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The cost & courage of caring - stories that spark resilience.
Welcome to this week's episode of
the Caregiver's Podcast.
I'm your host, Dr.
Mark Ropaleski, and you can call
me Dr.
Mark.
Every week, families across North
America face some version of the
same call.
Your parents being discharged,
care at home is no longer working,
and you need to figure out what
happens next.
Most people are completely
unprepared for that moment.
They do not know the language,
they don't know the landscape,
they do not know the system.
They don't even often realize how
much emotion, money, family
tension is already tied up in that
decision.
Today's guest, Janice Martin, has
spent years inside this world,
first working in senior living and
now helping families navigate the
realities of assisted living and
long-term care.
She's also the author of a highly
acclaimed book, The Complete Guide
to Assisted Living.
Today's conversation is about what
really happens when a family
reaches that point, what choices
they face, what mistakes to avoid,
and how to think clearly in one of
the hardest transitions many
families ever go through.
And before we begin, please
subscribe to the Caregiver's
Podcast on Apple, Spotify, or
wherever you listen.
Leave us a review, share an
episode with someone who you think
might benefit from it.
It's free, and it's the best thing
you can do to help support the
show.
Janice Martin, so great to have
you on the Caregiver's Podcast
today.
A warm welcome from Kingston,
Ontario, Canada.
Thank you so much.
I'm really glad to be here.
I appreciate the opportunity.
Great.
Well, let's dive in in our usual
tradition and tell us, from your
experience, when a family calls
you
and they just no longer can safely
take care of their older parent in
the home,
what's usually just happened in
those moments?
And how long has the crisis
typically been building before
that moment when you get the call?
Well, it depends on where the
adult children are, because if
they're out of town, it's not
until
they come and they visit that they
realize that mom and dad have been
telling them, oh, I'm fine,
I'm fine, all along, and they have
nothing to gauge that by.
So when they do get to town, all
of a sudden, okay, we're here for
the weekend.
We got to do something.
And so we hit it in high gear in
those opportunities.
And they're the ones that I want
to avoid as much as possible.
The ones that are in the area,
they live in the area, they see
their parents.
Usually there's been a number of
falls or there has been a decline
or they've, a lot of times
they've wound up in the hospital.
Something has happened.
Now they're going to rehab.
We don't think she can come back
home.
What are we going to do?
So, you know, it's either really
chaotic or it gives us a little
bit of breathing time.
So when you say the ones that you
want to avoid, you mean you try to
make sure that those urgent
sort of catastrophic realizations
are least represented in your
practice and that hopefully people
have
a bit of an opportunity to weigh
in on the situation maybe as it's
involving as opposed to having
that cold realization one weekend
where, oh my God, this can't go
on.
Yes, exactly.
And I think perhaps a way of being
successful for the children that
do live out of state is
ask more direct questions of mom
and dad instead of yes and no
questions.
Because you ask yes or no
questions, you don't know what to
gauge it with.
But if you are trying to engage
them in a conversation, you may
learn quite a bit more.
In your experience, do things in
the home change rather quickly?
And if let's say, you know, you do
have family living out of town and
you're in maybe four
times a year quarterly or maybe
even six times a year.
Is that enough to have a handle on
the pulse of things or can things
change really quickly
and then you still have those
realizations when you come in on
one of those trips that, oh boy,
something's gone wrong.
When you're visiting more
frequently like that, yes, it is a
good amount of time to be able to
really gauge the degree of the
decline.
You know, how much is it different
from last time?
But when you don't see your
parents for quite a while, it is
quite, it can be quite shocking,
quite shocking.
If you are here, you may notice,
or if you're on the phone with
them, they're more confused.
And it could be a temporary
situation.
I always tell people, let's start
with the simple stuff.
You know, how much water are they
drinking?
Are they dehydrated?
Have they been tested for a UTI?
I'm not medical, but those are the
two most common things that happen
that I get this
panic call.
She was fine last week.
Now she doesn't know anything
that's going on.
Let's start with the simple stuff.
I always remember as an internal
medicine resident that when
someone came in delirious, the
first
thing you did was check the urine
because they may be completely
asymptomatic and floridly
delirious.
So what are the clearest signs
then that when something's
happening, this isn't no longer a
rough patch at
home, but a sign that the older
parent now really needs more care
than the family can
provide safely?
I think a few good signs are more
falls, more frequent falls.
You know, that is the biggest
predictor to me of something
that's moved beyond safety
measures.
Sometimes the sheriff's department
will call me and or they will give
the individual my card
and say, you need to reach out.
You need to be thinking about
assisted living.
So those falls, especially if the
emergency people are coming more
often, it really does
need to be addressed.
And it could be the level of
confusion is increasing.
Maybe they're not eating well or
their big one, not taking their
medication appropriately.
They think they are, but they're
not.
They forgot that they took it.
They take it again.
And then they have a real problem.
Then their blood pressure drops.
You know, popularized recently has
been this whole concept of frailty
and aging.
What about when frailty emerge?
Maybe that fall hasn't happened
yet, but frailty is just emerging
before your eyes.
Is that a good early sign to act
on too?
It could be, you know, at least it
could be a good opportunity to
bring in interventions like
physical therapy or a nutritionist
or even the doctor to go over the
medications to start
from that aspect.
Again, you know, I, I, I believe
in assisted living.
I believe in the community of
assisted living and the importance
of socialization.
And if somebody is isolated,
that's not a good quality of life.
I recognize that they want to be
in their home, but that's just a
terrible, terrible quality
of life.
