November 12, 2024 • 24 mins
What if the challenges of caregiving could transform you into a beacon of support and resilience? Join us as we welcome the remarkable Veronica Shanklin, founder of Dementia Care Warriors, who courageously shares her poignant journey of caring for her grandmother and mother, both touched by Alzheimer's and dementia. Veronica takes us into the heart of her experience, revealing the emotional and logistical hurdles she faced while transitioning from an independent life in Chicago to becoming a full-time family caregiver. She speaks candidly about the heavy toll of exhaustion, frustration, and isolation, as well as the financial burdens and feelings of resentment that arose from a lack of familial support.
Prepare to be inspired as Veronica unfolds the story behind Dementia Care Warriors, her nonprofit dedicated to uplifting caregivers through innovative support channels. From the lively support group happy hours to the energizing Revive Refresh caregiver conference, she highlights the importance of finding community and joy amidst the caregiving journey. Veronica underscores the necessity of accessing resources during Family Caregiving Month and invites you to explore DementiaCareWarriors.org for further guidance. Tune in to gain a deeper understanding of the unwavering love and dedication required in caregiving, and discover the wealth of resources available to empower those navigating similar paths.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hello everyone and welcome to the Journey Out
podcast, where we were designedto be the helping hand for
everyday people who are on theirExodus journey.
I am one of your hosts, brie.
Speaker 2 (00:10):
And I'm Antoine.
Speaker 1 (00:11):
And, as you can see, we have a very special guest
sitting in between us.
So we know that November is amonth filled with important
national holidays, in particular, national Family Caregivers
Month and National Alzheimer'sDisease Awareness Month.
So today we wanted to invite avery special guest who was a
caregiver to her grandmother andnow a caregiver for her mom who
lives with dementia, and howthat propelled her into her
(00:32):
starting her nonprofit geared tobringing assistance and
resources to family caregiverscaring for someone living with
Alzheimer's and relateddementias.
So let's hop right on in whatis home care.
How do I navigate health care?
Speaker 2 (00:44):
What do I do when I feel down and depressed?
Speaker 1 (00:47):
I'm stressed.
Am I enough?
What can I do?
What is this going to cost?
So we have Miss VeronicaShanklin.
I call her the family caregiverextraordinaire and founder of
Dementia Care Warriors.
So tell us a little bit aboutyourself and tell us about
family caregiverextraordinaire-ing, you know.
Speaker 3 (01:08):
So I am Veronica Shanklin and I am a full-time
caregiver for my mom.
I was a full-time caregiver formy grandmother and how that all
started was over 10 years ago.
I was living in Chicago, I wasa single bachelorette living my
best life.
I had a corporate job andeverything was great.
But back home my mom was takingcare of my grandmother and she
(01:31):
was kind of struggling to takecare of my grandmother who had
Alzheimer's disease.
Long story short, eventuallythere was an incident with my
grandmother and my grandmotherended up in the hospital.
She got kind of combative withmy mom and another family member
ended up in the hospital.
She got kind of combative withmy mom and another family member
ended up in the hospital and Iended up flying down to try to
help bring some stability to thesituation and that's pretty
(01:52):
much the beginning of mycaregiving journey.
Oh, wow.
And so that was again likearound 11 years ago.
Speaker 1 (01:59):
With that.
What is so cool with what youjust said?
You said your mom wascaregiving for, was that her mom
?
Wow, and so now she's in thestate where she needs you to
care for her, right, and that'sjust amazing in and of itself.
Like you know, if your mom wasin a space where she understood,
(02:20):
you know she knows what you'regoing through, even with her not
being in the state tounderstand that, and I think
that's that's totally cool.
So, with that, care for yourmom, your grandmother, what kind
of How's your caregivingjourney?
How has it been?
Kind of talk to me a little bitabout what a day in a life
looks like for a caregiver.
Speaker 3 (02:38):
OK.
So I do want to say I movedhome to help my mom with my
grandmother and then, a yearlater, my mom was diagnosed.
So then I cared for both ofthem.
Speaker 2 (02:47):
And I know you kind of went and asked a question.
But you was a bachelorette, youhad your own.
I guess life that you was on ajourney on right.
And this changed your lifeRight, so continue.
Speaker 3 (03:03):
So yeah.
so a year later my mom wasdiagnosed, so then I had both of
them at the same time and so usin charge of doctor's
appointments and when I movedhome, their diets were not very
good, very high blood pressureand swollen ankles and all that
(03:35):
kind of stuff.
So I came in and kind of fixedthe diet and just kind of
brought some stability to thesituation.
And so for the next four yearsI took care of my mom and my
grandmother at the same time mygrandmother passed in 2017.
Um and a day in the life of afamily caregiver.
I talked to a lot of caregivers, a lot of caregivers, and it's
all different.
You know, as we know, right Forme, for my mom just my mom
(03:58):
right now, it involves every day.
I'm helping her.
I get her up, I get her dressed, I comb her hair, brush her
teeth, get her breakfast, gether meals for the day, get her
meds Everything you know it'scalled the activities of daily
living Right Is what they callit in the industry and so I help
her with all those things.
Speaker 2 (04:15):
So tell me this With helping her with all those
things, I'm going to ask thequestion that probably a lot of
people won't understand but why,why did you continue to help
your mother and your grandmotherwhen, hey, you could have been
living your own life?
Speaker 3 (04:33):
It's a very good question.
You know, it was just for me itwas second nature.
It was if not me, then whoRight?
Speaker 1 (04:43):
You know and they took care of me.
Speaker 3 (04:43):
Right, you know, I mean took care of me.
Speaker 2 (04:45):
Right.
Speaker 3 (04:45):
You know, I mean, I had a great childhood, Right, I
wanted for very little, you know, and so they took care of me,
and so now is my time to takecare of them.
Speaker 1 (04:55):
I love that, and so that's not easy.
Again, like you said, you hadyour own life in Chicago.
You were doing your own thing.
Kind of what emotions as afamily caregiver do you deal
with on a day-to-day basis?
