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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.
Last time Janice Martin joined us,
we walked through the A to Z of
what happens when a family reaches
the point where care at home is
just no longer safe and
sustainable, and long-term care
becomes a real possibility.
But for many families, that's only
where the harder conflicts emerge.
The promise an adult child made
years earlier never to put mom or
dad into a home, it comes back.
As siblings who don't agree on
much, if anything, a caregiver
who's so depleted they are no
longer able to really think
clearly.
Today we're going to delve deeper
into the traps family fall into
when long-term care is no longer
theoretical, but a real looming
need and possibility.
Before we begin, please subscribe
to the Caregiver's Podcast on
Apple Podcasts, Spotify, or
wherever you listen.
It's free, it takes just a second,
and it's the best way to support
the show today and for the years
to come.
Janice Martin, welcome back to the
Caregiver's Podcast.
Thank you so much.
I'm so glad to be back.
We're really happy to have you
here and to be paying a visit.
We've had a really meaningful
conversation in the past, and
there's just so much more to flush
out and to give our listeners any
added tools or waypoints to help
them navigate this challenging
time when big decisions need to be
made about our loved ones and
whether they can still look after
themselves safely where they are
now and where they could
potentially go.
So, we're always in the situation
where we just hope for the best
and sometimes find ourselves
making promises we can't keep.
But Kate, from your perspective
and your experience, tell us why
that question, promise me you'll
never put me in a home, is such an
unfair promise to ask of your
loved ones when everyone is still
sort of healthy and calm.
So, that's it right there.
Those promises are made long
before there's a problem, long
before they've gotten to the stage
where they are that now they need
care.
And my question of families, when
that comment was made years and
years ago, and now today they're
faced in that situation and
they've made that promise to their
loved one,
my response is, would your loved
one have wanted this for you now?
Knowing where you are right now,
would your loved one have wanted
this for you?
Without understanding the
implication of the strain, the
mental strain, the physical
strain, the financial strain, and
you as a caregiver to not pursue
other avenues to allow the others
to help.
And only one time did I have a
daughter say, yes, my mother
wanted me to be miserable.
She always did.
So, that was the only time that
that comment backfired on me.
But most people do acknowledge,
yeah, it was a long time ago.
And the other question that I have
for them is, when was the last
time they saw assisted living?
They probably don't have
familiarity with it.
They probably are thinking of
their mother's or their
grandmother's nursing home
experience, which was terrible.
And today's assisted livings are
so much different.
You need to see it and experience
it and understand what it is like
today.
There may be some listeners today
who are just embarking on this
next phase, but haven't been asked
to promise anything yet.
But what do adult children
actually usually not understand
when they make the promise to
their elderly loved one that they
won't put them in a home?
Well, they don't understand the
difficulty of it.
They don't understand the reality
of it, you know, that this will
consume them 24-7, possibly for
years.
Can they sustain that?
Can their own health sustain it?
Can their own finances sustain it?
And can their relationships
sustain it?
Because it's difficult on the
family, the outside family as
well.
If that caregiver has a spouse or
children, it's hard on everyone.
And it's difficult to really
appreciate the reality of it.
So what would a responsible adult
child in that circumstance, when a
parent says, promise me you'll
never put me in a home, what
should they say instead of making
that promise that they may not be
able to keep?
Can you give them a safe script of
how to at least start the
answering process to that request
for a promise?
I'd like to share with you how I
approached it with my own mother.
My mother said to me one day,
promise me you'll never put me in
one of those places.
My mother was a very social woman.
She always dressed well.
She enjoyed cooking.
She played bridge.
She played mahjong.
She was out and about.
But my mother had vascular
dementia and she was incontinent.
And she had trouble now using the
remote.
And she had trouble driving and
more and more increasing trouble.
And she said to me, promise me
you'll never put me in one of
those places.
And my response was, mom, you are
a beautiful, social, active woman.
If you get to the point in your
journey that you can no longer go
to bed anymore, you spend your
entire day in your recliner, you
can't change the channel on the
TV, that recliner may be soaked
with urine.
You're not eating well.
You're not taking your medication.
Well, I love you too much to
accept that quality of life for
you because that's not the quality
of life you deserve.
And I would like to help you find
a place where you would feel
comfortable.
And, you know, it stopped her dead
in her tracks.
She said, I never thought of it
that way because that's what I
wanted for her.
Not saying you have to do this or
you can't live alone anymore.
That's not going to solve
anything.
It's really interesting.
I heard something in what you just
said.
In that, the parent said, I never
thought of it that way.
And he may not know what's in
store either.
And some of that request for the
promise may be a little innocent,
actually.
Oh, it is.
Just not being aware.
And then all of a sudden, as a
child, as someone who loves their
parent, you have that honest
conversation.
It's almost a shared educational
moment.
It sort of resets the parameters
and maybe makes for a lot safer
conversations in the future as
well.
So I believe that it's important
to include your parent in the
discussion, in the decision, in
the whole process so that they
feel that their power is not taken
away from them.
The other thing that I've learned,
if I may, is that almost everyone
exclusively that I talk to feels
like this is the final decision.
