September 8, 2025 • 46 mins
What if you could communicate telepathically with someone living with advanced Alzheimer's? Dan Goerke discovered this extraordinary connection with his wife Denise after conventional conversation became impossible. In this episode, Dan reveals how their mental bond transformed his caregiving approach and ultimately led him to become a powerful advocate for Alzheimer's research.
Perhaps most touching is Dan's compassionate philosophy: "Let her do it." When Denise would wander the neighborhood with scissors, pruning neighbors' flowers without permission, Dan instructed caregivers not to stop her. Rather than imposing restrictions, he recognized these creative moments brought her rare joy in a disease that progressively steals happiness. This perspective offers a powerful lesson for all caregivers—sometimes the greatest compassion lies in allowing freedom rather than control.
From following behind his wife's car to detect unsafe driving patterns to navigating bathroom challenges with humor and patience, Dan's honest account of caregiving's frustrations and unexpected gifts resonates deeply. His journey from anger to advocacy demonstrates how channeling emotion into action can create meaningful change not just for one family, but for millions affected by Alzheimer's.
Ready to transform your own caregiving approach or join the fight against Alzheimer's? Visit alz.org to discover advocacy opportunities, find Dan's book "Unforgettable, Unbelievable" on Amazon, or connect through his Soul to Soul Communication website for telepathic services that might help you bridge the gap with your loved one.
Executive Producer / Host: J Smiles
Producer: Mia Hall
Editor: Annelise Udoye
"Alzheimer's is heavy but we ain't gotta be!"
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
We're diagnosing Alzheimer's the equivalent of
diagnosing someone with cancerat stage four.
There's really, yes, you canmake them comfortable, but
that's so late in the game.
Speaker 2 (00:13):
All right, hold on, hold on.
You gotta pause.
I need everybody to digest this.
You determined, okay, that's it, she can't drive anymore
because you were following herto aqua aerobics or aqua fit
class.
Yes, I thought that is so cool.
You weren't driving in the carwith her, you weren't making her
(00:40):
watch you drive, you actuallylet her drive but followed her
multiple times so that you coulddiscern this is actually
starting to decline in a way.
That's not safe.
So therefore, your decision I'msure became it was more
(01:01):
emphatic that it had to happenbecause, as you stated in the
book, I think you said youcounted six or seven traffic
violations just in going about amile from your home and I
thought, oh, okay, and you'renot a police officer, so if you
counted six, a police officermay have counted 12.
Example that you gave with yourwife on how she liked to walk
(01:29):
around the neighborhood this iswhen the disease was advanced,
but obviously she could stillwalk and she would take scissors
and she would prune theneighbors' flowers.
Now, the neighbors did not askDenise to prune the flowers, but
because she loved flowers andshe thought they'd make she was
(01:51):
gonna make them more beautiful.
And a caregiver contacted youto say, oh my goodness, she's
out here with scissors,chocolate paper, what am I
supposed to do?
Your response was Let her do it.
Let her do it.
Let her do it, let her be happy, let her have her happiness,
and that's what made her happy.
(02:13):
And parenting up.
Caregiving adventures withcomedian J Smiles is the intense
journey of unexpectedly beingfully responsible for my mama.
For over a decade I've beenchipping away at the unknown,
advocating for her and pushingAlzheimer's awareness on anyone
and anything with a heartbeat.
(02:34):
Spoiler alert this shit isheavy.
That's why I started doingcomedy.
So be ready for the jokes.
Caregiver newbies, ogs andvillage members just willing to
prop up a caregiver.
You are in the right place.
Hi, this is Zeddy.
(02:56):
I hope you enjoy my daughter'spodcast.
You double K podcast.
You double K.
Today's supporter shout outcomes from Instagram.
The underscore distinguishedsilver beard.
I'm so happy for you and theentire team.
(03:17):
Congratulations on this verygreat achievement.
They're praying hands.
There's a high five, the high10 hearts, kissy face emojis, a
(03:40):
bunch of firebombs and applauseclaps Amazing.
Thank you so very much.
I think that was in referenceto us going on tour in Detroit
and doing our three part serieswith Wayne State NIH.
Dr Detroit aka Dr McNeil.
It was such a great time.
Now, if you want to be therecipient of a supporter, shout
out.
You know what to do.
Leave a review on Apple podcast, youtube, instagram or in our
(04:06):
text community.
All right, until next time.
What's up, family?
It's your girl, jay Smiles.
We're here with a reallyexciting episode.
I know, I know, you're like Jay.
You say that every damn time.
It's not my fault.
The Alzheimer's gods are like.
(04:26):
You know what?
If you got to go through thisdreadful disease?
What we're going to do, jay, iskeep plugging you in to hot
guests Now, I don't mean hotlike sexually hot.
Maybe they're sexually hot, butI don't know about that.
I can promise you I haven'tslept.
Let me make sure.
Yes, I have not slept with anyof my guests thus far.
(04:48):
There is one in my head, though, that I'm trying to get him on.
We'll talk about that later.
Ok, anyway, fast forward backto today, today's guest.
What's so exciting is this dudeis a caregiver you know, once a
caregiver, always a caregiver,an advocate, and he went so hard
(05:09):
in the paint that theAlzheimer's Association said hey
, hey, hey, come over here andjoin our team.
Like, he has business cards,from being a caregiver to having
business cards, to going toCongress, to legislating what.
So here's my man, dan Gerke.
(05:32):
It rhymes with turkey.
It doesn't have a U in it,though, which is very, very
strange.
I like to call him Gerke, butit's wrong.
So if you're thinking that whenyou see it spelled, don't do it
.
Rhymes with turkey.
Speaker 1 (05:45):
That's why I say just call me Dan Right, keep it
simple.
Speaker 2 (05:49):
See what I'm saying.
He has a sense of humor.
How you doing, dan, awesome,awesome, great to be here.
Thank you so much.
This guy is so well plugged in.
We are actually right now inthe office of the Alzheimer's
Association for the state ofGeorgia.
That is a really big deal.
So thank you so much, dan, formaking sure that we had access
(06:13):
to this space, because there isan energy and a vibration that
exists here that doesn't reallyexist anywhere else in this
state.
Speaker 1 (06:21):
Yeah, it's a very positive vibe here.
We're all optimistic aboutwhat's going on in the world of
Alzheimer's.
We've hit some milestones andturned the corner on several
initiatives and we're realexcited yeah.
Speaker 2 (06:35):
Yeah, yeah.
So we're going to get into whyDan is super special.
That's what I'm about to doright now, people.
So Dan has been a caregivermore than once and his wife, who
is no longer in a physicalhuman form, had Alzheimer's and
(06:57):
Dan was her primary caregiver.
But Dan had a unique way ofcommunicating with his wife that
I found simply fascinating.
And in a moment we want to getto that when I like to start on
all our conversations, becauseso many people are really new to
(07:20):
caregiving and they're not sureif their loved one is just
aging or is this possibly adementia-related disease.
So, with your wife, what causedyou all to say you need to go,
we need to go to the doctor?
Speaker 1 (07:38):
Yeah, yeah, and we struggled with that for a while.
She was in her early 50s and ofcourse at that age Alzheimer's
was the last thing we weresuspecting.
But she was displaying a littlebit of memory issues, but it
was more her inability to cometo decisions about things and
(07:59):
getting confused.
That was the biggest issue.
She was getting confused.
So I said let's go into yourprimary care doctor, and we did.
And the way she was describingthings, she said I wasn't
sleeping well at night and helatched onto that.
So he referred us to a sleepspecialist way too long, for
(08:28):
about a year and a half, almosttwo years.
And guess what?
She kept getting sicker andsicker and more confused and
losing her memories.
And I'm like all these pillsand therapies and machines are
just not cutting it.
So we went to a neurologist,finally that specialized in
memory issues and within aboutsix months, because of all the
(08:48):
testing that went on, he cameback and said do you have
Alzheimer's disease?
This was when she was 56.
That's crazy, oh, and you knowwhat it did?
Two things it explained a lotof what was going on.
It's like, oh, that makes sense.
But there was also the bigshock factors like how can
(09:09):
somebody 56 have Alzheimer's?
Speaker 2 (09:11):
I had no idea, and that began our journey with the
disease at 56 years old forthose of you who are viewing it,
you can see we have a book heretitled Unforgettable
(09:32):
Unbelievable.
Just in case unforgettablewasn't enough, it was also
unbelievable A Journey ofTelepathy and Compassion in
Alzheimer's Care.
Now we're going to get intowhat all this title means and
(09:54):
what it holds inside of it.
But, dan, in reading your book,what resonated most with me is
how honest you are about beingmad.
There are a lot of people inthe caregiver space.
They write something Maybe it'sa blog, it's a book and they
speak more of just shock andsadness.
(10:17):
But you were like I was pissed,and I was like this is my guy.
