October 28, 2025 • 52 mins
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.
Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Natalie (00:11):
Hey guys, it's your favorite sisters with the
Confessions of a reluctantcaregiver. Podcast on the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected,you're guaranteed to relate, be
inspired, lead with helpful tipsand resources, and, of course,
laugh. Now let's get to today'sconfession. Hey Jay,
Unknown (00:38):
good morning. How are you doing? I'm hoping you don't
sing.
Natalie (00:42):
I'm thinking about singing, Oh, it's too late
already saying,
Unknown (00:47):
I know it's kind of early. So I'm like, please don't
sing. No, I
Natalie (00:50):
can sing. It's a beautiful morning. Well, okay,
I'm gonna stop because this isnot the voice, although we do
love voice, I think we've got anamazing guest today, and Jay, we
have
Unknown (01:06):
a boy. I know you already do my voice. It's a boy.
Natalie (01:10):
I love when we have men caregivers on, because they're
really I think people don'tthink of males as caregivers.
And every time we have a maleon, 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 thinkthese stories are super
important because it's adifferent perspective. It is
(01:31):
different perspective, adifferent experience. And I'm
super excited, and we have areally awesome guest, and tell
everybody
JJ (01:39):
about him, okay? And I'm going to keep it short that way.
I don't tell the whole storyNatalie, because Okay, guys,
today, I would like to say thatwe are absolutely honored to
have Ed Devaney with us. He hasan immense number of
professional accomplishments.
I'll say that out especiallyleading an organization that
means so much to these sisters.
(02:00):
So it's really no surprise thathe also has a caregiving story.
His mother was diagnosed andlived with both Alzheimer's and
dementia for years, and hisfather couldn't take care of her
in the ways that she reallyneeded, but that put her in the
care of Ed and his sisters, hehas sisters, oh yeah, no, with a
career and a family of his own.
Obviously, that just shows thatcaregiving does not wait. Ed. We
(02:22):
are so honored to have you herewith us. Thank you so much,
Unknown (02:30):
Natalie and JJ, it's nice to see you. I don't think
we've seen each other since NewOrleans, correct? That's right.
Natalie (02:36):
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'resuper happy to have you on the
show. And I think where we wantto start is, where I always
start is we want everyone toknow about about you. So we
(02:58):
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 upto care.
Unknown (03:10):
I so I appreciate the opportunity to join you and just
reflecting back, it's we're allborn in Chicago. I am, to your
point, is raised with the motherand father, two older sisters,
so I'm number three in the birthorder, baby.
And I would characterize ourgrowing up as everything was
(03:34):
about competition. In thefamily, it was all about
competing. It was every nightplaying different board games,
card games. We were all veryactive in sports and competing.
And it was really our mom thatpushed us that that route. And,
you know, while I actually gotrelocated, Gosh, 2010 to
(03:55):
Charlotte, North Carolina,shortly after that is really
where my mom was diagnosed withdementia and Alzheimer's. So it
was, I want to be very clear upfront, my sisters carried most
of this burden. I played a rolein it, but they, as the two
sisters, they really carried themajority of the daily taxing, I
(04:17):
would say it had on ourcollective lives.
JJ (04:21):
Yeah, I love when I also jump in and say that. I love
when siblings, though, are ableto give credit to the other,
because we're able to do thatwith Emily a lot of times,
families like well, I did thispart, and I did this part, but
when you're able to say that mysister's carried a big part, you
don't know how much that meansto the other sisters the other
siblings, is to get credit forthat. So kudos for that. So I
(04:42):
have a question, because
Natalie (04:43):
I'm going to back you up a little bit, because I need
to know a little bit more. Soyou were raised, what's the age
difference with you and yoursiblings?
Unknown (04:51):
So I was born 1975
Natalie (04:54):
oh, clearly the best year ever. Me too. Yeah.
Unknown (04:57):
And Kelly is three.
Years older than me, and MaryKate is four years older than
me.
Natalie (05:03):
Okay, so similar to us.
We're two. We're all two yearsapart, so we support that. So
you had normal childhood. I lovethat you were competition, like
competitive. I think that'ssuper fun. Close, it sounds like
close knit family, and went tocollege, I'm assuming met wife,
because I know you've got youhave also two girls and a boy.
So tell us a little bit like yougot married. Tell us a little
(05:25):
bit about the work your way upto it, because you can't leave
out the juicy part.
Unknown (05:31):
So I would say I graduated college, moved
downtown Chicago, happened to beat a party with some of my
friends that I knew in collegethat was up in Milwaukee, I
happened to meet my wife to wasdating someone else at that
point. I consistently asked herout. She consistently shot me
(05:52):
down.
Natalie (05:53):
We like her. We like her already. And
Unknown (05:57):
eventually I wore down for she said yes and gosh in oh
five, we finally married.
Persistence, I know
Natalie (06:07):
then children come along, because you're working at
this time, right? You're you'vegot your job. You all have life
going on now. Are you siblingsall in Chicago too? Still, did
everybody stay in chicago untilyou got moved? I know you said
you got moved 15 years ago toNorth Carolina,
Unknown (06:22):
big Irish Catholic family. Everyone still lives in
Chicago and still has no ideahow I could ever have taken a
job outside of not only the citybut the state.
Natalie (06:33):
I knew you were Irish Catholic. I just felt it because
of Chicago. But you do only havethere's only three of you, so I
don't want to talk. I don't wantto your parents about that, not
your traditional I mean, we metup with Tricia last the other
day and recorded hers, and shewas a good Irish Catholic
family, and they were six.
Unknown (06:50):
It's interesting, because if you think of the
theme of what you're doing is mymother was a caregiver for her
mother. Oh, yeah, ah, her fatherhad issues with alcohol, and he
died very young, which thenmeant her and her siblings all
had to go out and get jobs muchyounger, get their degrees along
(07:12):
the way, while working full timeso they could pay the mortgage.
JJ (07:17):
We see so many families like that, just depending on
backgrounds. And there's athere's just a trend family
culture on families that willstep in versus families that
don't think that's kind of aresponsibility. It is a it's a
big cultural thing. A lot oftimes, this is
Unknown (07:32):
100% factual. Every single day when we were little,
we saw our family, we saw ourgrandmas, we saw our aunts, our
uncles, or cousins every singleday. Oh, I love that was
ingrained in us.
Natalie (07:44):
Yeah, well, and I think that speaks a lot. And I think,
you know, honestly, and we'vetalked about this in the past,
you know, as our societycontinues to advance, we at
times with technology, we thinkthis is great. I mean, we're
talking to you, you're inanother city, and JJ is in a
different city, and I'm in adifferent city, and technology
has the ability to bring ustogether, but also has a as has
(08:06):
the ability to kind of pull usapart. And I love that you all
were the same way as we weregrowing up. We had 11 cousins
every Sunday. We all went tosome church. We all went and
played, played after. We atedinner after. On Sunday even
tell you it was roast and mashedpotatoes. I mean, it was always
consistent. There's something tobe said for that. And so it
sounds like care was modeled foryou growing up by not only just
(08:30):
your mom and helping to supporther parent, but also her
siblings. And so everybody justsounds like it was a part of it.
It 100%
Unknown (08:40):
was so you
Natalie (08:42):
and your wife, your wife, Michelle. I love already.
I love Michelle already becauseshe played hard to get she's
like, You're cute.
Unknown (08:50):
It was that competitive thing. I think that is a
competitive
Natalie (08:55):
and I've clearly good choice my friend. But then so
then you start having kids, andyou're advancing in your career
and that sort of thing. So Iknow you've got is grace, the
oldest
Unknown (09:05):
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 (09:12):
you know, I'm sitting in my head. I'm sorry.
Unknown (09:16):
Rocky Top, okay, I
Natalie (09:17):
know, I know we could sing. Rocky Top. What point does
care come in because you'veyou've got a good job, you're
advancing in your career, but atwhat point does care start
coming in in your life? Abouthow old were you? If you don't
mind me
Unknown (09:30):
asking, I think it's a great question. Then I think to
fully understand at least mystory on this, you have to go
back just a little bit further.
So my wife and I got married inoh five, which is the exact year
that I joined. So I joinedCaremark, CBS Caremark in August
of 2005 okay, my wife and I gotmarried October of oh five. So
(09:53):
my wife has been with the CVSCaremark journey the entire way.
So. In 2010 I was asked toreally take the first big step
in my career, which was becominga director running the East
Coast for some employercustomers. And that was really a
fork in the rope for us. Is toyour exactly how you all grew
(10:14):
up. We were a tight knit family.
No one lived more than, youknow, a 10 minute car right
right away from each other, andfor me to pick up and leave for
North Carolina to pursuesomething professionally was
unheard of. You think aboutgrowing up in my family, most
aren't doing white collar jobs.
You know, I thought myprofessional track growing up
(10:35):
was Chicago policeman, afireman, electrician, carpenter.
That was always my path. Yeah.
So for me to go outside of thetraditional path, and for me to
leave Chicago was a big deal.
And it's interesting. I onlybring it up because I probably
would have said no to it if itwasn't for my mom. Wow. And if
she it was her that said, No,you have to go chase. That's
(10:59):
your job. You have by 2010 wehad already had two kids, and
her view was, you can't be thisto our family. You have to be
somewhat different for yourfamily. 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 thatcompetitiveness 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 sowe were around her, breakfast,
lunch, dinner, every single day,okay, but I think there is, you
know, my father graduated fromKellogg, Northwestern, okay. He
was extremely smart, yeah, butmy mom was the smartest of the
two, and she also was the onethat had the drive, the push. I
(11:50):
would say my dad was a silentrole model. My mom was a very
vocal and she had very strongopinions.
