0:05

I always ask how

0:05

many of you are family

0:07

caregivers right out of the red

0:07

out of the gate? And you might

0:09

get like a few hands like, Oh

0:09

yeah, I'm here. But then as I

0:12

talked about what a caregiver

0:12

actually is, and then I asked

0:15

again, then like all these hands

0:15

like shoot up and you're like,

0:18

oh my gosh, I am doing all of

0:18

that. That's a caregiver. I just

0:21

thought I was helping.

0:22

Welcome to Now

0:22

or Never Long-Term Care Strategy

0:26

making. themselves. with Kosta

0:26

Yepifantsev a podcast for all

0:29

those seeking answers and

0:29

solutions in the long term care

0:32

space. This podcast is designed

0:32

to create resources, start

0:36

conversations and bring

0:36

awareness to the industry that

0:39

will inevitably impact all

0:39

Americans. Here's your host

0:43

Kosta Yepifantsev.

0:45

Hey ya'll it's Kosta. Today, I'm here with my guest, Annalee Krueger,

0:47

founder and president of care

0:50

riping, senior care advisor,

0:50

author of the invisible patient,

0:54

and working in a long term care

0:54

industry with seniors and

0:58

families for over 30 years. And

0:58

elite like so many of us your

1:02

introduction is senior

1:02

caregiving happened at home,

1:05

will you tell us about growing

1:05

up watching your parents care

1:08

for your grandparents and how

1:08

that shaped your career?

1:11

Sure. So I'm 51.

1:11

And so back when I was growing

1:16

up in the 70s, we didn't have

1:16

all these different levels of

1:19

care for our grandparents. And

1:19

so if they weren't able to

1:23

manage at home on their own,

1:23

they did one of two things, they

1:26

either moved in with their kids,

1:26

because there wasn't any other

1:29

option other than a nursing

1:29

home. And nobody wanted to do

1:32

that. Right. So so our whole

1:32

family actually took care of our

1:37

grandparents. It wasn't just mom

1:37

and dad, it was like, as a

1:40

little girl, I'm helping bathe

1:40

my grandmother, I'm putting the

1:42

powder on her and I'm getting

1:42

her dressed and putting on her

1:46

sandals. And, you know, with my

1:46

grandfather, he he didn't need

1:51

hands on care, but he needed the

1:51

socialization, because he was

1:54

right. I'm a farm kid. So he was

1:54

riding horses with us, he's

1:57

feeding the cows, and he's on

1:57

the combine with us, you know,

2:01

so he just needed the activity

2:01

and the structure and the and

2:04

the companionship of family. So,

2:04

but I saw just how how hard it

2:10

was to meet their needs. Because

2:10

especially with my grandmother,

2:15

her she was very chronically

2:15

sick. And so it was just, you

2:18

know, it was just a lot of just

2:18

a lot of work to take care of

2:21

her. And then shortly after,

2:21

like a year after my grandmother

2:27

who, who needed the most care,

2:27

moved in my oldest sister went

2:31

missing. In college, she, she

2:31

became a missing person. And so

2:38

on the weekends, my dad and my

2:38

brother would drive to Nebraska

2:43

to try to find her. And so then

2:43

my mom and the rest of my

2:47

siblings would manage the farm

2:47

and take care of the

2:50

grandparents. So I saw that how,

2:50

how, like, life just unfolds

2:56

like life has its own agenda.

2:56

And we're constantly getting

3:00

thrown curveballs. And when

3:00

you're a family caregiver, that

3:04

that dedicates a lot of time and

3:04

energy. But it also all these

3:09

other things in life happen. And

3:09

you can't just like, Okay, well,

3:11

you're on your own Grandma, you

3:11

know. So I saw how just life

3:15

happens. And we're always thrown

3:15

curveballs. And we had a family

3:20

crisis. But we still, we still

3:20

honored our promise, we were one

3:23

of the families that made the

3:23

promise that we'll take care of

3:26

you. And we did, but it wasn't

3:26

always easy. So. So that's what

3:32

led me into working in social

3:32

work. And I knew when I was nine

3:36

years old, because this was all

3:36

kind of unfolding when I was

3:40

nine. And I was like, I just I

3:40

know that this is how I want to

3:43

help families because we can't

3:43

possibly be the only family that

3:46

this is happening to. And boy,

3:46

was I correct? Because now fast

3:50

forward, we're in the silver tsunami.

3:53

Absolutely.

3:53

And I mean, one of the things

3:55

that I talk about often is how

3:55

we've shifted from this multi

3:59

generational family unit where

3:59

you took care of your parents

4:04

that your parents moved in with

4:04

you and a lot of cultures still

4:06

do that. But like, as you talk

4:06

to families, and you reference

4:12

back to your own experiences,

4:12

what what do you think has

4:16

changed in our society that's

4:16

prevented people from taking on

4:21

the responsibility like you and

4:21

your family did?