But, but on the other hand, I also
recognize that people want to stay
home as long as possible.
So my initial process is to let's
explore other options first.
As long as when I meet with them
initially, I do believe that
they're safe, then we can start
it that way.
It seems like that fine balance
between staying at home and
connecting with memories as
opposed
to connecting with real people
today in a, maybe a different
community than we were used
to, but one that still is much
more nurturing.
It is.
It is indeed.
I find that beyond the care and
the medication and the nutrition,
the socialization is critical.
You know, oftentimes, especially
if you have a full-time caregiver
and the caregiver now can't
leave that loved one alone and
they are so, the loved one is so
resistant to having care
in the home.
Now they're both isolated.
They never see their friends.
They never go anywhere.
And it doesn't give their friends
and others an opportunity to
intervene and say, listen,
we've noticed that you've been
really declining.
Can we talk about this?
So getting out and just finding
some joy in life just by sitting
in the dining room with
other people or sitting on the
front porch, seeing who's coming
and going, that's engagement.
And that's, that is a degree of
socialization.
Well, with all the interest and
longevity and things like that, it
always boils down to basic
principles and not necessarily the
next supplement, but human
interaction and connection is
probably
as important to a handful of extra
hacks.
Very much so.
Very much, especially if it's
someone, I just recently helped
this gentleman.
He had been married for over 60
years.
He went from living at home, being
married, and then his wife died
and he's never lived
alone.
And he was living with his
daughter briefly.
She, she recognized that he needed
to be in a social environment.
And he, in the amount of time that
he was at home with her alone, he
declined.
And then we were able to move him
to an assisted living, very close
to his daughter's house.
So she could visit often and he
has just, he's, he's, he's
blossomed.
He's finding what interests him
now.
And it's, it's a beautiful thing
to see.
Once again, a rediscovery of self.
Yes.
Now, if a family were to be told
they just have 48, maybe 72 hours
to figure things out where
an older patient or older parent
can't stay home safely or can't go
home safely, what do
they really need to sort out
first?
I mean, that, that's a pretty
dramatic scenario.
That is.
And I find that happens a lot for
folks that are in rehab because
it's all predicted.
Your stay is predicted a hundred
percent by Medicare and they'll
get a 72 hours in there.
What do you mean?
I can't go home or I can't bring
him home.
I can't care for him.
So the first order of business is
really going to be determining
what are their care needs
right now.
Let's talk about that.
That's number one, always the care
needs.
And then number two is going to
be, what is your budget?
And do you want to look at this as
a short-term stepping stone with
a, with a goal to return
home?
Or do you feel that this may be a
more long-term agreement?
And can you sustain that cost?
That's where we start off with.
And then I, I try to keep it close
to the family.
So they're not driving a lot and
trying to understand the, the
lifestyle and the, what brings
that
individual, their uniqueness to
the situation.
And then how can we match that?
Pretty urgent conversation to
start trying to have if it's never
been brought up before.
And if it's never even be, never
even had the surface of it
scratched.
Most people don't want to talk
about it.
They, they don't.
I don't need to worry about that.
I don't need to worry about that.
Now I'm going to stay in my home.
I'm going to live to be a hundred
and die in my sleep.
That's their plan.
And, uh, they're going to carry me
out of here.
Yeah.
It's, it's a wish.
It's not a plan.
So what, talk about what is
important.
And I often advise people to be
thinking about what would indicate
to them that they can no
longer stay at home alone when
they're healthy, not when they're
in the midst of all this,
but what do you feel would have to
happen to recognize that maybe we
do need to be talking
about that?
And it could be, you know, you've,
you've had multiple falls.
You've had, um, confusion.
You're not, things in the house
are not going well.
You're not taking your medications
right.
And then share that with your
loved one, share it with your
family, your children, your
neighbors.
So when they see that you get to
that point, they can begin the
conversation.
Listen, we talked about this
before, and this is what you
shared with me.
So now I feel that because I
promised you that I would help
you, this is when we need
to start talking about this and
just talking about it, allowing
yourself to have enough time
to process everything and make
good, confident decisions.
You can't do it in 72 hours.
You have to start that
conversation ahead of time, way
ahead of time.
You mentioned Medicare and maybe
just for our listeners, so we have
listeners from around
the world, um, there may be
different, you know, operatives
making those decisions in
different
places, whether you're in Canada,
the U S uh, or abroad, but is that
a medical decision?
Is it an administrative decision?
I mean, who is Medicare?
And if someone's not fit to go
yet, how does someone override
that for the sake of
a very urgent discharge to an
unprepared family?
And it's, it's awful when they're
discharged and they're not safe.
They're not safe to leave yet.
It is 100% in the United States
with Medicare predicted and
determined by the Medicare
government,
Medicare, whoever oversees it.
And not just Medicare in general,
but your specific plan that you
have.
We have advantage plans here and
advantage plans make it more cost
effective for those who
are low income or the elderly who
are on a fixed income.
It's very appealing to them, but I
do find that they get less time
because even certain,
certain advantage plans are not as
good as other ones are.
So it's important to evaluate what
your plan is because you could,
the social worker could
come into the room and say, you're
doing great.
You're going to be here another
three weeks.
Absolutely.
Don't worry about it.
And you breathe, you think, oh,
thank God I've got time to think
about it.
And that social worker could go
back to their office and literally
get a cut letter from
Medicare saying, sorry, you've got
72 hours to discharge.
So what you do, if you feel that
you are not prepared to go home,
you're not ready, is you
appeal.
