November 29, 2024 • 50 mins
Today we discuss the circle of life and explore the emotional and delicate balance of caregiving. For most of us we will be caregivers to our spouse, parents or even our children. And at some point, our own children will be our caregivers. We are lucky to have two guests. The first is Dana Eble, who has been involved in Alzheimer’s disease philanthropy for more than a decade, which led her to being one of the first employees at Alzheimer’s Caregivers Network in 2021. Dana works to educate and equip caregivers with the knowledge and resources they need to excel in their roles while avoiding burnout.
Joining Dana is Jessica Smith. Dana shares her own story of her mother being diagnosed with Alzheimer’s disease the age of 61. She remembers wanting to hide. She felt shame and fear as her family’s world and daily realities changed.
You'll discover how mindfulness became Jessica's anchor in managing her responsibilities and learn about the essential resource, "Navigating Alzheimer's Disease: A Map for Caregivers," available as a free PDF for anyone on a similar path.
We dive into the tough conversations that many of us avoid, yet are necessary when dealing with dementia—like preparing for end-of-life discussions and challenging the often grim societal perceptions around the disease.
Thank you to Connie Gorant Fisher, our audio engineer.
Remember to follow us on Facebook and Instagram. Visit our website at biteyourtonguepodcast.com and select SUPPORT US. You can buy a "virtual" cup of coffee for only $5.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
And that is a huge thing about dementia.
So many people ask me does yourmother know who you are?
Well, I could care less.
Quite frankly, I really don'tcare, because if I'm going to
hang up my own happiness on mymother knowing my name
throughout this journey, I amsetting myself up for
disappointment.
So why do I care if she saysthe letters that make up the
(00:24):
name Jessica, when all I want isto know my mom feels happy and
loved and supported?
Jessica is just one of the manyroles I play.
Speaker 2 (00:38):
Hello everyone.
Welcome to Bite your Tongue thepodcast.
I'm Denise and.
Speaker 3 (00:43):
I'm Kirsten, and we hope you will join us as we
explore the ins and outs ofbuilding healthy relationships
with our adult children.
Speaker 2 (00:50):
Together.
We'll speak with experts, shareheartfelt stories and get
timely advice addressing topicsthat matter most to you.
Speaker 3 (00:58):
Get ready to dive deep and learn to build and
nurture deep connections withour adult children and, of
course, when to bite our tongues.
So let's get started.
Speaker 4 (01:09):
Hello everyone and welcome to another episode of
Bite your Tongue, the podcast.
I'm Denise and I'm here with myco-host, kirsten.
Today's episode is a veryspecial one and it's hard to
believe it's our second episodeof season four.
The episode is about caregiving.
We've wanted to do an episodeon caregiving because so many
(01:29):
parents of young adults arecaught in the middle of building
relationships with their adultchildren and even grandchildren,
and still caregiving for theirown parents.
Also, for all of us at this age, it's time to start thinking
about our own long-term care andtalking about this to our adult
children.
So we're thrilled to welcometwo guests today Jessica Smith
(01:53):
and Dana Ebel.
Jessica's mother was diagnosedwith Alzheimer's disease in 2014
at the early age of 61.
Jessica remembers wanting tohide.
She felt shame and fear as herfamily's world and daily
realities changed immediatelyJoining Jessica is Dana, who was
(02:15):
one of the first employees atthe Alzheimer's Caregivers
Network in 2021.
Finally, we're going to talkabout a new book put out by the
Alzheimer's Caregivers Network.
It's called NavigatingAlzheimer's Disease a Map for
Caregivers and for thoselistening.
If you'll send us an email tobiteyourtonguepodcast at
(02:37):
gmailcom and give us an idea foran episode or give us a review,
you'll have a chance to win ahard copy of the book, so don't
forget to email us.
Speaker 3 (02:49):
I love this book.
Denise, I think I called youright away after I read it.
I'm exactly in this spot rightnow where I am caring for my
elderly parents and I have adultchildren who are still
navigating where they're goingto land.
So the resources in this book Iwas taking like rapid notes as
I was going through it.
I've shared a lot of it alreadywith friends because so many of
(03:11):
us are in this position, so weare really anxious to get
started with this episode.
Welcome, jessica and Dana, sohappy to have you with us today.
Is there anything that wemissed that you would like to
share with our audience?
Speaker 5 (03:25):
The book is available as a free PDF on our website at
alzheimerscaregiversorg.
So if you want a physical copy,you can win one by writing in,
or you can just download a freeversion as a PDF.
Speaker 4 (03:38):
Well, great, anything you want to add, jessica,
before I ask you a question, oh,no, go for it.
Speaker 1 (03:50):
I mean, the only thing I guess I could add is
that a huge part of my journeyso far with my mom that has gave
me help throughout it would bemy mindfulness practice which I
want to touch on today.
Speaker 4 (03:54):
Okay, that's great.
Jessica, I feel bad asking thisIs your mom still alive?
She is.
Yeah, don't feel bad, let'scelebrate that.
Yeah.
Speaker 1 (04:06):
No, that's a great question.
I love it.
I love it.
My mom is still alive.
Just to paint a quick picture,I actually am a long distance
caregiver for my mother, veryinvolved.
Just because we're longdistance doesn't mean it's not
on my mind 24-7.
She is actually in Florida andI reside in North Carolina, so I
spend a lot of time down there.
She spends a lot of time here.
Speaker 4 (04:25):
There's a lot of back and forth and a ton of video
calls, oh, I bet.
So one thing that I want tounderstand is what's the
difference between Alzheimer'sand dementia?
We hear this all the time.
Now I'm 67.
I'm sure I've got a littledementia.
I'm, I've, or, or you know thisthing they call senior.
What's it called?
I had a senior moment.
You can't remember someone'sname, you can't remember an
address.
Oh my gosh, I've known my phonenumber my whole life and now I
(04:45):
can't remember it.
I don't think I haveAlzheimer's, but what's the
difference between Alzheimer'sand dementia or senior moments?
Speaker 5 (04:52):
Yeah, so Alzheimer's is a form of dementia.
So if you have Alzheimer'sdisease, you have dementia.
But if you have dementia youdon't necessarily have
Alzheimer's disease.
There's a lot of differentforms of dementia out there.
How do they diagnose it?
It can be kind of complicatedto get a diagnosis.
It can take a really long time.
Jess, is that something youwant to go into with your mom's
(05:13):
diagnosis?
Speaker 1 (05:14):
Sure.
So for my mom.
She just did a simple test atthe neurologist that it was just
some questions that were asked.
She had to draw a clock.
It's a very standard type test.
But something I do want to touchupon before we go on is Denise
you kind of referred to it asyou know you potentially having
dementia or a mild case ofdementia.
So I just want to squash a myththat dementia is not a normal
(05:37):
part of aging, and this issomething that needs to be
really hammered home, not justfor those of us outside of the
healthcare profession, but thereare a lot of providers within
the healthcare system who alsoassume that this is a normal
part of aging, and it truly isnot.
Our brain is meant to agehealthfully, as into our elder
(05:58):
years.
So something like maybe havinga little forgetfulness here and
there, that is a normal part ofaging.
I mean, just like how you can'trun a marathon the way you once
did, that is a normal part ofaging.
I mean, just like how you can'trun a marathon the way you once
did, right, because yourmuscles are just not the same.
It's the exact same thing withyour brain, I think.
I just want to point out.
Let's not take it easy on howwe use that word.
Not that we're doing somethingwrong by saying it, but by just
(06:20):
recognizing that there isdementia and then there's just
normal brain aging.
You know you're going to forgetsomething here and here and
again.
You're going to walk into aroom every once in a while and
forget why you walked into thatroom.
There's also much, muchresearch coming out now about
the female body and menopauseand how that affects the brain
(06:42):
as well.
Those hormone drops aredifferent, so let's just all
know that just because we'regonna go into our 70s, 80s, 90s,
doesn't mean you're gonna getdementia.
Speaker 4 (06:51):
I wanna get more into what we're gonna talk about
today with our adult childrenand how to prepare them and also
the sandwich generation.
But when do you start gettingconcerned?
When other people tell you whendo you know whether someone
should go get checked or not getchecked?
Or I said to someone threeweeks after Thanksgiving where
did you have Thanksgiving?
I don't know where we hadThanksgiving.
That really concerned me.
Speaker 1 (07:14):
Yeah, I think it really.
Just like every individual isunique, everyone living with a
brain is unique, and how thatbrain ages is unique, right, so
our approach also needs to bevery unique to people we may be
close to in life and maybe havea concern with.
For my mom and I'll speak tothat there were pretty
significant changes not havingto do with memory loss, believe
(07:36):
it or not.
It was more personality typechanges where we were noticing a
lack of organizational skills.
We were noticing where therewas very strong organizational
skills.
My mother Patty she is she hadher linen closet.
She had it organized by holiday, you know, and she would use
some towels and then the nextholiday would be on top.
(07:58):
I mean, when I saw that closetstart to go awry, that's when I
knew something was up.
Interesting.
Yeah, yeah.
So there are a lot of symptomsthat may you know, may show that
aren't necessarily memory loss.
And I think, in terms of anapproach and like how do you
know, I think it's really up toyou as a friend or you as a
(08:19):
family member to say I'mnoticing something here, can we
talk about it and really openingthat door to having a two-way
conversation.
But I think, with a lot ofpeople and my mom, it was very
difficult for my mom to hearthose concerns.
Speaker 4 (08:36):
That's what I was going to ask you.
Share your journey a little bit.
Go ahead, Jessica, and tell ushow you approach this and how
you've dealt with it.
Speaker 1 (08:43):
Sure, I would say the beginning was probably one of
the most difficult parts of thisjourney in terms of getting my
mom on board with going to aneurologist.
Just that very first step wasvery difficult for my very
independent and sassy mom.
I mean, she just did not wantto do that.
To my mom's credit, she had agreat way of hiding some of
these symptoms.
(09:03):
You know she played them offvery well and you know I have
learned years later that thereis actually a symptom of
dementia that does not allow theperson to have that same level
of self-awareness that they oncedid.
So there could be my momactually with a healthy brain
refuting our claims thatsomething's going on.
(09:25):
But there can also be thissymptom.
Dana, what's it called?
Agnosia?
Is that what it's called?
Speaker 5 (09:32):
That's ringing a bell .
Speaker 1 (09:33):
Yeah, I believe it's agnosia.
Anyway, that permits my motherfrom even or someone living with
dementia from knowing thatsomething is even going on you
know that the forgetfulness, iseven there so quickly.
We had a few familyinterventions with my mom, the
entire family, my stepdad and mydad included my sisters, and it
(09:53):
took probably three to four ofthose many, many phone calls for
her to finally go to theneurologist and get a diagnosis.
Speaker 4 (10:02):
And did someone go?
Speaker 1 (10:02):
with her, I assume.
Yeah, my stepdad went with herand as soon as they got out of
that appointment, my mom told mystepdad don't you dare tell
anyone.
You know, I do a lot of puttingmyself in my mom's shoes
through this journey and Iencourage anyone who knows
someone that's living withdementia to do the same thing,
because we, the people with thehealthy brains, we always think
(10:23):
we know what's best, but, like,let's take a moment and just
reflect on what this experiencemust be like for them.
I can understand my mom'shesitation, even if she was
aware, to buy into this, becausefor a lot of people they
immediately think well, dementiadiagnosis means the end, right,
because as society we have thishuge tragedy narrative that
(10:45):
it's all doom and gloom once youget a dementia diagnosis, which
could not be further from thetruth.
