July 6, 2024 • 73 mins
In Episode 92, Don and I talked with three prolific writers who have made profound literary contributions to the Dementia community and now pooled their talents and love of poetry to launch a beautiful anthology, “Poetry For the Dementia Journey”, that sprung from an online event featuring over 30 poets. (This just may be one of my favorite episodes!!)
Marianne Sciucco is not a (dementia) nurse who writes but a writer who happens to be a nurse. Her novel, Blue Hydrangeas, an Alzheimer’s Love Story, is a testament to the power of love in the face of this heart wrenching disease. She has since launched her own podcast “Untangling Alzheimer’s and Dementia: An AlzAuthors Podcast” and is the Co-founder of the non-profit AlzAuthors.com, a global community of over 300 dementia-centered writers.
Ann Campanella is the manager/director of AlzAuthors and is a former magazine and newspaper editor. She is the author of two award-winning memoirs and four collections of poetry. Her first memoir, Motherhood: Lost and Found, tells the story of her mother’s descent into Alzheimer’s and was named “One of the best Alzheimer’s books of all time,” by Book Authority two years in a row.
Sue Fagalde Lick has been nominated for the Pushcart Prize in both fiction and nonfiction and won first prize in Willamette Writers Kay Snow Awards for poetry. Sue is co-founder of the Central Coast chapter of Willamette Writers and former president of the
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Transcript
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 Alz. A real and really
positive podcast that takes adeep dive into everything
(00:25):
Alzheimer's. The Good, the Bad,and everything in between. And
now, here are your hosts SusieSinger, Carter, and me, Don
Priess
Susie Singer Carter (00:39):
Hello, everybody. I'm Susie Singer
Carter.
Don Priess (00:43):
And I'm Don Priess.
And this is love conquers allcalls. Hello, Susan.
Susie Singer Carter (00:46):
Hello, Donald. How's it going? today?
We're having a great day. We'rehaving a great day having a
super fun day. You know, it's itseems to be even though we don't
know when people will belistening to this. But for us,
it's Friday, which meansabsolutely nothing, because we
work all weekend anyway. Soyeah, Happy Friday. Happy Friday
(01:07):
to you.
Don Priess (01:08):
Yeah. So what are you looking forward to doing?
Susie Singer Carter (01:13):
No, I don't have anything to look forward
to. That's really exciting. Ithink. No, I mean, it's boring,
because we're talking about thesame stuff about some tedious
work that we're doing on the onthe documentary. But again, we
you know, by the time you hearthis, maybe we'll be finished,
(01:33):
maybe we'll have distributionthat we can announce. But as of
right now, we're working with alegal team to clear everything
so we don't get sued for youknow, in expose days, a little
background on expose days, wedidn't know is that if you don't
clear every little minutiae ofyour project, you you leave
yourself very vulnerable tolawsuits, and for slander,
(01:57):
liability, all those yummythings. So you have to hire a
very expensive team of lawyersthat, you know, forensic ly go
through the project with you andmake you do lots of changes and
things so that you're protected.
And then you get insurance and,and it all costs a lot of money.
So it does
Don Priess (02:17):
show every question.
Sometimes we like have aquestion for them. We go, oh,
no, no, no. If we type thisemail and ask them this
question, that's gonna be $400.
So let's not ask that questionright now.
Honestly, like, yeah, it'sreally, it's really scary. Like,
you know, we've raised all thismoney ourselves, and we think,
Oh, we have plenty for our mixesand the pretty stuff, all the
(02:41):
polishing that we need. And thenit's like, you get a bill for,
you know, a half a week and it's$2,500. What How did that
happen? Where did that happen?
We didn't even we talked for twominutes. Yeah, it's super
expensive, but they're they'rereally they're great. They're
very good God for them becausein the long run down the line,
this is cheap insurance, if youwill, because you know Yeah,
(03:03):
everyone's litigious so yeah,and even though we're not just
have to have enough for mybodyguard, I have to get enough
for my bodyguard.
Susie Singer Carter (03:14):
Susie's
Don Priess (03:14):
Susie's gonna need a bodyguard. You know, because the
lobby is coming after her afterthey see this be even because
they don't want to they don'twant everyone to know what's
going on. So yeah, look at
Susie Singer Carter (03:30):
the new Aaron Bronco is on? He's on the
prowl. Okay, no, I don't care.
This is my purpose. What are wegoing to do? Yeah, you know,
Don Priess (03:42):
just go for it.
That's what I see. Yeah. Bebold, big and bold. So yeah. So
if you if you are, if you haveany need for a tax deduction,
we're still in the market for alittle bit more support for our
project after we've got our lastbill from the lawyer. So please,
you know, head on over to thenational consumer voice and
(04:03):
we're on their front page, andyou will find a way to make a
donation if you're so inclined,and we would be very so grateful
for your help is 100% taxdeductible, because they are our
fiscal sponsor. And so it's awin win. It is a win win. All
right, and no one else is a winwin. It's actually a win win
(04:26):
win.
Susie Singer Carter (04:30):
Today that's a win.
Don Priess (04:32):
We're loaded with guests and they're fantastic.
And I'll tell you more aboutthem. I'll right now. Marianne
Schuco is not a nurse who writesbut a writer who happens to be a
nurse, a nurse who has cared forhundreds of dementia patients
over a 20 year career. Her novelblue hydrangeas and Alzheimer's
love story is a testament to thepower of love in the face of
(04:54):
this heart wrenching disease.
Ironically, two years after hernovels publication, she started
living her own story when herstepfather was diagnosed with
mixed dementia. She's become aprolific writer, and also
launched her own podcast,untangling Alzheimer's and
dementia and all authorspodcast, and she is the co
founder of the nonprofit all'sauthors.com, a global community
(05:15):
of over 300 writers who arewriting all about dementia from
their own personal experience.
And Campanella is the managerand director of vols authors,
and as a former magazine andnewspaper editor. She's the
author of two award winningmemoirs and four collections of
poetry. Her writing has appearedin newspapers, magazines,
(05:37):
literary journals, and onlinesites all around the world. Her
first memoir, motherhood Lostand Found tells the story of her
mother's descent intoAlzheimer's at the same time and
was trying to become a motherand dealing with a series of
miscarriages. This memoir wasnamed one of the best
Alzheimer's books of all time,by book authority two years in a
(05:57):
row. Su frugality lick is aprolific writer of books, poems,
essays and articles. She hasbeen nominated for the Pushcart
Prize and both fiction andnonfiction and won first prize
and Willamette writers case, noawards for poetry, a former
president of the Silicon Valleybranch of California writers
club, and writers on the edge.
Sue is co founder of the CentralCoast chapter of Willamette
(06:20):
writers and former President ofthe Oregon poetry Association.
She has taught workshops inarticle writing, creative
writing, and publishing acrossthe country. And coming June 25
2024, Sue is releasing herlatest work no way out of this a
memoir about Sue's Alzheimer'sjourney with her husband. Today,
they're all here to talk aboutpoetry for the dementia journey,
(06:41):
a beautiful anthology thatsprung from an online event
featuring over 30 poets duringNational Poetry Month. And to
find out more about thiswonderful creation. Let's say
hello to Marianne Schuco. AndCampanella, and sue for galtee.
Lick. Hello, hello.
Susie Singer Carter (06:59):
Wow. Hi, ladies. Thank you for coming
here. I'm so impressed with allI like all of your biographies
are so impressive, and I don'teven know where to begin, are
talking about your poetry. Butthere's so much to talk about
with everything else you'vedone, that it's extraordinary
(07:19):
office jump in, if you don'tmind and just say I let since
since Marianne, I feel as is thetroop leader here because I know
her the best I'll say, Mary, andhow did you? How did you meet
Anne and Sue? And how does thiscollaboration of poetry come
together with the three of you?
Well,
Marianne Sciucco (07:38):
Well, it this was a long time in the making. I
started AlzAuthors and back in2015 was to other current
members of our team. And hejoined us about a year or so
after we got started, shediscovered us somehow you can
probably tell that better than Iam. But she discovered us and I
(07:59):
wanted her book to be a part ofalso author's mission. And, you
know, yes, definitely, andjoined us in that way. But she
also wanted to do a little bitmore and volunteered the use of
her editorial and writing skillsto help out, you know, and then
next thing, you know, she's onthe board. And so she's been a
(08:20):
board member for many, manyyears now, and is kind of a
guiding force in many of ourprojects. She works on the
custom caregiver collections.
And right now we're redoing,we're getting a brand new
website. So she's been likebehind the scenes helping to
finesse that.
And then sue came into theorganization maybe a couple of
years ago was her book ofpoetry, gravel road ahead.
(08:43):
That's usually how author joinsus is, you know, they discover
that we spotlight these booksand promote them for free.
Pretty much we now charge asmall submission fee. But in the
past, we didn't. So peoplecouldn't would join us and kind
of not, not really, I don'tthink understanding the depths
(09:04):
that they could become involvedin. It's not just a place to
park your book, but it's acommunity of other authors and
other caregivers. So Sue joinedus and
came to some of our events andwas, you know, flooding around
the edges. And ironically, shewrote to me a few months back,
telling me that she had justcompleted her term as president
(09:26):
of the poetry club that she wasin and she had some free time.
And did we have any projects?
And I said, Yeah, I'm puttingtogether a poetry book. And I
knew that she had publishedseveral. So I was like, Would
you like to help us publish ourpoetry anthology? She said, Oh,
yeah, she jumped right on it.
And she worked really hardputting putting it all together
(09:46):
for us. So we appreciate that somuch, because you know, we all
work for free here at allauthors. We're a nonprofit, and
nobody gets a paycheck. But weall have really strong My
desires and passions to tellcaregiver stories and to help
people that are currently on ajourney.
Susie Singer Carter (10:07):
Absolutely, I mean, it's so incredible what
you do, because you created thiscommunity of writers and
literature that, you know, isdirectly in support of
caregivers and, and inparticular dementia. But
caregivers in general, really,and and, and it's, it's
extraordinary, because, youknow, like, like all of us, we
(10:29):
all, like our podcasts, youknow, it's all done as a labor
of love. And it comes out of ourown experiences. And it's and,
and it's what we bring to thetable is our experiences. And
that's what is powerful, in thatsense, powerful, and all your
books, and you've really,really, you know, branded
yourself as, as the thedestination for these kinds of,
(10:51):
of stories. You know, I hear itfrom people all the time, like,
oh, you know, you know thatpeople from all authors, can you
get me an introduction? Youknow, so you really have created
a really beautiful brand. foryourself. Yeah. And I'm, I think
it's fantastic. And so well, andwhy don't you tell us a little
(11:14):
bit about yourself as well. Sojust where you know, how you how
you ramped up to this positionwith ALZAuthors.
Ann Campanella (11:22):
I would love to.
I really found all's authors tobe a place that was exactly
where I wanted to be. Becauseafter my mother had Alzheimer's,
the saint for 14 years, and itwas, when I was in my 30s, early
30s, it began and I was soisolated. And I really, and I
(11:43):
was a writer, and I was isolatedand caring for my mother. And
the one thing I wanted to do wasto reach out to others and find
ways to just make more of acommunity for people who were
experiencing this kind of loss,and just going through the
craziness of what I experienced.
(12:06):
And so all these authors justwelcomed me, Marianne and Jean
and Vicki, who were part of itat the time, and Katherine at
the time, they were just sohappy to have somebody else to
help. And I just wanted to pushthe word that there were
resources out there for peoplewho needed them. And of course,
(12:27):
I also wanted people to read mybook, because I felt like it
could help others who had whowere isolated themselves, and
were in a similar caregivingsituation. So it has it's just
been a wonderful community. Andwe've just become such close
friends through this process,which is really another
blessing.
