Nancy and Sue from The Caregiver's Journey join Shaman Isis to discuss their mission of supporting dementia family caregivers with practical resources and emotional guidance.
• Founded their podcast after experiencing the challenges of caring for spouses with dementia
• Created practical resources because caregivers receive little guidance after a dementia diagnosis
• Share that caregiving can be isolating due to stigma and lack of self-identification as caregivers
• Explain that caregivers often experience "drip grief" as they gradually lose the person they knew
• Discuss common challenging behaviors like sundowning, delusions, wandering, and incontinence
• Warn about the "caregiver cliff" with dementia cases projected to double by 2060 while caregiver numbers decline
• Emphasize the importance of finding support through community groups and online resources
• Advocate for self-care as essential rather than optional for effective caregiving
• Encourage caregivers to "give yourself grace" and recognize perfection isn't possible
• Highlight a promising Medicare pilot program that may improve support for dementia caregivers
Connect with Nancy and Sue at thecaregiversjourney.com or find their podcast on any major platform.
Spiritual guru, two-time #1 best-selling author, and higher consciousness advocate Shaman Isis (aka Cynthia L. Elliott) is on a mission to turn the tide of the mental and spiritual health crisis with mindfulness practices, incredible events, powerful content, and motivational storytelling that inspire your heroes journey! Learn more about her books, courses, speaking engagements, book signings, and appearances at ShamanIsis.com.
Ready for a life transformation? Ready to bring your dreams to life? Then you will want Glowup With Shaman Isis: The Collection of inspiring books and courses filled with life lessons and practices that raise your vibration and consciousness.
Ready for a life transformation? Ready to bring your dreams to life? Then you will want Glowup With Shaman Isis: The Collection of inspiring books and courses filled with life lessons and practices that raise your vibration and consciousness.
GlowUp with Shaman Isis: An Edgy Podcast for Transformation and Higher Consciousness
Are you captivated by inspiring personal stories, hero’s journeys, and reflections on spirituality's place in modern life? Tune in to GlowUp with Shaman Isis, the bold and uplifting podcast by spiritual rockstar, 2x #1 best-selling author, and veteran podcaster Cynthia L. Elliott—aka Shaman Isis.
Discover more at ShamanIsis.com or SoulTechFoundation.org.
Follow her on social media at:
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
Well, hello, hello, hello.
It is Shaman Isis.
Welcome to Glow Up with ShamanIsis.
I'm also known as CynthiaElliott if this is your first
time here, and I'm psyched Ihave not had two people on the
podcast.
I don't think I've ever had twopeople on the podcast at one
time.
I'm so delighted to have theladies from the Caregiver's
Journey, Nancy and Sue, heretoday.
Please say hello to ouraudience and then tell them what
(00:26):
you do.
Speaker 3 (00:27):
Hi, it's very nice to meet everybody.
Speaker 2 (00:30):
Yes, wonderful Thanks for having us.
We really appreciate it.
Speaker 3 (00:33):
Yes, we do.
Speaker 1 (00:34):
Yeah, yeah, so I we, before we started recording, we
were talking about the work thatyou guys do for your nonprofit.
Uh, can you guys share for justa minute?
Give them the them the couplesentences on really what you do.
Speaker 2 (00:47):
Sure, we're focused on delivering resources that
help dementia family caregiversmanage day-to-day dementia
caregiving challenges, becausewe went through that and we both
cared for multiple people withdementia over the course of our
lives and most recently ourhusbands and found a lack of
(01:08):
really practical tips on how tohandle common things that were
happening.
And Sue went through it firstand so thank goodness I have a
friend who had been through this.
So I called Sue many times inmy husband's dementia journey
and asked for help and advice.
But not everybody's got a Sue.
So we set out to create a wayfor dementia family caregivers
(01:34):
to get the practical advice theyneed to handle what they're
committed to at home or in acommunity, actually, either one.
Speaker 1 (01:42):
I love that you're doing this.
I think this is a conversationthat really has to take place on
a higher level in this countryand that not only are we not
talking about how we're caringfor our elderly or people who
are sick, it's sort of like it'salmost like a dirty little
secret in this country.
And then when you get and thisis my opinion, obviously I'd
love to hear you guys point ofview I don't.
(02:03):
I really don't feel like we'rehaving that conversation about
the fact that the system inAmerica is not really structured
.
Well, we could have a wholeconversation about the
healthcare system.
What a hot mess it is, but it'snot really set up to support
people in America who are goingthrough something like the
caregiver's journey, taking careof people who have dementia.
Do you guys agree with that?
Speaker 3 (02:22):
I'd say yes, and in many ways, one of the things
that we're learning about isthat more and more the voices
are raising about it, so thatthere's more of a groundswell
right now, and there hastraditionally not been much of a
groundswell, because so manypeople who are caregivers are
also working in businesses andmany businesses don't identify
(02:43):
and recognize family caregivers,and because of that, the
employees don't self-identifyand so they don't share with
other people that they arecaregivers.
And then another part of it hadhistorically been the stigma of
it that there's the familymember and we didn't want to
share what's going on with thefamily member, and then, kind of
, the third leg of the stool iswe live in a country that has
(03:08):
diverse cultural communities andfor some of them they aren't
caregivers.
This is just what you do.
This is family, and so it's ablend of a variety of different
things.
As the baby boomers are agingout of being able to be
caregivers and they're nowbecoming the care receivers, the
(03:29):
impact and the stress israising the need for us to
communicate openly about thefact that people are caregivers
and find better wayssystematically throughout the
country and in businesses and inhomes, to support family
caregivers, and that's part ofthe reason that we're so vocal
with providing the support weare is to help be one of those
(03:52):
really responsible voices forcaregivers Once they're seeking
support.
We want them to know that we'rea trusted resource they can
come to to get answers toquestions they may not even know
to ask.
I definitely don't know to ask,yeah.
Speaker 1 (04:08):
Yeah, you bring up a lot of really good points there.
One of my biggestdisappointments in the way that
America has kind of unfolded isthat our healthcare and
insurance systems are socorrupted and the price of care
of any kind has become so absurdand outlandish for the vast
majority of Americans,especially given the economy and
(04:28):
what's going on with employmentnow.
Combining that with the shameof having to actually personally
take care of somebody becauseyour system or your structure
within your family doesn't allowfor there to be support.
And then most businesses treatthat in a very sort of
subconscious way, the same waythat they do women needing to
(04:50):
take care of their children,like keep that at home, don't
bring that to the office, that'syour private information.
Or if you do bring it up, thenyou can't possibly be doing a
really good job at your jobbecause you have this other job
at home.
I mean I think it's a reallyinteresting dynamic that speaks
to a lot of the systematicissues that we have here, but
(05:10):
also just the cultural issues.
I mean we have some cultures,like you mentioned, talk about
multicultural America becomingmulticultural and there being
multi-families in one householdbeing parts of cultures that
have become more dominant herein the States, but still the
vast majority of people in thiscountry don't actually live in
the same household with theirparents, their grandparents, and
so there's a there's a lotthere to unpack.
(05:32):
So when you to backtrack forjust a second, when you two,
firstly, this was inspired.
The caregiver's journey, thepodcast and the work that you're
doing was inspired because, sue, you went through it first and
then Nancy was going through itand contacted you for help.
Do I have?
a spam and it just sort ofunfolded from there.
Speaker 3 (05:51):
It did.
Yeah, my first caregivingjourney began when I was in my
mid twenties and I've had anumber of them over the last 40
years.
And you, you know, I didn'tself-identify, never
self-identified in in work.
It wasn't appropriate at thetime, it would have altered the
trajectory of my career and then, as Nancy was going through
(06:11):
hers, it was really so fortunate.
It's interesting you wouldn'thave planned that this brought
us together.
You know, they say in themoment of an experience you
can't possibly know if it'sultimately good or ultimately
bad.
Speaker 2 (06:37):
And something that was challenging for both of us
has led us to create somethingthat we hope is creating
something, having been friendsand neighbors, but to reconnect
and be able to just be on thesame wavelength.
So much of what we do all day,every day, we're on the same
wavelength.
We have a conversation, we knowhow to challenge each other
respectfully, but I think thatcreates a really great end
(07:03):
product and that's the responsewe've been getting from the
market at large and from ourlisteners is that we hit the
nail on the head and they'regetting the kind of information
that they need and, in the end,our only objective is to help
support dementia familycaregivers A simple objective.
Speaker 1 (07:19):
What are some of the main issues that you
consistently see that peoplestruggle with when they're on
that journey?
Speaker 2 (07:26):
So let me start with something.
Sue and I often say that whathappens when a loved one gets a
diagnosis is you go to theneurologist, you know something
might be wrong, you'resuspicious, they meet with the
neurologist and what happenswhen they get?
You come out of theneurologist's office, the
neurologist says they've gotdementia and you go home with a
(07:47):
bunch of medication orconversation around the person
living with dementia and howwe're going to progress through
their journey with the doctor,but there's nothing that the
family caregiver goes home withon how to be a caregiver.
