MARTIN J. SCHREIBER: My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver

What better way to celebrate our 100th episode than with an interview that truly reflects the definition and the title of our show: Love Conquers Alz. Former Wisconsin Gov. Martin J. Schreiber is an award-winning crusader for Alzheimer's caregivers and persons with dementia and author of the best selling novel, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver.

Since 2016, Marty has been campaigning unlike anything he experienced while in office. Rather than seeking votes, Marty now works to recognize and support Alzheimer’s caregivers – an unpaid workforce that now exceeds 16 million people nationwide. Schreiber's goal for caregivers (whom he calls heroes) is that they learn, cope, survive and even thrive during their difficult journey. All things that Marty learned caring for his beloved wife, Elaine.

Imagine your spouse falling in love with you over and over again. Romantic, right?  But what if they kept falling in love with you because every morning they woke up they’d forget who you were?  The love story of Marty and his wife Elaine that began in the 1950s when they were high school freshmen began to take the cruelest of twists when Elaine, diagnosed with Alzheimer's, gradually transformed from the woman who had gracefully entertained in the Executive Residence to one who sometimes no longer recognized Marty as her husband.  Yet, the two still found moments of joy which Marty lovingly talks about in his acclaimed My Two Elaines.

We share insights from "My Two Elaines," a poignant memoir that highlights the emotional journey from partner to caregiver, offering practical advice on therapeutic fibbing and redirection. The episode underscores the importance of male caregivers seeking help and stepping away from outdated stereotypes, as we discuss the necessity of systemic reform in care facilities.

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Episode Transcript

Speaker 1 (00:00):
Hi, this is Don Priest, co-host of Love Conquers
Alls.
Welcome to Season 10, episode100.
On behalf of Susie and I, we'dlike to thank all of our amazing
guests and for everyone whowatches, listens and supports
Love Conquers Alls.
Alzheimer's sucks.
It's an equal opportunitydisease that chips away at

(00:23):
everything we hold dear, and todate there's no cure.
So until there is, we continueto fight with the most powerful
tool in our arsenal Love.
This is Love Conquers Alls, areal and really positive podcast
that takes a deep dive intoeverything Alzheimer's the good,
the bad and everything inbetween.

(00:45):
And now here are your hosts,suzy Singer-Carter and me, don
Preece.

Speaker 3 (00:55):
Hello everybody, I am Suzy Singer-Carter.

Speaker 1 (00:58):
And I'm Don Preece, and this is Love Conquers Alls.
Hello, susan.

Speaker 3 (01:03):
Hi Donald, how are you?

Speaker 1 (01:05):
I'm swell and yourself.

Speaker 3 (01:07):
Good, I'm good.

Speaker 1 (01:14):
I'm excellent Susie.
If you don't know Susie, she isknown for many things, but one
of the things she's known for isher wearing of hats.
She is a chapeau master.
She has a different hat everyday, and today she has a hat
that is new.
And why don't you?
Why don't you explain to uswhat that hat is?
well, I'm very proud of this hatbecause it's it says here don
read it for me because it'sbackwards, it's it says roar and

(01:37):
that's r-o-a-r, and that isthat stands for respect,
outreach, advocacy, and Advocacyand Reform for Nursing Homes.
And now that I've read that toyou, why don't you explain why
you're wearing that hat?

Speaker 3 (01:52):
I will.
I'm going to do that.
So ROAR is really the name ofour grassroots movement that
goes along with our documentaryno Country for Old People.
And we've just decided thatthis is the name of our movement
and we feel like it's veryproactive and energetic because

(02:13):
we're roaring for change, we'reroaring for reform in the
nursing homes and we have aninterview later on about the
documentary.
So I had this hat made upyesterday with our new logo and
I'm very proud of it, and one ofour media experts, who we were

(02:37):
just talking to, thought it wasgreat, so we feel good about it.
Right, don?
Yes?

Speaker 1 (02:42):
absolutely.
And yeah, I mean, we've beenbanting about names for months
now and this one just feelsright because it really is
saying what we have to do as acollective, and that is to use
our voices and make a loud sound.
So good on us.

Speaker 3 (03:00):
So, yeah, good on everybody.
And if you're interested inbeing a part of ROAR and roaring
along with us like tigers, thenplease go to our website for
the documentary, which isNoCountryForOldPeoplecom, and
there is a movement tab that youcan go to and sign up to be a
part of it, because we need morehelp than we can imagine on

(03:23):
this, especially now in ourpolitical climate.
It's really there's no bettertime than now to really coalesce
and make change, and it'simportant because our, our
voices as the, as a public, as acollective, actually it's very

(03:43):
powerful and we can make change.
Change and it's been.
You know, part of our part ofour history is is making change.
That starts with just a fewpeople, so come on and join us.

Speaker 1 (03:58):
Right, absolutely.

Speaker 3 (04:01):
Yeah, so what else is new?
Let's talk about something fun.

Speaker 1 (04:05):
Oh well, you.
This last weekend you have somelittle grandkids who got to do
something for the first time.
Yes, and yeah, we went toDisneyland.

Speaker 3 (04:20):
Yeah.

Speaker 1 (04:24):
And that was great.

Speaker 3 (04:25):
It was actually a really great day it was a really
great day, but can we talkabout the price of Disneyland
now?
What?

Speaker 4 (04:31):
on earth.

Speaker 1 (04:31):
I'd rather not the happiest place on earth is the
most expensive place on earthnow.
Oh my gosh, it's insane.

Speaker 3 (04:39):
I mean it's $200 a ticket folks and that's not
including to walk through thegates.
A bottle of water is $9 andeverything else is up more than
that.

Speaker 1 (04:50):
Parking $35.
It's the most expensive place.

Speaker 3 (04:53):
Yeah, it's the most expensive place on earth and yet
it's crowded to the gills,which says something about I
don't know.
What does it say?
I have no idea.

Speaker 1 (05:14):
It say I have no idea .
It says all I know is thatpeople don't care about how much
people don't like disneyland.
Despite that, it was a greattime and uh, and to see your
little grandbabies.
Just, you know, their eyes areconstantly lighting up
everywhere they look andeverything, and, yeah, two years
old and five years old and theywere in.

Speaker 3 (05:21):
Yeah, it's really fun to go, so, yeah, that's the way
to do it.
And and then go home and take alot of Advil, because I was
carrying a two-year-old for 12hours and I didn't realize I
mean, I work out every day but Iwas like, oh my god, I actually
hurt, this hurts.

Speaker 1 (05:40):
So Susie was toting around 28 pounds with one arm
the whole time.
You know just like 28 pounds,just right there, and it doesn't
.
And it and it moves.

Speaker 3 (05:50):
It's not like it's just still yeah.
But, I don't.
But anyway, you know now, now Ikeep forgetting that I'm not 17
anymore.
I don't understand.
I keep thinking I can dowhatever I used to do.
But I pretty much I'm doing OK.
But you know what, donald?

Speaker 1 (06:06):
Yes, I do.

