December 11, 2024 • 45 mins
In this episode, Jason talks with Ellen Patnaude, author, coach, and dementia educator, about her journey as a caregiver for her mother with Lewy body dementia. Ellen shares her experiences navigating family dynamics, systemic gaps in elder care, and the importance of planning for the future. With honesty and humor, this conversation offers practical insights and support for anyone dealing with caregiving challenges or aging parents.
“Plan. Talk to your loved ones, an attorney, and put something in writing. Don’t leave the burden of guessing to your family.”
Ellen Patnaude has always been fascinated by how a person’s nature and lived experiences cause them to interact with others. She is a Detroit native and graduated from Alma College with a BA in Biology & French. She thought she wanted to be Jacques Cousteau, but her first few science-based jobs pointed clearly towards working with people. She worked for several years as a community organizer in Indiana and Ohio. Returning to Michigan in 2005, her reputation followed her for challenging people to see and be a better version of themselves, and the phone started ringing. Since then, Ellen has built an internationally recognized company supporting teams and their leaders in improving everyday interactions.
Ellen is the author of two books, “I Thought You Knew… Confessions of a Chronic Assumer (and How to Stop Guessing Your Way Through Important Interactions)” and “You’re Not Doing It Right: Loving My Mother Through An Unpredictable Caregiving Journey.”
https://patnaudecoaching.com/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jason Frazell (00:05):
Hey, everybody.
My guest today is a very specialguest.
By way of introduction, I wantto tell you she came to me
through dear friends of mine,longtime podcast fan and
multiple time guest MollyGrisham and Lauren Davis.
And you got to know them throughsome of the work they do with
entrepreneurs and you got tomeet them.
(00:26):
And they said, you need to talkto Ellen because she's got
something to say.
And I said, yes, please.
So my guest today is EllenPatnode.
She is a now two time author.
She's a coach.
She's a speaker.
She is a mom.
She's a wife.
She is a daughter.
And I don't usually say peopleare daughter.
I mean, we're all daughters orsons, but I say that because
(00:48):
she's also a community educatorfor dementia.
And her most recent book isabout her journey of loving and
caring for her mother in a veryunpredictable caregiving
journey, specifically aroundyour mother's journey through
dementia and Alzheimer's.
So we're gonna have a, we'regonna have a I think fairly
serious conversation about agingparents, but knowing Ellen from
(01:09):
a couple hours we spenttogether, we'll also make it
humorous because you just laugh,you'd have to laugh about it.
And I was sharing with you,sharing with Ellen, my, my
grandmother on my mom's sidealso had Alzheimer's before she
had a massive stroke, and so Igot to experience kind of the,
What that was like on thereceiving end.
And then the joy that mygrandmother experienced of
seeing us every time, like shedidn't really know who we were.
(01:30):
And so you almost have to laughabout Ellen.
I'm so glad we're here to havethis conversation and just
welcome to show.
It's so good to have you here.
Ellen Patnaude (01:37):
Thank you so much.
I'm really excited to be here.
It's a, it's, it's an honor tobe connected to people that are
mutual acquaintances that weboth think so, think so highly
of.
So that's.
It is.
Jason Frazell (01:47):
So Ellen, let's first by just kicking off and.
Other than the introduction Igave, what else do you want the
audience to know about you?
Ellen Patnaude (01:57):
Well, I think what's important to understand
about me is that I've never beenthe type of person to shy away
from, from saying things thatother people might be thinking,
but they don't think are totallyappropriate to say, or they
don't have the courage to saythem.
I tend to be the person in theroom that says them, which in
(02:17):
the work I do tends to come inhandy because clients appreciate
that outside perspective.
I also went ahead and did thatin this book that I've released
because when I was going throughthis with my mom a terrible
relationship going into it and Iwas desperately trying to find.
Something that had been writtenfrom what I would call to be
(02:38):
kind of my perspective, likewhere's the hard truth in the
middle of all of this?
And I just wasn't finding it.
I was finding a lot of stuffthat had seemed to be curated
for social media and publicconsumption, but it wasn't
making me feel any better in themidst of my struggles.
And so I wanted to see thatreflected out there.
So I tried to do that with thisnewly released book.
Jason Frazell (2) (03:01):
Yeah.
Thanks Ellen.
So, you know, we're, and youjust said that you're willing to
say the thing.
So I'm going to ask you somequestions that are going to
provide some vulnerability,which I know you're like, yes,
please.
So I love if you define for theaudience, what is a terrible
relationship with your motherlook like maybe before that?
And we don't need all thedetails, but I'd love to define
that.
So people, cause I'm sure peoplego, yeah, that sounds familiar
(03:21):
and their relationships withtheir parents.
So what does that mean?
Ellen Patnaude (03:25):
Yeah.
So for me it's, I mean, reallyfrom what my parents have told
me really as soon as I startedtalking, I started pushing back
about wanting to do it my way,do it myself.
And the, you know, my mothercame from her own background and
complicated story that causedher to navigate life with a lot
(03:46):
of fear.
So she was very controlling ofme because.
Because I was loud and wild and,you know, very fearless and
willing to do all kinds of crazythings that petrified her.
And so she lived her life with alot of fear and tried to, and I
know now she was just trying tokeep me safe, but what it ended
(04:08):
up manifesting as is thislifelong battle of who got to be
in charge of making thedecisions about how I lived my
life.
And the older I got, the morecommitted to winning that battle
I became.
And it's a battle that lastedright on up through the end of
her life.
It was not anything we were everreally able to reconcile.
(04:31):
And like I said, she had her ownchallenges and her own story
that brought her to that placethat I understand.
But living in the middle ofthat, it just looked like
Constant fighting.
I mean, we loved each otherfiercely as well, but there was
just, there was a lot offighting, a lot of arguing, you
know, one of we were bothdetermined to, to be right and
to win the fight.
(04:53):
And so it just was perpetual.
Speaker (04:55):
Yeah.
I, one of my.
Dear coach friends and mentor ofmine, she would, she has a
saying and it's common, but shesaid in coaching, but I'm sure
it's the case with, with yourmother as well as like, is this
the hill you want to die on?
And like, and like, Oh yes,every single hill I'm dying on,
I'm dying on every single hill.
It's like, and I'm sure peopleare listening to go, Oh my gosh,
there's so many hills that weall like from an ego place or
(05:19):
the, the power dynamics of like,is this really worth it?
What the outcome is.
And in the moment you're like,Oh, absolutely.
And then after you're just like,absolutely not.
And I'm speaking for myself.
And you're like, Oh boy, thatwas way more damaging than
feeling, feeling our egos, likefor five seconds.
You know, this is a coach.
Our ego is like, yes, I won.
And then you're like, but atwhat cost, but at what cost.
(05:41):
And so we're talking and soyou're saying.
And I, this is a normalexperience for most of us, I
think is your, thatrelationship, you ended up still
just being the little girl andyour mom feeling like she's
still the mom, even when you're,and you say, as you're an adult,
I don't know if you were marriedat the time you had children of
your own.
It's like, it's like, I'm agrown ass person and yet you're
(06:03):
being treated that way.
So what was that experience likefor you other than creating the
fighting?
Ellen Patnaude (06:10):
Well I mean, yes, it, it continued through
both of my marriages.
It continued through havingkids.
You know, so it was actually mywife who is the one who had the
idea that we should invite myparents to live in this carriage
house.
We, my wife and I had purchaseda farm in a rural small town
(06:31):
where her family is all settledand we were moving up there.
We were super excited about it.
We're a blended family.
So our kids at the time were.
11, 12 and 13, I believe in2016.
And and the farm had thiscarriage house and we had
planned to purchase the carriagehouse separately.
It was on its own parcel ofland.
(06:52):
The previous owners used it forrental.
And so Danny said to me, I thinkwe should offer your parents the
opportunity to live here.
In the carriage house, they'dhave their own space, but we'd
be able to help because mymother had taken a fall.
My dad had been seeing signs.
We weren't yet seeing them soclearly, but my father was, and
(07:13):
he became quite desperate at theidea that we were moving further
away and he would be on his ownto handle things.
So he had asked for our help.
And it was Danny who said, Ireally think we should offer
them the carriage house to livein.
And I said, absolutely not.
Speaker (07:30):
You're like, you're like, you're like, what?
Hold on a minute.
What?
Ellen Patnaude (07:34):
This is legitimately my worst nightmare.
And she knew knows me well.
So she let me sit with that fora little while until eventually
I came back around and said, Andand you know, it turned out she
was, it was the right thing todo for sure.
So
Jason Frazell (07:50):
about
Ellen Patnaude (07:50):
six months after we bought the farm, they moved
into that carriage house.
So we had a front row seat.
My kids had a front row seat.
They were at the dinner tablewith us pretty much every night.
And it, there was a lot offighting.
There were a lot of times myfather diplomatically would call
me and say, I think your motherand I are going to just eat at
our house this evening.
(08:13):
The fighting was particularlynasty.
So yeah, that's kind of what itlooked like.
Speaker (08:17):
Wow.
Brave.
Good job, Danny.
I think you're like, Do we haveto, you're like, what did you
just say?
What they're going to move,they're gonna move across the
street or down the road orwhatever it is.
Oh my gosh.
Yeah.
That is, that is definitelysomething I was sharing this
with you that I'm 46.
I'm, I'm starting to havefriends that are dealing with
(08:38):
aging parents or some of thesethings where they're moving
closer together without a doubtfolks that have gone off and
done their own thing and theirparents have had these like
really amazing independentlives.
And then you kind of come back.
They say it's a really surrealexperience of like the reversion
of the roles.
And that suddenly your parentsneed a lot more help from you
than you do from them.
(08:59):
Fin sometimes financially too,which is like a, you know, a
very strange thing.
So it's and, and part of in ourconversation we had offline was
the lack of resources aroundthis.
Around the support.
I have a friend who's dealingwith she literally sent me she
goes she's dealing her father's81 She's like, I don't know who
to talk to about this said Isaid that's gotta there's gotta
be things and she goes Yeah, butthey're like not that helpful
(09:23):
and Ellen and I'm you know, I'mliterally preaching to the choir
here and we're gonna talk aboutthis That's so crazy since
statistically most of us will gothrough this on both sides, both
as the caregiver and thenstatistically here in the United
States, we will be, we will beold enough that many of us will
need care from our children.
So I wanted to ask you somethingabout your kids.