Susie Singer Carter (12:48):
Yes, absolutely. And Sue, where did
sue go? Troublemakers back,okay. She we had we had
technical issues before. I'mteasing her lovingly, that's
what I call my mom,troublemaker. But all the time
when she was in her. My mom hadAlzheimer's for 16 years. And
(13:10):
she has a long road, I get it. Iget it. Very long, very long. So
Sue, it's great to meet you andhave you here and I your your
background in journalism, andyou know, in newspapers, and
that that's an interesting pivotinto poetry. From you know, I
(13:31):
mean, what kind of journalism doyou how do you come to this
obviously, with you have someexperience with dementia or
Alzheimer's? And so what's yourtrajectory here?
Sue Fagalde Lick (13:41):
I was a poet long before I went to work for
newspapers, but a girl has towork make a living right.
Susie Singer Carter (13:49):
Art seldom pays.
Sue Fagalde Lick (13:51):
No kidding.
Yeah, no, I worked fornewspapers for quite a while and
but I'm got an MFA in CreativeWriting at age 51. And I'm back
into poetry and fiction andcreative nonfiction. My husband
had Alzheimer's. He was a bitolder than me. But he started in
(14:12):
2002, we started seeingsymptoms, and I recognized it
because my grandfather haddementia. And I did a lot of
research and a lot of writingabout it back when he was sick.
And, you know, it was a wholeheartbreaking thing. And then
sure enough, my husband camedown with it, and spent seven
years at home caring for himbefore he went up the two years
(14:36):
and in a series of differentinstitutions.
So I wrote, I was writing a lotof poetry at that time, I was
also journaling a lot. And thepoetry book got published first.
But now the memoir is coming outnext month, and I don't know
(14:59):
we'll be sharing that. Oh,Story.
Susie Singer Carter (15:01):
Exciting.
That's exciting.
Congratulations. Thank you.
Yeah, yeah. It's it's very, veryinspiring that you got your,
your degree at 51. And, youknow, as you know, the
documentary that we're doing, nocoach throw people in so much of
the of the issues are come fromour inherent ageism. Right. And
(15:23):
so you know, that people arejust supposed to start winding
down, even if they're healthyand feeling good, and, you know,
motivated, but you know, and Ilove hearing those stories of
new chapter, new chapters, newchapters, that's what it's
about, you know, it's thecuriosity of life, right?
Sue Fagalde Lick (15:45):
I'm still winding up. But you know, me
too. I was getting my master's,my husband was getting more and
more sick. I'm having more andmore troubles with his dementia.
And so, you know, I remembergraduation ceremony, I looked at
myself in the mirror and said,What am I going to do with this?
(16:06):
They can see what's happening,and he's going down a whole
other track? am I actually goingto be able to use my degree, but
wonderful,
Susie Singer Carter (16:14):
the irony of that of your, of you
enhancing your capacity ofintellect? And as he's losing
part of it? Correct. Right. Sothere's the irony of that. So
well, I love this. So so how, Ihave a question for all of you.
So you, I think about becausewhen I was making my movie, my
(16:37):
mum and the girl about my mom,and it was with Valerie Harper,
who plays my mom in it, and Iremember being encouraged by
people who what I would tell thestory, the spirit, this lovely
anecdote about these threedesperate women, and I thought,
This is so beautiful. And thenpeople would say, You should do
a film and I thought, Oh, justwhat the world needs is another
(16:57):
film about Alzheimer's. Right?
And I did, I really thought thatthat was really my, my thought
was like, who's gonna want towatch this? And
(17:49):
How do you look at that, youknow, and say, because I'm
curious, there's a lot of booksabout Alzheimer's, but they're
all different. Because I've reada lot of all of yours. And, and
I and I love them. And they alltouch me in a different way.
Right. So but I want to hearyour all three of your
perspectives. Sue?
Sue Fagalde Lick (18:10):
No. But um, when I was trying to market my
memoir, which had a differenttitle at that time, I called it
Alzheimer's. Age agents andeditors all said, yeah, there's
nobody wants to do another,another disease memoir. Now,
especially dementia, it's beendone. But if you want to do a
how to we're all for that.
Butyou know, they basically saidthe market is closed, which
(18:33):
every story is different. Andthere's different angles to be
taken. So I kept going.
Susie Singer Carter (18:42):
Good for you. That's interesting that
they said there's a how to isall I feel the opposite. I say
this a lot. I've been noticingthis a lot. There's so many
caregiver advocates who areregurgitating the same how to?
Yes. Right. And I think that,you know, how many influencers
(19:04):
do we need? Who are saying thesame things over and over? Yeah.
Which is, I mean, listen, it'sgreat. I didn't have that. When
my mom started. I didn't evenknow I made every mistake in the
book. So I didn't know what todo. And there wasn't a lot of
there wasn't any podcast forsure. And you know, and I read,
(19:25):
I think I read Greg, Greg. Whatwas his name O'Brien did from
Mars. Yo, bro. Yeah, no, yeah,he was. He was our guest. And I
read that book. And that waslike the one book that I knew to
read at the time. And it wasdifficult because it was coming
from his head, right. And it waslike, it was scary for me
(19:46):
because I knew what wascoming.It was a bit it was
daunting. But you know, I findit interesting that because like
you just said to all the storyall stories are different. But
the How to is the same? Prettymuch?
Ann Campanella (20:02):
Yes, I have to say, when I was caring for my
mom, I was looking for books toread, because that is how I've
gotten through life, I look formemoirs to teach me how to not
just survive, but to thrive indifferent situations. And so, at
that time, which was quite a fewyears ago, it was over 20 years
(20:25):
ago, there just were very fewmemoirs, and I really wanted to
know, how does somebody navigateall these small little things
that come, you know, the changesthat she can't drive, or she's
putting on her clothesbackwards? Or, you know, just
saying weird things? You know,how do you navigate that, and I
(20:45):
felt like I could learn andteach that in my own memoir. It
was like, I can just show theexperience, it's like, you can
teach by showing rather thantelling. And so I feel like
memoirs are such a great way tolearn.
Susie Singer Carter (21:02):
I agree.
I'd say it the same with anarrative film. Yeah, right.
Yes, I can. And I decided to doit. authentically, like, but
also not depressingly, you know,to, to do it. I mean, Marianne
seen the film. So shall I thinkyou agree, Marian, that, you
know, it's real. And I show somenot so pleasant things, but not,
(21:22):
not, you know, I'm not, I wasn'tbeing gratuitous. But I wanted
to be real. But then I wanted toshow the love and then the
humor. And, and, you know, theirony of it all. And that, you
know, when you lean in, then youfigure out how to work at each
stage. And it and it's very,it's it's much more peaceful and
(21:44):
rewarding. And for both sides,for a caregiver and careGivee as
they were. So what do you think,Marianne?
Unknown (21:57):
Well, when I wrote my book, it was in the early 2000s.
And I couldn't get anybody topay attention to it. I sent it
out to agents and editors, youknow, far and wide, I have a big
stack of rejection letters frompeople who never read the book
didn't even ask for one page.
And it was so discouraging. ButI knew that it was really
important. There weren't a lotof books about Alzheimer's,
(22:19):
dementia, especially memoir, onefiction, at that time in early
2000s. And I did a lot ofresearch, and I read what was
available. So I couldn'tunderstand why it was so taboo,
you know, and so that's when Idecided that I would self
publish it, which, which I did.
(22:39):
And I'm really glad that I did.
And now there's more and morebooks, because it also authors
we get people submitting, youknow, to us every week,
sometimes more than one personwith a new book or something.
And, you know, we recently are,we are going through a change in
in our platform, and how we'regoing to be doing things in the
future, because we just have avery small team, and nobody gets
(23:02):
paid. And it just became morethan we could handle. So one of
the things that we decided toput the brakes on are those
caregiver guides, and we'relooking for more memoir based
stories and fiction, and we'rereally looking for stories,
stories about how someone wentthrough a situation and how they
(23:22):
survived it and thrived throughit. And those are kind of
sometimes hard to find. Andthere's always the different
situations like a woman takingcare of her, her mom, another
woman taking care of herhusband, a man taking care of
his dad, somebody's taking careof their grandparents, you know,
and then everybody brings adifferent type of socio economic
Marianne Sciucco (23:48):
flavor to their situation. So that's why
it's always so different andwhere people live. That's
another one. We look for authorswho are outside of the United
States, we have an authorrepresenting every continent,
except for Antarctica. In ourcollection. Wow. Yeah. We have
from everywhere in the globe.
Yeah, at least one or two fromyou know, Australia, Europe.
(24:11):
Asia, we have like from fromAfrica. So yeah, so and those
are hard to find. And we canonly work with the books that
people have written. So that'sanother thing. And sometimes
people say, Well, why don't wehave a book from this or this
type of situation? While wehaven't found that yet, so
(24:32):
somebody has to write it. Mmhmm.
Susie Singer Carter (24:36):
Yeah. It's interesting, because the culture
when I was to when I was workingclosely with Alzheimer's, Los
Angeles here when I was doingour film, and, you know, I
trained as a volunteer just toreally get my head around, you
know, I wanted to be very, veryinvolved in the community. And,
you know, I really learned youdon't think about it at first is
that the cultural differences infamilies and how you approach
(25:01):
things, you know, and how youapproach this particular
illness, which carries still thestigma and embarrassment. And I
mean, I, I was, I had so muchshame from my mom in the
beginning, because I didn't knowhow people would perceive her.
(25:23):
And I didn't know how to protecther. And I thought that, you
know, at least I could protecther from feeling
embarrassed, by by, you know,that kind of thing. And then I
learned that people are actuallymore gracious than I gave them
credit for. And people were verysupportive when she was living
(25:47):
with me and loved her and learnto navigate the disease and
understood it, but, you know,and wanted to understand it. So
I found that there was more ofthose kinds of people than the
others. You know, how do you
Don Priess (26:00):
how do you Yeah, how do you walk that line of when
you're writing a memoir, yourown personal experience about
the person you love, of beinghonest and forthright? And then
also protecting their dignity?
And certain personal things?
Like where how do you draw thatline? Is it just something by
feel? Or do what's that journey?
Ann Campanella (26:21):
That is a great question, Don, I'll answer just
from my perspective, I was verylucky because my mother was a
journalist also. And I knew thatshe was very passionate about
bringing to light things thatour communities needed to know
about. And so even as she wasdescending into Alzheimer's, I
(26:45):
knew that, while she would beembarrassed in the moment, if
she knew that this was going on,I knew she wouldn't be
supportive in the long run. It'slike where she is now. I know,
she's looking down going, youknow, you go girl, this is
exactly what our world needs. SoI'm very fortunate, but it is,
(27:06):
it's a tough line. Because, youknow, I always I wanted to be
very real. And also like, Suze,you said, I wanted to show, you
know, the joys and the griefsand the strangeness and the
oddities. But I felt like beingtrue to the actual experience
was the best way to honor her.
Susie Singer Carter (27:27):
Yes. Yeah.
Have you found books that aresubmitted that crossed that
line? And that and
Marianne Sciucco (27:34):
Yeah, it may have been? Yeah, yeah, it's not,
I don't think recently. Butearly on, there were many books,
I mean, only accept maybe 60% ofthe books that come our way, for
various reasons. But there werebooks that had come out that
were not helpful at all thatwere, you know, not presenting
(27:58):
the person and
Don Priess (27:59):
sensationalizing it, but not with no Yeah, values.
Marianne Sciucco (28:03):
They were like a hard No, because we we don't
want to put on like rose coloredglasses and be like Pollyanna
ish about what this journey islike. Because for some people,
it's truly brutal. You know, soSo we, but we also don't want
to, you know, we don't want totake advantage of somebody
(28:23):
else's situation to try it's notlike clickbait or something like
that. We exactly want to stayaway from that.
