In this conversation, Bob Mannor, an elder law attorney, interviews Tami Anastasia, a counselor with a dementia-focused counseling practice. They discuss the challenges faced by families dealing with dementia and how to navigate them.
Tami emphasizes the importance of educating families about dementia and its effects on the brain. She helps families understand that the behaviors exhibited by their loved ones with dementia are not intentional but a result of the disease. Tami also highlights the significance of identifying triggers for negative behaviors and finding ways to minimize them. Additionally, they discuss the difficulty of making decisions for parents with dementia and the need to involve them in the decision-making process.
The conversation focuses on the challenges faced by families dealing with dementia and the importance of effective communication and planning. The principal themes include decision-making, involving authority figures, understanding benefits, managing family dynamics, and the importance of self-care for caregivers. They also highlight the book 'Essential Strategies for the Dementia Caregiver: Learning to Pace Yourself' authored by guest, Tami Anastasia.
Takeaways
- Identifying triggers for negative behaviors can help families preemptively plan and minimize those behaviors.
- When making decisions for parents with dementia, it's important to involve them in the process and find ways to make them feel included and valued.
- Supporting caregivers and providing emotional guidance and care strategies are essential in helping them navigate the challenges of caring for a loved one with dementia.
- Understanding and accessing benefits, such as veterans benefits, is an important part of legal planning for individuals with dementia.
- Family dynamics can become more pronounced when dealing with dementia. It is important to navigate these dynamics and focus on the best interests of the person with dementia.
- Caregivers should prioritize self-care and seek support to avoid burnout and maintain their physical, mental, and emotional well-being.
Host: Attorney Bob Mannor
Guest: Tami
Guest: Tami
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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 MOR
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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.
Welcome back to Advice fromyour Advocates.
I'm Bob Manor.
I'm a nationally boardcertified elder law attorney in
Michigan and we have what wecall a dementia-focused practice
, and so I'm really excitedtoday that we have Tammy
(00:23):
Anastasia as our guest.
She also has a dementia-focusedpractice in counseling, so I'm
really excited today that wehave Tammy Anastasia as our
guest.
She also has a dementia-focusedpractice in counseling, and
I've been following Tammy for along time.
She has some really greatinformation.
Welcome, tammy.
Speaker 2 (00:35):
Well, thank you, Bob, for having me.
It's a pleasure to be here.
Speaker 1 (00:38):
So I appreciate you and all of the work that you do.
Can you tell our audience alittle bit more about you and
what your background is?
Speaker 2 (00:46):
Sure.
So I have a master's incounseling and I started a
private practice in 1991 andfocused a lot on wellness and
over the years dementia and Ihad.
My grandmother got diagnosedwhen I was in high school,
college and back in the day theycalled it senility.
(01:07):
We didn't even know what it wasright.
And now fast forward 20, 30years later and I saw my father
go through so much sadness andmy grandmother was the most
loving, kind person and it justchanged her.
We didn't even know who she wasby the time she passed away.
So by coincidence there was agal in the area who wanted to
(01:31):
retire and with my skill set shesaid would you like to take
over my support group?
And then I just changed mypractice.
The focus all dementia relatedsupporting caregivers, family
caregivers, all dementia-relatedsupporting caregivers, family
caregivers, the primarycaregiver and I provide dementia
guidance, emotional support,care strategies and counseling.
(01:52):
And I will also work withpeople who've been early
diagnosed with dementia, who arein the early stages, to talk
about what it's like to havethis diagnosis.
And then I facilitate severalcaregiver support groups in the
Bay Area.
I'm out here in California andthen also do a lot of different
(02:12):
speaking events, educationalevents on the different topics
related to dementia andcaregiving.
Speaker 1 (02:19):
And so it's great that you have those speaking
events and that's kind of how Iheard about you or learned about
you a couple of years ago now.
But you're able potentially todo trainings, even virtually
right, or to even do supportgroups and things like that.
Virtually you don't have to begeographically within your area,
(02:41):
correct?
Speaker 2 (02:41):
Right, you know COVID was hard.
Lots and lots and lots of notso good things about COVID.
But the one blessing for me wasthat now I can service, I can
counsel people in any statebecause of the virtual as well,
as I do hold a couple of supportgroups myself.
Through my own practice I dothem virtually as well, so that
(03:03):
again I can have people fromdifferent states.
So it's the next best thing.
I used to do in-person andphone sessions.
Now it's in-person, it's virtualand also phone sessions, but I
like the virtual because I canstill see that name, that face,
and you can see, read the bodylanguage and just a different
(03:24):
connection.
But I think it's equally aspowerful as if I was meeting
them in person.
Speaker 1 (03:31):
Okay, that's so, you know.
It's interesting, as you weretalking about working with the
families.
I think it's so difficult forfamilies when they've got a
diagnosis of dementia because ifthey don't have that context,
if they haven't worked in, youknow, the healthcare field or
(03:51):
even some folks in thehealthcare field, it's just so
difficult to take this personthat you you know, might be your
parent, might be your spouse,and you have these expectations.
You have all of this historyand then have this change, which
is fairly dramatic at times.
How do you advise families onthis?
(04:12):
How do you help them kind ofwrap their head around how to
interact with their loved oneand how to deal with their own
grief, as well as many otheremotions, I imagine?
Speaker 2 (04:30):
Correct.
There's a wealth of emotionsand they fluctuate and a lot of
the fluctuation is very muchaccording to how the person is
progressing and the behavioraland the cognitive changes.
So typically a phone call willbe my loved one has dementia and
I don't know how to deal withthis, or I don't know how to
deal with that, or I don't knowwhat to do with my anger.
I don't know what to do withthe grief and loss.
(04:52):
So it really fluctuatesaccording to what the needs are,
and I'm pretty much whateverthe need is.
My goal when I work withsomebody, whether I meet with
them once or 30 times, it's tocan I educate them, can can they
learn, get more insights, moreunderstanding, and then always
try to equip them withstrategies on how to deal with
(05:14):
the cognitive and the behavioralchanges, taking into account
who the person was pre-dementiathe relationship pre-dementia
and now the relationship theperson with dementia and the
relationship with the personwith dementia.
Speaker 1 (05:31):
So you know, I think that's a really important point
that you just made is therelationship before, because a
lot of times I've been workingwith families that have a loved
one with dementia for 15 yearsor longer and the idea here is
that a lot of times there isthat emotional for lack of a
better term baggage.
(05:52):
In other words, it could be aparent that maybe you had a
difficult relationship with,sometimes husband and wife.
There's always going to be somechallenges in any kind of
marriage and so often I hearfamily that describe what's
happening and then they'll say,oh, he's just being stubborn, oh
, that's my mom just beingstubborn.
(06:13):
How do you help families kindof break through that to say,
okay, this is different thanjust being stubborn, this is
different than their you know,ability to rationalize and make
good decisions?
Because in my experience a lotof families really struggle with
that and really have adifficult time moving beyond the
(06:34):
history, all the things thatled up to you know, whatever
state that we're in, if it was80 years of history of you know
since they were born and all ofthat, how do you help families
kind of move to the point wherethis is not the same
relationship as it was before?
Speaker 2 (06:52):
Yeah, that's a great question and that's the bulk of
my work is really educating them.
When we get a diagnosis ofdementia, you really have to
educate people what dementiadoes to the brain.
And we have that.
Let's go back to therelationship pre-dementia.
I can't tell you how many timespeople say my husband just
(07:14):
won't cooperate or they refuse,and I have to remind them they
may not be able to process theinformation, they may not
remember the information.
It's not that they're refusingintentionally.
So we have to separate what wasand you have these feelings and
emotions from what was that cancarry over into dementia.
(07:34):
And, quite frankly, what I dotry to do is sometimes I try to
use the dementia to heal thepast and now deal with the
present.
So a lot of it is reallyeducating them, getting them to
understand that if they'reargumentative, if they're
accusatory, if they're combative, it's now because they have a
(07:55):
brain disease or brain damage.
Their brain doesn't have thatcapacity to pre, preplan and
figure out ways to manipulate.
They're not intentionally tryingto upset you and it's really
understanding how dementia isattacking and affecting the
(08:16):
brain.
And these are behaviors nowbecause of dementia, even though
it may appear.
But they're two different, verydifferent.
And when families, especiallythe caregiver, family, primary
caregiver, sees that, it allowsthem to detach and not take
personally what's being said anddone and they learn to react
(08:40):
differently, they learn torespond dementia friendly versus
reactive and anger.
Anger will still always bethere because there's a lot of
emotions associated withdementia, but it won't be as
intense and won't be as frequent.
But that education piece iswhat brings us over to the other
(09:02):
side of now, relating to myloved one as a person with
dementia.
Rather than assuming they haveall this pre-planning,
premeditated uh stuff going onand you, you have to make that
distinction, otherwise it willbring you so down and you will
continue to engage and it willignite and cause a lot of
(09:26):
friction between you and yourloved one that you're taking
care of.