(09:46):
And your parenting before wemove further, my guess is you
are hyper aware of kind of thisfamily of origin story and this
mechanism that operates insideof the family with your, with
your parents and specificallywith your mother.
What did you and your.
spouse or spouses do to addressit?
(10:09):
Or did you not?
Like, or did you start torecognize similar patterns and
have to put it, like, how didyou address it knowing like, Oh,
this was the family pattern.
And most people will tell you,you carry family patterns with
you, unless you are very, veryspecific about that.
It stops here and get a lot oftherapy, coaching, whatever the
thing is.
So how did you and your I guesslet's talk about Danny, your
(10:29):
wife.
Now, how did you all addressthat?
Ellen Patnaude (10:33):
Yeah, that's a great question.
So Danny and I have very, veryradically different stories of
origin.
And so she came to thisrelationship and we, we've been
together almost 16 years.
So our kids were two, three, andfour.
When we got, I guess, I guessthe older two actually had just
(10:53):
turned four and five when we gottogether.
And so they were pretty young.
They were, they were prettymalleable still.
And when, when we became afamily I absolutely had both
grown up and said all through mylife, I will never parent the
way that I was parented.
I don't want that kind ofrelationship with my kids.
(11:15):
Classic story for sure.
It really was incrediblydifficult to envision what a
departure from that experiencewould really look like in
practical terms until Danny cameinto my life because she had had
such a completely differentupbringing and experience and
had been part of helping raiseother kids by that point.
(11:39):
And so it really was herinfluence to be honest, she'd
probably be.
Really embarrassed to say, like,I don't deserve all the credit,
but that's just who she is.
But she gets a lot of the creditfor helping me see in practical
terms what it looks like toparent very differently.
than how I was parented.
Speaker (11:58):
Did you, did you notice, especially in heightened
emotional states, I would assumethat your kids or your stepkids,
probably some of them might havestrong personalities as well,
like you did as a child.
Did you, were you aware of someof these things coming up once
you took a step back and you'relike, oh wait, this conversation
feels familiar, except it's whatI used to have with my mom.
(12:20):
And now I'm having it with myson or my daughter.
Yeah.
So you got, but you were awareof it.
Yeah.
Yeah,
Ellen Patnaude (12:25):
I, I was, I, I have my, so my oldest child.
So the, the two that I birthedare on the bookends, right?
The youngest and the oldest, themiddle child came Danny.
And my oldest son is just likeme in so many ways.
And so, yep, we butted headshard often all the time.
(12:45):
And I mean, even through his,he's now 20, he'll be 21 this
fall.
He he still, we are very, verymuch alike.
You know, he went through someincredibly difficult experiences
himself.
And I was acutely aware that Ineeded to make sure I wasn't
closing off communication theway that my mother's parenting
style often did with me.
(13:06):
But that I wasn't going too farin the other direction and just
taking a completely hands offapproach.
So I mean, it was hard to findthat balance with the child that
is the most like me for sure.
The youngest one is my opposite.
And so and my youngest is a nonbinary child.
So that child who just turned 18that child and I, it's just,
(13:29):
it's an easier, it's just aneasier conversation most of the
time because we are oppositefrom each other.
But I mean, that has also hadits challenges.
So yeah, I mean, in real timeparenting in the midst of all of
these chaotic factors is, andthen, you know, we were in the
sort of a sandwich situation.
(13:50):
We are, you know, the kids were10, 11 and 12 and my parents are
here and I'm trying to, youknow, parent my parents and I'm
trying to raise my kids causethere's a pretty good spread
between us age wise.
So, Yeah, it was, it's all very.
Very complicated, very tricky.
Your friend is right, there arenot enough resources out there.
For sure.
So,
Speaker (14:10):
so, I want to talk about some of the assumptions
that people make who haven'tpotentially gone through this or
maybe, sometimes, like I wassaying, my, I watched, my
parents are, are not in thismode quite yet maybe never, who
knows, you know, like, medicineis going quickly and you, you
never know, but I saw them gothrough significant aging, you
know, aging support with threeof my four grandparents.
(14:33):
So a couple things, Ellen, Ithink the first question is, in
your opinion, why are there notmany resources out there that
can support folks like my friendor for you with aging parents?
And there are resources, but itseems like they're not very
either.
It's like an afterthought orsomething.
And I'm curious why you, why, inyour opinion, what's the reason
(14:57):
for that?
Ellen Patnaude (14:58):
I mean, the short answer is because it's not
sexy.
Speaker (15:02):
It's not, no, it's not sexy for sure.
Ellen Patnaude (15:04):
That's the hard truth.
I mean, we, we we put tons andtons of resources into raising
kids.
Kids are cute.
They're little, they're ourfuture.
They're bright, they're young,they're fresh faced.
Elderly people are the oppositeof all of those things.
And our culture and society doesnot value the collective wisdom
(15:28):
that the older generation has tooffer us.
And therefore, we treat themaccordingly in terms of how much
money we invest in theinfrastructure that supports
their care in the resources thatare available to the people
caring for them.
And just in terms of likegenerally what's available, I
mean, think about how oftenprograms like social security
(15:51):
and Medicare come up on thechopping block because they are
programs for the elderly andbeing elderly is not.
It doesn't have the samecultural appeal that being young
does and in a society thatvalues youth and looks
despairing disparagingly onthose that are aging.
(16:12):
I think it becomes reallyobvious why there aren't more
resources put in that direction,which is hugely unfortunate.
And I feel like a canary in thecoal mine because this is
affecting more and more and morepeople and more and more and
more of us will be caregivers,unpaid caregivers.
And it's it's a growing epidemicfor sure.
Speaker (16:32):
Yeah.
So Ellen, you mentionedsomething in there.
Do you see this, you keep sayingas, you said as a society a
couple of times, from theoutside looking at it, as
somebody who doesn't know muchabout this, it seems like this
is mostly a Western cultureissue.
Like, I think if somebody said,Hey, what do you think of this?
It seems that there arecultures, and I'm not talking
(16:56):
about governmental support, justfamily systems and structures.
There's other cultures aroundthe world that seem to do a
better job of providing supportfor the aging.
Is that, Is that correct?
Ellen Patnaude (17:10):
So I've lived abroad in a couple of places,
and I would say, I would saythis is actually very U.
S.
specific.
Speaker (17:18):
U.
S.
specific.
Okay.
Ellen Patnaude (17:20):
Yep.
I lived in Central America for aperiod of time, and you would
never, ever find, I don't eventhink, in Nicaragua, where I
spent a year.
I don't think in the town whereI lived, I'm pretty sure there
was not even such a facilitylike an assisted living or a
senior living facility.
People stay with their families.
(17:41):
They just stay with theirfamilies and multiple
generations live together andit's just part of what you do.
You take care of your old justlike you take care of your
young.
It's just what it is.
And it's a community aspect.
So if you, as the centralprovider in your family have to
go to work, the kids are atschool, but mom is having a bad
day and you really need to getto work.
(18:02):
A neighbor will step in.
Your sister will step in some,there is.
There is a much more communalapproach to how we live life.
I would say when I lived in, Ispent a semester living in
France when I was in college andthe host family that I lived
with, they had three generationsin their house.
I know that in Eastern cultureand Asian countries in
(18:24):
particular, I, but even in, inthe Middle Eastern countries
throughout Africa, other placesaround the globe, they do not
treat people this way.
They keep them with them forsure.
So I think it's.
Very US specific.
It's possibly Canada as well.
I know a handful of Canadianpeople quite well and they, they
(18:45):
talk about experiences insimilar ways to what we go
through here.
But yeah, I really think it's,it's more specific to the
northern part of this continentthan the western part.
And just thinking
Speaker (18:59):
out loud, it seems like it's a newer development as
well, because everything youjust listed, that used to be, I
don't think there was such athing as a nursing home in the
turn, you know, 120 years ago,or if there were, it was not
many of them.
You lived with your parents.
I mean, obviously lifeexpectancy has gotten, has
gotten longer.
So that does, that does have animpact and there are like higher
(19:20):
risks of, you know, like higherdiseases and things like that
too.
But I don't.
Unless I'm mistaken, I don'tthink that was a big thing that
people used to do, like go livein a, like a VA hospital to live
in a nursing home in the early20th century.
Ellen Patnaude (19:34):
Yeah.
No, I think you're totallyright.
It is a newer development forsure.
It's, it's part of how ourevolution.
So quote unquote, you know, ouradvancement as some would call
it it's the direction that we'vemoved and
Jason Frazell (19:48):
yeah,
Ellen Patnaude (19:50):
there, yeah, there's probably a million
factors that contribute to it,but I just.
Experiencing the consequences ofit means there just aren't that
many resources that areavailable to support families.
And there's a lot of isolationand this whole shame narrative
that goes along with, are youeven allowed to talk about how
much it sucks and how hard itis, that you're struggling, like
(20:12):
you're not even supposed to talkabout that stuff.
Yeah.
And that, that also limits ourability to realize that we need
more resources because too fewpeople are talking about the
deficit in those resources.
Speaker (20:27):
We're going to go now and talk a little bit, a little
bit about your experience withthis topic prior to going
through it.
Was it something you werepresent to?
Had you ever done any readingabout her?
Was it, or was this moresomething that you go, Oh shit,
this is on my doorstep.
I better get educated quickly.
Ellen Patnaude (20:48):
Well, my grandmother, my mother's mother
had Alzheimer's.
And she lived in Arizona.
She and my grandfather lived inArizona through their, from
their retirement throughpassing.
And so we would go out and visitoften.
My mother has a brother, but mymother was, she was the power of
(21:08):
attorney.
She was the executor.
She was the main one.
So I would go out there with herprobably twice a year, visiting
them, helping to take care ofthings.
And we watched my grandmother'sdecline, which Alzheimer's is
like the slow, steady downward.
Jason Frazell (21:23):
Yeah.
Ellen Patnaude (21:23):
Spiral.
And once you lose something, youdon't like, you don't, you don't
usually get it
Jason Frazell (21:29):
back.
Right.
Right.
Yeah.
Ellen Patnaude (21:31):
So I knew, I felt like I was relatively well
versed in Alzheimer's and whatthat looked like.
We saw my grandmother, shesuffered with it for more than
20 years.
Speaker (21:40):
Wow.
That's a long time to live withAlzheimer's.