Speaker 3 (10:50):
But we can talk about that later, your mom was
relatively young and so I canimagine.
Speaker 4 (10:54):
I can imagine why she wouldn't want to initially.
Speaker 3 (10:59):
You know, it's like she has to take her own breath
first to be able to sort of wrapher brain around, so to speak.
What was next before she'd becomfortable talking to all of
you?
Speaker 4 (11:11):
Absolutely.
I'm older than your mother wasand I think if it happened to me
now, I would suddenly feel dumb, scared to say anything, scared
to go anywhere.
I mean, how do you get pastthat by?
Speaker 1 (11:23):
conversations like these, by talking, by having
this conversation on morepodcasts, by chatting with our
friends and family.
What would it be like if I gotthis certain diagnosis?
I think as a society and thisis where some of my initial
shame came in as a society, wedon't talk enough about things
like disease, illness, dying.
(11:44):
Society, we don't talk enoughabout things like disease,
illness, dying, so that whenthat time actually comes, these
big life moments actually cometo us, we don't want to talk, we
shrink.
You know why we shrink?
Because it's brand new, it's anew topic to us.
So I feel like if we had beenin a position as a family, where
my mom was more open andtalking about things like this,
like what will happen when shegets older, no matter what the
(12:06):
disease is or not, you know, Ithink she would have been a
little bit more open to havingthose conversations at the time
of diagnosis.
Because I'm that way Ifsomething were to happen to me.
I'll talk to anybody about it.
Speaker 4 (12:19):
You know I would talk to my family.
I talked to my kids a lot aboutdeath and dying and they always
say every time they live out ofstate, when they get together,
the first thing I say is now,mom, why, every time we get
together, the first thing youwant to talk about because I
want to get it out of the way.
Now, this is going to be thenext conversation I'm going to
have with them, because I'vemore talked about where all my
things are, what I want, how toaccess this, who to contact
(12:42):
about this.
So how do I approach somethinglike this?
Because everyone wants toignore.
Oh, mom, it's not going tohappen.
Speaker 5 (12:49):
Something in my family that I'm like, eternally
grateful for is my grandparentswere so prepared and they had
everything all their wishes, alltheir paperwork, everything in
a massive binder.
So it was all written down, andthey had multiple conversations
with their children and withthe grandchildren about their
wishes and their plans.
But having a solid thing toreference and flip through it
(13:14):
just made everybody's lives somuch easier.
And it's also it's not a onetime conversation.
It's going to be manyconversations that evolve over a
lot of time conversations thatevolve over a lot of time.
Speaker 4 (13:26):
So how do we approach the whole idea of Alzheimer's
or dementia?
So what do I say?
What do I do?
I guess start with that onequestion.
You wrote this question,Kirsten, about caregiving and
that we feel responsible for ourparents.
Are there ways to prepare forthis that make their obligations
less stressful?
Speaker 1 (13:40):
I mean, I think so much about this just relies on
us having this open dialogue,and that takes work internally.
You know, I think I know thismight sound a little woo woo,
but the best place to start allof these things is with yourself
and in your own mind.
There's so much going on in ourminds, 24, every waking hour,
(14:06):
this nonstop chatter that we allhave.
It's the critic, it's the judge, it's our favorite cheerleader,
all of these things.
But this is always pepperingevery single experience that we
have.
So I think a place to start isinternally, and what that means
is to reflect on our owneventual death, which will
literally happen to every singleone of us, but to frame it in a
(14:29):
way like of more of excitementrather than doom.
We are all born and we all die,but when in that birth we really
have little involvement overhow things go, who's in the room
, what music mom has playingduring that time, all of those
things and we arrive with ourdeath.
It is this sacred time of ourlives that we actually get a say
(14:53):
over, that we actually can plan, and I think getting
comfortable with that starts bygetting to know yourself a
little bit better, getting toknow that nonstop chatter in
your mind.
And what is it saying abouteverything?
What is it saying about things?
Because once we start to ponderour own death and our own end
(15:13):
of life, we start living in awhole different way, because we
realize we have a finite amountof times with our family, we
have a finite amount of showers,we have a finite amount of
Mondays, believe it or not, andone day, on our deathbed, when
you know, 20 years earlier, wemay say, oh Monday, we may be
(15:33):
thinking I wish I had anotherMonday.
So these things happen,starting with our mind and
within ourselves.
Speaker 3 (15:41):
So I think a great place to start is just to each
of for each Well, I think thatthat same idea you know, that's
basically taking care of myselffirst goes along with even in
the book, where it talks aboutputting on your own air mask
first.
So the care, the caregiver, isgoing through that same mental
(16:05):
process and needs to go throughthat same mental process that
we're asking of ourselves.
Right, but that was, that'swhat I use, that phrase all the
time Put on your own air maskfirst, because I'm worthless to
anybody if I'm not OK.
And and for the person that'snow being diagnosed, same thing.
Yes.
Right, get your head around this, get comfortable with this and
(16:26):
I don't know for me if theconversations leading up to it
ever really fully prepare, butjust knowing that you've set it
up in a way like yourgrandparents, with the binder,
that's invaluable.
I just went through this with afamily member that passed and he
had three large binders thatcovered every possible scenario
(16:49):
every what, if, every when itwas awesome and it really took a
lot of the burden off of therest of us.
So I think there's a lot ofthings we can do to prepare that
I love.
The other thing that I thinktoo, with Alzheimer's again in
the book that we talk about istheir behavior when they've been
diagnosed is sometimes out oftheir control, and wrapping our
(17:12):
heads around that as well, Ithink, is huge, hugely important
.
Speaker 5 (17:17):
There's more research coming out that shows that your
behavior can be affected up tolike 15 or 20 years before
you're even diagnosed.
I mean, these are things.
It's a disease that makeschanges in your brain so far
before you're diagnosedofficially.
And I was just talking withsomebody who found out that
their father was having anaffair on their mom for years
(17:40):
and he was just diagnosed withdementia.
And then we're having a reallybig conversation about like,
could that have been thedementia?
We don't know for sure, butit's just a very painful thing
to have to think about and tohave to analyze after you have
the diagnosis If your partner oryour loved one has been
behaving erratically or makingchoices that don't seem like
(18:00):
them.
Speaker 1 (18:01):
Just to speak to that real quick.
I feel very strongly that muchof my mom's personality has
remained intact through thisjourney, and that's why I think
it's another reason why I thinkit's important to start having
these conversations now, becauseI think that years, even
decades, before a diagnosis, wekind of need to get ourselves
(18:22):
right, because we may not haveas much control over those
habitual patterns that wedisplay day in and day out.
You know, for instance, my momnever, or never, accepted help.
I can trace this back to beinga teenager and me vacuuming, and
her saying you're not doing itright, just let me do it.
(18:43):
Or my stepdad offering to dosomething at the house changing
a doorknob and my mom saying no,you're not going to do it right
, I'm just going to do it.
Well, that inability to accepthelp has now moved into her
inability to accept help as I'mdressing her because she is
unable to dress herself due todementia, and so I think it's
(19:04):
important to realize like wetake these same traits with us.
It doesn't just necessarilycompletely go away Now.
There are certain types ofdementia that may affect the
personality more strongly thanothers, but those habitual
patterns, those ways of being,they don't just go away.
And so you know, I have beentraining myself to accept help
(19:28):
when my husband offers help,instead of my natural
inclination to say no, no, no,I've got this, to say yo, yeah,
this would be great.
Yeah, ken, please help me out.
It feels weird at first, itdoesn't feel natural, but I'm
basically trying to set newneural pathways so that when I,
if I'm in my eighties and I dohave a cognitive impairment,
(19:48):
that will be the naturalinclination of my mind to accept
help rather than refute it.
Speaker 4 (19:56):
Okay, so all of this is all the stuff's going through
my head.
I'm your mother, Jessica.
I'm just going to tell younobody helps me.
I'm almost embarrassed whenpeople try to help me and mine
isn't.
I can do it better.
It's I can do it faster.
I never could do it better.
It's just I can't wait for youto get it done.
I never had parents withAlzheimer's, but I had parents
that were sick, died in theirnineties, long distance.
I felt compelled to take careof them.
(20:17):
I love them.
I don't care.
If you told me, put your ownmask on first, I would have been
.
I want to do this for them.
When you say in your book thatsay things like take care of
yourself, get a massage, goexercise, that was last on my
list, but I also was youngenough that I could fly back and
forth.
I don't want that for mychildren, so I don't want to
(20:39):
change my neuropathways to wanthelp.
I think that you neverunderstand a situation until
you're in it.
When my mother finally died,she was DNR and I'll never
forget this.
They went in to revive her andI had to say stop, that's what
she wants.
But to say that was the hardestthing that I've ever done in my
whole life and I think peopledon't realize it till they're
(21:01):
there.
I think I know what I'm gonnado I say listen, if I get
Alzheimer's, put me away in thecheapest place you can find,
don't come visit me.
And I don't know whether I'mreally gonna feel that way.
What if I don't even know mykids?
Do I care if they come andvisit?
Speaker 5 (21:14):
It's so interesting that you're saying that you
don't want to be a burden toyour kids, but then also, right
before that, you were sayinglike you did all this stuff for
your parents because you lovethem so much.
So your kids are going to dothat for you.
They're going to do things.
So I think that the best thingyou can do for them in the long
term is be proactive abouttaking care of your health.
(21:35):
Be proactive about going to thedoctor and not making them do
multiple interventions for you,making those plans in place to
make their life easier, so thatway, if and when you get sick,
there's not going to be anyguesswork on there and they're
not going to be like what wouldmom want.
They're going to know becauseyou've already had multiple
conversations to spell it out.
Speaker 3 (21:56):
Well, I have a question on this.
So part of this for me being inthe middle of this is that I've
got a couple of kids that livenear me and my parents live near
me.
So how do you lessen that timecommitment?
To carve out the time to eatwell, exercise, get enough,
sleep, not stress?
(22:16):
It's not as easy to do whenyou're in the middle of it and
because I'm right here, I'm theone that gets all of those calls
, all of those emergencies, allof those.
Can you run here?
Can you run there?
Because when you are in themiddle of it, you're in the
middle of it.
There's not really time forbreathing.
I don't know if there ifthere's any words of wisdom that
(22:39):
we can give to our listenersabout that time commitment piece
.
How do you carve it out?
Speaker 5 (22:46):
Yeah, it's very hard when you're in it and, jess, I
would love to hear about, like,the things that you've done in
your real life.
But as for the book, we reallytried to hit home with that
because we know it's anaspirational goal.
So if we talk about, like,doing five different things for
yourself, and we know a readeris able to implement one of them
into their life, that's a win.
Not every day is going to beperfect, not every day is going
(23:07):
to be doing something nice foryourself, but if that is, at
least we can take the guilt awayfrom that and so when they have
that moment they don't feel badabout it.
That's a win.
Speaker 1 (23:18):
Yeah, and I think part of self-care is boundaries,
and I know it can feelimpossible.
I certainly have gone back andforth with overextending myself
and having to pull back due tojust being completely
overwhelmed with all of the helpthat I'm providing.
But we have to have some sortof boundary because, at the end
(23:38):
of the day, it is our parents'life, it is our kids' life and
it is our lives.
They are all separate Really atthe end of the day.
They are separate, even thoughit does not feel like it, and
every fiber of your being can betelling you differently.
Every fiber of your being canbe telling you differently.