Okay? I like, like our family, Ilike that Nelly,
very, very and you didn't, youknow, 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, justlike mom. I don't want to, if I
don't want to know, don't askNatalie 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 sonto the cub game, but we spent a
lot of time with my sister, mynieces and my sister. The middle
child has 100% turned into mymother.
Natalie (12:36):
She's yellow mustard.
Man. She's, I mean, the oldestis 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 beenslight, and then there. But, I
mean, you're the baby. And wealways joke with Emily like she
was the baby angel. There was,she never did anything wrong.
And with you being a boy, Imean, that really ups the a
game. I mean, yeah, your dadloved that. Our dad wanted boys,
(12:58):
but he couldn't even get boydogs and so, so, so then you, so
you moved to North Carolina, andI think it's important, I'm glad
that you you qualified, like therelationship that you had with
your mom, between you and yoursiblings and that, because I
think it really does lean intopeople being like, whoa. I can't
believe you did that to help.
And so I'm gonna, I'm actuallygoing to take a pause right now,
(13:21):
because I feel like it's anatural break, Jay, because I
want to go into care. When wecome back
Unknown (13:29):
looking for care in all the wrong places, try care
scout. Our care finder helps youlocate long term care providers
in your area who are committedto quality, person centered care
with care Scout, you can alsoorder a personalized care plan
created by a licensed nurse justfor you. So say goodbye to a
path to aging care that'snothing but confusing, and say
(13:52):
hello to a more dignifiedjourney, including providers who
see you as you and a plan forquality care you can feel good
about Learn more at KristenDaukas,
JJ (14:05):
everybody, we are back with Ed Devaney. We've gotten to this
point where he leaves thehomeland Chicago and he goes to
the south. I'm not sure that'sthis kind of question. He goes
to the south. He goes to thesouth. He goes to North
Carolina. So at what pointyou're here, you're in the
South. You got this fantasticpromotion. You're growing in
(14:25):
this career. When does care comealong? What is this journey that
you're on? What are the nextsteps?
Unknown (14:31):
It coincided with the exact time I entered into
pursuing my MBA from WakeForest. So I was working full
time. I had actually accepted acouple promotions along that
way. This is now, I believe 2015Okay, and that's when we got the
the feedback that she is. Sheactually went in for surgery,
(14:54):
and when she came out of thesurgery, she was never the same.
It was. She would forget littlethings along the way. But when
she came out of that surgery, westill don't fully understand why
is she one from maybe on a scaleof one to 10, having some signs
of dementia to being jumpingfrom one to six. And it happened
(15:15):
kind of overnight, which was alittle bit for our view, very
unexpected, and that createdmass changes, not only for my
parents, my sisters, but for forme 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 thislike a routine surgery, or was
there concern? Because I know atthat point, because you're the
same age as me, although I'llsay you're I'm December 30. So
unless you're December 30, I getto 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 youreally think about it, you're 40
(15:52):
years old. You're, ultimately,you're going to be defined, in
this case, as a sandwichgeneration caregiver. Your
sisters may fall in the samekind of field where you're got
children, and exactly startlooking at what your parents
look at and and what's going onwith them. Your mom goes into
surgery and comes out, andthings feel different. What is
(16:12):
the conversation between you andthe siblings and then you and
the entire family unit? Becausethis 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 theconversation, because we all had
independent thoughts of what wasbest for our mom. So we
proceeded with all, right, let'ssee 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 wewould show up. And you know,
(16:43):
every day my sisters would bethere, 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 needto do this stuff, and we chase
that down. And there was a lotof frustration. I would say,
over the years, especially myoldest sister with my father,
(17:04):
she had a lot of frustration.
She's She's the type A out ofthe 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'min the loudest, she's always and
so I don't know if your sister'salways in charge. If you're just
like because we fall it's funnyhow sibling dynamics are. And if
you want to hit on that for asec too, because Emily and I,
our parents were younger whenthey married and they had us.
(17:35):
Mom was 1921, 23 but wow. And sothey were our mom's only 71 for
example, she just turned 71 ButJJ was always in charge of us,
because my parents both worked.
We were definitely a blue collarfamily. My mom worked for the
government. Our dad worked forthe government, but Jay, we just
naturally fall on that. And wefell into those same kind of
(17:56):
structure, into into adults,because JJ is the primary
preferred of our mom as acaregiver. Is your oldest sister
the primary between the three ofyou, because there's definitely
differences between primariesversus 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 shewould make herself be the lead,
okay? And Kelly and I the themiddle, and me would be like,
All right, here just, just lether 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
(18:38):
undermining like they're atdinner. They're doing their
thing. They're like, let her go.
She's got the guilt martyr typecape on. That's
Natalie (18:46):
true. It is true, and she won't let anybody help at
times. And I will say this. Sodo you all have side text groups
where you and Kelly will have aconversation about your older
sister, and then you and yourolder 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'salmost like a game of survivor
in making decision making. Like,Hey, did you know that JJ wants
to do this? Emily? And Emily'slike, Well, I think about this.
I'm like, Ooh, let's, let's doand then JJ and I'll be like,
Oh, Jay, what do you think aboutthis?
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'salso the same with our mom. I'll
throw that out. There she is.
She plays all of us. Ed, shewill message me and say
something then she'll messageNatalie and say something
different. And I'm like, Did mommessage you this? She was like,
she's playing you. JJ, you're inone 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 sheneeded 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 thathe's kind of like. I don't know
if she ate breakfast or not. Howold 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 in1938 Okay, all right, March, 25
of ninth or 1938 March, 25That's why her name is Mary.
Nine months before Jesus waslike,
Natalie (20:15):
Oh, wow. I love that. I love that. Yeah, so Dad's not
able to keep up as muchconversations that are going on.
So what are, what areinterventions at that point? Are
you guys thinking that you'regoing to have to do if you
think, Hey, I'm not sure thatthis is his strength area, and I
can imagine that being hardbecause he's the head of the
household. I mean, yeah, he'straditional, like I'm so you all
(20:37):
are traditional. We weretraditional,
Unknown (20:38):
very traditional. So I would say that's for friction.
Hit, yeah. And it was, I guess Ididn't realize that during the
time, but there was a lot offriction. So look, we grew up
with a mom that always said, Inever want to be in a home. Oh,
yeah. And I can't tell you howmany times as a kid I committed
(20:59):
to that. I know, and you know,so we did, I would state in my
sisters the same way theycommitted to it. And now all of
a sudden, we're in the situationof saying, oh my god, like, how
do we break the promise we gaveto her? Yeah, so we did
everything possible, right? Sowe got a live in nanny. And, you
(21:23):
know, my mom could be abrasive,so we went through a churn of
caregivers that lived in thehouse. And all along this way
was we wanted our father to playthat nurturing role, yeah, but
the reality was, I knew itearly. He just didn't have it.
(21:43):
Yeah, that's not who he was. Sojust give you background to him,
because I feel like I'm sellinghim short. Yeah, he grew up. His
parents were immigrants fromIreland. He grew up with
nothing. They they worked, youknow, blue collar jobs. And when
he was young, they would givehim a quarter and say, Hey, go
ride the Chicago bus line allday. Like he just didn't grow up
(22:05):
with that nurturing side. And Iknew he didn't have it. And we
were kind of at this point whereI think me and my middle sister
going to make connecting thedots here. We would text each
other and be like, Dad justdoesn't have this. This is an
uphill battle. We're going tolose it. I would say my oldest
sister kept fighting it andsaying, you need to do this. You
(22:26):
need to do that. And she, forlack of better word, she was a
bulldog on it. And you know,that led to tension with her and
my father, and we went throughthis 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, shehad no idea who I was. She had
(22:46):
no idea who my kids were. Youknow, me being out of town only
there one or two days a week.
She would remember stories abouta baseball game I played in when
I was eight years old, but shecouldn't remember a conversation
I had with her three minutesprior to that. So we created it.
(23:07):
Created a dynamic of we had tobite the bullet, we had to do
what we promised we would neverdo. And, gosh, this is almost
like a psychiatry session. Inever thought about it, but it
was honestly reflecting back. Itwas 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 ourfamily, either side, to ever go
into a skilled nursing and thefeelings that come along with
that, there's guilt. JJ is incharge of carrying all the
guilt. Oh yeah, she carries thatfor everybody. But there's
guilt, because it's, it does,and it doesn't make Kristen any
less. And so you mentioned I'dsee my mom once or twice, you
(23:47):
know, once or twice, two days aweek. But you're seeing her, not
virtually. You're, you're goingback and forth. So how did you
and your siblings say we'regoing to support dad? And this
is what the schedule is going tobe like. Oldest sister takes
takes these tasks. Middle sisterdoes this. I do this piece like,
how did you all navigate thatout? And what did that look
(24:09):
like? Because you flew back andforth. That's what caught me.
About your attention. You weregoing 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 travelextensively, so I had racked up
airline points where I could doit. So yeah, I mean, I think the
way we set it up was Mary, Kateand Kelly. They would own the
week and I would own theweekends. Now the detriment was,
at this point, 2015 I had aneight year old daughter. I had a
(24:40):
six year old daughter, and I hada son that was just born. So you
talked about the burden, I thinkI'm sorry someone is calling me
on a cell phone. Is the burden Ithis put on my wife and my
family was a really big deal,and I know. My sisters feel the
(25:00):
exact same way. They missboarding events. They missed
activities at school. The normalstuff your parents do when you
step into a caregiver role thatis a priority, and that then
results in you missing a lot ofthings that I kind of look back
on it. I don't regret it, but Iam 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, sothere's always the normal guilt
that comes with that. I mean,I've traveled a lot with
positions I've been in where Itravel out of state as well, and
but I didn't have children, andso it's one thing. I think it's
one thing to miss your spouseand what that that impact of
that travel and care has on thatrelationship, but it's also
(25:42):
another the impact that has onyour children as well. What
conversation did you and yourwife have about this? Does she
get at some point like, buddy,it's tired over here. I was
tired. I would love to see youon 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 forWinston Salem,
JJ (26:04):
that's right, yeah, but that executive MBA program, I totally
understand so that I got thatthat'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. Iwouldn'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 onenight with my wife, one night
with my kids, and then Saturdaymorning, first thing, I would
fly out to be there for theweekend. And, you know, fly back
(26:35):
Sunday night, have dinner withthe family, and then it was a
rinse and repeat the exact samething, 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, andeverybody's like, okay, Ed, you
can back off a little bit. Youknow, we know that you're having
a hard time. First of all, youknow, 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 doingthis stuff, so anyone I worked
with had no idea. My friends hadno idea. But it was also the
time I actually, in my life,started getting very healthy.