You appeal to Medicare and the
social worker can help you with
that.
As well as in the hospital, the
case manager can help you with an
appeal, which will at least
buy you some time and they can't
make you leave during the appeal
process.
Well, that's good to know.
I was a bit concerned when I had
seen some of your posts talking
about this as well.
So there is a process.
Yes, there is.
And so to the families out there,
nurture the advocates in the
environment where your
loved one's staying so that if you
get that call, oh, that certainly
evens things out.
So once the family sort of is
faced with this chain of choices
and they're realizing that
care at home is just no longer
going to be safe or sustainable or
practical for that matter,
like what decisions hit them first
and what order do those choices
sort of tend to come?
Let's get into a bit more detail
here.
It's always by cost.
You know, that predicts
everything, which direction you're
going to go, because there
could be several choices that
provide great care and they're a
great fit for that individual,
but the cost is beyond their
abilities.
So then we have to go back to the
drawing board and go to plan B or
even plan C, which place
can you afford?
It is interesting in Florida that
things are very different in
assisted living.
We have different licenses for our
assisted living.
There's three licenses.
And whatever your care needs are,
you need to understand which
license can manage that level
of care, like wounds, like having
to change a bandage.
You can't be in one type of
license.
You must be in another one.
So if a family is not working with
someone like myself and they walk
into this beautiful
community and say, oh, this is
beautiful.
Number one, they don't know the
care.
And number two, they don't know
the license.
And communities, some communities,
I don't want to generalize all of
them, will over-promise
what their abilities are to care
for somebody.
And then after that individual has
been there 30 days or so, the
community could possibly come
back and say, you're beyond our
scope of care.
We have to give you 45-day notice
to leave.
And now they're starting all over
again.
I want to avoid that.
Absolutely.
So I love the upfront work.
So is there a value proposition?
Is there like a strategic way that
a family can get the most value
out of the package?
Can we understand these different
options at such a granular level?
Is there a value strategy?
There is to a degree because the
care fees are separate from the
room rate.
So the more that an individual can
do for themselves, the lower their
care fees are going to be.
So, you know, to encourage
someone, get some physical
therapy.
Let's keep you as strong as you
possibly can.
You know, try and maybe even get
your room a little bit further
from the dining room so you
have to walk further every day.
You know, little things that you
can do.
You know, if you can shower
yourself, by all means, shower
yourself.
It's going to save you money.
But likewise, I do caution people
when an assessment is done before
they move in,
please don't downplay or deny that
there are significant care needs
when there actually are.
Because when the assessment is
done, the nurse may determine, oh,
you're a low care, you know,
you're a low level of care and
your care fees are going to be X
number.
And then you're in there not very
long.
Another assessment has to be done
within 30 days.
And they realize, oh, she does
need help getting in and out of a
chair every single time.
That means we have to go to her.
Oh, I didn't realize she was
completely incontinent.
Oh, we didn't realize and on and
on.
And now your care fees go way up.
And it's not the community's fault
necessarily.
It's because it was not disclosed
appropriately.
So get the facts on the table at
the beginning to make sure.
And you avoid the shock of it,
right?
It is.
That second 30-day shock is
significant.
Because, you know, yes, come in
with some additional support.
And then after 30 days, after
you've gotten a little bit
stronger or acclimated,
reduce your care fees.
So what do families most often get
wrong when they're trying to
choose, let's say,
between home care, assisted
living, this entity called memory
care, and more advanced skilled
nursing?
They make their decisions based on
Google reviews.
And they base their decisions on
appearances.
Those are the two biggest
mistakes.
When I worked in communities as a
director of sales, 90% of the
people came in and said, oh, this
is beautiful.
I could live here.
And I'm like, you don't know
anything about the care.
You don't know anything about how
long.
You don't know that I've had 10
different executive directors in
two years.
That makes a big difference in the
quality of care that you're going
to get.
You don't know if they've had
complaints against them.
It may be beautiful, but the care
could be horrible.
And the opposite could be true.
It may not be the most glamorous
place, but the care is what's
important.
Explain to me a little bit about
memory care.
I'm not sure everybody understands
what that is and what the
translational benefits are
and what the evidence is about
that kind of next level of care.
Great question.
So memory care is a specialized
area of assisted living.
And it's for individuals.
They must have a dementia
diagnosis.
And it is secure, meaning they
cannot leave that area of the
community unescorted.
There are many people, many, many
people in general assisted living
with cognitive impairment,
many of them, and they do very
well.
They're well supported.
They can, you know, maybe need a
little direction to get to the
dining room or back to their room.
They may need some reminders,
whatever.
But memory care does not mean more
care.
And that's what's difficult for
some people to recognize.
Because I would have families
saying, my mom is falling too
often.
We want to move her to memory care
because there's more care.
Well, two things are wrong with
that statement.
First of all, your mom doesn't
have dementia.
And second of all, it doesn't mean
more care.
There may be more staff there with
eyes on them,
but it does not mean that the care
is going to be any different than
the rest of the community.
It is absolutely essential if an
individual is wandering or
elopement, they must be in memory
care.
And I find if someone has, their
cognition has declined to the
point where they are isolating
themselves in their apartment,
they can't follow directions, they
can't follow a conversation,
they're no longer being engaged
with others.
Memory care could be more
appropriate at that time.
But the disservice is to move
somebody, move all their stuff in
to assisted living, general
assisted living.
And then the next thing you know,
you're getting a call that mom is
gone.
They found her down the road at
Wawa and she doesn't know where
she is.
