MARY S. DANIEL: Caring Loud and Proud (and Creatively) During Covid and Beyond

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Don Priess (00:00):
When the world has gotcha down, and Alzheimer's

(00:04):
sucks. It's an equal opportunitydisease that chips away at
everything we hold dear. And todate, there's no cure. So until
there is we continue to fightwith the most powerful tool in
our arsenal. Love. This is LoveConquers Alz is a real and
really positive podcast thattakes a deep dive into

(00:24):
everything. Alzheimer's, TheGood, the Bad, and everything in
between. And now, here are yourhosts Susie Singer, Carter, and
me, Don Priess.

Susie Singer Carter (00:36):
Hello, everybody. It's Susie singer
Carter. Happy 2023

Don Priess (00:42):
Yes, and I'm Don .
And this is the first show of2023 Love Conquers Alz. And Hi,
Susan.

Donald.
Happy New Year.

Don Priess (00:51):
Yes. Happy New Year.
Let's hope it's a happy newyear. Please, please. Yes, I
heard of the shenanigans.

Like my girlfriend says. Like that.

Don Priess (01:06):
Classy.

It's so classy, but I will step over
cracks. And I will knock a lotof wood. Because last year was
harrowing.

Don Priess (01:17):
Yeah, it was something it was kind of
hopefully that was like theculmination of the three years
of whatever. We've been in thequagmire we've been in. And
yeah, it really just came to ahead last year and hope that
we're now heading, you know, tothe to the other side of the
hill

to some some semblance of normalcy,
right? Yes.

Don Priess (01:40):
Wouldn't it be lovely? Wouldn't it be awesome?

I don't remember what it is, though.

Don Priess (01:45):
wouldn't recognize if it hit me in the face. Right.
That's how we

were like battered. People were like, oh
my god, I could sunny today. Ourbar is so low. Yeah.
We got honestly, we really hard,but maybe it's good because
maybe it recalibrated us to sortof appreciate the smaller

(02:12):
things. And you know, I think

Don Priess (02:16):
that's exactly what I do appreciate. Like, if you if
you do anything of norm that wasthat used to be considered
normal now, I do appreciate it alot more.

Yeah, but like we were in a restaurant
last night for my girlfriend'sbirthday. And it was so nice to
be in a restaurant. And, and itwas really crowded and noisy,
like normal. You'd be like, God,it's so noisy. Why this is the
worst. I love it noise. It'speople. It's lights. Yeah, it's
life. It's so nice. It's it'snot it's not takeout

Don Priess (02:54):
curbside pickup,

curbside pickup. Anyway, that's enough of
that crap. Yeah. All right.
Absolutely. Well, anything elseGood. What's happening with you?
How's everything

Don Priess (03:06):
working on a documentary that we hope to have
done fairly soon. So we can rollright into the next documentary,
which is ours,

which is ours. No Country for Old people.
I feel very good about it. AndI'm appreciate everybody that's
been supporting us the nationalconsumer voice for quality, long
term care and candor here inCalifornia and AMWA. The AJ look
at me with all my acronyms. Theletter like, unlike

(03:37):
professional, but I'm not asprofessional as our guest. Why
don't you tell everyone who wehave. I don't know if

Don Priess (03:42):
anyone is as professional as our guest who
happens to be Mary s. Daniel.
Mary is a board certifiedPatient Advocate with more than
30 years of medical practicemanagement experience during
COVID. In order to see yourhusband Steve and Alzheimer's
patient, she took a job as adishwasher in the Memory Care
Center where he lived. Her storyof perseverance and
determination was featured inhundreds of news outlets around

(04:03):
the globe. Mary founded theFacebook group caregivers for
compromise, because isolationkills two, which has over 14,000
members and chapters in everystate, fighting for the rights
of her husband and 1000s ofothers who were isolated. Her
grassroots efforts got thegovernor's attention and Mary
was named to the Florida TaskForce on the safe and limited

(04:24):
reopening of long term carefacilities. The recommendations
of the task force were accepted.
And the central caregivers wereallowed back in facilities to
see their loved ones. She's aremarkable woman with a
remarkable story. And we can'twait to hear more. So let's say
hello to Mary Daniel. Hello,Mary.

Mary Daniel (04:43):
Hello. I am thrilled to be here with you
guys.

Hi, Mary.
Thank you for coming. Well,first before we get into that, I
just want to say that threeweeks ago you lost Steve and I
My heart is with you. And it's Iknow the road you've been with a
lot of us, we all walk, youknow, we've all got that road,
it's dip, it's a differentstreet, but it's the same road.

(05:08):
So we get it. And I know, Iknow, all the mixed feelings
you're feeling now. And I knowit's a huge transition for you.

It is I've been I mean, he was diagnosed nine and
a half years ago. So I have beenhis caregiver. For that amount
of time, I mean, a dailyresponsibility for that amount
of time and his parents beforehim. I mean, his father just
died two years ago. And so I wastheir sole caregiver, literally
for decades. We were married 26years. And so it's a real, I

(05:40):
knew that I knew what the endlook like. I mean, in the sense
of I knew at one point that thiswas going to end, I've known
that right for a very long time.
But the realization that we'reactually here, and that it's
over is it's a real interestingplace to be in trying to figure
out sort of my new normal, Iguess,

totally, totally well, before you got to
this new normal, he just just,you know, inspire us with how
you came up with this idea toget to go in and get a job. And
how that worked out. And whatwhat obstacles did you hit what
what, or didn't just give us alittle bit because I think it's

(06:23):
just extraordinary.

Back in March of 2020, when we got word that we
were locked out that we were notgoing to be able to go back in,
I immediately call the corporateoffice of our facility. And I
said, you know, very naively,this isn't going to work for me,
I've got to, I've got to getseen, I promised him that I
would be with him every singleday. And so I have to be in
there. And I have to see him.
And they said like all the restof us, you know, we've got 10

(06:49):
days to slow the curve orwhatever it was back then. Let's
be patient, let's see whathappens. And that's when I asked
for the job. You know, let me goin and work. Let me do something
in there. And they said, Let'sjust see what happens. This is
going to be over in a couple ofweeks. And, and the you know,
the days turn into weeks, andthe weeks turn into months. And
before I knew it, I mean, youknow we'd had a couple of months

(07:12):
go by and we tried to Windowvisits, he cried the entire
time. It was just awful. Hecouldn't understand what was
happening. He it till the veryend, he never knew what COVID
was, he never understood that Iwas ever a dishwasher. He had no
idea about any of that. So Iknew that I had to fight to get
to him. And so I startedemailing and calling everybody

(07:37):
that I could possibly think andthink of from every reporter in
I'm in Jacksonville, Floridafrom local reporters here, I
would copy the the governor'soffice and the head of the
Health Care Administration here.
I mean, I just started shootingout these emails, and making
phone calls saying my mantra atthat point was there has to be a

(07:57):
better way. Mate, let's do aclean room where we can go in
and then after I leave withSteve, you scrub it down and you
bring in the next family member.
There's I mean, I wear a hazmatsuit, whatever you want me to
do, I'll do it. There just hasto be a better way this is not
going to work. So I startedmaking some noise. And it
eventually got the attention ofthe corporate office again, I

(08:21):
was on the news quite a bit. Ihad a couple of reporters pick
up the story in Jacksonville.
And the facility called me outof the blue at the end of June
of 2020 and said we have a jobif you want it. And I said I'll
take it without knowing exactlywhat I was getting myself into.
And I said what is it and theysaid it's a dishwasher. So

(08:42):
dishwashing, it was so I startedon July the third went in for my
first shift. And after fivehours I worked five hours that
day doing lunch and dinnerdishes. I got to go in and see
Steve for the first time after114 days.