Okay? It that was the point intime. It was after I finished my
MBA that I said, I don't want towake up at 5am but I'm going to
(27:26):
go to the gym every day at 5amand to this day now, I'm not six
days a week like I wasinitially, but I'm still four or
five, and that is just somethingthat, if you look at, I look at
how my parents retired, whatshould have been their best
years, and them physically nottaking care of themselves. They
are what I don't want to be,yeah. And that is the drive I
(27:48):
have every single day when Iwake 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 thatfeels so chaotic. When Jason and
I were in New York for histreatments, there were things
that I had to do that was like,I can do this thing. I can
control this. Because there'sthese times when you have no
control. And I can imagine goingand seeing the toll that it
takes on you emotionally tovisit your mom for those two
(28:26):
days her not to really recognizeyou and and how to navigate
through that, and then all theother things, navigating the
relationships with your sisters.
And how do we do this? Andwhat's this? You know, I will
say that when we had to finallymake the decision and have that
conversation with mom aboutgoing into skilled nursing, it
was, it was, we agree, it's thehardest decision you ever have
(28:47):
to make, because that's not whatyou 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 andI fought about this, did you
guys fight? Or was it a logicalconversation?
JJ (29:04):
It was, and you mentioned it, and I actually, every time I
tear up, we're like Kleenex. Youcan sponsor us. I tear up when
we talk about it still, and it'sbeen years Ed because we
promised we would never do it.
And for me, I feel like we Ifailed my dad, because it was my
responsibility to take care ofher. We went in, Emily was
taking care of her. 24/7,basically, we had tried that for
(29:24):
seven months, and we realizedthat 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 tobe 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 thatdiscussion with her, but it's
still today. She always asked mewhen I talked to her, Do you
think maybe I could go out andlive in assisted living, or I
could come out again and wecan't care for and so and every
day, it's still hard, and it is.
We finally though we have asister to make me cry. I'm
sorry. Sorry, we have a systemwhere, although we may disagree
(30:01):
about something, when a decisionis made, we go along. We make
the decision and we followthrough with it. We can't
Natalie (30:12):
argue about it. The skilled nursing wasn't actually
the argument. It was. Our momhad been in assisted living, and
she'd had three failedplacements because they felt
like they couldn't meet herneeds, otherwise known, as she
had showed her rear. And so shewas also a touch difficult I get
it honest, Emily wanted Emilyquit her job, moved from Indiana
and moved back home to care forour mom, and so we pulled her
(30:34):
back out. And that's and thereason we did that, though, is,
and then again, this is why wehave such a great relationship
with you guys is because mom wasable to get a duopa pump and but
it was only able to be given toher if she was in the home or in
a skilled nursing so shecouldn't have this magic pump in
assisted living, by regulation,but in an stupid regulation,
(30:57):
because I'm like anybody couldadmit, can clean out the flush
out the device. But Emily quither job, which is not uncommon
for caregivers, and moved inwith our mom, but then we didn't
have the support. I'm the onewho 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
(31:19):
think we want to do, and youhave 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 youdon't want them to fail. Being
right means that somebody is, Iknow it fails. So when you guys,
(31:39):
who was the one who was feltlike the holdout. And the
question would have been, forme, 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 thepromise that we all made to her,
yeah, and this is young, like wewere like, she would tell me,
Eddie, six years old, somethingever happens to me, I'm not
going like promise me, becauseshe had seen it with some of her
(32:09):
aunts and uncles. So we wethought about it. I mean, I had,
my wife is fantastic, right?
It's the fact that she let me dothis. She even allowed me to
even offer us an option for herto come live with us. Wow, but
that didn't work out. It's bigfamily Chicago. She's not
leaving Chicago. That's off thetable. You're coming to us.
(32:31):
Yeah, you guys probablyunderstand how that dynamic
works out as well. So we did. Iwould say we exhausted every
option, living with my sisters,living in none of it. We knew
none of it would work, and weprobably should have made that
decision six to nine monthsearlier. But really the impetus
was we grew up in a split level,1100 square foot home is we were
(32:55):
worried she would fall and breakher hip. Oh, yeah. And in my
head, as soon as you know you'repushing close to 80 and you
break your hip, that's not agood spot to be, that's right.
So that was, that was when wecollectively 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'mlike, oh, so we're going to take
a break, Jay, and we're going tocome
Unknown (33:23):
right back. Care forward is a technology platform
that connects volunteers withseniors, the disabled and those
with chronic or complex healthconditions, offering support
like transportation, home visitsand more details
online@careforward.io
JJ (33:38):
All right, everybody. We are back here with Ed Devaney, and
we've gotten into some toughtopics, and one of them, of
course, is making that decisionto put that loved one in a
skilled nursing facility. Andyou guys all know that's a tough
topic for me, Ed, from there,what? What happens? I know that
your mom is in really advancedAlzheimer'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 inevery weekend. It was probably
every other weekend, and I wouldmake a point to go see her and
look you're you're havingconversations with someone who
has no idea who you are, whichmade it makes it hard, but there
was glimmers of she would saythings, and I would sit there
(34:25):
and I would just laugh. I'mlike, 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 malestereotype, but I think it
happens more with males thanfemales, because we're awfully
chatty. You mentioned that youdidn't really tell your friends
about this. You didn't talk toyour friends. I mean, I know you
talked to your wife. I know yourkids saw you. You know, saw this
(34:48):
going on. But this feels veryclose, you know what? I mean,
like, very kept tight, close toyou. Because this is, in the
end, it's very it's alwayspersonal and there. And for me,
I didn't even talk. People aboutJason having cancer, except for
a small select group of peopleconsidering what I do from a
business development standpoint,like 100 of my closest friends.
(35:08):
But I mean, it was not put outthere for the world to see,
because it made me feel veryvulnerable. It made me feel like
open up for scrutiny of, Am Imaking the right decisions with
him, that sort of thing. Who didyou talk to at this point? Did
you talk to your friends aboutit? Did you talk more at work
about it? Because you've beengoing 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 infront on the other, and you go
and no matter what. So I it wasfunny. In advance of this, I
actually pulled up the eulogy Iwrote for my mom's funeral. And
I think a lot of the way Ibehaved, and I didn't really
(35:48):
recognize it until I reflectedback on the eulogy. It was all
about quit your boo hooing. I'llgive you, I'll give you a story.
My sophomore year of highschool, one of my good friends
committed suicide. I kid younot, 24 hours later, my mom is
in my ear saying, Look, life isfor the living. You have to move
on. Like that was the way sheinstilled and it was, quit your
(36:13):
boo hooing. Life is here,whether you are prepared for it
or not, and you need to go themore you think about this stuff,
the more you absorb it, theworse off you're going to be. So
just go now. I don't think theway I handled it was right.
Yeah, I probably should havetalked to it, talk to people. My
wife was really the only one Iever had a conversation with,
(36:39):
and if people in work would askme, I would do my damnedest to
make that a very shortconversation 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 namedCEO of a behavioral health
company. Jason was diagnosed atFebruary 14, and actually March
the fourth. It was confirmed onValentine's Day. Oh yeah,
nothing says Happy Valentine'sDay. Like, hey, we think, Oh,
(37:09):
wow, you don't forget, by theway. And then I was named CEO on
April 1, which seemedappropriate as well, because
that's April Fool's Day. And Ithought I could do it all. I
mean, if I'm really honest aboutI thought I'd do it all, and I
my backgrounds. People werelike, Oh, your background is so
cool. And I'm like, yeah, it'sreal. It's the background of
that's the Kristen buildingright behind me. And because I'm
(37:30):
on the 15th floor, and Jason'sgetting an infusion, and so,
wow, think about those kinds ofthings. And so my question to
you is, how to and I'm going totell you, I quit my job six
months after we got back. I wasdifferent, really? Yes, I did,
like most people would be like,I can't believe you quit your
job. You've worked to thispinnacle. You wanted to be CEO.
(37:50):
I planned on being the I plannedon retiring from intercept, and
I was so different. And so forme, it changed the complete
trajectory of my life. But Ialso tried to take my lived
experience and apply that intothe workplace. Because I knew my
privilege. I knew not manypeople moved to New York City
(38:13):
and live in Midtown, so you canget treatment at the number one
place in the in the world,basically, which is Memorial
Sloan Kettering for head andneck, sure. I just met with
them, yeah, and I'm going totell you, they are amazing, but
there is something. But I knewthat I had to do something
different for my employees. AndI had an owner, respectfully to
him, who just we weren't alignedany longer, and my experience, I
(38:38):
felt like I needed to take thatexperience and do something with
it. You know, Jay, I know thatwe'll be like, Oh my gosh, our
time is almost up, which clearlymeans 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 discussionwith your own children? Have you
placed any type of obligationson them? Or what are your
thoughts about yours and yourwife's life as you get older,
Unknown (39:22):
it's interesting the conversations I'm having with my
daughters now, so just goingback is I just dropped her off
two weeks ago at Knoxville,yeah, and the conversations I'm
having with her are reallyalmost apologetic that look, I
know I miss a lot of your life.
