April 21, 2025 • 43 mins
Nancy Treaster and Sue Ryan, co-founders of "The Caregiver's Journey" podcast, discussed the challenges of dementia caregiving, covering topics such as managing various stages of dementia, adapting home environments, selecting appropriate care levels, and planning for end-of-life care.
They emphasized the need for caregiver support, highlighting the lack of guidance after diagnosis and advocating for utilizing community resources and open communication. The podcast offers various resources including blog posts, ebooks, and an e-learning course to support caregivers.
Nancy and Sue highlighted the various stages of dementia and the unique needs that arise at each stage, particularly emphasizing the "messy middle" where caregivers must transition from supporting independence to managing increasing dependence and potential behavioral changes. The importance of adapting home environments for safety and considering the comfort levels and capabilities of family members involved in caregiving was also stressed.
The discussion touched on the different types of caregivers available, including companions, Certified Nursing Assistants (CNAs), and skilled nurses, along with their associated costs and the advantages and disadvantages of using care services versus private caregivers. The increasing reliance on professional caregivers, including immigrants, was noted, as well as the need for caregivers willing to handle both patient care and household chores.
End-of-life care and planning were addressed, with a strong emphasis on early conversations, utilizing hospice services, and addressing legal matters.
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They emphasized the need for caregiver support, highlighting the lack of guidance after diagnosis and advocating for utilizing community resources and open communication. The podcast offers various resources including blog posts, ebooks, and an e-learning course to support caregivers.
Nancy and Sue highlighted the various stages of dementia and the unique needs that arise at each stage, particularly emphasizing the "messy middle" where caregivers must transition from supporting independence to managing increasing dependence and potential behavioral changes. The importance of adapting home environments for safety and considering the comfort levels and capabilities of family members involved in caregiving was also stressed.
The discussion touched on the different types of caregivers available, including companions, Certified Nursing Assistants (CNAs), and skilled nurses, along with their associated costs and the advantages and disadvantages of using care services versus private caregivers. The increasing reliance on professional caregivers, including immigrants, was noted, as well as the need for caregivers willing to handle both patient care and household chores.
End-of-life care and planning were addressed, with a strong emphasis on early conversations, utilizing hospice services, and addressing legal matters.
Become a supporter of this podcast: https://www.spreaker.com/podcast/podcasters-row-hosted-by-kingofpodcasts--5922450/support.
Contact KOP for professional podcast production, imaging, and web design services at http://www.kingofpodcasts.com
Support KOP by subscribing to his YouTube channel and search for King Of Podcasts
Follow KOP on X and TikTok @kingofpodcasts (F Meta!)
Listen to KOP’s other programs, Podcasters Row… and the Wrestling is Real Wrestling Podcast and The Broadcasters Podcast.
Buy KOP a Coffee https://buymeacoffee.com/kingofpodcasts
Drop KOP a PayPal https://www.paypal.com/donate?hosted_button_id=3TAB983ZQPNVL
Drop KOP a Venmo https://account.venmo.com/u/kingofpodcasts
Drop KOP a CashApp https://cash.app/$kingofallpodcasts
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:08):
Welcome to podcast is row. This is King of Podcasts
here with you. Appreciate all of you joining us here
at the program wherever you find the program, whether example podcasts, Spotify,
Amazon Music, YouTube, YouTube music, iHeartRadio, all the places, and
of course it all emanates from Kingopodcasts dot com. And
thank you again for joining us. Great guests that we
have here on the program today. I'm glad we're finally
(00:28):
getting ourselves back into the mix of getting this show
back up, because you know, it's been a little while
since I got a chance to go and get this
to momentum back up, to get more guests to go
on board. Because really it's all about those of you
that are podcast listening to the program, or those that
you know of that have a podcast, tell them to
go ahead and follow me over here. Go to Kingofpodcasts
(00:49):
dot com and just go ahead. And by the way,
to contact me, you can contact me directly through King
of Podcasts at yahoo dot com. Go right there, send
a request and we'd love to god have go on.
Because really this is just a matter of little cross promotion,
a little bit of time to talk to other podcasters,
learn about their craft and learn what they're talking about,
and for today's program, I want to welcome a team
(01:12):
of podcasters. They have combined of decades of caregiving experience
and also one of our guests having a excessive background
in the software industry. They are navigating multiple caregiving roles
while maintaining careers to provide support and resources to caregivers,
and the aim of The Caregiver's Journey podcast is to
(01:34):
help caregivers move from feeling frightened to confident through candid
conversations and actionable steps. And they've created the podcast The
Caregiver's Journey, the Phillip specific gap and existing caregivers support
with their podcasts and their offerings. So I want to
welcome to co founders and the co hosts of The
Caregiver's Journey, Nancy Treestro and Sue Ryan. Thank you both
for being on with it. Really appreciate it.
Speaker 2 (01:56):
Thank you so much. We appreciate it as well. We're
glad to be here.
Speaker 1 (02:00):
I've had much time to go and talk off air
about myself or just to get a chance to get acquainted.
But I'll tell you just for context, I live in
South Florida. More enough know that I have family that's
in the healthcare community that we are more familiar with
the process of it, you know, for people that are
looking for certified nurses, AIDS, home health AIDS and the caregivers.
(02:22):
And also knowing that I've had family members We've had
to go and take care because in my household, you know,
taking care of my father right now, he's eighty years old.
We had my grandfather, all my grandparents came through here.
I'm a family, human household, right So it's like we're
not sending nobody's in assistant living anything like that. So
the understanding of what the health care market is here,
(02:44):
and knowing if you're trying to bring somebody as a
personal caregiver to keep someone out of an assistant living
facility to still be able to go and live at
home and still function a home to some capacity with
help real quickly, I'll just leave to both of you
about what it really comes down to. That said, with
(03:05):
your decades of experience of caregiving, what you do in
terms of specifically what kind of patients are the ones
that are most needed for this kind of this kind
of healthcare, this personal caregiving, and what you focus on
the most.
Speaker 2 (03:24):
So you want to start.
Speaker 3 (03:29):
When we look at caregivers and we look at the
care receivers. The combination of that is our loved ones.
When we're looking at the diagnosis that they have. Our
primary focus because of our experience, is with care receivers
who have different diagnoses of dementia. And when we look
(03:50):
at those who are going to be giving care for them,
it is us who are as you had identified, who
are family members. And then we also compliment that sometimes
with professional help or with other kinds of help that
come in through our family to be able to provide
the care. What we're really focusing on making sure is that,
(04:13):
of course, our loved one has the best level of
care for the where they are in their diagnosis. And
what we want to make sure of, especially if we're
supporting them as a family unit, is how we prepare
each of our family members to be the best care giver.
And part of that gets to asking them what they're
(04:33):
comfortable and not comfortable with in the area of care,
and Nancy, I'm going to ask you to speak toward
that from an experience you had. And then the other
part of it is making sure that their home and
we have podcast episodes about this, but where they're living
the home they're living in is actually safe and is
actually re architected to support what they have access to
(04:57):
and what will keep them safe twenty four to seven.
So it's a blend of what those components are. And
we've talked about home safety in some of our podcast episodes,
and we've talked about wandering and things like that, and Nancy,
we've actually talked about this in a podcast episode. But
I think your specific example of the level of care
of the different family members based on what they're comfortable with,
(05:18):
would be a good response to his question.
Speaker 4 (05:23):
So first, I think, as Sude said, we do focus
on dementia family caregivers, and I would argue that that's
one of, if not the hardest kind of caregiving for
family members to have to deal with, and we keep
our family members as home as long as we possibly can.
(05:44):
It's a very demanding job for people living with dementia.
Sue and I focus our podcast episodes really on the
family caregiver, with the idea that across the world, there
are a lot of people who are first timers. They're
not trained in dementia care, their first time home caregivers,
(06:08):
and there are some very specific things, although they're common
day to day things on how to take care of
someone with dementia, that we want to make sure they
have resources to educate themselves with. So that's what our
podcast is focused on, and that's the kind that we do.
As we do twenty five minute episodes, they're very tip oriented.
(06:29):
We cover topics like bathing and dressing, incontinence, wandering, home safety,
all the little personal care grooming. How do you manage
someone who's living with dementia through the phases of their journey.
And I was fortunate enough to be able to keep
(06:50):
both my husband and my father in law in law
at home through.
Speaker 2 (06:54):
The very end.
Speaker 4 (06:55):
But these are all lessons learned either by Sue or
I or through caregiver support groups that we've been in
where we've learned lessons how to take away the keys,
you know, everything from the early stages and how to
communicate to the late stages, and how to change someone's depend.
Speaker 2 (07:15):
If they're bed ridden. So that's our that's our objective.
Speaker 4 (07:19):
And and it's really difficult to manage day to day
home care for someone who's living with dementia through the
entire journey because it's a marathon, not a Sprint and Nancy.
Speaker 3 (07:31):
Nancy, one of the one of the things that you
experienced that we talk about in our podcast that goes
toward his question is what you and Merritt had the
conversation about with when you're when you are keeping your
loved one at home and you've got family members and
what levels of care each of them can provide.
Speaker 1 (07:50):
So go ahead, George, Well, I wanted to make the
point that that distinction between a patient who has bedridden
and one that can still more or less sure, it
is just again with dimension Alzheimer's. My grandfather, for I
want to say, it was five years we had him
at home with us. My parents were still both working,
(08:10):
we were in college, and it was still with six
people in the house. And then we had, you know,
for a while, it was going to be somebody that
came in that was would check in for a time
of time, but then we had somebody that was living
with us. And I just know that, you know, for
the bulk the whole time, he really, you know, my
grandfather just could not move out. He really was bedridden.