4:24

A lot has

4:24

changed in our society. Number

4:27

one, it seems like in my

4:27

opinion, in my opinion, when I

4:32

first started out working in

4:32

long term care, I started out as

4:35

a social worker and admissions

4:35

coordinator. Then I moved up

4:39

into executive director roles

4:39

into CCRCs continuing care

4:43

retirement communities, but part

4:43

of that job when I was an

4:47

employee, so it was a job a part

4:47

of that job was always to do the

4:51

tours. The tours, were almost

4:51

always with the adult kids,

4:56

because mom or dad was in the

4:56

hospital so there's no way

4:59

they're coming. out to tour,

4:59

right? And then the hospital

5:01

will say, here's a list of

5:01

facilities go find one by noon

5:04

tomorrow because we're

5:04

discharging. Well, it just seems

5:07

like back in the 90s. When I was

5:07

starting out as a new social

5:11

worker, it just families lived

5:11

down the street from each other,

5:15

they lived in the same zip code,

5:15

or at least in the same time

5:18

zone, right. And so there was

5:18

that kind of family cohesiveness

5:21

and everybody just pitched in

5:21

just like farm kids, we all just

5:24

pitched in, because that was for

5:24

the greater good of the family,

5:26

right. But in time, by the time

5:26

I left corporate America and

5:31

started my own company, and 2011

5:31

families don't live near each

5:34

other. It's rare that even as a

5:34

family consultant, that we have

5:38

a family that the nuclear family

5:38

is all in the same state, like

5:41

same timezone. So I think what's

5:41

what's shifted is this, the

5:46

profile of the typical family,

5:46

you know, they have to move away

5:50

because they get married, or

5:50

they jobs, they have to follow

5:53

the job. Or maybe their family

5:53

dynamics were such that they're

5:56

like, I don't want to stay in my

5:56

hometown, or I don't want to

5:59

stay so close to mom and dad,

5:59

the relationships not great. So

6:02

between the economy and the

6:02

family relationships. And I say

6:06

that just because as a family

6:06

consultant, 92% of my clients

6:12

come to me in crisis, because

6:12

there's been some terrible thing

6:16

that has happened, or the family

6:16

is kind of woke up and realized,

6:19

Oh, dad is more demented than we

6:19

thought we need to probably do

6:22

something and yes, you're you

6:22

do. But also, there's just so

6:27

much, there's just so much

6:27

denial, you know, with with

6:30

families thinking that their

6:30

parents are doing better than

6:32

they are. And so when you layer

6:32

on all those kind of opinions or

6:36

perspectives, with adult

6:36

children, about their parents,

6:40

then there's those relationship

6:40

rifts as well. And it seems

6:44

like, in my opinion, when

6:44

families started moving away

6:49

from each other, if they didn't

6:49

invest the time, the effort, the

6:53

energy and the resources and

6:53

maintaining those relationships

6:56

with each other as siblings, and

6:56

with parents, then when there's

7:00

that medical crisis, Dad falls

7:00

and breaks his hip, or mom dies

7:04

unexpectedly, and she's the

7:04

caregiver to dad, then they have

7:08

to get reacquainted as siblings

7:08

and as a family. The other

7:12

contributing factor is employers

7:12

in my opinion, aren't as family,

7:17

the culture isn't as family

7:17

oriented as as it used to be,

7:21

like, when my dad was, was

7:21

working and taking and we were

7:24

all taken care of his dad, my

7:24

grandfather, his boss would say,

7:28

you know, take whatever time you

7:28

need, you know, family comes

7:31

first. You don't hear that

7:31

anymore. Oh, yeah. So and you

7:35

know, and your colleagues are

7:35

like, well, if you're going to

7:37

be gone for another two weeks,

7:37

because you have to fly to

7:40

Arizona, because Dad fell again,

7:40

you know, even colleagues are

7:43

saying, Look, you know, I I

7:43

can't keep carrying your weight

7:47

for you when you're gone. So

7:47

those are, those are some those

7:52

are, in my opinion, just the the

7:52

shift that I've seen, and then

7:57

just, you know, people,

7:57

employees only get two to four

8:00

weeks of vacation, and they're

8:00

certainly not going to spend

8:04

every PTO day checking in on

8:04

aging parents, and then you've

8:08

got blended families or you

8:08

know, dad lives in Tucson, but

8:11

mom lives in Fort Myers. And you

8:11

know, there's only so many

8:13

vacation days that you get.

8:15

And it's

8:15

interesting that because

8:17

everything that you've said, has

8:17

come up in a lot of the episodes

8:22

that we've talked to people who

8:22

have acted as primary caregivers

8:26

who have since transitioned to

8:26

a, you know, whether it's

8:29

building their own company or

8:29

helping other families or

8:32

managing a support group online.

8:32

That's exactly what they talk

8:37

about. It's about putting their

8:37

life on hold. It's about moving

8:40

across the country. It's about

8:40

having to essentially change the

8:46

direction of their lives to be

8:46

closer to an assisted living

8:50

facility that their parents are

8:50

living in. And you know, it, it

8:55

always brings up in my mind how

8:55

many families aren't doing that.

8:59

And they have to rely on the

8:59

long term care system, which is,

9:02

generally compartmentalize. So,

9:02

you know, whether you're a

9:08

spouse or a family member,

9:08

child, whatever it might be, and

9:14

you're caring for an individual

9:14

day in and day out, you know,

9:19

burnout is obviously going to

9:19

happen and today's episode

9:23

revolves heavily around the

9:23

concept of compassion fatigue,

9:26

or the burnout that caregivers

9:26

experience due to the chronic

9:29

self sacrifice. How does this

9:29

normally manifest for caregivers

9:35

and what should we be on the

9:35

lookout for?

9:37

Sure. So let's

9:37

let's back up a bit first, so

9:42

because I do a lot of speaking,

9:42

I just did one. I did three of

9:44

them yesterday, there were live

9:44

webinars, and there were total

9:48

for the day, probably 450

9:48

people. Oh, total webinars,

9:53

right. And so the converted into

9:53

podcasts, but anyway, I always

9:58

ask how many of you are family

9:58

care? givers right out of the

10:01

great out of the gate. And you

10:01

might get like a few hands like,

10:03

Oh yeah, I'm a kid. But then as

10:03

I talked about what a caregiver

10:06

actually is, and then I ask

10:06

again, then like all these hands

10:10

like shoot up, and they're like,

10:10

oh my gosh, I am doing all of

10:13

that. That's a caregiver. I just

10:13

thought I was helping. So, so

10:16

let's talk about what a family

10:16

caregiver is. And I'm sure that

10:19

your listeners will be like, oh,

10:19

gosh, that is me. And I need to

10:22

I need to figure out what a plan

10:22

looks like so that I don't get

10:25

burned out because it is

10:25

preventable. caregiver burnout

10:28

is preventable, if we have

10:28

enough supports in place if

10:32

we're educated about what the

10:32

disease is that our loved one

10:34

has. And we have an actual aging

10:34

plan, which is what we do at

10:37

care, right? We do aging

10:37

planning. So caregiving is tasks

10:42

that you do and time that you're

10:42

spending on your aging loved one

10:47

or the person that you're the

10:47

care recipient is not always

10:50

aging loved ones, because we do

10:50

special needs planning as well.

10:53

But it's tasks that you're

10:53

spending time unpaid doing. So

10:58

it could be you know, going to

10:58

go pick up the mail, because

11:02

mom's driveway is too steep, and

11:02

you don't want her to tumble

11:05

down, right? So it could be

11:05

going to pick up the mail, it

11:07

could be Well, mom needs

11:07

groceries, so I have to go to

11:10

the store. So I might as well

11:10

pick hers up, could be doing

11:13

laundry housekeeping, setting up

11:13

medications, coordinating

11:17

doctor's appointments and

11:17

therapy appointments, taking

11:20

time off work to drive them to

11:20

their doctor's appointments,

11:24

because you can't trust that mom

11:24

is going to relay the messages

11:27

back to you about what's what

11:27

transpired during that doctor's

11:31

appointment. It's calling

11:31

insurance companies, it's going

11:34

to the bank, it's paying bills,

11:34

it's talking to the financial

11:38

planner, it's talking to the

11:38

estate attorney, it's signing

11:42

documents, it's money, managing

11:42

their money, making sure that

11:46

their bills are getting paid to

11:46

all of those things. That sounds

11:49

like a full time job. And then

11:49

you got Oh, now mom needs help

11:54

in the bathroom and bathing and

11:54

dressing, grooming and not Mom's

11:57

got dementia. So if I'm not

11:57

there in the afternoon, she's

12:00

likely to wander out, you know,

12:00

so. So it's all of those things.

12:05

And we talk about or I talk

12:05

about the caregiver snowball. It

12:09

sounds like we as kids, we just

12:09

think we're all these heroes,

12:13

right? Like, we're like, yeah,

12:13

we got this we can sure we, we

12:16

can do this. And it starts out

12:16

feeling manageable. And then in

12:20

time, whatever happens, but in

12:20

time dementia progresses, Dad

12:24

has another fall, they move in

12:24

with you and you don't like

12:28

their cat. And you're like, oh

12:28

my gosh, what have we done? I'm

12:32

so not joking about that. Is

12:32

that a big relationship breaker?

12:39

Pets in general, though,

12:42

relationship

12:42

breaker and I have

12:45

I have had

12:45

certain individuals who are in

12:49

complete crisis. I mean, they

12:49

know they are living in unsafe

12:54

conditions. And we have a no

12:54

pets policy. Because a lot of

12:59

times it'll just end up the

12:59

caregiver will end up spending

13:03

more time taking care of the pet

13:03

than it is than the individual

13:05

at times, of course, and people

13:05

will forego the service. So they

13:10

remain in their environment

13:10

because of their pet. And it's I

13:14

mean, you know, I don't I don't

13:14

know every how they think I'm

13:18

not inside their minds. And you

13:18

know, maybe it's they consider

13:21

it like children, so I totally

13:21

get it. And cats cats are a big

13:25

one.

13:26

A big one only

13:26

because they climb on counters

13:28

and you know, anyway, so yeah,

13:28

pets can be a challenge. But But

13:33

anyway, so caregiving starts out

13:33

feeling manageable until it's

13:36

not until you're like, oh my

13:36

gosh, now I'm spending 10 hours

13:40

a week now I'm spending 20 hours

13:40

a week and now I'm spending, you

13:43

know, all this money out of

13:43

pocket. So for example, my care

13:47

right clients, I asked them, How

13:47

much money are you spending out

13:50

of pocket just because again,

13:50

families are darting across the

13:53

country every time mom falls. So

13:53

it's not like they're always

13:56

just right down the block from

13:56

mom. And so the typical my

14:01

typical family is spending

14:01

$15,000 In airfare alone the

14:06

year prior to engaging with us

14:06

on a comprehensive aging plan.