Don Priess (09:00):
Was there any pushback initially for them? Are
you even seeing him once youwere in there? Because you're
coming from the outside you'recoming from outside you're not
staying there.

They told me on that first phone call that it
that after my shifts I would beable to go and see him and stay
with him as long as I wanted tothat was on that very first
initial phone call. I will tellyou that I was I mean I was so
cautious my brother in law's aphysician here in Jacksonville I
went to his office before everysingle shift they did not
require me to do it but I took aCOVID test before every single

(09:31):
shift I knew you know what theintention The story was getting
if I'm just the person thatbrought COVID In this was not
going to go well no so I was alot of pressure to be absolutely
that I was being careful that Iwas not going out and being
careless and doing things that Ididn't need to be doing you know
to bring it into the facility soso they they let me in and once

(09:56):
that once that job started thethe local reporter here did a
story on me being in. And thatstory went viral.

Right? And so before before you got the job
in July. So do you. What Whatkind of pushback were you
getting before that happened? Iknow you said you went, you
ended up going to reporters intothe news stations and getting an
you know, causing some noise.
So, but during that time, youwere getting pushback, you
weren't getting any cooperation,right.

And he was so focused on the COVID, that they
were losing sight, they had nothoughts about what the
isolation was doing. Right. Andthat's why the group when the
story went, went went viral, Istarted the Facebook group
caregivers for compromise.
Because isolation kills to writewith the real message that we
understood the lockdowns weredone to the best of intentions,
there's no question in my mindabout that. It's what we thought

(10:46):
we needed to do. But we were wereally didn't give any thought
to the fact that isolation killstwo that we, you know, we ended
up seeing, I mean, you know,1000s of death certificates with
the cause of darkness, failureto thrive. Sure, because people
gave up they they weren't seeingthe people that they loved. Many
of them thought that they werebeing punished, what have I

(11:08):
done, you know, just my daughternot love me anymore? Yeah, all
of these things that you're notable to explain to a dementia
patient, particularly for themto understand what was going on.
And so it was incredibly painfulto have to watch this through a
window. So many people had towatch their family members die
through a window, that ourmessage was the isolation kills

(11:29):
to and that was the part of thestory that we wanted to tell.
And thankfully, it got theattention of Governor DeSantis
his office.

Do you think it was because of the the
news? That is the thing thatpushed it over?

There's no question about that question. Question.
Because I mean, I've beenwriting him for months, you
know, right. And you know howthat is never getting any sort
of answer back from anybody. Buthe he was at a news conference,
and he mentioned a woman inJacksonville who took a job as a
dishwasher. Okay, so I'm on hisradar. Now, I know I'm on his
radar, the next news conference,a few days later, he mentioned

(12:08):
my name. He mentioned me byname, right. Okay. Okay, we're
getting now you're cooking.
Okay, exactly. And then I got acall from his office saying he
was going to be in Jacksonvilleand wanted to meet with me. I
had no idea anything about theTaskforce. But we did, I sat
down and met with he and hiswife. And as soon as that
meeting was over, we went intoanother room where there was a
press conference, and heannounced the establishment of

(12:29):
the task force and that I wouldbe a member of that task force.
I

love it. I love it. So I laughing a little
bit. Because I think the factthat they too, they chose
dishwasher for you, which wasactually a gift because that
isn't thought I would take it.
Exactly, exactly. So but thefact that you did and it was
dishwasher and so that, but thatin turn really helped you

(12:56):
because it gave you the kind ofpublicity that love will out.
And that you know, it'sdishwashing, right.

If I had been the activities director, you know,
or the receptionist or part timereceptionist, yeah, it wouldn't
make any difference whatsoever.
It's funny, I actually wrote aletter, an email a couple days
ago to the CEO of ALG, SR is thecorporate office where my
husband was to thank him. Imean, none of this, you know,
the changes that we've been ableto make, and, and, you know,

(13:27):
being with Steve, you know, inso many, you know, 10s of 1000s
of other people who got to bewith their loved ones as well. I
mean, none of it would havehappened if they hadn't offered
me the job. I mean, nothingwould have happened, you know,

Don Priess (13:42):
it wouldn't have been out there. And you wouldn't
have been on any radar, it wouldhave been nice if you

just thank them. But it was nice of you to
thank them, because I don'tthink that they thought it like
you said it was gonna go thatway. But it was classy of you to
do that.

Well, when when we first started that my very first
day, they called me in and said,Oh, we're going to have a
conference call with thecorporate office was in North
Carolina, and I said, okay, andthey said, We want to be sure
you understand on page 47 of themanual that I hadn't received
yet. My employee manual, it saysyou can't speak to the media.

(14:18):
And I'm thinking to myself,Okay, I see what we're doing
here. I see how this is going towork. And they said, we have a
PR guy that you're going to haveto work with, and he'll arrange
everything for you. And I said,Well, I'm going to need to get
his number because I've got areporter who's meeting me
outside when my shift is overright today. So it turns out he
is an amazing guy. We he and Ihit it off wonderfully. We have

(14:42):
become wonderful friends. He sawthe story for what it was is a
great you know, not only a goodheartwarming story, but also
good for the company. Let's usethis to be good for the company.
And that's what I've told themall on Walmart. You guys are a
part of this and we need to usethat that this is As a type of
company for whatever reason,once this once it started

(15:03):
rolling, they were right therewith me, James Harvey was the PR
guy. And he and I, back to backto back to back interviews had
him arranged had him I mean, youknow, organized, we were really
working together to really makethe most of this and to get the
most out of it. So it was apretty cool experience.

That's great. That's good. It was a
happy accident, probably, youknow, at the end of this, right,
exactly, yeah, not to keep anoon. And I don't mean to be
negative, but I'm justwondering, I'm just want to keep
pulling it back to like howmuch, you know, serendipity also
went into it, and like, and sortof good, good faith for you that
that all of this, like, it allworked, it all work just right.