The community is going to be
packing her things and moving them
over to memory care immediately.
So get it right from the
beginning.
So it's not like people have extra
training in skilled sort of
cognitive management or extra
stimulation of the patient or...
Yeah, well, to a degree, yes.
There is additional training.
Everyone gets training on
dementia, but it's a little bit
more.
And then it's also more hands-on
experience, which is more
important than sitting there and
watching a video.
It is, they do have different
activities.
So the activities will include
smaller steps in the directions,
you know, not giving a big wide
directive, breaking it down into
smaller pieces.
Or it could just be music, you
know, or just be something visual.
The activities will be different.
We become sensitized to changes in
the caregiving environment
professionally, lack of resources,
lack of personnel, budget
constraints.
And in the setting of memory care,
I mean, one thing I always
remember is that patients with
dementia at the end of the day can
become agitated, a bit more
cognitively challenged, so-called
phenomenon of sundowning.
It would seem to me that's a time
where you don't want to be short
on staff because you might need to
check in on individuals or they
may call for more help.
Do staff levels parallel that
phenomenon that we witness in
dementia patients at the end of
the day?
Always have more staff.
And another reason why they do
need more staff is a lot of the
care is it needs two people, needs
two caregivers to toilet someone
or to get them changed.
It takes two people.
So especially from that aspect,
you're going to need more staff.
In Florida, we don't have the
ratio of caregiver to resident.
It's not there.
It's not in our regulations.
It simply says in Florida that
your caregivers must meet the
needs of your residents in the
community at any given time.
So it will fluctuate.
And so memory care must be staffed
higher to a higher ratio than
general assisted living because of
those needs.
Well, that's certainly reassuring
to me as a listener.
So why do so many families sort of
default to, well, we can handle
this.
We're all together.
We can handle this at home.
I mean, what are they
underestimating about the
round-the-clock needs that safe
and proper care actually demands?
The exhaustion, the stress on the
caregiver.
They underestimate that, truly.
If you don't have a good support
system, if you don't have people
stepping in to help you or to
relieve you from time to time,
The stress is enormous.
And if you get outside caregivers,
the cost can be significant.
You know, assisted living memory
care is very expensive.
But when you break it down to what
you get per hour, it's pennies to
the dollar based on in-home care
being 24 hours.
You know, the thing I hear often
is, I could get in-home care for
that amount.
No, you really can't.
It's going to be triple that for
24-hour care.
So, I guess families are faced
with all of these important
critical decisions in the moment.
But what's the most dangerous
financial assumption that families
show up with when they reach out
to you looking for help to
navigate this process?
Well, they're sometimes unaware of
resources that are available to
them.
In the United States, we have the
aid and attendance benefit that is
available to our veterans and
their surviving spouses, depending
upon what the veterans served and
where and for how long.
It must be 90 consecutive days
during a war time, with only one
of those days during the war time.
It doesn't matter where they were
except for the early days of
Vietnam.
It could be in Germany.
It could be in Wisconsin.
It could be anywhere.
So, the aid and attendance benefit
is a wonderful benefit for
assisted living and memory care.
It goes directly into the
individual's personal account, and
it can be used in any assisted
living.
And it's not too very difficult to
get it.
It's also retroactive.
The payment is retroactive to when
you apply.
So, if it takes three or four
months or longer to get approved,
you're going to get a nice big
check at once.
On the other side, there's
Medicaid, and Florida is
structured differently than most
states in the United States.
And we have the ability to protect
an individual's assets.
So, even if they have significant
assets, they can still qualify.
But Medicaid is a little more
challenging in the assisted living
world.
For nursing homes, that's one
thing.
But they're unaware that there are
things that we can do in Florida
to help with that.
And they may only call one or two
places, and they're calling the
most expensive because they're
pretty and they think, I could
live there.
And they're basing their
assumption that they all cost that
much when they don't.
So, what I'm hearing is that, for
listeners elsewhere, is that find
out what's available federally in
your country.
And I imagine there's some
state-specific benefits that may
exist across different states.
Well, Medicaid is a state benefit.
The aid and attendance is a
federal benefit.
But the Medicaid does not transfer
from state to state.
I see.
So, to listeners, find out what's
available federally in your state
or provincial or territorial
benefits.
Talk with an elder law attorney,
and they can direct you.
What's the best option for you?
So, if a family doesn't have the
money for private pay, what are
the options when facing issues
like poverty?
Like, what are the options that
exist?
And what happens to people when
there's simply not enough private
funds?
It's a lot of people.
Either the individual or extended
family, I know.
It's a lot of people.
It's probably more than not.
How do you navigate that?
Pardon me?
Sorry?
It's probably more in that
circumstance than those that can
afford, even if it's on Medicaid.
Because even on Medicaid, it
doesn't mean you can afford a
place at all.
It's up to family.
It is completely up to family.
One thing that's interesting with
the Medicaid program, I'm going to
talk about Florida because I don't
know that it's available in other
places.
But there's an option called
personal directive option that
will allow the individual to hire
a family member to stay in their
home and care for them.
That family member is treated just
like an outside employee.
They have to have a background
check and fingerprinting.
They have to report hours.
They have to report what they did.
And then they can get paid a wage
to care for their loved one.
That is tremendous.
And most people don't know that.
And I would encourage you to look
into wherever you are to see if
there's something like that
available.
Because that individual cannot
work more than eight hours.
So you may have to hire three
people to cover the different
shifts.
And you're not paying for it other
than Medicaid is paying that
individual minimum wage, at least
minimum wage.