And then let's just be honest,we know it's hard, so don't hold
back, you can give it to us,even though you make it look
easy, listen we've knownVeronica for a long time.
(05:18):
She does, she makes it look soeasy.
Speaker 3 (05:21):
So emotions, I would say let's see exhaustion um,
frustration, um isolation, Umand you know, honestly, I don't
want to be honest some level ofresentment, yes, Because
(05:43):
resentment with other familymembers who don't step in, and
resentment also because, mother,why did you not set yourself up
to be taken care of?
You know, in this time of yourlife, financially Right, or
maybe there was insurance youcould have gotten, you know, or
all of those things to where itall falls on me, right.
Speaker 2 (06:05):
So I hear a lot of it's a lot of emotions in there
right.
A lot of different thoughts.
How do you deal with those intaking care of your loved one
and also maintaining youremotions in those situations?
Speaker 1 (06:19):
Right.
Speaker 2 (06:20):
Right, what is your go-to?
Speaker 3 (06:23):
I would say therapy, okay.
Okay.
That is sometimes frowned uponin our community.
I highly recommend getting agood therapist to talk through
these emotions.
Right, you know.
And also you know self-care,taking breaks and being
intentional.
It's something I preach all thetime to caregivers is being
intentional about taking breaks,taking care of yourself,
(06:44):
because it's not going to beeasy, you know, and even dealing
with this it's an ongoingjourney.
So even you know, today is agood day, tomorrow might be a
bad day, right, you know.
And understanding that that'sjust a part of the journey.
Speaker 1 (06:55):
Yeah, and then and then to, it's the, it's like the
little thing.
So you talked about likegetting her up, getting
addressed and things like that.
Most of the most of thoseemotions you're feeling in those
little acts of doing hey, mom,let's put this shirt on or let's
put these pants on, and we gotto go to the doctor, but there
is something on that table thatis getting her attention and she
(07:16):
has to touch it.
Right, it's those, it's thoselittle things, and so kind of
talk to us a little bit abouthow do you navigate through
those type of situations.
Speaker 3 (07:27):
For me, you have to understand, sometimes it's okay
to walk away Because one of ourbig things challenges right now
and it's interesting becausesometimes I'm so well-versed,
you know, as far as education,and so I know some things to
expect, right.
So I remember previously wedidn't have issues with shower
time, right, right, she was fine, she'd be getting a shower.
You know, I hear about otherpeople who have a loved one who
(07:49):
literally hasn't bathed in weeksbecause they can't get them to
bathe and we weren't havingthose issues.
But now it's harder to get herinto the shower because I don't
want to and I'm like, okay, well, you need to.
You know, kind of going backand forth and sometimes
understanding that if I'm not inthe mood and she's not in the
mood, nothing is working we'regoing to take a step back.
(08:11):
I'll be back and leave you here.
You know what I mean.
Try again later.
Try again the next day butbeing okay with knowing that
sometimes it's okay to step back.
And someone once told me youwill never win an argument with
a person with Alzheimer's.
Speaker 1 (08:25):
Right, and that's important to remember because
they're not Feelings getinvolved, right Feelings get
involved.
This is your mom, and hey look,there's a million things that
we have to do today, but also,at the same time, their world is
a lot different from ours,where it's black and white here,
it's pink and purple over there, and so we have to understand
that, and so I think that'ssuper important that you say
(08:46):
that.
Speaker 2 (08:46):
Go ahead, and so we done, went down into the journey
of a day in the life of acaregiver, right?
So when did you realize that,hey, I need to learn more about
this disease or I need resourcesto help me?
Speaker 3 (09:02):
Right, you know honestly from the beginning.
Okay, because I'm a resourceperson anyway.
So, like I said, I moved backto Dallas.
I'm at home with my mom and mygrandmother I'm not working, you
know, at this time and I'm justhome and I'm like I'm online
searching, trying to findresources.
Time and I'm just home and I'mlike I'm online searching,
trying to find resources.
I actually ended up going tothe Alzheimer's Association,
(09:23):
doing a care consultation withthem, with one of their
volunteers, and then gettingmore involved with the
Alzheimer's Association andfinding resources, you know,
here and there, but a lot of itwas searching online and not
finding much you know, and thena lot of the resources that I
did find came from being out inthe community and networking and
talking to other people.
Speaker 1 (09:44):
So like what you found, so like those little
roadblocks like that, whereyou're searching, you can't find
much.
Why do you think that is?
Why do you think, when we'relooking for these resources, we
can't find them or they're notas easily accessible for
families?
Speaker 3 (09:59):
I will say that was 10 years ago.
It has gotten better.
I will say that there are a lotmore blogs and organizations
like mine out here who aretrying to do the work to help
caregivers.
But I think it's just a process.
You know.
It grows over time.
As more people become aware ofthe disease, more people are
willing to offer resources.
(10:20):
As organizations with resourcesand money become aware of how
important this is, they start tooffer more resources, Right,
you know.
So I mean, I think over timeit's slowly getting better,
Right.
And then also there's a lot ofstigma, you know, around the
disease and a lot of denial, youknow from people who are
caregivers don't realize they'recaregivers.
(10:40):
You know, around the disease anda lot of denial you know from
people who are caregivers don'trealize they're caregivers.
You know, and don't just that Dword.
Speaker 1 (10:49):
No that's not that, In no way.
Yes, yeah, absolutely.
And so those resources howimportant do you think it is for
them to be able to access thoseresources but also have like a
village and a support systemlike around you as you kind of
navigate family caregiving as awhole?
Speaker 3 (11:08):
Very important.
I think those are the twothings that a caregiver really
needs is community and education, and even though I've been on
this journey for 10 years I'vetaken all kinds of classes, I
have certifications I still sitin on trainings or classes and
learn things.
Speaker 2 (11:24):
And.
Speaker 3 (11:24):
I'm like the world.
Speaker 2 (11:25):
The community dementia caregivers need to know
this information because itwill make your journey just a
little bit easier and I want toask about this, and I want to
ask about this the conversationwith the doctor when you learned
about that diagnosis.
What happened during that time?
How did you feel?
