Subscribe
Share
Share
Embed
Now or Never: Long-Term Care Strategy is a podcast for all those seeking answers and solutions in the long-term care space. Too often we don’t fully understand the necessity of care until it’s too late. This podcast is designed to create solutions, start conversations and bring awareness to the industry that will inevitably impact all Americans.
Patti LaFleur: By having a
system that was predictable for
both of us, it allowed her to be
successful. It allowed her to
engage in activities with me
because I could schedule the
activities during the times. I
knew she would be successful.
Caroline Moore: Welcome to Now
or Never Long-Term Care Strategy
making. themselves. with Kosta
Yepifantsev a podcast for all
those seeking answers and
solutions in the long term care
space. This podcast is designed
to create resources, start
conversations and bring
awareness to the industry that
will inevitably impact all
Americans. Here's your host
Kosta Yepifantsev.
Kosta Yepifantsev: Hey, y'all,
this is Costa and today I'm here
with my guest, Patti, certified
dementia practitioner Caring
Across Generations care fellow,
former full time care partner
and current advocate and
educator for dementia. Today
we're talking about creating
systems, routines and success as
a caregiver. Welcome, Patti,
would you mind sharing a bit
about your personal story of
caregiving with your mom, Linda,
and how your work as an advocate
began?
Patti LaFleur: Yeah, so I
started caring for my mom, Linda
about three years ago, she got
diagnosed with younger onset
mixed dementia in when she was
about 62. She moved in with me
three years ago, because my dad
was caring for her at the time,
but it became too much for him
to care for her. So she moved in
with my husband and I, and we
never looked back, we lived a
life that was full. Still,
despite her dementia. Despite
her type one diabetes, we lived
a life that was full of love and
light and beauty and dancing and
laughter. And we just really
tried to live in the moment as
best as we could. Sadly, she
passed last year due to
complications with her dementia
and her diabetes. But since she
passed, I've really used my
voice and our story as something
to really challenge the stigma
around dementia and Alzheimer's
advocate for caregivers and
advocate for the people living
with dementia. They can live a
beautiful, wonderful life,
despite the challenges of the
diagnosis with the right care
systems in place that support
them. So it was truly just a
beautiful opportunity that I got
to provide her that space.
Kosta Yepifantsev: And we are
very excited to know more about
those systems. Before we get
started, just in case people
don't know what is the term
mixed dementia?
Patti LaFleur: Yeah, so dementia
is an umbrella term that many
different types of dementia fit
under Alzheimer's being the most
common and the one that most
people are the most familiar
with. What mix dementia means is
that she had multiple types of
dementia. So she didn't just
have Alzheimer's or vascular she
had a combination of two or more
dementia is the thought was
vascular and Alzheimer's. That
is why it was a mixed dementia
diagnosis as opposed to
Alzheimer's or FTD, or vascular
Lewy Body any of the other
dementia.
Kosta Yepifantsev: I see. So as
a caregiver for your mom who had
mixed dementia, what were some
of the unique challenges that
you yourself faced, and how did
you use systems and routines to
overcome them?
Patti LaFleur: I think that the
biggest challenges for me were
the activities of daily living.
So as my mom's dementia
progressed, she needed support,
she needed support in the
bathroom, she needed support
with showers, she actually also
had fallen and broken her hip
about a year before she passed.
So she needed help with lifting
and walking. So she needed a lot
of physical health to be
successful in living her daily
life. So those were really
challenging. Another really
challenging piece for us that
was different than other people
was that she also had type one
diabetes. And so that required a
lot of managing her blood sugar
in addition to and medication in
addition to her dementia. And
then another thing that was just
a huge challenge was watching my
mom lose pieces of herself right
watching. It was hard to lose my
mom but watching her lose
herself was even harder for me.
