August 15, 2024 • 29 mins
What happens when a licensed mental health counselor finds herself on the other side of care, grappling with her mother's Alzheimer's diagnosis? Join us as we welcome Ms. Bobbi Barber, who shares her compelling journey from the first signs of her mother's cognitive decline to the invaluable support she found in the Alzheimer's and Dementia Resource Center.
Together with Bobbi, we uncover the transformative power of behavior analysis principles in dementia care. Learn how small environmental adjustments, like color-coded cups and medication compliance tools, can lead to significant improvements in caregiving. We also discuss the profound impact of creating predictable and comforting environments to uphold dignity and independence for those with memory challenges. This episode offers a heartfelt blend of personal anecdotes and professional insights, providing listeners with practical tools and strategies to enhance the quality of life for both the person living with dementia and their care partners.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Robin Rountree (00:04):
Welcome to Informed Aging, a podcast about
health help and hard decisionsfor older adults.
I'm Robin Roundtree, a formerfamily caregiver.
I've worked in the home careindustry and now work for the
Alzheimer's and DementiaResource Center.
Edith Gendron (00:19):
Hi, thank you for joining us today.
I'm Edith Gendron Robin'sco-host.
I'm the executive director hereat Alzheimer's and Dementia
Resource Center.
I have 40 years of working withadults, primarily seniors and
elders in need.
I'm a certified positiveapproach to care trainer and
consultant, and ADRC is adesignated positive approach to
care agency.
(00:39):
Also, I'm a certified trainerfor savvy caregiver.
Robin Rountree (00:43):
The thoughts and opinions expressed belong to
Edith and I, not our wonderfulemployers and sponsors.
This podcast is a service ofthe Alzheimer's and Dementia
Resource Center.
We are not affiliated with theAlzheimer's Association.
Before making any significantchanges in your life or your
person's life, please consultyour own experts.
Edith Gendron (01:04):
Today we're going to be talking with Ms Bobbi
Barber.
She is a licensed mental healthcounselor, a behavioral analyst
and a clinical behavior analyst.
That's a mouthful, we'll beright back.
Robin Rountree (01:16):
Senior Helpers is the only home care agency
offering a revolutionary new wayto approach senior care the
Life Profile Assessment.
This data-based app is acrucial tool in helping seniors
age safely and successfully athome.
Combined with our provenin-home care programs and
(01:36):
trained caregivers, seniorHelpers Life Profile is leading
the way to better outcomes forour clients.
For more information, log on toseniorhelperscom.
Slash Orlando.
For over 37 years, theAlzheimer's and Dementia
Resource Center, adrc, hasserved as a Central
(01:57):
Florida-based grassroots,nonprofit and community resource
center.
They are dedicated to providingsupport and hope for families
and individuals caring forsomeone they love who is living
with Alzheimer's disease orother dementia-related illnesses
.
Adrc empowers caregivers withthe knowledge, support, skills
and strategies they need to helpthem confidently prepare for
(02:18):
the challenges that lie ahead.
To learn more, visit thewebsite adrccaresorg.
To learn more, visit thewebsite adrccaresorg.
We are back with Bobbi Barber,and can we just briefly go
through all the letters?
After your name?
We've got MS Master of ScienceNice.
Bobbi Barber (02:35):
LMHC Licensed Mental Health Counselor, bcba
Board Certified Behavior Analystand CTP Certified Trauma
Professional.
Wow, there you go.
Edith Gendron (02:45):
Sheified Trauma Professional.
Wow, there you go, she's thealphabet woman.
Bobbi Barber (02:47):
I know I spent a lot of time acquiring those.
Edith Gendron (02:51):
I bet you did A lot of work, a lot of work.
Robin Rountree (02:53):
We're going to talk about behavior and how to
modify it, but first can youtalk to us about how you came to
learn about Alzheimer's andDementia Resource Center Sure?
Bobbi Barber (03:04):
One of the women that are in my office.
She's another mental healthcounselor.
We were just talking about ourparents.
Both of our moms have had somemental health issues and then,
of course, at the beginningstages of trying to figure out
what is the diagnosis, and sherecommended that here's the
resource, because I was like, ohmy gosh, it is so overwhelming,
and you and I had aconversation, I called to find
(03:25):
out, and then it was just here.
You spent so much time with me,it was so gracious and lovely,
and then I just started to howcan I take this resource and
help my mom?
And so that became thebeginning of the arduous process
of, you know, getting herdiagnosed, getting some
information and then putting itall together in a way that was
(03:46):
beneficial to her life.
Robin Rountree (03:48):
Wow, so how long did you help care for your mom?
Bobbi Barber (03:52):
My mom.
Well, that's the tricky thing,and I was thinking about that
today.
She had symptoms and signs waybefore I knew what it was.
Edith Gendron (04:02):
Right, not unusual Not unusual.
Bobbi Barber (04:04):
We spent many years helping and caring in ways
that we were just like graspingat straws, didn't really know
what this was.
There was a lot of masking, alot of oh well, it's this, oh no
, it's this, and you know she'sfunctional.
But then it came to a pointwhere she was no longer capable
of working outside of the house,and then when she stayed at
(04:27):
home and then just starteddeclining, then it was all.
The other elements were removedand so we had a clearer picture
.
So that was probably threeyears, and then the last year
2023, was probably the fastestdecline.
That's when I reached out to you.
Was probably the fastestdecline.
That's when I reached out toyou.
Edith Gendron (04:43):
How old was your mom when you first started
thinking?
Bobbi Barber (04:53):
When my daughter was born, she had open heart
surgery and she ended up havinga pacemaker put in and coming
out of anesthesia she had asmall stroke and then it seemed
that that wasn't the issue.
Probably six months into herrecovery she started to talk
about her neighbors and so shehad neighbors and the story
became elaborate and moreelaborate over the years and at
(05:16):
first you were like maybe theneighbors are a problem.
I don't know, them.
So you just took a lot of thingsthat she said.
So it was about 10 years.
She spent five years reallydiscussing the problem that she
had had with her neighbors andthen we started to be like, okay
, well, that's, I don't thinkthat that's what's really
happening.
But how do you prove it?
Because she lived alone and shewas working.
So the second uh half, so itwas probably about an 11 year
(05:41):
journey total so the first fivewere just very dismissed.
The last, the second five, thefirst three were like.
The last two was like this isit?
This is what dementia lookslike?
This is alzheimer's.
Edith Gendron (05:55):
This is cognitive decline we know now, of course,
through research and other goodevidence, that changes in the
brain can occur up to 20 yearsahead of time.
I know so before we reallyrecognize symptoms.
And yeah, you know, we had thesame thing in our family.
We had someone who had a reallystressful job, and so we all
wrote it off for years.
Bobbi Barber (06:16):
You can discount a lot.
Edith Gendron (06:18):
You can.
Bobbi Barber (06:18):
You can convince yourself oh, it's not that, or
it's this.
It masks so well.
Edith Gendron (06:23):
It does.
Robin Rountree (06:24):
It really does.
You had called me a littlewhile ago and said I want to
talk about how I used appliedbehavior analysis as a caregiver
, and I said wow, those are somebig words you are throwing at
me.