Not only that, a lot of peopledon't even identify as a
caregiver.
They don't think about that astheir role.
(08:09):
So there's just the beginningof the process, which is how do
we help people know they're acaregiver?
And then, once they do, how dowe help them get started
understanding what's coming andhow do they put, how do they
leverage what's coming to figureout how to manage things at
home with more confidence, morepatience and more peace of mind,
(08:32):
and that will help them createa better experience for the
person living with dementia aswell.
You'll be a better caregiver,and if you're a better caregiver
, the person living withdementia is going to get better
care, mm-hmm, and that's kind ofhow it all ties together.
Speaker 1 (08:48):
Yeah, from my own experience, you know I've I've
cared for several people over mylifetime as well, and when my
sister was dying of um uh,cancer, she got from being a
prostitute, uh, we grew up incare in an orphanage and when
she got sick, it was, it was, itwas.
There was a lot going on.
You know, I had to go get herfrom the crack house and then
(09:10):
get her off the drugs and gether into care and and the
emotional and mental trauma thatI was going through as an
individual was something I couldnot get any help for from my.
I couldn't even talk to her.
They didn't even.
They weren't there.
I mean, and that was obvious,they were there to take care of
my sister, but I it was likethere were no resources, there
was no conversation, stress theguilt that I felt about being
like, oh my God, would you stopscreaming.
(09:31):
You know, like you know, whenshe was in pain and and I so, I
know that experience that wedon't talk about, which is the,
the, the emotional experiencesthat you have when you're
caregiving, that nobody wants tomention because of the shame
attached to not always beingable to handle it perfectly.
So true.
Speaker 3 (09:49):
And part of it is the shame and which is unfortunate
because that's really not thecorrect motion.
But they don't know what emotionto have, and one of the things
that we try to raise the levelof awareness of is it's
reasonable you wouldn't know howto feel, and it's reasonable
you wouldn't know what to do.
And it's reasonable youwouldn't know what to do because
you didn't go to school forthis and you didn't come out of
the meeting with the doctor witha guidebook of things to do.
(10:11):
And so we associate emotionsbased on things that we have
what I call a referencereservoir what we've observed,
other people have done, and soyou say, well, this is what they
did, so this is what I shoulddo.
They don't know how to feel forthemselves, and often they
attach an incorrect emotion forwhat they're feeling.
So where they say that theyfeel guilty, well, I don't know
(10:33):
who's looked up guilt.
They're angry, but they don'tknow how to process it.
So part of what we're doing ishelping people understand.
It's okay not to know, andwe're going to help you figure
these pieces out.
(10:53):
And then another huge part ofit is part of the reason they
don't know is well, they'venever done it and they don't
even know who to ask.
And what we do is we connectpeople with resources that will
help them get answers toquestions they don't even know
who to ask.
And what we do is we connectpeople with resources that will
help them get answers toquestions they don't know to ask
.
We recently had an episode withtwo very experienced elder law
(11:16):
attorneys and the things thatthey were introducing people to
that you wouldn't know if thishadn't been a part of it and the
things, for example, there are.
The elder law attorneys that myhusband and I worked with
changed the trajectory of ourability to provide care and to
understand the process and tomake the wisest choices while we
(11:38):
still could, to be able to putus in a position to provide care
, and so a lot of it is justpeople don't know, and that's
really sad, but that's thereality of it.
It's easier to find informationnow online, but you're like,
well, what do I search forExactly?
Speaker 2 (11:58):
And the other thing is, if we find at least the
response we get back fromlisteners.
Listeners is, if we give peoplethe essential knowledge that
they need, they're moreconfident.
And if they're more confident,then they just they get a piece
about them which keeps thisguilt and and you know
continuous beating yourself up,which is what happens when
(12:20):
you're trying to, you'restruggling with I don't even
know what to do, cause if you'dknow what to do to help your
sister, you would have done it,but instead you don't know what
to do, so you beat yourself upand you're frustrated and upset
and angry.
And that's very similar to whathappens with dementia family
caregivers.
They don't know what to do,they get frustrated.
Very, think of the same person.
If that person asks you thesame question over and over and
(12:40):
over again, it'd be pretty easyto get frustrated.
But you know they, you don'tunderstand why they're doing it
and you don't understand whatyou're supposed to do to help.
And so the more information wecan give people, the easier it
is for people to to live in thatuncomfortable, difficult
situation.
Speaker 1 (12:58):
You know your shares on both of your shares on that
actually bring to mind somethingthat I think is kind of an
interesting angle, and that iswe're not taught emotional
mastery and we're not taughtmental fitness.
In our world we are taught tobe victims, we're taught to try
to align with perfectionismbecause we live in a world that
(13:21):
sort of is laid out in a waythat you're sort of expected to,
to know or understand thingsand without teaching people
emotional mastery.
There there is the guilt andthe shame because you don't
understand.
You don't understand, you feelguilt and shame about not
knowing what to do or not doingit perfectly, and it's a very
subtle thing.
So I teach people how to raisetheir human consciousness and at
the bottom of humanconsciousness the lowest
vibration is guilt and shame.
(13:43):
And then it gets to.
You know things like, you knowanger and you know it's all fear
based and it is and andteaching that would be such an
interesting thing is like sayingyou know, here's some emotional
mastery, because beginning tounderstand why you feel that way
, like at times when I would getangry- and my sister she's
dying and I know she's dying.
Speaker 3 (14:03):
And you're angry.
Speaker 1 (14:03):
And I'm getting angry , and I'm getting angry at
myself for getting angry.
Speaker 3 (14:07):
Yes, yeah, because you don't know and you don't
know what to do.
So it's easy to put the labelof what an emotion is on it,
when really, if you were able tobreak it down or have a
conversation with someone, youwere fearful for your sister,
you were frustrated because youdidn't have answers, you didn't
have a clear path, so it gets tobe overwhelming and it just
(14:30):
keeps snowballing, and so,actually, you're not angry at
your sister, you just don't knowwhat to do.
And we're providing the answersto questions people don't know
to ask or where we're talkingabout topics, we talk very, very
(14:51):
specifically and give theseanswers.
And this is the reason why whatyou're bringing up is exactly
why we have the format that wehave and we call it these
practical tips and candidconversations, because we want
people to be able to beempowered with answers to things
so that they can take action.
And then the other part of itis that when you're in that
(15:14):
journey and you've never done itbefore if, if you hear
something, if you listen to thepodcast episode and you go, aha,
I know someone.
We have had people who have sentus messages in response to one
of our podcast episodes that arelike I shared this because they
were going through it, and soit's raising the level of the
(15:34):
consciousness of the planet, andthat's something that you do.
There are a variety ofdifferent ways we can do that,
and in our own little corner ofthe world, this is what we're
doing, because so many peopleare impacted by it, and both of
us, when you take our collectiveyears of experience and variety
of kinds of experience we'vegathered, it's not wisdom until
(15:55):
we share it.
So we've got all of this andwe're sharing it to be able to
touch other people's lives.
Because, you know, nancy and Iboth talked about this, noah, so
I'm not speaking for her.
For her, we didn't know what itwas.
You know we were strugglingwith it too.
Speaker 1 (16:14):
Wow, I love the way you just said that.
That was really beautifullysaid, Thank you.
So dementia is, I find itreally interesting In Europe.
It's my understanding that theyare.
They believe that it is thethird level of diabetes or that
it's related to diabetes, whichI find it very interesting.
Speaker 2 (16:36):
I think they're over that.
I think I read something aboutthat that just recently, but I
think they're getting over that,so yeah, I'd be interested to
see what's going on with that.
Speaker 1 (16:43):
But dementia has its own kind of really interesting.
So my ex-husband, hisgrandmother I remember her going
through that and it leading toher eventual end and and
watching like getting calls inthe middle of the night and
having to go find her in thestreet because she was running
exactly in her nightgown.
So what are some of thoseissues that you deal with,
specific to dementia, that arechallenging in the caregiver
(17:03):
journey, that you wouldn'tnecessarily see?
Speaker 2 (17:07):
So behaviors is a perfectly good example.
I want to go home is such atypical one that people try to
deal with, which is, you know,all of a sudden it's late in the
afternoon.
That's when people withdementia typically.
Sundown is a common term.
Tired brain syndrome is whatSue calls it.
But they're tired and sothey're struggling so much to
(17:28):
figure out how to live allthroughout the day and just keep
up with.
They're confused, it's cloudyin there and they're just doing
the best they can, and they'reexhausted and so they lose their
ability to be in touch withreality, and so it's not
uncommon for them to havedelusions in the afternoon
particularly.
I want to go home's a good one.
Someone stole my wallet.
There's so many that are sotypical.
(17:49):
It's unfortunate.
But when you understand thatthat's how that's happening, why
that's happening and then howto actually get through it.
So we have a podcast on how tohandle delusions, so that you
understand how to get through it.