(08:34):
We had a hospital bed brought into the bedroom here
where he's at, and you know, she at least the
other thing was, like I say, it's hard to find
a caregiver that feels like she wants to envelop herself
into the family. Where she was cooking, she was cleaning,
taking care of a lot of the household chores for
us while taking care of my grandfather. But that's something
(08:56):
that's so difficult for anyone to go and find. Now
and then at the same time, I'm going to do
as much detail because all the time about my family,
but for other family members of people I've worked with,
where there was somebody that I'll say that she was
going through But prior to this, I mean she was
what her late seventies completely, I mean in great shape.
(09:20):
First of all, it was very athletic, very health conscious,
a lot behind that and you know, moves around. You
wouldn't have ever thought that she was dealing with anything
with dementia of Alzheimer's. But yeah, the problem was is
that the caregiver for that, you know, while she can
move around the house, the patient, the caregiver was just
(09:43):
not good and not prepared to good handle when things
got awry. And also because the family members that left
that caregiver to that patient were not around like they
were just hoping that the caregiver could just basically take
care of the bulk. They didn't want to have the
assistic facility, but they wanted to do something to still
(10:03):
keep them here and still feel like there's a way
to turn around the effects of dimension, that maybe there's
some way to find certain treatments to you know, enhance
cognitive functions, something to bring them back to where they were.
Because that's the part that what I want to get
is just a little bit of take of that difference
between when someone is bedridden and the level of care
(10:24):
that you had to work on for the most part,
what is the most common form of care that caregivers
have to be prepared for that you hear about and
you talk about the.
Speaker 4 (10:34):
Most So it's says talking about we see a lot
of family caregivers managing for the first few years of dementia,
where family members are able to even maintain their jobs
and just support the person living with dementia and support
their independence as best they can. Lots of people put
cameras or things in their house so they can keep
(10:56):
an eye on things with, you know, and often they'll
tell the person living with dementia that this is a
way that we can help you maintain your independence, so
you know you can stay here by yourself a little
bit longer, even if the person's going off to work.
So for the first few years you can usually live.
You can just support the person. But somewhere in the
(11:16):
middle Sue and I coined. Sue coined it, I just
have absolutely adopted it called the messy middle. It's when
you stop supporting the person living with dementia and you
have to assert control over what they're doing. And unfortunately,
that's when the person living with dementia thinks they still
know how to make decisions, and you know that they don't,
(11:37):
and so you have to take over really so much
of their day to day living because they can't do
it themselves and they're not focused. They're very frustrated because
they still want to do it themselves even though you
know they can't, and you're frustrated because lots of times
you want them to still be able to do it themselves.
But at that point, someone has something has to give.
(11:58):
They can't be by themselves anymore, and either a family
member has to stop working and be at home all
the time, or you have to hire somebody to come
in and support the person living with dementia.
Speaker 2 (12:11):
They can't be by themselves.
Speaker 4 (12:13):
And these days there's more and more people who are
trained caregivers, specifically trained in dementia support. So I would
suggest if you can find someone that's got at least
some level of training for dementia support, that would be
a positive. But in the messy middle, it can get really,
really tricky because people living with dementia get frustrated, they
(12:36):
get angry, they get aggressive because they're scared because they
don't know what's happening. They don't understand why, they don't
know to what's going on. They often find that they're
in a they're confused, they don't know where they are,
they don't know who you are, they're petrified, and so
they get aggressive and angry, and that it's very.
Speaker 2 (12:58):
Difficult to to get through that process, either as a
caregiver or a family member.
Speaker 4 (13:04):
It takes a lot of extra beyond you can even
imagine patients and really education because I think you build
confidence when you know what to expect, which is part
of why we have our podcast is to help people
build confidence so they know what to expect so that
it's not so scary as the caregiver to know how
to handle these different situations.
Speaker 1 (13:27):
So now both of you collectively, you live in Georgia
and Florida, so warm weather climates. I don't know those
for a lot of us that maybe it's just me
that looks and precedes it this way, but a lot
of the best healthcare we've always heard from Florida or
Arizona from warm weather climates. And if you have a
patient that is for dementia of Alzheimer's and you're not
(13:50):
in an area where as a warm weather climate. For
whatever reason, it's always been the thought where I guess
unlikes the best disinfected, and then the same thing goes
for recovery. All there's various treaments that always feel the
best healthcare comes from an area where you have these
kind of climates. Do you ever notice there's a difference
where if you're looking for a good caregiver it is
best to try to look if you can. I don't
(14:12):
know if you can relocate or if you can do
something where you find some way to create that kind
of climate for I mean, I don't know if that
makes it a sense or not, but.
Speaker 3 (14:23):
I think, yeah, I think to your point, one of
the things that helps in the stability of especially with
the diagnosis of dementia, when we have a loved one
who is beginning their journey is the familiarity. One of
the last things you want to do is to get
them out of their routine. The more that you keep
them in a routine can keep them with what they're
familiar with, their surroundings, the people who are there around
(14:47):
things like that, the easier it's going to be. What
you have when you're bringing in caregivers is that we
have a significant decrease in the number of people who
are actually family member. It used to be there was
a ratio of about seven to one family caregivers to
each individual. Now that we have more and more baby
(15:08):
boomers becoming the care receivers, that pool of available family
caregivers is down to about four to one, and it's
going even farther down to about three to one in
the next few years. We also have from an employment perspective,
it's just where you're going to get the professional family caregivers.
We have fewer people here in the United States who
are going into that as a profession, so we have
(15:31):
more and more people who are emigrating from other countries.
They're less concerned about where they go to live because
this isn't their native country. They're more concerned with where
they have an opportunity for employment. So as we look
to our pool of available family caregivers, often coming from
people who have entered the country in order to beat
(15:52):
family caregivers, it's not as much a location thing. So
I think you're okay no matter where you live. You
want to get your loved one in a routine and
then find people. One of the things that's great is
there are in many, many communities there are organizations. One
of the ones we work with as an organization called
(16:12):
Senior Care Authority, and they have connections with communities and
with people who serve as caregivers in the hall or
in communities and all different kinds of options. So in
your local community you have access to people who can
connect you with that you don't pay them a fee.
The company that caregivers work for or the care community
(16:35):
is who pays them a fee. So they are really
a great resource no matter where you are in the
country to try to support you. Because part of the
thing is, like I know, I never looked for a
caregiver before I hadn't gone to school for being a caregiver,
so I didn't have a class one on one on
how to find caregivers so we can get support. The
other place to get support for that wherever you live
(16:56):
is through support groups that are local to your area,
and people will give you names and references. So again,
I think in the summary of it, it's that you
do want to keep your care receiver in their environment
as much as possible and find resources that surround them
in your area.
Speaker 1 (17:13):
And I said, saying, I'm a complete novice on this.
I'm happy to say this. I know my thing about podcasting,
but when it comes to this here, it's really on
the outside looking in and just saying from being where
I live and noticing how many snowbirds we have here
on a regular basis that will flock down this way
this time of year as we speak, and I mean,
I've gotten a chance to go and look into what
(17:35):
various caregivers I've seen that have been on the extreme
great side of really people pleasing caregiving compassion to the
other side of just complete neglect. I've seen both sides
of that. And you know, one of the things I
do part time is I'm an uber driver and I
can't how many times where I go to a doctor's
appointment for a patient just the other day, you know,
(17:56):
I was a lady that was no walker coming out.
I don't think there was anything in terms of any dementia.
L Summer's just a matter just more of meaning to
someone to go and help out because you're much older
and we can't try it, can't go around. But it's
one of those things where just I could tell like
the treatment of the caregiver was like, I mean, you know,
the probably won't get paid enough. There are so many
(18:17):
people that come into go into nursing on a regular basis,
but they don't opt to go into caregiving. They would
rather go into becoming an RN or a nurse practitioner
and not opt for home health care or certified nurses Aid.
Is there anything that you see there where there are
obviously a lot of great professionals that would be qualified
(18:38):
and easily could go ahead and integrate into doing caregiving,
but it is a cost issue. There's not enough being
often in terms of incentive to do that. Is that
something that has changed in the last couple of decades
as you've been you know, looking at it yourselves, and
is that something that could help out in the process
of trying to bring better care to patients at home.
Speaker 4 (19:00):
You know, George, the first thing you want to do
is look at the level of care you need, because
that does affect the cost. So are you just looking
for a companion sometimes early in the diagnosis. Really you
just need a companion, someone to support them, like we
talked about, and you can leverage technology to help as well.
But sometimes you'll bring a companion and you don't want
(19:20):
them to get isolated, and that actually accelerates dementia. So
you want to make sure they stay as mentally active
socially as you can. Send them to adult let the
companion take them to adult day programs like adult day care,
or at least support them with some activities like go
(19:40):
out to lunch or you know, basically be around.
Speaker 2 (19:43):
To your point, they can cook and clean and.
Speaker 4 (19:45):
Do a lot of other stuff, but they're there as
much for companionships. That is the least expensive kind of
caregiving to get. The second one is what you mentioned,
which is a CNA certified nursing assistant, and that is
what you'll probably get as you move into the mid
stay dementia. A certified nursing assistant is someone who is
trained in changing.