Speaker 3 (11:49):
Well, for my mom it was so cut and dry, it was so
not very helpful it was so Ipromise y'all.
I walked out of thatappointment when she got her
diagnosis and said I should havebeen a neurologist.
I was like because if that'sall we get, and that's all he's
(12:10):
going to, do.
Speaker 2 (12:11):
I was like I can do that, even though clearly I know
there's more to neurology thanthat.
Speaker 3 (12:15):
But just based on that experience, I was like he's
like all right, come back in.
Maybe I don't know if it wasthree months or six months.
Yeah, it was like you know,come back, and you know what.
It's interesting because I hada conversation.
We switched.
We switched doctors after thatbecause I just didn't feel you
know helpful.
Speaker 1 (12:39):
But, eventually.
Speaker 3 (12:40):
I had a conversation with a neurologist one time and
I said how does it feel to knowthat there's not really much you
can do?
You know, I mean with thisdisease like the comeback in six
months is pretty standard,right, but you can also say
there are resources to help.
Speaker 2 (12:49):
That's what I was going to ask, what you wanted to
hear.
Speaker 3 (12:51):
Yeah, I want you to give me some resources.
I want you to tell me this isnot.
You know the end.
Right, right, because even inthose early, days, my mom and I,
we still traveled, we stillwent to concerts, we still did
events.
People feel like you get thisdiagnosis and it's the end.
Go sit in a chair in the backroom somewhere.
Speaker 1 (13:07):
Right.
Speaker 3 (13:08):
Right, and that's definitely not the case.
Speaker 2 (13:10):
Right, wow, so tell me you was part of a film
Refresh my memory on that filmreal quick.
Speaker 3 (13:17):
I was a part of a film called Wine, Women and
Dementia.
Yes, it was nice and it's oneof those blogs that I found when
(13:46):
I was doing my research and herwriting was so amazing and it
was just so real and I ended upreaching out to her,
complimenting her, you know, onher writing, reposted one of her
posts and we kind of becamefriends and started
communicating.
Then, when her mom passed, shedecided she wanted to do a
documentary and go around thecountry and talk to caregivers
that she met on her journey andI was one of those caregivers.
So that is it was.
It was an amazing experience.
Speaker 1 (14:05):
I mean in that film, that film really it kind of
changed even my thought process.
I mean we go through this everyday.
We've been doing this eightyears.
You know we had the time withmy great grandmother that we had
and just seeing it fromdifferent perspectives from
everybody and kind of in thefilm, even with Kitty and kind
of what she went through.
It's just phenomenal whatfamily caregivers do as a whole
(14:26):
and I'm glad that she was ableto highlight and celebrate that
at the same time, and in that ithelped me learn that it's okay
to not feel okay.
Speaker 2 (14:34):
It's okay to be angry about the situation, it's okay
to feel how you feel, but in thesame time, hey, there's
resources out there and becauseof the person that you love,
you're taken care of.
Hey, you just get back up thenext day and put your pants on
one leg at a time and go.
Speaker 3 (14:50):
One way that Kitty and I connected was because we
were both like you got to findsome laughter some joy something
in this journey it cannot beall dark and terrible, and it's
interesting because when I firststarted this journey, all the
blogs that I saw were very sadand very dark.
Speaker 1 (15:08):
you know et cetera.
Speaker 3 (15:09):
And I'm just coming into it like, oh okay, you know
I'm not going to be like that,we're not going to find.
And I will say 10 years later,I get it.
I get why everything is so dark, but you have to be intentional
about finding moments of joy,exactly.
Speaker 1 (15:24):
Because it's tough and then if you just kind of
stay in the dark, you're nevergoing to get through it.
So with that, with theresources, you said, hey, I want
to bring extra resources andsupports to family caregivers,
just like ourselves, and youstarted Dementia Care Warriors,
which is a 501c3 nonprofitorganization.
Tell us more about that.
Speaker 2 (15:44):
Yes.
Speaker 3 (15:45):
So again I was volunteering with the
Alzheimer's Association andcoming across all of these
resources that I didn't see thecaregivers in my community
having access to or knowledge of.
So I kind of started just beingthis resource for my friends or
, you know, other people who Iknew who were on this journey,
and I started a support groupand so it started with support
(16:07):
group happy hour because, again,you know, we don't I've been to
enough support groups that werevery yeah.
So we started support grouphappy hour and we would meet at
a Mexican restaurant once amonth and over tacos and
margaritas, vent, lean on eachother, share resources and the
things that go on with supportgroups, but just in a more laid
(16:30):
back you know, environment.
So we started with the supportgroups, and that was in 2019.
And that was in 2019.
I also before I had DementiaCare Warriors or before I had
the 501c3, did an event with theAlzheimer's Association at my
church.
So we did like a conference forAfrican-American caregivers at
my church and eventually got the501c3.
(16:51):
And again, that was 2019, rightbefore the pandemic.
Speaker 2 (16:55):
Exactly, exactly.
Speaker 3 (16:59):
So one of the things that I wanted to do was a
caregiver conference, and so Icame up with Revive Refresh.
Yes, revive, refresh and thefirst Revive Refresh was going
to be in March 2020.
And, of course, march 2020 came, but Revive Refresh was going
to be a day to pour intodementia family, caregivers and
(17:19):
for caregivers, by caregivers,and all of the things that I
felt like caregivers would wantout of a conference and not your
typical caregiver conference.
So, live DJ, catered brunch,because no box lunches, a vendor
resource, fair, amazingspeakers and volunteers who love
on caregivers.
Speaker 2 (17:39):
Right.
Speaker 3 (17:39):
So that was the plan for Revive, refresh and Revive.
Speaker 1 (17:42):
Refresh is awesome yeah, I mean she, she, she have
massages going on and she man,you be having the whole nine.
So what with Revive?
Refresh, like you said, it'sthe poor.
On family caregivers, but whatdo you want them to take away
from when they leave that momentand they leave that meeting,
(18:02):
that gathering?
What do you want them to takeaway from that?
Speaker 3 (18:05):
I want them to take away knowing that they're not
alone, right.