And that's work. That's, youknow, what I had to do for my
(39:43):
family back in Chicago. And mygoal in life is to be really
active when you have kids. Iwant to be front and center. I
don't care what it takes. I'mgoing to be there. Whether I'm
going to you, you're coming tome and. And my wife and I are
already talking about, what'snext in our life? Do we keep
this house? Do we buy a farm andhave ATVs and horses to get our
(40:05):
grandkids to come in
Natalie (40:09):
down there? We're your honorary sisters. You have no
clue. We're like, oh, we justshowed 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 theconversations we're starting to
have. So I guess to sum up, JJis, I feel a little guilt in the
family, but you know, how can Imake up for that? This past
weekend, I took my son toChicago. I do a daddy daughter
(40:36):
weekends with my individual, youknow, with grace and Chloe. So
I'm trying to find, well, Idon't have all the time in the
world. I'm trying to findmeaningful time, yeah,
purposeful one on one
JJ (40:48):
time, expectations that they will do the same. Though. Have
you ever had the discussion tosay to them, I never want to go
into a home? Or is thatsomething they know I
Unknown (40:57):
was trying to I was trying to duck that question.
Come on. I didn'trealize 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. Iunderstand, and I think it's
because of the guilt that Istill carry. Yeah, I
Natalie (41:19):
know, you know, I think, Ed, there's so many
people who don't want to havethe conversation for many
reasons, many reasons. And youknow, JJ and I were just her, I
was, we were just talking aboutit the other day. Here's a
spoiler alert. JJ and Dexterdon't have everything set up the
way they need it to, becauseDexter'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'mlike, because we don't have
kids, and I'm like, That'sright, you've got to, we got to
find other people's kids to helpus. Because, I mean, I've got to
be a good aunt. I mean, I'mtrying to woo my other nieces
and my honorary God children.
But I think that's those areimportant things to have those
discussions sooner than later,because I'm going to tell you
(42:12):
when you get cancer at 55 youdon't expect it scary. It is
scary, and I think that's whyit's so we preach it over and
over again to everybody, butjust understand it's hard. It's
not just easy. You just go anddo it, because these are hard
conversations because of ourpast experiences.
Unknown (42:32):
My wife and I, to your guys, point we just started
having these conversations. Myview on life has always been,
earn, save and invest. And nowyou hit a different point with
kids growing up. And we're wehave new life insurance, setting
up new wills. We're in thatprocess right now. And I don't
(42:54):
know what your perspective ittakes 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 aboutultimately 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 tolook forward, in the sense of
looking forward, like, and wedon't know No day is guaranteed,
but we don't. We talk aboutnever aging, but, and that's why
we're talking about, let's age.
Well, age well, looks like beingthere were three things. We were
(43:28):
at a conference last week, Edand I think you'll you guys
align with this 100% we know theimportance of how the impact of
isolation and how that impactsyour overall health and
wellness. We also food andworking out food and fitness,
and the fact, when you said, I'mnot going to not be healthy,
because they talk about yourchronological age, most people
are living to be in the US. Men,I believe, are 70, and they're
(43:53):
7074, I believe, is what it was.
And women live to be 80, andgive or take, and but their
health age is about stops atabout 65 and that just when they
start feeling more aches andpains. Because I'm telling you
right now, friend, I am feelingsome aches and pains, but I'll
(44:13):
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 oftime with it. We love him, but I
have. I had one more question,but I probably forgot it.
Natalie, well, that's this, wasit this? Was it my it's my whole
menopause brain. You don't needto know that, Ed, but anyway, so
here it is. You mentionedsomething earlier, and I want
people to know about this. Yousaid that sometimes you you felt
(44:37):
like you didn't do a great job.
And there's so many of ourlisteners that say I'm not doing
a great job. I could have donebetter. Will you just tell me a
little bit about that? The partbeing, what would you say to
somebody out there today thatsays 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. Ithought I failed my father. I
thought it was failed. Only mysisters, and it was constant. No
matter what I did in my head, itwas never enough, and I would
stay reflecting on that. I wishI would have pulled up and asked
(45:13):
for help, and it's interestinghow I lead now that is so I
probably didn't answer yourquestion, right, Natalie,
earlier, but that's probably thebiggest lesson I had from that,
and it plays out every day inwork. I asked for help all the
time. I asked for help from mywife. I asked for help from my
(45:36):
kids, my sisters. I asked forhelp with all my co workers that
hey, I'm trying to achieve a, band c. I'm stuck on this. You
know, how would you think aboutit? It? I probably wouldn't have
been open. I wouldn't have beenas vulnerable without going
through that experience and JJand Natalie. I don't know what
(45:58):
you guys think, but every day Iwas in that I felt like I was
failing. Even on my mom's theday 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 neversaw, the things I did well. I
just saw the things like Ididn't cook this meal, although
everybody who knows me knows Idon't cook, and so trust me, my
husband's a great cook. You arewelcome to come up to Virginia.
Everybody's welcome to come toVirginia. It's for lovers. But I
(46:30):
always I focused on the wrongthings, and I really you have to
find those moments where there'sglimmers where exactly when you
said you'd laugh with your mom.
That touched my heart in themoments that you said you sat by
her bedside, and she'd saysomething, there's my mom. Yeah,
there was a moment for me that Iwas like Jason and I were just
(46:50):
like everybody else, sitting onthe on the on the river. We were
looking at the river atRoosevelt 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 isreally excessive right now. It's
overwhelming. And so she callsand she wants me to fix it, and
I can't fix it, and I've calledand, you know, talk to the
doctor, but you take that withyou, you know, you go to sleep
(47:30):
at night, and I've failed that.
Why can't I get that fixed? I'veis there another piece of,
another component? You know,I'll share this with you.
There's a fantastic new medicineout 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. Ithasn't passed. And you're like,
I have to work harder. I have towork harder. I'm failing at
(47:51):
this. Why can't I figure it out?
But every I think everybodydoes. We hear that from so many
people, because I think itultimately you want to heal that
person. I think ultimately,that's where your heart is. And
if you can't heal them, thenyou've failed, and I think
that's a big part of it, but Iwill say to you, because I know
what you have done. If you wereto just look at one person, that
(48:13):
you changed, you changed us thatday, that you helped me. And I
don't want to get all teary,Monica knows. You know your
whole staff does, but youchanged our lives with helping
my mom and your mom. You You didsomething 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 didthough,
Natalie (48:37):
but you did. You did well with your mom, yeah, no
matter for you and yoursiblings, no matter all the
things that may have not gonethe way that you had hoped it
for these siblings are here tosay 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 totallyfine, because you can tell I
always talk the most. Oh yeah,my question is always fun. And I
had other questions, but I don'tcare, because this is my
favorite question. Anna wasmindful of our time, yes, so
I'll always end the show withtell me what your favorite
guilty pleasure is. What is theone thing that you do just for
you that brings you joy andmakes you smile? What's the
(49:14):
thing that you enjoy doing justfor you?
Unknown (49:16):
Um, that's a great question, and I probably have
multiple guilty pleasures, but Ilove hamburgers.
Oh, who'swhere, so this weekend, so I
actually, you watch the, gosh, Ican't Dave Portnoy, he does like
the pizza tracker. I'm not a bigpizza person, yeah, but I
monitor, like the besthamburgers. So I'll send you
(49:39):
guys a picture. We went to AUChevelle this weekend. They open
up at 10am I got first in lineat 902. To be first in and I
love a good hamburger. If youever go to Chicago, West Loop,
au cheval, it is amazing. Oh. Sothat's my guilty pleasure. I've
(50:00):
eaten every every night I've hadfish 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, thankyou so much. You're so
wonderful. You are officiallyour brother. We don't even have
brothers, but you areofficially, officially one
sisters. You have no free will.
Sorry, sorry and so but thankyou for being with us. We
appreciate you more than youknow, 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 forlistening. But before you go,
please take a moment to leave usa review and tell your friends
about the confessions podcast.
Don't forget to visit ourwebsite to sign up for our
newsletter. You'll also find thevideo recording of all of our
episodes on the confessionswebsite and our YouTube channel.
(50:58):
Don't worry. All the details areincluded in the show notes
below. We'll see you nextTuesday when we come together to
confess again. Till then, takecare of you. Okay, let's talk
disclaimers. You may besurprised to find out, but we
are not medical professionalsand are not providing any
(51:20):
medical advice. If you have anymedical questions, we recommend
that you talk with a medicalprofessional of your choice. As
always, my sisters and I, atConfessions of a reluctant
caregiver, have taken care inselecting speakers, but the
opinions of our speakers aretheirs alone. The views and
opinions stated in this podcastare solely those of the
(51:43):
contributors and not necessarilythose of our distributors or
hosting company. This podcast iscopyrighted and no part can be
reproduced without the expressedwritten consent of the
sisterhood of care LLC, thankyou for listening to The
Confessions of a reluctantcaregiver podcast.
Hey guys, it's your favorite sisters with the
Confessions of a reluctantcaregiver. Podcast on the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected,you're guaranteed to relate, be
inspired, lead with helpful tipsand resources, and, of course,
laugh. Now let's get to today'sconfession. Hey Jay,
Unknown (00:38):
good morning. How are you doing? I'm hoping you don't
sing.
Natalie (00:42):
I'm thinking about singing, Oh, it's too late
already saying,
Unknown (00:47):
I know it's kind of early. So I'm like, please don't
sing. No, I
Natalie (00:50):
can sing. It's a beautiful morning. Well, okay,
I'm gonna stop because this isnot the voice, although we do
love voice, I think we've got anamazing guest today, and Jay, we
have
Unknown (01:06):
a boy. I know you already do my voice. It's a boy.
