Season 2, Episode 5: No Country for Old People: one person’s tragedy is another’s advocacy

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
36 hours later, she ended up in the
hospital
with a stage 4
bedsore that I was never told about,
sepsis,
10% kidney functioning,
pneumonia,
massive dehydration, and a a severe UTI.
Wow. So on January 17th,
that was the beginning, and she died on

(00:21):
July
17th.
Welcome to the Death Happens podcast,
an insider's guide to dying. We're your insiders.
I'm hospice nurse Penny. And I'm Hallie, hospice
social worker.

(00:42):
Today, we're going to have on a
mother, documentarian,
an advocate,
and a podcaster
named Susie Singer Carter, and we're gonna get
to know her and all of her journey.
But first,
we're gonna talk a little bit about the
drama,
if you will, of Facebook
and really focus on how perception is reality.

(01:04):
Penny, you've had firsthand experience with this, so
give give it to us. Yeah. So so
there's a Facebook group that's called murdered by
hospice.
There are several 1,000 people who are members
of this group.
They have targeted me and other social media
influencers who are working in the hospice profession.
I don't think they've come after you yet,
Hallie. I think you have a low enough

(01:25):
profile at this point
to where you're leaving you alone,
but they have targeted me. They have taken
pieces of my videos,
out of context
and posted them on their page. They
come to my account and,
leave really negative and hateful comments,
often. I do a lot of blocking.

(01:46):
Mhmm. So,
you know, the thing is these people have
had bad experiences with hospice,
which is actually what we're gonna talk to
Susie about today because she's also somebody that
had a bad experience with hospice.
And while it's important to recognize that, you
know, perception is reality. And if you've had
a bad experience,

(02:07):
that that's your reality and that's what you're
gonna think of
all hospice and all hospice workers
because that was your bad experience. And to
you, there is no other
there is no other experience.
That being said,
I have noticed that some of the people
who are in the murdered by hospice Facebook
group are people who did not have

(02:29):
the legal authority to speak on behalf of
their person.
Mhmm. And so when you have somebody
who is not the medical POA, someone else
is making decisions, either another family member or
a guardian ad litem,
and those decisions are not what you agree
with, then your perception
is going to be

(02:51):
that that person has
caused their death if they're choosing for them
to go to hospice, and you didn't think
that's what they should have, or they're choosing
no treatment and you thought they should have
treatment. Well, and even when someone is hasn't
been in their life for a while, even
if they are the power of attorney or
a legal decision maker, and they haven't been
around them for whatever reason.

(03:11):
And now it like, they're slowing down. They're
coming to their end of life, and they're
not eating as much or they're not eating
at all. Oh, now we're starving them. You
know? So absolutely. Yes. Understand that. Yeah. And
we actually touched on that in our last
episode
about how somebody could be,
you know, far away, and they haven't seen

(03:32):
that person for a while. And and they
are the decision maker. And I've made those
phone calls, especially when I worked in the
hospice care center.
When I would call somebody and I would
discuss with them the fact that their person
was dying and they would be like, what
do you mean they're dying? I just saw
them 6 months ago and they looked great.
Mhmm. People don't understand that there are disease
processes that can really

(03:54):
escalate very quickly to end of life.
Yeah. We've had people come on hospice that
got their diagnosis 2 weeks before we met
them, and they have only a few weeks
left, and they they're already in, like, stage
4 or whatever and didn't have really any
symptoms or had mild enough symptoms
that they didn't go get checked out, and
it's too late or they're really aggressive symptoms.

(04:15):
Yeah. Same. Same. I've had multiple patients who
came to our care center who had just
been
diagnosed with their disease and and not even
just cancer although it seems to be more
common with cancer, but I had a patient
who stroked out in the doctor's office and
and the doctor's office. And so that's what
I was gonna say. A sudden event, a
stroke, a heart attack, etcetera, even COVID.
Yeah. And then like we talked about with

(04:37):
Andrew in our last episode, you have the
chronic disease
people who fight it, fight it, fight it,
and then the family can't accept the fight
is finally one that they're losing.
Yeah. So, yeah, so we have that. But
it really is unfortunate that that group exists,
and that they are
not open minded enough about,

(04:57):
hospice to understand that their experience is a
singular experience and that there's those of us
who work in hospice
who know that that's that's, you know, even
if what they went through with their person
was actually what happened,
which is is what Susie's gonna talk with
us about today even if what what happened
really did happen and it's not their perception,

(05:18):
it really is the reality
Yeah. That that's a singular experience. It's not
it's not the norm. It's it's
it's really a a small percentage of people
who end up having that kind of experience
where the hospice was really bad. Mhmm. And,
you know
I think that's fair to say about anything
across the board. Right? You go to a

(05:39):
grocery store and you have a bad experience.
I'm never going here again. Or you, you
know, run into somebody politically and you have
a certain experience. And
now that is your whole world view.
And so I think it's just human nature
that we do that, but
it is something that I hope we're able
to work on eventually is to

(06:00):
to accept and grieve and mourn the thing
that happened and also
understand that that is not 90%
or even,
you know, 50% of how things go generously.
It's not even 50% of how things are
going. Right. Right. And and
grief is is a factor here because oftentimes,

(06:20):
it really is misplaced grief. Absolutely.
Absolutely.
But if you're grieving
and you have a grievance
against an organization,
don't create a fucking platform
on Facebook called murdered by hospice
and go after people like me who are
trying to change, you know, that
perception

(06:41):
of hospice because it's really not real.
Mhmm. And I have had them,
like, really attack me and and
wish death on me. I've actually had somebody
who sent me an email and,
you know, wished me that I would die
from a ham sandwich. Well, they call Haldol
Ativan and morphine, they call it a ham
sandwich.

(07:02):
And so she,
like, went through the trouble of emailing me
to say that she hoped that I would
die like that from the ham sandwich or
whatever, which actually doesn't sound like a bad
death to me.
But, you know, I I was just like,
I don't even know you. I don't know
you. I don't I've never met you. You've
never met me. Like, you have so much

(07:23):
hate in your heart. Yes. You know, like,
what It's gonna disrupt the grieving process, honestly.
You're gonna be stuck in that. Absolutely. Yeah.
Stuck in that for sure. And that's what
I see because I do go troll their
comments section. I do see this perpetuation
of this
their experience which then, you know, when you
relive something over and over how it can
just get bigger and bigger and bigger. Yes.

(07:44):
Yes. And that's what happens.
And, you know, I also wonder too if
they're starting to infiltrate other pages because I'm
a member of a hospice group on Facebook.
And today, there was a very long, long,
long, long post by somebody who was claiming
that somebody had made a decision for that
person to go on hospice and that hospice
isn't supposed to be for end of life

(08:06):
care. And, like, saying this stuff, I was
like, wait. What? You don't even know what
you're talking about.
And just everything that she was putting in
there,
it just did not
ring
true. It just Mhmm. Was like, that sounds
a little sus.
And I really honestly thought that this is
somebody from the Murdered by Hospice Facebook group

(08:27):
that's infiltrating the hospice group and trying to
put this
story out there that's just a story to
try to make hospice look bad.
Well, and that's what I do appreciate about
Susie and why we're gonna have her on
today is she is working towards advocacy. She's
using the terrible experience that happened with her
towards improvements for everybody. And so I don't

(08:50):
want people to think we're only having people
on that we love and we love their
message. Like, we want people to come on
that have had, you know, these experiences so
we can share, we can educate, and we
can move forward towards betterment for everybody.
Yeah. Yeah. I I appreciate that about her
too because that's not what you're seeing in
Murdered by Hospice. All they're about doing is

(09:10):
advocating to get hospice shut down. They're not
trying to
advocate for any kind of improvement whatsoever. And
hospice is,
I mean, we're biased, of course, but it's
a wonderful service and so many people benefit
from it. You know, it's a very, very
important, health care program. So many people need
it. It's just it's really

(09:32):
unless you die suddenly,
it's it's really one of the only ways
that you can die in your own home
and not in a hospital. You know? So,
of course, you know, we we just think
that everybody should have hospice, but also everybody
deserves to have good hospice care.
Yes. That's important too and getting rid of
the bad hospices,
you know. Also important, important to us too

(09:54):
as hospice clinicians. Absolutely because we don't like
to see
bad stories
about hospice No. Because that's what people do
call us murderers. You know? I've said that
many times. A bad review for any hospice
is a bad review for all of us
because Mhmm. People still think that all hospices
are the same, that somehow we're all one
hospice.

(10:16):
Right.
Right. Yeah. Yeah. We know that
just because it looks like a duck and
quacks like a duck doesn't mean it's necessarily
a
case of hospice. Right? Absolutely.
Different. Just like all health care programs are
different. All sniffs are different from each other
and Yep. Yeah.
Alright. Well, I think this is gonna be
a very interesting conversation, and,

(10:39):
let's do it. Let's do it.
Well, I think I can speak for Penny
and myself that we all agree that elder
care in America and probably in many other
countries needs a lot of reform.
And at the same time, we can hold
space for the fact that the majority of
health care and specifically what we work in,

(11:00):
hospice workers are trying to do their best,
for what they are doing and and their
heart is in the right place, but other
systemic things need to be reformed. That's why
we're so glad to talk to you, Susie,
today. So welcome.
And please tell us a little bit about
yourself.
Well, thank you guys for having me. This
is great. And
and and thanks for all the

(11:20):
information that you are putting out there because
it's important that we have this conversation. Right?
Yeah.
Yeah. So I'm I'm actually I I'm a
a filmmaker,
a a writer, director, producer, and and started
as an actress. And when my mom was
diagnosed with Alzheimer's,
16 years before she passed, which was in

(11:41):
2022,
it was when I got sort of, you
know, yanked into the caregiving
community. And I really
I really did a deep dive because I
really loved my mom so much, and I
wanted to try to figure out
after I just after I found out I
wasn't gonna cure Alzheimer's because, you know, I
had that delusions of grandeur for us about

(12:03):
a hot minute. And right? Like, we all
do. We're like, well, you know, we're gonna
really get this. Right?
And then I realized we're not that's not
gonna happen. So how am I going to,
you know, stave off this monster
and and make life as good as possible
for mom,
for as long as possible? And so I
became I did a short film

(12:24):
in 2017
called My Mom and the Girl, which was
Valerie Harper who plays my mom. And it
was really just a a way to show
a different side of Alzheimer's and
destigmify it and and educate a tiny bit,
but also, you know, show the humor, show
the the love, show the joy that you
could still find. And so and it's and

(12:44):
it's it's a very,
it's a dear project for me because it
still resonates. And we just were asked to
do screenings, and people are always so moved
by it and so
invigorated.
Like, it creates robust
conversation, which is the whole point. Right? So
that brought me into even more into the
caregiving community.

