Georgia Focus - Caregivers Journey

Episode Transcript

Speaker 1 (00:12):
Welcome to Georgia Focus. I'm John Clark on the Georgia
and Use Network. Nancy Treester and Sue Ryan are the
co founders of The Caregiver's Journey, a nonprofit helping families
navigate the overwhelming world of dementia caregiving. They've just launched
a free, easy to follow a guide called The Navigating
Dementia Caregiving Roadmap. Here to talk about that and their podcast,

(00:32):
The Caregiver's Journey are Nancy and Sue. Well, first of all,
you know, you guys do a wonderful job, I mean,
an excellent job, and so I'm glad you came along.

Speaker 2 (00:42):
I really am.

Speaker 1 (00:43):
First of all, you tell you your personal stories about
this before we get into everything else. Tell me how
you came out about this.

Speaker 3 (00:50):
My first caregiving journey began actually when I was in
my mid twenties, and caregiving roles have come into my life.
My last one ended years ago when my husband celebrated
his birthday back into heaven. So I've been on a
variety of dementia family caregiving journeys over the last forty years,
including my dad and my grandmother and my husband. And

(01:13):
I'm also a passionate communicator and really believe that when
something keeps coming into your life, you're meant to do
something with it. And then when Nancy and I reconnected
and we were talking about the frustrations we had, which
I'll have for share some more of, it seemed so
much like the right thing to do. I had already
started sharing in the space the way that Nancy and

(01:37):
I are, and it seemed like such a logical progression
to build on the experiences that each of us had
in order to support others.

Speaker 2 (01:47):
Nancy's, we talk about yours.

Speaker 3 (01:48):
Yeah.

Speaker 4 (01:49):
So, my father lived with Parkinson's for twenty five years,
my husband was front has temporal dementia for almost ten years,
and my father in law with al Teimer's for six years.
And one thing that Sue and I have in common
is we have dealt specifically with dementia.

Speaker 3 (02:10):
It's very close to.

Speaker 4 (02:11):
Us multiple times. And we got together and just were
lamenting how difficult it was to find advice and answers
on how to handle day to day diminsia caregiving challenges
and decided to start a podcast, which turned into a website,
which turned into a blog, which turned into guides And

(02:34):
here we are fourteen months later, just reinventing ourselves every
time we see another need, trying to find a place
where we can, hope, build a gap and make it
easier for people who are family caregivers for people living
with dementia.

Speaker 1 (02:49):
Now, and I follow your website too, in your podcast,
and you've done it now for a year, and you've
done like a little of forty am I right, he's
about forty of them so far.

Speaker 4 (02:58):
Yeah, forty five was tuesdayday.

Speaker 3 (03:03):
Say forty six tuesdays?

Speaker 2 (03:05):
Yeah, how do you do it?

Speaker 1 (03:07):
You're both in two separate locations, ones in Georgia and
one's in Florida. How do you get together.

Speaker 2 (03:11):
And do it well?

Speaker 4 (03:12):
Sometimes we do it separately and sometimes we do it together.
So we spend on the average about ten hours creating
a twenty five minute podcast. So we put our heart
and souls into making sure that we feel like we're
giving the very best advice we can to dementia family
caregivers in the most distinct way we can. And that

(03:34):
requires a lot of preparation, as you can imagine. So
Sue was just she just left Saturday and she was
up here for a week, and we went through and
created and recorded two podcasts while she was here, But
we do just as many, if not more, when we're separate.
We just do it over zoom or you know, we

(03:56):
prep over zoom or back and forth over email until
we feel like we've gotten the topic really tackled.

Speaker 3 (04:04):
What we both bring to it, though, is that we
came from the same place of frustrated because we couldn't
find answers and we didn't have a lot of time,
and so we said, we're going to do this. We're
going to take the things that people really need to hear,
and yet do it, as Nancy said, really succinctly. We

(04:24):
get right into the heart and soul of detailed tips,
and we push each other, we in our conversations, which
is why it picks so long. It's like that's not
succinct enough, that doesn't give enough information. How do we
make it easier? So we really put ourselves in the
heart and the soul of the person who's listening every time.

Speaker 2 (04:43):
And you also you get a lot of experts.

Speaker 1 (04:45):
A lot of experts come in and tell things, and
you watch these videos and you learn things. You learn things,
Oh I got to do that, you know, you.

Speaker 4 (04:52):
Learn things exactly right about fifty percent of our episodes
have a gap, and we we ask a lot of
those guests.

