Meet the Founders of AlzAuthors: The POWER of Caregiver Collaboration

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Don Priess (00:00):
When the world has gotcha down, and Alzheimer's

(00:04):
sucks. It's an equal opportunitydisease that chips away at
everything we hold dear. And todate, there's no cure. So until
there is we continue to fightwith the most powerful tool in
our arsenal. Love. This is loveconquers all is a real and
really positive podcast thattakes a deep dive into

(00:24):
everything. Alzheimer's, TheGood, the Bad, and everything in
between. And now here are yourhosts Susie singer, Carter, and
me, Don priests.

Susie Singer Carter (00:39):
Hello, everybody. This is Susie singer
Carter.

Don Priess (00:42):
And this is Don priests. And this is love
conquers all calls. Hello,Susan.

Donald. How do you how do you do today? How
are you?

Don Priess (00:52):
How'd you do?

How'd you sir?

Don Priess (00:56):
Milady I'm fine. I'm good. Yeah, no, that was great.
No good, good hanging in. Youknow, we're just you know,
finished one documentary rollinginto another.

Yeah. John just finished a documentary.
What's the name of it?

Don Priess (01:15):
The name is Jack L Warner, the last mogul and it's
about Jack Warner of WarnerBrothers. So a lot of people
don't even know that there wereactual brothers. But there were
and this is a story of a veryflawed, very amazing human being
who kind of helped was one ofthe pioneers of the film
industry. It's It's on all theplatforms now iTunes and Apple

(01:38):
TV and it'll be run on from timeto time on Turner Classic
Movies. TCM. TMC TF Turner moviecloud Turner Classic. It's one
of those.

I screwed it up. Yeah, I screwed it up.
And,

Don Priess (01:55):
and so yeah, so I just am finishing that up, or I
have finished that up. And nowwe're rolling right into what
are we rolling into Susan,

No Country for Old people, which is our
documentary on the systemicnursing home crisis that we are
trying to illuminate and get geta collective conscience movement
to get some change going becauseit's been going on too long. And
this weekend, we had a fantasticshoot, we shot our interviews,

(02:28):
we shot three wonderfulinterviews, Michael Wasserman
who's a geriatrician and also amassive advocate. And you he's
been, he's been interviewed onCNN and MSNBC, and he really is
a very outspoken and then wehave we got to do our partner,
Rick mountcastle, who is aformer attorney general who

(02:50):
spent 25 years investigating andprosecuting nursing homes for
fraud and abuse. And then we hada hospice doctor who was just
phenomenal who really, reallygave us an inside look at the
ins and outs the politics andand, and really what hospice

(03:10):
should look like. And it wasit's fantastic. I mean, just
FYI, this isn't going to be allgloom and doom, we're, we want
to find a solution. We want tokeep everything, you know, in a
in a hopeful way that we're nottrying to create knee lists out
there. So but we and speaking ofkeeping it in a good way, that's

(03:35):
not even a good segue. Speaking.
No, that's a terrible segue.

Don Priess (03:39):
Terrible. It's one of the worst segues why this
morning.

God dammit, I think I can come up with a
great, I think that I could be Ican say that I come up with the
worst segues which makes me thebest that the worst

Don Priess (03:54):
the best. Oh, there's nobody better or worse
ways.

Yeah. And I love that. I'm proud of it hops.
And Donald's today, yes, for aterrible segue for in keeping
with my terrible segues, we havethree wonderful guests. That is
this. This is a long overdueinterview, because we know them

(04:19):
very well. We know thisorganization very well. And yet,
we only know one of the foundersand it was a it's going to be a
pleasure to meet the other two.
And so tell us about today'sguests.

Don Priess (04:32):
Marianne Schuco is not a nurse who writes but a
writer who happens to be anurse, a nurse who has cared for
hundreds of dementia patientsover a 20 year career. Her novel
blue hydrangeas and Alzheimer'slove story is a testament to the
power of love in the face ofthis heart wrenching disease.
Ironically, two years after hernovels publication, she started

(04:52):
living her own story when herstepfather was diagnosed with
mixed dementia. She not onlybecame his medical, legal and
financial read presented, butalso for her mother who was
suffering from heart failure.
She's become a prolific writerand also launched her own
podcast, untangling Alzheimer'sand dementia and all authors
podcast. Our second guest,Jeanne Lee's parents were

(05:13):
diagnosed with Alzheimer's onthe same day. Her writing
Spencer first suspicions to adecade later holding her parents
hands as they passed. Shebelieves she was writing a
family story, but her draftmorphed into her memoir
Alzheimer's daughter. Leebelieves sharing vulnerability
supports others and helps themheal Leah's memoirs provides a
hand to hold for others goingthrough a journey of Alzheimer's

(05:36):
or dementia with a loved one byletting them know that they are
not alone. And our third guestis Vicki Tapia. After teaching
approximately 10,000 mother babypairs the art of breastfeeding,
Vicki found her energiesredirected to the other end of
life after both parents werediagnosed with dementia. A diary
written to help her cope withcaregiving morphed into somebody

(05:58):
stole my iron, a family memoirof dementia. Vicki has
contributed to various dementiacaregiver blogs as well as the
Huff Post, been interviewed forpodcasts and had numerous
speaking engagementshighlighting dementia awareness.
Together in 2016, our guestsfounded the nonprofit all
authors.com, a global communityof over 350 writers who are

(06:21):
writing all about dementia fromtheir own personal experience.
This ever growing globalcommunity is united in an effort
to light the way for others witha vision of lifting the silence
and stigma surroundingAlzheimer's and other dementias
through the sharing of personalstories. And with that, let us
welcome the fantabulous MarianneSchuco, Vicki Tapia and Jean

(06:44):
Lee, hello, how are you?

