April 2, 2025 • 40 mins
On this episode of Advice From Your Advocates, Elder Law Attorney Bob Mannor sits with author and caregiver, Nicole J. Smith.
Nicole shares her journey caring for three aging parents with dementia while raising five children, which inspired her book "Diagnosis Dementia: Your Guide for Elder Care Planning in Crisis." Her experience navigating the "Wild West of elder care" offers valuable insights for anyone facing similar challenges.
• Learning to speak four new languages simultaneously: medical, legal, financial, and elder care terminology
• Challenges convincing doctors to provide documentation for a dementia diagnosis despite clear symptoms
• Navigating resistance from a parent with dementia who fought against necessary interventions
• Managing sibling dynamics when caregiving responsibilities fall unevenly
• The importance of having legal documents in place before a crisis occurs
• Financial realities of long-term care when Medicare doesn't cover these expenses
• Self-care strategies for caregivers to avoid burnout
• Resources including Area Agencies on Aging and Aging Life Care Managers
• Finding support through organizations like daughterhood.org
Connect with Nicole on Instagram @DementiaBookReview or LinkedIn, or visit her website at NJSmithBooks.com to learn more about her book "Diagnosis Dementia: Your Guide to Elder Care Planning and Crisis Management."
Host: Attorney Bob Mannor, CELA
Guest: Nicole J. Smith
Executive Producer: Savannah Meksto
Assistant Producers: Samantha Noah + Shalene Gaul
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
You're listening to Advice from your Advocates, a
show where we provide elder lawadvice to professionals who work
with the elderly and theirfamilies.
Speaker 2 (00:11):
Welcome back to Advice from your Advocates.
I'm Bob Manor.
I'm a board-certified elder lawattorney in Michigan.
Excited about our guest today.
We have Nicole Smith.
She's the author of DiagnosisDementia your Guide for Elder
Care Planning in Crisis, and weall need a guide if we have a
loved one with dementia.
Welcome, nicole.
Speaker 1 (00:30):
Great to be here, thank you.
Speaker 2 (00:32):
Tell us a little bit about yourself and a little bit
about your book.
Speaker 1 (00:35):
Yeah, so I am a caregiver in the sandwich
generation.
I'm caring for three agingparents to have dementia and I
have five children, one still athome, in high school and about
five years ago my world wentsideways when my mother started
having issues and I startedflying across the country and
(00:57):
trying to learn the languages ofcaregiving the financial, the
legal, the medical, theemotional, the practical and I
couldn't find a book that I waslooking for to kind of guide me.
I mean, there are definitelybooks out there, and so as I
went through this process, Istarted taking notes and writing
things down and evaluatingthings and I felt I wanted to
(01:19):
share it with others that are inmy situation.
Speaker 2 (01:21):
Yeah, that's great and you have a really
interesting background too.
Tell us a little bit about yourbackground that helped you, and
then after that, tell us alittle bit about some of the
challenges that you faced whenyou realized that your mother
had dementia.
Speaker 1 (01:34):
Yeah.
So I graduated with a businessdegree from the University of
Texas in Austin and I worked incorporate for about 10 years.
I did a little bit of sales, alittle bit of training, a little
bit of auditing, a little bitof everything.
And then, when my husband and Igot married and we started
having children and movingaround for his job, I was
fortunate to be able to stayhome with my children.
(01:55):
And then, as they got older, Iwas not looking to go back to
work because I still needed aflexible schedule.
But I volunteered with a globalnonprofit room to read, and
when I was giving sharingspeeches and spreading the word
about that, I joinedToastmasters to become more
effective at public speaking.
And then I was reading and thenI started writing articles and
(02:17):
then so when all this happenedwith my parents, I was kind of
already working on another bookand then segued into this book
and got it out there.
Speaker 2 (02:26):
You know it's really interesting when we have authors
I'm always curious about.
You know what you learned fromthe process of writing that book
.
So you know there's always whatyou learn from having to just
deal with life and deal withtrying to arrange.
You know care for your motherand then eventually your father
(02:46):
and stepmother.
But what was that process?
What did you learn from thatprocess of also trying to then
boil that down to a book?
That would be interesting.
Speaker 1 (02:58):
Yeah, well, I call it like the Wild West of elder
care right now, because there's,you know, it's a giant space
and obviously people have beensuffering for from dementia for
decades.
But with the baby boomers aging, that 73 million people, mass
force, that it's becoming moreand more in the forefront and
prevalent.
And I I just felt there was aneed and a growing concern and
(03:21):
since I was already in kind ofthe book world and the reading
world, I knew I wanted to do itprofessionally.
So I hired a professionaleditor through a connection, I
hired a professional designerthrough a connection, and then
my niece runs a boutiquebranding firm in the Midwest and
so she designed the cover.
But yes, there was a lot offrustration.
I mean, anytime you're doing itbecause I self-published, which
was my choice, and I learned alot.
(03:42):
And one of the things thatcomforts me is one of the things
they say to prevent dementia islifelong learning, and so I
just keep learning all the timewith everything I do.
Speaker 2 (03:51):
That's great.
I like what you said thereabout the wild west of long-term
care, and I think that's verytrue.
It's amazing how much and howlittle information there is at
the same time, and so what Imean by that is as soon as you
start talking to people andtelling them I need to help my
mom, I need to help my dad, andyou get a lot of information.
(04:20):
Now, some of it is from peoplethat have something to sell
right.
There's the marketers.
All of the assisted livings andindependent livings and things
like that have marketers, andthere's nothing wrong with that.
They need to promote theirresidences and things like that.
But it can be a bitoverwhelming with the folks that
are just trying to sort throughall of it and figure out what
is the best setting.
(04:41):
You know what's the differencebetween independent living and
assisted living and nursing homeand adult foster care and all
these different things.
It's just so much information.
At the same time, I thinkthere's also little information
in sort of distinguishing those.
So it tends to be that we kindof group all those together and
they serve different purposes.
A memory care serves adifferent purpose than assisted
(05:03):
living or adult foster care.
They serve different purposesand work differently with
government programs even, and sothere's so much information
kind of coming at you and itseems like everybody you talk to
has different advice and yet atthe same time getting clarity
is hard because of sort of alack of nuanced information.
Speaker 1 (05:25):
Absolutely yeah.
So I'm like I'm about ready tolike cry.
All the emotions are comingback up because, yes I say it's
like learning four new languagessimultaneously, under duress.
You have to learn the medicalterms, the financial terms, the
legal terms, the elder careterms.
So I was fortunate in that agood friend of mine, my son's
good friend's mother had been inthe elder care industry for
(05:47):
like 10 years.
She managed, like a CCRC, acontinuing care, and so I, you
know, and I knew I didn't evenknow what she did.
And then when this happened withmy mom, I'm like, oh, that's
what you do, like help me withmy book.
I was like I need to organizethe overwhelm because it's hard
to figure out what are the goodresources.
So when I was going through thisand I was flying back and forth
(06:08):
between Jersey and LA and theselong flights, it was kind of a
cathartic process for me towrite about it.
And then in certain situations,like when my mom was in the
psych ward, behavioral health,and I couldn't speak to her,
then I was processing andwriting about that and my
feelings and I started toinvestigate and I would find
resources.
I was like, well, this is agood one.
(06:29):
I don't feel like this one'svery clear, like I did training
and in internal audit I did.
You had to process, you knowyou had to interview people and
understand the process of theirworkflow and so I felt like I
can, I use my discerningrepertoire, I think, for what I
thought was clear and easy andconcise, and someone like myself
going through this massiveemotional overhaul and being
(06:52):
clueless and scared and worried.
And what did I find the moststraightforward and easy and
reputable resources for peopleto use?
And I used podcasts and booksand movies and websites and
anything that I found that wasgood, I put it in my little
working word document and then,when I shipped that off to my
(07:13):
editor with all of my narrative,then we honed it down to a
compelling book.
That's both our story and thenavigating them, acronyms and
the different fields.
And how do you find an elderlaw attorney?
How do you find a care manager?
How do you figure all this out?
Because it's hard.
Speaker 2 (07:31):
Yeah, that's great and it's great that you're using
that hard-fought knowledge tohelp others get a head start on
that, because it's so difficultto know where to start.
I did want to clarify one point.
You mentioned CCRCs.
That is a term of art for ourlisteners that, regarding some
(07:53):
of the government benefitprograms and things like that, a
CCRC is a continuing carecommunity where you can start
out even that sort of in theindependence stage of things all
the way up to you know, 24-hourskilled care all in one
community, and it is a specificterm about.
There's different places thatsometimes have different levels
(08:14):
of care, but that's notnecessarily a CCRC.
A CCRC is a very specific thing.
Now, I mentioned this and Iclarify this because they are
very popular in many states.
In Michigan they're notparticularly popular.
Oddly enough, we only have ahandful of them that's within
our geographic scope of myprimary office and they do exist
(08:36):
, but they're not as common asthey are in many other states.
I've heard from other elder lawattorneys that in other states
that's kind of the go-to, thatthat's the standard level of
care that a lot of communitiesare working with.
Speaker 1 (08:50):
Well, and the acronyms change.