Speaker 3 (06:08):
We have such a fun, we have a great guest today, and
you know why we do.
Well, I really like this personbecause so many people in our
community told me you reallyneed to speak to Marty, this man
that you're going to introduceproperly.
You really need to speak toMarty, this man that you're
going to introduce properlybecause you two are very similar

(06:30):
.
You're very kismet, you know,whatever it is, whatever that
word I'm trying to think of is,but that we have very similar
stories with different players,that's all you know, and that we
approached our journey sosimilarly and indeed we did, and
so it's interesting, though, tohear it from a male perspective

(06:52):
.
So let's just get to theinterview and Don do a beautiful
introduction.

Speaker 1 (07:00):
Why I think I'll do that.
Former Wisconsin GovernorMartin J Schreiber is an
award-winning crusader forAlzheimer's caregivers and
persons with dementia, reachingaudiences nationwide at live
events and via media.
He uses humor and compassion toshare lessons from his ongoing
decade-plus journey as acaregiver for the love of his

(07:20):
life, his wife Elaine.
The author of my Two ElanesLearning, coping and Surviving
as an Alzheimer's Caregiver.
He details his experiences incaring for his beloved wife.
It is a love story that beganin the 50s as high school
sweethearts and takes us throughthe cruel twists of Alzheimer's
while still finding moments ofjoy through activities such as

(07:41):
music and simply holding hands.
Since her passing in 2022,marty continues to recognize and
support Alzheimer's caregivers,an unpaid workforce that now
exceeds 16 million peoplenationwide.
His goal for caregivers, whomhe calls heroes, is that they
learn, cope, survive and eventhrive during their difficult

(08:02):
journey.
We are honored to have him herewith us today, so let's not
take another moment and sayhello to Marty Schreiber.
Hello, marty.

Speaker 4 (08:11):
Well, hi Don Hi Susie Well thank you for the kind
introduction and a salute to twoof you for what you are doing
to better bring attention to andfocus on this whole business of
caregiving, and and and androar.
Oh, my goodness, when I heardwhat you were talking about with
roar, uh, how I sign me up.

(08:33):
Uh, you know, I don't even I'llgo to your website, but sign me
up.
Um, I'll tell you, um, withthat profit motive that there is
for senior care, it's verydifficult to get the degree of
training, the quality of workers, the quality of food, the
quality of the programming andso forth that they're talking

(08:54):
about and what happens.
And I don't get into this worldtoo heavily, but periodically
people send me manuscripts oftheir experiences as a caregiver
.
Periodically people send memanuscripts of their experiences
as a caregiver.
Oh my gosh, what people havegone through in assisted living,
memory care, even in hospice,even an area in homes which

(09:18):
claim to be the absolute best,and so forth.
There still is such a greatchallenge here to get the kind
of quality staff that thatallows a caregiver or a loved
one to walk away in the eveningfrom their, from their loved one
.
So very difficult to walk awaywith the comfort of knowing that
everything is going to be fineand what you are really doing is

(09:40):
not only helping the person whois in the bed in in the nursing
home, but what you are doing isgiving comfort, aiding a
caregiver, a loved one who hasto leave their special person,
has to leave them not knowing ifthey're going to be getting the
kind of quality attention, eventheir amount of attention, that

(10:04):
should be given.
So thank you for that and I'm,I'm, I salute you, thank you,
thank you.
I.

Speaker 3 (10:10):
I.
I thank you for saying that,and you're so right, because
everything you said reflectedwhat happened with my mom and I
two years ago, and and that'swhy we're doing the documentary,
that's why we're creating themovement, because even in a
five-star facility here in LosAngeles and even with a staunch

(10:33):
advocate like me caring forsomeone who I love dearly, I
could not get the kind of carethat my mom deserved.
And so I realized, you know, asit was going on, and I did my
homework and realized that it'snot my mom's story, it's
everybody's story and we reallyneed to change it.

(10:55):
It's just too profit-driven,like you said, and it's only
going to get worse.

Speaker 4 (11:03):
Well, as the population expands, there are
really no standards, no Assistedliving, memory care.
What does that offer?
What can you be assured ofgetting, and so forth.
Well, there is no assurance ofgetting anything, and so, by the
grace of God, hopefully, peoplecan find a place at this moment
in time that's going to givethem that comfort of knowing

(11:26):
their loved one is well takencare of.

Speaker 1 (11:28):
Hopefully, if not, they've got to fight like people
you know and those places doexist, but they are the minority
, and it's great when you see afacility that does it right,
because you know that it's apossibility, it's not impossible
and it becomes the model forwhat can be.
But until the system changesand until and you, as a former,

(11:52):
you know, governor, you know,you are, you are, you know, you
know the politics and howpolitics plays into this,
especially with the nursing homelobby, when we're fighting
against that, and you know, soyou've, you've seen it, I'm sure
, from both ends.

Speaker 4 (12:08):
Well, we're fighting money.
You know we're fighting theprofit movement and you know you
have our elderly citizens andyou put them into assisted
living, memory care or into anursing home, and the goal
should be quality care.
That's not the goal.
The goal is to make money forthe investors.
Yes, wait a minute.
That's all topsy-turvy, but soit's going to be a constant.

(12:29):
So I urge everyone to sign upfor ROAR and let's do the
roaring and let's make sure thatwe are able to.
Now individuals, too, can alsolook in their home state,
because there are many timesstate regulations that can come
into play that will help some ofthis.
But so my my hats off to thetwo of you for what you're doing

(12:50):
.

Speaker 3 (12:50):
Thank you so much.

Speaker 4 (12:52):
Every caregiver in the world owes you a debt of
gratitude, and every personwho's in a home owes you a debt
of gratitude.
My gosh so bless your heart.

Speaker 3 (13:02):
Thank you so much yeah thank you.
Well, let's talk about your,your journey and how you caught
here, because you know andpeople ask me this all the time
like you went through such along journey with your mom.
Why are you retelling the story?
Why are you doing?
You know, are because manypeople don't, many people finish
the chapter, chapter and moveon and and because, even if it's

(13:26):
, even if it's a lovely journey,it it's.
It's draining at best it's,it's heartbreaking at at best
it's bittersweet, and and.
But I, but you know you, youdecided to share your story.
So why don't we talk about howthat happened and a little bit

(13:50):
of your journey, of how you gotto my Two Elanes?
Because I love the title somuch, because there's definitely
my Two Mommies, I had my TwoMommies too.
I get it.
It makes so much sense.

Speaker 4 (14:03):
Well, with my Two Elanes, of course, the wonderful
girl I met when I was ateenager, in high school, and
was my wife and my partner, mycompanion, my friend, everything
you could ever ask.
Then there was a second Elaine,and that was the one who, at
the age of in her mid-60s, beganto lose her memory.

(14:26):
And so in that journey, whichwas like almost 18 years, in
that journey I found out a fewthings that really made a
difference.
One of them is, if Alzheimer'sis bad, ignorance of the disease
is worse.
And I realized that when thedoctor, when making the

(14:47):
diagnosis, he said there's fourthings that we should be doing
Numenda and Aricep, which aredrugs which I took, and they may
be late, I don't know, but wedid it.
And then socialization, andmake sure we do that.
And then a glass of red wineevery evening and walking, which
is the best exercise for thebrain.
That is all the doctor told me.