We did five podcasts onincontinence, from how to know
it's starting and how to getprepared for it to how to change
(18:12):
someone who's bed bound,because most people have no
earthly idea how to handlesomeone who's an adult who's got
incontinence, and so there's alot of information they needed
to know.
Wandering, as you described,with your grandmother another
common behavior that needs to bemanaged, and here's things you
can do to prevent it.
And here's how you search forsomeone.
(18:34):
If someone with dementiawanders out of your house,
here's the process you should gothrough to start the search.
So just so many examples.
I can't even start with bathingand dressing and brushing teeth
, because people with dementialose their ability to do all of
that, and so, as a familycaregiver, you have to step in
(18:54):
and help.
Speaker 3 (18:55):
And one of the things that can be so hard on that is,
for example, with my dad, myhero.
My whole life, my dad had thesetwo lessons I'm going to teach
you how to be safe, so you'llknow what to do when I'm not
here, and I want to teach youhow to think so you'll know what
to do.
And my whole lens of my life isthrough my dad being my teacher
, being my guide, and I had awonderful mother.
(19:26):
It's not the absence of themother, but but those were the
things.
It's so hard when they don'thave access to that anymore.
It's hard for you not to thinkof them through that lens and
want that to be for them.
So you want to start there andthey don't have it.
They're frustrated and you'refrustrated, and it's it's
learning how to let go of theexpectation that they have
access to things that for theirwhole entire lives they had
access to.
So you're also it's what I calldrip grief.
(19:47):
You're also grieving a littlebit every single day when one of
those goes away or whensomething else comes.
So you have more than just theemotion of exactly what's going
on.
You've got all of thesurrounding emotions, and so
it's a complex experience forboth the caregiver and the care
receiver.
Speaker 1 (20:06):
You bring up an interesting point.
I remember being in my formergrandmother-in-law is that even
a thing?
I don't know, I'm not even surewhat to call that and she had
dementia and, as I mentionedearlier, and I was standing by
the china cabinet I happened tocollect teacups, antique teacups
, and I was looking in it andshe's like get away from that
(20:27):
cabinet.
Southerners are all thieves andit was like, and I was like who
is?
Speaker 2 (20:32):
this person I was like oh, my god and my my ex was
.
Speaker 1 (20:36):
I mean, he thought it was hilarious and I was like no
, she's demonic.
They can change personalities.
Yes, yeah, and that must bevery difficult to deal with.
Speaker 2 (20:50):
And you know what else.
I think we were talking aboutour own emotions and how they
affect our behavior ascaregivers.
But if you reverse that andthink about the person with
dementia's emotions, and whenthey act out in different ways,
they're having the same fear.
They can no longer do what theywanted to do.
They don't understand what'sgoing on.
They're confused.
That creates fear in them, andI think you even said it.
(21:12):
I'm a true believer that at thecore of all bad behavior there's
so much of it's just fear.
So they have major fear.
They don't know where they are,they don't know who's there,
they don't know what to do, theydon't know how to get home.
They have so much fear.
Then they begin acting out.
And then they're acting out ina way that no one can explain or
(21:32):
don't know how to deal with,and that's not typical of their
personality.
People are lost with how tohandle those situations because
they're not used to that comingout of that person.
So there is so much behavioronce you understand what they're
going through that you canhandle so much better because
you've put yourself in theirshoes.
You have to understand whattheir shoes look like, but once
(21:54):
you put yourself in them.
Then you can manage thosebehaviors a lot better.
And I'm not saying it's easy,that that would be the wrong
thing to imply, but you can getthrough it.
It's probably the right thingto say.
Speaker 1 (22:05):
Yeah, yeah, I'm laughing because I can see my
dog in the back.
Speaker 2 (22:09):
I can too, and I'm really laughing because that
looks exactly like the dogthat's at my house right now.
Speaker 1 (22:14):
Pickles, it's pickles .
It's actually not even mine,it's my, it's my business
partner's dog, but I've knownher all life so I consider her
kind of a kind of mine.
But uh, sit down, sorry I'llclip that out of the podcast.
Uh, so the?
Um, I was curious about the.
So, given that the average sothe average person with dementia
, is it dementia that eventuallykills them, like that's the
(22:37):
part I'm a little confused about.
Speaker 3 (22:40):
Theoretically no.
Dementia.
The diagnoses and there are avariety, dementia is an umbrella
of many different types ofdiagnoses that are
neurocognitive disorders.
So we've talked aboutAlzheimer's disease, frontal
temporal Alzheimer's, dementiawith Lewy-Boddard's, so there
(23:07):
are a variety of differentdiagnoses.
They all impact the brain'sability to do its functions
correctly.
So what typically happens issome other function in the body
can no longer function correctly.
So does it contribute to it?
Yes, is it the direct cause?
For example, heart disease is adirect cause of someone dying
of heart disease.
They they're just.
There's a direct correlation inthere and most dementias are a
(23:32):
side kind of a, if you want tocall it that.
They contribute to it, butthey're not the direct cause.
Speaker 1 (23:38):
if you want to call it that.
They contribute to it, butthey're not the direct cause.
Okay, yeah, I was.
I was curious about that Cause.
I I haven't been around itenough to actually understand
you forget how to swallow, soyou get pneumonia.
Speaker 2 (23:48):
You know those typical things that that you'd
see in other neurocognitivedisorders, where someone forgets
how to forgets how to chew andswallow, and so things go down
the wrong pipe and they getwhat's it called Aspirating.
Yeah, they aspirate and thenthey get pneumonia and then they
die of pneumonia.
So it's the most contributingfactor, but it's definitely
(24:09):
causes them to die of something.
Speaker 1 (24:12):
Is it my imagination that I don't recall a lot of
people having dementia when Iwas young and I was very aware?
I mean, you grew up in the, inthe system, you trauma aware,
like you're always studyingeverybody's behaviors, engaging,
so I was very aware of people,especially older people.
I don't remember being around alot of people with dementia.
Is it my imagination that itseems to have increased?
Speaker 3 (24:32):
there are.
There are several things.
One, yes, it has increasedexponentially.
The second thing isgenerationally, it was not
discussed, there was not a lotof information about it, there
was not a lot of awareness of it, there was not a lot of
understanding about it, therewasn't a lot done about it.
People would say, oh, he'ssenile?
Speaker 2 (24:50):
Yeah, well, that means he had dementia, right?
But remember hearing somebodysenile.
Speaker 3 (24:56):
Oh, they're a little off, and people did not talk
about their loved ones.
You didn't see them anymore.
They didn't talk about theirloved ones.
They didn't.
You know, it wasn't somethinglike now when people have a
diagnosis dementia they're goingto the grocery store with you
and you're talking about andthere's much more of an
awareness of it.
So the prevalence of it hasincreased and the awareness of
(25:17):
it has increased, and yet yet itwas.
It was around.
It also was not very wellunderstood.
Speaker 2 (25:23):
Yeah, but it is increasing.
Just so you know the stats inthe U S there's about 7.4
million people living with sometype of dementia in the Americas
or in the U?
S and that's and it's 2025.
That's expected by 2060 to be14 million people, unless we can
fix this disease.
Speaker 1 (25:42):
Yeah, yeah, I know, you just gave me chill bumps, I
know Not pretty.
Speaker 3 (25:46):
It gives everybody chill bumps because, on the
other side of it, the pool ofavailable family caregivers has
gone, not too many years ago,from seven to one, down to a
little less than four to one now, and it's by 2050, I think it
is it's going to be down toabout 3 to 1.
And many of those are becausethe baby boomers are now
becoming the care receivers, andone of the other challenges is
(26:08):
because many people have stoppedcoming into the United States
to provide the kinds of jobsthat included being family
caregivers.
We're having an increasingcrisis in finding family
caregivers, so at the same timethat we are, we have more people
aging to become the pool ofpeople diagnosed with yeah I'm
(26:34):
sorry, thank you for correctingit Paid caregivers, yes, so at
the same time that we'resignificantly diminishing the
number of available familycaregivers, we are exponentially
increasing the need for paidcaregivers, at the same time,
where some who live heredomestically are like I'm done,
this is hard work and I'mfinding something else because
(26:56):
it doesn't pay well or I am notcoming into the United States to
have that job, and so we have acountry where we have not
figured out that solution yetand over the course of the next
20 years.
It's going to be somethingthat's way, way, way in the
forefront of issues beingaddressed.
Speaker 1 (27:14):
Yeah, absolutely.
You know the way that Americanand I understand just from
having written A New Americandream, which is the book I wrote
about studying the Americandream, its origins in the
post-World War II and they wouldtake care of each other.
It was this idea that living onyour own was really so
(27:42):
important, but it actuallydisenfranchised us from family
and from care.
And then we built this healthcare system that designed these
awful homes.
I mean, I I volunteered in alot of them growing up and it
was I was appalled 20, 30 yearsago, and they seem to have just
gotten worse.
We do not handle aging in thiscountry.
We do not take care of ourelderly in the way that you see
(28:04):
in other countries.
Just the honor in which it'streated to age is an honor, and
to take care of somebody who'saging is an honor in some other
country Not every country, butin other countries.