Speaker 2 (20:07):
You know, incontinence.
Speaker 4 (20:08):
Underwear and you know, and from there all the way through,
and that kind of person is going to cost more.
And then the third one is when you need skilled nursing,
and that's towards the end, and in skilled nursing, that's
a third level of expense. So first you need to
identify what level of care you're looking for depending on
where your care receiver is in their diagnosis and in
(20:29):
their journey, and that'll help with expenses.
Speaker 2 (20:31):
Then you have two choices.
Speaker 4 (20:33):
You can go through a care service and that will
cost more, no question.
Speaker 2 (20:39):
But they'll do background checks, they'll do.
Speaker 4 (20:43):
They'll they'll do all sorts of financial checks, they'll pay
the taxes. You know, it's an easier way to bring
someone in, and they'll make sure if the person can't
come to work that day, that someone comes in to
replace them. So there's something to be said for that. However,
a lot of people also, especially in smaller communities. My
(21:03):
parents were an hour and a half south of Atlanta,
and so in a smaller community and everyone knows everyone
who cares for My dad had Parkinson's and everyone knows
everyone who cares for the Parkinson's people, right, so as
someone would pass away or go move into nursing home,
someone that person would free up and someone would pick
(21:25):
them up for a few hours to begin to support
their family. And so they did it all through private,
almost completely down there, and we did a little bit
of a care service for a nighttime duty, but all
through private. It costs less when you do private, but
you are responsible. If someone can't make it to work,
you either need to stay home or you have to
(21:47):
find someone else to back them up. So it's a
little more complicated and you have to deal with background
checks and being confident this person is capable of supporting
your family member. And then the same with skill nursing.
By the time you get to skill nursing, that's whole
other level of care. Usually you definitely want to go
through a care service for that kind of a person.
Those are usually not word of mouth roles. When you
(22:08):
get to skill nursing, and if you are going to
do it privately, you need well for either one. Unless
you're rushing. You want to interview the person in an
extensive level as best you can, and when you get
narrow it down to like two people, if particularly we're
talking about.
Speaker 2 (22:22):
People with dementia.
Speaker 4 (22:23):
If you can get it down to a couple of people,
then I would have the care receiver be involved in
the last couple of interviews if it's a reasonable thing
to do, and you can just see how they interact
with the person, and then whatever you do, I would
do it on a trial basis, because to your point,
they may not be a very good caregiver. All of
(22:45):
that is good due diligence, but they may not be
good at it, and they may not be as loving
as and sweet and nice as you want them to be.
And you know what, I would just make it clear
that it's on a trial basis, and I would do
I wouldn't be scared to put cameras in my house.
Speaker 1 (22:58):
I did it.
Speaker 4 (22:59):
We did it my mother, and so when she was away,
we had cameras, and I did it at my house.
I had a part time caregiver at my home and
there were cameras all over the house. And I didn't
apologize for it because that was just a checkpoint.
Speaker 1 (23:13):
From my grandfather. I know. It took us three caregivers
to find the one that was really going to be
set for us, but we had to go through that process.
The other thing, too, is that in consideration for both
of you when you are talking about this on the podcast,
I don't think it's even so much about a cost
of about how much it would cost to be just
be private or go to assists Living. I just don't
(23:34):
like it. I don't have a good feeling about assist Living.
I didn't do a tour as a favorite to someone
to go ahead and ask because they were saying, well,
we're looking to get their grandmother to go ahead or
their mother to be brought into this facility. So I
did the tour for them. It might have been a
nice facility every it might have been very gracious and kind,
and really it was like a nice place. I just
(23:54):
can't see it. I mean for my if it was
for my parents, I wouldn't want them an assist living.
I would not not a one one of these.
Speaker 4 (24:01):
Let me speak to that first and then I'll let
Sue speak to it. My mother is eighty six. My
father passed away the one he had Parkinson's for twenty
five years. We had kept him at home, private caregivers
and everything he moved when he passed last January. We
moved her into independent living in a care community. She
is having the time of her life. I am telling
(24:23):
you she has a better social life than I do,
times two. So I didn't feel much different than you actually,
but I am completely turned around. As a matter of fact,
when I'm eighty six, I have every intention, if I
have all my mental faculties, to be in a care
community like she's because she is having a fall. So
(24:46):
I think the social interaction is not to be under
not to be under estimated, depending on the person. And
Sue has experienced with a family member that socially it
was best to keep them at home only members were
socially it was the best to give them the stimulation
of a community, right.
Speaker 3 (25:05):
It really is an individual choice. It's something specific for everyone.
And what you want to get really clear on is
what are the ultimate goals of this relationship and what's
the right kind of community for your loved one. And
with my dad, my dad was a very private person
and the care community was not a great community for him.
(25:28):
He was uncomfortable being around a lot of the other people.
He was very private about a lot of things, and
it wasn't the kind of of a community. When he
got farther along in his diagnosis, it wasn't as big
of an issue because he was no longer connected with it.
So some of it is timing. A big part of
it is that I as for the care and I'll
(25:50):
talk about my husband in just a moment, But we
know our loved one well, we know what their triggers are,
we know the things they want to do, We understand
what about safety is, so we we pre look. I
went to a variety of care communities in selecting one
for my husband, who was very social and I could
not at home give him the amount of social stimulation
that was the right thing for him where he was
(26:11):
with his diagnosis. And so what I did is I
looked at care communities not for what was on the walls,
not for who was leading to care community things those
things that could change, but what were their models, What
were their models of care and what were the components
of how they supported their loved ones. And then I
looked for ones that had a day program that I
could take my husband to where he could do it,
(26:33):
trial run, where he could practice with it.
Speaker 2 (26:36):
And we went through a couple.
Speaker 3 (26:37):
Where the outcome was not what we would have anticipated,
and we got to the third one and after the
first day of the date, when I picked him up
after the first day, I said, well, how are you doing,
hon And he was as happy as he could be.
Now he didn't remember at all what he had done,
but he was happy and he felt good, and I
went back several times with him. They had a lot
of activities, they had music, they were engaged with people,
(26:59):
and it was the right kind of a place for him.
So it's a very very personal decision. The other reason
that I chose, and I think this is a very
important point to make sure everybody understands part of the
reason it was important for me to find a care
community for my husband. He was a larger gentleman than
I am when he went into what I called dementia moments,
(27:20):
and he didn't know where he was and he didn't
know who I was, and he was frightened. I wasn't
always sure nor was he, And there were examples of
this that I could stay safe.
Speaker 2 (27:31):
Or he could stay safe.
Speaker 3 (27:33):
So there are different reasons to consider a care community,
and your safety is absolutely one of the primary things.
My husband in his normal faculties would never have laid
a hand on me or done anything. But when he's
in a dementia moment, that's a whole different person. And
when we have dementia diagnoses, and I can't speak for
other diagnoses, but all the rest of it I could.
(27:54):
It is pretty much the same kind of thing you
would do, but with a dimension diagnosis where they don't
have control. That's something that it's very important. It's as
important for you as it is for them when you're
finding what the right choice is.
Speaker 4 (28:06):
And I'll add one more thing, and just to finish us,
Sue and I just did a podcast on this is
it time to change your loved ones living situation, home
and community that goes through a checklist of think about
it this way, think about it this way, think about that.
Here's the checklist for you to go through to decide
what's right for your loved one.
Speaker 2 (28:25):
So all of my.
Speaker 4 (28:29):
Care receivers stayed at home. Sue had one stay at
home and two went into care communities. So we have
the experience to say, look, here's what you think through.
But what's interesting is even for mine who stayed at home,
I had already picked out care communities. So if the
time came where I needed to make a move.
Speaker 2 (28:46):
I knew where we were.
Speaker 4 (28:47):
Going, and I had already gotten on the wait list,
and so I knew that I was prepared to transition
to make that leap at any moment if that's if
there needed to be a change. So you don't want
to get caught flat footed thinking you're always going to
keep the person at home and then all of a
sudden something changes, especially people living with dementia, things change,
(29:08):
and now all of a sudden you're desperate for finding
one versus being able to actually have gone through due
diligence and thought it all the way through it.
Speaker 1 (29:17):
So one more questions before we wrap things up. One
is I want to just unpack the fact that I
really love the answer you gave when it comes to
considering home and community living options, because I really, you know,
from the outside looking in, if I would have heard
that on your podcast and understand that that really helps
to make clarity for me. I love what you do
have right now. It's a I feel like this is
(29:38):
just a reference guy. There's so much you give here
and really and also even just the fact you do
twice a month, It's not like you're overwhelming people with
a lot of content, just a matter of great content.
You're getting on great people here. And one of the
areas you've been talking about as well in the last
couple of episodes is in the life and yes, that's
(30:00):
you know, I want to think of that. I mean,
none of my mother passed away three years ago and
coming up on three years and just knowing, but that's
but it was a hard issue. Was not anything in
terms of dementia or Alzheimer's, but I've had family members
that have gone through that. We had to deal with
it when it was eventual. That's what a tough subject
to go ahead and bring up front. And you brought
(30:22):
hospice nurses together, and you had that point where you know,
at the time ticks. I just want to go and
get in how you felt about when you did talk
to those hospice nurses, when you talked about planning the
funeral service, all those areas that people were just you know,
of course, we all have to be prepared for it.
We're going the caregig giving can only last for so long.
(30:46):
But then we have to get to this point of Okay,
it's time to say goodbye and we have to do
the preper the proper measures. Talking about those episodes you've
been doing about that, right, one of.