Kosta Yepifantsev: Was it
paramount for you to develop a
schedule like If you didn't have
a schedule in place would every
day be considered just chaos
Patti LaFleur: 100% I mean
schedule and routines and
following the same activities
every day. Yeah, supported her
dementia, but also and supported
her diabetes, like we needed to
follow a schedule, we moved in
with me. And overnight, I was
like, we're going to establish
something that is a schedule for
her, we're going to eat at the
same time, we're going to nap at
the same time, we're going to
make sure that everything kind
of happens at the same time. And
by having a system that was
predictable. For both of us. It
allowed her to be successful, it
allowed her to engage in
activities with me because I
could schedule the activities
during the times, I knew she
would be successful, right. So
we would do art class at this at
1045. Because I knew she would
have had breakfast at a nap,
gotten up, gotten ready have
gone to the bathroom, taking a
shower, whatever it looked like.
And it allowed her to be
successful in art because it was
predictable. It was the same
thing every day. And yet not
every day was art class. But it
was okay then it was music. Or
it was we're gonna do a go for a
walk, or we're gonna go visit a
friend. We followed a routine
and it helped her to go to sleep
at night. It helped me to have
tools for her sundowning, right,
like there are difficult parts
of the journey, like sundowning
and emotions and these things,
but by having a routine, I knew
that that time was coming. So
did I schedule art class during
that time? No, I scheduled like,
Let's hang on the couch and
cuddle our dog and watch TV.
Right like something that was
predictable?
Kosta Yepifantsev: Was it a full
time job? I mean, it sounds like
you weren't just working an
eight hour job. It seems like
you were working literally 24
hours a day.
Patti LaFleur: 100% Yeah, yeah,
for sure. When I and when she
first moved in with me, I was
teaching and so I had a
caregiver that came in to do
things well, and I was teaching
from home because it was the
pandemic. So I had some
flexibility, right. During
lunch, I would go down and eat
lunch with my mom. And then I
would go back up and teach right
because it was a weird time. But
then I ended up quitting my job
because it was it was a full
time job to really follow a
schedule that was going to allow
her to be successful, and me to
be successful. Because if I
wasn't feeling successful, she
wasn't right.
Kosta Yepifantsev: What are some
of the advice that you could
give to people who are starting
their caregiving journey? And
are there any essential steps
they should take to establish
successful practices from the
very beginning?
Patti LaFleur: I think one of
the biggest things is to know
your person, right. So the
person for me, the thing I knew
about my mom is that she liked
to take a nap. She liked to get
up in the morning. So I
established a schedule that was
reflective of what I knew about
my mom. I knew my mom liked to
go to bed a little bit earlier
than others. So I made sure that
our day started a little bit
earlier, our nap was earlier.
And that allowed her to go to
bed at a time that was
reasonable for her and allowed
me to have time, right she would
go to bed at nine and I would
get an hour and a half of just
me time I could watch my you
know trashy TV and call my
girlfriends and drink a glass of
wine, you know, and allowed B to
be successful. And I think that
that's something that as you're
establishing a schedule, it's
important to know your person.
But it's also important to
create a schedule or routine
that allows you to be successful
because I'm just as important in
the care partnership with my
mom. And so I needed some Patty
time I needed time. I couldn't
just go tell she went to sleep
and then I went to sleep and
then I woke up with her like
that. I would have never
survived I'd been like I need
the honey that wants some trashy
TV, I need to watch the
Kardashians or whatever. Right?
Absolutely. That's not something
I'm watching with my mom.
Kosta Yepifantsev: I feel like a
lot of times when people are
confronted with this paradox of
having to take care of you know
a mom or dad or spouse for that
matter. I think a lot of times
they feel like they know best.
And so they create a routine
that suits them, and then they
try to get the individual to fit
within their routine. Yeah, I
think that was really
interesting that you understood
your mom well enough to be able
to create schedules routines to
be able to create a lifestyle
essentially, that would keep you
from burning out which happens
to so many managers on a daily
you know on a daily basis. He
says Honestly, how did you keep
from from burning out?
Patti LaFleur: I mean, it's, it
goes with the territory that
there are times that I did
probably feel burned out. But I
also something that was really
important to me was establishing
some respite. So I unfortunately
did not have a family that could
help provide respite for me, my
husband was incredible and what
hang with my mom, so I could go
to the store do things, but he
couldn't care for her overnight
because he couldn't do the like
activities of daily living and
those pieces, which is so fair.
