December 2, 2024 • 52 mins
Betsy Wurzel started her career as a Talk Show Host at Passionate World Talk Radio and the name of her show was Chatting with Betsy. Betsy is also is an unwavering advocate for Alzheimer's caregivers who shares her own heartfelt experiences caring for her husband, Matt Sloan. Her stories are candid and passionate and truly exemplify the transformative power of love, humor, and community in the difficult landscape of dementia care.
Shifting gears, we confront the murky waters of hospice care—a field riddled with misconceptions and often misunderstood protocols. Misunderstandings about hospice care and the rights of patients can lead to inadequate pain management, affecting the dignity and well-being of those with dementia. Through our unvarnished discussion, we unearth Betsy's personal story of advocacy, emphasizing the critical role caregivers play in ensuring comfort and respect for their loved ones. This chapter serves as a poignant reminder that caregivers must be steadfast in their rights to demand the best care possible.
Finally, we tackle the systemic challenges plaguing senior healthcare, from understaffing and inadequate training to the pitfalls of profit-driven care models. Betsy guides us through a sobering exploration of these issues, pointing out how they result in inconsistent care for vulnerable populations, like those with Alzheimer's. With a call to action for more compassionate and consistent caregiving, she stresses the importance of prioritizing people over profits, advocating for a system that values quality care above all. Through this inspiring episode, we aim to empower caregivers to fight for the dignity and quality care their loved ones deserve.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Angela Fairhurst (00:00):
Hi. I'm Angela Fairhurst, founder of Geri
(00:02):
gadgets, a revolutionarysolution for dementia care,
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transform caregiving bypromoting engagement, improving
(00:46):
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constant supervision. Discoverhow our innovative products can
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with dementia, while easing thecaregivers burden. Visit Geri
gadgets.com to learn more andstart making every moment count
Don Priess (01:06):
for a limited time, you can get 20% off your next
order of Geri gadgets by goingto www dot SSW, ww.com, Jerry
gadgets for dementia and enterthe special love conquers all's
coupon code, LCA, 20 get 20% offJerry gadgets today,
when the world has got you down,Alzheimer's sucks. It's an equal
(01:27):
opportunity disease that chipsaway at everything we hold dear
and to date, there's no cure. Sountil there is, we continue to
fight with the most powerfultool in our arsenal love. This
is love conquers all, a real andreally positive podcast that
takes a deep dive intoeverything, Alzheimer's, The
(01:49):
Good, The Bad and everything inbetween. And now here are your
hosts, Susie singer, Carter andme. Don Priess singer, song,
sing a song.
Susie Singer Carter (02:04):
Hello everybody. I'm Susie singer
Carter,
Don Priess (02:07):
and I'm Don Priess, and this is love conquers all.
Hello, Susan, hello,
Susie Singer Carter (02:12):
Don up.
We're we're like, we're fancy.
Today, we're doing two podcastsin one day,
Don Priess (02:18):
back to back, with five minutes open in between,
Susie Singer Carter (02:21):
like, we're like, jet setters or something
like, Yeah, but, or somethinglike that, something like that,
we're having a good day. We'retalking to real, like, great
people today. So, but what elseis happening with you? Let's get
along.
Don Priess (02:37):
Anything good? Yeah, no. Well, it was, it was like
was last week, I finally decidedto take three day vacation. I
don't know the last time I tooka vacation, and we have some
friends up who have a beautifulplace up in arrowhead, and so I
was so excited, and we're gonnaplay some golf, and there's a
boat, and I drive up therebeautiful, spend the day on the
(03:01):
boat, blah, blah, blah, have anice dinner. Get up the next
morning and I'm sick as a dogand have to just drive home.
That's my that's my fun,exciting life, and nobody,
somebody does not want me to goon vacation. Thank you. The end,
(03:24):
yeah, you summoned me back. Comeback. Sorry. There's work to do.
There's work to do. Sorry. Sothere you go. That's my exciting
jet setting Murphy's Law.
Susie Singer Carter (03:39):
I'm excited about our guest today, I am too.
I've known, first of all before.
I won't give it away, but I'lljust say that I know her now
from our caregiving community,and she's become like a soul
sister to me. I just love her somuch. And she's also in our
documentary, No Country for Oldpeople too and but we haven't
had her on the show, so Ithought, how is that possible?
(04:01):
And
Don Priess (04:04):
so here we are now.
It's possible. It's possible.
Susie Singer Carter (04:08):
So Don Why don't you, why don't you give
her the illustriousintroduction?
Don Priess (04:12):
I will do that right now. Betsy Wurzel is a retired
licensed practical nurse and acaregiver to her mother in law
and her husband, Matt, after hewas diagnosed with Alzheimer's
disease while caregiving forMatt, Betsy fought against the
horrors our broken health careand long term care system, and
now she's become a fierceadvocate against ageism and
(04:34):
ableism, especially those withdementia. Her enlightening
podcast, chatting with Betsy isdesigned to embolden caregivers
through their journey coveringthe taboo topics which most
people are afraid to talk about.
She has also created a Facebooksupport group hashtag kick
Alzheimer's ass movement, whichwelcomes all dementia and is all
about support, education andinspiration. We love her spirit
(04:56):
and passion and. You too willlove the one and the only. Betsy
Betsy Wurzel, hello, Betsy.
Betsy Wurzel (05:05):
Hi Don Hi Susie, thanks for having me. Sorry.
Connection problem.
Susie Singer Carter (05:12):
That's okay. It's called a podcast, and
so we're doing gorillaproduction today. Look what I'm
doing my phone because notconnect. And so we're doing this
the old fashioned way. I'ma holdit up to my microphone and how
we're doing it, folks. But youknow what? It's all about the
(05:36):
message and what we're talkingabout the conversation. So it's
good, right?
Betsy Wurzel (05:39):
That's right, that's right. So it's all good.
Susie Singer Carter (05:43):
So I'm gonna, I'm gonna, we're gonna
try. This is like, take 17. Letme, let me, let me. Tell the
audience I wanted to talk. Iwanted to talk to Betsy about
her journey with as a caregiver,and with her husband, Matt, and
(06:06):
who had Alzheimer's, and Betsywas there from the beginning
through the through the end, allthe way, and continues to
advocate for him in His honor tothis day. So you know, where
shall we begin, Betsy, with yourjourney.
Betsy Wurzel (06:26):
Well, thank you again, Susie and Don for having
me on and you know, Susie, Ilove and admire your work. You
are a true Jersey gal after yourmom, that's for sure. How I
became an advocate, is somethingthat surprises me still, because
(06:49):
I was always very quiet and shy.
People don't believe that, butit's true. But when you have to
fight for someone I had to fightfor Josh, who has a cognitive
disability so that Josh story meon my road to advocacy, to stand
up
Susie Singer Carter (07:10):
for people.
Josh is your son, right? Josh
Betsy Wurzel (07:14):
is my son, yes, and I had to fight for him and
to get the services that he issupposed to get. And then, when
Matt was having memory problems,it annoyed me that doctors
didn't listen to us and theyjust blew us off. And when I
(07:40):
think it was 16, 2016 or 17.
When I brought a smartphone, Iwent in my car, I said, Well, no
one's going to listen to me. Imight as well go in my car and
just let it rip. And so I wentin my car and I started doing
videos on dispelling the mythsthat Alzheimer's, the old
(08:02):
people's disease. Nat was 56 thediagnosis, so that was a myth,
and showing that's picture, andtalking about caregiving. And
then I would post that indifferent groups, caregiving
groups. And I was really,
Susie Singer Carter (08:20):
you are pioneer. I mean, you know, now
it's like, it's like, that's thestandard setup is in your car,
like, I, you know, to you, kindof like, we're a pioneer in
that. Because now everybody doesdoes this. Yeah, that's great.
Yes,
Betsy Wurzel (08:39):
that's funny, because when I look at
Instagram, I say people are inthe car. I did that seven years
ago, yeah, always ahead of my mytime, and I was shocked about
the response that I received,and I always wanted someone to
discover me, or at least have meon their show, because in New
(09:03):
Jersey I went, I contacted thenews stations, radio stations,
nobody would even respond to me.
And lo and behold, in 2018Jeannie White, who station
manager pastor, will talk radionetwork saw one of my videos and
asked me to go on her show, tobe interviewed, and I was
(09:24):
shocked when she asked me tospeak weekly. And back then,
Suzie and Don caregivers werenot talking publicly. Nobody was
speaking up, and it was reallyhard to get caregivers to come
on, to speak up. There weren'tcaregiving podcasts back then,
no, but you couldn't even findinformation back
Susie Singer Carter (09:49):
then. So true. It's so true because, I
mean, when I start, when westarted, love conquers all,
which was 2020, there was like,I. Honestly, I had to search to
see what, you know, who else wasout there, because I didn't want
to, you know, do something thatmaybe other people that, if the
(10:09):
market was flooded, and I myselfcouldn't find resource for my
mom, and now, there's there, youknow, there's plenty now, yeah,
you're right. There was, therewas, it was really hard to get
resources. Just Yes, just thatlittle, you know, seven years
ago, you would think, yeah, alot has changed. You're right.