(15:10):
And so when I say there's onething worse than Alzheimer's,
it's ignorance of the disease.
I want the medical profession tounderstand that when there is
this diagnosis, there are twopatients.
So, depending upon whichstudies you look at, 30 to 40%
of caregivers die before theirloved one because of

(15:31):
stress-related illness.
They say that caregivers have a60% higher death rate than
non-caregivers.
So, within that framework, thenthere are two patients and now,
okay, so now we are twopatients.
How do we help the caregiver?
Well, we want to give theminformation, and one of the

(15:53):
things that I had a difficulttime doing, but once I
understood it, made all thedifference in the world, and
that was joining Elaine whereshe was at.
As long as I said, elaine, itdidn't happen on a Thursday, it
happened on a Friday, elaine, itwasn't the Jones it as long as
I said.
Elaine, it didn't happen on aThursday, it happened on a
Friday.
Elaine, it wasn't the Jones.
As long as I tried to keep herin my world, our experience and

(16:13):
our joint frustration and thediscouragement and the anxiety
was just so heightened and onceI began to understand that by
joining her world, her life canbe better, and also so my life
can be better too.
And wow, what a difference thatsort of made.
And so I'm beginning to realizethis.

(16:34):
And then I have a very goodfriend whose wife had early
onset and he would argue withher about whether she should
have on another sweater.
Wait a minute, we need to jointheir world.
Just simple, yes, Simple asthat.
And so that's what got me intoit, and it pink.

(16:56):
First of all, Susie, you and Iknow what it's like to go
through and see our dear lovedone lose their memory through,
and see our dear loved one losetheir memory, and see how they
lose then every one of theirhealth faculties, and so how it
goes and how painful that is.
And then to know that, well,there are things that we can do

(17:19):
in looking for moments of joy.
And so when I say moments ofjoy, for a moment I said the
doctor said that you know aglass of red wine every evening
and also going for a walk.
Well, Elaine got four weeksahead with a glass of red wine
every evening and we got threeweeks behind in the walking, but
the point is when we would gofor a walk because it's my world

(17:42):
.
She'd say, oh, look at thatbeautiful flower on elaine.
I had a half an hour.
That was the my time frame for awalk so, okay, we don't have
time to look at the bird?
No, we don't.
You know, we're caregivers.
If we can take a time and amoment to understand that there
can be moments of joy, thenthere's one other point, uh, and

(18:04):
that is that, as of this moment, there's not really a
realizable kind of solution tothis Alzheimer's not practical.
That's the same way it was 20years ago when Elaine was first
diagnosed.

Speaker 3 (18:17):
And so we sort of learned.

Speaker 4 (18:18):
We can't fight this disease head on.
So that's very discouraging,that's horrible.
But what we can do is we candetermine and fix a very
realizable goal which can giveus an upbeat in our heart, and
that is to help our loved onelive their best possible life.
That is a realizable goal andthat's something we can do, and

(18:42):
we can lay down our head in theevening and say, oh my gosh, the
pain is horrible, I miss mywife, but what we were able to
do is help her live a good day,a good life possible so suzy
started a long answer, but uh,oh gosh, you know, you know when
I think about, about you goingthrough as you did with your mom

(19:02):
and going back to the momentsthat I did, so challenging, so
so very difficult.
And then, plus, you had to fightthe, the nursing homes and so
forth.
The kind of care you wantedyour mom to have.
Anyway, I agree with you.

Speaker 3 (19:22):
No, I agree with everything you say resonates so
deeply with me.
It's one of the, it's the thingthat really brings me to this,
to this show.
It's the thing that motivatedme to do a short film about my
mom, which, before thedocumentary with Valerie that I,
you know my journey, learningto lean into my mom instead of

(19:48):
trying to, you know, wrestlewith this disease that I thought
I was going to be able to curebecause no one else was smart
enough, but I'm going to findthe cure.
And then I realized that thatwas just, you know, uh, very
lofty of me and impossible, notto mention.
I just decided I'm going tolean way into my mom and, like

(20:11):
you, not argue, not, you knowand just enjoy and find those
moments.
She was a singer, we sang, Imade her laugh, she had a great
sense of humor and if I could dothose, if I could make her
smile and laugh and get hugs andkisses, I was a happy girl,
happy camper, when you say that,I'm reminded I used to, as much

(20:32):
as possible, have lunch withElaine in that cafeteria, in
assisted living memory care.

Speaker 4 (20:38):
So one day we're having lunch and she begins to
cry and I said, Elaine, why areyou crying?
Well, she looked at me.
She said, said, I'm beginningto love you more than my husband
.
Well, I didn't ask her what'swrong with her turkey husband.
I didn't do that.
But what I did do wasunderstand and I try and point
this out to caregivers what I,what I understood.

(20:58):
Then it was not necessary forher to know my name in order for
our hearts to touch, like yousaid, singing songs and so forth
.
So I began to understand thatshe might need not know my name,
but our hearts can touch byholding hands, by giving a hug,
by singing a song, by justlistening to music, by being
together, by giving a smile andthose kinds of things.

(21:20):
As I learned along the way,that sort of gave me some relief
, like a salve, a soothing salve.
That's what I want to sharewith other people so they can
understand that there there arethese operative.
Yes, it's a tough, tough, toughdisease, but there are these
moments of joy that we can takeheart from and it's really being
in the moment.

Speaker 1 (21:41):
it's, you know it, because you have to.
I, I know some people get intowhat you know.
Know they call a loop whereliterally they'll say, maybe say
the same exact thing over andover and over every 10 seconds
With Susie's mom.
I was very close with her mom,you know I was very lucky
because my loop with her is shewould turn to me and just say I
love you and she would say thatlike and over again every 10

(22:05):
seconds.
And you know, after a while, nomatter what the loop is like,
for us it's like, oh my God,again, again.
And you have to realize thatevery time is the first time for
them and if you can just takethat and say that's their moment
, let me just enjoy it, let mejust be with there in that
moment.
That that will help you as acaregiver Instead of getting

(22:29):
frustrated over hearing the samething over and over.
Just be in the moment everytime, because for them it is the
first time.

Speaker 3 (22:33):
Yeah, and there's also, you know, there's also
technique with dealing withsomebody with Alzheimer's which
at the time, when she waslooping what Dawn's talking
about, I didn't have thosetechniques, techniques.
But now I know that if I was tosay, I know, isn't Don
fantastic, mom, he's the bestfriend, he's the son you should
have had, and then go, hey, mom,do you want a banana?
I'm going to change, I'm goingto redirect her and she's going

(22:54):
to forget about the loop.
But at the time we didn't know.
I didn't know how I was, justlike I was dog paddling,
learning as I went, and as I'msure you were too, marty.

Speaker 4 (23:06):
Well, I can remember once Elaine asking me how are my
parents?
And I said well, they're bothdead.
She said no, they're not,elaine.
When I saw her hurt, Idetermined I was not going to
put her through that again.
So then the next time that sheasked me how are my?
Oh, I said your mom's doinggreat.

