Subscribe
Share
Share
Embed
The cost & courage of caring - stories that spark resilience.
Caregiving does not usually
bankrupt families overnight.
It happens one decision at a time.
You pay for something mom needs
because she cannot.
You miss work because there's no
one else to stay with dad.
You dip into your savings because
you tell yourself it's only
temporary.
Then your retirement, then your
credit cards.
And one day, you look around and
realize you spent years protecting
someone else's future
while quietly sacrificing your
own.
Hi, I'm Dr.
Mark Ropolesky, and this is The
Caregiver's Podcast.
Today, I'm joined by caregiving
expert Amy Goyer,
whose own caregiving journey
ultimately led to personal
bankruptcy.
If you ever lean awake at night
wondering how much longer you can
keep paying for caregiving
or whether caring for someone you
love is slowly putting your own
future at risk,
this conversation's for you.
Before we begin, please take a
moment to subscribe and follow The
Caregiver's Podcast
wherever you're listening or
watching.
It's completely free, and it's one
of the best ways to support the
show
and help these conversations reach
more caregivers and families who
need them.
Amy Goyer, welcome to The
Caregiver's Podcast.
We're so thrilled that you're here
today.
Oh, I'm so glad to be with you.
Thank you for inviting me, Mark.
Well, in the tradition of the
podcast, we're going to jump right
in, Amy.
And, you know, most people expect
caregiving to cost them time.
They expect it probably to be a
little emotionally exhausting,
even physically.
Very few expect it to threaten
their financial future.
Dick, do you find that people
actually have no idea what
caregiving actually costs
until they're actually living it?
Absolutely.
I think it's a very difficult
thing for people, first of all, to
plan for,
because we don't know how
someone's health is going to
unfold.
We don't know what their needs are
going to be.
You know, so it's difficult to
plan financially.
We can plan in generalities and do
the best we can.
But, for example, someone who ends
up developing dementia is going to
have care needs
depending on the type of dementia
over a long period of time and
increasing care needs.
They're going to need to have
someone 24-7 eventually.
And if you are planning but you're
not planning on that, you're not
going to be prepared.
Absolutely.
It's pretty hard to know what to
plan for, but people often hear
you should plan ahead.
But caregiving doesn't usually
unfold according to a plan.
And, you know, needs change
overnight.
Someone ends up in hospital.
A diagnosis just changes
everything.
How do you prepare financially for
something that can change in a
moment's notice?
I'm so sorry.
To plan financially, I think you
need to plan for the big picture.
So you need to have your basics
taken care of if you're planning
for your own caregiving,
let's say.
And you need to know that, you
know, you're going to be able to
pay your mortgage if you
have one or if you're going to
live in a senior community to pay
for that.
You need to have those things in
place.
And then you need to think about,
okay, what additional care needs
am I going to have?
Might I need care at home?
You know, most, the vast majority
of people do receive care at home.
Vast majority.
So thinking about that.
What are the costs of that?
Who will provide care for me?
How much can family do?
How much are we going to have to
pay?
How much do I want my family to
do?
You know, a lot of people think
about that.
And then you need to think, again,
of long-term, will I need to be in
a facility?
You know, all of these things that
you don't know for sure.
But, and you hope for the best.
And a lot of people just hope for
the best and bury their head in
the sand.
But if you can think about doing
the best you can to plan and know
that if this happens,
here's what my plan is.
If this happens, you know, here's
my plan B.
I think, you know, that's the best
you can do.
I'm going to give you an example.
So my parents were really good
about planning.
My dad was a college professor and
my mom had worked, I think she
went back to work when
I was in third grade and she
worked many different jobs and she
got her master's degree and she
taught.
And so they, you know, they had,
dad had pensioned from two
different university systems.
He had social security.
Mom had some social security, not
as much.
And, um, and they had gotten
long-term care insurance fairly
early on when policies were
way better and, and less
expensive.
So that was great.
They done that planning.
They worked with a financial
advisor and he, you know, helped
them manage, you know, their
savings, investments and things.
So they, they felt like they had a
really good plan.
They had, um, retired, uh, in
Arizona.
My dad had, had, um, uh, been
teaching at Arizona State
University.
So they decided to stay there.
They had a home that was all one
level.
So it was good for aging in place.
And they felt they had their plan
in place.
Uh, my mom had had a stroke when
she was only 63.
So there have been many years of
that.
And dad was her caregiver.
Then dad developed Alzheimer's
disease.
And my grandmother had had
Alzheimer's disease.
So he had some experience with
that, which is, I think, part of
what spurred him to get the
long-term care insurance.
So flash forward, he starts
needing more help.
I move out there to help.
And they want to move to a senior
community because he, we want him
to stop driving.
Okay.
So stopping driving is a big
factor financially because how are
you going to get where you need
to go?
Do you have someone who can take
you?
Uh, are you going to pay someone
to take you?
Is there senior transportation
available that's free or low?
So he wanted to be in a senior
community where they had
transportation, meals prepared,
that
type of thing.
So they made that move.
Their budget just covered it.
And we started getting their
long-term care insurance because
he qualified with his Alzheimer's
disease and mom had more
increasing care needs as well at
that point.
So between that long-term care
insurance and their budget and
everything, they could pay for
that.
In the meantime, though, their
health got worse and worse and
they eventually needed 24-7 care.
So after three years, we had to go
to another plan.
While they did have long-term care
insurance and they could have
bumped up to an assisted
living level and it still wouldn't
have been enough to cover the
costs for both of them.
And dad couldn't be alone at that
point.
Like he really, mom could sit and
watch TV and be alone for a period
of time, but dad couldn't.
He would be constantly like, what
should I be doing?
What's going on?
You know, he had Alzheimer's.
And so I would have had to pay
somebody extra to be with them
because they would have gotten
kicked out of assisted living
pretty quickly.
So I moved them back in with me.
That way, I was paying the
mortgage.
I bought the food.
I started absorbing all those
costs and their budget went to
paid caregivers while I was
working.
And I did evenings and weekends.
So we were making that work, Mark,
for a while.
And then mom passed away.
So we lost her long-term care
insurance payments.
And at that point, my debt started
to go up and my parents started,
you know, their income,
his income went primarily for his
care and his medical expenses.
And I paid for everything else.
And that, you know, they, so I
tell you this because then it was
six years of that.
He lived six years after mom and,
or five years, I'm sorry, after
mom.
Mom lived, died after a year
living with us, me.
And that's a long time to be
carrying that.
And his care increased.
And there were times we needed two
people to get him up and out of
bed and doing things.
I did apply for veterans benefits
and that helped, but we didn't get
that until the last
like year and a half of his life.
So there was a real time there
where he hadn't thought about
veterans benefits, you know, he
hadn't planned for that.
So I had to get him enrolled in VA
health care and all of that.
But, you know, in the end, I ended
up in bankruptcy because I
absorbed all those costs.
And it wasn't because they didn't
do their best to plan.
They could never have guessed when
they were planning all those years
ahead at the high cost
of home care, of, you know, paying
individual caregivers to help
them.
And I think that's one of the
trickiest things is the costs go
up over time.
So it does make planning
difficult.
That said, if they hadn't done any
planning, think what a disaster
the whole thing would
have been at that anyway.
And so, you know, dad didn't go on
Medicaid.
He had veterans benefits that, you
know, was better.
But, you know, some people can do
financial planning and go on
Medicaid, but not everyone
will qualify in that way.
So long, a long response to let
you know that it's critical to do
the planning, have as many
contingencies in mind as you can.
If this happens, I'll do this and
do the best you can.
It's a very powerful story.
And I'm sure there are similar
versions, varietals of this story,
and then completely
separately categorized stories
about people's journeys.
A couple of things resonate is
that no one story is quite the
same, but because of that, that
doesn't really make planning any
easier.
And whether you read J.L.
Collins or David Chilton or any of
these individuals who have really
been important in shaping a
generation's worth of thinking
about planning and financial
discipline and all of these
things,
I don't think they could even
actually come up with a foolproof
plan on how to plan for
this systematically if you really
don't know what's going to happen.
I mean, and to your point,
caregivers don't make one big
financial decision that gets them
in trouble.
They make hundreds of small
decisions because somebody they
care about and love needs them.
So was that your experience?
And when did you realize those
small decisions were really
starting to add up to something
bigger?
Yeah, that's such a good point is,
you know, you do what you have to
do.
And I kind of turned on a dime and
made changes in my life.
The other thing that was critical
factor for me was I was caregiving
for three people at one
time.