Betsy Wurzel (10:31):
So I'm really happy to see that people are
showing their journeys. They areshowing their their faces, their
names, caregivers are coming outof the dementia closet, as I
call it, people with dementiacoming out of the closet. And
this is a dream come true for mewhen I see this in social media,
(10:54):
and I have to say, like, I thinkI was a pioneer, because I would
talk about it, and my friendMarcia Burr, she would say, you
know, we got to share ourstories, and that's what we were
trying to do. And even thoughpeople could come on Jeannie
show and be anonymous, it was sodifficult getting people to come
(11:18):
on, and now it's like the marketis saturated, please. Podcast,
but I I'm very passionate Susieand Don about with my show,
chatting with Betsy is providingpeople at resources that I wish
I knew about when that wasalive, or that I wish were
(11:38):
available when he was alive,which they a lot of my resources
weren't available five yearsago. And you know, just even
like you had nurse penny on, Iwish there was hospice. Nurse
Penny five years ago, talkingabout hospice, what to look for,
(12:02):
how you should pick out ahospice. I wish I had that
information.
Susie Singer Carter (12:06):
We just spoke to another amazing person
in our in our community, PKbevel, who, who is a dementia
doula for a death doula forpeople with dementia. And you
know, there's such a differencein in, in how people exit this
world when they have dementiaand Alzheimer's, which you
(12:27):
experienced with Matt, and itwasn't you did not get the
support you needed, right? Oh,
Betsy Wurzel (12:33):
absolutely, I did not whatever hospice is supposed
to be supportive, helpful. I hadthe hospice from hell,
Susie Singer Carter (12:43):
complete opposite. What happens? Where do
you think it went wrong?
Betsy Wurzel (12:48):
It went wrong from the very beginning, when they
asked me, they said, Can thattalk? And I said, Yes, he talks.
And the nurse who did the intakefor hospice said, I'll pretend I
didn't hear that so he could geton hospice. And the hospice
(13:11):
nurse who came to visit, shesaid, Matt talks. I said, Yes,
sometimes he talks. She said,Well, if he talks in three
months, he can't be on hospice.
Susie Singer Carter (13:23):
What I said?
Betsy Wurzel (13:26):
I said, You mean to tell me that my husband, who
needs 24/7, care, hallucinating,needs total care, can't get
hospice because he sayssomething clear when you're
here. That's ridiculous. And shesaid, It's not us, it's
Medicare, and this differentprotocol for hospice with a
(13:48):
dementia client than withsomeone who has cancer.
Don Priess (13:54):
Why? So you're not, you're not allowed to talk. To
be able to talk, you're thatmeans you're not dying if you
talk, yeah, I
Betsy Wurzel (14:02):
guess. And then I've heard of this in the
caregiving community, Susie andDon of people who were denied
hospice because their loved onetalked when the person who
evaluated them was there. And Itold the hospice nurse, don't
worry, Matt won't be here inthree months. He's dying. She
(14:25):
said, he's not dying. I said,Yes, he is. Oh, he's still
eating and walking. And I said,I'm telling you, get your head
out of your textbook. Thinkoutside the box, because Matt is
terminally agitated because heis dying two weeks later, and
that was dead. Wow. They did notbelieve me that he was dying.
(14:49):
They didn't believe that I wasthey thought they tried to get
while talking about gaslighting, as you talk about in
one of your your shirt. Was thatI saw her might have been No
Country for Old people. I thinkyou talked about gaslighting the
social worker has a socialworker tried to gaslight me. She
(15:12):
accused me of not givingmedication properly. She was
talking down to me, and I puther right in her place because
you don't disrespect me and getaway with it. And I told her,
point blank, you got to changeyour attitude and talking to me
because I'm not stupid. I'm alicensed practical nurse. I gave
(15:34):
up medication for years. I'mtelling you what you're giving
that is not working, and you'regiving more the same, which is
insanity. And then she accusedme, had the audacity to say to
me, I call up hospice too much.
Nobody calls up as much as me. Isaid, Well, I'm my husband's
(15:54):
advocate, and I will call up asmuch as I want until there's a
solution to the problem, andyou're not giving me a solution.
And the witch had the nerve totell me, when I told him that
complained of a headache, shehad the nerve to tell me he
couldn't possibly have aheadache.
(16:16):
Oh, my God, I want to punch herso bad. I did. I wanted to punch
her so bad, but I'm not going tojail for anybody, right? But I
wanted to to really, she was sosarcastic and nasty. And even at
the hospital, because Matt wentup to the hospice unit in the
(16:37):
hospital, if I had a fight forthat, because myself, he fell
twice, Susie and Don and nobodywould come out to assess him.
Nobody would come out.
Susie Singer Carter (16:51):
You see, Betsy, it's so weird to me,
because, you know, it's like,you know your loved one. And I,
as I knew my loved one, right?
And I had the opposite, whereasthey were trying to overdose my
mom with drugs, as opposed togiving her, you know, what she
needed. And you know, Ipersonally didn't think my mom
(17:14):
was dying yet, which she didn'tit. You know, from the time they
put her into hospice, she theonly reason why she died six
months later is because theyrefused to to treat her stage
four wound and allowed it tojust, you know, allowed her to
succumb to it, basically. So Iwas trying to fight for my mom
to have the right to leave thethis earth when she wanted to.
(17:37):
You are trying to fight for theright to, you know, leave the
same thing, which was when youknew he was ready, and I said I
would know when my mom wasready, and and so, and this is
the misunderstanding of our ofour health care system in terms
of dementia and Alzheimer's, isthat, you know, it's too easy to
(17:59):
manipulate the system to benefitthem. In other words, I mean,
I'm not, I don't know if, for afact, this is what was happening
to you and your situation withMatt, but you know, they, they
may have seen him as being ableto bill for, you know, a longer
time, you know, is saying he'snot ready to die. We will keep
(18:24):
him alive at least for sixmonths so we can bill, whereas
my mom, because she had highcomorbidities, they were like,
Let's push her out the doorquickly, because it's going to
eat into our profits. Not to becrude, but that's what happens.
Betsy Wurzel (18:39):
It's It's terrible. My medical doctor, I
don't know this is true, Susieand Don but my medical doctor
told me that, you know, Medicaredoes pay hospice, and when they
don't use services for thatperson, they get to keep more
(19:00):
money, right? And I couldn't getanyone to come out to examine
Matt. Actually, one night hefell, and I had to wait for our
son to come home to help me gethim back up, because nobody
would come out.
Don Priess (19:19):
Well, that's because I would eat into their profit.
Yes, they would. They would thenhave to, actually, you know, pay
for that, and that would eatinto their profit. And then, and
again, a lot of this also comesdown to the the confusion that
most people have. Even theexperts of what hospice is, what
it's supposed, you know, likewith Susie's mom, they, you
know, the oh, well, in hospice,you don't get treatment for
(19:40):
anything. Well, if it's for thecomfort of their patient, then
you get treatment, right? Andand, and easing a bed sore would
be for comfort. It's not to cureher, but they wouldn't even do
that and that. So there is somuch confusion as to what
hospice actually is, and I thinkthat's something that you ran
into also,
Susie Singer Carter (19:59):
and also.
What is not you know, welladvertised, is your rights as a
whether you are the appointedcaregiver or you know of a of a
person or the person themselves,you have rights to say what you
want. It's up to you. You know,they adopt. They can advise, but
(20:19):
they don't have the right tomake the decisions for you. You
it is your right, right,
Betsy Wurzel (20:29):
and to think that people with dementia don't have
pain, they're human beings,right? And you know, I said to
social worker when that was inthe hospice unit, and I she had
a meeting with me, and I toldher, I said, I'm telling
caregivers, we're not takingthis crap anymore. You need to
(20:51):
listen to us when we tell yousomeone's dying, they're dying.
When we tell you someone's inpain, they're in pain. I said,
Who are you to tell someone thatsomebody can't be in pain. Do
you know what a dying brainfeels like? I have migraines. I
can just imagine what a dyingbrain feels like. You We don't
(21:11):
know. And Matt, very clearly,said to me, I have a headache.
Why wouldn't I believe him? Mattnever complained of pain, of
course, I believed him. I gavehim Tylenol.
Don Priess (21:26):
Yeah, you don't stop being human. You don't stop
being human when you havedementia, it's like you're still
a human being.
Betsy Wurzel (21:34):
Exactly, Don and I actually have seen this. I
worked in a state facility forthe severely disabled, and the
same thing there, the doctorswould not prescribe pain
medication with these clientshaving cancer, because they
(21:56):
think, because they'rehandicapped disabled, that they
don't feel pain. I mean, it'sjust as a right. And I always
fought for the patient, youknow, for that, for the client.