Speaker 3 (30:56):
The things that has made it easier for me throughout
all of my journeys, and it's continued to become easier
for me, especially with the last journeys with my dad
and with my husband, or that I got to the
place of acceptance. I accepted, this is this is the journey.
This is exactly what the journey is. I accepted it
(31:16):
one hundred percent, and I accepted it. I didn't have
to like it. I didn't have to agree with it,
I didn't have to understand it. I just had to accept, Okay,
this is what we have and accept it without judgment
of the disease of myself or anyone else. And when
I got to that place of acceptance, it was easier
for me to stay really fully present in the moment
of exactly what was going on, so I could make
(31:39):
the wisest choices, some of which were very challenging kinds
of choices to make. And what this is when we
are in those times we recognize that all of us
are going to come to the end of our lives.
When you know the things that we talk about doing
for our loved ones are things that we should be
looking at also for ourselves. So in the context of
(32:00):
with our loved one, it is if we can have
the conversations with them early in the diagnosis, while they're
still able to participate in the choices, that's really a
good thing to be able to do because then we
know more about what they're choosing. If that hasn't had
the opportunity to happen, we're their advocate, and so the
(32:21):
more effectively we can do it. And we actually had
kind of a trifecta. We talked with elder law attorneys
about the legal sides of things, We talked with hospice
about when and how to bring hospice in. And one
of the reasons we wanted to make sure that we
responsibly talked about hospice. So many people have a misunderstanding
about what hospice is. So our podcast episode on hospice
(32:43):
clarified what hospice is so that you could responsibly use
the services of hospice at the appropriate times with your
loved one, and it's not always in those last five days.
My husband's journey was over two years with hospice, and
then the other part of that where it's the funeral
planning and end of life and those the components of
(33:05):
that are so that you really get down to what
the gentleman Greg Cannon said is, Okay, what we don't
know is the date they're going to pass away. We
don't know that, but everything else can be done. And
when all of those things are done and we are
able with hospice care to be with our loved one
(33:27):
and we know that they're not suffering and we can
be transitioning, then all of those things have the opportunity
for us to have more peace of mind. And we've
talked to elder law attorneys so we know everything legally
is taken care of. Then we are able to concentrate
just with our loved one. And we wanted other people
to have the opportunity for that, because while both Nancy
(33:48):
and I did that, we know people who didn't and
the outcome was not very positive.
Speaker 1 (33:53):
Sue, I must admit the fact that you with your
husband and that taking that vow when you when to
marry him, fear to be with him through sickness and
health has to be a test on you. But that's
also just it really shows your your complete unconditional love
for him no matter how this comes across, and just
(34:14):
and I feel for you about how you had to
go through that, and and I don't know if that's
continuing on still, if he's still with us and all,
but it's a I don't even know how I can
say about that. That's amazing.
Speaker 2 (34:28):
Uh.
Speaker 3 (34:28):
One of the things I will say is we celebrated
what I say is his birthday back into heaven, and
I was able to be completely at peace with that
part of our journey.
Speaker 1 (34:38):
Yeah. No, no regrets, No regrets at all. Nope, Nope,
I'm emotional already. Wow. This is a lot, And you
know it's one of those if this is a necessary podcast,
I totally agree with that. And I love that you
were able to go ahead and put yourselves together to
(34:58):
do this in the first place, and to tackle this
issue because it is so important. And if we're not
dealing with someone that is all summer or dementia patient,
we know somebody that is. So the thing is that's
the power podcasting, because it would be so hard to
try to get this as a radio program or to
get out there the mainstream media to go and discuss
(35:20):
this because he don't I mean, the last time I
remember seeing a good documentary about this, I remember what
about fifteen years ago, I think was HBO had a
really strong documentary. I remember on one of our networks
that I worked for full time, we had with the
producer of The Alsborder. His name is John Hoffman, I
think it was. I forget the name. It's been a
long time, but I'm trying to think aout the fact
that when's the last time I really saw any stories
(35:41):
or anything that was really focused on this. But as
a podcast, this absolutely works, and I'm glad that you
both decided to go and put take this journey here
and start this. So you're already thirty plus episodes in,
and talk to me about the feedback of the audience. You know,
what's the demographic you've had so far and what kind
of a commentary. I'm sure you must have had some
(36:02):
amazing commentary so far about what he's talked about so far.
Speaker 4 (36:06):
You know, our demographics is actually an interesting play. We've
got over twelve thousand subscribers and already and we were
about eight months in, and the demographic is about forty
percent US, sixty percent outside the US, huge following in
South Africa, the Philippines, UK, Canada. Obviously a large following
(36:27):
in the US as well because the numbers are there,
but there's a there's a big hole for practical tips.
There's a lot of high level information out there, but
people are starving for what do I do in this situation? So,
like I said before, we try to keep our episodes
to twenty five minutes because we want to make sure
it's here's here's the situation, bathing and dressing, Here's what
(36:47):
you can expect first, Here's how to handle this.
Speaker 2 (36:49):
Tip two is this, Tip three is this, Tip.
Speaker 4 (36:51):
Four is that they're very you know, direct, and we
tell stories about why this is a good way to
do it or why we did it the wrong way
and this is how we learned not to do it again.
So demographically, it's been a big Uh. That was a
big eye opener for Sue and I. We both wanted
this to be a global podcast. We just didn't realize
from day one how much of an impact it was
(37:12):
going to make globally right off the bat.
Speaker 2 (37:14):
That was Uh. That was a big surprise.
Speaker 4 (37:17):
And then the comments, the comments are endearing, they are
exact the comments. If we write down what our objective
is with this podcast, which is to give dementia family
caregivers confidence, patience, and peace of mind.
Speaker 2 (37:30):
The comments are you made me feel like I can
do it.
Speaker 4 (37:35):
I now understand about incontinence and I'm thinking about it
from their perspective now instead of for mine, and so
I'm a much nicer caregiver because of it. You know,
you give me the confidence that this is something that
I can handle. And time and time again, that's the
comment that we get. And that's and I'll pass them
to Sue or so will pass them to me when
we see them, and I'm like, this is exactly why
(37:56):
we're doing this.
Speaker 2 (37:57):
So they hit the nail on the head almost every
comment does.
Speaker 1 (38:02):
Yeah.
Speaker 2 (38:02):
Also what brings us back?
Speaker 3 (38:03):
Yeah, it's what's we're so passionate, both of us. We
created our what we're doing as a nonprofit because our
passion is to be serving those who are the family
caregivers and we are so passionate about it. And when
we get these messages, what they're identifying for us is
that we are on the right track. That the things
we struggled with, which was trying to find answers and
(38:25):
trying to find the details and that's why we're so
specific on focusing on those and that's what people are saying,
Thank you.
Speaker 2 (38:32):
You're bringing us what we didn't have.
Speaker 3 (38:33):
You're giving us the answers we didn't know, and that's
why we structured ourselves the way we did, and that's
why we picked the topics that we do. That's why
we bring in other experts, and then we also take
a long time working with each one of them before
we do the podcast episode so that we put them
in the best position to give the most amount of detailed,
quality information for our audience and that we're asking the
(38:58):
questions our audience needs the answers to.
Speaker 1 (39:03):
Thank you for the service. Thank you for putting this.
I don't know if you. And the thing is interesting
about the audience and demographic, about how many areas you
would have that you know that culturally they're very much
extended families, a lot of loved ones that just everybody
says together, cousins, uncles, aunts, everybody's just so close knit
and they find a way to going to take care
of their loved ones. And I also love the fact
(39:25):
you're able to go ahead and expand on the fact
that you can find favorable experiences, whether it's taking care
of a loved one at home or at an assistant
living facility, however that works, and that's warnful and also
just doing whatever it is to best accommodate and make
the last couple of years of that person's life as
best as possible. And that's real love. And I love
(39:49):
that you're doing that, and I love that you're doing
this podcast. So really, I think a lot of people
were going to say the same thing, thank you for
doing this, because I don't know who else can do it.
This is not like the first out on Imagine. It's
the first topic that we want to go to talk about.
This is set.
Speaker 4 (40:04):
Well, thank you for helping us get the word out,
because that's really it's no good if everybody if people
don't know about it.
Speaker 1 (40:09):
So great, So I want to go and take people
over to thecaregivers Journey dot com, thecaregivers Journey dot com
and real well, take a minute or two. There's a
lot of things besides the podcast. You have online course,
you have books. Three guys us your social media platforms.
Take us through what the Caregivers Journey does besides the podcast.
Speaker 4 (40:31):
So we do Facebook, We have a Facebook page and
group that we that we interact with that comes all
from all over the world as well, Instagram, LinkedIn support,
and then on the on the website itself, we have
podcasts usually around twenty five minutes.
Speaker 2 (40:47):
Every podcast has a matching blog.
Speaker 4 (40:50):
That's usually a couple of pages, so if you want
to read about the topic can quickly get the information,
you can do it.
Speaker 2 (40:55):
Through the blog.
Speaker 4 (40:57):
It's also it's just an it's really an alignment with
the podcasts very directly. We have Sue wrote a caregiving
book that before we even hooked up as for this podcast,
several years ago.
Speaker 2 (41:10):
It's fantastic. You can find that book on the podcast.
Speaker 4 (41:13):
On the website as well, we have as you as
you know, worksheets, guides, ebooks, there's.