Speaker 3 (05:01):
As you know, John, you've been a.

Speaker 4 (05:02):
Guest, there's a lot of prep involved in It's much
more than what you what you do with your own
average podcast. But so far everybody's been up for it
that we're invited to be a guest, and we've gotten
a good education out to dementia family caregivers on topics
that step and I don't feel like we're.

Speaker 1 (05:22):
The experts the right right now, you have just launched
a free, easy to read, easier to follow guide called
Navigating Dementia Caregiving Roadmap And what is this?

Speaker 2 (05:33):
What is this?

Speaker 1 (05:34):
You've now put this out? It's free for everybody to go.
Where do they go to it? Tell us all about it.

Speaker 4 (05:39):
The nice thing too, is the episode forty six of
our podcast, the fourth episode that walk through a dementia
family caregiver through the roadmap. So there are four podcasts
they can listen to and and actually here I talk about.

Speaker 3 (06:00):
Every step of the roadmap.

Speaker 4 (06:01):
But it's a twenty step.

Speaker 3 (06:03):
Roadmap that we created with.

Speaker 4 (06:07):
All of our experience plus everything we've learned from others
at both experts like social workers who helped god dementia
family caregivers as well as other caregivers and experts in
our industry, and we tried to take what for both
of us was a very overwhelming process. You get a
diagnosis of dementia and you walk out the door and

(06:30):
you think, as a caregiver, where do I even start?
And either you have too much differmation because everyone's giving
you coming at you with you know, try you need
to do this and do that, look here and look there,
or you're lost, you don't have you can't find any
information for what it is you're trying to do, or
you just don't know you know, what do I need

(06:52):
to focus on now? And what can wait until later?
And so we've divided these twenty steps up into five
sections and we help describe how you know you're in
this section of the dementia caregiving stage. And so we
don't talk about the stages of dementia. We talk about

(07:13):
the stages of dementia caregiving and how do you know
where you are and that? And then what are the
things that you should focus on right now? And what
are the things that you can leave until later? Don't
worry about these other things because consciously you know the
time will come, so just focus on these particular steps
right now. So we've tried to simplify it down into

(07:36):
twenty steps and we've gotten just a fantastic response from
people in the market.

Speaker 2 (07:41):
Oh man, so you want to ask that too.

Speaker 3 (07:45):
Well, It's the biggest thing for where we were is
when we got started on our journeys, we didn't know
what to prioritize. We didn't know what we didn't know,
and we didn't know the answers the questions to ask.
And when we look at this now, what we did
is you can look through the entire guide and you
can get peace of minds knowing that when you get

(08:06):
to that stage or or if you're reading this guide
in your part way through the stages, you can go
back and look at things that might have been helpful
or that you might want to be doing in preparation
for it. But as Nancy mentioned, we think probably the
most important thing that we've done for this is we've
taken what's overwhelming and tried to make it underwhelming. We
tried to get very clear, very succinct, just do this

(08:30):
to get started, so that you don't have that feeling
of overwhelming frustration.

Speaker 1 (08:36):
Yeah, what are some of the What are some of
the things you do the first things you do as
a caregiver that you that you talk about in navigating dementia,
carrying the road map? What are some of the things
you do? Can you give us some of those?

Speaker 3 (08:47):
Now, I'll tell you. The most interesting thing is where
we start. We've got We've got a lot of eye
up the nurse.

Speaker 4 (08:54):
And then a lot of head nods. We we got
through it, but it starts with people looking at us
very strange. Okay, So our first step that we recommend
after you get a dementa diagnosis is to choose a
palliative care organization, and everyone looks at us like, what

(09:14):
in the world are you talking about?

Speaker 3 (09:16):
Exactly?

Speaker 2 (09:18):
Yeah, yeah, wow.

Speaker 4 (09:20):
So I can't tell them that why that's import it.

Speaker 3 (09:22):
Because it is interesting.

Speaker 2 (09:24):
Tell me the reason the.