Speaker 1 (09:31):
You know, there's a couple of things there that I
really want to highlight thatyou just said, and one of them
is, you know, dealing with inthe long-term care industry.
They often would call itbehaviors.
So it could be, you know.
Sometimes they call itsundowners, sometimes it's just
aggressiveness, maybe wandering.
You know, certain behaviors andwhat we found is that there are
(09:53):
things that can be done to sortof lessen those behaviors.
And I'm not talking about drugs.
Obviously there's drugs andthat's what the medical field
tends to want to look at.
But there's other things.
I'm guessing that you couldgive advice to families on how
to minimize those negativebehaviors.
Speaker 2 (10:11):
Right, right.
So what I try to do is get.
All behaviors are a form ofcommunication.
Whether we like it or not, it'sall a way of communicating a
need and we have triggers.
For as unpredictable asdementia can be, there can be
what we call triggers, causes orpatterns.
(10:31):
So I'm going to help familiessee if we can figure those
things out.
It's things such as a word Iused, a facial expression or
pain or an unmet need, and if wecan identify what some of those
patterns are, then we canpreemptively either plan for it
(10:57):
or possibly prepare or get ridof the trigger altogether, which
will now not trigger thatbehavior.
So it does take a lot ofobserving and caregivers my
family caregivers and my privatepractice they're so observant
they don't know what to do withthat information.
So how can we use thatinformation to educate them and
I always say, to outsmart thedementia?
How can we take thatinformation to outsmart the
(11:21):
dementia?
Either by pre-planning andprepare for repetitive questions
the same question over and overprepare and or circumvent the
behavior by understanding whatthe pattern or the cause might
be and prevent it from happening.
So let me give you an example.
There was a gentleman fatherjust loved having his son come
(11:42):
over.
But every now and then thefather would just kind of lose
it like get out of my house, youdon't belong here.
So for about six weeks I justsaid, you know, let's just
monitor and write down and seeif we can find a pattern.
Well, it turned out, every timehis son wore red we got an
adverse reaction.
Well, he was in the military.
So you can start to put thepieces together.
(12:03):
He never wore red again over tothe house and, believe it or
not, those triggers.
Now we don't have the sonwalking into a volatile
situation because we couldidentify one of the triggers.
Speaker 1 (12:17):
That's amazing and that's kind of the point of the
work that you do, which is thatwe really have to kind of take
time and listen and really diginto the circumstances, because
who would have in some kind ofcare setting?
They are very busy and theyprobably don't have the time to
(12:44):
just sit down and talk to thefamily and really dig into these
things to figure out what thosetriggers are.
I have a story that some of mylisteners I'm sure heard me tell
this story before.
But we had a gentleman with theLewy body dementia where we
were representing the family,and with Lewy body, as you know,
there's often somehallucinations, maybe some
(13:09):
aggressiveness, things like thatand so he had gotten to the
point where he needed careoutside of his home.
It wasn't safe for him to behome with his wife anymore.
It could have been dangerousfor her he was a large man and
if he got aggressive it couldhave been dangerous her, he was
a large man and and if he gotaggressive it could have been
dangerous.
And so but now we still have toprotect the caregivers, right?
Just because we're in a caresetting doesn't mean that we
(13:30):
can't and we don't want to.
We didn't want him to bedrugged so that he was sleeping
all the time.
We wanted to have him have thebest quality of life possible.
What the what the medical staffand the caregivers couldn't do
is something that my staff wasable to do, which was to sit
down, talk to the family, getmore information, kind of like
(13:51):
you did with the discoveringthat it was the red shirt that
caused the trigger.
And what we found out was thathe really loved old Western
movies and whenever he had thesebehaviors, if we popped in an
old VCR of an old Western movie,he immediately sat down, calmed
down, and that would deal withthat.
So we were able to educate thestaff, the caregivers hey, if
(14:14):
there's ever a problem, there'sa stack of tapes over here.
We got this old VCR, pop it inand, and you know, direct him
over to it.
And it worked like a charm.
And, yeah, he, he lived anotherseveral years after that and we
never had any issue with him.
You know being aggressivetowards others because they we
(14:34):
were able to learn what you knowwhat was something that would
calm them down, and that'ssomething that I don't fault the
medical staff for, because they, frankly, don't have enough
time to do that kind ofinvestigation, like you are able
to do with families.
Speaker 2 (14:49):
Yeah, and I go for a deep dive.
I have a counseling background,so I know the questions to ask,
I know the patterns to look for.
I don't ever assume I know theanswers.
I just go searching for all theinformation as much as possible
to see if I can help put thepieces together, because
ultimately that's what we'redealing with.
(15:10):
You have this person that has apast and you know, as dementia
progresses they may relive theseold memories.
So I'll go looking for what dowe know about their past, their
personality?
So I'll go looking for what dowe know about their past, their
personality.
But the flip side is equally asimportant.
What are the things that bringthem joy, what are the things
that make them smile, what arethe things that make them happy?
And before we place someoneinto a care community, what I
(15:35):
like to do is prepare myfamilies as much as possible.
This is the information we'regoing to want to give the care
community.
These are the things to beaware of.
These are the things and weplot it out, I mean, to the very
detail.
This is the story we came upwith what we're going to tell
them, when we tell them, whenwe're going to move them.
I mean, it's so fine tuned, atleast in my practice, because of
(15:58):
the very things you just shared, and that is any transition is
a difficult transition.
Any move is a transition, but wehave two people involved.
It's also equally heartbreakingfor the family to have to move
their loved one into a carecommunity.
So you're dealing with yourloss and you're dealing with the
sadness.
(16:18):
It may be the first time you'veever lived alone and now I've
also got to support my loved one.
So the more information we cangive the care community, the
more prepared we are, the moreknowledgeable we are everybody
involved, the better and theeasier the transition will be.
No two transitions are ever thesame and we also prepare for
(16:42):
the transition not going well,so that the families have a
realistic expectation of how dowe manage this now if it goes
sideways a little bit.
But we have to provide the carecommunities also with that
valuable information that youjust shared to make this as well
(17:03):
, make it as good as it possiblycan be.
Speaker 1 (17:08):
You know, it occurs to me this is interesting that
your job and my job isn't thatdissimilar, because that is our
goal is to try to make sure thatwe get in front of the problems
.
We can listen and deep dive, toget you know, to discover, and
one of the things that we findand I know that I suspect that
you often need to have theseconversations with the family,
(17:31):
just like I do which is thefamily often, especially if it's
the children.
Sometimes it's the spouse, butparticularly if it's the
children that are the ones thatneed to step up and start making
some decisions, because theparent maybe isn't capable of
that anymore, and so that'sdifficult, that's really
difficult to treat your parentin such a way that they're not
(17:57):
you know, you're not deferentialto your parent.
That's kind of how most of uswere raised is we're deferential
to our parents, and so thereality is I see this nearly
every day of meeting with thefamily and they say well, I keep
trying to convince my dad, toconvince them you might, on any
(18:19):
given day, be able to have thatconversation, but if their
memory is such where they don'tremember what they had for
breakfast and they don'tnecessarily even remember who
you are.
Sometimes it does not do anygood to try to convince or use
logic or reasoning, because theymay not actually fully be able
to reason anymore.
But even if they can, if theyhave that time of lucidity, they
(18:42):
will likely forget it.
And so this is very frustratingfor families because they say,
okay, I met with a familyearlier today and the
conversation was okay mom anddad who both have dementia.
In this particular case, youknow, you really can't live
alone anymore.
It's not safe for you to livealone.
We either need to bringsomebody into the house or we
need to go into a moreprotective setting.
And apparently they hadconvinced them it was all set.
(19:06):
And then, when the day came,dad said no and it was all over,
and they backed off.
And the problem with that isthe way they described where mom
and dad were at on their memoryissues.
There was no way that you'regoing to be able to get
consistency where we say oh, yes, I remember now we decided
we're going to move intoindependent living.
(19:27):
That's not something that thefamilies often can easily wrap
their head around of.
This isn't necessarily,unfortunately, about convincing
someone, because even if you canconvince them, it may change a
week from now, or two weeks fromnow, or tomorrow or in 30
minutes.
Speaker 2 (19:46):
And that is a huge problem.
And so you know, we've all been, we've all, most of us have
been raised to respect yourelders, to respect your parents,
and you've got two differentdynamics.
You have spouse dynamics andthen you have adult children and
parent dynamics.
And the adult children wereference them as being the
sandwich generation.
(20:07):
But, what happens is you'reexactly right.
We can have a lucidconversation, they agree, and
then the families hold on tothat and the problem is it's for
that split second.
And so we have to be again,outsmart the dementia.
We have to present it in a waywhere we don't use reason and
(20:27):
logic, but that we find a way tocommunicate with them that
appeals to them, to make themfeel they're part of the
decision.
But yet we're navigating itbehind the scenes.
But I see this all the time.
I just did a speaking event theother day yesterday and the
woman said oh my God, myhusband's so mad at me.
(20:48):
I said well, what happened?