It's nice to see the evolution of
some ongoing discussions in state
legislatures and other things that
sort of pop up on the newswire in
terms of discussions now that are
realistic about, you know,
disability, caregiver tax credits
and other types of options or some
sort of financial compensation for
time caregiving.
The other thing that I've noticed
recently, and it keeps popping up
on the grid, is that big companies
are starting to realize the value
of a caregiver who's actually able
to maintain some semblance of
health balance.
Oh, yeah.
They're more productive at work
when they're given that
flexibility to not leave under
duress and stress if they do have
to attend an appointment.
And I think it's translating into
better outcomes at the corporate
level.
So that's reassuring that
flexibility.
And I think it's going to affect a
large number of people, especially
when you're negotiating these sort
of stages where they're in that
transition between still trying to
work at home, in the home place of
the care recipient to sort of
optimize before the big decision
comes.
So take us a little bit through
what math that families really
often get wrong.
I mean, you alluded to it a little
bit earlier, but what does
around-the-clock care actually
cost compared with, let's say,
assisted living and then long-term
care?
And, like, how much money will
families often burn through going
the wrong way before they realize
there was probably a better-suited
option?
I apologize.
I got a cough.
We've got terrible allergies in
Florida right now, and I don't
want to be coughing through this.
Home care costs about $35 an hour.
And if you have 24-hour care, it's
three shifts at $35 an hour.
That comes out to over $21,000 a
month.
And you still have to provide
food.
You still have to pay your
mortgage or your rent if you still
have it.
You still have to pay all of your
insurances.
You have to pay all of your
utilities.
You have all of that on top of the
caregiver.
And hope that it's consistent.
Hope that they show up.
Likewise, in assisted living, it
is possible to get, like, a studio
apartment with a lot of care for
$5,000 or $6,000.
That comes out to about $6 an
hour.
You're getting your food.
Your utilities are cared for.
You have your maintenance right
there.
Everything is there for you.
You're not paying anything extra.
That's for 100%, 24 hours a day
that you can count on.
It is a big difference.
I do acknowledge most people
cannot afford $5,000 or $6,000.
That's still a lot of money.
But when an individual says to me,
I could stay home with 24-hour
care for less than that, it's not
realistic.
If you can't afford that, I just
encourage people not to do it on
their own.
Surround yourself with a team.
Find people that you can count on.
And don't make it, I'll call you
when I need it.
Set up a schedule with them.
Maybe so-and-so comes over on
Monday from 10 o'clock to 2
o'clock.
And you can count on them for
that.
Make it consistent because it will
be good for everybody.
You would know that you're going
to get their care and your loved
one is familiar with that setup.
You know, we're talking about
these processes and they sound so
daunting and not just the cost,
but the emotional weight of it
all.
It's true.
Do you talk to the adult child
going through this who feels that
moving their parent into assisted
living or long-term care means
that they've almost failed them or
betrayed them?
I see that with husbands, mostly.
You know, husbands do not want to
relinquish the care of their wife
because they're afraid of looking
like a failure to their children
and to their friends.
Pardon me.
And it's really very sad to see,
and they will put it off for far
too long.
You know, one of the most common
objections all of us, all of us
have heard is promise you'll never
put me in one of those places all
the time.
And what I tell people is you were
probably asked that, to make that
promise when things were way
different for the individual.
They were healthy.
They did not realize the
implication on you financially,
emotionally, physically.
And I say, would they have wanted
this for you when they asked you
to make that promise?
And most of the time it would be,
no, they would not want this of
me.
So it is a very difficult decision
to make.
What I tell people all the time is
no one, no one can love your loved
one like you do.
Nobody ever can.
But there are people that are
better equipped to care for them
than you may be.
And the biggest reason for that is
they get to go home at 5 o'clock
or 7 o'clock.
They get to have a nice dinner.
They get to get a good night's
sleep and they get rest and come
back the next day and do it.
You as a 24-hour caregiver, you
don't have that luxury.
You are on 24 hours a day.
So there are people that are
trained, even if it's a little
bit.
This is what they do.
This is they can possibly care for
your loved one in a better
capacity because they're not
exhausted.
So you mentioned that the biggest
representation is from men looking
after their wives.
But what about the children?
There's a different dynamic there,
too, because there's that level
of, well, I looked after you all
those years.
Now it's your turn to look after
me.
Is the guilt different?
Is the emotional strain different
there?
You know what I find interesting?
Many times I find that if the
relationship was strained with the
family, they're the ones that
sometimes are more on it.
If the relationship had been
mutually beneficial and
supportive, there's less of that
inclination to be afraid of
looking like a failure.
When the adult child was always
treated like they were a failure,
they are really going to feel like
they're a failure if they can't do
it.
So it may be recognizing those
feelings in yourself.
Is that what I'm feeling?
And kind of work through that.
You know, it is.
It is a very, very difficult
decision to transition somebody
that you love from their home that
they've been in.
It's very hard.
And you're going to feel guilt.
You are going to feel guilt no
matter what.
But I tell everyone it will be
just as hard next week as it will
be a year from year.
Now, it's going to be that
difficult of a decision.
So if you know the time is right,
don't put it off till, oh, we'll
wait till after Christmas.
Oh, well, we'll wait till after
his birthday.
Oh, we'll wait till after this.
You can still celebrate those
things.
But it's going to be just as
difficult of a decision.
On that same note, then how do you
help the adult child who's
carrying most of the burden of the
baseline caregiving and the
process of relocation while other
siblings sort of criticized from
the sidelines?