Yay, hello.
We did it, we got the threepillars here. So exciting. This
is so exciting. Also authors,you guys have created such an
amazing organization, and givinggreat platform and presentation
to this kind of, of literaturethat so needed. And you know, in

(07:09):
reading all of your reviews onall of your books, and and how
much you've helped people, andhow much you've touched people
and how many people youresonated with and, and made cry
and made laugh and and made feelbetter is such a it's such an

(07:30):
honor. It really is it and and Ijust applaud you for for all of
the your work. And I enjoyedreading all of your books and
and, and I have so much to sayabout them. But when I was
trying desperately to be a goodcaregiver, I didn't know anybody

(07:51):
else in my circle that hadanybody with Alzheimer's, so I
was winging it with a capitalwing, you know, and I didn't
know where to turn. And theplaces that I did turn to were
kind of useless. You know, a lotof just a lot of talk or, you

(08:13):
know, it was like a wild goosechase. But each one of your
books really personalizes it byputting it in such a in a
narrative way, as opposed to ascholastic educational, you
know, he how to book becausewhen you pray place, these

(08:40):
different anecdotes, you know,in a personal situation, it
really it really touches it'slike store, it's storytelling is
so powerful, right? So, I mean,I want to I want to start let me
just start with Jean and justsay I, I so loved your book, I

(09:00):
so loved it, I there was so muchin Alzheimer's daughter that was
that I could have got a HA HA HAand even though my mom was
completely different than yourparents, right. And, but but
that just just the dialogue andthe the joy and the bittersweet.

(09:25):
Do events that occurred just hithome. And I know that if anybody
reads your book, it will hithome so much. And it will make
it a lot easier and and it makesit more such an more elegant
journey. So tell me how you whatmade you what the heck motivated

(09:49):
you to sit down and rehash thiswhole story, but I you know, and
you know, I think I know whichcharacters you But let you tell
me, You tell us.

Unknown (10:03):
So I'm rosy in the book. And gosh, both of my
parents were diagnosed withAlzheimer's on the same day, I
was working full time as a thirdgrade teacher. As they were
declining, my only sibling lived1000 miles away. I live in Ohio.
She lives in Florida. Andreally, the book is a result of

(10:26):
my sister asking me to pleasekeep a journal. Oftentimes,
those relationships weresiblings that are distant in
proximity, are filled with a lotof disagreement and strife. And
that was not the case. For me,my sister was my greatest
support. And when I would callher and say these odd things are

(10:48):
happening, she said, Jean, wouldyou just start a journal so that
when we talk, which was nearlydaily, you can open that up, and
we can kind of see aprogression, and frequency and
timelines and who knows thismight even be helpful in a
diagnosis at some point. So Idid that for her. And it was
chicken scratched weights andblood pressures and things that

(11:12):
I found out at the doctor'soffice for their medical
appointments. But one week aftermy mother died, I was sitting
with my dad. And he let me backup to say, I read my way through
this journey with them, I couldnot have survived without the

(11:34):
stories of others who were braveenough to tell their personal
story, even though they weren'texactly like mine. They made me
get up each morning, put my feeton the floor, go to work, be a
caregiver, they made me know ifthat person survived. So can I
people like Marianne Schuco andVicki Tapia. Then back to

(11:58):
sitting with my dad a week aftermy mother died? They had been
married for 60 years. And hesaid to me, whereas that woman I
admired. He couldn't rememberher name. 60 years, one week
after she passed. And it made methink, Wow, maybe my story could

(12:25):
be helpful to somebody else,who's going through this same
kind of a journey, a dualdiagnosis and a simultaneous
decline. So I joined a localwriting group to help me write
my own story well, which wasintended to be just for my
family. And my writing grouphelped me flesh out the

(12:46):
manuscript and they said, thishas a bigger scope than your
family. And they encouraged meto publish it. And I did so with
great guilt, for tellingpersonal stories about my
wonderful parents. And after Ipublished it, I felt so guilty
and inadequate that I neededsomebody to tell me you've done

(13:09):
the right thing. And I reachedout to Maryanne Schuko, whose
book had guided me, I did notknow Marianne, I did not know
Vicki except having read theirbooks. And I sent Marianne my
book, thinking she'd throw it inthe trash. She doesn't have time
for this. And she read it andreached back to me and said,
it's it's lovely. It's worthy.
Will you work with me to elevatethese other titles written from

(13:33):
personal experience? Do you knowanyone else who's Who else have
you read? And I said, Well,somebody stole my iron by Vicki
Tapia.

Yeah, and that's,

Unknown (13:46):
that's years ago.

Amazing.
When you say guilt, and you feelguilty about you know, exposing
these sort of the private thingsthat happen within a family and
you want to protect them, and Iknow, I also experienced that a
lot. And in doing thedocumentary, I think, what would
my mom be okay, with? Would yoube okay with anything of this?

(14:12):
And I have to you know, and it'sreally difficult for me because
it's the last thing I want to dois be an, you know, exploit this
situation, and yet if we don'texpose, then nobody knows.
Right? And and so I do I grapplewith that as well.

Unknown (14:36):
And you know, Susie, it wasn't just the guilt of writing
the book, it was the guilt ofthe entire caregiving
experience, because I felt likelittle almost like I was
whittling away at theirpersonhood, and every shaving
was a piece of them that I wastaking away from them. I felt

(14:58):
like I was taking every Stayingaway from the people who gave me
everything throughout the wholejourney. And then publishing the
book was just like, oh my gosh,what have I done?

is interesting because it feels to
me from, you know, outsidelooking in, you gave so much to
them, you allowed them to havesuch a beautiful journey, the
best way they could have in the,in the circumstances. And it has
such a, you know, a notebook. Itfeels like, you know, Riyadh, it

(15:32):
has a beautiful, lovely tone toit. And if I, God forbid, had to
be in that situation, that wouldbe the situation I would want to
be in. Right? And not Yeah,which is a great segue to Mary
Ann's book, too, because bluehydrangea also gives me that
feel, because it's such abeautiful book. And it's in a

(15:55):
has that, that, that thatcomponent of dignity in it. And
and that, you know, holding onto what's left, and not wanting
to give up and, and you know,listen, I told my mom, I would
I'd never put her in a home,right ever. And in your book,
this is a similar situation. Andyet you come to the point,

(16:18):
right? And it also resonatedwith me because my mother at one
point, you know, said Susie, wewere visiting a family member
who was you know, veryprogressive, my mom said, not
me. Ah, right. And then you turnto 20 years later, and you say,
she's full blown Alzheimer's,and you say, Mommy, how are how

(16:41):
are you? And she'd say, I'mgreat. Life is good. The
alternative sucks. So you whichwhich mommy do you listen to?
Right? Which one do you respect?
And which one and I had tochoose this one? Because this is
who she is now. And you know,but your story has a different

(17:02):
twist. But but but because youit's a story of a friend. Right?
So tell us a little bit aboutbecause we you've been on the
show before. And you told usabout it. But remind people that
haven't heard it because it'sreally gorgeous. Blue
hydrangeas.