So give me a little definitionof what you mean by applied
behavior analysis.
Bobbi Barber (06:41):
Okay, ABA or applied behavior analysis.
It's a science and it's how westudy the interaction between
environments and behaviors.
So it's almost this externalview when we can't access the
interstate how do you feel, howdo you think?
And it's applied to workingwith traditionally with
developmental or intellectualdisabilities and animals.
(07:03):
You may hear it at SeaWorld alot.
We use positive reinforcementand pairing and it's because
it's the interaction between thethings that you can measure and
observe all the things in theenvironment that has helped me,
my history with that, helping mymom, because a lot of the times
she didn't know how she felt.
She didn't know and herthinking was so erratic or
(07:24):
unexplainable she didn't havethe words for it.
So we can look at theenvironment and that's what ABA
is is how can we makeenvironmental modifications to
improve behaviors?
And then we isolate behaviorsfor increased and or decreased,
and it totally applies to caringfor dementia, alzheimer's,
seniors and any kind ofcognitive delay.
Edith Gendron (07:44):
That's a positive approach to care.
Yeah, it is we look at what wecan control, and that's the
environment.
Exactly, and the environment ismore than the trees and the
flowers.
Bobbi Barber (07:51):
It's all the stimuli that are present right.
So myself, I'm a behavioranalyst.
My sister-in-law, who livedclose to my mom, who helped.
She was also a behavior analyst.
So together we were moreeffective because, even though
it was my mom, you can take awaythat little bit of the emotion
and say, okay, I'm not going tohave an emotional response to
(08:12):
this.
But how can I look at this fromanother perspective?
There's environmentalconditions that I can be
effective in manipulating sothat I can be helpful, and then
I can go to the side and, youknow, handle my emotions
separately.
But not having an emotionalresponse in the moment was very
helpful.
Edith Gendron (08:29):
We teach people to put up that.
I call it a glass wall standbehind.
Bobbi Barber (08:33):
It be a clinician.
It is.
It's about that perspectivetaking.
It's really good stuff, allright, so really it's.
Robin Rountree (08:40):
Let's give a really easy example.
Okay, I hate the color yellow.
You stick me in a room that'scompletely yellow when I'm not
feeling good.
Maybe I can't express to youthat I'm not feeling good, so
you would put me in a roomknowing what you know.
The environment changed me intoa nice blue or green room and I
might cheer up a little bit, isthat sort?
Edith Gendron (08:59):
of a very that's right on.
Okay, absolutely right on.
Okay, absolutely right on.
You know, anything that causesthe wanted behavior to continue
is something you give someonethat they want to take away,
something they don't want.
A yellow room right, that'ssuper basic.
Robin Rountree (09:17):
Okay, okay, awesome.
So what were some ways that youuse these principles in taking
care of your mom who haddementia?
Bobbi Barber (09:25):
Okay.
So I wrote down a list, but Ibrought the top five.
Okay, the first one is themedication.
I wrote that because hermedication was a huge
environmental condition that weneeded to figure out and as a
caregiver, had we not realizedthat, how medications are so
damaging and affecting.
(09:45):
So medication compliance was apart of that.
How can we make sure that sheis taking her medications
correctly?
So we took out all of her meds,wrote them all out, looked them
all up.
We consulted with a nurse andshe said this is for what?
All the things.
Okay, well, what can we narrowdown?
And that was sometimes a littlebit of a talk between her
primary and ourselves Like theseare her current meds.
(10:05):
Can we get them to once a dayso that we don't have to worry
about her taking it twice a day?
Right and then there's a heromachine.
Have you heard of this machine?
Robin Rountree (10:14):
No.
Bobbi Barber (10:14):
Okay, it's a dispenser.
It's an automatic dispenserthat you program and put them in
the back of the cups and thenyou set it for what time of day
or how many times a day, and itwill.
We have an app so we could seeif it was dispensed and it tells
you how many are in there, andso it would light up to blink
and then they would drop intothe cup and so automatically.
(10:36):
She's not adjusting, or did I?
Edith Gendron (10:38):
take this.
Bobbi Barber (10:39):
I don't remember if I took this or not, so that
machine was super helpful.
So narrowing down hermedications into the least
amount of medications one time aday and then using that machine
was very helpful.
And then we paired it withcolored cups, so isolating her
environment.
So she didn't have 30 choicesof cups.
(10:59):
Choices of cups there's a watercup that's purple and water
goes in that one and she wascomfortable with that.
Then there was the yellow cupis where she would put her meds.
So if the yellow cup was emptythen I knew we could see.
Okay, she did take those hermeds because they were in just
the yellow cup.
So we paired up colors withthings that were familiar, that
(11:21):
she could see, that were brightand easy too.
So sanitizing her environmentwas one of those things, making
sure that there's not 40 options.
Robin Rountree (11:30):
So sanitize.
You're not talking aboutcleaning.
You're talking about minimizingthe amount of things that she
is looking at and that her brainhas to handle.
Edith Gendron (11:40):
Taking away what she doesn't need, right?
Yes, choice is important, butif you've got seven cups instead
of one yellow and one purple,you've got a problem, right?
Bobbi Barber (11:49):
And if you start to pair things consistently over
time then it doesn't have tobecome a fight, a battle or you
get into those arguments aboutor just the exchange, and so
then she has a lot moreindependence because she knows
that.
She knows that, she knows thather purple cup is her water cup,
right.
Edith Gendron (12:09):
Yes.
Bobbi Barber (12:09):
Yeah, so the sanitizing of the environment
was about minimizingdistractions, complications, or
just she would get overwhelmed,and then overwhelming becomes,
anxious, becomes, then I don'tmake good decisions, then she
just it just said everybody else.
Edith Gendron (12:25):
You're heading for a catastrophic reaction or
withdrawal, and that's as badPeople think.
Well, she's quiet, yeah, butit's hard to bring somebody back
.
Robin Rountree (12:33):
So yeah, all good stuff and like a pack
teaches, you know when you stillgive them their choices.
Getting dressed is do you wantthis one or this one?
Give them a nice, easy choiceof two.
Edith Gendron (12:45):
But this system, the hero machine, that whole
system gives her all the control, all the power.
So it's choice in that way, inthe sense of I'm in control of
my environment, of my actions,Could she have chosen not to
take them out of the yellow cup?
Yeah, but then they can tellright.
So they can tell right, so theycan make an adjustment to that.
So it's good.
Robin Rountree (13:09):
And another thing I'm thinking of is our
frustration that some doctorswouldn't prescribe physical
therapy, because, oh, they'llnever remember.
But you definitely showed usthat Getting those two things
every day has a pattern.
It does.
Bobbi Barber (13:22):
There's a lot to say for consistency, and that
was on there creating a dailyplan because you can have
autonomy and still havepredictability, and a lot of the
times when you don't have apredictable system, that
increases fear and anxiety.
I don't know what is next, Idon't know, I become out of
sorts, which is a part of thatdementia, part of that fear
(13:42):
based of I don't know what'scoming up next, Then aggravation
, agitation, and then you knowall the things that happen.