(13:05):
And then
2 years ago,
my mom was in a law was in
a,
long term care. She was in a 5
star nursing home in Los Angeles and during
COVID.
And that's when
everything spiraled down for my mother.
And the last 6 months of her life
are just
just horrific and just just a nightmare for

(13:28):
us. And Mhmm. I didn't know the long
term care.
I I didn't know that system. I didn't
I I it's something that we don't really,
you know, have it at conversations
with parties about Medicare and Medi Cal and
Medicaid and all those things. We don't nobody
really talks about it. And I was a

(13:49):
sandwich generation, so I had younger kids and,
you know, caring for
children and then my mom.
And so, you know, you're straddling, like, you
know, 2 different worlds. And
boy,
it just it it just at the end
of my mom's life, which we'll get into,
I I'm however you wanna talk, whatever you

(14:09):
wanna ask me, I'm I'm happy to tell
you. But, you know, that it was
it was so shocking to me. And and
so I felt like I was
on another planet. Like,
what kind of
what kind of world am I in where
there's so much
disregard for humanity?
And,

(14:30):
I
and when I began to really dig deeper,
and then I found out that this is
just a systemic issue that's been around
for a very long time and where there's
money to be made and where no one's
minding the cookie jar, there's going to be
nefarious
behavior. There just is people there are greedy
people in this world as many good people.

(14:53):
There's also bad people.
So and, you know, and mistakes mistakes get
made. And and,
and when people don't know, they don't know.
Not to be trite and write on that
meme, but if you don't know, you don't
know.
And and so my my philosophy was, well,
now that I know,
I'm culpable as well if I don't share

(15:14):
that this information. So that was the birth
of No Country For All the People, which
is a documentary that I'm work that we're
just finishing now
about the systemic crisis in long term care.
And so that's Well, I definitely wanna get
to all of this, all of those things.
That makes a lot more sense to me
now because I I had no Country for

(15:35):
Old People on the list further down. And
then as I was going back through some
of your videos and things refreshing myself of
your story,
I did see that other,
video with Valerie Harper, r r r I
p.
And,
Oh, she died? Yeah. Back in 2019.
She was that?
Oh, yeah. It's her it was her it

(15:57):
was her last performance in our in our
film. It was the gift that she left
because it's I I hope you watch it.
It's she's just
gorgeous in it. Just absolutely beautiful
in so many ways.
I will watch it. I I love Valerie
Harper. The last time I saw her, she
was on Dancing with the Stars, and she
was she had brain cancer at that time.

(16:17):
Yep. I she was fierce
because she was like, I'm not going to
my funeral before I'm ready.
I've had a great life. And now she
was like, listen. If I die tomorrow, I'm
fine. But why should I go if I'm
not ready? I'll go when I'm ready. Right?
And because I didn't even know that she
could still act. You know? I just thought
she would be so wonderful for this role.

(16:38):
And, boy,
she did embody my mom. She's a consummate
professional and a heart as big as
it's endless. Her heart was endless.
I am excited to see it. I I
unfortunately
didn't see that it was the movie before
I was doing the research this weekend. So
it's on my list for sure.
I'll send you a link. Yes, please. I

(17:00):
would love to narrow down and just kind
of get a more a better sense because
you do put a lot of advocacy out
and education and things, and so sometimes it's
hard for me to suss out down to
what actually did happen and and as much
or as little detail because I don't want
to retraumatize you either.
Just you said that she had been in
long term care and then the last 6

(17:21):
months were the worst. So how long was
she in long term care before that and
then kind of,
what happened? What went wrong? Right.
So when my mom okay. I'll try to
do this as brief as possible. The movie
that we talked about just now, My Mom
and the Girl,
there's a day in the life of my
mom when she lived with me for a
year. At the end of that year,

(17:43):
she went into memory care in assisted living,
but she was completely physically healthy
and, you know, was walking by miles a
day and, you know, holding court and singing,
you know, every Friday night for everybody because
she was a singer.
And, you know, just she was fine. And
then suddenly, she had,
she it is like she went overnight

(18:05):
to, like, a zombie.
And I had no idea. I thought it
was her Alzheimer's was progressing. She suddenly was
incontinent. She was in a wheelchair.
She was very unresponsive when before she was,
like, you know, she was she was holding
court all the time. Like, you know, hello.
How are you? You know? Are you single?
You know, it's just my mom. So

(18:26):
and,
her doctor, her GP got a hold of
me about
a month and a half after that. She's
still the same. And he said, you know,
I just had,
checkup with your mom, and she's on a
drug called Depakote.
And,
I was like, jeez. Do you know what
that is? I said, I have no clue.
And I was her conservator of person

(18:47):
because and, I wasn't told about this. And
he told me that it was a off
market drug to, you know, sedate
people. And it's often used in nursing homes
and that it it's a black label drug
for your audience, which means
it's it's for her particular demographic,
someone with dementia and someone at her age,

(19:07):
it is deadly. It can be deadly.
And it's you don't wanna give it to
someone. So he said, can, you know, have
your permission to take her off of it?
I said a 100% now. Let's do it
today. Right? So And I'm I'm so sorry.
I don't wanna forget that and also I
wanna move forward, but just real quickly
for our audience, you know,
patients should not be being put on medication

(19:30):
without talking to their legal decision maker, number
1.
Absolutely an issue. Penny, do you have any,
thoughts or statements from the nurse side on
the drug? Just only the Depakote is an
anti seizure medication. It's usually used for, you
know, seizure activity and and can be used,
but it's not even one that we use.
Like, if we're gonna do sedation for a
patient in hospice

(19:51):
who has terminal agitation,
we don't even use
that's not one we use, Depakote. So, I'm
a little surprised that they were
using that off label, you know, to sedate.
But, yeah, it would be sedating because it's
an anti seizure medication.
Right. And and I a 100% agree with
Hallie in that
medication should never

(20:11):
be started on a patient without a conversation
or stopped. And even in hospice, you know,
we don't just stop medications. We have a
conversation about it.
So so right out of the gate Yeah.
There's strike 1. Strike 1. Strike 1. And
let me I just just, anecdotally,
my my partner on, my,

(20:32):
No Country for Old People, Rick Montcastle, who's
a fed a a retired federal prosecutor,
if you saw Hulu's miniserie Dopesick, he's the
he's the main prosecutor played by Peter Sarsgaard
who
real was the one that prosecuted Purdue Pharma
for disseminating
OxyContin.
Well, right aft right after that case,

(20:52):
their next case, he and his partner's next
case was Abbott Labs.
And they took them and they prosecuted them
for off marketing depicode.
And it was a $1,500,000,000
It was one of the largest, you know,
fines ever put upon a a a pharmacy
a single pharmaceutical
case.
That's how bad it was, like, across the

(21:14):
country. And it's still I don't know. I
believe from other nurses I've talked to
across the country, they're still being used. It's
called sprinkles. They'll make it very cute names
where they just sprinkle it in people's food
that that can't take pills.
So, you know, which is,
again, why Rick has come on board with
this project because he said, you know, look

(21:36):
at the the kinds of work that he's
done. He also prosecuted nursing homes for 20
years for fraud, and he said there was
no significant change.
So this is why he's working on this
project with me to educate and to hopefully
advocate for change. So,
yeah. So back to
that situation with Depakote. So then that that

(21:56):
was really my mom never when she went
off and she never walked again, she was
never mobile again.
She didn't get, you know,
she probably maybe she could have with the
proper, you know, physical therapy, but
it wasn't offered and and it wasn't,
you know, I think that
That's only another story. Saying that it already
been a month. So of course, she's probably

(22:18):
got some muscle wasting and other
issues from that.
Yeah. The advancement of the disease as well.
Mhmm. Exactly. Exactly.
And, also, she, you know, then then she
remained incontinent.
Before, she had no problem, you know, finding
her way to the the restroom.
So, you know, once you're like that, once
you're so now you're very vulnerable and very

(22:39):
dependent.
And so when she ran out of money,
which you do when you have, you know,
a disease that lasts that long, a progressive
disease at 16 years, she finally, you know,
had,
you know, used up her nest egg. And
so
I had to find somewhere
that was you know, had skilled nursing
so that she could, you know,

(23:00):
be transferred
from
bed to chair because she wasn't bedridden,
and she was still very social.
So I found this place that's in Los
Angeles, a 5 star facility. I was doing
the movie at the time, and there was
a 3 year waiting list. And I was
like, I am getting my mom in there.
Right? And I
did everything I could. I said, I I'll

(23:20):
come on weekends and play piano. I'll say
I'll do it. You know?
I'll have Valerie Harper come and do, you
know, a q and a with the movie.
You know, I did everything. Anyway, we got
her in and I,
I was so happy because I thought, she's
gonna be at least taken care of well.
And not that I didn't see her regularly,
but I had a family and I also

(23:42):
have work. So I just thought, I can
sleep at night. I can sleep because she's
gonna be okay.
And,
I thought she was okay.
I thought she was okay
until
COVID came
and until we were locked out.
And and and I started, you know, we
didn't really get to start doing
Zoom calls, which is very difficult doing a

(24:04):
virtual call with someone with dementia,
with Alzheimer's.
It's, you know, they're very zen in the
moment and not having someone right in front
of you
trying to look on the screen. It's like,
you know, it just doesn't it's not conducive.
But it we did the best we could.
It was once a week. And then I
start began to notice that mom was never
outside of her room, and then shortly, she

(24:25):
was never outside of her bed.
So I kept asking them why you know,
to the CNA who became our, like, family
to us. It was the same one. I'd
say, Dahlia, why why is mom in bed
at 3 in the afternoon? I don't know,
Susie. I don't know. I'll try to find
out, but, you know, it's crazy here. It's
crazy.
You know? And now looking back, of course,
the whole

(24:46):
it was so common during that time to
just isolate people in their rooms and keep
them in their beds because because of the
understaffing,
because
trying to, you know, stave off any kind
of perpetuation of the disease. But what in
essence, what happened was
they
protected everybody to death.