I want them to take away theeducation that they receive from
the amazing speakers that wehad.
This year we had breakoutsessions and we had keynote
speakers, and so all the thingsthat you learn from them.
I want you to take with you andjust to know that somebody out
here cares, right, because thisis a very isolating role.
(18:26):
Yeah, you know that we're inand you also find that it's hard
.
It's hard sometimes to talk topeople who have not been here,
right?
You know like if I tell youthat my mom did something
strange.
For lack of a better word.
Right Another caregiver islikely to understand.
Speaker 1 (18:45):
Yeah, yeah.
Speaker 3 (18:47):
I had a caregiver tell me that she was telling a
friend that her husband wasdoing something and the friend
was like oh girl, I do that too.
You know, it's like it's notthe same.
Speaker 1 (18:56):
Right, right.
Yeah, I think also, too, thatcould be.
We deal with a lot of familiesand one of the big things that
they say a lot of times is he'sjust doing that because that's
how he was back in the day.
And that happens a lot, andthat's kind of where that
frustration or that isolationkind of comes from, because we
remember who they were prior tothat disease and then when they
(19:18):
start bringing in those olderparts of them, that kind of
seeps through.
You're like oh no, I know she'sjust playing or he's just
playing, and so kind of beingable to kind of understand that
and kind of combat that.
So that's great that you saidthat.
Speaker 2 (19:29):
So what I want you to do now is tell us what's next
with Dementia Care Warriors.
Speaker 3 (19:34):
What do?
Speaker 2 (19:34):
you have going on next.
Speaker 3 (19:36):
So what's next with Dementia Care Warriors?
So first, dementia CareWarriors.
Our mission is to provideresources and support to
dementia family caregivers.
And we do this through arespite scholarship program.
We do this community education,we do a monthly support group
meeting and we are forming awonderful community of dementia
family caregivers.
(19:57):
And so next month coming up isNational Family Caregiver Month,
and that's a huge month for usat Dementia Care Warriors.
It's also our birthday month,and so we do a lot for National
Family Caregiver Month, startingwith Faces of Care Warriors.
Speaker 2 (20:12):
Yes, Faces of Care Warriors.
Yes, give us the deets, hold on.
So, faces of Care Warriors iswhen.
Speaker 3 (20:18):
Nope, the first event is November 1st.
Speaker 2 (20:21):
Tell me about it, okay.
Speaker 3 (20:22):
So Faces of Care Warriors.
We do a professional photoshoot with caregivers and their
loved ones, and so this is oursecond year doing it and we
actually bring them out to aphoto studio with a photographer
.
They get dressed up, they comeand we treat them like stars,
and so then we have thesebeautiful photos and images that
are part of this photo exhibit.
(20:42):
So November 1st is the nightthat we unveil this second
installment of the Faces of CareWarriors photo exhibit.
So November 1st is the nightthat we unveil this second
installment of the Faces of CareWarriors photo exhibit.
It's also our annual fundraiserfor Dementia Care Warriors and
it's kind of a cocktail stylereception that we invite the
community out to help us honorand celebrate these caregivers,
to honor some community partnersand just have a good time and,
(21:05):
you know, come and celebrate,that's awesome.
Speaker 1 (21:08):
Now she's always just being so humble, but y'all had
to see what she did last year.
Yes, it was beautiful.
Speaker 3 (21:14):
It was amazing.
Speaker 2 (21:15):
The pictures, that was taken at the studio was
beautiful.
Everything that you put.
You go 100% all the time you do.
Speaker 1 (21:21):
She goes 100% every time, and so you really don't
want to miss that, because Ithink just the emotions that
those portraits evoked, when youwere able to see them they were
in black and white, you know soyou were actually just being
able to see them and their lovedone who was dealing with
dementia, and it's just itreally brought tears to our eyes
because we were like a lot ofthese families when was the last
(21:44):
time they were able to eventake a photo, or you know all
those different things?
So I thought it's just amazingand so y'all don't want to miss
that.
What time will it be?
On the 1st.
Speaker 3 (21:54):
So November 1st at 630 at Urban Arts Center.
And they can visit our websitefor more information.
Can I talk about the other part?
Speaker 2 (22:01):
Yeah, go ahead, Go ahead talk.
Speaker 3 (22:09):
So there's that November 1st kickoff, and then
it's a photo exhibit thattravels, and so it will also be
at Dallas Public Librariesduring the month of November at
the White Rock Branch and thePolk Wisdom Branch during the
month of November, and thenagain.
All of this ties together, sowe have an education event at
the library.
We're also doing a yoga resetevent for caregivers for
dementia family caregivers inNovember.
(22:31):
That'll be yoga and soundmeditation, DIY essential oils.
So it's just a huge month forus for dementia family
caregivers.
Speaker 1 (22:42):
So where can they find, like all the events that
you just talked about?
Where can they find all of thatand get all the resources that
they can so they can come tothose events?
Speaker 3 (22:51):
So you can find all this information on our website
at DementiaCareWarriorsorg.
Make sure you visit the websiteand you join our email list so
you can stay in the loop of allthe amazing things we have
coming up for November and justmoving forward in the future,
and also follow us on socialmedia, on Instagram and Facebook
at Care Warriors.
Speaker 1 (23:10):
Well, veronica, I thank you so much for being here
with us today and just givingus a little insight into family
caregiving.
Especially with this beingFamily Caregiving Month, we want
to make sure that they have allthe resources needed.
So, to gather all of what wetalked about today, please click
the link in our bio taking youover to our podcast website to
be able to download everythingwe discussed today transcribed
just for you, under thetranscript tab.
(23:31):
Also, please go toDementiaCareWarriorsorg so that
way you can get all theinformation that she was
discussing today, as well as getall the event information,
because that's super important.
You don't want to miss those.
If you enjoyed what you've heardtoday and would like to hear
more, please subscribe andfollow us on YouTube at the
Journey Out, and as well asfollow us on all podcast
platforms.
On our podcast website, you cansupport the Journey Out podcast
(23:53):
with a monthly donation of yourchoosing, helping us to
continue to provide theseepisodes every week.