And she said well, is itpossible?
So they were cleaning the house.
She took a lot of his things.
He said no problem, they can goto the Goodwill.
Well, she got home, you stolemy things, you gave them away,
and he's been upset ever since.
And she says but we had thisconversation.
I go, it was fleeting.
(21:09):
So I teach families okay, wedon't clean anything in front of
them, even if they agree, wedon't remove anything.
So when it comes to the legalstuff, we have to be strategic
in how we can't convince them,but what we can do is make them
feel a part of a plan that isbeneficial for everybody.
(21:32):
For example, scamming is a bigproblem.
Speaker 1 (21:35):
Absolutely.
Speaker 2 (21:36):
A lot of older.
My parents, your parents, wedon't want our money being taken
by anybody older.
My parents, your parents, wedon't want our money being taken
by anybody.
So we might say you know whatto protect our finances better
or if anything should happen andmake sure no stranger gets
somehow we have to find ways toappeal to their sense of and
(21:56):
then participate in it.
But if we bank on themremembering and being supportive
, oh my gosh, then there's somuch conflict.
And then it's that controlissue and it's figuring out how
to present what needs to be donevery cleverly.
We have to be very clever andvery strategic.
Speaker 1 (22:18):
So in my practice that's something that we're
always dealing with, because Iwant someone in the family to
ask as many tough questions tome as they can.
I want somebody to do their duediligence and ask very
difficult, tough questions andreally go through every scenario
to make sure that theyunderstand.
But mom and dad maybe, if well,you know, if there's one of the
(22:43):
parents with dementia, they'reprobably not capable of going
through that level of detailbecause I have a lot of
information to convey.
One of the things that lawyerstraditionally do is we only meet
with the client.
We don't meet with anybodywho's not the client.
Well, I try to look at it as myclient is the elder.
My client is the possiblylikely frequently the person
(23:05):
with dementia.
That's who my loyalty goes to.
Well, I also know if I gothrough all the details I need
to go through with them, they'regoing to get overwhelmed.
Speaker 2 (23:14):
They're going to get scared.
Speaker 1 (23:15):
They're going to be, frightened, and so I want to
have the family understand andask all the tough questions.
But when I'm talking to theperson with dementia, we
typically narrow it down tothings like would we rather keep
decision making in the family?
Do we want to keep thegovernment and the courts out of
family matters?
So keep family matters in thefamily, and that is typically
(23:38):
something that most folks canunderstand.
Or if they were a veteran andsometimes we're dealing with
veterans benefits, things likethat to say, well, you, you know
, you served our country, youearned this.
We want to make sure that thosebenefits that you earned way,
that you get the benefits you'reentitled to because of the
service you provided to ourcountry.
(24:03):
But you know a lot of the sortof working around it to say,
okay, they need to understandsome concept of it, but not as
much detail as hopefully thekids would want to know.
Speaker 2 (24:14):
Yep, and you bring up a great point.
Sometimes I will encourage thefamilies to bring in an
authority figure, let's say theattorney.
Like yourself, you know thereare still older.
Our older generation still hasa respect for authority.
Maybe it's a medical doctor,maybe it's an attorney like
yourself, maybe it's a financialplanner, but sometimes that is
(24:35):
what we do because they'lllisten to you and and they know
you have their best interest atheart.
So there's many differentstrategic ways to do it, but
you're absolutely right.
You know we can't go into thefine, fine, fine detail
depending on how advanced thedementia is.
Right, so it's, you're doing abeautiful job.
(24:57):
I mean, it's just, I lovehearing these stories because
we're helping the families,we're assisting the families to
get things done that need to bedone, that protect everybody
involved, whereas, you know,when we're dealing with families
and people living with dementia, they don't know what.
They don't know because of theimpaired brain.
(25:17):
So when I hear you talk, Ithink, oh my gosh, it's
beautiful what you're doing,because that is how we can get
things done.
We have to scale back thedetail for people living with
dementia because the more wetalk, like I tell people, the
less we say the better things,and then who knows where their
(25:42):
mind's going to take it, theymisperceive it, they start
distrusting you.
So it's beautiful to hear howyou're handling that, because
it's spot on right the less wesay, the better.
Speaker 1 (25:50):
And one of the things that I always uh offer uh to
the family is to say so, let'ssay we're dealing with something
like, um, driving or taking,you know, making sure that
someone's not driving.
I always say okay, don't be thebad guy, son or daughter, you
don't need to be the bad guy.
Make me the bad guy, make thedoctor the bad guy.
We usually make the doctor butsome other professional, and
(26:12):
when it comes up we say, oh,it's not me, it's the doctor
said you can't drive, it's thelawyer says you can't drive
because of the liability, youknow the liability associated
with it or you know whatever itis.
But I have no problem if I needto be.
You know every case is going tobe a little bit different,
every family dynamics is goingto be a bit different, but I
often want to give a rationaleto the family so that they don't
(26:33):
have to be the one that tookthe car keys away.
Maybe they physically did, butthe blame can go on some outside
or outside of the family.
Speaker 2 (26:41):
That's exactly right, that's exactly right.
That's exactly right.
And I'm also the person toblame.
Put it on me right, Because thecaregiver is already getting
dumped on enough.
The caregiver is to blame foreverything that's wrong in their
life and, you know, thecaregiver is doing the best they
can to support them, to providethe best care, the best love,
and then their loved ones justgrilling them and I think, oh my
(27:05):
God, with driving and someother decisions that have to be
made, we don't want you to bethe bad guy.
And that's exactly.
We deflect it right.
So, then the caregiver couldjust normalize and validate.
I'm so sorry this happened toyou, but they aren't the bad guy
.
Let the DMV be the bad guy, yoube the bad guy, me be the bad
guy, but I really want toprotect family caregivers.
(27:27):
They deal with so muchdynamically.
What can we circumvent andfigure out another way to deal
with it so that they don't quoteunquote, become the bad guy for
every situation and theystruggle with caregiver guilt as
it is?
So, why not deflect it and let'slet somebody else be the bad
(27:48):
guy and take this off your plate, because we're going to have to
pick up the pieces anyway?
But I don't want the the personliving with dementia to blame.
They'll blame them anyway.
But how much better me as thecaregiver, knowing.
Oh, somebody else dealt withthis and it's not me.
I just have to pick up the.
Speaker 1 (28:06):
I want to ask you more about that family dynamic
in a second, but I want to saythat I really enjoyed this book
that you wrote.
It's Dementia Caregiver,Learning to Pace Yourself, and
Pace has a specific meaning foryou.
But it was an excellent book.
I really enjoyed it.
Before we get into the book, Ihave one last topical question,
(28:27):
which is what about thosefamilies Dealing with this as
difficult?
So the family dynamics wherethe family doesn't agree, so
that you know sometimes it's thecaregiver, the child, sometimes
it's the, you know the child,who's nearby, who's providing a
lot of support and help for theparent, and then the out of town
or out of state family.
(28:48):
How do you have any advice fordealing with that dynamic which
comes up so often, where therebecomes conflict within the
family?
I think often because there'snot an understanding or there's
a bit of denial about what momand dad need.
So any advice on that?
Speaker 2 (29:04):
I'm glad you brought that up.
So family dynamics I deal a lotwith and in my private practice
I primarily work with theprimary caregiver and what
everybody needs to sort of beaware of is family dynamics come
to the surface when dementia,somebody has a dementia or when
there's a crisis, andunfortunately, a lot of the
(29:28):
dynamics have been in placesince they were kids.
We have the one who's thebackseat driver, we have the one
that is uneducated but thinksthey know it all.
We have the one that's verygreedy, doesn't want to spend
the money because there'll bemore money for them when the
parent passes away.
So I'm going to be very honest.
I take care of my primarycaregiver and I say I get a lay
(29:51):
of the land of all the players.
We can invite them to join usin putting a plan together, but
we also put a plan in withoutthe players, because my family
caregiver, who's the primarycaregiver, doesn't have the
energy to try to convincesomebody in the family who's
(30:11):
always been this way.
We invite them.
If they're not going toparticipate, don't want to
participate, we kind of outsmartthem too, because dynamically
we need to take care of theperson who has dementia.
We have the dynamics in thefamily.
So I bring to the surface theseare the dynamics.
Have the dynamics in the family?
(30:33):
So I bring to the surface theseare the dynamics.
How are we going to?
What plan are we going to putforward?
So a lot of times it's changingthe expectations of the family
members, not so much trying toconvince them.
We're going to invite them, wewant them to be a part of it.
But, as typically happens, theyall have their own issues.
So we're going to put a plan inplace regardless and make sure
that everything is in place thatneeds to be in place.
(30:54):
And a common one is oh, Italked to dad, or I talked to
mom and she sounds great on thephone and I said, well, let's
move them there for a week andlet's have them experience it.
And then I hate to say it, thisis a horrible thing to say, but
greed is a big issue.
Yeah, and there are some familymembers who say, no, mom
(31:14):
doesn't need that, mom doesn'tneed this.