(25:06):
So many people many people died of,
failure to thrive, really. And then and if
they didn't die from fail failure to thrive,
they died from bed sores and,
dehydration,
malnutrition,
starvation.
They weren't getting cared for.
People that, you know, didn't have cognitive decline

(25:27):
were calling their families and saying, I haven't
been bathed for a month.
You know? I can
I can verify that? My mother-in-law is in
a nursing home and was during COVID.
And we and when you said that about
them calling saying they hadn't been bathed, that
was us making a call. She says she
hasn't been bathed. What's going on? She was

(25:48):
confined to her room. We had to do
window visits. We could not visit with her.
We could talk with her on the phone.
However,
because of her dementia, she had a hard
time calling out or even receiving calls. So
we were at the mercy of the nurses
to be able to get to the room
and get the phone for her.
Yeah. So what you're saying is
my experience as well. You know, it was

(26:09):
a very, very challenging time for people in
nursing homes, and the staffing was terrible.
Right. Staff would get out with COVID. You
know, they would be understaffed because people had
COVID. And to this day,
we still get COVID updates. You know, like,
I I won't hear anything from the nursing
home for a month and then I'll get
a phone call and it's like, it's a
COVID update. 3 of our staff and 5

(26:31):
of our residents have COVID.
And, fortunately, they've looked at the restrictions. We
can still now visit. Mhmm. Right. But, but,
yeah, it was it was a very bad
time.
It was a very bad time, and and
it really what it did was pull the
curtain back on
what was already
a problem
that we weren't seeing, which was which is

(26:52):
chronic understaffing.
And, you know, and
gonna get into this, Susie. I wanna make
sure we point out too that this wasn't
just bad for residents, but as you're pointing
out, this has been an ongoing problem. So
staff that had been working there had been
Oh, god. Yeah. Saying things and
yeah. So the constant regulation changes with COVID

(27:13):
and restrictions,
caring for you know, protecting them to death,
restricting them to death, however you greatly you
put that.
Yeah. That just compounded the already
exacerbated problem. Yeah. Nursing homes have been a
problem for decades before COVID. And not nursing
homes, not necessarily because of the people on
the floor doing the care. Right. The over

(27:34):
the systemic issues that I know you're gonna
talk about. Lack of oversight. Yeah.
Mhmm. Lack of enforcement, lack of oversight.
The the regulations are there. CMS is doing
a horrific job at, oversight and enforcement
for whatever reason. There's many reasons that, you
know, we put forth in the documentary. 1
is, there's a very strong lobby,
and they're they lobby very hard

(27:56):
and for to keep status quo.
And, also, CMS is understaffed
as well. And so in order to provide
that kind of oversight that we need,
they they would have to have more more
staff themselves.
So So so I wanna say something about
that because Yeah.
You know, we'd have the regulations
in place,

(28:16):
but enforcement is the issue.
And I would say that what has happened
now is that the state surveyors
are responsible for doing the Medicare
surveys.
So when you take a state like California
where there's no limit to how many people
can open up
a hospice agency, and I don't know about

(28:37):
nursing homes,
but just because hospice is my jam,
you know, then you've got, like, in our
state, there's a limit
to how many hospices can open in a
county. They have to get a certificate of
need,
and the state surveyors in my state are
backed up.
They're backed up trying to get these surveys
done, which are required every 3 years.

(28:59):
In California, I can't even imagine how those
surveys are happening because there are so
many agencies.
Yeah. So many.
Too many. I don't know if you I
don't know if you saw the,
the I I took apart I dissected,
John Oliver's
report that he did a couple, on August
19th this year. Well, we'll get to that.

(29:20):
Wait. I wanna I wanna come back to
your story because we'll get lost in the
weeds of all the things. So your mom
sense it. Yeah. I was just gonna all
I was gonna do is say about California
because he does mention that that he goes
there was, like, what, 400
addresses in 1 for one building because that's
only their only requirement is to have a
a a actual address.
And he goes in Van Nuys, which is,

(29:41):
by the way, very close to where my
mom's place was. So, anyway, I just thought,
isn't that interesting? But that sort of, you
know, validates what you're saying, Penny.
So,
alright. So what was I saying? Back to
the COVID, and she was restricted. Now she's
incontinent. Oh, right. Now she's becoming bed bound?
Is that where we were? Oh, no. Well,
she yeah. Because Okay. What and she wasn't

(30:03):
bed bound. She wasn't bed bound. They just
had her in bed. Oh, gotcha. Okay. Right?
So so
when you know, let's push time. And finally,
when I got into see her, which was
over a year,
and I was able to go outside
and, you know,
they would wheel her out.
And
and I could tell she was unkempt. She

(30:25):
didn't smell clean.
She didn't have she had
someone's bridge in her mouth the la the
time I saw it.
That was flopping around. It wasn't my mom
didn't wear a full bridge. It was just
in her mouth.
Mhmm.
Yeah.
And I I remember wheeling her back into
the lobby and saying to the to the

(30:45):
charge nurse, my mom has someone else's bridge
in her mouth, and they said, impossible.
And and all of the personal stuff is
marked. I said, well,
this is not her bridge. She doesn't wear
it. She has a little, you know, she
has one little tiny one of, like, whatever
you call them. I can't think of the
name. But, anyway, she didn't have a full
bridge. It's like one of those things. Like
a partial. So she came A partial. Yeah.

(31:06):
I'm partial. So she came over. She looked
and she was horrified. She pulled it out
of my mother's mouth. And this is still
COVID, by the way, folks. Right?
And,
she said, oh, it must be one of
the the temp nurses. I'm so sorry. And,
you know, to me, it didn't didn't trigger
anything in me in in terms of that
temp nurse thing because I my head wasn't

(31:26):
there. It was just like, what's going on,
and why is my mom look so dirty?
And,
you know, and yet she was still communicating
with me. And I that actually have that
video because 30 of my mom because my
partner, Don, was there. And for some reason,
he happened to grab 12 minutes of video
of me have you know, having this conversation,

(31:46):
granted mostly one-sided, but mom was right there
and, like, laughing and then responding and, you
know, talking with me,
which I so I was doing my dog
and pony show. In any case, 36 hours
later, she ended up in the hospital
with a stage 4
bedsore that I was never told about,
sepsis,
10% kidney functioning, pneumonia,

(32:08):
massive dehydration, and a a severe UTI.
Wow. And that's beginning.
So on January 17th,
that was the beginning, and she died on
July
17th.
Okay. 6 months window. The beginning of our
6 month window you're talking about. Okay. Correct.
I'm tracking.
Yeah.

(32:30):
And,
you know, I had no idea. I didn't
know the battle that I was up for.
I had no idea. I just thought
all I knew was that the head nurse
from the hospital called me to say we
just, you know, your mother was just taken
here. I wanted you to know
that she was admitted
with a stage 4,
veg sore.

(32:51):
Okay.
Many things come to mind. First of all,
they wanted me to know that because they
didn't
want to You to sue them.
Right. They wanted to make sure that it
was because they are never events by CMS's,
you know, rules.
Mhmm. And they by the way, folks, they
should never happen. If they start,
and you can attest to this.

(33:11):
Right? Penny, you're a nurse, and I don't
know. Are you a nurse as well?
Social work, but I do Okay. Have a
lot of interactions with all of that. Yeah.
I mean, they
you know, there's stages. And if you if
you see it as one starting, then you
then you take action. It, you know, it
is the hallmark of neglect
to get that far. Not in hospice. I

(33:33):
wanna interject in hospice. Okay. Okay. It's different
because
when a person's
organs are failing which includes the skin, the
biggest organ in our body, people can get
Kennedy ulcers which are
worse than stage 4 is they're like melting
skin and there's, you know, like we can't
heal wounds for hospice patients.
Right.
We try to prevent them from getting worse.

(33:54):
Sometimes we just can't. But yes,
generally speaking outside of hospice,
there is
no reason for a wound to get to
stage 4 without
there should be intervention. There should be turning
the patient frequently. That's the first intervention that
we start with the stage 1.
Mhmm. And if that's done diligently,

(34:15):
then we never go to stage 2.
But, yeah, stage 4 is very serious and
I would say in a skilled nursing facility,
a hallmark sign of neglect. I would agree
with that. Yes. And and, you know, furthermore,
she wasn't bedridden. She was in a chair.
So, you know, it's not like she's lying
in bed, you know, and she is it
towards the end of her life. So that,

(34:36):
you know, that is telling you that they
kept her in that chair
Mhmm. With with her wet with her wet,
you know, depends. And and
and that was the issue. And so they
just got her in there, and then she
was probably left for 8 hours or who
knows, whatever. Mhmm. So
yeah. So
it that was a I I I don't
wanna get into all the details, but she

(34:57):
basically was intubated without me asking. They gave
her a feeding tube without me asking. She
didn't need any of that. She didn't need
the feeding tube. She ate perfectly well. That
was her life. So you're getting you're not
getting I should say I was gonna say
you're getting bad information. You're not getting any
information, not only from the care center, but
now from the hospital
as her legal decision maker.

(35:18):
Uh-huh.
And when when they were gonna when they
were gonna discharge her finally,
they extubated her too soon, and then they
in and then intubated her again. So that's
twice. It's very difficult on the throat as
you would you know. Right? Mhmm. Any of
us, if we'd had that happen, we we'd
have difficulty. It would feel sore to swallow.
And Mhmm.