Edith Gendron (13:49):
We all want to know what's going on in our
lives.
Surprises are nice if they comein a Tiffany box, but that's
about it right.
But, yeah, knowing whensomething is due is important.
The routine is critical, andthat's what Bobby's describing
this routine and yes, thank youvery much, our people can too
learn, so there, yes.
(14:11):
And we know from Josh Freitas.
Have you ever read his bookDementia Concepts?
Josh Freitas is a fabulousyoung man who does work with
folks and has done a lot of workon color.
So when you talk about colorcoordination, it's like, yeah,
josh, would love to hear that.
Bobbi Barber (14:26):
He's right.
Well, there's so much that youcan do to set them up to be
successful, and that's whatwe're talking about really is,
you know, in the beginning withthe environment, they're called
antecedent manipulations how canI set you up to be successful?
And then brings in theirpersonality, their history, who
they are as people, for theautonomy, do they like
(14:48):
predictability?
Do they enjoy the sense ofindependence?
What does that look like in thehere and the now?
Sanitizing the environment canstill be a part of that, with
limiting the overwhelmingness bystill not compromising their
independence.
And so we found a lot of that.
A lot of the ABA came into it.
(15:09):
So there's like, you know,there's like a hundred little
things that we did in there,especially if there was
frustration, aggravation orirritation, you know how do you
deescalate too.
Those are environmentalconditions and things that you
can do as well.
These were just like littlethings that we could do in the
very beginning to set her up tobe successful and for all of the
care team that she wassurrounded with to be successful
(15:30):
too.
Edith Gendron (15:31):
Focusing on her abilities, not on what she no
longer could do.
And that's the core, positiveapproach to care right,
maintaining that dignity andindependence.
Robin Rountree (15:39):
Yes.
Bobbi Barber (16:10):
So talk to me a little bit about Right,
maintaining that dignity andindependence, but I do eat
something.
So is that kind of what you'retalking about?
Well, predictability does havea purpose, right?
So if your mom wakes up and shedoesn't know where she is,
which can be very overwhelming,could be very scary so if her
shoes or her slippers are in thesame spot every single time,
that could be that one stimuli,that one signal that grounds her
in the moment.
So if there are opportunitiesto build in variation and
excitement and something fun tobreak up the monotony.
(16:31):
But I have found, even withanybody, if you get agitated,
you become fearful.
Fear then leads to so what isthat grounding thing that keeps
you centered in the moment?
And for some it could be thatthis is where my stuff is, this
is my book, this is my remote,this is my chair, this is my
go-to thing and you cancapitalize on that I'm thinking
(16:55):
because my toothbrush is in thesame place every morning.
Robin Rountree (16:58):
If it wasn't and I know sometimes if you're
living in memory care thecleaning staff may move it to a
different place, and that wouldkind of upset me, I have to say,
yeah, it would, yeah.
Edith Gendron (17:09):
It would, it would.
It's really really important tohave that.
You know, when you talk aboutseeing her shoes, some people
use a little photograph by thebedside right of the person.
It's like, yeah, okay, I have aline, especially the person
with the adult child or theirfavorite pet.
Right Anything to help themorient to their place and time
(17:29):
as quickly as possible with asmuch dignity as possible.
She figured out she belongedthere, right.
We didn't have to tell her.
Robin Rountree (17:37):
Yeah, because you may or may not be believed.
Edith Gendron (17:41):
Right, absolutely , yeah, absolutely or may not be
believed.
Bobbi Barber (17:42):
Right, absolutely yeah absolutely, because memory
then becomes you know if it'sinterrupted or there's those
where you're like, wait a second, how do I orient back?
And sometimes just an objectitself will be comforting enough
to reduce the fear, to calmdown and realize this is, I
(18:03):
don't need to be afraid, this isnot a fearful situation, so
therefore I can.
Then it signals that thesebehaviors then come into play,
which is a part of like okay, mytoothbrush signals let's brush
teeth, right, right.
So predictability is great foreverybody.
Robin Rountree (18:19):
And something else.
Trips outside the home can be alittle stressful, very
stressful, and it was just sucha change in the environment for
your mom that would add to thestress.
Is that part of it?
Bobbi Barber (18:31):
My mom particularly had early childhood
trauma that she never fullyrealized, she didn't seek help
for, and we would see it breakthrough in different instances
through time and being her child, I didn't really know what that
meant until I grew up, had myown family, went through
(18:53):
training, became a licensedmental health counselor, and
then she would tell me thingsI'm like, oh my gosh, that is
awful, right, like we knew itwas awful.
But as I became a professional,I'm like that is trauma.
You have unrealized trauma thathas never fully worked itself
out.
So, as it was coming through,okay, that's a trauma response,
(19:14):
oh, she's having a memory and itstarted to break through more
as she was declining, and partof that was she was fearful of
the outside world and part ofthat was she was fearful of the
outside world.
And so the more time that shehad spent keeping her
environment isolated and herisolated, the stronger those
stories, the stronger thatthought, that imagination had
(19:35):
become, to the point where shereally did not want to leave the
house.
And that's why you gave me thatgreat resource, which was the
virtual doctor Right, she lovedit.
She lit up on screen.
I'm like you don't.
Which was the virtual doctor?
She loved it.
She lit up on screen.
I'm like you don't have to goto the doctor, but we can talk
to her on virtual and I'll sitwith you.
And we did it and it wasfantastic and my sister-in-law
could be on it.
(19:55):
So it was a collaborative andit was a way to invite other
people in the family whocouldn't we all can't schlep to
the doctor's office and toneurology, and it also lowered
her defenses.
So she wasn't in a doctor'senvironment, right?
So the environment of adoctor's office, with the people
coming in and out, hadtraditionally signaled for her.
(20:17):
She would behave verydifferently in the presence of a
doctor Interesting.
Yeah, she would be very stoicand just everything's fine,
everything's fine, she wouldanswer how they wanted to hear
it so she could get out.
She was always motivated toleave.
So when she was in her own homeand we had the virtual doctor,
she was so calm, she wasanswering questions, she was
(20:38):
very interactive.
So that was a blessing thebiggest one so far, so that was
very helpful for her.
Robin Rountree (20:44):
And that was what.
When we talked to Dr Laird I'massuming that's who you may be
talking about the concept madesense to me, but I'm like it's
great to hear that a person.
They really were more relaxedat home A hundred times.
Bobbi Barber (20:58):
It was amazing.
Robin Rountree (21:00):
So we've got some this great information
about applied behavior analysisthat you describe very well, we
could spend weeks talking aboutall the applications of ABA.
But let's put you like you'relooking at a caregiver who's new
to this whole thing.
Mom is staying in, let's say,the guest room for now.
How could they go in there andlook at the environment and see
(21:24):
a few things they could improve?
Bobbi Barber (21:26):
First look for safety hazards.
Right, you know, is thereanything tripping the grounds,
knowing how the person thatshe's caring for, what is their
gait, what are their abilities,how do they move?
It would be, first of all, takeinventory from a non-emotional
state.
What are their strengths, whatare their weaknesses?
Okay, so let's capitalize onthe strengths.