14:11

Because when dad lives in

14:11

Arizona and you live in New

14:14

York, and he falls again and you

14:14

get that crisis call airfares,

14:18

not $69 on a legion, it's like

14:18

$1,000 at a pop. And they tend

14:24

to you know, sometimes they tend

14:24

to get a one way ticket because

14:27

they're like, what, I don't know

14:27

how long I'm going to be gone

14:30

this time. You know, and then

14:30

spouses you know, their spouse

14:33

is like look, the first couple

14:33

three grand was when was one

14:37

thing but now it's like 1015

14:37

grand a year like this isn't

14:41

sustainable for us. So we talked

14:41

about the financial tool of

14:43

family caregiving as well. And

14:43

so that's why Unfortunately, by

14:47

the time families come to us to

14:47

talk about an aging plan, their

14:53

relationships are really burned

14:53

out at home because the spouse

14:57

is like you're not even

14:57

emotionally present for Are us

15:00

in your own family anymore. And

15:00

you're like, I love your

15:03

parents, but you got to figure

15:03

this stuff out. They're stressed

15:06

out because of their employers

15:06

and colleagues saying, Look, you

15:09

know, we got to have you here,

15:09

dude. Like, if you're not

15:13

selling and meeting your sales

15:13

quota, you're not going to have

15:16

a job. So there's all this like

15:16

other stressors in that trickle,

15:21

because of family caregiving and

15:21

family caregiving can derail

15:25

your your relationships, your

15:25

emotional well being your

15:28

physical well being your safety,

15:28

and your finances all across the

15:33

board. And so we want to, we

15:33

want to educate family

15:37

caregivers, that aging and

15:37

caregiving can be a positive

15:41

experience, when you have an

15:41

aging plan, you know, we, we

15:45

spend our whole life planning

15:45

for all these other things, you

15:49

know, oh, I want to go to this

15:49

college. So I need to do these

15:53

classes, get these grades, do

15:53

this type of volunteer work to

15:56

be able to get into this

15:56

college, oh, I want to do this

15:59

as a, as an occupation. This is

15:59

the type of college I need to go

16:03

to. And this is what I need to

16:03

do that this is the other

16:05

training and certificate. If you

16:05

want to go on vacations, people

16:08

spend 20 hours just planning the

16:08

vacation. But so why why

16:13

wouldn't we leave our most

16:13

dependent, vulnerable

16:16

population? Why would we be

16:16

willy nilly about that when they

16:20

are when they become so at the

16:20

mercy of health care workers and

16:24

family to take care of them.

16:24

That's That's why families fail,

16:29

and they fall through the

16:29

cracks. Because, you know, the

16:31

health care system will say, Oh,

16:31

you have Parkinson's, good luck

16:36

to you. And then that's that's

16:36

kind of it, you know, and that's

16:38

why that's why that's why curate

16:38

fills the gap, you know, to go I

16:43

working with a new fan, you

16:43

know, a new family. And, you

16:47

know, their mom had Parkinson's

16:47

for five years, she's had that

16:50

diagnosis for five years. And

16:50

when the daughter called me,

16:53

because she's like, had mumps

16:53

falling all the time. And she

16:56

was I'm just, I just can't do

16:56

this anymore. You know, I hurt

16:59

my back trying to pick her up

16:59

the last time and I said, Well,

17:03

you know, so I laid out what

17:03

Parkinson's really means. And

17:07

falls are a hallmark of that

17:07

disease. And it can be a

17:10

dementing illness. So I walked

17:10

her through well as your mom,

17:13

you know, I have a memory

17:13

impairment checklist. And she's

17:15

like, Yeah, she's doing all that

17:15

stuff. And five years of that

17:19

diagnosis in the family, you

17:19

know, family had no idea. So

17:23

shame on the healthcare industry

17:23

for allowing these families to

17:26

fall through the cracks. But

17:26

that's why we talk about with

17:29

the aging plan, we have to

17:29

educate our families that we're

17:32

working with, because they don't

17:32

know or they'll say, if dad's

17:36

dementia progresses, so that

17:36

tells me that no one's done

17:41

their homework, right. And so

17:41

that's why with our clients,

17:45

it's so much almost curriculum

17:45

based because they're coming to

17:50

us so naive and misinformed.

17:50

They'll say Medicare and

17:54

Medicaid in the same sentence as

17:54

if it's the same program.

17:57

They'll say, if dad's dementia

17:57

progresses, they'll say assisted

18:01

living and nursing home in the

18:01

same sentence as if it's the

18:04

same type of care, and it's not

18:04

at all. So we have to really

18:08

start at Ground Zero and just

18:08

really educate them about aging

18:12

and dementia and caregiving.

18:14

Well, and to

18:14

prevent that burnout, the best

18:17

solution, in your opinion, is to

18:17

have an aging plan, and to start

18:22

doing education and research. So

18:22

as we're talking, it's bringing

18:27

up a few things to mind, because

18:27

from the healthcare industry

18:31

perspective, they're not doing a

18:31

good job of educating

18:34

individuals. But more

18:34

importantly, when you're talking

18:38

about preparation, whether it's

18:38

college or a career, how many

18:41

people prepare for retirement,

18:41

and estate planners, and

18:47

retirement experts. I just had a

18:47

conversation last week with

18:51

somebody who's a very prominent

18:51

real estate planning in our

18:54

community. And he doesn't even

18:54

recognize the necessity for

19:00

having a conversation for long

19:00

term care nor preparing for it

19:03

and his rebuttal. And I want to

19:03

hear what you have to say about

19:06

this is that they don't need a

19:06

state planning, because they

19:11

have the financial means to be

19:11

able to afford long term care

19:15

and they'll be just fine. I know. I was like, Oh, okay.

19:22

And his client base is getting

19:30

older and older. He may not be

19:30

he may not have you know, they

19:33

may be in their late 50s, early

19:33

60s. They're not quite there

19:37

where they need this, this this

19:37

hands on and wraparound

19:40

services. But when you talk to

19:40

people you say 92% of your

19:45

individuals come to you in

19:45

crisis, which means that they've

19:47

spent a substantial amount of

19:47

money and they've also reached

19:51

the end of their rope. They may

19:51

very well be at that burnout

19:54

stage. They are at that burnout

19:54

stage and when you see all of

19:58

the people that are supposed to

19:58

help helped them along the way,

20:01

sort of dropped the ball over

20:01

and over and over again. I mean,

20:05

how, specifically speaking to

20:05

estate planner and retirement

20:09

experts, I'm curious your

20:09

thoughts as to why they don't

20:12

have a more thoughtful

20:12

conversation about planning for

20:14

long term care.

20:15

So that is that

20:15

is an entirely other podcasts

20:19

because I have a whole lot of

20:19

stuff I have to say about that.

20:21

But I'll just give you a

20:21

breakdown in a couple of things.

20:24

Okay. All right, so. So I truly

20:24

believe that if we want to be

20:31

successful in life for anything,

20:31

we have to put a plan together,

20:36

how you can't be willy nilly

20:36

about everything in life.