So both my parents and my sister
who lived in Maryland, and my
parents were in Arizona, so
long distance.
And so that increases your
expenses, just even traveling to
take care of her, to deal
with it.
When she passed away, I had to
empty her house.
There were numerous trips to
Maryland to get it emptied out,
get it ready, sell it, and it
sold for less than was owed on it.
So I never got reimbursed any of
that.
Like those are factors that just,
you know, there's so much
happening when you're caregiving.
And my loved one's needs were just
increasing.
And there was a hospitalization
and a fall and a surgery and, you
know, always something going
on.
And you just keep going, going.
And as you say, then at some point
you realize this is, I'm losing
control of the situation,
you know, financially.
I think it was about between a
year and two years after my mom
died when I started to feel
a little panicky because I could
see my debt going up because I got
in a point where I could
only make minimum payments on
those credit cards because I
needed the cash to try and not
charge
more on credit cards, you know, to
keep up with the expenses.
And the expenses were increasing.
I had quit my job so I could be an
independent consultant.
So I had to pay my own health care
insurance.
I had, you know, all of those
things going on as well.
So my expenses had increased.
And I had to rent an office when
my parents moved back in with me.
So all of these things were
adjusting and I would keep
spreadsheets of everything, you
know, and I started seeing those
numbers go up and it's really hard
to get that under
control.
So, you know, I think I really
came to a point where I started
trying to get help and I didn't
really get the right kind of help,
I think, financially.
I was trying to...
Tell me more about that.
Yeah.
I mean, my one regret is that I
didn't get a financial advisor or
a counselor to work
with me on my finances.
I worked with my parents.
I worked with my parents'
financial advisor on their money
and I, you know, had that all
under control, but I didn't have
somebody helping me and looking
out for me.
And so that was my big mistake.
What I tried to do is like, I
would go to the consumer credit
counseling and they would
say, well, you should transfer to
a zero balance credit card.
Well, then you do that.
And if you don't get, if you don't
get it paid off by this certain
time, then it's 30% interest,
you know?
So those things, I kept trying to
kind of, you know, put a finger in
the hole and plug
out the dike, but it just wasn't
working.
And, you know, it was right at the
end of my dad's life when I was
just, I was like,
I don't know how to dig out of
this.
And I, then I went to new
financial advisors and lawyers and
everything.
And they advised me that really
the only thing I could do is
bankruptcy.
And it was a very humiliating,
horrible experience.
I mean, it's not a fun thing to go
through bankruptcy, especially
because I felt like a
failure and, but, you know, the
thing that I came to realize is I
am a caregiving expert.
My parents got the best care.
My sister got the best care I
could possibly give her.
And I'm not a financial expert.
So my advice to caregivers is
know, know what your strengths
are.
And, you know, and I, I managed
better than many, many people
might, but it still, you
know, would have benefited me to
have somebody who was saying, I
think you should do this,
try this, you know, and then that,
that might've helped me.
We hear a lot about caregiving and
setting boundaries and, you know,
there's so many elements that
could require boundaries, whether
it's your, you know, your
self-care, your self-awareness,
um, you know, just your energy
expenditure.
But when it comes to caregiving
and issues of the heart, it's very
hard to set boundaries
with someone you love.
But right now we're talking about
financial caregiving boundaries,
which bring it to a completely
new dimension.
And do you think that's almost
foundational for self-care and
survival as a caregiver?
I think it's really critical to
think about that as a boundary.
You know, uh, you can, you can
say, I can put this much into it.
And after that, I can't.
And I think that's really useful
to do and to, to think about that
and think about your budget.
But the tricky thing is though, if
the need is there and no one, they
can't meet the need
financially, the person you're
caring for, and no one else in the
family is pitching in
to do it, what are you going to
do?
You know, sometimes you just have
to do what you have to do.
You know, if, if I'm trying to
think of some good examples, but
if there, if my parents had
a certain need and insurance
wasn't going to cover it, then I,
and I knew it would make
them more comfortable, healthier,
have a better quality of life and
make it easier to care for
them, then I tried to find a way
to do that.
You know, um, so I, I, I do think
financial boundaries are very
useful idea and should
be done.
And I think that's something that
maybe a financial advisor would
have worked with me on, you
know?
Yeah.
Take us back to that time, Amy.
What did your life actually look
like day to day in that ramp up to
where you had to look
at making a big decision about
declaring bankruptcy?
Well, you know, the hardest thing
was I had lost my niece, my mom,
and my sister three years
in a row.
And then daddy was with us five
more years.
And as his Alzheimer's increased,
his skills got less.
He needed more and more support.
There were, you know, there was
pneumonia, there was this, there
was that, and just trying to
keep all the balls in the air
while dealing with, as I
mentioned, all those other things,
my sister's estate and all of
those things.
The grief was so immense and yet
you have to keep going.
So we have the ambiguous grief of
daddy, you know, going downhill
and the actual losses of
all those family members.
And so leading up to that, that
financial stress was always in my
head.
Always, always, always there.
And you, you know, you deal with
what's in front of you so much.
You know, my caregiver calls in
sick.
I have to, and I am working that
day.
How am I going to get my work done
and take care of daddy?
Who can I get to come in?
Can I get anyone to come in?
You know, those kinds of things
happen on a daily basis.
There was always something.
And, you know, the situation
changes and, you know, doctor's
appointments and, you know,
all of those things.
So you're dealing with managing
care.
You're dealing with hands-on care.
You're dealing with the house
needs a new roof or the air
conditioning goes.
And I had two properties to kind
of deal with because I had kept my
rental in the D.C.
area for, because I had to go back
for work periodically.
And, you know, you're just doing,
you're just doing the next thing.
And in the background is that
financial stress.
So as daddy's life seemed to be
coming more and more to a close,
and of course, you never
know that, you know, he was
physically quite strong.
And when dementia was increasing,
I knew I was going to have to deal
with it.
And I had started reaching out to
some different advisors and
looking into it when he passed
away and having to, and then the
grief was so much more constantly
present because I had
had to kind of put aside my
grieving process in a way to keep
caring for dad when, with all
those
losses.
To stay highly functioning.
Yeah.
Yeah.
And so, so, so dealing with that
grief and trying to deal with this
financial fallout at the same
time, it was really hard.
And I was lucky.
I found an attorney who was very
empathetic and understood the
situation and had done some
caregiving and all of that.
So they were very patient with me,
but a lot of tears, you know,
there was a lot of tears,
a lot of grappling and trying to
figure out any other way, anything
else to do.
And then it, it was a long
process.
It took a year before the
bankruptcy was final.
So.
What was it like day to day
watching your bank account shrink
and then day to day, week after
week, knowing that caregiving
expenses weren't ending?
It was a constant adjustment.
I was constantly trying to adjust.
Can we save money here?
Can we, you know, do something
there?
How can I pay the bill this month?
And, you know, it was, it was
definitely kind of one of those
living month to month situations
and trying to meet all of those
needs.
And, you know, that's one of the
things that when we look at family
caregivers and their
spending, I was typical of many of
them.
I mean, I was paying the mortgage
and that is, you know, caregivers
spend a lot of their
money on housing expenses.
You know, we, we, we, ARP has a
cost, a study that we looked at
caregivers spend 26% of their
annual income more than $7,000 a
year.
And I said far more than that.
And 52% of that spending is on
household expenses.
So it's not.
And that's the, that's the
average, right?
Yeah.
50 and it's not just caregivers
coming in and paying a medical
bill or paying paid caregivers.
It's, it's basic living expenses
for many people.
And, you know, 17% is medical
expenses.
11% is personal care.
And then, you know, other things
after that.
So it's important to keep in mind
that I'm trying to just keep
everything going and realizing
that there's not enough to go
around.
So how do you plug this hole and
that hole and then another, you
know, I always think
of a friend who used to describe
it as a leaky hose.
You know, I would plug up one hole
and then spring another leak
somewhere else and a new
need would arise.
I mean, you did such an amazing
job as a caregiver, but looking
back now, who or what were you
angry
at during that time?
I was angry at Alzheimer's.
I hate Alzheimer's.
I'm not a hateful person, but I
was angry at the disease.
You know, that was really the only
thing I felt anger at.
There were times when I felt
frustration, resentment, things
like that with trying to get other
family
members to help who couldn't.
You know, I mean, people have
limitations and, but you still
feel frustrated.
But in the end, you know, the
anger was at what the disease
caused.
If my dad hadn't had Alzheimer's,
for example, he could have been
alone for periods of time.