(21:46):
Let's minimize weaknesses oropportunities that they may or
may not hurt themselves.
So is there a predictability?
What side of the bed do theysleep on?
What signals can we have in theroom?
There's so many things.
We could go down the list, butlook at the environment and see
how do they even move in thespace would probably be my first
.
One is just to observe them.
That's great.
Edith Gendron (22:06):
Some of the things we have to keep an eye on
, too, are things we here mighttake for granted, things like
the pretty bar of soap thatlooks like I don't know an ice
cream cone or a flower orsomething other than what it is.
So sometimes when we think ofsafety, we have to go a little
bit beyond the get rid of therug Right.
Bobbi Barber (22:24):
Right, yeah, I was just thinking like a tripping
hazard if they shuffled theirfeet.
Robin Rountree (22:28):
Yeah, yeah, yeah , yeah, absolutely, absolutely.
Edith Gendron (22:30):
That may be Type of shoes right the type of
slippers.
Robin Rountree (22:33):
Yeah, and it is hard to have that non-emotional
judgment, oh for sure.
So that may be to tell yourdoctor.
Could you give me a littlephysical therapy so I could get
the safety assessment?
Or just I need a safetyassessment.
Do you know where I could getone?
(22:53):
Because it is so hard to seewhen it's your person to see
that decline in real time.
Bobbi Barber (22:56):
Yes, you have the initial emotional response which
is oh, my goodness, this is toomuch, this is so sad.
There's big emotions as anadult that you have looking at
your mom, your dad or yourperson.
Right, that can be devastating.
And if it goes unchecked, youjust go into the motions of oh,
(23:18):
I'm going to care, I'm going tocare for them and take care of
them as doing the things.
But when we ignore thatemotional residue that we bring,
that's a third element in thatrelationship that you may not be
prepared for.
Edith Gendron (23:33):
Yeah, you have to name it and you have to work
through it.
One of the emotions thathappens so often, that people
disregard, is grief.
Bobbi Barber (23:41):
It's an anticipatory type of grief.
There's 13 types of grief.
Did you know that?
Edith Gendron (23:48):
Yeah, there's a lot of grief.
There's a lot of grief, thereis a lot.
One of the issues with ourworld is that you can't lay the
grief down, you can't set itaside.
It continues.
It's like an aggregate it growsand it stays with you.
And you know, nobody sends youa casserole or some flowers.
It's sticky.
Bobbi Barber (24:02):
It's a sticky area .
Edith Gendron (24:03):
Completely different form of grieving than
any other type.
Bobbi Barber (24:07):
It's stressful.
It's a stressful type of grief.
And then you add on to that ifyou have children at home or
other things that you areresponsible to and for, and then
if there's other siblings orissues or another parent.
Edith Gendron (24:20):
Or you're not well yourself.
Bobbi Barber (24:22):
Oh my gosh, the layers that can compound
something.
Edith Gendron (24:27):
One of the things we teach our families and we
teach our primary carephysicians that work with us, is
that it's not just the personwith the diagnosis.
The whole family, everyonethat's involved in that intimate
circle, is involved in thisillness.
That is part of the illness.
They need to be cared for andtreated as well.
Bobbi Barber (24:45):
I know, and that's when I first started.
When I first contacted you, itwas flooded Just information.
Where do I start?
Where do I begin?
How is this happening to me?
What am I going to do?
Where do I start?
So I had no grounding and itwas just pacing.
Edith Gendron (25:05):
Yeah, I don't want this.
I don't want this to behappening.
Bobbi Barber (25:08):
Oh, I don't want this, I want this in her life.
Yeah, that devastation of thisis my mom.
What's going on?
Robin Rountree (25:16):
Yes.
Bobbi Barber (25:17):
It was hard.
Robin Rountree (25:18):
I'm getting all sorts of chills over here, but
that's why we are here, theAlzheimer's and Dementia
Resource Center, and I got togive the plug.
If you would like to support usin doing the work that we do,
our website is adrccaresorg.
Slash donate.
We would appreciate yoursupport.
Bobbi, I know when we talkedabout you coming on this podcast
(25:39):
, you thought you may have abook in you and I got to say I
think you may have a book in you.
Bobbi Barber (25:44):
We discussed a little bit of this, because
there is the ABA part, which isthe environment, and then
there's the emotional stuff,which is the LMHC stuff, that it
will never or cease to surpriseme, the amount of layers as you
process this part, sometimes,of our lives, this part of the
(26:04):
story that we were never, like,prepared for.
Edith Gendron (26:07):
Nobody wakes up or grows up as a little kid and
says, gee, I want to be a carepartner to my mom when she has
Alzheimer's disease someday.
Bobbi Barber (26:14):
And it's so different to look at your
parents that way.
It challenges you on everylevel.
Edith Gendron (26:22):
Yep, one of the things that I think we need to
mention, because we are talkingabout responses to the
environment, is with progressionthe environment has a greater
potential to be a biggerinfluence on a person.
Others do too, here at thistable.
If somebody encourages us toeat a donut, we can say, gee, no
thanks, it's not good for myhealth.
(26:42):
We understand With progressionthat ability to weigh good
choices goes away, and so theenvironment, other people who
are part of the environment.
They can have a stronger andstronger influence on the
person's response to thatstimuli.
So it gets tricky.
Robin Rountree (27:00):
Yeah, and it just the how you teach us.
Bobbi Barber (27:03):
You know, your vision changes and so not to
come up from behind becauseyou're going to scare the crap
out of them, right?
Robin Rountree (27:08):
Right, oh, so much to uncover.
Bobbi Barber (27:10):
Well, it is Also how, at a senior's age, how do
they organize information intheir mind?
Robin Rountree (27:17):
Right.
Bobbi Barber (27:17):
So they are also absorbing everything that's
taking place.
Sensory overload is a reallybig thing, like your nervous
system just gets flooded.
And then how do we think, howdo we behave?
How do we talk?
How do they not talk?
They don't even.
Sometimes you can't evenprocess words right.
And then if there's anyregressions in development or
(27:39):
old things bust through andemotions come out, memories
emerge or past life experiencesthat you didn't even know
existed.
So many things right thatyou're just like wait what?
Edith Gendron (27:51):
One of the things we remind families of is to be
very cautious around the majorholidays, because you know, when
you take everything down andthen put up all that Christmas
stuff, for example, it's a wholenew environment and you got
flashing lights and music andwow, yes, tell our listeners one
more time what ABA is.
Bobbi Barber (28:10):
Applied Behavior Analysis.
Robin Rountree (28:12):
Very nice, and so you are the founder and CEO
of Mindful Counseling Florida.
If someone wants to reach outto you, is there a phone number
or website?
Bobbi Barber (28:21):
Sure, mindfulcounselingflcom or at
Gmail, it's the exact same thing.
I can be reached at407-796-1580.
Robin Rountree (28:31):
We'll put that in the show notes in case you're
looking for that.
Thank you so much for using ourservices and then for giving
back and letting us know how youdid it a little bit better so
much.
Bobbi Barber (28:41):
I feel like you're a great resource.