But truthfully, mom needs it.
You're not involved in the care, so we'll do what has to be
done to take care of them.
I always want my familycaregiver.
I how can I say this?
I always want them to be awareof the choices, but we may not
have them participate in thechoices because we can't get
(31:35):
done what needs to be done.
So we're going to find otherways to support the family
caregiver who's the primarycaregiver, as well as what needs
to be done in the best interestof the parent or the person
living with dementia.
Speaker 1 (31:49):
But oh, they come flooding to the surface the
dynamics, yeah, and I think youknow you're right, of course
that there are a certainpercentage of family members
that are coming in with thewrong motives.
In my experience, a good amountof time though it's the family
each has their own idea of whatis the right thing to do, and
(32:12):
they each have, you know,they're getting input.
I always say I call it thebarbershop advice.
I was in the barbershop one daya few years ago, and you know I
try not to interrupt otherpeople's conversations, but the
gentleman came in and he was,you know, talking to the barber,
which, at men's barber shops,that's something that people do
(32:33):
They'll just come in and chatwith the barbers.
So they were chatting and theysaid well, I don't know what
we're going to do.
My mom can't live alone anymore.
I'm not sure how we're going toafford all this.
And the barber said oh, I'lltell you what to do.
He said well, all you're goingto do is you're going to take
all the money out of her account, put it in your account.
And I had to interrupt him atthat point and I said no, really
(33:00):
, that's a really bad idea.
That's not going to work.
That's going to cause much moreproblems than the value that
you're going to get out of it.
And I usually don't try tointerrupt other people's
conversations, but I feel likethat's where a lot of the
confusion and sometimes conflictcomes from is it's a lack of
information, a lack of notknowing what the options are.
And, like you say, I thought itwas a great answer to say let's
try to get the family together,let's sit down, try to come up
(33:20):
with a plan together, try toinvolve everybody in the plan.
Of course, some people aregoing to be more involved in the
plan than others, but at leastthat's a possibility.
Sometimes it's just a matter ofeverybody's getting somebody in
their ear.
Everybody's getting differentinformation.
People watched a movie, a TomHanks movie or something, and
they have it in their head thatthis is what reality is.
And if we just get everybodyaround a table that's my
(33:45):
favorite thing to do in thesetypes of situations and then
we'll see if somebody's beinggreedy, I mean, it'll come out
if what the real motive is beinggreedy or some other bad motive
.
But sometimes it's simply thatthey just got.
You know, there's so much badinformation when it comes to
this type of planning.
Speaker 2 (34:01):
Well, and you have denial and and for people who
are in denial, it is bliss forthose people who are not in
denial.
So there's just so manydynamics, you know, and in my
case, in my private practice,the one who's usually the
responsible child is the one whoends up burdening and taking
all of the responsibility, andthe family's used to that person
(34:24):
stepping up.
And now mom or dad has dementia, right, and then you also have
the parents.
You know, our dad has dementia,right.
And then you also have theparents.
You know, what did they leaveto whom?
And there's just so manydynamics.
My first goal is always let'ssee if your siblings want to
participate.
We can invite them, we have togive them, we have to hear of
(34:46):
their voice, we have to hearwhat their thoughts are.
But we also have to keep inmind that everybody is going to
perceive it differently andeither they join us or they
don't.
That's a choice they're goingto make, but we still have to
put in place what needs to beput in place.
But for the family caregiverI'm going to speak on their
(35:07):
behalf it is really difficultand very upsetting when I'm the
one taking care of mom and dadand then they live miles away or
they don't come and visit andthey downplay everything.
It dismisses what the primarycaregiver is going through, and
we have to acknowledge what theprimary caregiver is going
(35:29):
through.
We have to.
They're the ones that are inthe trenches, they're the ones
that are doing this, and so I amgoing to do what's in the best
interest of the family caregiver, if it means we need to
communicate this to everybody,but let's not have expectations
and depend on these people whoare not dependable on these
(35:49):
people who are not dependable.
Speaker 1 (35:50):
I think that's 100% right, and that's the thing is.
I think most people have noidea how difficult it is.
We often have.
You know, we always preferpeople that are planning ahead
or planning in a non-crisissituation, but a good portion of
the people that come see usit's a crisis, and so they've
been to the hospital, maybethey've been to rehab for a few
weeks and now the thought isokay, what are we going to do
(36:13):
now?
And often the families say ohwell, we're just going to take
turns and we're going to bringmom home and we're going to take
turns.
Speaker 2 (36:20):
And.
Speaker 1 (36:20):
I say, okay, I can see that working, because your
sister's flown in fromCalifornia and you're going to
take some days off of work andthings like that.
I can see that working for aweek.
Maybe I can see it working fortwo weeks.
It is, first of all, I thinkuntil you do it, you're going to
be shocked at how difficult itis.
And number two is that'sprobably not sustainable for six
(36:42):
months, six years, 10 years,you know, whatever it turns out
to be, and so it's somethingthat it's really difficult,
because people in crisis oftenare just trying to say, well,
how do we get through the nextfive days?
And really that's the time tostart thinking about.
Okay, we can't just think aboutfive days.
We got to think about theforeseeable future here.
Speaker 2 (37:04):
Yeah, yeah, exactly.
And let me go on the other sideof the coin.
And there are some families.
It's beautiful to watch, it'sbeautiful they all come together
.
I don't want to insinuate everyfamily, but there are
underlying dynamics that come tothe surface and we have to play
with those dynamics and againfigure out how we're going to
(37:26):
navigate this, given who theplayers are in the family and I
have this phrase right we havefantasy family and we have
reality family.
And so we've got to sort outfantasy family from reality
family, because we're going tohave to deal with reality family
.
But we can invite.
We can invite.
But whether they participate ornot is going to be a choice on
(37:49):
the other players Right.
But whether they participate ornot is going to be a choice on
the other players, right.
But when it is magical, when Iwork with a family and it works
out great, it just it makes myheart sing, right.
But I also know that the normis we have a lot of different
people and family dynamics thatcome to the surface.
How do we juggle it?
(38:10):
And that's what we're reallytrying to do On top of now
trying to navigate caring for aloved one with dementia, which
is so time intensive anyway, andthen I've got to try to figure
this out with the siblings onthe side.
So it's a lot, it's veryoverwhelming and it's a lot for
the caregiver to deal with.
(38:30):
But I'll do whatever it takesto help support the caregiver
and create what we need tocreate.
That's in the best interest ofthe person living with dementia,
and I'm going to say mycaregiver, because they're in
the trenches.
Speaker 1 (38:45):
Let's talk a little bit more about your book.
It's an excellent bookEssential Strategies for the
Dementia Caregiver Learning toPACE Yourself and I believe you
probably came up with thatacronym for PACE why don't you
tell us a little bit more aboutthe book and what you mean by
that?
Speaker 2 (39:01):
Right.
So prior to COVID I had put amanuscript together and I just
started writing down all thethings that reoccur, that I hear
in my private practice, that Ihear in my support groups that
I'm asked when I do speakingevents.
So I had this manuscript forabout two, three years, but I
never had time to finish it.
Well, covid hit, so I thoughtnow's the time to get the book
(39:24):
published.
So the book is really trulybased on what I hear in my
private practice constantly,again the support groups, and
there's certain things that keptcoming up.
And one thing that's keptcoming up is my loved one gets a
diagnosis of dementia.
We leave the office and nowwhat do we do?
And I thought, wow, let meeducate people on the behavioral
(39:48):
changes, the cognitive changes,the relationship changes, the
cognitive changes, therelationship changes.
So I walk people through thebeginning all the way to the end
of life journey on how to dealwith, what to expect about
what's going to happen to yourloved one, what's going to
happen to the relationship, andit's chock full of strategies.
The PACE acronym came upbecause we don't know how long
(40:11):
this journey is going to take.
And they come out of the gateand they're depleted, you know,
they don't know how to deal withrepetitive questions, how do I
deal with the accusations andhow do I deal with the
uncooperativeness?
And I thought, oh my God, somany of my families that I work
with are so exhausted alreadyand I think this may be a five,
(40:33):
six, seven year journey.
So the concept PACE is how tosurvive this journey without it
being at the expense of yourphysical, mental and emotional
well-being, and that's how PACEevolved.
And that's how PACE evolved.
Speaker 1 (40:51):
Yeah, Excellent, and so I really appreciate, Tammy,
you being on the podcast today.
Excellent information.
Like I said, I've beenfollowing you and receiving your
emails and other informationfor a few years now.
How, if our listeners want toget more information about you
(41:14):
or get the book anything elsewhat's the best way to interact
with you?
Speaker 2 (41:19):
Well, first let me say thank you, bob, for having
me as a guesttammyanastasiacom.
That'sT-A-M-M-I-A-N-A-S-T-A-S-I-Acom,
and the book you can purchase onAmazon and again, it's
(41:40):
Essential Strategies for theDementia Caregiver Learning to
Pace Yourself.