(15:42):
And like, and that's what youhope for, when you're
advocating, and when you'retrying to make some changes that
you don't know how it's gonnahappen, you just got to get out
there and activate it, andwhatever, you know, you, you
can't predict. And I, and I justwanted to highlight that
because, you know, you had noidea that they were going to
offer you that, and that was thebest thing they could have

(16:03):
offered you. And they probablyand obviously didn't predict it.
But then it's like, hey, we allwon. Right? From doing this.
Right. Exactly. And, and sothat's hoping, like, you know,
and I keep bringing it back,like to a bigger reform that we
need, you know, which is we'redire, you know, we really do

(16:23):
need that. And that's, that'sthe whole thing is that, you
know, just look at this ladywhat she's done this lovely
lady, that, you know, we all cando that. It just it takes it
takes love. That was yourmotivation right at the
beginning and 100%. And so love,love conquers all, right? I
mean, it's true. And, andingenuity and, and resilience,

I had no idea what it was going to look like, I
just knew, after sitting still,for a couple months, I knew this
wasn't getting me anywhere. Andso I just felt like it that, if
nothing else, if nothing worked,if even if I didn't have any
success, I wasn't just gonna sitback and wait for it to happen
to me, I was at least going tobe able to say I did my best to

(17:09):
try to get to him. And that'swhat I was shooting for it. The
first I'm not gonna sit here andlet them tell me what it is
we're going to do and not dosomebody has to see what this
looks like, these people need tosee what this looks like so that
they can be sure that theyunderstand the harm that's being
done to these 10s of 1000s ofpeople that have just been
basically locked away. Right.
Right. And with loved ones whowant to get to them, you know,

(17:32):
people and, and, you know, noteverybody else knew what to do.
But the beauty of the caregiversfor compromise group is they all
got to follow in behind me. Andwe started educating people on
what they can do in their ownstates, providing them I mean,
you know, I said it 1000 times,educate yourself so that you can
educate them. And then was theadministration of the

(17:55):
facilities, you're buyingpetitions in your area, your
legislators who are decidingwhat's happening here, we need
to educate them so that theyunderstand exactly what this
looks like up close andpersonal.

Absolutely.

Don Priess (18:08):
Did you think there has been or will be any residual
effect on isolation, becausethis was very, you know, COVID
was a very specific thing. Butin the future, I mean, we you
can see it when you walk intosome of the that some of the
residents are isolated, theystay in their rooms, everything.
Do you Did you see any type ofshift for conquering isolation

(18:31):
in the future? Or do you thinkit's just going to kind of go
back to where it was?

Well, we are currently working on a federal
bill, to be sure that it nevergoes back to the way it is
there's going to be somethingelse down the road. There's
going to be you know, even a fluoutbreak. It could be a flu
outbreak. It doesn't, you know,it doesn't have to be a a COVID
type incident. We had somebodywith a facility here in Florida
that shut down overThanksgiving, not this year. But

(18:56):
last year over a scabiesoutbreak.

I was gonna say something like that. Yeah,
yeah, that now they know theyhave

the power to do it.
And so before they've never doneit before, they've never
actually slam the doors closedbefore. Now they know they have
the power to do it. And sothey're doing it, they're
continuing to do it. So that'swhy we're continuing. We are we
are far from being done. We areworking on a federal bill. It
was really It will bereintroduced in a matter of
weeks into the new session ofCongress. We have 80 co sponsors

(19:25):
already. And we anticipate thatin this session, we can get it
passed in this session. So we'reworking to be sure. And it's
basically similar though to thelaw of Florida and essential
caregiver, two essentialcaregivers will always be
allowed to go in following thesame safety protocols as staff.
That's all we ask. We'll dowhatever the staff is required

(19:45):
to.

Yeah, that's awesome. And so I mean, I
don't know because I haven'tdone my research yet on this in
terms of the different statesand how they have responded to
This movement I know that itnothing changed, at least in
California that I'm aware of.
They listened to the CDC. Ithink the first time I saw my

(20:08):
mom was like a year, like 13months before I actually saw her
in person. And it was 10 feetapart outside with my side.
Yeah. And I was I went to my carcrying because it was so
frustrating, almost worse.

Right? Right.
Right. How do you say I can'ttouch them? I mean, how do you?
How do you say that I'm notallowed to touch them. And in
fact, for me on the task force,that was a real a real area of
that I fought very hard for theSurgeon General Florida was
gonna let us back in but not letus touch. And I mean, I sat
right here at this desk one day,and I mean, in the middle of a

(20:47):
meeting and slammed my fist onthe table. And I said, that's a
deal breaker for me. We have tobe able to touch I have to be
able to hold his hand, I have tobe able to rub his back for him
for Alzheimer's for dementiapatients, that human tasks
communication. That is it.
That's how he feels my love isme holding his hand rubbing his

(21:08):
back and giving him a hug. Soyou have to do it. And he
finally agreed, he said, we'regoing to put an asterisk by
this. And if we see an uptick incases, then you will you agree
to come back and revisit it? AndI said, Yes. And I'm thrilled to
tell you we saw no uptick incases when we when we got to go
back in. I doubt it to thegovernor, it was very simple. I

(21:31):
sat there in front of he and hiswife and I said to them, Why am
I allowed to touch my husband asa dishwasher? But I'm not
allowed to touch him as hiswife. Right? I mean, it was
pretty straightforward to me. Ican all I had to do was wear a
mask as the dishwasher. That'sit. Right loves no down nothing,
just a math thing. And Icontinue to do that. I will

(21:52):
absolutely I will continue towear a mask if that's what the
staff is required to do. I'mmore than happy to do that. And
he said, I don't know. But we'regoing to fix that. And he did.
And he did.

And there's so many there's so many
regulations like that there'sthere's not enough regulations
in other areas that needregulations, and then there's
over regulation on things thatdon't even make sense, like what
you just said, which is so it'sjust it doesn't make any sense.
It's it's it's it's justcounterintuitive. It and, and

(22:24):
hypocritical, right? I mean, Iwhen my was good, when I would
go to visit my mom, I couldfinally get in there as her
essential care as she was, youknow, getting worse her her
health. And, you know, there wastimes where they would have
those the yellow zone up,because there would be an
outbreak. But there was nodifference between the people

(22:48):
going in there. And out ofthere. It was just

Don Priess (22:50):
optics somewhere.
Yeah. So I had to give big gownsand the mat and others just came
in it did there was no

there was no it was all just poppin and
like Don and I we always laughabout because you know laugh in
a not in a good way. But youknow, when we got to visit my
mom during that time, it waslike, half the time there was a
sign in sheet where they takeyour temperature and you'd have
to show your COVID tests andeverything. And the other times
there was nobody there who justwalk in, you just walk

in? Yeah. Well, you know, what I've said all along
is the the truth of the matteris, they didn't work. It didn't
work. It didn't work didn't keepthe COVID out of the facilities,
it didn't. So we needed weneeded to not only did we lose
people because of COVID in thefacilities, but we've lost
people from failure to thrivefrom people on the wheel to

(23:40):
live, you know, and you

Don Priess (23:41):
know, if it was more, do you know if those
numbers were more on failure tothrive than they were for?
COVID?