So I needed to figure out what
respite would look like for me.
And for me that look like her
going to a memory care facility
every six weeks, and just doing
a couple nights where she was
there, and I was here. And it
allowed me to not get lost in my
caregiver journey. It was I
identified so much as a
caregiver. But I also needed to
remember that I'm ready. And I'm
a person that also that's just
not all I am. And so that
allowed me that space, I didn't
need a break every day, I didn't
need a break every hour, you
know, I just needed a routine
that allowed me to have some
time for myself in my daily
living. And then I needed
something that I could look
forward to Right. Like she goes
there. And I sleep and I see my
girlfriend's and I, you know, I
know and do whatever I want.
That is so and I, it was pretty
late in the journey that I
figured that out. And so I think
that if I was thinking, what
would I do differently, I would
have thought about how I could
build and respite earlier on.
And I just I was so you know,
we're all overwhelmed when we
get into a caregiver journey.
But I think that, that respite
piece, and like really having
some time to be yourself is so
important.
Kosta Yepifantsev: I think
sometimes caregivers they feel
this guilt of you know, first
off, they are superhero
individuals. So yeah, somebody
to take on the responsibility of
caring for another adult person,
even if it is a family member is
an enormous task. But it's the
it's the emotional toll that it
takes doing it day in and day
out, like, you know, when you
run like a marathon, and you
don't want to stop, because you
don't want to give up, right?
You don't want to walk to the
end of the race and say I
couldn't finish. And yeah, I
think that there's this stigma
around caregiving where it's
like, I have to do all of it.
Exactly. And, and so I speak
with caregivers regularly about
you don't have to be a
superhero. First off, you're
human.
Patti LaFleur: Right, for sure.
Grace. Exactly. Yeah, exactly.
That's something that I think
about a lot too, is that like, I
would struggle because I was
like, Oh, I'm the only person
that can care for my mom, and I
can care for my mom the best.
But that doesn't mean someone
else can't care for my mom, good
or great or even Right? Like, I
know that I could care for her
better than someone else. But
that doesn't mean that somebody
else can't care for her. And I
think that's such an important
piece. Like once you kind of get
out of your head about that.
It's easier to let someone else
like I just had to let go of the
fact that I'd pick her up. And
you know what, her hair wasn't
gonna be curled. Oh, dang it,
you know what? I mean?
Kosta Yepifantsev: People like
that, that sets people just down
the rabbit hole when they went
back, and their hair isn't
curled. Or, you know, Yeah,
something's out of place. You
know? Yeah, that's why I'm like,
is
Patti LaFleur: she breathing in?
And she's smiling. Okay, cool.
Is she even if she wasn't
smiling, like, Okay, well, she's
smile again? Probably.
Kosta Yepifantsev: How did you
how did you reconcile? You know,
you're, you're so young. And you
know, like, your life was just
kind of getting started. You
were starting your career as a
teacher or you may have been,
you know, maybe less than 10
years into your career. Like,
how do you reconcile putting
your life on pause for, you
know, two or three years to
become a full time caregiver?
Patti LaFleur: You know, I
didn't, I was pretty resistant
to that at first. I mean, I
really am someone that very much
identifies in the roles I'm in.
So I very much identified as an
educator, that was something
that was really important to me.
But then as I started to care
for my mom full time, and I was
working full time, I just
realized that I couldn't give
100% to either of them. And so I
just didn't feel great. And I
remember I would just
continually kind of just talk
about how I didn't feel great
and I didn't feel I just felt
really overwhelmed and my
husband, sadly had lost his dad.
A few years before I, before I
started caring for my mom, and
he was like, I would do anything
to have had more time with my
dad, though no matter what we
can make this work, so that you
get this time with your mom and
really get to enjoy it, because
I wasn't enjoying it when I was
working two full time jobs, you
know, it was like, Okay, this is
not bad. We're just surviving.
And then once I was able to let
go of one piece of my life, I
was able to really focus in on
the time that I really got to
enjoy with my mom.