So it used to be a continuingcare resource community and now
it's a life plan community.
But then there's also thedistinction where some of them
are you buy in, like a capitalinvestment, and you, you buy,
and then the other one, likewhere my mother's in memory care
, it is a month to month and um,and I know that and a lot of
(09:11):
these terms are usedinterchangeably because I asked
the question.
I said, well, if it's a rental,what's it called?
And they didn't really have ananswer for me.
So I mean, and then there'sdifferent terms used in
different parts of the country.
So it is it confusing.
Speaker 2 (09:23):
Well, and I think that's one of the things that we
try to get the message outthere, to both our clients and
Manor Law Group and from just tothe general community, and
particularly because we do a lotof education within the
healthcare community with socialworkers and nursing home
administrators and nurses andcare planners and discharge
(09:44):
planners all of that.
We provide education, they'recontinuing education for them.
One of the things that we'realways trying to make sure
people clarify is thedistinctions between the
different levels of care, andit's important it's probably
more important to me in theanalysis that we do than it is
to the average person but we tryto clarify because people come
(10:07):
in and they think that they canget certain government benefits,
whether it's, you know,medicaid or veterans benefits or
waiver benefits or you knowwhatever the benefit that
they're looking for and theyassume that they can get those
in any setting.
And so one of the things we tryto clarify is number one.
We can probably reduce thenoise a little bit by limiting
(10:31):
it to those places that aresuitable for your mom, suitable
for your dad or your aunt orwhoever it is that we're
planning for, because if you'restarting to look at independent
livings and they need 24-hourcare.
That's possible, but it's goingto be really darn expensive and
it's very unlikely, so we canprobably kind of limit those,
(10:52):
and so I think it's reallyimportant to do that distinction
between the different levels ofcare.
This is the type of thing thatI'm imagining that you had to
figure out from yourself, havingnever gone through this before
before you, before you startedhelping your mom.
Speaker 1 (11:06):
Yeah, and fortunately I had my, my friend, who kind
of educated me, and I also justreceived my certified senior
advisor designation because Ijust wanted to learn more.
But yeah, no, and, and, and.
Then the terminology is alsoscary for some people like well,
no, my mom's not going tomemory care.
She's not going to memory care,and I mean, my mom was a flight
(11:26):
risk and she was, and again, shefought us on everything and and
as, and I didn't, you know.
So I'm learning the wholelanguage, I'm learning the
process.
And then the other thing isthat we had to get so a lot of
people's like should I getdiagnosed, should I not?
It's important, maybe it's not,but we had to get a diagnosis
because we had to get herdeclared incapacitated, to
(11:46):
invoke the terms of the trust,so that we could literally save
her from herself.
But, as you know, doctors andlawyers don't really mix and the
doctors don't want to writethese letters, but the lawyers
need these letters.
The only reason we were able toget the neurologist and the
primary physician to sign off onthese letters is that my aunt
has been a nurse for 50 years.
She worked in the LA market asa hospital administrator and she
(12:09):
developed a relationship.
She had the medical POA, shewas in the portal, she was
talking with these physiciansand it took us still nine months
to get those letters.
Speaker 2 (12:19):
That's shocking.
Yeah, yes, so that's veryinteresting, especially for
someone like you.
Say that was a flight risk.
That's one of those red flagswhere we automatically say, okay
, they lack the competency to beable to manage all of their own
affairs if they have a tendencyto wander or get lost, you know
(12:40):
type of a thing that seems likea bellwether that any doctor
should be able to recognize.
That's not been a particularbig problem here in Michigan.
Usually we get those doctorstatements.
Sometimes it takes a little bitmore because if the person
hadn't seen a lot of doctors andjust you, typically we need two
doctor statements.
But that's interesting that insome areas of the country that
(13:02):
that becomes more difficult.
Speaker 1 (13:03):
Yeah, I mean there's so many, and that was the other
thing about with my mom likeeverything that we did was so
incredibly difficult compared toother people we're talking to.
I'm like, well, this cause, youjust can't put it down.
It reads like a suspense novel.
I mean, she got her licensetaken away but she was still
driving and she was obsessedwith the DMV and we couldn't we
couldn't take away, you know, wecouldn't disable the car.
(13:24):
But then we tried to take thecar but then the police were
going to arrest us because sheput the report gets stolen, Like
so she was just cognitiveenough to be really, really
difficult through all of this.
I mean, I could go on with ahundred stories like that.
Speaker 2 (13:37):
Yeah, one of my pet projects that I eventually would
like to do is to do sometraining for first responders,
and I understand that I don'tunderstand the first responders
job.
I'll be the first one to admitthat they have a very difficult
job and they have to do it acertain way and so that they
sometimes are resistant toanyone you know, saying okay,
(14:01):
well, but certain, you know,certain parts of the community
need a different approach.
If you approach someone withAlzheimer's or with you know,
with you know, certain otherdisabilities, that if you
approach them in the same waythat first responder typically
approaches, which tends to befairly aggressive, that can
result in very negative things.
(14:23):
Or even responding to thingslike, hey, we have to disable
this car for the safety of ourmom.
That seems like, if they, youknow, that's certainly something
.
If they got a regular call thatsaid, hey, my kids are
disabling my car and you know,and stealing parts of my car,
any first responder wouldprobably say, hey, that's
criminal, but you know there'scontext of it, and so I've not
(14:47):
had much success yet with thetraining of first responders,
but I do think that that wouldbe a nice addition to their
training to say, okay, let'slook at to see whether there's
any signs of dementia, ofAlzheimer's.
You know of significant mentalrestrictions that would impact
how this person's going torespond to your approaching them
(15:09):
.
Speaker 1 (15:09):
Yeah, well, even then we eventually found the right
person within the police unitthat does.
But then even then, like I talkabout in the book, when we had
my mom in the ER being evaluatedby different psychiatrists,
they would come back and sayshe's fine, what are you talking
about?
Because a lot of people withdementia, they can rise to the
occasion and my mom had workedin healthcare hospitals, she
(15:33):
knew to throw around the HIPAAword and she, I mean again so.
So I literally had trainedpsychiatrists and doctors and
professionals saying, well, whyis your mother here?
She seems perfectly fine.
Speaker 2 (15:43):
And so that's when I whip out the letters and the
documentation and, oh my gosh,it was maddening yeah that can
be particularly difficult forsomeone that was probably, you
know, very educated andwell-spoken, like your mother,
because that doesn't always goaway and they can cover quite
well and, you know, depending onthe type of dementia we see
(16:06):
that often with something likeLewy body dementia, less with
Alzheimer's but depending on theperson, they might have those
skill sets, those personalityskill sets, to be able to cover
and sort of, like you say, riseto the occasion.
That can be much morechallenging because you know if
the people at that particulartime don't see it but you say,
(16:26):
okay, but these are the it's notsafe or not consistently safe.
You know, right now she'srising to the occasion but at
you know, 3 am she might try to,you know, go out and get her
mail and then get confused andwander away from the house.
Speaker 1 (16:42):
Yeah Well, she was hunkered down in her house, her
house, but she would get up inthe middle of the night and yell
at the coyotes and try to goout there and tell them to go
away.
And then she was opposite of mystepmother, so my stepmother's
in Iowa, and we said, hey, shehas aphasia.
And we're like, hey, youprobably should stop driving.
She's like, okay, here's I.
Literally I'm sorry.
There's a million, a millionstories.
(17:05):
And finally, when we got mymother through the psych ward
and admitted to a memory careunit and she was still upset
with us and whatever, but shegot on the right meds, the right
meds for anxiety, the rightmeds for she's not on that many
meds but she's on the right mixof meds, so she's more even keel
because like anger and feistyand assertive doesn't even begin
(17:26):
to.
Speaker 2 (17:27):
You know, fully encompass how my mother was and
you know I know some people are,are uh get nervous about and
and you know we we certainlywouldn't want to have meds that
I'm sort of zombie somebody out.
But there's a differencebetween that and, you know, kind
of getting taking that edge offwhere they're overly aggressive
(17:49):
or their behavior's there, andsometimes meds can be very
effective with regard to that.
It's just sort of monitoringthat and that's what I think
that you know, you're sayingthat you do, is to make sure
that it's the right, you knowit's the right levels and the
right amounts and the rightdrugs that still allow her to
(18:09):
live her life but kind of takethat edge off where she was, you
know, more aggressive.
Speaker 1 (18:14):
Yeah, well, this was at a behavioral health facility
for elders in New Jersey, thatwith a highly trained
geropsychologist, or what.
I mean there's so manyspecialties, but I mean, yeah,
he worked the magic.
Whatever he did, it worked andit helped, or what?
I mean there's so manyspecialties, but I mean what?
Yeah, he, he worked the magic.
Whatever he did it, it workedand it helped.
But I mean she still was madand upset and I'm not going to
memory care and wouldn't get outof the car when we got there.
(18:34):
Like I mean again, like thestories go on, continue to go on
.
Speaker 2 (18:39):
I think their listeners are going to be very
you know that this is relatableto them a lot.
A lot of people are dealingwith family members.
That it's hard, you know it'sparticularly hard.
One is that I think that as weage, none of us imagine we're
going to get to.