He wouldn't have needed 24-7 care
for all those.
I mean, it was like a decade.
So, you know, that made me angry.
You mentioned something there,
other family members have
limitations.
That's a bit of a prickly topic
because there's choices and then
there's actual situations that
limit their ability despite the
desire to help.
So, can you sort of expand on that
a little bit?
Because we've heard from lots of
listeners and on social media that
family dynamics has a huge impact.
And it's not just about
limitations and that everybody
wants to help, but they just
can't.
It's they choose not to or they
choose to be far away and just
express opinions and, you know,
pound a fist on the table and say
this is how it needs to be done
while someone with mom and dad are
the actual caregiver day to day.
Yeah.
Yes.
You know, I moderate AARP's family
caregiver discussion group on
Facebook.
So we have about 28,000 family
caregivers.
So this is a really common topic.
It is.
It's a lot.
And there's frustration.
And, you know, I think one of the
key things to think about is what
are people's strengths?
There are people who the thought
of hands-on care causes them so
much anxiety that they will always
try to find a way to avoid it.
There are some people who are
really good with finances and
they'll pay the bills from a
distance or, you know, everybody
has different strengths.
So if you can play to those
strengths and think of it as
putting your team together, not
everybody's going to do the same
thing, people are going to do
different things.
That can be helpful.
I think for me, I think what I
tell caregivers most commonly is
try to be aware of how much energy
you're expending and being mad at
the people who aren't helping and
figure out if that's useful.
Because when you're in a
caregiving situation, it's all
hands-on deck, you know,
internally all hands-on deck.
You have to give yourself to it.
Like, you have to have all the
energy you possibly can mentally,
physically, emotionally,
spiritually.
You have to have that.
And if you're giving away a lot of
it by being mad at family members
or someone who's not helping, then
it's hurting you, but it's not
really hurting them.
So in the end, you have to let
some things go and find other ways
to build that team.
And that may be paid services,
volunteer services, services from
the area agency on aging.
You know, there's a number of
things that you can do.
And I'm not saying, oh, and that's
magic, and then you have enough
help.
Because most of the time it's not
that way.
You never have, few people ever
have enough help.
But it can certainly improve the
situation.
So it's kind of like a puzzle you
put together.
And you're going to be one big
piece of that puzzle.
But maybe somebody else is going
to come once every three months
and stay a week with your loved
one.
And that's a small piece of the
puzzle.
And maybe you'll get respite care
from the VA.
And that's a piece.
You know, so you put it all
together.
There's no one way to do this.
And I try to remind people that
very, very few family caregivers
can do this on their own.
And many end up in that situation
and they'll say, I have no help,
no support.
And sometimes it's because they
choose that in that they feel like
it's their responsibility.
I see this a lot with spousal
caregivers.
You know, they feel like, you
know, I made a vow and this is my
job.
I have to do it.
But nobody can do it forever and
depending on your caregiving
situation.
So it's important to accept help
from people outside the family.
Which is a skill in itself.
Not everybody's good at accepting
help.
Absolutely.
Yeah, we just, the other thing
that we're offering are virtual
caregiver support groups from AARP
now.
And I just had a big conversation
this week in my group with them
about accepting help.
And that, you know, either you
don't because you feel like it's
your duty.
You don't because your loved one
says they don't want anybody but
you to provide the care.
That's a big hurdle.
And, you know, how do you set that
boundary and say, I want to do
this.
And so I have to take care of
myself.
And so I have to have help.
And, you know, all the different
ways to think about accepting
help.
And one big one, too, is people
grapple with that decision of, do
I get paid caregivers?
Do I have my loved one move to a
facility?
That type of thing.
And you're still a caregiver when
you're doing those things.
You're still coordinating the
care.
You're still, even if you're not
providing all the hands-on care,
you're still the leader of the
team.
And you're still caregiving.
So I think it's important to have
that perspective.
We have listeners from around the
world now, and they may not be
familiar with the AARP, but that's
the American Association for
Retired Persons, correct?
That's actually our former name.
So now it just goes, okay, but now
it just goes as IRRP.
AAR, yeah.
So, Amy, as you look back and
people you speak with, is
caregiving usually a slow
financial bleed, or can it drain
these finances overnight?
Absolutely, it can with medical
bills, and primarily it's when
that happens.
There are situations where people
don't have adequate health
insurance coverage.
They don't, you know, they're not
prepared for a catastrophic health
event that happens, and they end
up getting huge medical bills.
And they, some people are able to
get assistance with those bills
and get the bills down.
Other people don't even realize
that that's an option or that they
should look into options or try to
propose something, payment plans,
all that kind of thing.
So that can be really devastating.
The other thing that can happen is
scams and fraud.
So if your loved one falls victim
to a scam, they may lose their
entire life savings.
And this happens more frequently
than you would think, and it's
absolutely devastating and
heartbreaking.
And it doesn't just happen to
people who have dementia.
It happens to very intelligent
people.
You know, scammers are
professionals, and they have
psychologists and everybody else
on board trying to figure out how
to target people and get them to
do what they want.
And I've met quite a few people
who have lost their entire life
savings or a huge chunk of it.
So then they don't have the
resources when they need care.
So, yeah, those things can be very
catastrophic for many people.
In that sort of catastrophic
scenario, caregivers often burn
through savings, then big chunks
of their paychecks, then
retirement savings.
How quickly does that change a
family's future?
Really quickly, especially when
you think about the retirement
savings.
And that was, you just described
my situation, you know.
First, I went through my available
savings.
And then I, the one thing I didn't
do is I never touched my 401k.
And I have a pension from former
employers.
So, that's on my side.
But going through all of this and
then getting the financial planner
and working with them that I do
now, you know, as soon as that
savings was gone, then that puts
me in a situation when you look
and plan out what your retirement
income is going to be.
So, there's a huge missing chunk.
And, you know, we always talk
about retirement planning in terms
of, you know, pensions.
Not many people have pensions
anymore.
Social security and your
investments and savings.
And if you've got a whole one leg
of that stool missing, and we used
to talk about it as a stool, you
know, then you're going to topple
over.
So, it can happen really, really
fast.
And that's one of my main concerns
for caregivers to be, and I'm in
that situation.
I'm going to be working much
longer than I would have
otherwise.
And I'm fortunate that I love my
work and I can do that, but not
everybody can do that.
They may, many caregivers develop
health issues because of the
stress and the strain and not
taking care of themselves, putting
themselves at the bottom of the
list.
And then they can't keep working
longer.
Or, you know, they've depleted all
those savings and investments and
they're in their 80s, you know.
And that's one of the most
devastating things when you think
about it.
Caregivers have done this
important job, saved our country
billions of dollars.
Trillions.
Right.
And then here we are, and we
cannot take care of ourselves.
We don't have a care plan for
ourselves.
We don't have someone to step in
and supplement our finances.
Or, you know, we don't have
families who can help us.
So, that can be a real awakening.
I think people, generally, it kind
of happens.
You're chipped away at, you're
chipped away at.
And then suddenly you come to a
realization that you're not
prepared.
And largely, many people are not
prepared for retirement anyway.
And then you introduce a
caregiving situation in, and that
further depletes their reserves.
It sounds to me like even those
who are, this can come as a shock
and completely hit them sideways.
It's almost as though, I mean,
there's always a good time to
engage with a financial planner at
any time of your life if you
haven't yet.
But even if you've followed it,
and you described that well
initially in your story about your
parents, they really did it by the
book.
But it's almost as though we need
to have that midlife sit-down with
a new breed of planner who really
can get into sort of the granular
details of a couple of paths that
might evolve, depending on family
structure, depending on whether a
partnership has children or not,
depending whether both partners
actually have long-term care
insurance.
That's something that's something
that really struck me from your
story, is that it wasn't
transferable.
And suddenly, that was a huge
hole.
And, you know, the intent was
great, but perhaps the foresight
to have both insured wasn't
because it was a relatively new
area of insurance at the time.
Well, my parents both were
insured.
They both had policies.
But the problem was that their
policies together paid for the
caregiver, who was there that day
I'm working.
And when mom passed, then her
share of long-term care insurance,
so half of it was gone.
What's the hardest thing about
caregiving when you're already
living paycheck to paycheck?
Interesting question.
I think the hardest thing about
caregiving for me personally was
having the—I love my family, and I
want them to be okay, and I want
them to have the best care.
And that living paycheck to
paycheck puts limits on you, and
it's always there in the back of
your mind.
And so you're trying to
constantly—it's constant
decision-making and constantly
adjusting plans and trying to make
the best choices you can at the
time with the information you
have.