We're going to move her to an
assisted living and hope for the
best, hope it's what she wants and
hopes they can give her the care
that she needs.
And it's never a dead-end street.
You always have options.
You always have choices.
So let's try this for three
months.
That's it, because it takes about
three months to transition.
Let's try this for just three
months.
And at the end of the three
months, we'll have a conversation
together, perhaps with your
doctor, perhaps with the care team
at the assisted living, to
determine what we feel is the best
way to move forward from this
point.
Should we extend it longer or
should we look at other avenues?
So again, they don't feel like
they're trapped in this decision.
It's done in stages.
Absolutely.
Even, you know, if you say you did
a three-month stint, well, during
those three months, little tweaks
could be made in real time, once a
week, have a brief sit-down and
just sort of see how it can
accommodate a little bit more.
Yes.
That promise, getting back to it,
certainly can set the stage for a
lot of guilt and feelings of
betrayal later on among family
members who made that promise to
begin with.
How do we best avoid that?
You have to come to peace with
yourself, that you are making this
decision in your loved one's best
interest.
If it's not about you, if it's not
a selfish decision, but you know
that this is the best option to
keep them safe, to keep them
healthy, and to get them the care
that they deserve,
you must come to peace with
yourself that your parent may get
angry, and that's okay.
You know, I have found that the
more difficult relationships that
the adult child had had with the
parent, the harder it is for them
to make this decision,
because they've always been so
afraid of making their loved one
mad at them, or their loved one or
their parent always got mad at
them for everything they did, and
judge them for everything they
did.
That's a huge, huge comment to
unpack, but that whole issue of
validation and understanding about
what you may have needed once upon
a time.
And you actually still need that
level of validation now when
you're making a decision that's in
the best interest.
Yes.
And interestingly, you know, it's
not about a decision to betray a
promise or betray your loved one.
That's to realign care needs, and
you can still be very present in
the new environment, and you may
actually be more rested and more
capable of providing a quality of
life as a child, as a son, as a
daughter, as a partner in the new
arrangement than you did
struggling in the old.
Do you see that often?
Oh, yes.
I see it in myself.
I saw it in myself with my mother.
You know, my mother was very
difficult, and my mother, angry a
lot, and I had to come to peace
with my adult relationship with my
mother.
You know, let go of all of that
and focus on the relationship that
we had at the end of her life,
because that was what I was going
to remember the most.
That's what I made a conscious
decision to remember the most, was
how we were towards each other
when she did need care.
And it was a beautiful
relationship at that point, and
I'm so proud of being able to
overcome that and being afraid of
making her angry with me, because
her anger was very frightening to
me growing up.
But I had to understand that, but
I also found that it was through
honest discussions and saying,
listen, things are different now.
Things are different now than when
we had that conversation many
years ago.
Let's talk about how it's
different and how it can be
beneficial to you.
As we start thinking about making
changes in the best interests of
things like safety and well-being
of our loved one, and they need to
start thinking about greater
amounts of assisted care in their
life, the first thing that sort of
pops into one's mind is a dollar
sign.
And families start looking at
assisted living or long-term care,
and it can be pretty daunting.
It's very daunting.
And from our discussions
previously and from some of my
research, there's obviously,
whether you're in Canada, across
different provinces, or in the
States, across different states or
other parts of the world, there's
different regional rules and
regional offerings of what's
compensated for, what's provided
for, what needs to be paid for.
And is there a baseline, and maybe
we can use your example in Florida
as a baseline, and acknowledging
that there's some variability, but
is there a baseline monthly cost
that families planning this sort
of transition should be prepared
for?
Then how quickly do the numbers
escalate as needs go up over time?
Is it sort of a couple of needs
don't change or budge the needle
very much, and all of a sudden,
bang, it just takes off, and then
people panic?
I recently downloaded a report on
the cost per state in the United
States of senior living.
And I would say that the average
for a studio apartment across the
United States, an average, is
about $4,000 a month for a studio
apartment, but that does not
include care.
So you are going to have to build
on top of that.
I have found that price increases
are going to happen pretty much,
you can count on, every year.
Sometimes it's on the anniversary
date of when they moved in.
Sometimes it's the beginning of
the new year.
So that, you know, a little tip,
if you're moving in in October or
November, ask if you can be locked
into that year's pricing for the
coming year,
so you're not immediately faced
with a price increase.
Oh, that's a good tip.
The price increase, standard
average, is around 4%.
I've heard of communities having
multiple increases in one year,
increases over 10%, and that's
almost impossible for people to
maintain.
There's nothing in an agreement
that I've ever seen that indicated
that there would, first of all,
ever be a cap, because they can't,
or that there would be a maximum
percentage.
It all depends on the cost of gas,
the cost of labor, the cost of
goods.
It's passed on to the money, it's
passed on to the family, it has to
be, or the community can't sustain
it.
And it's hard to keep that in
mind.
Fun.
We're not exempt from inflation
under those circumstances.
No, no.
What are the big, sort of
momentous thresholds that
individuals cross where we
suddenly see costs of care go up?
Is it needing help to stand, or
not being able to walk certain
distances, or is it incontinence,
or wound care?