Unknown (17:20):
Thanks so much. It's a novel. So it's based on people I
met through my work as aregistered nurse. I was a case
manager at a hospital in a Iworked in a rehab unit. At the
time when I met these people,and they just really intrigued
me. She had Alzheimer's. He didnot but he was medically frail.

(17:40):
And they were quite advancedyours. And she had fallen and
needed to go into like furtherrehab. She had broken her
pelvis. And then she was gonnago to a nursing home for rehab.
And that's when I came in. And Imet them. And I met their son
and their son's whole thing washe wanted to coordinate the
transfer himself and bring hismother to the facility himself.

(18:04):
I guess he maybe had feelingsthat maybe his dad wouldn't go
through with it. So I said,that's fine, you can do that.
But later on that evening athome, I just kept thinking about
them and wondering what wouldhappen if somehow they just left
and they didn't leave with theirson and he was didn't arrive in
time? And where would they go?
What would they do? And so thatbecame the whole premise of that

(18:25):
story. And it was based on thatcouple and several other couples
that I had met where the husbandwas the caretaker because it's
usually the woman that's thecaregiver, right? Caring for her
mom, her husband, her children.
And I knew that men arecaregivers, but they also often

(18:47):
aren't projected that way. So Iwanted to tell their side of the
story. And that's why I chose tomake it Jack Be the hero of the
story.

Yeah, also a little bit like away from her
the movie, if you haven't, ifyou've ever seen that it's
beautiful, too. And it has amale caregiver who is grappling
with how to how to to adjust tothis new, this new wife, that's
not the same wife. And it's,it's it's very poignant. And
and, you know, and I in yourstory, they he he makes a pivot.

(19:23):
I won't give it away, but Ithink you know, yeah, it's,
it's, it's, it's from the heartand it really, it resonates. You
know, it's very, it's very, it'sbeautiful. I really love it. And
I know, your background startedas you are. You're a nurse. So
you saw a lot of this right?
Yeah. Oh, yeah. And well, yeah.

(19:46):
And and then it didn't happen inyour family later, right?

Unknown (19:50):
Yes. Yes. My stepfather was diagnosed like shortly after
my book was published. So in mymom, she was medical the one
that was medically frail. So shewas really not helpful for the
for his journey because she hadher own issues and she didn't
hear well. And she just reallycouldn't comprehend. Not that

(20:11):
she had cognitive impairment oranything, but she was pretty
much deaf. And she just couldn'tfollow along in these very
intricate, complicateddiscussions, you know, around
dementia care for her husband,so I coordinated all of that.
And that was a real eye openingexperience. You know, it's one
thing to coordinate it for otherpeople. But when you have to do

(20:31):
it for people, you know, thatyou're close to and that you
care about, then it's completelydifferent is that emotional
factor is huge.

It's a whole nother story. It's a whole
other story on another story,and it's not for the faint at
heart. Isn't it's not?

Unknown (20:47):
It's hard. Yeah, it's hard. You know, that's what Kim
best says she's one of ourauthors. And she says, this is
hard. That's it's hard. There'sno easy way to get around it.

There is no easy way I talk about that all
the time. I say we made I madethat the best I could. But the
best sucks. You know, it is notgood. It's not you know, it is
not good. But we thought we finda way to make it do to to get
the best out of it. That likeVicki you you also like Jean had

(21:24):
two people that your caregivingfor at the same time I'll be at
different diseases but not butstill there was cognitive
impairment from both Parkinson'sand Alzheimer's. Right. Right.
And I would I let me just saythat. Well, first of all, the
title of your book is so great.
Somebody stole my iron. Causesorry, yeah, no, listen, my mom.

(21:49):
Somebody was stealing somethingat all times with my mom. You
know? Okay. Did you steal? Didyou steal my ring? Did you
steal? Everybody stolesomething? It's in my movie?
Yeah. Did you take you know,that was it was constant.

Don Priess (22:07):
Iron. It was.

It was? No, it was everything else but. And
truth be told she was stealingeverybody else's things. She was
living with me. It was likeshe'd have my daughter's
earrings on and my and she gotmy daughter would go nanny. Can
I have my earrings back? Whatare you talking about? She's
crazy. These are my earrings. Iremember buying them. Thank you.

(22:31):
It was like, we learned to goYeah. And they look good on you
by. So you know, I had tototally understand that. But I
loved your book, too. Becausethe very I love the do's and
don'ts. Which I think if you'vebeen through this journey,
you'll go Uh huh. And if youhaven't when you get that to
those points, and you'll thinkback to it and go, right, right.

(22:57):
I'm gonna do that. Because it'svery, very onpoint. But so tell
tell me because I haven't talkedto you. We even talked to you
before what how you aremotivated to write this kind of
book that resonates with peopleas you know, everything you
wanted to know about thisjourney, and we're afraid to ask

Don Priess (23:20):
and tell the iron story please. Yes.

Unknown (23:28):
I'll start with the iron story. One day, I got a
phone call from my mom and she'sVicki thinking you need to come
out here. Somebody stole my ironYeah, I think they broke into my
apartment and they took my artwell she had it started in the
bottom drawer of her dresser. SoI said okay, Mom, I'll I'll

(23:50):
check into it and I went on outto the care facility and sure
enough, her Island was gone. Andwe went and we talked to the
people in the laundry room wetalked to the administrator and
we put out an All PointsBulletin for the island it was

(24:11):
gone without a trace. So mysupposition is Mom took it down
to the laundry room to ironsomething and left it with
someone else. Oh an iron orsomebody you know just Yeah,
picked it up and took it andforgot they have it. Right. So
the case of the missing iron wasnever solved.

Don Priess (24:31):
It says a lot though. It does. It does. It
says so much. In that onesentence. It tells you so much.