Speaker 2 (41:22):
An e learning course.
Speaker 4 (41:23):
So we're trying and then we're getting ready to add
hopefully and just in the next couple of weeks a
resource page because we are investigating other resources that are
not developed by us. I went to a recent caregiving
dementia caregiver course that I took online for eight hours
to see if this is a good resource for our listeners.
So that kind of thing will also be online on
(41:46):
our resources page. So that we can connect people with
good resources that we can confidently say we've used, or
listened or or participated in. We're not just randomly putting
resources out there. These are ones we can confidently recommend
to our listeners.
Speaker 1 (42:03):
Also, I would recommend when you go to the website
there's a big blue donate button right there, non for profit,
make sure to go and help out these folks. And really, really,
Nancy and Sue, I appreciate you going to bring in
this forward to us and I'm glad I got a
chance to go and talk about this in the program.
You know, this is tough for me to talk about because,
like I said, I'm just thinking about things when it
comes to my family and knowing what I've seen firsthand,
(42:25):
and I think you've really cleared my kind of opened
my eyes to a lot of different things and I
need that. So I hope other people will latch on
subscribe to your podcast. It's all all major podcast platforms,
but all IM and as from Thecaregivers Journey dot com
and again, Nancy Treester Sue right, thank you so much
for being all with us.
Speaker 2 (42:43):
Really, thank you very much for having us.
Speaker 1 (42:45):
Absolutely, and folks, that's another podcast for show. Really appreciate
you taking time to go and join us and come back.
We'll have another episode for you next time.
Speaker 4 (43:02):
Back
Welcome to podcast is row. This is King of Podcasts
here with you. Appreciate all of you joining us here
at the program wherever you find the program, whether example podcasts, Spotify,
Amazon Music, YouTube, YouTube music, iHeartRadio, all the places, and
of course it all emanates from Kingopodcasts dot com. And
thank you again for joining us. Great guests that we
have here on the program today. I'm glad we're finally
(00:28):
getting ourselves back into the mix of getting this show
back up, because you know, it's been a little while
since I got a chance to go and get this
to momentum back up, to get more guests to go
on board. Because really it's all about those of you
that are podcast listening to the program, or those that
you know of that have a podcast, tell them to
go ahead and follow me over here. Go to Kingofpodcasts
(00:49):
dot com and just go ahead. And by the way,
to contact me, you can contact me directly through King
of Podcasts at yahoo dot com. Go right there, send
a request and we'd love to god have go on.
Because really this is just a matter of little cross promotion,
a little bit of time to talk to other podcasters,
learn about their craft and learn what they're talking about,
and for today's program, I want to welcome a team
(01:12):
of podcasters. They have combined of decades of caregiving experience
and also one of our guests having a excessive background
in the software industry. They are navigating multiple caregiving roles
while maintaining careers to provide support and resources to caregivers,
and the aim of The Caregiver's Journey podcast is to
(01:34):
help caregivers move from feeling frightened to confident through candid
conversations and actionable steps. And they've created the podcast The
Caregiver's Journey, the Phillip specific gap and existing caregivers support
with their podcasts and their offerings. So I want to
welcome to co founders and the co hosts of The
Caregiver's Journey, Nancy Treestro and Sue Ryan. Thank you both
for being on with it. Really appreciate it.
Speaker 2 (01:56):
Thank you so much. We appreciate it as well. We're
glad to be here.
Speaker 1 (02:00):
I've had much time to go and talk off air
about myself or just to get a chance to get acquainted.
But I'll tell you just for context, I live in
South Florida. More enough know that I have family that's
in the healthcare community that we are more familiar with
the process of it, you know, for people that are
looking for certified nurses, AIDS, home health AIDS and the caregivers.
(02:22):
And also knowing that I've had family members We've had
to go and take care because in my household, you know,
taking care of my father right now, he's eighty years old.
We had my grandfather, all my grandparents came through here.
I'm a family, human household, right So it's like we're
not sending nobody's in assistant living anything like that. So
the understanding of what the health care market is here,
(02:44):
and knowing if you're trying to bring somebody as a
personal caregiver to keep someone out of an assistant living
facility to still be able to go and live at
home and still function a home to some capacity with
help real quickly, I'll just leave to both of you
about what it really comes down to. That said, with
(03:05):
your decades of experience of caregiving, what you do in
terms of specifically what kind of patients are the ones
that are most needed for this kind of this kind
of healthcare, this personal caregiving, and what you focus on
the most.
Speaker 2 (03:24):
So you want to start.
Speaker 3 (03:29):
When we look at caregivers and we look at the
care receivers. The combination of that is our loved ones.
When we're looking at the diagnosis that they have. Our
primary focus because of our experience, is with care receivers
who have different diagnoses of dementia. And when we look
(03:50):
at those who are going to be giving care for them,
it is us who are as you had identified, who
are family members. And then we also compliment that sometimes
with professional help or with other kinds of help that
come in through our family to be able to provide
the care. What we're really focusing on making sure is that,
(04:13):
of course, our loved one has the best level of
care for the where they are in their diagnosis. And
what we want to make sure of, especially if we're
supporting them as a family unit, is how we prepare
each of our family members to be the best care giver.
And part of that gets to asking them what they're
(04:33):
comfortable and not comfortable with in the area of care,
and Nancy, I'm going to ask you to speak toward
that from an experience you had. And then the other
part of it is making sure that their home and
we have podcast episodes about this, but where they're living
the home they're living in is actually safe and is
actually re architected to support what they have access to
(04:57):
and what will keep them safe twenty four to seven.
So it's a blend of what those components are. And
we've talked about home safety in some of our podcast episodes,
and we've talked about wandering and things like that, and Nancy,
we've actually talked about this in a podcast episode. But
I think your specific example of the level of care
of the different family members based on what they're comfortable with,
(05:18):
would be a good response to his question.
Speaker 4 (05:23):
So first, I think, as Sude said, we do focus
on dementia family caregivers, and I would argue that that's
one of, if not the hardest kind of caregiving for
family members to have to deal with, and we keep
our family members as home as long as we possibly can.
(05:44):
It's a very demanding job for people living with dementia.
Sue and I focus our podcast episodes really on the
family caregiver, with the idea that across the world, there
are a lot of people who are first timers. They're
not trained in dementia care, their first time home caregivers,
(06:08):
and there are some very specific things, although they're common
day to day things on how to take care of
someone with dementia, that we want to make sure they
have resources to educate themselves with. So that's what our
podcast is focused on, and that's the kind that we do.
As we do twenty five minute episodes, they're very tip oriented.
(06:29):
We cover topics like bathing and dressing, incontinence, wandering, home safety,
all the little personal care grooming. How do you manage
someone who's living with dementia through the phases of their journey.
And I was fortunate enough to be able to keep
(06:50):
both my husband and my father in law in law
at home through.
Speaker 2 (06:54):
The very end.
Speaker 4 (06:55):
But these are all lessons learned either by Sue or
I or through caregiver support groups that we've been in
where we've learned lessons how to take away the keys,
you know, everything from the early stages and how to
communicate to the late stages, and how to change someone's depend.
Speaker 2 (07:15):
If they're bed ridden. So that's our that's our objective.
Speaker 4 (07:19):
And and it's really difficult to manage day to day
home care for someone who's living with dementia through the
entire journey because it's a marathon, not a Sprint and Nancy.
Speaker 3 (07:31):
Nancy, one of the one of the things that you
experienced that we talk about in our podcast that goes
toward his question is what you and Merritt had the
conversation about with when you're when you are keeping your
loved one at home and you've got family members and
what levels of care each of them can provide.
Speaker 1 (07:50):
So go ahead, George, Well, I wanted to make the
point that that distinction between a patient who has bedridden
and one that can still more or less sure, it
is just again with dimension Alzheimer's. My grandfather, for I
want to say, it was five years we had him
at home with us. My parents were still both working,
(08:10):
we were in college, and it was still with six
people in the house. And then we had, you know,
for a while, it was going to be somebody that
came in that was would check in for a time
of time, but then we had somebody that was living
with us. And I just know that, you know, for
the bulk the whole time, he really, you know, my
grandfather just could not move out. He really was bedridden.
(08:34):
We had a hospital bed brought into the bedroom here
where he's at, and you know, she at least the
other thing was, like I say, it's hard to find
a caregiver that feels like she wants to envelop herself
into the family. Where she was cooking, she was cleaning,
taking care of a lot of the household chores for
us while taking care of my grandfather. But that's something
(08:56):
that's so difficult for anyone to go and find. Now
and then at the same time, I'm going to do
as much detail because all the time about my family,
but for other family members of people I've worked with,
where there was somebody that I'll say that she was
going through But prior to this, I mean she was
what her late seventies completely, I mean in great shape.
(09:20):
First of all, it was very athletic, very health conscious,
a lot behind that and you know, moves around. You
wouldn't have ever thought that she was dealing with anything
with dementia of Alzheimer's. But yeah, the problem was is
that the caregiver for that, you know, while she can
move around the house, the patient, the caregiver was just
(09:43):
not good and not prepared to good handle when things
got awry. And also because the family members that left
that caregiver to that patient were not around like they
were just hoping that the caregiver could just basically take
care of the bulk. They didn't want to have the
assistic facility, but they wanted to do something to still
(10:03):
keep them here and still feel like there's a way
to turn around the effects of dimension, that maybe there's
some way to find certain treatments to you know, enhance
cognitive functions, something to bring them back to where they were.