Where do we see the big jumps so
that people have an understanding
of how they'll foresee what the
base price is, and then what it
may escalate to within a very
short time?
Sometimes it starts at the very
beginning.
When an assessment is made, I
found that the greatest disservice
is when the families understate
their loved one's care needs,
because they want to keep the cost
down.
So they understate it, and then
after their loved one moves in,
and the community understands, oh,
it's a lot more than we thought
of, and they raise the rate for
the care, it's the family's
responsibility to set this right
from the very beginning.
So if your price is going to jump
quite a bit after 30 days, it's
because it wasn't disclosed
appropriately.
But you have levels of care that
range everywhere from verbal
reminders, standby assistant, full
hands-on assistants.
Each of those is going to have an
increase in the amount of care
that you're paying for.
And likewise, I've also found that
some things have nothing to do
with care.
The pendant, a call pendant.
I have had experience with
residents who press it every 10,
15 minutes.
They don't realize they're doing
it, but they're afraid.
They're afraid of being alone.
They press it, they press it, they
press it.
Every time they press it, a care
staff has to come off the floor to
go turn it off and make sure that
they are okay.
That is going to increase your
care needs.
But the best way to manage
everything is to do as much as you
possibly can for as long as you
possibly can,
because the care staff is not
there to do for you.
They're there to support you in
things that you absolutely cannot
do.
So maintain that control over that
aspect of the care cost.
So do some facilities actually do
an in-person assessment and not
just rely on the family reporting?
And would that be a better way to
have a better idea of what the
baseline costs are going to be?
In the States, we have to have a
nurse assessment, or it doesn't
have to be a nurse assessment, a
professional assessment.
I, as a director of sales, I was
able to do an assessment to see if
this person was appropriate or
not.
But what is important is to have
the nurse or the person doing the
assessment ask the individual to
demonstrate what they can do.
Because if the nurse says, can you
walk without assistance?
And the loved one says, well, yes,
I can.
And then they later find out,
well, maybe they can, but they
can't get in and out of the chair
on their own.
We have to come and transfer them.
If it's not demonstrated, it
cannot be an accurate cost.
We also have to combine that with
a doctor's form.
And the doctor's form has the
clinical information.
Are they independent of these care
things?
Do they need moderate assistance
or do they need full assistance?
And we combine those two things to
create a care plan.
And that is what the care fees are
based upon.
So we can do a lot of, a lot of
upfront interrogation of the
clinical scenario and really come
up with a pretty accurate estimate
of what it might cost.
But if a parent only has a few
years of money available for care,
does delaying the move into a care
facility actually help?
Or does it actually make things
worse when the need is finally so
obvious that you can't hold off
anymore?
You know, it's such a difficult,
it's a difficult decision to begin
with.
And the transition is difficult on
the person who is moving in.
Sometimes I've actually found that
they improve.
They blossom because now they're
on a routine.
They're getting their meds
delivered on time.
They're getting better nutrition.
They're socially engaged with
other people.
And they do better, much better.
And I would want that for anyone
that I love.
But most people are afraid that
they're just going to die.
This is what it's going to take to
make them die.
And that does not happen.
But if that does happen, it's not
because you moved your loved one
to assisted living.
It's because you waited so long.
And I encourage people not to wait
so long because the loss of their
loved one compounded with that
internal guilt.
Did I do this?
It's too great to bear.
Try and do it before you get to
that point.
So even though maybe trying to
defer the move, hold on to some of
the funds, let them get a bit more
interest or what have you, in
whatever vehicle they're sitting
in, the added decay at home may
not allow the individual to
benefit the most when they
actually enter assisted living and
have some better resources than
when they were strapped.
True, true.
And, you know, we can look at are
there financial options that are
available to the individual
through government programs or
other family contributing.
You know, if you're only looking
for a short while and there are
family members that are willing to
contribute financially, you know,
that's a good time to be looking
into those avenues.
So when you start doing that
budgeting and sort of forecasting
as a family, you've got your loved
one who needs to, you know, make a
big transition.
Can you realistically plan for a
certain X number of years or is it
just too impossible to plan for?
And then what actually happens if
the parent outlives, the loved one
outlives the money that's there in
reserve?
What happens then in real life?
Well, to address the first part of
that, how do you budget for it?
I wish I had a good answer for
that.
You know, I think that you, too
many parents want to save their
money for their children.
They want to give it to their
children and their grandchildren
so they don't disclose money that
may be available because they
don't want it to go away.
You know, if you can approach this
from, this is what you work for.
You work to provide care for
yourself so that you are not a
burden to others.
Not that anybody necessarily is a
burden to others, but that is
generally the feeling that I hear
from people.
They don't want to be a burden to
their children.
So you saved, you bought a house,
you have the assets from your
house, you have things that you
can pull from that hopefully can,
you know, be included in your
monthly income that you get
through Social Security, pensions,
investments and such.
So if you can have an honest
discussion with your children
about what you actually do have,
that's a very important thing to
do.
But what if you do run out of
money?
The number one question that I
hear is, are they going to throw
my loved one out on the street?
No, they're not.