And I, you know, I believe intreating people the way I would
want my loved one treated, andthat's how I treated my patients
(22:20):
and clients, and I worked in asa nurse, and I was just so
traumatized by what I wentthrough and having to fight for
Matt had dignity at the end oflife, and when he fell, that he
fell on a Sunday morning, and itwas before Christmas, and I
(22:42):
called that, that hospice, and Isaid, I did that medication.
Matt fell out of bed. He talkedall night. It didn't work. Are
you going to come out here andassess him? The nurse said, I
don't know. I said, What do youmean? You don't know? I said,
Well, let me tell you what Iknow. I'm going to call you
every minute till you do knowwhat you're doing. And in
(23:05):
between calling you, I'm goingto call on Medicare and I'm
going to place a complaint, andthen I'm going to call up your
Regional Director and I'm goingto place a complaint and remove
math in your hospice. Oh, don'tdo that, Mrs. Sloan, so is my
married name? I'll call him mynurse manager. And then she
(23:25):
said, Oh, do you want Matt tocome up to the hospice unit? I
said, Yes, I'm having chest painhere, right? I need help. Would
you believe Don and Susie afterMatt had a one to one, because
he was so agitated. And they hada nerve to say to me, oh, Betsy,
(23:46):
now we see what you're talkingabout. Why would I make it up?
Righ
Don Priess (23:52):
to, what end to what end?
Betsy Wurzel (23:55):
What's like, what?
What's the purpose of me makingit up? And then the chaplain who
never came to visit us at home,happened to see me, came into
the room, and I told her that Iwas very upset that I think that
Matt suffered more than he didhave. Of course, Matt was doped
up. He'd just gotten hiscocktail of drugs. And she had
(24:17):
the nerve to say to me, Well,he's not suffering now. And I
said, you're going to argue withme whether he suffered or not.
And then they had the nerve,Susie and Don, when I look at it
now, I had to have a sense ofhumor. They actually had the
(24:37):
nerve to tell me he would begoing home on the following
weekend, and I said to the othersocial worker, I said, go home.
I said he still is gettingmedication through the IV
intravenous, and he's stillagitated. So you tell me? How is
(24:58):
he going to go home? She said,calm down, Betsy, we'll know,
monitor him and we'll give himmedication. By now. I said, You
know what, Mary? Let me tell yousomething. I will monitor him
myself, and if I don't thinkhe's safe or discharge, I refuse
his discharge. I will refuse totake him home because it's not
(25:19):
safe. And she said, You can't dothat. I said, you want to try
me. Just try me, because I willcall it Medicare. I know my
rights and I can refuse anunsafe discharge. I says, You
have no idea who you're talkingto. And I met with the director
of the hospice, because I hadcalled her, told her I wasn't
(25:41):
happy, and she had the nerveSuzanne Don to say to me, Oh,
I'm sorry, we apparently droppedthe ball. I said, my husband's
not a ball. He's a human being,and you wouldn't accept this
treatment. Why do you think Ishould accept the treatment that
you gave my husband, and when Ithey told me that he would be
(26:04):
going home or could be goinghome, I went into the director
of hospice, and I said, if Mattgoes home, which I know he's not
going to I said, if he goeshome. And so help me if an RN
doesn't come out when I needone, my next call is to your CEO
of this hospital or thiscompany, and she handed me her
(26:25):
card. She said, You call me 24/7Betsy, if somebody doesn't come
out,
Susie Singer Carter (26:35):
let's see.
Here's the thing, listeners likeyou shouldn't have to be you
shouldn't have to fight thathard. Exactly. You just
shouldn't. And that's not,that's not, you know, we're
already vulnerable. And like yousaid, you were, you weren't
feeling good from all thestress. And you know, just
having to take care of it. Andyou know, we all know that
(26:58):
caregivers compromise their ownhealth when they're caregiving.
It's just, it just part of theof the of the job, right? It
happens, and we have to reallytake care of our own health.
Otherwise we can. We can getsicker than the people we're
taking care of. And so, youknow, it, it, it shouldn't have
(27:19):
to that pressure shouldn't be,you know, have to be put upon
us. And you happen to be, as wesaid, fierce and fearless. Many
people aren't, and many peoplealso, when someone walks in with
a with a white, you know, scrubon or, or, you know, because
(27:40):
nobody wears white coatsanymore, right? But when someone
comes in with a doctor's badgeand or a nurse's badge, many
people just go with the flow andgo, Well, that's what the doctor
said. You know, it's the expert.
They're the expert and, and, youknow, you it should be that way.
You should be able to rely onthat expertise, but as both you
(28:04):
and I know from personalexperience, that is not the case
in many, many, many situations.
So and not everybody has Betsyas their wife or daughter or
sister or mother and so, youknow, we're if it, if we're in,
if it's us, and we don't have aBetsy, we're up shits Creek.
Don Priess (28:30):
You're screwed and and the thing is, so much of
these decisions are not beingmade on a medical basis. They're
maybe made on a financial basis.
Money is driving the decisionsthat are being made. Some of
these people, they're notthey're being told what they
need to tell you. They're noteven making the decision. And
it's a one size fits all modelwhere, basically, you know, if
(28:50):
you're in this category, theydon't look at the individual and
what their individual needs areand situations and making
decisions on that. It's like, ifthey fit into this box. That's
the decision that's made, andthat's usually because of the
finances, and so that's, that'swhat we're up against, and
that's what you were up against
Susie Singer Carter (29:10):
totally.
And I mean, that's and that is,it's what I'm trying to it's why
I wanted to have Betsy on totalk about this, you know, which
you do in our documentary aswell, because it's just such an
important topic that, you know,the ages of enable ism that
accompanies Alzheimer's and isso prevalent in our in our
(29:30):
society, but but in our healthcare system and and it's really
used to their benefit, you know,to be able to play into those
stereotypes so it whatever suitsthem, like I said earlier that
you wanted more medication, youcouldn't get it. I wanted less
(29:51):
medication and more care interms of of what of the
comorbidities that they hadcaused. Caused, and I couldn't
get that. It was like, no, let'sjust drug her till she can't
you, basically, till she's azombie when she wasn't what,
because they don't want to takecare of her wound and what? What
accompanies those kinds ofwounds, whereas you are. And I
(30:15):
knew my mother well enough toknow that she needed that care,
whether or not she was going todie. She needed that care. Why
would you drug Why would yousteal the last whatever months
of her life, torturing her
Betsy Wurzel (30:34):
Exactly? Why can't there be dignity and make
someone comfortable that that'swhat they, you know, want.
That's why I wanted for Matt. Ididn't want him to suffer. I
want.
Don Priess (30:48):
That's what hospice is for. Yeah, that's what
hospice is supposed to be,
Betsy Wurzel (30:53):
you know, a source of comfort. And the social
worker said to me, oh, Betsy,you fought hard for Matt to come
up here. And I said yes, and Ishouldn't have had to. I
shouldn't have had to fight thathard to be all stressed out and
aggravated. No, and that's whythe holidays is like the worst
time for me, because Matt wasdying from Thanksgiving through
(31:16):
he died New Year's Day 2020, andI knew that when Matt went up to
that hospice, he wasn't cominghome, that hospice was so
incompetent they thought he wasjust going up to get medication
adjustment. That's howincompetent they were, and that
Susie Singer Carter (31:33):
was in the hospital, right? Yeah,
Betsy Wurzel (31:36):
the hospice we had came out from our local
hospital, which is part of ahuge medical health care system
in New Jersey, right? I won'tsay the name, but it's a huge
medical system, right? And theirhospice was absolutely terrible.
(31:57):
Actually, I fired the the aide.
One time they the aid came. Ihad left the room for like 30
seconds, and that was kind ofnext thing I know, he's
screaming. And Josh told me thatthe aide lifted that up abruptly
underneath his armpits. Andthen, of course, he was
(32:18):
agitated. Then she had the nerveto tell me make sure Mr. Sloan
is medicated when I come I saidhe was medicated for your
information, and now I have tomedicate him again, because you
agitated. It.
Susie Singer Carter (32:32):
It's a vicious cycle, because that kind
of, that kind of caregiver thatyou're talking about really
comes again is it's a it's aresult of our of our system,
because it's understaffed andunder trained. And people who
went into this career, you know,vocationally, who had a desire
(32:58):
and a passion for it, are notstaying because they can't do
the job that they want to do,because they're not paid. Well,
they're overworked, and they'rejust abused. They're abused. So
you get these people that aredoing this as a side gig, and
they don't really care, andthey're in it to for their
hours, and then they're gone.
And that doesn't work for peopleyou can't you need consistency
(33:18):
when you're dealing with people,especially who have Alzheimer's,
who's you know, where you knowyou can't just have these aren't
these aren't widgets. This isn'tlike you're washing the car.
This is your your you're takingcare of a human being. And all
of us are uniquely different.
