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The cost & courage of caring - stories that spark resilience.
How do you know when keeping a
parent at home is asking more than
you can give?
And what if you promised you would
never move them into a care
facility?
I'm Dr.
Mark Ropaleski and today on the
Caregivers Podcast, Senior Living
Advisor Janice Martin
joins us to walk through the move
into care, from knowing it's time
to what happens after you go home.
We'll also keep track of the costs
along the way, including the ones
families don't see coming.
Janice, welcome back.
So today we're going to work with
some numbers.
We're actually going to follow a
model family through the journey
from in-home care to assisted
living and to all the extra
add-ons that it costs.
We're going to use U.S.
dollars and here's the family
model.
Two parents in their 50s, both
working, three kids, two have
finished university, one still
in second year, about five miles
away, a loved one, a grandparent,
a parent whose needs are
increasing and whose care demands
are increasing.
We're going to look at what does
it cost at home?
What does it cost to go to
assisted living?
And what are the add-ons?
Janice Martin, welcome back.
Thank you.
Welcome back to the Caregivers
Podcast.
We're so happy that you're
visiting with us today.
Thank you.
I've really enjoyed being on this
before and I'm so glad you invited
me back.
Well, today we've got caregivers
in mind, so we're going to jump
right into it.
And tell me, Janice, before a
caregiver can compare home care,
assisted living and memory
care, what does each provide and
roughly what does each cost on
average?
So, home care.
There are different types of home
care.
Some of them can provide hands-on
care.
They can do the showering.
They can do the dressing.
They can do the toileting and
continence care.
Others are only for companion.
They could possibly drive a person
to places that they need to go.
They could just sit with them
while the primary caregiver runs
on errands, gets a little break
for themselves.
And surprisingly enough, in the
United States, the costs are
relatively the same.
It's about how they are licensed.
Most home care companies that I'm
familiar with have a minimum
amount of time each time
they walk through the door.
And that's usually around four
hours, which is sometimes
difficult for people who are just
initiating the care and they want
to try it and see how it goes.
But you have to have a plan.
You can't expect them to come in
and know what to do.
You need to have a plan.
And I have found that the best way
to get consistency, get the same
caregiver, is to have a schedule.
Don't do it randomly.
Like, what are we doing this week?
Well, maybe we could use them on
Thursday and Friday of this week.
And then next week, maybe it'll be
another day.
Try and set a schedule.
You want somebody Monday,
Wednesday, and Friday from 10 a.m.
to 2 p.m.
And you'd like to have the same
person.
That way, the home care company
could schedule that person.
And you don't have to start all
over again with giving them
directions every time somebody
walks through the door on a
different day.
It's really an important piece
that people don't recognize.
And they need to set that
schedule.
You can change the schedule.
You can add on to the schedule.
But you're not always guaranteed
that you'll get that same
caregiver.
You also have the right to tell
the company, listen, this
caregiver is not a good fit for
us.
It's not personal.
They're not going to take it
personally.
They want to match you with an
appropriate caregiver that your
loved one is going to connect
with.
Really good.
So, caregivers are about $35 an
hour, I would say.
So, you have four hours each time
that they come through, $35 an
hour.
Some long-term care insurance
companies will pay for home care.
And that's a great way to use up
your elimination period if you're
going to eventually be moving to
assisted living.
But assisted living, when you're
getting somebody more and more
hours, and it's starting to cost
an awful lot,
that's when you may be thinking
about, well, okay, let's look at
assisted living.
I've done an interesting exercise
with folks who came to me when
they wanted to go to assisted
living,
and I would say, okay, it costs
$6,000 a month.
$6,000 a month?
I could keep them home and get
24-hour care for less than that.
You can't.
You take 34 times 24 hours in a
day, that's what you're looking
at.
You don't get a break because
they're sending somebody three
different shifts, eight hours a
day for 24-hour care.
But if you look at that, I'm just
using a wild number here, $6,000.
You divided that by 30 days in a
month.
You divided that by 24 hours in a
day.
It comes down to about $5 an hour
for 24-hour care, everything you
need.
Because think about it.
If you're still home, you still
have to feed everybody.
You still have to pay your bills.
You still have to pay your rent or
your mortgage.
You have all these other expenses
that you have.
You know, it might be yard work.
It might be housekeeping.
It might be all these things.
But in assisted living, that's all
there.
It's everything for $6,000 a
month.
Now, I completely recognize that
that's still an outrageous amount
that most people cannot afford.
But I think that it is important
to look at the perspective of home
care cost versus community care.
Well, it certainly seems like a
lot of additional time and costs
are absorbed when you make that
transition to assisted living.
Whereas, you not only are having
in-home care, but you're still on
the hook for home maintenance and
everything that comes with running
the household, which are not
always thought of.
So, you really sort of put it in
perspective in terms of starting
with initial parcels, getting
consistency, and then looking as
the needs grow.
When should a family sort of start
thinking about assisted care?
Once you start approaching 16
hours a day, like, is that sort of
like, oh, boy, I think we're on a
trajectory here.
We should probably start
investigating other options.
Or is it when you're locked into
24-hour-a-day and you sort of
realize this isn't a good fit
anymore, then you start asking
questions?
I think it's going to be based on
the individual and the budget that
you're working with.
When does it become that point
where it hurts, where you cannot
sustain it for very long?
Everybody's going to be different.
You know, some people can't afford
12 hours a day.
Other people, they can barely
afford four hours a day.
So, if you have the ability to go
in Medicaid, you can get Medicaid
in the home.
And Medicaid can pay for a loved
one to get care in their home.
They will pay for somebody to come
in.
Now, Medicaid in the United States
is a state program.
It's not a national program.
So, when I talk about Medicaid
here, I'm in Florida.
That's the Medicaid that I know.
And that's really important for
any of the viewers to understand.
You need to investigate what are
the rules where you live.
But in Florida, you can request
home care.
And they will send a nurse and
they will evaluate your care
needs.
I had a woman who she wanted to be
home with her husband.
She was.
But he was up all night long and
she couldn't sleep.
And Medicaid actually gave her
eight hours a day but at night so
she could sleep.
That's very important.
And Medicaid, again, in Florida,
can also allow the person who is
receiving the care
to hire their own caregiver, which
could be a family member.
And there's a process just exactly
like you would hire anybody.
You have to do the background
checks.
You have to do the fingerprinting.
You have to have a schedule.
You have to account for that
schedule.
But you would be paid minimum wage
to pay yourself to care for your
loved one.
And that's a fantastic, fantastic
benefit.
So it's not always just private
care.
Also, in the United States, the VA
has a program with our veterans
and the spouses of veterans
when they need care.
Now some of our home care
companies are getting an agreement
with the VA.
The VA would send a nurse into the
home, evaluate the system, saying
how much care that they
will allow.
And then the home care company
will bill the VA directly and you
don't have to pay anything
out of pocket.
So there are some programs, your
long-term care, your VA, and
possibly the Medicaid.
Now the VA is going to be a
national program.
So that's across the United
States.
But Medicaid is going to vary
state to state.
So recognizing that 6,000 might be
sort of a rough average number.
And I'm sure listeners might call
and say, well, in their state,
it's more, or in their
area or their community, it's
more.
But we'll stick with that sort of
6,000 example.
So there are examples of it out
there.
What's the delta?
What's the change that occurs when
you start thinking about memory
care and adding that on
top?
Well, memory care, surprisingly
enough, isn't always more
expensive than the assisted living
part.
often I like the communities that
make it an all-inclusive price.
So that if you're, now you're
going from perhaps a one-bedroom
assisted living, or you're going
from a studio assisted living, and
you're moving to memory care, it's
a smaller environment.
Much smaller.
It's just a little room.
There's no kitchenette.
There's not much in there.
And so it's not apples to apples
as far as the apartment size goes,
but you have more
caregivers there, not because
they're providing more care,
because they're providing the same
amount of care as the assisted
living side does.
But you have more people that need
that care in memory care, so they
have more caregivers.
Sometimes people feel that, well,
my mom is falling all the time,
and she needs more eyes
on her, so I want you to move her
to memory care.
It doesn't work that way.
You must have a diagnosis of some
sort of cognitive impairment.
It doesn't have to say
specifically what kind.
It could just say mild cognitive
impairment or just a broad
dementia, not a specific type.
But when it's all-inclusive, if
you're looking at assisted living
with a studio apartment where
you're now adding on the care
fees, that could start creeping up
and up and up and up as they're
needing more attention.
But by moving to memory care, if
they need more direction, it may
be less to move to memory
care than it is to assisted living
with a higher care fee cost.
And so if we're starting with
assisted living at $6,000 and we
have to add on those extra costs
on top of the assisted living,
what are we talking about?
Are we talking a doubling up to
$12,000 a month?
No.
When I based the $6,000 a month,
it was like a studio apartment
with moderate care.
I was combining that.
But there are some places that
have no cap on what your care fees
will cost, and that
could become outrageous.