A hospital, a rehab, a community
cannot discharge anyone without a
safe discharge plan.
However, one thing that I have
witnessed is if the loved one is
in assisted living and they have
to go to the hospital and they
have not paid their bills for a
number of months and there is no
money left, the assisted living
does not have to accept them back.
So they could say they've moved
beyond our scope of care, they've
moved beyond our abilities, and we
cannot accept this person back
around in the United States.
That individual would then
probably go to a skilled nursing
long-term bed under Medicaid, and
then they are covered that way.
Right.
You know, you brought something up
that really resonated.
So how often do adult siblings
actually end up fighting because
one sibling views the house and
the parents' assets as potentially
a source of care funding, whereas
another views them as the
inheritance?
It happens a lot.
It does.
And I think that's the thing that
makes me the most sad, is when
there's that argument, when they
don't see the value of providing
care for your parent who cared for
you for many years.
I hear it quite often.
And sometimes I hear children say
to me, an only adult child, I have
new siblings to help me through
this.
And I say, you know, there's pros
and cons to both.
If you don't have other siblings
that you have to justify
everything to or explain
everything to, that could be a
blessing.
But likewise, if you do have
multiple siblings, as long as
you're all on the same page, that
can be a blessing.
But it's a big challenge and it's
very sad when adult children do
not see it the same way.
But ultimately, if one of the
adult child is making those
financial decisions and they are
power of attorney, it is their
decision.
I could see how that could get
really challenging.
It does.
I imagine with the relationships
you form and with the kind of
support that you provide, that
there's some big questions that
are asked of you.
And what about when a parent slash
patient insists that they would
rather leave the money to their
children as opposed to spending it
on long-term care?
How do you negotiate that
conversation?
I mean, ultimately, it's their
decision.
But is there sound advice that
those individuals really need to
hear?
Well, I believe that the best
option, and again, I can only
approach my answers from the
United States.
But if the individual wants to
apply for Medicaid in the state of
Florida specifically, because
Medicaid is a state program and
every state is going to be
different.
However, Florida is structured
mostly differently from other
states.
And if you put your assets,
including your house or anything
else, into a revocable trust, not
an irrevocable trust, but that
revocable trust protects
everything that's in that so that
you can apply for Medicaid and be
accepted for Medicaid.
So even if you have hundreds and
hundreds of thousands of dollars
that you want to go to your
children, you can protect it.
But the irrevocable trust has got
to be, it can never, never be
changed.
So you have to make absolutely
certain that this is what you want
and that things will not change.
And that's very difficult to do.
Nice.
So if adult siblings then are
paying for a patient parent's
long-term care, how do they, how
do they negotiate, I mean, what
advice do you give them to
negotiate that sort of arrangement
without the family getting
completely destroyed and with
conflicts and disagreements?
So your question is if the adult
child is subsidizing the payment?
Yeah, I mean, it's tricky when you
have to, when someone is able to,
but yet perhaps others may not be
contributing as much and it just
sets the stage for potential
conflicts in the future.
Are there ways to sort of, that
you sort of counsel families and
how to have those difficult, or
those, you know, unique
conversations so that they don't
run into big conflicts later on?
I advise the initial person that
I'm talking with to be realistic,
realistic about their
expectations.
Because the expectation may be
that all of you are going to
contribute equally when that's
really not what's going to happen.
You want it to happen, you expect
it to happen, and then when it
doesn't, that individual becomes
very angry and resentful.
So have a discussion with
everyone, what is your expectation
of what you can contribute to
this?
What is your expectation?
And all have a solid understanding
of what you're going to do.
You can even write it down on
paper.
It doesn't have to be a legal
document, but something that holds
each adult child accountable for
what their promise is to their
parent.
And then you do understand.
So if that expectation is not met,
it's not because you were
unrealistic.
It is because of that other
child's failure to fulfill their
obligations.
We're going to take a short break
and hear, in the tradition of the
podcast, hear from our production
team,
who always have a couple of
illustrious questions in store for
our guests.
We'll be right back.
I'm wondering, we were just
discussing when adult siblings
can't agree that either the money
should be for inheritance or it
should be for care.
So when you're presented with a
situation where the elderly
parent, it's clear that they need
care.
You know, they've crossed every
point that indicates that they can
no longer be at home safely by
themselves.
And yet the adult siblings are in
sort of this conflict that could
go on, I guess, for weeks or
months.
Take me inside of where and how
you stand in the midst of all of
that.
Is it about waiting for them to
figure it out?
Is it about sort of like
approaching both sides of the
argument?
Is it how do you how do you
negotiate that?
Well, I try to come in as a
devil's advocate, you know, and
sometimes I do try and have a
conversation, a Zoom call with all
siblings to kind of mediate the
conversation.
But in my opinion, ultimately, if
one of those children is the power
of attorney and that the power of
attorney would be the financial
component, it is ultimately their
decision.
They have to.
That's why their parent gave them
that power to make those decisions
for them.
And sometimes you do have to go
against what the others are
saying.
And that's, you know, that could
be permanently damaging to the
sibling relationship.
But again, it comes back to do you
know in your heart that you're
making this decision in your
parents' best interest?