(23:26):
I said your dad likes hissports.
And I said they're really very,very they're doing well.
Oh, she said that makes me feelso happy, you know well that's
what I call therapeutic fibbing,therapeutic fibbing, and there
I want you to know there are twothings.
The therapeutic fibbing numberone.
I tried it the first year ofmarriage and it doesn't work so

(23:48):
good the first year of marriage,no.
The second point, and I pointthis out to caregivers and I say
this you may not believe this.
I'm very honest with thecaregivers.
But I said you may not believethis.
But I said if you go back tothe Old Testament, when Moses
was on top of the mountainbringing down the Ten
Commandments, I was there and Ihelped him.

(24:09):
And when he asked for it, Isaid Mo, what can?
Don't call him Mo, don't callhim Mo, he likes Moses, but
anyway.
So I said Moses, what?

Speaker 2 (24:17):
can I he?

Speaker 4 (24:17):
said help me carry these things down.
So I carried them, we all theway down, we're perspiring, it's
in the desert and so forth.
People are looking at the front.
Of course, there's these anddon'ts and so forth, the 10
commandments.
I looked and it was written inArabic language.
But I looked on the other sideof those tablets and written in

(24:39):
good American English.
Therapeutic living is goodTherapeutic living is advisable.
Therapeutic living could make adifference in how a person is
able to learn, cope and survive.
Can you imagine that's rightthere?

Speaker 3 (24:52):
I had no idea, I hadn't.
That's really pretty important.
You look amazing for your agetoo.
I can't believe it.
Where's Mo now?
Where is he?
I mean Moses?
Oh, I got a great year.

Speaker 4 (25:13):
You're perfect.

Speaker 3 (25:16):
So, so you know, okay .
So I'm looking at my notesabout you and I'm looking, I'm
saying it took you more than adecade to come to these, these,
uh, these epiphanies that youhad, which is, you know, 10
years of of.
And I'm not judging it becauseit took me a long time as well,
but I want to hear you know,like what, what was that moment?

(25:39):
Because I know, for me it was.
I was fighting tooth and nailto keep mom in the present,
where she should, where Ithought she should be, but what
I mean, 10 years is a long timefor you to struggle through that
right well, there's no what wasthe switch, what was the pivot?

Speaker 4 (25:57):
yeah, well, I wish, I wish it would have happened
like a bolt out of the blue, butit it happened, a little bit at
a time.
I did go to counseling and Iwould encourage people to
understand that they're goingthrough a lot of emotions and
counseling could be a veryhelpful situation for the
process.

(26:18):
But it just sort of came to meand I began to understand, with
the counselor telling me aboutredirection, for example, and
Elaine wants a glass of wine at930 in the morning and no, you
can't have a glass of wine atnight.
It's not the answer.
Do you want red wine or whitewine?
Want to drink?

Speaker 1 (26:37):
with your friends.

Speaker 4 (26:38):
And, by the way, should we have a cup of coffee
while we're trying to figure outwhat kind of wine we should
have, and and so that pivot itand and I'll tell you what makes
the pivot so hard.
You do not want to leave thisperson who once was okay and
your intellect can tell you veryclearly, join the world of this
person who now is.

(26:58):
Emotionally.
That's very hard and so itmakes all that more difficult
for the caregiver and again,that's why I I wrote the book.
I wanted to try and help thecaregiver better understand that
, that that by letting go it canbe sort of an entrance into a

(27:19):
new type of positive life.
Uh, for, for both the caregiverand the person who is ill and
gosh, and that's where I get.
If Alzheimer's is bad,ignorance of the disease is
worse.
For a caregiver to understandfrom the beginning the
importance of joining the worldof the person who now is what a
difference that would make.

Speaker 3 (27:38):
Yeah, it can save you so much stress and angst.
I think what's really uniqueabout your story and telling
your story because I mean, we'veinterviewed so many people and
very few male caregivers andalso from a marriage, that kind

(28:06):
of relationship as opposed to aparent and child relationship,
which is so different, of course, my loss is oh, where's my
mommy?
That's going to be.
Love me and, and you know, noone loves you like your mom and
you know we particularly had agreat relationship.
So you know she was very uniqueand you know, one of a kind and

(28:27):
I just missed her, missed her,you know, a thousand times over.
But I always wonder what it'slike as a spouse and you've got
that, you know that dynamic thatyou know you once had this kind
of relationship and that mustbe so difficult day in and day

(28:49):
out of this change in yourrelationship, because now you're
really the parent as opposed tothe husband.

Speaker 4 (28:57):
Yes, a couple of things.
As the spouse, particularly asa male caregiver, one of the
things I want to try and havemale caregivers understand, and
that is that it is a sign ofcourage and not giving up to ask
for help.
And so, as a male caregiver me,we men, we think we don't have

(29:22):
to ask for directions any place.
We know we can do it all ofourselves.
And we, we have to get to apoint of understanding that if
we're surrounded by an enemy andthere's no hope of of, of of
survival, are we just going tosit there or are we going to go
for help?
And so going for help meanswe're not, uh, giving up.

(29:42):
It also is a sign of courage.
Going for help means we're notgiving up.
It also is a sign of courage.
And so, as a male caregiver, wewell, it's different because of
our arrogance.
And just a quick story.
So I go to counseling and I sayto the counselor I just cannot

(30:03):
see putting Elaine into assistedliving, memory care, I can't
see putting her into a nursinghome.
And she says you're not puttingElaine anyplace.
Well, I said, what do you mean?
Well, what you are doing isyou're giving her an opportunity
to be who she is now?
Can Marty Shriver's 24-7nursing home care take?
Absolutely not, and so thepoint of the matter is I,

(30:23):
selfishly, was in this battlewith Alzheimer's.

Speaker 2 (30:27):
I was going to take it for the wife.

Speaker 4 (30:30):
I was not thinking about what is in the best
interest of Elaine, because Iwas arrogant and selfish and
probably lacking of a herostatus.
A hero status would have said,hey, oh, you know, we've got to
do something better, we've gotto make an improvement.
I'm going to do this.
But no, it was selfishness andarrogance and finding when I got

(30:50):
that into my head, that this isnot my battle Again.
Going back, we can't beat thisdisease, but we can help our
loved one live their best lifepossible, and that made a big
difference for me.

Speaker 1 (31:04):
We'll be right back.

Speaker 2 (31:06):
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(31:27):
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(31:48):
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Speaker 3 (32:05):
As far as being a spouse, you're losing two
aspects of a relationship.
You have the interpersonalrelationship of a spouse and
then you have this person,that's just someone that you
dearly love.
So now there's two holes inyour heart, right, and that's a

(32:30):
whole other aspect that I didn'thave to.
You know, I've been through adivorce, so it's the same as
divorcing, like I didn't have myhusband anymore, so you didn't
have your wife and you didn'thave your best friend.
So that's two things that youlost, because those fulfill
those fulfill different,different needs and are a
different, different aspects ofyour, of your soul.