Ellen Patnaude (21:43):
But it's not uncommon, honestly.
She was diagnosed in her earlyto mid seventies and she passed
away at 96.
Wow.
Wow.
Wow.
So so her journey was somethingI was very familiar with from
visiting often and helping mymom.
And honestly, that is what weall thought was the case.
We all thought my mother hadAlzheimer's when she first
(22:06):
started showing signs ofdementia and memory disruption.
And what, what a lot of people,a lot of people use those terms
synonymously interchangeablydementia and Alzheimer's.
So just the quick 10 secondoverview of it.
Dementia is like soupAlzheimer's would be chicken
noodle.
Then there's Lewy body dementia,which my mother had, which would
be like broccoli cheddar, andthen there's vascular dementia,
(22:30):
and there's frontal frontaltemporal lobe dementia.
There's all kinds of, there'slike something like 60 to 70
types of identified differentdementias at this point,
Jason Frazell (22:39):
but
Ellen Patnaude (22:40):
Alzheimer's affects about half the cases of
dementia.
That's the most common type.
Yeah.
Lewy body is in second placewith somewhere between a quarter
and a third of the rest of thecases being affected by Lewy
body.
And then the other dementiaskind of go from there.
So we thought my mother hadAlzheimer's.
(23:00):
Lewy body is a vastly differentdisease.
Road through hell, then all 10
Jason Frazell (23:06):
percent
Ellen Patnaude (23:06):
because Lewy body goes like this.
It's like being on
Jason Frazell (23:09):
a road,
Ellen Patnaude (23:12):
there's a lot of lucidity.
That's part of it.
So Danny and I go to my parentshouse and we'd have an exchange
with my mother and we'd bewalking back across the driveway
to our house.
And Danny would say to me, Iswear to God, she's faking it.
I swear to God, this is forattention.
Because that, because she wascompletely lucid on some of
those days.
Speaker (23:32):
That's hard.
Ellen Patnaude (23:34):
It was, we never knew which version of her we
were dealing with.
Jason Frazell (23:39):
Yeah,
Ellen Patnaude (23:40):
and hallucinations are the other
main hallmark of Louie body.
We had harmless hallucinationslike seeing some, you know,
animal farm animals.
We lived on a hobby farm, soseeing farm animals that weren't
really there, things like that.
But then she also wouldhallucinate that my father was a
doppelganger of himself andtrying to assault her
Jason Frazell (24:02):
or arrest
Ellen Patnaude (24:03):
her.
She would these elaboratevisions of things that were
happening that were nothappening.
But she became convinced thatwere happening and it got quite
dangerous.
Jason Frazell (24:13):
That is dangerous.
Imagine.
Ellen Patnaude (24:15):
Aggression is another lovely feature of of
Lewy body.
And so for the final six and ahalf, seven months of her life,
unfortunately we had to placeher in a facility because my
father reached his breakingpoint and was
Speaker (24:28):
actually considered unsafe potentially.
Yeah.
Just based on what you'redescribing?
Ellen Patnaude (24:32):
Yeah, absolutely.
So, you know, there's so many,I, I, I did have that exposure
and unfortunately in some waysthe exposure caused me to
overlook some of the othercharacteristics that she was
experiencing.
Because I did not know anythingabout Lewy Body.
I, but I, I'm well versed in itnow.
Speaker (24:54):
Yes, yes, and now you teach classes on it.
I told, see everybody, I toldyou we'd laugh at some point.
We just gotta laugh about it aswell.
Well, Ellen, I wanna, I wannamake sure that we cover off on
Some of the assumptions that, Ithink, I'm just gonna leave it
(25:15):
open.
What are some of the assumptionsthat live inside of this space?
And that I'm, I'm throwingeverybody who might be inside of
that.
I think you know what I'msaying.
Maybe the people that are age,or we're all aging, but people
that need help.
The people that are helping andeverything and the government,
like the states, the cities.
What are some of, some of theassumptions that, and maybe like
speak from your own experience.
(25:36):
You're like, Oh, I assume that.
When in reality, and by the way,let's, let's, let's put it out
there for the audience.
What state are you located in?
Ellen Patnaude (25:44):
I'm in Michigan.
Speaker (25:45):
You're in Michigan.
So this does depend state bystate too, depending on how the
government funds things andsuch.
I am in New York and we had somelovely news about, you know,
nursing homes during thepandemic with a former governor,
supposedly like all sorts ofthings different than this, but.
Okay.
Thank you.
We have our own, you know,version of like bad things that
happen.
I think every state has theirown version, but I just want to
(26:07):
clarify that it does dependstate by state because some
states throw a lot of moneybehind this.
I would, and some states do notas much.
So this is a state, generallysenior care is a state funded
thing for the most part is myunderstanding with some federal
dollars, but a lot of it's statefunded.
So you're in Michigan.
So yeah, what are some of theassumptions that you
Ellen Patnaude (26:29):
Well, I mean, I think starting with something we
sort of touched on already,we've, we've normalized
caregiving for children, but wehave not normalized caregiving
for older adults.
And so there are some, there aresome assumptions around like
when you're at work and you geta call from the daycare or from
(26:50):
the school, there, everybody'simmediate expectation is that,
well, of course you're going todrop everything and run, it's
your kid.
Jason Frazell (26:57):
Right.
Ellen Patnaude (26:58):
The same is not true if you are at work and you
get a call that your mother hasfallen or that there is an
emergency at the facility whereshe's living or with the
caregiver staying with her.
There is a little bit lesscompassion in my experience.
For, for needing to dropeverything and run in those
moments.
(27:19):
So
Jason Frazell (27:20):
there's a bit
Ellen Patnaude (27:20):
of a, there's a bit of a contradiction when we
say caregiving, there's, itactually applies quite broadly
to a number of things, butspecifically around aging
parents, there seems to be alittle bit less compassion.
I think one of the assumptions Imade was that I would be able to
kind of carry on my life asusual, but it wouldn't be that
time consuming.
I mean, she's an adult forcrying out loud, right?
(27:42):
Not like I got to changediapers.
Speaker (27:45):
Except you actually
Ellen Patnaude (27:46):
do I mean, let's not to be crass, but here we're
No, that's fine.
Jason Frazell (27:53):
That's fine.
Ellen Patnaude (27:53):
I mean, so, but I also just like time
consumption wise.
Right?
I did not understand how manydoctor's appointments, how many
times we would individually orcollectively have to drop
everything because my mother hadher, her favorite tote bag under
her arm and was trucking downthe road and nobody had seen her
(28:17):
leave and you better dropeverything and run because she's
going to get in traffic.
Right?
Right?
So just this assumption that wecan kind of do this.
Like we care, give for childrenas part of our daily, because,
you know, even though kids andall their complications, we know
what that's like with adultsthat are going through something
where they're affected bydementia, where there's a memory
(28:38):
disorder happening.
It's just so completelyunpredictable and you don't
expect it because we're notconditioned to have that role
reversal expectation.
Right.
Speaker (28:51):
Yeah.
I wanted to, I wanted to asksomething here about As a wife
and as a mom with children athome, what's the conversation
you would suggest people havewith carrot?
I'm just, I'm, I'm, you know,I'm a parent of two younger
children and our parents,neither of our parents do live
(29:13):
with us, but I can imagine Thatit must be strange for the kids
as well, because they're used tomom, the parents are here kind
of dependable.
And you're like, I can't go tothat game or I can't help you
with homework tonight because Iactually have to do that.
So how, how did you and yourwife address the conversations
with the children as you startedto go through this?
Ellen Patnaude (29:35):
Yeah, it's a great question.
I mean, we, we, we were moreconcerned about the types of
behavior that they werewitnessing.
And how to help them process andunderstand that.
I, fortunately, I did not haveto miss a lot of like school
(29:55):
activities.
I had a kid in band.
And another one, and both ofthem actually ran track and
cross country for a while, butmy older one was really active
with music.
So all the marching band stuffand concerts and things like
that.
My mother loved participating inthose things, loved going to be
a spectator at these events.
And so she was, I mean, theywere able to go with us for a
(30:18):
lot of nice things.
Yeah.
Doctors appointments and thingshappen during the day.
And generally the kids were atschool, but what I did have to
sit, we did have to sit down andtalk with them about where the
changes that they could seehappening with my mother.
And, you know, for example,sitting at the dining room table
our dining room overlooked thepastures and our barn out there.
(30:39):
And one of the earlyhallucinations that my mother
sat and described was like, Oh,look, the horses have found a
new area to explore.
And Danny was up from the tableand out the door, like a shot to
go like, Oh my God, we have togo chase horses.
Get the horses.
Jason Frazell (30:54):
Yeah.
Ellen Patnaude (30:55):
Nope.
It was a hallucination.
She was, she was seeingsomething that wasn't there.
It was disturbing.
It was.
It was like funny on one side,but on the other side, it was
like chills down the spine,unnerving.
To hear someone so vividlydescribe something that simply
wasn't there.
And be very convinced that weneeded to do something about it
(31:18):
immediately.
So, conversations with the kidswere more about What's happening
in grandma's brain?
How is this disease affectingher?
You know, yes, I still get madat her.
Yes, I still yell.
No, it's not, doesn't meannobody's moving away because
they'd never had a front rowseat to me and my parents living
(31:39):
together.
So, you know, for what me and myparents was normal kind of
interaction, my children and mywife were horrified.
Jason Frazell (31:48):
Yeah.
Ellen Patnaude (31:48):
We sign up for.
So it was more of theconversations around navigating
those behaviors.
And I think that's the part wedon't think about.
We do think you mentioned oflike, Oh, I got to miss the
game.
We don't think about justhelping them wrap their heads
around what's happening and whyis it happening and what does it
mean?
And am I going to catch this?
(32:09):
Am I going to catch dementia?
I remember my youngest childasking me,
Speaker (32:14):
that's heartbreaking.
Ellen Patnaude (32:15):
No, honey, you're not going to catch it, I
promise, but it's, yeah, it isheartbreaking.
I think those are the thingsreally critical that we have to
address with
Speaker (32:23):
our kids.
What about the, you mentionedsupport,
Jason Frazell (32:30):
and
Speaker (32:30):
we've talked a lot about how there isn't enough
support.
What kind of support did youfind for your children?
Other than being good parentsand being there for them, but
what other resources did youfind or things that you found
helpful?
Ellen Patnaude (32:46):
Yeah, so we we did have both of them talk to a
therapist, see a therapist.