I was also pissed and itappears your wife, denise, she
was also pissed.
And speak to those emotions andinitial frustrations on behalf
of both of you, because I don'tknow that that gets enough
(10:41):
airtime.
Speaker 1 (10:43):
Yeah, and, as you know, there's a range of
emotions that come up as acaregiver, as a person living
with the disease, and I justwant to stress it's so important
(11:07):
to be able to do and used to beable to do seamlessly and
excellently.
Driving is the most pertinentexample of you know, she was
just.
I want the freedom to go outand do whatever, wherever I want
to go, whenever I want to go,and when it finally got to the
point where I had to take awaythe car keys oh my gosh, we are
talking about World War III atthe house and it would come and
(11:30):
go for a while, but it was sodifficult Seeing the anger.
I knew why she was angry and itmade complete sense, but yet it
was so hard to deal with thattoo, because it's like I cannot
give you the keys, and that wassuper frustrating and caused me
(11:52):
to be angry at the disease.
I remember telling myself goingthrough this journey either you
can't get, you can't get, don'tget mad at Denise, get mad at
the disease.
And that began my journey ofdon't get angry, do something
for that.
And that began my role as doingsome advocacy.
(12:16):
Going to Washington DC, Peopletold me you need to write a book
because there's so many greatstories.
I wrote the book with theintention of getting it out
there to the caregiving world,to the caregivers, so that they
could see this is what this is.
This is a disease like no other, and there are better ways to
do it than just not recognizingyour emotions, not recognizing
(12:40):
what's going on.
Just please get out there,recognize what's going on and
get help.
That's one of the reasons Iwrote the book.
Speaker 2 (12:47):
I'm happy you wrote the book.
Speaker 1 (12:48):
Thank you.
Speaker 2 (12:50):
You had a technique that I haven't I don't know, at
least I haven't heard of it much.
I feel like this is the firsttime I have been made aware of
this.
You determined okay, that's it,she can't drive anymore.
Because you were following herto aqua aerobics or aqua fit
(13:13):
class.
Speaker 1 (13:13):
Yes.
Speaker 2 (13:15):
I thought that is so cool.
You weren't driving in the carwith her, you weren't making her
watch you drive, you actuallylet her drive but followed her
multiple times so that you coulddiscern this is actually
(13:38):
starting to decline in a waythat's not safe.
So therefore, your decision,I'm sure became it was more
emphatic that it had to happenbecause, as you say in the book,
I think you said you countedsix or seven traffic violations
just in going about a mile fromyour home and I thought, oh OK,
(13:59):
and you're not a police officer,so if you counted six, a police
officer may have counted 12.
Speaker 1 (14:04):
He only needed one to pull her over.
Speaker 2 (14:06):
Right, exactly, but just as a technique to everyone
in the parenting up community, Iwant to give that as an example
of when you're 10 toes down andleading with compassion around.
She's angry.
She wants to keep driving.
(14:31):
To the extent I can, let herkeep driving, I will.
And you came up with a strategythat could then inform your
heart and your mind of whenenough is enough.
So I needed to state thattechnique because I was like,
yeah, just drive behind her.
Why isn't that like on all thecommercials?
(14:52):
This is what you should dobefore you take your person's
keys, because then you know fora fact, let's you know, give me
the keys.
It's time to move on.
Um, another very uh, becausethis was I'm a comedian.
A hilarious uh point that youdescribe is um, there was a
(15:15):
moment where there were loosevowels and you were trying to
get her to sit down, mm-hmm, andshe was trying to leave Right.
The way you describe thefrustration that you are having
with each other and you don'teven have a chance to put gloves
(15:37):
on Right.
Share a little bit about thehumorous side of that now
looking back on it, or even inthat moment after you got
through it.
Speaker 1 (15:50):
Yeah, I think so much of that was about taking deep
breaths.
Often and frequently she justhad an issue she had diarrhea
and I had to get her cleaned up.
She had diarrhea and I had toget her cleaned up.
And at the stage of the diseasethat she was at, she just was
having difficulty understandingwhat was going on.
(16:12):
And I had her there in thebathroom and you know, all the
while trying to take off herDepend diaper, get something to
clean her up with.
And yet in her mind, she said,was saying to herself I could
(16:36):
almost hear her say I got to getout of here.
This is a bad situation, right?
I've got diarrhea, I've got toleave and go somewhere else when
she was going, who knows whoknows Away from this, though.
Speaker 2 (16:44):
This is messy, it smells and I don't want any part
of it.
Speaker 1 (16:46):
Exactly, exactly, and I even don't want this guy near
me, right?
So it was, and I kept tellingmyself.
I realized that that's whereshe was in her mind and that I
just had to keep going with theflow, try and calm her down.
And I did it was.
It took a while, it took awhile, but we got there and I
(17:08):
was able to get her in theshower, which she loves showers.
So I kept.
That was my carrot, let's getyou in the shower.
You love taking showers andfeeling that water on you.
So that was my carrot to gether in the shower.
And it all worked out.
But oh my gosh, I didn't keeptrack of the time, but I want to
say it was probably close to anhour in there with her.
(17:28):
It felt like the walls wereclosing in on us, but we got
through it.
Take deep breaths.
Speaker 2 (17:34):
You got to take deep breaths, goodness knows.
I've had some of my owndiarrhea moments with mom and
you're looking at the adultbrief and you're thinking did
this thing work at all?
She could have just had onregular pants, she could have
just been sitting here withnothing on and we could have
just let it go everywhere,because I feel as though this
(17:56):
didn't absorb anything.
Give me my money back.
At a minimum, give me my moneyback.
This didn't meet myexpectations.
Your um moment, uh, where yousay talk to me now.
I'm jumping around verypurposely, family on the book,
(18:17):
because you're gonna need to goget the book and buy the book
for yourself, right, and?
And dan has so much uminformation that I want to get
to in this episode that I I'mtrying to hit at least what
touched me the most, sure.
So there's a moment, momentwhen there's a chapter that you
(18:38):
call it Talk to me and you are,you're frustrated.
You speak on being frustratedbecause your wife's disease has
advanced to the point where youcan't verbally really connect
with her.
She's in the bed.
You finally come from the denwatching TV, you get in the bed.
(19:04):
Tell us what happens.
Speaker 1 (19:06):
Yeah, she was at a point where it was very
difficult for her to communicateanything A few words here and
there, but certainly you'd askher a question and she could not
verbalize her answer.
So, yeah, tough day got her tobed.
Thankfully she slept reallysoundly and through the night
most nights.
And so I come to bed completelydrained, frustrated from the
(19:31):
day, both with her, with thedisease and at work, and had
been having trouble getting herprimarily in the bathroom.
Trying to go to the bathroomcould sometimes take up to an
hour just to get her on thecommode.
Crazy.
And I was laying there wideawake she's asleep.
(19:52):
And I said in my mind.
I said, said to myself denise,this would be so much easier if,
if you could talk to me.
I immediately heard her voice,the intonation and and sound of
her voice in my head say talk tome.
And I'm like is she asleep?
Speaker 2 (20:17):
And she's asleep.
Okay, Was this the 70s LSDinvolved?
What's going on here?
Speaker 1 (20:21):
Dan, no drugs, okay Okay.
A couple of glasses of wine, ohyeah, it doesn't count.
Caregiver's necessity there.
Speaker 2 (20:29):
Yes, absolutely Okay.
Speaker 1 (20:31):
So we all have a prescription for red wine,
Exactly so, no drugs involved.
Heard her say talk to me and Isaid I immediately accepted that
that was her talking and I saidokay, how do I get you on the
commode?
Easier Easier for both of us,Because she was struggling.
Speaker 2 (20:51):
She was mad at me, Now is this only in your mind,
only in my mind.
Are you starting to talk outloud?
Speaker 1 (20:56):
Nope, I'm talking in my mind.
Every bit of this is in my mind.
And I said show me how to getyou on the commode so it's
easier for both of us.
And she starts putting picturesin my head about what to do.
And she says put one arm on myshoulder, one arm on my hip,
(21:16):
push gently here, turn me thisway, do this, do that.
And I thought to myself well,okay, sure, so I'm anxious.
The next morning I wake up likewho is anxious to get their
loved one into the bathroom.
Speaker 2 (21:34):
I can't right.
I can't wait to try this.
I can't wait.
I can't wait.
I want to see if I pass thetest.
Did I study well, yeah?
Speaker 1 (21:41):
So I get her up, we'd walk into the bathroom.
I do exactly what she hadshowed me through my mind Okay,
and it was, it was a matter of60 seconds.
And she's sitting on thecommode and I'm like matter of
60 seconds.
And she's sitting on thecommode and I'm like, yes, yes,
it worked.
And she looks at me.
She goes get out, like I'mdoing, I'm like the NFL football
(22:03):
player in the end zone andshe's like what is this idiot
doing?