Yeah. Sue did you find the samepath or journey?
Don Priess (28:37):
Yeah,
Sue Fagalde Lick (28:37):
Yeah, um, I gotta say, it goes two different
ways. I think with the poetry Iwas able to respect the line
between personal and private,you can close so many things in
a poem that you can't so much ina memoir, but I think I trampled
all over it in the memoir andwrote things that I'm sure my
(28:57):
husband would have been totallyembarrassed about, you know,
because toward the end, I mean,things that killed him were very
private, very personal. But theywere important to and dealt with
important issues. So I did getread about them. You it's you
know, it's the it's the ugly andthe beautiful all together.
Don Priess (29:19):
Yeah. Your anything you regret. Yeah. Anything you
regret or would say now I reallywish I that wasn't there.
Sue Fagalde Lick (29:27):
No, there's things I regret about his care
but there's no not about thebook.
Marianne Sciucco (29:35):
It's a disservice to say not to share
you know, the the union Yang thebalance of it being all of the
joys and then there's also theheartbreak and can't - it's not
fair to the readers or to thecaregivers, because some people
would think that there would besomething wrong with them, like,
you know, oh, well, why am Inot, you know, thrilled to have
(29:55):
this happen to me and it? Can Ican't handle it in what's wrong
with me. It's my failure. Andpeople are I feel that right
feel like that anyway, you know,so they have to really see the
ugly things that go on and howpeople can sometimes be, too.
Yeah. Yeah, I was
Sue Fagalde Lick (30:17):
going, I was very honest in mind that, um,
you know, I was in therapy andhad some mental health
difficulties during the journey,you know, definitely was
struggling with that, too.
Because it's, you know, youcan't just be calm and generous
all the time, sometimes itreally makes you nuts. That
needs to, needs to be shown theexhaustion,
Susie Singer Carter (30:39):
I think, Sue that I think, Sue that be I
and I say this a lot, that beinga caregiver to a spouse, or a
partner, it's got a, you know,has its own set of of issues
that a mother daughter doesn'thave, or a mother or, you know,
a parent child doesn't have youhave that added, you know, level
(31:01):
of relationship that, you know,is, I don't know, because I
haven't been in it. But I knowthat that, that just watching
heart, like watching objectivelysay like, with my stepdad and my
mom, my stepfather being verymuch in denial about my
mother's, you know, decline andgetting frustrated with her and
(31:27):
as opposed to feelingcompassion, you know, and, and,
and I would say to him, youknow, Georgie mom has
Alzheimer's, no, she stopped,she's fine. She's fine. You
know, and, and so and I've heardthat from a lot of our guests.
And so, you know, I, I know thatthere's, it's, it's, I think it
(31:48):
adds a whole nother set of, of,you know, emotional baggage and,
and, you know, it's a heavylift, I think, I'm not trying to
compare, it's apples andoranges. But I do think there's
a bit more complication, that asa spouse, you know, and
everything, your intimacy,everything, you know, and I've
(32:10):
had, we've had some beautifulinterviews with the Most
Gracious partners where, youknow, their husband was like,
I can't remember her name. Now,Don, the the opera singer whose
husband had dementia, and he wascalling. Like, no, what is it
eight, the phone sex thing?
Like, what is it called thephone number? I forgot what it's
(32:34):
like, whatever. Don, you know,the 601.
Numbers. Yeah,
Don Priess (32:42):
I know all about, that's my expertise.
Susie Singer Carter (32:46):
Anyway, she was so gracious because she knew
that he, he loved her. He justwas, it wasn't the same person.
So she helped him with thecause. She helps you. I just,
I'm not telling I'm bastardizingthe story, but she's told it so
well. And it was so touchingbecause she loved him. And she
knew that it was just, he was adifferent man. It was she said
(33:09):
it was he had regressed to adifferent man. And he and she
just wanted him to be happy. AndI thought, Wow, what a what an
amazing love story. You know,and, and, and similar stories
like that from, you know,couples, and I find that very
intriguing. You know, very, verymuch so. So, I, I understand
(33:36):
that you, you know, having to goto therapy and having to deal
with that. It's a lot. It's alot, you know, because, yeah,
it's just a lot. So,
Don Priess (33:48):
Memoirs to poetry, there's a difference, isn't
there? A big I assume there's abig difference. Is there a
preference? What are thedifferences? And how do you you
know, what, what's what's andwhat how do you start to write
poetry about it? You know, it's,it's, I mean, poetry can be all
things. It's not always flowersand happy, obviously. But is do
(34:08):
you have a preference and whatare the
Unknown (34:10):
Have you heard of Sylis Plath. Not a happy woman.
Susie Singer Carter (34:19):
anyone.
Don Priess (34:21):
That's open to anyone.That's open for for all
three. So whoever wants to divein?
Sue Fagalde Lick (34:24):
Let me start with that. Um, I guess which one
I do depends on my mood.
Sometimes I just barf out whathappened in streams of prose.
And, you know, later we'll seewhat we're going to make of it.
But poetry I can you can takejust a nugget of a scene
something you see something, youhear that? It's like, oh, and
you build on it, you know, thetree outside my husband's window
(34:47):
at the nursing home and as itchanged through the seasons. And
he thought we could go out thereand play and yeah, just little
moments that you He's got, oh, Icould do something with that and
build a poem around it. Were youwith a man with a memoir, you
got to build a whole story. It'sa moment you're capturing,
(35:11):
capturing a moment.
Unknown (35:16):
Yeah, well, I'll add to that Sue, because
like Sue, I was a poet before Iwas a memoirist. In fact, I
wrote poetry even as early asfirst grade. So I was processing
the world through poetry. It wasjust, it was a way for me to
take in mostly difficultmoments, most of my poetry,
(35:38):
people would say, Oh, you're thegrief poet. But they're not
necessarily all sad. There's,you know, there's a mix of
emotions in the poems, but itwas a way and it has been a way
for me to really process themost, the deepest, most painful
experiences, you know, whichhappens with Alzheimer's or
(35:59):
dementia. When you're seeingsomebody change, or you know,
you just don't expect thetransformations that are
happening. And it's a way toprocess. And as Sue said, You
take these moments, and I foundmy poetry books actually, were
kind of like, these littleislands of serenity in the midst
(36:21):
of this raging storm. And sothose little islands, were just
a wonderful way to remember bothsomething good and something
hard. So
Susie Singer Carter (36:38):
Oh, it's a beautiful way to frame it.
That's beautiful. I like that.
Yeah. Very pretty. You said youwere going to do some readings.
I would love to have somereadings, if you would, if you
would be. Are you ready to dothat? Yeah. Are you? Yeah, I,
Unknown (36:58):
I don't have any poetry in this book, because I didn't
write poetry but I do want todidn't want to read some by some
of the other authors.
Susie Singer Carter (37:06):
Okay, and then then anuncio read as well,
right? Sure. I'm excited. Thisis gonna be great.
Unknown (37:14):
Did you want me to go first? Yes,
Susie Singer Carter (37:16):
please.
Okay. I'm going to read this.
Tell us who Who are you reading?
Yeah.
Unknown (37:22):
This poem was written by Mary crescendo, one of our
authors who originally wrote aplay called Planet A, and then
that became a book. She's doneextensive work in the
Alzheimer's community. And shewrote her poems. The two of the
poems in the book were writtenabout people that she met with
Alzheimer's dementia in herwork. So it was It wasn't wasn't
(37:46):
apparent or anything. This oneis called Dorothy. My first date
brought me a gardenia. We wentto a party together. I spent my
days as a child in Virginiaamong blossoms and the
precession of farmhands,cotillion balls and grand
marches. And those required hatsand gloves spotless, like the
(38:08):
color of cotton in the field.
Today, my daughter carries outcardboard boxes filled with my
clothes, my bubbles, the colorof Mardi Gras in the final bill.
If she could have managed, shewould have kept me with her in
her home. But it was impossiblefor both of us. Sometimes it
simply is, no matter how muchsomeone loves you, it's better
(38:32):
this way for both of us. No morebills, no more useless guilt, no
more suffering on both sides.
This day was as inevitable asthe tinge of a white flower when
it is around for too long. Sobut these are the types of you
(38:57):
know, poetry poems that youwould find that you will find in
this book of people writing, youknow about the different
hardships and heartbreakingexperiences, as well as some of
the you know, happier times. Andyou'll build some of them.
You'll laugh.
Susie Singer Carter (39:14):
Yeah. And did you have one that you can
share?
Unknown (39:19):
Sure, yes. This one is from my collection called what
flies away, which tells thestory of my mother's descent
into Alzheimer's. At the sametime, I was trying to become
pregnant and eventually did havekind of a miracle birth of a
child at the age of 40. This iscalled Child mother. She used to
(39:43):
grip the rudder, auburn hairslicked cheeks round and pink is
to rubber balls. Duck CDL in thesale swept across this canvas
wagging for a moment like theskin on her jaw. Now she's still
Here's a photo of the bay, hereyes pools of Hazel. She grips
(40:05):
my hand whispers, I think I'llwalk down to the lake. Her voice
soft as an eddy of wind againstmy neck. We push through the
glass doors into a grey sea ofcement. Cars and bands Bob like
anchored boats. Her eyes calm asmissed. She points. What do you
(40:28):
see? I ask. squinting at alamppost. A small tree in the
distance. She waves. Why It'sdad, of course. But he doesn't
see me. wetness slides down theripple of her cheek. Will you
take me to him? I placed my armacross the mast of her
shoulders. Walk with her intothe Mirage.
Susie Singer Carter (40:53):
Gosh, yeah.
Yeah, you did? Yeah, you did.
Yeah.
Unknown (41:01):
Lake lover and love sailing? And it just. Yeah,
bring it makes me think aboutit. Yeah,
Susie Singer Carter (41:10):
it's put it like both of these, that you
just read Marianne and Ann. Likeit is very emotive. Right. I
think that in a poetry frame, inpoetry, it's, it's quite. It's
very impactful in terms of, youknow, in such a short in it in
(41:32):
Haiku as it were, right. It'slike very, very quick. And, and
yet it gets right to the heart.
Especially binder, and both ofthose experiences are completely
different. Right. And yeah, theMirage is beautiful. And then,
you know, the flower of thetinge of the flower, and, and
(41:52):
the inevitability of all thatwhich, you know, I, anybody
who's been a caregiver knowsthat. That moment where you're
packing up the life of yourloved one, right, and you're
packing it up. Yeah. And you'redownsizing it and it's like,
it's brutal, so brutal. It'sreally hard. Yeah, powerful.
Unknown (42:22):
I guess our hope is that these points will touch the
people who are living thesituation now or have
experienced it, and they canjust flip through and find a
poem that relates to theirexperience and just have a
little bit of a release ofemotion or a little joy or cry a
little bit or whatever it isthat they need, but hopefully
(42:45):
they won't feel so alone.
Don Priess (42:47):
Yeah, and it also humanizes the caregiving
experience because you know, youthink you know you don't when
you see somebody caring forsomebody else, these are not the
thoughts and moments you justthink of what the physical thing
is happening right at thatmoment. Where all this other
stuff is, is swimming up here.