And here we're just a hot messand we've got this massive
number of people who are, whoare going to need care and we
don't have, as you so wellmentioned, we don't have the
caregivers, we don't have thesystem, and what systems we do
(28:27):
have are really built to to rapewhat wealth anybody does have
from them, like the pricing andthe cost of just getting an
aspirin when you're in.
I'm losing my adult care.
I forget what what the centersare called when it's elderly
care and they spend like-.
Speaker 2 (28:41):
Senior centers.
Speaker 1 (28:42):
Yeah, the senior centers are a horror show.
I mean, they're not much betterthan prisons.
Speaker 2 (28:47):
We are getting there is hope on the horizon just from
a Medicare perspective, becausetraditionally in order to have
any support from the USgovernment you had to be on
Medicaid and that was you couldget some support.
Every state's different how muchsupport you can get, because
Medicaid is different everystate.
(29:07):
But there is right now a pilotprogram with Medicare that is
focused, at least in our world,on dementia world, on dementia
family, on people living withdementia, on providing some
level of education and supportfor the family caregiver of the
person living with dementia, inaddition to providing medical
(29:27):
support for the person livingwith dementia.
So it's being piloted right now.
It's a six-year pilot where asmall number of organizations
are involved in it.
Now In July another 300organizations come on board to
continue the pilot and grow it.
And fingers crossed that weprove that it's worth our while
(29:49):
to support not just the personliving with dementia, but that
Medicare insurance is worth themspending time and money on
educating the family caregiverson how to support the person
living with dementia.
So that is a bit of a brightspot.
It's it's a pilot and it'sobviously has a lot of work to
do, but there's hope, at leastwe're trying.
Speaker 1 (30:12):
Yeah, I, I try to, I try to be hopeful, the we.
We really need a massiveoverhaul of of just the way we
go about a lot of things in thiscountry, and I love I mean I
love america, I'm very patrioticbut we have some serious
systematic issues that needaddressing.
The way a country treats itshomeless, it's sick, its
children, um, and its elderly isvery telling, and in america we
(30:35):
don't actually take care of ourpeople.
The greatest country in theworld does not take care of its
people, and I can't help butwonder if that's not about
hierarchy and reinforcing asystem that if you just keep
working harder, you'll be okay.
I love the work you guys aredoing.
It's incredible.
Not everybody has someone thatcan actually help them, and I
(30:57):
say this as somebody who grew upin the system, so obviously my
perception of it is going to bea little bit skewed, but it's
like you know who's going totake care of me and in the
system that we have right now,and I don't see how that's even
possible without being in anawful situation or less ideal
than it should be.
What would your advice be tolike?
(31:17):
Just what are some of yourfavorite bits of advice for
people who suddenly findthemselves on the caregiver's
journey.
Speaker 2 (31:23):
First, understand that when you get, when your
loved one gets, a diagnosis ofdementia, you just got a
diagnosis of caregiver andyou're not just a caregiver for
that person, you are a caregiver.
If you're the primary caregiver, you're a caregiver for you as
well no-transcript.
(31:59):
What would you say?
Speaker 3 (32:02):
I completely agree is that on the journey it's
important for us to prioritizethe fact that we never have to
be alone.
There's help all around us.
It's reasonable we wouldn'tknow the answers to questions.
Diagnosis one of the greatplaces to start is looking for
(32:25):
support groups in your communitythat support the diagnosis and
start asking questions, becauseone of the things I mean, nancy
and I, are passionate aboutsharing the messages.
There are people in communitiesthat may not choose to do that
through the medium that we'redoing it, and yet they will go
to support meetings all weeklong and share their lessons.
And so, whatever the diagnosisis, help is all around, and so
(32:48):
often we hear from people thatthey just feel so alone and so
isolated.
You don't have to reach out.
And if you can't find anybody,reach out to us and we'll help
you find somebody.
Speaker 2 (32:57):
And you know what.
We're circling back around towhere we started, cynthia, and
that is don't feel shame andguilt when you don't know what
to do.
Right, that's where we startedand it is so reasonable.
You don't know what to do anddon't shy away from asking for
support and asking for help andfinding support and finding help
(33:20):
.
You don't just have to ask.
Go find it, you know.
Go find a support group.
There's good online supportgroups as well.
Obviously, we encourage you tocome out and look at the
caregiver's journey website.
You can go see a blog or apodcast about almost any topic
you can come up with.
There's this little search barin there.
You can search based on your,your question, and you can
(33:40):
probably find a podcast or ablog on the topic to help you
question, and you can probablyfind a podcast or a blog on the
topic to help you.
But, but whatever it is, lookfor support and reach out and
don't feel guilty because youdon't know.
Speaker 1 (33:50):
Right, yeah, that's wonderful advice.
I would add to that too, assomebody went through it.
It is okay.
All of your emotions are okaywhen you're going through a
situation like that.
You will have times when, whenemotions will surface that the
you know the perfect, theperfect version of you wants to
give you crap for, and you knowwhat it's a it's a unique
(34:12):
situation with somebody who'snot behaving like their normal
selves.
Speaker 3 (34:16):
Right.
Speaker 1 (34:16):
And it creates some strange dynamics where you're
going to have moments whereyou're like, oh, I can't believe
.
I just thought that it's okay,you know.
Speaker 3 (34:23):
Yeah, you're like, oh , I can't believe.
I just thought that it's okay.
Yeah, and I think one otherthing that I would prioritize is
that it is so easy for us toflip the script incorrectly,
which is one of the mostimportant things we can do to
care for our loved one is tocare for ourselves.
That prioritizing our ownself-care and both Nancy and I
have done this, where we'vechecked that off of our list in
(34:44):
order to provide more care forour loved one, and both Nancy
and I have done this, wherewe've checked that off of our
list in order to provide morecare for our loved one, and then
we're not.
We don't have the capacity toprovide that level of care.
So self-care looks different foreveryone.
If you struggle with withcaring for yourself, if you feel
like, like I used to shave up,well, I don't need to, I can get
an hour less sleep, I can dothis, this, this.
So when you keep shaving thatoff can get an hour less sleep,
(35:04):
I can do this.
This is when you keep shavingthat off.
There will come a time when youhave shaved off more than you
can and if you feel like you,you have.
Or if you don't feel like youcan practice self-care if you
don't have a connected emotionto give yourself permission to
practice self-care.
Get an accountability partner.
Get someone else who can helphold you accountable for
practicing self-care, becauseself-care is you doing it and
(35:27):
nobody else can do it for you.
They can help make sure you doit.
But if you, the consequences ofyou not practicing self-care
are bad for you and your carereceiver.
Speaker 2 (35:36):
Right, and Sue always says give yourself grace.
Give yourself grace, and everytime when we're talking about a
topic in our podcast we'll getto the end of the topic and my
goodness, I can't believe.
I just thought that.
But give yourself grace,because this is a long, hard
(36:09):
road and, honestly, you're notexpected to know how to do it
perfectly.
No, one expects you to do itperfectly.
Give yourself grace.
Speaker 3 (36:16):
Is there anything perfect about it?
Speaker 2 (36:18):
No, it's what you'd call a perfectly imperfect
journey.
It is the most.
It will be imperfect, no matterwhat Right.
Speaker 1 (36:29):
Ladies and gentlemen, make sure that your cup is
overflowing.
You know you can't keep pouringinto other people when you're
taking care of them If yourcup's not overflowing, and give
yourself grace is such animportant one.
That's one I really I've reallystruggled with.
I had a terrible self-loveprogram for a long time, uh and
uh.
I think it's the most powerfulthing that any human being can
do to show up the mostbeautifully that they can and
build the most wonderful lifeexperience for themselves,
regardless of your circumstancesand repeat that last part
(36:54):
regardless of your circumstance.
Learning learning how to behappy is not about having a
perfect life.
It's learning how to deal withall the crap that's actually
going on in your life with thebest attitude possible.
Speaker 2 (37:05):
That's a great message to dementia family
caregivers too, because it youknow, it is a difficult journey
and and you've got to find a wayto find joy in life, because
you can't just say, oh, I'mgoing to put these 10 years
aside and be miserable.
That's not the not the way tolive.
Speaker 1 (37:20):
I love that.
Oh, thank you so much If ourlisteners excuse me, if our
listeners wanted to learn moreabout you guys and the work that
you do and find your podcastwhere would they go?
Speaker 2 (37:30):
So they can go on any podcast platform and look for
the Caregiver's Journey, or goout on the web and look for
thecaregiversjourneycom and theycan find us.
That way They'll see us righton the front page.
They'll recognize us.
Speaker 1 (37:48):
I love that.
Thank you so much, you guys,for coming on the show.
I really appreciate it.
It was such a wonderful,stimulating conversation.
I appreciate the work thatyou're doing.
Thank you so much.
Speaker 3 (37:57):
Thank you for inviting us and thank you for
your excellent questions andpreparation, and thank you for
bringing a message that willimpact so many people who follow
you, because it's touching somany of their lives.