There are others that say you will
have a maximum cap of $1,500 or
$2,000.
Of added costs.
So each community is going to be a
little bit different.
But it's important to be realistic
and honest about the care needs
because I've had experiences
where families wanted to keep
their costs down.
They had to keep the costs down.
So they didn't disclose all the
care that was needed.
And if the community wasn't doing
a good assessment, they did not
ask that individual to demonstrate
what they need to have done, like
transferring in and out of chair.
The nurse comes in, she sees you
sitting in a chair and says, can
you get up and walk around
with that assistant?
Yes, I can.
No, she can't.
But if the nurse doesn't say,
would you do it for me, please?
Her care assessment and the care
needs that she attaches to that
assessment is going to make
the costs lower, but it's a big
disservice to your loved one to
undervalue what they need.
So Janice, how does a caregiver
know then when keeping someone at
home is asking more than they can
safely give?
Several things.
The number of falls.
The number of falls is big.
If I get calls from paramedics,
you know, we've had to go to this
house now six times in the last
two days.
Would you talk with the family to
see what can be done?
Because, you know, it costs
taxpayers money.
Every time we send somebody from
the emergency department, from the
ambulance company, from the police
to go to the home,
we're taking them away from other
calls that they need to be
answering, which in the end is
costing taxpayers money.
And sometimes that cost has to be
passed on to the family.
But just from the general safety
and well-being of the individual,
if they are falling a lot,
that's a good indication that you
need to be in a more secure and
supportive environment.
I also talk very often about the
ability to evacuate the home.
If they have difficulty
transferring in and out of a chair
and their bedroom is at the back
of the house
and there's a fire, can they
evacuate the house?
And if they can't, that's
something that you might want to
be thinking about.
Along that line, someone, when I
talked about this on a video that
I did, I got several comments
like,
"Oh, you'd rather have them die in
a fire in an assisted living."
Well, think about assisted
livings, the way that they're
constructed, the firewalls that
are put in there,
the safety measures, the areas of
refuge that people can go even if
they can't evacuate the building.
There are safety measures that are
much larger than we have in our
homes.
So you will be safer in an
assisted living than being in your
home if you can't evacuate.
So those are my two big ones.
Those are the two big ones.
Or wandering.
Wandering is huge.
And wandering is really a tough
subject because people want to see
something has happened.
And you don't get a warning that
somebody's going to wander.
All of a sudden, you know, you
went to take a load of laundry and
put it in the dryer and you turn
around and they're gone.
You never even heard a thing.
And it's never happened before.
And, of course, the inclination
was, "Well, it was just this one
time.
I'll do more to keep them safe."
Wandering is very, very
frightening, especially in hot,
hot weather, bad cold weather.
It could be fatal if it's not
addressed.
So if caring for someone with
dementia means you, as a
caregiver, can't sleep properly or
leave the house,
how much should that count in the
decision to move someone to care?
I think it's a big part of the
decision because you're going to
burn yourself out.
You're now isolated.
You're not taking care of your own
care needs because you can't leave
your loved one.
You may be self-medicating with
prescription drugs or
over-the-counter drugs or alcohol.
You're not caring for yourself.
You're not getting the
socialization that we all need,
including your loved one, even if
they don't want to go out and
things aren't happening.
It's important.
And that's why it's important to
bring caregivers in to support you
through this so that your loved
one becomes accustomed to somebody
else coming into the home and
providing the care.
Because if you wait until now you
realize, I can never leave this
house and my mother refuses to
have anybody come in, you may have
reached that point of no return.
So introduce that early if at all
possible so they get used to that.
Also, by bringing somebody into
the home that they're accustomed
to, what if something happens to
the caregiver?
What if they're, you know, not
there all the time and something
has happened to the caregiver?
How do we get care to this
individual quickly?
If you have an agreement with a
home care company, it's one phone
call.
They've already done the
assessments.
They already have all your medical
information.
They can step right in and keep
your loved one safe until a
longer-term plan can be put into
place.
Yeah, things happen to caregivers
too.
They do.
You're absolutely right.
But to your point, really
important, I think, that you
emphasized at the beginning is
create a schedule so that there's
some built-in consistency as you
initiate and engage with a new
caregiver, care provider from the
outside of the home so that your
loved one gets used to them.
So if things do wrap up, then
we're in a much better position.
Exactly.
Who should help a family work out
exactly what level of care, let's
say, their parent needs?
Well, that's what I do through my
business is I walk people through
this.
I meet with them either on the
phone or in person, and we talk
about what are the care needs.
For instance, if your loved one
has Parkinson's, you want to find
a home care company that
specializes in Parkinson's.
They understand that.
There are different niches that
some home care companies have that
others don't.
And when you work with an advocate
like myself who understands all
these differences in the
community, or if it's not a
community that I'm familiar with,
the questions you need to be
asking when you're making some
phone calls to get this
information so you know the
important questions to ask.
That's why I do what I do so that
whether it's home care or it's
assisted living, memory care,
independent living, rehab,
hospice, I know them all.
So by talking with the individual,
finding out their care needs,
finding out their budget, finding
out how long you're going to need
this, it all is an important part
of making a good, confident
decision that you can't make on
your own.
You really cannot make that great
of a confident decision without
having all of the unbiased facts.
What about the caregiver's needs
and what the caregiver's going
through?
Do you take an inventory of what
caregiving is like for the
individual who's been trying to do
it all themselves at home?
It's so difficult for them.
And I know that the hardest thing
that we can say to a caregiver is
you have to take time for yourself
and you have to do this and you
need to do that.
Nobody who's a full-time caregiver
needs one more person telling them
what they need to do to care for
themselves.
And there is no good answer for
that.
There really isn't.
But sometimes the short, immediate
answer can be just taking just two
minutes to do some deep breathing
exercises, to center yourself
again.
It could be a quick meditation.
It could be a quick prayer.
It could be something that's very
quick to recenter yourself because
you don't have five minutes.
You don't have a half an hour.
You don't have any time to take a
shower yourself or to go to the
bathroom sometimes.
So small things that can just help
you to just do a reset can be so
helpful.
I also recognize how hard this is
for people to do that.
And as I mentioned, I've started
some support groups to help people
through these.
It's an online support group.
It's eight-week.
It's not really a support group.
It's very structured.
We talk about each week there's a
different subject that we talk
about because I don't value for my
own self support groups where you
go in and you leave and you think,
oh, my God, I'm not as bad as
these people.
Or you think, oh, my God, is this
what I have to look forward to?
Or you think, okay, now what?
So I designed it so I designed it
so that we have specific answers.
Okay, if I'm hearing the whole
group talk about this one issue,
let's talk about how to work
through that issue and how we
could help to make it be more
successful for you.
Sometimes it's the answer to this
one.
Sometimes it's all different
things, but there's separate
groups for those that are really
struggling with making the
decision, whatever decision it
could be, to go to assisted
living.
It could even be home care.
It's really geared towards
assisted living and memory care.
What has to happen?
How do we work through these very
intense feelings that you're going
through?
I have another program for the
adult child who has just placed a
parent.
Did I do the right thing?
Did I do it too early?
How am I going to pay for this?
How often do I visit?
Now what do I do with myself now
that I'm not a full-time
caregiver?
And I have another one for spouses
because each of these has a very
different perspective.
And the adult child can't relate
to what a spouse is dealing with.
So I keep it to very small groups,
one hour online for eight weeks.
That kind of tailoring to the
needs of the caregiver and the
caregiver experience, I think, is
really important.
And anyone listening, you should
definitely seek out that kind of
specificity when you're looking at
resources and things that can help
you navigate this.
One really important thing that
Charlotte Baila taught us recently
is the distinction between
self-care and self-preservation.
And in those moments that you
described where, you know, take a
couple of minutes to breathe or
maybe it's savor your favorite
blend of coffee, make sure it's
authentic to you as opposed to
just being something that's on the
to-do list that you saw somewhere
that's very impersonal but kind of
adds the pressure of, I got to do
this.
But it doesn't actually feel like
something that's truly part of
you.
So align the authenticity with the
time you have and the choices you
make, for sure.
Yes.
Yes.
I think that's a really great
point that a lot of people
overlook.
You know, it's not one more thing
you have to do.
You know, it's something that's
valuable to you that helps you hit
that reset button.
So when a family says keeping a
dependent parent at home is
cheaper, what are they leaving out
of the calculation, truly?
Really?
Your home insurance, your food
costs, your utility costs, your
maintenance costs.
All of these costs that add up,
you still have them when you're
getting home care.
And they do all go away when you
move to senior living, to a
community.
So is it apples to apples?
You know, if you do own your home
outright, there's no longer a
mortgage on it.
But if you're adding even those
small expenses along with $34 an
hour or more, then it can really
add up.
Whereas in assisted living, it's
all part of the package.
I think you also need to factor in
maybe a little lost productivity
at work because of the stressors
piling up around care at home or
having to miss work.