Unknown (43:07):
So it's it's there
Don Priess (43:09):
it's beautiful. So
Unknown (43:12):
yeah, I'm going to share one that's also in my my
book gravel road ahead. But it'sin the new book to sister
Alzheimer's wife. And I'm youknow, I'm addressing other women
who are going through what whatI've gone through. Sister
Alzheimer's wife, I know you,even though we have never met. I
(43:32):
know the fear every time heforgets something he used to
know. Like how to make asandwich or where the salad
dressing goes. I know you lieawake at night watching him
hallucinate biting monsters inthe bed or not remembering who
you are. It gets lost and peeson the rug. You're so tired. You
want to run away. I know youweep where he cannot hear in the
(43:56):
car the garage on the toiletseat, and hurry to answer his
calls for help. Turn on the TVor button his shirt. Well the
house needs work. Lawns aren'tmowed and the oil lights been on
in the car for weeks. I know youwatch the money go as you pay
bills you never paid before.
Doctors car repair and soon thenursing home. married but not a
wife anymore. You miss kissingand sex and wine soap talks.
(44:20):
sharing memories only youremember now. Oh, sister, I know
you feel alone, that no oneunderstands the way it is that
he's disappearing bit by bit.
Even if he looks the same as healways did. And it's not fair.
Not fair. Not effing fair. Butyou promised so you stay. Oh,
(44:41):
sister, Alzheimer's wife. Iknow. I rode that ride from
beginning to end plastered inplace by centrifugal force to
stop than a wobbled off alone.
Dizzy and sick to my stomach.
Yes. But as staggered on, and sowill you. Oh
Susie Singer Carter (44:58):
god, that's good. That's good. That's really
a thing.
Don Priess (45:04):
I mean, three completely different angles on
the same in the same world that,you know. And they're literally
like, what they're, they're,like literally looking at a
painting they're looking at tome, they they're like paintings
to me. As opposed to movies, youknow, it's, it literally is that
it just evokes that in your mindeven if you don't know who you
(45:26):
know. I mean, when you said youknow, sharing memories that only
you You still remember
Susie Singer Carter (45:30):
exactly how you answered every question that
I was talking about before aboutright? You just said that you'd
set it in that poem aboutmissing the sex and the and the
wine soaked conversations andall that stuff. And that you,
you know, there you were. Andthen, and of course, what do I
(45:54):
relate to? I relate to thewobbling away at the end, you
know, it is just that feeling oflike, what am I just been
through? You know, and how am Istill standing like, all of this
makes me very emotional becauseit, it's, it resonates so much
it touches deep and hits reallydeeply. Yeah,
Unknown (46:17):
I really believe that if you allow yourself to go deep
into those difficult emotions,it will allow you to feel more
joy, also, because the time is100 When I was yes, the times
when I was numb, and I couldn'tfeel anything. But when I let
myself really feel the pain.
Then the next moment, I would beamazed by the special moment
(46:39):
that just happened. Right?
Don Priess (46:44):
Yeah, it's because you protect yourself. Yeah,
often, you're just protectingyourself. You'd like I'm just
gonna shut it off. And like yousaid, you can't feel anything
and that's not a good place tobe. Right?
Susie Singer Carter (46:56):
It's not i i again, back to Sue's poem like
you know, I one of the thingswhen when you were talking
Annabeth is like person likelike those moments that if you
just those really hard momentslike I always remember going to
see my mom and being thecheerleader going in and doing
the dog and pony show for herright. Hi, Mommy, your favorite
(47:16):
daughter's here, Dan, Dan Dan todance. Right. And then I would
I'd hugger. And then I would cryover her shoulder. But she
didn't know it. And then I waittill it went away. And then I
pushed that because I didn'twant her to see me cry. Because
I know that would hurt her feelit would hurt her because she
wouldn't want to see me cry.
Yeah. So I didn't let her see mecry. Even when she was dying. I
(47:39):
didn't cry in front of her.
Because I didn't want her tofeel scared or sad for me.
Right? Because I know how she Iknow that inside her there was
mom. Yeah. And that would hurt.
So I was very careful with that.
But when you said that you wouldgo in your car and cry. Boy, did
I do that? Oh, yeah.
Unknown (48:00):
Yeah. And yeah, when, when you're together, you're
sorting through the things thatI can't talk about that I can't
talk about that that will upsethim or he won't understand. So
you say okay, what am I willfocus on but my brain can talk
about him mostly. Right.
Susie Singer Carter (48:15):
Right. Good thing, I have my tissue box
close by folks. So what's
Don Priess (48:23):
Yeah, what makes a poem and I don't want to get
into a whole class here. But youknow, a lot of people think oh,
well, it right. You know, thisline rhymes with that rot line.
And there's a pattern and thenthere's but there's not, you
know, all of these werecompletely different. Yeah. You
know, why is it a poem asopposed to just a little short
story? We you know, what, isthere a delineation between the
(48:46):
two, for us? People who have noclue.
Susie Singer Carter (48:51):
We're uncultured writers that we are
right here. I second thatemotion.
Unknown (48:58):
They don't have to rhyme these days, for sure. Part
of it is imagery. usingmetaphors and similes and
picking up something a color ofsound. Something that will
resonate with readers. Some ofit is rhythm. You know, there's
mostly they don't rhyme thesedays, they can. But you don't
(49:20):
want to be thinking so long. Youwant it to flow. So it's it's
the use of language. It's moreintense language, so many
different types of poems. Yeah,yes, there's, there are prose
poems that are like a paragraph,but they're very condensed ly
written and, again, as you said,so they either focus on an image
(49:42):
or a way of language or therhythm or and again, there's
just, you can approach a poemfrom a million different
directions. But yeah, what'sdifferent? I mean, I would say
usually, it's a containedmoment. or a time that you're
(50:03):
sort of,
Susie Singer Carter (50:05):
you know, snapshot, just like a snapshot?
Yeah, yes.
Unknown (50:10):
Yeah, I'm not trying to tell the entire story. The whole
story might come out in thatlittle actually.
Don Priess (50:17):
Yours was was a years it was a longer period of
time as opposed to this moment.
Yet it was a snapshot.
Susie Singer Carter (50:24):
My two people would say why this needs
to be a real movie, we want toknow what happens. And I say,
but we don't know what happens.
This is it. This is thesnapshot, this is this is what
happened. This is what happened.
That's what I want to tell thisis, this, this is as powerful.
This is powerful as it is. Sothat's what I wanted to do. I
love that you're bringing poetryinto the zeitgeist again,
(50:46):
because I know when I wasgrowing up, like poetry was very
popular, you know, and people,all my, my peers, we got poetry
books, and we read poetry, andwe, you know, but I don't find a
lot of people talking aboutpoetry, it at least, you know,
within the three generationsthat I know, which are my
(51:06):
daughters are each area into oneGen Z Mellon millennial, and Gen
X, right. So we have the threeof us, and then I don't, you
don't hear a lot about poetry.
So I find I think it's reallyinteresting and lovely that you
are bringing it back and that itis a powerful art. And, and I
like that, like how do you howare? How is the appetite that
(51:30):
you find out there? Like Marian,what do you is there an appetite
for poetry? Or do you? I'm justwondering, because it is such a
powerful?
Unknown (51:44):
I mean, from my limited limited experience, yes. Because
the response to our doing thepoetry reading last year, which
is where this book was, wasborn. I had, it's kind of a
funny story. I'll be honestabout it. So what happened was,
we wanted to do this virtualpoetry reading for National
(52:05):
Poetry Month. And we were goingto invite the authors in our
collaborative, who were poetsthat we knew of that had
published books of poetry thatwere in our collection. So there
were 13 of them. So I made up amailing list for those 13
people. And I wrote up thisinvitation, and I sent the
invitation out. And the nextthing I know, the very first
(52:25):
response I get, it was actuallyit was from the author. I just
read Mary credenza. Oh, I'm soexcited. Thank you for inviting
me to be in the poetry reading.
And I'm thinking to myself, Maryprogenza, why is she in the
poetry reading? She did itright? Write a book of poetry.
And so I looked at my email, Isent it out to everybody on our
list. Oh, my God, it wasn't 13People now. So I was like,
(52:48):
hopefully now what am I going todo all these? How many people
are going to spring forward? Sothere were like, 3040 people
that wanted to come to thepoetry reading and
more than that, it was crazy.
Yeah, there were like over 100,who signed up? Yeah, 60 showed
up. It was it was crazy. We hada live one for two hours. Yeah,
we did two hours. Wow. Webecause we let people read. And
(53:11):
then when I had to make it intoa podcast, so it's in two
episodes, because it was toolong, like my system wouldn't
write couldn't manage it. So Ihad to break it in half. We have
it on YouTube. It's one it's inits entirety. So people could
watch it on YouTube. But yeah,and so now, we put out the call
for the poets to submit thepoems to the books, and we have
(53:34):
a well over 100 poems in thisbook. And we get we allowed them
to submit up to three poems, andwe took them all. And they come
from a very, very wide varietyof experiences, where some of
the poets are very prominent,well known, award winning, have
done many books, written many,many poems. And then there were
(53:57):
other ones who, you know, wasjust somebody that took care of
their mother, and they wrote onepoem, and they won't write
another poem, but that was whatthey did. So it just runs the
gamut of all of that, which Ithink is really, really cool.
Don Priess (54:13):
Let's see, seems like it would lend itself to to
what's going on to that, youknow, you know, everything about
short and fast and quick andcondensed. And it seems, you
know, even for social media, itseems like it's a natural,
right, or, you know, that thisto to come back and say yeah,
this is something that is, youknow, that that could become
really something that you could,you could put it out there in so
(54:35):
many different ways. You know,not just in a book or not just
you know, as one long video, butjust, you know, in bytes.
Susie Singer Carter (54:43):
Yeah, agreed. Yeah.
Unknown (54:45):
And a lot of poets are publishing poetry on social
media.
Among the younger folks, slampoetry has become very popular
server performance poetry that'sit's almost like rap. You know,
and yeah, that is one word, theword to perform it not just
(55:06):
putting a book right for me itis becoming very popular. So
yeah, it's another aspect of it,
Susie Singer Carter (55:12):
that's a spoken word is definitely has
not lost, it's been around. AndI remember because we were
developing a series on spokenword, like in the early 2000s,
you know, and there and it's,it's quite, I mean, it's an art,
it is an art, there are some,like, you know, a good spoken
word artist as opposed to not agood spoke. I mean, they are
(55:34):
power, they're powerful. I mean,they aren't, can move you, they
can move the hell out of you.
They are incredible artists, youknow, in fact, we have a woman
who's doing it doing the creditthis or giving us the rights to
do this song of use her song inour movie for No Country for Old
people for the credits, which isbasically spoken word on a blues
track. I mean, she's incredible.
(55:59):
She's sees one of a kind artist,you know, and we're just
thrilled with it, because it ispowerful. When you've got that
kind of communication, it says alot. And there's metaphor all
over the place.
Don Priess (56:15):
But also hearing it from from the writer themselves.
Because even if you're not aperformer, it's just inherently
there that you have the emotionthat you know, something that
you can't tell somebody else howto do that. It's just there.
It's visceral. And it's comingfrom, you know, not only from
your hands, but from your heart.
And but you can hear it. I mean,when you were reading it, you
(56:35):
could feel it. You could, youknow, so yeah, it just feels
like it lends itself to what'sgoing on today. Yeah,
Susie Singer Carter (56:42):
we love it.
So, so when are we so it'scoming? Let's see, when are we
doing it? When there's your tellus when the when the your pot,
your poetry readings are goingto be happen? I know it's
happening in June. Yes,
Unknown (56:58):
June 3. So it's coming up next week. Okay, um, so June
first, and it'll be backpaperback and digital on Amazon
and eventually, on the other,you know, book publishing
platforms. But can I readanother poem? I had one poem, I
was gonna
Susie Singer Carter (57:18):
ask you to read one more. Oh, you read. But
I just before but I just want tosay before you I want to just
say you're going to hear thispodcast, it's going to already
have been published, you'regonna go to Amazon, you're gonna
get yo happy able to geteverything that you want. Are
you doing the audio version? Byany chance? No. That's Oh,
(57:39):
please do great idea. I don'tknow who's gonna say so myself.