But I know when, for mysituation, when I overextend
(23:58):
myself, I often ponder would mymom want me to be in this state
of stress?
I know she would not, and so itis that it's almost like she's
giving me advice without givingme advice and it's so beautiful
and I'll just pull back veryslightly.
And I think, in terms of, likethe time commitment and the time
involved, yeah, like whenyou're in it, like you don't
(24:19):
have time to go get a massageyou kidding me Like you barely
have time to eat, because I havenoticed, when I am full-time
caregiving for my mom, all thelittle ways I remove some
healthy habits.
I'm a very healthy person.
I prioritize good food,movement, meditation, all of
those things into my life.
And I noticed where I kind ofcut corners.
(24:41):
When I'm full time with my mom,for months at a time, I'll be
with her and I won't go on aslong of a walk or I won't do
this or I won't do that.
My lunch is really quickbecause I'm more worried about
her lunch, things like that.
But I still, within that, Istill prioritize five minutes of
sitting quietly in the morning.
I still prioritize some sort ofmovement or walk while my
(25:03):
mother is still sleeping.
So, even though it may feelimpossible, you know, I'm sure
we can all find something fiveminutes, two minutes or some,
some way to continue to care forourselves, because it being
impossible is a script in ourmind.
Speaker 3 (25:19):
Right, right, well, and it leads kind of into my
next question and Denise and Iwere both control freaks, but
about different things, andrelatable, and I think that
understanding this idea that weneed a team to do this and not
just our doctors and the otherpeople that might surround
nurses, whatever that might besurrounding us, but how do we
(25:39):
engage for me, my siblings andmy children in a way that
doesn't interrupt their lives,particularly because they don't
live in the same state?
So I am, really I'm what do youcall that?
The first responder, so tospeak.
I'm what do you call that, thefirst responder, so to speak?
Right, how do I engage them ina way that I'm honoring their
lives and the boundaries thatthey have, but also getting the
(26:01):
support that I need?
Speaker 1 (26:03):
Can I ask why you don't want to disrupt them, like
why you use that word?
Speaker 3 (26:07):
So maybe that's the right word.
It's just that I think it'smuch.
They're in different stages oftheir lives.
They're in different stages oftheir lives and so, first for my
kids, they do what they canwhen they can.
I don't want to ask them formore, because I want them to be
on that journey.
Right that makes sense and mysiblings same kind of thing.
Their lives are in differentplaces than where mine is, so I
(26:31):
am the one that has because Ilive here.
It's easier for me to drive the20 minutes over than it is for
my sister to get on a plane.
She still has kids in highschool and to be here it's much
more difficult but allows themto participate in a way that is
(26:53):
helpful for me as much as it isfulfilling for them, because I
know they want to help.
Speaker 1 (27:02):
I'm glad you have siblings that want to help.
That alone is a huge deal, Iknow.
For me, something important hasbeen well, two things Naming
how I need help.
As the long distance caregiver,I am the first responder and I
(27:28):
have a sister who lives about 40minutes away from my family,
from my mom and my stepdad.
I am kind of in an oppositescenario than you, and the
reason this has played out likethis in our lives is because I
have the emotional wherewithalto be there for my mom and and
my sisters.
(27:48):
I'm the oldest of three girls.
They sort of had a differentversion of my mom.
They were living at home whenmy parents went through a
divorce and my stepdad moved in,so they were there while I was
in college and forming afriendship with my mom.
So we had just a differentrelational aspect with my mom.
That provides me with moremotivation to show up and
(28:09):
provides them with a little bitless, and for that reason I say
what I need, but I don't expectthem to always show up in the
way that I.
That may be best for me or mymom, but I do have people in my
life that do show up for me andthat are rocks for me as a
caregiver, because that is likesuch a huge aspect of this is
having a caregiver for thecaregiver Right.
(28:32):
I mean, Kirsten, I'm sure inyour life you probably have
someone that is supporting youthat you can go to, maybe for a
hug or a phone call when youjust want to like melt.
Speaker 5 (28:43):
Oh, absolutely, absolutely.
Speaker 1 (28:44):
And I do too.
I have some really phenomenalbest friends.
I have my dad, I have myhusband, who is my rock.
These are the people that aresupporting me while I support my
mom and my stepdad, jessicasomething you said changed my
life right now.
Speaker 4 (28:59):
Okay, when I talked about how to prepare my kids, or
not wanting them to do it, yousaid something about when you're
really stressed out.
You think, would my mom want meto be that stressed out?
I think that's a goodconversation for me to have with
my children because, you'reright, they might feel like they
need to be there in some way,but what I don't want is them to
(29:21):
feel like they're way you knowthey have, if they have
something in their life that'sreally important, or stressing
them out.
I don't want to be the otherpiece.
Does that make sense?
And I'm going to ask them toask that question to themselves
and give them the permission toask that question.
That was really the mostvaluable piece of advice right
(29:42):
now for me, because, instead oftelling me to put me in the
cheapest place, I can say justask yourself is this really
stressing you out?
Speaker 1 (29:49):
Well, Denise, because , as it was an act of love for
you to give care to your parents, some of your children may feel
that way too.
Some of them may not.
It may not be in theirwheelhouse to show up in the
same way you did, but by denyingyour kids the ability to care
for you, you're kind of likedenying the love that they want
to share with you.
And, yeah, if you, if you couldjust have this conversation and
(30:11):
get to the crux of why you knowyou're feeling this way and I
think you just did, that can bea huge opening to even more
conversation and what thatreally means and what that's
that looks like.
Because, denise, do you reallywant to be just like put away
and wherever, whatever home?
Speaker 4 (30:28):
It depends what my memory is like.
If I'm really sick, I wouldlike someone to make sure I'm
getting the right care, orwhatever, but I don't understand
dementia and Alzheimer's, youguys.
So I don't know.
Will I know where I am?
Will I care whether I'm welltaken?
Speaker 1 (30:43):
care of.
You will know if you're takencare of.
You will know if you're takencare of.
You will know if you are loved.
You will continue to experiencethe range of emotion and, I
think, the deepest range ofemotion, when we get down to it.
You're going to still noticelove and compassion.
There may be a time when youcannot remember a child's name,
(31:04):
but who cares if you know youfeel safe and loved around that
child?
And that is a huge thing aboutdementia.
So many people ask me does yourmother know who you are?
Well, I could care less.
Quite frankly, I really don'tcare, because if I'm going to
hang up my own happiness on mymother knowing my name
throughout this journey, I amsetting myself up for
(31:25):
disappointment.
So why do I care if she saysthe letters that make up the
name Jessica, when all I want isto know my mom feels happy and
loved and supported, becausetruly, jessica is just one of
the many roles I play.
It's not who I am.
A name is not any of us.
We could all have a differentname right now and still be the
(31:47):
same being.
Could we agree to that?
So why does it matter?
With dementia Such a, you know,frustrating thing.
It doesn't matter.
What matters is that our personis loved and supported and feel
safe.
Speaker 4 (31:58):
I think about, wasn't it?
Justice O'Connor's husband thatwas diagnosed with Alzheimer's,
went into a facility, fell inlove with another woman.
She was really happy for him.
How do you continue to love andcare when the relationship is
so different?
You don't have the same.
Well, I'm going to give you anexample, and I actually asked
(32:21):
this.
I have a very dear friend.
I don't know whether it'sAlzheimer's or dementia.
I have a very dear friend.
I don't know whether it'sAlzheimer's or dementia.
I think she knows who I am buthas no idea how she knows me.
I struggle with what to talk toher about.
I love her because she was mymentor through life.
She's given me so much.
I try to go visit her and Iwant to spend a couple hours
with her, but I don't know whatto do.
Speaker 1 (32:43):
I will tell you that curiosity is your best friend.
You just need to be there and,like the thing is is like we
worry, like what?
What can we talk about?
What can we say?
Well, when you're just thereand you're fully there, with
your person and not in your mind, worrying about what to say
next or what to do, you have amuch better chance of going with
(33:03):
the flow, whatever that flowmeans.
I can't even give you, I can'teven tell you what exactly to
talk about, because things willnaturally arise with your
presence in the scenario.
Speaker 4 (33:14):
So now, when she says to me I have all these projects
going on.
You can't imagine how big myteam is.
At first I was saying to myfriend you're not working right
now.
Then I started saying tell meabout your team.
I just decided to go withwhatever you figured it out,
that's the golden ticket, that'sit.
Speaker 1 (33:30):
It's to match a mood, just match the mood.
This is also in the same veinas when someone living with
dementia is upset oh so-and-so,stole my whatever, stole my this
, stole my this.
You know, they moved it, theytook it from me.
Okay, so you have two optionsthere.
You can say no, no, patty, thatdid not happen, you are wrong.
(33:53):
Or you can say I'm so sorry tohear that.
Let's take a look and see if wecan find those things.
Because, again, the personliving with dementia is still
feeling all the same range ofemotions.
They just want to be heard,they want to be understood.
Your friend just wants to.
(34:13):
They want to talk about theirteam, hear about that team.
You nailed it, denise beingable to switch and to know okay,
maybe she just wants to talkabout this and allow her to talk
about it.
What's the harm in that?
Speaker 4 (34:29):
Well, at the beginning you felt like you were
helping them by saying wealready did, that I did come
yesterday.
And then I realized, as she gotworse, that wasn't helping
anything.
Speaker 1 (34:40):
Right, and there is nuance there, for sure.
Yeah, you have to.
Speaker 4 (34:44):
It seems to me.
It took me time to realize thatI better just start agreeing.
Speaker 1 (34:49):
Yeah, I mean we're all human, we're all trying to
figure it out, and that's wherehaving grace and compassion for
yourself on this journey mattersa lot.
I look back on old videos, backto 2017, and you know I'm eye
rolling my mom some of thethings she says and I.
I'm kind of embarrassed by that, but at the same time, this was
all new to me too.
I I have never once read a bookon Alzheimer's.
(35:11):
The only book that I havethumbed through is Dana's book.
I have never read anythingabout this disease, it's true,
and it's just wild to me that Iwas able to intuitively come to
these conclusions throughout myjourney.
But I'm sub two.
None of us are perfect and I'msure I'll mess up, more mess up,
(35:32):
quote, unquote.
I guess we're not really messingup if we're trying.
Speaker 3 (35:35):
I think that's valid and I one of the first things
about the book and it's I thinkit's towards the beginning of
the book where it talks aboutgrieving.
And we're not just grieving,it's not just that you grieve
the loss of a person, but you'regrieving the loss of all the
change and it might be in orderto be this caregiver.
You're giving up your career,money, relationships, your own
(35:58):
independence to just take off ata moment's notice and travel
with your spouse or whoever.
So I love that part of the bookand I hope others will read
this and appreciate that we'remourning lots of different
aspects when our whether it'sour parents or anybody else when
that diagnosis hits, and togive ourselves the space and the
(36:22):
grace to really do thatmourning.
My question is how do you notget stuck in that grief and that
anger while you're also, at thesame time, having to be the
caregiver?
It's hard.
You don't have as much space.
Speaker 1 (36:37):
Realize that everything is temporary.
Speaker 5 (36:40):
Exactly that and just being mindful about your
situation and checking in withyour feelings and being open to
happiness and positive things.
And, like Jess said earlier,everybody thinks that this
diagnosis is like doom and gloomand the end of the world, but
there's still so much love andthere's so much happiness even
way into a diagnosis.
So just be kind to yourself.