And you know, one person mightnot you know, mind being handled
(33:43):
a certain way, and anotherperson will, but that's what
consistency of care can candeals with, and that's where
that's so important when itcomes to, you know, keep keeping
the right kind of staff. And ifwe, if we continue to allow this
(34:04):
business model that is profitover people and is extracting,
you know, as much profit as theycan from the system, we will
continue to get the minimum carefor ourselves and for our loved
ones,
Don Priess (34:23):
we'll be right back.
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Betsy Wurzel (35:24):
I filed formal complaints with the New Jersey
State Health Department and withMedicare's quality insurance
department.
Susie Singer Carter (35:34):
What happened? What happened? Did you
get any responses?
Betsy Wurzel (35:39):
I did get a response that they didn't see
any violations. There was no substandard of care. And I said,
Are you kidding me? Someonefalls twice, and nobody comes
out. And that's not sub standardcare.
Susie Singer Cart (35:54):
Unbelievable.
It's not unbelievable, though. Isay unbelievable, but it's not
unbelievable because you're you.
I hear this. I've heard thiswith so many people that I've
interviewed. You know, for thedocumentary, on our podcast,
it's, it's the complaints fallon death, death ear, death. That
deaf ears. There's, there yougo. Freudian slip on deaf ears
(36:17):
because there isn't enough.
Again, there's just not enoughmotivation or incentive to make
do anything about it, you know.
So, so it's basically, it's gothrough the motions. It's, it's,
it's all performative. Andthat's why things really need to
(36:40):
change fundamentally, becausethe oversight stinks, the
enforcement stinks, and youknow, the regulations, which
are, there are, are justperformative. They really don't
mean anything. They're theypacify, they mollify, you know,
the public. So the publicthinks, well, there are,
(37:00):
there's, there's regulations,and, you know, there's, there's
staffing regulations that thereare, but nobody's adhering to
them.
Betsy Wurzel (37:09):
That's very, very true. Even the hospice doctor
said, you know, his hands aretied, and they had to follow
strict protocol for someone justto come up to the hospice unit,
and even if they do follow theprotocol of Medicare thinks they
made a mistake, Medicare willtake away their payment, right?
(37:33):
And it's really sad, and it'sreally sad that people think
that they could treat someonewho is mentally disabled or has
any kind of dementia, any waythey want, and it's okay. Well,
it's not okay when it's my lovedone, because I'm a mama bear,
(37:53):
and they saw that I actually hadpeople coming into the room.
They pretended to see how Mattwas doing. They really want to
see who the big mouth was.
Susie Singer Carter (38:04):
You're lucky. I mean, I am. I have a
different tactic. You know, Iwas never I always was. I tried
to not upset the apple cart toomuch, because I knew I could
feel the retaliation, and Icould feel them like, I mean,
it's not even feeling it wasobvious. I mean, I'd walk into
the facility and I got juststink eye from everybody, and I
(38:29):
didn't yell ever. I was like, sorespectful, but I didn't I was
relentless, but I was respectfuland kind, and I still got
retaliation from, you know, thefrom the administration, and I
got a lot of lip service, and Igot a lot of gas lighting. So it
(38:53):
doesn't, it doesn't surprise me,you know, I mean, I got locked
out of the room for God's sakesthey, I got to the point where
they were like, you're notallowed in the room when they
were changing my mom and I waslike, What do you because
Don Priess (39:06):
they didn't want you to see the bed sore. Yeah, they
didn't, yeah, they didn't. Like,what
Susie Singer Carter (39:10):
do you mean? I'm her conservator
person. I am her legal, youknow, Guardian, yep, well, you
have to go out of the room bythey would literally, like,
forced me out of the room, and Iit was like, I had to, you know,
choose my battles, as it were.
But God, we shouldn't have to gothrough this. So what do you
(39:32):
think? The answer is,
Betsy Wurzel (39:37):
you know, I think it's better. I should be better
training, better education, andI really hope that hospices
globally will start to changetheir idea of what terminally
agitated looks like with someonewho has younger onset
(39:58):
Alzheimer's not. Everyone'sgoing to fit that picture of
someone dying in a bed. Theycould be walking around and
dying, and they need to startrealizing this. They probably
will, in about five or 10 years,say, oh, you know, people with
young onset have differentsymptoms. When they're
(40:18):
terminally agitated. They needmore funding, they need more
education, they need morestaffing. And staffing has
always been a problem. Inhospitals, I could tell you
that. And nursing homes, it'salways been a problem, right?
And I can testify to thatbecause I worked in them, and I
(40:40):
saw what went on, and it'sterrible. Better, I think better
education, better, much higherstaffing.
Susie Singer Carter (40:52):
And I think too for listeners, is that, you
know, it is that bias against,there's a there's a fear that
comes in, a bias aboutAlzheimer's and dementia, and
people are repulsed sometimes,or so frightened that they can't
(41:14):
look at it and it and so It'sit's like, that's why so many
people with that disease arehidden away and and, and people
have somehow accepted it, thatit's okay, and, and, you know,
(41:35):
convince themselves that thatbecause of this Disease, they're
not really feeling it. They'renot really experiencing pain or
sadness or loneliness or any ofthe the human things that make
up a human being, so and and soI think that also I'm on my
(41:55):
soapbox right now, but I thinkthat also a lot of a lot of this
responsibility relies on thepublic to say we care. We give
it. We give a shit about peoplewho, even though they may be
dying in a year or two, will soMay. So might you. So might all
of us. We don't know what'sgoing to happen to us. So life
(42:17):
is precious when you have it,and everybody deserves the care
and and respect and dignity likeyou said to to to get what they
deserve, which is, you know, ifyou paid into Medicare and
Medicaid your whole life, youdeserve that money to go to your
(42:39):
care and how you want to Use it.
No one's telling you how tospend your Social Security.
That's your money, right?
Betsy Wurzel (42:46):
That's right, that's right. I think doctors
and nurses need to listen. Andif I could give any advice, I
would say, you know, educateyourself, hire someone if you
could afford it. To help younavigate hospice, plan ahead.
Start looking into hospice. Inormally put it all off until I
(43:13):
couldn't anymore, because I wasat the end of my rope, but I
didn't know about doulas weren'treally a big thing five years
ago, four and a half years ago,true.
Susie Singer Carter (43:26):
That's great advice. That's great
advice because I did the same asyou and I think that we, you
know, we, we do that for a lotof reasons, right and and for
personal reasons, and for ourown fear and our own, you know,
denial. Sometimes I'm speakingfor myself, but you know, I was,
(43:50):
I didn't want to anyone to godown that road, yet, I didn't
think my mom needed it. But Ithink it's better to be
prepared, like you said, andand, and know what you're what
you're getting into beforeyou're in in a crisis situation
where you have to make rashdecisions and you can't make an
intelligent decision unless youunless you've done your
(44:12):
homework, Right exactly?
Betsy Wurzel (44:15):
I'm thankful that right after Matt was diagnosed,
you know he did a living will.
So I know that. You know, hedidn't want a feeding tube. He
wanted, you know, comfort here,and that's what I you know,
that's what he had. Matt hadlost so much weight his last
year of life. The doctor,neurologist said, Oh, well, Matt
(44:38):
could have the feeding tube. AndI went, why? Why would I want to
prolong his agony? Right? No, Isaid, No, he's not going to have
a feeding tube. And I reallythink that everyone should treat
people with respect and dignity.
(45:00):
No matter what they have and whothey are, we're all human
beings. And that's the thingthat is so missing sometimes
from medical personnel, istreating people with respect and
dignity, and I've seen it when Iworked in the state institution.
(45:27):
I talked to the clients, andthey would say, Betsy, who are
you talking to? I startedtalking to the clients. Don't
you know they can't talk,because I know they can't talk,
but they can hear, and they'rehuman, and they want, like
people, talk to them, theysmile, they laugh,
Don Priess (45:45):
and they can tell you're they can feel you're
there. Just the fact that you'rethere is makes a huge
difference. They understandintent, they understand caring,
and they certainly understandnot caring. They, you know,
they'll, I watched, you know,Susie's mom, depending on the on
the nurse that came in, how shewould react just physically to
(46:09):
this either positive or negativepresence that came into the
room, yeah, and, and I thinkthat, you know, a lot of that
comes with, you know, educationwithin, you know, it's not only
educating ourselves that,hopefully, that the medical
field educates people that thisisn't they're not widgets. They
are not they are human beings.
And so many, there's so manylovely nurses and doctors who
(46:31):
really do care. And thedifference is amazing. But
there's so many where theyliterally, I watched Susie's mom
being handled. And we actuallyhave some of it on video, and
it's in the documentary as ifshe was a piece of furniture.
Yeah, and my mom's vacation,yeah,
Susie Singer Carter (46:50):
my mom's crying out in pain. I'm going,
she's, you're hurting her.
You're hurting her. She's like,I Okay. I mean, like,
Don Priess (46:58):
or nothing or no.
Response, yeah. And, and so, sois there anything that you feel
that you would have donedifferently along your path? I
mean, you don't want with noregrets. Just saying, now that I
know what I know, is theresomething that you thought you
could have handled differently?