And that's really draining.
I mean, that's the hardest thing.
I think emotionally, caregiving is
really hard and stressful for
many, many people.
And you add that financial stress
on top of it, and it can just
really put you over the top.
I mean, there's so many different
things that we carry on our
shoulders.
And once caregiving keeps you up
at night, that's already a
challenge.
But throw this on top of it to
keep you up at night, and it's
almost unsustainable.
You know, I think a lot of people
assume that if they keep mom and
dad at home, they'll save money.
But in your experience, what are
the hidden costs of caring for
someone at home that most families
never see coming?
Yes, it's such a good point.
When you look at the costs of
care, when I was caring for my
parents—so Daddy passed away in
2018, and so that was the end of
that era of my caregiving.
I have other caregiving
responsibilities now, but
different.
And at that time, it did cost less
to pay caregivers at home than
have them in the facility.
As I told you, we made that
choice, and especially because
there were two of them, and we had
both long-term care insurances in
the beginning.
What people don't realize is that
the costs of care at home have
gone up a great deal.
So, between 2019 and 2024, there's
been a 50% increase in the cost of
home care and assisted living.
And, you know, the cost of nursing
home care is always going to be
the most expensive.
But when you look at that
increase, and if you start doing
research on the costs of care,
they're basing it on 40, 44 hours
a week.
When you have somebody who needs
24-7 care, that's a different
story.
And especially people getting up
at night, you know.
And so, people don't always factor
in the number of hours of home
care they're going to need.
And it still may be less expensive
and more desirable in terms of the
quality of care and the quality of
life.
But you've got to look at the
whole costs.
And the other thing they don't
think about is, like in our
situation, my parents had a
mortgage, so I had to still pay
that mortgage.
Some people, their home's paid
off.
That's a big factor.
If they don't have a mortgage to
pay or rent, then, you know,
that's a big factor in making that
decision and that choice.
But you also have to think about,
you also have to think about, with
caregivers coming in the home,
what are you going to provide for
them?
Are you feeding them?
Are they living caregivers they're
going to spend the night?
What do you have provided for
them?
And that was part of the cost for
me.
We had live-in caregivers, so we
could pay them a little bit less,
and they had a place to live for
part of the time.
And, you know, that saved a little
bit on our hourly costs, but I was
feeding them, and, you know,
they're all those...
Cost of relationship, nurturing,
right?
Yes, that's part of it.
If it's a two-way street, you want
them to feel invested, and you
hope they invest in the care of
your loved one equally.
Right.
And, you know, meals and medical
equipment and certain things that
might be provided in a facility,
but they're not often not provided
in the facility either.
So you have to look at what the
actual costs are.
And when you, like, if you look at
assisted living, you have to not
just look at a base price, because
many of them have a la carte
services.
So as you have to increase care
over time, those costs are going
to increase as well.
We've touched on that, too, even
when looking for assisted living
places when we spoke with Janice
Martin.
Things add up, and certainly don't
underrepresent or don't underthink
what your needs may be up front as
you're planning your budget, but
they can ramp up quickly.
You know, you talked about the
team aspect, and some families,
you know, function as well-oiled
machines.
They're a really good caregiving
team.
But what are the expenses that
tend to surprise families the most
when they're already in the middle
of caregiving?
I think medical expenses can be a
surprise, because people make a
lot of assumptions about what
Medicare covers when you're caring
for older adults.
And even for younger people who
are not on Medicare, the insurance
doesn't always cover things.
You've got co-pays, and you've got
all kinds of situations there,
medications that aren't covered at
the full cost, so you have to pay
a higher tier.
An example, my dad had a
medication for his Alzheimer's
disease, and it was—he did not do
well with a generic.
It didn't work for him.
I mean, I would see a huge
downhill slide.
So I had to pay extra.
I think it was over $100 a month
for him to get that brand name of
that medication.
You don't think about things like
that.
And then many people assume that
people will just go on Medicaid.
They just assume you get old, put
them on Medicaid.
I mean, I can't tell you how many
people have said that, and it's
because they don't understand
Medicaid is for the course of the
poor, and you can't always do
Medicaid planning.
Not everyone's going to qualify
for those services, which may
provide some in-home care, which
will be great for some people, but
the majority of people are not
going to be in that situation.
So there are a lot of assumptions
about what's covered somehow, you
know, and not—and they also, you
know,
when it comes to families, a lot
of parents don't talk to their
adult children about their
financial situation.
And so the adult children, all of
a sudden, you're in a caregiving
situation, and they have no clue
what's going on or what their
resources are.
And so I think it's really
important for families to have
these conversations, if possible,
long before the need is there so
that people are apprised.
You never know, someone can break
a hip or have a fall or be in a
car accident.
Things can happen, and people are
thrust into this situation.
So having the conversation about
what resources do we have, what
are our wishes, where do we want
to be, all of those kinds of
things are critical.
It's a hugely powerful, a hugely
powerful move, and we recently had
Beth Pinsker on and talking about
specifically that to really bring
it out into the open early.
Have these conversations when
you're feeling pretty well, when
you're actually healthy, so that
when those moments arise,
everybody's not scrambling and
almost blinded by just not having
any direction.
Yeah, and it's also less
intimidating.
People don't want to talk about
their eventual death and their
eventual going downhill is the way
a lot of people think of it and
all of that.
It's a lot easier to talk about it
as someday, someday if I need
this, someday if I need that.
Have those conversations when
you're healthy and younger when
you possibly can, and then you
adjust the plans because things
change.
Your financial situation can
change, your health situation,
your housing, you may decide to
move.
So you need to keep updating those
conversations over time.
I always say talk early and often.
Can you give us a sense of just
how quickly those caregiving costs
add up over the months or years?
Is it sort of like just a shooting
up completely?
I think the costs are often around
the needs.
So you have to look at someone,
are they in a health care
situation where they're going to
have gradually increasing needs
for care, health care, you know,
and gradually increasing medical
needs, all of those things over
time.
And then something can go up
quickly when it's related to
medical bills.
You have some kind of a health
crisis and you suddenly have a lot
more bills to pay.
It can also be around housing,
their rent can go up, their
expenses for utilities can go up
drastically.
You know, we've had some big
utility increases in recent years.
One thing that happened when I was
caring for my parents after they
moved back in with me, we lived in
Arizona and you have to have air
conditioning.
And both of the air conditioning
units went.
You know, at that time, that was
like $8,000 a unit.
Now they're like $14,000, $15,000
a unit.
I mean, it's just something like
that can be devastating when
you've used all the reserves for
their care.
There's nothing to draw on to pay
that.
So you have to either take out a
credit card and pay it over time.
Then you got interest and then,
you know, get into that or some
kind of a payment plan.
So catastrophic things can happen
in all areas of your life.
And by the way, that can happen to
the caregiver.
The caregiver can have a health
crisis.
The caregiver's home needs help.
You know, your car cannot be fixed
anymore.
You need a new car.
All of those regular everyday life
things happen at the same time
while you're caregiving.
Caregiving doesn't happen in a
vacuum.
Life is going on.
So you have to deal with those
things.
And because of your caregiving
situation, you may not have the
reserves that you had planned to
have for those kinds of
eventualities.
And your loved one's reserves may
be depleted too.
So it can creep up on you, but it
can definitely happen fast as
well.
I mean, people often assume that,
well, we'll use mom's house, mom's
savings or other family assets to
pay for care.
But how quickly can those
resources actually disappear once
the caregiving expenses start
mounting?
Well, they can appear that the
caregiving reserves, the resources
that you think you're going to be
using, can go really quickly
depending on the care needs.
So, for example, let's say you say
you're going to do a reverse
mortgage on the home to have the
money to pay for the care.
And the cost of hourly wages of
caregivers at home goes up
drastically, which it has, as I
mentioned earlier, in recent
years.
And so what you thought was going
to be enough to last a while runs
out.
It's not enough.
And now the house has a reverse
mortgage on it.
It's not a resource anymore.
And where are you going to get
more?
You know, you don't have enough in
your budget.
Things like that can happen.
And all of a sudden you're in a
situation.
And, you know, I think, again, so
many eventualities can happen.
And that's why financial planning
can be very helpful to pull in,
you know, if this happens, this is
my plan B, this is my plan C.
You know, if we do a reverse
mortgage on the home, what are the
repercussions?
What are the pros and the cons?
When am I going to run out of
money?
How long can this work?
And then what will we do?
Different illnesses create very
different caregiving challenges.