Speaker 4 (37:03):
One of the things we haven't discussed and most of
our listeners are older and thisis another thing I think our
adult kids have to think about.
When you're a caregiver to aromantic partner, your husband
or your wife is diagnosed,you're fine.
Number one what role can ouradult children play in possibly
helping the other parent?
And number two, how do us, asthe spouse of the person that
(37:26):
might be diagnosed, deal withlosing our partner in many?
I mean, you don't lose them,but you lose them in many ways.
Speaker 1 (37:33):
Yeah, this is another one that I ponder a lot,
because I'm in such a wonderfulrelationship and I wonder what
it would be like if that dayever comes.
And what that makes me do isnot worry.
It just makes me be morepresent with him now, because
none of us know what's going tohappen.
We can all.
Something could happen tomorrowin a car, something could
(37:56):
happen walking.
We never know.
We set up these big things likeyou know.
How is it going to be 30 yearsfrom now?
Well, I don't know.
Let's just be here now and see,because I feel like otherwise
we're kind of wasting our timeand energy worrying about the
future.
But I am sure, when it comes toa spouse, that that change is
(38:17):
incredibly hard.
I'm watching my stepdad gothrough it with my mom right now
.
And to answer one of your other, your other question, how do we
support the other person inthat relationship?
I support my stepfather.
It's hard.
It's the other biggestchallenge for me of this, of
this entire puzzle, and that'sbecause he will also not accept
help.
So I think, before I can eventell you the ways that I help
(38:41):
him, I think it's just reallyimportant for all of us to get
into a mode of accepting help,because, I mean, we are all
going to need help one day,whether it be because of an
illness or because we're caringfor someone else.
But we need to just get betterat accepting help as a society.
Speaker 4 (38:59):
You know, you sort of said two different things.
So let's get prepared, butlet's live in the moment.
So you're right, you don't wantto think what's going to happen
in 30 years, but because I'mnow at an age where I'm
surrounded with people that arefacing some of these things my
husband and I always talk about,should this happen to you, or
this happened to me, what wouldyou want?
(39:20):
What would you?
want me to do that sort of thing.
I think it's because I lost myparents when I was younger and I
knew what needed to be done.
Does that make sense?
But I think, yes, you have tolive in the moment but at the
same time, prepare for thefuture.
Speaker 1 (39:33):
Absolutely.
Both can be true at the sametime.
But there is preparing andusing our mind logically to
prepare, and then there'soverthinking and over worrying.
That's when preparing gets outof balance right.
So so there is that that youknow duality there.
But one thing that you're soprepared, Denise, and I know
(39:53):
you're the one asking questions,but I do have a question for
you in your preparedness.
I mean, have you talked to yourkids about how you want to feel
as you're, as you're?
You want to feel as you're, asyou're dying.
Speaker 4 (40:06):
What do you mean?
What do you mean?
Speaker 1 (40:07):
feel I mean, have you talked about like, if you, if
you have a perfect death, whenyou have a long maybe period of
dying, have you talked to yourkids about you know, I really
don't want a lot of people there.
Speaker 4 (40:22):
I would like more people there, I would like this
to be a big deal.
Speaker 1 (40:25):
Do you talk about things like that?
I talk about it and I have itwritten out Great, Because those
are some of the pieces I don'tknow for my mom and that's
really weighing heavily on me.
We have the power of attorney,we have the will, we have
arrangements, things like thatwhich she planned very
begrudgingly, but there aresmall things that I want to know
(40:45):
.
I've written my obituary.
Speaker 5 (40:48):
Wow, wow.
I love that about you.
Speaker 4 (40:54):
I just know that there's a lot to deal with when
you lose a parent, because mymother actually wrote her
obituary very little, but youforget as you get older things
you did.
She was an archery champion inOhio during high school.
I never knew that.
Well, I want to know thosethings.
So, I sort of talk about who Iwas, but this is what I hope
(41:16):
they remember and know about mylife.
Do you know what I mean?
Speaker 1 (41:19):
I love that.
I'm so proud of you, Denise.
That's amazing.
Speaker 4 (41:23):
So that kind of stuff's important to me.
Speaker 3 (41:27):
I hope that your kids understand what a gift you are
giving to them Honestly.
If I see them anytime soon, Iwill just remind them of that
for you.
Speaker 4 (41:36):
There's a lot of obligation in being a child to a
parent who loved you.
There is, there's a lot ofobligation, so you have to
separate, I think, obligationfrom care or whatever.
Like you talked about yoursisters, your siblings.
Some of you have lessobligation than the other, but
(41:59):
you Jessica seems to have acaregiving personality.
Not all people have that.
Your sisters might not get thesame joy and reward that you're
getting.
Does that make sense?
And if that's the case, youwant your kids to help.
But I don't think your mom isthat worried about your sisters
that aren't there.
Speaker 1 (42:17):
I don't think so either.
I don't think so.
She loves them and she loves tosee them, and all that's great.
But I think she, I think theway things have played out, make
a lot of sense to everybody,and that's fine.
Speaker 4 (42:28):
So I like asking questions where the other,
because we're our audience and.
I are our listeners, so we allneed to be asking questions to
each other about all this.
But in trying to get aroundthis, dana, what do you hope
people get out of your book?
What are the main things youhope people get out of your book
?
Speaker 5 (42:48):
Being less overwhelmed about the situation,
being more feeling empoweredand knowledgeable about the
disease and caregiving itself,and just knowing that there's so
many amazing resources outthere that are able to help you.
And it's one of the hardestparts is just putting them all
into one place and tracking themdown, which is what we tried to
do at the very end.
There's even such just abeautiful caregiving community
(43:10):
online, which is how I metJessica and how we got connected
.
There's so much information outthere and just want people to
know that they're going to beokay.
Keep trying and keep showing upwith love and it's going to be
okay.
Speaker 3 (43:24):
I loved the book and I don't have.
My situation my parents hasnothing to do with Alzheimer's
or dementia, but the caregivingpiece I just I related to so
much of it and there were somany nuggets in there that have
been invaluable.
I hope that, whether people dohave somebody in their lives
that have been diagnosed withdementia or Alzheimer's, that
(43:45):
they still read this book,because we're all caregivers in
some way at some point and weneed the.
We need the information.
Speaker 5 (43:54):
Yeah, everybody's going to be a caregiver at some
point and also probably needcare at some point, and we need
the information.
Yeah, everybody's going to be acaregiver at some point, and
also probably need care at somepoint.
Speaker 4 (44:00):
Oh, that too.
I don't know if either of youcan answer this, but before we
do our closing, I know there'snot a cure for Alzheimer's or
dementia, but is there anyresearch going on that is
hopeful for all of us?
Also, I never knew any of this,but now I'm in an age where a
few people have gotten diagnosedwith Lewy body dementia, which
is a very fast paced.
(44:21):
It's been a sad experience fora few people around me, but I'd
like to know a little bit aboutthe research going on, if either
of you know anything to behopeful for.
Speaker 5 (44:30):
Yeah, there's a couple of medications on the
market which they're promising,but they also have their
downsides.
But, if I can give a plug,there's this organization that
we've been working with calledHeart of the Solution, and it is
all about exploring the linkbetween vascular health, so your
blood flow, your cardiovascularand brain health.
From what I've read, I mean,what's good for your heart is
(44:53):
good for your brain.
Living a healthy, activelifestyle is going to be good
for your entire body.
So that's just been sointeresting to explore.
Speaker 4 (45:00):
On my end, but isn't some of it genetic, like I was
going to ask this to you,jessica.
Do you ever worry now that yourmother has been diagnosed at 61
?
What's my predicament, or couldthis happen to me?
Speaker 1 (45:11):
Yeah, I don't really live my life that way, Like
worrying about what's terrible,but but I know, no, hear me out,
Denise.
I have not always been likethis.
Okay, I have gotten to thisplace of being okay through a
daily meditation practice andthrough mindfulness practices,
just getting to know that thehabitual patterns of my mind, I
came to learn.
(45:32):
Wow, I usually freak out aboutthe future, so why don't I?
Instead, I tell myselfeverything's going to be okay
and it just it takes sometraining Was there a program you
followed or something that wecould share?
Yeah, so I have studied with RamDass, sharon Salzberg, joseph
Goldstein and Pema Chodron.
I've studied with all of thosespiritual teachers in person and
(45:54):
have garnered so much from them, and you can find their videos
on YouTube.
You can just look them up.
Speaker 4 (46:00):
Will you send me the names though, because I'm not
sure I got, and then I'll shareit in our episode notes.
And it sounds like something Icould use.
Speaker 1 (46:06):
Yeah, absolutely, but to to piggyback on what Dana
was saying, while there's nocure at this time, like Dana
said, taking care of our brainis so incredibly important.
The brain health is also tiedto your gut health, to your
heart health.
These things, these systems ofthe body, are all playing
together.
So eat a lot of vegetables.
(46:28):
y'all you know eat vegetables,move your body and be nice to
yourself, because when we thinkabout the way we talk to
ourselves through all of ourwaking hours, don't we think
that plays into who we are atsome level?
If we are consistently tellingourselves we are not enough,
we're not doing enough, we'renot showing up enough, don't you
(46:49):
think that matters?
I tell myself things likeyou're amazing, jessica, you got
this, you can do this.
I'm so proud of you and Iactively work to do that.
That's why I am the way that Iam.
It's not that I was born likethis.
If I just let my mind be as itwas, I would be like my mom and
be stressed, burnt out, nevertaking rest, and so getting more
(47:13):
of a control over that habitualself-talk really matters and
plays into our overall healthand wellness.
Speaker 4 (47:21):
Okay, we're going to wrap up, but we always ask our
guests I hope you guys saw thisin our email for two takeaways.
I mean, that was a great one,jessica.
If you want to mention it again, you can, but we like maybe
each of you give us one that youhope our listeners leave this
episode with what would otherthan buy the book?
You can't say buy the book ordownload the book.
What do you want them to take?
Speaker 1 (47:41):
away.
I'll go first.
So I want you to take away thefact that everything is
temporary, and why this isimportant is because
impermanence shows us two thingsOne, that the hard stuff, the
uncomfortable stuff, the stuffthat we really don't like, the
icky feelings, are not going tolast forever.
But neither are the happythings, neither are the joyous
(48:02):
moments, neither are the amountof sunsets that we see.
So allow impermanence and thefact that everything is always
changing to let you see that youcan get through the harder
times and let you see to reallyembrace the times that feel good
.
I love that.
Speaker 5 (48:20):
Okay, Dana, you're on .
Communicate, Just have hardconversations, have the scary
conversations.
Have them often.
Your kids are not too young totalk about it.
Your loved ones are not too oldto talk about it either, and
it's going to be scary.
But it's also scary to not knowany of that stuff.
So be proactive, take controland just talk.
Speaker 4 (48:43):
Love that.
Thank you both so much.
We really enjoyed this.
Speaker 1 (48:47):
Thank you.
Yeah, this was a pleasure,right.
Speaker 3 (48:51):
Thank you guys.
Speaker 5 (48:52):
So great to talk.
Speaker 3 (48:54):
Well, that's a wrap.
This was one of thoseexperiences that I think we're
all going to experience at onetime or another.
We want to be prepared.
We see that about so manydifferent times of our lives and
here they're giving us thismanual.
They talk about everything.
I know that it is driven byAlzheimer's.
It is more than that.
That's in this book.
There's just invaluableinformation for everybody.
(49:15):
Please check this out.
Go at the Alzheimer Caregiverswebsite at
alzheimerscaregiversorg.