(32:52):
So I, just, I, just I.
I salute you for staying thereand being such a a pillar for
her.
And yeah, listen, it's not, Iget that, it's selfish.
I was selfish too.
I mean I wanted my mom to staymom, but I have to say that
every once in a while and it'sin my film about her is that

(33:14):
when the proverbial poop hit thefan, sometimes mom would come
out and out of nowhere, and momwould be there, the mom that I
knew, who would say I told yougo, look in the mirror, you're
fantastic, thank God for who youare, and that's it, you know,
and my mom came, she becamemommy for the second, and so,

(33:38):
you know, I thought okay, well,there's the gifts.
If we are patient and if we'rethere and if we listen and we
give them space, sometimes theysurprise you.

Speaker 4 (33:49):
I sort of had the same experience you did, but in
a different way.
I'm about ready to go to printwith the book telling my story,
marty Shriver's story.
Well, I found a series of notesand journals that Elaine had
been keeping since her date ofdiagnosis and I went through
those notes and journals and Iwant you to know we had prayed

(34:13):
together and we had criedtogether, but never did I get an
insight into the degree ofcourage it takes to be diagnosed
with this illness and then goforward, but also, susie, the
insight that those notes gave me.
By the way, each chapter of thebook begins with one of
Elaine's notes.
They help the caregiver or thereader understand what is going

(34:34):
on in the mind of a person whois in the journey of Alzheimer's
.
And so what I found out inthose notes is how much she
loved me.
And I found out she told notonly how much she loved me but
how much she depended upon mefor going forward.
And yes, it was not a verbalkind of statement, but it was

(34:56):
that in writing which gave me acomforting understanding that
this woman who is disappearinghas always given me that kind of
love.
And even though she wasdisappearing, disappearing, that
love expression was still thereand still there and you know,
and and I sit here and you and Iare talking I want caregivers

(35:18):
to understand.
What we are talking about is alot of pain and a lot of
hardship, but please take heart.
You've got to take heart in thefact that there's hope.
You've got to take a grip, ahold of the fact that there's
hope.
You've got to grip a hold ofthe fact that we can work to
help our loved one's life bemade better.
And also we can understand thatin this process you're probably

(35:38):
going to meet what I call canes, and so I have spinal stenosis
and I have to walk with a canemany times.
What does a cane do?
Well, it gives me balance, itgives me stability, it gives me
confidence.
It gives me confidence, ithelps me move forward.
And what could happen in thelife of a caregiver?
On this journey that you willfind canes, you will find
wonderful, beautiful people whoare going to be so helpful at a

(36:02):
moment in time.
And that's another thing we'vegot to do as it relates to roar,
and that's another thing we'vegot to do as it relates to war.
You know, I say that Alzheimer'sis not a chicken casserole
disease and so, hypotheticallyspeaking, I break a leg, you
bring me chicken casserole.
I have open heart surgery.
I can't get around chickencasserole.

(36:23):
My wife has dementia.
People don't understand thisdisease, they don't know what to
do and they stay away.
And now the caregiver is notonly feeling abandoned, isolated
by friends of maybe 25, 30years.
And so we've got to help peopleunderstand that Alzheimer's is

(36:45):
a chicken casserole disease fromthe standpoint of being
attentive and caring to both theperson on the journey and also
the caregiver.
And so it's a challenge becauseit's a stigma to many people.
They don't know how to handleit.
And that's not to say I'm notto blame.

(37:06):
I guess writing the book and soforth was sort of a way of
trying to make retribution forthe things I could have done
better, writing the book, tryingto make sure I could help other
people not go through the samekind of challenges that I went
through, sometimes needlessly.

Speaker 1 (37:24):
And that's so important because the caregiver
as you touched on before, thecaregiver is the other, not
patient, but the other personthat is involved and I think
that a lot of times thecaregiver.
Did you ever feel moments ofguilt when you said I need to do
something for myself, I need abreak, I need you know, because

(37:46):
you feel guilty?
It's like how can I not bethere 24, seven, seven days a
week?
If I take an hour from myself,I'm not doing you feel guilty.
It's like how can I not bethere 24-7, seven days a week?
If I take an hour from myself,I'm not doing my job and that's
actually completely the oppositeof what it should be
Counterintuitive, yeah you needto take care of yourself or you
can't be that great caregiver.
Did that happen to you?

Speaker 4 (38:03):
Don, you're right on target.
It is that guilt and becausethe disease is progressive.
No matter what I did today, Ithink I've got it mastered and I
wake up tomorrow and it's awhole new challenge.
Now, what am I doing wrong?
Here's what happens.
So I spend more time, and whathappens is maybe I don't now get

(38:25):
the exercise I should begetting and I don't get the
socialization that I should begetting, and I may not be eating
right, and I may not be eatingright and I may not be sleeping
right, and all of a sudden,these chemicals are building up
in my body and I become oneangry person, I become
irrationally irritable, myhealth could become at stake,
and that's why we talked about30 to 40 percent of these
caregiver dying before theirloved ones, and and, and and.

(38:47):
So caregivers, pleaseunderstand that having all of
this love for your loved one andnot take care of yourself,
that's, that's just absolutelycounterproductive to everything
that you feel, and and want tobe and experience.
It's absolutely against all ofthat, and so you've got to take

(39:09):
care of yourself.
And here's another point, don.
So I've not only becomeirrationally irritable, but also
I was getting to the point of 6o'clock in the evening and one
beep eater's martini helpedpretty good because I knew I had
made the day.
Well then, maybe 6 o'clock Iwould be another.
I think I deserve another onebecause, well then, maybe six

(39:30):
o'clock I would be another.
We really.
I think I deserve another onebecause not only you know.
And then and so, all of asudden, I got involved in what I
call the caregiver's poison,and that's alcohol, and so what
I finally began to understand.
My children had a, like a, aconfrontation what do they call
it?
Where they sit you down andtalk to you.

Speaker 3 (39:48):
Intervention an intervention.

Speaker 4 (39:50):
They had an intervention with me and they
basically said dad, if you don'tdo something, you're going to
be dead before mom.
We don't want to lose bothparents.
And so what I began and tounderstand is, yes, I love my
wife so dearly, but, by the sametoken, I have children and I
have grandchildren and maybe Ihave friends that can be, that I

(40:11):
can be of help to.
I can continue to be ameaningful person in the world.
And yes, this is all consuming,but by the same token, there
are other things that I can bedoing in life to carry on what
elaine and fulfill your own,your, you.

Speaker 3 (40:29):
You know you were self-medicating and you know,
for me I don't.
I, I I'm a social drinker, sothat wasn't my thing, but I
remember like trying.
You know, being an A-typepersonality, my mom was living
with me for a year after mydivorce and after my stepdad
died and I didn't want her to bealone in a facility.
And you know the cortisolyou're talking about all these,

(40:51):
all this.
You know chemicals.
I had so much cortisol and Iwasn't sleeping at all because I
would.
I'd be working.
You know, I'm a filmmaker, soI'm I'm working all through the
night and I'm thinking I'm a, oh, I can handle this.
And you know, I've never, I'venever gained weight in my life
and I'm like suddenly 20 poundsheavier than I've ever been
Because I'm not eating.
It's just that I'm not sleeping, I'm not taking care of myself

(41:14):
and the cortisol is raging right.
And the doctor told me she waslike your cortisol is off the
charts.
You have to sleep, girl.