Because that's the part that what I want to get
is just a little bit of take of that difference
between when someone is bedridden and the level of care
(10:24):
that you had to work on for the most part,
what is the most common form of care that caregivers
have to be prepared for that you hear about and
you talk about the.
Speaker 4 (10:34):
Most So it's says talking about we see a lot
of family caregivers managing for the first few years of dementia,
where family members are able to even maintain their jobs
and just support the person living with dementia and support
their independence as best they can. Lots of people put
cameras or things in their house so they can keep
(10:56):
an eye on things with, you know, and often they'll
tell the person living with dementia that this is a
way that we can help you maintain your independence, so
you know you can stay here by yourself a little
bit longer, even if the person's going off to work.
So for the first few years you can usually live.
You can just support the person. But somewhere in the
(11:16):
middle Sue and I coined. Sue coined it, I just
have absolutely adopted it called the messy middle. It's when
you stop supporting the person living with dementia and you
have to assert control over what they're doing. And unfortunately,
that's when the person living with dementia thinks they still
know how to make decisions, and you know that they don't,
(11:37):
and so you have to take over really so much
of their day to day living because they can't do
it themselves and they're not focused. They're very frustrated because
they still want to do it themselves even though you
know they can't, and you're frustrated because lots of times
you want them to still be able to do it themselves.
But at that point, someone has something has to give.
(11:58):
They can't be by themselves anymore, and either a family
member has to stop working and be at home all
the time, or you have to hire somebody to come
in and support the person living with dementia.
Speaker 2 (12:11):
They can't be by themselves.
Speaker 4 (12:13):
And these days there's more and more people who are
trained caregivers, specifically trained in dementia support. So I would
suggest if you can find someone that's got at least
some level of training for dementia support, that would be
a positive. But in the messy middle, it can get really,
really tricky because people living with dementia get frustrated, they
(12:36):
get angry, they get aggressive because they're scared because they
don't know what's happening. They don't understand why, they don't
know to what's going on. They often find that they're
in a they're confused, they don't know where they are,
they don't know who you are, they're petrified, and so
they get aggressive and angry, and that it's very.
Speaker 2 (12:58):
Difficult to to get through that process, either as a
caregiver or a family member.
Speaker 4 (13:04):
It takes a lot of extra beyond you can even
imagine patients and really education because I think you build
confidence when you know what to expect, which is part
of why we have our podcast is to help people
build confidence so they know what to expect so that
it's not so scary as the caregiver to know how
to handle these different situations.
Speaker 1 (13:27):
So now both of you collectively, you live in Georgia
and Florida, so warm weather climates. I don't know those
for a lot of us that maybe it's just me
that looks and precedes it this way, but a lot
of the best healthcare we've always heard from Florida or
Arizona from warm weather climates. And if you have a
patient that is for dementia of Alzheimer's and you're not
(13:50):
in an area where as a warm weather climate. For
whatever reason, it's always been the thought where I guess
unlikes the best disinfected, and then the same thing goes
for recovery. All there's various treaments that always feel the
best healthcare comes from an area where you have these
kind of climates. Do you ever notice there's a difference
where if you're looking for a good caregiver it is
best to try to look if you can. I don't
(14:12):
know if you can relocate or if you can do
something where you find some way to create that kind
of climate for I mean, I don't know if that
makes it a sense or not, but.
Speaker 3 (14:23):
I think, yeah, I think to your point, one of
the things that helps in the stability of especially with
the diagnosis of dementia, when we have a loved one
who is beginning their journey is the familiarity. One of
the last things you want to do is to get
them out of their routine. The more that you keep
them in a routine can keep them with what they're
familiar with, their surroundings, the people who are there around
(14:47):
things like that, the easier it's going to be. What
you have when you're bringing in caregivers is that we
have a significant decrease in the number of people who
are actually family member. It used to be there was
a ratio of about seven to one family caregivers to
each individual. Now that we have more and more baby
(15:08):
boomers becoming the care receivers, that pool of available family
caregivers is down to about four to one, and it's
going even farther down to about three to one in
the next few years. We also have from an employment perspective,
it's just where you're going to get the professional family caregivers.
We have fewer people here in the United States who
are going into that as a profession, so we have
(15:31):
more and more people who are emigrating from other countries.
They're less concerned about where they go to live because
this isn't their native country. They're more concerned with where
they have an opportunity for employment. So as we look
to our pool of available family caregivers, often coming from
people who have entered the country in order to beat
(15:52):
family caregivers, it's not as much a location thing. So
I think you're okay no matter where you live. You
want to get your loved one in a routine and
then find people. One of the things that's great is
there are in many, many communities there are organizations. One
of the ones we work with as an organization called
(16:12):
Senior Care Authority, and they have connections with communities and
with people who serve as caregivers in the hall or
in communities and all different kinds of options. So in
your local community you have access to people who can
connect you with that you don't pay them a fee.
The company that caregivers work for or the care community
(16:35):
is who pays them a fee. So they are really
a great resource no matter where you are in the
country to try to support you. Because part of the
thing is, like I know, I never looked for a
caregiver before I hadn't gone to school for being a caregiver,
so I didn't have a class one on one on
how to find caregivers so we can get support. The
other place to get support for that wherever you live
(16:56):
is through support groups that are local to your area,
and people will give you names and references. So again,
I think in the summary of it, it's that you
do want to keep your care receiver in their environment
as much as possible and find resources that surround them
in your area.
Speaker 1 (17:13):
And I said, saying, I'm a complete novice on this.
I'm happy to say this. I know my thing about podcasting,
but when it comes to this here, it's really on
the outside looking in and just saying from being where
I live and noticing how many snowbirds we have here
on a regular basis that will flock down this way
this time of year as we speak, and I mean,
I've gotten a chance to go and look into what
(17:35):
various caregivers I've seen that have been on the extreme
great side of really people pleasing caregiving compassion to the
other side of just complete neglect. I've seen both sides
of that. And you know, one of the things I
do part time is I'm an uber driver and I
can't how many times where I go to a doctor's
appointment for a patient just the other day, you know,
(17:56):
I was a lady that was no walker coming out.
I don't think there was anything in terms of any dementia.
L Summer's just a matter just more of meaning to
someone to go and help out because you're much older
and we can't try it, can't go around. But it's
one of those things where just I could tell like
the treatment of the caregiver was like, I mean, you know,
the probably won't get paid enough. There are so many
(18:17):
people that come into go into nursing on a regular basis,
but they don't opt to go into caregiving. They would
rather go into becoming an RN or a nurse practitioner
and not opt for home health care or certified nurses Aid.
Is there anything that you see there where there are
obviously a lot of great professionals that would be qualified
(18:38):
and easily could go ahead and integrate into doing caregiving,
but it is a cost issue. There's not enough being
often in terms of incentive to do that. Is that
something that has changed in the last couple of decades
as you've been you know, looking at it yourselves, and
is that something that could help out in the process
of trying to bring better care to patients at home.
Speaker 4 (19:00):
You know, George, the first thing you want to do
is look at the level of care you need, because
that does affect the cost. So are you just looking
for a companion sometimes early in the diagnosis. Really you
just need a companion, someone to support them, like we
talked about, and you can leverage technology to help as well.
But sometimes you'll bring a companion and you don't want
(19:20):
them to get isolated, and that actually accelerates dementia. So
you want to make sure they stay as mentally active
socially as you can. Send them to adult let the
companion take them to adult day programs like adult day care,
or at least support them with some activities like go
(19:40):
out to lunch or you know, basically be around.
Speaker 2 (19:43):
To your point, they can cook and clean and.
Speaker 4 (19:45):
Do a lot of other stuff, but they're there as
much for companionships. That is the least expensive kind of
caregiving to get. The second one is what you mentioned,
which is a CNA certified nursing assistant, and that is
what you'll probably get as you move into the mid
stay dementia. A certified nursing assistant is someone who is
trained in changing.
Speaker 2 (20:07):
You know, incontinence.
Speaker 4 (20:08):
Underwear and you know, and from there all the way through,
and that kind of person is going to cost more.
And then the third one is when you need skilled nursing,
and that's towards the end, and in skilled nursing, that's
a third level of expense. So first you need to
identify what level of care you're looking for depending on
where your care receiver is in their diagnosis and in
(20:29):
their journey, and that'll help with expenses.
Speaker 2 (20:31):
Then you have two choices.
Speaker 4 (20:33):
You can go through a care service and that will
cost more, no question.
Speaker 2 (20:39):
But they'll do background checks, they'll do.
Speaker 4 (20:43):
They'll they'll do all sorts of financial checks, they'll pay
the taxes. You know, it's an easier way to bring
someone in, and they'll make sure if the person can't
come to work that day, that someone comes in to
replace them. So there's something to be said for that. However,
a lot of people also, especially in smaller communities. My
(21:03):
parents were an hour and a half south of Atlanta,
and so in a smaller community and everyone knows everyone
who cares for My dad had Parkinson's and everyone knows
everyone who cares for the Parkinson's people, right, so as
someone would pass away or go move into nursing home,
someone that person would free up and someone would pick
(21:25):
them up for a few hours to begin to support
their family. And so they did it all through private,
almost completely down there, and we did a little bit
of a care service for a nighttime duty, but all
through private. It costs less when you do private, but
you are responsible. If someone can't make it to work,
you either need to stay home or you have to
(21:47):
find someone else to back them up. So it's a
little more complicated and you have to deal with background
checks and being confident this person is capable of supporting
your family member. And then the same with skill nursing.