They just published a freeguidebook that walks readers
through each stage of thedisease and how to provide the
highest level of care.
There's so many resources inthis book.
I hope that you'll check it out, and thank you so much to
Connie Gorant-Fisher, our audioand production engineer, who
(49:36):
helps make everything look andsound fabulous.
And write to us atbiteyourtonguepodcast at
gmailcom.
Please share your comments andideas Ideas, ideas, it is and
please consider supporting ourefforts by going to our website,
biteyourtonguepodcastcom, andbuying us a virtual cup of
(49:56):
coffee.
Don't forget to follow us onFacebook and Instagram, and
remember, sometimes you justhave to bite your tongue.
And that is a huge thing about dementia.
So many people ask me does yourmother know who you are?
Well, I could care less.
Quite frankly, I really don'tcare, because if I'm going to
hang up my own happiness on mymother knowing my name
throughout this journey, I amsetting myself up for
disappointment.
So why do I care if she saysthe letters that make up the
(00:24):
name Jessica, when all I want isto know my mom feels happy and
loved and supported?
Jessica is just one of the manyroles I play.
Speaker 2 (00:38):
Hello everyone.
Welcome to Bite your Tongue thepodcast.
I'm Denise and.
Speaker 3 (00:43):
I'm Kirsten, and we hope you will join us as we
explore the ins and outs ofbuilding healthy relationships
with our adult children.
Speaker 2 (00:50):
Together.
We'll speak with experts, shareheartfelt stories and get
timely advice addressing topicsthat matter most to you.
Speaker 3 (00:58):
Get ready to dive deep and learn to build and
nurture deep connections withour adult children and, of
course, when to bite our tongues.
So let's get started.
Speaker 4 (01:09):
Hello everyone and welcome to another episode of
Bite your Tongue, the podcast.
I'm Denise and I'm here with myco-host, kirsten.
Today's episode is a veryspecial one and it's hard to
believe it's our second episodeof season four.
The episode is about caregiving.
We've wanted to do an episodeon caregiving because so many
(01:29):
parents of young adults arecaught in the middle of building
relationships with their adultchildren and even grandchildren,
and still caregiving for theirown parents.
Also, for all of us at this age, it's time to start thinking
about our own long-term care andtalking about this to our adult
children.
So we're thrilled to welcometwo guests today Jessica Smith
(01:53):
and Dana Ebel.
Jessica's mother was diagnosedwith Alzheimer's disease in 2014
at the early age of 61.
Jessica remembers wanting tohide.
She felt shame and fear as herfamily's world and daily
realities changed immediatelyJoining Jessica is Dana, who was
(02:15):
one of the first employees atthe Alzheimer's Caregivers
Network in 2021.
Finally, we're going to talkabout a new book put out by the
Alzheimer's Caregivers Network.
It's called NavigatingAlzheimer's Disease a Map for
Caregivers and for thoselistening.
If you'll send us an email tobiteyourtonguepodcast at
(02:37):
gmailcom and give us an idea foran episode or give us a review,
you'll have a chance to win ahard copy of the book, so don't
forget to email us.
Speaker 3 (02:49):
I love this book.
Denise, I think I called youright away after I read it.
I'm exactly in this spot rightnow where I am caring for my
elderly parents and I have adultchildren who are still
navigating where they're goingto land.
So the resources in this book Iwas taking like rapid notes as
I was going through it.
I've shared a lot of it alreadywith friends because so many of
(03:11):
us are in this position, so weare really anxious to get
started with this episode.
Welcome, jessica and Dana, sohappy to have you with us today.
Is there anything that wemissed that you would like to
share with our audience?
Speaker 5 (03:25):
The book is available as a free PDF on our website at
alzheimerscaregiversorg.
So if you want a physical copy,you can win one by writing in,
or you can just download a freeversion as a PDF.
Speaker 4 (03:38):
Well, great, anything you want to add, jessica,
before I ask you a question, oh,no, go for it.
Speaker 1 (03:50):
I mean, the only thing I guess I could add is
that a huge part of my journeyso far with my mom that has gave
me help throughout it would bemy mindfulness practice which I
want to touch on today.
Speaker 4 (03:54):
Okay, that's great.
Jessica, I feel bad asking thisIs your mom still alive?
She is.
Yeah, don't feel bad, let'scelebrate that.
Yeah.
Speaker 1 (04:06):
No, that's a great question.
I love it.
I love it.
My mom is still alive.
Just to paint a quick picture,I actually am a long distance
caregiver for my mother, veryinvolved.
Just because we're longdistance doesn't mean it's not
on my mind 24-7.
She is actually in Florida andI reside in North Carolina, so I
spend a lot of time down there.
She spends a lot of time here.
Speaker 4 (04:25):
There's a lot of back and forth and a ton of video
calls, oh, I bet.
So one thing that I want tounderstand is what's the
difference between Alzheimer'sand dementia?
We hear this all the time.
Now I'm 67.
I'm sure I've got a littledementia.
I'm, I've, or, or you know thisthing they call senior.
What's it called?
I had a senior moment.
You can't remember someone'sname, you can't remember an
address.
Oh my gosh, I've known my phonenumber my whole life and now I
(04:45):
can't remember it.
I don't think I haveAlzheimer's, but what's the
difference between Alzheimer'sand dementia or senior moments?
Speaker 5 (04:52):
Yeah, so Alzheimer's is a form of dementia.
So if you have Alzheimer'sdisease, you have dementia.
But if you have dementia youdon't necessarily have
Alzheimer's disease.
There's a lot of differentforms of dementia out there.
How do they diagnose it?
It can be kind of complicatedto get a diagnosis.
It can take a really long time.
Jess, is that something youwant to go into with your mom's
(05:13):
diagnosis?
Speaker 1 (05:14):
Sure.
So for my mom.
She just did a simple test atthe neurologist that it was just
some questions that were asked.
She had to draw a clock.
It's a very standard type test.
But something I do want to touchupon before we go on is Denise
you kind of referred to it asyou know you potentially having
dementia or a mild case ofdementia.
So I just want to squash a myththat dementia is not a normal
(05:37):
part of aging, and this issomething that needs to be
really hammered home, not justfor those of us outside of the
healthcare profession, but thereare a lot of providers within
the healthcare system who alsoassume that this is a normal
part of aging, and it truly isnot.
Our brain is meant to agehealthfully, as into our elder
(05:58):
years.
So something like maybe havinga little forgetfulness here and
there, that is a normal part ofaging.
I mean, just like how you can'trun a marathon the way you once
did, that is a normal part ofaging.
I mean, just like how you can'trun a marathon the way you once
did, right, because yourmuscles are just not the same.
It's the exact same thing withyour brain, I think.
I just want to point out.
Let's not take it easy on howwe use that word.
Not that we're doing somethingwrong by saying it, but by just
(06:20):
recognizing that there isdementia and then there's just
normal brain aging.
You know you're going to forgetsomething here and here and
again.
You're going to walk into aroom every once in a while and
forget why you walked into thatroom.
There's also much, muchresearch coming out now about
the female body and menopauseand how that affects the brain
(06:42):
as well.
Those hormone drops aredifferent, so let's just all
know that just because we'regonna go into our 70s, 80s, 90s,
doesn't mean you're gonna getdementia.
Speaker 4 (06:51):
I wanna get more into what we're gonna talk about
today with our adult childrenand how to prepare them and also
the sandwich generation.
But when do you start gettingconcerned?
When other people tell you whendo you know whether someone
should go get checked or not getchecked?
Or I said to someone threeweeks after Thanksgiving where
did you have Thanksgiving?
I don't know where we hadThanksgiving.
That really concerned me.
Speaker 1 (07:14):
Yeah, I think it really.
Just like every individual isunique, everyone living with a
brain is unique, and how thatbrain ages is unique, right, so
our approach also needs to bevery unique to people we may be
close to in life and maybe havea concern with.
For my mom and I'll speak tothat there were pretty
significant changes not havingto do with memory loss, believe
(07:36):
it or not.
It was more personality typechanges where we were noticing a
lack of organizational skills.
We were noticing where therewas very strong organizational
skills.
My mother Patty she is she hadher linen closet.
She had it organized by holiday, you know, and she would use
some towels and then the nextholiday would be on top.
(07:58):
I mean, when I saw that closetstart to go awry, that's when I
knew something was up.
Interesting.
Yeah, yeah.
So there are a lot of symptomsthat may you know, may show that
aren't necessarily memory loss.
And I think, in terms of anapproach and like how do you
know, I think it's really up toyou as a friend or you as a
(08:19):
family member to say I'mnoticing something here, can we
talk about it and really openingthat door to having a two-way
conversation.
But I think, with a lot ofpeople and my mom, it was very
difficult for my mom to hearthose concerns.
Speaker 4 (08:36):
That's what I was going to ask you.
Share your journey a little bit.
Go ahead, Jessica, and tell ushow you approach this and how
you've dealt with it.
Speaker 1 (08:43):
Sure, I would say the beginning was probably one of
the most difficult parts of thisjourney in terms of getting my
mom on board with going to aneurologist.
Just that very first step wasvery difficult for my very
independent and sassy mom.
I mean, she just did not wantto do that.
To my mom's credit, she had agreat way of hiding some of
these symptoms.
(09:03):
You know she played them offvery well and you know I have
learned years later that thereis actually a symptom of
dementia that does not allow theperson to have that same level
of self-awareness that they oncedid.
So there could be my momactually with a healthy brain
refuting our claims thatsomething's going on.
(09:25):
But there can also be thissymptom.
Dana, what's it called?
Agnosia?
Is that what it's called?
Speaker 5 (09:32):
That's ringing a bell .
Speaker 1 (09:33):
Yeah, I believe it's agnosia.
Anyway, that permits my motherfrom even or someone living with
dementia from knowing thatsomething is even going on you
know that the forgetfulness, iseven there so quickly.
We had a few familyinterventions with my mom, the
entire family, my stepdad and mydad included my sisters, and it
(09:53):
took probably three to four ofthose many, many phone calls for
her to finally go to theneurologist and get a diagnosis.
Speaker 4 (10:02):
And did someone go?
Speaker 1 (10:02):
with her, I assume.
Yeah, my stepdad went with herand as soon as they got out of
that appointment, my mom told mystepdad don't you dare tell
anyone.
You know, I do a lot of puttingmyself in my mom's shoes
through this journey and Iencourage anyone who knows
someone that's living withdementia to do the same thing,
because we, the people with thehealthy brains, we always think
(10:23):
we know what's best, but, like,let's take a moment and just
reflect on what this experiencemust be like for them.
I can understand my mom'shesitation, even if she was
aware, to buy into this, becausefor a lot of people they
immediately think well, dementiadiagnosis means the end, right,
because as society we have thishuge tragedy narrative that
(10:45):
it's all doom and gloom once youget a dementia diagnosis, which
could not be further from thetruth.
Speaker 3 (10:50):
But we can talk about that later, your mom was
relatively young and so I canimagine.
Speaker 4 (10:54):
I can imagine why she wouldn't want to initially.
Speaker 3 (10:59):
You know, it's like she has to take her own breath
first to be able to sort of wrapher brain around, so to speak.
What was next before she'd becomfortable talking to all of
you?
Speaker 4 (11:11):
Absolutely.
I'm older than your mother wasand I think if it happened to me
now, I would suddenly feel dumb, scared to say anything, scared
to go anywhere.
I mean, how do you get pastthat by?