Or we always overlook the
indirect, which then become direct
expenses or providing care out of
pocket for your loved one.
Yeah.
And working, you know, it adds
stress.
Your productivity goes down
because you're constantly
thinking, what's happening at
home?
Am I going to get a phone call?
Am I going to have to leave?
And it's very stressful and it
does reduce your productivity at
work, which could prevent
promotions.
It could prevent a lot of things
happening for you in the work
environment.
A lot of these little ripple
effects that we don't really
appreciate until we're in the
midst of them.
And all of a sudden you're sitting
at work and they're giving you an
evaluation, improvement
evaluation.
And you're thinking, dear God, I'm
doing everything I can just to get
out of bed in the morning.
You know, it's a lot.
It affects everything.
Well, what's interesting is
there's some exciting research
that's starting to emerge looking
at how flexibility in the
workplace for caregivers can
actually change that dynamic
completely.
And return them to a higher level
of productivity and more
satisfaction with work and more
engagement because they have the
built-in flexibility and there
aren't all those pressures.
And it'll be interesting to see
how implementation across the
board in the workplace in
different industries might
actually turn things around for
caregivers.
So I'm really excited to see where
that's going to go.
So let's take, I'm going to pull
my accountant's pen out here and
just let's recap the numbers for
the listeners.
So, so far we've spoken about, you
know, escalating in-home care.
And once we start adding up the
hours, especially if it's a
24-hour care at home, we're
looking at between, let's say,
$840 and $1,000 a day.
Then obviously assisted living, if
we take an entry level, or as you
said, a studio of about $6,000.
Studio with care about $6,000.
With care, with $6,000 a month.
That's minimal care.
It's not a lot of care.
Yeah, so minimal entry level and
an average number.
And that can definitely go up and
beware how things do add up.
And then, again, memory care is a
different environment, but you may
have entry level costs that are
about the same, but they too can
escalate as needs go up and care
becomes more complex.
Unless it's an all-inclusive.
And that's what I like about the
all-inclusive because it's
regardless of how much their care
needs increase, you have one fee.
But there you need to have a
diagnosis of progressive cognitive
decline, to use a general term.
Yes.
And that needs to be vetted.
Okay.
So now we have a bit of
perspective on things.
You look at that $30,000, $30,000
a month for 24-hour care, if
you're looking at $1,000 a day.
$30,000 just for the care part
versus $6,000.
And then, you know, even if you
take it in half, you get 12 hours.
You're getting 24-hour care.
Somebody is there, you know, and
hopefully you're getting the
attention that you need.
You know, I do say that nobody can
love your loved one like you do.
Nobody can.
But in the senior living
communities, that's what they're
there for.
That's their job, to care for
them.
Not the love part, but the care
for them.
And they're better equipped
sometimes than you are because
they get to go home at the end of
the day.
They get to have a good night's
sleep.
They get to have a nice dinner,
relaxed.
They get to go out with their
friends.
And then they come back the next
day, and they start all over
again.
It's hard work, but they could go
home at the end of the day.
You as the caregiver at home, you
don't get that luxury.
So then, how do you tell a parent
that you can't keep caring for
them at home anymore
when you promise to them that you
would never put them in a home?
The promise that was made, most
likely, was made many, many, many
years ago,
before the parent was at this
place that they are today.
They weren't sick.
They did not appreciate the amount
of time and stress and pull on
your own health
that was going to be required of
you when they asked this of you.
So, please take that into
consideration first.
Would your parent, knowing now,
would they have asked that of you
20 years ago, 10 years ago?
I don't think that they would
have.
And even now, they may say to you,
promise me you won't put me in one
of those places,
because they're afraid of being
abandoned.
They're afraid that they're not
going to get care.
They're afraid of leaving their
home, and I understand that.
That's where they feel safe.
It's familiar to them.
But when the care has gone beyond
that, it's just too much for the
adult child or the spouse.
I say, I feel in my heart to focus
on you as the caregiver,
explaining to your parent or your
spouse,
this has just become too much for
me.
I love you so much.
But the quality of life for you
and the quality of life for myself
has now gotten to the point
where it's not a good quality of
life for either one of us.
And we need to be exploring some
other alternatives,
and that might include you going
to assisted living.
Let's talk about how that might
be.
Look, tell me what's important to
you.
Include them in the conversation
if you can.
Now, of course, if you're looking
at memory care,
you are not going to get their
permission.
You are not going to get them to
agree to do this.
It will not happen.
It might happen at 2 o'clock on
Thursday,
and you go and you make plans to
move them in Friday morning at 10
o'clock.
They've forgotten that
conversation, and now they're not
going anywhere.
So don't rely on their agreement
or their approval to do it.
But, Mom, I can no longer do this.
This is too much of a toll on my
health.
I need to find help,
and that help means that I have to
find more help for you than I can
provide.
Talk about yourself, how it's
affecting you.
Not, and not, Mom, I can't do this
anymore.
You know, in a nice, calm,
conversational way that shows how
much you love them
and how much you want to do this
for them,
but it's gone now beyond your
abilities.
Something in what you said really
struck me,
because things like guilt and
betrayal come up.
Yes.
Those feelings, and they can be
really devastating,
but ask yourself,
am I betraying the image of the
person 25 years ago
who said something about never
wanting to go into a home,
or am I betraying the person here
in front of me
with escalating needs that I can't
keep up with?
And I think that's one way of sort
of sorting things out
so that we don't find ourselves
trapped in a spiral of guilt.
It's important to put it into
perspective.
When was that promise made?
Life was very different.
I mean, if you were asking your
children,
would you want this for your
children?
So if you wouldn't want it for
your children,
it's most likely that your loved
one wouldn't want it for you
either.
So then what can a caregiver do
when they've reached their limit,
but their parent just refuses to
move?
If they are going to assisted
living,
there's really not a lot that can
be done
because they must agree to go to
assisted living.
You can't force them.
You can't, you can sign all the
paperwork as power of attorney,
but when time comes to move in,
they are perfectly entitled.
As long as they don't have any
memory impairment,
cognitive impairment,
they have the right to walk right
out that front door.
They can do it.
So what do you do?
I prefer to look at things in
stages.
Okay, mom, I know you don't want
to do this.
I think that we should try this.
Let's try this for three months.
We're going to try a community.
These are the ones that I've
looked at.
These are why I think that they
could be really good for you.
I'd like you to try this for three
months.
And at the end of three months,
then we can have a conversation.
We'll have a conversation with
your doctor.
We'll have a conversation with the
caregivers where you are.
And both of us will be included to
see what's working,
what's not working.
How can we fix it?
Is this the right thing that we
should have done?
And move from there.
Just because you make a move to
assisted living or memory care
does not mean this is your last
decision.
It does not mean it's your final
choice.
You always, always have choices.
You can move to another community.
You can move them back home.
You can move them to another
apartment.
You can move them to another part
of the community.
You have the choice to move this
as often as you want.
I don't advise that, but it's good
to know,
mom, if this is just the worst
thing ever,
we can fix it.
But I want to try this for three
months.
Would you do this for me?
Because I'm really struggling with
this
and I need to find a solution.
Will you help me help you?
You said something really
important there
that resonated with me.
It's that the places I've checked
out already
look pretty good.
But someone needed to have some
forethought
to be aware of what resources are
around
and what a couple of the perhaps
more popular places
based on word of mouth are like.
And maybe you would have visited
them on your own.
There's a lot of value and
forethought
and a little bit of quiet planning
on behalf of the caregiver.
And again, there too, it's not
betrayal
in that you've done a little bit
of homework
to know in case you need to
navigate
some decisions rather quickly,
what's actually available
and what you think might be a good
fit beforehand.
And I don't think that anyone can
do this alone
because you look at these
beautiful brochures
that have not real people.
You know, it's stock art.
People are having a wonderful
time.
They're coming off of great
exercise.
They're toasting everyone at happy
hour.
That's not what it is.
And they're going to,
the salespeople are going to tell
you
everything that they want you to
hear.
They may feel very strongly
that their community does provide
good care
and it is a good place.
But is it a good place for your
loved one?
That's what they can't promise
you.
And if you make a list of all of
these things
that are important to you,
I would say to somebody,
what are your three most important
things
when you're looking at a place?
I always heard good care,
to be safe and to be happy.
Well, those are human needs.
Those are human needs.
What do you need from the
community?
Do you want quick responsive time?
Do you want easy access to
elevators?
Do you want easy access to the
front door?
Do you want to know that they can
stay there
as their needs increase?
These are the things you have to
make a list of
and talk to the salespeople about
it.
They will do their best to give
them good care.
They will do their best to keep
them safe.
They will do their best to keep
them happy.
That's a given everywhere.
But look at these original things
and work with a professional like
myself.
In most cases, it doesn't cost
anything.
But don't use a national company
or a great big company
that doesn't really know these
communities.
It has to be somebody who is in
these communities
that know them.
that can be your advocate when you
move in
if there's a circumstance
that you can't seem to fix.