Your contribution is more thanappreciated and we thank you.
And with that, that's a wrap ontoday's episode of the Journey
Out.
We pray that the thingsdiscussed today have been a
helping hand for you and theones you hold close, positively,
bringing you out of one seasonto the next, starting your
Exodus journey, and I thank you,ms Shanklin, for coming on.
Speaker 2 (24:17):
And I hope the knowledge that you guys got from
this podcast help you growSelf-improvement right and you
become a resource for yourfamily and also your community.
Speaker 1 (24:27):
All right, we're out, see you.
Hello everyone and welcome to the Journey Out
podcast, where we were designedto be the helping hand for
everyday people who are on theirExodus journey.
I am one of your hosts, brie.
Speaker 2 (00:10):
And I'm Antoine.
Speaker 1 (00:11):
And, as you can see, we have a very special guest
sitting in between us.
So we know that November is amonth filled with important
national holidays, in particular, national Family Caregivers
Month and National Alzheimer'sDisease Awareness Month.
So today we wanted to invite avery special guest who was a
caregiver to her grandmother andnow a caregiver for her mom who
lives with dementia, and howthat propelled her into her
(00:32):
starting her nonprofit geared tobringing assistance and
resources to family caregiverscaring for someone living with
Alzheimer's and relateddementias.
So let's hop right on in whatis home care.
How do I navigate health care?
Speaker 2 (00:44):
What do I do when I feel down and depressed?
Speaker 1 (00:47):
I'm stressed.
Am I enough?
What can I do?
What is this going to cost?
So we have Miss VeronicaShanklin.
I call her the family caregiverextraordinaire and founder of
Dementia Care Warriors.
So tell us a little bit aboutyourself and tell us about
family caregiverextraordinaire-ing, you know.
Speaker 3 (01:08):
So I am Veronica Shanklin and I am a full-time
caregiver for my mom.
I was a full-time caregiver formy grandmother and how that all
started was over 10 years ago.
I was living in Chicago, I wasa single bachelorette living my
best life.
I had a corporate job andeverything was great.
But back home my mom was takingcare of my grandmother and she
(01:31):
was kind of struggling to takecare of my grandmother who had
Alzheimer's disease.
Long story short, eventuallythere was an incident with my
grandmother and my grandmotherended up in the hospital.
She got kind of combative withmy mom and another family member
ended up in the hospital.
She got kind of combative withmy mom and another family member
ended up in the hospital and Iended up flying down to try to
help bring some stability to thesituation and that's pretty
(01:52):
much the beginning of mycaregiving journey.
Oh, wow.
And so that was again likearound 11 years ago.
Speaker 1 (01:59):
With that.
What is so cool with what youjust said?
You said your mom wascaregiving for, was that her mom
?
Wow, and so now she's in thestate where she needs you to
care for her, right, and that'sjust amazing in and of itself.
Like you know, if your mom wasin a space where she understood,
(02:20):
you know she knows what you'regoing through, even with her not
being in the state tounderstand that, and I think
that's that's totally cool.
So, with that, care for yourmom, your grandmother, what kind
of How's your caregivingjourney?
How has it been?
Kind of talk to me a little bitabout what a day in a life
looks like for a caregiver.
Speaker 3 (02:38):
OK.
So I do want to say I movedhome to help my mom with my
grandmother and then, a yearlater, my mom was diagnosed.
So then I cared for both ofthem.
Speaker 2 (02:47):
And I know you kind of went and asked a question.
But you was a bachelorette, youhad your own.
I guess life that you was on ajourney on right.
And this changed your lifeRight, so continue.
Speaker 3 (03:03):
So yeah.
so a year later my mom wasdiagnosed, so then I had both of
them at the same time and so usin charge of doctor's
appointments and when I movedhome, their diets were not very
good, very high blood pressureand swollen ankles and all that
(03:35):
kind of stuff.
So I came in and kind of fixedthe diet and just kind of
brought some stability to thesituation.
And so for the next four yearsI took care of my mom and my
grandmother at the same time mygrandmother passed in 2017.
Um and a day in the life of afamily caregiver.
I talked to a lot of caregivers, a lot of caregivers, and it's
all different.
You know, as we know, right Forme, for my mom just my mom
(03:58):
right now, it involves every day.
I'm helping her.
I get her up, I get her dressed, I comb her hair, brush her
teeth, get her breakfast, gether meals for the day, get her
meds Everything you know it'scalled the activities of daily
living Right Is what they callit in the industry and so I help
her with all those things.
Speaker 2 (04:15):
So tell me this With helping her with all those
things, I'm going to ask thequestion that probably a lot of
people won't understand but why,why did you continue to help
your mother and your grandmotherwhen, hey, you could have been
living your own life?
Speaker 3 (04:33):
It's a very good question.
You know, it was just for me itwas second nature.
It was if not me, then whoRight?
Speaker 1 (04:43):
You know and they took care of me.
Speaker 3 (04:43):
Right, you know, I mean took care of me.
Speaker 2 (04:45):
Right.
Speaker 3 (04:45):
You know, I mean, I had a great childhood, Right, I
wanted for very little, you know, and so they took care of me,
and so now is my time to takecare of them.
Speaker 1 (04:55):
I love that, and so that's not easy.
Again, like you said, you hadyour own life in Chicago.
You were doing your own thing.
Kind of what emotions as afamily caregiver do you deal
with on a day-to-day basis?
And then let's just be honest,we know it's hard, so don't hold
back, you can give it to us,even though you make it look
easy, listen we've knownVeronica for a long time.
(05:18):
She does, she makes it look soeasy.
Speaker 3 (05:21):
So emotions, I would say let's see exhaustion um,
frustration, um isolation, Umand you know, honestly, I don't
want to be honest some level ofresentment, yes, Because
(05:43):
resentment with other familymembers who don't step in, and
resentment also because, mother,why did you not set yourself up
to be taken care of?
You know, in this time of yourlife, financially Right, or
maybe there was insurance youcould have gotten, you know, or
all of those things to where itall falls on me, right.