We also, I mean, for us, for meand my dad and my wife, we
participated pretty consistentlyin an Alzheimer's association
run support group forcaregivers.
(33:06):
And part of that experience washelping caregivers learn coping
strategies, helping us talkthrough just what we were
experiencing and scratching ourheads about and feeling like we
needed help with.
And the, you know, the rest ofthe people that are in that
support group are all atdifferent stages of dealing with
different forms of dementia.
(33:27):
And it's a really incrediblecommunity that's formed.
You gotta laugh to keep fromcrying is one of the things we
say all the time in our group.
Because we would be cracking upover things that in another
context would seem really cruel.
Yeah,
Speaker (33:42):
absolutely.
Ellen Patnaude (33:43):
But yeah, going to the supports group, going to
classes, learning as much as wecould.
Just trying to see what sort ofresources were there in Michigan
every year.
I'm not sure if it's everycounty or if it's every region.
So some places more rural,there's a few counties that are
grouped in together, but theyhave an area agency on aging and
(34:05):
that is a state fundedorganization that comes out of
like community mental health andit's something that's designed
to support the aging community,but they're constantly losing
resources.
Of course.
Jason Frazell (34:17):
Yeah.
Yeah.
Ellen Patnaude (34:17):
You know, so, but in some places they have.
They at least offer likeworkshops and classes, things
like that.
But just kind of piecing ittogether where we could paying
attention, noticing if the kidsseem particularly disturbed,
making sure they got out of thehouse, that they.
That their lives stayed asnormal as possible with sports
and music and school and friendsand things like that.
(34:40):
Yeah, just trying to hang on toour collective sanity along the
way.
Speaker (34:44):
Yeah, as best you can, as best you can.
So, Ellen, as we start to wrapup wh I want to speak out now
to, again, this whole populationof folks.
We're all aging.
Some of us will, some of us willbecome your, your mom or
whatever the million things thatyou can get.
(35:05):
And you know, my, my mom, one ofher best friends got Alzheimer's
in her fifties.
So it's something, you know, notthat far away from it, that age.
It's rare, I think, but it's,it's, it happens.
What are some things that peoplecan do to prepare meaning
prepare to age and potentiallyhave this burden go on to their
(35:26):
family.
And then the other side of thatis.
For those of us who maybe aren'tquite there yet, what can we do
to prepare for the time when wewill, we will likely need to
provide additional support toour parents, like what you did.
And for those of us who don'thave spouses like Danny, who go,
Hey, we should move them in nextdoor.
Which by the way, you must havereally loved that woman because
I would have been like, Oh, hellno.
Jason Frazell (35:48):
Right?
Speaker (35:48):
Yeah.
You're like, she's like, are youfinally going to admit I'm just
right?
Just tell me, Ellen, just tellme, honey, I'm right.
But you know, on both things,how can we, how can we support
those?
Who may need to support ussomeday and the reverse, like,
how do we prepare or what can webe doing better?
And this, and anything you have,anything the government can do,
education or just things we cando ourselves.
Ellen Patnaude (36:10):
Yeah.
Well, I mean, as a coach, you'reprobably familiar with this idea
that I, I really am a big fanof.
Of encouraging people to focuson controlling what they can
control.
So, I mean, in terms of what thegovernment's going to do, I feel
like that's probably the placewe have the least amount of
control.
Although I did participate inour Alzheimer's association
(36:31):
chapter our advocacy day went toour state Capitol.
That was some lawmakers to tryto get some specific pieces of
legislation pushed through tosupport this work.
But I think on a personal level,it's, it's relatively simple
stuff.
It's not always easy, but it'srelatively simple.
I think there are a number ofthings we can do to make sure
(36:53):
we're taking care of ourselvesas caregivers and taking care of
ourselves.
Like I'm 51.
So I think about, you know, bothmy mother and my grandmother
were diagnosed with some form ofdementia in their early to mid
seventies.
I've got about 20 years to getmy shit together, which means
(37:14):
I've got 20 years of like the,you know, Mediterranean diet,
right?
Kind of healthy eating thatcontributes to health and
exercise and good socialengagement and problem solving,
et cetera.
But also, I think that anotherthing we, we never make time for
it because there's too manyother urgent fires we're trying
(37:36):
to put out.
We've got to be sitting witheither our spouse, our partner,
our kids, our, our attorney,whoever it is, do some estate
planning, do some thinking Yourassets and what you want for
yourself.
Is it the most pleasantconversation you'll have on a
random Tuesday?
No, some of it is extremelyemotional and heartbreaking, but
(37:59):
if you don't do it, you'reputting the burden of doing it
on people who are trying toguess what it is that you want.
And unfortunately.
For as much financial planningas my mother was great about
doing for my parents.
Thank God
Jason Frazell (38:13):
Yeah,
Ellen Patnaude (38:14):
she refused to accept the diagnosis Through the
bitter end to her death and sothat put us in a position of
having to guess what it was thatshe would really want for her
best self.
We just had her combative,terrified self.
That was all we had to go on.
So plan, do some thinking, talkto the people that you love,
(38:37):
talk to an attorney, putsomething in writing.
This is especially true forthose of us in the LGBTQ plus
community.
Jason Frazell (38:44):
Yeah.
Laws
Ellen Patnaude (38:45):
protect us in most places right now, but that
is not a guaranteed thing.
Jason Frazell (38:50):
That's right.
And so
Ellen Patnaude (38:51):
it's incredibly important for populations that
are not protected by law all thetime in all places to absolutely
put this stuff in writing sothat your wishes will be
respected regardless of how yourfamily members may feel about
your relationship.
Yeah.
Speaker (39:08):
So I want to.
I want to just quickly go intothat again.
I live in New York.
We have a very, obviously, it'sa blue state, very socially
friendly.
It's a democratic state, veryfriendly laws towards most of
those things.
Are there places in the countrywhere Being a member of that
community specifically and beingmarried where you see this could
(39:30):
be a problem like like you saidyou and Dan You're married.
You're married.
You're legally married It's it'slegal But there are states where
something happens or a parentpower of attorney like it's not
quite as easy as it would be fora straight For a straight couple
is what I'm hearing you say
Ellen Patnaude (39:44):
A thousand percent and it, there are
something like, I don't know theexact count as of today, but the
statistic is in the ballpark of500 pieces of legislation around
the country that are targetingLGBTQIA plus rights.
And a lot of that is aimed atthe, at the trans community, but
all of us will be affected.
(40:05):
And so, I mean, we live in sortof a purple state.
Michigan is kind of a purplestate.
It's blue the last couple ofelections, but it does go back
and forth.
And we did not have the right toget married in Michigan until it
became federally legal.
So we got married in Iowa.
We have a marriage certificatefrom Iowa from 2011.
Jason Frazell (40:28):
Yeah.
Ellen Patnaude (40:28):
And that will be honored, but what happens to the
future generations or to peoplewho are just living in
partnership, absolutely you'renot protected at all.
You are, you are completelysubject to what your family.
And if you've got a family thatruns hot and cold, that changes
depending on the day.
So put it in writing, getyourself protected.
Speaker (40:50):
I want to wrap here, Ellen.
First of all, I want to like,thanks for your vulnerability.
Just bringing this out.
I would say this is not easy totalk about, but then I'm about
to talk about your book.
So you did talk about it and abook I'm so I'm curious.
Why the book?
Why did you want to get thisstory out into the world?
Ellen Patnaude (41:08):
Yeah, thank you for asking that.
There's two reasons.
One is I think I mentioned thisearlier.
When I was going through this, Icould not find a story that
reflected my experience.
And there was this shamenarrative that developed for me
that I'm not supposed to talkabout it.
I'm not supposed to feel how I'mfeeling.
(41:29):
I'm not supposed to feel.
furious and upset and depressedand angry at the person I'm
caring for.
And I'm not supposed to feelthis stuff.
I'm supposed to be a martyr.
And I'm supposed to be filledwith endless patience.
And that just was such bullshit.
And I would not find a storythat reflected my experience.
(41:50):
So part of my motivation waswriting the book I needed to
read when I was going through itthat just shared the ugly side
of what this looks like in allof its complicated nuances.
And so a story that would makepeople like me feel less alone
was one big reason.
But the other reason honestlywas because I had, I, because I
(42:12):
had such a complicatedrelationship with my mother,
there is of course a ton ofunresolved stuff between us.
And she passed away at the endof 2020.
And two years later, I foundmyself grieving so deeply still
and feeling like I couldn'tresolve things.
Had I done my best.
You know, just second guessingand that shame narrative was
(42:36):
just so strong.
And of course now she's beengone for two years.
So why can't I just move on?
Why have I, you know, Icertainly, certainly am not
still supposed to be talkingabout it.
So I took myself away for a fewdays and realized I needed to
write the story and I wasn'tsure it was ever going But I, I
decided I needed to write thestory as a way of processing my
(42:56):
own grief
Jason Frazell (42:57):
and it
Ellen Patnaude (42:58):
has helped me more than I ever thought it
would because at the end ofevery chapter there's a section
I've called looking back nowwhere my present day self has
the benefit of time and spaceand healing to be able to look
back and say, Oh, okay, now Ireally understand why I felt
that way, why I did that thing,what, what she must've been
(43:19):
thinking or feeling.
So it's brought me closure.
in a way I didn't necessarilyexpect.
Yeah, that's
Jason Frazell (43:26):
beautiful.
Speaker (43:27):
Well, Ellen, I want to say, and I said this, just like,
thank you for putting it outthere.
It's specifically about yourmother and the Lew body
dementia, but I would imaginethat anybody who has dealt with
anything around what you justsaid, maybe having to move
parents closer, becoming aprimary caregiver for them,
they'll take a lot from thatbook.
(43:48):
I'm going to send a copy to mymom.
I'm going to tell you right now.
And, and my dad as well for, formy grandmother.
So I just want to thank you forwriting that and I want to thank
you for being on and sharingyour story with us.
I, I want to have you come backon and we're going to talk more
with Ellen.
If you're willing to come backon about some of the work now,
or maybe we'll just do a twoparter here.
(44:08):
We're talking in real time aboutthe work you do in the world now
with corporations and withfolks, you mentioned you're a
coach and you speak on a lot ofthings and how this helps
because this gives to me, I'llbet you this gives such a
perspective.