Yes, that's a very good question. And that's not
easy. That's not informationthat they'll easily release,
right? They don't want to see,but that's literally what it
says on the death certificatesis failure to thrive.

Oh, by the way, I have an issue with
failure to thrive as a as a youknow, as a go diagnosis for
death. I mean, I you know, andI've been posting about that
too, because, you know, I heardthat ad nauseam about my mom,
she has failure to thrive andshe didn't have failure to
thrive. That's it's a blanket,you know, kind of statement that

(24:20):
that? Yeah, yeah. So, you know,failure to thrive. That means,
you know, you tortured somebodyby making them be in isolation
like you would a prisoner andputting them in solitary
confinement. Well, that's

Don Priess (24:35):
the thing is the ultimate in punishment for a
prisoner is putting you in cellis to isolate you. That's the
worst. That's the worst. So whatare we doing?

What are we doing I mean, who who who would
brilliant idea was that this isbut but you know what it does
marries it bleeds over into thebigger problem, which is quality
of life instead, right? SoThere's a there's some kind of,
there's some kind of misc,misunderstanding or

(25:06):
misinterpretation of whathealthcare is because healthcare
is all everything. It's it'swellness. It's it's, you know,
absolutely inside and out. Andyou can't have one without the
other babies don't survivewithout being touched. Right?
You can't. That's why nurses,that's what they have people

(25:28):
that come in, they pay them tohold babies that are in, in the
NICU, right? Because babies needto be held to be held short,

it's such an human instinctual thing I was telling
a story just yesterday about awhile I was there washing dishes
and one of the A friend thewoman lived there in the same
facility as Steve, her husbandand I weren't as in a group
support group together. So Iknew them. Well. I knew Kathy
well. And as I was leavingSteve's room one day, the other

(25:58):
visitors were other familymembers were not allowed in and
I saw Kathy going into anotherpatient's room. And I was
calling her out. And she calledlet me come walk with me. And
let's, I'm going to take you toyour room. You know, we look out
for each other's family memberswhen you're right. I mean, and
so I she comes out and she andshe, she ended up dying. I
actually looked it up yesterday,she she died six months after my

(26:19):
encounter with her. So she wasyou know, she was in pretty bad
shape. And she walked up to me,and I was walking her to her
room. And she stopped and shelooked at me and she said, Will
you give me a hug?
Yes. And I almostAnd I almost do it. I kind of
looked around to kind of see Isanybody else is there anybody
here who's gonna see me and I'mgonna get in trouble for giving
her a hug. And I did it. I justgave her this most amazing,

(26:42):
wonderful hug. When I got thecar. I called her husband. And
I'm like, I just want you toknow, I just gave you that she
articulated it a woman in in,you know, final stages of
Alzheimer's. That's right. Canyou give me a hug?

Yes. Tell I'm getting chills.

Don Priess (27:03):
All right, she needed she needed that more than
anything. She didn't ask foranything else. Can I just say
the most

Can I just before we move on from that is
like how, how profound that is,for everybody that that they the
bias against first of all ages,and then the bias of Alzheimer's
and dementia that that is in ourhealthcare system built into it,
that they're not there. There.
They don't exist, because theycan't because they've lost

(27:30):
skills, right? So it doesn'tmatter. It doesn't matter. But
the fact that my mom after threemonths when they said she had
failure to thrive, and we'retrying to just not take care of
her, which is why I'm doing thisdocumentary. She Dawn was in the
room. And we you know, I wasalways doing a dog and pony
show, I could get her to laugh,you know, we'd sing but out of
nowhere, and she hadn't spoke inthree months. She just said I

(27:53):
love you perfectly.

Don Priess (27:59):
And she never said anything else after that. After
that, just other than

I got it a laugh. We got her to you know,
she would go you know and likesing and kiss.

Don Priess (28:08):
Never said any other words before it

was it. But I'm telling you, if you if that
doesn't tell you that they're inthere, and for that woman to say
will you give me a hug? And Itold my mother this too. I said,
What a feat you just did. I knowhow hard that was for you to get
those words. Find him. Bringthem on down, get those synapses
going and get it out. And shedid that because she needed it

(28:33):
so much. And my mom needed totell me that she wanted me to
know that.

And you'll never forget it. I mean, it's just as
powerful. Right?

I was like, I was in tears. Donald tell you
I go she just gave me thegreatest gift ever. Right? That
die. No, my mom. She was like,god dammit, I'm getting I gotta
tell her because she I know her.
I know her. And I said, Mom, youdid that you did it. I was so
happy. And so proud of her.

Don Priess (29:01):
And if either of your mom or this other woman
were completely isolated, neverI mean, they wouldn't have
anyone

would have been dismissed because Oh, she
has Alzheimer's that she was atthe end of her Alzheimer's.
She's, of course she's. She'slocked when there she's still
alive. And guess what? Sheneeded a hug.

Right? That's right. And I almost didn't do

I did right. I'M SO GLAD YOU DID.
it.

I might get in trouble. I might get in trouble.
Like, you know what, screw this.
Right, the best hug I have evergiven anyone ever. Ever Forget
it.

You won't.
You will never forget it. I willnever forget her.

at her funeral. I told the story at her funeral.
Because it's just something thatit was it just tells you the
instinctual nature of touchingeach other and holding on to
each other, that we don't evenhave to realize what it what it
means. It's just part of who weare. And it's just the base

of men.
We're social. We are that's whatwe are We need connection.
That's what keeps. That's whypeople die. We need connect
connection. And I told the storybefore but there was a group of,
of 90 year old, you know, theywere the cool click at the
facility. My mom, was that,right? They were all they didn't
have. They didn't have dementia.
They were all you know. Cool.
Cool as hell. Oh, and every timeI would sing with my mom, when

(30:20):
my mom could still sing, theycome over up Susie singing Come
on, you know, and like, theywere right, done. They were all
like, they were like the coolclique. And it is heartbreaking,
because every single one of themdied during COVID. And they were
all separated. They were allseparate. That was their

(30:41):
lifeline was each other.

Don Priess (30:45):
And they were so vibrant, and so vibrant.

We loved them. Yeah. And

Don Priess (30:53):
to know that they were all just then basically put
in solitary confinement. To whatend? To what end?

I remember about Steve that he has a terminal
illness. Yeah, he's going todie. What am I saving him from
it?