Well, we don't actors. Okay.
When we,
Unknown (57:49):
some someone else can take the lead on that project.
And sue you.
Don Priess (57:54):
So your book is also coming out next month? It's now
June 25 25th. No
Unknown (57:59):
way out of this. Yeah.
Seuss book is a great book.
Susie Singer Carter (58:06):
Awesome.
And what else do you want? Isthere anything we can we can
promote for you? And then we'regoing to have you guys, because
I know I'm going to be cryingalready again. So I want to get
all the good work out. Now.
Another
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 Alz. A real and really
positive podcast that takes adeep dive into everything
(00:25):
Alzheimer's. The Good, the Bad,and everything in between. And
now, here are your hosts SusieSinger, Carter, and me, Don
Priess
Susie Singer Carter (00:39):
Hello, everybody. I'm Susie Singer
Carter.
Don Priess (00:43):
And I'm Don Priess.
And this is love conquers allcalls. Hello, Susan.
Susie Singer Carter (00:46):
Hello, Donald. How's it going? today?
We're having a great day. We'rehaving a great day having a
super fun day. You know, it's itseems to be even though we don't
know when people will belistening to this. But for us,
it's Friday, which meansabsolutely nothing, because we
work all weekend anyway. Soyeah, Happy Friday. Happy Friday
(01:07):
to you.
Don Priess (01:08):
Yeah. So what are you looking forward to doing?
Susie Singer Carter (01:13):
No, I don't have anything to look forward
to. That's really exciting. Ithink. No, I mean, it's boring,
because we're talking about thesame stuff about some tedious
work that we're doing on the onthe documentary. But again, we
you know, by the time you hearthis, maybe we'll be finished,
(01:33):
maybe we'll have distributionthat we can announce. But as of
right now, we're working with alegal team to clear everything
so we don't get sued for youknow, in expose days, a little
background on expose days, wedidn't know is that if you don't
clear every little minutiae ofyour project, you you leave
yourself very vulnerable tolawsuits, and for slander,
(01:57):
liability, all those yummythings. So you have to hire a
very expensive team of lawyersthat, you know, forensic ly go
through the project with you andmake you do lots of changes and
things so that you're protected.
And then you get insurance and,and it all costs a lot of money.
So it does
Don Priess (02:17):
show every question.
Sometimes we like have aquestion for them. We go, oh,
no, no, no. If we type thisemail and ask them this
question, that's gonna be $400.
So let's not ask that questionright now.
Honestly, like, yeah, it'sreally, it's really scary. Like,
you know, we've raised all thismoney ourselves, and we think,
Oh, we have plenty for our mixesand the pretty stuff, all the
(02:41):
polishing that we need. And thenit's like, you get a bill for,
you know, a half a week and it's$2,500. What How did that
happen? Where did that happen?
We didn't even we talked for twominutes. Yeah, it's super
expensive, but they're they'rereally they're great. They're
very good God for them becausein the long run down the line,
this is cheap insurance, if youwill, because you know Yeah,
(03:03):
everyone's litigious so yeah,and even though we're not just
have to have enough for mybodyguard, I have to get enough
for my bodyguard.
Susie Singer Carter (03:14):
Susie's
Don Priess (03:14):
Susie's gonna need a bodyguard. You know, because the
lobby is coming after her afterthey see this be even because
they don't want to they don'twant everyone to know what's
going on. So yeah, look at
Susie Singer Carter (03:30):
the new Aaron Bronco is on? He's on the
prowl. Okay, no, I don't care.
This is my purpose. What are wegoing to do? Yeah, you know,
Don Priess (03:42):
just go for it.
That's what I see. Yeah. Bebold, big and bold. So yeah. So
if you if you are, if you haveany need for a tax deduction,
we're still in the market for alittle bit more support for our
project after we've got our lastbill from the lawyer. So please,
you know, head on over to thenational consumer voice and
(04:03):
we're on their front page, andyou will find a way to make a
donation if you're so inclined,and we would be very so grateful
for your help is 100% taxdeductible, because they are our
fiscal sponsor. And so it's awin win. It is a win win. All
right, and no one else is a winwin. It's actually a win win
(04:26):
win.
Susie Singer Carter (04:30):
Today that's a win.
Don Priess (04:32):
We're loaded with guests and they're fantastic.
And I'll tell you more aboutthem. I'll right now. Marianne
Schuco is not a nurse who writesbut a writer who happens to be a
nurse, a nurse who has cared forhundreds of dementia patients
over a 20 year career. Her novelblue hydrangeas and Alzheimer's
love story is a testament to thepower of love in the face of
(04:54):
this heart wrenching disease.
Ironically, two years after hernovels publication, she started
living her own story when herstepfather was diagnosed with
mixed dementia. She's become aprolific writer, and also
launched her own podcast,untangling Alzheimer's and
dementia and all authorspodcast, and she is the co
founder of the nonprofit all'sauthors.com, a global community
(05:15):
of over 300 writers who arewriting all about dementia from
their own personal experience.
And Campanella is the managerand director of vols authors,
and as a former magazine andnewspaper editor. She's the
author of two award winningmemoirs and four collections of
poetry. Her writing has appearedin newspapers, magazines,
(05:37):
literary journals, and onlinesites all around the world. Her
first memoir, motherhood Lostand Found tells the story of her
mother's descent intoAlzheimer's at the same time and
was trying to become a motherand dealing with a series of
miscarriages. This memoir wasnamed one of the best
Alzheimer's books of all time,by book authority two years in a
(05:57):
row. Su frugality lick is aprolific writer of books, poems,
essays and articles. She hasbeen nominated for the Pushcart
Prize and both fiction andnonfiction and won first prize
and Willamette writers case, noawards for poetry, a former
president of the Silicon Valleybranch of California writers
club, and writers on the edge.
Sue is co founder of the CentralCoast chapter of Willamette
(06:20):
writers and former President ofthe Oregon poetry Association.
She has taught workshops inarticle writing, creative
writing, and publishing acrossthe country. And coming June 25
2024, Sue is releasing herlatest work no way out of this a
memoir about Sue's Alzheimer'sjourney with her husband. Today,
they're all here to talk aboutpoetry for the dementia journey,
(06:41):
a beautiful anthology thatsprung from an online event
featuring over 30 poets duringNational Poetry Month. And to
find out more about thiswonderful creation. Let's say
hello to Marianne Schuco. AndCampanella, and sue for galtee.
Lick. Hello, hello.
Susie Singer Carter (06:59):
Wow. Hi, ladies. Thank you for coming
here. I'm so impressed with allI like all of your biographies
are so impressive, and I don'teven know where to begin, are
talking about your poetry. Butthere's so much to talk about
with everything else you'vedone, that it's extraordinary
(07:19):
office jump in, if you don'tmind and just say I let since
since Marianne, I feel as is thetroop leader here because I know
her the best I'll say, Mary, andhow did you? How did you meet
Anne and Sue? And how does thiscollaboration of poetry come
together with the three of you?
Well,
Marianne Sciucco (07:38):
Well, it this was a long time in the making. I
started AlzAuthors and back in2015 was to other current
members of our team. And hejoined us about a year or so
after we got started, shediscovered us somehow you can
probably tell that better than Iam. But she discovered us and I
(07:59):
wanted her book to be a part ofalso author's mission. And, you
know, yes, definitely, andjoined us in that way. But she
also wanted to do a little bitmore and volunteered the use of
her editorial and writing skillsto help out, you know, and then
next thing, you know, she's onthe board. And so she's been a
(08:20):
board member for many, manyyears now, and is kind of a
guiding force in many of ourprojects. She works on the
custom caregiver collections.
And right now we're redoing,we're getting a brand new
website. So she's been likebehind the scenes helping to
finesse that.
And then sue came into theorganization maybe a couple of
years ago was her book ofpoetry, gravel road ahead.
(08:43):
That's usually how author joinsus is, you know, they discover
that we spotlight these booksand promote them for free.
Pretty much we now charge asmall submission fee. But in the
past, we didn't. So peoplecouldn't would join us and kind
of not, not really, I don'tthink understanding the depths
(09:04):
that they could become involvedin. It's not just a place to
park your book, but it's acommunity of other authors and
other caregivers. So Sue joinedus and
came to some of our events andwas, you know, flooding around
the edges. And ironically, shewrote to me a few months back,
telling me that she had justcompleted her term as president
(09:26):
of the poetry club that she wasin and she had some free time.
And did we have any projects?
And I said, Yeah, I'm puttingtogether a poetry book. And I
knew that she had publishedseveral. So I was like, Would
you like to help us publish ourpoetry anthology? She said, Oh,
yeah, she jumped right on it.
And she worked really hardputting putting it all together
(09:46):
for us. So we appreciate that somuch, because you know, we all
work for free here at allauthors. We're a nonprofit, and
nobody gets a paycheck. But weall have really strong My
desires and passions to tellcaregiver stories and to help
people that are currently on ajourney.
Susie Singer Carter (10:07):
Absolutely, I mean, it's so incredible what
you do, because you created thiscommunity of writers and
literature that, you know, isdirectly in support of
caregivers and, and inparticular dementia. But
caregivers in general, really,and and, and it's, it's
extraordinary, because, youknow, like, like all of us, we
(10:29):
all, like our podcasts, youknow, it's all done as a labor
of love. And it comes out of ourown experiences. And it's and,
and it's what we bring to thetable is our experiences. And
that's what is powerful, in thatsense, powerful, and all your
books, and you've really,really, you know, branded
yourself as, as the thedestination for these kinds of,
(10:51):
of stories. You know, I hear itfrom people all the time, like,
oh, you know, you know thatpeople from all authors, can you
get me an introduction? Youknow, so you really have created
a really beautiful brand. foryourself. Yeah. And I'm, I think
it's fantastic. And so well, andwhy don't you tell us a little
(11:14):
bit about yourself as well. Sojust where you know, how you how
you ramped up to this positionwith ALZAuthors.
Ann Campanella (11:22):
I would love to.
I really found all's authors tobe a place that was exactly
where I wanted to be. Becauseafter my mother had Alzheimer's,
the saint for 14 years, and itwas, when I was in my 30s, early
30s, it began and I was soisolated. And I really, and I
(11:43):
was a writer, and I was isolatedand caring for my mother. And
the one thing I wanted to do wasto reach out to others and find
ways to just make more of acommunity for people who were
experiencing this kind of loss,and just going through the
craziness of what I experienced.
(12:06):
And so all these authors justwelcomed me, Marianne and Jean
and Vicki, who were part of itat the time, and Katherine at
the time, they were just sohappy to have somebody else to
help. And I just wanted to pushthe word that there were
resources out there for peoplewho needed them. And of course,
(12:27):
I also wanted people to read mybook, because I felt like it
could help others who had whowere isolated themselves, and
were in a similar caregivingsituation. So it has it's just
been a wonderful community. Andwe've just become such close
friends through this process,which is really another
blessing.
Susie Singer Carter (12:48):
Yes, absolutely. And Sue, where did
sue go? Troublemakers back,okay. She we had we had
technical issues before. I'mteasing her lovingly, that's
what I call my mom,troublemaker. But all the time
when she was in her. My mom hadAlzheimer's for 16 years. And
(13:10):
she has a long road, I get it. Iget it. Very long, very long. So
Sue, it's great to meet you andhave you here and I your your
background in journalism, andyou know, in newspapers, and
that that's an interesting pivotinto poetry. From you know, I
(13:31):
mean, what kind of journalism doyou how do you come to this
obviously, with you have someexperience with dementia or
Alzheimer's? And so what's yourtrajectory here?