Unknown (24:38):
Well, yeah. And my book like jeans started as a journal.
I actually was to keep my ownsanity I had like UCITS is the
nobody around me was goingthrough what I was going
through. And so I could onlytalk to my friends my kids, my
husband so much about it andthey're like okay and that
already, so I took to thecomputer because it never talked

(24:59):
to I just kept a written recordof everything that happened and
transpired about a year or sointo it all I thought, hmm, you
know, I should probably put thisinto some kind of journal for my
family so they can have it as amemento. So I kept all my notes
and I kept writing things kept.
I kept remembering things, thestory, that story, so I kept

(25:23):
finessing it and, and then I gotdone. And finally, after a
couple of years, three, fouryears, I don't know, I went to
Kinko's and had it I printed itout and spiral bound gave one
teacher, my kids, and I wasdone. However, I've lent it out
to a couple friends, and they'relike, why aren't you publishing
this? And I'm like, I don'tknow. And then a friend said,

(25:47):
you know, I loved your book, butwhat how does it apply to me?
You know, if my mom hadAlzheimer's, what can you tell
me how to do this or what Ishouldn't do. So that was the
impetus for my do's and don'tsat the end of the chapters.
Thank you, my friend. And Iadded those, then I started
thinking about guilt, guilt,guilt, guilt, if I do this, my

(26:10):
brother will never speak to meagain. So I put it away in a
drawer three years went by, andit kind of took root and started
to sprout, because friends wouldsay, I, I heard you wrote a
book, can you show themanuscript? And after probably
the fourth or fifth person said,Why aren't you publishing them?

(26:30):
I reevaluated and thought, Okay,fine. My brother doesn't even
talk to me now. So, yeah, itbecame a book and a little bit
like Jean, I just had thatguilt, like, Oh, I'm putting out
private stuff about my family.
Oh, so the greater part is thatI could find very little to read

(26:54):
back in the early 2000s. Aboutanything to do with this, like,
nobody, there was manuals andDoctor books, and like how tos,
but I want to, I want to hearfrom a person that had gone
through it and what they'velearned and what they did to, to
get through it, how did theysurvive? And there was very
little written. So I decided Iwould fill that niche

by Oh, it's a gift. It's a gift. What you
guys, all three of you havedone? Because that's what we're
looking for is like, Oh, theywent through that. And how did
they get through that? And didthey feel? Good? Were they
pissed off? Or were they good?
Yeah. And did they? And did theyget mad? I mean, there was one
point when when my mom wasliving with me, and I literally,

(27:39):
she's so tiny, she's five foottall, right? And I was like, I'm
going to lift you up and put youin your room right now. Because
she was being so she was beingso yeah, I called her and I was
like, I thought and been for asecond I stopped and went, What
am I doing? Like, who am I?
Like, you know, it's like, I hadno idea what was going on. I

(28:02):
mean, I felt so bad, but thenreading other people's things,
everyone gets to that point atsome point, you know, and I'm, I
was, I had to laugh about it. Imean, I know if my mom was in
her wits, she'd gug skill useme. But it gets you to that
point, sometimes. It reallydoes.

Unknown (28:25):
I think our mother sounds similar. Really? Well, I
don't know. I just,

ya know, what you wish she a little
pistol? Oh, yeah. Yeah. Yeah.

Don Priess (28:40):
And so are we. Okay, go ahead. No, I was gonna say
before we then dive into thenext step, which was creating
the community that you created,which is our I wanted to just
ask each of you about justwriting during this process in
general, even if it's somethingand and this is for those out
there who are maybe goingthrough it right now. Is the
writing process during this evenif you're not planning on

(29:01):
publishing a book or making abook, but just is it do you find
it to be therapeutic? Did youfind it to be something that
boy, this really has enabled meto move to the next because I
now have kind of taken that onmy brain and put it on paper?
Was it something you'd recommendfor those who are going through
it right now, we were notplanning on doing a book.

Unknown (29:23):
I definitely would recommend it as a coping
mechanism. It worked wonders forme, I felt the the stress would
come out of my fingers into mycomputer. And it helped me face
another day, because I couldleave that behind them and move
to the next day, reload,decompress. It was it was a
coping mechanism for me.
Definitely. And I wouldencourage people to keep a

(29:46):
journal for sure. Gene You havedifferent it was not
for me. People asked me was thiscathartic? And nothing could be
further from the truth. For meit was agony to write I read it.
And I would put it away. It'slike, No, I can't do this

(30:06):
anymore. And it was basicallyagony because of the guilt. It
put it away. No, I am not comingback to this. And then it would
come to me in the night. Or itwould come to me as I was
driving to work. And thesebeautiful phrases would come to
me. And I think I've got to goback and write that. And those,

(30:30):
those beautiful things wouldcome to me. That's what would
draw me back to it. But so itwas a mix of agony, countered by
beauty. For me.

It's the metaphor of like, diamonds
coming from the pressure, right?
I mean, it's it takes. Yeah.
Yeah. I think that's what withall of us, though.

Don Priess (30:53):
Yeah, even though it was painful that you I don't
think you would have to go backand say it now, I wouldn't have
done that.

Unknown (31:00):
No. And, you know, it was painful, until we formed all
those authors. And through allthose authors, we have healed
one another, and we take on thepurpose of healing others.

What do you say Marianne? About that.

Unknown (31:26):
My experience with Alzheimer's was pretty much
professional. At the time Iwrote my book, I had three aunts
who had had it and understoodthe situation from that point of
view, which was not theircaregiver, but I witnessed. So I
didn't realize it really like apart of me in the sense that it
was was Jean and Vicki, but Iknew I just do my work of how

(31:51):
people in this situation arejust starving for information.
And in stories are a greatinformers. So that is really why
I wanted to write thisparticular story, because I
could have wrote a book aboutanything. Little did I know at
the time that this was a veryhard subject to put out there.