I would think asking around in
your own community
where you live,
where others have experienced
assisted living
for their loved ones to get the
real scoop,
just doing a little bit of
homework
and asking around
could also provide a lot of
information
that may be way outside the
brochures.
You know, what if siblings insist
that home care is still best?
How do you establish what they're
willing to take on
and contribute to make that
possible?
You know, good intentions only go
so far.
You know, you can have a family
meeting.
I read an article just on this the
other day.
And the daughter,
and it's usually the daughter
that's going to be tasked with the
care.
This individual had three brothers
and they all agreed,
okay, I will do this on Tuesday.
I will do this on Thursday.
I will do this on Friday.
And whenever something happened to
come,
oh, well, gosh,
the kids have a sports event.
I can't make it tomorrow.
Okay, so who's the fallback?
The daughter.
She's there.
And then the other said,
oh, I'm going to be out of town
next week on business.
I can't be there.
Who's the fall on?
The daughter.
And so the daughter,
this daughter particularly came
back and said,
okay, she kept a log
of every time that they backed out
or disappointed her
or left her, abandoned her.
And she said,
this is what I'm paying.
You gave up your right for a say
every time you cancel
on this date, this date, this
date, and this date.
Documentation.
It really, when you have something
to fall back on
that's not emotions,
that's not your personal opinion,
these are the facts right here.
On this date, on this date, on
this date.
They can't argue with that.
Data speaks for itself, doesn't
it?
It does.
And like how you said, emotions
aside,
because it can get pretty
emotional,
but at the same time,
if you can present it clear,
concise,
something that can be processed in
the moment,
I think that's really powerful.
So what can a caregiver do
when it's clear that home care
is no longer workable,
but the family just can't afford
to fund the care their loved one
needs?
How do they navigate that?
And what's a realistic starting
point
in whom to contact?
This is the one that I struggle
with the most
because the cost of senior living
is out of reach for most people
anymore.
You know, when a Social Security
check,
I talk to people all the time,
their total income is $1,600 a
month.
Where do you go?
What do you do?
The only thing really to do
is to apply for Medicaid,
to apply for government aid to
assist you.
But in the state of Florida,
it could take six to eight months.
If you're living in home
or you're already in an assisted
living community,
it could take up to eight months.
And during those eight months,
you're paying the $6,000
from somewhere, from somewhere.
And it's not retroactive.
It's not.
Medicaid is not.
Veterans Aid and Attendance
is a retroactive thing.
And that's a beautiful benefit
for our veterans,
depending upon when they served
and how long they served.
But Medicaid is not retroactive.
Oftentimes, what I will advise
families
that just, they just can't do it.
If your loved one is having
something
that's going to require going to
the hospital,
do it.
Send them to the hospital.
And hopefully they will be
admitted
and you can then move them
from the hospital to rehab.
As soon as they're in rehab,
that's when you apply for
Medicaid.
And you ask the nursing home,
will you accept them as Medicaid
pending
and help us through the Medicaid
process?
And they will,
if they have long-term beds
available.
That's the trick.
Well, that's a trick though,
but also not one where you sort of
do a drive-by at the emergency
room
and say, we can't cope anymore.
Here's our loved one.
Obviously, if they end up in
hospital
in acute care with deterioration,
that might be the opportunity
to then also say,
we're not sure we can handle this
anymore at home.
Is that what I'm understanding?
Yes.
Where we enter that conversation
piece?
Yes.
Yes.
It's very difficult to move from
home
into a nursing home,
into a long-term bed,
even if you've already been
approved
for Medicaid.
Moving in without going through
rehab,
there's a long, long wait list.
Two-year wait list
and any of the ones
that are worth their gold,
worth their weight.
But two years to wait,
if you go in through rehab,
it's much faster.
Mm-hmm.
Much faster.
That depends on the flow.
There's little things,
but the important thing is that
once you get into rehab,
start that process right away.
But they have to stay in the
rehab.
They have to stay there.
So if you start the process
and they have not accepted them
into a long-term bed Medicaid
pending
and you go home,
it's a whole different process.
Now you're back to six to eight
months.
You have to stay in the nursing
home
until you're fully approved,
which hopefully will be two to
three months.
Sounds really complex
and difficult to navigate.
It's very complex.
And from the professional side,
thinking as well,
we can't, you know,
we've witnessed what it is like
that we cannot move patients
into acute care settings
because long-term care patients
awaiting placement
are occupying the beds
and on acute care ward.
It's a very challenging dynamic
and I don't think
that knows any borders.
I think it's probably the same
in North America and Europe
and Australasia
and everywhere else.
It's a real challenge,
especially as the population's
aging
and numbers are growing.
How are we going to be able
to sort of craft the flow
around all of this?
It's all education
and I find that people
are so afraid
to even think about this subject
and talk about this subject
and educate them
because they don't.
They wait until they're
in the middle of this crisis
and then I hear,
well, now what do I do?
Well, now what's going
to happen next?
It's important
to educate yourself
well in advance
and especially
if somebody
is going into
rehab
and you fully expected
that they're going
to be going back home,
you better start
investigating
what if
they can't come home?
What if it's not safe
to bring them home?
What are we going to do?
Because your discharge,
it's going to come
out of the blue sometimes
and if you're not prepared
and you haven't addressed this
and talked with somebody
and investigated it,
it's going to be panic
and very bad decisions
are made in panic.
A lot of people worry
about that phone call
and discharge in 24 hours
but I think there are
appeals mechanisms
fortunately built
into the system
that can defer that
if really the environment
is no longer conducive.
There's always the opportunity
to appeal,
to appeal that
and you must be given
at least 72 hours
in a rehab here.
72 hours,
that's still not a lot of time
but put in that appeal
right away.
Right away.
If you feel like
I cannot possibly
make this decision now,
appeal it.
Janice,
could using a parent's savings
to pay for their care
leave their children
better off
than trying to preserve it
for an inheritance?
for many of the people
that I talk to
they want their
everything that they
want to work for
to go to their children.
They want to leave
an inheritance
to their children
and sometimes
it's the siblings
that are not involved
in the care.
What about my inheritance?
I think that's a discussion
also that should be made
as a family
well in advance.
you know
just
what are your thoughts
on this?
If I had to use
all of my savings
to provide care
for myself
how do you feel
about that
as my children?
If you knew
that you weren't
going to get
any inheritance
what are your thoughts?
Not saying anything
is right or wrong
just what are your thoughts
and how can we
talk through this?
Their care
it's just my opinion
that they've worked
you know
you worked all of your life
to take care of yourself
to enjoy life
to have the things
in life
that you need
and when your care
needs
are now
extreme
that is one of the reasons
why you saved this money
yes
could have been
in a great world
in a perfect world
that it went to your children
but life's not perfect
so
now what?