You know, we kind of imaginewe're going to retire and then
(19:00):
live happily ever after, andthat's kind of the story that
we're told, that we're just notprepared for that.
People.
That's kind of the story thatwe're told, that we're just not
prepared for that.
People aren't prepared for theidea that there could come this
stage of life.
And then, secondly, the person.
While they might not have beenprepared for it, they also now
have limited ability to adaptbecause of the changes in their
(19:22):
brain chemistry.
And so I always tell folks,especially when it's a husband
and wife, and the spouse issaying, oh well, my husband's
just grumpy, this is just theway he is, and it's like, okay,
well, it's more than that now,once there's been a diagnosis of
Alzheimer's or dementia orsomething like that, but it can
be.
I think people will relate a lotto the story that you're
(19:45):
telling.
With regard to your mom, I havea funny story that you
mentioned about your stepmom andthat she was very compliant and
so growing up my dad was verydominant and he did it his way
and we all kind of complied.
And I remember at one pointseveral of my siblings were
(20:07):
working with the law office andat one point my brother said to
me if we ever have to take dad'skeys away from him, I'm not
doing that, you can do that andwe kind of had a laugh about it.
What's funny with the story isis that when he got to a certain
point he lacked confidence andhe chose to give up his keys and
(20:27):
sell his cars.
He said I'm just not drivinganymore, and I would have never
guessed that in my entire life.
Because he loved driving, heloved traveling.
It was one of his favoritethings to do.
We as a family drove all overthe country as kids in a
motorhome and he just loved thattravel.
I think he loved the travelmore than the destination, and
(20:48):
the fact that he voluntarilygave up his keys was a huge
surprise to me, even to thepoint where I was saying, dad,
you can still drive, you can goto the grocery store.
And he's like nope, nope, notdoing it anymore.
I was like OK, so you neverknow what to expect, and you
might have the very, you know,gentle parent that all of a
sudden becomes very stubbornwith the onset of some memory
(21:13):
issues.
Speaker 1 (21:13):
Yeah, and she was.
I mean, it's losing yourindependence right for driving,
and she's fiercely independentand then being in the sandwich
generation, so at the same timewe're trying to take the car
away from my mom, I haveteenagers that are getting their
license and having fenderbenders, and you know.
So we've got all this going on.
And then again, when Imentioned my mom was in
behavioral health for thepsychotic break and trying to
manage the meds, and then withinthe year, my daughter is in
(21:36):
behavioral health for anxietyand depression.
So I mean, it's literally thesandwich, you know, is I'm in
the sandwich, the meat of thesandwich.
And then the other thing I wasgoing to talk about is so my
mother had all of her documentsdone.
She, you know powers ofattorney, trust, will,
everything, and so then I thenturned my focus on my dad in
Iowa and I'm like, hey, dad,we're going.
(21:58):
You know, just just check inhere.
Do you have all your stuff done?
No, not a single document.
And he's 80 and not a single.
And I'm like, wait a minute.
But he said, no, I'm not doingit, because if I do my will I'm
going to die and I'm not goingto do it.
So I'm like, okay, great.
So then I fly to Iowa and Ihire my own elder care attorney
and I tell him I'm like I'mgoing to meet with this guy
because the states areeverything's different, laws are
(22:20):
different in every state and Ijust need to know what's coming
because I'm going to prepareeven if you're not.
And then eventually he butagain, it took 18 months to get
him to come around to saying,okay, yes, you know, I agree
that we should do this.
I mean so then I started onthat, you know.
Speaker 2 (22:36):
That's so important.
And so if you're, if you're thechild, if you're a family
member, if you're, you know evenyourself that don't have those
legal documents.
I talk about the lifetimedocuments, and then you know the
after death documents.
Lifetime documents can be yourfinancial power of attorney,
your health care proxy, maybesome privacy waivers, maybe a
(22:57):
trust, but the idea.
Those are so important and itchanges when folks come to see
me in a crisis, and a lot ofpeople wait until the crisis
until they come to see me.
The cost, the effort, theanguish, the time that it takes
everything is easier andsmoother if they have those
documents in place before thecrisis, and if they don't, it
(23:21):
can increase the cost and thetime to do planning and to get
things in effect.
Sometimes we end up having torely on the judge or the court
to order the right person, andsometimes, if there's at all
sort of a family dispute, thejudge might just take a stranger
to make those decisions, and soit is just so important to get
(23:44):
those things in place before thecrisis.
Speaker 1 (23:45):
Yeah, and I also had the sibling issue.
So my sister and I I didn'tspeak to her for two years when
we were going through thisbecause she was being difficult
and she said, well, you dealwith it, I'm not dealing with it
, but then proceeded to tell mehow I was doing everything
incorrectly and badly and poorly.
And yeah, and I have a brother,but he had, he had moved away
(24:06):
and kind of wasn't really socialwith the family anymore.
So what my older law attorneyin LA said?
He goes, he's like you fit themold One has their handout, one
is checked out and one's leftwith doing everything, usually
the eldest daughter, which,hello, that's me.
So that's where I am.
Speaker 2 (24:21):
Yeah, yeah.
So talk to us a little bit more.
I know this is a big issue forlots of folks, but the stress of
that sandwich generation andyou know we talk about that it's
been around for a bit, thatthat's been a conversation.
But I think it's one thing tobe the sandwich generation when
you're just trying to make sureyou keep an eye on your elderly
(24:45):
parents, but it's another whenyou throw in the dementia
diagnosis and so that adds awhole different level to a
sandwich generation conversation.
So tell us a little bit moreabout the stress associated with
that.
Speaker 1 (24:59):
Where do I begin?
You know I had the distance had, so I'm fortunate that I am a
communicator and I haveresources.
So, I mentioned, my aunt hasbeen a nurse for 50 years, so
she's my medical confidant.
My husband has been a CPA for40 years and so anything to deal
with taxes or taxes or financesor accounts like he's my go-to
(25:21):
guy.
And then I I have, you know, afriend that's a financial
advisor that helped with allthat, and we're lucky that my
mom could not afford to stay inher house, even though she
thought she was a gazillionaire20 times over in her mental
state.
But once we sold her house inLos Angeles, right at the
pandemic bubble, she sold it fora lot of money and so now we're
(25:42):
able to take care of her andshe can be in memory care, which
is so expensive and that to metakes a huge, huge load off is
that she's got the money to payfor it Because, as you know,
medicare does not pay forlong-term care and you're either
wealthy enough to pay for yourown care or you're poor enough
to qualify for Medicaid and sickenough or, you know, the
(26:04):
forgotten middle is the one inthe middle dealing with children
and parents and you're in yourthe height of your career,
trying to experience and build,you know your nest egg, and then
everything goes sidewaysbecause your parents are not
behaving normally and peopledon't realize memory or dementia
is not just memory loss, itcould be behavior, it could be
(26:24):
mood, it could be executivefunction.
So people don't recognize itbecause it's not.
You know, mom forgot mybirthday.
I mean, it's so much.
It can be so much more thanthat.
Speaker 2 (26:35):
Yeah, I did want to clarify one thing that you said
as far as Medicaid.
Like you say, medicaid can payfor long-term care where
Medicare does not.
It is the reason why you saidthat correctly.
What I wanted to clarify wasand it's particularly because
it's something that we do in ourlaw office is that we help
people not have to go into thatyou had mentioned.
(26:56):
You're either rich and you canafford it, or you're too poor
and you can qualify for Medicaidand everybody in the middle.
That's what one of the thingsthat lawyers like I do is we
help people find those wayswithin the law to protect their
assets and still qualify A lotof what we do.
So I hear this out and you know, occasionally, if there is a
(27:17):
conversation about protectingassets, it's always oh well, you
have to do it.
You know, five years in advance, or you have to do it.
You know you do it this certainway.
A good portion of the planningthat we do to help people so
that they don't becomeimpoverished is what I call
crisis planning, meaning that wedon't actually complete the
planning until the crisis occurs, and in pretty much every state
(27:40):
, there's going to be optionsfor that.
Now, they're not perfectoptions, but it is one of those
things that I want to make surethere's not.
There's not there's that sort ofa myth that you have to be
impoverished to qualify forMedicaid.
There's many ways to protectthose assets in pretty much
every state in the United Statesand still qualify in their
(28:00):
legal ways.
There are ways that are builtinto the law or have built in
through the court process, wherewe've, you know, through court
proceedings and things like that, we've created these paths of
being able to protect assets andstill qualify for Medicaid,
which I think is very fair,because if you think about it,
(28:21):
you know if you have open heartsurgery, it's probably going to
be fully covered right byMedicare and by your
supplemental insurance.
But if you get Alzheimer'sinstead of heart disease, then
they say, well, you have to gobroke first.
Well, that's where an eldercare attorney can kind of level
the playing field and make surethat you don't have to become
(28:43):
impoverished because you got thewrong disease, and so it's just
something I wanted to clarify,particularly because it's
something that we do in our lawoffice.
Speaker 1 (28:50):
No, well, absolutely.
And it's so different state bystate, right.
So you have to be aware andpeople are again, people don't
plan and they have theirperception.