Don Priess (31:07):
Bill? This Yeah, it's not about the amount of
days. It's not the amount ofdays it's what happens in those

days, I mean, those days that I'm missing where his
very best days, and you know, hesaid he's gonna decline tomorrow
and the next day and the nextday? He's,

yes, yes.
Yeah,that's me chills all day long
today. I mean, exactly. You'rejust hitting me right where it
is. I mean, you're, you'rearticulating it beautifully. I
mean, it's, it's exactly that,like, I feel so robbed. From
that year and a half, whatever.

(31:46):
Year in

Don Priess (31:46):
two months. Yeah, whatever it was.

And even in even though I got to see her
once that, you know, with 13 anda half months, then it was
another month before they let ussee her again, because you had
to sign up. And it was like theyonly had so much staff to like,
oversee us to make sure weweren't pulling our masks down.
And so I didn't really get tosee her until she got so ill and

(32:11):
went into the hospital

Don Priess (32:12):
from vanced. At that point, yeah,

that was from the wound because she was
being neglected. But, you know,that's the thing. I feel robbed.
Because I and I was, I wouldtell everybody the same exact
thing. I'm not delusional, Iknow my mom is going to die.
Sooner than you know, I want andI know that that's why I want to
love on her now. That's theurgency of that is the urgency.

(32:37):
This is why her year of life isactually more valuable than
someone who's 40 years old. Havethey got a lot of years ahead of
them? She doesn't. Right,exactly. And it's meaningful to
us. And it's meaningful to her.
And if that's not important thannone of our lives are important
then because we all are endingat some point.

That's exactly right. Right.

So can I want to pivot?

We could talk about this all day long.

Don Priess (33:09):
But I want to do you talk about it every day?

Yeah, we all we do. I talk about it all
day long, too. I saw a post onInstagram that Mary wrote about,
I don't know, two weeks after,after Steve passed away. And it
was just really simply, youknow, now what, and I really it
hit me so strongly because I mymom had Alzheimer's for 16

(33:36):
years. And so I was hurt. Imean, my stepfather passed away.
Eight years ago, 10 years ago,Don, I'm trying to remember but
so for the last 10 years of herlife, I was really her person. I
was her person. And that's along road. And I, I remember,

(33:59):
and especially that concentratedof this past year, was so
concentrated. And, and I thoughtwill and not that it was my
whole life. I mean, I havechildren, I have a career. But
my mother is was I was I feltlike I was her mother and it was
so important for me to make surethat she was happy and healthy

(34:24):
and and in the best way that shecould be. And then what and then
she's gone. Right? And there'sso many mixed emotions with that
and what do you do and how doyou how do you move on and and
keep your life as significant asit was so throwing that to you?

That's I'm figuring that out. We're three and a half
weeks into this. I've been acaregiver for Steven his parents
for decades. Certainly for him,his father died Two years ago,
and a week or so it'd be twoyears ago. And so I was his sole

(35:05):
caregiver as well. I'm, for thefirst time in decades, I'm not a
caregiver anymore. And that's aweird thing for me to sort of
accept or experience, I don'tknow how to not think about I
mean, for, for me, where thistime that we're talking right
now is the hardest time for me.
Because this is when I spenttime with him, I went with him

(35:27):
in the evenings. And I mean,there was never a time I was at
home. At this time of day, I wasalways with him when the sun
went down, and got him tuckedinto bed, and then I would come
home. And so every day, manydays, my car, even the GPS on my
car actually says rose Castle itdear What I had to go in, and I

(35:48):
actually removed it. Because Ididn't like it popping up every
day when I backed out of thedriveway that it's telling me
that that's where I normally goat this time of day, you know,
it's 11 minutes away for me toget there. So it's a real sort
of shifting in a mindset of ofconsciously doing something else
of making myself get out, take awalk, get some fresh air, you

(36:09):
know, meet friends do thingsthat show I'm not just sitting
here in the house. You know, Ilost I lost my parents, both my
parents young, I was 17 When myfather died, I was 29 when I
lost my mother 30 years ago, andI learned a long time ago that
okay, this is gonna sound reallyweird, but I actually appreciate
and like grief. Because I, Iwant to cry, and I want to miss

(36:34):
them. And I want to feel it inmy soul that this person who I
gave so much to and who was sucha huge part of my life is gone.
I want to feel that. And so Iwant to cry and I I am and so I
do so I'm I'm taking it, youknow, I Wednesday of this week
of this past week was a reallyhard day for me, I spent most of

(36:56):
it crying. I woke up Thursdayfeeling so much feeling alive
again, it was a beautiful winterday here, you know with it. I
mean, I'm in Florida. So it'syou know, 70 degrees and not a
cloud

Burr. Burr!

Or perfect kind of winter day, and my life's good.
And I and I know that I know, mysister sent me a text and she
said, um, you know, I'm sorrythat you're so sad. But she she
wrote, but I know because that'sthe way mom raised us that
you're going to be okay. And Ido know that I do know, the only
way through this is smack dabdown the middle. And the only

(37:36):
way I get to the other side isif I experience it right in the
middle. If I tried to takedetours and try to hide it and
and not let it be a part of mylife right now, then, then
that's not good for me. And Ineed to experience it. And so
that's what I'm doing thedecision now is, you know, what
am I going to do with my timewith my advocacy? Right? I mean,

(37:58):
there's so somebody said to me,Mary, the, you know, the nursing
homes need such huge reform. Youknow, maybe that's the next
thing. And, you know, I don't Idon't know yet I do know this
visitation is we're not donethere. Florida, I'm working on a
constitutional amendment inFlorida. The head of the nursing
home association here told himafter we passed a law that went
into effect, it's called the nopatient left alone bill went

(38:20):
into effect July 1 in Florida.
No patient in a hospital or anursing home or long term care
facility will ever be left aloneagain. After that was passed,
the head of the nursing homeAssociation told a reporter that
I've become very close to that,well, as soon as we get another
governor, if they don't like howthis bill is working out for
them, we'll just get a new law,we'll just we'll get rid of that

(38:42):
bill and get it and make it goaway. If I do a constitutional
amendment, it can't go away. Andmy caregivers for compromise
group in Texas has done aconstitutional amendment in
Texas for their bill. And sowe're going to work on that
we're going to get aconstitutional amendment here in
Florida so I can be sure withour large elderly population
that stays in effect, and then Iwant to do this federal bill. I

(39:03):
want it to be consistent. Partof the big problem is everybody
in every state is doing itdifferently. Yeah, but
facilities across the streetfrom each other that are
allowing different things. Andthis has become a it's an
interesting, it's been aninteresting thing to watch the
power struggle the way we'vebecome adversaries with the
nursing home associations withthe nursing homes themselves.

(39:25):
Instead of being able to worktogether and do it together.
We're doing it. We're like we'reagainst each other. And that
doesn't make a whole lot ofsense to me. So I am, I do want
to work on this particular billand then and then we'll see what
happens. We'll see what whatcomes up next.