Is it common that people just sort
of assume that they're all on the
same page?
And then when they talk to you for
the first time, that's when the
divide seems to appear?
Is it and is it is money really
the thing that that it comes down
to?
Is it is it how often do you see
that it's it's it's it's money
that's really the divisive factor?
I don't see it really that often,
but I do see it.
Yes.
You know, you know, why does she
need a two bedroom?
Why can't she take a one bedroom
and save some money for us?
I need to I you know, I want some
inheritance.
Well, this is her decision.
This is what she wants.
You know, it's it's difficult for
families and and that again, we
all have expectations of anything
we do, how it's going to what the
result is going to be.
And when it doesn't happen, the
question is, was that my
expectation or was that me not
being realistic, knowing the
individuals that are involved?
Because our expectations are
sometimes different.
And this is so important that it
seems like it could be the
catalyst for maybe years of sort
of buried resentments and and, you
know, conflicts that go back to
childhood.
And suddenly there's this big, you
know, this big decision needs to
be made.
And is it really about what's
happening in the moment or is this
about perceived wrongs that go
back decades?
Especially if there was any kind
of abuse from the parent and the
children was like, she was never
there for me.
So, I am not going to be here for
her now.
And I do see that.
I really do see that.
The abuse, the adult children
making decisions for a loved one
who was abusive to them in any
way.
It's it's it's really tough to
make good decisions.
Thank you.
So, if I'm hearing things
correctly, and this is really
important for our listeners, is
that when there is disagreement,
the individual with the authority
to make big decisions, what
happens to mom and dad is the
person who has the power of
attorney.
And no matter how much squabbling
may ensue and how many opinions
may arise, they're they're
protected by that piece of paper.
Absolutely.
Absolutely.
Unless they're all listed in the
power of attorney papers, only one
person or sometimes two.
Sometimes it may say daughter one
and daughter two, but oftentimes
this is daughter one or in her
lack of capacity to be able to do
it.
Daughter number two can make
decisions.
So, it's it it is acknowledging
the the trust that was put on upon
them by their parent when they
were a sound mind to make
decisions in their best interest.
It comes down to that.
With the challenges of family
dynamics, Yulu, too, I could just
think of the of the of the tricky
situation.
If you had a joint POA and one
grew up as the scapegoat and one
grew up as the favorite in the
family,
you can imagine that that would be
a recipe for disaster.
Oh, yes.
It really can be.
So.
If I'm hearing things correctly
with your experience working with
hundreds of families,
it doesn't happen very often that
what happens to mom and dad is
driven by the sibling most focused
on preserving the money and the
inheritance,
but rather the other way around,
it tends to be more often still
the needs that make and shape the
final decision.
Yeah, it's the needs that shape
the decision.
Yes.
Well, that's good to know.
And that's reassuring.
It kind of gives a little bit of
faith in humanity, doesn't it?
Hopefully they come to the
decision on their own before they
before they destroy relationships.
Is being the power of attorney or
health care decision maker often a
thankless job these days?
And what kind of pressures and
blames and second guessing sort of
do individuals put on themselves
and end up carrying, you know, for
and from the rest of the family?
Usually from families, they
understand the role that they've
signed on for.
The problem that I see is when an
older adult does not have children
and they don't have anybody to
entrust this with and they ask a
friend to do it.
And that friend has no idea the
commitment, the level of the
commitment that they're making to
that individual.
And sometimes adult children don't
either.
But I see it more from people who
have no blood relation or they're
just a friend.
I'm just a neighbor.
I didn't sign up for this.
I'm 80.
I don't want to be doing this now.
You know, that kind of response.
I want to live my life.
And now I'm spending all my time,
you know, trying to figure out her
care needs and what she needs.
So it depends on who you are, what
your relationship is with that
individual.
And also, you know, I'm seeing,
I'm seeing adults or seniors in
their late 90s.
Their adult children are in their
late 70s.
And they don't have good health to
be able to do this.
They didn't realize that their
parent was going to live this long
and that they were going to be in
need of someone helping them as
well.
And now they're with this
responsibility.
Now, power of attorney papers can
always be changed at any point.
But as long as the individual who
is assigning this power is of
sound mind to do it, you know, if
it needs to be changed, it can be
changed.
It's interesting over my career,
having sat with so many patients
exploring different parts of their
well-being outside of their
immediate physical symptoms,
but how those parts of their
well-being can affect their
physical symptoms.
I'm amazed at how many of my
senior patients are actually
caregiving for friends who have
nobody.
Yes.
It's not an insignificant number
and it can be just as draining as
though you were looking after a
loved one.
I find it more draining.
Why is that?
Because they haven't had, most
often, a lifelong relationship
with this individual.
It's only been, you know, maybe,
maybe five, 10, 20 years and it's
quite eye-opening to them.
They don't really, they don't have
that longevity.
So, what happens then when an
elderly parent clearly needs more
care, refuses it flat out,
meanwhile, it's really not safe
for them to be at home.
Even as the power of attorney, can
you then enact some sort of help
for an assessment or something
that'll push the agenda in a
direction whereby actually,
for the safety of the patient,
they have to be forced into some
assisted living?