Kosta Yepifantsev: So as the
disease as dumb as the dementia
progresses. Okay. And, you know,
unfortunately, dementia is
something is a condition that
doesn't reverse. Right. Once
you're once you have dementia,
it's a it's a consistent
decline. How did you happen to
adapt your routines to better
kind of accommodate those
changing needs?
Patti LaFleur: Yeah, I think
that one of the biggest things
for me is I, whenever there was
a pretty significant decline, I
reached out to her doctor, and
we received some home health
services. So then I would have
occupational therapists come in,
have physical therapists come
in. And so they really helped me
to think about from a safety
aspect, what it looked like,
what a tasks do I need to have
my mom's still really be helping
with and participating in and
what other tools can I put in so
that I can take some of those
things off. And so as I would
learn tools or strategies to
support my mom, it changed the
timing that it would take for us
to do things. So then I just
adjusted the schedule to meet
that to focus on it at from a
safety aspect for me, especially
after she fell and she was in a
wheelchair. I mean, that changed
the dynamic pretty
significantly. Overnight, right?
And so that impacted those
pieces, but then I really just
tried to keep the schedule, as
similar as possible. As far as
kind of the big ticket items,
right? We always had our meals
at the same time. I all I mean,
naps, maybe we're a little bit
longer. And maybe she slept in a
little bit more in the morning.
But it just was very fluid
around the pieces I could
change. But then staying really
consistent with the things that
were working. I mean, I think
that's the thing is, so often a
decline happens. And then we
start to think about what the
person living with dementia
can't do. But what I tried to
think when there was a decline,
like, okay, she's in a
wheelchair, so she can't stand
to shower, but she can still sit
and help me wash or she can
still fit and attend to her art
class. Like she's not going to
go in person to an art class,
but we could do art at home. So
how can we still do the same
things, but I make the
adjustments so that she can
still attend to whatever the
task is at hand, it just might
look a little different,
Kosta Yepifantsev: you know,
that we talked a little bit
about how Dementia is a
something that progresses and
it's a consistent decline in
terms of health. And I'm going
to ask you, it's it's kind of
like a technical question, you
know, but systems and routines
has to have some technicality to
it for it to be successful.
Yeah. And when you're when
you're providing care for
somebody, especially, you know,
a family member, you're wanting
to see the little positive ray
of sunshine and light, you know,
in, in your relationship to know
like, okay, you know, all of
this is worth it. Because, you
know, for that brief moment, I'm
going to be able to have, you
know, my mom, as I knew her
prior to this condition. How did
you? How did you reconcile,
like, how did you go it day in
and day out waiting for those
moments, but consistently
staying true to the fact that
you wanted to provide the best
possible care for her just so
that you could wait for that one
period? Where you're like, Okay,
this is all really working.
Patti LaFleur: Yeah, I think for
me that those moments came
through some of the activities
that we did together. So I
really tried to provide her
opportunities in music and art,
especially. Those were things I
mean, even a couple of days
before she passed, we were still
engaged in art together. It may
be looked different, right? Like
I was saying like, but she was
still able to do art and just
wasn't the way that maybe we
traditionally would think about
art but she still was able to
attend to those things. And
through those activities, we
were able to connect, we were
able to laugh, and she still was
able to make choices. You know,
she wasn't able to make choices
in a lot of areas of her life.
But in art, she could pick the
color. And she could pick her
paintbrush even when she didn't
have the word she could point or
she could grab. So really
creating these opportunities
where we could sit side by side
create together, she could
create and then I could ask
questions, I even if she didn't
respond to the questions with
word she could respond, I could
tell it with her eyes. Or I
could point out like, Oh, I see
that you're looking at the blue,
do you want to try the blue and
she could nod her head. So I
just these moments where we
could share an experience
together really kept me going.
We laughed so much during those
things. I mean, she would always
make this little sound like
diddly doo diddly with the
painting. It was like her happy
sound. And I could tell that she
was enjoying the art without her
saying I had fun doing art with
you. Right, I could just see it.
And those were the moments that
kept me going and the quiet
moments, you know, we'd look at
books together, we'd be together
on the couch, and we could hold
hands. And I could see the love
in her eyes, even though she
didn't have the words. But
really, these opportunities to
create art together in a variety
of ways was so beautiful for us.