Don Priess (39:43):
It's so counterintuitive, because you
figured, okay, these reformswill benefit the nursing nurses,
you're going to have happier,healthier patients easier to
take care of. So for them to bepushing back on this makes no
sense

gets power, and it's really my buddy telling
them what to do and how they'regonna run their business. They
want to do it exactly. Andmoney,

right? And it's touching, it's touching,
right? And

money is what drives all of this, isn't it? I
mean, even even though you know,our politics, so that's it. And
it's, and I'm not, I'm notwilling to accept that not, not
when we can work together, wecan do a better job of listening
to each other, and making it abetter place and, you know,
better arrangements for ourloved ones that does benefit

(40:33):
them, I don't care if they makemoney, I want them to make
money.

I don't care if they make money either,
but it has to be done, you know,with with a conscience, it has
to be done, you know, like, youknow, I would like to see as
much energy that goes into prolife. Right for pro life. Right.
Okay. All right. I mean, let'ssee that. Let's see that

(40:57):
groundswell happen. And as muchas it does the other way.
There's so many politicians thatare, you know, hanging their
hats on pro life,

if you've never been in one of these places, if
you've never seen what thislooks like, you know, if you've
never experienced it from theinside, it's very hard to
explain to people what it lookslike, and what's really going on
in there. You know, when there'swhen there's not staff, you
know, I, there's, I can't getanybody to one of the last days
we were there, gentlemen fell,and I, you know, I couldn't find

(41:27):
anybody to help me get up. And Itook a picture of him and I sent
it to the main to the head ofthe Florida Division. And you
know what he did? He scolded mefor taking this man's picture.

That's right. That's right.

Don Priess (41:42):
That's what's important. That's what's
important. Yes, I

said, I'm trying to tell you what's happening, do
you know what's happening

because very, they do know what's
happening. They're very aware ofwhat's happening. They, they,
that's what's the problem is,it's systemic, and it's very,
very, it's, it's, it's beenwoven so tight, that we need to
break it up. But it isn't goingto be, you know, we can do we

(42:13):
can do what you're doing is, isgreat because you're, you're
dealing with what's happening,like, immediate, like this
immediate thing that and, but weneed a we need 10,000 Mary's
with to to address the other10,000 problems that are is just

(42:35):
as bad as the isolation problem.
And you're just one person.
That's why and you so I'm, I'mbeing very so on my soapbox
today. But, but, but becauseit's true, we do and I'm not
being I'm not trying to. And I'mnot I've never been a political
I'm not like the girl that wasyou know, marching down, you

(42:57):
know, yeah, I went to the feetto me too movement, but only
because it was fun. Mygirlfriend's going to art. You
know, we went, it was fun. Imade the hats for my friends.
Right? But this this is, guysthis is so this is so horrible.
It's close. You know, I'm gonnaget in trouble for saying this.

(43:18):
Go ahead. I'm sorry. It'sgenocide. What's going on? I'm
just telling you, there'sageism. And people are suffering
and dying. needlessly. And andnobody, nobody knows it. Because
they have not. They don't knowit. You don't know what you
don't know. I didn't know it. Ididn't even know what a bedsore
look like I tell my mom hadstage four.

Right. I didn't know what I'm trying to say to
all the caregivers forcompromise is what my mantra is
now. And what I say my purposesnow is to empower caregivers, to
boldly advocate for their lovedones. So they look back with no
regrets. Right. And it'sexhausting. I mean, there were
days at the very end, when Stevewas me. He was getting

(44:00):
aggressive with the staff and sothey just decided they weren't
gonna brush his teeth everagain. That's right. You know,
they're gonna punish you. Hedoesn't want his teeth brushed.
Are you kidding me? Right? Am Igoing to have to argue with you
every single day? And we'regonna have the same argument.

Yes, I am.
Yes, you are. And I did it.

I'm doing it. I'm gonna do. I'm exhausted. I said
that one of the last times. Iwas arguing with them. I said,
you know, I mean, I startedcrying. I'm like, You think I
enjoy this? Do you think this iswhat I want? You know, I want my
life back. I want my husbandback. Yeah, that's, I want to go
and be with my husband and dothe things that we used to do. I
don't ever want to step in thisplace ever again. I hate this

(44:40):
place is right. I don't thinkthis is what I enjoy. I have no
choice. I have to fight for him.
And I'm going and listen, it'sme. Right? I think what they're
doing for people to people whoaren't like me who are in there
every single day. What are theirteeth looking like? What was the
last time they were bathed? Allthese things? anyways, this
happened, what happened to Steveand I was there

every day, I was there every day for my
mom. And every day, as you know,I don't want to get people sick
about it. But, you know, theyput my mom on NPO for no reason,
for no reason other than theywere understaffed. And I had to
come and pull chunks of Dr.
mucus out of her mouth everyday, they only let me give her
liquid on a sponge to suck at,they wouldn't do it, they

(45:28):
wouldn't do it.

Don Priess (45:30):
And then you become the enemy. I would walk in with
Suzy and you know, I wasn't theone complaining. And they looked
because I was with Suzy, theylooked at me, like, they wanted
to kill me, because she wasadvocating, and a very, very
nice way. Honestly, Suzy was,you know, I mean, she was
strong, but she wasn't, youknow, mean, or, or you know,

(45:51):
vicious, but they would theywouldn't even you'd say hello to
them, they wouldn't even sayhello back, they would just turn
away from you. And that,

you know, when you're nice dealing, we get
a lot, you get gas gettingnothing, you get gas lit. So I
would say Hi, you guys. I knowyou're understaffed. It couldn't
be possible that we could callthe wound doctor, whatever they
like. Yeah, yeah, we'll lookinto that. We'll look into that.
Thanks for letting us know. Youknow, so that doesn't work.

No, what you're saying is so true. It was it was
like that at the end. I couldtell. And we were we were in we
were in. And listen, Steve wasin a good facility. Right? I
mean, let me see.

My five star. Yeah. So it doesn't mean

anything. It doesn't I mean, where I just, I
couldn't believe that they'regiving me a hard time because
I'm trying to do somethingthat's in the best interest for
him. I mean, we were on ourseventh Executive Director, and
the three and a half years thathe had been there. And when I
would say that the new directorwould say, You know what, I'm
sick and tired of you throwingthat my face. I'm not doing it

(46:58):
your face. I'm simply tellingyou, we've had seven of you.
Okay, I know how this works. Soyou're act like that's not a
fact. It's a fact. And you haveto understand that your staff
number one, and your residents,families know that you may be
gone next week. You know, that'sjust a fact. You know, the

(47:20):
person, I'm the bad personbecause I kicked out. I'm not
throwing that up in your face.
I'm simply saying you'rechanging rules for no reason
when they don't mean it's just amess. And that constant battle,
I can tell you, I'm I am trulyhappy to be over that internal
physical battle that I have feltfor the last couple of years
right.