Speaker 3 (09:25):
Reason we started with that is several reasons. One is
both Nancy and I missed the boat on it because
we have done incorrect information about it. And what we
learned when we talked to don Kolderman, who has been
in palliative care for over twenty years, and she really
explained it to us. We recognize that This is one

(09:47):
of the most incredible assets that you could actually have
because you can start using palliative care from the very
beginning of the diagnosis, and that's when you know you're
still working on let's look what can be the healthiest.
What are some of the options that we've got. And
it's both for the patient with the diagnosis as well

(10:08):
as the programs for you, the caregiver. And it's all
free of charge. It's paid for by medical well as
long as you're on Medicare. I need to call it.
As long as you're on Medicare. So the robustness of
what palliative care offers, and I'll make a really quick
distinction here where there is a lot of confusion about
palliative care and hospice is that many times the same

(10:32):
organization who has a hospice care offering also has a
palliative care offering, but their lens is different. When you're
in palliative care, you're still looking at life extending opportunities.
You're looking at medications, you're looking at activities, you're looking
at things that you can do. For some people, they

(10:53):
move from the diagnosis over a long, long period of time,
and then for others. Whenever the time period comes from hospice,
hospice is then available. And so it was a whole
different lens for us of having access to resources, education,
and support from the very beginning of your journey that
we had no idea about.

Speaker 2 (11:14):
Is it could be?

Speaker 1 (11:15):
Is it partially because you know that what the end is,
that this is gonna it's gonna get worse and it's
going to end. Is that why you look at that
that way?

Speaker 3 (11:26):
Part Part of the part for me was it was
explained as part of hospice care. Okay, and it was
and that's not that's not correct. It is its own offering.
It is often provided, not always, but sometimes it's provided
by the same organization that does also provide hostive share,

(11:46):
but they're not the same. Hospice care is when you've
decided that you're not going to do anything that extends life.
What you're going to do is support the quality of
life through the end of life. And that's not the
lens of palace, it's just care.

Speaker 4 (12:00):
Palette care is.

Speaker 3 (12:02):
Let's do the things that we could be doing to
be thriving in our lives right now, right.

Speaker 4 (12:07):
And you're and you're right, John, though palative care is
specific to people who have a life limiting disease, and
dementia is a life limitedency, So it does start.

Speaker 3 (12:17):
With that assumption.

Speaker 1 (12:18):
Okay, okay, and you just you just your stuff is
Alzheimer's and dementia. Really you don't deal with physical stuff
at all?

Speaker 4 (12:28):
Correct? Yeah, fortunately a lot of people have, you know,
multiple challenges. But but as long as dementia is in
the mix, right, our organization and website and sources are appropriated.

Speaker 2 (12:42):
Okay.

Speaker 1 (12:43):
Do you work with anybody like the Alzheimer's Association, all
the Alzheimer's associations, Yeah, we do.

Speaker 4 (12:50):
We work with the Alzheimer's Association, We work with the
Alzheimer's Foundation of America. We are a dementia startified organization
through the All Time Foundation of America. And we also
are working with Association for front had Temporal Dimentia as well.

Speaker 1 (13:08):
Oh really, oh gosh, okay, oh man, And look at
your website. You have all of your podcasts on the website.
But there's a lot of good information on that too,
thecaregivers Journey dot org and there's a lot of things
on there that you can think that you can go to.
Can you talk about send up some of that stuff
this on your website.

Speaker 3 (13:28):
One of the things that we found very important is
that we were at a at a supposium last week
and a woman came up and she said, we are
listening to you all through our neighborhood. We're going on
watch and we're listening to you. And one of the
things we recognized is that when we decided to do

(13:49):
the podcast, we also wanted to have from our lens.
We wanted to have a blog post so that all
the details of anything that we cover in the podcast
we have subsets of in the show notes, but we
have a complete blog post that brings all that information.
In addition, whenever we mention an resource, it's something that

(14:10):
we have already tested. So if there's anything on our
website that we feature, or if there's a partnership that
we have, it's because we've already worked directly with it
and we would be using it. So there's nothing out there.
We are a nonprofit, we're not doing anything. You know,
nobody can pay us to advertise on there, and so

(14:33):
everything that we've done we want to be very very
responsible so our listeners can trust. Whatever we have on
our site, is.

Speaker 1 (14:40):
It because of what you did when you were taking
care of the people that you took care of. You
experience it then or how do you experience it with
them instead of and then you.

Speaker 2 (14:51):
Talk about it.

Speaker 4 (14:53):
Often? Yeah, often, i'd say that what happens. But there
are times where we've learned about things okay after the fact,
and like palliatives here were soon I both missed it completely.
But we've educated ourselves as just you know, we wake
up and worry about dementia family caregiving every day and
we so we're focused on what's new and what's happening

(15:16):
and what's the latest. So we educate ourselves through a
lot of these experts, as you know, John, and find
things that we didn't actually leverage when we were dementia
family caregivers ourselves. But we want to make sure that
those things don't get missed by our listeners.