Well, I don't, I don't want totalk to an attorney.
Attorneys are expensive.
I'm like well, you're going toend up spending a lot more in
probate or in grief or in youknow lot more in probate or in
(29:13):
grief or in you know you need tofind the people that are
educated in this field to walkyou through the legal process
and understand what documentsyou need.
That's why I tell people don'tgo to LegalZoom to create your
legal documents because thenuances and the like you need.
That's why my whole book talksabout use, build your network,
build a team from friends,neighbors, family and paid
professionals right.
(29:34):
So it's so important to get theright resources.
Otherwise you're going tocreate a bigger problem for
yourself down the line.
Speaker 2 (29:41):
Yeah.
So that's one of the things Ialways like about my work within
this field is that it isusually the cheapest option.
So we say, okay, lawyers areexpensive, absolutely, and we're
not an exception to that.
We are expensive, but it'susually the cheapest option
because otherwise it's privatepay until you run out of money,
and that's not ideal.
(30:02):
I want to hear more about thebook I'm really interested in
and the idea that it's a guidefor folks and helping them
through these stages that youwent through and you had all
these resources and all thesefriends and family that you
could rely on.
A lot of families don't havethat, so I think your book can
really help out.
(30:22):
So the book again is DiagnosisDementia, your Guide for Elder
Care, Planning in Crisis.
Talk to us about how your bookcan help families that are just
starting out on this journey.
Speaker 1 (30:32):
Sure, it's Elder Care Planning and Crisis Management,
because, yes, we encouragepeople to have the conversations
and to start early, but, as youknow human nature, people just
are going to avoid what theydon't want to deal with, and so
you often end up in a crisis.
So my book is kind of acombination.
It's a it's prescriptive, so itkind of talks about what to do
(30:54):
and how to do it and why to doit, and it's also a memoir,
because it talks abouteverything I went through my mom
, my dad, my step-mom and all.
So it kind of it brings it homeLike this is this is probably
the worst possible scenario, butthis happened to us and this is
what can happen and this isthese are the signs we missed
and this is what we learned.
And so it's it's it's a very.
(31:15):
It's very well organized.
It's organized by section, bychapter, and that the the table
of contents is very clear.
So this is a little book.
It's like you can it's very youcan stick it in your purse
while you're at at the doctor'soffice waiting and review the
section on legal or the sectionon medical or the section on
finance, and also the resourcesthat I usually send people to
(31:38):
are.
You probably know the AAAs.
So the Area Agencies on Agingare all over the country and
they're federally funded throughthe state and they are a wealth
of resources for people to kindof figure this out.
And then the other thing that Ireally found or learned that's
so valuable are these aging lifecare managers, who are private
(31:58):
pay but they are social workersand nurses and they know the
system.
You have to learn the systemand the one system I had to
learn that I didn't want tolearn was Medicare for my mother
and all of that.
That was so, so horrible.
I'm still, I know enough to bedangerous, but it's very, it's
still very scary, the Medicarepiece Anyway.
So I like the AAAs and I likethe Aging Life Care Managers as
(32:22):
like the immediate kind ofresources to kind of start to
figure out what to do and how todo it.
Speaker 2 (32:29):
That makes sense.
We talk about it as a maze, wecall it the elder care journey,
but really it's the elder caremaze and I actually have a sort
of a picture of all thedifferent bad things that can
happen and it kind of, when youlay it out on a picture, it kind
of looks like that old kidsboard game, Chutes and Ladders,
where you think you're makingprogress.
(32:49):
You're almost to the top, andthen you slide all the way back
down to the beginning.
Speaker 1 (32:53):
That's perfect.
Yeah, I love it.
Speaker 2 (32:56):
Yeah, no.
Speaker 1 (32:56):
I mean we went through some chutes and then,
you know, worked our way back upthe ladder.
Yeah, that's a perfect analogy.
Speaker 2 (33:03):
Talk to us a little bit about the importance of the
caregivers.
You know and you were.
You had an extra strugglebecause you were at least at the
caregivers.
You know and you were.
You had an extra strugglebecause you were at least at the
beginning and still to someextent have been a long distance
caregiver and trying to go backand forth and set things up
where you're not living in thesame state.
But the importance of takingcare of yourself, of that
(33:26):
self-care, because it can beoverwhelming and the person that
you're trying to help won't behelped if you get sick, if you
break down.
So the importance of caring foryourself and making sure that
you're not overdoing it yourselfwhen you're trying to care for
a loved one with dementia.
Speaker 1 (33:44):
Yeah, absolutely.
I've always turned towardexercise to manage my stress and
like physical and mental stress, and so that has been something
I've done my entire life.
So I was never an athlete never.
I mean, I played on a couplelittle teams in junior high or
something, but I was not, youknow.
So I but I have always made itmy priority to exercise at least
(34:08):
30 minutes a day, like four tofive days a week, because that
is my, that's my reset, that'smy clarity, and even with every
one of my five pregnancies, Iworked up doing aerobics or
worked out right up until theday of delivery, and then I was
back in, back at it like a weekor two later because, again,
that's my, that's my absolutego-to.
And everyone's got somethingdifferent.
Maybe it's music or maybe it'scooking or maybe it's reading a
(34:32):
book, but, as you probably know,30% of caregivers die before
the person they're caring for,and so the one place that I
found that's absolutely fabulousis daughterhoodorg, and I am a
circle leader for daughterhood,so it's a virtual support group
that's national, but I also oneof the first support groups I
(34:52):
ever went to was through anelder law attorney in New Jersey
, because they offered one, andso AARP has them, and the aging
care, aging, I'm sorry.
The AAAs, there's the Y,there's plenty of support groups
out there, some churches, sofind a support group as well,
because you are not alone andeverybody wants to know that
they're not alone and thatyou're telling your story in the
(35:13):
book it makes it much morereadable that way, if you're
(35:34):
just trying to give tips andadvice, that really it's harder
to take in if you don'tunderstand the context of it.
Speaker 2 (35:43):
And I think, being relatable and people you know,
having you know similarexperiences, or even sometimes,
excuse me, lesser experiences,where they say, okay, well, she
had it even worse than I and shegot through this, so it's going
to be okay I think that's areally important part of your
book, in addition to the youknow the tips and the guide is
(36:05):
telling your story is part of it, so I commend you on that.
Speaker 1 (36:09):
Yeah, no, I mean, like I said, it's just, it's
unbelievable, this stuff that wewere just in just disbelief of
what we were going through.
And then I gave a talk not longago and the one woman on there
she said you know, nicoleinspired me to keep going,
because you know you're notalone.
You know, yes, it's difficultand everyone's different, but
you know there are people outthere going through the same
thing.
(36:29):
They understand, they relateand there are.
There is help out there.
But you do have to take alittle bit of extra effort and
energy, which you don't reallyhave, but it's worth it.
Speaker 2 (36:39):
Yes, Very good.
Well, as we start to wrap uphere, can you kind of give us
some key takeaways from yourbook and what what people should
expect if they buy your bookand how that would help them
with their family?
Speaker 1 (36:53):
Yeah, well, all through the book, I say have the
conversation, start theconversation, approach this
subject, because I had the samething.
These are my parents.
I don't want to ask about theirfinances and their health and
that's very personal and that'stheir thing.
It's not my thing.
But I had to steal documentsfrom my mother's office and rush
to the library to copy them,and then I wish I would have
(37:15):
stolen more things, I mean, butit was very, very difficult
because I felt like I wasbetraying her, I was being a bad
child.
But it in in the more time youhave.
You're going to need timebecause you can't show up for
(37:36):
Thanksgiving and at the table,be like, hey, let's talk about
death, and it just doesn't workthat way.
So start the conversation.
And then what I've had peopletell me is, if you're listening
to my right to me right now andyou read my book, you feel like
you're talking to me, because Idefinitely am a very
conversational tone.
Like I tell people, I'm not aphysician, I'm not a lawyer, I'm
not a nurse, I'm not a socialworker.
(37:58):
I am a daughter, talking fromthe daughter perspective,
sharing exactly the frustrationsI had and what we did, and then
what showed up next and how weworked together to handle it,
and there were a lot of tears.
I mean a lot of stress and Imean, like I said, I am still in
it every day.
I am living the life of thewhack-a-mole caregiver because
(38:20):
literally something comes upevery couple of weeks that I did
not even expect, and then Ihave to figure it out.
Well, tell us about where we canfind you on social media and
where we can get moreinformation and stay connected
with you books on Instagram andmy handle is at Dementia Book
Review and so once I startedreading more, I started posting
(38:53):
my little reviews, because whatI found was there are a lot of
books out there talking abouthow do you interact with someone
dementia, how do you behavior,how do you alter your behavior,
how do you care give and I waslike, yeah, that is all
important, but what aboutgetting the legal documents and
the financial documents?
And my dad had stockcertificates from the 80s in his
drawer and I mean you need tofigure that stuff out and ask
(39:16):
the questions and investigate,but you need time.
So, anyway, so, dementia BookReview on Instagram.
And I love LinkedIn, nicoleSmith, type in or just go to my
website and then that links you.
But I definitely am a connectorand a speaker and I love
LinkedIn, so connect with me onLinkedIn if you're on LinkedIn.