Kosta Yepifantsev: And I do want
to congratulate you on launching
your first course Dementia Care
connecting you. That's pretty
awesome.
Patti LaFleur: Pretty silly.
Kosta Yepifantsev: I mean, I
mean, you've you found success
in it, obviously the connection,
the fulfillment. You know, like,
like I was saying earlier living
day in and day out and finding
unique applications to be able
to still connect to the to the
person that you care for. What
do you hope that it brings to
other families that are
struggling with finding
semblance of normalcy in the
care process when it comes to
dementia?
Patti LaFleur: I think that for
me, my hope is that art just
becomes a tool for connection
for people living with dementia.
So for me, it's about like the
person living with dementia
still deserves to have these
opportunities to create and to
explore and to feel successful.
And then I My hope is that the
care partner, the person that is
providing the care, is also
having this opportunity to slow
down and live in the moment and
just really focus on something
it can feel extremely
challenging to find something to
do with your loved one, right?
They my mom couldn't attend to
games in the way that I knew she
had liked before puzzles were
challenging. I mean, we we tried
a lot of different things. And
art was something that she could
feel successful doing throughout
the whole process. And my mom
wasn't an artist. I wasn't not
an art like that. It's so funny.
Like that was not that's not us.
But it became this face that
allowed us to have these
opportunities that we wouldn't
have had in trying to play Go
Fish or something that I would
have thought that she could do.
Like,
Kosta Yepifantsev: yeah, it was
kind of like a relationship,
mother daughter relationship as
opposed to a caregiver. And
somebody that's receiving care
relationship. And it's it's
hard, especially as dementia
progresses to late stages. It's
hard to break out of that
caregiver relationship and find
some normalcy. So I think that's
fantastic, that you actually
picked an activity that you guys
had never done. And it's still
Yeah, and you guys were able to
build a friendship around that.
And for a moment, you know, just
be mother and, and daughters.
Patti LaFleur: Yeah. And she
just felt so successful. I think
for me that that it felt really
hard for me to find places for
her to feel successful. Like we
all want to feel successful. And
there was so many places where
she had had so much taken away
from her. But that was a place
where she could just express and
be and just live in that moment
with me and we could happen. She
could sing our little song. It
just became a beautiful space
for her to feel successful.
Kosta Yepifantsev: Yeah. You
know, Patti, I think something
we overlooked so often in the
care process is utilizing
community. So What strategies
can caregivers use to involve
other family members or friends
in the care process and create a
support network to share the
responsibilities?
Patti LaFleur: I think that some
of the Biggest strategies is,
like I said earlier is just
being okay letting go something
for me, my sister would come up
and she wouldn't have been
around a lot. And I would be
like, she's not doing it right.
Or did you see what say that
you're like, so worried about
it. But my mom was happy, my mom
was clothed. My mom was bad.
Like, yeah, you have to let go
of some of those pieces. If
someone shows up to help you and
support you, like welcomed them
with open arms, you know, as
long as it's safe. But if the if
your loved one safe, welcome
them and just use that as your
time, right? Like, it's, they'll
be okay, and just let those
little things go, that may be
bothered you, I definitely had a
really hard time with it. So I
understand that. The other piece
about getting people involved
for me, is really thinking about
kind of two things. One thing is
thinking about how you can
delegate tasks. So there might
not be someone that could come
to your house and could provide
care, they might not feel
comfortable, or they might feel
like they are they live far
away. But they could do grocery
delivery services for you. You
they could pay for your house to
get cleaned. There are some
tasks that that someone could
help with, even if they're not
willing to come in the home.
Another thing that I did is we
created an Amazon wishlist when
my mom moved in with me, and I
put all the things that we
needed, you know, incontinence
supplies, and low shades and art
project. I mean, so many things,
and I just posted it, and my
friends and family were able to
just buy specific items that
helped us along our journey,
because like, they didn't know
what we needed. You know,
they're like, What do you need?
And I didn't know what we
needed. I'm like, oh, I need
help.