And you've mentioned before the
show that the cost of dementia
caregiving is like caregiving on
steroids.
What makes dementia care so
financially overwhelming?
Yeah, it really is.
And it's in many cases, it's
because it's such an overall long
term.
And if you have certain types of
dementia, Alzheimer's, for
example, tends to go over a long
period of time unless some other
health situation intervenes and
shortens a life.
So, you know, my dad was probably
at least 12 years with Alzheimer's
in the very early stages.
He was still driving and doing
well.
But, you know, gradually over
time, those care needs increase.
And that's, I think, the biggest
factor is the length of time with
it.
And the second factor is that they
eventually get to where they can't
be left alone.
So, there's no option of,
eventually, there's no option.
Someone's going to come in for
three hours in the morning and
three hours at night.
You don't have to have someone 24
hours.
That eventually becomes not an
option.
You have to, they cannot be left
alone.
And that's the other big factor.
And so, you have to think about
that really practical aspect of
it.
For me, there was also the factor
of trying to mitigate the
difficult behaviors, the dementia,
the sundowning, the anxiety that
comes with it.
And so, we did things like my dad,
when he retired, he had started
working out with a trainer and
getting a massage once a week and
taking good care of him.
That's all.
He was half 72 when he retired.
And he was in his 80s.
He was probably 12 years later,
starting showing some early,
early, early signs of dementia.
And so, we kept that going.
And one of the things I noticed
was, when he had that massage, he
had a cognitive boost for the rest
of the day and for the next day.
Like that, and, you know, I'm not
a researcher and I'm not a doctor
and I don't exactly know why that
is, but we saw it.
And he was happier and easier to
take care of and more verbal and
all kinds of things.
So, that was something I kept
going.
The other thing was, after my mom
died, we went to acupuncture
because it helped with the
emotions in a way that he couldn't
do talk therapy or any kind of, he
was grieving, but couldn't process
it in the same way.
And that, the acupuncture process
helped immensely with his anxiety
and his grief and really kept him
going.
And we worked with the Chinese
medicine doctor on herbs to take
when he had, when he would get
very worked up.
Whereas many people are, they're
trying to find a medication that
will do that, a prescription
medication.
And these were traditional Chinese
medicine is for them.
And they are, she prescribed these
herbs for him.
But I call them herbs because
they're, you know, it's, it's
traditional Chinese medicine.
But dad didn't do well with any
kind of psychotropic medications
or things that were supposed to
calm him made him worse.
He'd be bouncing off the wall.
Her doctor's called agitation.
You know?
And so, his brain just did not
process those medications that
way.
But this traditional Chinese
medicine helped.
Now, for him, that was critical.
It made it possible for us to take
care of him at home where we
wanted him to be and made his
experience so much better, his
life.
So, but I had to pay for that.
You know?
So, these, the extras are choices.
And they're difficult choices when
you're struggling financially.
So, you have to weigh, this is
going to help us get through the
day and sleep at night and things
like that, which are critical to
come through and not have your
entire breakdown.
Huge indirect cost savings.
Yep.
Yeah.
So, when families can't afford
professional help, someone usually
has to step in and fill the gap.
How do caregivers manage trying to
hold down a full-time job while
also being at the bedside in the
area?
I will tell you it's easier than
it used to be only because working
from home and flexible work
arrangements are getting more and
more common.
You know, that, I was very
fortunate and that was the reason
I became a consultant.
So, I would have that flexibility.
And I worked full-time the whole
time.
My mom, at one point, was
hospitalized for 40 days and
nights.
And I was there all but, I think,
five nights my sister relieved me
and I worked on the couch, the
little chair thing in her hospital
room every day on my computer
because I could do that.
And I think more people are having
that flexibility.
I was just talking to a caregiver
today who, she's got two adult
children with special needs and
she's got her aging mom.
And so, she's sandwiched between
the two.
And she was saying, you know, one
year her daughter was hospitalized
five times.
And she kept working through the
whole thing because she'd have her
laptop and she had that
flexibility and was able to do
that.
So, that's a big help.
Flexible work options, flexible
work locations.
You know, I've known people who
get transferred to a different job
site because it's closer to where
their loved one lives that they're
caregiving for.
And they can go check on them on
their lunch break or they can do
certain things they need to do,
not have as long of a commute.
There are things like job sharing
where you might say, I need to cut
back to part-time, but I don't
want to stop working and lose my
job.
And somebody else wants to work
part-time too, so you share a job.
Some people go through things like
phased retirement.
They start cutting back their
hours.
They're not ready to retire, but
they need the time for caregiving.
You know, we're trying to educate
employers about all of these
options that can help them keep
valuable employees that are
absolutely critical to the
workforce and not let them leave
the workforce.
Because it doesn't help employers
or the employees to completely
leave the workforce for
caregiving.
Employees stand to leave over
$300,000 in lifetime benefits and
wages if they quit working for
caregiving.
What's interesting is there is
some data emerging from larger
corporations now where they've
actually done some analytics.
And it's actually showing that
more flexible approach to a
caregiver employee actually allows
them to caregiving better, but it
also improves productivity at work
when they are there.
And the numbers may actually work
in favor of that thinking, which I
think is really hope-producing, if
anything, just giving us some
inkling of how change can occur.
And I think when we look at ground
zero when it comes to caregiving
across North America and the
world, that kind of fuel for hope
for change makes it feel within
reach.
But what happens financially when
the only option left is reducing
hours, taking unpaid leave, or
leaving work altogether?
Well, as I mentioned, if you leave
work altogether, you know, you're
going to lose a lot of lifetime
benefits and wages, a huge amount
of value there.
Sometimes people can cut back to
part-time and it works for them,
but that means they're not having
the income they would have as the
caregivers are not.
And so they're not putting the
money into savings for retirement,
you know, they're not taking care
of their own financial security if
they're not ready, you know, if
they can't really swing working
part-time.
And sometimes some people are
afraid to do that, then it puts
their job in jeopardy.
You know, sometimes some employers
say it's a full-time job, and it's
not a part-time job, so you just
lose your job if you can't work
full-time.
So you have to look at what the
options are.
And I think it's also important to
note that I know for me and for
many caregivers, they say work is
our respite.
It's our little bit of a brain
break from the caregiving thing,
so being able to focus on
something else.
It's a really good life balance
thing.
And I think, you know, if
employers can understand that and
see it as a balance, but, you
know, you're never in perfect
balance, but you're kind of
constantly adjusting to, okay,
they have caregiving
responsibilities that are very
important and committed to that
and work that they're very
important and committed to.
And that's okay.
You can have, you know, it's not
that if you're, if you have
anything else going on in your
life, you can't be a good
employee.
You can.
So if you can find ways to
continue working.
Sometimes people change jobs.
They take a less stressful role,
for example, where, you know, they
can, in fact, my dad was an
example of that.
My mom had that stroke when she
was about 63.
And she was not working.
Dad was chair of the communication
department at ASU.
So he was, he had a stressful,
responsible job.
And he stepped down his chair
sooner than I think he would have
otherwise.
He continued to teach, less
stressful, less responsibility,
because he had to do more for mom.
So sometimes people do that.
They'll just take a less stressful
role that may be less time
consuming or, or even just
mentally stressful because you've
got all these responsibilities
swimming around.
But you don't have to do that.
I think there are many people who
have very responsible jobs and
they, they manage it.
And the difference is the support
they get.
You know, are they getting
counseling?
Are they getting part of a
caregiver support group?
Many employers offer employee
resource groups that are focused
for caregivers.
So you get to know who you're
working with who's also in a
caregiving situation.
And you help and support each
other.
You know, employers who make sure
that their employees understand
the benefits they have available
to them.
If they do need to take leave,
like Family Medical Leave Act or
paid leave.
We're trying to see, you know,
we're encouraging employers and
AARPs advocating for paid family
leave laws across the country.
And we're seeing those increase.
And there's movement, right.
Yeah, there really is.
I've also read about different
states coming out with certain,
you know, tax credits for care.
You're like, there's different,
there's movement on a lot of
fronts, which is really refreshing
to see.
Yes.
But as I'm sure you'd understand,
burnout doesn't come with an
invoice.
And it still has that huge
financial cost.
How does burnout quietly actually
become a financial problem?
Because we are unable to function
when we're in burnout.
It affects the way that we
function.
So it affects our decision making.
It affects our health.
It affects our mental capacity and
our emotional capacity.
All of those things.
It basically eats away at a person
when you're really in a burnout
situation.
So you're not as efficient.