Betsy Wurzel (47:17):
Yeah, what I would have done was, ahead of time,
look at different hospices,
Don Priess (47:24):
education, yeah, yeah, yeah, but you don't even
know that that's an option.
Susie didn't even know thatthere was an option for another
hospice, or she could quithospice. She didn't know any of
that.
Susie Singer Carter (47:36):
But that's why we're doing this doc, this
document, and when doing thisepisode is like, I want people
to know you have a choice.
You're not stuck with the withthat hospice, there's other
hospices. If you don't likewhat's going on, you need to
speak up. You know your personbetter than anyone else. If
someone tells you something andit and you get that pang of
like, Hmm, you know, listen toit. You're you know better. They
(47:59):
don't know better. They theyknow, you know, medical things
that that are like by the book,that's it. But when it comes to
common sense, you know, I mean,I, I, we have, we have to wrap
up. But I just want to say, likemy, I had a friend, a
girlfriend, whose mom was in thesame facility as my mom. And
(48:20):
before my mom passed away, hermom did not have dementia, and
she told me she would, they'reputting her mom in hospice. And
I said, Oh, I'm so sorry. Youknow what? Why? And she said, I
don't know. She's they just saidshe's, you know it, she's ready
for hospice. And she had, shehad came from out of state to be
(48:42):
with her mom, and she said tome, we had coffee. She said, My
mom was saying to me, am I dyingbecause I because she didn't she
could talk. She was like, Am Idying because I'm not ready to
die? And I told my friend, yourmom's not ready to die. She's
telling you, I mean, she doesn'twant to die. She died two days
later because they, because theymedicated her so much. And so
(49:06):
that's the other that's theother end of the spectrum. So
what I'm saying, and I'm tellingyou this because I'm saying,
listen to your loved one, ifthey can talk, listen to your
intuition, if they can, yes,
Betsy Wurzel (49:24):
yeah, definitely follow your gut instinct, which
I have always done. That's how Iknew that Matt was dying, right?
I just knew it, but they didn'tbelieve me, and that's the thing
that they need to listen andrespect the family members. And
(49:48):
just want to tell the audience,you know, there's a lot of good
hospices out there, a lot ofnurses and doctors out there.
I'm not knocking them. There's alot of great people in
profession, just like anythingelse, there's also. The bad
apples, and definitely do yourhomework ahead of time. It was a
little I knew I could changehospices, but it was really too
(50:10):
late for Matt, for me to changeand this was local. And then I
know that some hospices Medicaredoesn't approve of and so they
have you over the barrel. Youhave to go where they're going
to pay. She can afford out ofpocket, right?
Susie Singer Carter (50:32):
And I want to reiterate too that thank you
for sharing your story. Betsy, Iwant to reiterate that there are
good hospices. There are greatpeople, as I said before, but,
you know, the system is isgeared towards making it very
difficult for those good peopleto do their jobs the way they
want to. And and the people thatare and the and the hospices
(50:56):
that are, you know, family runor non profit, many of them are
doing the best job they canwithin the system as it is. So
we need to make it easier onthem, easier on the good on on
the frontline providers thatwant to do a good job and that,
you know, and so that they arenot feeling this moral injury,
(51:20):
which is really destructive. Andmany, I mean, many doctors, many
nurses, are dying of suicidethan ever before. So, and
they're, they're very, veryconflicted, and it's just a
vicious cycle. So again, it allcomes down to the system, and
(51:43):
but in the meantime, everythingthat Betsy said and that we
talked about, I hope, will behelpful to everyone listening. I
love you, Betsy. We love havingyou here. Thank you so much. And
you know, our podcast is allabout love, right?
Don Priess (52:01):
It's all about love, and that's because love is
powerful, love is contagious,and love conquers all we thank
Betsy for being with us today.
If you like what you saw orheard today, then please like it
and then share it and subscribeand do all those fun things. And
yeah, we will hopefully see younext time on Love conquers
(52:22):
halls. Everyone. Have a greatday
Susie Singer Carter (52:25):
care. Bye, thank
Betsy Wurzel (52:26):
you. Bye, bye.
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opportunity disease that chipsaway at everything we hold dear
and to date, there's no cure. Sountil there is, we continue to
fight with the most powerfultool in our arsenal love. This
is love conquers all, a real andreally positive podcast that
takes a deep dive intoeverything, Alzheimer's, The
(01:49):
Good, The Bad and everything inbetween. And now here are your
hosts, Susie singer, Carter andme. Don Priess singer, song,
sing a song.
Susie Singer Carter (02:04):
Hello everybody. I'm Susie singer
Carter,
Don Priess (02:07):
and I'm Don Priess, and this is love conquers all.
Hello, Susan, hello,
Susie Singer Carter (02:12):
Don up.
We're we're like, we're fancy.
Today, we're doing two podcastsin one day,
Don Priess (02:18):
back to back, with five minutes open in between,
Susie Singer Carter (02:21):
like, we're like, jet setters or something
like, Yeah, but, or somethinglike that, something like that,
we're having a good day. We'retalking to real, like, great
people today. So, but what elseis happening with you? Let's get
along.
Don Priess (02:37):
Anything good? Yeah, no. Well, it was, it was like
was last week, I finally decidedto take three day vacation. I
don't know the last time I tooka vacation, and we have some
friends up who have a beautifulplace up in arrowhead, and so I
was so excited, and we're gonnaplay some golf, and there's a
boat, and I drive up therebeautiful, spend the day on the
(03:01):
boat, blah, blah, blah, have anice dinner. Get up the next
morning and I'm sick as a dogand have to just drive home.
That's my that's my fun,exciting life, and nobody,
somebody does not want me to goon vacation. Thank you. The end,
(03:24):
yeah, you summoned me back. Comeback. Sorry. There's work to do.
There's work to do. Sorry. Sothere you go. That's my exciting
jet setting Murphy's Law.
Susie Singer Carter (03:39):
I'm excited about our guest today, I am too.
I've known, first of all before.
I won't give it away, but I'lljust say that I know her now
from our caregiving community,and she's become like a soul
sister to me. I just love her somuch. And she's also in our
documentary, No Country for Oldpeople too and but we haven't
had her on the show, so Ithought, how is that possible?
(04:01):
And
Don Priess (04:04):
so here we are now.
It's possible. It's possible.
Susie Singer Carter (04:08):
So Don Why don't you, why don't you give
her the illustriousintroduction?
Don Priess (04:12):
I will do that right now. Betsy Wurzel is a retired
licensed practical nurse and acaregiver to her mother in law
and her husband, Matt, after hewas diagnosed with Alzheimer's
disease while caregiving forMatt, Betsy fought against the
horrors our broken health careand long term care system, and
now she's become a fierceadvocate against ageism and
(04:34):
ableism, especially those withdementia. Her enlightening
podcast, chatting with Betsy isdesigned to embolden caregivers
through their journey coveringthe taboo topics which most
people are afraid to talk about.
She has also created a Facebooksupport group hashtag kick
Alzheimer's ass movement, whichwelcomes all dementia and is all
about support, education andinspiration. We love her spirit
(04:56):
and passion and. You too willlove the one and the only. Betsy
Betsy Wurzel, hello, Betsy.
Betsy Wurzel (05:05):
Hi Don Hi Susie, thanks for having me. Sorry.
Connection problem.
Susie Singer Carter (05:12):
That's okay. It's called a podcast, and
so we're doing gorillaproduction today. Look what I'm
doing my phone because notconnect. And so we're doing this
the old fashioned way. I'ma holdit up to my microphone and how
we're doing it, folks. But youknow what? It's all about the
(05:36):
message and what we're talkingabout the conversation. So it's
good, right?
Betsy Wurzel (05:39):
That's right, that's right. So it's all good.
Susie Singer Carter (05:43):
So I'm gonna, I'm gonna, we're gonna
try. This is like, take 17. Letme, let me, let me. Tell the
audience I wanted to talk. Iwanted to talk to Betsy about
her journey with as a caregiver,and with her husband, Matt, and
(06:06):
who had Alzheimer's, and Betsywas there from the beginning
through the through the end, allthe way, and continues to
advocate for him in His honor tothis day. So you know, where
shall we begin, Betsy, with yourjourney.
Betsy Wurzel (06:26):
Well, thank you again, Susie and Don for having
me on and you know, Susie, Ilove and admire your work. You
are a true Jersey gal after yourmom, that's for sure. How I
became an advocate, is somethingthat surprises me still, because
(06:49):
I was always very quiet and shy.
People don't believe that, butit's true. But when you have to
fight for someone I had to fightfor Josh, who has a cognitive
disability so that Josh story meon my road to advocacy, to stand
up
Susie Singer Carter (07:10):
for people.
Josh is your son, right? Josh
Betsy Wurzel (07:14):
is my son, yes, and I had to fight for him and
to get the services that he issupposed to get. And then, when
Matt was having memory problems,it annoyed me that doctors
didn't listen to us and theyjust blew us off. And when I
(07:40):
think it was 16, 2016 or 17.