Maybe send a check once in a
while, but really don't step in.
It takes a lot of confidence to
overcome those situations.
You know, even if you have a lot
of siblings, it can be just as
difficult as being the only child
because you have no one.
And if you have a lot of siblings,
you've got a lot of opinions.
And if you are the one who is,
what I say, driving this bus, you
must be confident to make good
decisions and stand by your
decisions.
You don't have to make excuses for
yourself.
If you are doing things from the
love in your heart and the true
motive to make sure that your
parent is getting good care that
they deserve, you just keep
forging ahead.
And no one can argue with you
about that.
Yeah, they could argue.
Just be, you know, stand strong.
Stand strong it is.
Before a family actually admits
that they're in crisis, what does
caregiver burnout look like from
your perspective and from your
experience?
And what are the sort of early
warning signs that get missed?
Lack of sleep is big, very big.
They're not sleeping all night
because sometimes the loved one is
still sleeping in the same bed
with them and they're up and down
all night.
And the lack of sleep is going to
affect you physically.
Your immune system is going to
suffer.
Your overall health is going to
suffer.
Your cognition, your making
rational good choices is going to
suffer.
Also, caregiver burnout,
self-medication.
That's a big thing.
You know, taking, drinking too
much, taking, over-medicating
yourself because you're just
exhausted or you're just so tired
or anxious.
And isolation for yourself, not
going to the doctor for yourself.
You're taking your loved one, but
you're not addressing your own
needs.
These are all significant signs of
caregiver burnout.
And you're no longer doing the
things you used to enjoy.
So, Janice, I had this question
that's really been sort of,
there's burning a hole.
How do you get that conversation
going?
I mean, you can have environmental
events.
I think back to when my mom
decided she was done at the house,
which she had lived in for 50
years.
It took a big bunch of storms
coming through to flood the
basement.
And even, you know, thanks to a
great plan from Intact Financial,
she had great care, but her
basement was dug up for six
months, if not longer, to get it
completely refinished.
And then all of a sudden, you
know, there's different things
that pop up on the grid, which
delayed further, which delayed the
house going for sale.
But she decided, I'm done being a
homeowner.
That's good for you.
I am done with this phase.
And like, that was a nice segue.
Yeah, well, that's great.
But sometimes, I mean, you know, a
flood's not always the best thing
to count on.
Right.
But certainly a conversation can
open a floodgate.
So how do we nurture in that
conversation with our loved one,
from your experience, what are the
most productive conversational
tools or steps to take at the
beginning to just keep things
level?
The best thing is to make it as
least emotional as possible.
Deal with the facts.
And deal with it coming from the
child's perspective.
Mom, I can't sleep at night
because I know that you've been
falling a lot and I'm so afraid
for you.
I think that it might be a good
time for us to start talking about
what assisted living would look
like for you.
Simple as that.
Focus on yourself.
We all know that if somebody is
attacking us, you can't live alone
anymore.
You can't be in this house and I'm
not going back to work and think
about you lying on the floor all
day.
You are going to get nowhere with
a conversation like that.
Keep the emotion level and talk
about how this is affecting
yourself.
Seeing your loved one decline like
this to where they need care.
There's a book also, and I wish I
had the name of the author.
It's called How to Say It to
Seniors.
And it talks about the psychology
of our brain development
throughout our entire life.
And there are certain words that
should be used more readily for
seniors than you would if they
were 50 or even in their 40s.
What words to use and what words
to avoid.
And it has proven to be a very,
very valuable book for me.
In fact, when I worked in the
community, I bought a lot of
copies of it and I gave it to
families that didn't know how to
do it.
I do want to share with you that I
had a conversation with my mom.
My mom has now been gone for about
eight years.
But she was living in her home.
And my mom had had vascular
dementia.
She'd had a number of small
strokes.
She was incontinent.
She was very unbalanced on her
feet.
She walked with a walker.
And I was visiting her in her
home.
And she said, promise me, you'll
never put me in one of those
places.
I've been working in one of those
places at that point for a number
of years.
And I told her, mom, you get up
every day.
You put on your makeup.
You get dressed.
You love to go out.
You play bridge just about every
day.
You enjoy being around other
people.
You're eating okay.
You're very social.
If you decline to the point where
you do nothing but sit in your
recliner that's now urine soaked.
And you're looking at the TV and
can't change the channel because
you don't know how to change it.
If you're not eating well and you
are isolated in your home.
I love you too much to accept that
quality of life for you.
That was about me.
That was about me.
I love you too much to accept that
quality of life because it's not.
And I know it can be better.
So I will help you through this
and make sure that it's something
that you agree with.
You know.
I love you too much is so powerful
to change the selfishness
narrative that sometimes gets
tagged on to these difficult
conversations and the guilt that
ensues.
I love you too much.
It's a terrible quality of life.
It truly is.
To see your parent who's been
social now sitting alone in their
apartment.
And she could not figure out that
remote.
The other thing I look at, which
is really important, is safety.
Safety.
If the house caught on fire, would
they be able to evacuate the
house?
If their bedroom is in the back of
the house and they have to use the
walker and there's a fire in the
house, would they be able to
evacuate their house?
And if the answer is no, it's a
very important discussion to be
having.
You really outlined that well in
your book.
And we'll have the link in the
show notes.
But you really laid it out really
effectively there.
And I think it's a really
wonderful resource for families to
consult.
So we'll make sure that it's in
the notes.
When a family starts looking at
assisted living, memory care,
long-term care, whatever it may
be, you know, getting back to it,
what should they truly apprise
above just the appearance
amenities and that sales pitch?