Like, do those situations arise
or?
We can't do that.
Unless the individual is going to
memory care, the person moving to
assisted living has to agree.
You cannot force them.
Memory care is a different beast
altogether.
You know, it's in a secure area
and that individual is not able to
make decisions for themselves.
But as long as somebody has the
capacity to make decisions, you
cannot force them.
But again, I go back to this is
not an all-or-nothing
conversation.
You know, listen, maybe we need to
make some modifications to the
house and we don't want you to be
here while we're doing that.
Let's go to assisted living for a
few months while we can make those
modifications and then see if it's
safe for you to come back home.
Or it could be, you know, you're
falling a lot.
Let's go to assisted living, get
some outpatient physical therapy
while they're providing the care.
And then when your therapy is
finished or you've improved, we
can have the discussion if you can
come back home.
Now, this, of course, depends on
if the house is paid for.
If you're still paying a mortgage,
that's not realistic to be able to
absorb the cost of a mortgage and
all of those fees on top of the
assisted living community.
But if you have that luxury that
you don't have to pay for your
mortgage or rent, then you do have
more options available to you.
But again, even if they've sold
their house and they have no house
to go to, there are other options.
We could look at other assisted
livings that might have more
activities for you or other
assisted livings that have a
higher level of care or cost less
or whatever could be the objection
that arises over the time that
they're there.
So, when we're looking after our
loved ones, we're not looking, you
know, their lives are not in a
vacuum.
They may carry certain habits that
have followed them over the years.
And that can include elements of
difficult personalities, alcohol
or substance dependence or
behaviors that just make placement
difficult.
How do long-term care communities
at various levels sort of assess
and handle and screen for
residents when these features
creep into the discussion?
There's a thing called resident
rights.
If a person is a diabetic and
they're living in assisted living
and they want pancakes for
breakfast and they want three
rolls with lunch and they want
cake for dessert at dinner, it is
their right to have it.
The assisted living cannot say no.
They cannot.
They can offer alternatives.
They could say, listen, I
understand, you know, that there
is some concerns about your blood
sugar.
How about having this for dessert
tonight or whatever they can do
to, you know, steer them around
that request?
Likewise, if they're an alcoholic,
if they want to drink, they can
drink.
They can absolutely drink in their
apartment in assisted living.
We cannot force them to not go
out.
If it's a doctor's orders,
sometimes you can get around it,
but not always.
So if the doctor says this person
needs to be on a low-carbohydrate
diet, you've got a greater leg to
stand on.
But the alcohol, the substance
abuse, they can still do it.
That's their right to be able to
do it.
Memory care is a different story.
You can monitor it there.
So they have it right, but what's
that line that has to be crossed
where they are inflicting harm on
themselves or other residents
because of their behaviors?
In Florida, it honestly doesn't
matter.
I had a woman that I was helping.
She moved her father, I think, oh,
no, it was her husband, to
assisted living.
He was diabetic.
His A1C, his glucose, was through
the roof.
And the response from the
community, and it was the right
response, not what we wanted to
hear.
We cannot tell him no.
So the only option that she had
was to pay for a very expensive
drug to bring his sugar levels
down.
Very expensive.
Very, very expensive.
The only option she had would be
to move him to memory care.
You have to have a diagnosis of
dementia to go to memory care.
So just because he's not
cooperating, he's making poor
decisions but doesn't have
dementia, you can't make that
move.
So just to probably have some new
listeners today, when we speak of
memory care, is that just built-in
safety mechanisms,
recognizing that people who have
trouble remembering may find
themselves in harm's way,
or is that actually a more active
care program where memory
reinforcement exercises and
there's a sort of a styling of
engaging with the individuals
that reinforces memories and or,
you know, creates opportunities to
just to work on things
cognitively.
Is that what they're paying for or
is it just vigilance to make sure
they stay safe?
So memory care is a specialized
neighborhood within an assisted
living.
It's a special part of the
building that is secure so the
individual cannot leave on their
own without an escort
because they are at risk of
elopement or also known as
wandering.
But there are different activities
that are scheduled for them.
The activities have fewer
directions involved with it.
So in general assisted living,
they may be doing something that
there are five different steps to
the directions.
Well, someone with dementia may
not be able to do that.
So the activities that they're
doing in memory care may only have
two steps and it makes them feel
more successful.
It could, there is more hands-on
care.
It's not more care, but it's, it
could be a higher level of
hands-on care to the individual
than assisted, general assisted
living is.
So memory care is assisted living.
It's just a specialized area of
assisted living.
So if an individual has wandered,
if they're at risk of walking away
on their own and not knowing where
they are,
they must be in memory care.
If they are isolated because they
can't keep up with the group or
they can't find their way to the
dining room,
memory care may be an appropriate
option for them.
But there are many people in
general assisted living who have a
degree of dementia and they're
well supported so they are
successful.
So value in that.
Oh, there is definitely value.
Yes.
Is it, is it, is it a dramatic
increase in price?
I know that some individuals are
concerned about the cost of memory
care.
Is it out of reach for many with
dementia?