20:40

There's some people who skate

20:40

through life doing that. And

20:42

that's cool. If it works out for

20:42

you, but usually does not. When

20:47

we're talking about because I

20:47

built a whole nother company, I

20:50

have care, right. But I also

20:50

have planned for life because of

20:54

the financial planning industry,

20:54

ignoring the needs of their

20:59

clients not addressing

20:59

caregiving and the impact of

21:02

caregiving on the financial

21:02

portfolio and assets under

21:05

management, not using that

21:05

collaborative approach and

21:09

referring them to attorneys to

21:09

make sure that they have their

21:12

living wills, power of attorney,

21:12

all that stuff buttoned up,

21:14

because all of those things

21:14

litigation and, you know,

21:18

premature hospitalizations all

21:18

affect the premature facility

21:24

placement all impacts negatively

21:24

the assets under management

21:27

portfolio, elder planning

21:27

attorneys, if they fall into

21:31

that same clump, you know, of

21:31

every I just can't believe that

21:36

an elder law attorney doesn't

21:36

see the value in proactive

21:39

planning. And here's because

21:39

when we say estate, estate

21:43

planning, we're talking to

21:43

living wills and power of

21:45

attorney and the HIPAA documents

21:45

are included in that, right.

21:48

We're not just talking to trust

21:48

and stuff like that. So just so

21:51

that your your listeners are

21:51

educated on what that means. So,

21:56

so when we're talking about a

21:56

family who doesn't have, let me

21:59

give you an example. Recently, I

21:59

worked with a family that I

22:04

talked to them about seven

22:04

months ago for their 30 minute

22:06

consult to see if they wanted to

22:06

work together to put a plan in

22:09

place. I said you're already in

22:09

crisis. They had their mom on

22:12

Zoom. She's in her 80s She

22:12

looked exhausted are ready.

22:17

She's been taking care of the

22:17

dad with dementia. He's

22:20

wandering, he's got his days and

22:20

nights mixed up all that kind of

22:22

stuff. And I'm like, we have to

22:22

safeguard your mom, because we

22:25

know that the primary caregiver

22:25

over age 60 has a 65% mortality

22:29

rate. Fast forward seven months,

22:29

it didn't want to engage in

22:33

services because it costs money.

22:33

There's like, pay now or pay

22:36

later. So they call him on a

22:36

Saturday morning at 7am. And

22:39

here's where this is important.

22:39

Because no one calls me at 7am

22:43

on a Saturday with good news. So

22:43

So what happened is the four

22:49

kids live in four different

22:49

states parents live in a totally

22:52

different state. And so the kids

22:52

are like, hey, you know, I tried

22:57

to get a hold of mom all week.

22:57

Have you gotten a hold of her?

22:59

No, no, no. So the closest

22:59

daughter lives the six hour

23:02

drive away. So she hops in the

23:02

car and drives and lo and

23:06

behold, she knocks on the door

23:06

of mom and dad's house. Dad

23:10

opens the door. He doesn't

23:10

recognize her because he's that

23:13

progressed with dementia. And

23:13

she's like, Oh, my gosh, what is

23:17

going on? So first of all, she's

23:17

hit with dad doesn't recognize

23:20

me, you know? Because she's

23:20

like, Oh, when did that start

23:23

happening? And she looks around

23:23

the places trash BM everywhere

23:28

all over the furniture. Mom is

23:28

dead on the kitchen floor. Oh,

23:32

God. The dad is too demented to

23:32

call 911. He doesn't know how to

23:37

use the phone. Mom was the

23:37

primary caregiver. She made sure

23:40

he ate properly had his meds was

23:40

bathed dressed groom toileted,

23:45

clean. mom's dead on the kitchen

23:45

floor for a period of time,

23:50

right? And so this daughter

23:50

who's like, first she gets hit

23:53

by dad not understood not

23:53

knowing who she is the place is

23:56

trashed. mom's dead on the

23:56

kitchen floor. So here's, here's

24:00

why estate planning is

24:00

important. Because then of

24:03

course, now they see the value

24:03

of working with us, right. But

24:06

now we're doing crisis planning,

24:06

which is different rates.

24:10

Because now it's also Saturday.

24:10

And so here's why estate

24:15

planning is important. So I'm

24:15

asking them and of course, this

24:18

is why I tried to get families

24:18

to plan ahead because then we

24:21

have the luxury of time and

24:21

emotions aren't so heavy. So now

24:25

we're working now in working

24:25

with this family. And I'm like,

24:28

Okay, what because dad obviously

24:28

can't stay home by himself. Does

24:32

he have a living will a power of

24:32

attorney and HIPAA documents?

24:36

No, I can't I don't know where

24:36

any of that stuff is. We've

24:38

never talked about this kind of

24:38

stuff. So obviously dad is not

24:42

decisional so now they have in

24:42

their state. The attorney quoted

24:47

on it was gonna be like 18,000

24:47

to get emergency guardianship.

24:50

Why? Because they didn't have

24:50

their estate documents in order.

24:54

And I'm like, Okay, who are your

24:54

parents financial planner? I

24:57

don't know. We've never met this

24:57

person. We've never Talk to

25:00

them. We don't know where their

25:00

accounts are because mom and dad

25:03

took care of all of that, or mom

25:03

took care of all of that. And so

25:07

as the daughter is in the house

25:07

and the you know, waiting for

25:10

the funeral home to the

25:10

mortician to come get mom and

25:13

all that kind of stuff, she's

25:13

looking around, and there's like

25:15

stacks of mail piled up, because

25:15

mom was so overwhelmed with

25:20

taking care of dad, she's

25:20

exhausted. There's only so much

25:24

energy that we have, it's a

25:24

finite amount when you're,

25:27

especially when you're at ease.

25:27

And so then the daughter's like,

25:30

Oh, my God, we had no idea that

25:30

she wasn't taking care of the

25:33

bills and wasn't taking care of

25:33

any of this type of stuff. So so

25:37

that's a long story of what a

25:37

typical crisis can be. But now

25:41

the family's got our crisis

25:41

rates that they're paying to put

25:45

to fix this problem. And now

25:45

they've got the teen $18,000

25:51

Emergency guardianship paperwork

25:51

to get done and the fee that

25:55

they're like, how are we supposed to pay for that? They've got the cost of the

25:58

funeral, because parents didn't

26:00

plan ahead with a funeral

26:00

either. So that, you know,

26:03

they're they're looking at 3540

26:03

grand, just like within within a

26:07

few days, right. And so that's

26:07

why it's so important.

26:11

But to solve

26:11

the problems of having so many

26:16

different siblings, and kids

26:16

living in so many different

26:20

states, and being confronted

26:20

with this with with the, with

26:24

aging, essentially, of your

26:24

parents. The best solution is to

26:29

create that aging plan. And but

26:29

more importantly, like, when

26:34

should they start creating when

26:34

their parents are 5060? When is

26:41

it when is it too early? When is

26:41

it too late? You know, when

26:44

should they? Okay?

26:45

It's never too

26:45

early, in my opinion. And this

26:48

is why because every single

26:48

family needs an aging plan. I'm

26:53

50 years old, but when I was 40

26:53

I had because I'm also an

26:56

international speaker on all of

26:56

these types of topics. Right? So

27:00

I just made it through Shenzhen

27:00

and Beijing, China. God, I don't

27:04

know how I made it through but

27:04

I've managed Thank god. Yeah,

27:08

I'm I that that is on Anneliese

27:08

list of accomplishments and, and

27:14

but then I come back to

27:14

Sheboygan, Wisconsin because I

27:17

had built care right in in

27:17

Milwaukee. And I had a cluster

27:20

of clients in Sheboygan. So I

27:20

was just going to have a

27:23

Sheboygan week. Long story

27:23

short, I'm walking, I'm walking

27:27

up the street on the main street

27:27

in Sheboygan, I encounter this

27:30

little cute little older guy,

27:30

he's in his 80s. I can't help

27:34

myself, I just I love elderly

27:34

people. They're my people. So

27:37

I'm like, Hi, how are you? And I

27:37

know when you ask an elderly

27:40

person that you're gonna get a

27:40

whole laundry list of their

27:43

diagnoses and how constipated

27:43

they are. And I'm cool with

27:46

that, because I know my people.