(32:12):
So I didn't really feel like Iwas being healed by it until
after meeting with Jeanne andVicki and starting off as
authors when my stepfather wasdiagnosed, that was, like, where
I went, you know, my, I hadthese two very close friends
that we work together. And theyhelped guide me through that

(32:33):
whole horrible situation where,you know, I, like I said before
I had met helped other peoplenavigate that journey, but it's
different when you're the onedriving the train on that
journey. It's you you can't evenimagine until it happens to you
what it feels like and every,all the obstacles and everything

(32:54):
you encounter, because everybodygives you these pat answers as
to what to do next and all thatbut nobody tells you about all
the little rabbit holes thatsurround each step and where you
the mind you're going to step onand, and how things aren't going
to work out the way you wouldexpect them to. So that was very
healing for me is having themthere to help me along the way.

(33:17):
I wouldn't have made it throughthat.

I totally relate to that. I think, you
know, I'm I'm not I haven'twritten a book, but I've made
movies. And you know, my mum andthe girl I I was encouraged to
do it. Because of this. Thestory was so powerful, you know,
and ridiculous and likeunexpected in my mom, but which
is my mom that just personifiesher. And and I thought no one's

(33:44):
gonna want to who this is a thisis not a universal little story.
It's the little one off. But wegot so many people saying You
told my story. Thank you. That'smy mom. That's my aunt. That's
my grandma. That's my sister.
That's my wife. You know. And sowe we were blown away. And

Don Priess (34:06):
believe it. Yeah, we were when we were sitting in the
edit bay, we're like, is anyonegoing to relate to this at all?
This is so specific. It's so nand to find out that there's so
much shared in everyone'sindividual story is it's it was
mine, like you said,

and I used to go to my mom because she was
alive at that, you know, upuntil last year and I'd say
Mommy, I'm so proud of you.
You're telling your story. Andit's so it's touching so many
people and I said I'd and she'dgo I go she'd go what? Why? And
I go because you're fantasticand she'd go That's true

Don Priess (34:49):
you find that same thing that you were there was
personal things that you thoughtoh no one's gonna this is got to
be so unique and you have peoplego oh my gosh, I can't I
experienced the exact samething.

shaking hands. Yes.

Don Priess (35:03):
Yeah. For those listening right now, everyone's
nodding Yeah, yeah, go ahead.

Unknown (35:09):
Let's say to me you this story is my story too,
which like really meant a lot tome, because I felt that kind of
the same way, when I put it out,there was such a niche topic.
And when I wrote it, it wasn't along, it's not a long book, it's
only about 50,000 words. And Ihad all these chapters, and I
didn't know how to make themflow. And I remember laying all

(35:31):
the chapters on the floor in theliving room, and then just like
moving them around and put theminto the sequence that I that I
wanted, and wondering if thatwas even going to make any
sense. Because it hasflashbacks, you know, and they
go back into the past andexplain what happened. And then
what's happening today, and itwas very urgent. Story, like,
there's a lot of action andstakes are high and all of that

(35:54):
toward the end. So yeah, it was,it did resonate with a lot of
people. And when people wouldwrite to me and write reviews on
Amazon, and let me know, howmuch it meant to them, when they
saw themselves,

I just think that all these stories
don't just, they don't justapply to dementia and
Alzheimer's. You know, it's it'sreally how we deal with any kind
of challenge. And, you know,their challenges, are they they
run a certain course, they mayhave different, you know, lanes.

(36:29):
But nevertheless, there's thesame, there's similar bumps and
and we and so I think there'ssome kind of universality to it.
So look at that I said thatword. Okay.

Unknown (36:47):
I just wanted to add that, you know, now, eight years
later, after the formation ofAWS authors, and over 350
authors and their books that wefeature, each one is a specific
story of events that they thinkare completely their own, and

(37:11):
will not resonate with anyoneelse. And in reality, they all
resonate with everyone, becausethey're just all details of a
progression that caregivers whoread them can see that can key
into Oh, yes, something likethat is happening in my journey,

Don Priess (37:34):
and to be prepared for something that might happen
if you're going through it.

Yeah, yeah, it could happen. And yeah,
you're not gonna get suckeredpunched? As much as we all did.
Right? When when your mother wholoves you, like more than life
itself goes, You're a whore?
Like what?

(38:01):
Are you think I would have beenbetter prepared for that? But I
think it's I think it's amazingthat the three of you came
together, you didn't know eachother before you wrote your
books. So how did it happen?
Tell us this magic. That becamewhen I became als authors, which
is so incredible. Now you're nowyou're an official 501 C three,

(38:23):
nonprofit, bravo, I'm reallythink you guys have just, it's
amazing. And you're running onfumes, guys. I mean, we need to
raise money for our documentary,but they also need support. So
don't forget that everybody,because these kinds of things
take, take a little bit of workand manpower, female power,

(38:46):
woman power,

Unknown (38:49):
whatever, Mary and you tell the story.
So I had written and publishedthe book, the novel and had a
really hard time finding myaudience for it. So at the time,
I belong to a different authorgroup, where we all helped each
other by sharing our books onsocial media and websites, and

(39:10):
newsletters and blogs and thingslike that. It was a partnership.
And I was with them for about ayear or so. And then one day, it
just dawned on me like why don'tI see if I can find other
authors of Alzheimer's books andsee if they might want to do the
same thing. So I reached out toJean and I asked her and she
said, It's great idea. Wedecided to do a one month

(39:32):
campaign. And she got Vicki tojoin us. And so it was for one
month Alzheimer's month in June2015. We were just going to
feature each other's books,three books on each other's
blogs, websites, social media,and present it out that way. And
we really had a good time. So inNovember when that came around,

(39:54):
which is caregiver AppreciationMonth, we said why don't we just
do this again? And then it Inthe following year in 2016, is
when we decided why don't westart our instead of like
blogging and trying to get blogposts elsewhere, why don't we
start our own blog and every dayin June, we will feature a new
book, which was like an amazingundertaking, but we were doing

(40:16):
it Monday to Friday. So it wasgonna be 20 books. We didn't
even know 20 people. So westarted reaching out to office,
we had authors we had read andwho was an you know, who are in
the top spots in the Amazoncategories, and reached out to
people and ask them if theywould like to write a blog post,
and we gave them like criteria.
And at the end of the month, westill had more blog posts when

(40:40):
we ran out of days. So we said,why don't we just keep it going,
but we'll just do it once aweek. And we kept that up until
last year 2022, because we werejust getting exhausted by it.
And in the meantime, we hadcreated the podcast, we were
doing virtual events, and we hadother things that were going on