Speaker 1 (11:23):
conversations like these, by talking, by having
this conversation on morepodcasts, by chatting with our
friends and family.
What would it be like if I gotthis certain diagnosis?
I think as a society and thisis where some of my initial
shame came in as a society, wedon't talk enough about things
like disease, illness, dying.
(11:44):
Society, we don't talk enoughabout things like disease,
illness, dying, so that whenthat time actually comes, these
big life moments actually cometo us, we don't want to talk, we
shrink.
You know why we shrink?
Because it's brand new, it's anew topic to us.
So I feel like if we had beenin a position as a family, where
my mom was more open andtalking about things like this,
like what will happen when shegets older, no matter what the
(12:06):
disease is or not, you know, Ithink she would have been a
little bit more open to havingthose conversations at the time
of diagnosis.
Because I'm that way Ifsomething were to happen to me.
I'll talk to anybody about it.
Speaker 4 (12:19):
You know I would talk to my family.
I talked to my kids a lot aboutdeath and dying and they always
say every time they live out ofstate, when they get together,
the first thing I say is now,mom, why, every time we get
together, the first thing youwant to talk about because I
want to get it out of the way.
Now, this is going to be thenext conversation I'm going to
have with them, because I'vemore talked about where all my
things are, what I want, how toaccess this, who to contact
(12:42):
about this.
So how do I approach somethinglike this?
Because everyone wants toignore.
Oh, mom, it's not going tohappen.
Speaker 5 (12:49):
Something in my family that I'm like, eternally
grateful for is my grandparentswere so prepared and they had
everything all their wishes, alltheir paperwork, everything in
a massive binder.
So it was all written down, andthey had multiple conversations
with their children and withthe grandchildren about their
wishes and their plans.
But having a solid thing toreference and flip through it
(13:14):
just made everybody's lives somuch easier.
And it's also it's not a onetime conversation.
It's going to be manyconversations that evolve over a
lot of time conversations thatevolve over a lot of time.
Speaker 4 (13:26):
So how do we approach the whole idea of Alzheimer's
or dementia?
So what do I say?
What do I do?
I guess start with that onequestion.
You wrote this question,Kirsten, about caregiving and
that we feel responsible for ourparents.
Are there ways to prepare forthis that make their obligations
less stressful?
Speaker 1 (13:40):
I mean, I think so much about this just relies on
us having this open dialogue,and that takes work internally.
You know, I think I know thismight sound a little woo woo,
but the best place to start allof these things is with yourself
and in your own mind.
There's so much going on in ourminds, 24, every waking hour,
(14:06):
this nonstop chatter that we allhave.
It's the critic, it's the judge, it's our favorite cheerleader,
all of these things.
But this is always pepperingevery single experience that we
have.
So I think a place to start isinternally, and what that means
is to reflect on our owneventual death, which will
literally happen to every singleone of us, but to frame it in a
(14:29):
way like of more of excitementrather than doom.
We are all born and we all die,but when in that birth we really
have little involvement overhow things go, who's in the room
, what music mom has playingduring that time, all of those
things and we arrive with ourdeath.
It is this sacred time of ourlives that we actually get a say
(14:53):
over, that we actually can plan, and I think getting
comfortable with that starts bygetting to know yourself a
little bit better, getting toknow that nonstop chatter in
your mind.
And what is it saying abouteverything?
What is it saying about things?
Because once we start to ponderour own death and our own end
(15:13):
of life, we start living in awhole different way, because we
realize we have a finite amountof times with our family, we
have a finite amount of showers,we have a finite amount of
Mondays, believe it or not, andone day, on our deathbed, when
you know, 20 years earlier, wemay say, oh Monday, we may be
(15:33):
thinking I wish I had anotherMonday.
So these things happen,starting with our mind and
within ourselves.
Speaker 3 (15:41):
So I think a great place to start is just to each
of for each Well, I think thatthat same idea you know, that's
basically taking care of myselffirst goes along with even in
the book, where it talks aboutputting on your own air mask
first.
So the care, the caregiver, isgoing through that same mental
(16:05):
process and needs to go throughthat same mental process that
we're asking of ourselves.
Right, but that was, that'swhat I use, that phrase all the
time Put on your own air maskfirst, because I'm worthless to
anybody if I'm not OK.
And and for the person that'snow being diagnosed, same thing.
Yes.
Right, get your head around this, get comfortable with this and
(16:26):
I don't know for me if theconversations leading up to it
ever really fully prepare, butjust knowing that you've set it
up in a way like yourgrandparents, with the binder,
that's invaluable.
I just went through this with afamily member that passed and he
had three large binders thatcovered every possible scenario
(16:49):
every what, if, every when itwas awesome and it really took a
lot of the burden off of therest of us.
So I think there's a lot ofthings we can do to prepare that
I love.
The other thing that I thinktoo, with Alzheimer's again in
the book that we talk about istheir behavior when they've been
diagnosed is sometimes out oftheir control, and wrapping our
(17:12):
heads around that as well, Ithink, is huge, hugely important
.
Speaker 5 (17:17):
There's more research coming out that shows that your
behavior can be affected up tolike 15 or 20 years before
you're even diagnosed.
I mean, these are things.
It's a disease that makeschanges in your brain so far
before you're diagnosedofficially.
And I was just talking withsomebody who found out that
their father was having anaffair on their mom for years
(17:40):
and he was just diagnosed withdementia.
And then we're having a reallybig conversation about like,
could that have been thedementia?
We don't know for sure, butit's just a very painful thing
to have to think about and tohave to analyze after you have
the diagnosis If your partner oryour loved one has been
behaving erratically or makingchoices that don't seem like
(18:00):
them.
Speaker 1 (18:01):
Just to speak to that real quick.
I feel very strongly that muchof my mom's personality has
remained intact through thisjourney, and that's why I think
it's another reason why I thinkit's important to start having
these conversations now, becauseI think that years, even
decades, before a diagnosis, wekind of need to get ourselves
(18:22):
right, because we may not haveas much control over those
habitual patterns that wedisplay day in and day out.
You know, for instance, my momnever, or never, accepted help.
I can trace this back to beinga teenager and me vacuuming, and
her saying you're not doing itright, just let me do it.
(18:43):
Or my stepdad offering to dosomething at the house changing
a doorknob and my mom saying no,you're not going to do it right
, I'm just going to do it.
Well, that inability to accepthelp has now moved into her
inability to accept help as I'mdressing her because she is
unable to dress herself due todementia, and so I think it's
(19:04):
important to realize like wetake these same traits with us.
It doesn't just necessarilycompletely go away Now.
There are certain types ofdementia that may affect the
personality more strongly thanothers, but those habitual
patterns, those ways of being,they don't just go away.
And so you know, I have beentraining myself to accept help
(19:28):
when my husband offers help,instead of my natural
inclination to say no, no, no,I've got this, to say yo, yeah,
this would be great.
Yeah, ken, please help me out.
It feels weird at first, itdoesn't feel natural, but I'm
basically trying to set newneural pathways so that when I,
if I'm in my eighties and I dohave a cognitive impairment,
(19:48):
that will be the naturalinclination of my mind to accept
help rather than refute it.
Speaker 4 (19:56):
Okay, so all of this is all the stuff's going through
my head.
I'm your mother, Jessica.
I'm just going to tell younobody helps me.
I'm almost embarrassed whenpeople try to help me and mine
isn't.
I can do it better.
It's I can do it faster.
I never could do it better.
It's just I can't wait for youto get it done.
I never had parents withAlzheimer's, but I had parents
that were sick, died in theirnineties, long distance.
I felt compelled to take careof them.
(20:17):
I love them.
I don't care.
If you told me, put your ownmask on first, I would have been
.
I want to do this for them.
When you say in your book thatsay things like take care of
yourself, get a massage, goexercise, that was last on my
list, but I also was youngenough that I could fly back and
forth.
I don't want that for mychildren, so I don't want to
(20:39):
change my neuropathways to wanthelp.
I think that you neverunderstand a situation until
you're in it.
When my mother finally died,she was DNR and I'll never
forget this.
They went in to revive her andI had to say stop, that's what
she wants.
But to say that was the hardestthing that I've ever done in my
whole life and I think peopledon't realize it till they're
(21:01):
there.
I think I know what I'm gonnado I say listen, if I get
Alzheimer's, put me away in thecheapest place you can find,
don't come visit me.
And I don't know whether I'mreally gonna feel that way.
What if I don't even know mykids?
Do I care if they come andvisit?
Speaker 5 (21:14):
It's so interesting that you're saying that you
don't want to be a burden toyour kids, but then also, right
before that, you were sayinglike you did all this stuff for
your parents because you lovethem so much.
So your kids are going to dothat for you.
They're going to do things.
So I think that the best thingyou can do for them in the long
term is be proactive abouttaking care of your health.
(21:35):
Be proactive about going to thedoctor and not making them do
multiple interventions for you,making those plans in place to
make their life easier, so thatway, if and when you get sick,
there's not going to be anyguesswork on there and they're
not going to be like what wouldmom want.
They're going to know becauseyou've already had multiple
conversations to spell it out.
Speaker 3 (21:56):
Well, I have a question on this.
So part of this for me being inthe middle of this is that I've
got a couple of kids that livenear me and my parents live near
me.
So how do you lessen that timecommitment?
To carve out the time to eatwell, exercise, get enough,
sleep, not stress?
(22:16):
It's not as easy to do whenyou're in the middle of it and
because I'm right here, I'm theone that gets all of those calls
, all of those emergencies, allof those.
Can you run here?
Can you run there?
Because when you are in themiddle of it, you're in the
middle of it.
There's not really time forbreathing.
I don't know if there ifthere's any words of wisdom that
(22:39):
we can give to our listenersabout that time commitment piece
.
How do you carve it out?
Speaker 5 (22:46):
Yeah, it's very hard when you're in it and, jess, I
would love to hear about, like,the things that you've done in
your real life.
But as for the book, we reallytried to hit home with that
because we know it's anaspirational goal.
So if we talk about, like,doing five different things for
yourself, and we know a readeris able to implement one of them
into their life, that's a win.
Not every day is going to beperfect, not every day is going
(23:07):
to be doing something nice foryourself, but if that is, at
least we can take the guilt awayfrom that and so when they have
that moment they don't feel badabout it.
That's a win.
Speaker 1 (23:18):
Yeah, and I think part of self-care is boundaries,
and I know it can feelimpossible.
I certainly have gone back andforth with overextending myself
and having to pull back due tojust being completely
overwhelmed with all of the helpthat I'm providing.
But we have to have some sortof boundary because, at the end
(23:38):
of the day, it is our parents'life, it is our kids' life and
it is our lives.
They are all separate Really atthe end of the day.
They are separate, even thoughit does not feel like it, and
every fiber of your being can betelling you differently.
Every fiber of your being canbe telling you differently.
But I know when, for mysituation, when I overextend
(23:58):
myself, I often ponder would mymom want me to be in this state
of stress?
I know she would not, and so itis that it's almost like she's
giving me advice without givingme advice and it's so beautiful
and I'll just pull back veryslightly.
And I think, in terms of, likethe time commitment and the time
involved, yeah, like whenyou're in it, like you don't
(24:19):
have time to go get a massageyou kidding me Like you barely
have time to eat, because I havenoticed, when I am full-time
caregiving for my mom, all thelittle ways I remove some
healthy habits.
I'm a very healthy person.
I prioritize good food,movement, meditation, all of
those things into my life.
And I noticed where I kind ofcut corners.