That you can then bring in tofolks that are, I'm just going
to say it out loud.
(44:28):
You're like, Oh my gosh, I havefires to put out.
I run a company.
I'm dead.
I don't have time for this.
You're like, it doesn't matter.
Like it does.
It does.
And it doesn't.
So, Ellen, thank you.
And thanks, thanks to Dani, Ihope she listens to this, for
also encouraging that and beingthe part, it sounds like she's
the partner that you needed,which is likely what you saw in
(44:49):
her.
So, Ellen, thank you so much forbeing on.
Really appreciate it.
Ellen Patnaude (44:52):
Thank you so much for having me.
It was delightful.
I look forward to part two.
Speaker (44:56):
Thanks, Ellen.
Hey, everybody.
My guest today is a very specialguest.
By way of introduction, I wantto tell you she came to me
through dear friends of mine,longtime podcast fan and
multiple time guest MollyGrisham and Lauren Davis.
And you got to know them throughsome of the work they do with
entrepreneurs and you got tomeet them.
(00:26):
And they said, you need to talkto Ellen because she's got
something to say.
And I said, yes, please.
So my guest today is EllenPatnode.
She is a now two time author.
She's a coach.
She's a speaker.
She is a mom.
She's a wife.
She is a daughter.
And I don't usually say peopleare daughter.
I mean, we're all daughters orsons, but I say that because
(00:48):
she's also a community educatorfor dementia.
And her most recent book isabout her journey of loving and
caring for her mother in a veryunpredictable caregiving
journey, specifically aroundyour mother's journey through
dementia and Alzheimer's.
So we're gonna have a, we'regonna have a I think fairly
serious conversation about agingparents, but knowing Ellen from
(01:09):
a couple hours we spenttogether, we'll also make it
humorous because you just laugh,you'd have to laugh about it.
And I was sharing with you,sharing with Ellen, my, my
grandmother on my mom's sidealso had Alzheimer's before she
had a massive stroke, and so Igot to experience kind of the,
What that was like on thereceiving end.
And then the joy that mygrandmother experienced of
seeing us every time, like shedidn't really know who we were.
(01:30):
And so you almost have to laughabout Ellen.
I'm so glad we're here to havethis conversation and just
welcome to show.
It's so good to have you here.
Ellen Patnaude (01:37):
Thank you so much.
I'm really excited to be here.
It's a, it's, it's an honor tobe connected to people that are
mutual acquaintances that weboth think so, think so highly
of.
So that's.
It is.
Jason Frazell (01:47):
So Ellen, let's first by just kicking off and.
Other than the introduction Igave, what else do you want the
audience to know about you?
Ellen Patnaude (01:57):
Well, I think what's important to understand
about me is that I've never beenthe type of person to shy away
from, from saying things thatother people might be thinking,
but they don't think are totallyappropriate to say, or they
don't have the courage to saythem.
I tend to be the person in theroom that says them, which in
(02:17):
the work I do tends to come inhandy because clients appreciate
that outside perspective.
I also went ahead and did thatin this book that I've released
because when I was going throughthis with my mom a terrible
relationship going into it and Iwas desperately trying to find.
Something that had been writtenfrom what I would call to be
(02:38):
kind of my perspective, likewhere's the hard truth in the
middle of all of this?
And I just wasn't finding it.
I was finding a lot of stuffthat had seemed to be curated
for social media and publicconsumption, but it wasn't
making me feel any better in themidst of my struggles.
And so I wanted to see thatreflected out there.
So I tried to do that with thisnewly released book.
Jason Frazell (2) (03:01):
Yeah.
Thanks Ellen.
So, you know, we're, and youjust said that you're willing to
say the thing.
So I'm going to ask you somequestions that are going to
provide some vulnerability,which I know you're like, yes,
please.
So I love if you define for theaudience, what is a terrible
relationship with your motherlook like maybe before that?
And we don't need all thedetails, but I'd love to define
that.
So people, cause I'm sure peoplego, yeah, that sounds familiar
(03:21):
and their relationships withtheir parents.
So what does that mean?
Ellen Patnaude (03:25):
Yeah.
So for me it's, I mean, reallyfrom what my parents have told
me really as soon as I startedtalking, I started pushing back
about wanting to do it my way,do it myself.
And the, you know, my mothercame from her own background and
complicated story that causedher to navigate life with a lot
(03:46):
of fear.
So she was very controlling ofme because.
Because I was loud and wild and,you know, very fearless and
willing to do all kinds of crazythings that petrified her.
And so she lived her life with alot of fear and tried to, and I
know now she was just trying tokeep me safe, but what it ended
(04:08):
up manifesting as is thislifelong battle of who got to be
in charge of making thedecisions about how I lived my
life.
And the older I got, the morecommitted to winning that battle
I became.
And it's a battle that lastedright on up through the end of
her life.
It was not anything we were everreally able to reconcile.
(04:31):
And like I said, she had her ownchallenges and her own story
that brought her to that placethat I understand.
But living in the middle ofthat, it just looked like
Constant fighting.
I mean, we loved each otherfiercely as well, but there was
just, there was a lot offighting, a lot of arguing, you
know, one of we were bothdetermined to, to be right and
to win the fight.
(04:53):
And so it just was perpetual.
Speaker (04:55):
Yeah.
I, one of my.
Dear coach friends and mentor ofmine, she would, she has a
saying and it's common, but shesaid in coaching, but I'm sure
it's the case with, with yourmother as well as like, is this
the hill you want to die on?
And like, and like, Oh yes,every single hill I'm dying on,
I'm dying on every single hill.
It's like, and I'm sure peopleare listening to go, Oh my gosh,
there's so many hills that weall like from an ego place or
(05:19):
the, the power dynamics of like,is this really worth it?
What the outcome is.
And in the moment you're like,Oh, absolutely.
And then after you're just like,absolutely not.
And I'm speaking for myself.
And you're like, Oh boy, thatwas way more damaging than
feeling, feeling our egos, likefor five seconds.
You know, this is a coach.
Our ego is like, yes, I won.
And then you're like, but atwhat cost, but at what cost.
(05:41):
And so we're talking and soyou're saying.
And I, this is a normalexperience for most of us, I
think is your, thatrelationship, you ended up still
just being the little girl andyour mom feeling like she's
still the mom, even when you're,and you say, as you're an adult,
I don't know if you were marriedat the time you had children of
your own.
It's like, it's like, I'm agrown ass person and yet you're
(06:03):
being treated that way.
So what was that experience likefor you other than creating the
fighting?
Ellen Patnaude (06:10):
Well I mean, yes, it, it continued through
both of my marriages.
It continued through havingkids.
You know, so it was actually mywife who is the one who had the
idea that we should invite myparents to live in this carriage
house.
We, my wife and I had purchaseda farm in a rural small town
(06:31):
where her family is all settledand we were moving up there.
We were super excited about it.
We're a blended family.
So our kids at the time were.
11, 12 and 13, I believe in2016.
And and the farm had thiscarriage house and we had
planned to purchase the carriagehouse separately.
It was on its own parcel ofland.
(06:52):
The previous owners used it forrental.
And so Danny said to me, I thinkwe should offer your parents the
opportunity to live here.
In the carriage house, they'dhave their own space, but we'd
be able to help because mymother had taken a fall.
My dad had been seeing signs.
We weren't yet seeing them soclearly, but my father was, and
(07:13):
he became quite desperate at theidea that we were moving further
away and he would be on his ownto handle things.
So he had asked for our help.
And it was Danny who said, Ireally think we should offer
them the carriage house to livein.
And I said, absolutely not.
Speaker (07:30):
You're like, you're like, you're like, what?
Hold on a minute.
What?
Ellen Patnaude (07:34):
This is legitimately my worst nightmare.
And she knew knows me well.
So she let me sit with that fora little while until eventually
I came back around and said, Andand you know, it turned out she
was, it was the right thing todo for sure.
So
Jason Frazell (07:50):
about
Ellen Patnaude (07:50):
six months after we bought the farm, they moved
into that carriage house.
So we had a front row seat.
My kids had a front row seat.
They were at the dinner tablewith us pretty much every night.
And it, there was a lot offighting.
There were a lot of times myfather diplomatically would call
me and say, I think your motherand I are going to just eat at
our house this evening.
(08:13):
The fighting was particularlynasty.
So yeah, that's kind of what itlooked like.
Speaker (08:17):
Wow.
Brave.
Good job, Danny.
I think you're like, Do we haveto, you're like, what did you
just say?
What they're going to move,they're gonna move across the
street or down the road orwhatever it is.
Oh my gosh.
Yeah.
That is, that is definitelysomething I was sharing this
with you that I'm 46.
I'm, I'm starting to havefriends that are dealing with
(08:38):
aging parents or some of thesethings where they're moving
closer together without a doubtfolks that have gone off and
done their own thing and theirparents have had these like
really amazing independentlives.
And then you kind of come back.
They say it's a really surrealexperience of like the reversion
of the roles.
And that suddenly your parentsneed a lot more help from you
than you do from them.
(08:59):
Fin sometimes financially too,which is like a, you know, a
very strange thing.
So it's and, and part of in ourconversation we had offline was
the lack of resources aroundthis.
Around the support.
I have a friend who's dealingwith she literally sent me she
goes she's dealing her father's81 She's like, I don't know who
to talk to about this said Isaid that's gotta there's gotta
be things and she goes Yeah, butthey're like not that helpful
(09:23):
and Ellen and I'm you know, I'mliterally preaching to the choir
here and we're gonna talk aboutthis That's so crazy since
statistically most of us will gothrough this on both sides, both
as the caregiver and thenstatistically here in the United
States, we will be, we will beold enough that many of us will
need care from our children.
So I wanted to ask you somethingabout your kids.
(09:46):
And your parenting before wemove further, my guess is you
are hyper aware of kind of thisfamily of origin story and this
mechanism that operates insideof the family with your, with
your parents and specificallywith your mother.
What did you and your.
spouse or spouses do to addressit?
(10:09):
Or did you not?
Like, or did you start torecognize similar patterns and
have to put it, like, how didyou address it knowing like, Oh,
this was the family pattern.
And most people will tell you,you carry family patterns with
you, unless you are very, veryspecific about that.
It stops here and get a lot oftherapy, coaching, whatever the
thing is.
So how did you and your I guesslet's talk about Danny, your
(10:29):
wife.
Now, how did you all addressthat?