Speaker 2 (06:05):
So I hear a lot of it's a lot of emotions in there
right.
A lot of different thoughts.
How do you deal with those intaking care of your loved one
and also maintaining youremotions in those situations?
Speaker 1 (06:19):
Right.
Speaker 2 (06:20):
Right, what is your go-to?
Speaker 3 (06:23):
I would say therapy, okay.
Okay.
That is sometimes frowned uponin our community.
I highly recommend getting agood therapist to talk through
these emotions.
Right, you know.
And also you know self-care,taking breaks and being
intentional.
It's something I preach all thetime to caregivers is being
intentional about taking breaks,taking care of yourself,
(06:44):
because it's not going to beeasy, you know, and even dealing
with this it's an ongoingjourney.
So even you know, today is agood day, tomorrow might be a
bad day, right, you know.
And understanding that that'sjust a part of the journey.
Speaker 1 (06:55):
Yeah, and then and then to, it's the, it's like the
little thing.
So you talked about likegetting her up, getting
addressed and things like that.
Most of the most of thoseemotions you're feeling in those
little acts of doing hey, mom,let's put this shirt on or let's
put these pants on, and we gotto go to the doctor, but there
is something on that table thatis getting her attention and she
(07:16):
has to touch it.
Right, it's those, it's thoselittle things, and so kind of
talk to us a little bit abouthow do you navigate through
those type of situations.
Speaker 3 (07:27):
For me, you have to understand, sometimes it's okay
to walk away Because one of ourbig things challenges right now
and it's interesting becausesometimes I'm so well-versed,
you know, as far as education,and so I know some things to
expect, right.
So I remember previously wedidn't have issues with shower
time, right, right, she was fine, she'd be getting a shower.
You know, I hear about otherpeople who have a loved one who
(07:49):
literally hasn't bathed in weeksbecause they can't get them to
bathe and we weren't havingthose issues.
But now it's harder to get herinto the shower because I don't
want to and I'm like, okay, well, you need to.
You know, kind of going backand forth and sometimes
understanding that if I'm not inthe mood and she's not in the
mood, nothing is working we'regoing to take a step back.
(08:11):
I'll be back and leave you here.
You know what I mean.
Try again later.
Try again the next day butbeing okay with knowing that
sometimes it's okay to step back.
And someone once told me youwill never win an argument with
a person with Alzheimer's.
Speaker 1 (08:25):
Right, and that's important to remember because
they're not Feelings getinvolved, right Feelings get
involved.
This is your mom, and hey look,there's a million things that
we have to do today, but also,at the same time, their world is
a lot different from ours,where it's black and white here,
it's pink and purple over there, and so we have to understand
that, and so I think that'ssuper important that you say
(08:46):
that.
Speaker 2 (08:46):
Go ahead, and so we done, went down into the journey
of a day in the life of acaregiver, right?
So when did you realize that,hey, I need to learn more about
this disease or I need resourcesto help me?
Speaker 3 (09:02):
Right, you know honestly from the beginning.
Okay, because I'm a resourceperson anyway.
So, like I said, I moved backto Dallas.
I'm at home with my mom and mygrandmother I'm not working, you
know, at this time and I'm justhome and I'm like I'm online
searching, trying to findresources.
Time and I'm just home and I'mlike I'm online searching,
trying to find resources.
I actually ended up going tothe Alzheimer's Association,
(09:23):
doing a care consultation withthem, with one of their
volunteers, and then gettingmore involved with the
Alzheimer's Association andfinding resources, you know,
here and there, but a lot of itwas searching online and not
finding much you know, and thena lot of the resources that I
did find came from being out inthe community and networking and
talking to other people.
Speaker 1 (09:44):
So like what you found, so like those little
roadblocks like that, whereyou're searching, you can't find
much.
Why do you think that is?
Why do you think, when we'relooking for these resources, we
can't find them or they're notas easily accessible for
families?
Speaker 3 (09:59):
I will say that was 10 years ago.
It has gotten better.
I will say that there are a lotmore blogs and organizations
like mine out here who aretrying to do the work to help
caregivers.
But I think it's just a process.
You know.
It grows over time.
As more people become aware ofthe disease, more people are
willing to offer resources.
(10:20):
As organizations with resourcesand money become aware of how
important this is, they start tooffer more resources, Right,
you know.
So I mean, I think over timeit's slowly getting better,
Right.
And then also there's a lot ofstigma, you know, around the
disease and a lot of denial, youknow from people who are
caregivers don't realize they'recaregivers.
(10:40):
You know, around the disease anda lot of denial you know from
people who are caregivers don'trealize they're caregivers.
You know, and don't just that Dword.
Speaker 1 (10:49):
No that's not that, In no way.
Yes, yeah, absolutely.
And so those resources howimportant do you think it is for
them to be able to access thoseresources but also have like a
village and a support systemlike around you as you kind of
navigate family caregiving as awhole?
Speaker 3 (11:08):
Very important.
I think those are the twothings that a caregiver really
needs is community and education, and even though I've been on
this journey for 10 years I'vetaken all kinds of classes, I
have certifications I still sitin on trainings or classes and
learn things.
Speaker 2 (11:24):
And.
Speaker 3 (11:24):
I'm like the world.
Speaker 2 (11:25):
The community dementia caregivers need to know
this information because itwill make your journey just a
little bit easier and I want toask about this, and I want to
ask about this the conversationwith the doctor when you learned
about that diagnosis.
What happened during that time?
How did you feel?
Speaker 3 (11:49):
Well, for my mom it was so cut and dry, it was so
not very helpful it was so Ipromise y'all.
I walked out of thatappointment when she got her
diagnosis and said I should havebeen a neurologist.
I was like because if that'sall we get, and that's all he's
(12:10):
going to, do.
Speaker 2 (12:11):
I was like I can do that, even though clearly I know
there's more to neurology thanthat.
Speaker 3 (12:15):
But just based on that experience, I was like he's
like all right, come back in.
Maybe I don't know if it wasthree months or six months.
Yeah, it was like you know,come back, and you know what.