(24:41):
When I'm full time with my mom,for months at a time, I'll be
with her and I won't go on aslong of a walk or I won't do
this or I won't do that.
My lunch is really quickbecause I'm more worried about
her lunch, things like that.
But I still, within that, Istill prioritize five minutes of
sitting quietly in the morning.
I still prioritize some sort ofmovement or walk while my
(25:03):
mother is still sleeping.
So, even though it may feelimpossible, you know, I'm sure
we can all find something fiveminutes, two minutes or some,
some way to continue to care forourselves, because it being
impossible is a script in ourmind.
Speaker 3 (25:19):
Right, right, well, and it leads kind of into my
next question and Denise and Iwere both control freaks, but
about different things, andrelatable, and I think that
understanding this idea that weneed a team to do this and not
just our doctors and the otherpeople that might surround
nurses, whatever that might besurrounding us, but how do we
(25:39):
engage for me, my siblings andmy children in a way that
doesn't interrupt their lives,particularly because they don't
live in the same state?
So I am, really I'm what do youcall that?
The first responder, so tospeak.
I'm what do you call that, thefirst responder, so to speak?
Right, how do I engage them ina way that I'm honoring their
lives and the boundaries thatthey have, but also getting the
(26:01):
support that I need?
Speaker 1 (26:03):
Can I ask why you don't want to disrupt them, like
why you use that word?
Speaker 3 (26:07):
So maybe that's the right word.
It's just that I think it'smuch.
They're in different stages oftheir lives.
They're in different stages oftheir lives and so, first for my
kids, they do what they canwhen they can.
I don't want to ask them formore, because I want them to be
on that journey.
Right that makes sense and mysiblings same kind of thing.
Their lives are in differentplaces than where mine is, so I
(26:31):
am the one that has because Ilive here.
It's easier for me to drive the20 minutes over than it is for
my sister to get on a plane.
She still has kids in highschool and to be here it's much
more difficult but allows themto participate in a way that is
(26:53):
helpful for me as much as it isfulfilling for them, because I
know they want to help.
Speaker 1 (27:02):
I'm glad you have siblings that want to help.
That alone is a huge deal, Iknow.
For me, something important hasbeen well, two things Naming
how I need help.
As the long distance caregiver,I am the first responder and I
(27:28):
have a sister who lives about 40minutes away from my family,
from my mom and my stepdad.
I am kind of in an oppositescenario than you, and the
reason this has played out likethis in our lives is because I
have the emotional wherewithalto be there for my mom and and
my sisters.
(27:48):
I'm the oldest of three girls.
They sort of had a differentversion of my mom.
They were living at home whenmy parents went through a
divorce and my stepdad moved in,so they were there while I was
in college and forming afriendship with my mom.
So we had just a differentrelational aspect with my mom.
That provides me with moremotivation to show up and
(28:09):
provides them with a little bitless, and for that reason I say
what I need, but I don't expectthem to always show up in the
way that I.
That may be best for me or mymom, but I do have people in my
life that do show up for me andthat are rocks for me as a
caregiver, because that is likesuch a huge aspect of this is
having a caregiver for thecaregiver Right.
(28:32):
I mean, Kirsten, I'm sure inyour life you probably have
someone that is supporting youthat you can go to, maybe for a
hug or a phone call when youjust want to like melt.
Speaker 5 (28:43):
Oh, absolutely, absolutely.
Speaker 1 (28:44):
And I do too.
I have some really phenomenalbest friends.
I have my dad, I have myhusband, who is my rock.
These are the people that aresupporting me while I support my
mom and my stepdad, jessicasomething you said changed my
life right now.
Speaker 4 (28:59):
Okay, when I talked about how to prepare my kids, or
not wanting them to do it, yousaid something about when you're
really stressed out.
You think, would my mom want meto be that stressed out?
I think that's a goodconversation for me to have with
my children because, you'reright, they might feel like they
need to be there in some way,but what I don't want is them to
(29:21):
feel like they're way you knowthey have, if they have
something in their life that'sreally important, or stressing
them out.
I don't want to be the otherpiece.
Does that make sense?
And I'm going to ask them toask that question to themselves
and give them the permission toask that question.
That was really the mostvaluable piece of advice right
(29:42):
now for me, because, instead oftelling me to put me in the
cheapest place, I can say justask yourself is this really
stressing you out?
Speaker 1 (29:49):
Well, Denise, because , as it was an act of love for
you to give care to your parents, some of your children may feel
that way too.
Some of them may not.
It may not be in theirwheelhouse to show up in the
same way you did, but by denyingyour kids the ability to care
for you, you're kind of likedenying the love that they want
to share with you.
And, yeah, if you, if you couldjust have this conversation and
(30:11):
get to the crux of why you knowyou're feeling this way and I
think you just did, that can bea huge opening to even more
conversation and what thatreally means and what that's
that looks like.
Because, denise, do you reallywant to be just like put away
and wherever, whatever home?
Speaker 4 (30:28):
It depends what my memory is like.
If I'm really sick, I wouldlike someone to make sure I'm
getting the right care, orwhatever, but I don't understand
dementia and Alzheimer's, youguys.
So I don't know.
Will I know where I am?
Will I care whether I'm welltaken?
Speaker 1 (30:43):
care of.
You will know if you're takencare of.
You will know if you're takencare of.
You will know if you are loved.
You will continue to experiencethe range of emotion and, I
think, the deepest range ofemotion, when we get down to it.
You're going to still noticelove and compassion.
There may be a time when youcannot remember a child's name,
(31:04):
but who cares if you know youfeel safe and loved around that
child?
And that is a huge thing aboutdementia.
So many people ask me does yourmother know who you are?
Well, I could care less.
Quite frankly, I really don'tcare, because if I'm going to
hang up my own happiness on mymother knowing my name
throughout this journey, I amsetting myself up for
(31:25):
disappointment.
So why do I care if she saysthe letters that make up the
name Jessica, when all I want isto know my mom feels happy and
loved and supported, becausetruly, jessica is just one of
the many roles I play.
It's not who I am.
A name is not any of us.
We could all have a differentname right now and still be the
(31:47):
same being.
Could we agree to that?
So why does it matter?
With dementia Such a, you know,frustrating thing.
It doesn't matter.
What matters is that our personis loved and supported and feel
safe.
Speaker 4 (31:58):
I think about, wasn't it?
Justice O'Connor's husband thatwas diagnosed with Alzheimer's,
went into a facility, fell inlove with another woman.
She was really happy for him.
How do you continue to love andcare when the relationship is
so different?
You don't have the same.
Well, I'm going to give you anexample, and I actually asked
(32:21):
this.
I have a very dear friend.
I don't know whether it'sAlzheimer's or dementia.
I have a very dear friend.
I don't know whether it'sAlzheimer's or dementia.
I think she knows who I am buthas no idea how she knows me.
I struggle with what to talk toher about.
I love her because she was mymentor through life.
She's given me so much.
I try to go visit her and Iwant to spend a couple hours
with her, but I don't know whatto do.
Speaker 1 (32:43):
I will tell you that curiosity is your best friend.
You just need to be there and,like the thing is is like we
worry, like what?
What can we talk about?
What can we say?
Well, when you're just thereand you're fully there, with
your person and not in your mind, worrying about what to say
next or what to do, you have amuch better chance of going with
(33:03):
the flow, whatever that flowmeans.
I can't even give you, I can'teven tell you what exactly to
talk about, because things willnaturally arise with your
presence in the scenario.
Speaker 4 (33:14):
So now, when she says to me I have all these projects
going on.
You can't imagine how big myteam is.
At first I was saying to myfriend you're not working right
now.
Then I started saying tell meabout your team.
I just decided to go withwhatever you figured it out,
that's the golden ticket, that'sit.
Speaker 1 (33:30):
It's to match a mood, just match the mood.
This is also in the same veinas when someone living with
dementia is upset oh so-and-so,stole my whatever, stole my this
, stole my this.
You know, they moved it, theytook it from me.
Okay, so you have two optionsthere.
You can say no, no, patty, thatdid not happen, you are wrong.
(33:53):
Or you can say I'm so sorry tohear that.
Let's take a look and see if wecan find those things.
Because, again, the personliving with dementia is still
feeling all the same range ofemotions.
They just want to be heard,they want to be understood.
Your friend just wants to.
(34:13):
They want to talk about theirteam, hear about that team.
You nailed it, denise beingable to switch and to know okay,
maybe she just wants to talkabout this and allow her to talk
about it.
What's the harm in that?
Speaker 4 (34:29):
Well, at the beginning you felt like you were
helping them by saying wealready did, that I did come
yesterday.
And then I realized, as she gotworse, that wasn't helping
anything.
Speaker 1 (34:40):
Right, and there is nuance there, for sure.
Yeah, you have to.
Speaker 4 (34:44):
It seems to me.
It took me time to realize thatI better just start agreeing.
Speaker 1 (34:49):
Yeah, I mean we're all human, we're all trying to
figure it out, and that's wherehaving grace and compassion for
yourself on this journey mattersa lot.
I look back on old videos, backto 2017, and you know I'm eye
rolling my mom some of thethings she says and I.
I'm kind of embarrassed by that, but at the same time, this was
all new to me too.
I I have never once read a bookon Alzheimer's.
(35:11):
The only book that I havethumbed through is Dana's book.
I have never read anythingabout this disease, it's true,
and it's just wild to me that Iwas able to intuitively come to
these conclusions throughout myjourney.
But I'm sub two.
None of us are perfect and I'msure I'll mess up, more mess up,
(35:32):
quote, unquote.
I guess we're not really messingup if we're trying.
Speaker 3 (35:35):
I think that's valid and I one of the first things
about the book and it's I thinkit's towards the beginning of
the book where it talks aboutgrieving.
And we're not just grieving,it's not just that you grieve
the loss of a person, but you'regrieving the loss of all the
change and it might be in orderto be this caregiver.
You're giving up your career,money, relationships, your own
(35:58):
independence to just take off ata moment's notice and travel
with your spouse or whoever.
So I love that part of the bookand I hope others will read
this and appreciate that we'remourning lots of different
aspects when our whether it'sour parents or anybody else when
that diagnosis hits, and togive ourselves the space and the
(36:22):
grace to really do thatmourning.
My question is how do you notget stuck in that grief and that
anger while you're also, at thesame time, having to be the
caregiver?
It's hard.
You don't have as much space.
Speaker 1 (36:37):
Realize that everything is temporary.
Speaker 5 (36:40):
Exactly that and just being mindful about your
situation and checking in withyour feelings and being open to
happiness and positive things.
And, like Jess said earlier,everybody thinks that this
diagnosis is like doom and gloomand the end of the world, but
there's still so much love andthere's so much happiness even
way into a diagnosis.
So just be kind to yourself.
Speaker 4 (37:03):
One of the things we haven't discussed and most of
our listeners are older and thisis another thing I think our
adult kids have to think about.
When you're a caregiver to aromantic partner, your husband
or your wife is diagnosed,you're fine.
Number one what role can ouradult children play in possibly
helping the other parent?
And number two, how do us, asthe spouse of the person that
(37:26):
might be diagnosed, deal withlosing our partner in many?
I mean, you don't lose them,but you lose them in many ways.
Speaker 1 (37:33):
Yeah, this is another one that I ponder a lot,
because I'm in such a wonderfulrelationship and I wonder what
it would be like if that dayever comes.
And what that makes me do isnot worry.
It just makes me be morepresent with him now, because
none of us know what's going tohappen.