Speaker 2 (22:07):
Right?
Well, you know what.
The celebration is no longerallowed, so you got a penalty
right.
All of that showboating is notnecessary then.
Speaker 1 (22:15):
Right, well, I pushed it a little far, so that was
proof of that.
I heard her and that she wascommunicating, and it just it
went to other places ofcaregiving, getting her in the
car, asking her what she wantedto eat, what she didn't want to
do, where she wanted to go,things like that.
Speaker 2 (22:36):
That's where the telepathy comes in everybody.
In the book title Was this yourfirst experience with telepathy
?
Speaker 1 (22:52):
Yes and no.
I had been on a I guess youcall it a spiritual,
metaphysical journey for acouple of decades, doing
different modalities likeshamanic breath work, meditation
.
I still meditate every singleday and I have for, wow, 20, 30
years.
Okay, that explains your chill.
(23:13):
Ok, and so that explains yourchill.
Speaker 2 (23:15):
Ok, listen, how many times.
Ok.
Parents and family, howsalesperson than I could be.
Okay, keep going.
Speaker 1 (23:47):
So I had been open to this kind of work in the past.
I was not expecting it, yet Iembraced it.
I said this is going to be agreat method to communicate so
that I could be a bettercaregiver for her and make her
happier and make our lives alittle bit easier Not easy.
There's very little easy withthis disease as a caregiver or a
person that has it, yet it wasgoing to make our lives easier.
(24:08):
Yeah, I love that.
Yeah, so meditate, that's rightMeditate.
Speaker 2 (24:12):
Meditate, we must meditate, that's right.
Meditate, meditate, we mustmeditate.
Your continuation with how youwere able to communicate with
your wife.
Now, first, it speaks to theconnection of the two of you,
because I know some people theycould ask questions.
(24:34):
All they want to and allthey're gonna get back is I know
you're not fucking asking menothing, I'm not telling you
shit, it's probably what day weget back, but it speaks to their
relationship.
Um, in advance of the disease,and how much you all were
walking through the journeytogether attempting to say, hey,
(24:56):
we're going to face this headon, do the very best we can.
So I want to congratulate youon staying 10 toes down, facing
the fire that's not at all easyand then to embrace that what
you were hearing was really fromher and to at least try it.
(25:16):
So, family, that's what I wouldlike to say.
If you, if you're, whether youdirectly say your loved one's
name, if you're putting in theform of a prayer or just a
frustration outburst, whatevercomes back next, as the next
thought you have in an answercould be from another realm or
(25:40):
could be divine, it couldactually help and not just be a
random thought floating betweenyour ears.
Speaker 1 (25:49):
Absolutely so.
Speaker 2 (25:49):
that's just my little deposit right there.
Thank you for that.
Absolutely, that's just mylittle deposit right there.
Speaker 1 (25:52):
Thank you for that Absolutely, because a lot of the
messages that we get back, evenif we aren't used to telepathic
communication, you know, youmay be thinking oh hey, I wonder
if my mom would like some icecream.
Well, okay, in my world that'sher communicating to you that
she would like ice cream.
(26:13):
That's just not a randomthought.
Speaker 2 (26:15):
Yeah, because what made me even think of ice cream?
Speaker 1 (26:17):
Exactly, exactly, you know what that happened.
Speaker 2 (26:20):
The other night my podcast team and I went.
We had a bit of a celebrationdinner and I purposefully did
not finish my dessert.
It was very good, but halfwaythrough I thought I wonder if
Zeddy would like this and I juststopped eating.
(26:41):
I took it home.
I kid you not, I get home,she's on the toilet, we eat on
the toilet, it's no problem.
I have actually fired a coupleof caregivers that were like I
don't want to give her water orany snacks on the toilet, it's
no problem.
I have actually fired a coupleof caregivers that were like I
don't want to give her water orany snacks on the toilet and I
was like, okay, cool, no problem.
So here's your purse.
(27:01):
Nobody asked you what youropinion was.
Right, I had.
It was, um, blood orangecheesecake.
Very good, I had it, I got it.
You know I, I got scoop.
I have it on the fork.
I give it to her.
She opens her mouth as wide aspossible.
So now you know there's nofighting of swallowing.
(27:23):
She chews it.
She's nodding her head, yes,and kind of smiling at me.
I put the fork down by my side.
Then her eyes followed the forkdown to my side, as if to say,
is there some more down there,like where is the next spoon?
And I was like, all right, shelikes it.
(27:44):
Okay, cool, this is a good idea, jay, absolutely, so I hadn't
thought about that.
But so small moments, where dothose thoughts pop in?
So I love it.
That's fantastic.
(28:16):
You spoke about that.
Anger of the disease led youinto advocacy.
That I got out of your book wasmaybe in 2012, 2013,.
Unpaid caregivers accounted forapproximately $235 billion.
Yes, a decade later, when youauthored the book, it was $340
billion.
So it's more than another $100billion of what unpaid
(28:39):
caregivers are giving to thesystem and or losing for
ourselves.
Give us your thoughts on that.
Speaker 1 (28:49):
Yeah, that was boy.
And in case your viewers don'tknow, advocacy is a fancy word
for lobbying.
Speaker 2 (28:57):
Yes, okay, that is right.
Speaker 1 (28:58):
We're going to politicians and I had my doubts
as to whether that was going tobe effective or not and I
thought, well, let's give it atry.
So, and as advocates for theAlzheimer's Association, and
when we go to Congress andCongress people, we're given
this information.
And I saw that statistic aboutthe $235 billion that was being
(29:22):
spent by caregivers.
I thought that is, that'sinsane.
Yeah, that's a crazy number.
It's stupid.
Speaker 2 (29:32):
Why are we spending that and where are we?
Speaker 1 (29:34):
getting it from?
Yeah, exactly, exactly.
Speaker 2 (29:37):
I would like my part of the two hundred and thirty
five billion back.
Actually, yeah, it's a taxrefund.
What's going on?
Yeah?
Speaker 1 (29:44):
exactly, and so that was criminal to me.
So I said we got to dosomething to fix that, and I
have learned that the way to fixthat is well, let's get rid of
this disease.
Yes, okay, back that up.
How do we get rid of thedisease?
Through research, throughfunding research that is going
(30:04):
to come up with a treatment,with a cure, with whatever.
Anything, please, because in2012, we had two medications
that were given that were reallyineffective, quite frankly, and
I had also heard that, becausethe funding level at $500
million at the NationalInstitutes of Health were so low
(30:25):
that researchers in theAlzheimer's world were leaving.
They were going to otherdiseases because there was no
money in it.
Speaker 2 (30:32):
Hold on one second, yeah.
Speaker 1 (30:34):
Hold on one second, believe it.
Speaker 2 (30:36):
You're telling me in 2012, the only amount that we
had in the National Institutesof Health, otherwise known as
NIH, which is the major federalarm of continued research.
I want the parenting communityto realize we can't count on
(30:58):
private industry to continueresearch.
They may research whatever'shot, whatever drug or disease
they think will give them aprofit for that decade, but it's
NIH that does research overfour, five, six, seven, eight
decades, over two or threepeople's whole lifetimes, so
(31:20):
that we can have real data.
Exactly $500 million.
That was it.
You could blow through that inlike a week, oh easily.
Speaker 1 (31:28):
In research and we were looking at other diseases
and you know, cancer was up at 4billion, 6 billion, heart
disease 6 billion, and great,Great.
We needed that level ofresearch on those diseases.
And guess what we were?
We, as a country, we weremaking progress, we were coming
up with therapies for heartdisease and cancers and we're in
(31:51):
this world of Alzheimer's wherethere really are no effective
therapies and we said that's notright.
That's not right.
So what we've been able to dothrough those advocacy efforts
over the past 12 years, we tookthat $500 million and we said
this is not enough.
We went to DC year after yearafter year, telling our stories
(32:13):
of our loved ones who had thisdisease and why it needs to stop
.
We've raised that to almost $4billion in that 12 years.
We're at $4 billion now, whichis great, which is awesome.
Speaker 2 (32:27):
That was a high five smack clap.
What that is unheard of.
Speaker 1 (32:31):
So now researchers are flocking to this world.
Private companies are doingmore and more to come up with
therapies from a cure.
Prevention Blood test now hasjust been approved by the FDA.
We are at a turning point inthat research effort.
Speaker 2 (32:51):
Tell us a little bit about the blood test.
Speaker 1 (32:52):
Yeah, yeah.
So this is exciting, and Iremember hearing about this
again back in the 2012, 13, 14area of that a blood test was
needed.
A blood test was needed becausewhat we're doing right now is
we're diagnosing Alzheimer's theequivalent of diagnosing
someone with cancer at stagefour.
Speaker 2 (33:14):
There's really yes you can make them comfortable,
but that's so late in the game.
All right, hold on.
You got to pause then I needeverybody to digest this.