(35:38):
That that's just, you know, just that is
human nature.
They didn't
they just decided they didn't wanna take care
of her anymore.
So when she got back to the nursing
home, I said, why does she still have
a a g tube? And why, you know,
why does she have a Foley catheter
and a g tube?
Right? And and they wouldn't allow me to

(35:59):
give her anything to drink liquid wise.
And they said, you know, no. She's gonna
aspirate. I said, well, you know,
I am I didn't know that they were
had her on MPO, which means nothing by
mouth.
So I was bringing in smoothies and all
kinds of stuff for her to soothe her
throat. She didn't she didn't choke it all.
You know? And and by the way, they

(36:20):
were like, she's gonna she can get, you
know,
aspiration pneumonia.
Well, she already had pneumonia. So you guys
are not doing a good job because she
already had pneumonia.
Right?
And, honestly, like, you have to weigh
you have to weigh your risks. You have
to do risk management, and you have to
decide, you know, what is somebody's quality of
life. You know, taking away all

(36:42):
oral gratification
is torture.
Mhmm. It's torture. Especially when they're still able
to have it. Like, absolutely, what you're speaking
to is provide education,
let them know that there may be a
risk. And also, if quality of life of
having that thing is worth the risk, then
absolutely have it. Yeah. For sure. Easily swallow.
There's no reason

(37:02):
for that. It was worse when they were
due yes. Go on. Was was she on
hospice at this point yet or no?
I'm glad you asked, Penny, because as we're
going down this last 6 months, I definitely
wanna make distinctions between what went wrong with
the nursing home, what wrong wrong with hospice.
So
continue, please. Well, so what happened was, you
know, she was sent

(37:22):
she had to go so she came back
to the nursing home
and was not and said and and immediately
had to go back into the hospital.
So
yeah. And because they either they discharged you
too soon or the or the nursing home
wasn't doing a good job. One, I don't
know because I was I I wasn't allowed

(37:42):
because she wasn't in hospice yet, so I
wasn't allowed to see her
still.
Because we're still in COVID lockdown. Right. Right.
We're we're at we're right. We're this is,
early 2022.
So it was when the other the set
that second
variant came out. Right.
So

(38:03):
when she was so when she they were
state she was stabilized
and then they were gonna release her again,
they the doctor called me and he said,
your mom's doing great. And I said, well,
I I'm very blunt. I was like, is
mom dying? He's and he said, no. He
said, don't be so dramatic. She's very strong.
We'll get her back to her base. He
said she's a she's a tiger. You know?

(38:24):
He said and, I said, okay. And he
said, but I wanna give her I wanna
give her a a nebulizer, which helps it's
just really very benign. It's you can get
them over the counter just to keep her
lungs, you know, giving her breath. Like, you
can explain a little bit better about it.
When
but he said I have we have a
problem. Her nursing home refuses to give her

(38:45):
that.
Because of COVID times, probably.
Right. Yeah. There's no reason to do that.
Well, so But they were the only ones.
You're right. They should have done it in
a room,
and the nurse could have worn an n
95.
Yeah. It's considered like,
I can't think of the word now, but
when you do, like, any nebulizer treatment, it
It's aerosolizing things. It's aerosolizing

(39:07):
the COVID. Yeah. But it wasn't but from
from now,
you know, I went back and and I've
I've interviewed, you know,
respiratory therapists who say, no. It's absolutely not.
And there's things that you can put over
the nebulizer,
and it will not, you know, penetrate the
outside.
Anyway, there's it in any case but you're
right. If even if it did, if they

(39:28):
kept her in her own room because she
was quarantined anyway. You have to be quarantined
at that time.
So,
he said, so I'm gonna have to send
her to,
to a, skilled nursing, you know, for a
second that where they will take her,
which was that was a disaster because they
were understaffed.
And So so so is there any place?

(39:49):
Okay. So but wait a second. What I
wanna say is he said we're gonna send
her somewhere else.
That's not
they can't really decide where she's gonna go.
That's for like, that decision should have been
made by you. What they should have said
was we wanna send her here. Do you
agree? Oh, yes. That did happen. He didn't
say to me. He said, I there here's
what he is there's no other place that

(40:10):
will won't take her. He said, I I
he goes, I want your mom to have
an advocate since you can't go in there
now. And he said, my my,
my medical partner, my doc yeah. I have
in his practice,
was on the board
of this very small, you know, rehabilitation
center.
And he said, so I I I would

(40:31):
recommend that because at least you'll have somebody
to advocate for your mom.
And so I said, okay.
I
did I finally
somehow, I I converse converse them to allow
me and my daughter to come in and
see my mom one time.
And,
she was she was looking a lot better.
She still had the the the tube even

(40:52):
though the doctor said it was gonna be
temporary
while she was intubated.
So I I I still don't know how
I never got the tube out from the
from the hospital because I had no
real good communication with them. And, honestly, to
get a callback from the the hospitalist
at any time was so difficult. Mhmm. You
know? I remember my daughter saying, mom, have

(41:13):
you talked to the doctor? And I go,
I've left, like, 5 messages,
and you won't get a callback for, like,
48 hours. Right?
So,
by the so, anyway, they they they called
me
from the rehabilitation
and said, we think your mom is laboring
to breathe a little bit, and we feel
like we don't have the the we can't,

(41:34):
you know, take care of her properly, so
we feel like we wanna send her back
to the hospital.
What is this is like a nightmare.
So
I asked the doctor who I've never met,
and I said he goes, well,
yeah, they're really not equipped to take care
of that level of care, and I'm not
quite sure what's going on. I said, well,
I just saw her yesterday, and she
seemed great. And then not great, but, you

(41:55):
know, she was she was very responsive and
laughing and
loving.
So, anyway, they ended up taking her.
When they said they were gonna take her
back to the main hospital, they didn't, which
was,
Tarzana Cedars. I can say that out loud
because they didn't do anything wrong. But they
ended up taking her to this very small
emergency hospital because they they for some reason,

(42:17):
that's what e m the the EMT did.
They sent her there.
I followed them, and
that was
that was, like,
4 days of hell there. They were they
basically told me that she's on life support.
I What? By the way, I I gave
her I gave I I finally and when
my mom was left that hospital, I said,

(42:38):
I want to put in her,
help me out here. I'm I'm losing my
weight this morning. The events directed because I
had her on full code.
And I because I wanted to be there.
I wanted to make decision. I want didn't
want anyone else to make a decision. I
would know when my mom's ready to die
because I've heard too many horror stories. So
I said, I don't want her to be
intubated.

(42:59):
And so you can put that in the
in, you know, in your in the, directive.
They intubated her again.
So
the admitting doctor who never I couldn't get
to see him. I was in the I
was in the waiting room. He said, well,
there's only one doctor here. He's not gonna
be able to see you tonight, so go
home and we'll call you.
They call me next day, and he said,

(43:20):
your mom's on on, life support. So do
you want us to take out the tube?
I said, I didn't want the tube in
to begin with.
So,
yeah, I guess so.
I didn't you know, so it was a
shock to us that she's dying. So I
got all my family, and we go there.
And my mom looks like a corpse.
Like, her mouth's wide open. She's not responsive.

(43:42):
I think she's dying. I'm not accustomed to
death.
And my
niece finally arrives, and she says, well,
well, nanny's not feeling any pain. She's on
a fentanyl drip.
I go,
what? Why is she on a fentanyl drip?
Like, what's going on? Like, why? And so
I asked the doctor. He goes, well, she's
he's never was there, by the way. Never.

(44:03):
He goes, well, she's allergic to morphine. I
go, no, she's not. She's not allergic to
morphine.
And and she wasn't, she's not in pain,
so I'm not quite sure what's going on.
And,
long story short, this will get into too
much
detail, but
I found out from the nurse that he
that she wasn't dying fast enough for him,
so he came and told told them to

(44:24):
up her Ventanal every half hour.
And and so and my mom was wide
like, woke up out of this stupor because
she wasn't ready to die.
And I mean, and and that's
evidenced by that she lived another 6 months.
Okay. You know? Because I I mean, if
my mom was ready to die, we were
all there.
We were actually sitting with her vigil, like

(44:46):
like saying to her, go, mommy, you've been
the great we we literally were like, here's
your wings. Go. You know?
Mhmm. Mhmm. She was not going.
You know. And so after after a week,
we were like, this is not doesn't feel
right. There's something wrong. And he said, well,
you know,
her organs have probably shut down and it's
too late to turn back.

(45:07):
And I said, but you didn't tell me
you were upping the fentanyl. And you said,
oh, didn't I?
Oh, like that. So,
yeah, so we we ended up
I said, okay. If her organs have shut
down, I get that. How is there a
test for that? Well, yeah, there is. Well,
then how about testing that instead of, you
know, playing, like, you know, 21 guesses?

(45:29):
And so he did. And the next the
first time I saw him was when he
came to the hospital to tell me, wow,
it's a miracle.
They're at a 100%,
and this has never happened in my whole
career
ever.
And he goes, so I'm gonna release your
mom. And at that point and he goes,
I'm gonna send her back to the nursing
home and I'm gonna recommend that she go

(45:51):
into hospice.
And I was like,
can she eat in hospice? He goes, she
can have a a freaking hamburger if she
wants. Right? And I'm like, sign me up.
I have no idea what hospice is at
this time. Right?
I vaguely have heard the word, but I'm
thinking I'm getting her out of this nightmare.
She's gonna go back to the her home,

(46:11):
which I have no idea has made that
big of a mistake yet. Right? And I'm
like,
I'm feeling good. I'm feeling like, okay.
Wow. This is crazy, but let's get her
out of here.
So she's going back to the first long
term care she was at?
Her home. No. No. No. This is the
5 star one.
5 star one. Okay. Okay.

(46:33):
I'm trying to keep track mentally. Yeah. I
know it's hard. So then I I met
by their hospice who, by the way, now
in you know, now I know they own
that hospice. Okay? It's very prestigious
place.
And,
all sounds great. Hospice nurse is a rock
star feminist. She comes every week and, you
know, so hospice is in the facility. Right?