(41:03):
that we were involved with, andother team members as well. So
we split and decided to do ablog post every other week
interspersed with the podcast.
And so we were doing that for awhile. And then this year,
things kind of fell apart alittle bit because I had another
caregiving journey that Iunexpectedly went on. And that's

(41:23):
ended. So that interrupted mypodcast. So that's kind of how
we got started. We, we didn'tknow each other, we didn't have
a plan. We just wanted to sharethe books, we knew that it was
important. We knew thatcaregivers were dying for
information. Everybody here waslooking for information at one
time and couldn't find it. Youknow, Susie and I, I always

(41:44):
correlate it to like thecaregiver, you know, 5060 year
old woman, I think, in theevening, finally, her loved ones
put to bed for the night. Andit's quiet. And she says, Let me
see if I can get some answers tomy questions. I got like 15
minutes, I'll go on Amazon, I'llgo on Google type in, you know,

(42:04):
Caring for Mom with dementia,and I get a million hits. And so
I start clicking. And then soonI'm lost. And I don't even know
what I'm looking at anymore, orwhat I'm looking for. But at all
authors, if you come toAlzheimer's dot com and you're
looking for something to helpyou with caring for your mom,
you're going to find acollection of like 50 or 60

(42:25):
titles that have all been vettedby experienced caregivers and
authors. And you're going tofind something in that small
cohort, that's going to work foryou that's going to relate to
you when and you don't have towaste your time sifting through
a lot of other stuff that's notrelevant.

That's amazing. So I'm gonna throw this
to Vicki what when when Mariansays you vet it, it's vetted by
caregivers? And what is thecriteria criteria for someone
to, you know, submit their bookto all authors? And what do you
look for? And who does thevetting? How does it work? Okay,

Unknown (43:02):
good question. It's evolved over time, the way we
did it, the first year isconsiderably different than the
way we're doing it now. So I'mjust going to talk about now,
yes. When someone we approachesus and says they would like to
pursue becoming and as authorswill direct them to our
submission form, in which theyfill out and gives them they

(43:24):
give us all this informationabout their book. And we have
certain requirements that youneed to have a certain number of
reviews, like, I think it'sabout five to 10 reviews, and
you'd need to be on to farms andsocial media actively not just
pretend and be open to providingfor other people's books. This
is a collaborative endeavor,we're not out to just throw out

(43:47):
a promote our own book, but weare, you know, under all under
the same tent, and it's involvesthen if well, for every book
that we look at, we need to readit first, before we get too far
into the process. So if thissubmission form, looks good,
they've met our criteria, thenwe'll ask them to send us a

(44:09):
butchery. And we have oureditors, the three of us and we
have three other people that arevolunteers and other one of our
board members and a couple otherpeople that read books, and we
then decide sometimes it mightbe a joint. Someone might say,
What do you think about this,and the rest of us will put in

(44:30):
our two sensors, and we'lldecide whether or not we're
going to invite them but if theypass muster, they'll be invited
to become an AWS authors andalso author and be invited to
write a blog post for us andwe'll move forward from there.
We are booking about sevenmonths into the future right
now. So there is a bit of a wait

so Jean, what is the muster that you have
to pass when you read the book?
What's the muster?

Unknown (44:57):
Well, number one, it has to be written from person
All experience, even though wehave caregiver guides, and
children's books and fiction,but they are all written based
upon a personal story, even thecaregiver guides, we do not want
stages of Alzheimer's, medicalterminology, names of drugs,

(45:23):
clinical studies, it has to bewritten from the heart, and it
has to be well written and welledited. And I just add to what
Vicki said, in that we'llcontinue our promotion of these
authors forever. It's not a oneand done, we just we keeps
circling back to them andcreating social media for them.

(45:47):
And our attention is, sincewe're a global organization, and
really, Marian and Vicki and Ihave only met in person a couple
of times in the eight years, Imean, we work in a virtual
office space, a Slack space,it's very important that all of
our authors buy into the factthat they are promoting the

(46:10):
works of other people, that weare a reciprocal community like
that. It's, you know, I thinkVicki, Marianne, and I, and
every author that comes to uscomes, comes because of their
own work. They want to promotetheir own book, but they soon
learn that there is so much morevalue in being one of a huge

(46:36):
organization of over 350 authorswho are lifting you up. So
that's the value, instead ofbeing one lone person trying to
get your story out there, andyou come to love the other
books, and there, it is a realsisterhood brotherhood that we

(46:59):
form with between our authors.
Because we've all walked someparts of the same path.

You get submissions, how many of those
submissions percentage wise, doyou know? Loosely? Do you
reject?

Unknown (47:13):
40? I think I would honestly say 4040
Personal. Yeah. I agree.
It has to touch the heart. Ithas to touch the heart and be
well written.

Yeah, it's interesting because as with this
my podcast, and I've met so manycaregivers, because we're in our
sixth season. So it's been it'sit's admits a lot of authors.
And I've had so many of myguests asked me to put in a good
word for them to you.

(47:52):
Yeah, say I really gotta getinto all this author's good word
for me.

Don Priess (48:01):
You ever run into where it's like, it's a very,
it's a great book or it but yougo, wow, it's just too similar
to this one? Or does it matter?
Does it mean that doesn'tmatter? Because it's all because
and you do you ever think boy,we're gonna, there's got it's
gonna be run out? We're gonnarun out of stories. Because, you
know, now that you because youdon't, because everyone's life

(48:21):
experiences. So yeah, we are. Weare with all the similarities.
Yeah.

Unknown (48:29):
I think that has been what's what's so beautiful about
Mary and creating the podcastfor podcasters. It's like, how
do I find gas? Well, we have 350plus guests, like, hey, I want
to do a podcast, you know, we'vegot them ready. And waiting.

(48:50):
Because they've written a bookand we've posted, featured their
book on all those authors, andthey all want to be on the
podcast. So it's been so unique.
Yeah.

And I think even with love conquers all, we
have people that are dealingwith Alzheimer's, their
caregivers, or their experts,and you think are we going to
run out? Is that are peoplegoing to get bored? You know,
sometimes I think, am I sayingthe same things I said last
time, but it's okay. It's okay.
You know, and

Don Priess (49:20):
everyone's hears or sees everything. So, you know,
you're okay. And there areshared experiences, of course,
but everyone does have thatunique angle. Yeah. Now, do you
give feedback and then do theymaybe sometimes come back and
they make it in is that has thathappened?