So I need everybody to digestthis.
(33:41):
Prior to the blood test, whichmeans for Zetty, for Dan's, was
always, 100% of the time, alwaysequivalent to stage four in a
specific cancer.
And and how many times has yourheart just sank to your ankles
when you heard about, oh, mygoodness, it's cancer, what
(34:04):
stage?
The very next thing you saywhat stage is it?
And as long as you don't hearfour there, I'm getting
goosebumps.
There's hope.
There's hope in the in the room.
Yeah, oh, it's one is two, okay, three, okay, at least it isn't
four.
But what we have been fightingand combating I'm so grateful
(34:25):
for that.
Uh analogy you're giving isshit.
Speaker 1 (34:29):
We're starting off at stage four we're starting off
in a bad place.
It's only going to get worse.
But this blood test, blood testis a game changer, because now
we we buy a simple blood testbecause you may have gone
through this with with your momtoo is the way Denise got
diagnosed was through a lumbarpuncture, spinal tap.
(34:51):
Well, that's pretty invasive,that's pretty tough.
You're laying there andsomebody's sticking a needle
this far into your spine.
Speaker 2 (34:59):
Ouch, yes, and a person who doesn't know how to
be still doesn't reallyunderstand because, um, if I'm
not mistaken, with lumbarpuncture, you're not sedated.
That's what I recall.
So then you're.
You're trying to explain whatthis is.
You can't tell somebody withalzheimer's don't move.
You have a a great don't movestory in this book.
(35:21):
Hey, I just want anybody, onceyou get it, when you get the
don't move, please dm me andtell me write in the comments
how y'all feel about the Don'tMove story.
I'm not going to go down thatone, but that was hilarious,
yeah.
Speaker 1 (35:32):
Yeah, yeah.
So the diagnosis is veryinvasive right now, yes, and the
blood test is so much simpler,obviously, you know, prick your
finger, test the blood anddetermine whether you have
Alzheimer's or not, and whatthat does is allows us to get in
earlier in the disease process,and I think I'll lay out the
(35:55):
vision.
The vision I would love to seethis I hope we see it in our
lifetimes is that you're in your20s and 30s.
You get the blood.
The doctor says, hey, it's timefor your Alzheimer's blood test
.
And you go okay, you get theblood test.
Doctor comes back and says, hey, you're probably going to
develop Alzheimer's disease inyour whatever 60s, 70s.
(36:17):
Yet here here's a set of pills,shots, whatever therapy.
Start taking this now, whenyou're in your 20s, and you will
not get Alzheimer's.
Speaker 2 (36:28):
Vaccine Right.
Some version of Alzheimer'svaccine supplement cocktail.
Speaker 1 (36:34):
Early on.
Speaker 2 (36:35):
I will take mine now.
Yeah, okay, so whoever'slistening to this in Congress,
go ahead and approve the nextstep, okay.
So I can go on and pop a fewpills.
Speaker 1 (36:44):
Absolutely.
Oh my goodness, that's thevision, that's what we want.
Speaker 2 (36:47):
Well then, that's what we want.
That's the vision I'm going to.
We're going to telepathize.
I made that part up.
I'm sure that's not really aword with Congress.
It's a lot of them.
We got to pick somebody thatmight give it back with us.
Don't just go to everybody inCongress trying to do it.
I don't think they could sendback some bad energy.
We don't want to do that.
Dan, this has been such afruitful and exciting
(37:14):
conversation.
I'm not really ready for it toend, but you know the time and
the clock is saying it is timeto wind down a little bit.
To wind down a little bit.
(37:36):
But before we do, I want togive you another set of kudos.
I guess there was an examplethat you gave with your wife on
how she liked to walk around theneighborhood.
This is when the disease wasadvanced, but obviously she
could still walk and she wouldtake scissors and she would
(37:58):
prune the neighbor's flowers.
Now, the neighbors did not askDenise to prune the flowers, but
because she loved flowers andshe thought she was going to
make them more beautiful.
And a caregiver contacted youto say oh my goodness, she's out
here with scissors chopping uppeople's lawn.
(38:19):
What am I supposed to do?
And your response was Let herdo it.
Speaker 1 (38:25):
Let her do it.
Let her do it, let her be happy, let her have her happiness and
that's what made her happy andyou wouldn't believe the end
results.
I would come home and theseflower arrangements that she had
were beautiful.
I would start taking picturesand send them out and put them
on social media.
Look what Denise did today.
It was just unbelievable.
(38:46):
Yeah, you do not want to stopher, and she got to the point.
It wasn't just walking alongthe street, she would walk up in
people's driveways.
Speaker 2 (38:54):
Did any neighbor ever say anything?
No, no See what I mean.
Speaker 1 (38:59):
It's like let them do it.
And that was kind of myphilosophy is like you know, she
got a bad rap, she got a baddeal, Let her do whatever she
wants.
So I like that we did.
Speaker 2 (39:10):
I like that.
Yeah that's.
I think that's a fantastic wayto end this part of the
conversation.
The book is Unforgettable,unbelievable a Journey of
Telepathy and Compassion inAlzheimer's Care.
Now Dan also speaks quite a bitabout his father and additional
(39:34):
telepathy.
But I knew if I went into thatwe would be here two days.
So I wanted to just I say OK,you know the best thing if I
really go deep on his wife.
But the telepath they startedwith his father after his father
passed.
So I found it fascinating thatwith Denise she was still alive
(39:57):
and with your father he hadpassed.
But the point is, if you areleaning into intuition, if you
are leaning into intuition, itwill help and you can be led in
your journey as a caregiver.
When you think you don't havethe answers, perhaps your loved
one can send it to you.
(40:17):
So stop sometimes freaking outso fast.
Just give them a moment.
Give a moment, dan.
Where can we get this book?
Where can we contact you as itrelates to assisting in anything
related to the Alzheimer'sAssociation being an advocate?
Speaker 1 (40:37):
So the book is on Amazon.
I have a website called Soul toSoul Communication and I offer
the telepathy service to othercaregivers so I can contact your
mom, someone else's parent,whoever else, to offer those
same kind of tips, so they cantell me messages.
(40:57):
So I offer that service inthere.
On soul-to-soul communication,I do advocacy work.
I would encourage anyone who'sabsolutely even the slightest
interest in doing advocacy orfundraising for the Alzheimer's
Association to go to alzorg andtake a look on the website.
(41:18):
It's beautiful.
The Walk to End Alzheimer's iscoming up here in Atlanta in
October.
I'd love to have you join usthere as well.
So there's a variety of ways toget involved.
Speaker 2 (41:31):
The Parenting Up community.
We will be there.
We might even be there, youknow, with lights and a camera
and shake some things up andmake some noise.
Speaker 1 (41:40):
Love it.
How about that?
Speaker 2 (41:42):
Awesome, all right.
Speaker 1 (41:42):
And I'll see you there with our representative
too.
Right, we're going to gotogether.
Speaker 2 (41:46):
Representative Nakima Williams.
We are going to continue theadvocacy.
Dan has been so kind as to sayhe will allow me to kind of ride
his coattails and just jumpright on to his lobbying team,
which means I don't have tostand outside and watch, and I
am grateful, I'm grateful, I'mso grateful, thank you.
(42:08):
Thank you Absolutely, thesnuggle ups.
Number one caregivers, you canbe angry, you can be pissed at
the disease, from the day yourLO is diagnosed all along and
(42:29):
the day they die.
It's okay, you got the right tobe mad.
Avoid taking that anger out onthe person with the disease.
They deserve it the least.
If you think you mad, you'regoing to have to get in line
(42:52):
behind them.
It's okay.
Let that emotion out.
Number two Like Dan said, lether do whatever she wants.
If what your LO is seeking todo is not gonna cause chaos or
calamity, if it's not about tokill somebody or make somebody
(43:14):
go to jail, let him do it.
He let her go and prune flowersout of everybody's yard and
make special bouquets.
No neighbor said anything.
Now some of y'all might saywhere'd they live?
That must have been some hippiewhite folk commune neighborhood
(43:35):
.
I don't know.
That's doubtful.
This is the point.
Go ahead and try it, becausethere's so few things that can
make a person with dementiaactually have a moment of joy,
and then that moment of joy itmight only last another couple
(43:58):
of months before the diseasesnatches that happiness from
them.
So so let them do it.
If they want to walk around incircles for what you think is no
reason, don't stop them.
If they want to cut flowers outof the neighbor's yard, what
the hell?
What's the old saying?
(44:20):
Don't ask for permission, askfor forgiveness after you do it.
Y'all feel what I'm saying.
Number three consider becomingan advocate in some form or
fashion for this disease.
If any part of you bubbled upwith the damn, I ain't know that
(44:43):
, it's that many caregivers,it's costing that much money,
it's that little researchdollars, if any of that struck
you as unreasonable, unfair orwrong, consider being an
advocate.