Speaker 5 (15:34):
So it's a combination, you know, you one of you,
I can't remember which one said about this recently, and
that doctors focused on caring for the patient, the caregivers
are left wishing someone would just tell them what's important
now are doctors.

Speaker 1 (15:50):
Are doctors getting it now? Are they still focusing only
on care for the patient, not the situation.

Speaker 3 (15:57):
And I think that's the little bit more complex answer,
because I don't ever want to speak for anyone else. Okay,
what I have noticed in support meetings and when I've
talked to other people is that there are some doctors
who are actually making some recommendations. But I don't really
know how widespread that is, and I can't find anything statistically.

(16:20):
I actually tried to ask that question and see if
I could statistically find the answer. What we're doing, what
we can control is that we're contributing to that that
we're taking what our information is and reaching out to
doctors so they become aware of it and they have
the opportunity, if they choose to, to be able to provide
that support. And the other thing that we share is, hey,

(16:44):
you know, if these are valuable resources for you, when
next time you go to the doctor, tell your doctor
and see if they want to start using them as well.

Speaker 2 (16:53):
Right right.

Speaker 1 (16:54):
I find that people that I deal with who have
Alzheimer's or dementia families they don't know what to do.

Speaker 2 (17:02):
I mean they, I mean like.

Speaker 1 (17:05):
They still are looking for somewhere to go, Like can
I get some help? Who can I ask who can I,
Where can I go for help? Where can they go
for help?

Speaker 4 (17:15):
Well, that's actually part of why we so first that
the roadmap is a great place to start because it'll
point to you and if you download it from thecaregivers
journey dot org, go to GUIDs, some worksheets, it's the
first guide that's out there navigating the caregivers caregiving roadmap.

(17:37):
And the reason the digital guide is.

Speaker 3 (17:42):
Profitable version is because.

Speaker 4 (17:45):
All there are lots of hot lengths and built into
each of the steps. So we suggest that you find
a support group. We provide you with a link to
the Alzheimer's Association Support Group Finder to go hunt around
and figure out how to find a support where we
provide you links about the guide so you don't have

(18:07):
to start from scratch. One of the things that I
think is important and interesting is if you choose a
palliatipcare organization at the beginning, as we reconcent the palliatipcare
organization will help you get through two, three, and four
because that's part of what they do. It's just said them.
It's focused on helping the patient but also the family prepared.

(18:31):
So it so there's lots of help out there. But
the guide is a fantastic place to start because it
will link you to all the different places you can
get support.

Speaker 1 (18:39):
Right, and you have something in there for pallative care
in there too, right you said.

Speaker 4 (18:45):
Palatif say you how to file, then okay?

Speaker 2 (18:48):
Is this is weird? Do you do you think? Do
you feel yourself not?

Speaker 1 (18:54):
I mean, you love this person, you love the individual,
But do you do you sort of back away from
because you know they're going to go away, not in
a bad way, but by doing this work with them
to help them out. Do you sort of kind of
back away from them at the same time? Does that
make any sense?

Speaker 4 (19:13):
It?

Speaker 3 (19:14):
Does you know? I think I don't.

Speaker 4 (19:16):
I think it depends on the person. I've actually found
that caregiving increased my empathy and concern and support and
focus on my care receivers more than I probably did before,
because you're used to them being an independent person and
managing things on themselves, and you really almost have their

(19:37):
card not to get completely wrapped up in their care
and what they's what they need all day, every day,
and not lose sight of yourself. So I think we
find caregivers falling often into the opposite that they get
so caught up in the in the other person and
what's right for them that they forget caregivet for themselves
as well.

Speaker 1 (19:58):
And then with the person finally dies, it goes away.
That really leaves you sort of like, wow, that's over.

Speaker 5 (20:07):
Now.

Speaker 1 (20:08):
Do you talk about getting help after they're gone?

Speaker 3 (20:12):
Yes, we talked. We don't talk a lot about that
in the in the guide, so we have in our
podcast episodes and we do in the in the information
we provide because one of the things that's really important
is finding yourself again, as Nancy mentioned, and getting back
to who you were and giving yourself permission to explore that.

(20:33):
I know that, and I was in oural giving support.

Speaker 4 (20:36):
I didn't what I call plain things on the shelf
and that I've consciously spent I tuned at this point
in time.

