because we don't have kids, and I'm like, That's right, you've got to, we got to find other people's kids to help us. Because, I mean, I've got to be a good aunt. I mean, I'm trying to woo my other nieces and my honorary God children. But I think that's those are important things to have those discussions sooner than later, because I'm going to tell you when you get cancer at 55 you don't expect it scary. It is scary, and I think that's why it's so we preach it over and over again to everybody, but just understand it's hard. It's not just easy. You just go and do it, because these are hard conversations because of our past experiences.

Unknown: 42:32

My wife and I, to your guys, point we just started having these conversations. My view on life has always been, earn, save and invest. And now you hit a different point with kids growing up. And we're we have new life insurance, setting up new wills. We're in that process right now. And I don't know what your perspective it takes a lot of time to get that done. Yes, it does.

JJ: 42:58

It takes a lot of mental energy too. You're kind of like, I'm really thinking about this. Like, I'm thinking about ultimately my death, and nobody wants to talk about it. Yeah, yeah.

Natalie: 43:08

I mean, that's right about death here people like, ultimately, you're having to look forward, in the sense of looking forward, like, and we don't know No day is guaranteed, but we don't. We talk about never aging, but, and that's why we're talking about, let's age. Well, age well, looks like being there were three things. We were at a conference last week, Ed and I think you'll you guys align with this 100% we know the importance of how the impact of isolation and how that impacts your overall health and wellness. We also food and working out food and fitness, and the fact, when you said, I'm not going to not be healthy, because they talk about your chronological age, most people are living to be in the US. Men, I believe, are 70, and they're 7074, I believe, is what it was. And women live to be 80, and give or take, and but their health age is about stops at about 65 and that just when they start feeling more aches and pains. Because I'm telling you right now, friend, I am feeling some aches and pains, but I'll start at 40. It's weird.

JJ: 44:14

Okay, I have one more and I know so I know we've like tight on time. We've spent a lot of time with it. We love him, but I have. I had one more question, but I probably forgot it. Natalie, well, that's this, was it this? Was it my it's my whole menopause brain. You don't need to know that, Ed, but anyway, so here it is. You mentioned something earlier, and I want people to know about this. You said that sometimes you you felt like you didn't do a great job. And there's so many of our listeners that say I'm not doing a great job. I could have done better. Will you just tell me a little bit about that? The part being, what would you say to somebody out there today that says I'm not doing a good job?

Unknown: 44:51

I throughout the entire process, I thought I failed. I thought I failed my mother. I thought I failed my father. I thought it was failed. Only my sisters, and it was constant. No matter what I did in my head, it was never enough, and I would stay reflecting on that. I wish I would have pulled up and asked for help, and it's interesting how I lead now that is so I probably didn't answer your question, right, Natalie, earlier, but that's probably the biggest lesson I had from that, and it plays out every day in work. I asked for help all the time. I asked for help from my wife. I asked for help from my kids, my sisters. I asked for help with all my co workers that hey, I'm trying to achieve a, b and c. I'm stuck on this. You know, how would you think about it? It? I probably wouldn't have been open. I wouldn't have been as vulnerable without going through that experience and JJ and Natalie. I don't know what you guys think, but every day I was in that I felt like I was failing. Even on my mom's the day she died, I felt I felt like I was failing. I

Natalie: 46:09

feel you, I can tell you, every day it felt like I didn't do something well enough. And here's the thing, I never saw, the things I did well. I just saw the things like I didn't cook this meal, although everybody who knows me knows I don't cook, and so trust me, my husband's a great cook. You are welcome to come up to Virginia. Everybody's welcome to come to Virginia. It's for lovers. But I always I focused on the wrong things, and I really you have to find those moments where there's glimmers where exactly when you said you'd laugh with your mom. That touched my heart in the moments that you said you sat by her bedside, and she'd say something, there's my mom. Yeah, there was a moment for me that I was like Jason and I were just like everybody else, sitting on the on the on the river. We were looking at the river at Roosevelt Island, and I felt like normal. I felt like

Unknown: 47:01

it is what I felt, because I know you guys are much more educated on this than I am. Is that common? Oh yeah,

JJ: 47:09

every day, every day, and the days I get calls from my mom, it was last night even, I'll tell you that. Yet everybody knows that saliva is really excessive right now. It's overwhelming. And so she calls and she wants me to fix it, and I can't fix it, and I've called and, you know, talk to the doctor, but you take that with you, you know, you go to sleep at night, and I've failed that. Why can't I get that fixed? I've is there another piece of, another component? You know, I'll share this with you. There's a fantastic new medicine out for that, even as that's a step up from the duopo pump, well, now I'm trying to call the insurance companies, you know, because it's not approved, they haven't approved it yet. It hasn't passed. And you're like, I have to work harder. I have to work harder. I'm failing at this. Why can't I figure it out? But every I think everybody does. We hear that from so many people, because I think it ultimately you want to heal that person. I think ultimately, that's where your heart is. And if you can't heal them, then you've failed, and I think that's a big part of it, but I will say to you, because I know what you have done. If you were to just look at one person, that you changed, you changed us that day, that you helped me. And I don't want to get all teary, Monica knows. You know your whole staff does, but you changed our lives with helping my mom and your mom. You You did something amazingly, right? So you did at home with you?

Unknown: 48:32

Yeah, you're you did. We appreciate the opportunity. Thank you. You did that. You did though,

Natalie: 48:37

but you did. You did well with your mom, yeah, no matter for you and your siblings, no matter all the things that may have not gone the way that you had hoped it for these siblings are here to say you did a great job. Did a great job.

Unknown: 48:49

Yeah, great job.

Natalie: 48:50

So I'm gonna, I'm gonna do the last question. Oh yeah, it's a fun one. It's totally fine, because you can tell I always talk the most. Oh yeah, my question is always fun. And I had other questions, but I don't care, because this is my favorite question. Anna was mindful of our time, yes, so I'll always end the show with tell me what your favorite guilty pleasure is. What is the one thing that you do just for you that brings you joy and makes you smile? What's the thing that you enjoy doing just for you?

Unknown: 49:16

Um, that's a great question, and I probably have multiple guilty pleasures, but I love hamburgers. Oh, who's where, so this weekend, so I actually, you watch the, gosh, I can't Dave Portnoy, he does like the pizza tracker. I'm not a big pizza person, yeah, but I monitor, like the best hamburgers. So I'll send you guys a picture. We went to AU Chevelle this weekend. They open up at 10am I got first in line at 902. To be first in and I love a good hamburger. If you ever go to Chicago, West Loop, au cheval, it is amazing. Oh. So that's my guilty pleasure. I've eaten every every night I've had fish instead of a hamburger. Okay, that was the day.

Natalie: 50:08

I love a good hamburger, but you're gonna end it there. Guys, much Ed, thank you so much. You're so wonderful. You are officially our brother. We don't even have brothers, but you are officially, officially one sisters. You have no free will. Sorry, sorry and so but thank you for being with us. We appreciate you more than you know, Jay, do you want to take us now?

JJ: 50:28

Absolutely, guys, until we confess again, we will see you next time. Bye, bye.

Natalie: 50:37

Well, friends, that's a wrap on this week's confession again. Thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find the video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry. All the details are included in the show notes below. We'll see you next Tuesday when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I, at Confessions of a reluctant caregiver, have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted and no part can be reproduced without the expressed written consent of the sisterhood of care LLC, thank you for listening to The Confessions of a reluctant caregiver podcast.