Speaker 1 (38:09):
Thank you, thank you you guys heard it here on Glow
Up With Shaman Ice is.
You know, take care of yourselfso you can take care of the
loved ones in your life.
If this is your first time here, you must subscribe.
It's intelligent listeningwhich we need more of in this
world today, so please subscribe.
If you're not familiar with mywork, I'm spiritual teacher and
three-time bestselling author ofShaman Isis, also known as
(38:32):
Cynthia Elliott.
To my friends and family, govisit shamanisiscom.
You can check out the events,speaking tours and all that kind
of jazz I have going on and, ofcourse, you can order my stuff,
because, you know, got tosupport the work we're doing
here to teach other people howto raise their human
consciousness and learn how toshow up in life in the in the
driver's seat.
I love you guys.
I'm wishing you a beautifulweek.
Thanks again, ladies, and Ilook forward to seeing you in
(38:53):
the future.
I just know we're going to berunning into you too again.
Well, definitely.
Speaker 3 (38:58):
We're looking forward to it, thank you.
Well, hello, hello, hello.
It is Shaman Isis.
Welcome to Glow Up with ShamanIsis.
I'm also known as CynthiaElliott if this is your first
time here, and I'm psyched Ihave not had two people on the
podcast.
I don't think I've ever had twopeople on the podcast at one
time.
I'm so delighted to have theladies from the Caregiver's
Journey, Nancy and Sue, heretoday.
Please say hello to ouraudience and then tell them what
(00:26):
you do.
Speaker 3 (00:27):
Hi, it's very nice to meet everybody.
Speaker 2 (00:30):
Yes, wonderful Thanks for having us.
We really appreciate it.
Speaker 3 (00:33):
Yes, we do.
Speaker 1 (00:34):
Yeah, yeah, so I we, before we started recording, we
were talking about the work thatyou guys do for your nonprofit.
Uh, can you guys share for justa minute?
Give them the them the couplesentences on really what you do.
Speaker 2 (00:47):
Sure, we're focused on delivering resources that
help dementia family caregiversmanage day-to-day dementia
caregiving challenges, becausewe went through that and we both
cared for multiple people withdementia over the course of our
lives and most recently ourhusbands and found a lack of
(01:08):
really practical tips on how tohandle common things that were
happening.
And Sue went through it firstand so thank goodness I have a
friend who had been through this.
So I called Sue many times inmy husband's dementia journey
and asked for help and advice.
But not everybody's got a Sue.
So we set out to create a wayfor dementia family caregivers
(01:34):
to get the practical advice theyneed to handle what they're
committed to at home or in acommunity, actually, either one.
Speaker 1 (01:42):
I love that you're doing this.
I think this is a conversationthat really has to take place on
a higher level in this countryand that not only are we not
talking about how we're caringfor our elderly or people who
are sick, it's sort of like it'salmost like a dirty little
secret in this country.
And then when you get and thisis my opinion, obviously I'd
love to hear you guys point ofview I don't.
(02:03):
I really don't feel like we'rehaving that conversation about
the fact that the system inAmerica is not really structured
.
Well, we could have a wholeconversation about the
healthcare system.
What a hot mess it is, but it'snot really set up to support
people in America who are goingthrough something like the
caregiver's journey, taking careof people who have dementia.
Do you guys agree with that?
Speaker 3 (02:22):
I'd say yes, and in many ways, one of the things
that we're learning about isthat more and more the voices
are raising about it, so thatthere's more of a groundswell
right now, and there hastraditionally not been much of a
groundswell, because so manypeople who are caregivers are
also working in businesses andmany businesses don't identify
(02:43):
and recognize family caregivers,and because of that, the
employees don't self-identifyand so they don't share with
other people that they arecaregivers.
And then another part of it hadhistorically been the stigma of
it that there's the familymember and we didn't want to
share what's going on with thefamily member, and then, kind of
, the third leg of the stool iswe live in a country that has
(03:08):
diverse cultural communities andfor some of them they aren't
caregivers.
This is just what you do.
This is family, and so it's ablend of a variety of different
things.
As the baby boomers are agingout of being able to be
caregivers and they're nowbecoming the care receivers, the
(03:29):
impact and the stress israising the need for us to
communicate openly about thefact that people are caregivers
and find better wayssystematically throughout the
country and in businesses and inhomes, to support family
caregivers, and that's part ofthe reason that we're so vocal
with providing the support weare is to help be one of those
(03:52):
really responsible voices forcaregivers Once they're seeking
support.
We want them to know that we'rea trusted resource they can
come to to get answers toquestions they may not even know
to ask.
I definitely don't know to ask,yeah.
Speaker 1 (04:08):
Yeah, you bring up a lot of really good points there.
One of my biggestdisappointments in the way that
America has kind of unfolded isthat our healthcare and
insurance systems are socorrupted and the price of care
of any kind has become so absurdand outlandish for the vast
majority of Americans,especially given the economy and
(04:28):
what's going on with employmentnow.
Combining that with the shameof having to actually personally
take care of somebody becauseyour system or your structure
within your family doesn't allowfor there to be support.
And then most businesses treatthat in a very sort of
subconscious way, the same waythat they do women needing to
(04:50):
take care of their children,like keep that at home, don't
bring that to the office, that'syour private information.
Or if you do bring it up, thenyou can't possibly be doing a
really good job at your jobbecause you have this other job
at home.
I mean I think it's a reallyinteresting dynamic that speaks
to a lot of the systematicissues that we have here, but
(05:10):
also just the cultural issues.
I mean we have some cultures,like you mentioned, talk about
multicultural America becomingmulticultural and there being
multi-families in one householdbeing parts of cultures that
have become more dominant herein the States, but still the
vast majority of people in thiscountry don't actually live in
the same household with theirparents, their grandparents, and
so there's a there's a lotthere to unpack.
(05:32):
So when you to backtrack forjust a second, when you two,
firstly, this was inspired.
The caregiver's journey, thepodcast and the work that you're
doing was inspired because, sue, you went through it first and
then Nancy was going through itand contacted you for help.
Do I have?
a spam and it just sort ofunfolded from there.
Speaker 3 (05:51):
It did.
Yeah, my first caregivingjourney began when I was in my
mid twenties and I've had anumber of them over the last 40
years.
And you, you know, I didn'tself-identify, never
self-identified in in work.
It wasn't appropriate at thetime, it would have altered the
trajectory of my career and then, as Nancy was going through
(06:11):
hers, it was really so fortunate.
It's interesting you wouldn'thave planned that this brought
us together.
You know, they say in themoment of an experience you
can't possibly know if it'sultimately good or ultimately
bad.
Speaker 2 (06:37):
And something that was challenging for both of us
has led us to create somethingthat we hope is creating
something, having been friendsand neighbors, but to reconnect
and be able to just be on thesame wavelength.
So much of what we do all day,every day, we're on the same
wavelength.
We have a conversation, we knowhow to challenge each other
respectfully, but I think thatcreates a really great end
(07:03):
product and that's the responsewe've been getting from the
market at large and from ourlisteners is that we hit the
nail on the head and they'regetting the kind of information
that they need and, in the end,our only objective is to help
support dementia familycaregivers A simple objective.
Speaker 1 (07:19):
What are some of the main issues that you
consistently see that peoplestruggle with when they're on
that journey?
Speaker 2 (07:26):
So let me start with something.
Sue and I often say that whathappens when a loved one gets a
diagnosis is you go to theneurologist, you know something
might be wrong, you'resuspicious, they meet with the
neurologist and what happenswhen they get?
You come out of theneurologist's office, the
neurologist says they've gotdementia and you go home with a
(07:47):
bunch of medication orconversation around the person
living with dementia and howwe're going to progress through
their journey with the doctor,but there's nothing that the
family caregiver goes home withon how to be a caregiver.
Not only that, a lot of peopledon't even identify as a
caregiver.
They don't think about that astheir role.
(08:09):
So there's just the beginningof the process, which is how do
we help people know they're acaregiver?
And then, once they do, how dowe help them get started
understanding what's coming andhow do they put, how do they
leverage what's coming to figureout how to manage things at
home with more confidence, morepatience and more peace of mind,
(08:32):
and that will help them createa better experience for the
person living with dementia aswell.
You'll be a better caregiver,and if you're a better caregiver
, the person living withdementia is going to get better
care, mm-hmm, and that's kind ofhow it all ties together.
Speaker 1 (08:48):
Yeah, from my own experience, you know I've I've
cared for several people over mylifetime as well, and when my
sister was dying of um uh,cancer, she got from being a
prostitute, uh, we grew up incare in an orphanage and when
she got sick, it was, it was, itwas.
There was a lot going on.
You know, I had to go get herfrom the crack house and then
(09:10):
get her off the drugs and gether into care and and the
emotional and mental trauma thatI was going through as an
individual was something I couldnot get any help for from my.
I couldn't even talk to her.
They didn't even.
They weren't there.