Speaker 4 (41:24):
You have to sleep and you really have to take care of
yourself too.
To reaffirm, suzy, what you'resaying about cortisol one of the
one of the uh results of toomuch cortisol dementia.
You know, oh great, you know,wow, wow, and I think it's that
we have to take that makes senseWow, wow, wow, wow, wow, wow,

(41:45):
wow Wow.
Wow, wow, wow, wow, wow, wow,wow, wow, wow, wow, wow, wow.

Speaker 3 (41:49):
Wow, wow, wow, wow, wow, wow, wow, wow, wow, wow,
wow.

Speaker 1 (42:04):
Wow more by not taking care of yourself and
doing it without guilt and doingit with you know, with just
that's.
Yeah, no, I'm everything I dofor myself I'm doing for them
too.

Speaker 3 (42:17):
Yeah, yeah, and it's also, you know, at least for me,
and I know everyone's situationis different and some people
have a contentious relationshipwith the person they're caring
for.
They had it and maybe it'sbetter now.
But you know, and I and this isalso seen in my short film but

(42:38):
it was very profound to me thatmy mom was having a in the
middle of the night, was havinga, you know, kind of a, an
out-of-body experience, you know, wanted to go get out of there.
She thought I stole her baby,da-da-da-da-da.
And I'm following her down thestairs and it's very, very
cinematic in real life, and themoonlight's coming in through

(42:59):
the window and suddenly I sayMommy, stop running.
And she turns around and goesoh my God, you're my baby,
you're my baby.
And she looked at me and shesaid you got to put me in a home
, you got to live your life.
And I said oh, you're going,don't trust me.
And I said not.
Yet we made a joke, right andso, but you know so deep you

(43:23):
know her feeling was like and Iknow that the, that, the, the,
the mom without Alzheimer'swould have said Susie, what are
you doing?
I'm okay.
You know you have to have alife, and I tried to keep that
in the back of my mind all thetime so that I didn't feel
guilty, because I don't thinkmost people who are healthy

(43:46):
emotionally would want that foryou as their caregiver, don't
you agree?

Speaker 1 (43:52):
I'm sure Elaine did not want you to be unhappy and
suffering.
That's the last thing she wouldwant.
No, so it's totallycounterintuitive to what that
person would want in yourrelationship what that person
would want in your relationship.

Speaker 4 (44:10):
She said in one of her notes Marty, I need to take
care of yourself as well as forme, and so she realized that I
needed to go forward.
But I think even the caregiverwould understand that their own
self-interest I mean not thecaregiver but the person on the
Alzheimer's journey wouldunderstand out of their own
self-interest I mean not thecaregiver but the person on the
Alzheimer's journey wouldunderstand out of their own

(44:31):
self-interest, the caregiver hasto be healthy and take that
time off, that respite that,respite time and so forth.
I do believe that I do too,yeah.

Speaker 3 (44:45):
So what I know?
Yeah, first of all, thank youfor reminding me of the way that
you started each chapter.
This book is so good.
You really ought to everyoneought to read it, because it
really is written in such apersonal and you're very, you're
very transparent about themistakes that you felt you made.
I'm not saying that you, Idon't, I don't think I think you

(45:16):
did a wonderful job, mistakesand all, because I think we all
make mistakes, but you're very,you're very, open about it and
you're very, um, uh, you know.
So, you, you, you very, you werevery contemplative about how,
how this journey was and and Ithink that that's important,
without being exploitive, and Iand I really respect that about
the way that you told the storyand I and I do think that,
because you are a male of themale, of the male gender, that

(45:40):
it's so important though,because a lot of male caregivers
don't have people to talk to orcommiserate or under you know,
and they're not supported, and Ijust think that, for that alone
, your, your story is justmassively, um, impactful and and
important and needs to be outthere, and I'm really happy to,

(46:01):
you know, amplify it for, alongwith you, because I just think
that you know someone.
I know.
Don is a very tender, tenderhearted person.
He's been my best friendforever.
And you know people.
Some often think that men arejust you know, they can just
take it and you know it's, andthey, they just.
No, that's not true.
They, they, you know men arevery sensitive and also need the

(46:24):
support and also have differentways of of viewing.
So it's so.
What you're doing is such agreat service for other men who
are going through similar things.

Speaker 4 (46:36):
Yeah, thank you, thank you very much for that.
There's one other aspect of thisthat we men don't understand
and I think all caregivers, menor women and that is that, as we
see, our loved ones sort ofdisappear a little bit every day
.
I had a friend who retired andhe had dinner one night and he

(46:58):
died of a massive heart attack.
Snap of a finger gone, and itwas tragic.
So quick there was a funeraland people came by to express
their condolences and there wasclosure.
As tough as sudden as this was,there was closure.
A caregiver never gets closure.

(47:19):
A caregiver sees their lovedone maybe die just a little bit
every day and because of notgetting closure, we also go
through either acknowledged orunacknowledged grieving, and so
that is just something that isadded on to this pile of
emotions that are coming by.

(47:40):
And I wanted to be verytransparent in my book.
I wanted people to know thatit's okay to cry.
I wanted people to know that toshare your heart with somebody
because of the great pain,that's okay.
In fact, we're human beings andwe have the ability to share
and to love and even to hopetogether.
No-transcript Just a little biteasier.

Speaker 3 (48:35):
If you don't, I agree with you 100%, and not only the
caregivers but the whole worldneeds a better education on this
kind of disease, since it is soprevalent and too large of a
majority of even our in ourhealth care system do not
understand the disease andthere's a stigma that it occurs

(48:57):
in our health care system andthat's why you know that's part
of our, of our reform is toeducate our, our care, our
providers, to understand thedifference between someone with
dementia without dementia,because it is massively
different.
It is a not a one size fits alland if you don't understand the
disease, you're going to treatit you know incorrectly and and

(49:21):
that's so important, soimportant.
Can I, can I touch on one otherthing with you?
And you can tell me no if youdon't want to?
Um, lost our significant love.
Love, well, not my significantother, but our lover, our loved
ones in 2022, correct?
Yes, there's a lot of talkabout anticipatory grief.

(49:46):
You just touched on it a littlebit and you know, for me, my
experience with watching my momcrossing her over the bridge.
I thought it was going to besomething that I wasn't going to
be able to accept and take.
You know, as a little girlwatching their mom leave, mom,

(50:09):
leave this earth, I, my mom andI used to joke we're not leaving
, that's for other people.
We don't die, you know.
We just we'd make a joke aboutit and and but, and I told my
mom the night before she diedyou're teaching me how to live
and now you're teaching me howto die.
You, you know she did the best,she was a great mom and um, and
I cried when she first died.

(50:29):
But then I still haven'tgrieved the way I thought I
would and I'm just sharing thatopenly because I don't know if
I'm afraid to.
I don't know if I've grieved.
I grieved for 16 years, becauseshe had alzheimer's for 16
years and maybe you know I I Idid it all in those in that time
, um, but I'm wondering how thatwas for you when Elaine finally

(50:53):
left the earth.
How did you deal with that?