And you may struggle to actually
do a good job at anything, you
know.
So it's really important to
identify burnout.
And I think it's critical to focus
on what's leading up to burnout.
You know, what are the red flags
that start coming up that I'm
getting to a point,
where I'm going to fall over the
edge?
And one example I can give you, I
know, is when you start to see
changes in yourself.
You know, I'm not a yeller.
I'm not, it's just not who I am.
And I can remember one time being
on the phone.
But the lab had messed up my mom's
lab test.
And I, in the back of my head is,
if I have to take her back to the
lab, that means I have to get mom
and dad and dad's service dog in
the car, in the heat.
It's 120 degrees outside.
I have to get them to the lab.
I have to get them out of the car.
I have to get mom back there.
Then I have to get her to do the
sample.
Then, you know, all of these
things are in the back of my head.
And so I was, and I was concerned
about her health situation.
So there's a lot of fear in there
that was creeping up into me.
And I was yelling at this person
on the phone.
And I just don't do that.
And I heard myself doing it, you
know, I thought, this is not me.
And she put me on hold and I
thought about it.
And I thought, what am I doing
here, you know?
And I realized it was, it was
fear.
It was mostly coming from fear.
And I thought, what would the, and
I thought, what would the opposite
be?
I would be love.
So what would, what does love do?
Love solves the problem and moves
on, you know?
So I was able to come back and
say, okay, let's, let's just
figure this out.
But that was a red flag for me.
Because I was not myself.
And I realized I had too much
stress.
I had too much, you know, and I,
at the time I made a bit of a
change in our, our care plan.
And I also started once a week
working, going to Pilates, doing
something for myself, you know?
And I was able to work that out
with the caregiving schedule and
all, all of that.
But you have to see, that's a red
flag.
But there's also red flags like
not paying your bills.
You know, your finance is going
downhill.
There's red flags like
relationships falling apart.
Your other relationships in your
life.
Your health is suffering.
You're not sleeping.
Sleep is number one priority.
You cannot cope.
You can't function.
You can't have good health when
you're not getting good sleep.
And you have no pain.
You lose your patience.
You know, all of that goes.
So, if you're not sleeping well, I
think it's really critical to be
aware of that and try to do
something to adjust things so you
can sleep better.
Be aware of your, how you're
dealing with, if you're working,
you know, what is your attitude
towards your work?
Are you starting to dread it?
Because, just because it's more to
do, then, okay, what do we need to
adjust in our situation?
Because I do want to work, and I
love my work, but why am I
dreading it, you know?
So, just being very self-aware.
I wrote a publication for ARP
called Care for the Caregiver, and
that's available as a free
download on the ARP website.
And you can, I put a list there of
things to watch out for, and
including if you start to have
depression, anxiety, suicidal
thoughts, reaching out for help is
absolutely critical.
And one of the best things you can
do is connect with other
caregivers, truly, in a virtual
caregiver support group or an
in-person one, you know, Facebook
groups, online groups, any kind of
way.
Because what I find, and again,
I'm interacting with caregivers
every day, what I find is that as
soon as they feel validated, like
somebody gets it.
This is hard what I'm going
through, and I'm not making it up,
and it's not, they feel better.
There's like a release, you know,
and maybe we're not, we haven't
solved the problem for you, but
you have been heard and noticed.
Authenticated, yep.
We see that too, often, just with
some of the comments we receive,
and it's just like a three-letter
word, yes.
Yes, exactly.
Amy, do caregivers sometimes
become so burned out and depleted
that they can't any longer make
clear financial decisions?
Absolutely.
You know, burnout and stress and
lack of sleep and all of these
things can affect how we think and
the ability to actually get
through it.
And we might make poor decisions,
and I probably did make some poor
decisions, you know, in terms of
financially, by not getting more
of a financial advisor, because I
was just doing the best I could
from minute to minute.
You know, so I think, you know,
burnout affects every aspect of
our life, including financial,
health, you know, emotional,
relationships, mental, everything.
Folks, we're going to take a
little break, and in the tradition
of the podcast, I get a chance to
hear from our illustrious
production crew, who always have a
couple of good questions for our
guests.
So, I've noticed in preparing for
this episode, and also in some of
the other conversations that we've
had around financial caregiving,
that it's typically framed from a
middle-class perspective.
There's some assumption that there
are going to be resources, like
even in this episode, if you have
mom's house to sell, or you have
this or that, or you're going to
be sort of burning through
savings.
So, when we speak about what this
looks like at the poverty line, or
below the poverty line, it seems
like just a completely different
experience, even if there are
things in common that we all go
through with burnout, and all of
the sort of the normal things that
come with caregiving.
But the experience below the
poverty line is typically, the
only thing we really hear from
people is Medicaid.
Obviously, if you're in the United
States, what does this look like,
dealing with these issues, when
you have absolutely zero resources
to start with?
Well, if you have absolutely zero
assets and low, low income,
Medicaid is an option, and you may
qualify for Medicaid.
And keep in mind that Medicaid is
a federal program, but it's
administered by the states.
So, states have different
requirements.
So, you might qualify in one state
and not another.
So, it's important to find out in
your own state.
And Medicaid can be a huge help if
you are at that point.
And there are Medicaid planers
that can help you look ahead and
try to plan for a time when you
might need to qualify for
Medicaid.
It can happen, especially for
people who are living in a
facility, for example, that type
of thing.
But keep in mind that Medicaid
isn't everything.
Like, you know, you get a certain
number of hours of care in the
home that can be really helpful in
some states if they have Medicaid
waivers for in-home care.
But it may not be 24-7 care.
So, if you've got somebody who
can't be alone, somebody still has
to deal with that, be with them.
And I heard lots of stories of
people.
And my partner, he was a captain
of the fire department, and he
would tell me stories all the time
of going into people's apartments.
And, you know, they had care
workers during the day, but they
won't have anybody there at night
because they had no family who
could come in and do it.
And they didn't have any money to
pay anyone.
So, Medicaid can be a huge help,
but it doesn't answer every
problem.
And if your income is low enough
to qualify for Medicaid, you
probably don't have money for
anything that's not covered.
And, you know, whether it's a
better wheelchair cushion or, you
know, there are all kinds of
things that come up.
Incontinence products are a huge
expense.
Huge.
And sometimes that can be
provided.
You know, my dad was a veteran,
and the VA ended up providing some
incontinence care products for us.
But they weren't always the
greatest ones and didn't always
work.
So, then I had to buy additional
things.
If you're a really, really low
income, you don't have the money
to do that.
So, there's that level.
And then the people who are just
above qualifying for Medicaid,
they don't qualify for Medicaid.
They're still very low income.
They don't even have the Medicaid
resources, and they have, you
know, not much of anything to pay
for any care.
And you think about people who are
living alone in that situation.
Sometimes they have great
neighbors who look out for them.
But many people suffer and don't
have anyone looking out for them.
And, you know, care is a choice.
You know, people think they have
no choice.
Sometimes they say they have no
choice to care for someone because
there's no one else to do it.
It's still a choice.
I've seen people over my past 40
years who don't have anybody
looking out for them, can't afford
to pay for care.
And it's not because they don't
have family somewhere.
They're choosing not to do it.
So, it's a really, really tricky
situation to be in that low.
And that's why you hear so much
about middle income because those
people fall through the cracks,
too.
You still may have a little bit
higher income, but it's still not
enough to pay for the care that
you need.
It does sound like there's a huge
gulf, though, between what a
middle class experience of this
might be from when we have no one
and no resources whatsoever.
Is there a massive difference in
the quality of care that's taking
place?
It really depends on the
situation.
Sometimes people who do qualify
for Medicaid and have home care
workers can get some good quality
care, but not always.
And I hear a lot from family
caregivers who their loved ones on
Medicaid and they qualify for
assistance, you know, some home
care in the home, and they can't
get anybody good.
And I just had, there was someone
in the Facebook group that posted
this week, and she said, what am I
going to do?
The caregiver they sent is,
couldn't even, like, she gave some
really specific examples.
Like, how do you turn on the oven?
How do you, where are these dirty
dishes and they're in the drying
rack, clearly clean?
Like, things that are kind of
like, okay, common sense.
So, you, they send somebody to
care for your loved one who
doesn't even, can't even deal with
those kinds of things, much less,
can you trust them to take care of
your loved one's personal needs
and make sure they're taking their
meds?
You know, I mean, so you don't
always get great quality care.
Sometimes you do, and there are
amazing caregivers out there that
are employed through Medicaid and
everywhere else, but it's not a
guarantee.