Sue Fagalde Lick (13:41):
I was a poet long before I went to work for
newspapers, but a girl has towork make a living right.
Susie Singer Carter (13:49):
Art seldom pays.
Sue Fagalde Lick (13:51):
No kidding.
Yeah, no, I worked fornewspapers for quite a while and
but I'm got an MFA in CreativeWriting at age 51. And I'm back
into poetry and fiction andcreative nonfiction. My husband
had Alzheimer's. He was a bitolder than me. But he started in
(14:12):
2002, we started seeingsymptoms, and I recognized it
because my grandfather haddementia. And I did a lot of
research and a lot of writingabout it back when he was sick.
And, you know, it was a wholeheartbreaking thing. And then
sure enough, my husband camedown with it, and spent seven
years at home caring for himbefore he went up the two years
(14:36):
and in a series of differentinstitutions.
So I wrote, I was writing a lotof poetry at that time, I was
also journaling a lot. And thepoetry book got published first.
But now the memoir is coming outnext month, and I don't know
(14:59):
we'll be sharing that. Oh,Story.
Susie Singer Carter (15:01):
Exciting.
That's exciting.
Congratulations. Thank you.
Yeah, yeah. It's it's very, veryinspiring that you got your,
your degree at 51. And, youknow, as you know, the
documentary that we're doing, nocoach throw people in so much of
the of the issues are come fromour inherent ageism. Right. And
(15:23):
so you know, that people arejust supposed to start winding
down, even if they're healthyand feeling good, and, you know,
motivated, but you know, and Ilove hearing those stories of
new chapter, new chapters, newchapters, that's what it's
about, you know, it's thecuriosity of life, right?
Sue Fagalde Lick (15:45):
I'm still winding up. But you know, me
too. I was getting my master's,my husband was getting more and
more sick. I'm having more andmore troubles with his dementia.
And so, you know, I remembergraduation ceremony, I looked at
myself in the mirror and said,What am I going to do with this?
(16:06):
They can see what's happening,and he's going down a whole
other track? am I actually goingto be able to use my degree, but
wonderful,
Susie Singer Carter (16:14):
the irony of that of your, of you
enhancing your capacity ofintellect? And as he's losing
part of it? Correct. Right. Sothere's the irony of that. So
well, I love this. So so how, Ihave a question for all of you.
So you, I think about becausewhen I was making my movie, my
(16:37):
mum and the girl about my mom,and it was with Valerie Harper,
who plays my mom in it, and Iremember being encouraged by
people who what I would tell thestory, the spirit, this lovely
anecdote about these threedesperate women, and I thought,
This is so beautiful. And thenpeople would say, You should do
a film and I thought, Oh, justwhat the world needs is another
(16:57):
film about Alzheimer's. Right?
And I did, I really thought thatthat was really my, my thought
was like, who's gonna want towatch this? And
(17:49):
How do you look at that, youknow, and say, because I'm
curious, there's a lot of booksabout Alzheimer's, but they're
all different. Because I've reada lot of all of yours. And, and
I and I love them. And they alltouch me in a different way.
Right. So but I want to hearyour all three of your
perspectives. Sue?
Sue Fagalde Lick (18:10):
No. But um, when I was trying to market my
memoir, which had a differenttitle at that time, I called it
Alzheimer's. Age agents andeditors all said, yeah, there's
nobody wants to do another,another disease memoir. Now,
especially dementia, it's beendone. But if you want to do a
how to we're all for that.
Butyou know, they basically saidthe market is closed, which
(18:33):
every story is different. Andthere's different angles to be
taken. So I kept going.
Susie Singer Carter (18:42):
Good for you. That's interesting that
they said there's a how to isall I feel the opposite. I say
this a lot. I've been noticingthis a lot. There's so many
caregiver advocates who areregurgitating the same how to?
Yes. Right. And I think that,you know, how many influencers
(19:04):
do we need? Who are saying thesame things over and over? Yeah.
Which is, I mean, listen, it'sgreat. I didn't have that. When
my mom started. I didn't evenknow I made every mistake in the
book. So I didn't know what todo. And there wasn't a lot of
there wasn't any podcast forsure. And you know, and I read,
(19:25):
I think I read Greg, Greg. Whatwas his name O'Brien did from
Mars. Yo, bro. Yeah, no, yeah,he was. He was our guest. And I
read that book. And that waslike the one book that I knew to
read at the time. And it wasdifficult because it was coming
from his head, right. And it waslike, it was scary for me
(19:46):
because I knew what wascoming.It was a bit it was
daunting. But you know, I findit interesting that because like
you just said to all the storyall stories are different. But
the How to is the same? Prettymuch?
Ann Campanella (20:02):
Yes, I have to say, when I was caring for my
mom, I was looking for books toread, because that is how I've
gotten through life, I look formemoirs to teach me how to not
just survive, but to thrive indifferent situations. And so, at
that time, which was quite a fewyears ago, it was over 20 years
(20:25):
ago, there just were very fewmemoirs, and I really wanted to
know, how does somebody navigateall these small little things
that come, you know, the changesthat she can't drive, or she's
putting on her clothesbackwards? Or, you know, just
saying weird things? You know,how do you navigate that, and I
(20:45):
felt like I could learn andteach that in my own memoir. It
was like, I can just show theexperience, it's like, you can
teach by showing rather thantelling. And so I feel like
memoirs are such a great way tolearn.
Susie Singer Carter (21:02):
I agree.
I'd say it the same with anarrative film. Yeah, right.
Yes, I can. And I decided to doit. authentically, like, but
also not depressingly, you know,to, to do it. I mean, Marianne
seen the film. So shall I thinkyou agree, Marian, that, you
know, it's real. And I show somenot so pleasant things, but not,
(21:22):
not, you know, I'm not, I wasn'tbeing gratuitous. But I wanted
to be real. But then I wanted toshow the love and then the
humor. And, and, you know, theirony of it all. And that, you
know, when you lean in, then youfigure out how to work at each
stage. And it and it's very,it's it's much more peaceful and
(21:44):
rewarding. And for both sides,for a caregiver and careGivee as
they were. So what do you think,Marianne?
Unknown (21:57):
Well, when I wrote my book, it was in the early 2000s.
And I couldn't get anybody topay attention to it. I sent it
out to agents and editors, youknow, far and wide, I have a big
stack of rejection letters frompeople who never read the book
didn't even ask for one page.
And it was so discouraging. ButI knew that it was really
important. There weren't a lotof books about Alzheimer's,
(22:19):
dementia, especially memoir, onefiction, at that time in early
2000s. And I did a lot ofresearch, and I read what was
available. So I couldn'tunderstand why it was so taboo,
you know, and so that's when Idecided that I would self
publish it, which, which I did.
(22:39):
And I'm really glad that I did.
And now there's more and morebooks, because it also authors
we get people submitting, youknow, to us every week,
sometimes more than one personwith a new book or something.
And, you know, we recently are,we are going through a change in
in our platform, and how we'regoing to be doing things in the
future, because we just have avery small team, and nobody gets
(23:02):
paid. And it just became morethan we could handle. So one of
the things that we decided toput the brakes on are those
caregiver guides, and we'relooking for more memoir based
stories and fiction, and we'rereally looking for stories,
stories about how someone wentthrough a situation and how they
(23:22):
survived it and thrived throughit. And those are kind of
sometimes hard to find. Andthere's always the different
situations like a woman takingcare of her, her mom, another
woman taking care of herhusband, a man taking care of
his dad, somebody's taking careof their grandparents, you know,
and then everybody brings adifferent type of socio economic
Marianne Sciucco (23:48):
flavor to their situation. So that's why
it's always so different andwhere people live. That's
another one. We look for authorswho are outside of the United
States, we have an authorrepresenting every continent,
except for Antarctica. In ourcollection. Wow. Yeah. We have
from everywhere in the globe.
Yeah, at least one or two fromyou know, Australia, Europe.
(24:11):
Asia, we have like from fromAfrica. So yeah, so and those
are hard to find. And we canonly work with the books that
people have written. So that'sanother thing. And sometimes
people say, Well, why don't wehave a book from this or this
type of situation? While wehaven't found that yet, so
(24:32):
somebody has to write it. Mmhmm.
Susie Singer Carter (24:36):
Yeah. It's interesting, because the culture
when I was to when I was workingclosely with Alzheimer's, Los
Angeles here when I was doingour film, and, you know, I
trained as a volunteer just toreally get my head around, you
know, I wanted to be very, veryinvolved in the community. And,
you know, I really learned youdon't think about it at first is
that the cultural differences infamilies and how you approach
(25:01):
things, you know, and how youapproach this particular
illness, which carries still thestigma and embarrassment. And I
mean, I, I was, I had so muchshame from my mom in the
beginning, because I didn't knowhow people would perceive her.
(25:23):
And I didn't know how to protecther. And I thought that, you
know, at least I could protecther from feeling
embarrassed, by by, you know,that kind of thing. And then I
learned that people are actuallymore gracious than I gave them
credit for. And people were verysupportive when she was living
(25:47):
with me and loved her and learnto navigate the disease and
understood it, but, you know,and wanted to understand it. So
I found that there was more ofthose kinds of people than the
others. You know, how do you
Don Priess (26:00):
how do you Yeah, how do you walk that line of when
you're writing a memoir, yourown personal experience about
the person you love, of beinghonest and forthright? And then
also protecting their dignity?
And certain personal things?
Like where how do you draw thatline? Is it just something by
feel? Or do what's that journey?
Ann Campanella (26:21):
That is a great question, Don, I'll answer just
from my perspective, I was verylucky because my mother was a
journalist also. And I knew thatshe was very passionate about
bringing to light things thatour communities needed to know
about. And so even as she wasdescending into Alzheimer's, I
(26:45):
knew that, while she would beembarrassed in the moment, if
she knew that this was going on,I knew she wouldn't be
supportive in the long run. It'slike where she is now. I know,
she's looking down going, youknow, you go girl, this is
exactly what our world needs. SoI'm very fortunate, but it is,
(27:06):
it's a tough line. Because, youknow, I always I wanted to be
very real. And also like, Suze,you said, I wanted to show, you
know, the joys and the griefsand the strangeness and the
oddities. But I felt like beingtrue to the actual experience
was the best way to honor her.
Susie Singer Carter (27:27):
Yes. Yeah.
Have you found books that aresubmitted that crossed that
line? And that and
Marianne Sciucco (27:34):
Yeah, it may have been? Yeah, yeah, it's not,
I don't think recently. Butearly on, there were many books,
I mean, only accept maybe 60% ofthe books that come our way, for
various reasons. But there werebooks that had come out that
were not helpful at all thatwere, you know, not presenting
(27:58):
the person and
Don Priess (27:59):
sensationalizing it, but not with no Yeah, values.
Marianne Sciucco (28:03):
They were like a hard No, because we we don't
want to put on like rose coloredglasses and be like Pollyanna
ish about what this journey islike. Because for some people,
it's truly brutal. You know, soSo we, but we also don't want
to, you know, we don't want totake advantage of somebody
(28:23):
else's situation to try it's notlike clickbait or something like
that. We exactly want to stayaway from that.
Yeah. Sue did you find the samepath or journey?
Don Priess (28:37):
Yeah,
Sue Fagalde Lick (28:37):
Yeah, um, I gotta say, it goes two different
ways. I think with the poetry Iwas able to respect the line
between personal and private,you can close so many things in
a poem that you can't so much ina memoir, but I think I trampled
all over it in the memoir andwrote things that I'm sure my
(28:57):
husband would have been totallyembarrassed about, you know,
because toward the end, I mean,things that killed him were very
private, very personal. But theywere important to and dealt with
important issues. So I did getread about them. You it's you
know, it's the it's the ugly andthe beautiful all together.