And, like Dan said, in thisspace, the word advocate means
(45:08):
lobbyist.
You can lobby on a federallevel, you can lobby on a local
or state level, no matter whereyou live and how you are hearing
or seeing this, it's somelobbying going on.
You can go to ALZorg to getstarted.
If that doesn't work, holler atyour girl and we'll help you
(45:30):
find the right place.
Thank you for tuning in.
I mean really, really, really.
Thank you so very much fortuning in, whether you're
watching this on YouTube or ifyou're listening on your
favorite podcast audio platform.
Either way, wherever you are,subscribe, come back.
(45:50):
That's the way you're going toknow when we do something next.
Y'all know how it is.
I'm Jay Smiles.
I might just drop something hotin the middle of the night.
We're diagnosing Alzheimer's the equivalent of
diagnosing someone with cancerat stage four.
There's really, yes, you canmake them comfortable, but
that's so late in the game.
Speaker 2 (00:13):
All right, hold on, hold on.
You gotta pause.
I need everybody to digest this.
You determined, okay, that's it, she can't drive anymore
because you were following herto aqua aerobics or aqua fit
class.
Yes, I thought that is so cool.
You weren't driving in the carwith her, you weren't making her
(00:40):
watch you drive, you actuallylet her drive but followed her
multiple times so that you coulddiscern this is actually
starting to decline in a way.
That's not safe.
So therefore, your decision I'msure became it was more
(01:01):
emphatic that it had to happenbecause, as you stated in the
book, I think you said youcounted six or seven traffic
violations just in going about amile from your home and I
thought, oh, okay, and you'renot a police officer, so if you
counted six, a police officermay have counted 12.
Example that you gave with yourwife on how she liked to walk
(01:29):
around the neighborhood this iswhen the disease was advanced,
but obviously she could stillwalk and she would take scissors
and she would prune theneighbors' flowers.
Now, the neighbors did not askDenise to prune the flowers, but
because she loved flowers andshe thought they'd make she was
(01:51):
gonna make them more beautiful.
And a caregiver contacted youto say, oh my goodness, she's
out here with scissors,chocolate paper, what am I
supposed to do?
Your response was Let her do it.
Let her do it.
Let her do it, let her be happy, let her have her happiness,
and that's what made her happy.
(02:13):
And parenting up.
Caregiving adventures withcomedian J Smiles is the intense
journey of unexpectedly beingfully responsible for my mama.
For over a decade I've beenchipping away at the unknown,
advocating for her and pushingAlzheimer's awareness on anyone
and anything with a heartbeat.
(02:34):
Spoiler alert this shit isheavy.
That's why I started doingcomedy.
So be ready for the jokes.
Caregiver newbies, ogs andvillage members just willing to
prop up a caregiver.
You are in the right place.
Hi, this is Zeddy.
(02:56):
I hope you enjoy my daughter'spodcast.
You double K podcast.
You double K.
Today's supporter shout outcomes from Instagram.
The underscore distinguishedsilver beard.
I'm so happy for you and theentire team.
(03:17):
Congratulations on this verygreat achievement.
They're praying hands.
There's a high five, the high10 hearts, kissy face emojis, a
(03:40):
bunch of firebombs and applauseclaps Amazing.
Thank you so very much.
I think that was in referenceto us going on tour in Detroit
and doing our three part serieswith Wayne State NIH.
Dr Detroit aka Dr McNeil.
It was such a great time.
Now, if you want to be therecipient of a supporter, shout
out.
You know what to do.
Leave a review on Apple podcast, youtube, instagram or in our
(04:06):
text community.
All right, until next time.
What's up, family?
It's your girl, jay Smiles.
We're here with a reallyexciting episode.
I know, I know, you're like Jay.
You say that every damn time.
It's not my fault.
The Alzheimer's gods are like.
(04:26):
You know what?
If you got to go through thisdreadful disease?
What we're going to do, jay, iskeep plugging you in to hot
guests Now, I don't mean hotlike sexually hot.
Maybe they're sexually hot, butI don't know about that.
I can promise you I haven'tslept.
Let me make sure.
Yes, I have not slept with anyof my guests thus far.
(04:48):
There is one in my head, though, that I'm trying to get him on.
We'll talk about that later.
Ok, anyway, fast forward backto today, today's guest.
What's so exciting is this dudeis a caregiver you know, once a
caregiver, always a caregiver,an advocate, and he went so hard
(05:09):
in the paint that theAlzheimer's Association said hey
, hey, hey, come over here andjoin our team.
Like, he has business cards,from being a caregiver to having
business cards, to going toCongress, to legislating what.
So here's my man, dan Gerke.
(05:32):
It rhymes with turkey.
It doesn't have a U in it,though, which is very, very
strange.
I like to call him Gerke, butit's wrong.
So if you're thinking that whenyou see it spelled, don't do it
.
Rhymes with turkey.
Speaker 1 (05:45):
That's why I say just call me Dan Right, keep it
simple.
Speaker 2 (05:49):
See what I'm saying.
He has a sense of humor.
How you doing, dan, awesome,awesome, great to be here.
Thank you so much.
This guy is so well plugged in.
We are actually right now inthe office of the Alzheimer's
Association for the state ofGeorgia.
That is a really big deal.
So thank you so much, dan, formaking sure that we had access
(06:13):
to this space, because there isan energy and a vibration that
exists here that doesn't reallyexist anywhere else in this
state.
Speaker 1 (06:21):
Yeah, it's a very positive vibe here.
We're all optimistic aboutwhat's going on in the world of
Alzheimer's.
We've hit some milestones andturned the corner on several
initiatives and we're realexcited yeah.
Speaker 2 (06:35):
Yeah, yeah.
So we're going to get into whyDan is super special.
That's what I'm about to doright now, people.
So Dan has been a caregivermore than once and his wife, who
is no longer in a physicalhuman form, had Alzheimer's and
(06:57):
Dan was her primary caregiver.
But Dan had a unique way ofcommunicating with his wife that
I found simply fascinating.
And in a moment we want to getto that when I like to start on
all our conversations, becauseso many people are really new to
(07:20):
caregiving and they're not sureif their loved one is just
aging or is this possibly adementia-related disease.
So, with your wife, what causedyou all to say you need to go,
we need to go to the doctor?
Speaker 1 (07:38):
Yeah, yeah, and we struggled with that for a while.
She was in her early 50s and ofcourse at that age Alzheimer's
was the last thing we weresuspecting.
But she was displaying a littlebit of memory issues, but it
was more her inability to cometo decisions about things and
(07:59):
getting confused.
That was the biggest issue.
She was getting confused.
So I said let's go into yourprimary care doctor, and we did.
And the way she was describingthings, she said I wasn't
sleeping well at night and helatched onto that.
So he referred us to a sleepspecialist way too long, for
(08:28):
about a year and a half, almosttwo years.
And guess what?
She kept getting sicker andsicker and more confused and
losing her memories.
And I'm like all these pillsand therapies and machines are
just not cutting it.
So we went to a neurologist,finally that specialized in
memory issues and within aboutsix months, because of all the
(08:48):
testing that went on, he cameback and said do you have
Alzheimer's disease?
This was when she was 56.
That's crazy, oh, and you knowwhat it did?
Two things it explained a lotof what was going on.
It's like, oh, that makes sense.
But there was also the bigshock factors like how can
(09:09):
somebody 56 have Alzheimer's?
Speaker 2 (09:11):
I had no idea, and that began our journey with the
disease at 56 years old forthose of you who are viewing it,
you can see we have a book heretitled Unforgettable
(09:32):
Unbelievable.
Just in case unforgettablewasn't enough, it was also
unbelievable A Journey ofTelepathy and Compassion in
Alzheimer's Care.
Now we're going to get intowhat all this title means and
(09:54):
what it holds inside of it.
But, dan, in reading your book,what resonated most with me is
how honest you are about beingmad.
There are a lot of people inthe caregiver space.
They write something Maybe it'sa blog, it's a book and they
speak more of just shock andsadness.
(10:17):
But you were like I was pissed,and I was like this is my guy.
I was also pissed and itappears your wife, denise, she
was also pissed.
And speak to those emotions andinitial frustrations on behalf
of both of you, because I don'tknow that that gets enough
(10:41):
airtime.
Speaker 1 (10:43):
Yeah, and, as you know, there's a range of
emotions that come up as acaregiver, as a person living
with the disease, and I justwant to stress it's so important
(11:07):
to be able to do and used to beable to do seamlessly and
excellently.
Driving is the most pertinentexample of you know, she was
just.
I want the freedom to go outand do whatever, wherever I want
to go, whenever I want to go,and when it finally got to the
point where I had to take awaythe car keys oh my gosh, we are
talking about World War III atthe house and it would come and
(11:30):
go for a while, but it was sodifficult Seeing the anger.