And then there is a worker
shortage.
So, it doesn't matter what your
income level is, if you are having
paid caregivers come in and
there's nobody to come, they don't
have anybody to send, they can't
find enough workers.
People call in sick or say they
don't want to work that day,
there's nobody else to send.
And so, that's another factor
affecting, I mean, you could be
the wealthiest wealthy, and if you
can't find somebody to do the
work, then you're in trouble.
And that happens across the board.
Thanks for answering my question.
Sure.
It sounds like there's a bit, it
sounds like there's a bit of a
profit over people creep that can
sometimes enter that equation as
well.
Are you witnessing it even at that
level?
Oh, sure.
I mean, you know, it's always
going to be a factor in terms of
care provision and facilities.
What, you know, and I'm not an
expert on, a business expert in
terms of how these organizations
are set up, but you do have to
look at, okay, how much, you know,
and many times with home care
agencies, sometimes the care
worker, the direct worker is not
getting paid that much, but you're
paying more.
So, you may be paying $35 an hour,
but how much is the actual care
worker getting paid?
And that's a factor in terms, and
what kind of line do they have for
increasing their income or moving
up the ranks or, you know, what's
their progression path?
And if there isn't one, then that
may not be something they want to
do.
So, we need to really work on
better conditions for these
workers so that people are
attracted to these jobs, valuing
them.
You know, they're critical care
workers, and it shouldn't be seen
as the lowest level of the rung
type of job.
It should be seen as the actual
base of what we need.
And the same is true of unpaid
family caregivers.
We need to be seen, we are the
backbone of the long-term care
system and need to be seen that
way and valued.
You know, it's over $600 billion
of value in the care that unpaid
family caregivers are providing.
We're back from some really
meaningful engagement with our
production team.
We always like this feature on the
show.
But, Amy, I couldn't help but
think while I was listening to
you, at what point does choosing
to help someone you love become
financially dangerous for the
caregiver?
That point can come really quickly
for some caregivers, and it can
take a while for others like it
did for me.
I mean, it depends on what your
financial security is going into
the situation, how much you're
having to pay for, you know,
out-of-pocket expenses.
And if you change your work
situation, all of those things are
factors.
So, how quickly it happens is
going to really depend on the
unique individual situation.
But I think with coming to that
point where you truly choose to
dedicate yourself to someone you
love as a caregiver, you need to
stop.
And, I mean, I think this is
probably the most, one of the most
important messages I've heard from
you today is to stop, breathe, and
sit down.
And if you can't plan yourself, do
a midlife plan or a caregiver
plan, something we've never,
barely ever read about.
It didn't come out in the books
generations ago.
But it's real today, and it's a
growing population today.
Absolutely.
People are living longer, but with
chronic illnesses.
So, when people did financial
planning in the past for
retirement, they didn't always
think about including the costs of
their care.
And, you know, that's more a part
of financial planning now than it
used to be.
And it's great if you are looking
for someone to help you with this
type of planning.
Try and find somebody who really
has a realistic viewpoint of those
costs.
And I think we, so we have a
little bit more realistic view.
But what we don't do is plan for
when we are the caregiver.
There's planning that people do
for their own retirement and maybe
their own care when they're older.
But what about planning for the
years that I may be caregiving?
You know, and I know I certainly
didn't plan that way.
And even though I knew I would
probably be the one to help in
some way.
And this is where I talk about,
you know, we all kind of hope for
the best and bury our heads in the
sand.
But, you know, that's not always
going to work.
We need a bit of that.
But at the same time, I think it's
a really important sort of new
call to action for caregivers
everywhere.
Take a step back, take a breath,
and delve in a little bit.
Yeah.
Is there a point where helping
someone you love really starts
putting your future at risk, even
though emotionally you don't feel
like you have any other choice?
Is there a financial point of no
return?
I think that's a good question for
a financial advisor.
I think when you start depleting
savings that are for your own
financial security, especially in
the future,
that when you start depleting
those things and you reach a point
where you realize it's going to
affect what you're going to have
in the future,
when you realize, okay, this is
going to mean I'm going to have to
work five more years than I would
have otherwise.
Can I do that?
Am I willing to make that
exchange?
I was able to do that.
When I first went out to Arizona
to care for my parents, I was 48,
I think.
I had a lot of working years ahead
of me.
And I think in my mind, I just
kept thinking, I can work my way
out of this.
I can handle this.
I can do this.
You know, not everybody can do
that.
You know, caregiving comes at all
different ages.
We have caregivers who are 18, 20,
25 years old as well.
So at what point are you in your
life, you know, and how are you
looking at your working years and
your savings and years getting
money?
So, yeah, I don't know that
there's one point.
There's no dollar amount.
I can tell you that, okay, now
you're in trouble.
But, again, that's where a
financial advisor can be really
helpful because they might be able
to point that out.
And I'll tell you, one of the
reasons I didn't have a financial
advisor is because I didn't want
to spend the money on it.
I kept thinking, I need to pay
that money on a bill.
I can't, you know, I can't do
that.
Looking back, it would have been
the best money I could have
possibly spent.
And I wish I would have made some
slightly different choices in that
regard.
You know, maybe it's relying on
high interest credit cards.
Maybe it's something else.
But what are the warning signs
that tell you a caregiver has
really crossed the line and is
putting their own future at risk?
Well, when you're constantly
stressed about money is a big
warning sign.
That's a red flag.
When you, yeah, when you start,
what's the saying, robbing Peter
to pay Paul?
You know, you take money from this
to cover this and then you can't
do this.
And, okay, I'm not going to pay
the electric bill.
I'm going to pay the electric bill
late so I can pay the gas bill.
Or, you know, you're moving things
around like that.
I think that's kind of a red flag
to be aware of.
And caregivers do this on a
regular basis just to get through
the month.
Okay, how am I going to do this?
When can I pay this?
You know, when, and absolutely,
you know, the credit card debt is
such a big problem these days
because interest rates can be 30%
or more.
And, you know, there's no limit on
that.
They can do that and then you're
never going to pay it back.
And, you know, and they can be
raised arbitrarily at different
times.
And, you know, that can be a big
red flag.
That was obviously a big thing for
me.
And I think many caregivers.
And, you know, I got to say, Mark,
the reason I talk about this so
openly is because I know I'm not
the only one.
And people don't talk about money.
Money is like a taboo topic, you
know.
Historically, it is.
It's, you know, it's very private
and it's, and I have limits on,
you know, what I will talk about.
But I want to make it clear that I
know I'm not the only one.
And I've had caregivers come up to
me and say, thank you for sharing
that.
I went through that too, but I've
never told anyone.
And then you carry that with you.
And it's shame.
And, you know, I'm not ashamed of
what I did for my family.
I'm glad I did.
I don't have regrets in terms of
that.
But I, there is shame in having
financial challenges.
And I'd like to remove that shame
because you're doing the best you
can.
And instead try to access any kind
of financial counseling or
supports that are out there.
You know, we, we teach our
children don't put and buy flashy
stuff and put it on high interest
credit cards because you're just
fooling yourself.
But imagine being in the scenario
where acts of caregiving and acts
of love require you to do that and
the existential dilemma you face.
It's very humbling.
That's, that's a, yeah, it's like
quality of care.
It's like I was telling you about
the things that made dad's journey
easier and made it possible for us
to care for him at home.
Costs money.
Yeah, everything costs money.
And so that's a choice to make.
And, and, and many people would
not have made that choice.
And the whole situation would have
dragged them down even faster.
And I could have done that.
And maybe I should have done that.
But at the same time, I was, you
know, making that choice.
There's an element of love and
caring.
And there's an element of
survival.
Literally survival.
And if this is going to make it
possible for me to keep going day
to day, sometimes you have to do
those things.
And again, go back to my story
about the air conditioners.
I'm not talking about I was going
out and charging up credit cards
on ridiculous things.
You know, when you, you, you, when
you have to have home repairs, you
know, you could have an electrical
repair in your home.
Bam, you know, you're going to
have to do those things that are
essential that you have to do.
You alluded to earlier, one of the
hardest things about caregiving is
that nobody really knows how long
it's going to last.
How do you make good financial
decisions when you do the best you
can and you re-evaluate
periodically.
You keep re-evaluating.
You keep adjusting as time goes
on.
You know, with dad having
dementia, yeah, who knows?
He had a heart condition.
He could have died in two years or
lived for 20.
And so, as you go along, you have
to just keep adjusting and keep,
you know, evaluating what you can
do, what's changed.