It's, it's different.
So if you were in, let's say
you're in a studio apartment in
general assisted living and you
have a small kitchenette there and
you have,
you may have a private bathroom
with a shower in it.
If you move and you're paying for
care, you're paying for your room
and your care oftentimes, but not
always, memory care is all
inclusive.
The care is bundled with the room
rate.
The room is smaller.
There's no kitchenette because
they're not doing any cooking any
longer.
There may not be a shower in that
room because most people in memory
care don't take a shower on their
own.
So they may be using a shared
shower or whatever, but it's going
to be different accommodations
that are at the end of the day are
going to be the same cost as what
they were paying for a studio
apartment with care.
So we talked a little bit about,
you know, how, how things are
adapted to certain individuals who
have made choices to drink, for
example, or, um, consume different
substances, et cetera.
And, you know, these are all
adults and these are individuals
who are responsible for their
actions, but we, we've heard more
and more recently reports about,
um, consent and intimacy among our
seniors and even sexual health.
And outbreaks of sexually
transmitted infections, are these
conversations that families are
prepared to have with their loved
ones?
Like what, are mom or dad going to
suddenly start having sex again,
uh, in the care home?
I mean, it sounds blunt, but
families may not be prepared to
deal with, you know, sudden
conversations that are imposed on
them.
If there's concerns, I mean, there
are public health issues.
There's all kinds of different
layers, which we're not prepared
necessarily to explore, but they
sometimes come to the forefront.
What have you witnessed?
I have dealt with this a few times
and, you know, it comes down to
consent.
As you said, we are all adults.
They are adults.
Whether the children want to
recognize their parents' sexuality
could be their issue alone.
But if the adult is consenting to
sex and it's agreed upon by both
parties, it's their right to be
able to be intimate.
You know, the people in assisted
living, they can have folks stay
overnight.
They can, you know, go out.
They could go out to dinner.
They can have a girlfriend or a
boyfriend come and spend the night
with them.
That's perfectly fine.
But the real concern is memory
care.
And that is an extremely delicate
situation to be discussing.
But I had a really just awful
situation with a husband and wife.
His wife was in memory care.
She couldn't even verbally express
herself at all.
And he would come to visit and
essentially force her to have sex
with him while he was there.
We did not realize that.
But every time he left, she was
uncontrollably sad and agitated.
And we didn't understand why.
When we did, I had to have the
conversation with the adult
children.
Your father is not allowed to
visit your mother anymore unless
you accompany your father.
It is affecting her emotional and
physical well-being.
And we are not going to accept
that for someone who is entrusted
to our care.
So I put the decision back on the
children who were appalled at all
of this.
But they understood.
And it was an honest, you know,
discussion that had to be made.
So sometimes it's not in the
individual's best interest.
But they deserve privacy.
They do deserve privacy as long as
there is consent.
It almost sometimes strikes me
like there's a second wave of sex
ed classes that are needed for
seniors entering an environment
where suddenly, you know, they may
not have thought about it for
decades.
But there are public health
issues.
It sounds like you're talking
about the Villages, Florida, where
I am near.
And let me tell you what, that's
like an adult playground for
seniors.
Oh, we're not even going to go
there.
But it's true.
You know, sometimes when you get
older, if you find yourself that
now you don't have a spouse and
you find someone that you find
companionship with in the
community, that's very special.
You know, we all deserve to have
love and companionship and
intimacy at any point in our
lives.
I have had residents where I
worked.
They met at the community and they
got married at the community.
And it's a beautiful thing.
And I want people to know that you
can still find joy.
You can find love in assisted
living.
For the adult children, you know,
it may be difficult for them to
accept that their parent is
sexual, but they need to take a
closer look at their own lives and
themselves and what they want for
themselves when they get older.
Sounds fair to me.
Me too.
There comes a point where family
caregivers just sort of hit the
wall.
And I always wonder, how does a
family caregiver really know that
they're no longer just exhausted,
but life has become unsustainable
and they just can't meet mom or
dad's needs?
What signs do you witness in
others that really tell you that
they've crossed that line and that
big decisions need to be made or
the caregivers at risk of really
getting sick?
I just helped a woman move her
husband to memory care and he was
very advanced with his dementia.
And I was able to help her get her
husband on hospice and she was not
sleeping because her husband was
up one night.
She was absolutely as close to a
full burnout as anybody I've ever
witnessed.
And the nurse and the social
worker from hospice had an
intervention with her and said, if
you continue in this way, it will
kill you.
You must do something for your own
sake and for your husband's sake,
or he's not going to have anyone
to care for him.
And thank God somebody recognized
that and really had a good,
heartfelt conversation with her.
And it helped tremendously for her
to have an outsider's point of
view.
You know, sometimes if it's our
children telling us that, I know
what I'm doing.
I know what I'm doing.
I'm okay.
But, you know, you talked about
the effect on your physical
well-being.
When your immune system is under
stress, your body is under stress,
your immune system shuts down,
your cortisol levels off the chart
one way or the other, and your
health suffers.
What is going to happen to your
loved one if you are not taking
care of yourself?
You must.
And we put ourselves as caregivers
last, always.