When I brought a smartphone, Iwent in my car, I said, Well, no
one's going to listen to me. Imight as well go in my car and
just let it rip. And so I wentin my car and I started doing
videos on dispelling the mythsthat Alzheimer's, the old
(08:02):
people's disease. Nat was 56 thediagnosis, so that was a myth,
and showing that's picture, andtalking about caregiving. And
then I would post that indifferent groups, caregiving
groups. And I was really,
Susie Singer Carter (08:20):
you are pioneer. I mean, you know, now
it's like, it's like, that's thestandard setup is in your car,
like, I, you know, to you, kindof like, we're a pioneer in
that. Because now everybody doesdoes this. Yeah, that's great.
Yes,
Betsy Wurzel (08:39):
that's funny, because when I look at
Instagram, I say people are inthe car. I did that seven years
ago, yeah, always ahead of my mytime, and I was shocked about
the response that I received,and I always wanted someone to
discover me, or at least have meon their show, because in New
(09:03):
Jersey I went, I contacted thenews stations, radio stations,
nobody would even respond to me.
And lo and behold, in 2018Jeannie White, who station
manager pastor, will talk radionetwork saw one of my videos and
asked me to go on her show, tobe interviewed, and I was
(09:24):
shocked when she asked me tospeak weekly. And back then,
Suzie and Don caregivers werenot talking publicly. Nobody was
speaking up, and it was reallyhard to get caregivers to come
on, to speak up. There weren'tcaregiving podcasts back then,
no, but you couldn't even findinformation back
Susie Singer Carter (09:49):
then. So true. It's so true because, I
mean, when I start, when westarted, love conquers all,
which was 2020, there was like,I. Honestly, I had to search to
see what, you know, who else wasout there, because I didn't want
to, you know, do something thatmaybe other people that, if the
(10:09):
market was flooded, and I myselfcouldn't find resource for my
mom, and now, there's there, youknow, there's plenty now, yeah,
you're right. There was, therewas, it was really hard to get
resources. Just Yes, just thatlittle, you know, seven years
ago, you would think, yeah, alot has changed. You're right.
Betsy Wurzel (10:31):
So I'm really happy to see that people are
showing their journeys. They areshowing their their faces, their
names, caregivers are coming outof the dementia closet, as I
call it, people with dementiacoming out of the closet. And
this is a dream come true for mewhen I see this in social media,
(10:54):
and I have to say, like, I thinkI was a pioneer, because I would
talk about it, and my friendMarcia Burr, she would say, you
know, we got to share ourstories, and that's what we were
trying to do. And even thoughpeople could come on Jeannie
show and be anonymous, it was sodifficult getting people to come
(11:18):
on, and now it's like the marketis saturated, please. Podcast,
but I I'm very passionate Susieand Don about with my show,
chatting with Betsy is providingpeople at resources that I wish
I knew about when that wasalive, or that I wish were
(11:38):
available when he was alive,which they a lot of my resources
weren't available five yearsago. And you know, just even
like you had nurse penny on, Iwish there was hospice. Nurse
Penny five years ago, talkingabout hospice, what to look for,
(12:02):
how you should pick out ahospice. I wish I had that
information.
Susie Singer Carter (12:06):
We just spoke to another amazing person
in our in our community, PKbevel, who, who is a dementia
doula for a death doula forpeople with dementia. And you
know, there's such a differencein in, in how people exit this
world when they have dementiaand Alzheimer's, which you
(12:27):
experienced with Matt, and itwasn't you did not get the
support you needed, right? Oh,
Betsy Wurzel (12:33):
absolutely, I did not whatever hospice is supposed
to be supportive, helpful. I hadthe hospice from hell,
Susie Singer Carter (12:43):
complete opposite. What happens? Where do
you think it went wrong?
Betsy Wurzel (12:48):
It went wrong from the very beginning, when they
asked me, they said, Can thattalk? And I said, Yes, he talks.
And the nurse who did the intakefor hospice said, I'll pretend I
didn't hear that so he could geton hospice. And the hospice
(13:11):
nurse who came to visit, shesaid, Matt talks. I said, Yes,
sometimes he talks. She said,Well, if he talks in three
months, he can't be on hospice.
Susie Singer Carter (13:23):
What I said?
Betsy Wurzel (13:26):
I said, You mean to tell me that my husband, who
needs 24/7, care, hallucinating,needs total care, can't get
hospice because he sayssomething clear when you're
here. That's ridiculous. And shesaid, It's not us, it's
Medicare, and this differentprotocol for hospice with a
(13:48):
dementia client than withsomeone who has cancer.
Don Priess (13:54):
Why? So you're not, you're not allowed to talk. To
be able to talk, you're thatmeans you're not dying if you
talk, yeah, I
Betsy Wurzel (14:02):
guess. And then I've heard of this in the
caregiving community, Susie andDon of people who were denied
hospice because their loved onetalked when the person who
evaluated them was there. And Itold the hospice nurse, don't
worry, Matt won't be here inthree months. He's dying. She
(14:25):
said, he's not dying. I said,Yes, he is. Oh, he's still
eating and walking. And I said,I'm telling you, get your head
out of your textbook. Thinkoutside the box, because Matt is
terminally agitated because heis dying two weeks later, and
that was dead. Wow. They did notbelieve me that he was dying.
(14:49):
They didn't believe that I wasthey thought they tried to get
while talking about gaslighting, as you talk about in
one of your your shirt. Was thatI saw her might have been No
Country for Old people. I thinkyou talked about gaslighting the
social worker has a socialworker tried to gaslight me. She
(15:12):
accused me of not givingmedication properly. She was
talking down to me, and I puther right in her place because
you don't disrespect me and getaway with it. And I told her,
point blank, you got to changeyour attitude and talking to me
because I'm not stupid. I'm alicensed practical nurse. I gave
(15:34):
up medication for years. I'mtelling you what you're giving
that is not working, and you'regiving more the same, which is
insanity. And then she accusedme, had the audacity to say to
me, I call up hospice too much.
Nobody calls up as much as me. Isaid, Well, I'm my husband's
(15:54):
advocate, and I will call up asmuch as I want until there's a
solution to the problem, andyou're not giving me a solution.
And the witch had the nerve totell me, when I told him that
complained of a headache, shehad the nerve to tell me he
couldn't possibly have aheadache.
(16:16):
Oh, my God, I want to punch herso bad. I did. I wanted to punch
her so bad, but I'm not going tojail for anybody, right? But I
wanted to to really, she was sosarcastic and nasty. And even at
the hospital, because Matt wentup to the hospice unit in the
(16:37):
hospital, if I had a fight forthat, because myself, he fell
twice, Susie and Don and nobodywould come out to assess him.
Nobody would come out.
Susie Singer Carter (16:51):
You see, Betsy, it's so weird to me,
because, you know, it's like,you know your loved one. And I,
as I knew my loved one, right?
And I had the opposite, whereasthey were trying to overdose my
mom with drugs, as opposed togiving her, you know, what she
needed. And you know, Ipersonally didn't think my mom
(17:14):
was dying yet, which she didn'tit. You know, from the time they
put her into hospice, she theonly reason why she died six
months later is because theyrefused to to treat her stage
four wound and allowed it tojust, you know, allowed her to
succumb to it, basically. So Iwas trying to fight for my mom
to have the right to leave thethis earth when she wanted to.
(17:37):
You are trying to fight for theright to, you know, leave the
same thing, which was when youknew he was ready, and I said I
would know when my mom wasready, and and so, and this is
the misunderstanding of our ofour health care system in terms
of dementia and Alzheimer's, isthat, you know, it's too easy to
(17:59):
manipulate the system to benefitthem. In other words, I mean,
I'm not, I don't know if, for afact, this is what was happening
to you and your situation withMatt, but you know, they, they
may have seen him as being ableto bill for, you know, a longer
time, you know, is saying he'snot ready to die. We will keep
(18:24):
him alive at least for sixmonths so we can bill, whereas
my mom, because she had highcomorbidities, they were like,
Let's push her out the doorquickly, because it's going to
eat into our profits. Not to becrude, but that's what happens.
Betsy Wurzel (18:39):
It's It's terrible. My medical doctor, I
don't know this is true, Susieand Don but my medical doctor
told me that, you know, Medicaredoes pay hospice, and when they
don't use services for thatperson, they get to keep more
(19:00):
money, right? And I couldn't getanyone to come out to examine
Matt. Actually, one night hefell, and I had to wait for our
son to come home to help me gethim back up, because nobody
would come out.
Don Priess (19:19):
Well, that's because I would eat into their profit.
Yes, they would. They would thenhave to, actually, you know, pay
for that, and that would eatinto their profit. And then, and
again, a lot of this also comesdown to the the confusion that
most people have. Even theexperts of what hospice is, what
it's supposed, you know, likewith Susie's mom, they, you
know, the oh, well, in hospice,you don't get treatment for
(19:40):
anything. Well, if it's for thecomfort of their patient, then
you get treatment, right? Andand, and easing a bed sore would
be for comfort. It's not to cureher, but they wouldn't even do
that and that. So there is somuch confusion as to what
hospice actually is, and I thinkthat's something that you ran
into also,
Susie Singer Carter (19:59):
and also.