(46:54):
Mom's gonna get all kinds of great things
and
so on and so forth.
And then
it all goes to hell. It's like
we're not taking out
the tube.
We're not taking out the Foley. We're not
When you say tube, we're talking about the
pig tube to feed her. Right? Tube. Mhmm.
Yeah. The feeding tube. Okay.
And my mom is her mouth is filling

(47:16):
up with this
hard, like, waxy gunk.
And she's like every time she saw me,
she was like
Mhmm. And I'm like, I'd look and I'd
pry it out of her mouth. I mean,
it's disgusting.
But I I was like, what's going on?
Like, why is this happening? Well, because she
has no liquid going past her mouth.
And so I'm going every day,

(47:38):
and I'm feed they said I was taking
the sponges that you sponge their mouths,
and I'm dipping it in juice. And my
mom is like this,
sucking it like a bird and then and,
like, going,
like that. And I'm telling them she's swallowing.
She wants to drink and eat. She's starving.
Like, she this is this is otherwise, there's

(47:59):
no quality of life. Like Mhmm. They're like,
well, you can take her home then. We
understand you're stressed
out. Well, and I said, well The hospice?
That can't Yeah. These these are I'm sorry.
I'm trying to get this straight again, though.
The hospice. They are saying this. And they're
both owned by the same parent company or
something? Okay. Yeah. And they're saying, we know
that you're feeling stressed out. And, you know,

(48:21):
if you wanna take her home, we understand.
It's like, wait.
You she still has the stage 4 wound.
And I'm and now I'm, and then the
the head nurse when she was came back,
she said, Susie,
you need to get
a wound specialist in here. Your mom needs
to be seen by a wound specialist. So
I was like, well, can you

(48:41):
ask for that? She goes, well, you have
to go through the hospice nurse and
so I was like I'm or the doctor
rather.
So I finally it takes me 3 days
to get ahold of the hospice doctor,
And she goes, listen. Your mom's gonna succumb
from this wound. So it's really it's it's
kind of a waste.
So and and as far as the tube,

(49:01):
let's just if you want,
I don't she's still gonna be NPO. We
can take it out, but she's still gonna
be NPO.
That's just it. She's gonna you know, we
don't want her to aspirate. I'm like, I
you're blowing my mind. Like, I don't know
what you're talking about. She this is the
then let's just shoot her because this is
not a quality of life to be lying
in bed
with nothing, like staring at a wall unless

(49:23):
I'm there. Mhmm.
So
I said, can we get a a a
speech therapist in, you know, to to do
to to see if she actually is swallowing,
you know, or not or if she is
aspirating.
Oh, yeah. We'll look into that.
And that took me 2 months to get
someone to come in and do, you know,

(49:45):
do some Alright. Well, now I think I'm
catching that because you guys talked about this
when Penny was on your podcast. Is that
right? Yeah. I wanna interject and say that
that it it's a regulation that a hospice
agency
provides
a speech therapist. So OTs, PTs, speech therapy
is something that is supposed to be provided.
If the agency doesn't hire them, then they're

(50:08):
supposed to get someone by contract.
And, yeah, it shouldn't have taken 2 months
to get a swallow eval on somebody
at all. That's
that was egregious error on their part.
Especially when someone you know, if if someone's
saying I don't wanna eat and they're pushing
it away, and you can attest to this,
Penny, because when people are ready to die,
they they don't wanna eat most of the

(50:29):
right? They're like, they Well, so they don't.
Most of the time, dementia patients, if you
put the food in front of them, they'll
usually eat it.
Mhmm. They have a reflex,
act action,
and so they will if you put the
the spoon to their mouth, oftentimes they'll open
their their mouth and they'll eat it. But
the other thing that that doctor did that

(50:50):
was egregious was to say that she's NPO
on hospice. That is just not even we
don't even use that language ever. It's it's
if they are at a risk for aspirating,
then like we talked about earlier, we are
going to educate
that that's a risk,
and you can make that decision. And I've
given
food, drinks, liquids, popsicles

(51:11):
to patients who were at risk,
after explaining the risk
and they wanted it and we did it
and, you know, that's what hospice is all
about. So to say
NPO
Mhmm. You know?
Yeah.
Well, you know why. And here's and here's
the right reason why. They are understaffed.
And because my mom would would be time

(51:32):
consuming
and let, you know They don't wanna That's
they don't wanna they don't so it's much
easier. Just keep her on the feeding tube
and, you know, keep the Foley catheter, which
I did my research on. By the way,
she ended up hemorrhaging from that Foley catheter.
They had to send her to the hospital,
give her blood transfusions.
She was bleeding from her bladder 2 months

(51:53):
in.
And and, when she we got her tubes,
that was that was hospitalization
number 3.
And the doctor there said,
we had to flush her bladder 3 times
because there was so much infection from that
from the Foley catheter.
So because it's an internal catheter, and if
it's not cleaned well and if it's not,

(52:15):
you know, changed properly,
it's it it it can, you know, create
a lot of, bacteria. And
so I, and I was like advocating for
the wick, which is something that is very
benign. It's outside the body and it wicks
away the urine. Because they they kept saying,
well, it's because of her wound. We're keeping
that in. I go, but you didn't keep
it in before. You didn't have it before,

(52:36):
and and she got the wound. So why
why now?
They don't wanna pay for the WIC. I
said, I'll pay for the WIC. But, you
know,
I my instinct told me, like, anything internal
for that long is not good if you
don't need it. You know? And I did
a lot of research on it. Anyway, that
the doctor, that not hospitalization,

(52:56):
he ordered that she
go back to the nursing home, not on
hospice,
because that's why she wasn't getting cared for.
And he said, and he said, let's just
put her on palliative care.
I still didn't know what the difference was.
All I knew was that no longer was
she in
on that floor, on the 1st floor, she's
now on the 2nd floor when I got

(53:18):
back, when she was, you know, returned.
A new social worker saying mom was gonna
get all kinds of therapies, which
FYI never happened.
And I was like, so is she off
NPO? She goes, that's the only thing. She's
not off NPO.
Why?
I do wanna double check on our time
because we're we're 45 minutes in. Are you

(53:39):
okay on time, Susie? I'm happy to go
longer. I just wanna make sure you're okay.
Oh, yeah. I'm I'm fine. You guys are
okay. Yeah. Yep. Yep. So I'm I said,
oh, come on. This is crazy. I said
this my mother is, like, literally dying of
thirst.
Like, hers you know, and then we if
when you watch the documentary, if you do,
you'll see her, you know, just

(53:59):
when I and I ended up, you know,
pretty much moving closer to the nursing home
through I went I went and lived with
moved into my ex brother in law's house
who lived a mile away so I could
be near her so I could at least
go once a day. Because after they finally
gave got the speech about the swallow a
vowel, they did a 2 finger test, which
is ridiculous. That's like saying, oh, yeah. You

(54:20):
have you have cancer.
You can't tell. It's like you need to
do, you know, an instrument test really to
find out if someone is swallowing.
They just did that. It was cursory. It
was performative.
And then they said, listen. We do see
that she can swallow with you, but we
don't trust the other
staff members to be as careful as you.

(54:42):
So we'll allow you to give your mom
with a sponge
Oh my gosh. Liquid, but no one else.
And so I had to go every day
because I couldn't think of my mom having
that gunk in her mouth.
And then also and by the way, that
gunk is more dangerous. It's full of full
of bacteria
when you don't do oral care, good oral

(55:03):
care.
So
I was there every day cleaning her mouth
and giving her liquid.
And
I just I just
couldn't fight anymore. There was nothing I could
do. I was I literally was stonewalled. And
and
so I just, that's that, that was that.
And then, you know,

(55:24):
it just, they never got the wound doctor.
They filed, you know, it was, it was,
I wanna say
after the
now let me get my timeline right. She
was hospitalized again.
And at that point,
that hospital said,
same hospital said, you have to get a
wound doctor in when we release her. They

(55:45):
finally had someone come in. When I wasn't
there,
this was 4 months after the first hospitalization,
they did a balloon VAC. They kept the
wound VAC on.
And then for, I wanna say, a week
or so. And then
one day I came and it was off.
It was on her, but turned off. And
I asked the head nurse,

(56:07):
I think there's something wrong with the machine.
It's off. She goes, oh, I don't know.
I don't know. Nobody knew, you know? Well,
can you call the wound doctor?
Like, 5 stars, folk. I mean, this is
like it I can't say the name because
I'm not gonna I don't wanna incriminate, but
because of the documentary. But,
it's shocking.
It's shocking. And so

(56:28):
there's too many details to tell. I do
go into it in the documentary, but but
it is all so
overwhelming
and all the things that went wrong that
I started to doubt myself going,
am am I crazy? Like because you start
thinking this this can't be happening. Like, there's
too many things happening.
And now

(56:48):
after doing my research and interviewing, you know,
over 70 people and then getting more and
more stories are sent to me every day
now,
All, you know, every day. This happened to
my mom. Same thing happened to my dad.
This happened to my husband. This happened to
my brother. So I'm not alone. It's not
just my story and my mom's story. It
is it is pervasive

(57:09):
and it's egregious
and it's
it's inhumane.
It's inhumane, what we're doing to people that
don't have voices.
And and it's not just older people. People
with who are younger have progressive diseases.
Mhmm. You know? People have Parkinson's.
People have are strokes. They have and they're

(57:29):
or they have autoimmune. I interviewed, you know,
3 people that are under 50.
You know? And it's there's a very big
population.
And also in the rehab centers, you know,
where
you have I interviewed a woman whose 30
year old son was basically neglected to death.
He he shouldn't have died.
And every day she was going there advocating

(57:50):
for the him. And it was
it's so tragic,
what's going on in our system.
So
I really appreciate you
recounting all of that. I know it's probably
maybe healing to also tell people about it
and also
traumatic. Traumatic. Relive it every single time.

(58:12):
Well, I've been doing the documentary for 2
years, and and I see my mom. I've
been editing, and I I see it, and
I it's difficult. I compartmentalized
it
to a point.
There's certain things I can't watch sometimes, and
I'll tell my my producing partner
I can't look like, fast forward that. So
you know?

(58:32):
But we just had a watch party yesterday
for the,
the preview with Sizzle, which is the only
is 25 minutes of the project that we've
been using for advocacy and also to continue
raising money. And
I forget
how
gripping it is. Yes. It's my mom, and
it and it triggers all those feelings of
my mommy.