Natalie (01:10):
I love when we have men caregivers on, because they're
really I think people don'tthink of males as caregivers.
And every time we have a maleon, 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 thinkthese stories are super
important because it's adifferent perspective. It is
(01:31):
different perspective, adifferent experience. And I'm
super excited, and we have areally awesome guest, and tell
everybody
JJ (01:39):
about him, okay? And I'm going to keep it short that way.
I don't tell the whole storyNatalie, because Okay, guys,
today, I would like to say thatwe are absolutely honored to
have Ed Devaney with us. He hasan immense number of
professional accomplishments.
I'll say that out especiallyleading an organization that
means so much to these sisters.
(02:00):
So it's really no surprise thathe also has a caregiving story.
His mother was diagnosed andlived with both Alzheimer's and
dementia for years, and hisfather couldn't take care of her
in the ways that she reallyneeded, but that put her in the
care of Ed and his sisters, hehas sisters, oh yeah, no, with a
career and a family of his own.
Obviously, that just shows thatcaregiving does not wait. Ed. We
(02:22):
are so honored to have you herewith us. Thank you so much,
Unknown (02:30):
Natalie and JJ, it's nice to see you. I don't think
we've seen each other since NewOrleans, correct? That's right.
Natalie (02:36):
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'resuper happy to have you on the
show. And I think where we wantto start is, where I always
start is we want everyone toknow about about you. So we
(02:58):
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 upto care.
Unknown (03:10):
I so I appreciate the opportunity to join you and just
reflecting back, it's we're allborn in Chicago. I am, to your
point, is raised with the motherand father, two older sisters,
so I'm number three in the birthorder, baby.
And I would characterize ourgrowing up as everything was
(03:34):
about competition. In thefamily, it was all about
competing. It was every nightplaying different board games,
card games. We were all veryactive in sports and competing.
And it was really our mom thatpushed us that that route. And,
you know, while I actually gotrelocated, Gosh, 2010 to
(03:55):
Charlotte, North Carolina,shortly after that is really
where my mom was diagnosed withdementia and Alzheimer's. So it
was, I want to be very clear upfront, my sisters carried most
of this burden. I played a rolein it, but they, as the two
sisters, they really carried themajority of the daily taxing, I
(04:17):
would say it had on ourcollective lives.
JJ (04:21):
Yeah, I love when I also jump in and say that. I love
when siblings, though, are ableto give credit to the other,
because we're able to do thatwith Emily a lot of times,
families like well, I did thispart, and I did this part, but
when you're able to say that mysister's carried a big part, you
don't know how much that meansto the other sisters the other
siblings, is to get credit forthat. So kudos for that. So I
(04:42):
have a question, because
Natalie (04:43):
I'm going to back you up a little bit, because I need
to know a little bit more. Soyou were raised, what's the age
difference with you and yoursiblings?
Unknown (04:51):
So I was born 1975
Natalie (04:54):
oh, clearly the best year ever. Me too. Yeah.
Unknown (04:57):
And Kelly is three.
Years older than me, and MaryKate is four years older than
me.
Natalie (05:03):
Okay, so similar to us.
We're two. We're all two yearsapart, so we support that. So
you had normal childhood. I lovethat you were competition, like
competitive. I think that'ssuper fun. Close, it sounds like
close knit family, and went tocollege, I'm assuming met wife,
because I know you've got youhave also two girls and a boy.
So tell us a little bit like yougot married. Tell us a little
(05:25):
bit about the work your way upto it, because you can't leave
out the juicy part.
Unknown (05:31):
So I would say I graduated college, moved
downtown Chicago, happened to beat a party with some of my
friends that I knew in collegethat was up in Milwaukee, I
happened to meet my wife to wasdating someone else at that
point. I consistently asked herout. She consistently shot me
(05:52):
down.
Natalie (05:53):
We like her. We like her already. And
Unknown (05:57):
eventually I wore down for she said yes and gosh in oh
five, we finally married.
Persistence, I know
Natalie (06:07):
then children come along, because you're working at
this time, right? You're you'vegot your job. You all have life
going on now. Are you siblingsall in Chicago too? Still, did
everybody stay in chicago untilyou got moved? I know you said
you got moved 15 years ago toNorth Carolina,
Unknown (06:22):
big Irish Catholic family. Everyone still lives in
Chicago and still has no ideahow I could ever have taken a
job outside of not only the citybut the state.
Natalie (06:33):
I knew you were Irish Catholic. I just felt it because
of Chicago. But you do only havethere's only three of you, so I
don't want to talk. I don't wantto your parents about that, not
your traditional I mean, we metup with Tricia last the other
day and recorded hers, and shewas a good Irish Catholic
family, and they were six.
Unknown (06:50):
It's interesting, because if you think of the
theme of what you're doing is mymother was a caregiver for her
mother. Oh, yeah, ah, her fatherhad issues with alcohol, and he
died very young, which thenmeant her and her siblings all
had to go out and get jobs muchyounger, get their degrees along
(07:12):
the way, while working full timeso they could pay the mortgage.
JJ (07:17):
We see so many families like that, just depending on
backgrounds. And there's athere's just a trend family
culture on families that willstep in versus families that
don't think that's kind of aresponsibility. It is a it's a
big cultural thing. A lot oftimes, this is
Unknown (07:32):
100% factual. Every single day when we were little,
we saw our family, we saw ourgrandmas, we saw our aunts, our
uncles, or cousins every singleday. Oh, I love that was
ingrained in us.
Natalie (07:44):
Yeah, well, and I think that speaks a lot. And I think,
you know, honestly, and we'vetalked about this in the past,
you know, as our societycontinues to advance, we at
times with technology, we thinkthis is great. I mean, we're
talking to you, you're inanother city, and JJ is in a
different city, and I'm in adifferent city, and technology
has the ability to bring ustogether, but also has a as has
(08:06):
the ability to kind of pull usapart. And I love that you all
were the same way as we weregrowing up. We had 11 cousins
every Sunday. We all went tosome church. We all went and
played, played after. We atedinner after. On Sunday even
tell you it was roast and mashedpotatoes. I mean, it was always
consistent. There's something tobe said for that. And so it
sounds like care was modeled foryou growing up by not only just
(08:30):
your mom and helping to supporther parent, but also her
siblings. And so everybody justsounds like it was a part of it.
It 100%
Unknown (08:40):
was so you
Natalie (08:42):
and your wife, your wife, Michelle. I love already.
I love Michelle already becauseshe played hard to get she's
like, You're cute.
Unknown (08:50):
It was that competitive thing. I think that is a
competitive
Natalie (08:55):
and I've clearly good choice my friend. But then so
then you start having kids, andyou're advancing in your career
and that sort of thing. So Iknow you've got is grace, the
oldest
Unknown (09:05):
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 (09:12):
you know, I'm sitting in my head. I'm sorry.
Unknown (09:16):
Rocky Top, okay, I
Natalie (09:17):
know, I know we could sing. Rocky Top. What point does
care come in because you'veyou've got a good job, you're
advancing in your career, but atwhat point does care start
coming in in your life? Abouthow old were you? If you don't
mind me
Unknown (09:30):
asking, I think it's a great question. Then I think to
fully understand at least mystory on this, you have to go
back just a little bit further.
So my wife and I got married inoh five, which is the exact year
that I joined. So I joinedCaremark, CBS Caremark in August
of 2005 okay, my wife and I gotmarried October of oh five. So
(09:53):
my wife has been with the CVSCaremark journey the entire way.
So. In 2010 I was asked toreally take the first big step
in my career, which was becominga director running the East
Coast for some employercustomers. And that was really a
fork in the rope for us. Is toyour exactly how you all grew
(10:14):
up. We were a tight knit family.
No one lived more than, youknow, a 10 minute car right
right away from each other, andfor me to pick up and leave for
North Carolina to pursuesomething professionally was
unheard of. You think aboutgrowing up in my family, most
aren't doing white collar jobs.
You know, I thought myprofessional track growing up
(10:35):
was Chicago policeman, afireman, electrician, carpenter.
That was always my path. Yeah.
So for me to go outside of thetraditional path, and for me to
leave Chicago was a big deal.
And it's interesting. I onlybring it up because I probably
would have said no to it if itwasn't for my mom. Wow. And if
she it was her that said, No,you have to go chase. That's
(10:59):
your job. You have by 2010 wehad already had two kids, and
her view was, you can't be thisto our family. You have to be
somewhat different for yourfamily. 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 thatcompetitiveness 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 sowe were around her, breakfast,
lunch, dinner, every single day,okay, but I think there is, you
know, my father graduated fromKellogg, Northwestern, okay. He
was extremely smart, yeah, butmy mom was the smartest of the
two, and she also was the onethat had the drive, the push. I
(11:50):
would say my dad was a silentrole model. My mom was a very
vocal and she had very strongopinions.
Okay? I like, like our family, Ilike that Nelly,
very, very and you didn't, youknow, 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, justlike mom. I don't want to, if I
don't want to know, don't askNatalie 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 sonto the cub game, but we spent a
lot of time with my sister, mynieces and my sister. The middle
child has 100% turned into mymother.
Natalie (12:36):
She's yellow mustard.
Man. She's, I mean, the oldestis 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 beenslight, and then there. But, I
mean, you're the baby. And wealways joke with Emily like she
was the baby angel. There was,she never did anything wrong.
And with you being a boy, Imean, that really ups the a
game. I mean, yeah, your dadloved that. Our dad wanted boys,
(12:58):
but he couldn't even get boydogs and so, so, so then you, so
you moved to North Carolina, andI think it's important, I'm glad
that you you qualified, like therelationship that you had with
your mom, between you and yoursiblings and that, because I
think it really does lean intopeople being like, whoa. I can't
believe you did that to help.