What is not you know, welladvertised, is your rights as a
whether you are the appointedcaregiver or you know of a of a
person or the person themselves,you have rights to say what you
want. It's up to you. You know,they adopt. They can advise, but
(20:19):
they don't have the right tomake the decisions for you. You
it is your right, right,
Betsy Wurzel (20:29):
and to think that people with dementia don't have
pain, they're human beings,right? And you know, I said to
social worker when that was inthe hospice unit, and I she had
a meeting with me, and I toldher, I said, I'm telling
caregivers, we're not takingthis crap anymore. You need to
(20:51):
listen to us when we tell yousomeone's dying, they're dying.
When we tell you someone's inpain, they're in pain. I said,
Who are you to tell someone thatsomebody can't be in pain. Do
you know what a dying brainfeels like? I have migraines. I
can just imagine what a dyingbrain feels like. You We don't
(21:11):
know. And Matt, very clearly,said to me, I have a headache.
Why wouldn't I believe him? Mattnever complained of pain, of
course, I believed him. I gavehim Tylenol.
Don Priess (21:26):
Yeah, you don't stop being human. You don't stop
being human when you havedementia, it's like you're still
a human being.
Betsy Wurzel (21:34):
Exactly, Don and I actually have seen this. I
worked in a state facility forthe severely disabled, and the
same thing there, the doctorswould not prescribe pain
medication with these clientshaving cancer, because they
(21:56):
think, because they'rehandicapped disabled, that they
don't feel pain. I mean, it'sjust as a right. And I always
fought for the patient, youknow, for that, for the client.
And I, you know, I believe intreating people the way I would
want my loved one treated, andthat's how I treated my patients
(22:20):
and clients, and I worked in asa nurse, and I was just so
traumatized by what I wentthrough and having to fight for
Matt had dignity at the end oflife, and when he fell, that he
fell on a Sunday morning, and itwas before Christmas, and I
(22:42):
called that, that hospice, and Isaid, I did that medication.
Matt fell out of bed. He talkedall night. It didn't work. Are
you going to come out here andassess him? The nurse said, I
don't know. I said, What do youmean? You don't know? I said,
Well, let me tell you what Iknow. I'm going to call you
every minute till you do knowwhat you're doing. And in
(23:05):
between calling you, I'm goingto call on Medicare and I'm
going to place a complaint, andthen I'm going to call up your
Regional Director and I'm goingto place a complaint and remove
math in your hospice. Oh, don'tdo that, Mrs. Sloan, so is my
married name? I'll call him mynurse manager. And then she
(23:25):
said, Oh, do you want Matt tocome up to the hospice unit? I
said, Yes, I'm having chest painhere, right? I need help. Would
you believe Don and Susie afterMatt had a one to one, because
he was so agitated. And they hada nerve to say to me, oh, Betsy,
(23:46):
now we see what you're talkingabout. Why would I make it up?
Righ
Don Priess (23:52):
to, what end to what end?
Betsy Wurzel (23:55):
What's like, what?
What's the purpose of me makingit up? And then the chaplain who
never came to visit us at home,happened to see me, came into
the room, and I told her that Iwas very upset that I think that
Matt suffered more than he didhave. Of course, Matt was doped
up. He'd just gotten hiscocktail of drugs. And she had
(24:17):
the nerve to say to me, Well,he's not suffering now. And I
said, you're going to argue withme whether he suffered or not.
And then they had the nerve,Susie and Don, when I look at it
now, I had to have a sense ofhumor. They actually had the
(24:37):
nerve to tell me he would begoing home on the following
weekend, and I said to the othersocial worker, I said, go home.
I said he still is gettingmedication through the IV
intravenous, and he's stillagitated. So you tell me? How is
(24:58):
he going to go home? She said,calm down, Betsy, we'll know,
monitor him and we'll give himmedication. By now. I said, You
know what, Mary? Let me tell yousomething. I will monitor him
myself, and if I don't thinkhe's safe or discharge, I refuse
his discharge. I will refuse totake him home because it's not
(25:19):
safe. And she said, You can't dothat. I said, you want to try
me. Just try me, because I willcall it Medicare. I know my
rights and I can refuse anunsafe discharge. I says, You
have no idea who you're talkingto. And I met with the director
of the hospice, because I hadcalled her, told her I wasn't
(25:41):
happy, and she had the nerveSuzanne Don to say to me, Oh,
I'm sorry, we apparently droppedthe ball. I said, my husband's
not a ball. He's a human being,and you wouldn't accept this
treatment. Why do you think Ishould accept the treatment that
you gave my husband, and when Ithey told me that he would be
(26:04):
going home or could be goinghome, I went into the director
of hospice, and I said, if Mattgoes home, which I know he's not
going to I said, if he goeshome. And so help me if an RN
doesn't come out when I needone, my next call is to your CEO
of this hospital or thiscompany, and she handed me her
(26:25):
card. She said, You call me 24/7Betsy, if somebody doesn't come
out,
Susie Singer Carter (26:35):
let's see.
Here's the thing, listeners likeyou shouldn't have to be you
shouldn't have to fight thathard. Exactly. You just
shouldn't. And that's not,that's not, you know, we're
already vulnerable. And like yousaid, you were, you weren't
feeling good from all thestress. And you know, just
having to take care of it. Andyou know, we all know that
(26:58):
caregivers compromise their ownhealth when they're caregiving.
It's just, it just part of theof the of the job, right? It
happens, and we have to reallytake care of our own health.
Otherwise we can. We can getsicker than the people we're
taking care of. And so, youknow, it, it, it shouldn't have
(27:19):
to that pressure shouldn't be,you know, have to be put upon
us. And you happen to be, as wesaid, fierce and fearless. Many
people aren't, and many peoplealso, when someone walks in with
a with a white, you know, scrubon or, or, you know, because
(27:40):
nobody wears white coatsanymore, right? But when someone
comes in with a doctor's badgeand or a nurse's badge, many
people just go with the flow andgo, Well, that's what the doctor
said. You know, it's the expert.
They're the expert and, and, youknow, you it should be that way.
You should be able to rely onthat expertise, but as both you
(28:04):
and I know from personalexperience, that is not the case
in many, many, many situations.
So and not everybody has Betsyas their wife or daughter or
sister or mother and so, youknow, we're if it, if we're in,
if it's us, and we don't have aBetsy, we're up shits Creek.
Don Priess (28:30):
You're screwed and and the thing is, so much of
these decisions are not beingmade on a medical basis. They're
maybe made on a financial basis.
Money is driving the decisionsthat are being made. Some of
these people, they're notthey're being told what they
need to tell you. They're noteven making the decision. And
it's a one size fits all modelwhere, basically, you know, if
(28:50):
you're in this category, theydon't look at the individual and
what their individual needs areand situations and making
decisions on that. It's like, ifthey fit into this box. That's
the decision that's made, andthat's usually because of the
finances, and so that's, that'swhat we're up against, and
that's what you were up against
Susie Singer Carter (29:10):
totally.
And I mean, that's and that is,it's what I'm trying to it's why
I wanted to have Betsy on totalk about this, you know, which
you do in our documentary aswell, because it's just such an
important topic that, you know,the ages of enable ism that
accompanies Alzheimer's and isso prevalent in our in our
(29:30):
society, but but in our healthcare system and and it's really
used to their benefit, you know,to be able to play into those
stereotypes so it whatever suitsthem, like I said earlier that
you wanted more medication, youcouldn't get it. I wanted less
(29:51):
medication and more care interms of of what of the
comorbidities that they hadcaused. Caused, and I couldn't
get that. It was like, no, let'sjust drug her till she can't
you, basically, till she's azombie when she wasn't what,
because they don't want to takecare of her wound and what? What
accompanies those kinds ofwounds, whereas you are. And I
(30:15):
knew my mother well enough toknow that she needed that care,
whether or not she was going todie. She needed that care. Why
would you drug Why would yousteal the last whatever months
of her life, torturing her
Betsy Wurzel (30:34):
Exactly? Why can't there be dignity and make
someone comfortable that that'swhat they, you know, want.
That's why I wanted for Matt. Ididn't want him to suffer. I
want.
Don Priess (30:48):
That's what hospice is for. Yeah, that's what
hospice is supposed to be,
Betsy Wurzel (30:53):
you know, a source of comfort. And the social
worker said to me, oh, Betsy,you fought hard for Matt to come
up here. And I said yes, and Ishouldn't have had to. I
shouldn't have had to fight thathard to be all stressed out and
aggravated. No, and that's whythe holidays is like the worst
time for me, because Matt wasdying from Thanksgiving through
(31:16):
he died New Year's Day 2020, andI knew that when Matt went up to
that hospice, he wasn't cominghome, that hospice was so
incompetent they thought he wasjust going up to get medication
adjustment. That's howincompetent they were, and that
Susie Singer Carter (31:33):
was in the hospital, right? Yeah,
Betsy Wurzel (31:36):
the hospice we had came out from our local
hospital, which is part of ahuge medical health care system
in New Jersey, right? I won'tsay the name, but it's a huge
medical system, right? And theirhospice was absolutely terrible.