(58:53):
But I also realize how
what a
big, big boulder we're pushing up this hill.
Mhmm. And so it is it is very
it's harrowing, but it's also you know, I
feel like
at least we're we're we're
pushing it. At least we're pushing the rock

(59:13):
up the hill. At least we're getting, you
know, some momentum.
And and maybe it won't happen in my
lifetime. I hope it does. I hope change
happens, but at least we'll make awareness
because it it shit doesn't have to be
this way.
No.
No. Your mom ever go back on hospice,

(59:33):
before she died, and did she have a
peaceful end?
She went back on a she went on
the final,
hospitalization.
That you know, I knew that she that
was it. I was she was gonna be
done, and I was done.
I was done with it. Not for her,
but I was done with her going through
this hell.
So I wanted her to go on hospice,

(59:55):
and the hospice
who she had who observed hospice before, I
the,
what's it called in the hospital? The people
that that that organize all that. There's a
Liaison?
Hospice liaison?
No. A discharge plan?
No. There's a, a case manager.
Case manager. Okay. Case manager. Yeah. And so

(01:00:15):
she said well, she called up the hospice,
and they said,
well, what is she gonna expect from us
now?
Because,
you know, they didn't wanna deal with me.
And
I said to the hospital I said to
the case manager, can she just do hospice
in the hospital?
And they said,

(01:00:35):
yeah. She can. They could. They said they
could. So they brought in yeah.
So they said and I said, can she
not I don't want her to move anywhere.
Like, can I just make it peaceful? And
and that's what we did. We kept her
in this hospital room that I made. It's
very serene and beautiful and
and

(01:00:55):
which smelled good and had, you know,
just
flowers and music going all the time. And
and, you know, and, yes, it was peaceful.
And I told her she taught me how
to live and she taught me how to
die now.
And that was her legacy to me. And
so, you know,
I I'm grateful for that.
I'm grateful for that.

(01:01:18):
I'm glad that that got to be
your final memory of this whole saga because
wow. That's
what I'm doing. A lot.
Yeah. Yeah.
It doesn't have to be that way. That's
a sad thing. You know? And and
when you think about the people in COVID
that died alone

(01:01:39):
Mhmm.
That didn't have anybody to say to hold
their hand and say, you know,
you're the best. And you're you're I told
my mom what a rock star she was
and how how brave and strong and, you
know, and,
she's gonna leave on her terms, not on
their terms. You know? And that's fair. That's
fair.

(01:01:59):
That's dignity. You're owed that, you know, when
you're ready to you're ready. And I knew
my mom. If you knew her when she
was younger, she would she'd be like,
I'll I'm gonna go when I go.
I'm going now. Bye. You know, that would
be my mom.
Have a nice life, you all. Bye bye.
You know? That would be my mom, but
it would be on her terms. And and

(01:02:20):
I just wanted to respect that.
You know?
And that was important. That's important for anybody
to to have that and to have dignity
and not to be tortured.
Mhmm. And and that's torture
to not
get any liquid in your mouth. That's torture,
you know, to lock people in rooms. That's
what we do to prisoners.
We lock them in solitary confinement.

(01:02:42):
It
really sounds like your story is like the
worst
amalgamation
of every terrible thing that could have possibly
happened.
And I know you're not the only one
that that something like this has happened to.
I also don't want people to be freaked
out that they have no options.
So there's this balance in me as I'm

(01:03:02):
thinking about how to have these conversations
and continue advocacy. Exactly what you're doing
is, yes, there's a problem. And also,
as you have talked about being a sandwich
generation,
people cannot have their loved ones at home
or don't have the physical ability or skill
or time or whatever reason that they can't
have their loved one at home

(01:03:23):
have to rely on
homes like this. And so Mhmm. Definitely one
of the things we wanna talk about is
advocacy,
what someone can do,
besides just being
fiercely advocate
for your own loved one. Right.
It's hard to be an advocate in a
in a facility with your family member. It
just is, you know, you become the enemy.

(01:03:46):
They don't wanna hear from you because and
it's and and and I get it because
they're all overworked and understaffed.
And so you become the thorn in their
side, and then and then you become a
a a problem that they can't solve.
They can't even if they want to. And
that's why there's so much moral injury
with our with our providers because they can't
do the job they wanna do. Mhmm. And

(01:04:07):
and that's unfair,
and they're suffering. And there's a lot of
suicide
rate in doctors and in nurses and in
frontline providers
is sky high right now. Mhmm. I just
read that about doctors.
Yeah. Yeah. And people leaving the the industry
that they love, like vocational nurses, vocational CNAs

(01:04:28):
who actually love their jobs
have left
because We had a pretty mass exodus after
COVID in general in health care. Because they
weren't taken care of. Shortages.
Because they weren't taken care of. They're not
given benefits. They're not paid well. And they're
not they're not acknowledged.
They're not given the respect that they deserve

(01:04:48):
because they are
they are our they are our fa our
loved ones'
family
there.
They are. They are the ones that, you
know and and you must have consistency.
So if you're having, like, new people in
and out that don't know, you know, how
how can you care for someone that you
don't really know? Every every it's not one

(01:05:10):
size fits all.
You know? And,
it's so important for quality of life. And
if you're gonna call it a home, let's
make it more like a home
Yes. Than an institution.
Yeah.
It's a it's a systemic crisis
and, like, what is what is the answer?
That's the issue. You know? Like, I do

(01:05:30):
know with Medicare,
they just came out with their final rule
for hospice. Now I don't keep up on
their final rules for other
health care service lines, but for hospice, they've
just come out with their final rule, and
they are going to start looking at
the
lowest performing
10%
of hospice agencies
and put them on a special focus program.

(01:05:53):
And they're gonna be looking at quality scores,
safety,
complaints.
What was the other one I said, Hallie?
There's 4 4 different things that they're looking
at. Look it up again. Yeah. Quality scores,
complaints,
safety issues, and something else that they're looking
at. And they're when they
have these 10%

(01:06:13):
bottom performers,
they're gonna go in a special focus program.
They have to be surveyed every 6 months.
They can be,
penalized
monetarily.
They can have their,
Medicare license revoked.
They may be forced to hire a manager
at their own cost,

(01:06:34):
an outside manager to come in.
So I do know that, at least with
hospice, there are things that are being put
into place
to try to correct these issues.
Right.
But I fear
that
the same thing isn't gonna happen for nursing
homes
and and it's been set so you know

(01:06:54):
I became a hospice nurse because I wanted
to do something
that would help people and my alternative
plan to that was to work in a
nursing home because at the time that I
became a nurse which was 20 years ago,
21 years ago,
there was a lot of abuse happening in
nursing homes.
And so I wanted to make a difference
in whatever field I went into, and I

(01:07:16):
knew that nursing homes was a place where
they needed
help. Mhmm.
Glad I didn't do it because I would
be one of these people that would be
completely burned out from
having to work in that
horrible
environment. But Mhmm. You know, everything that you're
saying about the the nursing home for your
mom rings true for me because not only

(01:07:36):
is, like I said, my mother-in-law in a
nursing home, but I've had patients in nursing
homes too.
And hospice doesn't allow for us to go
in there and spend a lot of time
doing the things that
the nursing home is supposed to be doing.
Mhmm. Right. The benefit doesn't allow for that.
And
so I've I've had that issue too. You

(01:07:56):
know? A patient who's on hospice, who's in
pain, who needs pain medication,
and you have to get them on scheduled
pain meds because otherwise, they're not gonna get
them. Mhmm. Yes. If they're if they're ordered
as needed, forget about it. It's not gonna
happen. You're not gonna get it. 100%.
And that one thing, not to be Debbie
Downer, but the one thing I worry about
when it's CMS making these regulations

(01:08:17):
is the enforcement of them. And that's the
problem because, you know,
hospices and I don't know
about when with, like, the kind of hospice
nurse that you are because I know you
do it mostly in homes, or do you
go into the hospitals now? Right now, I
don't do I'm in quality now, but I
used to I I worked in homes as
a hospice case manager.
Right. And then I also worked in hospice

(01:08:39):
care centers, which is where people go for
acute symptom management. And how they how they
still goes into homes as a hospice social
worker.
Gotcha. And I do believe I didn't just
go into home. So a home for hospice
is
is a house. It's a nursing facility. It's
an assisted living. It's a Vandel by the
river. It's wherever the person lives. So I
did both. I went into homes. I went

(01:09:00):
into nursing homes. Okay. Because I I I
do know that, you know, I mean, Care
Compare, like in c CMS where you can
go and look up, you know, the quality
ratings for different Mhmm. Organizations.
They are self reported.
So you and the ones that aren't reported
There are other other things that are reported

(01:09:21):
on us that we
yeah. Yeah. They're not self reported.
Yeah. So the cap survey
Yeah. Okay.
The consumer assessment for health providers
survey,
is what family members fill out after the
person has died. Those are the quality scores.
The scores for visits in the last days

(01:09:41):
of life come from,
claims.
The hospice care index comes from claims, the
hospice item set comes from claims. So none
of that is self reported. It's everything that
Medicare
gathers from what we have to
report. So we're required,
if you don't have a quality reporting program
in your hospice, you get a reduction in
payment. So every every hospice is gonna have

(01:10:03):
a quality reporting program. So I never filled
out a a survey
after. They never So the hospice agency
is not required
to send a survey to every patient. It
depend the the
hospice they are supposed to have a certain
percentage of
surveys
that are returned.
And if they hit the return rate

(01:10:25):
then that's okay. So if it's a big
hospice agency and they have lots of patients,
they're gonna send out these surveys
and then if they get as many back
as they need
then they don't have to send more out.
So a hospice can choose to send out
to every patient or they can say we're
gonna send out as many as we need
to until we get that survey return rate

(01:10:46):
where it is supposed to be according to
Medicare.
I gotcha. Okay.
I will say this though, Susie, about Care
Compare.
It is a look back
and it's
pretty far behind.
Mhmm. So we were looking at Halle's agency
today,
which is a 4 star agency, I wanna
say, and that's very good. There's not a
lot of 5 stars. Yeah. And their quality

(01:11:07):
scores are very excellent. They're high, very high.
It's a look back, but it's it's kind
of old news because, like, their census now
is higher than it was when it was
reported.
Much higher. Yeah.
Right. And it can go the other way.
It can go the other way. Absolutely. And
I just I wanna just say, like, I
don't wanna leave people, like you said, Haley,
like, you know, in in complete,

(01:11:29):
you know, just nihilistic and and despair.
But, because
look.
It's bad. But we but we, a, you
can you have to advocate. You cannot just
say you can't don't be like me and
think everything's okay even if it's a 5
star facility.
Yeah. Hopefully, it is okay, but be be
there. Go there. Yes. See your family member.