I mean, and that was obvious,they were there to take care of
my sister, but I it was likethere were no resources, there
was no conversation, stress theguilt that I felt about being
like, oh my God, would you stopscreaming.
(09:31):
You know, like you know, whenshe was in pain and and I so, I
know that experience that wedon't talk about, which is the,
the, the emotional experiencesthat you have when you're
caregiving, that nobody wants tomention because of the shame
attached to not always beingable to handle it perfectly.
So true.
Speaker 3 (09:49):
And part of it is the shame and which is unfortunate
because that's really not thecorrect motion.
But they don't know what emotionto have, and one of the things
that we try to raise the levelof awareness of is it's
reasonable you wouldn't know howto feel, and it's reasonable
you wouldn't know what to do.
And it's reasonable youwouldn't know what to do because
you didn't go to school forthis and you didn't come out of
the meeting with the doctor witha guidebook of things to do.
(10:11):
And so we associate emotionsbased on things that we have
what I call a referencereservoir what we've observed,
other people have done, and soyou say, well, this is what they
did, so this is what I shoulddo.
They don't know how to feel forthemselves, and often they
attach an incorrect emotion forwhat they're feeling.
So where they say that theyfeel guilty, well, I don't know
(10:33):
who's looked up guilt.
They're angry, but they don'tknow how to process it.
So part of what we're doing ishelping people understand.
It's okay not to know, andwe're going to help you figure
these pieces out.
(10:53):
And then another huge part ofit is part of the reason they
don't know is well, they'venever done it and they don't
even know who to ask.
And what we do is we connectpeople with resources that will
help them get answers toquestions they don't even know
who to ask.
And what we do is we connectpeople with resources that will
help them get answers toquestions they don't know to ask
.
We recently had an episode withtwo very experienced elder law
(11:16):
attorneys and the things thatthey were introducing people to
that you wouldn't know if thishadn't been a part of it and the
things, for example, there are.
The elder law attorneys that myhusband and I worked with
changed the trajectory of ourability to provide care and to
understand the process and tomake the wisest choices while we
(11:38):
still could, to be able to putus in a position to provide care
, and so a lot of it is justpeople don't know, and that's
really sad, but that's thereality of it.
It's easier to find informationnow online, but you're like,
well, what do I search forExactly?
Speaker 2 (11:58):
And the other thing is, if we find at least the
response we get back fromlisteners.
Listeners is, if we give peoplethe essential knowledge that
they need, they're moreconfident.
And if they're more confident,then they just they get a piece
about them which keeps thisguilt and and you know
continuous beating yourself up,which is what happens when
(12:20):
you're trying to, you'restruggling with I don't even
know what to do, cause if you'dknow what to do to help your
sister, you would have done it,but instead you don't know what
to do, so you beat yourself upand you're frustrated and upset
and angry.
And that's very similar to whathappens with dementia family
caregivers.
They don't know what to do,they get frustrated.
Very, think of the same person.
If that person asks you thesame question over and over and
(12:40):
over again, it'd be pretty easyto get frustrated.
But you know they, you don'tunderstand why they're doing it
and you don't understand whatyou're supposed to do to help.
And so the more information wecan give people, the easier it
is for people to to live in thatuncomfortable, difficult
situation.
Speaker 1 (12:58):
You know your shares on both of your shares on that
actually bring to mind somethingthat I think is kind of an
interesting angle, and that iswe're not taught emotional
mastery and we're not taughtmental fitness.
In our world we are taught tobe victims, we're taught to try
to align with perfectionismbecause we live in a world that
(13:21):
sort of is laid out in a waythat you're sort of expected to,
to know or understand thingsand without teaching people
emotional mastery.
There there is the guilt andthe shame because you don't
understand.
You don't understand, you feelguilt and shame about not
knowing what to do or not doingit perfectly, and it's a very
subtle thing.
So I teach people how to raisetheir human consciousness and at
the bottom of humanconsciousness the lowest
vibration is guilt and shame.
(13:43):
And then it gets to.
You know things like, you knowanger and you know it's all fear
based and it is and andteaching that would be such an
interesting thing is like sayingyou know, here's some emotional
mastery, because beginning tounderstand why you feel that way
, like at times when I would getangry- and my sister she's
dying and I know she's dying.
Speaker 3 (14:03):
And you're angry.
Speaker 1 (14:03):
And I'm getting angry , and I'm getting angry at
myself for getting angry.
Speaker 3 (14:07):
Yes, yeah, because you don't know and you don't
know what to do.
So it's easy to put the labelof what an emotion is on it,
when really, if you were able tobreak it down or have a
conversation with someone, youwere fearful for your sister,
you were frustrated because youdidn't have answers, you didn't
have a clear path, so it gets tobe overwhelming and it just
(14:30):
keeps snowballing, and so,actually, you're not angry at
your sister, you just don't knowwhat to do.
And we're providing the answersto questions people don't know
to ask or where we're talkingabout topics, we talk very, very
(14:51):
specifically and give theseanswers.
And this is the reason why whatyou're bringing up is exactly
why we have the format that wehave and we call it these
practical tips and candidconversations, because we want
people to be able to beempowered with answers to things
so that they can take action.
And then the other part of itis that when you're in that
(15:14):
journey and you've never done itbefore if, if you hear
something, if you listen to thepodcast episode and you go, aha,
I know someone.
We have had people who have sentus messages in response to one
of our podcast episodes that arelike I shared this because they
were going through it, and soit's raising the level of the
(15:34):
consciousness of the planet, andthat's something that you do.
There are a variety ofdifferent ways we can do that,
and in our own little corner ofthe world, this is what we're
doing, because so many peopleare impacted by it, and both of
us, when you take our collectiveyears of experience and variety
of kinds of experience we'vegathered, it's not wisdom until
(15:55):
we share it.
So we've got all of this andwe're sharing it to be able to
touch other people's lives.
Because, you know, nancy and Iboth talked about this, noah, so
I'm not speaking for her.
For her, we didn't know what itwas.
You know we were strugglingwith it too.
Speaker 1 (16:14):
Wow, I love the way you just said that.
That was really beautifullysaid, Thank you.
So dementia is, I find itreally interesting In Europe.
It's my understanding that theyare.
They believe that it is thethird level of diabetes or that
it's related to diabetes, whichI find it very interesting.
Speaker 2 (16:36):
I think they're over that.
I think I read something aboutthat that just recently, but I
think they're getting over that,so yeah, I'd be interested to
see what's going on with that.
Speaker 1 (16:43):
But dementia has its own kind of really interesting.
So my ex-husband, hisgrandmother I remember her going
through that and it leading toher eventual end and and
watching like getting calls inthe middle of the night and
having to go find her in thestreet because she was running
exactly in her nightgown.
So what are some of thoseissues that you deal with,
specific to dementia, that arechallenging in the caregiver
(17:03):
journey, that you wouldn'tnecessarily see?
Speaker 2 (17:07):
So behaviors is a perfectly good example.
I want to go home is such atypical one that people try to
deal with, which is, you know,all of a sudden it's late in the
afternoon.
That's when people withdementia typically.
Sundown is a common term.
Tired brain syndrome is whatSue calls it.
But they're tired and sothey're struggling so much to
(17:28):
figure out how to live allthroughout the day and just keep
up with.
They're confused, it's cloudyin there and they're just doing
the best they can, and they'reexhausted and so they lose their
ability to be in touch withreality, and so it's not
uncommon for them to havedelusions in the afternoon
particularly.
I want to go home's a good one.
Someone stole my wallet.
There's so many that are sotypical.
(17:49):
It's unfortunate.
But when you understand thatthat's how that's happening, why
that's happening and then howto actually get through it.
So we have a podcast on how tohandle delusions, so that you
understand how to get through it.
We did five podcasts onincontinence, from how to know
it's starting and how to getprepared for it to how to change
(18:12):
someone who's bed bound,because most people have no
earthly idea how to handlesomeone who's an adult who's got
incontinence, and so there's alot of information they needed
to know.
Wandering, as you described,with your grandmother another
common behavior that needs to bemanaged, and here's things you
can do to prevent it.
And here's how you search forsomeone.
(18:34):
If someone with dementiawanders out of your house,
here's the process you should gothrough to start the search.
So just so many examples.
I can't even start with bathingand dressing and brushing teeth
, because people with dementialose their ability to do all of
that, and so, as a familycaregiver, you have to step in
(18:54):
and help.
Speaker 3 (18:55):
And one of the things that can be so hard on that is,
for example, with my dad, myhero.
My whole life, my dad had thesetwo lessons I'm going to teach
you how to be safe, so you'llknow what to do when I'm not
here, and I want to teach youhow to think so you'll know what
to do.
And my whole lens of my life isthrough my dad being my teacher
, being my guide, and I had awonderful mother.
(19:26):
It's not the absence of themother, but but those were the
things.
It's so hard when they don'thave access to that anymore.
It's hard for you not to thinkof them through that lens and
want that to be for them.
So you want to start there andthey don't have it.
They're frustrated and you'refrustrated, and it's it's
learning how to let go of theexpectation that they have
access to things that for theirwhole entire lives they had
access to.