And so I'm gonna, I'm actuallygoing to take a pause right now,
(13:21):
because I feel like it's anatural break, Jay, because I
want to go into care. When wecome back
Unknown (13:29):
looking for care in all the wrong places, try care
scout. Our care finder helps youlocate long term care providers
in your area who are committedto quality, person centered care
with care Scout, you can alsoorder a personalized care plan
created by a licensed nurse justfor you. So say goodbye to a
path to aging care that'snothing but confusing, and say
(13:52):
hello to a more dignifiedjourney, including providers who
see you as you and a plan forquality care you can feel good
about Learn more at KristenDaukas,
JJ (14:05):
everybody, we are back with Ed Devaney. We've gotten to this
point where he leaves thehomeland Chicago and he goes to
the south. I'm not sure that'sthis kind of question. He goes
to the south. He goes to thesouth. He goes to North
Carolina. So at what pointyou're here, you're in the
South. You got this fantasticpromotion. You're growing in
(14:25):
this career. When does care comealong? What is this journey that
you're on? What are the nextsteps?
Unknown (14:31):
It coincided with the exact time I entered into
pursuing my MBA from WakeForest. So I was working full
time. I had actually accepted acouple promotions along that
way. This is now, I believe 2015Okay, and that's when we got the
the feedback that she is. Sheactually went in for surgery,
(14:54):
and when she came out of thesurgery, she was never the same.
It was. She would forget littlethings along the way. But when
she came out of that surgery, westill don't fully understand why
is she one from maybe on a scaleof one to 10, having some signs
of dementia to being jumpingfrom one to six. And it happened
(15:15):
kind of overnight, which was alittle bit for our view, very
unexpected, and that createdmass changes, not only for my
parents, my sisters, but for forme 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 thislike a routine surgery, or was
there concern? Because I know atthat point, because you're the
same age as me, although I'llsay you're I'm December 30. So
unless you're December 30, I getto 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 youreally think about it, you're 40
(15:52):
years old. You're, ultimately,you're going to be defined, in
this case, as a sandwichgeneration caregiver. Your
sisters may fall in the samekind of field where you're got
children, and exactly startlooking at what your parents
look at and and what's going onwith them. Your mom goes into
surgery and comes out, andthings feel different. What is
(16:12):
the conversation between you andthe siblings and then you and
the entire family unit? Becausethis 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 theconversation, because we all had
independent thoughts of what wasbest for our mom. So we
proceeded with all, right, let'ssee 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 wewould show up. And you know,
(16:43):
every day my sisters would bethere, 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 needto do this stuff, and we chase
that down. And there was a lotof frustration. I would say,
over the years, especially myoldest sister with my father,
(17:04):
she had a lot of frustration.
She's She's the type A out ofthe 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'min the loudest, she's always and
so I don't know if your sister'salways in charge. If you're just
like because we fall it's funnyhow sibling dynamics are. And if
you want to hit on that for asec too, because Emily and I,
our parents were younger whenthey married and they had us.
(17:35):
Mom was 1921, 23 but wow. And sothey were our mom's only 71 for
example, she just turned 71 ButJJ was always in charge of us,
because my parents both worked.
We were definitely a blue collarfamily. My mom worked for the
government. Our dad worked forthe government, but Jay, we just
naturally fall on that. And wefell into those same kind of
(17:56):
structure, into into adults,because JJ is the primary
preferred of our mom as acaregiver. Is your oldest sister
the primary between the three ofyou, because there's definitely
differences between primariesversus 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 shewould make herself be the lead,
okay? And Kelly and I the themiddle, and me would be like,
All right, here just, just lether 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
(18:38):
undermining like they're atdinner. They're doing their
thing. They're like, let her go.
She's got the guilt martyr typecape on. That's
Natalie (18:46):
true. It is true, and she won't let anybody help at
times. And I will say this. Sodo you all have side text groups
where you and Kelly will have aconversation about your older
sister, and then you and yourolder 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'salmost like a game of survivor
in making decision making. Like,Hey, did you know that JJ wants
to do this? Emily? And Emily'slike, Well, I think about this.
I'm like, Ooh, let's, let's doand then JJ and I'll be like,
Oh, Jay, what do you think aboutthis?
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'salso the same with our mom. I'll
throw that out. There she is.
She plays all of us. Ed, shewill message me and say
something then she'll messageNatalie and say something
different. And I'm like, Did mommessage you this? She was like,
she's playing you. JJ, you're inone 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 sheneeded 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 thathe's kind of like. I don't know
if she ate breakfast or not. Howold 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 in1938 Okay, all right, March, 25
of ninth or 1938 March, 25That's why her name is Mary.
Nine months before Jesus waslike,
Natalie (20:15):
Oh, wow. I love that. I love that. Yeah, so Dad's not
able to keep up as muchconversations that are going on.
So what are, what areinterventions at that point? Are
you guys thinking that you'regoing to have to do if you
think, Hey, I'm not sure thatthis is his strength area, and I
can imagine that being hardbecause he's the head of the
household. I mean, yeah, he'straditional, like I'm so you all
(20:37):
are traditional. We weretraditional,
Unknown (20:38):
very traditional. So I would say that's for friction.
Hit, yeah. And it was, I guess Ididn't realize that during the
time, but there was a lot offriction. So look, we grew up
with a mom that always said, Inever want to be in a home. Oh,
yeah. And I can't tell you howmany times as a kid I committed
(20:59):
to that. I know, and you know,so we did, I would state in my
sisters the same way theycommitted to it. And now all of
a sudden, we're in the situationof saying, oh my god, like, how
do we break the promise we gaveto her? Yeah, so we did
everything possible, right? Sowe got a live in nanny. And, you
(21:23):
know, my mom could be abrasive,so we went through a churn of
caregivers that lived in thehouse. And all along this way
was we wanted our father to playthat nurturing role, yeah, but
the reality was, I knew itearly. He just didn't have it.
(21:43):
Yeah, that's not who he was. Sojust give you background to him,
because I feel like I'm sellinghim short. Yeah, he grew up. His
parents were immigrants fromIreland. He grew up with
nothing. They they worked, youknow, blue collar jobs. And when
he was young, they would givehim a quarter and say, Hey, go
ride the Chicago bus line allday. Like he just didn't grow up
(22:05):
with that nurturing side. And Iknew he didn't have it. And we
were kind of at this point whereI think me and my middle sister
going to make connecting thedots here. We would text each
other and be like, Dad justdoesn't have this. This is an
uphill battle. We're going tolose it. I would say my oldest
sister kept fighting it andsaying, you need to do this. You
(22:26):
need to do that. And she, forlack of better word, she was a
bulldog on it. And you know,that led to tension with her and
my father, and we went throughthis 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, shehad no idea who I was. She had
(22:46):
no idea who my kids were. Youknow, me being out of town only
there one or two days a week.
She would remember stories abouta baseball game I played in when
I was eight years old, but shecouldn't remember a conversation
I had with her three minutesprior to that. So we created it.
(23:07):
Created a dynamic of we had tobite the bullet, we had to do
what we promised we would neverdo. And, gosh, this is almost
like a psychiatry session. Inever thought about it, but it
was honestly reflecting back. Itwas 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 ourfamily, either side, to ever go
into a skilled nursing and thefeelings that come along with
that, there's guilt. JJ is incharge of carrying all the
guilt. Oh yeah, she carries thatfor everybody. But there's
guilt, because it's, it does,and it doesn't make Kristen any
less. And so you mentioned I'dsee my mom once or twice, you
(23:47):
know, once or twice, two days aweek. But you're seeing her, not
virtually. You're, you're goingback and forth. So how did you
and your siblings say we'regoing to support dad? And this
is what the schedule is going tobe like. Oldest sister takes
takes these tasks. Middle sisterdoes this. I do this piece like,
how did you all navigate thatout? And what did that look
(24:09):
like? Because you flew back andforth. That's what caught me.
About your attention. You weregoing 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 travelextensively, so I had racked up
airline points where I could doit. So yeah, I mean, I think the
way we set it up was Mary, Kateand Kelly. They would own the
week and I would own theweekends. Now the detriment was,
at this point, 2015 I had aneight year old daughter. I had a
(24:40):
six year old daughter, and I hada son that was just born. So you
talked about the burden, I thinkI'm sorry someone is calling me
on a cell phone. Is the burden Ithis put on my wife and my
family was a really big deal,and I know. My sisters feel the
(25:00):
exact same way. They missboarding events. They missed
activities at school. The normalstuff your parents do when you
step into a caregiver role thatis a priority, and that then
results in you missing a lot ofthings that I kind of look back
on it. I don't regret it, but Iam 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, sothere's always the normal guilt
that comes with that. I mean,I've traveled a lot with
positions I've been in where Itravel out of state as well, and
but I didn't have children, andso it's one thing. I think it's
one thing to miss your spouseand what that that impact of
that travel and care has on thatrelationship, but it's also
(25:42):
another the impact that has onyour children as well. What
conversation did you and yourwife have about this? Does she
get at some point like, buddy,it's tired over here. I was
tired. I would love to see youon 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 forWinston Salem,
JJ (26:04):
that's right, yeah, but that executive MBA program, I totally
understand so that I got thatthat'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. Iwouldn'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 onenight with my wife, one night
with my kids, and then Saturdaymorning, first thing, I would
fly out to be there for theweekend. And, you know, fly back
(26:35):
Sunday night, have dinner withthe family, and then it was a
rinse and repeat the exact samething, 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, andeverybody's like, okay, Ed, you
can back off a little bit. Youknow, we know that you're having
a hard time. First of all, youknow, 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 doingthis stuff, so anyone I worked
with had no idea. My friends hadno idea. But it was also the
time I actually, in my life,started getting very healthy.