Speaker 4 (50:56):
Well, I think you sort of hit it.
As far as I look back, I thinkI grieved a little bit every day
, and by the time she passedaway, maybe I was almost grieved
out, although there were tearsand there was, you know great
sadness, but another factor thatcame into play along with that,
and that is I could not haveasked her to go on for another

(51:19):
moment, based on her physicalincapabilities.
You know he was just, you knowshe, he was just.
I could not ask her at all.
And and so because I I knewthat maybe the best thing for
her was to pass, and because Ihad that, you know, that

(51:40):
anticipatory or unacknowledgedgrieving over that period of
time, um, but it, like you,though I still haven't gotten
over it, she's still so forthforthright in my memories and in
my thoughts, and and, um, I'mgrateful that I have this period
of time to spend more time withthe kids and the grandkids, as

(52:03):
she would have wanted, as shewould have nurtured them.
And so, yeah, that wholebusiness of grieving.
They say that grieving is atribute to the one who passed,
and so I think that's what youand I did.
We gave that tribute to ourloved one, and somehow, you know
to know what, here, your momand my wife would not want us to

(52:26):
continue to sit at thegravesite and cry.
I think what they would say islook, I want you to get out and
make sure that we can makethings better in nursing homes
and make sure that people canfeel comfortable when they leave
their loved one at night, thatthey're getting good care.
I think that's what they wouldhave liked to have said and
would have said and probably didsay and you're making them very

(52:49):
proud and you're in their honor.

Speaker 3 (52:52):
Yeah, I agree.
Thank you Back at you.
Yeah, I agree.

Speaker 1 (52:57):
So going just backtracking just a little bit,
and we were talking aboutignorance and the lack of
education that we have.
I mean, realistically, if youdon't know anyone in your life
who has Alzheimer's, you're notgoing to sit there and go on and
study about it before it's evenpart of your life.
So most people, the time theystart learning about it is when

(53:19):
it happens when somebody intheir life, it happens or it
happens to them, whatever.
So you know, where do we getthat education?
What are the steps you wouldrecommend taking to get that
knowledge and to you know, soyou're not in the dark and it
doesn't take you 10 years tofigure it all out.

Speaker 4 (53:44):
I would try and get a hold of a book, something like
my book, whole of a book,something like my book, in other
words, something that's goingto give a realistic but not,
hopefully, a dire statistic,something that just sort of
presents some of anunderstanding of what the

(54:06):
process is going to be like asyour loved one is on this
Alzheimer's journey.
I think that would be one of thefirst things and it would be my
hope that when there would be adiagnosis like that, that the
doctor would in fact have peopleget in touch with maybe the
Alzheimer's Association or withsome other association who is

(54:27):
equipped to give them that basicinformation.
I think that becomes soimportant because you don't know
how to handle it, you don'tknow what to do, and to get some
insight into what that processis going to be like I think
makes all the difference in theworld.
That's really the basicbeginning.
Then, I think, from there totry and, like a tossing a pebble

(54:49):
in a pond, to try and makethose loved ones around you sort
of understand better andclearer what is happening.
You don't want to jump out tothe.
You know the great, great unclewho never you see again, you
talk with.
You know, children and siblingsand so forth, to help give them
a better understanding.
I think within that framework,there will be a molding of

(55:10):
hopefully, by the grace of God,a molding of comfort that's
going to help you sort ofthrough this by understanding
the disease and not getting inbattle with fighting it.

Speaker 3 (55:24):
Yeah, I think we also have to know at this point in
time that, like you said, manyof the inner circle do fade away
because people don't understandit or they're fearful of it, or
they just don't have thepatience for it.
Whatever the case may be,there's still that stigma and

(55:47):
you had mentioned it.
It happened with my mom, evenwith family members, the close,
our close circle people justfell off the face of the earth
and and and dismissed it.
As you know well, she doesn'tremember.
So what's the point?
And?
And it's hard to educateeverybody.
It's hard to educate them whileyou're still educating yourself

(56:09):
.
So I would you say, I mean, Isay this, I think you have to
just, instead of getting angryat them and resenting your
support or lack of supportsystem, you maybe just look at
them with understanding andunderstand that some people just
aren't as strong as you andthey can't deal with it.

(56:32):
They can't handle it and sothere's nothing we can do about
that.
We can't change them.

Speaker 4 (56:38):
Yeah, susie, that's such a great point.
Everybody handles grief theirown way, and maybe it's grief,
or maybe it's just that notbeing knowledgeable about what's
going on or being fearful, andthere is so much energy that is
required of a caregiver to keepthings on path, that when I

(56:59):
began to get angry and upsetwith the people who should have
been doing something more andcould have been doing something
more why not, are they doingsomething more that it began to
sap my energy.
And I sort of had to let go ofthat.

Speaker 2 (57:14):
And.

Speaker 4 (57:15):
I would encourage other caregivers to understand
that everybody handles thisthing a different way and, yes,
we can feel chagrined and we canfeel sad, but you've got to
just step back and understandwhat it is and then focus on how
we can make it better.
And it's not going to make itbetter by ruminating in our own
mind about it, because it's justtoo and there's not enough time

(57:38):
in a day for that.

Speaker 3 (57:40):
There's not enough time.
Yeah, 100%.
You have to pick your battles,and when you're a caregiver, you
have too many battles to choosefrom, so that should be the
last priority.
That you have too many battlesto choose from, so that that
should be the last priority thatyou have.
If that, if it's all a priority, you know and that comes down
to a little bit of the reformwe're trying to do is to really
educate the public because, youknow it, the longer you live,

(58:02):
the chances are of developingsome form of dementia is, you
know, are very high, and so whyaren't so?
Why aren't we taught more aboutthat throughout our lives?
And it's very important that weunderstand how it manifests,
what it means and how to dealwith it, so that we aren't
abandoning our loved ones andour loved ones' caregivers.

(58:26):
We're losing the sense ofcommunity.

Speaker 4 (58:31):
And maybe thus as it was, and maybe thus as it shall
always be, unless we dosomething about it.

Speaker 3 (58:37):
Yes.

Speaker 4 (58:38):
Unless which we can.

Speaker 1 (58:40):
Yeah, yes, agreed.
And sometimes isn't it possiblethat you know somebody who
doesn't want to be there.
It's like you're not askingthem to come over and help you.
You know, sit and do that.
But you can maybe ask somebodyhey, you know what, instead of
you having to go out and getsomething, can you possibly pick
hey, while you're out, can youpick this up for me?
Just little tiny things thatmake your life a little bit

(59:02):
easier, and they don't have toget fully involved, but they can
at least be part of yoursupport system.
And, is you know, is thatsomething you found that you
were able to do?