It's interesting
because there's
this whole notion
that the value
of
what you've amassed
may actually
be more valuable
at earlier stages
in
your children's lives
rather than
at the end
when there's a lump
sum inheritance
and if you think about
the indirect costs
and the actual benefits
of a bogged down caregiver
having some relief
because some of the inheritance
is being used
for
assisted living
and it actually
takes a weight
off their shoulder
they're actually
benefiting
from the inheritance
a lot earlier
a lot earlier
in their life
maybe indirectly
but
tangibly
if they could have
the forced thought
to protect that money
that was given to them
as an inheritance
or whatever
the one thing
to be very mindful
of though
is
Medicaid
anywhere
in any state
is going to have
a five year look back
so if you decide
to give your children
each of your children
$20,000
and three years later
you need to go
on Medicaid
because now
you've given
all of your savings
to your children
there's a five year look back
and the penalty
is five years
since that date
that you gave them
the money
and I was thinking
more about you
deciding
I'm using
what would have
gone as inheritance
towards my own care
and my children
will benefit
from the relief
of having to
care give
so much for me
and only have
that lump sum
at the end
when they're
maybe 20 years older
or 15 years older
and totally burned out
there might actually
be some benefits
up front
by redirecting
what was going
to be a lump sum
someday
into actually
care for the care
for the needs
of the care recipient
today
as they graduate
to assisted living
and taking on
more direct care
from hired help
yes
well
we're going to
take this through
sort of
the next step
and our model
family
that we've been
sort of following
in this
has decided
that in-home care
isn't really
working anymore
and now they have
to trust
someone else again
at the next level
of care
so
how can
a caregiver
tell
when a place
they're looking at
will deliver
the care
it promises
before they
commit to the move
I don't believe
that they can
on their own
I believe
that they need
to have
an advocate
like myself
like some
of the placement
services
that are all
across the country
but make sure
it's a local
placement service
not a national one
a local placement
service
that knows
these communities
because
that's an
unbiased
understanding
of what's going
on
they're hearing
from the families
that they have
placed in there
what is happening
they know
the ones
that
things are not
going well
or they're the
ones that hear
back from the
families
thank god
you told us
about this place
it's exactly
what we needed
you cannot
know that
you cannot
know the
quality of care
in the United
States
they have
surveys
that have
to be done
on the
assisted living
and the
surveys
are done
now
it's about
every two
years
everybody
has the
right to
ask to
see
those
surveys
were there
deficiencies
were there
complaints
does it
show the
complaints
that come
in
during the
course
of that
two
years
but it
shows
what was
done
on the
last
survey
and it's
really
it's a
little
little
information
but it's
not
enough
I can
access
the state
website
to look
and see
if there's
been a lot
of complaints
even if
they were
unsubstantiated
I can
see
okay
there's
been a lot
of complaints
in the
last year
we better
steer away
from this
community
each
community
also
has
an
ombudsman
who is
assigned
to that
and that
ombudsman's
job
is
a
government
spokesperson
to speak
on behalf
of every
resident
in that
community
so if
there is
a complaint
if there
is a
concern
the
family
can
contact
the
ombudsman
anonymous
and it
has to
come
through
as though
it's
anonymous
to the
community
and the
ombudsman
would go
into the
community
and investigate
they cannot
say who
it was
let's say
it was
for care
concerns
the
ombudsman
will go
in and
pull the
files
of three
or four
residents
your
loved
one
is in
that
three
to
four
and
they
can
look
to see
is there
a pattern
is this
substantiated
this
concern
but you
do have
a voice
through the
ombudsman
to
make sure
that your
rights are
upheld
do you have
any feedback
or from
on what's
people who
are engaged
in these
scenarios
can they
actually shift
the pendulum
away from
corporate profit
back towards
people
do they have
that power
and strength
numbers
in numbers
in your
experience
I'm not
exactly sure
how you're
asking that
question
so
if you have
an
oddbids person
who's engaged
in trying
to sort
out issues
regarding care
and quality
and other
things based
on some
anonymous
complaints
do they
are they
actually
successful
in swinging
the pendulum
back towards
aligning
care with
people as
opposed to
care with
corporate
profits
can they
move the
dial
oh yes
absolutely
they have
no allegiance
to any
corporate
portion
of this
they are
100%
dedicated
to the
individual
now the
complaint that
comes in
is not
anonymous
they do
have the
person's
name
they do
have the
family
member's
name
they do
know who
they are
going in
to represent
and they
are there
to determine
and this
is sometimes
the difficult
for families
to recognize
is it's
all based
on the
regulations
the state
regulations
for assisted
living
so was the
complaint
valid
yes
it was
absolutely
valid
did it
violate
the
regulations
no it
didn't
so it's
going to
show up
as
unsubstantiated
but it
was a
valid
complaint
and the
more
that they
can impose
fines
the more
that they're
having these
complaints
it's going
to show
up
and
it will
make an
impact
a nurse
on our
show
once
described
being
responsible
for 54
residents
overnight
what should
a family
ask about
night staffing
before
choosing a
place
well there
are two
things
first of
all if
you're
looking at
nursing
overnight
a common
error
that people
make when
they go to
visit a
community
is they
will ask
do you
have
nurses
24 hours
a day
the response
will always
be yes
we have
nurses
24 hours
a day
the correct
way to
ask that
question is
do you
have a
nurse
in the
building
24 hours
a day
oh well
no the
nurse goes
home
at about
eight o'clock
at night
and she
comes back
the next
morning
but she's
on call
if we
need her
well if
you've got
a significant
issue that
is going to
require the
care of
a nurse
you want to
make sure
that you
ask that
question
correctly
and if
they don't
you find
a community
that does
you want to
ask how
many awake
staff do
they have
at night
does their
executive director
ever come in
in the middle
of the night
to make
sure
that their
staff
is awake
that's
a really
important
thing
that a
good
executive
director
would do
is show
up at
two o'clock
in the morning
unannounced
and walk
through and
see what's
going on
when was
the last
time your
executive
director
walked through
this building
at two o'clock
in the morning
those
those are
important
questions to
ask about
overnight
the other
thing is
are the
overnight
caregivers
trained in
cpr
because
sometimes
they're not
and little
things like
that are
important to
know
can they
dispense
medications
are they
do they
know cpr
so
ask about
the overnight
staff because
it is
it's often
overlooked
imagine that
you need to
have enough
of them so
that if
someone falls
on the
floor
that there's
actually
strength in
numbers to
actually
pick them
up and
bring them
back into
bed let
alone
leaving them
on the
floor and
waiting for
outside help
to arrive
that that
is that
is a very
very important
thing do
you have a
nurse on
each or do
you have a
caregiver on
each floor
do you have
enough that
you have an
additional
caregiver that
can back
that person
up if we
need two
people to
take somebody
out of bed
to go to
the bathroom
or to get
them off the
floor
generally if
somebody has
fallen and
it's not
been
witnessed
they will
call 911
because you
don't know
if there's
been a
brain bleed
you don't
know what's
been happening
and the
right thing to
do is to
send them
out for
evaluation
do not
lift them
unless it's
a nurse
that has
the opportunity
to do an
assessment
a general
CNA or
just a
caregiver
does not
have that
ability to
do it
appropriately
so once a
family then
chooses a
care facility
what do they
need to sort
out and
organize before
move-in day
they have to
be sure
that the
facility
understands
their loved
one as
an individual
this is
what's
important
my mom
takes a
shower
every single
night before
she goes
to bed
so please
do not
try to
give her
a shower
in the
morning
she will
resist
she won't
know what's
going on
my dad
has to
eat breakfast
the minute
he wakes
up
or he's
not going
to be
happy
can you
have
something
available
for him
as soon
as he
wakes up
or my
mom
must sleep
till 10
o'clock in
the morning
do not
go in
and wake
her up
or if
you've
ever had
somebody
that's
had abuse
in their
life
or they've
had trauma
in their
life
it's very
important for
the community
to know
these things
so to
make a
list of
their
routine
who is
this person
as an
individual
and this
is what
you need
to know
in order
to make
this successful
for them
because this
is about
them
not about
your protocols
not about
your response
times
this is
my loved
one
that I'm
entrusting
to your
care
you need
to know
my loved
one
do you
think it's
easy to
know
individuals
at such
a level
if
support
personnel
are spending
and I've
heard up to
70% of
their time
on screen
entering
data for
billing purposes
and for
documentation
whilst care
is
relegated to
30% of
their time
yeah
it's very
hard
it is
very hard
but
you know
your role
has now
shifted
perhaps
as a
24 hour
caregiver
to a
24 hour
advocate
making sure
so
before a
family
actually
signs
their
loved
one
up
to
go
into
long
term
care
what
are
the
key
things
that
they
need
to
find
out
about
what
they're
going
to
actually
pay
beyond
the
monthly
quote
like
what
are
the
hidden
fees
that
can
really
catch
them
off
guard
there
should
not
be
any
hidden
fees
but
they
could
be
if
they
use
a
hairdresser
if
they
need
a
private
caregiver
for
instance
I
have
a
family
that
I'm
working
with
right
now
that
the
father
is
her
father
is
falling
all
the
time
and
the
community
does
not
have
enough
staff
they
have
a
lot
of
staff
but
they
don't
have
staff
to
be
there
to
make
sure
that
he's
hire
a
private
caregiver
as
a
sitter
to
be
there
with
him
that
would
be
an
additional
cost
well
what
is
that
cost
if
they're
zip
you're
looking
at
$34
an
hour
$35
an
hour
on
top
of
what
you're
already
paying
them
it
does
add up
it
could
be
your
medications
if
you're
if
you
are
having
if