27:46

So he's telling me all about his

27:50

health issues, and we get to the

27:50

intersection and we get the

27:53

little green light that says we

27:53

can go so we walk across, he's

27:56

still telling me about his heart

27:56

stents that he had put in six

27:59

months prior. All of a sudden he

27:59

yells watch out the next thing I

28:03

know I'm getting up off the

28:03

street. I at the time had a

28:07

yellow leather backpack as a

28:07

person, I carry way too much

28:10

crap with me. But it saved my

28:10

life because the school bus

28:13

driver was distracted by the

28:13

kids on the bus. And instead of

28:17

looking through the windshield

28:17

at the four corners stop, she

28:20

was looking up in that mirror

28:20

because there were kids fighting

28:23

and so she blew through the four

28:23

corners stop. She did not apply

28:26

the brakes until she saw my face

28:26

break the headlight of the

28:30

school bus. I have this team

28:30

feet and got up. I'm a farm kid.

28:36

I'm 510 Thank God that you know,

28:36

I'm not a frail little lily

28:41

flower

28:42

by a school bus.

28:43

Yeah, the the

28:43

bus, the headlight. That's what

28:46

all these scars are right here.

28:46

So anyway, this she was

28:50

distracted. And so my point in

28:50

saying, how, when is the time

28:55

the time is now because I

28:55

certainly did not wake up three

28:58

days after my 40th birthday on

28:58

May 3 of 2012. thinking, Hmm, I

29:02

think I'm gonna get hit by a

29:02

school bus and have my whole

29:05

business derailed. My health

29:05

derailed, and honestly, my

29:08

finances derailed because not

29:08

working for a year kind of

29:11

sucked. Yeah. And so So my point

29:11

is life, I've said this twice

29:16

now on this podcast, life has

29:16

its own agenda. We have to be

29:20

prepared, we have to get through

29:20

that layer of denial of

29:23

nothing's going to happen to me.

29:23

Nothing's going to happen to my

29:26

parents or our age. Our elderly

29:26

parents have to get through that

29:30

denial and say and stop saying,

29:30

Well, of course I'm going to die

29:34

at home. And we don't need to

29:34

talk about any of this kind of

29:36

stuff, because none of that's

29:36

going to happen to me. But yet

29:39

1000s of people had major

29:39

strokes last Thursday, and they

29:43

didn't wake up thinking, Oh, I'm

29:43

going to have a devastating

29:45

stroke that's going to land me

29:45

in a nursing home at 16 grand a

29:48

month. Now do that,

29:50

you know, so

29:50

as I'm doing this presentation,

29:53

and I do it often, and I do it

29:53

to a wide array of audiences and

29:58

it's primarily around have long

29:58

term care strategies and estate

30:02

planning to try and avoid having

30:02

to essentially divest all your

30:07

generational wealth to qualify

30:07

for Medicaid. And I don't ever

30:12

paint a rosy picture, I explain

30:12

the increase in demand as people

30:18

start to age, I try to lay out

30:18

as many statistics about people

30:22

who are retiring, you know, only

30:22

60 to 70% of them are going to

30:26

retire on Social Security income

30:26

alone. And, you know, I try to

30:30

make it as bleak as possible to

30:30

try to get people into action.

30:34

So I have a friend of mine, this

30:34

was in the same meeting where

30:37

the financial planner was

30:37

talking friend of mine, good

30:40

friend. He, you know, is very

30:40

fiscally responsible works for a

30:46

bank. He's in his late 30s,

30:46

early 40s. His dad's in his 60s.

30:53

And, and he's and I could tell

30:53

like, the blood is leaving his

30:58

face as he's taught as we're

30:58

talking. And he says, I'm going

31:02

to go and call my dad right now

31:02

and tell him that we need to

31:06

start working on these things.

31:06

And then within two hours, he

31:10

texts me and he says, Hey, I

31:10

talked to my dad. And they said,

31:14

they're going to self fund.

31:14

That's all he said. So after

31:19

this, after this episode is out,

31:19

I'm gonna send it to him so that

31:23

he so that he understands that

31:23

it's a lot more than just yeah,

31:26

sorry, son. I'm gonna sell fund

31:26

Have a nice day. Yeah. And yeah,

31:30

people don't understand until it's too

31:32

late. They don't

31:32

understand until it's too late.

31:34

And I just want to say to the

31:34

state attorney thing is like,

31:39

really kind of,

31:40

that's okay, I know I hit a hot button. I'm good with it.

31:43

thorn in my

31:43

side. Right, because, because I

31:47

have spent, I've been in the

31:47

long term care space working

31:51

with families and seniors and

31:51

very sick, frail people for 30,

31:54

over 30 years, because I was a

31:54

candy striper in nursing homes.

31:58

I mean, I literally lived in

31:58

nursing homes for the bulk of my

32:01

life working, working in them

32:01

and volunteering in them. So I

32:07

have spent plenty of time in

32:07

nursing homes and ICU units to

32:11

know what quality of life means

32:11

to me. Now, that is such a

32:14

personal, like, when you think

32:14

about quality of life, what does

32:17

that really mean. And I had to

32:17

rethink it when COVID hit two

32:20

because I have like two pages of

32:20

an addendum in my health care

32:24

power of attorney documents

32:24

because in case I can't ever

32:28

communicate because I I've

32:28

worked with I work with dementia

32:31

patients, traumatic brain

32:31

injury, people, they can't

32:34

communicate, they went from day

32:34

one day being able to

32:37

communicate to you know, a

32:37

motorcycle accident with a

32:40

traumatic brain injury to and

32:40

not being able to communicate at

32:43

all. So like I have two pages of

32:43

an addendum of instructions for

32:47

my healthcare power of attorney

32:47

that I didn't have walked

32:49

through with my brother and my

32:49

sister because I don't have

32:52

kids, they're, they're my my

32:52

siblings or my decision makers.

32:57

But I don't want feedings, I

32:57

don't want a feeding tube, I

33:00

don't want to be poked and

33:00

prodded at all. And so when I

33:03

had my bus accident I carry

33:03

because I do crisis, I have like

33:06

my own trauma from my families

33:06

who choose not to plan ahead. So

33:10

I carry my Living Will my power

33:10

of attorney and my HIPAA

33:13

document because I travel a lot.

33:13

And God forbid something

33:17

happened to me, like I did not

33:17

wake up that morning thinking

33:20

I'm gonna get hit by a school

33:20

bus. But thank God, I carry

33:23

those documents with me, in my

33:23

bag, in my purse and in my car,

33:28

because I don't want to be one

33:28

of those people that ends up

33:31

with a feeding tube and a trach

33:31

and then relying on an $11 an

33:35

hour employee to suction me

33:35

because I can't suction myself

33:38

and then drown in my own saliva.

33:38

Yep. You talk about painting an

33:43

ugly picture? Oh, yeah, that's

33:43

real. That's,

33:47

and it's an

33:47

every single state all 50 and

33:51

the territories.

33:52

And so for oh my

33:52

gosh, this attorney is like,

33:56

because here's the thing, if you

33:56

don't have these documents in

34:00

order, and God forbid, you know,

34:00

your dad has a stroke. And now

34:05

it's like, okay, who's going to

34:05

make sure the bills who's going

34:07

to take care of the financial

34:07

stuff, right, like, who's going

34:10

to make sure that the bills

34:10

still get paid, because that

34:12

generation doesn't do a lot of

34:12

auto pay, they still cut checks.