I think one of the things that I
want to mention that often is not
talked about are all the benefits
that might be helpful.
So, for example, I mentioned dad
ended up getting veterans aid and
attendance benefits that helped
pay for his care.
But we also, I enrolled him in VA
health care, and that meant he
got, he was eligible eventually
for home-based primary care, which
was a huge help.
And those folks may, you know,
they were the ones that said, oh,
well, you can get some
incontinence products.
Oh, well, you can get some medical
equipment.
You can get ramps.
You can do, you know, these things
that I would have been spending my
money on.
So, that wasn't until the end of
his life.
I wish I'd done that sooner.
But those things can be available.
It might be that someone qualifies
for heat, you know, help with
their electrical, their energy
bills.
And that can lower that expense,
so you have, you adjust things
better.
It might be that they qualify for
SNAP or some type of nutrition
benefits.
Meals on wheels for older adults
can be a huge cost, I think, for a
lot of families.
And that can, you know, you get a
home-delivered meal, you get a
decent food, and it's low cost or
no cost.
You know, there's all kinds of
benefits like that to look into
and make sure that you're really
maximizing the, what I think of as
the income that way.
You know, what have you got going
to, you know, and lowering your
expenses as much as you can.
And that's a big part of that
whole financial plan.
And being aware of your loved
one's income, assets, all of those
things is going to be part of
applying for those things.
And there's help out there.
You know, many of the area
agencies on aging in the U.S.
at least have people who are
specifically designated to help
you with benefits applications or
at least educate you about what
the options are.
So, some consultation regarding
elder care and benefits, and there
too, a one-hour consultation could
be a great opportunity cost with a
good return on the investment.
I like your idea about
re-evaluating as you go and, you
know, facing the challenges of
caregiving and the financial
challenges that come with it.
We can get pretty hard on
ourselves and our caregiver's
inner critic may be a very
powerful voice.
But I think re-evaluation and
being aware that you're
consciously re-evaluating as you
go could be really good fuel for a
caregiver's self-compassion and
grace.
Absolutely.
Listen, nobody is a perfect
caregiver.
And I don't know anybody who's a
perfect financial manager either.
So, you give yourself some grace.
You constantly adjust.
You make the best decisions you
can with the information you have
at the time.
And you can always make another
decision in the future.
Now, how can you prevent
caregiving from just taking
everything?
If someone's at the beginning of
this journey, you know, what are
the most important things they can
do today to protect both the
person they're caring for and
their own financial future?
Well, first is to look at the
person you're caring for their
financial situation.
Get a good handle on their income,
their resources, their assets,
their budget, their expenses.
Then do your research about the
cost of care.
So, if your idea is that they want
to stay in their home, okay, if
they need this amount of care, how
much would that cost right now?
If they need something else, how
much would that cost?
If you're thinking they want to go
to assisted living, what in their
area or in your area, what are the
costs?
Because that can vary greatly
across the country.
So, get some realistic information
about the costs of care and the
options of care.
You can hire caregivers directly.
You can hire through an agency.
What are the pros and cons and the
benefits of all of those things?
And so, looking at those things is
really critical in terms of making
a realistic budget, but also just
a plan, you know, a real
caregiving plan.
Then look at your own situation,
your own resources, your own
finances.
What if I have to take time more
off work?
What are my options?
Am I going to have to take it off
without pay?
What would I do if that was the
situation?
How would I pay my bills, you
know, looking at, you know, people
who know about Family Medical
Leave Act?
Well, they may be able to take
some time off, but it may not be
paid.
So, if you have to do that, can
you handle it?
Can you handle a lower paycheck or
no paycheck for a while or however
that might work for you?
Well, this means like sitting down
and going through some credible
scenarios.
And, you know, while a care or
future care recipient or new care
recipient, so to speak, is able to
engage in the conversation,
actually have some talk about
compromise and boundaries and what
they value and what they might be
willing to sacrifice if difficult
decisions need to be made.
Because their answer could be, oh,
don't worry about that.
I would never want that.
It's expensive and it really
doesn't mean that much to me.
Yet, as a caregiver, you want to
give them everything.
And if you only ask up front that
they really don't value that, that
could be important in shaping how
you think as a caregiver when lots
of competing priorities are facing
each other.
Absolutely.
I've heard so many people say, if
I need care, just put me in a
facility.
I don't want to do this to my
children.
I want them to have to take care
of me.
But they have no concept of how
much that's going to cost.
You know, they don't understand
that you don't just go to a
facility.
You have to pay for it.
And how is that going to be paid
for?
So have a realistic view of it.
And I think, you know, we've
talked a lot about the fact that
caregiving situations unfold,
health unfolds.
We don't know how it's going to go
for sure.
But doing this kind of planning
and thinking about it ahead of
time and really just spending some
thought on, do I have boundaries?
What are my boundaries?
What am I willing to do?
What am I not willing to do?
It can help you be a little more
prepared.
If that time does come, you'll
have some thoughts about it.
You'll have some background.
You'll have maybe some discussions
about that already.
It may be that when you're there,
you feel differently about it.
Or your situation is different by
the time that happens.
But you at least have given it
thought and you've communicated
around it with your loved one that
you would be caring for.
These are strategic boundaries.
These aren't selfish boundaries.
Lest anyone be confused, this is
what can make or break it.
Amy, I'm so glad you were here
with us today.
And thank you so much.
Looking back on everything that
you've lived through, if you could
sit across from a caregiver today
who feels like they're slowly
losing everything, what would you
want them to know?
I would want them to know they're
valued and acknowledged and that
many, many people know how hard it
is and what they're going through
and can empathize.
And then I would want them to know
that there's help, you know, that
there are support groups and
caregivers and care managers and
other people who can help them
think through how to get out if
they're feeling stuck, how to move
forward.
And what can they do, maybe do
something differently, whether
it's to get more help or get a
different benefit or get in a
different situation.
You know, I want them to know
that, you know, I'm not one to say
they're not alone because I've
been alone caregiving.
You know, I've been in those
little hospital cubicles in the ER
for hours and hours and people
say, oh, you're not alone.
And I'm like, yeah, I'm alone
physically, but I'm never without
support.
And that's what we need to know,
that we're not alone in terms of
people understanding and people
who want to support us.
And it's just connecting with the
right people and the right
resources and the right, you know,
organizations like AARP and the
Area Agencies on Aging and all the
organizations that can be helpful.
And that, you know, there may be
something or multiple things that
can help and alleviate their
stress, whether it's mentally,
emotionally, physically,
financially, to help them get
through this.
Plan, be kind to yourself when you
recognize your knowledge gaps, and
choose to not be alone.
Thank you for joining us, Amy.
This wraps up another episode.
I'm your host, Dr.
Mark Ropolesky, and this is The
Caregiver's Podcast.
One of the hardest truths about
caregiving is that love does not
always come with limits.
Many caregivers will sacrifice
their time, their health, their
careers, and sometimes even their
financial future because they
cannot imagine doing anything
else.
But caring for someone you love
should never mean losing yourself
in the process.
Amy, thank you for sharing your
story so openly and for helping
caregivers understand that
financial struggle is not a sign
that they've failed.
It's often one of the hidden costs
of caring deeply for someone else.
And to everyone listening, if this
conversation helped you feel seen,
please share it with another
caregiver who may need to hear it.
Until next time, take good care of
yourself, because you matter.
Before you go, please take a
moment and subscribe to The
Caregiver's Podcast wherever
you're listening or watching.
It's free and it helps us out
tremendously.
Leave us a review.
Send us your comments.
Share your thoughts.
Before we wrap up, I wanted to
remind you of something important.
The conversations you hear on this
podcast are here to inform, to
support, to spark reflection.
We're not a substitute for
professional medical advice, care,
therapy, or crisis services.
Listening to this podcast does not
create a doctor-patient or
caregiver-client relationship
between us.
If you're facing a medical
concern, health challenge, a
mental health challenge, or a
caregiving situation that needs
guidance,
I encourage you to reach out to a
qualified professional who knows
your story.
If you're ever in crisis, please
don't wait.
Call your local emergency number
or recognize crisis hotline right
away.
You deserve real-time help and
support.
The views you hear on this show,
whether from me or my guests, are
our own.
They don't necessarily reflect any
organizations we work with, are
part of, or have worked with, or
been part of in the past.
This podcast is an independent
production and it's not tied to
any hospital, university, or
healthcare system.
Thank you for being here, for
listening, and most of all, for
taking the time to care for
yourself while you continue to
care for others.
I look forward to hearing from
you.