you
have
order
medications
and
they're
being
delivered
to
the
community
and
they're
managing
the
medications
and
the
renewals
and
everything
do
they
have
a
policy
that
they're
going
to
charge
you
to
repackage
them
so
some
have
these
little
individual
packets
some
have
the
blister
packs
most
will
not
take
the
bottles
so
if
your
medication
comes
in
the
bottles
they
may
charge
you
to
send
it
to
their
pharmacy
to
get
it
repackaged
to
their
protocols
that's
a
big
one
that
a
lot
of
people
overlook
sometimes
if
you
need
transportation
beyond
say
miles
what
does
it
cost
but
other
than
that
the
other
thing
is
cost
increases
there
are
going
to
be
cost
increases
there
will
always
be
cost
increases
I
have
never
seen
heard
or
know
about
a
community
that
had
a
cap
on
how
many
care
or
price
increases
there
could
be
or
what
would
be
the
maximum
amount
any
family
would
ever
pay
and
that's
frightening
that's
frightening
so
you
could
ask
how
often
have
you
when
was
your
last
price
increase
how
much
was
it
how
much
historically
have
you
seen
price
increases
has
it
been
4%
consistently
has
it
been
random
what
kind
of
price
increases
have
you
had
and
when
was
the
last
time
that
your
managing
company
was
changed
because
if
you
get
not
just
the
internal
directors
but
the
managing
company
changing
they
could
come
in
because
investors
change
management
companies
because
they
want
to
get
more
money
so
they're
going
the
first
thing
they
may
do
is
ask
the
new
management
company
to
increase
prices
so
it's
important
to
know
how
often
that
has
occurred
for
the
community
those
are
some
really
good
questions
because
I
see
things
adding
up
here
let's
say
with
that
original
6,000
just
with
private
sitters
now
maybe
they
won't
be
there
hours
a
day
but
if
there
are
lots
of
falls
and
agitation
there
might
be
there
a
significant
amount
of
time
so
let's
say
agitation
you
know
if
you
have
somebody
that
has
very
aggressive
behaviors
in memory
care
that's
striking
out
at
other
residents
in order
to
avoid
the
day
notice
of
having
to
leave
you
know
having
a
caregiver
another
$500
a day
yeah
it's
easy
easily
but
you
know
these
are
oftentimes
stages
that
people
are
going
through
these
frequent
falls
they're
going
to
move
past
that
they
may
move
past
it
to
where
now
they
are
there
and
so
you
most
likely
will
not
be
looking
at
this
for
the
rest
of
the
time
that
they
will
be
there
it
could
be
a
few
months
which
is
devastating
financially
but
it
may
not
be
forever
okay
well
that's
actually
good
because
I
think
it
maybe
calms
down
some
of
the
fears
that
our
listeners
are
sort
of
getting
here
listening
to
how
things
are
adding
up
and
you
see
how
they
are
adding
up
and
how
they
could
but
there
may
be
transient
blips
I
think
the
other
fair
question
is
is
this
being
indexed
inflation
or
as
you
say
with
different
perspectives
and
managerial
change
it's
another
5%
here
oh
I'm
going
to
squeeze
in
an
8%
there
and
before
you
know
it
it's
not
as
originally
thought
and
it's
beyond
the
affordable
and
what a
terrible
position
all the
time
all
the
time
yes
and
does
that
automatically
mean
a
change
in
care
quality
or
is
it
just
perhaps
some
of
the
extras
in
the
environment
it
doesn't
change
the
quality
at
all
no
it
doesn't
but
the
cost
for
the
care
the
cost
for
the
food
the
cost
for
everything
is
increasing
and
it
has
to
be
adjusted
from
somewhere
you
know
going
back
to
the
sitter
one
thing
that
I
feel
is
important
is
to
be
talking
to
the
community
communicating
with
them
with
this
daughter
I
asked
her
to
go
back
to
the
nurse
on
the
memory
care
unit
and
see
if
there
was
a
pattern
when
was
this
when
was
her
dad
falling
was
he
falling
mostly
at
four
o'clock
in
the
morning
because
he
needed
to
get
up
to
go
to
the
bathroom
there's
a
pattern
so
the
first
thing
you
do
is
you
ask
them
can
you
send
a
caregiver
in
at
three
o'clock
in the
morning
every
morning
to
wake
him
up
and
take
him
to
the
bathroom
to
avoid
that
see
if
that
works
first
see
if
there's
a
conversation
that
you
can
do
again
I
come
back
to
I
always
come
back
to
this
is
an
individual
what
is
happening
with
this
individual
to
cause
this
problem
or
this
challenge
it's
not
always
a
problem
it's
just
a
challenge
you
need
to
overcome
so
if
you
could
see
patterns
if
you
could
see
something
that's
an
easy
fix
hope
you
get
the
four
hours
the
right
four
hours
you
know
look
at
the
patterns
look
at
how
often
the
call
bell
is
going
off
see
if
you
can
address
it
from
something
easy
first
so
find
breast
strokes
yes
that
makes
a lot
of
sense
actually
so
Janice
how do
you
handle
move
in
day
if
your
parent
begs
you
not
to
leave
when
you're
trying
to
go
home
you
have
to
engage
the
staff
you
have
to
let
the
staff
help
you
to
disengage
so
I
find
that
if
you
bring
them
in
prior
to
a
meal
around
you
know
a
little
early
you
go
in
ahead
of
time
you
set
up
the
room
ahead
of
time
so
that
the
day
you
bring
them
in
everything
is
in
place
and
you
come
in
if
lunch
is at
noon
come
in
at
take
them
around
show
them
around
sit
with
them
at
the
meal
and
say
I
have
to
go
now
but
I'm
going
to
be
back
and
you
nod
to
the
staff
who
is
waiting
because
you've
already
had
this
conversation
they
step
in
to
distract
the
person
while
you
leave
you
have
to
leave
you
can't
look
back
if
you
hear
them
call
your
name
you
can't
turn
around
tear
your
heart
out
it
can
tear
your
heart
out
but
it's
a
necessary
thing
got
a lot
of
experience
in the
field
what
do
caregivers
tend
to
feel
in
their
words
when
they
leave
their
parent
at
the
care
facility
for
the
first
time
like
what
does
that
handoff
feel
like
I
think
it's
the
worst
feeling
in
the
world
you
know
I
watched
a
woman
on
a
video
one
day
and
she
was
sitting
in
her
car
crying
just
sobbing
I
just
left
my
mother
in
memory
care
I
feel
like
the
worst
person
not
just
the
worst
daughter
but
the
worst
person
ever
I
feel
like
I
failed
her
I
wish
I
could
have
done
better
you
know
it's
it's
an
awful
feeling
it's
an
awful
feeling
and
right
there
is
why
I
created
these
support
groups
because
you're
not
alone
and
it's
really
important
to
know
that
you're
not
alone
that
other
people
have
experienced
the
same
exact
trauma
in
their
lives
so
surround
yourself
with
people
who
understand
and
it
may
not
be
your
best
friend
it
may
not
be
your
pastor
it
may
not
even
be
your
sister
who
else
has
gone
through
this
that
you
can
sit
and
cry
together
and
say
how
did
you
get
through
this
and
support
each
other
yeah
that
kind
of
builds
in
some
flexibility
for
letting
the
thinking
sort
of
just
sit
and
not
be
embroiled
in
just
black
and
white
alternatives
and
it's
either
this
or
that
and
I'm
horrible
for
what
I
did
and
it
just
gets
really
complex
so much
changes
in that
first
moment
whether
you're
walking
with a
horrible
feeling
in your
heart
or
in
your
car
crying
but
you
do
return
to
your
own
home
and
there's
a lot
that
happens
with
the
caregiver
after
the
move
and
there's
still
a lot
to
do
after
the
move
into
care
how
does
a
caregiver
tell
the
difference
between
the
standard
difficulties
of
adjustment
versus
a real
problem
with
the
care
being
provided
the
new
facility
they
cannot
go by
what
their
loved
one
is
telling
them
first
of
all
it's
important
to
talk
with
the
person
who
is
directly
responsible
for
whatever
issue
that
you're
being
told
by
your
parent
so
if
it's
a
care
issue
go
to
the
nurse
go
to
the
director
of
nursing
and
say
can
you
tell
me
what's
been
happening
because
this
is
what
I'm
hearing
can
you
explain
to
me
what's
happening
you
don't
go
to
one
of the
caregivers
that
you
grab
down
the
hall
and
say
why
isn't
my
mother
getting
her
medication
at
o'clock
every
night
maybe
she
is
you
know
maybe
it's
after
maybe
mom
doesn't
realize
it's
you
find
out
from
the
person
who's
responsible
for
it
if
it's
a
food
issue
go
to
the
director
of
food
if
it's
billing
go
to
the
business
office
manager
it's
not
always
the
executive
director
go
to
the
exact
person
who
is
responsible
for
that
and
then
you
can
escalate
it
from
there
if
you're
not
getting
the
answers
that
you
need
and
you're
not
seeing
the
change
that
you
what
they're
telling
you
you
could
start
there
but
don't
use
that
as
the
final
word
so
then
sometimes
it's
manipulation
too
of
course
some
patterns
don't
change
right
I
mean
there
may
have
been
a
trend
of
manipulation
for
years
while
still
caregiving
at
home
yeah
pull
that
guilt
string
so
after
a
parent
moves
into
care
Janice
how
do
you
work
out
your
own
mind
how
often
to
visit
without
feeling
like
you
have
to
be
there
just
every
day
that
is
I
think
one
of
the
biggest
questions
that
I
get
from
people
you
know
I've
had
wives
say
well
I
have
to
have
a
community
that's
really
close
because
I'm
going
to
be
there
every
day
and
I
would
say
why
do
you
have
to
be
there
every
day
well
I
have
to be
there
every
day
figure out
what's
best
for
both
of
you
as
well
because
if
you
are
there
every
day
all
day
long
it's
a
disservice
to
your
loved
one
and
to
yourself
for
what
you're
paying
for
the
the
staff
to
do
care
that
they
need
to
do
they
don't
get
to
know
how
to
do
the
care
that
your
loved
one
needs
when
they
are
experiencing
it
for
themselves
your
loved
one
may
not
engage
in
activities
because
you're
there
all
the
time
it's
not
it's
not
fair
to
them
or
to
you
or
to
the
staff
to
be
there
all
the
time
and
also
you
being
there
they
know
you're
there
and
they're
going
to
let
you
do
it
and
it's
it's
it's
going
to
it's
just
not
going
to
be
an
effective
way
to
do
it
my
feeling
is
consistency
especially
in
memory
care
because
if
you
have
your
loved
one
that
will
not
engage
in
any
activities
because
they
know
you're
going
to
show
up
every
day
and
it
could
be
two
o'clock
one
day
could
be
four
o'clock
another
day
could
maybe
not
be
the
next
day
if
you
come
every
day
right
before
lunch
and
you
have
lunch
with
them
and
you
help
them
after
lunch
and
you're
consistent
the
staff
can
know
that
they
can
say
hey
don't
forget
she's
coming
at
noon
come
and
join
the
activity
because
she's
not
going
to
be
here
for
another
two
hours
you
know
it
gives
them
they
understand
the
routine
if
your
loved
one
can
read
give
them
a
note
and
say
I
love
you
so
much
I
know
where
you
are
and
I
will
be
back
tomorrow
at
o'clock
that's
sometimes
a big
fear
for
someone
particularly
in
memory
care
does
my
wife
know
where
I
am
does
anybody
know
where
I
am
so
if
you
could
give
them
some
kind
of
reassurance
I
love
you
I
know
where
you
are
and
I
will
be
back
tomorrow
at
a.m.