Speaker 4 (59:12):
The basic question is how can you best help a
caregiver and how can acaregiver best help themselves?
As it relates to friends, firstof all, if you want to help a
caregiver, my advice is oneacknowledge that you understand
what they're going through.
Acknowledge that you understandwhat they're going through, and
I don't know of any more kindthing you can do for a caregiver

(59:34):
than to just relate andacknowledge the challenge.
After that, then you don't saycall me if I can help you,
because caregivers don't do that.
Then what you could say is canI cut the grass, or can I take
the dog for a walk, or can I goto the store for you, or can I
come and sit with Mary orwhoever it is, for a bit of time

(59:57):
with Elaine and while you goout, and so forth.
But specific acts.
And then also for caregivers tounderstand and I want to drive
this home again to ask for helpmeans you're not giving up, and
so to ask for help from somebodymeans that you're in the battle
.
You're in the battle to fightit, and because of you being in

(01:00:17):
the battle, not giving up, youare going to be asking friends
to help and to do special kindsof things, and that, in turn,
leads to what we talked aboutbefore, and that is now you're
beginning to develop canes thatcan help you through this, to
give you that balance and togive you the courage to move
forward, and so forth.
And so, you know, I sometimessit and think, as a caregiver,

(01:00:41):
they didn't do this, they didn'tdo that.
But I had a responsibility too,and that responsibility was to
develop canes to help me.
My responsibility was to havepeople, you know, get better
understanding of what thechallenge is.
And it can't do it by me hidingin a cocoon.
It can happen by me sayingwould you please do this, would

(01:01:01):
you please stop by?
And so forth.
And so now, beginning todevelop a community of interest
around me, it would be prettyimportant and is very important
and very helpful I love that.

Speaker 3 (01:01:14):
That's exactly right.
It's like with any relationship, right?
You people aren't mind readers,so you need to tell people what
you need and and you know, andso that they know, so that
they're not set up to fail andthey can, they can help you.
You could say be very direct.
You know, if you could say it'dbe very direct.
You know, if you could justcheck in once a week?
You know, because sometimes I Idon't know and I don't want to

(01:01:35):
bother you, but it would begreat if you could check in with
me once a week, or if you could.
You know something like that,where you set you to set up some
things that that would behelpful for you and you ask for
them.
Now you're, now you're'reallowing them to fulfill that
and feel good rather thanfeeling like they failed you.

Speaker 4 (01:01:53):
That's correct, and they say that a path to a
friend's home is quickly overrunwith thorns for lack of
constant use, and I think againthe caregiver.
We have to look at ourselves astaking on the responsibility of
reaching out and having otherpeople be invited into our life,
and it could very well be thatpeople are standoffish because

(01:02:15):
they don't know what to do.
They don't want to offend,exactly.

Speaker 2 (01:02:18):
What should I?

Speaker 4 (01:02:19):
say Do I want to do this?
But then it's almost maybe arelief for the caregiver to
reach out and say would you dothis?
Oh well, thank you for makingthat approach to me, because now
I can feel comfortable doingthat.

Speaker 1 (01:02:33):
And of course then that grows Then that grows Right
, right, yeah, and some peopledon't even know that how to like
.
Should I be happy?
Should I be sad for you?
Should I?
You know, they don't know howto even.
It's like and likely you wouldwant them to be upbeat and they

(01:02:53):
don't have to be down and sadand oh my gosh, I think that
actually is counterproductive,and I think so sometimes the way
you put yourself out as thecaregiver saying, hey, yeah,
things are tough, but I need myfriend.
You put yourself out as thecaregiver saying, hey, yeah,
things are tough, but you know.

(01:03:13):
I need you know, I need myfriend, I need you know, let's
you know it's not don't beafraid, I think you know people
are afraid of how to deal withit.

Speaker 3 (01:03:18):
We model.
We need to model how weinteract with our loved one and
I think by modeling, people seethat.
You know, when I go to, when Iwould visit my mom, I always
came in like a tornado Hello,mommy, it's your daughter.
I'm here, susie, your favoritedaughter in the whole world,
because I'm your only daughterand I'd come in and do a dog and

(01:03:39):
pony show and I never tried tocome in dark or sad.
I wanted her to feel happy andfeel loved and whether she knew
who I was or not, I justreminded her.
I would just tell her.
I didn't ask her, I just sitbehind her so that you know.
That's what I was taught In myjourney from wonderful people

(01:04:02):
that knew better than me saiddon't make her guess who you are
, Just tell her right away.

Speaker 4 (01:04:10):
So I did, and so it's yeah, make her guess who you
are.
Just tell her right away.
So I did, and so, yeah, ifsomeone is making notes on this
discussion, what you shouldwrite down is what don said, and
that is as a caregiver, reachout.
I think that's a very importantmessage of all the things we've
talked about to help acaregiver, and that's to reach
out, and so someone reach out.

(01:04:30):
That's almost that's reach out.
That's not an acronym for roar,is it?

Speaker 1 (01:04:36):
reach out and, and we need a good r oh, you got 10
years, I just and rejoice andand rejoice, yeah, and and relax
, and yeah, we can make ahundred of them.

Speaker 3 (01:04:51):
Anyway, this was so wonderful.
Was there anything we missedthat you would want to share at
all?

Speaker 4 (01:04:58):
I just can tell you that I was just very pleased to
be with you and just very muchin admiration for what the two
of you are doing.

Speaker 3 (01:05:06):
So thank you, thank you, vice versa.

Speaker 1 (01:05:08):
We're honored to have you here today and for
everything you've done in thepast, everything you're doing
now and for everything you'regoing to be doing in the future.

Speaker 4 (01:05:19):
Yes, I'm not aging out for a while.
That's what.
Nah, not even close, I'mgetting to the time, penn, we're
talking and then, while peopleage out, well, I finally
understand what that means.
I don't want to do that no no,I don't believe in aging out.

Speaker 3 (01:05:33):
I think we are aging in.
That's what we are we're agingin.

Speaker 1 (01:05:36):
That's a decision, that's a decision you make.
I think it's a ridiculous.

Speaker 3 (01:05:41):
I think it's ridiculous.
The more, the longer I live,the smarter I am, and I don't
understand how we, how wediscount that, because that that
is a fact.
We get smarter If we're, ifwe're, if we're lucky to live,
longer we're, we're smarter,we're better for it.
So I loved this interview.
I loved it so much.
Thank you for joining us today.

(01:06:02):
Thank you for all that you do,you're.
You're a delight, first of all,and I just thoroughly enjoyed
the book my Two Elanes.
If you want to get this book,we'll have all the information
on the show notes and all waysto reach out to Martin Schreiber
.
We call him Marty, but I'mlooking, you know, being

(01:06:25):
respectful.
And yeah, if you need a speaker, this he would.
He's a wonderful speaker andreally representing a part of
our caregiving community that'sunderrepresented.
So please do that, and I justloved it.
And love is a theme for us,isn't it, don?

Speaker 1 (01:06:46):
Yes, and that's because love is powerful, Love
is contagious and love conquersall we do.
Thank everyone for watching andlistening today.
Please share, subscribe, do allthose fun things and we'll be
seeing you next time on LoveConquers All and join Roar
Everyone Roar.
Roar.

Speaker 3 (01:07:04):
Take care everybody.
Bye-bye, Bye-bye.

Speaker 5 (01:07:17):
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