Speaker 2 (39:32):
Very good.
So the primary website is NJSsorry, I'm sorry NJSmithBookscom
with an S at the end and thebook title is Diagnosis Dementia
your Guide to Elder CarePlanning and Crisis Management.
Thank you so much, nicole, forcoming on, and we appreciate you
with all your insight.
Speaker 1 (39:53):
Thank you.
I learned some things today too.
I appreciate it.
Speaker 2 (39:56):
Now, if you enjoyed this podcast, don't forget to
subscribe.
We're on anywhere you can findpodcasts, or, if you prefer, you
can go to our website atmanorlawgroupcom, or we're also
on YouTube.
Thanks, Thanks.
You're listening to Advice from your Advocates, a
show where we provide elder lawadvice to professionals who work
with the elderly and theirfamilies.
Speaker 2 (00:11):
Welcome back to Advice from your Advocates.
I'm Bob Manor.
I'm a board-certified elder lawattorney in Michigan.
Excited about our guest today.
We have Nicole Smith.
She's the author of DiagnosisDementia your Guide for Elder
Care Planning in Crisis, and weall need a guide if we have a
loved one with dementia.
Welcome, nicole.
Speaker 1 (00:30):
Great to be here, thank you.
Speaker 2 (00:32):
Tell us a little bit about yourself and a little bit
about your book.
Speaker 1 (00:35):
Yeah, so I am a caregiver in the sandwich
generation.
I'm caring for three agingparents to have dementia and I
have five children, one still athome, in high school and about
five years ago my world wentsideways when my mother started
having issues and I startedflying across the country and
(00:57):
trying to learn the languages ofcaregiving the financial, the
legal, the medical, theemotional, the practical and I
couldn't find a book that I waslooking for to kind of guide me.
I mean, there are definitelybooks out there, and so as I
went through this process, Istarted taking notes and writing
things down and evaluatingthings and I felt I wanted to
(01:19):
share it with others that are inmy situation.
Speaker 2 (01:21):
Yeah, that's great and you have a really
interesting background too.
Tell us a little bit about yourbackground that helped you, and
then after that, tell us alittle bit about some of the
challenges that you faced whenyou realized that your mother
had dementia.
Speaker 1 (01:34):
Yeah.
So I graduated with a businessdegree from the University of
Texas in Austin and I worked incorporate for about 10 years.
I did a little bit of sales, alittle bit of training, a little
bit of auditing, a little bitof everything.
And then, when my husband and Igot married and we started
having children and movingaround for his job, I was
fortunate to be able to stayhome with my children.
(01:55):
And then, as they got older, Iwas not looking to go back to
work because I still needed aflexible schedule.
But I volunteered with a globalnonprofit room to read, and
when I was giving sharingspeeches and spreading the word
about that, I joinedToastmasters to become more
effective at public speaking.
And then I was reading and thenI started writing articles and
(02:17):
then so when all this happenedwith my parents, I was kind of
already working on another bookand then segued into this book
and got it out there.
Speaker 2 (02:26):
You know it's really interesting when we have authors
I'm always curious about.
You know what you learned fromthe process of writing that book
.
So you know there's always whatyou learn from having to just
deal with life and deal withtrying to arrange.
You know care for your motherand then eventually your father
(02:46):
and stepmother.
But what was that process?
What did you learn from thatprocess of also trying to then
boil that down to a book?
That would be interesting.
Speaker 1 (02:58):
Yeah, well, I call it like the Wild West of elder
care right now, because there's,you know, it's a giant space
and obviously people have beensuffering for from dementia for
decades.
But with the baby boomers aging, that 73 million people, mass
force, that it's becoming moreand more in the forefront and
prevalent.
And I I just felt there was aneed and a growing concern and
(03:21):
since I was already in kind ofthe book world and the reading
world, I knew I wanted to do itprofessionally.
So I hired a professionaleditor through a connection, I
hired a professional designerthrough a connection, and then
my niece runs a boutiquebranding firm in the Midwest and
so she designed the cover.
But yes, there was a lot offrustration.
I mean, anytime you're doing itbecause I self-published, which
was my choice, and I learned alot.
(03:42):
And one of the things thatcomforts me is one of the things
they say to prevent dementia islifelong learning, and so I
just keep learning all the timewith everything I do.
Speaker 2 (03:51):
That's great.
I like what you said thereabout the wild west of long-term
care, and I think that's verytrue.
It's amazing how much and howlittle information there is at
the same time, and so what Imean by that is as soon as you
start talking to people andtelling them I need to help my
mom, I need to help my dad, andyou get a lot of information.
(04:20):
Now, some of it is from peoplethat have something to sell
right.
There's the marketers.
All of the assisted livings andindependent livings and things
like that have marketers, andthere's nothing wrong with that.
They need to promote theirresidences and things like that.
But it can be a bitoverwhelming with the folks that
are just trying to sort throughall of it and figure out what
is the best setting.
(04:41):
You know what's the differencebetween independent living and
assisted living and nursing homeand adult foster care and all
these different things.
It's just so much information.
At the same time, I thinkthere's also little information
in sort of distinguishing those.
So it tends to be that we kindof group all those together and
they serve different purposes.
A memory care serves adifferent purpose than assisted
(05:03):
living or adult foster care.
They serve different purposesand work differently with
government programs even, and sothere's so much information
kind of coming at you and itseems like everybody you talk to
has different advice and yet atthe same time getting clarity
is hard because of sort of alack of nuanced information.
Speaker 1 (05:25):
Absolutely yeah.
So I'm like I'm about ready tolike cry.
All the emotions are comingback up because, yes I say it's
like learning four new languagessimultaneously, under duress.
You have to learn the medicalterms, the financial terms, the
legal terms, the elder careterms.
So I was fortunate in that agood friend of mine, my son's
good friend's mother had been inthe elder care industry for
(05:47):
like 10 years.
She managed, like a CCRC, acontinuing care, and so I, you
know, and I knew I didn't evenknow what she did.
And then when this happened withmy mom, I'm like, oh, that's
what you do, like help me withmy book.
I was like I need to organizethe overwhelm because it's hard
to figure out what are the goodresources.
So when I was going through thisand I was flying back and forth
(06:08):
between Jersey and LA and theselong flights, it was kind of a
cathartic process for me towrite about it.
And then in certain situations,like when my mom was in the
psych ward, behavioral health,and I couldn't speak to her,
then I was processing andwriting about that and my
feelings and I started toinvestigate and I would find
resources.
I was like, well, this is agood one.
(06:29):
I don't feel like this one'svery clear, like I did training
and in internal audit I did.
You had to process, you knowyou had to interview people and
understand the process of theirworkflow and so I felt like I
can, I use my discerningrepertoire, I think, for what I
thought was clear and easy andconcise, and someone like myself
going through this massiveemotional overhaul and being
(06:52):
clueless and scared and worried.
And what did I find the moststraightforward and easy and
reputable resources for peopleto use?
And I used podcasts and booksand movies and websites and
anything that I found that wasgood, I put it in my little
working word document and then,when I shipped that off to my
(07:13):
editor with all of my narrative,then we honed it down to a
compelling book.
That's both our story and thenavigating them, acronyms and
the different fields.
And how do you find an elderlaw attorney?
How do you find a care manager?
How do you figure all this out?
Because it's hard.
Speaker 2 (07:31):
Yeah, that's great and it's great that you're using
that hard-fought knowledge tohelp others get a head start on
that, because it's so difficultto know where to start.
I did want to clarify one point.
You mentioned CCRCs.
That is a term of art for ourlisteners that, regarding some
(07:53):
of the government benefitprograms and things like that, a
CCRC is a continuing carecommunity where you can start
out even that sort of in theindependence stage of things all
the way up to you know, 24-hourskilled care all in one
community, and it is a specificterm about.
There's different places thatsometimes have different levels
(08:14):
of care, but that's notnecessarily a CCRC.
A CCRC is a very specific thing.
Now, I mentioned this and Iclarify this because they are
very popular in many states.
In Michigan they're notparticularly popular.
Oddly enough, we only have ahandful of them that's within
our geographic scope of myprimary office and they do exist
(08:36):
, but they're not as common asthey are in many other states.
I've heard from other elder lawattorneys that in other states
that's kind of the go-to, thatthat's the standard level of
care that a lot of communitiesare working with.
Speaker 1 (08:50):
Well, and the acronyms change.
So it used to be a continuingcare resource community and now
it's a life plan community.
But then there's also thedistinction where some of them
are you buy in, like a capitalinvestment, and you, you buy,
and then the other one, likewhere my mother's in memory care
, it is a month to month and um,and I know that and a lot of
(09:11):
these terms are usedinterchangeably because I asked
the question.
I said, well, if it's a rental,what's it called?
And they didn't really have ananswer for me.
So I mean, and then there'sdifferent terms used in
different parts of the country.
So it is it confusing.
Speaker 2 (09:23):
Well, and I think that's one of the things that we
try to get the message outthere, to both our clients and
Manor Law Group and from just tothe general community, and
particularly because we do a lotof education within the
healthcare community with socialworkers and nursing home
administrators and nurses andcare planners and discharge
(09:44):
planners all of that.