It was so helpful and it reallydid pivot us and better us,
meaning my family in directionsthat we felt were very useful,
and to feel like you have powerwhen there's a powerless
situation is just beyond.
It's huge, yeah, yeah.
Robin Rountree (29:04):
Please make sure to subscribe to our podcast
Informed Aging.
Tell your family and friendsabout us.
You can find us at facebookcomslash informed aging.
Today's episode was recorded atADRC's podcast studio.
That's it for now.
We are looking forward to ournext visit.
Welcome to Informed Aging, a podcast about
health help and hard decisionsfor older adults.
I'm Robin Roundtree, a formerfamily caregiver.
I've worked in the home careindustry and now work for the
Alzheimer's and DementiaResource Center.
Edith Gendron (00:19):
Hi, thank you for joining us today.
I'm Edith Gendron Robin'sco-host.
I'm the executive director hereat Alzheimer's and Dementia
Resource Center.
I have 40 years of working withadults, primarily seniors and
elders in need.
I'm a certified positiveapproach to care trainer and
consultant, and ADRC is adesignated positive approach to
care agency.
(00:39):
Also, I'm a certified trainerfor savvy caregiver.
Robin Rountree (00:43):
The thoughts and opinions expressed belong to
Edith and I, not our wonderfulemployers and sponsors.
This podcast is a service ofthe Alzheimer's and Dementia
Resource Center.
We are not affiliated with theAlzheimer's Association.
Before making any significantchanges in your life or your
person's life, please consultyour own experts.
Edith Gendron (01:04):
Today we're going to be talking with Ms Bobbi
Barber.
She is a licensed mental healthcounselor, a behavioral analyst
and a clinical behavior analyst.
That's a mouthful, we'll beright back.
Robin Rountree (01:16):
Senior Helpers is the only home care agency
offering a revolutionary new wayto approach senior care the
Life Profile Assessment.
This data-based app is acrucial tool in helping seniors
age safely and successfully athome.
Combined with our provenin-home care programs and
(01:36):
trained caregivers, seniorHelpers Life Profile is leading
the way to better outcomes forour clients.
For more information, log on toseniorhelperscom.
Slash Orlando.
For over 37 years, theAlzheimer's and Dementia
Resource Center, adrc, hasserved as a Central
(01:57):
Florida-based grassroots,nonprofit and community resource
center.
They are dedicated to providingsupport and hope for families
and individuals caring forsomeone they love who is living
with Alzheimer's disease orother dementia-related illnesses
.
Adrc empowers caregivers withthe knowledge, support, skills
and strategies they need to helpthem confidently prepare for
(02:18):
the challenges that lie ahead.
To learn more, visit thewebsite adrccaresorg.
To learn more, visit thewebsite adrccaresorg.
We are back with Bobbi Barber,and can we just briefly go
through all the letters?
After your name?
We've got MS Master of ScienceNice.
Bobbi Barber (02:35):
LMHC Licensed Mental Health Counselor, bcba
Board Certified Behavior Analystand CTP Certified Trauma
Professional.
Wow, there you go.
Edith Gendron (02:45):
Sheified Trauma Professional.
Wow, there you go, she's thealphabet woman.
Bobbi Barber (02:47):
I know I spent a lot of time acquiring those.
Edith Gendron (02:51):
I bet you did A lot of work, a lot of work.
Robin Rountree (02:53):
We're going to talk about behavior and how to
modify it, but first can youtalk to us about how you came to
learn about Alzheimer's andDementia Resource Center Sure?
Bobbi Barber (03:04):
One of the women that are in my office.
She's another mental healthcounselor.
We were just talking about ourparents.
Both of our moms have had somemental health issues and then,
of course, at the beginningstages of trying to figure out
what is the diagnosis, and sherecommended that here's the
resource, because I was like, ohmy gosh, it is so overwhelming,
and you and I had aconversation, I called to find
(03:25):
out, and then it was just here.
You spent so much time with me,it was so gracious and lovely,
and then I just started to howcan I take this resource and
help my mom?
And so that became thebeginning of the arduous process
of, you know, getting herdiagnosed, getting some
information and then putting itall together in a way that was
(03:46):
beneficial to her life.
Robin Rountree (03:48):
Wow, so how long did you help care for your mom?
Bobbi Barber (03:52):
My mom.
Well, that's the tricky thing,and I was thinking about that
today.
She had symptoms and signs waybefore I knew what it was.
Edith Gendron (04:02):
Right, not unusual Not unusual.
Bobbi Barber (04:04):
We spent many years helping and caring in ways
that we were just like graspingat straws, didn't really know
what this was.
There was a lot of masking, alot of oh well, it's this, oh no
, it's this, and you know she'sfunctional.
But then it came to a pointwhere she was no longer capable
of working outside of the house,and then when she stayed at
(04:27):
home and then just starteddeclining, then it was all.
The other elements were removedand so we had a clearer picture
.
So that was probably threeyears, and then the last year
2023, was probably the fastestdecline.
That's when I reached out to you.
Was probably the fastestdecline.
That's when I reached out toyou.
Edith Gendron (04:43):
How old was your mom when you first started
thinking?
Bobbi Barber (04:53):
When my daughter was born, she had open heart
surgery and she ended up havinga pacemaker put in and coming
out of anesthesia she had asmall stroke and then it seemed
that that wasn't the issue.
Probably six months into herrecovery she started to talk
about her neighbors and so shehad neighbors and the story
became elaborate and moreelaborate over the years and at
(05:16):
first you were like maybe theneighbors are a problem.
I don't know, them.
So you just took a lot of thingsthat she said.
So it was about 10 years.
She spent five years reallydiscussing the problem that she
had had with her neighbors andthen we started to be like, okay
, well, that's, I don't thinkthat that's what's really
happening.
But how do you prove it?
Because she lived alone and shewas working.
So the second uh half, so itwas probably about an 11 year
(05:41):
journey total so the first fivewere just very dismissed.
The last, the second five, thefirst three were like.
The last two was like this isit?
This is what dementia lookslike?
This is alzheimer's.
Edith Gendron (05:55):
This is cognitive decline we know now, of course,
through research and other goodevidence, that changes in the
brain can occur up to 20 yearsahead of time.
I know so before we reallyrecognize symptoms.
And yeah, you know, we had thesame thing in our family.
We had someone who had a reallystressful job, and so we all
wrote it off for years.
Bobbi Barber (06:16):
You can discount a lot.
Edith Gendron (06:18):
You can.
Bobbi Barber (06:18):
You can convince yourself oh, it's not that, or
it's this.
It masks so well.
Edith Gendron (06:23):
It does.
Robin Rountree (06:24):
It really does.
You had called me a littlewhile ago and said I want to
talk about how I used appliedbehavior analysis as a caregiver
, and I said wow, those are somebig words you are throwing at
me.
So give me a little definitionof what you mean by applied
behavior analysis.
Bobbi Barber (06:41):
Okay, ABA or applied behavior analysis.
It's a science and it's how westudy the interaction between
environments and behaviors.
So it's almost this externalview when we can't access the
interstate how do you feel, howdo you think?
And it's applied to workingwith traditionally with
developmental or intellectualdisabilities and animals.