Don Priess (29:19):
Yeah. Your anything you regret. Yeah. Anything you
regret or would say now I reallywish I that wasn't there.
Sue Fagalde Lick (29:27):
No, there's things I regret about his care
but there's no not about thebook.
Marianne Sciucco (29:35):
It's a disservice to say not to share
you know, the the union Yang thebalance of it being all of the
joys and then there's also theheartbreak and can't - it's not
fair to the readers or to thecaregivers, because some people
would think that there would besomething wrong with them, like,
you know, oh, well, why am Inot, you know, thrilled to have
(29:55):
this happen to me and it? Can Ican't handle it in what's wrong
with me. It's my failure. Andpeople are I feel that right
feel like that anyway, you know,so they have to really see the
ugly things that go on and howpeople can sometimes be, too.
Yeah. Yeah, I was
Sue Fagalde Lick (30:17):
going, I was very honest in mind that, um,
you know, I was in therapy andhad some mental health
difficulties during the journey,you know, definitely was
struggling with that, too.
Because it's, you know, youcan't just be calm and generous
all the time, sometimes itreally makes you nuts. That
needs to, needs to be shown theexhaustion,
Susie Singer Carter (30:39):
I think, Sue that I think, Sue that be I
and I say this a lot, that beinga caregiver to a spouse, or a
partner, it's got a, you know,has its own set of of issues
that a mother daughter doesn'thave, or a mother or, you know,
a parent child doesn't have youhave that added, you know, level
(31:01):
of relationship that, you know,is, I don't know, because I
haven't been in it. But I knowthat that, that just watching
heart, like watching objectivelysay like, with my stepdad and my
mom, my stepfather being verymuch in denial about my
mother's, you know, decline andgetting frustrated with her and
(31:27):
as opposed to feelingcompassion, you know, and, and,
and I would say to him, youknow, Georgie mom has
Alzheimer's, no, she stopped,she's fine. She's fine. You
know, and, and so and I've heardthat from a lot of our guests.
And so, you know, I, I know thatthere's, it's, it's, I think it
(31:48):
adds a whole nother set of, of,you know, emotional baggage and,
and, you know, it's a heavylift, I think, I'm not trying to
compare, it's apples andoranges. But I do think there's
a bit more complication, that asa spouse, you know, and
everything, your intimacy,everything, you know, and I've
(32:10):
had, we've had some beautifulinterviews with the Most
Gracious partners where, youknow, their husband was like,
I can't remember her name. Now,Don, the the opera singer whose
husband had dementia, and he wascalling. Like, no, what is it
eight, the phone sex thing?
Like, what is it called thephone number? I forgot what it's
(32:34):
like, whatever. Don, you know,the 601.
Numbers. Yeah,
Don Priess (32:42):
I know all about, that's my expertise.
Susie Singer Carter (32:46):
Anyway, she was so gracious because she knew
that he, he loved her. He justwas, it wasn't the same person.
So she helped him with thecause. She helps you. I just,
I'm not telling I'm bastardizingthe story, but she's told it so
well. And it was so touchingbecause she loved him. And she
knew that it was just, he was adifferent man. It was she said
(33:09):
it was he had regressed to adifferent man. And he and she
just wanted him to be happy. AndI thought, Wow, what a what an
amazing love story. You know,and, and, and similar stories
like that from, you know,couples, and I find that very
intriguing. You know, very, verymuch so. So, I, I understand
(33:36):
that you, you know, having to goto therapy and having to deal
with that. It's a lot. It's alot, you know, because, yeah,
it's just a lot. So,
Don Priess (33:48):
Memoirs to poetry, there's a difference, isn't
there? A big I assume there's abig difference. Is there a
preference? What are thedifferences? And how do you you
know, what, what's what's andwhat how do you start to write
poetry about it? You know, it's,it's, I mean, poetry can be all
things. It's not always flowersand happy, obviously. But is do
(34:08):
you have a preference and whatare the
Unknown (34:10):
Have you heard of Sylis Plath. Not a happy woman.
Susie Singer Carter (34:19):
anyone.
Don Priess (34:21):
That's open to anyone.That's open for for all
three. So whoever wants to divein?
Sue Fagalde Lick (34:24):
Let me start with that. Um, I guess which one
I do depends on my mood.
Sometimes I just barf out whathappened in streams of prose.
And, you know, later we'll seewhat we're going to make of it.
But poetry I can you can takejust a nugget of a scene
something you see something, youhear that? It's like, oh, and
you build on it, you know, thetree outside my husband's window
(34:47):
at the nursing home and as itchanged through the seasons. And
he thought we could go out thereand play and yeah, just little
moments that you He's got, oh, Icould do something with that and
build a poem around it. Were youwith a man with a memoir, you
got to build a whole story. It'sa moment you're capturing,
(35:11):
capturing a moment.
Unknown (35:16):
Yeah, well, I'll add to that Sue, because
like Sue, I was a poet before Iwas a memoirist. In fact, I
wrote poetry even as early asfirst grade. So I was processing
the world through poetry. It wasjust, it was a way for me to
take in mostly difficultmoments, most of my poetry,
(35:38):
people would say, Oh, you're thegrief poet. But they're not
necessarily all sad. There's,you know, there's a mix of
emotions in the poems, but itwas a way and it has been a way
for me to really process themost, the deepest, most painful
experiences, you know, whichhappens with Alzheimer's or
(35:59):
dementia. When you're seeingsomebody change, or you know,
you just don't expect thetransformations that are
happening. And it's a way toprocess. And as Sue said, You
take these moments, and I foundmy poetry books actually, were
kind of like, these littleislands of serenity in the midst
(36:21):
of this raging storm. And sothose little islands, were just
a wonderful way to remember bothsomething good and something
hard. So
Susie Singer Carter (36:38):
Oh, it's a beautiful way to frame it.
That's beautiful. I like that.
Yeah. Very pretty. You said youwere going to do some readings.
I would love to have somereadings, if you would, if you
would be. Are you ready to dothat? Yeah. Are you? Yeah, I,
Unknown (36:58):
I don't have any poetry in this book, because I didn't
write poetry but I do want todidn't want to read some by some
of the other authors.
Susie Singer Carter (37:06):
Okay, and then then anuncio read as well,
right? Sure. I'm excited. Thisis gonna be great.
Unknown (37:14):
Did you want me to go first? Yes,
Susie Singer Carter (37:16):
please.
Okay. I'm going to read this.
Tell us who Who are you reading?
Yeah.
Unknown (37:22):
This poem was written by Mary crescendo, one of our
authors who originally wrote aplay called Planet A, and then
that became a book. She's doneextensive work in the
Alzheimer's community. And shewrote her poems. The two of the
poems in the book were writtenabout people that she met with
Alzheimer's dementia in herwork. So it was It wasn't wasn't
(37:46):
apparent or anything. This oneis called Dorothy. My first date
brought me a gardenia. We wentto a party together. I spent my
days as a child in Virginiaamong blossoms and the
precession of farmhands,cotillion balls and grand
marches. And those required hatsand gloves spotless, like the
(38:08):
color of cotton in the field.
Today, my daughter carries outcardboard boxes filled with my
clothes, my bubbles, the colorof Mardi Gras in the final bill.
If she could have managed, shewould have kept me with her in
her home. But it was impossiblefor both of us. Sometimes it
simply is, no matter how muchsomeone loves you, it's better
(38:32):
this way for both of us. No morebills, no more useless guilt, no
more suffering on both sides.
This day was as inevitable asthe tinge of a white flower when
it is around for too long. Sobut these are the types of you
(38:57):
know, poetry poems that youwould find that you will find in
this book of people writing, youknow about the different
hardships and heartbreakingexperiences, as well as some of
the you know, happier times. Andyou'll build some of them.
You'll laugh.
Susie Singer Carter (39:14):
Yeah. And did you have one that you can
share?
Unknown (39:19):
Sure, yes. This one is from my collection called what
flies away, which tells thestory of my mother's descent
into Alzheimer's. At the sametime, I was trying to become
pregnant and eventually did havekind of a miracle birth of a
child at the age of 40. This iscalled Child mother. She used to
(39:43):
grip the rudder, auburn hairslicked cheeks round and pink is
to rubber balls. Duck CDL in thesale swept across this canvas
wagging for a moment like theskin on her jaw. Now she's still
Here's a photo of the bay, hereyes pools of Hazel. She grips
(40:05):
my hand whispers, I think I'llwalk down to the lake. Her voice
soft as an eddy of wind againstmy neck. We push through the
glass doors into a grey sea ofcement. Cars and bands Bob like
anchored boats. Her eyes calm asmissed. She points. What do you
(40:28):
see? I ask. squinting at alamppost. A small tree in the
distance. She waves. Why It'sdad, of course. But he doesn't
see me. wetness slides down theripple of her cheek. Will you
take me to him? I placed my armacross the mast of her
shoulders. Walk with her intothe Mirage.
Susie Singer Carter (40:53):
Gosh, yeah.
Yeah, you did? Yeah, you did.
Yeah.
Unknown (41:01):
Lake lover and love sailing? And it just. Yeah,
bring it makes me think aboutit. Yeah,
Susie Singer Carter (41:10):
it's put it like both of these, that you
just read Marianne and Ann. Likeit is very emotive. Right. I
think that in a poetry frame, inpoetry, it's, it's quite. It's
very impactful in terms of, youknow, in such a short in it in
(41:32):
Haiku as it were, right. It'slike very, very quick. And, and
yet it gets right to the heart.
Especially binder, and both ofthose experiences are completely
different. Right. And yeah, theMirage is beautiful. And then,
you know, the flower of thetinge of the flower, and, and
(41:52):
the inevitability of all thatwhich, you know, I, anybody
who's been a caregiver knowsthat. That moment where you're
packing up the life of yourloved one, right, and you're
packing it up. Yeah. And you'redownsizing it and it's like,
it's brutal, so brutal. It'sreally hard. Yeah, powerful.
Unknown (42:22):
I guess our hope is that these points will touch the
people who are living thesituation now or have
experienced it, and they canjust flip through and find a
poem that relates to theirexperience and just have a
little bit of a release ofemotion or a little joy or cry a
little bit or whatever it isthat they need, but hopefully
(42:45):
they won't feel so alone.
Don Priess (42:47):
Yeah, and it also humanizes the caregiving
experience because you know, youthink you know you don't when
you see somebody caring forsomebody else, these are not the
thoughts and moments you justthink of what the physical thing
is happening right at thatmoment. Where all this other
stuff is, is swimming up here.
Unknown (43:07):
So it's it's there
Don Priess (43:09):
it's beautiful. So
Unknown (43:12):
yeah, I'm going to share one that's also in my my
book gravel road ahead. But it'sin the new book to sister
Alzheimer's wife. And I'm youknow, I'm addressing other women
who are going through what whatI've gone through. Sister
Alzheimer's wife, I know you,even though we have never met. I
(43:32):
know the fear every time heforgets something he used to
know. Like how to make asandwich or where the salad
dressing goes. I know you lieawake at night watching him
hallucinate biting monsters inthe bed or not remembering who
you are. It gets lost and peeson the rug. You're so tired. You
want to run away. I know youweep where he cannot hear in the
(43:56):
car the garage on the toiletseat, and hurry to answer his
calls for help. Turn on the TVor button his shirt. Well the
house needs work. Lawns aren'tmowed and the oil lights been on
in the car for weeks. I know youwatch the money go as you pay
bills you never paid before.
Doctors car repair and soon thenursing home. married but not a
wife anymore. You miss kissingand sex and wine soap talks.