(01:11:50):
Don't go at the same time every time.
Go at night. Go in the morning. Go
in the afternoon.
See if how they're being cared for. Yeah.
You will you'll know. You'll know how it's
how they're doing. Ask them. Check-in with them
even if they have dementia. I always said
to my mom, how are you, mommy? Are
you do you feel okay? I'm great.

(01:12:11):
She'd say, I'm great.
I'm alive.
And so, you know, I say check-in.
And then for the for the real change,
you know, we're I'm trying to to create
and mobilize a movement, a grassroots movement
because of the lobby that's really
so forceful.
They have a lot of money.

(01:12:31):
Mhmm. They pay for a lot of candidates.
Our politicians are
in they're, you know, taking bribes from them,
and they also have paid for seats in
our legislature.
And so when you go to pass a
bill that might be advantageous,
it will get to the legislation, and then

(01:12:53):
somehow
it's killed.
And that's because the lobby's there. And, you
know, not the thing about you know, I
I'm in a group called it's a international
group called Open the Doors. It's mostly for
dementia care.
It's based in Australia.
They have very similar issues that we have,
but they don't have a lobby.
It's against the law. But in America, for

(01:13:15):
some reason, we have a lobby. Everyone knows
it's crooked. And, you know, in our, all
our lobbies are crooked. You know, they're always
lobbying for the 1% and
Mhmm. And that's what's going on. So in
order to fight this, and I say this
to your, to your audiences,
you know,
we are powerful as constituents,
as a community, as the public.

(01:13:37):
It's your money.
Medicare and Medicaid is your money. You pay
into that. It shouldn't be
abstracted
in such high
percentage that it is
to people
that are that aren't in the field of
care.
It is a profit over people
industry now, and I wanna flop that. I

(01:13:58):
wanna flop it. I want it to be
people over profit.
Profit can be made, but not at the
expense
of warehousing human beings. So,
and I think it really is gonna come
down to us.
We've done it with Mothers Against Drunk Drivers.
We've done it, you know, with the Me
Too movement. We've done it with, you know,
you name it. You know, the LGBTQ

(01:14:19):
have been very successful
in in changing
our our Laws.
Laws, our our our
our cultural
mentality.
And we need to do that.
We have to do it.
I know we do not have time to
get into all the nitty gritty details of
everything I would love to talk about, but

(01:14:40):
I do wanna talk about your advocacy and
specifically what kinds of reform,
not not like you're a political candidate and
you have to tell me all this, you
know, why you because we know it's legislation.
But what are some of the things that
you're advocating for in regards to that if
you can share that with people? Sure. I
mean I mean, the worst the worst part
of this business model is there's no transparency

(01:15:02):
into the ownership. Right? So, therefore, you can't
there's no culpability. So we are we don't
know how to
find the bad players.
So that's why, you know, it because they're
shielded through all these it's like money laundering.
They have these related parties. They'll own the
the real estate. They own the management company.
They own the vendors,

(01:15:24):
and then they jack up the prices, and
then it makes so CMS thinks they're in
the red and they're they're and so when
there is a problem, if someone does take
someone to court, it's it's
generally, they're you know, you're fighting you're actually,
you know, taking the facility or the administrators
who have nothing to do with this business
model. They're just going they're just going along

(01:15:44):
with what their bosses are saying.
And that and those people are so far
removed
from what's going on here. Right? So you've
got these money you know, the people up
here, and then you've got the actual
nursing homes down here. Right. They're trying to
do the best they can
under this kind of of rule, under this
model.

(01:16:05):
So And I appreciate that macro level looking
at because Yeah. Like you're saying, the people
down at the work level
are not the ones actually making the decisions.
They're trying to carry out and do the
best they can with what they got.
And then they're the ones that are getting
the brunt of
the the rightful frustration.
Right. Right. Yeah. And no wonder no wonder

(01:16:26):
there's everybody's frustrated on both sides. Everybody.
And so yeah. And so if if we
don't have transparency,
we can't stop
what this this kind of, you know,
it's really
it's really gouging
this industry and in in a legal way.
So they're able to gouge it without

(01:16:49):
any penalty.
Because the way that they that our corporate
structures are set up, they are they're just
shielded. So this is what the people that
are much smarter than me, who have given
much thought to this, who have talked to,
you know, go and advocate for this kind
of change, because all the other changes
that that legis those all those regulations are

(01:17:12):
there.
There's really good regulations in place,
you know, and they're just not being adhered
to. And there's such a speak to the
advocating
on a state level or local level
where you're advocating to your local legislation to
make sure it's funded for
regulation
support and,
like, certificate of needs, like Penny mentioned. Like,

(01:17:34):
that those are local things that we can
make effect on. And California did just put
a moratorium
on, hospice agencies too. You can't they can't
open any new ones. So the so that's
a step in the right direction. They also
just passed a law that if there is
abuse of a patient in a nursing home,
that law enforcement has to be called.

(01:17:55):
So whoever is aware of so, like, our
so my agency works in in California also.
And so our hospice team, if they
suspect abuse of a patient in a nursing
home, they have to call law enforcement.
That's a new law. Adult protection services. Law
enforcement. They have to call law enforcement. So
that's a new law for you. That's good.

(01:18:17):
But then I say, you know, knowing what
I know, I say, okay. How much education
are you giving these people that are coming
in? They're not gonna understand what's actually going
on. So Mhmm. In some ways, I say
that's performative right now. And that's why we
have to say to our governor here who's
who's, you know, priming himself for the White
House. We know that.
Like,

(01:18:38):
stop taking money from people like Shlomo and
stuff like that. We know what you're doing.
We want, you know, be a good be
a good governor and and hopefully a good
president because you we know you're headed there.
So we we'll put him back and shame
him and say stop taking lobby monies. Get
lobbies out of health care. They don't belong
there. Yeah. Yeah. And pharma. Thank you. Yeah.

(01:19:01):
And pharma. Yeah. Well yeah. And so, you
know,
let's do that. Stop it and actually enforce
the good regulations that many good people have
spent years creating.
And let's let's, you know, institute the get
those going and get those working well and
get those people that are greedy out of
there. And people can make a a money.

(01:19:22):
They are it's it's capital we're a capitalistic
country. Make money. You're entitled, but not at
the risk of of torturing people. Well, it
doesn't need to be at the margins to
be made. Right. They can have a profit
without being ridiculous margins of profit.
They don't need a private jet. Mhmm. Right.
Exactly.
They don't need an $11,000,000

(01:19:43):
home. They'll they'll be fine. Like, you know,
so that's that's what I'm advocating for. I'm
advocating for the macro, Hallie. I'm advocating for
because we can't really make legislation
stick
unless we get
you know, we let the politicians know that
we're what we know. And that's our

(01:20:03):
currency
and is our constituency.
Tell us about your documentary that I guess
I'm a little confused if it's out already
or you're still working on getting it out.
Tell us about this. Yeah. Yeah. Yeah. No.
We're we're just finishing it. It's it's we're
just, getting distribution. So we just signed with
distribution. And
in the meantime, we're still raising money, and

(01:20:23):
we're raising money for the final there's always
little cost at the end because we've done
this all grassroots. We haven't taken any corporate
money. It's all been, you know, just Lady
by example. People out. Yeah.
And and,
so we're doing that and also raising money
to for the for to mobilize a a
movement.
And so, ideally, like, best case scenario would

(01:20:46):
be the whole project, which will be a
docuseries.
So it'll be a 3 part docuseries.
We'll be out before the end of the
year. And this is not the country's worst
parties. Old people. Old people. Mhmm.
And where will people watch it, or do
you know yet? Like, is it Netflix yet,
but we're looking Okay. I'm hoping for a
prem you know, a premier a premium

(01:21:06):
streamer like,
like Hulu, like like Netflix Netflix. Amazon.
Mhmm. Hopefully, Netflix.
And,
and that's, you know, that's what we're fighting
for. And
I feel good. I feel like we you
know, it's been a long 2 years because,
obviously,
I'm rocking the boat. We're rocking the boat.
And
it's painful to tell people that

(01:21:28):
it's scary. Like, when I when I first
finally showed my my own manager, my, you
know, my entertainment manager,
I was keeping this very quiet because I
didn't know what what I was gonna do
with it, how it was gonna roll out.
And I finally showed him, you know, the
the, rough cut.
He called me, like, at midnight. He goes,
I'm blown away. He said, I I don't

(01:21:49):
have kids. I'm not married. He's a bachelor.
I
he's I called my sister in Chicago and
said, I'm screwed. Like, what's gonna happen? He
goes, that's so Chicago?
He's like, I this is this is horrible.
He was like I said, so get busy
and find me some, distribution.
Go.

(01:22:10):
But, I mean, you know, that's what I'm
hoping that this does is that it really
resonates with people and, you know, my tagline
is like, this may be my mom's story,
but it's really all of ours.
Mhmm.
Yeah. That point, I think micro level when
we're talking about advocacy,
of course, if your loved ones are able
to, your legal decision makers get in, advocate
like you're saying, see them at different times,

(01:22:32):
get word-of-mouth
from other people that have been at that
facility,
and then you can always reach out to
the ombudsman. You could just Google that in
your area to get in contact with who
you need. If you feel like there's an
issue, absolutely call
Adult Protective Services. There's facility applications for that
as well, and, apparently, in California, you call
law enforcement.

(01:22:52):
So,
yeah, I think the the one thing I
was thinking about as we're talking, and it
obviously doesn't apply to your situation,
but I know I have had folks that
haven't been involved with their loved one for
quite a while, and then they're coming at
the very end of life.
And then that
loved one, advocate,

(01:23:12):
legal decision maker
is really struggling with when we're trying to
educate them on things that
not again, not at all your situation. That's
why I was hearing you say it. I'm
like, this is a horror story.
Mhmm. But I I think there's that too
is that that there are times when people
have not been involved,
and then there's the grief and then there's
the struggle of the education piece of end

(01:23:34):
of life too. So I think holding both
of those are, important places to to think
about and advocate. Agreed. I agree with you.
Education is so key. Like, you know, Penny,
what you're doing
and, Hallie, what you're doing is so important
because I didn't know. And then all of
us don't wanna think about dying. And, you
know, my mom and I, we told each
other we're not going. That's for other people.