They should be looking at state
surveys in the United States.
The state has to come in and
survey the community.
They do an inspection.
And they are looking at things
with a very fine-tooth comb.
Look at the most recent inspection
report.
What did it find?
It must be available and
accessible to anyone who asks for
it, ever.
No one should have to go look for
it.
It should be readily available.
So look to see where there are
deficiencies.
See if there is someone who can
help you to investigate if there
have been complaints made to the
state.
Not Google complaints.
Because we all know that Google
complaints, more people will
complain about a place than they
will give it kudos.
But really look at that hard data.
Also, ask how long the executive
director and the director of
nursing has been there.
And how long was the person before
them there?
Because some of these places, the
revolving door, what happens is
you get an executive director or a
director of nursing that you've
had multiple over the course of a
year, three or four over the
course of a year.
The staff becomes complacent.
Do whatever you want.
They'll be gone next week.
It happens all the time.
When the staff is there and
they've been there for a while,
there is no complacency.
They will hold them accountable.
So when you say state surveys,
other terms might be like
accreditation reports and things
like that.
Yes.
And usually they recommend
suggestions of some of high level,
some of low level.
Are you able to ask for what's
been done since the last review?
There should be a report in the
book about that.
So if there was a deficiency, they
have to prove that it was
satisfied.
So then when they're being sold on
the package, so to speak, what are
the red flags that might be
conveniently glossed over or just
sort of hidden and tried to sort
of keep out of the conversation?
Over-promising.
Just if it sounds really too good
to be true, I think it deserves
being digging a little bit deeper,
just a little bit deeper.
You know, I've also found that
it's the way you ask questions in
a visit to a community.
For instance, great example.
Most places around here or
anywhere I have been working in
the last 15 years,
they don't have nurses 24 hours a
day.
They don't.
But families come in and the
question is asked, do you have
nurses 24 hours a day?
Just like that.
The answer from the salesperson
will probably be, yes, we do.
And stop right there.
What they're not saying is, oh,
but she goes home at 10 o'clock at
night and she doesn't come back to
7 o'clock the next morning,
but we could call her if we meet
her.
That's no good if you are a
diabetic on a sliding scale and
your blood sugar is out of control
at 2 o'clock in the morning.
Yes, they could send you to the
hospital, but you need a nurse in
the building in certain
circumstances.
So the question needs to be asked,
do you have nurses in the building
24 hours a day?
You have to word the question in
such a way that you're going to
get the answer the way you need to
hear it,
not the way they want you to hear
it.
So that's an important first step.
What are the couple of the other
top two or three things to look
out for?
So nursing care and making sure
that it is as advertised.
Well, I think a very important
thing, if someone is in a
wheelchair all the time, they
cannot get in and out of bed or
anywhere without somebody
assisting them.
They can't get down the hall
unless they're in a wheelchair.
I suggest looking for a first
floor apartment because if an
evacuation is needed, how are they
going to evacuate the building?
If they're in a wheelchair, you
can't use the elevator in the case
of a fire.
I encourage people to be very
mindful of placement of the
apartment.
That's very important.
And even as far as little things,
you know, if you know that
somebody loves to sleep late,
that's important to them.
You want to make sure that there's
not a dumpster right outside their
window with the trash picking up
at four o'clock in the morning
going beep, beep, beep twice a
week.
It's going to drive them crazy and
you're not going to have a good
experience.
Looking at lifestyle and what's
important to you as an individual.
Do you like morning sun in your
apartment or do you want late sun?
I've had many people, I've stood
in the apartments with a compass.
I want a southern view.
What is this one?
I'm like, I have no idea.
So we find the apartment with a
southern view.
And hopefully you're working with
somebody who can think outside the
box a little bit.
Assuming some level of sort of
comprehensive success in that
first stage, you've had good
communication, they've consulted
the right people, and their loved
one moves into a facility.
What should the first sort of 30
to 60 days look like?
And how can a family tell that mom
or dad or whether their partner,
if it's a spouse, are actually
starting to settle in?
And what are the warning signs
that, oh, things are not
transitioning well?
For families that are not nearby,
I believe that it's very important
to have a home care come in and
follow them at least a few hours a
day for at least the first week.
Make sure that they do know their
way to the dining room, that
they're not sitting in their room
alone.
See how long it takes the call
bell to be answered.
See if they are getting their
medication on time.
Because if nobody's there to
monitor it while that community is
getting accustomed to this
individual's needs, they will fall
through the cracks.
So I try to help people to manage
that.
Some of our home care companies
have a transitional program just
for this.
You know, whether they're coming
home from the hospital to home or
moving from home to assisted
living.
They go in for just a week or two,
for maybe four hours during the
main part of the day.
Make sure that they are getting up
and dressed.
All these things are happening.
That's really important.
If you are here in the area and
you do live nearby, go in and keep
your eyes on things.
But it's also important if you
feel that something isn't being
done, validate it with the staff.
Not only the staff, but validate
it with the appropriate staff.
So if you say to mom, did you get
your medication today?
She may say, no, I haven't seen
anybody.
Don't assume she didn't.
Go ask the director of nursing,
did my mom get her meds this
morning?
Because she says she didn't.
Oh, yeah.
I was in there at 7 o'clock this
morning.
We had a conversation.
Validate it before you make
assumptions.
Because that's going to start
things off in a very bad fit.
I really like your recommendation.
It really makes sense to have some
sort of means to do a bit of an
environmental scan during that
first month or two of transition.