(44:20):
sharing memories only youremember now. Oh, sister, I know
you feel alone, that no oneunderstands the way it is that
he's disappearing bit by bit.
Even if he looks the same as healways did. And it's not fair.
Not fair. Not effing fair. Butyou promised so you stay. Oh,
(44:41):
sister, Alzheimer's wife. Iknow. I rode that ride from
beginning to end plastered inplace by centrifugal force to
stop than a wobbled off alone.
Dizzy and sick to my stomach.
Yes. But as staggered on, and sowill you. Oh
Susie Singer Carter (44:58):
god, that's good. That's good. That's really
a thing.
Don Priess (45:04):
I mean, three completely different angles on
the same in the same world that,you know. And they're literally
like, what they're, they're,like literally looking at a
painting they're looking at tome, they they're like paintings
to me. As opposed to movies, youknow, it's, it literally is that
it just evokes that in your mindeven if you don't know who you
(45:26):
know. I mean, when you said youknow, sharing memories that only
you You still remember
Susie Singer Carter (45:30):
exactly how you answered every question that
I was talking about before aboutright? You just said that you'd
set it in that poem aboutmissing the sex and the and the
wine soaked conversations andall that stuff. And that you,
you know, there you were. Andthen, and of course, what do I
(45:54):
relate to? I relate to thewobbling away at the end, you
know, it is just that feeling oflike, what am I just been
through? You know, and how am Istill standing like, all of this
makes me very emotional becauseit, it's, it resonates so much
it touches deep and hits reallydeeply. Yeah,
Unknown (46:17):
I really believe that if you allow yourself to go deep
into those difficult emotions,it will allow you to feel more
joy, also, because the time is100 When I was yes, the times
when I was numb, and I couldn'tfeel anything. But when I let
myself really feel the pain.
Then the next moment, I would beamazed by the special moment
(46:39):
that just happened. Right?
Don Priess (46:44):
Yeah, it's because you protect yourself. Yeah,
often, you're just protectingyourself. You'd like I'm just
gonna shut it off. And like yousaid, you can't feel anything
and that's not a good place tobe. Right?
Susie Singer Carter (46:56):
It's not i i again, back to Sue's poem like
you know, I one of the thingswhen when you were talking
Annabeth is like person likelike those moments that if you
just those really hard momentslike I always remember going to
see my mom and being thecheerleader going in and doing
the dog and pony show for herright. Hi, Mommy, your favorite
(47:16):
daughter's here, Dan, Dan Dan todance. Right. And then I would
I'd hugger. And then I would cryover her shoulder. But she
didn't know it. And then I waittill it went away. And then I
pushed that because I didn'twant her to see me cry. Because
I know that would hurt her feelit would hurt her because she
wouldn't want to see me cry.
Yeah. So I didn't let her see mecry. Even when she was dying. I
(47:39):
didn't cry in front of her.
Because I didn't want her tofeel scared or sad for me.
Right? Because I know how she Iknow that inside her there was
mom. Yeah. And that would hurt.
So I was very careful with that.
But when you said that you wouldgo in your car and cry. Boy, did
I do that? Oh, yeah.
Unknown (48:00):
Yeah. And yeah, when, when you're together, you're
sorting through the things thatI can't talk about that I can't
talk about that that will upsethim or he won't understand. So
you say okay, what am I willfocus on but my brain can talk
about him mostly. Right.
Susie Singer Carter (48:15):
Right. Good thing, I have my tissue box
close by folks. So what's
Don Priess (48:23):
Yeah, what makes a poem and I don't want to get
into a whole class here. But youknow, a lot of people think oh,
well, it right. You know, thisline rhymes with that rot line.
And there's a pattern and thenthere's but there's not, you
know, all of these werecompletely different. Yeah. You
know, why is it a poem asopposed to just a little short
story? We you know, what, isthere a delineation between the
(48:46):
two, for us? People who have noclue.
Susie Singer Carter (48:51):
We're uncultured writers that we are
right here. I second thatemotion.
Unknown (48:58):
They don't have to rhyme these days, for sure. Part
of it is imagery. usingmetaphors and similes and
picking up something a color ofsound. Something that will
resonate with readers. Some ofit is rhythm. You know, there's
mostly they don't rhyme thesedays, they can. But you don't
(49:20):
want to be thinking so long. Youwant it to flow. So it's it's
the use of language. It's moreintense language, so many
different types of poems. Yeah,yes, there's, there are prose
poems that are like a paragraph,but they're very condensed ly
written and, again, as you said,so they either focus on an image
(49:42):
or a way of language or therhythm or and again, there's
just, you can approach a poemfrom a million different
directions. But yeah, what'sdifferent? I mean, I would say
usually, it's a containedmoment. or a time that you're
(50:03):
sort of,
Susie Singer Carter (50:05):
you know, snapshot, just like a snapshot?
Yeah, yes.
Unknown (50:10):
Yeah, I'm not trying to tell the entire story. The whole
story might come out in thatlittle actually.
Don Priess (50:17):
Yours was was a years it was a longer period of
time as opposed to this moment.
Yet it was a snapshot.
Susie Singer Carter (50:24):
My two people would say why this needs
to be a real movie, we want toknow what happens. And I say,
but we don't know what happens.
This is it. This is thesnapshot, this is this is what
happened. This is what happened.
That's what I want to tell thisis, this, this is as powerful.
This is powerful as it is. Sothat's what I wanted to do. I
love that you're bringing poetryinto the zeitgeist again,
(50:46):
because I know when I wasgrowing up, like poetry was very
popular, you know, and people,all my, my peers, we got poetry
books, and we read poetry, andwe, you know, but I don't find a
lot of people talking aboutpoetry, it at least, you know,
within the three generationsthat I know, which are my
(51:06):
daughters are each area into oneGen Z Mellon millennial, and Gen
X, right. So we have the threeof us, and then I don't, you
don't hear a lot about poetry.
So I find I think it's reallyinteresting and lovely that you
are bringing it back and that itis a powerful art. And, and I
like that, like how do you howare? How is the appetite that
(51:30):
you find out there? Like Marian,what do you is there an appetite
for poetry? Or do you? I'm justwondering, because it is such a
powerful?
Unknown (51:44):
I mean, from my limited limited experience, yes. Because
the response to our doing thepoetry reading last year, which
is where this book was, wasborn. I had, it's kind of a
funny story. I'll be honestabout it. So what happened was,
we wanted to do this virtualpoetry reading for National
(52:05):
Poetry Month. And we were goingto invite the authors in our
collaborative, who were poetsthat we knew of that had
published books of poetry thatwere in our collection. So there
were 13 of them. So I made up amailing list for those 13
people. And I wrote up thisinvitation, and I sent the
invitation out. And the nextthing I know, the very first
(52:25):
response I get, it was actuallyit was from the author. I just
read Mary credenza. Oh, I'm soexcited. Thank you for inviting
me to be in the poetry reading.
And I'm thinking to myself, Maryprogenza, why is she in the
poetry reading? She did itright? Write a book of poetry.
And so I looked at my email, Isent it out to everybody on our
list. Oh, my God, it wasn't 13People now. So I was like,
(52:48):
hopefully now what am I going todo all these? How many people
are going to spring forward? Sothere were like, 3040 people
that wanted to come to thepoetry reading and
more than that, it was crazy.
Yeah, there were like over 100,who signed up? Yeah, 60 showed
up. It was it was crazy. We hada live one for two hours. Yeah,
we did two hours. Wow. Webecause we let people read. And
(53:11):
then when I had to make it intoa podcast, so it's in two
episodes, because it was toolong, like my system wouldn't
write couldn't manage it. So Ihad to break it in half. We have
it on YouTube. It's one it's inits entirety. So people could
watch it on YouTube. But yeah,and so now, we put out the call
for the poets to submit thepoems to the books, and we have
(53:34):
a well over 100 poems in thisbook. And we get we allowed them
to submit up to three poems, andwe took them all. And they come
from a very, very wide varietyof experiences, where some of
the poets are very prominent,well known, award winning, have
done many books, written many,many poems. And then there were
(53:57):
other ones who, you know, wasjust somebody that took care of
their mother, and they wrote onepoem, and they won't write
another poem, but that was whatthey did. So it just runs the
gamut of all of that, which Ithink is really, really cool.
Don Priess (54:13):
Let's see, seems like it would lend itself to to
what's going on to that, youknow, you know, everything about
short and fast and quick andcondensed. And it seems, you
know, even for social media, itseems like it's a natural,
right, or, you know, that thisto to come back and say yeah,
this is something that is, youknow, that that could become
really something that you could,you could put it out there in so
(54:35):
many different ways. You know,not just in a book or not just
you know, as one long video, butjust, you know, in bytes.
Susie Singer Carter (54:43):
Yeah, agreed. Yeah.
Unknown (54:45):
And a lot of poets are publishing poetry on social
media.
Among the younger folks, slampoetry has become very popular
server performance poetry that'sit's almost like rap. You know,
and yeah, that is one word, theword to perform it not just
(55:06):
putting a book right for me itis becoming very popular. So
yeah, it's another aspect of it,
Susie Singer Carter (55:12):
that's a spoken word is definitely has
not lost, it's been around. AndI remember because we were
developing a series on spokenword, like in the early 2000s,
you know, and there and it's,it's quite, I mean, it's an art,
it is an art, there are some,like, you know, a good spoken
word artist as opposed to not agood spoke. I mean, they are
(55:34):
power, they're powerful. I mean,they aren't, can move you, they
can move the hell out of you.
They are incredible artists, youknow, in fact, we have a woman
who's doing it doing the creditthis or giving us the rights to
do this song of use her song inour movie for No Country for Old
people for the credits, which isbasically spoken word on a blues
track. I mean, she's incredible.
(55:59):
She's sees one of a kind artist,you know, and we're just
thrilled with it, because it ispowerful. When you've got that
kind of communication, it says alot. And there's metaphor all
over the place.
Don Priess (56:15):
But also hearing it from from the writer themselves.
Because even if you're not aperformer, it's just inherently
there that you have the emotionthat you know, something that
you can't tell somebody else howto do that. It's just there.
It's visceral. And it's comingfrom, you know, not only from
your hands, but from your heart.
And but you can hear it. I mean,when you were reading it, you
(56:35):
could feel it. You could, youknow, so yeah, it just feels
like it lends itself to what'sgoing on today. Yeah,
Susie Singer Carter (56:42):
we love it.
So, so when are we so it'scoming? Let's see, when are we
doing it? When there's your tellus when the when the your pot,
your poetry readings are goingto be happen? I know it's
happening in June. Yes,
Unknown (56:58):
June 3. So it's coming up next week. Okay, um, so June
first, and it'll be backpaperback and digital on Amazon
and eventually, on the other,you know, book publishing
platforms. But can I readanother poem? I had one poem, I
was gonna
Susie Singer Carter (57:18):
ask you to read one more. Oh, you read. But
I just before but I just want tosay before you I want to just
say you're going to hear thispodcast, it's going to already
have been published, you'regonna go to Amazon, you're gonna
get yo happy able to geteverything that you want. Are
you doing the audio version? Byany chance? No. That's Oh,
(57:39):
please do great idea. I don'tknow who's gonna say so myself.
Well, we don't actors. Okay.
When we,
Unknown (57:49):
some someone else can take the lead on that project.
And sue you.
Don Priess (57:54):
So your book is also coming out next month? It's now
June 25 25th. No
Unknown (57:59):
way out of this. Yeah.
Seuss book is a great book.
Susie Singer Carter (58:06):
Awesome.
And what else do you want? Isthere anything we can we can
promote for you? And then we'regoing to have you guys, because
I know I'm going to be cryingalready again. So I want to get
all the good work out. Now.
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