Here, girl, let me tell you something, my
mom, like you didn't want you. Iknow you didn't want Steve to
go. And you want. I didn't wantmy mom to go. But the last week
of her life, I was like I thiswas my worst nightmare was to
say goodbye to my mommy. I waslike, just die, please. Because

(48:05):
I cannot see you go through thisanymore. Right? That's exactly
because I couldn't make any morechanges. I couldn't help her
anymore. And I sat therewatching them,

isn't it so sad just said place to be as their
as their kit caregivers, theirdaughter is their wife to be in
that point. Where I know, Imean, I've said to his kids, I
mean, I have three step kidsthat are all grown and, you
know, said to them, the truth ofthe matter is as much as we miss
him, we don't want him back likethat. We don't want to be back.

(48:39):
We don't want to be back in thatplace. We don't want to have to
be living like that again, youknow, so it leaves us at peace.

Yeah, I remember going back to get her
stuff. And I wouldn't I didn'tlook at anybody there. And I
know that so many of the of theproviders and the CNAs and the
people that are in the trenches,their hands are tied. They're
looking over their shoulders,because it's called coming from
the top right.

That's what you know, when I can't find anybody
when I'm hollering for somebodyto come help me or we wouldn't
be locked in is when I couldn'tget out to go home until I found
a staff member who could unlockthe door and let me out and so
sometimes I'd be sitting there1520 minutes and you know, when
you leave the room at eighto'clock at night, I want to get
the hell out of there. I want togo home but I do I don't want to

(49:27):
just have to sit there and watchall these other people kind of
wandering around like zombieswhile one staff member it's not
her fault she's in the room withsomebody changing them getting
ready for bed, it's not theirfault. But here I am just
sitting here for 1520 minuteswaiting patiently for somebody
to come out of a room so we canget the hell out of there and go
home I mean so many nights youget in the car and just cry you

(49:51):
know so many parking lot andjust cry

me too.
This is how many yeah awful andI'm guarantee people listening
are have done the same thing.
This is why I'm telling youfolks. And you know, I have
nothing to gain from this, youknow, personally from the
documentary but and you likeyour fight what you're doing,
you know that we have to dothis. We have to get this done

(50:16):
in a big way because it ishorrible. It's horrible the way
it is right now. It's notsustainable. It's only going to
get worse. You know, CMS isgoing to make an announcement in
February about staffingregulations. There's going to be
new minimums, but the nursinghome lobbyists are going to be

(50:37):
fighting against that. And, bythe way, we've had regulations
in California for you know, awhile now and there's no
oversight. So guess what? Itdoesn't matter? Correct. It
doesn't matter. Because I saidto the director of of our five
star facility, I said, I knowyou guys are understaffed. No,

(50:57):
we're not. Okay, but your CNAsare telling me that there's
they're exhausted and asking meto help turn my mom. While Vince
shouldn't be doing that. We'renot understaffed. Okay. There's
no pillows to even do it.
That's, that's right. There's,you know, they were stuffing
dirty blankets to prop my mom upand I go, I'll bring in, I'll

(51:20):
bring in pillows. I've got a lotof pillows at home. I came in
with like bags and bags ofpillows, and like, what are you
doing? We don't need those. AndI go, but you do because they
don't have them? Oh, well.
That's ridiculous. We don't needthem. It's just the last

month of Steve's life. I actually hired my own
CNA to get you eight hours, daysa week to brush for you. To
close to be sure we doubled theamount of depends that we were
using. Okay, which will tell youright how often what's going on?
Yeah, right. That he'simportant. Yeah, at least bathe

(51:59):
down, you know, a sponge bathevery day. shaved, knew he had
his facial hair. He has neverever had facial hair ever. And
I've known him 30 years. And hehad this long string, you know,
because they just they justweren't doing it. They weren't.
And they said it was because hewas being difficult that he

(52:20):
didn't want them to do it. Well,my own CNA did it. She was
getting shaved. Yeah. Yeah. So Iknew it. I'll tell you as
expensive as it was. I'm so gladthat I did it for that guide.
You did it to a level that hewas just being cared for at a
completely different level. I'mglad

Don Priess (52:39):
you're unfortunately most people can't do that. Yeah,
unfortunately, most peoplecan't. Most people can't.

Yeah, yeah, I just I, I actually had someone
in her ad shoot. Her husbanddied of Alzheimer's a couple of
years ago, but they're verywealthy here in Los Angeles.
They live in these high rises.
And I interviewed her and shesaid, I was so fortunate that my
husband made enough money that Icould get an apartment, right
across the hallway. I hiredthree, you know, nurses to be

(53:04):
with him around the clock. Andhe lived the his last, you know,
year, whatever it wasbeautifully. And she could go
back to her own apartment sothat she could get her strength
back again. It was like, but shesaid, I know that I am such a
small percentage. It's notreality. Yeah. Right. Right. So

(53:24):
this is this is not a way tolook forward to getting older.

It scares me.

It scares me it should.

I really, it is something that I'm just sort of
coming to terms with. I justturned 60 in October, and it is
something that I think aboutthat, you know, I need long term
care insurance, but

Gol is not that good.

Don Priess (53:49):
Right? And it's not it's not like it used to be.
Yeah, my dad used when he firstbought long term care it was for
the life it was then suddenlythey said, Oh no, no, we are now
changing that now. It's cappedat 140,000. You know how fast
that 140,000 goes. It soundslike a lot of money. It ain't
and they only divvy it out insmall portions. Every month,

(54:11):
they would do he'd get like 2900a month, which helped. Thank you
know, it was great to have butit's not the it's not the
answer. What do you feel are thechances for true reform, you
know, up and down the line? It'sit's I mean, you don't want to
be fatalistic and say Oh, well,there's no chance it's too big.
What What can we do? You'redoing it you know, but in a

(54:34):
specific area. There's it's sobig. What can we expect true
reform?