(07:03):
You may hear it at SeaWorld alot.
We use positive reinforcementand pairing and it's because
it's the interaction between thethings that you can measure and
observe all the things in theenvironment that has helped me,
my history with that, helping mymom, because a lot of the times
she didn't know how she felt.
She didn't know and herthinking was so erratic or
(07:24):
unexplainable she didn't havethe words for it.
So we can look at theenvironment and that's what ABA
is is how can we makeenvironmental modifications to
improve behaviors?
And then we isolate behaviorsfor increased and or decreased,
and it totally applies to caringfor dementia, alzheimer's,
seniors and any kind ofcognitive delay.
Edith Gendron (07:44):
That's a positive approach to care.
Yeah, it is we look at what wecan control, and that's the
environment.
Exactly, and the environment ismore than the trees and the
flowers.
Bobbi Barber (07:51):
It's all the stimuli that are present right.
So myself, I'm a behavioranalyst.
My sister-in-law, who livedclose to my mom, who helped.
She was also a behavior analyst.
So together we were moreeffective because, even though
it was my mom, you can take awaythat little bit of the emotion
and say, okay, I'm not going tohave an emotional response to
(08:12):
this.
But how can I look at this fromanother perspective?
There's environmentalconditions that I can be
effective in manipulating sothat I can be helpful, and then
I can go to the side and, youknow, handle my emotions
separately.
But not having an emotionalresponse in the moment was very
helpful.
Edith Gendron (08:29):
We teach people to put up that.
I call it a glass wall standbehind.
Bobbi Barber (08:33):
It be a clinician.
It is.
It's about that perspectivetaking.
It's really good stuff, allright, so really it's.
Robin Rountree (08:40):
Let's give a really easy example.
Okay, I hate the color yellow.
You stick me in a room that'scompletely yellow when I'm not
feeling good.
Maybe I can't express to youthat I'm not feeling good, so
you would put me in a roomknowing what you know.
The environment changed me intoa nice blue or green room and I
might cheer up a little bit, isthat sort?
Edith Gendron (08:59):
of a very that's right on.
Okay, absolutely right on.
Okay, absolutely right on.
You know, anything that causesthe wanted behavior to continue
is something you give someonethat they want to take away,
something they don't want.
A yellow room right, that'ssuper basic.
Robin Rountree (09:17):
Okay, okay, awesome.
So what were some ways that youuse these principles in taking
care of your mom who haddementia?
Bobbi Barber (09:25):
Okay.
So I wrote down a list, but Ibrought the top five.
Okay, the first one is themedication.
I wrote that because hermedication was a huge
environmental condition that weneeded to figure out and as a
caregiver, had we not realizedthat, how medications are so
damaging and affecting.
(09:45):
So medication compliance was apart of that.
How can we make sure that sheis taking her medications
correctly?
So we took out all of her meds,wrote them all out, looked them
all up.
We consulted with a nurse andshe said this is for what?
All the things.
Okay, well, what can we narrowdown?
And that was sometimes a littlebit of a talk between her
primary and ourselves Like theseare her current meds.
(10:05):
Can we get them to once a dayso that we don't have to worry
about her taking it twice a day?
Right and then there's a heromachine.
Have you heard of this machine?
Robin Rountree (10:14):
No.
Bobbi Barber (10:14):
Okay, it's a dispenser.
It's an automatic dispenserthat you program and put them in
the back of the cups and thenyou set it for what time of day
or how many times a day, and itwill.
We have an app so we could seeif it was dispensed and it tells
you how many are in there, andso it would light up to blink
and then they would drop intothe cup and so automatically.
(10:36):
She's not adjusting, or did I?
Edith Gendron (10:38):
take this.
Bobbi Barber (10:39):
I don't remember if I took this or not, so that
machine was super helpful.
So narrowing down hermedications into the least
amount of medications one time aday and then using that machine
was very helpful.
And then we paired it withcolored cups, so isolating her
environment.
So she didn't have 30 choicesof cups.
(10:59):
Choices of cups there's a watercup that's purple and water
goes in that one and she wascomfortable with that.
Then there was the yellow cupis where she would put her meds.
So if the yellow cup was emptythen I knew we could see.
Okay, she did take those hermeds because they were in just
the yellow cup.
So we paired up colors withthings that were familiar, that
(11:21):
she could see, that were brightand easy too.
So sanitizing her environmentwas one of those things, making
sure that there's not 40 options.
Robin Rountree (11:30):
So sanitize.
You're not talking aboutcleaning.
You're talking about minimizingthe amount of things that she
is looking at and that her brainhas to handle.
Edith Gendron (11:40):
Taking away what she doesn't need, right?
Yes, choice is important, butif you've got seven cups instead
of one yellow and one purple,you've got a problem, right?
Bobbi Barber (11:49):
And if you start to pair things consistently over
time then it doesn't have tobecome a fight, a battle or you
get into those arguments aboutor just the exchange, and so
then she has a lot moreindependence because she knows
that.
She knows that, she knows thather purple cup is her water cup,
right.
Edith Gendron (12:09):
Yes.
Bobbi Barber (12:09):
Yeah, so the sanitizing of the environment
was about minimizingdistractions, complications, or
just she would get overwhelmed,and then overwhelming becomes,
anxious, becomes, then I don'tmake good decisions, then she
just it just said everybody else.
Edith Gendron (12:25):
You're heading for a catastrophic reaction or
withdrawal, and that's as badPeople think.
Well, she's quiet, yeah, butit's hard to bring somebody back
.
Robin Rountree (12:33):
So yeah, all good stuff and like a pack
teaches, you know when you stillgive them their choices.
Getting dressed is do you wantthis one or this one?
Give them a nice, easy choiceof two.
Edith Gendron (12:45):
But this system, the hero machine, that whole
system gives her all the control, all the power.
So it's choice in that way, inthe sense of I'm in control of
my environment, of my actions,Could she have chosen not to
take them out of the yellow cup?
Yeah, but then they can tellright.
So they can tell right, so theycan make an adjustment to that.
So it's good.
Robin Rountree (13:09):
And another thing I'm thinking of is our
frustration that some doctorswouldn't prescribe physical
therapy, because, oh, they'llnever remember.
But you definitely showed usthat Getting those two things
every day has a pattern.
It does.
Bobbi Barber (13:22):
There's a lot to say for consistency, and that
was on there creating a dailyplan because you can have
autonomy and still havepredictability, and a lot of the
times when you don't have apredictable system, that
increases fear and anxiety.
I don't know what is next, Idon't know, I become out of
sorts, which is a part of thatdementia, part of that fear
(13:42):
based of I don't know what'scoming up next, Then aggravation
, agitation, and then you knowall the things that happen.
Edith Gendron (13:49):
We all want to know what's going on in our
lives.
Surprises are nice if they comein a Tiffany box, but that's
about it right.
But, yeah, knowing whensomething is due is important.
The routine is critical, andthat's what Bobby's describing
this routine and yes, thank youvery much, our people can too
learn, so there, yes.
(14:11):
And we know from Josh Freitas.
Have you ever read his bookDementia Concepts?