By the time you get to skill nursing, that's whole
other level of care. Usually you definitely want to go
through a care service for that kind of a person.
Those are usually not word of mouth roles. When you
(22:08):
get to skill nursing, and if you are going to
do it privately, you need well for either one. Unless
you're rushing. You want to interview the person in an
extensive level as best you can, and when you get
narrow it down to like two people, if particularly we're
talking about.
Speaker 2 (22:22):
People with dementia.
Speaker 4 (22:23):
If you can get it down to a couple of people,
then I would have the care receiver be involved in
the last couple of interviews if it's a reasonable thing
to do, and you can just see how they interact
with the person, and then whatever you do, I would
do it on a trial basis, because to your point,
they may not be a very good caregiver. All of
(22:45):
that is good due diligence, but they may not be
good at it, and they may not be as loving
as and sweet and nice as you want them to be.
And you know what, I would just make it clear
that it's on a trial basis, and I would do
I wouldn't be scared to put cameras in my house.
Speaker 1 (22:58):
I did it.
Speaker 4 (22:59):
We did it my mother, and so when she was away,
we had cameras, and I did it at my house.
I had a part time caregiver at my home and
there were cameras all over the house. And I didn't
apologize for it because that was just a checkpoint.
Speaker 1 (23:13):
From my grandfather. I know. It took us three caregivers
to find the one that was really going to be
set for us, but we had to go through that process.
The other thing, too, is that in consideration for both
of you when you are talking about this on the podcast,
I don't think it's even so much about a cost
of about how much it would cost to be just
be private or go to assists Living. I just don't
(23:34):
like it. I don't have a good feeling about assist Living.
I didn't do a tour as a favorite to someone
to go ahead and ask because they were saying, well,
we're looking to get their grandmother to go ahead or
their mother to be brought into this facility. So I
did the tour for them. It might have been a
nice facility every it might have been very gracious and kind,
and really it was like a nice place. I just
(23:54):
can't see it. I mean for my if it was
for my parents, I wouldn't want them an assist living.
I would not not a one one of these.
Speaker 4 (24:01):
Let me speak to that first and then I'll let
Sue speak to it. My mother is eighty six. My
father passed away the one he had Parkinson's for twenty
five years. We had kept him at home, private caregivers
and everything he moved when he passed last January. We
moved her into independent living in a care community. She
is having the time of her life. I am telling
(24:23):
you she has a better social life than I do,
times two. So I didn't feel much different than you actually,
but I am completely turned around. As a matter of fact,
when I'm eighty six, I have every intention, if I
have all my mental faculties, to be in a care
community like she's because she is having a fall. So
(24:46):
I think the social interaction is not to be under
not to be under estimated, depending on the person. And
Sue has experienced with a family member that socially it
was best to keep them at home only members were
socially it was the best to give them the stimulation
of a community, right.
Speaker 3 (25:05):
It really is an individual choice. It's something specific for everyone.
And what you want to get really clear on is
what are the ultimate goals of this relationship and what's
the right kind of community for your loved one. And
with my dad, my dad was a very private person
and the care community was not a great community for him.
(25:28):
He was uncomfortable being around a lot of the other people.
He was very private about a lot of things, and
it wasn't the kind of of a community. When he
got farther along in his diagnosis, it wasn't as big
of an issue because he was no longer connected with it.
So some of it is timing. A big part of
it is that I as for the care and I'll
(25:50):
talk about my husband in just a moment, But we
know our loved one well, we know what their triggers are,
we know the things they want to do, We understand
what about safety is, so we we pre look. I
went to a variety of care communities in selecting one
for my husband, who was very social and I could
not at home give him the amount of social stimulation
that was the right thing for him where he was
(26:11):
with his diagnosis. And so what I did is I
looked at care communities not for what was on the walls,
not for who was leading to care community things those
things that could change, but what were their models, What
were their models of care and what were the components
of how they supported their loved ones. And then I
looked for ones that had a day program that I
could take my husband to where he could do it,
(26:33):
trial run, where he could practice with it.
Speaker 2 (26:36):
And we went through a couple.
Speaker 3 (26:37):
Where the outcome was not what we would have anticipated,
and we got to the third one and after the
first day of the date, when I picked him up
after the first day, I said, well, how are you doing,
hon And he was as happy as he could be.
Now he didn't remember at all what he had done,
but he was happy and he felt good, and I
went back several times with him. They had a lot
of activities, they had music, they were engaged with people,
(26:59):
and it was the right kind of a place for him.
So it's a very very personal decision. The other reason
that I chose, and I think this is a very
important point to make sure everybody understands part of the
reason it was important for me to find a care
community for my husband. He was a larger gentleman than
I am when he went into what I called dementia moments,
(27:20):
and he didn't know where he was and he didn't
know who I was, and he was frightened. I wasn't
always sure nor was he, And there were examples of
this that I could stay safe.
Speaker 2 (27:31):
Or he could stay safe.
Speaker 3 (27:33):
So there are different reasons to consider a care community,
and your safety is absolutely one of the primary things.
My husband in his normal faculties would never have laid
a hand on me or done anything. But when he's
in a dementia moment, that's a whole different person. And
when we have dementia diagnoses, and I can't speak for
other diagnoses, but all the rest of it I could.
(27:54):
It is pretty much the same kind of thing you
would do, but with a dimension diagnosis where they don't
have control. That's something that it's very important. It's as
important for you as it is for them when you're
finding what the right choice is.
Speaker 4 (28:06):
And I'll add one more thing, and just to finish us,
Sue and I just did a podcast on this is
it time to change your loved ones living situation, home
and community that goes through a checklist of think about
it this way, think about it this way, think about that.
Here's the checklist for you to go through to decide
what's right for your loved one.
Speaker 2 (28:25):
So all of my.
Speaker 4 (28:29):
Care receivers stayed at home. Sue had one stay at
home and two went into care communities. So we have
the experience to say, look, here's what you think through.
But what's interesting is even for mine who stayed at home,
I had already picked out care communities. So if the
time came where I needed to make a move.
Speaker 2 (28:46):
I knew where we were.
Speaker 4 (28:47):
Going, and I had already gotten on the wait list,
and so I knew that I was prepared to transition
to make that leap at any moment if that's if
there needed to be a change. So you don't want
to get caught flat footed thinking you're always going to
keep the person at home and then all of a
sudden something changes, especially people living with dementia, things change,
(29:08):
and now all of a sudden you're desperate for finding
one versus being able to actually have gone through due
diligence and thought it all the way through it.
Speaker 1 (29:17):
So one more questions before we wrap things up. One
is I want to just unpack the fact that I
really love the answer you gave when it comes to
considering home and community living options, because I really, you know,
from the outside looking in, if I would have heard
that on your podcast and understand that that really helps
to make clarity for me. I love what you do
have right now. It's a I feel like this is
(29:38):
just a reference guy. There's so much you give here
and really and also even just the fact you do
twice a month, It's not like you're overwhelming people with
a lot of content, just a matter of great content.
You're getting on great people here. And one of the
areas you've been talking about as well in the last
couple of episodes is in the life and yes, that's
(30:00):
you know, I want to think of that. I mean,
none of my mother passed away three years ago and
coming up on three years and just knowing, but that's
but it was a hard issue. Was not anything in
terms of dementia or Alzheimer's, but I've had family members
that have gone through that. We had to deal with
it when it was eventual. That's what a tough subject
to go ahead and bring up front. And you brought
(30:22):
hospice nurses together, and you had that point where you know,
at the time ticks. I just want to go and
get in how you felt about when you did talk
to those hospice nurses, when you talked about planning the
funeral service, all those areas that people were just you know,
of course, we all have to be prepared for it.
We're going the caregig giving can only last for so long.
(30:46):
But then we have to get to this point of Okay,
it's time to say goodbye and we have to do
the preper the proper measures. Talking about those episodes you've
been doing about that, right, one of.
Speaker 3 (30:56):
The things that has made it easier for me throughout
all of my journeys, and it's continued to become easier
for me, especially with the last journeys with my dad
and with my husband, or that I got to the
place of acceptance. I accepted, this is this is the journey.
This is exactly what the journey is. I accepted it
(31:16):
one hundred percent, and I accepted it. I didn't have
to like it. I didn't have to agree with it,
I didn't have to understand it. I just had to accept, Okay,
this is what we have and accept it without judgment
of the disease of myself or anyone else. And when
I got to that place of acceptance, it was easier
for me to stay really fully present in the moment
of exactly what was going on, so I could make
(31:39):
the wisest choices, some of which were very challenging kinds
of choices to make. And what this is when we
are in those times we recognize that all of us
are going to come to the end of our lives.
When you know the things that we talk about doing
for our loved ones are things that we should be
looking at also for ourselves. So in the context of
(32:00):
with our loved one, it is if we can have
the conversations with them early in the diagnosis, while they're
still able to participate in the choices, that's really a
good thing to be able to do because then we
know more about what they're choosing. If that hasn't had
the opportunity to happen, we're their advocate, and so the
(32:21):
more effectively we can do it. And we actually had
kind of a trifecta. We talked with elder law attorneys
about the legal sides of things, We talked with hospice
about when and how to bring hospice in. And one
of the reasons we wanted to make sure that we
responsibly talked about hospice. So many people have a misunderstanding
about what hospice is. So our podcast episode on hospice
(32:43):
clarified what hospice is so that you could responsibly use
the services of hospice at the appropriate times with your
loved one, and it's not always in those last five days.