Ellen Patnaude (10:33):
Yeah, that's a great question.
So Danny and I have very, veryradically different stories of
origin.
And so she came to thisrelationship and we, we've been
together almost 16 years.
So our kids were two, three, andfour.
When we got, I guess, I guessthe older two actually had just
(10:53):
turned four and five when we gottogether.
And so they were pretty young.
They were, they were prettymalleable still.
And when, when we became afamily I absolutely had both
grown up and said all through mylife, I will never parent the
way that I was parented.
I don't want that kind ofrelationship with my kids.
(11:15):
Classic story for sure.
It really was incrediblydifficult to envision what a
departure from that experiencewould really look like in
practical terms until Danny cameinto my life because she had had
such a completely differentupbringing and experience and
had been part of helping raiseother kids by that point.
(11:39):
And so it really was herinfluence to be honest, she'd
probably be.
Really embarrassed to say, like,I don't deserve all the credit,
but that's just who she is.
But she gets a lot of the creditfor helping me see in practical
terms what it looks like toparent very differently.
than how I was parented.
Speaker (11:58):
Did you, did you notice, especially in heightened
emotional states, I would assumethat your kids or your stepkids,
probably some of them might havestrong personalities as well,
like you did as a child.
Did you, were you aware of someof these things coming up once
you took a step back and you'relike, oh wait, this conversation
feels familiar, except it's whatI used to have with my mom.
(12:20):
And now I'm having it with myson or my daughter.
Yeah.
So you got, but you were awareof it.
Yeah.
Yeah,
Ellen Patnaude (12:25):
I, I was, I, I have my, so my oldest child.
So the, the two that I birthedare on the bookends, right?
The youngest and the oldest, themiddle child came Danny.
And my oldest son is just likeme in so many ways.
And so, yep, we butted headshard often all the time.
(12:45):
And I mean, even through his,he's now 20, he'll be 21 this
fall.
He he still, we are very, verymuch alike.
You know, he went through someincredibly difficult experiences
himself.
And I was acutely aware that Ineeded to make sure I wasn't
closing off communication theway that my mother's parenting
style often did with me.
(13:06):
But that I wasn't going too farin the other direction and just
taking a completely hands offapproach.
So I mean, it was hard to findthat balance with the child that
is the most like me for sure.
The youngest one is my opposite.
And so and my youngest is a nonbinary child.
So that child who just turned 18that child and I, it's just,
(13:29):
it's an easier, it's just aneasier conversation most of the
time because we are oppositefrom each other.
But I mean, that has also hadits challenges.
So yeah, I mean, in real timeparenting in the midst of all of
these chaotic factors is, andthen, you know, we were in the
sort of a sandwich situation.
(13:50):
We are, you know, the kids were10, 11 and 12 and my parents are
here and I'm trying to, youknow, parent my parents and I'm
trying to raise my kids causethere's a pretty good spread
between us age wise.
So, Yeah, it was, it's all very.
Very complicated, very tricky.
Your friend is right, there arenot enough resources out there.
For sure.
So,
Speaker (14:10):
so, I want to talk about some of the assumptions
that people make who haven'tpotentially gone through this or
maybe, sometimes, like I wassaying, my, I watched, my
parents are, are not in thismode quite yet maybe never, who
knows, you know, like, medicineis going quickly and you, you
never know, but I saw them gothrough significant aging, you
know, aging support with threeof my four grandparents.
(14:33):
So a couple things, Ellen, Ithink the first question is, in
your opinion, why are there notmany resources out there that
can support folks like my friendor for you with aging parents?
And there are resources, but itseems like they're not very
either.
It's like an afterthought orsomething.
And I'm curious why you, why, inyour opinion, what's the reason
(14:57):
for that?
Ellen Patnaude (14:58):
I mean, the short answer is because it's not
sexy.
Speaker (15:02):
It's not, no, it's not sexy for sure.
Ellen Patnaude (15:04):
That's the hard truth.
I mean, we, we we put tons andtons of resources into raising
kids.
Kids are cute.
They're little, they're ourfuture.
They're bright, they're young,they're fresh faced.
Elderly people are the oppositeof all of those things.
And our culture and society doesnot value the collective wisdom
(15:28):
that the older generation has tooffer us.
And therefore, we treat themaccordingly in terms of how much
money we invest in theinfrastructure that supports
their care in the resources thatare available to the people
caring for them.
And just in terms of likegenerally what's available, I
mean, think about how oftenprograms like social security
(15:51):
and Medicare come up on thechopping block because they are
programs for the elderly andbeing elderly is not.
It doesn't have the samecultural appeal that being young
does and in a society thatvalues youth and looks
despairing disparagingly onthose that are aging.
(16:12):
I think it becomes reallyobvious why there aren't more
resources put in that direction,which is hugely unfortunate.
And I feel like a canary in thecoal mine because this is
affecting more and more and morepeople and more and more and
more of us will be caregivers,unpaid caregivers.
And it's it's a growing epidemicfor sure.
Speaker (16:32):
Yeah.
So Ellen, you mentionedsomething in there.
Do you see this, you keep sayingas, you said as a society a
couple of times, from theoutside looking at it, as
somebody who doesn't know muchabout this, it seems like this
is mostly a Western cultureissue.
Like, I think if somebody said,Hey, what do you think of this?
It seems that there arecultures, and I'm not talking
(16:56):
about governmental support, justfamily systems and structures.
There's other cultures aroundthe world that seem to do a
better job of providing supportfor the aging.
Is that, Is that correct?
Ellen Patnaude (17:10):
So I've lived abroad in a couple of places,
and I would say, I would saythis is actually very U.
S.
specific.
Speaker (17:18):
U.
S.
specific.
Okay.
Ellen Patnaude (17:20):
Yep.
I lived in Central America for aperiod of time, and you would
never, ever find, I don't eventhink, in Nicaragua, where I
spent a year.
I don't think in the town whereI lived, I'm pretty sure there
was not even such a facilitylike an assisted living or a
senior living facility.
People stay with their families.
(17:41):
They just stay with theirfamilies and multiple
generations live together andit's just part of what you do.
You take care of your old justlike you take care of your
young.
It's just what it is.
And it's a community aspect.
So if you, as the centralprovider in your family have to
go to work, the kids are atschool, but mom is having a bad
day and you really need to getto work.
(18:02):
A neighbor will step in.
Your sister will step in some,there is.
There is a much more communalapproach to how we live life.
I would say when I lived in, Ispent a semester living in
France when I was in college andthe host family that I lived
with, they had three generationsin their house.
I know that in Eastern cultureand Asian countries in
(18:24):
particular, I, but even in, inthe Middle Eastern countries
throughout Africa, other placesaround the globe, they do not
treat people this way.
They keep them with them forsure.
So I think it's.
Very US specific.
It's possibly Canada as well.
I know a handful of Canadianpeople quite well and they, they
(18:45):
talk about experiences insimilar ways to what we go
through here.
But yeah, I really think it's,it's more specific to the
northern part of this continentthan the western part.
And just thinking
Speaker (18:59):
out loud, it seems like it's a newer development as
well, because everything youjust listed, that used to be, I
don't think there was such athing as a nursing home in the
turn, you know, 120 years ago,or if there were, it was not
many of them.
You lived with your parents.
I mean, obviously lifeexpectancy has gotten, has
gotten longer.
So that does, that does have animpact and there are like higher
(19:20):
risks of, you know, like higherdiseases and things like that
too.
But I don't.
Unless I'm mistaken, I don'tthink that was a big thing that
people used to do, like go livein a, like a VA hospital to live
in a nursing home in the early20th century.
Ellen Patnaude (19:34):
Yeah.
No, I think you're totallyright.
It is a newer development forsure.
It's, it's part of how ourevolution.
So quote unquote, you know, ouradvancement as some would call
it it's the direction that we'vemoved and
Jason Frazell (19:48):
yeah,
Ellen Patnaude (19:50):
there, yeah, there's probably a million
factors that contribute to it,but I just.
Experiencing the consequences ofit means there just aren't that
many resources that areavailable to support families.
And there's a lot of isolationand this whole shame narrative
that goes along with, are youeven allowed to talk about how
much it sucks and how hard itis, that you're struggling, like
(20:12):
you're not even supposed to talkabout that stuff.
Yeah.
And that, that also limits ourability to realize that we need
more resources because too fewpeople are talking about the
deficit in those resources.
Speaker (20:27):
We're going to go now and talk a little bit, a little
bit about your experience withthis topic prior to going
through it.
Was it something you werepresent to?
Had you ever done any readingabout her?
Was it, or was this moresomething that you go, Oh shit,
this is on my doorstep.
I better get educated quickly.
Ellen Patnaude (20:48):
Well, my grandmother, my mother's mother
had Alzheimer's.
And she lived in Arizona.
She and my grandfather lived inArizona through their, from
their retirement throughpassing.
And so we would go out and visitoften.
My mother has a brother, but mymother was, she was the power of
(21:08):
attorney.
She was the executor.
She was the main one.
So I would go out there with herprobably twice a year, visiting
them, helping to take care ofthings.
And we watched my grandmother'sdecline, which Alzheimer's is
like the slow, steady downward.
Jason Frazell (21:23):
Yeah.
Ellen Patnaude (21:23):
Spiral.
And once you lose something, youdon't like, you don't, you don't
usually get it
Jason Frazell (21:29):
back.
Right.
Right.
Yeah.
Ellen Patnaude (21:31):
So I knew, I felt like I was relatively well
versed in Alzheimer's and whatthat looked like.
We saw my grandmother, shesuffered with it for more than
20 years.
Speaker (21:40):
Wow.
That's a long time to live withAlzheimer's.
Ellen Patnaude (21:43):
But it's not uncommon, honestly.
She was diagnosed in her earlyto mid seventies and she passed
away at 96.
Wow.
Wow.
Wow.
So so her journey was somethingI was very familiar with from
visiting often and helping mymom.
And honestly, that is what weall thought was the case.
We all thought my mother hadAlzheimer's when she first
(22:06):
started showing signs ofdementia and memory disruption.
And what, what a lot of people,a lot of people use those terms
synonymously interchangeablydementia and Alzheimer's.
So just the quick 10 secondoverview of it.
Dementia is like soupAlzheimer's would be chicken
noodle.