I knew why she was angry and itmade complete sense, but yet it
was so hard to deal with thattoo, because it's like I cannot
give you the keys, and that wassuper frustrating and caused me
(11:52):
to be angry at the disease.
I remember telling myself goingthrough this journey either you
can't get, you can't get, don'tget mad at Denise, get mad at
the disease.
And that began my journey ofdon't get angry, do something
for that.
And that began my role as doingsome advocacy.
(12:16):
Going to Washington DC, Peopletold me you need to write a book
because there's so many greatstories.
I wrote the book with theintention of getting it out
there to the caregiving world,to the caregivers, so that they
could see this is what this is.
This is a disease like no other, and there are better ways to
do it than just not recognizingyour emotions, not recognizing
(12:40):
what's going on.
Just please get out there,recognize what's going on and
get help.
That's one of the reasons Iwrote the book.
Speaker 2 (12:47):
I'm happy you wrote the book.
Speaker 1 (12:48):
Thank you.
Speaker 2 (12:50):
You had a technique that I haven't I don't know, at
least I haven't heard of it much.
I feel like this is the firsttime I have been made aware of
this.
You determined okay, that's it,she can't drive anymore.
Because you were following herto aqua aerobics or aqua fit
(13:13):
class.
Speaker 1 (13:13):
Yes.
Speaker 2 (13:15):
I thought that is so cool.
You weren't driving in the carwith her, you weren't making her
watch you drive, you actuallylet her drive but followed her
multiple times so that you coulddiscern this is actually
(13:38):
starting to decline in a waythat's not safe.
So therefore, your decision,I'm sure became it was more
emphatic that it had to happenbecause, as you say in the book,
I think you said you countedsix or seven traffic violations
just in going about a mile fromyour home and I thought, oh OK,
(13:59):
and you're not a police officer,so if you counted six, a police
officer may have counted 12.
Speaker 1 (14:04):
He only needed one to pull her over.
Speaker 2 (14:06):
Right, exactly, but just as a technique to everyone
in the parenting up community, Iwant to give that as an example
of when you're 10 toes down andleading with compassion around.
She's angry.
She wants to keep driving.
(14:31):
To the extent I can, let herkeep driving, I will.
And you came up with a strategythat could then inform your
heart and your mind of whenenough is enough.
So I needed to state thattechnique because I was like,
yeah, just drive behind her.
Why isn't that like on all thecommercials?
(14:52):
This is what you should dobefore you take your person's
keys, because then you know fora fact, let's you know, give me
the keys.
It's time to move on.
Um, another very uh, becausethis was I'm a comedian.
A hilarious uh point that youdescribe is um, there was a
(15:15):
moment where there were loosevowels and you were trying to
get her to sit down, mm-hmm, andshe was trying to leave Right.
The way you describe thefrustration that you are having
with each other and you don'teven have a chance to put gloves
(15:37):
on Right.
Share a little bit about thehumorous side of that now
looking back on it, or even inthat moment after you got
through it.
Speaker 1 (15:50):
Yeah, I think so much of that was about taking deep
breaths.
Often and frequently she justhad an issue she had diarrhea
and I had to get her cleaned up.
She had diarrhea and I had toget her cleaned up.
And at the stage of the diseasethat she was at, she just was
having difficulty understandingwhat was going on.
(16:12):
And I had her there in thebathroom and you know, all the
while trying to take off herDepend diaper, get something to
clean her up with.
And yet in her mind, she said,was saying to herself I could
(16:36):
almost hear her say I got to getout of here.
This is a bad situation, right?
I've got diarrhea, I've got toleave and go somewhere else when
she was going, who knows whoknows Away from this, though.
Speaker 2 (16:44):
This is messy, it smells and I don't want any part
of it.
Speaker 1 (16:46):
Exactly, exactly, and I even don't want this guy near
me, right?
So it was, and I kept tellingmyself.
I realized that that's whereshe was in her mind and that I
just had to keep going with theflow, try and calm her down.
And I did it was.
It took a while, it took awhile, but we got there and I
(17:08):
was able to get her in theshower, which she loves showers.
So I kept.
That was my carrot, let's getyou in the shower.
You love taking showers andfeeling that water on you.
So that was my carrot to gether in the shower.
And it all worked out.
But oh my gosh, I didn't keeptrack of the time, but I want to
say it was probably close to anhour in there with her.
(17:28):
It felt like the walls wereclosing in on us, but we got
through it.
Take deep breaths.
Speaker 2 (17:34):
You got to take deep breaths, goodness knows.
I've had some of my owndiarrhea moments with mom and
you're looking at the adultbrief and you're thinking did
this thing work at all?
She could have just had onregular pants, she could have
just been sitting here withnothing on and we could have
just let it go everywhere,because I feel as though this
(17:56):
didn't absorb anything.
Give me my money back.
At a minimum, give me my moneyback.
This didn't meet myexpectations.
Your um moment, uh, where yousay talk to me now.
I'm jumping around verypurposely, family on the book,
(18:17):
because you're gonna need to goget the book and buy the book
for yourself, right, and?
And dan has so much uminformation that I want to get
to in this episode that I I'mtrying to hit at least what
touched me the most, sure.
So there's a moment, momentwhen there's a chapter that you
(18:38):
call it Talk to me and you are,you're frustrated.
You speak on being frustratedbecause your wife's disease has
advanced to the point where youcan't verbally really connect
with her.
She's in the bed.
You finally come from the denwatching TV, you get in the bed.
(19:04):
Tell us what happens.
Speaker 1 (19:06):
Yeah, she was at a point where it was very
difficult for her to communicateanything A few words here and
there, but certainly you'd askher a question and she could not
verbalize her answer.
So, yeah, tough day got her tobed.
Thankfully she slept reallysoundly and through the night
most nights.
And so I come to bed completelydrained, frustrated from the
(19:31):
day, both with her, with thedisease and at work, and had
been having trouble getting herprimarily in the bathroom.
Trying to go to the bathroomcould sometimes take up to an
hour just to get her on thecommode.
Crazy.
And I was laying there wideawake she's asleep.
(19:52):
And I said in my mind.
I said, said to myself denise,this would be so much easier if,
if you could talk to me.
I immediately heard her voice,the intonation and and sound of
her voice in my head say talk tome.
And I'm like is she asleep?
Speaker 2 (20:17):
And she's asleep.
Okay, Was this the 70s LSDinvolved?
What's going on here?
Speaker 1 (20:21):
Dan, no drugs, okay Okay.
A couple of glasses of wine, ohyeah, it doesn't count.
Caregiver's necessity there.
Speaker 2 (20:29):
Yes, absolutely Okay.
Speaker 1 (20:31):
So we all have a prescription for red wine,
Exactly so, no drugs involved.
Heard her say talk to me and Isaid I immediately accepted that
that was her talking and I saidokay, how do I get you on the
commode?
Easier Easier for both of us,Because she was struggling.
Speaker 2 (20:51):
She was mad at me, Now is this only in your mind,
only in my mind.
Are you starting to talk outloud?
Speaker 1 (20:56):
Nope, I'm talking in my mind.
Every bit of this is in my mind.
And I said show me how to getyou on the commode so it's
easier for both of us.
And she starts putting picturesin my head about what to do.
And she says put one arm on myshoulder, one arm on my hip,
(21:16):
push gently here, turn me thisway, do this, do that.
And I thought to myself well,okay, sure, so I'm anxious.
The next morning I wake up likewho is anxious to get their
loved one into the bathroom.
Speaker 2 (21:34):
I can't right.
I can't wait to try this.
I can't wait.
I can't wait.
I want to see if I pass thetest.
Did I study well, yeah?
Speaker 1 (21:41):
So I get her up, we'd walk into the bathroom.
I do exactly what she hadshowed me through my mind Okay,
and it was, it was a matter of60 seconds.
And she's sitting on thecommode and I'm like matter of
60 seconds.
And she's sitting on thecommode and I'm like, yes, yes,
it worked.
And she looks at me.
She goes get out, like I'mdoing, I'm like the NFL football
(22:03):
player in the end zone andshe's like what is this idiot
doing?
Speaker 2 (22:07):
Right?
Well, you know what.
The celebration is no longerallowed, so you got a penalty
right.
All of that showboating is notnecessary then.
Speaker 1 (22:15):
Right, well, I pushed it a little far, so that was
proof of that.
I heard her and that she wascommunicating, and it just it
went to other places ofcaregiving, getting her in the
car, asking her what she wantedto eat, what she didn't want to
do, where she wanted to go,things like that.
Speaker 2 (22:36):
That's where the telepathy comes in everybody.
In the book title Was this yourfirst experience with telepathy
?
Speaker 1 (22:52):
Yes and no.
I had been on a I guess youcall it a spiritual,
metaphysical journey for acouple of decades, doing
different modalities likeshamanic breath work, meditation
.