Kosta Yepifantsev: Do you feel
like you were kind of cutting
edge like in terms of how you,
you provided care? And the only
reason I bring that up is
because the things that you're
describing? I mean, even like,
you know, for me, it took us
years to figure out, you know,
how to optimize certain
processes. And when you were
describing the Amazon wish list.
Like I just remember when that
happened for us. We were like,
Oh my gosh, why did we not think
of the sooner you know what I'm
saying? Yeah, that's the first
thing I did. You know,
Patti LaFleur: I just very, very
clearly like people to help me.
Okay. Well, and it just Yeah, I
don't know why it came to me. It
just like people kept asking me
what I needed. And I was like, I
don't have time to keep telling
him what I need. I think it just
became a time management thing.
I was like, in survival mode.
And then I did it. And then
people were sending us things.
And I was like, Oh, wait, people
are here to help. Okay, let me
put more on there.
Kosta Yepifantsev: Yeah, yeah.
Do you ever encounter and we're
about to wrap up. But I just
wanted to ask you one more
thing, did you ever encounter
people who don't have the means
to, you know, not quit their job
they have to work or that don't
have the financial means or even
the tech means to be able to
find the type of solutions that
you did? And for those types of
people, like what do you say to
them to give them some level of
solace, so that they continue to
stick with it? You know?
Patti LaFleur: Yeah, I think
that there's kind of two things
that I think about when I think
about that is the first thing is
like, what kind of support do
you have for your own mental
health? Because if you don't
have the financial resources to
hire help, or quit your job, or
these kind of things, what kind
of support systems do you have
in for your mental health?
Because an emotional health
because those things are really
going to carry you along? So are
you in a support group? Do you
have one other person that is a
caregiver that understands what
you're going through that you
can just even bet to or they can
provide support or resources.
And the other thing is like,
there is like, areas Department
of Aging, like I called my
County Department of Aging, like
that was one of the first things
I did. And they were like, Oh,
we have this respite grant. And
we have you can apply by doing
this. And, and so immediately, I
was like, oh, there are some
resources. They do involve tech.
And they do involve some other
things. But I do think if you
reach out to your local
Department of Aging, you can
learn that there are some
resources in your area that can
provide some help. And if you
have, let's say, even four hours
a week, that's four hours where
you can maybe find another four
hours. Yes. Those supports that
allow you to keep going.
Kosta Yepifantsev: Absolutely.
So we always like to end the
show with a call to action. Will
you share a few of your favorite
resources or organizations that
can provide additional guidance
and support for caregivers
looking to establish successful
systems and routine teens in
their caregiving journey
Patti LaFleur: yeah so I mean I
just already said like calling
your local Department of Aging
is like number one I tell every
person like that's where you
start because it no matter what
your question is, do you need
quick like support with little
your stuff or you need stuff
with like getting your power of
attorney, they can help navigate
for the things that are within
your local area, right? It's so
hard because so many people are
in so many different places, and
there's different resources per
county. So that's one beautiful
one. And another one that isn't
necessarily for the care
recipient, but for the
caregiver, especially for me,
with my mom being younger onset
is called Lorenzo's house and
Lorenzo's house is
unapologetically focused on
younger onset Alzheimer's and
dementia. And they provide
support for the care partners,
care partners, spouses, and
specifically youth as someone
who went to support groups and
was the youngest person there by
a lot it. Just even having
someone that was like my age
would have been so lovely and
Lorenzo's house provides that
space for youth and I mean they
have programming from for eight
year olds all the way to like 35
year old youth that are caring
for a parent. So it's just a
really beautiful space for
younger onset families because
that is not something that is
really talked about or focused
anywhere else.
Caroline Moore: Thank you for
joining us on this episode of
Now or Never Long-Term Care
Strategy with Kosta Yepifantsev.
If you enjoyed listening and you
wanna hear more make sure you
subscribe on Apple podcast
Spotify or wherever you find
your Podcasts, leave us a review
or better yet share this episode
with a friend. Now or Never
Long-Term Care Strategy is a
Kosta Yepifantsev production.
Today’s episode was written and
produced by Morgan Franklin.
Want to find out more about
Kosta? Visit us at
kostayepifantsev.com