Then there's Lewy body dementia,which my mother had, which would
be like broccoli cheddar, andthen there's vascular dementia,
(22:30):
and there's frontal frontaltemporal lobe dementia.
There's all kinds of, there'slike something like 60 to 70
types of identified differentdementias at this point,
Jason Frazell (22:39):
but
Ellen Patnaude (22:40):
Alzheimer's affects about half the cases of
dementia.
That's the most common type.
Yeah.
Lewy body is in second placewith somewhere between a quarter
and a third of the rest of thecases being affected by Lewy
body.
And then the other dementiaskind of go from there.
So we thought my mother hadAlzheimer's.
(23:00):
Lewy body is a vastly differentdisease.
Road through hell, then all 10
Jason Frazell (23:06):
percent
Ellen Patnaude (23:06):
because Lewy body goes like this.
It's like being on
Jason Frazell (23:09):
a road,
Ellen Patnaude (23:12):
there's a lot of lucidity.
That's part of it.
So Danny and I go to my parentshouse and we'd have an exchange
with my mother and we'd bewalking back across the driveway
to our house.
And Danny would say to me, Iswear to God, she's faking it.
I swear to God, this is forattention.
Because that, because she wascompletely lucid on some of
those days.
Speaker (23:32):
That's hard.
Ellen Patnaude (23:34):
It was, we never knew which version of her we
were dealing with.
Jason Frazell (23:39):
Yeah,
Ellen Patnaude (23:40):
and hallucinations are the other
main hallmark of Louie body.
We had harmless hallucinationslike seeing some, you know,
animal farm animals.
We lived on a hobby farm, soseeing farm animals that weren't
really there, things like that.
But then she also wouldhallucinate that my father was a
doppelganger of himself andtrying to assault her
Jason Frazell (24:02):
or arrest
Ellen Patnaude (24:03):
her.
She would these elaboratevisions of things that were
happening that were nothappening.
But she became convinced thatwere happening and it got quite
dangerous.
Jason Frazell (24:13):
That is dangerous.
Imagine.
Ellen Patnaude (24:15):
Aggression is another lovely feature of of
Lewy body.
And so for the final six and ahalf, seven months of her life,
unfortunately we had to placeher in a facility because my
father reached his breakingpoint and was
Speaker (24:28):
actually considered unsafe potentially.
Yeah.
Just based on what you'redescribing?
Ellen Patnaude (24:32):
Yeah, absolutely.
So, you know, there's so many,I, I, I did have that exposure
and unfortunately in some waysthe exposure caused me to
overlook some of the othercharacteristics that she was
experiencing.
Because I did not know anythingabout Lewy Body.
I, but I, I'm well versed in itnow.
Speaker (24:54):
Yes, yes, and now you teach classes on it.
I told, see everybody, I toldyou we'd laugh at some point.
We just gotta laugh about it aswell.
Well, Ellen, I wanna, I wannamake sure that we cover off on
Some of the assumptions that, Ithink, I'm just gonna leave it
(25:15):
open.
What are some of the assumptionsthat live inside of this space?
And that I'm, I'm throwingeverybody who might be inside of
that.
I think you know what I'msaying.
Maybe the people that are age,or we're all aging, but people
that need help.
The people that are helping andeverything and the government,
like the states, the cities.
What are some of, some of theassumptions that, and maybe like
speak from your own experience.
(25:36):
You're like, Oh, I assume that.
When in reality, and by the way,let's, let's, let's put it out
there for the audience.
What state are you located in?
Ellen Patnaude (25:44):
I'm in Michigan.
Speaker (25:45):
You're in Michigan.
So this does depend state bystate too, depending on how the
government funds things andsuch.
I am in New York and we had somelovely news about, you know,
nursing homes during thepandemic with a former governor,
supposedly like all sorts ofthings different than this, but.
Okay.
Thank you.
We have our own, you know,version of like bad things that
happen.
I think every state has theirown version, but I just want to
(26:07):
clarify that it does dependstate by state because some
states throw a lot of moneybehind this.
I would, and some states do notas much.
So this is a state, generallysenior care is a state funded
thing for the most part is myunderstanding with some federal
dollars, but a lot of it's statefunded.
So you're in Michigan.
So yeah, what are some of theassumptions that you
Ellen Patnaude (26:29):
Well, I mean, I think starting with something we
sort of touched on already,we've, we've normalized
caregiving for children, but wehave not normalized caregiving
for older adults.
And so there are some, there aresome assumptions around like
when you're at work and you geta call from the daycare or from
(26:50):
the school, there, everybody'simmediate expectation is that,
well, of course you're going todrop everything and run, it's
your kid.
Jason Frazell (26:57):
Right.
Ellen Patnaude (26:58):
The same is not true if you are at work and you
get a call that your mother hasfallen or that there is an
emergency at the facility whereshe's living or with the
caregiver staying with her.
There is a little bit lesscompassion in my experience.
For, for needing to dropeverything and run in those
moments.
(27:19):
So
Jason Frazell (27:20):
there's a bit
Ellen Patnaude (27:20):
of a, there's a bit of a contradiction when we
say caregiving, there's, itactually applies quite broadly
to a number of things, butspecifically around aging
parents, there seems to be alittle bit less compassion.
I think one of the assumptions Imade was that I would be able to
kind of carry on my life asusual, but it wouldn't be that
time consuming.
I mean, she's an adult forcrying out loud, right?
(27:42):
Not like I got to changediapers.
Speaker (27:45):
Except you actually
Ellen Patnaude (27:46):
do I mean, let's not to be crass, but here we're
No, that's fine.
Jason Frazell (27:53):
That's fine.
Ellen Patnaude (27:53):
I mean, so, but I also just like time
consumption wise.
Right?
I did not understand how manydoctor's appointments, how many
times we would individually orcollectively have to drop
everything because my mother hadher, her favorite tote bag under
her arm and was trucking downthe road and nobody had seen her
(28:17):
leave and you better dropeverything and run because she's
going to get in traffic.
Right?
Right?
So just this assumption that wecan kind of do this.
Like we care, give for childrenas part of our daily, because,
you know, even though kids andall their complications, we know
what that's like with adultsthat are going through something
where they're affected bydementia, where there's a memory
(28:38):
disorder happening.
It's just so completelyunpredictable and you don't
expect it because we're notconditioned to have that role
reversal expectation.
Right.
Speaker (28:51):
Yeah.
I wanted to, I wanted to asksomething here about As a wife
and as a mom with children athome, what's the conversation
you would suggest people havewith carrot?
I'm just, I'm, I'm, you know,I'm a parent of two younger
children and our parents,neither of our parents do live
(29:13):
with us, but I can imagine Thatit must be strange for the kids
as well, because they're used tomom, the parents are here kind
of dependable.
And you're like, I can't go tothat game or I can't help you
with homework tonight because Iactually have to do that.
So how, how did you and yourwife address the conversations
with the children as you startedto go through this?
Ellen Patnaude (29:35):
Yeah, it's a great question.
I mean, we, we, we were moreconcerned about the types of
behavior that they werewitnessing.
And how to help them process andunderstand that.
I, fortunately, I did not haveto miss a lot of like school
(29:55):
activities.
I had a kid in band.
And another one, and both ofthem actually ran track and
cross country for a while, butmy older one was really active
with music.
So all the marching band stuffand concerts and things like
that.
My mother loved participating inthose things, loved going to be
a spectator at these events.
And so she was, I mean, theywere able to go with us for a
(30:18):
lot of nice things.
Yeah.
Doctors appointments and thingshappen during the day.
And generally the kids were atschool, but what I did have to
sit, we did have to sit down andtalk with them about where the
changes that they could seehappening with my mother.
And, you know, for example,sitting at the dining room table
our dining room overlooked thepastures and our barn out there.
(30:39):
And one of the earlyhallucinations that my mother
sat and described was like, Oh,look, the horses have found a
new area to explore.
And Danny was up from the tableand out the door, like a shot to
go like, Oh my God, we have togo chase horses.
Get the horses.
Jason Frazell (30:54):
Yeah.
Ellen Patnaude (30:55):
Nope.
It was a hallucination.
She was, she was seeingsomething that wasn't there.
It was disturbing.
It was.
It was like funny on one side,but on the other side, it was
like chills down the spine,unnerving.
To hear someone so vividlydescribe something that simply
wasn't there.
And be very convinced that weneeded to do something about it
(31:18):
immediately.
So, conversations with the kidswere more about What's happening
in grandma's brain?
How is this disease affectingher?
You know, yes, I still get madat her.
Yes, I still yell.
No, it's not, doesn't meannobody's moving away because
they'd never had a front rowseat to me and my parents living
(31:39):
together.
So, you know, for what me and myparents was normal kind of
interaction, my children and mywife were horrified.
Jason Frazell (31:48):
Yeah.
Ellen Patnaude (31:48):
We sign up for.
So it was more of theconversations around navigating
those behaviors.
And I think that's the part wedon't think about.
We do think you mentioned oflike, Oh, I got to miss the
game.
We don't think about justhelping them wrap their heads
around what's happening and whyis it happening and what does it
mean?
And am I going to catch this?
(32:09):
Am I going to catch dementia?
I remember my youngest childasking me,
Speaker (32:14):
that's heartbreaking.
Ellen Patnaude (32:15):
No, honey, you're not going to catch it, I
promise, but it's, yeah, it isheartbreaking.
I think those are the thingsreally critical that we have to
address with
Speaker (32:23):
our kids.
What about the, you mentionedsupport,
Jason Frazell (32:30):
and
Speaker (32:30):
we've talked a lot about how there isn't enough
support.
What kind of support did youfind for your children?
Other than being good parentsand being there for them, but
what other resources did youfind or things that you found
helpful?
Ellen Patnaude (32:46):
Yeah, so we we did have both of them talk to a
therapist, see a therapist.
We also, I mean, for us, for meand my dad and my wife, we
participated pretty consistentlyin an Alzheimer's association
run support group forcaregivers.
(33:06):
And part of that experience washelping caregivers learn coping
strategies, helping us talkthrough just what we were
experiencing and scratching ourheads about and feeling like we
needed help with.
And the, you know, the rest ofthe people that are in that
support group are all atdifferent stages of dealing with
different forms of dementia.
(33:27):
And it's a really incrediblecommunity that's formed.
You gotta laugh to keep fromcrying is one of the things we
say all the time in our group.
Because we would be cracking upover things that in another
context would seem really cruel.