I'll go to the doctor next week.
I've got to do this, or I'll take
care of it later.
I can't afford to take the time to
do it.
You know, we have here mobile
doctors who come to the house.
So you don't even have to be
housebound or whatever.
They will come to you, and you pay
the same as going to an office
visit.
So if you can't leave your loved
one for even a minute, maybe you
can bring in these services to
have the doctor meet you in your
home.
You really hit the nail on the
head there because I think there's
a fatigue that comes from being on
the go and, you know, really
having to work hard to find little
pockets of time for yourself to
keep your identity in balance as a
caregiver.
But when sleep deprivation enters
the equation, and we're not
talking about, oh, a bad night
here and there.
Oh, right.
It can get to the point of every
night predictably is a bad night,
and it will go on in perpetuity.
Yes.
That takes the physiology to the
next level.
It sure does.
And I think there's lots of good
research evidence in terms of
sleep physiology and the impact of
sleep deprivation on our
physiology that that really
becomes unsustainable and
dangerous, probably to self and
even the care of the one you love.
Sometimes I have a conversation
with the caregiver.
What would have to happen for you
to recognize that you can no
longer do this?
What do you feel is your line in
the sand?
I can't do this anymore.
And to have that conversation with
your children, with your pastor,
with your church members, somebody
that you trust, because when you
do get to that point, the natural
inclination is to say, oh, it was
just this one time.
I could just do it a little bit
longer.
I'm going to wait for X to happen.
But if you have that conversation
in advance, then that person can
come back to you and say, listen,
we talked about this.
And this is what you had shared
with me, would be the time that
you knew you had to do something.
So maybe now is the time that we
need to be talking about going to
the next step.
In the end, how do family
caregivers get past the feeling
that moving mom, dad, or their
partner into long-term care is and
was, if they're looking back, a
one-way ticket, and that it truly
betrayed their wish to die at
home?
What advice would you say to
people who are grappling with
those feelings and just knowing
that they had to facilitate the
move, but just having that gnawing
sense that they betrayed their
loved one, consume them.
What advice would you have for
them?
I always come back to prayer.
Pray on this.
You know, pray and ask for
guidance.
What is the right decision for you
to do?
And don't use your own internal
feelings to come to your
conclusion.
Listen to the voice of God.
Listen to what other people are
telling you.
prayerfully, and let it settle in
your heart so that you know that
the decision that you are making
is in your loved one's best
interest.
And if you know that you are doing
it from love because you feel that
this is the right thing to do,
hopefully at some point you can
forgive yourself for any guilt or
ill feelings that come as a result
of the move.
I couldn't think of a more
peaceful way to conclude today's
episode in that sit with yourself.
It may be prayer, it may be a form
of meditation that's unique to you
or one that you've learned and
that you practice,
but that helps position yourself
amongst challenging emotions and
thoughts,
but that you did so with the best
intentions and that there's
strength to be gained from knowing
that.
And find support.
You know, once your loved one has
moved in, there are often support
groups of families that are going
through the same thing.
And find support from other
people, too, so you know you're
not alone.
Well, in this day and age where
loneliness and feeling that we are
all islands alone is rampant,
this keeps coming up episode after
episode, no matter what topic or
what guest,
but find the village around you,
find a small network.
It doesn't have to be massive, but
just look for the support and it's
there.
And there are probably other
people looking for the same
support at the same time.
And that's that you use the word
look for.
They're not going to come to you.
You have to seek it out.
And maybe, hopefully, someone
recognizes your struggle and
approaches you with a solution.
But if they don't, search it out
for yourself.
I hope that our listeners today,
if any of these parts of the
conversation triggered some
interest,
to come back and listen to the
full episode.
It's a really rich one.
And we hope that it makes this
challenging transition in life a
little bit easier for everyone.
Thanks for joining us today,
Janice.
It's been a pleasure once again.
And we wish you the best.
And that wraps up this week's
episode of the Caregivers Podcast.
I'm your host, Dr.
Mark Ropolesky.
You can call me Dr.
Mark.
We'll see you next week.
If this conversation today hit
close to home,
I hope it's also helped make some
of these impossible-feeling
decisions a little bit clearer
and a little bit more within
reach.
Janice, thank you so much.
Thank you for helping us speak to
the parts of long-term care
families are often afraid to say
out loud.
And if this episode meant
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We really appreciate your comments
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We'll see you again next week.
Before we wrap up, I wanted to
remind you of something important.
The conversations you hear on this
podcast are here to inform, to
support, to spark reflection.
We're not a substitute for
professional medical advice, care,
therapy, or crisis services.
Listening to this podcast does not
create a doctor-patient or
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between us.
If you're facing a medical
concern, health challenge, a
mental health challenge, or a
caregiving situation that needs
guidance,
I encourage you to reach out to a
qualified professional who knows
your story.
If you're ever in crisis, please
don't wait.
Call your local emergency number
or recognize crisis hotline right
away.
You deserve real-time help and
support.
The views you hear on this show,
whether from me or my guests, are
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They don't necessarily reflect any
organizations we work with, are
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This podcast is an independent
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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.