Okay? It that was the point intime. It was after I finished my
MBA that I said, I don't want towake up at 5am but I'm going to
(27:26):
go to the gym every day at 5amand to this day now, I'm not six
days a week like I wasinitially, but I'm still four or
five, and that is just somethingthat, if you look at, I look at
how my parents retired, whatshould have been their best
years, and them physically nottaking care of themselves. They
are what I don't want to be,yeah. And that is the drive I
(27:48):
have every single day when Iwake 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 thatfeels so chaotic. When Jason and
I were in New York for histreatments, there were things
that I had to do that was like,I can do this thing. I can
control this. Because there'sthese times when you have no
control. And I can imagine goingand seeing the toll that it
takes on you emotionally tovisit your mom for those two
(28:26):
days her not to really recognizeyou and and how to navigate
through that, and then all theother things, navigating the
relationships with your sisters.
And how do we do this? Andwhat's this? You know, I will
say that when we had to finallymake the decision and have that
conversation with mom aboutgoing into skilled nursing, it
was, it was, we agree, it's thehardest decision you ever have
(28:47):
to make, because that's not whatyou 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 andI fought about this, did you
guys fight? Or was it a logicalconversation?
JJ (29:04):
It was, and you mentioned it, and I actually, every time I
tear up, we're like Kleenex. Youcan sponsor us. I tear up when
we talk about it still, and it'sbeen years Ed because we
promised we would never do it.
And for me, I feel like we Ifailed my dad, because it was my
responsibility to take care ofher. We went in, Emily was
taking care of her. 24/7,basically, we had tried that for
(29:24):
seven months, and we realizedthat 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 tobe 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 thatdiscussion with her, but it's
still today. She always asked mewhen I talked to her, Do you
think maybe I could go out andlive in assisted living, or I
could come out again and wecan't care for and so and every
day, it's still hard, and it is.
We finally though we have asister to make me cry. I'm
sorry. Sorry, we have a systemwhere, although we may disagree
(30:01):
about something, when a decisionis made, we go along. We make
the decision and we followthrough with it. We can't
Natalie (30:12):
argue about it. The skilled nursing wasn't actually
the argument. It was. Our momhad been in assisted living, and
she'd had three failedplacements because they felt
like they couldn't meet herneeds, otherwise known, as she
had showed her rear. And so shewas also a touch difficult I get
it honest, Emily wanted Emilyquit her job, moved from Indiana
and moved back home to care forour mom, and so we pulled her
(30:34):
back out. And that's and thereason we did that, though, is,
and then again, this is why wehave such a great relationship
with you guys is because mom wasable to get a duopa pump and but
it was only able to be given toher if she was in the home or in
a skilled nursing so shecouldn't have this magic pump in
assisted living, by regulation,but in an stupid regulation,
(30:57):
because I'm like anybody couldadmit, can clean out the flush
out the device. But Emily quither job, which is not uncommon
for caregivers, and moved inwith our mom, but then we didn't
have the support. I'm the onewho 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
(31:19):
think we want to do, and youhave 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 youdon't want them to fail. Being
right means that somebody is, Iknow it fails. So when you guys,
(31:39):
who was the one who was feltlike the holdout. And the
question would have been, forme, 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 thepromise that we all made to her,
yeah, and this is young, like wewere like, she would tell me,
Eddie, six years old, somethingever happens to me, I'm not
going like promise me, becauseshe had seen it with some of her
(32:09):
aunts and uncles. So we wethought about it. I mean, I had,
my wife is fantastic, right?
It's the fact that she let me dothis. She even allowed me to
even offer us an option for herto come live with us. Wow, but
that didn't work out. It's bigfamily Chicago. She's not
leaving Chicago. That's off thetable. You're coming to us.
(32:31):
Yeah, you guys probablyunderstand how that dynamic
works out as well. So we did. Iwould say we exhausted every
option, living with my sisters,living in none of it. We knew
none of it would work, and weprobably should have made that
decision six to nine monthsearlier. But really the impetus
was we grew up in a split level,1100 square foot home is we were
(32:55):
worried she would fall and breakher hip. Oh, yeah. And in my
head, as soon as you know you'repushing close to 80 and you
break your hip, that's not agood spot to be, that's right.
So that was, that was when wecollectively 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'mlike, oh, so we're going to take
a break, Jay, and we're going tocome
Unknown (33:23):
right back. Care forward is a technology platform
that connects volunteers withseniors, the disabled and those
with chronic or complex healthconditions, offering support
like transportation, home visitsand more details
online@careforward.io
JJ (33:38):
All right, everybody. We are back here with Ed Devaney, and
we've gotten into some toughtopics, and one of them, of
course, is making that decisionto put that loved one in a
skilled nursing facility. Andyou guys all know that's a tough
topic for me, Ed, from there,what? What happens? I know that
your mom is in really advancedAlzheimer'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 inevery weekend. It was probably
every other weekend, and I wouldmake a point to go see her and
look you're you're havingconversations with someone who
has no idea who you are, whichmade it makes it hard, but there
was glimmers of she would saythings, and I would sit there
(34:25):
and I would just laugh. I'mlike, 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 malestereotype, but I think it
happens more with males thanfemales, because we're awfully
chatty. You mentioned that youdidn't really tell your friends
about this. You didn't talk toyour friends. I mean, I know you
talked to your wife. I know yourkids saw you. You know, saw this
(34:48):
going on. But this feels veryclose, you know what? I mean,
like, very kept tight, close toyou. Because this is, in the
end, it's very it's alwayspersonal and there. And for me,
I didn't even talk. People aboutJason having cancer, except for
a small select group of peopleconsidering what I do from a
business development standpoint,like 100 of my closest friends.
(35:08):
But I mean, it was not put outthere for the world to see,
because it made me feel veryvulnerable. It made me feel like
open up for scrutiny of, Am Imaking the right decisions with
him, that sort of thing. Who didyou talk to at this point? Did
you talk to your friends aboutit? Did you talk more at work
about it? Because you've beengoing 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 infront on the other, and you go
and no matter what. So I it wasfunny. In advance of this, I
actually pulled up the eulogy Iwrote for my mom's funeral. And
I think a lot of the way Ibehaved, and I didn't really
(35:48):
recognize it until I reflectedback on the eulogy. It was all
about quit your boo hooing. I'llgive you, I'll give you a story.
My sophomore year of highschool, one of my good friends
committed suicide. I kid younot, 24 hours later, my mom is
in my ear saying, Look, life isfor the living. You have to move
on. Like that was the way sheinstilled and it was, quit your
(36:13):
boo hooing. Life is here,whether you are prepared for it
or not, and you need to go themore you think about this stuff,
the more you absorb it, theworse off you're going to be. So
just go now. I don't think theway I handled it was right.
Yeah, I probably should havetalked to it, talk to people. My
wife was really the only one Iever had a conversation with,
(36:39):
and if people in work would askme, I would do my damnedest to
make that a very shortconversation 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 namedCEO of a behavioral health
company. Jason was diagnosed atFebruary 14, and actually March
the fourth. It was confirmed onValentine's Day. Oh yeah,
nothing says Happy Valentine'sDay. Like, hey, we think, Oh,
(37:09):
wow, you don't forget, by theway. And then I was named CEO on
April 1, which seemedappropriate as well, because
that's April Fool's Day. And Ithought I could do it all. I
mean, if I'm really honest aboutI thought I'd do it all, and I
my backgrounds. People werelike, Oh, your background is so
cool. And I'm like, yeah, it'sreal. It's the background of
that's the Kristen buildingright behind me. And because I'm
(37:30):
on the 15th floor, and Jason'sgetting an infusion, and so,
wow, think about those kinds ofthings. And so my question to
you is, how to and I'm going totell you, I quit my job six
months after we got back. I wasdifferent, really? Yes, I did,
like most people would be like,I can't believe you quit your
job. You've worked to thispinnacle. You wanted to be CEO.
(37:50):
I planned on being the I plannedon retiring from intercept, and
I was so different. And so forme, it changed the complete
trajectory of my life. But Ialso tried to take my lived
experience and apply that intothe workplace. Because I knew my
privilege. I knew not manypeople moved to New York City
(38:13):
and live in Midtown, so you canget treatment at the number one
place in the in the world,basically, which is Memorial
Sloan Kettering for head andneck, sure. I just met with
them, yeah, and I'm going totell you, they are amazing, but
there is something. But I knewthat I had to do something
different for my employees. AndI had an owner, respectfully to
him, who just we weren't alignedany longer, and my experience, I
(38:38):
felt like I needed to take thatexperience and do something with
it. You know, Jay, I know thatwe'll be like, Oh my gosh, our
time is almost up, which clearlymeans 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 discussionwith your own children? Have you
placed any type of obligationson them? Or what are your
thoughts about yours and yourwife's life as you get older,
Unknown (39:22):
it's interesting the conversations I'm having with my
daughters now, so just goingback is I just dropped her off
two weeks ago at Knoxville,yeah, and the conversations I'm
having with her are reallyalmost apologetic that look, I
know I miss a lot of your life.
And that's work. That's, youknow, what I had to do for my
(39:43):
family back in Chicago. And mygoal in life is to be really
active when you have kids. Iwant to be front and center. I
don't care what it takes. I'mgoing to be there. Whether I'm
going to you, you're coming tome and. And my wife and I are
already talking about, what'snext in our life? Do we keep
this house? Do we buy a farm andhave ATVs and horses to get our
(40:05):
grandkids to come in
Natalie (40:09):
down there? We're your honorary sisters. You have no
clue. We're like, oh, we justshowed 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 theconversations we're starting to
have. So I guess to sum up, JJis, I feel a little guilt in the
family, but you know, how can Imake up for that? This past
weekend, I took my son toChicago. I do a daddy daughter
(40:36):
weekends with my individual, youknow, with grace and Chloe. So
I'm trying to find, well, Idon't have all the time in the
world. I'm trying to findmeaningful time, yeah,
purposeful one on one
JJ (40:48):
time, expectations that they will do the same. Though. Have
you ever had the discussion tosay to them, I never want to go
into a home? Or is thatsomething they know I
Unknown (40:57):
was trying to I was trying to duck that question.