Yeah,
Speaker (33:42):
absolutely.
Ellen Patnaude (33:43):
But yeah, going to the supports group, going to
classes, learning as much as wecould.
Just trying to see what sort ofresources were there in Michigan
every year.
I'm not sure if it's everycounty or if it's every region.
So some places more rural,there's a few counties that are
grouped in together, but theyhave an area agency on aging and
(34:05):
that is a state fundedorganization that comes out of
like community mental health andit's something that's designed
to support the aging community,but they're constantly losing
resources.
Of course.
Jason Frazell (34:17):
Yeah.
Yeah.
Ellen Patnaude (34:17):
You know, so, but in some places they have.
They at least offer likeworkshops and classes, things
like that.
But just kind of piecing ittogether where we could paying
attention, noticing if the kidsseem particularly disturbed,
making sure they got out of thehouse, that they.
That their lives stayed asnormal as possible with sports
and music and school and friendsand things like that.
(34:40):
Yeah, just trying to hang on toour collective sanity along the
way.
Speaker (34:44):
Yeah, as best you can, as best you can.
So, Ellen, as we start to wrapup wh I want to speak out now
to, again, this whole populationof folks.
We're all aging.
Some of us will, some of us willbecome your, your mom or
whatever the million things thatyou can get.
(35:05):
And you know, my, my mom, one ofher best friends got Alzheimer's
in her fifties.
So it's something, you know, notthat far away from it, that age.
It's rare, I think, but it's,it's, it happens.
What are some things that peoplecan do to prepare meaning
prepare to age and potentiallyhave this burden go on to their
(35:26):
family.
And then the other side of thatis.
For those of us who maybe aren'tquite there yet, what can we do
to prepare for the time when wewill, we will likely need to
provide additional support toour parents, like what you did.
And for those of us who don'thave spouses like Danny, who go,
Hey, we should move them in nextdoor.
Which by the way, you must havereally loved that woman because
I would have been like, Oh, hellno.
Jason Frazell (35:48):
Right?
Speaker (35:48):
Yeah.
You're like, she's like, are youfinally going to admit I'm just
right?
Just tell me, Ellen, just tellme, honey, I'm right.
But you know, on both things,how can we, how can we support
those?
Who may need to support ussomeday and the reverse, like,
how do we prepare or what can webe doing better?
And this, and anything you have,anything the government can do,
education or just things we cando ourselves.
Ellen Patnaude (36:10):
Yeah.
Well, I mean, as a coach, you'reprobably familiar with this idea
that I, I really am a big fanof.
Of encouraging people to focuson controlling what they can
control.
So, I mean, in terms of what thegovernment's going to do, I feel
like that's probably the placewe have the least amount of
control.
Although I did participate inour Alzheimer's association
(36:31):
chapter our advocacy day went toour state Capitol.
That was some lawmakers to tryto get some specific pieces of
legislation pushed through tosupport this work.
But I think on a personal level,it's, it's relatively simple
stuff.
It's not always easy, but it'srelatively simple.
I think there are a number ofthings we can do to make sure
(36:53):
we're taking care of ourselvesas caregivers and taking care of
ourselves.
Like I'm 51.
So I think about, you know, bothmy mother and my grandmother
were diagnosed with some form ofdementia in their early to mid
seventies.
I've got about 20 years to getmy shit together, which means
(37:14):
I've got 20 years of like the,you know, Mediterranean diet,
right?
Kind of healthy eating thatcontributes to health and
exercise and good socialengagement and problem solving,
et cetera.
But also, I think that anotherthing we, we never make time for
it because there's too manyother urgent fires we're trying
(37:36):
to put out.
We've got to be sitting witheither our spouse, our partner,
our kids, our, our attorney,whoever it is, do some estate
planning, do some thinking Yourassets and what you want for
yourself.
Is it the most pleasantconversation you'll have on a
random Tuesday?
No, some of it is extremelyemotional and heartbreaking, but
(37:59):
if you don't do it, you'reputting the burden of doing it
on people who are trying toguess what it is that you want.
And unfortunately.
For as much financial planningas my mother was great about
doing for my parents.
Thank God
Jason Frazell (38:13):
Yeah,
Ellen Patnaude (38:14):
she refused to accept the diagnosis Through the
bitter end to her death and sothat put us in a position of
having to guess what it was thatshe would really want for her
best self.
We just had her combative,terrified self.
That was all we had to go on.
So plan, do some thinking, talkto the people that you love,
(38:37):
talk to an attorney, putsomething in writing.
This is especially true forthose of us in the LGBTQ plus
community.
Jason Frazell (38:44):
Yeah.
Laws
Ellen Patnaude (38:45):
protect us in most places right now, but that
is not a guaranteed thing.
Jason Frazell (38:50):
That's right.
And so
Ellen Patnaude (38:51):
it's incredibly important for populations that
are not protected by law all thetime in all places to absolutely
put this stuff in writing sothat your wishes will be
respected regardless of how yourfamily members may feel about
your relationship.
Yeah.
Speaker (39:08):
So I want to.
I want to just quickly go intothat again.
I live in New York.
We have a very, obviously, it'sa blue state, very socially
friendly.
It's a democratic state, veryfriendly laws towards most of
those things.
Are there places in the countrywhere Being a member of that
community specifically and beingmarried where you see this could
(39:30):
be a problem like like you saidyou and Dan You're married.
You're married.
You're legally married It's it'slegal But there are states where
something happens or a parentpower of attorney like it's not
quite as easy as it would be fora straight For a straight couple
is what I'm hearing you say
Ellen Patnaude (39:44):
A thousand percent and it, there are
something like, I don't know theexact count as of today, but the
statistic is in the ballpark of500 pieces of legislation around
the country that are targetingLGBTQIA plus rights.
And a lot of that is aimed atthe, at the trans community, but
all of us will be affected.
(40:05):
And so, I mean, we live in sortof a purple state.
Michigan is kind of a purplestate.
It's blue the last couple ofelections, but it does go back
and forth.
And we did not have the right toget married in Michigan until it
became federally legal.
So we got married in Iowa.
We have a marriage certificatefrom Iowa from 2011.
Jason Frazell (40:28):
Yeah.
Ellen Patnaude (40:28):
And that will be honored, but what happens to the
future generations or to peoplewho are just living in
partnership, absolutely you'renot protected at all.
You are, you are completelysubject to what your family.
And if you've got a family thatruns hot and cold, that changes
depending on the day.
So put it in writing, getyourself protected.
Speaker (40:50):
I want to wrap here, Ellen.
First of all, I want to like,thanks for your vulnerability.
Just bringing this out.
I would say this is not easy totalk about, but then I'm about
to talk about your book.
So you did talk about it and abook I'm so I'm curious.
Why the book?
Why did you want to get thisstory out into the world?
Ellen Patnaude (41:08):
Yeah, thank you for asking that.
There's two reasons.
One is I think I mentioned thisearlier.
When I was going through this, Icould not find a story that
reflected my experience.
And there was this shamenarrative that developed for me
that I'm not supposed to talkabout it.
I'm not supposed to feel how I'mfeeling.
(41:29):
I'm not supposed to feel.
furious and upset and depressedand angry at the person I'm
caring for.
And I'm not supposed to feelthis stuff.
I'm supposed to be a martyr.
And I'm supposed to be filledwith endless patience.
And that just was such bullshit.
And I would not find a storythat reflected my experience.
(41:50):
So part of my motivation waswriting the book I needed to
read when I was going through itthat just shared the ugly side
of what this looks like in allof its complicated nuances.
And so a story that would makepeople like me feel less alone
was one big reason.
But the other reason honestlywas because I had, I, because I
(42:12):
had such a complicatedrelationship with my mother,
there is of course a ton ofunresolved stuff between us.
And she passed away at the endof 2020.
And two years later, I foundmyself grieving so deeply still
and feeling like I couldn'tresolve things.
Had I done my best.
You know, just second guessingand that shame narrative was
(42:36):
just so strong.
And of course now she's beengone for two years.
So why can't I just move on?
Why have I, you know, Icertainly, certainly am not
still supposed to be talkingabout it.
So I took myself away for a fewdays and realized I needed to
write the story and I wasn'tsure it was ever going But I, I
decided I needed to write thestory as a way of processing my
(42:56):
own grief
Jason Frazell (42:57):
and it
Ellen Patnaude (42:58):
has helped me more than I ever thought it
would because at the end ofevery chapter there's a section
I've called looking back nowwhere my present day self has
the benefit of time and spaceand healing to be able to look
back and say, Oh, okay, now Ireally understand why I felt
that way, why I did that thing,what, what she must've been
(43:19):
thinking or feeling.
So it's brought me closure.
in a way I didn't necessarilyexpect.
Yeah, that's
Jason Frazell (43:26):
beautiful.
Speaker (43:27):
Well, Ellen, I want to say, and I said this, just like,
thank you for putting it outthere.
It's specifically about yourmother and the Lew body
dementia, but I would imaginethat anybody who has dealt with
anything around what you justsaid, maybe having to move
parents closer, becoming aprimary caregiver for them,
they'll take a lot from thatbook.
(43:48):
I'm going to send a copy to mymom.
I'm going to tell you right now.
And, and my dad as well for, formy grandmother.
So I just want to thank you forwriting that and I want to thank
you for being on and sharingyour story with us.
I, I want to have you come backon and we're going to talk more
with Ellen.
If you're willing to come backon about some of the work now,
or maybe we'll just do a twoparter here.
(44:08):
We're talking in real time aboutthe work you do in the world now
with corporations and withfolks, you mentioned you're a
coach and you speak on a lot ofthings and how this helps
because this gives to me, I'llbet you this gives such a
perspective.
That you can then bring in tofolks that are, I'm just going
to say it out loud.
(44:28):
You're like, Oh my gosh, I havefires to put out.
I run a company.
I'm dead.
I don't have time for this.
You're like, it doesn't matter.
Like it does.
It does.
And it doesn't.
So, Ellen, thank you.
And thanks, thanks to Dani, Ihope she listens to this, for
also encouraging that and beingthe part, it sounds like she's
the partner that you needed,which is likely what you saw in
(44:49):
her.
So, Ellen, thank you so much forbeing on.
Really appreciate it.
Ellen Patnaude (44:52):
Thank you so much for having me.
It was delightful.
I look forward to part two.
Speaker (44:56):
Thanks, Ellen.
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