and
so
when
that
person
goes
and
they're
going
to
the
staff
and
they're
upset
they'll
say
I
think
your
wife
left
you
a
note
in
your
is
it
there
and
oh
you
know
it's
amazing
what
something
so
small
as
that
with
my
mom
my
mom
had
dementia
and
she
never
remembered
who
came
to
write
their
name
the
day
that
they
came
and
leave
her
a
little
note
and
so
when
I
would
talk
to
her
I
said
hey
did
Kathy
come
to
visit
you
no
I
haven't
seen
her
well
grab
that
guest
book
see
if
her
name
is
on
there
oh
she
was
here
yesterday
why
don't
I
remember
that
you
know
that
was
usually
how
conversation
went
with
my
mom
but
but
consistency
I
think
don't
show
up
randomly
because
this
routine
and
the
flow
of
the
day
is
really
important
so
we
hear
that
residents
whose
families
visit
regularly
often
get
better
care
in
your
experience
is
that
true
well
visibility
is
important
and
engagement
with
the
staff
is
important
you
know
allowing
the
staff
to
know
that
you
see
them
as
part
of
your
team
and
you
want
to
make
this
successful
tell
them
that
you
appreciate
them
if
they
know
that
you
appreciate
them
they'll
make
the
extra
step
if
all
you
do
is
complain
about
them
they're
going
to
come
approach
the
care
with
anger
because
they
know
they're
never
going
to
make
you
happy
you
know
it's
a
relationship
that
is
established
there
not
only
between
you
know
make
sure
that
it's
a
positive
experience
and
I
think
mutual
understanding
where
everybody's
coming
from
is
so
huge
and
carving
out
that
caregiver
care
recipient
staff
relationship
that
it's
very
dynamic
and
we
need
to
appreciate
as
well
that
our
colleagues
in
allied
health
they're
going
non-stop
during
their
shift
and
it
may
not
all
unfortunately
be
patient
oriented
care
and
they
are
often
dealing
with
ratios
that
require
that
they
prioritize
and
certain
things
they
may
not
get
to
quite
as
effectively
just
in
terms
of
timeliness
but
as
you
say
looking
for
every
possible
problem
to
complain
about
may
not
actually
build
the
relationship
that'll
deliver
the
best
care
you
know
the
other
thing
that
I
do
get
asked
quite
often
is
should
I
wait
before
some
communities
have
a
protocol
that
the
loved
one
not
come
in
for
the
first
week
or
two
weeks
that
they're
admitted
usually
to
memory
care
we want
you to
stay away
for two
weeks
we want
to get
to know
your loved
one
I don't
like that
I think
again
I go back
to
you know
this is
the way
that we
work
together
and
I
don't
want
my
husband
to
feel
like
to
be
frightened
because
he
can't
find
me
you
know
if
your
loved
one
you
know
is
going
to
be
very
agitated
has
been
very
angry
with
you
call
the
nurse
and
say
I'd
like
to
come
visit
my
dad
today
is
that
a
good
idea
or
not
and
they'll
say
oh
lord
he's
having
a
really
bad
day
why
don't
you
call
us
tomorrow
that's
the
best
information
you
could
get
because
you
could
always
call
and
find
out
how
they're
doing
but
before
you
do
go
in
if
there's
been
a lot
of
agitation
call
and
see
what
do
you
think
can
I
come
in
today
and
say
oh
this
has
been
a
great
day
come
on
in
you
know
use
the
staff
also
to
gauge
when
and
if
you
should
be
visiting
it's
becoming
a bit
more
common
for
family
caregivers
to
use
monitoring
cameras
in
those
settings
and
what
should
a
family
check
before
putting
up
a
camera
in
someone's
room
first
you
have
to
check
the
company's
protocol
so
the
law
may
say
you
can
have
cameras
in
the
room
but
the
company
protocol
may
say
no
you
cannot
we
do
not
allow
cameras
or
if
there
are
cameras
you
must
post
a
door
to
say
cameras
are
in
use
usually
if
they
do
allow
cameras
there
are
some
restrictions
the
cameras
cannot
be
pointing
into
the
bathroom
and
they
cannot
be
pointing
out
the
door
so
that
it
sees
other
residents
go
by
and
most
often
you
can't
have
a
camera
if
you're
in
a
shared
room
with
an
unrelated
person
for
HIPAA
violations
so
it's
important
to
understand
the
rules
and
why
they
have
those
rules
you
know
sure
they're
going
to
be
people
that
put
the
teddy
bear
with
the
camera
on
the
thing
you
know
what
are
you
going
to
do
about
that
but
it's
good
to
be
up
front
it's
very
good
to
be
up
front
I
did
a
video
about
this
and
got
a lot
of
backlash
about
it
you
know
because
you
really
there
are
many
communities
that
will
not
allow
it
and
I
said
you
know
you
have
to
post
a
note
on
the
door
well
that
defeats
the
whole
purpose
well
maybe
you
know
maybe
it
does
are
you
looking
are
well
it
doesn't
attest
to
much
trust
up
front
that's
for
sure
some
people
might
recognize
potential
benefits
from
it
but
can
a
camera
actually
help
you
feel
comfortable
stepping
back
or
can
it
actually
backfire
and
leave
you
watching
the
room
all
day
oh
that
yes
yes
that
obsession
that
obsession
you know
you're
either
there
all
day
or
you're
watching
the
camera
all
day
that's
not
healthy
it's
not
healthy
so
somehow
you end
up
permanently
on
duty
yes
and
that
defeats
the
whole
purpose
so
what
over
time
can a
caregiver
do
if
care
fees
rise
and
needs
change
and the
original
plan
really
no
longer
works
are
you
talking
from
the
expense
perspective
just
the
big
picture
expenses
and
then
also
ability
to
support
the
care
that's
required
if
that's
going
to
a
level
that's
beyond
so
not
all
communities
can
fit
every
need
of
every
individual
their
care
may be
limited
again
your
loved
one
in
Florida
we have
different
levels
of
assisted
living
licenses
some
can
do
more
than
others
and
it's
important
to
understand
let's
say
insulin
diabetics
on
insulin
this
is a
very
big
issue
as
long
as
they
can
manage
the
insulin
on
their
own
it's
not
a
problem
but
what
happens
if
they
can't
a lot
of
places
can't
do
that
so
it's
good
to
have
that
discussion
up
front
what
is
your
stance
on
if
my
dad
can
no
longer
do
his
own
insulin
can
you
do
hand
over
hand
do
you
allow
for
any
adaptive
ways
of
doing
it
or
do
we
have
to
be
looking
for
another
community
that
can
do
it
and
if
they
say
nope
we
will
not
assist
in
any
way
that's
not
a
good
place
to
start
if
it
could
be
a
year
from
now
you're
going
to
be
facing
that
look
at
another
community
that
you
know
from
the
very
beginning
is
going
to
be
able
to
do
that
you
know
is
it
looking
at
their
care
needs
making
sure
you
have
a
discussion
you
know
this
is
the
pattern
you
know
this
is
the
decline
that
we're
seeing
at
what
point
would
our
loved
one
have
to
move
from
your
perspective
as
a
community
you
know
oftentimes
we
can
bring
in
hospice
if
somebody
is
bedridden
assisted
living
are
designed
for
someone
to
stay
there
through
the
end
of
life
but
if
they
become
bedridden
they
have
to
leave
to
go
to
a
nursing
home
unless
they're
on
hospice
if
they're
on
hospice
they
can
stay
there
because
the
state
sees
that
there
is
supplemental
care
for
them
in
place
to
make
that
happen
bed
rails
are
a
big
issue
if
your
doctor's
order
written
you
can
have
bed
rails
but
there
are
communities
that
say
no
we
do
not
allow
bed
rails
so
things
that
you
foresee
as
a
problem
in
the
future
wrapping
bandages
on
legs
if
you
have
lymphedema
weeping
wounds
can
they
manage
those
wrapping
of
the
legs
are
their
staff
allowed
to
do
that
and
if
so
for
how
long
they
could
say
well
we
can
bring
in
home
health
well
that
may
only
be
for
five
weeks
what
if
this
now
becomes
a
lifelong
thing
do
we
have
to
look
at
a
community
and
talk
about
it
as
though
it
will
happen
and
you
don't
want
to
move
so
where
do
we
look
where
do
we
start
sounds
like
some
really
important
detective
work
that
needs
to
be
done
up
front
and
probably
more
important
than
some
of
the
more
superficial
things
that
may
have
some
mass
appeal
but
don't
get
to
the
nitty
gritty
of
what
care
actually
involves
what
it
entails
and
if
the
deliverables
can
be
met
and
if
not
keep
looking
yeah
yeah
a lot
easier
to do
that work
up front
than
struggle
once
you're
already
there
and
realize
yeah
who
this
is
not
we
can't
escalate
care
here
it needs
to
we need
to
find
somewhere
else
that's
a huge
burden
it is
and I
can't tell
you how
many people
walk into
a community
they go
oh my god
this is
beautiful
this is
where my
mother