I still meditate every singleday and I have for, wow, 20, 30
years.
Okay, that explains your chill.
(23:13):
Ok, and so that explains yourchill.
Speaker 2 (23:15):
Ok, listen, how many times.
Ok.
Parents and family, howsalesperson than I could be.
Okay, keep going.
Speaker 1 (23:47):
So I had been open to this kind of work in the past.
I was not expecting it, yet Iembraced it.
I said this is going to be agreat method to communicate so
that I could be a bettercaregiver for her and make her
happier and make our lives alittle bit easier Not easy.
There's very little easy withthis disease as a caregiver or a
person that has it, yet it wasgoing to make our lives easier.
(24:08):
Yeah, I love that.
Yeah, so meditate, that's rightMeditate.
Speaker 2 (24:12):
Meditate, we must meditate, that's right.
Meditate, meditate, we mustmeditate.
Your continuation with how youwere able to communicate with
your wife.
Now, first, it speaks to theconnection of the two of you,
because I know some people theycould ask questions.
(24:34):
All they want to and allthey're gonna get back is I know
you're not fucking asking menothing, I'm not telling you
shit, it's probably what day weget back, but it speaks to their
relationship.
Um, in advance of the disease,and how much you all were
walking through the journeytogether attempting to say, hey,
(24:56):
we're going to face this headon, do the very best we can.
So I want to congratulate youon staying 10 toes down, facing
the fire that's not at all easyand then to embrace that what
you were hearing was really fromher and to at least try it.
(25:16):
So, family, that's what I wouldlike to say.
If you, if you're, whether youdirectly say your loved one's
name, if you're putting in theform of a prayer or just a
frustration outburst, whatevercomes back next, as the next
thought you have in an answercould be from another realm or
(25:40):
could be divine, it couldactually help and not just be a
random thought floating betweenyour ears.
Speaker 1 (25:49):
Absolutely so.
Speaker 2 (25:49):
that's just my little deposit right there.
Thank you for that.
Absolutely, that's just mylittle deposit right there.
Speaker 1 (25:52):
Thank you for that Absolutely, because a lot of the
messages that we get back, evenif we aren't used to telepathic
communication, you know, youmay be thinking oh hey, I wonder
if my mom would like some icecream.
Well, okay, in my world that'sher communicating to you that
she would like ice cream.
(26:13):
That's just not a randomthought.
Speaker 2 (26:15):
Yeah, because what made me even think of ice cream?
Speaker 1 (26:17):
Exactly, exactly, you know what that happened.
Speaker 2 (26:20):
The other night my podcast team and I went.
We had a bit of a celebrationdinner and I purposefully did
not finish my dessert.
It was very good, but halfwaythrough I thought I wonder if
Zeddy would like this and I juststopped eating.
(26:41):
I took it home.
I kid you not, I get home,she's on the toilet, we eat on
the toilet, it's no problem.
I have actually fired a coupleof caregivers that were like I
don't want to give her water orany snacks on the toilet, it's
no problem.
I have actually fired a coupleof caregivers that were like I
don't want to give her water orany snacks on the toilet and I
was like, okay, cool, no problem.
So here's your purse.
(27:01):
Nobody asked you what youropinion was.
Right, I had.
It was, um, blood orangecheesecake.
Very good, I had it, I got it.
You know I, I got scoop.
I have it on the fork.
I give it to her.
She opens her mouth as wide aspossible.
So now you know there's nofighting of swallowing.
(27:23):
She chews it.
She's nodding her head, yes,and kind of smiling at me.
I put the fork down by my side.
Then her eyes followed the forkdown to my side, as if to say,
is there some more down there,like where is the next spoon?
And I was like, all right, shelikes it.
(27:44):
Okay, cool, this is a good idea, jay, absolutely, so I hadn't
thought about that.
But so small moments, where dothose thoughts pop in?
So I love it.
That's fantastic.
(28:16):
You spoke about that.
Anger of the disease led youinto advocacy.
That I got out of your book wasmaybe in 2012, 2013,.
Unpaid caregivers accounted forapproximately $235 billion.
Yes, a decade later, when youauthored the book, it was $340
billion.
So it's more than another $100billion of what unpaid
(28:39):
caregivers are giving to thesystem and or losing for
ourselves.
Give us your thoughts on that.
Speaker 1 (28:49):
Yeah, that was boy.
And in case your viewers don'tknow, advocacy is a fancy word
for lobbying.
Speaker 2 (28:57):
Yes, okay, that is right.
Speaker 1 (28:58):
We're going to politicians and I had my doubts
as to whether that was going tobe effective or not and I
thought, well, let's give it atry.
So, and as advocates for theAlzheimer's Association, and
when we go to Congress andCongress people, we're given
this information.
And I saw that statistic aboutthe $235 billion that was being
(29:22):
spent by caregivers.
I thought that is, that'sinsane.
Yeah, that's a crazy number.
It's stupid.
Speaker 2 (29:32):
Why are we spending that and where are we?
Speaker 1 (29:34):
getting it from?
Yeah, exactly, exactly.
Speaker 2 (29:37):
I would like my part of the two hundred and thirty
five billion back.
Actually, yeah, it's a taxrefund.
What's going on?
Yeah?
Speaker 1 (29:44):
exactly, and so that was criminal to me.
So I said we got to dosomething to fix that, and I
have learned that the way to fixthat is well, let's get rid of
this disease.
Yes, okay, back that up.
How do we get rid of thedisease?
Through research, throughfunding research that is going
(30:04):
to come up with a treatment,with a cure, with whatever.
Anything, please, because in2012, we had two medications
that were given that were reallyineffective, quite frankly, and
I had also heard that, becausethe funding level at $500
million at the NationalInstitutes of Health were so low
(30:25):
that researchers in theAlzheimer's world were leaving.
They were going to otherdiseases because there was no
money in it.
Speaker 2 (30:32):
Hold on one second, yeah.
Speaker 1 (30:34):
Hold on one second, believe it.
Speaker 2 (30:36):
You're telling me in 2012, the only amount that we
had in the National Institutesof Health, otherwise known as
NIH, which is the major federalarm of continued research.
I want the parenting communityto realize we can't count on
(30:58):
private industry to continueresearch.
They may research whatever'shot, whatever drug or disease
they think will give them aprofit for that decade, but it's
NIH that does research overfour, five, six, seven, eight
decades, over two or threepeople's whole lifetimes, so
(31:20):
that we can have real data.
Exactly $500 million.
That was it.
You could blow through that inlike a week, oh easily.
Speaker 1 (31:28):
In research and we were looking at other diseases
and you know, cancer was up at 4billion, 6 billion, heart
disease 6 billion, and great,Great.
We needed that level ofresearch on those diseases.
And guess what we were?
We, as a country, we weremaking progress, we were coming
up with therapies for heartdisease and cancers and we're in
(31:51):
this world of Alzheimer's wherethere really are no effective
therapies and we said that's notright.
That's not right.
So what we've been able to dothrough those advocacy efforts
over the past 12 years, we tookthat $500 million and we said
this is not enough.
We went to DC year after yearafter year, telling our stories
(32:13):
of our loved ones who had thisdisease and why it needs to stop
.
We've raised that to almost $4billion in that 12 years.
We're at $4 billion now, whichis great, which is awesome.
Speaker 2 (32:27):
That was a high five smack clap.
What that is unheard of.
Speaker 1 (32:31):
So now researchers are flocking to this world.
Private companies are doingmore and more to come up with
therapies from a cure.
Prevention Blood test now hasjust been approved by the FDA.
We are at a turning point inthat research effort.
Speaker 2 (32:51):
Tell us a little bit about the blood test.
Speaker 1 (32:52):
Yeah, yeah.
So this is exciting, and Iremember hearing about this
again back in the 2012, 13, 14area of that a blood test was
needed.
A blood test was needed becausewhat we're doing right now is
we're diagnosing Alzheimer's theequivalent of diagnosing
someone with cancer at stagefour.
Speaker 2 (33:14):
There's really yes you can make them comfortable,
but that's so late in the game.
All right, hold on.
You got to pause then I needeverybody to digest this.
So I need everybody to digestthis.
(33:41):
Prior to the blood test, whichmeans for Zetty, for Dan's, was
always, 100% of the time, alwaysequivalent to stage four in a
specific cancer.
And and how many times has yourheart just sank to your ankles
when you heard about, oh, mygoodness, it's cancer, what
(34:04):
stage?
The very next thing you saywhat stage is it?
And as long as you don't hearfour there, I'm getting
goosebumps.
There's hope.
There's hope in the in the room.
Yeah, oh, it's one is two, okay, three, okay, at least it isn't
four.
But what we have been fightingand combating I'm so grateful
(34:25):
for that.
Uh analogy you're giving isshit.
Speaker 1 (34:29):
We're starting off at stage four we're starting off
in a bad place.