So you're also it's what I calldrip grief.
(19:47):
You're also grieving a littlebit every single day when one of
those goes away or whensomething else comes.
So you have more than just theemotion of exactly what's going
on.
You've got all of thesurrounding emotions, and so
it's a complex experience forboth the caregiver and the care
receiver.
Speaker 1 (20:06):
You bring up an interesting point.
I remember being in my formergrandmother-in-law is that even
a thing?
I don't know, I'm not even surewhat to call that and she had
dementia and, as I mentionedearlier, and I was standing by
the china cabinet I happened tocollect teacups, antique teacups
, and I was looking in it andshe's like get away from that
(20:27):
cabinet.
Southerners are all thieves andit was like, and I was like who
is?
Speaker 2 (20:32):
this person I was like oh, my god and my my ex was
.
Speaker 1 (20:36):
I mean, he thought it was hilarious and I was like no
, she's demonic.
They can change personalities.
Yes, yeah, and that must bevery difficult to deal with.
Speaker 2 (20:50):
And you know what else.
I think we were talking aboutour own emotions and how they
affect our behavior ascaregivers.
But if you reverse that andthink about the person with
dementia's emotions, and whenthey act out in different ways,
they're having the same fear.
They can no longer do what theywanted to do.
They don't understand what'sgoing on.
They're confused.
That creates fear in them, andI think you even said it.
(21:12):
I'm a true believer that at thecore of all bad behavior there's
so much of it's just fear.
So they have major fear.
They don't know where they are,they don't know who's there,
they don't know what to do, theydon't know how to get home.
They have so much fear.
Then they begin acting out.
And then they're acting out ina way that no one can explain or
(21:32):
don't know how to deal with,and that's not typical of their
personality.
People are lost with how tohandle those situations because
they're not used to that comingout of that person.
So there is so much behavioronce you understand what they're
going through that you canhandle so much better because
you've put yourself in theirshoes.
You have to understand whattheir shoes look like, but once
(21:54):
you put yourself in them.
Then you can manage thosebehaviors a lot better.
And I'm not saying it's easy,that that would be the wrong
thing to imply, but you can getthrough it.
It's probably the right thingto say.
Speaker 1 (22:05):
Yeah, yeah, I'm laughing because I can see my
dog in the back.
Speaker 2 (22:09):
I can too, and I'm really laughing because that
looks exactly like the dogthat's at my house right now.
Speaker 1 (22:14):
Pickles, it's pickles .
It's actually not even mine,it's my, it's my business
partner's dog, but I've knownher all life so I consider her
kind of a kind of mine.
But uh, sit down, sorry I'llclip that out of the podcast.
Uh, so the?
Um, I was curious about the.
So, given that the average sothe average person with dementia
, is it dementia that eventuallykills them, like that's the
(22:37):
part I'm a little confused about.
Speaker 3 (22:40):
Theoretically no.
Dementia.
The diagnoses and there are avariety, dementia is an umbrella
of many different types ofdiagnoses that are
neurocognitive disorders.
So we've talked aboutAlzheimer's disease, frontal
temporal Alzheimer's, dementiawith Lewy-Boddard's, so there
(23:07):
are a variety of differentdiagnoses.
They all impact the brain'sability to do its functions
correctly.
So what typically happens issome other function in the body
can no longer function correctly.
So does it contribute to it?
Yes, is it the direct cause?
For example, heart disease is adirect cause of someone dying
of heart disease.
They they're just.
There's a direct correlation inthere and most dementias are a
(23:32):
side kind of a, if you want tocall it that.
They contribute to it, butthey're not the direct cause.
Speaker 1 (23:38):
if you want to call it that.
They contribute to it, butthey're not the direct cause.
Okay, yeah, I was.
I was curious about that Cause.
I I haven't been around itenough to actually understand
you forget how to swallow, soyou get pneumonia.
Speaker 2 (23:48):
You know those typical things that that you'd
see in other neurocognitivedisorders, where someone forgets
how to forgets how to chew andswallow, and so things go down
the wrong pipe and they getwhat's it called Aspirating.
Yeah, they aspirate and thenthey get pneumonia and then they
die of pneumonia.
So it's the most contributingfactor, but it's definitely
(24:09):
causes them to die of something.
Speaker 1 (24:12):
Is it my imagination that I don't recall a lot of
people having dementia when Iwas young and I was very aware?
I mean, you grew up in the, inthe system, you trauma aware,
like you're always studyingeverybody's behaviors, engaging,
so I was very aware of people,especially older people.
I don't remember being around alot of people with dementia.
Is it my imagination that itseems to have increased?
Speaker 3 (24:32):
there are.
There are several things.
One, yes, it has increasedexponentially.
The second thing isgenerationally, it was not
discussed, there was not a lotof information about it, there
was not a lot of awareness of it, there was not a lot of
understanding about it, therewasn't a lot done about it.
People would say, oh, he'ssenile?
Speaker 2 (24:50):
Yeah, well, that means he had dementia, right?
But remember hearing somebodysenile.
Speaker 3 (24:56):
Oh, they're a little off, and people did not talk
about their loved ones.
You didn't see them anymore.
They didn't talk about theirloved ones.
They didn't.
You know, it wasn't somethinglike now when people have a
diagnosis dementia they're goingto the grocery store with you
and you're talking about andthere's much more of an
awareness of it.
So the prevalence of it hasincreased and the awareness of
(25:17):
it has increased, and yet yet itwas.
It was around.
It also was not very wellunderstood.
Speaker 2 (25:23):
Yeah, but it is increasing.
Just so you know the stats inthe U S there's about 7.4
million people living with sometype of dementia in the Americas
or in the U?
S and that's and it's 2025.
That's expected by 2060 to be14 million people, unless we can
fix this disease.
Speaker 1 (25:42):
Yeah, yeah, I know, you just gave me chill bumps, I
know Not pretty.
Speaker 3 (25:46):
It gives everybody chill bumps because, on the
other side of it, the pool ofavailable family caregivers has
gone, not too many years ago,from seven to one, down to a
little less than four to one now, and it's by 2050, I think it
is it's going to be down toabout 3 to 1.
And many of those are becausethe baby boomers are now
becoming the care receivers, andone of the other challenges is
(26:08):
because many people have stoppedcoming into the United States
to provide the kinds of jobsthat included being family
caregivers.
We're having an increasingcrisis in finding family
caregivers, so at the same timethat we are, we have more people
aging to become the pool ofpeople diagnosed with yeah I'm
(26:34):
sorry, thank you for correctingit Paid caregivers, yes, so at
the same time that we'resignificantly diminishing the
number of available familycaregivers, we are exponentially
increasing the need for paidcaregivers, at the same time,
where some who live heredomestically are like I'm done,
this is hard work and I'mfinding something else because
(26:56):
it doesn't pay well or I am notcoming into the United States to
have that job, and so we have acountry where we have not
figured out that solution yetand over the course of the next
20 years.
It's going to be somethingthat's way, way, way in the
forefront of issues beingaddressed.
Speaker 1 (27:14):
Yeah, absolutely.
You know the way that Americanand I understand just from
having written A New Americandream, which is the book I wrote
about studying the Americandream, its origins in the
post-World War II and they wouldtake care of each other.
It was this idea that living onyour own was really so
(27:42):
important, but it actuallydisenfranchised us from family
and from care.
And then we built this healthcare system that designed these
awful homes.
I mean, I I volunteered in alot of them growing up and it
was I was appalled 20, 30 yearsago, and they seem to have just
gotten worse.
We do not handle aging in thiscountry.
We do not take care of ourelderly in the way that you see
(28:04):
in other countries.
Just the honor in which it'streated to age is an honor, and
to take care of somebody who'saging is an honor in some other
country Not every country, butin other countries.
And here we're just a hot messand we've got this massive
number of people who are, whoare going to need care and we
don't have, as you so wellmentioned, we don't have the
caregivers, we don't have thesystem, and what systems we do
(28:27):
have are really built to to rapewhat wealth anybody does have
from them, like the pricing andthe cost of just getting an
aspirin when you're in.
I'm losing my adult care.
I forget what what the centersare called when it's elderly
care and they spend like-.
Speaker 2 (28:41):
Senior centers.
Speaker 1 (28:42):
Yeah, the senior centers are a horror show.
I mean, they're not much betterthan prisons.
Speaker 2 (28:47):
We are getting there is hope on the horizon just from
a Medicare perspective, becausetraditionally in order to have
any support from the USgovernment you had to be on
Medicaid and that was you couldget some support.
Every state's different how muchsupport you can get, because
Medicaid is different everystate.
(29:07):
But there is right now a pilotprogram with Medicare that is
focused, at least in our world,on dementia world, on dementia
family, on people living withdementia, on providing some
level of education and supportfor the family caregiver of the
person living with dementia, inaddition to providing medical
(29:27):
support for the person livingwith dementia.
So it's being piloted right now.
It's a six-year pilot where asmall number of organizations
are involved in it.