belongs
I'm
like
wait a
minute
there's
a whole
lot
more to
this
discussion
than
how
pretty
this
is
because
the
prettiest
place
could
have
the
worst
care
and
the
older
rundown
place
that
you
walk
in
you
go
oof
could
have
the
very
very
best
care
you
could
ever
hope
for
so
don't
judge
it
by the
way
it
looks
and
those
extra
more
challenging
things
that
you
need
to
interrogate
would
that
be
extra
cost
usually
or
is
that
part
of
the
scope
of
whole
care
it's
it's
part
of
the
scope
of
the
care
it's
generally
not
cost
now
if
if
you
are
not
to
the
point
that
you
know
it
could
become
it's
not
going
to
be
expensive
now
but
it
will
become
expensive
as
you
have
to
increase
the
care
needs
and
the
care
fees
so
it
could
become
more
expensive
so
to
think
of
our
family
that
you
know
we
alluded
to
a
little
bit
earlier
been
navigating
this
our
model
family
they've
gone
from
realizing
that
costs
can
really
add
up
to
between
$850
and
$1,000
a day
for
in-home
care
not to
mention
all the
indirect
costs
that are
absorbed
by the
family
caregiver
at
home
and
direct
costs
as
well
certainly
if
there's
an
ability
to
choose
a
more
all
encompassing
care
environment
like
assisted
care
living
that
can
be
definitely
more
affordable
although
there are
a range
of
opportunities
depending
on what
your
entry
point
is
of
course
you
alluded
to
a
studio
apartment
or
studio
space
approaching
$6,000
a year
of
course
that
can
go
up
with
extra
care
needed
very
good
example
about
agitation
and
needing
a
sitter
and
the
need
to
hire
out
to
private
can
really
push
things
up
in
addition
to
the
monthly
whole
fixed
cost
and
then
of
course
the
usual
changes
in
price
annually
that
can
occur
as a
proportion
of
index
and
inflation
and
perhaps
changes
in
management
you
know
if
they're
on
social
security
yeah
social
security
goes up
3%
but
their
rate
increase
is
7%
you know
it
doesn't
work
out
one of
the
things
going back
to the
caregiver
being at home
being a full-time
caregiver
and
I believe
very strongly
that
everyone
everyone who is a
full-time caregiver
they're responsible
for someone who
completely depends
on them
they must
have
what is
called
to
often
as a
2am
plan
what
happens
if you
have a
heart
attack
at 2
o'clock
in the
morning
and you
have to
go to
the
hospital
what
happens
to
your
loved
one
who
are
we
going
to
get
to
step
in
to
care
for
that
if
you
have
to
go
get
a
surgical
procedure
what's
the
plan
if
we
need
to
get
somebody
in
here
immediately
immediately
who
do
we
call
what
do
we
do
what
services
are
put
into
place
so
anyone
who's
a
caregiver
I
encourage
them
to
sit
down
and
figure
out
a
2am
plan
what
are
you
going
to
do
where
are
your
important
documents
that
are
going
to
be
needed
where
is
your
medication
list
where
are
all
of
these
things
so
that
you
can
be
you
can
be
prepared
somebody
can
easily
step
in
so
before
we
wrap
up
today
we
followed
our
model
family
going
through
this
process
from
thinking
about
it
at
home
and
wondering
about
in
home
care
and
seeing
that
escalate
and
making
a
move
to
assisted
living
but
I'd
like
to
go
over
the
numbers
one
more
time
so
for
that
family
who's
considering
escalating
in
home
care
where
it
gets
to
the
point
where
they
need
hour
care
at
and
there's
also
the
cost
of
maintaining
the
household
and
the
indirect
costs
absorbed
by
for
example
absenteeism
from work
on behalf
of the
caregiver
and lost
productivity
and other
costs
out of
etc
but
looking
at
the
numbers
from
what
I'm
seeing
here
adding
up
those
costs
we're
looking
at
roughly
$300
to
$305
thousand
per
year
just
for
direct
care
not
to
mention
the
household
now
the
example
you gave
of
assisted
which
would
be
sort
of
the
equivalent
of
a
studio
space
in
an
assisted
community
with
some
discretionary
spending
as well
and perhaps
some
extra
costs
related
to
pharmacy
and some
other
things
we might
be looking
at about
$6,500
a month
so that
comes out
roughly
to about
$78,000
to $80,000
per year
both big
numbers
but very
different
those are big
numbers but
the contrast
between
in-home
and assisted
is definitely
large
and granted
there can
be some
real changes
in the
assisted
living
costs
just as a
function of
management
and indexing
costs
and perhaps
some extra
costs needed
which may be
temporary
to overcome
a brief
obstacle
in care
for example
if there's a
period of agitation
where people
need to
or they've
recovered
from surgery
or I don't
know what
but something
along the lines
where we need
to drop in
some extra
care
you may
have
concentrated
periods
of a couple
of months
where care
costs go up
a bit
and then they
return back
but I'm
taken away
or taken
aback by
the large
costs
differences
between
what can be
done at home
especially as
care escalates
obviously those
costs are less
the less
formal care
you need to
hire at home
but the
mere thought
of keeping
someone at
home
is the
way to go
because it's
so affordable
may not
hold water
financially
right
right
if there's
nobody to
do it
yes
I think
what's really
important to
remember is
that the
cost the
incremental
cost in
home can
be so
forbidding
and that
you know
the goodness
of the heart
may still
be overrun
by the
insurmountable
cost of
caregiving
at home
the emotional
cost the
physical cost
the financial
cost all
of that
yes
and you
know we
we've had
guests from
the ARP
here we've
had one of
the experts
from the
group Amy
Goyer who
spoke very
candidly about
her experience
navigating
providing
incremental
in-home
care and
it can
lead to
financial
ruin
yes
well
with that
in mind
before we
go let's
bring it
back to
the caregiver
for our
last question
I'd like to
explore with
you
what would
you say
to a
caregiver
who feels
horribly
guilty
because life
is easier
after their
loved one
moves into
care
although I
know that
it's a
natural
response
to feel
guilty
I always
come back
to allowing
yourself the
grace of
knowing in
your heart
that you
did what
was in
their best
interest
not in
your best
interest
but in
their best
interest
that it
was what
at the
end of
the day
their care
their safety
is of
paramount
importance
as well as
your own
health
to allow
yourself
the grace
to forgive
yourself
for doing
what needed
to be done
as difficult
as it is
as long
as you're
doing it
from a
selfless
perspective
you're going
to feel
guilty
but allow
yourself
to know
that it
was the
right thing
to do
and that
community
might not
be the
right thing
to right
place
but all
of these
things
can be
fixed
Janice
I'd like
to thank
you for
joining us
today
you brought
so much
perspective
to the
conversation
and some
really sound
advice
for a lot
of listeners
both today
and listeners
to be
who have
caregiving
around the
corner
waiting for
them
look forward
to speaking
again
and
catching
up
as you
are
certainly
a friend
of the
podcast
and
that wraps
up this
episode
folks
we'll see
you again
next time
thank you
very much
thank you
Janice
thanks for
helping us
work through
this today
one thing
I'm taking
away is
that
caregivers
limits
have to
count
in this
decision
too
and moving
someone
into care
doesn't
mean
stepping
out of
their
life
if this
conversation
helped
please
follow
or subscribe
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podcast
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thank you for listening and we'll
see you next time
Before we wrap up
Before we wrap up
Before we wrap up
Before we wrap up
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 you're
not a substitute for professional
medical advice care 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
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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
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necessarily reflect any
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part of or have worked with
We've been part of in the past
this podcast is an independent
production it's not tied to any
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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