(01:23:54):
Right? I hear that.
Right. Right. So it is a lot of
la la la. We do that
for as long as we can, but then,
you know, you have to get
you have to get real and you have
to go, okay, I need it's it's actually
like, don't be a scaredy cat because I
was a scaredy cat. So don't be a
scaredy cat. And if you love somebody,

(01:24:15):
learn about it because it's important so that
you can be the best advocate So that
Mhmm. When you are in crisis yourself because
you're dealing with the loss of somebody or
the potential loss of somebody that you can
make good decisions. You can't make good decisions
when you're in crisis. It's too hard.
So well said. Mhmm. So well said. Yes.

(01:24:35):
Yeah. Emotional stress can help you to not
see the forest through the trees. So yeah.
I mean, it's it's true.
Yeah. Is there any information?
Yes. Is there any information we didn't get
to?
No. No. I mean, we you know, listen.
Obviously, we could talk all day on this
because there's so many anecdotes and things.
But no. You know, I think we got

(01:24:56):
the point across.
And I think, you know, if you wanna
know more about our documentary, No Country For
Old People, you can go to no country
for old people.com.
You can there's a if you wanna be
part of the movement, which I would we
welcome everybody. If you wanna do a national
movement, it's so important. Just use our voices.
That's they're very strong,

(01:25:18):
and they're undeniable.
You know, you can't you can't shut up
millions of people that quickly. So Mhmm. Let's
let's do that. You can, you know, just
sign up. There's a there's a form. You
can just click on it and just sign
up, and then someone will be in touch
with you sooner or later to say how
you know, what can you do? Can you
walk? Can you talk? Can you hold a

(01:25:39):
sign? What can you do? You know? And
we'll we're gonna do this. We're gonna do
this. And if you have need a tax
deduction and you wanna, you know, donate, there's
also a link there. It goes through the
National Consumer Voice For Quality Long Term Care.
They're our fiscal sponsor.
5% goes to them. It's a 100% tax
deductible. We welcome it. We need it. We
need it for the movement,

(01:26:00):
and we appreciate
all your support. And that's it. You know?
Enjoy your and just
love love on the people that you have
right now because you won't regret it.
And, Susie, you're on, social media also. Right?
Yeah. Do you wanna give your social media
handles?
Sure. I'll for me personally, it's Susie Singer

(01:26:21):
Carter on everywhere. So and then there's on,
for
No Cuchy Feral People is not on Insta.
It's on Facebook. But
everything else goes to me. There's too many,
like, like handles to have. I make it
separate. Because I have my podcast. I love
Conquers Alls as well, which I'm so proud
of.

(01:26:41):
Right? We never even talked about your podcast.
This is fun.
I know. And I'm I'm in I'm almost
I'm 2 episodes away from our 100th episode,
which I'm so proud of. Amazing.
I'm so proud of that. So And it's
called love conquers all ALZ for people that
wanna find that. Yeah. We'll have that in
the show notes as well. That, and we'll
link the no country for old people,

(01:27:03):
website in the show notes as well. Wonderful.
Thank you so much, you guys. Thank you.
Yeah. I don't want to
be remiss. We do have a question that
we're adding to season 2, and I don't
want you to listen to the other ones
and say, hey. They didn't ask me this
question. So it's a little it's a little
out of context now that we're out of
this conversation. But
our coffin question is,

(01:27:24):
what do you want to have happen with
your body when you die?
Wow. That's heavy.
Well, I tell my daughters, make sure that
my lips are outlined because that's very you
know, I want I want them
to look fierce. Honestly, that's important. That's good
for them to know. Yeah. My daughters know

(01:27:46):
that. I go, what do I want? We
know. Lip liner.
You know what? Little things like that are
important.
I I want them to laugh. I want
them I want them to feel okay.
And,
Laura, I I don't I actually haven't even

(01:28:06):
thought about it. I don't I don't know.
I don't I don't big on,
I don't know. Let me think. I don't
really wanna go underground. I don't know why
it feels claustrophobic.
I like to be above
somewhere.
Well,
you don't have to have any answer yet.
I don't have to think about it. See,
I'm not yeah. I mean, I will think

(01:28:28):
about it. I do yeah. I need to
think about it.
Okay. Because it's never too soon. We don't
always get the benefit of time, so something
will make about it. You're so don't let
don't follow me on this at all.
Get your coffin answer.
And look into the different choices because we
now have so many. There's burial. There's green

(01:28:49):
burial. There's cremation. There's aquamation. There's body composting.
So What's yours? What's yours?
Mine is body composting. I wanna be body
composted. I probably will as well.
Mhmm. Okay. Yeah. It's it's fairly new. Mhmm.
But, yeah, turn me into compost and throw
me under a tree so I can fertilize
the ground. I I wanna do something that's

(01:29:11):
environmentally
friendly.
Awesome. That's awesome.
Yeah. I think don't you do that naturally,
though, anyway?
Well, anyway, well, that's
Well, if you do green barrel yeah. Yeah.
Yeah. If you do green barrel, you could.
That's true.
Body composting does happens, I think, quicker than
a green barrel, and also you have some

(01:29:31):
control over where you put the remains. So
I can be left up in the I
see. I see. Yeah. Do I see oh,
so it's kind of like being cremated, but
also doing it
like yeah. Got it. Yeah. That's a good
idea.
I like it. Yeah.
Well, good. I'll I'll wait for a while,
though. Let's wait for that for a while.
I'll put a pin in the bag. Long.
For sure.

(01:29:53):
Thank you so much. To do. Thank you.
We appreciate you. You have a wonderful day.
Alright. You too. Thank you so much. Bye
bye.
Well, I think it should be just a
running theme every time I start an outro
that we could just keep talking to our
guests for hours,
and no exception for Susie. What,
Harold's story her story. Yeah. There's a lot

(01:30:15):
more too, and I heard some of it
when I was on her her podcast, and
it was
horrifying. It was horrifying.
I mean, I think we might I don't
know if we talked about this offline or
at the intro, but
any bad
story, any bad
survey, any bad experience that someone has with
any hospice
reflects

(01:30:35):
poorly on all of us. So us that
are in the field doing good work, this
is just
excruciating to hear and don't wanna discount. I'm
sure it happened. It's fucking terrible.
Mhmm. Absolutely. And and same for
nursing homes and Yeah. You know, anywhere. They
do
something bad. You know? Like, I've had experiences

(01:30:56):
with,
hospital ERs that were horrible, and I will
never go back there because of my experience.
You know? Like we talked about, perception is
reality. And if you get and in her
case, you know, time after time after time,
things were being done to her mother that
she
did not know about. Right. Which is just

(01:31:16):
insane.
I know. It's crazy. It's crazy.
So,
yeah. So may I mean, so many thoughts
are still running through my head. I wish
we could have gotten to all of them.
I'm sure we will touch on things here
and there throughout as we're doing education,
just to make sure people are aware of
what, like, the regulations are and
how hospices differ and what's different between nursing

(01:31:39):
homes and all of that. So if people
have questions about anything that came up, we
don't say it a lot, but you can
always find us. It's in the show notes,
deathhappensinsiders@gmail.com.
People can always write in. If they have
questions specifically,
we can do a whole episode on questions
if you want. Yeah. Yeah. Or share your
experiences, good or bad.
Wanted to make sure that people know, what

(01:32:00):
to do if their person is having Absolutely.
Something
going on that's bad in a nursing home
or in,
especially hospice because that's our area of expertise
that you can call the ombudsman as Hallie
said.
Mhmm. State Department of Health. You can call

(01:32:21):
Adult Protective Services.
Mhmm. If you are looking for a hospice
agency or a skilled nursing facility or a
home health agency, a hospital, anything, actually, you
can look at the Medicare compare website. You
just need to Google Medicare compare
Mhmm. And you can put in your zip
code
and the area of,

(01:32:41):
health care that you're looking at. So if
you're wanting to find a hospice agency, you
put in your ZIP code, it will bring
up all of the hospice agencies that serve
your area along with their quality scores.
Mhmm. It's a good way to choose an
agency. Also know that you have the right
to
pick your own agency.
You can self refer.

(01:33:02):
You can call and interview them,
and choose which one you want. And you
have the right to transfer hospices.
If there I mean, the the limitation is
if there's not a if you're in a
very rural area, there might not be a
lot of options.
But if there are options or especially in
states that don't have CONs,
you can choose and you have the right

(01:33:23):
to transfer or revoke hospice at any time.
Right. And as a reminder, a CON is
a certificate of need,
which means that the,
governing body of your state for health care
has to issue a certificate to allow you
to open a hospice agency
in Washington state where we
are. The certificate of need is required

(01:33:46):
and what it does is it limits the
amount of hospice agencies that can open up
so they have better oversight,
into what's happening.
So in California, they do not have a
certificate of need, and I don't know which
states do and which states don't. Something you'd
have to find out through your, probably department
of health, I'm guessing Mhmm. Or your state
laws.

(01:34:07):
If you are living in a state like
California that does not require a certificate of
need,
I recommend, that you look for a joint
commission accredited
hospice agency because there is going to be
more oversight
from that accrediting body. So I I highly
recommend that you,
look into that. They do have stricter

(01:34:27):
regulations that they have to abide by, and
they're looked at more closely in
Yeah. Never and never underestimate
the power of word-of-mouth,
although some people may have had a bad
experience for various reasons. It's not the end
all be all, but it is a factor.
If you know people, if they've had good
experiences, that's just one more way that you

(01:34:48):
can
investigate and see if that is the that
agency is the right fit for your person
or yourself.
Yeah. Absolutely.
Well, that was a heavy one. We're gonna
shake it off, but it was needed. It
was necessary. It's good information.
Yes.
Heavy.
And until next time, remember to live. Because
someday, we will all be dead.

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