34:16

And so it's not like you can be

34:16

in Ohio and dad and mom in

34:20

California and like manage their

34:20

unless you happen to have their

34:24

checkbook, you know, you got to

34:24

like shift everything online and

34:27

stuff, you know, so. So my point

34:27

is that too many times because I

34:31

work with families in crisis,

34:31

and they most of them don't have

34:34

any of this stuff in place. And

34:34

so they're like, Well, how am I

34:37

supposed to do the financial,

34:37

the financial power of attorney,

34:41

when I don't have any idea who

34:41

the financial planner is, I

34:44

don't know who the attorney is,

34:44

I don't know where their

34:46

accounts I don't have any of

34:46

their passwords. I don't know

34:49

what they have for long term

34:49

care insurance, if they have

34:51

insurance and all if they have

34:51

multiple properties, because a

34:54

lot of my clients have multiple

34:54

properties across the country.

34:57

They're like I have no idea

34:57

where these properties are. If

34:59

they're for landlords, they have

34:59

no idea who to contact for

35:03

property management. You know,

35:03

so if you if you want your kids,

35:07

I don't know, the audience here.

35:07

But if if you want your kids to

35:11

be successful as a power of

35:11

attorney, you have to give them

35:14

the information they need to be

35:14

successful. Same thing from a

35:17

healthcare perspective, if

35:17

you've named a health care power

35:21

of attorney, you have to sit

35:21

them down and say, these are

35:24

what my wishes are, this is what

35:24

I feel strongly about. Like,

35:27

that's why I have a two page

35:27

addendum of instructions,

35:31

specifically for my power of

35:31

attorney. And we go over this

35:34

twice a year, because I travel a

35:34

lot. And that way, and I'm doing

35:39

them a favor. And they know that

35:39

because the worst thing families

35:42

do, like families make tons of

35:42

mistakes, because they don't

35:44

know what they don't know. And

35:44

so the worst thing to do is not

35:48

have documented at all in place

35:48

number to have them in place,

35:53

but then never tell your family

35:53

that you have them and what your

35:56

wishes are and not giving them a

35:56

copy of the power of attorney

36:00

because otherwise they're they

36:00

have to have it in their

36:02

fingertips because they're going

36:02

to have to produce it.

36:04

Let's say

36:04

that a family did all the right

36:09

things. They got all the they

36:09

have the aging plan in place.

36:13

They have a they have they've

36:13

saved for retirement, they have

36:17

you know, the income to be able

36:17

to support themselves and long

36:20

term care. Let's say they even

36:20

got long term care insurance.

36:24

Okay, which is only 7% of the of

36:24

the US population,

36:27

that would be a unicorn.

36:28

Yeah,

36:28

exactly. Right. Let's say they

36:30

got it all. At the end of the

36:30

day, though, and I'd love to

36:34

hear your thoughts on this. I

36:34

mean, obviously, there is a

36:37

there is a level of morality

36:37

attached to this question. But

36:41

I'm just curious, how do you set

36:41

the correct boundaries. So

36:47

caregiving is a full time job,

36:47

whether you have a plan or not,

36:50

you're still going to be

36:50

engaged, let's just say it's a

36:52

part time job, it's 20 hours a

36:52

week, that's still 20 hours a

36:55

week, most people in America

36:55

have to work 40, even 60 hours a

37:00

week, you also have a family

37:00

that you have to attend to? How

37:04

do you set those boundaries in

37:04

caregiving without feeling

37:08

guilty?

37:10

That's a loaded

37:10

question. So when we work with

37:13

our clients, you know, because

37:13

we were facilitating the family

37:15

meeting and say, what's working?

37:15

Well, what's not working well,

37:18

in our clients, the whole

37:18

family, right? So everybody gets

37:21

a everybody gets a say, because

37:21

it's affecting everybody in one

37:24

way or another. Even the brother

37:24

who's not involved, it's still

37:27

affecting him in a one in one

37:27

way or another, because it's

37:30

going to affect the whole

37:30

family. So so when we look at

37:36

when we work with our clients,

37:36

we're like, Well, what do you

37:38

want to take off your caregiver

37:38

plate? Because I find out from

37:41

each person who's doing what,

37:41

like, what is your role? who's

37:44

doing what, how much time are

37:44

you spending, because families

37:47

aren't talking about this. And

37:47

so then the siblings are like,

37:50

Oh, daughter, Sally, you're

37:50

always over exaggerating how

37:54

much time mom takes well, so you

37:54

know what, Fine, keep a time

37:58

tracker, keep a log. And that

37:58

way, you can say, Well, I had to

38:03

take four days off work this

38:03

month, because mom had four

38:05

doctor's appointments and that.

38:05

And so so we need to look at,

38:09

okay, if there's funds there, if

38:09

there's resources there to pay

38:13

for outside help, we need to

38:13

take off the most pressing

38:18

difficult, frustrating

38:18

resentment causing tasks. So

38:24

care coordination is an example

38:24

because you have to make all

38:27

these calls to doctor's

38:27

appointments and the VA during

38:31

normal business hours. Well, if

38:31

you work a nine to five job,

38:34

which there really isn't

38:34

anything like that anymore, it's

38:36

like a 12 hour job. No, can't

38:36

just step away for two hours

38:41

because you're on hold with the

38:41

VA for an hour and a half trying

38:45

to get a hold of somebody. Or if

38:45

you have to, you know, the

38:48

doctor change mom's prescription

38:48

and you have to be on the hold

38:51

was CVS for an hour, you just

38:51

can't do that. So and keep your

38:55

job and keep your sanity and

38:55

keep your relationships. And so

38:58

that's why we're like what do you want to take off your caregiver plate because then we

39:00

can do your care coordination,

39:03

because we're virtual. So we do

39:03

virtual care coordination for

39:06

families all across the country.

39:06

Because that way, you need to

39:10

think about how do you want to

39:10

spend your energy because that

39:13

is a finite asset that we have.

39:13

How do you want to spend your

39:17

time and how you want that

39:17

relationship to be these last

39:21

years with your elderly parents?

39:21

Would you rather be resentful

39:24

and angry because you have to

39:24

take another day off work or

39:27

miss another vacation? Or have

39:27

your husband on your budget

39:30

because he's like, Oh, we can't

39:30

travel to Rome because your dad

39:34

is having surgery you know? So

39:34

so we outsource that we're like

39:39

okay, you've got money to pay

39:39

for this is this is how much is

39:42

going to be a homecare companion

39:42

in your area is going to cost

39:45

this much a Geriatric Care

39:45

Manager, you know, our advocacy

39:48

services to be the project

39:48

manager basically so that you

39:52

can just be the son and the

39:52

daughter but yeah, it's gonna

39:54

cost money. So

39:57

when it comes

39:57

to self care, though, you know

39:59

at As we're as we're pivoting

39:59

through this conversation, I

40:02

want to hear more about kind of

40:02

what you think self care means

40:07

to a caregiver. And more

40:07

importantly, maybe some

40:10

actionable tips that caregivers

40:10

can incorporate into their

40:13

routine to ensure that they're

40:13

taking care of their own needs.

40:17

I actually asked

40:17

because we can't be so audacious

40:21

to assume that we think that we

40:21

all know what self care is for

40:26

someone else. That's That's an

40:26

assumption. I know what self

40:32

care is for me. And so self care

40:32

for me is I want time alone. I

40:37

need to recharge, it's reading.

40:37

It's listening to music. It's

40:42

listening to podcasts. So I

40:42

asked each person, what does

40:46

self care mean to you? Because I

40:46

do a caregiver burnout

40:50

assessment with my clients, and

40:50

they are all in the severe

40:54

burden range. So I'm like,

40:54

because they're coming to me and

40:57

Christ, how

40:58

many clients?

40:58

How many clients do you see

41:00

annually? Oh,

41:03

so we usually

41:03

have about 125 clients per month

41:08

on different services that we

41:08

offer amazing across the

41:12

country, and then a whole bunch

41:12

in the UK, because they can't

41:15

just, you know, hop on a plane

41:15

every time dad falls?