It's interesting because I hada conversation.
We switched.
We switched doctors after thatbecause I just didn't feel you
know helpful.
Speaker 1 (12:39):
But, eventually.
Speaker 3 (12:40):
I had a conversation with a neurologist one time and
I said how does it feel to knowthat there's not really much you
can do?
You know, I mean with thisdisease like the comeback in six
months is pretty standard,right, but you can also say
there are resources to help.
Speaker 2 (12:49):
That's what I was going to ask, what you wanted to
hear.
Speaker 3 (12:51):
Yeah, I want you to give me some resources.
I want you to tell me this isnot.
You know the end.
Right, right, because even inthose early, days, my mom and I,
we still traveled, we stillwent to concerts, we still did
events.
People feel like you get thisdiagnosis and it's the end.
Go sit in a chair in the backroom somewhere.
Speaker 1 (13:07):
Right.
Speaker 3 (13:08):
Right, and that's definitely not the case.
Speaker 2 (13:10):
Right, wow, so tell me you was part of a film
Refresh my memory on that filmreal quick.
Speaker 3 (13:17):
I was a part of a film called Wine, Women and
Dementia.
Yes, it was nice and it's oneof those blogs that I found when
(13:46):
I was doing my research and herwriting was so amazing and it
was just so real and I ended upreaching out to her,
complimenting her, you know, onher writing, reposted one of her
posts and we kind of becamefriends and started
communicating.
Then, when her mom passed, shedecided she wanted to do a
documentary and go around thecountry and talk to caregivers
that she met on her journey andI was one of those caregivers.
So that is it was.
It was an amazing experience.
Speaker 1 (14:05):
I mean in that film, that film really it kind of
changed even my thought process.
I mean we go through this everyday.
We've been doing this eightyears.
You know we had the time withmy great grandmother that we had
and just seeing it fromdifferent perspectives from
everybody and kind of in thefilm, even with Kitty and kind
of what she went through.
It's just phenomenal whatfamily caregivers do as a whole
(14:26):
and I'm glad that she was ableto highlight and celebrate that
at the same time, and in that ithelped me learn that it's okay
to not feel okay.
Speaker 2 (14:34):
It's okay to be angry about the situation, it's okay
to feel how you feel, but in thesame time, hey, there's
resources out there and becauseof the person that you love,
you're taken care of.
Hey, you just get back up thenext day and put your pants on
one leg at a time and go.
Speaker 3 (14:50):
One way that Kitty and I connected was because we
were both like you got to findsome laughter some joy something
in this journey it cannot beall dark and terrible, and it's
interesting because when I firststarted this journey, all the
blogs that I saw were very sadand very dark.
Speaker 1 (15:08):
you know et cetera.
Speaker 3 (15:09):
And I'm just coming into it like, oh okay, you know
I'm not going to be like that,we're not going to find.
And I will say 10 years later,I get it.
I get why everything is so dark, but you have to be intentional
about finding moments of joy,exactly.
Speaker 1 (15:24):
Because it's tough and then if you just kind of
stay in the dark, you're nevergoing to get through it.
So with that, with theresources, you said, hey, I want
to bring extra resources andsupports to family caregivers,
just like ourselves, and youstarted Dementia Care Warriors,
which is a 501c3 nonprofitorganization.
Tell us more about that.
Speaker 2 (15:44):
Yes.
Speaker 3 (15:45):
So again I was volunteering with the
Alzheimer's Association andcoming across all of these
resources that I didn't see thecaregivers in my community
having access to or knowledge of.
So I kind of started just beingthis resource for my friends or
, you know, other people who Iknew who were on this journey,
and I started a support groupand so it started with support
(16:07):
group happy hour because, again,you know, we don't I've been to
enough support groups that werevery yeah.
So we started support grouphappy hour and we would meet at
a Mexican restaurant once amonth and over tacos and
margaritas, vent, lean on eachother, share resources and the
things that go on with supportgroups, but just in a more laid
(16:30):
back you know, environment.
So we started with the supportgroups, and that was in 2019.
And that was in 2019.
I also before I had DementiaCare Warriors or before I had
the 501c3, did an event with theAlzheimer's Association at my
church.
So we did like a conference forAfrican-American caregivers at
my church and eventually got the501c3.
(16:51):
And again, that was 2019, rightbefore the pandemic.
Speaker 2 (16:55):
Exactly, exactly.
Speaker 3 (16:59):
So one of the things that I wanted to do was a
caregiver conference, and so Icame up with Revive Refresh.
Yes, revive, refresh and thefirst Revive Refresh was going
to be in March 2020.
And, of course, march 2020 came, but Revive Refresh was going
to be a day to pour intodementia family, caregivers and
(17:19):
for caregivers, by caregivers,and all of the things that I
felt like caregivers would wantout of a conference and not your
typical caregiver conference.
So, live DJ, catered brunch,because no box lunches, a vendor
resource, fair, amazingspeakers and volunteers who love
on caregivers.
Speaker 2 (17:39):
Right.
Speaker 3 (17:39):
So that was the plan for Revive, refresh and Revive.
Speaker 1 (17:42):
Refresh is awesome yeah, I mean she, she, she have
massages going on and she man,you be having the whole nine.
So what with Revive?
Refresh, like you said, it'sthe poor.
On family caregivers, but whatdo you want them to take away
from when they leave that momentand they leave that meeting,
(18:02):
that gathering?
What do you want them to takeaway from that?
Speaker 3 (18:05):
I want them to take away knowing that they're not
alone, right.
I want them to take away theeducation that they receive from
the amazing speakers that wehad.
This year we had breakoutsessions and we had keynote
speakers, and so all the thingsthat you learn from them.
I want you to take with you andjust to know that somebody out
here cares, right, because thisis a very isolating role.
(18:26):
Yeah, you know that we're inand you also find that it's hard
.
It's hard sometimes to talk topeople who have not been here,
right?
You know like if I tell youthat my mom did something
strange.
For lack of a better word.
Right Another caregiver islikely to understand.
Speaker 1 (18:45):
Yeah, yeah.