Speaker 1 (41:46):
And I just want to highlight that it's
tammyAnastasiacom, but Tammy isnot the traditional spelling of
Tammy, it is T-A-M-I, so just Iwanted to I know you said it, I
just wanted to highlight it foranybody that was listening Get
more information about all thegreat work that you do.
So thank you so much for beingwith us today and if you've
(42:08):
enjoyed this podcast, don'tforget to subscribe for being
with us today and if you'veenjoyed this podcast, don't
forget to subscribe.
You can subscribe at any of theplaces where he listens to
podcasts or you can go to ourwebsite at ManorLawGroupcom.
Thank you, tammy.
Speaker 2 (42:20):
Thank you, bob, and thank you for everything you do.
Speaker 1 (42:35):
Thanks for listening.
To learn more, visitmanorlawgroupcom.
You're listening to Advice from your Advocates, a
show where we provide elder lawadvice to professionals who work
with the elderly and theirfamilies.
Welcome back to Advice fromyour Advocates.
I'm Bob Manor.
I'm a nationally boardcertified elder law attorney in
Michigan and we have what wecall a dementia-focused practice
, and so I'm really excitedtoday that we have Tammy
(00:23):
Anastasia as our guest.
She also has a dementia-focusedpractice in counseling, so I'm
really excited today that wehave Tammy Anastasia as our
guest.
She also has a dementia-focusedpractice in counseling, and
I've been following Tammy for along time.
She has some really greatinformation.
Welcome, tammy.
Speaker 2 (00:35):
Well, thank you, Bob, for having me.
It's a pleasure to be here.
Speaker 1 (00:38):
So I appreciate you and all of the work that you do.
Can you tell our audience alittle bit more about you and
what your background is?
Speaker 2 (00:46):
Sure.
So I have a master's incounseling and I started a
private practice in 1991 andfocused a lot on wellness and
over the years dementia and Ihad.
My grandmother got diagnosedwhen I was in high school,
college and back in the day theycalled it senility.
(01:07):
We didn't even know what it wasright.
And now fast forward 20, 30years later and I saw my father
go through so much sadness andmy grandmother was the most
loving, kind person and it justchanged her.
We didn't even know who she wasby the time she passed away.
So by coincidence there was agal in the area who wanted to
(01:31):
retire and with my skill set shesaid would you like to take
over my support group?
And then I just changed mypractice.
The focus all dementia relatedsupporting caregivers, family
caregivers, all dementia-relatedsupporting caregivers, family
caregivers, the primarycaregiver and I provide dementia
guidance, emotional support,care strategies and counseling.
(01:52):
And I will also work withpeople who've been early
diagnosed with dementia, who arein the early stages, to talk
about what it's like to havethis diagnosis.
And then I facilitate severalcaregiver support groups in the
Bay Area.
I'm out here in California andthen also do a lot of different
(02:12):
speaking events, educationalevents on the different topics
related to dementia andcaregiving.
Speaker 1 (02:19):
And so it's great that you have those speaking
events and that's kind of how Iheard about you or learned about
you a couple of years ago now.
But you're able potentially todo trainings, even virtually
right, or to even do supportgroups and things like that.
Virtually you don't have to begeographically within your area,
(02:41):
correct?
Speaker 2 (02:41):
Right, you know COVID was hard.
Lots and lots and lots of notso good things about COVID.
But the one blessing for me wasthat now I can service, I can
counsel people in any statebecause of the virtual as well,
as I do hold a couple of supportgroups myself.
Through my own practice I dothem virtually as well, so that
(03:03):
again I can have people fromdifferent states.
So it's the next best thing.
I used to do in-person andphone sessions.
Now it's in-person, it's virtualand also phone sessions, but I
like the virtual because I canstill see that name, that face,
and you can see, read the bodylanguage and just a different
(03:24):
connection.
But I think it's equally aspowerful as if I was meeting
them in person.
Speaker 1 (03:31):
Okay, that's so, you know.
It's interesting, as you weretalking about working with the
families.
I think it's so difficult forfamilies when they've got a
diagnosis of dementia because ifthey don't have that context,
if they haven't worked in, youknow, the healthcare field or
(03:51):
even some folks in thehealthcare field, it's just so
difficult to take this personthat you you know, might be your
parent, might be your spouse,and you have these expectations.
You have all of this historyand then have this change, which
is fairly dramatic at times.
How do you advise families onthis?
(04:12):
How do you help them kind ofwrap their head around how to
interact with their loved oneand how to deal with their own
grief, as well as many otheremotions, I imagine?
Speaker 2 (04:30):
Correct.
There's a wealth of emotionsand they fluctuate and a lot of
the fluctuation is very muchaccording to how the person is
progressing and the behavioraland the cognitive changes.
So typically a phone call willbe my loved one has dementia and
I don't know how to deal withthis, or I don't know how to
deal with that, or I don't knowwhat to do with my anger.
I don't know what to do withthe grief and loss.
(04:52):
So it really fluctuatesaccording to what the needs are,
and I'm pretty much whateverthe need is.
My goal when I work withsomebody, whether I meet with
them once or 30 times, it's tocan I educate them, can can they
learn, get more insights, moreunderstanding, and then always
try to equip them withstrategies on how to deal with
(05:14):
the cognitive and the behavioralchanges, taking into account
who the person was pre-dementiathe relationship pre-dementia
and now the relationship theperson with dementia and the
relationship with the personwith dementia.
Speaker 1 (05:31):
So you know, I think that's a really important point
that you just made is therelationship before, because a
lot of times I've been workingwith families that have a loved
one with dementia for 15 yearsor longer and the idea here is
that a lot of times there isthat emotional for lack of a
better term baggage.
(05:52):
In other words, it could be aparent that maybe you had a
difficult relationship with,sometimes husband and wife.
There's always going to be somechallenges in any kind of
marriage and so often I hearfamily that describe what's
happening and then they'll say,oh, he's just being stubborn, oh
, that's my mom just beingstubborn.
(06:13):
How do you help families kindof break through that to say,
okay, this is different thanjust being stubborn, this is
different than their you know,ability to rationalize and make
good decisions?
Because in my experience a lotof families really struggle with
that and really have adifficult time moving beyond the
(06:34):
history, all the things thatled up to you know, whatever
state that we're in, if it was80 years of history of you know
since they were born and all ofthat, how do you help families
kind of move to the point wherethis is not the same
relationship as it was before?
Speaker 2 (06:52):
Yeah, that's a great question and that's the bulk of
my work is really educating them.
When we get a diagnosis ofdementia, you really have to
educate people what dementiadoes to the brain.
And we have that.
Let's go back to therelationship pre-dementia.
I can't tell you how many timespeople say my husband just
(07:14):
won't cooperate or they refuse,and I have to remind them they
may not be able to process theinformation, they may not
remember the information.
It's not that they're refusingintentionally.
So we have to separate what wasand you have these feelings and
emotions from what was that cancarry over into dementia.
(07:34):
And, quite frankly, what I dotry to do is sometimes I try to
use the dementia to heal thepast and now deal with the
present.
So a lot of it is reallyeducating them, getting them to
understand that if they'reargumentative, if they're
accusatory, if they're combative, it's now because they have a
(07:55):
brain disease or brain damage.
Their brain doesn't have thatcapacity to pre, preplan and
figure out ways to manipulate.
They're not intentionally tryingto upset you and it's really
understanding how dementia isattacking and affecting the
(08:16):
brain.
And these are behaviors nowbecause of dementia, even though
it may appear.
But they're two different, verydifferent.
And when families, especiallythe caregiver, family, primary
caregiver, sees that, it allowsthem to detach and not take
personally what's being said anddone and they learn to react
(08:40):
differently, they learn torespond dementia friendly versus
reactive and anger.
Anger will still always bethere because there's a lot of
emotions associated withdementia, but it won't be as
intense and won't be as frequent.
But that education piece iswhat brings us over to the other
(09:02):
side of now, relating to myloved one as a person with
dementia.
Rather than assuming they haveall this pre-planning,
premeditated uh stuff going onand you, you have to make that
distinction, otherwise it willbring you so down and you will
continue to engage and it willignite and cause a lot of
(09:26):
friction between you and yourloved one that you're taking
care of.
Speaker 1 (09:31):
You know, there's a couple of things there that I
really want to highlight thatyou just said, and one of them
is, you know, dealing with inthe long-term care industry.
They often would call itbehaviors.
So it could be, you know.
Sometimes they call itsundowners, sometimes it's just
aggressiveness, maybe wandering.
You know, certain behaviors andwhat we found is that there are
(09:53):
things that can be done to sortof lessen those behaviors.
And I'm not talking about drugs.
Obviously there's drugs andthat's what the medical field
tends to want to look at.
But there's other things.
I'm guessing that you couldgive advice to families on how
to minimize those negativebehaviors.
Speaker 2 (10:11):
Right, right.
So what I try to do is get.
All behaviors are a form ofcommunication.
Whether we like it or not, it'sall a way of communicating a
need and we have triggers.