We provide education, they'recontinuing education for them.
One of the things that we'realways trying to make sure
people clarify is thedistinctions between the
different levels of care, andit's important it's probably
more important to me in theanalysis that we do than it is
to the average person but we tryto clarify because people come
(10:07):
in and they think that they canget certain government benefits,
whether it's, you know,medicaid or veterans benefits or
waiver benefits or you knowwhatever the benefit that
they're looking for and theyassume that they can get those
in any setting.
And so one of the things we tryto clarify is number one.
We can probably reduce thenoise a little bit by limiting
(10:31):
it to those places that aresuitable for your mom, suitable
for your dad or your aunt orwhoever it is that we're
planning for, because if you'restarting to look at independent
livings and they need 24-hourcare.
That's possible, but it's goingto be really darn expensive and
it's very unlikely, so we canprobably kind of limit those,
(10:52):
and so I think it's reallyimportant to do that distinction
between the different levels ofcare.
This is the type of thing thatI'm imagining that you had to
figure out from yourself, havingnever gone through this before
before you, before you startedhelping your mom.
Speaker 1 (11:06):
Yeah, and fortunately I had my, my friend, who kind
of educated me, and I also justreceived my certified senior
advisor designation because Ijust wanted to learn more.
But yeah, no, and, and, and.
Then the terminology is alsoscary for some people like well,
no, my mom's not going tomemory care.
She's not going to memory care,and I mean, my mom was a flight
(11:26):
risk and she was, and again, shefought us on everything and and
as, and I didn't, you know.
So I'm learning the wholelanguage, I'm learning the
process.
And then the other thing isthat we had to get so a lot of
people's like should I getdiagnosed, should I not?
It's important, maybe it's not,but we had to get a diagnosis
because we had to get herdeclared incapacitated, to
(11:46):
invoke the terms of the trust,so that we could literally save
her from herself.
But, as you know, doctors andlawyers don't really mix and the
doctors don't want to writethese letters, but the lawyers
need these letters.
The only reason we were able toget the neurologist and the
primary physician to sign off onthese letters is that my aunt
has been a nurse for 50 years.
She worked in the LA market asa hospital administrator and she
(12:09):
developed a relationship.
She had the medical POA, shewas in the portal, she was
talking with these physiciansand it took us still nine months
to get those letters.
Speaker 2 (12:19):
That's shocking.
Yeah, yes, so that's veryinteresting, especially for
someone like you.
Say that was a flight risk.
That's one of those red flagswhere we automatically say, okay
, they lack the competency to beable to manage all of their own
affairs if they have a tendencyto wander or get lost, you know
(12:40):
type of a thing that seems likea bellwether that any doctor
should be able to recognize.
That's not been a particularbig problem here in Michigan.
Usually we get those doctorstatements.
Sometimes it takes a little bitmore because if the person
hadn't seen a lot of doctors andjust you, typically we need two
doctor statements.
But that's interesting that insome areas of the country that
(13:02):
that becomes more difficult.
Speaker 1 (13:03):
Yeah, I mean there's so many, and that was the other
thing about with my mom likeeverything that we did was so
incredibly difficult compared toother people we're talking to.
I'm like, well, this cause, youjust can't put it down.
It reads like a suspense novel.
I mean, she got her licensetaken away but she was still
driving and she was obsessedwith the DMV and we couldn't we
couldn't take away, you know, wecouldn't disable the car.
(13:24):
But then we tried to take thecar but then the police were
going to arrest us because sheput the report gets stolen, Like
so she was just cognitiveenough to be really, really
difficult through all of this.
I mean, I could go on with ahundred stories like that.
Speaker 2 (13:37):
Yeah, one of my pet projects that I eventually would
like to do is to do sometraining for first responders,
and I understand that I don'tunderstand the first responders
job.
I'll be the first one to admitthat they have a very difficult
job and they have to do it acertain way and so that they
sometimes are resistant toanyone you know, saying okay,
(14:01):
well, but certain, you know,certain parts of the community
need a different approach.
If you approach someone withAlzheimer's or with you know,
with you know, certain otherdisabilities, that if you
approach them in the same waythat first responder typically
approaches, which tends to befairly aggressive, that can
result in very negative things.
(14:23):
Or even responding to thingslike, hey, we have to disable
this car for the safety of ourmom.
That seems like, if they, youknow, that's certainly something
.
If they got a regular call thatsaid, hey, my kids are
disabling my car and you know,and stealing parts of my car,
any first responder wouldprobably say, hey, that's
criminal, but you know there'scontext of it, and so I've not
(14:47):
had much success yet with thetraining of first responders,
but I do think that that wouldbe a nice addition to their
training to say, okay, let'slook at to see whether there's
any signs of dementia, ofAlzheimer's.
You know of significant mentalrestrictions that would impact
how this person's going torespond to your approaching them
(15:09):
.
Speaker 1 (15:09):
Yeah, well, even then we eventually found the right
person within the police unitthat does.
But then even then, like I talkabout in the book, when we had
my mom in the ER being evaluatedby different psychiatrists,
they would come back and sayshe's fine, what are you talking
about?
Because a lot of people withdementia, they can rise to the
occasion and my mom had workedin healthcare hospitals, she
(15:33):
knew to throw around the HIPAAword and she, I mean again so.
So I literally had trainedpsychiatrists and doctors and
professionals saying, well, whyis your mother here?
She seems perfectly fine.
Speaker 2 (15:43):
And so that's when I whip out the letters and the
documentation and, oh my gosh,it was maddening yeah that can
be particularly difficult forsomeone that was probably, you
know, very educated andwell-spoken, like your mother,
because that doesn't always goaway and they can cover quite
well and, you know, depending onthe type of dementia we see
(16:06):
that often with something likeLewy body dementia, less with
Alzheimer's but depending on theperson, they might have those
skill sets, those personalityskill sets, to be able to cover
and sort of, like you say, riseto the occasion.
That can be much morechallenging because you know if
the people at that particulartime don't see it but you say,
(16:26):
okay, but these are the it's notsafe or not consistently safe.
You know, right now she'srising to the occasion but at
you know, 3 am she might try to,you know, go out and get her
mail and then get confused andwander away from the house.
Speaker 1 (16:42):
Yeah Well, she was hunkered down in her house, her
house, but she would get up inthe middle of the night and yell
at the coyotes and try to goout there and tell them to go
away.
And then she was opposite of mystepmother, so my stepmother's
in Iowa, and we said, hey, shehas aphasia.
And we're like, hey, youprobably should stop driving.
She's like, okay, here's I.
Literally I'm sorry.
There's a million, a millionstories.
(17:05):
And finally, when we got mymother through the psych ward
and admitted to a memory careunit and she was still upset
with us and whatever, but shegot on the right meds, the right
meds for anxiety, the rightmeds for she's not on that many
meds but she's on the right mixof meds, so she's more even keel
because like anger and feistyand assertive doesn't even begin
(17:26):
to.
Speaker 2 (17:27):
You know, fully encompass how my mother was and
you know I know some people are,are uh get nervous about and
and you know we we certainlywouldn't want to have meds that
I'm sort of zombie somebody out.
But there's a differencebetween that and, you know, kind
of getting taking that edge offwhere they're overly aggressive
(17:49):
or their behavior's there, andsometimes meds can be very
effective with regard to that.
It's just sort of monitoringthat and that's what I think
that you know, you're sayingthat you do, is to make sure
that it's the right, you knowit's the right levels and the
right amounts and the rightdrugs that still allow her to
(18:09):
live her life but kind of takethat edge off where she was, you
know, more aggressive.
Speaker 1 (18:14):
Yeah, well, this was at a behavioral health facility
for elders in New Jersey, thatwith a highly trained
geropsychologist, or what.
I mean there's so manyspecialties, but I mean, yeah,
he worked the magic.
Whatever he did, it worked andit helped, or what?
I mean there's so manyspecialties, but I mean what?
Yeah, he, he worked the magic.
Whatever he did it, it workedand it helped.
But I mean she still was madand upset and I'm not going to
memory care and wouldn't get outof the car when we got there.
(18:34):
Like I mean again, like thestories go on, continue to go on
.
Speaker 2 (18:39):
I think their listeners are going to be very
you know that this is relatableto them a lot.
A lot of people are dealingwith family members.
That it's hard, you know it'sparticularly hard.
One is that I think that as weage, none of us imagine we're
going to get to.
You know, we kind of imaginewe're going to retire and then
(19:00):
live happily ever after, andthat's kind of the story that
we're told, that we're just notprepared for that.
People.
That's kind of the story thatwe're told, that we're just not
prepared for that.
People aren't prepared for theidea that there could come this
stage of life.
And then, secondly, the person.
While they might not have beenprepared for it, they also now
have limited ability to adaptbecause of the changes in their
(19:22):
brain chemistry.
And so I always tell folks,especially when it's a husband
and wife, and the spouse issaying, oh well, my husband's
just grumpy, this is just theway he is, and it's like, okay,
well, it's more than that now,once there's been a diagnosis of
Alzheimer's or dementia orsomething like that, but it can
be.