Josh Freitas is a fabulousyoung man who does work with
folks and has done a lot of workon color.
So when you talk about colorcoordination, it's like, yeah,
josh, would love to hear that.
Bobbi Barber (14:26):
He's right.
Well, there's so much that youcan do to set them up to be
successful, and that's whatwe're talking about really is,
you know, in the beginning withthe environment, they're called
antecedent manipulations how canI set you up to be successful?
And then brings in theirpersonality, their history, who
they are as people, for theautonomy, do they like
(14:48):
predictability?
Do they enjoy the sense ofindependence?
What does that look like in thehere and the now?
Sanitizing the environment canstill be a part of that, with
limiting the overwhelmingness bystill not compromising their
independence.
And so we found a lot of that.
A lot of the ABA came into it.
(15:09):
So there's like, you know,there's like a hundred little
things that we did in there,especially if there was
frustration, aggravation orirritation, you know how do you
deescalate too.
Those are environmentalconditions and things that you
can do as well.
These were just like littlethings that we could do in the
very beginning to set her up tobe successful and for all of the
care team that she wassurrounded with to be successful
(15:30):
too.
Edith Gendron (15:31):
Focusing on her abilities, not on what she no
longer could do.
And that's the core, positiveapproach to care right,
maintaining that dignity andindependence.
Robin Rountree (15:39):
Yes.
Bobbi Barber (16:10):
So talk to me a little bit about Right,
maintaining that dignity andindependence, but I do eat
something.
So is that kind of what you'retalking about?
Well, predictability does havea purpose, right?
So if your mom wakes up and shedoesn't know where she is,
which can be very overwhelming,could be very scary so if her
shoes or her slippers are in thesame spot every single time,
that could be that one stimuli,that one signal that grounds her
in the moment.
So if there are opportunitiesto build in variation and
excitement and something fun tobreak up the monotony.
(16:31):
But I have found, even withanybody, if you get agitated,
you become fearful.
Fear then leads to so what isthat grounding thing that keeps
you centered in the moment?
And for some it could be thatthis is where my stuff is, this
is my book, this is my remote,this is my chair, this is my
go-to thing and you cancapitalize on that I'm thinking
(16:55):
because my toothbrush is in thesame place every morning.
Robin Rountree (16:58):
If it wasn't and I know sometimes if you're
living in memory care thecleaning staff may move it to a
different place, and that wouldkind of upset me, I have to say,
yeah, it would, yeah.
Edith Gendron (17:09):
It would, it would.
It's really really important tohave that.
You know, when you talk aboutseeing her shoes, some people
use a little photograph by thebedside right of the person.
It's like, yeah, okay, I have aline, especially the person
with the adult child or theirfavorite pet.
Right Anything to help themorient to their place and time
(17:29):
as quickly as possible with asmuch dignity as possible.
She figured out she belongedthere, right.
We didn't have to tell her.
Robin Rountree (17:37):
Yeah, because you may or may not be believed.
Edith Gendron (17:41):
Right, absolutely , yeah, absolutely or may not be
believed.
Bobbi Barber (17:42):
Right, absolutely yeah absolutely, because memory
then becomes you know if it'sinterrupted or there's those
where you're like, wait a second, how do I orient back?
And sometimes just an objectitself will be comforting enough
to reduce the fear, to calmdown and realize this is, I
(18:03):
don't need to be afraid, this isnot a fearful situation, so
therefore I can.
Then it signals that thesebehaviors then come into play,
which is a part of like okay, mytoothbrush signals let's brush
teeth, right, right.
So predictability is great foreverybody.
Robin Rountree (18:19):
And something else.
Trips outside the home can be alittle stressful, very
stressful, and it was just sucha change in the environment for
your mom that would add to thestress.
Is that part of it?
Bobbi Barber (18:31):
My mom particularly had early childhood
trauma that she never fullyrealized, she didn't seek help
for, and we would see it breakthrough in different instances
through time and being her child, I didn't really know what that
meant until I grew up, had myown family, went through
(18:53):
training, became a licensedmental health counselor, and
then she would tell me thingsI'm like, oh my gosh, that is
awful, right, like we knew itwas awful.
But as I became a professional,I'm like that is trauma.
You have unrealized trauma thathas never fully worked itself
out.
So, as it was coming through,okay, that's a trauma response,
(19:14):
oh, she's having a memory and itstarted to break through more
as she was declining, and partof that was she was fearful of
the outside world and part ofthat was she was fearful of the
outside world.
And so the more time that shehad spent keeping her
environment isolated and herisolated, the stronger those
stories, the stronger thatthought, that imagination had
(19:35):
become, to the point where shereally did not want to leave the
house.
And that's why you gave me thatgreat resource, which was the
virtual doctor Right, she lovedit.
She lit up on screen.
I'm like you don't.
Which was the virtual doctor?
She loved it.
She lit up on screen.
I'm like you don't have to goto the doctor, but we can talk
to her on virtual and I'll sitwith you.
And we did it and it wasfantastic and my sister-in-law
could be on it.
(19:55):
So it was a collaborative andit was a way to invite other
people in the family whocouldn't we all can't schlep to
the doctor's office and toneurology, and it also lowered
her defenses.
So she wasn't in a doctor'senvironment, right?
So the environment of adoctor's office, with the people
coming in and out, hadtraditionally signaled for her.
(20:17):
She would behave verydifferently in the presence of a
doctor Interesting.
Yeah, she would be very stoicand just everything's fine,
everything's fine, she wouldanswer how they wanted to hear
it so she could get out.
She was always motivated toleave.
So when she was in her own homeand we had the virtual doctor,
she was so calm, she wasanswering questions, she was
(20:38):
very interactive.
So that was a blessing thebiggest one so far, so that was
very helpful for her.
Robin Rountree (20:44):
And that was what.
When we talked to Dr Laird I'massuming that's who you may be
talking about the concept madesense to me, but I'm like it's
great to hear that a person.
They really were more relaxedat home A hundred times.
Bobbi Barber (20:58):
It was amazing.
Robin Rountree (21:00):
So we've got some this great information
about applied behavior analysisthat you describe very well, we
could spend weeks talking aboutall the applications of ABA.
But let's put you like you'relooking at a caregiver who's new
to this whole thing.
Mom is staying in, let's say,the guest room for now.
How could they go in there andlook at the environment and see
(21:24):
a few things they could improve?
Bobbi Barber (21:26):
First look for safety hazards.
Right, you know, is thereanything tripping the grounds,
knowing how the person thatshe's caring for, what is their
gait, what are their abilities,how do they move?
It would be, first of all, takeinventory from a non-emotional
state.
What are their strengths, whatare their weaknesses?
Okay, so let's capitalize onthe strengths.
(21:46):
Let's minimize weaknesses oropportunities that they may or
may not hurt themselves.
So is there a predictability?
What side of the bed do theysleep on?
What signals can we have in theroom?
There's so many things.
We could go down the list, butlook at the environment and see
how do they even move in thespace would probably be my first
.
One is just to observe them.
That's great.
Edith Gendron (22:06):
Some of the things we have to keep an eye on
, too, are things we here mighttake for granted, things like
the pretty bar of soap thatlooks like I don't know an ice
cream cone or a flower orsomething other than what it is.