For as unpredictable asdementia can be, there can be
what we call triggers, causes orpatterns.
(10:31):
So I'm going to help familiessee if we can figure those
things out.
It's things such as a word Iused, a facial expression or
pain or an unmet need, and if wecan identify what some of those
patterns are, then we canpreemptively either plan for it
(10:57):
or possibly prepare or get ridof the trigger altogether, which
will now not trigger thatbehavior.
So it does take a lot ofobserving and caregivers my
family caregivers and my privatepractice they're so observant
they don't know what to do withthat information.
So how can we use thatinformation to educate them and
I always say, to outsmart thedementia?
How can we take thatinformation to outsmart the
(11:21):
dementia?
Either by pre-planning andprepare for repetitive questions
the same question over and overprepare and or circumvent the
behavior by understanding whatthe pattern or the cause might
be and prevent it from happening.
So let me give you an example.
There was a gentleman fatherjust loved having his son come
(11:42):
over.
But every now and then thefather would just kind of lose
it like get out of my house, youdon't belong here.
So for about six weeks I justsaid, you know, let's just
monitor and write down and seeif we can find a pattern.
Well, it turned out, every timehis son wore red we got an
adverse reaction.
Well, he was in the military.
So you can start to put thepieces together.
(12:03):
He never wore red again over tothe house and, believe it or
not, those triggers.
Now we don't have the sonwalking into a volatile
situation because we couldidentify one of the triggers.
Speaker 1 (12:17):
That's amazing and that's kind of the point of the
work that you do, which is thatwe really have to kind of take
time and listen and really diginto the circumstances, because
who would have in some kind ofcare setting?
They are very busy and theyprobably don't have the time to
(12:44):
just sit down and talk to thefamily and really dig into these
things to figure out what thosetriggers are.
I have a story that some of mylisteners I'm sure heard me tell
this story before.
But we had a gentleman with theLewy body dementia where we
were representing the family,and with Lewy body, as you know,
there's often somehallucinations, maybe some
(13:09):
aggressiveness, things like thatand so he had gotten to the
point where he needed careoutside of his home.
It wasn't safe for him to behome with his wife anymore.
It could have been dangerousfor her he was a large man and
if he got aggressive it couldhave been dangerous her, he was
a large man and and if he gotaggressive it could have been
dangerous.
And so but now we still have toprotect the caregivers, right?
Just because we're in a caresetting doesn't mean that we
(13:30):
can't and we don't want to.
We didn't want him to bedrugged so that he was sleeping
all the time.
We wanted to have him have thebest quality of life possible.
What the what the medical staffand the caregivers couldn't do
is something that my staff wasable to do, which was to sit
down, talk to the family, getmore information, kind of like
(13:51):
you did with the discoveringthat it was the red shirt that
caused the trigger.
And what we found out was thathe really loved old Western
movies and whenever he had thesebehaviors, if we popped in an
old VCR of an old Western movie,he immediately sat down, calmed
down, and that would deal withthat.
So we were able to educate thestaff, the caregivers hey, if
(14:14):
there's ever a problem, there'sa stack of tapes over here.
We got this old VCR, pop it inand, and you know, direct him
over to it.
And it worked like a charm.
And, yeah, he, he lived anotherseveral years after that and we
never had any issue with him.
You know being aggressivetowards others because they we
(14:34):
were able to learn what you knowwhat was something that would
calm them down, and that'ssomething that I don't fault the
medical staff for, because they, frankly, don't have enough
time to do that kind ofinvestigation, like you are able
to do with families.
Speaker 2 (14:49):
Yeah, and I go for a deep dive.
I have a counseling background,so I know the questions to ask,
I know the patterns to look for.
I don't ever assume I know theanswers.
I just go searching for all theinformation as much as possible
to see if I can help put thepieces together, because
ultimately that's what we'redealing with.
(15:10):
You have this person that has apast and you know, as dementia
progresses they may relive theseold memories.
So I'll go looking for what dowe know about their past, their
personality?
So I'll go looking for what dowe know about their past, their
personality.
But the flip side is equally asimportant.
What are the things that bringthem joy, what are the things
that make them smile, what arethe things that make them happy?
And before we place someoneinto a care community, what I
(15:35):
like to do is prepare myfamilies as much as possible.
This is the information we'regoing to want to give the care
community.
These are the things to beaware of.
These are the things and weplot it out, I mean, to the very
detail.
This is the story we came upwith what we're going to tell
them, when we tell them, whenwe're going to move them.
I mean, it's so fine tuned, atleast in my practice, because of
(15:58):
the very things you just shared, and that is any transition is
a difficult transition.
Any move is a transition, but wehave two people involved.
It's also equally heartbreakingfor the family to have to move
their loved one into a carecommunity.
So you're dealing with yourloss and you're dealing with the
sadness.
(16:18):
It may be the first time you'veever lived alone and now I've
also got to support my loved one.
So the more information we cangive the care community, the
more prepared we are, the moreknowledgeable we are everybody
involved, the better and theeasier the transition will be.
No two transitions are ever thesame and we also prepare for
(16:42):
the transition not going well,so that the families have a
realistic expectation of how dowe manage this now if it goes
sideways a little bit.
But we have to provide the carecommunities also with that
valuable information that youjust shared to make this as well
(17:03):
, make it as good as it possiblycan be.
Speaker 1 (17:08):
You know, it occurs to me this is interesting that
your job and my job isn't thatdissimilar, because that is our
goal is to try to make sure thatwe get in front of the problems
.
We can listen and deep dive, toget you know, to discover, and
one of the things that we findand I know that I suspect that
you often need to have theseconversations with the family,
(17:31):
just like I do which is thefamily often, especially if it's
the children.
Sometimes it's the spouse, butparticularly if it's the
children that are the ones thatneed to step up and start making
some decisions, because theparent maybe isn't capable of
that anymore, and so that'sdifficult, that's really
difficult to treat your parentin such a way that they're not
(17:57):
you know, you're not deferentialto your parent.
That's kind of how most of uswere raised is we're deferential
to our parents, and so thereality is I see this nearly
every day of meeting with thefamily and they say well, I keep
trying to convince my dad, toconvince them you might, on any
(18:19):
given day, be able to have thatconversation, but if their
memory is such where they don'tremember what they had for
breakfast and they don'tnecessarily even remember who
you are.
Sometimes it does not do anygood to try to convince or use
logic or reasoning, because theymay not actually fully be able
to reason anymore.
But even if they can, if theyhave that time of lucidity, they
(18:42):
will likely forget it.
And so this is very frustratingfor families because they say,
okay, I met with a familyearlier today and the
conversation was okay mom anddad who both have dementia.
In this particular case, youknow, you really can't live
alone anymore.
It's not safe for you to livealone.
We either need to bringsomebody into the house or we
need to go into a moreprotective setting.
And apparently they hadconvinced them it was all set.
(19:06):
And then, when the day came,dad said no and it was all over,
and they backed off.
And the problem with that isthe way they described where mom
and dad were at on their memoryissues.
There was no way that you'regoing to be able to get
consistency where we say oh, yes, I remember now we decided
we're going to move intoindependent living.
(19:27):
That's not something that thefamilies often can easily wrap
their head around of.
This isn't necessarily,unfortunately, about convincing
someone, because even if you canconvince them, it may change a
week from now, or two weeks fromnow, or tomorrow or in 30
minutes.
Speaker 2 (19:46):
And that is a huge problem.
And so you know, we've all been, we've all, most of us have
been raised to respect yourelders, to respect your parents,
and you've got two differentdynamics.
You have spouse dynamics andthen you have adult children and
parent dynamics.
And the adult children wereference them as being the
sandwich generation.
(20:07):
But, what happens is you'reexactly right.
We can have a lucidconversation, they agree, and
then the families hold on tothat and the problem is it's for
that split second.
And so we have to be again,outsmart the dementia.
We have to present it in a waywhere we don't use reason and
(20:27):
logic, but that we find a way tocommunicate with them that
appeals to them, to make themfeel they're part of the
decision.
But yet we're navigating itbehind the scenes.
But I see this all the time.
I just did a speaking event theother day yesterday and the
woman said oh my God, myhusband's so mad at me.
(20:48):
I said well, what happened?
And she said well, is itpossible?
So they were cleaning the house.
She took a lot of his things.
He said no problem, they can goto the Goodwill.
Well, she got home, you stolemy things, you gave them away,
and he's been upset ever since.
And she says but we had thisconversation.
I go, it was fleeting.
(21:09):
So I teach families okay, wedon't clean anything in front of
them, even if they agree, wedon't remove anything.
So when it comes to the legalstuff, we have to be strategic
in how we can't convince them,but what we can do is make them
feel a part of a plan that isbeneficial for everybody.
(21:32):
For example, scamming is a bigproblem.
Speaker 1 (21:35):
Absolutely.
Speaker 2 (21:36):
A lot of older.
My parents, your parents, wedon't want our money being taken
by anybody older.
My parents, your parents, wedon't want our money being taken
by anybody.