41:20

Is it fair to

41:20

assess that you have a fraction

41:24

of the need, in terms of I mean,

41:24

you're seeing without looking

41:28

roughly about 1500 people a

41:28

year, 1500 families a year. And

41:33

think of how many people are out

41:33

there that don't even access

41:38

your services? And they don't

41:38

know about it? They don't know

41:40

about it? Are there other? Are

41:40

there other companies like

41:44

yourself with across the

41:44

country,

41:47

companies that

41:47

do bits and pieces that we do

41:49

have what we do because there's

41:49

companies that do Geriatric Care

41:52

Management, you know, but

41:52

they're not. They're not doing

41:54

aging planning. They're still

41:54

it's still crisis mode. So when

41:58

we'll talk about and then

41:58

there's the, then there's these

42:01

companies that do placement, you

42:01

know, so they just work off of

42:03

commission, you know, they only

42:03

refer people to where they get

42:07

the kickback. And I that's a

42:07

whole nother thing. I'm not

42:09

gonna go into that. But there's

42:09

no planning, there's no Grab and

42:13

Go binder. There's no patient

42:13

advocacy is just a transaction.

42:17

It's a one and done. And if your

42:17

parent runs out of money, and

42:21

they're in that facility that

42:21

they got placed at by the

42:24

placement company, you're on

42:24

your own. And or if that, are

42:28

you, you chose one of the

42:28

companies that the placement

42:30

company referred to you. And

42:30

then you find out oh, my gosh,

42:34

mom's been abused or neglected.

42:34

They've, they're not doing

42:36

anything for her. There's no,

42:36

there's no support there. It's a

42:40

transaction, it's a one and

42:40

done. Or they'll move you or

42:43

parent into a different facility

42:43

so they can get yet another

42:46

kickback. Because that's how

42:46

that all works. It's not client

42:48

focused. It's kickback focused.

42:48

So anyway, I got off on a little

42:55

tight.

42:55

I think I took you down a rabbit hole. Buttons for me.

43:01

Okay, so asked

43:01

me that question again.

43:04

Well, I just I just love to hear your perspective on self care. I know

43:05

that you said it's different for

43:08

everybody else. But I mean, just

43:08

I guess some some simple things

43:15

that that caregivers can strive

43:15

for, to say, Okay, I'm at least

43:19

some caring for myself and a

43:19

general standpoint.

43:21

So in general,

43:21

what seems to be across the

43:24

board. What people are looking

43:24

for, and what they're craving is

43:31

stuff that they haven't had for

43:31

weeks or months. They want time

43:34

alone, they want, they want

43:34

their care recipient to say

43:38

thank you. They want to be able

43:38

to read a book without being

43:45

called Honey, I needed to go the

43:45

bathroom, they just want to be

43:48

able to read a chapter or read a

43:48

book, they want to be able to

43:51

unplug from their phone from dad

43:51

calling at two in the morning,

43:55

because he's added toilet paper

43:55

they want they want that

43:59

boundary and they want to be

43:59

able to schedule a vacation and

44:04

actually have confidence that

44:04

they're going to be able to go

44:07

on that vacation. They want to

44:07

go get their hair done because

44:11

they haven't been able to get

44:11

their hair colored for weeks or

44:15

months. They want to go to the

44:15

salon to get their nails done.

44:18

They, they they want their

44:18

spouse to say Hey, honey, I've

44:24

got you, I've got you. I've got

44:24

instead of you're not performing

44:30

your spousal obligations because

44:30

you don't have energy or you're

44:33

not present or you're always

44:33

looking at the camera to make

44:36

sure your dad didn't fall when

44:36

you should be spending time with

44:39

us. I mean, those are the common

44:39

themes of families that say I

44:44

just I just want some time alone

44:44

or I want somewhere that they

44:47

think you or say you know this

44:47

is noble that you're doing this

44:51

but but there's a fine line

44:51

between being a caregiver and

44:54

getting burned out to when

44:54

you're when you can tell that

44:58

you're emotionally stressed out

44:58

or when your head hits the

45:01

pillow and you should be

45:01

sleeping, and you're like, oh my

45:03

gosh, did I did dad take his

45:03

meds tonight, you know, when you

45:07

have that kind of angst and

45:07

anxiousness about you, that's

45:11

you're heading in the wrong

45:11

direction of being a healthy

45:14

caregiver. When when caregiving

45:14

has derailed your physical

45:19

health, and you're gaining

45:19

weight, you're not sleeping, or

45:22

you want to sleep all the time,

45:22

or you've got blood pressure

45:25

issues, or your diabetes is out

45:25

of control. So when it's

45:29

derailing your emotional health,

45:29

your physical health, your

45:32

finances, because a lot of us

45:32

caregivers are shelling out a

45:36

lot of money in airfare or gas

45:36

checking in on parents or Yeah,

45:42

coming not

45:42

to, not to mention the unpaid

45:46

caregiving thing that's been a

45:48

gap of that, you

45:48

know, and families will say, you

45:51

know, I took early retirement,

45:51

not thinking that how how much

45:55

of this care is going to cost

45:55

because again, families are

45:58

coming to us that care, right?

45:58

thinking, Oh, Medicare is gonna

46:01

pay for everything. Or they

46:01

think that their parent can stay

46:05

home 24/7 until they die on

46:05

Medicaid, and I'm like, Medicaid

46:09

doesn't cover that, you know,

46:11

you know, so

46:11

there's so much education that

46:13

needs to be making

46:14

bad decisions

46:14

off of wrong information. And

46:16

that's why when we do aging

46:16

planning, it's a process because

46:20

we have to educate them so they

46:20

can make smart decisions. And

46:23

that plan is that's great. If

46:23

mom and dad want to age in place

46:26

at home, here's what that's

46:26

going to look like. And here's

46:28

how much that's going to

46:28

potentially cost. But what's the

46:31

plan if aging at home doesn't

46:31

work out? Or it's not feasible

46:34

or safe? We have to do that care

46:34

matrix to so that you understand

46:38

what care options are available

46:38

to you based on what you can

46:41

afford? How long are there

46:41

waiting lists? What are their

46:44

State Surveys, like? We teach

46:44

our clients how to tour these

46:49

different care communities we

46:49

teach our clients, what are the

46:52

differences in levels of care,

46:52

independent living, assisted

46:55

living memory care, secured

46:55

memory care versus alarmed

46:58

memory care, families don't know

46:58

that there's two different kinds

47:01

they don't under they don't know

47:01

what home health is compared to

47:06

companion care. So it's really

47:06

you know, we have to educate

47:09

them and teach them how to do

47:09

those tours of those different

47:12

care communities proactively to

47:12

get yourself on the waiting list

47:16

so that if or when things change

47:16

at home, you're not now at the

47:20

11th hour trying to find

47:20

communities that you can move

47:24

into. That's why I started care

47:24

right in the first place is

47:27

because families weren't

47:27

planning ahead at all. So we

47:30

gotta get everything buttoned up

47:30

if you want to have the best

47:33

aging and caregiving journey

47:33

possible.

47:35

Emily, I want

47:35

to talk about your book, The

47:37

Invisible patient, where you

47:37

talk about the emotional,

47:41

physical and financial toll

47:41

experienced by family

47:45

caregivers. How does this book

47:45

help empower both caregivers and

47:49

their loved ones?

47:51

Yeah, so it's

47:51

actually so when you asked about

47:53

demand, because there aren't

47:53

other companies doing what I'm

47:56

doing. Like I said, there's

47:56

companies doing bits and pieces.

47:58

So my, before my dying day, I

47:58

want to be able to reach these

48:03

millions of families all across

48:03

the world, because it's not just

48:08

the United States based issue.