I don't have much hope for that, to be honest with
you. I really don't I mean, inthat said, I feel the same way
about Alzheimer's research,which is a whole different
topic. That I I'm verypessimistic about it. I just
think you've got too many peoplethat are making too much money
in both of those realms, by theway that are not going to be
willing to give that up. Do whatthe right thing is. And that's

(55:01):
what scares me about myself. Oh,you know, I think about myself,
what would I do if I got anAlzheimer's diagnosis? You know,
I mean, it would be? I mean, itis and I don't know, you know, I
mean, I do think that there arepeople I mean, I think that
there are people with with thebest of intentions. And I think,
you know, we have in our groupwe have, we find a lot of people
who loved one dies. And some ofthe group says, you know, I

(55:23):
can't, I can't believe wehaven't heard from Allison, you
know, in a couple of months,she's, you know, wants now that
her husband's died, she's kindof gone away. And I tell
everybody, this is a personalchoice, you have to choose what
you how it has affected you. Andyou can decide whether or not
this is such a proud, you know,a profound effect on me that I'm
going to continue to fight thisbattle or not, and there is no

(55:47):
right or wrong there in what wedecide to do. But there's people
like you and me, Susie, whoreally feel like that, and know
that there are things that canbe done to make it better. And
one of them was certainlycalling attention to it, which
is exactly what, you know, weboth have been trying to do in
our own projects. But and Ithink that's certainly a start,
and then you hope to when peopleare profoundly touched in their

(56:10):
own life, when we have thepoliticians that are going to be
affected by this in their ownlife, it certainly helps to get
them on board to do something.
Otherwise,

let me let me just add to that I agree with
you. And I want to say that thenature of being a politician is
very much like the nature ofbeing an actor, and I was
married to one for 14 years. Andas good as they are at their at
their craft, they're not greatas human beings, they're good at
what they do. So. So that said,even if it happens in their

(56:43):
family, it may not affect themthat much, either, is what I'm
trying to say. So what what willwell, what will affect them is
their ambition. And if that ourambition is looks like it might
be on the line, that's going toaffect how they make decisions.
So if we can shame these people,and if we can make it look like

(57:05):
we're going to take away theirvotes, or their support, and
everything else, that's the tome, you know, is what what I
intend to do. This is the natureof of ambitious people. So
whatever it takes, guys, we haveto do what we have to do, I may
have to hire a bodyguard, Idon't know.

Don Priess (57:28):
But I think that that, you know, you say you
don't have, you know, very muchhope for reforming, you know,
the entire industry. But I thinkwhat we can take is from what
you're doing, what Susie isdoing is to at least make it
better. And hopefully, if wekeep making it a little bit
better and a little bit betterand a little bit better, then

(57:50):
maybe that reform just is a it'sa long term effect, as opposed
to Okay, now, here's the news.
And I think so we have to wecan't we can't get we have to
hopefully remain positive. Andit's people like you, people
like Susie who are helping dothat. And so hopefully we can
take that away from from what'sbeing done. And

let me tell you i in the work that I'm doing
regarding visitation, we have tobe present, not only to hold the
hands and give the hugs, butthey need to know that there are
outside eyes that are on themwho are watching what's
happening inside of there. Whenthat when you lose those eyes,
when you lose the ability foranybody to hold them accountable

(58:33):
for what they're doing, thenwe're in big trouble. So I even
want to Yeah, is even right. Andso me being fighting to get in
it. This is at the very leastbeing sure that they're going to
be outside eyes watching whatthey're doing. And they're going
to be held accountable for theactions that they're taking with
our loved ones. Yeah,

mate. Yes.
Okay. I don't want to getnegative, but I mean, yes, we
need to be have eyes on them.
But as it is right now, the waythe industry is right now,
having eyes on them and havingthat oversight doesn't really
cause enough. It doesn't hurtthem enough, even when was
reported, you know, so it'sreally, right. So so becomes our

(59:17):
responsibility to do damagecontrol, which we're not in the
position to do. And we need itthat we need that oversight
built in so that we can go to anabutment and go, here's what's
going on and that ombudsmanactually has the power and isn't
just a figurehead in Florida.

They're useless and are useless. I don't talk to
them. I've never talked to them.
There's no reason for me to talkto them. There's absolutely
nothing.

It's a waste of money states.

It's completely different. There are some states
that they are actually useful. Imean, I think Connecticut I
think New Jersey may haveMedicaid.

Yes, that's because my Murray had painters
there. That's why she's one ofthe best women in the whole
world and she As she, she'sgoing to be in our documentary,
but she'll tell you straight upstraight away. It's like, it is
not good. It is not good. Andshe is the real deal. She She is
right.

Mary Daniel (01:00:13):
She's worked a lot with our group, our Connecticut
caregivers for compromise. She'sawesome.

Susie Singer Carter (01:00:17):
She's, she's fierce. But we need fierce
people. Let's go, who else isfierce out there? Help us. We're
just two little girls here. Comeon, and one guy, come on, we
need your help we and we don't,you know, it's got not going to
be radical, we have to reallyjust be level headed. At no,

(01:00:38):
this has got to change,

boldly advocate.
That's what I say it's boldly,it's not just you know, it's
doing things that may be alittle bit more out of your
comfort zone. But it's boldlyadvocating, because not only
will excuse me make a differencein these facilities and in the
lives of so many people. Itmakes a difference in my life.
Right that I when I stood atSteve service a couple of weeks
ago, and I said to them, I standbefore you with no regrets. I

(01:01:03):
stand before you being able totell you that I did everything
in my power to care for him. Andthat's an incredibly powerful
gift that I have. I will keepforever

I with you.
Amen. I feel I said the samething. I said one thing, I don't
have an any personal regrets. Idid everything that I could do
for my mom. And, you know, I wasthere with her to the very end,
I got to snuggle with her aftershe passed. I mean, I I did what
I wanted to do as best as Icould within their rules. Exam.

(01:01:39):
And I don't have any regret whatI regret is the system that
we've created that's so heinous,and that it took me this long to
figure it out. That's the sadpart that we and you know, and
you and I and Don and and yourcoalition, our

plan is to be sure that when it's time for us to go
that we have no regrets and alsoworking to do what we can do to
change that system.

Let's do it, everybody. Let's do it.
Let's do it. Do it. Do it. Allright. Well, thank you so much.
This was a wonderfulconversation. I know what now
for you. Now. I know what nowNow what will I'll think? Yes, I
know that you aren't going tostop. So I've got some

I've got some work to do. So some

work to do.
Yeah, yeah, we'll have to calleach other accountable. Not that
we need it. But you know,everyone, it does get tiring,
doesn't it? Sometimes?

It does. It does, that's for sure. But it's you
know, it's it's I don't know,it's kind of like I've worked my
whole life to be right here atthis time. You know, I feel like
that I was just the right personfor the job and still am and so
what

better what better job? Right? What better?
What better gift are you goingto get from it? What what I
think about it, I mean, I'm afilmmaker, I want to do my my
comedy films and my lovestories. And yes, I want to do
those are great. But at the endof the day, what am I going to
be most proud of? is somethinglike this, that that really

(01:03:18):
makes a difference. That's,that's what else can we get the
best gift we can give and get.
All right. Thank you so much.
Thank you so much. It's so greatbecause it all started with love
with your husband. It allstarted with me with my mom. I
love her so much. I will alwayslove her so much. Why is it so

(01:03:39):
profound?

Don Priess (01:03:40):
Well, because as we all know, and if we don't know
by now, we just don't know thisis that love is powerful. Love
is contagious, and Love ConquersAlz. And we thank everyone for
listening and watching today. Ifyou like what you heard,
subscribe, share. Take care.

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