Unknown (49:37):
Definitely. You know, if we, if someone comes to us,
and they have been afraid ofsocial media, they have no
social media. We'll help themyou know, we'll say, Let us help
you start your account. Youknow, a lot of people they have
no idea how to make a graphic toput out on social media. We'll
put the time in to help them andif we see them, grab on to that

(50:02):
and take off with it will say,please resubmit or resubmit.
Once you've had this gone overby by an editor. The door is
always open again, as long asit's a personal story.

Don Priess (50:19):
When you give specific notes, like you said,
oh, you know that those 100pages about your that personal
history, just know, you know,that needs to go away or
something where you get get bethat specific,

Unknown (50:33):
I would say I've, I've had some books like that, and I
won't say that needs to go away.
But I'll say our what ouraudience is not interested in
that they want to read aboutyour Alzheimer's journey, not
your personal family history. Sothat's the way I handle that,

(50:57):
sometimes we will give a couplespecific thought like on page
45, you might notice other thanto see, you probably would need
an editor to go through yourbook. So just to kind of get
them started to so they knowthat we're not just making this
up that there actually are somethings that they could fix and
then be considered.

Don Priess (51:16):
How long is the process from the time somebody
submits to the you either getback to them, yay, or nay is it

Unknown (51:22):
try to get back to them fairly soon, within a few days
to say, please send us yourbook. So then the balls in their
court, they've got to get thebook to us. And then once we get
the book, we have to read thebook. And then we'll if we
accept them will write back andsay, you know, we'd like to
invite you to become an author.
And this is what we need fromyou, and give the list of things
we need. And say we can't saveyou a spot until we get all your

(51:44):
information. So then it's intheir cart again, some people
are very quick, I've had peopleturn around in the next day, I
have everything and it's good.
I've had people a month or twomonths or more that just you
wonder what's going on. Andbecause they were so eager, you

(52:04):
know, they disappear.

I want to say I want to give you another
compliment is that I know Iwon't say the name. But I know
another author who was been aguest on my show, our show and
then had self published and wenton, you know, became an author,
and now has a proper publishingdeal. And and, and that I know,

(52:31):
you know, yeah, someone we alllove love dearly, dearly. You
provided that opportunity. So ityou know, and it's because this
particular author is very selfmotivated and very, you know,
he's very, he or she is veryresourceful. And, and, and

(52:56):
really use the platform tobenefit the progression of this
book. So it can be done. Ifyou're listening and you want
and you feel very, you know,ambitious, and you want to you
know, get start seeding youryour art, I mean, this is this
is a wonderful organization. Andagain, I say support this

(53:16):
organization, as well, becausethere's not enough support. And
if there's not enough realsupport, and very, I'm very
blunt these days, but there'sjust not enough real support for
caregivers. There's a lot ofHyperbole and a lot of noise out
there. But that doesn't meanit's good care, it's good.
Support. There's a lot of peoplethat are let see a big number of

(53:39):
caregivers, that 53 millioncaregivers and you know, it 53
million times $1 is $53 million,right? So there's a lot of
people, there's a lot ofcapitalism going on. So be
careful. Be careful about theinformation that you're taking,
get Be careful of the sources,you know, look for people like,

(54:00):
like Vicki and Jeanne andMarianne, who actually have you
know, walked the talk been inthe trenches and get it and
actually have a real purposebecause, honestly, I, I, I've
been in this community for 17years now. When my mom was
diagnosed, you know, she passedaway last year was diagnosed 16

(54:20):
years before that. And this,this industry has grown so big,
because of the population ofcaregivers, and so whenever
there's, you know, anopportunity for people to
capitalize on that they will. Sothat's become an issue and I'm
just putting that out therebecause here we have a great,
you know, all's authors isauthentic. It's real. It's it's

(54:43):
nonprofit in the, in the, themost, you know, nonprofit where
you can be and so, I mean,there, you know, there's
nonprofits who are nonprofit,but yeah, just just just Try to
be discerning about where you'regetting your information from.
Because it's really important,because a lot of times a lot of

(55:07):
a lot of care support is nosupport really out there. So
this is a place to go to reallyget good support. And,

Don Priess (55:16):
and I think you consider, like, you know, right
now I'm looking at fourdifferent people who are past
it, they're, you know, they'renot caregiving anymore, but
they're still here. And thatthat, to me, tells me it's far
from performative. Far from justsurface and opportunistic. These
are people who really care. AndI think, you know, if you're out

(55:37):
there looking for people whocare, consider that consider the
ones that are still doing itafter their journey has ended.

Yeah,

Unknown (55:45):
thank you, John, I wanted to just say to that, I
would never want to discouragesomeone who was self published,
from submitting to all thoseauthors, because both Mariana
and I are self publishedauthors. But we did it with
precision. And we wanted to puta really quality product out

(56:09):
there with a good cover. And welook for the common story, the
everyday person's story. So ifyou're self published, and
you've done it, well, pleaseconsider submitting.

Wow, this is great. Did we do we have any
other anything that we missedthat you guys want to put out
there? Talk about compliment,say anything? What's a recipe I
don't know. And

Unknown (56:38):
this is our our eighth anniversary, our eighth birthday
and jubilation.

Happy anniversary. That's, that's
awesome.

Unknown (56:48):
We've just started a new initiative in the past year,
to these books that live online.
On our website, we have beguncustom caregiver collections
where people can order a customset of these books for like,
their senior care community or adoctor's office or so we're

(57:08):
trying to bring them out ofcyber and really into people's
hands.

Oh, that's great. That's really wonderful.
Yeah, we can put that in theshow notes, too. So let me know
about that.