I think people will relate a lotto the story that you're
(19:45):
telling.
With regard to your mom, I havea funny story that you
mentioned about your stepmom andthat she was very compliant and
so growing up my dad was verydominant and he did it his way
and we all kind of complied.
And I remember at one pointseveral of my siblings were
(20:07):
working with the law office andat one point my brother said to
me if we ever have to take dad'skeys away from him, I'm not
doing that, you can do that andwe kind of had a laugh about it.
What's funny with the story isis that when he got to a certain
point he lacked confidence andhe chose to give up his keys and
(20:27):
sell his cars.
He said I'm just not drivinganymore, and I would have never
guessed that in my entire life.
Because he loved driving, heloved traveling.
It was one of his favoritethings to do.
We as a family drove all overthe country as kids in a
motorhome and he just loved thattravel.
I think he loved the travelmore than the destination, and
(20:48):
the fact that he voluntarilygave up his keys was a huge
surprise to me, even to thepoint where I was saying, dad,
you can still drive, you can goto the grocery store.
And he's like nope, nope, notdoing it anymore.
I was like OK, so you neverknow what to expect, and you
might have the very, you know,gentle parent that all of a
sudden becomes very stubbornwith the onset of some memory
(21:13):
issues.
Speaker 1 (21:13):
Yeah, and she was.
I mean, it's losing yourindependence right for driving,
and she's fiercely independentand then being in the sandwich
generation, so at the same timewe're trying to take the car
away from my mom, I haveteenagers that are getting their
license and having fenderbenders, and you know.
So we've got all this going on.
And then again, when Imentioned my mom was in
behavioral health for thepsychotic break and trying to
manage the meds, and then withinthe year, my daughter is in
(21:36):
behavioral health for anxietyand depression.
So I mean, it's literally thesandwich, you know, is I'm in
the sandwich, the meat of thesandwich.
And then the other thing I wasgoing to talk about is so my
mother had all of her documentsdone.
She, you know powers ofattorney, trust, will,
everything, and so then I thenturned my focus on my dad in
Iowa and I'm like, hey, dad,we're going.
(21:58):
You know, just just check inhere.
Do you have all your stuff done?
No, not a single document.
And he's 80 and not a single.
And I'm like, wait a minute.
But he said, no, I'm not doingit, because if I do my will I'm
going to die and I'm not goingto do it.
So I'm like, okay, great.
So then I fly to Iowa and Ihire my own elder care attorney
and I tell him I'm like I'mgoing to meet with this guy
because the states areeverything's different, laws are
(22:20):
different in every state and Ijust need to know what's coming
because I'm going to prepareeven if you're not.
And then eventually he butagain, it took 18 months to get
him to come around to saying,okay, yes, you know, I agree
that we should do this.
I mean so then I started onthat, you know.
Speaker 2 (22:36):
That's so important.
And so if you're, if you're thechild, if you're a family
member, if you're, you know evenyourself that don't have those
legal documents.
I talk about the lifetimedocuments, and then you know the
after death documents.
Lifetime documents can be yourfinancial power of attorney,
your health care proxy, maybesome privacy waivers, maybe a
(22:57):
trust, but the idea.
Those are so important and itchanges when folks come to see
me in a crisis, and a lot ofpeople wait until the crisis
until they come to see me.
The cost, the effort, theanguish, the time that it takes
everything is easier andsmoother if they have those
documents in place before thecrisis, and if they don't, it
(23:21):
can increase the cost and thetime to do planning and to get
things in effect.
Sometimes we end up having torely on the judge or the court
to order the right person, andsometimes, if there's at all
sort of a family dispute, thejudge might just take a stranger
to make those decisions, and soit is just so important to get
(23:44):
those things in place before thecrisis.
Speaker 1 (23:45):
Yeah, and I also had the sibling issue.
So my sister and I I didn'tspeak to her for two years when
we were going through thisbecause she was being difficult
and she said, well, you dealwith it, I'm not dealing with it
, but then proceeded to tell mehow I was doing everything
incorrectly and badly and poorly.
And yeah, and I have a brother,but he had, he had moved away
(24:06):
and kind of wasn't really socialwith the family anymore.
So what my older law attorneyin LA said?
He goes, he's like you fit themold One has their handout, one
is checked out and one's leftwith doing everything, usually
the eldest daughter, which,hello, that's me.
So that's where I am.
Speaker 2 (24:21):
Yeah, yeah.
So talk to us a little bit more.
I know this is a big issue forlots of folks, but the stress of
that sandwich generation andyou know we talk about that it's
been around for a bit, thatthat's been a conversation.
But I think it's one thing tobe the sandwich generation when
you're just trying to make sureyou keep an eye on your elderly
(24:45):
parents, but it's another whenyou throw in the dementia
diagnosis and so that adds awhole different level to a
sandwich generation conversation.
So tell us a little bit moreabout the stress associated with
that.
Speaker 1 (24:59):
Where do I begin?
You know I had the distance had, so I'm fortunate that I am a
communicator and I haveresources.
So, I mentioned, my aunt hasbeen a nurse for 50 years, so
she's my medical confidant.
My husband has been a CPA for40 years and so anything to deal
with taxes or taxes or financesor accounts like he's my go-to
(25:21):
guy.
And then I I have, you know, afriend that's a financial
advisor that helped with allthat, and we're lucky that my
mom could not afford to stay inher house, even though she
thought she was a gazillionaire20 times over in her mental
state.
But once we sold her house inLos Angeles, right at the
pandemic bubble, she sold it fora lot of money and so now we're
(25:42):
able to take care of her andshe can be in memory care, which
is so expensive and that to metakes a huge, huge load off is
that she's got the money to payfor it Because, as you know,
medicare does not pay forlong-term care and you're either
wealthy enough to pay for yourown care or you're poor enough
to qualify for Medicaid and sickenough or, you know, the
(26:04):
forgotten middle is the one inthe middle dealing with children
and parents and you're in yourthe height of your career,
trying to experience and build,you know your nest egg, and then
everything goes sidewaysbecause your parents are not
behaving normally and peopledon't realize memory or dementia
is not just memory loss, itcould be behavior, it could be
(26:24):
mood, it could be executivefunction.
So people don't recognize itbecause it's not.
You know, mom forgot mybirthday.
I mean, it's so much.
It can be so much more thanthat.
Speaker 2 (26:35):
Yeah, I did want to clarify one thing that you said
as far as Medicaid.
Like you say, medicaid can payfor long-term care where
Medicare does not.
It is the reason why you saidthat correctly.
What I wanted to clarify wasand it's particularly because
it's something that we do in ourlaw office is that we help
people not have to go into thatyou had mentioned.
(26:56):
You're either rich and you canafford it, or you're too poor
and you can qualify for Medicaidand everybody in the middle.
That's what one of the thingsthat lawyers like I do is we
help people find those wayswithin the law to protect their
assets and still qualify A lotof what we do.
So I hear this out and you know, occasionally, if there is a
(27:17):
conversation about protectingassets, it's always oh well, you
have to do it.
You know, five years in advance, or you have to do it.
You know you do it this certainway.
A good portion of the planningthat we do to help people so
that they don't becomeimpoverished is what I call
crisis planning, meaning that wedon't actually complete the
planning until the crisis occurs, and in pretty much every state
(27:40):
, there's going to be optionsfor that.
Now, they're not perfectoptions, but it is one of those
things that I want to make surethere's not.
There's not there's that sort ofa myth that you have to be
impoverished to qualify forMedicaid.
There's many ways to protectthose assets in pretty much
every state in the United Statesand still qualify in their
(28:00):
legal ways.
There are ways that are builtinto the law or have built in
through the court process, wherewe've, you know, through court
proceedings and things like that, we've created these paths of
being able to protect assets andstill qualify for Medicaid,
which I think is very fair,because if you think about it,
(28:21):
you know if you have open heartsurgery, it's probably going to
be fully covered right byMedicare and by your
supplemental insurance.
But if you get Alzheimer'sinstead of heart disease, then
they say, well, you have to gobroke first.
Well, that's where an eldercare attorney can kind of level
the playing field and make surethat you don't have to become
(28:43):
impoverished because you got thewrong disease, and so it's just
something I wanted to clarify,particularly because it's
something that we do in our lawoffice.
Speaker 1 (28:50):
No, well, absolutely.
And it's so different state bystate, right.
So you have to be aware andpeople are again, people don't
plan and they have theirperception.
Well, I don't, I don't want totalk to an attorney.
Attorneys are expensive.
I'm like well, you're going toend up spending a lot more in
probate or in grief or in youknow lot more in probate or in
(29:13):
grief or in you know you need tofind the people that are
educated in this field to walkyou through the legal process
and understand what documentsyou need.
That's why I tell people don'tgo to LegalZoom to create your
legal documents because thenuances and the like you need.
That's why my whole book talksabout use, build your network,
build a team from friends,neighbors, family and paid
professionals right.
(29:34):
So it's so important to get theright resources.
Otherwise you're going tocreate a bigger problem for
yourself down the line.
Speaker 2 (29:41):
Yeah.
So that's one of the things Ialways like about my work within
this field is that it isusually the cheapest option.