Now In July another 300organizations come on board to
continue the pilot and grow it.
And fingers crossed that weprove that it's worth our while
(29:49):
to support not just the personliving with dementia, but that
Medicare insurance is worth themspending time and money on
educating the family caregiverson how to support the person
living with dementia.
So that is a bit of a brightspot.
It's it's a pilot and it'sobviously has a lot of work to
do, but there's hope, at leastwe're trying.
Speaker 1 (30:12):
Yeah, I, I try to, I try to be hopeful, the we.
We really need a massiveoverhaul of of just the way we
go about a lot of things in thiscountry, and I love I mean I
love america, I'm very patrioticbut we have some serious
systematic issues that needaddressing.
The way a country treats itshomeless, it's sick, its
children, um, and its elderly isvery telling, and in america we
(30:35):
don't actually take care of ourpeople.
The greatest country in theworld does not take care of its
people, and I can't help butwonder if that's not about
hierarchy and reinforcing asystem that if you just keep
working harder, you'll be okay.
I love the work you guys aredoing.
It's incredible.
Not everybody has someone thatcan actually help them, and I
(30:57):
say this as somebody who grew upin the system, so obviously my
perception of it is going to bea little bit skewed, but it's
like you know who's going totake care of me and in the
system that we have right now,and I don't see how that's even
possible without being in anawful situation or less ideal
than it should be.
What would your advice be tolike?
(31:17):
Just what are some of yourfavorite bits of advice for
people who suddenly findthemselves on the caregiver's
journey.
Speaker 2 (31:23):
First, understand that when you get, when your
loved one gets, a diagnosis ofdementia, you just got a
diagnosis of caregiver andyou're not just a caregiver for
that person, you are a caregiver.
If you're the primary caregiver, you're a caregiver for you as
well no-transcript.
(31:59):
What would you say?
Speaker 3 (32:02):
I completely agree is that on the journey it's
important for us to prioritizethe fact that we never have to
be alone.
There's help all around us.
It's reasonable we wouldn'tknow the answers to questions.
Diagnosis one of the greatplaces to start is looking for
(32:25):
support groups in your communitythat support the diagnosis and
start asking questions, becauseone of the things I mean, nancy
and I, are passionate aboutsharing the messages.
There are people in communitiesthat may not choose to do that
through the medium that we'redoing it, and yet they will go
to support meetings all weeklong and share their lessons.
And so, whatever the diagnosisis, help is all around, and so
(32:48):
often we hear from people thatthey just feel so alone and so
isolated.
You don't have to reach out.
And if you can't find anybody,reach out to us and we'll help
you find somebody.
Speaker 2 (32:57):
And you know what.
We're circling back around towhere we started, cynthia, and
that is don't feel shame andguilt when you don't know what
to do.
Right, that's where we startedand it is so reasonable.
You don't know what to do anddon't shy away from asking for
support and asking for help andfinding support and finding help
(33:20):
.
You don't just have to ask.
Go find it, you know.
Go find a support group.
There's good online supportgroups as well.
Obviously, we encourage you tocome out and look at the
caregiver's journey website.
You can go see a blog or apodcast about almost any topic
you can come up with.
There's this little search barin there.
You can search based on your,your question, and you can
(33:40):
probably find a podcast or ablog on the topic to help you
question, and you can probablyfind a podcast or a blog on the
topic to help you.
But, but whatever it is, lookfor support and reach out and
don't feel guilty because youdon't know.
Speaker 1 (33:50):
Right, yeah, that's wonderful advice.
I would add to that too, assomebody went through it.
It is okay.
All of your emotions are okaywhen you're going through a
situation like that.
You will have times when, whenemotions will surface that the
you know the perfect, theperfect version of you wants to
give you crap for, and you knowwhat it's a it's a unique
(34:12):
situation with somebody who'snot behaving like their normal
selves.
Speaker 3 (34:16):
Right.
Speaker 1 (34:16):
And it creates some strange dynamics where you're
going to have moments whereyou're like, oh, I can't believe
.
I just thought that it's okay,you know.
Speaker 3 (34:23):
Yeah, you're like, oh , I can't believe.
I just thought that it's okay.
Yeah, and I think one otherthing that I would prioritize is
that it is so easy for us toflip the script incorrectly,
which is one of the mostimportant things we can do to
care for our loved one is tocare for ourselves.
That prioritizing our ownself-care and both Nancy and I
have done this, where we'vechecked that off of our list in
(34:44):
order to provide more care forour loved one, and both Nancy
and I have done this, wherewe've checked that off of our
list in order to provide morecare for our loved one, and then
we're not.
We don't have the capacity toprovide that level of care.
So self-care looks different foreveryone.
If you struggle with withcaring for yourself, if you feel
like, like I used to shave up,well, I don't need to, I can get
an hour less sleep, I can dothis, this, this.
So when you keep shaving thatoff can get an hour less sleep,
(35:04):
I can do this.
This is when you keep shavingthat off.
There will come a time when youhave shaved off more than you
can and if you feel like you,you have.
Or if you don't feel like youcan practice self-care if you
don't have a connected emotionto give yourself permission to
practice self-care.
Get an accountability partner.
Get someone else who can helphold you accountable for
practicing self-care, becauseself-care is you doing it and
(35:27):
nobody else can do it for you.
They can help make sure you doit.
But if you, the consequences ofyou not practicing self-care
are bad for you and your carereceiver.
Speaker 2 (35:36):
Right, and Sue always says give yourself grace.
Give yourself grace, and everytime when we're talking about a
topic in our podcast we'll getto the end of the topic and my
goodness, I can't believe.
I just thought that.
But give yourself grace,because this is a long, hard
(36:09):
road and, honestly, you're notexpected to know how to do it
perfectly.
No, one expects you to do itperfectly.
Give yourself grace.
Speaker 3 (36:16):
Is there anything perfect about it?
Speaker 2 (36:18):
No, it's what you'd call a perfectly imperfect
journey.
It is the most.
It will be imperfect, no matterwhat Right.
Speaker 1 (36:29):
Ladies and gentlemen, make sure that your cup is
overflowing.
You know you can't keep pouringinto other people when you're
taking care of them If yourcup's not overflowing, and give
yourself grace is such animportant one.
That's one I really I've reallystruggled with.
I had a terrible self-loveprogram for a long time, uh and
uh.
I think it's the most powerfulthing that any human being can
do to show up the mostbeautifully that they can and
build the most wonderful lifeexperience for themselves,
regardless of your circumstancesand repeat that last part
(36:54):
regardless of your circumstance.
Learning learning how to behappy is not about having a
perfect life.
It's learning how to deal withall the crap that's actually
going on in your life with thebest attitude possible.
Speaker 2 (37:05):
That's a great message to dementia family
caregivers too, because it youknow, it is a difficult journey
and and you've got to find a wayto find joy in life, because
you can't just say, oh, I'mgoing to put these 10 years
aside and be miserable.
That's not the not the way tolive.
Speaker 1 (37:20):
I love that.
Oh, thank you so much If ourlisteners excuse me, if our
listeners wanted to learn moreabout you guys and the work that
you do and find your podcastwhere would they go?
Speaker 2 (37:30):
So they can go on any podcast platform and look for
the Caregiver's Journey, or goout on the web and look for
thecaregiversjourneycom and theycan find us.
That way They'll see us righton the front page.
They'll recognize us.
Speaker 1 (37:48):
I love that.
Thank you so much, you guys,for coming on the show.
I really appreciate it.
It was such a wonderful,stimulating conversation.
I appreciate the work thatyou're doing.
Thank you so much.
Speaker 3 (37:57):
Thank you for inviting us and thank you for
your excellent questions andpreparation, and thank you for
bringing a message that willimpact so many people who follow
you, because it's touching somany of their lives.
Speaker 1 (38:09):
Thank you, thank you you guys heard it here on Glow
Up With Shaman Ice is.
You know, take care of yourselfso you can take care of the
loved ones in your life.
If this is your first time here, you must subscribe.
It's intelligent listeningwhich we need more of in this
world today, so please subscribe.
If you're not familiar with mywork, I'm spiritual teacher and
three-time bestselling author ofShaman Isis, also known as
(38:32):
Cynthia Elliott.
To my friends and family, govisit shamanisiscom.
You can check out the events,speaking tours and all that kind
of jazz I have going on and, ofcourse, you can order my stuff,
because, you know, got tosupport the work we're doing
here to teach other people howto raise their human
consciousness and learn how toshow up in life in the in the
driver's seat.
I love you guys.
I'm wishing you a beautifulweek.
Thanks again, ladies, and Ilook forward to seeing you in
(38:53):
the future.
I just know we're going to berunning into you too again.
Well, definitely.
Speaker 3 (38:58):
We're looking forward to it, thank you.
Popular Podcasts
United States of Kennedy
United States of Kennedy is a podcast about our cultural fascination with the Kennedy dynasty. Every week, hosts Lyra Smith and George Civeris go into one aspect of the Kennedy story.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.