Don Priess (57:22):
Yeah. But we'd have you saying it. So it's
fantastic. Yeah, we

have? Yeah,

Unknown (57:28):
I want to tell you about, I'd like to tell you
about the most recent event thatwe did, which ended up being a
huge success, and I'll spill thebeans on it, just because it's
us. So we wanted to put on apoetry reading. So we had about,
we have about 17 books of poetryin our collection. So I was the
one in charge of this project.
So I take completeresponsibility. So I wrote an

(57:50):
email introducing, invitingthese authors to come to the
poetry reading. And when Ifinished it, I double check to
see who I was sending it to. AndI had it set to go out to
everybody on the list, everybodythat we mailed to, which was
like 1000s people. And so Idon't know, I know, I don't want

(58:12):
that list. So I changed to thelist that I had made for this
particular event, and sent outthe email. And then the next
thing I know, I'm gettingresponses from people that I'm
like, oh, that person's not onthe list, and why are they
wanting to come? And they're nota poet. And then I looked and I
saw that I hadn't, what I didwas I didn't save it. After I

(58:32):
chief switched the list to thelist of 70 people and it went
out to 1000s people. So I said,Oh God, what are we going to do
now? Because I mean, I'm gettingall these great responses from
people that we weren'texpecting. And now I have too
many people. Right? So we said,okay, you know, it is what it

(58:52):
is, we'll just let everybodycome and whoever comes comes,
and we're just not gonna worryabout it. And so we ended up
with over 30 poets on that day,which is a lot of poets amazing.
Yeah, it's a lot of poems andtook us about two hours to get
through everybody, and they gotto read twice. So they got to be
like two poems or whatever. Andit got so much the commentary

(59:16):
and the response to it was justtremendous. And like, we didn't
expect that I didn't expectthat. I mean, I figured it would
be a good event. You know what,I did not expect the breadth of
it and set now you can eitherlisten to it on our podcast,
it's in two episodes, I had tosplit it in half. Or you can

(59:38):
watch it in whole on our YouTubechannel. And see the poet's
reading their works. And some ofthem I mean, there was laughter
and tears in people's stories.
You know, some of the poems werevery elegant and complex and
others were just very simple andjust told all of these different

(01:00:00):
points of view and stories abouttheir loved one about their mom
and the husband. I mean, it wasjust it. You didn't want it to
end. It was a beautiful thing.
So it's called poetry for thedementia journey. You can find
it on our website on our podcastin our YouTube channel.

Susie Singer Carter (01:00:16):
You'd have lovely.

Don Priess (01:00:17):
See, it was a beautiful mistake, but that was
a beautiful.

Unknown (01:00:22):
Okay, well, that's kind of the whole story of also
authors. We never had a masterplan in this. It just was fly by
the seat of our pants as peoplecame to us. It's like, okay,
okay, well, we'll make thisgrow.

That's kind of what caregivers do. They fly by the
seat of their pants, right?

I just enjoyed talking to you guys.
This has been long overdue. And,you know, we love Marianne. And
by the way, thank you for beingso supportive of everything that
I've been doing. You You arealways retweeting and reposting
and you're just really, youknow, the real deal. You are the

(01:01:01):
real deal for sure. Yeah. Soyou're

Unknown (01:01:04):
all in it together.

Yeah. Happy to leave variants Schuco You
guys are awesome. Gal to allauthors. If you need anything,
get those new, those newcompilations of books for gifts
and, and listen to the poetrywebinar and be part of the
community and know that when youif you go to authors, you're

(01:01:29):
getting, you're getting goodinformation. It's real. So thank
you, ladies, and I love you somuch. I think you guys, thank
you love you, too.

Thank you so much.
Thank

you. Bye, bye. Bye. I love those ladies,
don't you?

They are they really a real deal? They're really the
real deal. Yes, fine.

Marian cracks me up because I when I
first when we first interviewedher, and and. And we had we felt
like she was very likescholastic and you know, prim
and proper, we didn't know. Andthen when we told her about our
podcast, I love Lucifer, whichis for Yeah, which is the comedy
horror. And it is there's a lotof expletives in there. And, you

(01:02:17):
know, and it's, and she went andbinge it and lab salutely loved
it was like, promoting it allover the place. So we just, we
just like, love her becauseshe's so surprising. And so
great. And this was fun gettingto meet her partners too, right?
Absolutely.

Jean and Vicki, were just like, you could tell that
just the bond that they have,even though they said they've,
you know, they've only met eachother like twice in the eight
years in person. But the bondthey have in their in their
common, you know, vision. Andwelcome to 2023

where people don't don't actually ever
know person.

Exactly. But it's working. And they just keep
growing. And it's really it's sounique.

done from the it's done from the heart.
It's done from a right place.
Yeah, done. Yeah. And so well,that's because you know, what's

done from its love.
From love. You know, here's alittle behind the scenes, you
know, every week we have tofigure out how to get to where
we need to end this thing whichis working in the word love. And
we just did it in a seamlessway. And now we have to do it
again because it wasn't thatsmooth. Do better.

So you know this podcast she if she can do
it now. Yeah. Always at the endof every podcast you just think
what what was the engine ofevery one of these stories with
every one of these journeys? AndI would say that the engine is
love

you What has Yeah, be well be you know why? Yeah.
And that's because love ispowerful. Love is contagious.
And love conquers conquersolves. It does. And we would
love love if you would like ifyou would love us like us,
follow us share

and sponsor us come on board. We swear. I'll
make a great commercial for you.

Sure, if you if you really feel like you need 100%
tax donation, please considerdonating to No Country for Old
people or documentary that isgoing to hopefully change the
way that our nursing care andhealth care system handles our
most beloved people who are andin fact Guichard agrees that

yes, it's all tax deductible. You can find
where to donate in our shownotes. It's that were our fiscal
sponsors the national consumervoice for quality long term
care. Thank you. We love you andwe'll see you next time.

Absolutely take care

All Episodes

Episode Transcript

Popular Podcasts

Stuff You Should Know

Dateline NBC

On Purpose with Jay Shetty

.css-15opob5{left:0;position:absolute;top:0.8rem;} All Episodes

.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Meet the Founders of AlzAuthors: The POWER of Caregiver Collaboration

Episode Transcript

Popular Podcasts

.css-r6mb8g{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:1;overflow:hidden;}Stuff You Should Know

Dateline NBC

On Purpose with Jay Shetty

All Episodes

Meet the Founders of AlzAuthors: The POWER of Caregiver Collaboration

Stuff You Should Know