So we say, okay, lawyers areexpensive, absolutely, and we're
not an exception to that.
We are expensive, but it'susually the cheapest option
because otherwise it's privatepay until you run out of money,
and that's not ideal.
(30:02):
I want to hear more about thebook I'm really interested in
and the idea that it's a guidefor folks and helping them
through these stages that youwent through and you had all
these resources and all thesefriends and family that you
could rely on.
A lot of families don't havethat, so I think your book can
really help out.
(30:22):
So the book again is DiagnosisDementia, your Guide for Elder
Care, Planning in Crisis.
Talk to us about how your bookcan help families that are just
starting out on this journey.
Speaker 1 (30:32):
Sure, it's Elder Care Planning and Crisis Management,
because, yes, we encouragepeople to have the conversations
and to start early, but, as youknow human nature, people just
are going to avoid what theydon't want to deal with, and so
you often end up in a crisis.
So my book is kind of acombination.
It's a it's prescriptive, so itkind of talks about what to do
(30:54):
and how to do it and why to doit, and it's also a memoir,
because it talks abouteverything I went through my mom
, my dad, my step-mom and all.
So it kind of it brings it homeLike this is this is probably
the worst possible scenario, butthis happened to us and this is
what can happen and this isthese are the signs we missed
and this is what we learned.
And so it's it's it's a very.
(31:15):
It's very well organized.
It's organized by section, bychapter, and that the the table
of contents is very clear.
So this is a little book.
It's like you can it's very youcan stick it in your purse
while you're at at the doctor'soffice waiting and review the
section on legal or the sectionon medical or the section on
finance, and also the resourcesthat I usually send people to
(31:38):
are.
You probably know the AAAs.
So the Area Agencies on Agingare all over the country and
they're federally funded throughthe state and they are a wealth
of resources for people to kindof figure this out.
And then the other thing that Ireally found or learned that's
so valuable are these aging lifecare managers, who are private
(31:58):
pay but they are social workersand nurses and they know the
system.
You have to learn the systemand the one system I had to
learn that I didn't want tolearn was Medicare for my mother
and all of that.
That was so, so horrible.
I'm still, I know enough to bedangerous, but it's very, it's
still very scary, the Medicarepiece Anyway.
So I like the AAAs and I likethe Aging Life Care Managers as
(32:22):
like the immediate kind ofresources to kind of start to
figure out what to do and how todo it.
Speaker 2 (32:29):
That makes sense.
We talk about it as a maze, wecall it the elder care journey,
but really it's the elder caremaze and I actually have a sort
of a picture of all thedifferent bad things that can
happen and it kind of, when youlay it out on a picture, it kind
of looks like that old kidsboard game, Chutes and Ladders,
where you think you're makingprogress.
(32:49):
You're almost to the top, andthen you slide all the way back
down to the beginning.
Speaker 1 (32:53):
That's perfect.
Yeah, I love it.
Speaker 2 (32:56):
Yeah, no.
Speaker 1 (32:56):
I mean we went through some chutes and then,
you know, worked our way back upthe ladder.
Yeah, that's a perfect analogy.
Speaker 2 (33:03):
Talk to us a little bit about the importance of the
caregivers.
You know and you were.
You had an extra strugglebecause you were at least at the
caregivers.
You know and you were.
You had an extra strugglebecause you were at least at the
beginning and still to someextent have been a long distance
caregiver and trying to go backand forth and set things up
where you're not living in thesame state.
But the importance of takingcare of yourself, of that
(33:26):
self-care, because it can beoverwhelming and the person that
you're trying to help won't behelped if you get sick, if you
break down.
So the importance of caring foryourself and making sure that
you're not overdoing it yourselfwhen you're trying to care for
a loved one with dementia.
Speaker 1 (33:44):
Yeah, absolutely.
I've always turned towardexercise to manage my stress and
like physical and mental stress, and so that has been something
I've done my entire life.
So I was never an athlete never.
I mean, I played on a couplelittle teams in junior high or
something, but I was not, youknow.
So I but I have always made itmy priority to exercise at least
(34:08):
30 minutes a day, like four tofive days a week, because that
is my, that's my reset, that'smy clarity, and even with every
one of my five pregnancies, Iworked up doing aerobics or
worked out right up until theday of delivery, and then I was
back in, back at it like a weekor two later because, again,
that's my, that's my absolutego-to.
And everyone's got somethingdifferent.
Maybe it's music or maybe it'scooking or maybe it's reading a
(34:32):
book, but, as you probably know,30% of caregivers die before
the person they're caring for,and so the one place that I
found that's absolutely fabulousis daughterhoodorg, and I am a
circle leader for daughterhood,so it's a virtual support group
that's national, but I also oneof the first support groups I
(34:52):
ever went to was through anelder law attorney in New Jersey
, because they offered one, andso AARP has them, and the aging
care, aging, I'm sorry.
The AAAs, there's the Y,there's plenty of support groups
out there, some churches, sofind a support group as well,
because you are not alone andeverybody wants to know that
they're not alone and thatyou're telling your story in the
(35:13):
book it makes it much morereadable that way, if you're
(35:34):
just trying to give tips andadvice, that really it's harder
to take in if you don'tunderstand the context of it.
Speaker 2 (35:43):
And I think, being relatable and people you know,
having you know similarexperiences, or even sometimes,
excuse me, lesser experiences,where they say, okay, well, she
had it even worse than I and shegot through this, so it's going
to be okay I think that's areally important part of your
book, in addition to the youknow the tips and the guide is
(36:05):
telling your story is part of it, so I commend you on that.
Speaker 1 (36:09):
Yeah, no, I mean, like I said, it's just, it's
unbelievable, this stuff that wewere just in just disbelief of
what we were going through.
And then I gave a talk not longago and the one woman on there
she said you know, nicoleinspired me to keep going,
because you know you're notalone.
You know, yes, it's difficultand everyone's different, but
you know there are people outthere going through the same
thing.
(36:29):
They understand, they relateand there are.
There is help out there.
But you do have to take alittle bit of extra effort and
energy, which you don't reallyhave, but it's worth it.
Speaker 2 (36:39):
Yes, Very good.
Well, as we start to wrap uphere, can you kind of give us
some key takeaways from yourbook and what what people should
expect if they buy your bookand how that would help them
with their family?
Speaker 1 (36:53):
Yeah, well, all through the book, I say have the
conversation, start theconversation, approach this
subject, because I had the samething.
These are my parents.
I don't want to ask about theirfinances and their health and
that's very personal and that'stheir thing.
It's not my thing.
But I had to steal documentsfrom my mother's office and rush
to the library to copy them,and then I wish I would have
(37:15):
stolen more things, I mean, butit was very, very difficult
because I felt like I wasbetraying her, I was being a bad
child.
But it in in the more time youhave.
You're going to need timebecause you can't show up for
(37:36):
Thanksgiving and at the table,be like, hey, let's talk about
death, and it just doesn't workthat way.
So start the conversation.
And then what I've had peopletell me is, if you're listening
to my right to me right now andyou read my book, you feel like
you're talking to me, because Idefinitely am a very
conversational tone.
Like I tell people, I'm not aphysician, I'm not a lawyer, I'm
not a nurse, I'm not a socialworker.
(37:58):
I am a daughter, talking fromthe daughter perspective,
sharing exactly the frustrationsI had and what we did, and then
what showed up next and how weworked together to handle it,
and there were a lot of tears.
I mean a lot of stress and Imean, like I said, I am still in
it every day.
I am living the life of thewhack-a-mole caregiver because
(38:20):
literally something comes upevery couple of weeks that I did
not even expect, and then Ihave to figure it out.
Well, tell us about where we canfind you on social media and
where we can get moreinformation and stay connected
with you books on Instagram andmy handle is at Dementia Book
Review and so once I startedreading more, I started posting
(38:53):
my little reviews, because whatI found was there are a lot of
books out there talking abouthow do you interact with someone
dementia, how do you behavior,how do you alter your behavior,
how do you care give and I waslike, yeah, that is all
important, but what aboutgetting the legal documents and
the financial documents?
And my dad had stockcertificates from the 80s in his
drawer and I mean you need tofigure that stuff out and ask
(39:16):
the questions and investigate,but you need time.
So, anyway, so, dementia BookReview on Instagram.
And I love LinkedIn, nicoleSmith, type in or just go to my
website and then that links you.
But I definitely am a connectorand a speaker and I love
LinkedIn, so connect with me onLinkedIn if you're on LinkedIn.
Speaker 2 (39:32):
Very good.
So the primary website is NJSsorry, I'm sorry NJSmithBookscom
with an S at the end and thebook title is Diagnosis Dementia
your Guide to Elder CarePlanning and Crisis Management.
Thank you so much, nicole, forcoming on, and we appreciate you
with all your insight.
Speaker 1 (39:53):
Thank you.
I learned some things today too.
I appreciate it.
Speaker 2 (39:56):
Now, if you enjoyed this podcast, don't forget to
subscribe.
We're on anywhere you can findpodcasts, or, if you prefer, you
can go to our website atmanorlawgroupcom, or we're also
on YouTube.
Thanks, Thanks.
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