Come on. I didn'trealize 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. Iunderstand, and I think it's
because of the guilt that Istill carry. Yeah, I
Natalie (41:19):
know, you know, I think, Ed, there's so many
people who don't want to havethe conversation for many
reasons, many reasons. And youknow, JJ and I were just her, I
was, we were just talking aboutit the other day. Here's a
spoiler alert. JJ and Dexterdon't have everything set up the
way they need it to, becauseDexter'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'mlike, because we don't have
kids, and I'm like, That'sright, you've got to, we got to
find other people's kids to helpus. Because, I mean, I've got to
be a good aunt. I mean, I'mtrying to woo my other nieces
and my honorary God children.
But I think that's those areimportant things to have those
discussions sooner than later,because I'm going to tell you
(42:12):
when you get cancer at 55 youdon't expect it scary. It is
scary, and I think that's whyit's so we preach it over and
over again to everybody, butjust understand it's hard. It's
not just easy. You just go anddo it, because these are hard
conversations because of ourpast experiences.
Unknown (42:32):
My wife and I, to your guys, point we just started
having these conversations. Myview on life has always been,
earn, save and invest. And nowyou hit a different point with
kids growing up. And we're wehave new life insurance, setting
up new wills. We're in thatprocess right now. And I don't
(42:54):
know what your perspective ittakes 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 aboutultimately 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 tolook forward, in the sense of
looking forward, like, and wedon't know No day is guaranteed,
but we don't. We talk aboutnever aging, but, and that's why
we're talking about, let's age.
Well, age well, looks like beingthere were three things. We were
(43:28):
at a conference last week, Edand I think you'll you guys
align with this 100% we know theimportance of how the impact of
isolation and how that impactsyour overall health and
wellness. We also food andworking out food and fitness,
and the fact, when you said, I'mnot going to not be healthy,
because they talk about yourchronological age, most people
are living to be in the US. Men,I believe, are 70, and they're
(43:53):
7074, I believe, is what it was.
And women live to be 80, andgive or take, and but their
health age is about stops atabout 65 and that just when they
start feeling more aches andpains. Because I'm telling you
right now, friend, I am feelingsome aches and pains, but I'll
(44:13):
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 oftime with it. We love him, but I
have. I had one more question,but I probably forgot it.
Natalie, well, that's this, wasit this? Was it my it's my whole
menopause brain. You don't needto know that, Ed, but anyway, so
here it is. You mentionedsomething earlier, and I want
people to know about this. Yousaid that sometimes you you felt
(44:37):
like you didn't do a great job.
And there's so many of ourlisteners that say I'm not doing
a great job. I could have donebetter. Will you just tell me a
little bit about that? The partbeing, what would you say to
somebody out there today thatsays 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. Ithought I failed my father. I
thought it was failed. Only mysisters, and it was constant. No
matter what I did in my head, itwas never enough, and I would
stay reflecting on that. I wishI would have pulled up and asked
(45:13):
for help, and it's interestinghow I lead now that is so I
probably didn't answer yourquestion, right, Natalie,
earlier, but that's probably thebiggest lesson I had from that,
and it plays out every day inwork. I asked for help all the
time. I asked for help from mywife. I asked for help from my
(45:36):
kids, my sisters. I asked forhelp with all my co workers that
hey, I'm trying to achieve a, band c. I'm stuck on this. You
know, how would you think aboutit? It? I probably wouldn't have
been open. I wouldn't have beenas vulnerable without going
through that experience and JJand Natalie. I don't know what
(45:58):
you guys think, but every day Iwas in that I felt like I was
failing. Even on my mom's theday 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 neversaw, the things I did well. I
just saw the things like Ididn't cook this meal, although
everybody who knows me knows Idon't cook, and so trust me, my
husband's a great cook. You arewelcome to come up to Virginia.
Everybody's welcome to come toVirginia. It's for lovers. But I
(46:30):
always I focused on the wrongthings, and I really you have to
find those moments where there'sglimmers where exactly when you
said you'd laugh with your mom.
That touched my heart in themoments that you said you sat by
her bedside, and she'd saysomething, there's my mom. Yeah,
there was a moment for me that Iwas like Jason and I were just
(46:50):
like everybody else, sitting onthe on the on the river. We were
looking at the river atRoosevelt 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 isreally excessive right now. It's
overwhelming. And so she callsand she wants me to fix it, and
I can't fix it, and I've calledand, you know, talk to the
doctor, but you take that withyou, you know, you go to sleep
(47:30):
at night, and I've failed that.
Why can't I get that fixed? I'veis there another piece of,
another component? You know,I'll share this with you.
There's a fantastic new medicineout 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. Ithasn't passed. And you're like,
I have to work harder. I have towork harder. I'm failing at
(47:51):
this. Why can't I figure it out?
But every I think everybodydoes. We hear that from so many
people, because I think itultimately you want to heal that
person. I think ultimately,that's where your heart is. And
if you can't heal them, thenyou've failed, and I think
that's a big part of it, but Iwill say to you, because I know
what you have done. If you wereto just look at one person, that
(48:13):
you changed, you changed us thatday, that you helped me. And I
don't want to get all teary,Monica knows. You know your
whole staff does, but youchanged our lives with helping
my mom and your mom. You You didsomething 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 didthough,
Natalie (48:37):
but you did. You did well with your mom, yeah, no
matter for you and yoursiblings, no matter all the
things that may have not gonethe way that you had hoped it
for these siblings are here tosay 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 totallyfine, because you can tell I
always talk the most. Oh yeah,my question is always fun. And I
had other questions, but I don'tcare, because this is my
favorite question. Anna wasmindful of our time, yes, so
I'll always end the show withtell me what your favorite
guilty pleasure is. What is theone thing that you do just for
you that brings you joy andmakes you smile? What's the
(49:14):
thing that you enjoy doing justfor you?
Unknown (49:16):
Um, that's a great question, and I probably have
multiple guilty pleasures, but Ilove hamburgers.
Oh, who'swhere, so this weekend, so I
actually, you watch the, gosh, Ican't Dave Portnoy, he does like
the pizza tracker. I'm not a bigpizza person, yeah, but I
monitor, like the besthamburgers. So I'll send you
(49:39):
guys a picture. We went to AUChevelle this weekend. They open
up at 10am I got first in lineat 902. To be first in and I
love a good hamburger. If youever go to Chicago, West Loop,
au cheval, it is amazing. Oh. Sothat's my guilty pleasure. I've
(50:00):
eaten every every night I've hadfish 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, thankyou so much. You're so
wonderful. You are officiallyour brother. We don't even have
brothers, but you areofficially, officially one
sisters. You have no free will.
Sorry, sorry and so but thankyou for being with us. We
appreciate you more than youknow, 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 forlistening. But before you go,
please take a moment to leave usa review and tell your friends
about the confessions podcast.
Don't forget to visit ourwebsite to sign up for our
newsletter. You'll also find thevideo recording of all of our
episodes on the confessionswebsite and our YouTube channel.
(50:58):
Don't worry. All the details areincluded in the show notes
below. We'll see you nextTuesday when we come together to
confess again. Till then, takecare of you. Okay, let's talk
disclaimers. You may besurprised to find out, but we
are not medical professionalsand are not providing any
(51:20):
medical advice. If you have anymedical questions, we recommend
that you talk with a medicalprofessional of your choice. As
always, my sisters and I, atConfessions of a reluctant
caregiver, have taken care inselecting speakers, but the
opinions of our speakers aretheirs alone. The views and
opinions stated in this podcastare solely those of the
(51:43):
contributors and not necessarilythose of our distributors or
hosting company. This podcast iscopyrighted and no part can be
reproduced without the expressedwritten consent of the
sisterhood of care LLC, thankyou for listening to The
Confessions of a reluctantcaregiver podcast.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Ruthie's Table 4
For more than 30 years The River Cafe in London, has been the home-from-home of artists, architects, designers, actors, collectors, writers, activists, and politicians. Michael Caine, Glenn Close, JJ Abrams, Steve McQueen, Victoria and David Beckham, and Lily Allen, are just some of the people who love to call The River Cafe home. On River Cafe Table 4, Rogers sits down with her customers—who have become friends—to talk about food memories. Table 4 explores how food impacts every aspect of our lives. “Foods is politics, food is cultural, food is how you express love, food is about your heritage, it defines who you and who you want to be,” says Rogers. Each week, Rogers invites her guest to reminisce about family suppers and first dates, what they cook, how they eat when performing, the restaurants they choose, and what food they seek when they need comfort. And to punctuate each episode of Table 4, guests such as Ralph Fiennes, Emily Blunt, and Alfonso Cuarón, read their favourite recipe from one of the best-selling River Cafe cookbooks. Table 4 itself, is situated near The River Cafe’s open kitchen, close to the bright pink wood-fired oven and next to the glossy yellow pass, where Ruthie oversees the restaurant. You are invited to take a seat at this intimate table and join the conversation. For more information, recipes, and ingredients, go to https://shoptherivercafe.co.uk/ Web: https://rivercafe.co.uk/ Instagram: www.instagram.com/therivercafelondon/ Facebook: https://en-gb.facebook.com/therivercafelondon/ For more podcasts from iHeartRadio, visit the iheartradio app, apple podcasts, or wherever you listen to your favorite shows. Learn more about your ad-choices at https://www.iheartpodcastnetwork.com
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.