My husband's journey was over two years with hospice, and
then the other part of that where it's the funeral
planning and end of life and those the components of
(33:05):
that are so that you really get down to what
the gentleman Greg Cannon said is, Okay, what we don't
know is the date they're going to pass away. We
don't know that, but everything else can be done. And
when all of those things are done and we are
able with hospice care to be with our loved one
(33:27):
and we know that they're not suffering and we can
be transitioning, then all of those things have the opportunity
for us to have more peace of mind. And we've
talked to elder law attorneys so we know everything legally
is taken care of. Then we are able to concentrate
just with our loved one. And we wanted other people
to have the opportunity for that, because while both Nancy
(33:48):
and I did that, we know people who didn't and
the outcome was not very positive.
Speaker 1 (33:53):
Sue, I must admit the fact that you with your
husband and that taking that vow when you when to
marry him, fear to be with him through sickness and
health has to be a test on you. But that's
also just it really shows your your complete unconditional love
for him no matter how this comes across, and just
(34:14):
and I feel for you about how you had to
go through that, and and I don't know if that's
continuing on still, if he's still with us and all,
but it's a I don't even know how I can
say about that. That's amazing.
Speaker 2 (34:28):
Uh.
Speaker 3 (34:28):
One of the things I will say is we celebrated
what I say is his birthday back into heaven, and
I was able to be completely at peace with that
part of our journey.
Speaker 1 (34:38):
Yeah. No, no regrets, No regrets at all. Nope, Nope,
I'm emotional already. Wow. This is a lot, And you
know it's one of those if this is a necessary podcast,
I totally agree with that. And I love that you
were able to go ahead and put yourselves together to
(34:58):
do this in the first place, and to tackle this
issue because it is so important. And if we're not
dealing with someone that is all summer or dementia patient,
we know somebody that is. So the thing is that's
the power podcasting, because it would be so hard to
try to get this as a radio program or to
get out there the mainstream media to go and discuss
(35:20):
this because he don't I mean, the last time I
remember seeing a good documentary about this, I remember what
about fifteen years ago, I think was HBO had a
really strong documentary. I remember on one of our networks
that I worked for full time, we had with the
producer of The Alsborder. His name is John Hoffman, I
think it was. I forget the name. It's been a
long time, but I'm trying to think aout the fact
that when's the last time I really saw any stories
(35:41):
or anything that was really focused on this. But as
a podcast, this absolutely works, and I'm glad that you
both decided to go and put take this journey here
and start this. So you're already thirty plus episodes in,
and talk to me about the feedback of the audience. You know,
what's the demographic you've had so far and what kind
of a commentary. I'm sure you must have had some
(36:02):
amazing commentary so far about what he's talked about so far.
Speaker 4 (36:06):
You know, our demographics is actually an interesting play. We've
got over twelve thousand subscribers and already and we were
about eight months in, and the demographic is about forty
percent US, sixty percent outside the US, huge following in
South Africa, the Philippines, UK, Canada. Obviously a large following
(36:27):
in the US as well because the numbers are there,
but there's a there's a big hole for practical tips.
There's a lot of high level information out there, but
people are starving for what do I do in this situation? So,
like I said before, we try to keep our episodes
to twenty five minutes because we want to make sure
it's here's here's the situation, bathing and dressing, Here's what
(36:47):
you can expect first, Here's how to handle this.
Speaker 2 (36:49):
Tip two is this, Tip three is this, Tip.
Speaker 4 (36:51):
Four is that they're very you know, direct, and we
tell stories about why this is a good way to
do it or why we did it the wrong way
and this is how we learned not to do it again.
So demographically, it's been a big Uh. That was a
big eye opener for Sue and I. We both wanted
this to be a global podcast. We just didn't realize
from day one how much of an impact it was
(37:12):
going to make globally right off the bat.
Speaker 2 (37:14):
That was Uh. That was a big surprise.
Speaker 4 (37:17):
And then the comments, the comments are endearing, they are
exact the comments. If we write down what our objective
is with this podcast, which is to give dementia family
caregivers confidence, patience, and peace of mind.
Speaker 2 (37:30):
The comments are you made me feel like I can
do it.
Speaker 4 (37:35):
I now understand about incontinence and I'm thinking about it
from their perspective now instead of for mine, and so
I'm a much nicer caregiver because of it. You know,
you give me the confidence that this is something that
I can handle. And time and time again, that's the
comment that we get. And that's and I'll pass them
to Sue or so will pass them to me when
we see them, and I'm like, this is exactly why
(37:56):
we're doing this.
Speaker 2 (37:57):
So they hit the nail on the head almost every
comment does.
Speaker 1 (38:02):
Yeah.
Speaker 2 (38:02):
Also what brings us back?
Speaker 3 (38:03):
Yeah, it's what's we're so passionate, both of us. We
created our what we're doing as a nonprofit because our
passion is to be serving those who are the family
caregivers and we are so passionate about it. And when
we get these messages, what they're identifying for us is
that we are on the right track. That the things
we struggled with, which was trying to find answers and
(38:25):
trying to find the details and that's why we're so
specific on focusing on those and that's what people are saying,
Thank you.
Speaker 2 (38:32):
You're bringing us what we didn't have.
Speaker 3 (38:33):
You're giving us the answers we didn't know, and that's
why we structured ourselves the way we did, and that's
why we picked the topics that we do. That's why
we bring in other experts, and then we also take
a long time working with each one of them before
we do the podcast episode so that we put them
in the best position to give the most amount of detailed,
quality information for our audience and that we're asking the
(38:58):
questions our audience needs the answers to.
Speaker 1 (39:03):
Thank you for the service. Thank you for putting this.
I don't know if you. And the thing is interesting
about the audience and demographic, about how many areas you
would have that you know that culturally they're very much
extended families, a lot of loved ones that just everybody
says together, cousins, uncles, aunts, everybody's just so close knit
and they find a way to going to take care
of their loved ones. And I also love the fact
(39:25):
you're able to go ahead and expand on the fact
that you can find favorable experiences, whether it's taking care
of a loved one at home or at an assistant
living facility, however that works, and that's warnful and also
just doing whatever it is to best accommodate and make
the last couple of years of that person's life as
best as possible. And that's real love. And I love
(39:49):
that you're doing that, and I love that you're doing
this podcast. So really, I think a lot of people
were going to say the same thing, thank you for
doing this, because I don't know who else can do it.
This is not like the first out on Imagine. It's
the first topic that we want to go to talk about.
This is set.
Speaker 4 (40:04):
Well, thank you for helping us get the word out,
because that's really it's no good if everybody if people
don't know about it.
Speaker 1 (40:09):
So great, So I want to go and take people
over to thecaregivers Journey dot com, thecaregivers Journey dot com
and real well, take a minute or two. There's a
lot of things besides the podcast. You have online course,
you have books. Three guys us your social media platforms.
Take us through what the Caregivers Journey does besides the podcast.
Speaker 4 (40:31):
So we do Facebook, We have a Facebook page and
group that we that we interact with that comes all
from all over the world as well, Instagram, LinkedIn support,
and then on the on the website itself, we have
podcasts usually around twenty five minutes.
Speaker 2 (40:47):
Every podcast has a matching blog.
Speaker 4 (40:50):
That's usually a couple of pages, so if you want
to read about the topic can quickly get the information,
you can do it.
Speaker 2 (40:55):
Through the blog.
Speaker 4 (40:57):
It's also it's just an it's really an alignment with
the podcasts very directly. We have Sue wrote a caregiving
book that before we even hooked up as for this podcast,
several years ago.
Speaker 2 (41:10):
It's fantastic. You can find that book on the podcast.
Speaker 4 (41:13):
On the website as well, we have as you as
you know, worksheets, guides, ebooks, there's.
Speaker 2 (41:22):
An e learning course.
Speaker 4 (41:23):
So we're trying and then we're getting ready to add
hopefully and just in the next couple of weeks a
resource page because we are investigating other resources that are
not developed by us. I went to a recent caregiving
dementia caregiver course that I took online for eight hours
to see if this is a good resource for our listeners.
So that kind of thing will also be online on
(41:46):
our resources page. So that we can connect people with
good resources that we can confidently say we've used, or
listened or or participated in. We're not just randomly putting
resources out there. These are ones we can confidently recommend
to our listeners.
Speaker 1 (42:03):
Also, I would recommend when you go to the website
there's a big blue donate button right there, non for profit,
make sure to go and help out these folks. And really, really,
Nancy and Sue, I appreciate you going to bring in
this forward to us and I'm glad I got a
chance to go and talk about this in the program.
You know, this is tough for me to talk about because,
like I said, I'm just thinking about things when it
comes to my family and knowing what I've seen firsthand,
(42:25):
and I think you've really cleared my kind of opened
my eyes to a lot of different things and I
need that. So I hope other people will latch on
subscribe to your podcast. It's all all major podcast platforms,
but all IM and as from Thecaregivers Journey dot com
and again, Nancy Treester Sue right, thank you so much
for being all with us.
Speaker 2 (42:43):
Really, thank you very much for having us.
Speaker 1 (42:45):
Absolutely, and folks, that's another podcast for show. Really appreciate
you taking time to go and join us and come back.
We'll have another episode for you next time.
Speaker 4 (43:02):
Back
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