It's only going to get worse.
But this blood test, blood testis a game changer, because now
we we buy a simple blood testbecause you may have gone
through this with with your momtoo is the way Denise got
diagnosed was through a lumbarpuncture, spinal tap.
(34:51):
Well, that's pretty invasive,that's pretty tough.
You're laying there andsomebody's sticking a needle
this far into your spine.
Speaker 2 (34:59):
Ouch, yes, and a person who doesn't know how to
be still doesn't reallyunderstand because, um, if I'm
not mistaken, with lumbarpuncture, you're not sedated.
That's what I recall.
So then you're.
You're trying to explain whatthis is.
You can't tell somebody withalzheimer's don't move.
You have a a great don't movestory in this book.
(35:21):
Hey, I just want anybody, onceyou get it, when you get the
don't move, please dm me andtell me write in the comments
how y'all feel about the Don'tMove story.
I'm not going to go down thatone, but that was hilarious,
yeah.
Speaker 1 (35:32):
Yeah, yeah.
So the diagnosis is veryinvasive right now, yes, and the
blood test is so much simpler,obviously, you know, prick your
finger, test the blood anddetermine whether you have
Alzheimer's or not, and whatthat does is allows us to get in
earlier in the disease process,and I think I'll lay out the
(35:55):
vision.
The vision I would love to seethis I hope we see it in our
lifetimes is that you're in your20s and 30s.
You get the blood.
The doctor says, hey, it's timefor your Alzheimer's blood test
.
And you go okay, you get theblood test.
Doctor comes back and says, hey, you're probably going to
develop Alzheimer's disease inyour whatever 60s, 70s.
(36:17):
Yet here here's a set of pills,shots, whatever therapy.
Start taking this now, whenyou're in your 20s, and you will
not get Alzheimer's.
Speaker 2 (36:28):
Vaccine Right.
Some version of Alzheimer'svaccine supplement cocktail.
Speaker 1 (36:34):
Early on.
Speaker 2 (36:35):
I will take mine now.
Yeah, okay, so whoever'slistening to this in Congress,
go ahead and approve the nextstep, okay.
So I can go on and pop a fewpills.
Speaker 1 (36:44):
Absolutely.
Oh my goodness, that's thevision, that's what we want.
Speaker 2 (36:47):
Well then, that's what we want.
That's the vision I'm going to.
We're going to telepathize.
I made that part up.
I'm sure that's not really aword with Congress.
It's a lot of them.
We got to pick somebody thatmight give it back with us.
Don't just go to everybody inCongress trying to do it.
I don't think they could sendback some bad energy.
We don't want to do that.
Dan, this has been such afruitful and exciting
(37:14):
conversation.
I'm not really ready for it toend, but you know the time and
the clock is saying it is timeto wind down a little bit.
To wind down a little bit.
(37:36):
But before we do, I want togive you another set of kudos.
I guess there was an examplethat you gave with your wife on
how she liked to walk around theneighborhood.
This is when the disease wasadvanced, but obviously she
could still walk and she wouldtake scissors and she would
(37:58):
prune the neighbor's flowers.
Now, the neighbors did not askDenise to prune the flowers, but
because she loved flowers andshe thought she was going to
make them more beautiful.
And a caregiver contacted youto say oh my goodness, she's out
here with scissors chopping uppeople's lawn.
(38:19):
What am I supposed to do?
And your response was Let herdo it.
Speaker 1 (38:25):
Let her do it.
Let her do it, let her be happy, let her have her happiness and
that's what made her happy andyou wouldn't believe the end
results.
I would come home and theseflower arrangements that she had
were beautiful.
I would start taking picturesand send them out and put them
on social media.
Look what Denise did today.
It was just unbelievable.
(38:46):
Yeah, you do not want to stopher, and she got to the point.
It wasn't just walking alongthe street, she would walk up in
people's driveways.
Speaker 2 (38:54):
Did any neighbor ever say anything?
No, no See what I mean.
Speaker 1 (38:59):
It's like let them do it.
And that was kind of myphilosophy is like you know, she
got a bad rap, she got a baddeal, Let her do whatever she
wants.
So I like that we did.
Speaker 2 (39:10):
I like that.
Yeah that's.
I think that's a fantastic wayto end this part of the
conversation.
The book is Unforgettable,unbelievable a Journey of
Telepathy and Compassion inAlzheimer's Care.
Now Dan also speaks quite a bitabout his father and additional
(39:34):
telepathy.
But I knew if I went into thatwe would be here two days.
So I wanted to just I say OK,you know the best thing if I
really go deep on his wife.
But the telepath they startedwith his father after his father
passed.
So I found it fascinating thatwith Denise she was still alive
(39:57):
and with your father he hadpassed.
But the point is, if you areleaning into intuition, if you
are leaning into intuition, itwill help and you can be led in
your journey as a caregiver.
When you think you don't havethe answers, perhaps your loved
one can send it to you.
(40:17):
So stop sometimes freaking outso fast.
Just give them a moment.
Give a moment, dan.
Where can we get this book?
Where can we contact you as itrelates to assisting in anything
related to the Alzheimer'sAssociation being an advocate?
Speaker 1 (40:37):
So the book is on Amazon.
I have a website called Soul toSoul Communication and I offer
the telepathy service to othercaregivers so I can contact your
mom, someone else's parent,whoever else, to offer those
same kind of tips, so they cantell me messages.
(40:57):
So I offer that service inthere.
On soul-to-soul communication,I do advocacy work.
I would encourage anyone who'sabsolutely even the slightest
interest in doing advocacy orfundraising for the Alzheimer's
Association to go to alzorg andtake a look on the website.
(41:18):
It's beautiful.
The Walk to End Alzheimer's iscoming up here in Atlanta in
October.
I'd love to have you join usthere as well.
So there's a variety of ways toget involved.
Speaker 2 (41:31):
The Parenting Up community.
We will be there.
We might even be there, youknow, with lights and a camera
and shake some things up andmake some noise.
Speaker 1 (41:40):
Love it.
How about that?
Speaker 2 (41:42):
Awesome, all right.
Speaker 1 (41:42):
And I'll see you there with our representative
too.
Right, we're going to gotogether.
Speaker 2 (41:46):
Representative Nakima Williams.
We are going to continue theadvocacy.
Dan has been so kind as to sayhe will allow me to kind of ride
his coattails and just jumpright on to his lobbying team,
which means I don't have tostand outside and watch, and I
am grateful, I'm grateful, I'mso grateful, thank you.
(42:08):
Thank you Absolutely, thesnuggle ups.
Number one caregivers, you canbe angry, you can be pissed at
the disease, from the day yourLO is diagnosed all along and
(42:29):
the day they die.
It's okay, you got the right tobe mad.
Avoid taking that anger out onthe person with the disease.
They deserve it the least.
If you think you mad, you'regoing to have to get in line
(42:52):
behind them.
It's okay.
Let that emotion out.
Number two Like Dan said, lether do whatever she wants.
If what your LO is seeking todo is not gonna cause chaos or
calamity, if it's not about tokill somebody or make somebody
(43:14):
go to jail, let him do it.
He let her go and prune flowersout of everybody's yard and
make special bouquets.
No neighbor said anything.
Now some of y'all might saywhere'd they live?
That must have been some hippiewhite folk commune neighborhood
(43:35):
.
I don't know.
That's doubtful.
This is the point.
Go ahead and try it, becausethere's so few things that can
make a person with dementiaactually have a moment of joy,
and then that moment of joy itmight only last another couple
(43:58):
of months before the diseasesnatches that happiness from
them.
So so let them do it.
If they want to walk around incircles for what you think is no
reason, don't stop them.
If they want to cut flowers outof the neighbor's yard, what
the hell?
What's the old saying?
(44:20):
Don't ask for permission, askfor forgiveness after you do it.
Y'all feel what I'm saying.
Number three consider becomingan advocate in some form or
fashion for this disease.
If any part of you bubbled upwith the damn, I ain't know that
(44:43):
, it's that many caregivers,it's costing that much money,
it's that little researchdollars, if any of that struck
you as unreasonable, unfair orwrong, consider being an
advocate.
And, like Dan said, in thisspace, the word advocate means
(45:08):
lobbyist.
You can lobby on a federallevel, you can lobby on a local
or state level, no matter whereyou live and how you are hearing
or seeing this, it's somelobbying going on.
You can go to ALZorg to getstarted.
If that doesn't work, holler atyour girl and we'll help you
(45:30):
find the right place.
Thank you for tuning in.
I mean really, really, really.
Thank you so very much fortuning in, whether you're
watching this on YouTube or ifyou're listening on your
favorite podcast audio platform.
Either way, wherever you are,subscribe, come back.
(45:50):
That's the way you're going toknow when we do something next.
Y'all know how it is.
I'm Jay Smiles.
I might just drop something hotin the middle of the night.
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