So sometimes when we think ofsafety, we have to go a little
bit beyond the get rid of therug Right.
Bobbi Barber (22:24):
Right, yeah, I was just thinking like a tripping
hazard if they shuffled theirfeet.
Robin Rountree (22:28):
Yeah, yeah, yeah , yeah, absolutely, absolutely.
Edith Gendron (22:30):
That may be Type of shoes right the type of
slippers.
Robin Rountree (22:33):
Yeah, and it is hard to have that non-emotional
judgment, oh for sure.
So that may be to tell yourdoctor.
Could you give me a littlephysical therapy so I could get
the safety assessment?
Or just I need a safetyassessment.
Do you know where I could getone?
(22:53):
Because it is so hard to seewhen it's your person to see
that decline in real time.
Bobbi Barber (22:56):
Yes, you have the initial emotional response which
is oh, my goodness, this is toomuch, this is so sad.
There's big emotions as anadult that you have looking at
your mom, your dad or yourperson.
Right, that can be devastating.
And if it goes unchecked, youjust go into the motions of oh,
(23:18):
I'm going to care, I'm going tocare for them and take care of
them as doing the things.
But when we ignore thatemotional residue that we bring,
that's a third element in thatrelationship that you may not be
prepared for.
Edith Gendron (23:33):
Yeah, you have to name it and you have to work
through it.
One of the emotions thathappens so often, that people
disregard, is grief.
Bobbi Barber (23:41):
It's an anticipatory type of grief.
There's 13 types of grief.
Did you know that?
Edith Gendron (23:48):
Yeah, there's a lot of grief.
There's a lot of grief, thereis a lot.
One of the issues with ourworld is that you can't lay the
grief down, you can't set itaside.
It continues.
It's like an aggregate it growsand it stays with you.
And you know, nobody sends youa casserole or some flowers.
It's sticky.
Bobbi Barber (24:02):
It's a sticky area .
Edith Gendron (24:03):
Completely different form of grieving than
any other type.
Bobbi Barber (24:07):
It's stressful.
It's a stressful type of grief.
And then you add on to that ifyou have children at home or
other things that you areresponsible to and for, and then
if there's other siblings orissues or another parent.
Edith Gendron (24:20):
Or you're not well yourself.
Bobbi Barber (24:22):
Oh my gosh, the layers that can compound
something.
Edith Gendron (24:27):
One of the things we teach our families and we
teach our primary carephysicians that work with us, is
that it's not just the personwith the diagnosis.
The whole family, everyonethat's involved in that intimate
circle, is involved in thisillness.
That is part of the illness.
They need to be cared for andtreated as well.
Bobbi Barber (24:45):
I know, and that's when I first started.
When I first contacted you, itwas flooded Just information.
Where do I start?
Where do I begin?
How is this happening to me?
What am I going to do?
Where do I start?
So I had no grounding and itwas just pacing.
Edith Gendron (25:05):
Yeah, I don't want this.
I don't want this to behappening.
Bobbi Barber (25:08):
Oh, I don't want this, I want this in her life.
Yeah, that devastation of thisis my mom.
What's going on?
Robin Rountree (25:16):
Yes.
Bobbi Barber (25:17):
It was hard.
Robin Rountree (25:18):
I'm getting all sorts of chills over here, but
that's why we are here, theAlzheimer's and Dementia
Resource Center, and I got togive the plug.
If you would like to support usin doing the work that we do,
our website is adrccaresorg.
Slash donate.
We would appreciate yoursupport.
Bobbi, I know when we talkedabout you coming on this podcast
(25:39):
, you thought you may have abook in you and I got to say I
think you may have a book in you.
Bobbi Barber (25:44):
We discussed a little bit of this, because
there is the ABA part, which isthe environment, and then
there's the emotional stuff,which is the LMHC stuff, that it
will never or cease to surpriseme, the amount of layers as you
process this part, sometimes,of our lives, this part of the
(26:04):
story that we were never, like,prepared for.
Edith Gendron (26:07):
Nobody wakes up or grows up as a little kid and
says, gee, I want to be a carepartner to my mom when she has
Alzheimer's disease someday.
Bobbi Barber (26:14):
And it's so different to look at your
parents that way.
It challenges you on everylevel.
Edith Gendron (26:22):
Yep, one of the things that I think we need to
mention, because we are talkingabout responses to the
environment, is with progressionthe environment has a greater
potential to be a biggerinfluence on a person.
Others do too, here at thistable.
If somebody encourages us toeat a donut, we can say, gee, no
thanks, it's not good for myhealth.
(26:42):
We understand With progressionthat ability to weigh good
choices goes away, and so theenvironment, other people who
are part of the environment.
They can have a stronger andstronger influence on the
person's response to thatstimuli.
So it gets tricky.
Robin Rountree (27:00):
Yeah, and it just the how you teach us.
Bobbi Barber (27:03):
You know, your vision changes and so not to
come up from behind becauseyou're going to scare the crap
out of them, right?
Robin Rountree (27:08):
Right, oh, so much to uncover.
Bobbi Barber (27:10):
Well, it is Also how, at a senior's age, how do
they organize information intheir mind?
Robin Rountree (27:17):
Right.
Bobbi Barber (27:17):
So they are also absorbing everything that's
taking place.
Sensory overload is a reallybig thing, like your nervous
system just gets flooded.
And then how do we think, howdo we behave?
How do we talk?
How do they not talk?
They don't even.
Sometimes you can't evenprocess words right.
And then if there's anyregressions in development or
(27:39):
old things bust through andemotions come out, memories
emerge or past life experiencesthat you didn't even know
existed.
So many things right thatyou're just like wait what?
Edith Gendron (27:51):
One of the things we remind families of is to be
very cautious around the majorholidays, because you know, when
you take everything down andthen put up all that Christmas
stuff, for example, it's a wholenew environment and you got
flashing lights and music andwow, yes, tell our listeners one
more time what ABA is.
Bobbi Barber (28:10):
Applied Behavior Analysis.
Robin Rountree (28:12):
Very nice, and so you are the founder and CEO
of Mindful Counseling Florida.
If someone wants to reach outto you, is there a phone number
or website?
Bobbi Barber (28:21):
Sure, mindfulcounselingflcom or at
Gmail, it's the exact same thing.
I can be reached at407-796-1580.
Robin Rountree (28:31):
We'll put that in the show notes in case you're
looking for that.
Thank you so much for using ourservices and then for giving
back and letting us know how youdid it a little bit better so
much.
Bobbi Barber (28:41):
I feel like you're a great resource.
It was so helpful and it reallydid pivot us and better us,
meaning my family in directionsthat we felt were very useful,
and to feel like you have powerwhen there's a powerless
situation is just beyond.
It's huge, yeah, yeah.
Robin Rountree (29:04):
Please make sure to subscribe to our podcast
Informed Aging.
Tell your family and friendsabout us.
You can find us at facebookcomslash informed aging.
Today's episode was recorded atADRC's podcast studio.
That's it for now.
We are looking forward to ournext visit.
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