We can all.
Something could happen tomorrowin a car, something could
(37:56):
happen walking.
We never know.
We set up these big things likeyou know.
How is it going to be 30 yearsfrom now?
Well, I don't know.
Let's just be here now and see,because I feel like otherwise
we're kind of wasting our timeand energy worrying about the
future.
But I am sure, when it comes toa spouse, that that change is
(38:17):
incredibly hard.
I'm watching my stepdad gothrough it with my mom right now
.
And to answer one of your other, your other question, how do we
support the other person inthat relationship?
I support my stepfather.
It's hard.
It's the other biggestchallenge for me of this, of
this entire puzzle, and that'sbecause he will also not accept
help.
So I think, before I can eventell you the ways that I help
(38:41):
him, I think it's just reallyimportant for all of us to get
into a mode of accepting help,because, I mean, we are all
going to need help one day,whether it be because of an
illness or because we're caringfor someone else.
But we need to just get betterat accepting help as a society.
Speaker 4 (38:59):
You know, you sort of said two different things.
So let's get prepared, butlet's live in the moment.
So you're right, you don't wantto think what's going to happen
in 30 years, but because I'mnow at an age where I'm
surrounded with people that arefacing some of these things my
husband and I always talk about,should this happen to you, or
this happened to me, what wouldyou want?
(39:20):
What would you?
want me to do that sort of thing.
I think it's because I lost myparents when I was younger and I
knew what needed to be done.
Does that make sense?
But I think, yes, you have tolive in the moment but at the
same time, prepare for thefuture.
Speaker 1 (39:33):
Absolutely.
Both can be true at the sametime.
But there is preparing andusing our mind logically to
prepare, and then there'soverthinking and over worrying.
That's when preparing gets outof balance right.
So so there is that that youknow duality there.
But one thing that you're soprepared, Denise, and I know
(39:53):
you're the one asking questions,but I do have a question for
you in your preparedness.
I mean, have you talked to yourkids about how you want to feel
as you're, as you're?
You want to feel as you're, asyou're dying.
Speaker 4 (40:06):
What do you mean?
What do you mean?
Speaker 1 (40:07):
feel I mean, have you talked about like, if you, if
you have a perfect death, whenyou have a long maybe period of
dying, have you talked to yourkids about you know, I really
don't want a lot of people there.
Speaker 4 (40:22):
I would like more people there, I would like this
to be a big deal.
Speaker 1 (40:25):
Do you talk about things like that?
I talk about it and I have itwritten out Great, Because those
are some of the pieces I don'tknow for my mom and that's
really weighing heavily on me.
We have the power of attorney,we have the will, we have
arrangements, things like thatwhich she planned very
begrudgingly, but there aresmall things that I want to know
(40:45):
.
I've written my obituary.
Speaker 5 (40:48):
Wow, wow.
I love that about you.
Speaker 4 (40:54):
I just know that there's a lot to deal with when
you lose a parent, because mymother actually wrote her
obituary very little, but youforget as you get older things
you did.
She was an archery champion inOhio during high school.
I never knew that.
Well, I want to know thosethings.
So, I sort of talk about who Iwas, but this is what I hope
(41:16):
they remember and know about mylife.
Do you know what I mean?
Speaker 1 (41:19):
I love that.
I'm so proud of you, Denise.
That's amazing.
Speaker 4 (41:23):
So that kind of stuff's important to me.
Speaker 3 (41:27):
I hope that your kids understand what a gift you are
giving to them Honestly.
If I see them anytime soon, Iwill just remind them of that
for you.
Speaker 4 (41:36):
There's a lot of obligation in being a child to a
parent who loved you.
There is, there's a lot ofobligation, so you have to
separate, I think, obligationfrom care or whatever.
Like you talked about yoursisters, your siblings.
Some of you have lessobligation than the other, but
(41:59):
you Jessica seems to have acaregiving personality.
Not all people have that.
Your sisters might not get thesame joy and reward that you're
getting.
Does that make sense?
And if that's the case, youwant your kids to help.
But I don't think your mom isthat worried about your sisters
that aren't there.
Speaker 1 (42:17):
I don't think so either.
I don't think so.
She loves them and she loves tosee them, and all that's great.
But I think she, I think theway things have played out, make
a lot of sense to everybody,and that's fine.
Speaker 4 (42:28):
So I like asking questions where the other,
because we're our audience and.
I are our listeners, so we allneed to be asking questions to
each other about all this.
But in trying to get aroundthis, dana, what do you hope
people get out of your book?
What are the main things youhope people get out of your book
?
Speaker 5 (42:48):
Being less overwhelmed about the situation,
being more feeling empoweredand knowledgeable about the
disease and caregiving itself,and just knowing that there's so
many amazing resources outthere that are able to help you.
And it's one of the hardestparts is just putting them all
into one place and tracking themdown, which is what we tried to
do at the very end.
There's even such just abeautiful caregiving community
(43:10):
online, which is how I metJessica and how we got connected
.
There's so much information outthere and just want people to
know that they're going to beokay.
Keep trying and keep showing upwith love and it's going to be
okay.
Speaker 3 (43:24):
I loved the book and I don't have.
My situation my parents hasnothing to do with Alzheimer's
or dementia, but the caregivingpiece I just I related to so
much of it and there were somany nuggets in there that have
been invaluable.
I hope that, whether people dohave somebody in their lives
that have been diagnosed withdementia or Alzheimer's, that
(43:45):
they still read this book,because we're all caregivers in
some way at some point and weneed the.
We need the information.
Speaker 5 (43:54):
Yeah, everybody's going to be a caregiver at some
point and also probably needcare at some point, and we need
the information.
Yeah, everybody's going to be acaregiver at some point, and
also probably need care at somepoint.
Speaker 4 (44:00):
Oh, that too.
I don't know if either of youcan answer this, but before we
do our closing, I know there'snot a cure for Alzheimer's or
dementia, but is there anyresearch going on that is
hopeful for all of us?
Also, I never knew any of this,but now I'm in an age where a
few people have gotten diagnosedwith Lewy body dementia, which
is a very fast paced.
(44:21):
It's been a sad experience fora few people around me, but I'd
like to know a little bit aboutthe research going on, if either
of you know anything to behopeful for.
Speaker 5 (44:30):
Yeah, there's a couple of medications on the
market which they're promising,but they also have their
downsides.
But, if I can give a plug,there's this organization that
we've been working with calledHeart of the Solution, and it is
all about exploring the linkbetween vascular health, so your
blood flow, your cardiovascularand brain health.
From what I've read, I mean,what's good for your heart is
(44:53):
good for your brain.
Living a healthy, activelifestyle is going to be good
for your entire body.
So that's just been sointeresting to explore.
Speaker 4 (45:00):
On my end, but isn't some of it genetic, like I was
going to ask this to you,jessica.
Do you ever worry now that yourmother has been diagnosed at 61
?
What's my predicament, or couldthis happen to me?
Speaker 1 (45:11):
Yeah, I don't really live my life that way, Like
worrying about what's terrible,but but I know, no, hear me out,
Denise.
I have not always been likethis.
Okay, I have gotten to thisplace of being okay through a
daily meditation practice andthrough mindfulness practices,
just getting to know that thehabitual patterns of my mind, I
came to learn.
(45:32):
Wow, I usually freak out aboutthe future, so why don't I?
Instead, I tell myselfeverything's going to be okay
and it just it takes sometraining Was there a program you
followed or something that wecould share?
Yeah, so I have studied with RamDass, sharon Salzberg, joseph
Goldstein and Pema Chodron.
I've studied with all of thosespiritual teachers in person and
(45:54):
have garnered so much from them, and you can find their videos
on YouTube.
You can just look them up.
Speaker 4 (46:00):
Will you send me the names though, because I'm not
sure I got, and then I'll shareit in our episode notes.
And it sounds like something Icould use.
Speaker 1 (46:06):
Yeah, absolutely, but to to piggyback on what Dana
was saying, while there's nocure at this time, like Dana
said, taking care of our brainis so incredibly important.
The brain health is also tiedto your gut health, to your
heart health.
These things, these systems ofthe body, are all playing
together.
So eat a lot of vegetables.
(46:28):
y'all you know eat vegetables,move your body and be nice to
yourself, because when we thinkabout the way we talk to
ourselves through all of ourwaking hours, don't we think
that plays into who we are atsome level?
If we are consistently tellingourselves we are not enough,
we're not doing enough, we'renot showing up enough, don't you
(46:49):
think that matters?
I tell myself things likeyou're amazing, jessica, you got
this, you can do this.
I'm so proud of you and Iactively work to do that.
That's why I am the way that Iam.
It's not that I was born likethis.
If I just let my mind be as itwas, I would be like my mom and
be stressed, burnt out, nevertaking rest, and so getting more
(47:13):
of a control over that habitualself-talk really matters and
plays into our overall healthand wellness.
Speaker 4 (47:21):
Okay, we're going to wrap up, but we always ask our
guests I hope you guys saw thisin our email for two takeaways.
I mean, that was a great one,jessica.
If you want to mention it again, you can, but we like maybe
each of you give us one that youhope our listeners leave this
episode with what would otherthan buy the book?
You can't say buy the book ordownload the book.
What do you want them to take?
Speaker 1 (47:41):
away.
I'll go first.
So I want you to take away thefact that everything is
temporary, and why this isimportant is because
impermanence shows us two thingsOne, that the hard stuff, the
uncomfortable stuff, the stuffthat we really don't like, the
icky feelings, are not going tolast forever.
But neither are the happythings, neither are the joyous
(48:02):
moments, neither are the amountof sunsets that we see.
So allow impermanence and thefact that everything is always
changing to let you see that youcan get through the harder
times and let you see to reallyembrace the times that feel good
.
I love that.
Speaker 5 (48:20):
Okay, Dana, you're on .
Communicate, Just have hardconversations, have the scary
conversations.
Have them often.
Your kids are not too young totalk about it.
Your loved ones are not too oldto talk about it either, and
it's going to be scary.
But it's also scary to not knowany of that stuff.
So be proactive, take controland just talk.
Speaker 4 (48:43):
Love that.
Thank you both so much.
We really enjoyed this.
Speaker 1 (48:47):
Thank you.
Yeah, this was a pleasure,right.
Speaker 3 (48:51):
Thank you guys.
Speaker 5 (48:52):
So great to talk.
Speaker 3 (48:54):
Well, that's a wrap.
This was one of thoseexperiences that I think we're
all going to experience at onetime or another.
We want to be prepared.
We see that about so manydifferent times of our lives and
here they're giving us thismanual.
They talk about everything.
I know that it is driven byAlzheimer's.
It is more than that.
That's in this book.
There's just invaluableinformation for everybody.
(49:15):
Please check this out.
Go at the Alzheimer Caregiverswebsite at
alzheimerscaregiversorg.
They just published a freeguidebook that walks readers
through each stage of thedisease and how to provide the
highest level of care.
There's so many resources inthis book.
I hope that you'll check it out, and thank you so much to
Connie Gorant-Fisher, our audioand production engineer, who
(49:36):
helps make everything look andsound fabulous.
And write to us atbiteyourtonguepodcast at
gmailcom.
Please share your comments andideas Ideas, ideas, it is and
please consider supporting ourefforts by going to our website,
biteyourtonguepodcastcom, andbuying us a virtual cup of
(49:56):
coffee.
Don't forget to follow us onFacebook and Instagram, and
remember, sometimes you justhave to bite your tongue.
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