Speaker 3 (20:42):
To put this part of my life on the shelf,
and I'll come back and I'll look at the shelf
periodically and maybe I'll take it back down, and then
when my caregiving journey in, then I'll look at bringing
that back into my life and where I am at
that point in time. And so I was able to
positively do that and not feel like things were being

(21:04):
taken away from me because I was a caregiver, but
that I was a choice and I was choosing to
do this in the season of.

Speaker 2 (21:12):
My life, even though you didn't know how long it's
going to be.

Speaker 4 (21:15):
Right.

Speaker 3 (21:16):
No, we don't know those things, and that's what really
didn't matter.

Speaker 2 (21:21):
Where do you tell people?

Speaker 1 (21:22):
I know people where you should go as a caregiver's
journey go to the Carduga Journey at dot org to
find out everything about it and find out what to
do where to go? Should she also contact the Alzheimer's
Association or some of the Mittell Organization or something like that.

Speaker 4 (21:37):
We do recommend that you find a support group pretty
quickly in the process after the diagnose okay, that's actually
the step forward. Okay, And the support k final that
releveraged is from from the Altar Association website. One thing
to know the Alzheimer's Association. While the name is Alzheimer's,

(21:58):
it focuses on all types of dementia, so it's not
limited to Alzheimer's. It happens that Alzheimer's is seventy percent
of dementia and they fur started with Alzheimer's, but it's
not limited to Alzheimer's service one has some other type
of dementia. Police don't shy away from the Alzheimer's Association,

(22:18):
but there are other places in the community. Often someone's
church will have support groups as well as there are
Dinitia day centers with support groups, memory cafes, EXE. But
it is worth going out to the Alzheimer's Association getting
to know their website. Part of what we did in
the roadmap. The Alzheimer's Association website is very comprehensive. The

(22:43):
plot it's awesome, you know, as all things, the more
that they are, the more you don't know where to start.
So we point you to that particular website multiple times
in our roadmap, but we point you to the that
age you can go to as opposed to you that's
the whole website US.

Speaker 2 (23:02):
Is very comprehensive.

Speaker 1 (23:03):
That that I don't know if they can leave anything
anything no stones unturned.

Speaker 3 (23:11):
Is anything that we when we specifically talk and step
four about support groups, we also teach you how to
go and find a support group in your area. So
we don't know what those are going to be, but
we teach you how to ask the question to find
it locally in your area, and then we've also got
the link to go directly to the Alzheimer's Support Group

(23:32):
Finder and that's what they the Alzheimer's Association Support Group Finder.
And then the other option with that is they have
a twenty four seven helpline and one of the things
that you can do is call and say I'm looking
for a support group and they have a variety of
different resources that can help you navigate that. So we
include in their different ways for you to connect to

(23:55):
find that because we know how important it is for
people when they're ready to find a support group to
be able to find one right away.

Speaker 1 (24:02):
Definitely, definitely where can people go to find the Navigating
Dementia Caregiving Roadmap.

Speaker 4 (24:08):
So on our website, thecaregivers Journey dot org, there is
a page called Guides and Warpsheets and there's also an
icon on the front page on the homepage where you
can just click on the icon as well you click
on guides and Worksheets. Then the very first guide that

(24:30):
you'll see is Navigating Dementia Caregiving Roadmap and you can
download it directly from our site, and then you've got
all the hot lengths available to you in that digital version.

Speaker 1 (24:42):
Well, guys, I thank you so much and I really
enjoy talking to you, and I'm glad you came on
this morning and it's I know you're doing great work.
You're doing great work. Thank you so much for doing it.

Speaker 3 (24:52):
Thank you for the great work you're doing, and thank
you for giving us this opportunity to help dementia family
caregivers to learn more more about ways to get the
valuable support that they need. And so we're all on
this journey together.

Speaker 1 (25:06):
We are, we are, We're gonna get there, We're gonna,
we're gonna, we're gonna cure this thing one day.

Speaker 2 (25:10):
Thank you all.

Speaker 4 (25:11):
Both.

Speaker 1 (25:13):
That's Nancy Treesher and Sue Ryan, founders of The Caregiver's Journey.
You can find out more about them and listen to
their podcast on The caregivers Journey dot org. For questions
or comments on today's program, you can email me John
Clark at Georgiannewsnetwork dot com. Thanks for listening. I'll talk
to you next week right here in your favorite local
radio station on Georgia Focus