And as a family that perhaps is
cohesive but lives out of state,
what an opportunity cost.
I'll chip in for that kind of set
of eyes on the ground to make sure
care is well matched and your
loved one is transitioning well.
But also probably benefit in your
sleep quality too.
Oh, 100%.
You know, the first week in a
community is always the easiest,
generally, because the staff is on
board to make you welcome.
You get the red carpet when you
come in.
And then after the first week,
it's on to the next new resident.
And what just happened?
I thought I was so special.
Now nobody is coming to do
anything.
Find out if they have a resident
ambassador program as well because
they are so valuable.
These are residents that have
lived there for a while.
And they will knock on the door
and say, hey, why don't you come
sit with me at dinner tonight?
Or, hey, I'm going to go play
bunco.
Why don't you come and join me and
learn a new game?
The resident ambassadors are the
greatest asset a community can
have.
And don't just assume they have a
program as to meet the ambassadors
or at least one of the
ambassadors.
Because sometimes it's
over-promised.
So Janice, before we wind up our
discussion today, I'm thinking of
the caregivers out there listening
or maybe even families listening.
What would you say to the family
listening right now who knows that
mom or dad may need more care than
they're, even way more care than
they're trying so hard to provide
at home, but they still feel
terrified to make those first
moves to get the process of
transition going?
I would suggest that they approach
this, for instance, with spouses.
Now the spouse is yelling.
All they do is argue with one
another.
They never argued before.
And now it's constant like this.
Please consider that by allowing
someone else to assume this
enormous responsibility, to allow
somebody else to assume it, so
that you can become the spouse
again.
You can come in, you can take your
loved one for a walk, or you could
read a book, or watch TV together,
and you're not butting heads all
the time.
By allowing them to do that, it
just makes a world of difference.
Even for parent and child, become
the daughter again, become the
sister again, the spouse again.
You can change it.
I just had somebody, I moved in,
and I said to her, now what?
What are you going to do to bring
joy back into your life?
And she said, I hadn't really
thought about that.
And I said, now it's time to allow
them to.
But keep in mind, I often say this
as well, you are not giving up
care.
You are bringing in a team of
people to help you help your loved
one.
You will always be the leader of
that team.
Your voice is the most important.
If you don't agree with
medication, if you don't agree
what they're doing, you are the
leader and the advocate.
But this is your team, and I
encourage you to use them.
I think it's really a transition
in leadership.
You're not the sole provider.
You are still the leader.
It's not all on your shoulders.
Yeah.
And it's not all on your
shoulders.
And it really resonates, and it's
not the first time I've heard it.
I think back to speaking with
Jeanette Yates and Kate
Washington.
Jeanette looked after her mom for
decades, and Kate was an intense
caregiver for her ailing husband
at the time.
And Jeanette just wanted to be a
daughter again and enjoy time as a
daughter with her mom.
And I remember Kate mentioning,
geez, I felt my role as my
identity as a spouse and as a
partner just disappear, and it was
swallowed up by just the demands.
Yes.
And at this stage in life, when
we're looking at transitions, when
things are no longer safe or no
longer amenable to continuing care
at home, what a gift to be able to
actually resume that role that got
you through 40 years of marriage
or 50 years of marriage is being
the partner, being there for the
person.
Absolutely.
For the love of your life.
I would also like to, I don't know
if you know that I have the second
book, and it's called me.
It's called The Journey to
Assisted Living, Expectation
Versus Reality, because there is
this chasm between what people
think assisted living is going to
be.
No, they are not going to do
everything for you.
No, they are not going to provide
one-on-one care.
No, they are not going to do
certain things that some people
think, well, then why did I move
here?
Well, remind them, you know, this
is why, this is why you did this.
But I really felt the need for
that book, because there's just so
much information to absorb, and
there's so many emotions that even
if you do recognize the
information, you can't retain it
because there's just so much
coming at you.
So really to validate again and
just be in good communication with
the staff saying, hey, I noticed
this was happening.
Can you tell me why?
You know, conversation.
You'll definitely make sure that
most recent book is in the show
notes for sure, because I think
people need resources they can
trust.
Yes.
And, you know, with your
experience from numerous sides of
the equation and your commitments
now, the value proposition of
such, that sort of on-the-ground
knowledge transfer from your
experience to someone reading
who's going through this, and it's
never easy.
No, it's not.
It's invaluable.
I want to take this opportunity,
Janice, to thank you for being
with us today.
Thank you.
Your, the value added was
tremendous.
I hope our listeners take
something away from this.
You've really offered a lot, and
thank you.
I appreciate this very, very much.
Thank you.
Thank you.
Great.
Well, we'll be in touch, and maybe
get a chance to hear an update.
That would be great.
How things are going in the
future.
Anytime.
That wraps up this week's episode
of the Caregivers Podcast.
I'm your host, Dr.
Mark.
We'll touch base next week.
Have a good one.
So, if you're in this moment with
your own family, feeling
overwhelmed, guilty, or just
unsure of what comes next,
I hope this conversation today
brought a little clarity to a
process that can feel impossibly
heavy.
Janice, thank you for helping us
walk through not just the
logistics of this decision, but
the emotional weight of it, too.
And if this episode meant
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remind you of something important.
The conversations you hear on this
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support,
to spark reflection.
We're not a substitute for
professional medical advice, care,
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Listening to this podcast does not
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If you're facing a medical
concern, health challenge, a
mental health challenge, or a
caregiving situation that needs
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I encourage you to reach out to a
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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.
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.