So we might say you know whatto protect our finances better
or if anything should happen andmake sure no stranger gets
somehow we have to find ways toappeal to their sense of and
(21:56):
then participate in it.
But if we bank on themremembering and being supportive
, oh my gosh, then there's somuch conflict.
And then it's that controlissue and it's figuring out how
to present what needs to be donevery cleverly.
We have to be very clever andvery strategic.
Speaker 1 (22:18):
So in my practice that's something that we're
always dealing with, because Iwant someone in the family to
ask as many tough questions tome as they can.
I want somebody to do their duediligence and ask very
difficult, tough questions andreally go through every scenario
to make sure that theyunderstand.
But mom and dad maybe, if well,you know, if there's one of the
(22:43):
parents with dementia, they'reprobably not capable of going
through that level of detailbecause I have a lot of
information to convey.
One of the things that lawyerstraditionally do is we only meet
with the client.
We don't meet with anybodywho's not the client.
Well, I try to look at it as myclient is the elder.
My client is the possiblylikely frequently the person
(23:05):
with dementia.
That's who my loyalty goes to.
Well, I also know if I gothrough all the details I need
to go through with them, they'regoing to get overwhelmed.
Speaker 2 (23:14):
They're going to get scared.
Speaker 1 (23:15):
They're going to be, frightened, and so I want to
have the family understand andask all the tough questions.
But when I'm talking to theperson with dementia, we
typically narrow it down tothings like would we rather keep
decision making in the family?
Do we want to keep thegovernment and the courts out of
family matters?
So keep family matters in thefamily, and that is typically
(23:38):
something that most folks canunderstand.
Or if they were a veteran andsometimes we're dealing with
veterans benefits, things likethat to say, well, you, you know
, you served our country, youearned this.
We want to make sure that thosebenefits that you earned way,
that you get the benefits you'reentitled to because of the
service you provided to ourcountry.
(24:03):
But you know a lot of the sortof working around it to say,
okay, they need to understandsome concept of it, but not as
much detail as hopefully thekids would want to know.
Speaker 2 (24:14):
Yep, and you bring up a great point.
Sometimes I will encourage thefamilies to bring in an
authority figure, let's say theattorney.
Like yourself, you know thereare still older.
Our older generation still hasa respect for authority.
Maybe it's a medical doctor,maybe it's an attorney like
yourself, maybe it's a financialplanner, but sometimes that is
(24:35):
what we do because they'lllisten to you and and they know
you have their best interest atheart.
So there's many differentstrategic ways to do it, but
you're absolutely right.
You know we can't go into thefine, fine, fine detail
depending on how advanced thedementia is.
Right, so it's, you're doing abeautiful job.
(24:57):
I mean, it's just, I lovehearing these stories because
we're helping the families,we're assisting the families to
get things done that need to bedone, that protect everybody
involved, whereas, you know,when we're dealing with families
and people living with dementia, they don't know what.
They don't know because of theimpaired brain.
(25:17):
So when I hear you talk, Ithink, oh my gosh, it's
beautiful what you're doing,because that is how we can get
things done.
We have to scale back thedetail for people living with
dementia because the more wetalk, like I tell people, the
less we say the better things,and then who knows where their
(25:42):
mind's going to take it, theymisperceive it, they start
distrusting you.
So it's beautiful to hear howyou're handling that, because
it's spot on right the less wesay, the better.
Speaker 1 (25:50):
And one of the things that I always uh offer uh to
the family is to say so, let'ssay we're dealing with something
like, um, driving or taking,you know, making sure that
someone's not driving.
I always say okay, don't be thebad guy, son or daughter, you
don't need to be the bad guy.
Make me the bad guy, make thedoctor the bad guy.
We usually make the doctor butsome other professional, and
(26:12):
when it comes up we say, oh,it's not me, it's the doctor
said you can't drive, it's thelawyer says you can't drive
because of the liability, youknow the liability associated
with it or you know whatever itis.
But I have no problem if I needto be.
You know every case is going tobe a little bit different,
every family dynamics is goingto be a bit different, but I
often want to give a rationaleto the family so that they don't
(26:33):
have to be the one that tookthe car keys away.
Maybe they physically did, butthe blame can go on some outside
or outside of the family.
Speaker 2 (26:41):
That's exactly right, that's exactly right.
That's exactly right.
And I'm also the person toblame.
Put it on me right, Because thecaregiver is already getting
dumped on enough.
The caregiver is to blame foreverything that's wrong in their
life and, you know, thecaregiver is doing the best they
can to support them, to providethe best care, the best love,
and then their loved ones justgrilling them and I think, oh my
(27:05):
God, with driving and someother decisions that have to be
made, we don't want you to bethe bad guy.
And that's exactly.
We deflect it right.
So, then the caregiver couldjust normalize and validate.
I'm so sorry this happened toyou, but they aren't the bad guy
.
Let the DMV be the bad guy, yoube the bad guy, me be the bad
guy, but I really want toprotect family caregivers.
(27:27):
They deal with so muchdynamically.
What can we circumvent andfigure out another way to deal
with it so that they don't quoteunquote, become the bad guy for
every situation and theystruggle with caregiver guilt as
it is?
So, why not deflect it and let'slet somebody else be the bad
(27:48):
guy and take this off your plate, because we're going to have to
pick up the pieces anyway?
But I don't want the the personliving with dementia to blame.
They'll blame them anyway.
But how much better me as thecaregiver, knowing.
Oh, somebody else dealt withthis and it's not me.
I just have to pick up the.
Speaker 1 (28:06):
I want to ask you more about that family dynamic
in a second, but I want to saythat I really enjoyed this book
that you wrote.
It's Dementia Caregiver,Learning to Pace Yourself, and
Pace has a specific meaning foryou.
But it was an excellent book.
I really enjoyed it.
Before we get into the book, Ihave one last topical question,
(28:27):
which is what about thosefamilies Dealing with this as
difficult?
So the family dynamics wherethe family doesn't agree, so
that you know sometimes it's thecaregiver, the child, sometimes
it's the, you know the child,who's nearby, who's providing a
lot of support and help for theparent, and then the out of town
or out of state family.
(28:48):
How do you have any advice fordealing with that dynamic which
comes up so often, where therebecomes conflict within the
family?
I think often because there'snot an understanding or there's
a bit of denial about what momand dad need.
So any advice on that?
Speaker 2 (29:04):
I'm glad you brought that up.
So family dynamics I deal a lotwith and in my private practice
I primarily work with theprimary caregiver and what
everybody needs to sort of beaware of is family dynamics come
to the surface when dementia,somebody has a dementia or when
there's a crisis, andunfortunately, a lot of the
(29:28):
dynamics have been in placesince they were kids.
We have the one who's thebackseat driver, we have the one
that is uneducated but thinksthey know it all.
We have the one that's verygreedy, doesn't want to spend
the money because there'll bemore money for them when the
parent passes away.
So I'm going to be very honest.
I take care of my primarycaregiver and I say I get a lay
(29:51):
of the land of all the players.
We can invite them to join usin putting a plan together, but
we also put a plan in withoutthe players, because my family
caregiver, who's the primarycaregiver, doesn't have the
energy to try to convincesomebody in the family who's
(30:11):
always been this way.
We invite them.
If they're not going toparticipate, don't want to
participate, we kind of outsmartthem too, because dynamically
we need to take care of theperson who has dementia.
We have the dynamics in thefamily.
So I bring to the surface theseare the dynamics.
Have the dynamics in the family?
(30:33):
So I bring to the surface theseare the dynamics.
How are we going to?
What plan are we going to putforward?
So a lot of times it's changingthe expectations of the family
members, not so much trying toconvince them.
We're going to invite them, wewant them to be a part of it.
But, as typically happens, theyall have their own issues.
So we're going to put a plan inplace regardless and make sure
that everything is in place thatneeds to be in place.
(30:54):
And a common one is oh, Italked to dad, or I talked to
mom and she sounds great on thephone and I said, well, let's
move them there for a week andlet's have them experience it.
And then I hate to say it, thisis a horrible thing to say, but
greed is a big issue.
Yeah, and there are some familymembers who say, no, mom
(31:14):
doesn't need that, mom doesn'tneed this.
But truthfully, mom needs it.
You're not involved in the care, so we'll do what has to be
done to take care of them.
I always want my familycaregiver.
I how can I say this?
I always want them to be awareof the choices, but we may not
have them participate in thechoices because we can't get
(31:35):
done what needs to be done.
So we're going to find otherways to support the family
caregiver who's the primarycaregiver, as well as what needs
to be done in the best interestof the parent or the person
living with dementia.
Speaker 1 (31:49):
But oh, they come flooding to the surface the
dynamics, yeah, and I think youknow you're right, of course
that there are a certainpercentage of family members
that are coming in with thewrong motives.
In my experience, a good amountof time though it's the family
each has their own idea of whatis the right thing to do, and
(32:12):
they each have, you know,they're getting input.
I always say I call it thebarbershop advice.