48:08

It's people all across the

48:11

country are caring for elderly

48:11

parents, and they're getting

48:13

burned out because they don't know what they're getting themselves into. So I've

48:15

literally had 1000s of families

48:19

through the last many years say,

48:19

I just wished that there was

48:22

like a what to do with mom and

48:22

dad as they age kind of guide

48:26

book. So So I wrote one. And so

48:26

it's thicker than what I

48:30

expected or what I it's longer

48:30

than what I always is. And my

48:34

editor was like, we want it to

48:34

be 99 pages or less. I'm like

48:37

Fat chance of that. People need

48:37

to know, but I also wrote it in

48:43

like 40 Well, they edit it and

48:43

put it in like 14 point font

48:47

because I know my population,

48:47

you know, they're they're older.

48:51

So anyway, the it's called the

48:51

invisible patient because

48:55

usually when I'm working with

48:55

clients, I'm the first person

48:58

that they've dealt with it as

48:58

has actually asked, How are you

49:01

holding up because everyone's

49:01

always like, Oh, how's your dad?

49:04

Well, Dad's fine, but it's

49:04

killing me. Right? Yeah, like

49:08

caregiving is killing me. So the

49:08

invisible patient is jam packed

49:12

with scripts on how to

49:12

facilitate your own family

49:15

meeting, how to broach these

49:15

topics with your family, a

49:18

checklist on the your Grab and

49:18

Go binder. You know what we

49:22

have? It's a plug and play

49:22

solution. It's a grab and go

49:24

binder that has all the whole

49:24

checklist of what you should

49:28

have in place accounts,

49:28

passwords, state documents,

49:33

absolutely surance, all that

49:33

kind of stuff. But it's also

49:35

like how to tour care facilities

49:35

and like pages and checklists of

49:40

considerations. What if mom

49:40

needs one level of care and dad

49:43

needs another? What if mom's a

49:43

primary caregiver to dad and

49:45

he's got dementia and mom dies.

49:45

So it's a whole resource guide.

49:49

And it's meant to be read in one

49:49

of two ways, because it's all by

49:53

chapter. So for families that

49:53

are in crisis, they tend to flip

49:57

to the chapter that they need to

49:57

learn about Most, but other

50:02

people read it cover to cover.

50:02

So just so you know, there is

50:05

some redundancy in it because I

50:05

don't know the audience if

50:08

they're going to read cover to

50:08

cover or use it as a training

50:10

manual and just read chapter,

50:10

the chapters that they need to

50:13

know. Plus, I honestly wrote the

50:13

book literally from like

50:16

midnight till four o'clock in

50:16

the morning for weeks on end. So

50:20

I'm sure there's a lot of

50:20

redundancy in there.

50:23

So it's sometimes it's important to drive the point home, you know,

50:25

it

50:27

really is. And

50:27

so my point in writing the book

50:29

was that way there are I can

50:29

offer solutions to families with

50:34

literally any budget and the

50:34

book is 20 bucks, if you don't

50:37

have $20, I can't help you, you

50:37

have to be able to invest in

50:42

your own outcomes. And the thing

50:42

is, the other thing is that,

50:46

like, there's agencies out there

50:46

that you can go to for

50:49

resources, but the reality is

50:49

that it just causes more

50:53

confusion, because you can go

50:53

and pick up brochures and

50:55

flyers, but then what are you

50:55

gonna do with it? And that's the

50:57

problem is there's, there's

50:57

information you can Google but

51:01

it's not going to be your

51:01

specific need.

51:03

And also, you

51:03

know, when you start talking to

51:07

an agency, you're automatically

51:07

going to be spending a lot of

51:11

money without even a plan or a

51:11

general understanding of what to

51:15

expect. I mean, there's no,

51:15

there's really no end in sight.

51:20

And obviously, money is not an

51:20

infinite property, right?

51:23

Eventually, it goes away. And,

51:23

you know, I'll be honest, most

51:29

of the private the private pay

51:29

clients, even in a community,

51:34

such as Cookeville, which is a

51:34

very small town in Tennessee,

51:38

with a population of about the

51:38

county, the entire county has

51:41

only 80,000 people, and it's

51:41

between Nashville and Knoxville,

51:45

most private pay rates are in

51:45

the $30 range now. And it's even

51:51

higher in Metro markets. Because

51:51

if you want a qualified staff

51:57

member that you can rely on,

51:57

you're gonna have to pay them

51:59

pretty well, you know, and, and

51:59

it's, it's fascinating to me.

52:04

How many people just don't know

52:04

what they don't know, don't know

52:10

what they don't know. It is

52:10

fascinating. I have I do have

52:13

three questions. And just real

52:13

quick questions. With with

52:18

relatively short answers you

52:18

cover or you can you can operate

52:21

within all 50 states, and you

52:21

can even operate

52:24

internationally. Right? And your

52:24

opinion, are there any states

52:28

that are actually doing a good

52:28

job? I'm just curious, because I

52:34

mean, you've been you have more

52:34

experience in this and in a much

52:37

more macro standpoint,

52:39

I will say that

52:39

I was more proud of health care

52:46

and long term care before the

52:46

pandemic, pandemic shed the

52:52

light and that it when I got my

52:52

when I got my master's degree in

52:58

2008. My thesis was the changing

52:58

landscape of health care and

53:02

long term care about we have a

53:02

shortage coming of family

53:06

caregivers, because families are

53:06

smaller than they've ever been.

53:09

So less pool for family

53:09

caregiving and less pool for

53:12

professional caregivers, when I

53:12

and I don't want to totally bash

53:16

Florida but when I came from

53:16

Milwaukee, we have some pretty

53:19

decent care options in Milwaukee

53:19

for care facilities. But, but we

53:25

also have some bad ones there

53:25

too. But when I came to Florida,

53:27

I will admit that I feel like I

53:27

came to the Twilight Zone of

53:34

health care because I am. I've

53:34

never been so angry and

53:40

frustrated at care facilities

53:40

and health care agencies that

53:47

should care about their patients

53:47

and making sure that they are

53:50

providing quality, properly

53:50

trained staff,

53:54

we always

53:54

like to end the show with a call

53:56

to action. After 30 years in the

53:56

industry, what's your best

54:01

advice for listeners on how to

54:01

have a fulfilling and happy life

54:05

as a caregiver?

54:07

Oh,

54:07

communication. I would say

54:11

communicate and I would say

54:11

communicate with your family and

54:19

say hey, we're having struggles

54:19

here we need we need to work as

54:23

a team. So I would because if

54:23

you communicate properly and

54:27

effectively then you can work as

54:27

a team as a family. But you have

54:32

to do it ahead of time you have

54:32

to do it before family

54:34

resentment happens and crisis

54:34

happens with families you have

54:39

to you have to start

54:39

communicating earlier so sooner

54:42

rather than later. And not shy

54:42

away from difficult

54:45

conversations about dementia or

54:45

being you know, admitting that

54:49

you're getting burned out as a

54:49

caregiver so that i That's why I

54:53

chose communication because it's

54:53

broad enough that it's going to

54:57

add value in every single area

54:57

of your life.

55:02

Thank you for

55:02

joining us on this episode of

55:04

Now or Never Long-Term Care

55:04

Strategy with Kosta

55:07

Yepifantsev.If you enjoyed

55:07

listening and you wanna hear

55:10

more make sure you subscribe on

55:10

Apple podcast Spotify or

55:14

wherever you find your

55:14

Podcasts,leave us a review or

55:18

better yet share this episode

55:18

with a friend. Now or Never

55:21

Long-Term Care Strategy is a

55:21

Kosta Yepifantsev

55:26

production.Today’s episode was

55:26

written and produced by Morgan

55:29

Franklin. Want to find out more

55:29

about Kosta? Visit us at

55:34

kostayepifantsev.com