Speaker 3 (18:47):
I had a caregiver tell me that she was telling a
friend that her husband wasdoing something and the friend
was like oh girl, I do that too.
You know, it's like it's notthe same.
Speaker 1 (18:56):
Right, right.
Yeah, I think also, too, thatcould be.
We deal with a lot of familiesand one of the big things that
they say a lot of times is he'sjust doing that because that's
how he was back in the day.
And that happens a lot, andthat's kind of where that
frustration or that isolationkind of comes from, because we
remember who they were prior tothat disease and then when they
(19:18):
start bringing in those olderparts of them, that kind of
seeps through.
You're like oh no, I know she'sjust playing or he's just
playing, and so kind of beingable to kind of understand that
and kind of combat that.
So that's great that you saidthat.
Speaker 2 (19:29):
So what I want you to do now is tell us what's next
with Dementia Care Warriors.
Speaker 3 (19:34):
What do?
Speaker 2 (19:34):
you have going on next.
Speaker 3 (19:36):
So what's next with Dementia Care Warriors?
So first, dementia CareWarriors.
Our mission is to provideresources and support to
dementia family caregivers.
And we do this through arespite scholarship program.
We do this community education,we do a monthly support group
meeting and we are forming awonderful community of dementia
family caregivers.
(19:57):
And so next month coming up isNational Family Caregiver Month,
and that's a huge month for usat Dementia Care Warriors.
It's also our birthday month,and so we do a lot for National
Family Caregiver Month, startingwith Faces of Care Warriors.
Speaker 2 (20:12):
Yes, Faces of Care Warriors.
Yes, give us the deets, hold on.
So, faces of Care Warriors iswhen.
Speaker 3 (20:18):
Nope, the first event is November 1st.
Speaker 2 (20:21):
Tell me about it, okay.
Speaker 3 (20:22):
So Faces of Care Warriors.
We do a professional photoshoot with caregivers and their
loved ones, and so this is oursecond year doing it and we
actually bring them out to aphoto studio with a photographer
.
They get dressed up, they comeand we treat them like stars,
and so then we have thesebeautiful photos and images that
are part of this photo exhibit.
(20:42):
So November 1st is the nightthat we unveil this second
installment of the Faces of CareWarriors photo exhibit.
So November 1st is the nightthat we unveil this second
installment of the Faces of CareWarriors photo exhibit.
It's also our annual fundraiserfor Dementia Care Warriors and
it's kind of a cocktail stylereception that we invite the
community out to help us honorand celebrate these caregivers,
to honor some community partnersand just have a good time and,
(21:05):
you know, come and celebrate,that's awesome.
Speaker 1 (21:08):
Now she's always just being so humble, but y'all had
to see what she did last year.
Yes, it was beautiful.
Speaker 3 (21:14):
It was amazing.
Speaker 2 (21:15):
The pictures, that was taken at the studio was
beautiful.
Everything that you put.
You go 100% all the time you do.
Speaker 1 (21:21):
She goes 100% every time, and so you really don't
want to miss that, because Ithink just the emotions that
those portraits evoked, when youwere able to see them they were
in black and white, you know soyou were actually just being
able to see them and their lovedone who was dealing with
dementia, and it's just itreally brought tears to our eyes
because we were like a lot ofthese families when was the last
(21:44):
time they were able to eventake a photo, or you know all
those different things?
So I thought it's just amazingand so y'all don't want to miss
that.
What time will it be?
On the 1st.
Speaker 3 (21:54):
So November 1st at 630 at Urban Arts Center.
And they can visit our websitefor more information.
Can I talk about the other part?
Speaker 2 (22:01):
Yeah, go ahead, Go ahead talk.
Speaker 3 (22:09):
So there's that November 1st kickoff, and then
it's a photo exhibit thattravels, and so it will also be
at Dallas Public Librariesduring the month of November at
the White Rock Branch and thePolk Wisdom Branch during the
month of November, and thenagain.
All of this ties together, sowe have an education event at
the library.
We're also doing a yoga resetevent for caregivers for
dementia family caregivers inNovember.
(22:31):
That'll be yoga and soundmeditation, DIY essential oils.
So it's just a huge month forus for dementia family
caregivers.
Speaker 1 (22:42):
So where can they find, like all the events that
you just talked about?
Where can they find all of thatand get all the resources that
they can so they can come tothose events?
Speaker 3 (22:51):
So you can find all this information on our website
at DementiaCareWarriorsorg.
Make sure you visit the websiteand you join our email list so
you can stay in the loop of allthe amazing things we have
coming up for November and justmoving forward in the future,
and also follow us on socialmedia, on Instagram and Facebook
at Care Warriors.
Speaker 1 (23:10):
Well, veronica, I thank you so much for being here
with us today and just givingus a little insight into family
caregiving.
Especially with this beingFamily Caregiving Month, we want
to make sure that they have allthe resources needed.
So, to gather all of what wetalked about today, please click
the link in our bio taking youover to our podcast website to
be able to download everythingwe discussed today transcribed
just for you, under thetranscript tab.
(23:31):
Also, please go toDementiaCareWarriorsorg so that
way you can get all theinformation that she was
discussing today, as well as getall the event information,
because that's super important.
You don't want to miss those.
If you enjoyed what you've heardtoday and would like to hear
more, please subscribe andfollow us on YouTube at the
Journey Out, and as well asfollow us on all podcast
platforms.
On our podcast website, you cansupport the Journey Out podcast
(23:53):
with a monthly donation of yourchoosing, helping us to
continue to provide theseepisodes every week.
Your contribution is more thanappreciated and we thank you.
And with that, that's a wrap ontoday's episode of the Journey
Out.
We pray that the thingsdiscussed today have been a
helping hand for you and theones you hold close, positively,
bringing you out of one seasonto the next, starting your
Exodus journey, and I thank you,ms Shanklin, for coming on.
Speaker 2 (24:17):
And I hope the knowledge that you guys got from
this podcast help you growSelf-improvement right and you
become a resource for yourfamily and also your community.
Speaker 1 (24:27):
All right, we're out, see you.
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