I was in the barbershop one daya few years ago, and you know I
try not to interrupt otherpeople's conversations, but the
gentleman came in and he was,you know, talking to the barber,
which, at men's barber shops,that's something that people do
(32:33):
They'll just come in and chatwith the barbers.
So they were chatting and theysaid well, I don't know what
we're going to do.
My mom can't live alone anymore.
I'm not sure how we're going toafford all this.
And the barber said oh, I'lltell you what to do.
He said well, all you're goingto do is you're going to take
all the money out of her account, put it in your account.
And I had to interrupt him atthat point and I said no, really
(33:00):
, that's a really bad idea.
That's not going to work.
That's going to cause much moreproblems than the value that
you're going to get out of it.
And I usually don't try tointerrupt other people's
conversations, but I feel likethat's where a lot of the
confusion and sometimes conflictcomes from is it's a lack of
information, a lack of notknowing what the options are.
And, like you say, I thought itwas a great answer to say let's
try to get the family together,let's sit down, try to come up
(33:20):
with a plan together, try toinvolve everybody in the plan.
Of course, some people aregoing to be more involved in the
plan than others, but at leastthat's a possibility.
Sometimes it's just a matter ofeverybody's getting somebody in
their ear.
Everybody's getting differentinformation.
People watched a movie, a TomHanks movie or something, and
they have it in their head thatthis is what reality is.
And if we just get everybodyaround a table that's my
(33:45):
favorite thing to do in thesetypes of situations and then
we'll see if somebody's beinggreedy, I mean, it'll come out
if what the real motive is beinggreedy or some other bad motive
.
But sometimes it's simply thatthey just got.
You know, there's so much badinformation when it comes to
this type of planning.
Speaker 2 (34:01):
Well, and you have denial and and for people who
are in denial, it is bliss forthose people who are not in
denial.
So there's just so manydynamics, you know, and in my
case, in my private practice,the one who's usually the
responsible child is the one whoends up burdening and taking
all of the responsibility, andthe family's used to that person
(34:24):
stepping up.
And now mom or dad has dementia, right, and then you also have
the parents.
You know, our dad has dementia,right.
And then you also have theparents.
You know, what did they leaveto whom?
And there's just so manydynamics.
My first goal is always let'ssee if your siblings want to
participate.
We can invite them, we have togive them, we have to hear of
(34:46):
their voice, we have to hearwhat their thoughts are.
But we also have to keep inmind that everybody is going to
perceive it differently andeither they join us or they
don't.
That's a choice they're goingto make, but we still have to
put in place what needs to beput in place.
But for the family caregiverI'm going to speak on their
(35:07):
behalf it is really difficultand very upsetting when I'm the
one taking care of mom and dadand then they live miles away or
they don't come and visit andthey downplay everything.
It dismisses what the primarycaregiver is going through, and
we have to acknowledge what theprimary caregiver is going
(35:29):
through.
We have to.
They're the ones that are inthe trenches, they're the ones
that are doing this, and so I amgoing to do what's in the best
interest of the family caregiver, if it means we need to
communicate this to everybody,but let's not have expectations
and depend on these people whoare not dependable on these
(35:49):
people who are not dependable.
Speaker 1 (35:50):
I think that's 100% right, and that's the thing is.
I think most people have noidea how difficult it is.
We often have.
You know, we always preferpeople that are planning ahead
or planning in a non-crisissituation, but a good portion of
the people that come see usit's a crisis, and so they've
been to the hospital, maybethey've been to rehab for a few
weeks and now the thought isokay, what are we going to do
(36:13):
now?
And often the families say ohwell, we're just going to take
turns and we're going to bringmom home and we're going to take
turns.
Speaker 2 (36:20):
And.
Speaker 1 (36:20):
I say, okay, I can see that working, because your
sister's flown in fromCalifornia and you're going to
take some days off of work andthings like that.
I can see that working for aweek.
Maybe I can see it working fortwo weeks.
It is, first of all, I thinkuntil you do it, you're going to
be shocked at how difficult itis.
And number two is that'sprobably not sustainable for six
(36:42):
months, six years, 10 years,you know, whatever it turns out
to be, and so it's somethingthat it's really difficult,
because people in crisis oftenare just trying to say, well,
how do we get through the nextfive days?
And really that's the time tostart thinking about.
Okay, we can't just think aboutfive days.
We got to think about theforeseeable future here.
Speaker 2 (37:04):
Yeah, yeah, exactly.
And let me go on the other sideof the coin.
And there are some families.
It's beautiful to watch, it'sbeautiful they all come together
.
I don't want to insinuate everyfamily, but there are
underlying dynamics that come tothe surface and we have to play
with those dynamics and againfigure out how we're going to
(37:26):
navigate this, given who theplayers are in the family and I
have this phrase right we havefantasy family and we have
reality family.
And so we've got to sort outfantasy family from reality
family, because we're going tohave to deal with reality family
.
But we can invite.
We can invite.
But whether they participate ornot is going to be a choice on
(37:49):
the other players Right.
But whether they participate ornot is going to be a choice on
the other players, right.
But when it is magical, when Iwork with a family and it works
out great, it just it makes myheart sing, right.
But I also know that the normis we have a lot of different
people and family dynamics thatcome to the surface.
How do we juggle it?
(38:10):
And that's what we're reallytrying to do On top of now
trying to navigate caring for aloved one with dementia, which
is so time intensive anyway, andthen I've got to try to figure
this out with the siblings onthe side.
So it's a lot, it's veryoverwhelming and it's a lot for
the caregiver to deal with.
(38:30):
But I'll do whatever it takesto help support the caregiver
and create what we need tocreate.
That's in the best interest ofthe person living with dementia,
and I'm going to say mycaregiver, because they're in
the trenches.
Speaker 1 (38:45):
Let's talk a little bit more about your book.
It's an excellent bookEssential Strategies for the
Dementia Caregiver Learning toPACE Yourself and I believe you
probably came up with thatacronym for PACE why don't you
tell us a little bit more aboutthe book and what you mean by
that?
Speaker 2 (39:01):
Right.
So prior to COVID I had put amanuscript together and I just
started writing down all thethings that reoccur, that I hear
in my private practice, that Ihear in my support groups that
I'm asked when I do speakingevents.
So I had this manuscript forabout two, three years, but I
never had time to finish it.
Well, covid hit, so I thoughtnow's the time to get the book
(39:24):
published.
So the book is really trulybased on what I hear in my
private practice constantly,again the support groups, and
there's certain things that keptcoming up.
And one thing that's keptcoming up is my loved one gets a
diagnosis of dementia.
We leave the office and nowwhat do we do?
And I thought, wow, let meeducate people on the behavioral
(39:48):
changes, the cognitive changes,the relationship changes, the
cognitive changes, therelationship changes.
So I walk people through thebeginning all the way to the end
of life journey on how to dealwith, what to expect about
what's going to happen to yourloved one, what's going to
happen to the relationship, andit's chock full of strategies.
The PACE acronym came upbecause we don't know how long
(40:11):
this journey is going to take.
And they come out of the gateand they're depleted, you know,
they don't know how to deal withrepetitive questions, how do I
deal with the accusations andhow do I deal with the
uncooperativeness?
And I thought, oh my God, somany of my families that I work
with are so exhausted alreadyand I think this may be a five,
(40:33):
six, seven year journey.
So the concept PACE is how tosurvive this journey without it
being at the expense of yourphysical, mental and emotional
well-being, and that's how PACEevolved.
And that's how PACE evolved.
Speaker 1 (40:51):
Yeah, Excellent, and so I really appreciate, Tammy,
you being on the podcast today.
Excellent information.
Like I said, I've beenfollowing you and receiving your
emails and other informationfor a few years now.
How, if our listeners want toget more information about you
(41:14):
or get the book anything elsewhat's the best way to interact
with you?
Speaker 2 (41:19):
Well, first let me say thank you, bob, for having
me as a guesttammyanastasiacom.
That'sT-A-M-M-I-A-N-A-S-T-A-S-I-Acom,
and the book you can purchase onAmazon and again, it's
(41:40):
Essential Strategies for theDementia Caregiver Learning to
Pace Yourself.
Speaker 1 (41:46):
And I just want to highlight that it's
tammyAnastasiacom, but Tammy isnot the traditional spelling of
Tammy, it is T-A-M-I, so just Iwanted to I know you said it, I
just wanted to highlight it foranybody that was listening Get
more information about all thegreat work that you do.
So thank you so much for beingwith us today and if you've
(42:08):
enjoyed this podcast, don'tforget to subscribe for being
with us today and if you'veenjoyed this podcast, don't
forget to subscribe.
You can subscribe at any of theplaces where he listens to
podcasts or you can go to ourwebsite at ManorLawGroupcom.
Thank you, tammy.
Speaker 2 (42:20):
Thank you, bob, and thank you for everything you do.
Speaker 1 (42:35):
Thanks for listening.
To learn more, visitmanorlawgroupcom.
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I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com