(31:57):
Actually, I fired the the aide.
One time they the aid came. Ihad left the room for like 30
seconds, and that was kind ofnext thing I know, he's
screaming. And Josh told me thatthe aide lifted that up abruptly
underneath his armpits. Andthen, of course, he was
(32:18):
agitated. Then she had the nerveto tell me make sure Mr. Sloan
is medicated when I come I saidhe was medicated for your
information, and now I have tomedicate him again, because you
agitated. It.
Susie Singer Carter (32:32):
It's a vicious cycle, because that kind
of, that kind of caregiver thatyou're talking about really
comes again is it's a it's aresult of our of our system,
because it's understaffed andunder trained. And people who
went into this career, you know,vocationally, who had a desire
(32:58):
and a passion for it, are notstaying because they can't do
the job that they want to do,because they're not paid. Well,
they're overworked, and they'rejust abused. They're abused. So
you get these people that aredoing this as a side gig, and
they don't really care, andthey're in it to for their
hours, and then they're gone.
And that doesn't work for peopleyou can't you need consistency
(33:18):
when you're dealing with people,especially who have Alzheimer's,
who's you know, where you knowyou can't just have these aren't
these aren't widgets. This isn'tlike you're washing the car.
This is your your you're takingcare of a human being. And all
of us are uniquely different.
And you know, one person mightnot you know, mind being handled
(33:43):
a certain way, and anotherperson will, but that's what
consistency of care can candeals with, and that's where
that's so important when itcomes to, you know, keep keeping
the right kind of staff. And ifwe, if we continue to allow this
(34:04):
business model that is profitover people and is extracting,
you know, as much profit as theycan from the system, we will
continue to get the minimum carefor ourselves and for our loved
ones,
Don Priess (34:23):
we'll be right back.
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Betsy Wurzel (35:24):
I filed formal complaints with the New Jersey
State Health Department and withMedicare's quality insurance
department.
Susie Singer Carter (35:34):
What happened? What happened? Did you
get any responses?
Betsy Wurzel (35:39):
I did get a response that they didn't see
any violations. There was no substandard of care. And I said,
Are you kidding me? Someonefalls twice, and nobody comes
out. And that's not sub standardcare.
Susie Singer Cart (35:54):
Unbelievable.
It's not unbelievable, though. Isay unbelievable, but it's not
unbelievable because you're you.
I hear this. I've heard thiswith so many people that I've
interviewed. You know, for thedocumentary, on our podcast,
it's, it's the complaints fallon death, death ear, death. That
deaf ears. There's, there yougo. Freudian slip on deaf ears
(36:17):
because there isn't enough.
Again, there's just not enoughmotivation or incentive to make
do anything about it, you know.
So, so it's basically, it's gothrough the motions. It's, it's,
it's all performative. Andthat's why things really need to
(36:40):
change fundamentally, becausethe oversight stinks, the
enforcement stinks, and youknow, the regulations, which
are, there are, are justperformative. They really don't
mean anything. They're theypacify, they mollify, you know,
the public. So the publicthinks, well, there are,
(37:00):
there's, there's regulations,and, you know, there's, there's
staffing regulations that thereare, but nobody's adhering to
them.
Betsy Wurzel (37:09):
That's very, very true. Even the hospice doctor
said, you know, his hands aretied, and they had to follow
strict protocol for someone justto come up to the hospice unit,
and even if they do follow theprotocol of Medicare thinks they
made a mistake, Medicare willtake away their payment, right?
(37:33):
And it's really sad, and it'sreally sad that people think
that they could treat someonewho is mentally disabled or has
any kind of dementia, any waythey want, and it's okay. Well,
it's not okay when it's my lovedone, because I'm a mama bear,
(37:53):
and they saw that I actually hadpeople coming into the room.
They pretended to see how Mattwas doing. They really want to
see who the big mouth was.
Susie Singer Carter (38:04):
You're lucky. I mean, I am. I have a
different tactic. You know, Iwas never I always was. I tried
to not upset the apple cart toomuch, because I knew I could
feel the retaliation, and Icould feel them like, I mean,
it's not even feeling it wasobvious. I mean, I'd walk into
the facility and I got juststink eye from everybody, and I
(38:29):
didn't yell ever. I was like, sorespectful, but I didn't I was
relentless, but I was respectfuland kind, and I still got
retaliation from, you know, thefrom the administration, and I
got a lot of lip service, and Igot a lot of gas lighting. So it
(38:53):
doesn't, it doesn't surprise me,you know, I mean, I got locked
out of the room for God's sakesthey, I got to the point where
they were like, you're notallowed in the room when they
were changing my mom and I waslike, What do you because
Don Priess (39:06):
they didn't want you to see the bed sore. Yeah, they
didn't, yeah, they didn't. Like,what
Susie Singer Carter (39:10):
do you mean? I'm her conservator
person. I am her legal, youknow, Guardian, yep, well, you
have to go out of the room bythey would literally, like,
forced me out of the room, and Iit was like, I had to, you know,
choose my battles, as it were.
But God, we shouldn't have to gothrough this. So what do you
(39:32):
think? The answer is,
Betsy Wurzel (39:37):
you know, I think it's better. I should be better
training, better education, andI really hope that hospices
globally will start to changetheir idea of what terminally
agitated looks like with someonewho has younger onset
(39:58):
Alzheimer's not. Everyone'sgoing to fit that picture of
someone dying in a bed. Theycould be walking around and
dying, and they need to startrealizing this. They probably
will, in about five or 10 years,say, oh, you know, people with
young onset have differentsymptoms. When they're
(40:18):
terminally agitated. They needmore funding, they need more
education, they need morestaffing. And staffing has
always been a problem. Inhospitals, I could tell you
that. And nursing homes, it'salways been a problem, right?
And I can testify to thatbecause I worked in them, and I
(40:40):
saw what went on, and it'sterrible. Better, I think better
education, better, much higherstaffing.
Susie Singer Carter (40:52):
And I think too for listeners, is that, you
know, it is that bias against,there's a there's a fear that
comes in, a bias aboutAlzheimer's and dementia, and
people are repulsed sometimes,or so frightened that they can't
(41:14):
look at it and it and so It'sit's like, that's why so many
people with that disease arehidden away and and, and people
have somehow accepted it, thatit's okay, and, and, you know,
(41:35):
convince themselves that thatbecause of this Disease, they're
not really feeling it. They'renot really experiencing pain or
sadness or loneliness or any ofthe the human things that make
up a human being, so and and soI think that also I'm on my
(41:55):
soapbox right now, but I thinkthat also a lot of a lot of this
responsibility relies on thepublic to say we care. We give
it. We give a shit about peoplewho, even though they may be
dying in a year or two, will soMay. So might you. So might all
of us. We don't know what'sgoing to happen to us. So life
(42:17):
is precious when you have it,and everybody deserves the care
and and respect and dignity likeyou said to to to get what they
deserve, which is, you know, ifyou paid into Medicare and
Medicaid your whole life, youdeserve that money to go to your
(42:39):
care and how you want to Use it.
No one's telling you how tospend your Social Security.
That's your money, right?
Betsy Wurzel (42:46):
That's right, that's right. I think doctors
and nurses need to listen. Andif I could give any advice, I
would say, you know, educateyourself, hire someone if you
could afford it. To help younavigate hospice, plan ahead.
Start looking into hospice. Inormally put it all off until I
(43:13):
couldn't anymore, because I wasat the end of my rope, but I
didn't know about doulas weren'treally a big thing five years
ago, four and a half years ago,true.
Susie Singer Carter (43:26):
That's great advice. That's great
advice because I did the same asyou and I think that we, you
know, we, we do that for a lotof reasons, right and and for
personal reasons, and for ourown fear and our own, you know,
denial. Sometimes I'm speakingfor myself, but you know, I was,
(43:50):
I didn't want to anyone to godown that road, yet, I didn't
think my mom needed it. But Ithink it's better to be
prepared, like you said, andand, and know what you're what
you're getting into beforeyou're in in a crisis situation
where you have to make rashdecisions and you can't make an
intelligent decision unless youunless you've done your
(44:12):
homework, Right exactly?
Betsy Wurzel (44:15):
I'm thankful that right after Matt was diagnosed,
you know he did a living will.
So I know that. You know, hedidn't want a feeding tube. He
wanted, you know, comfort here,and that's what I you know,
that's what he had. Matt hadlost so much weight his last
year of life. The doctor,neurologist said, Oh, well, Matt
(44:38):
could have the feeding tube. AndI went, why? Why would I want to
prolong his agony? Right? No, Isaid, No, he's not going to have
a feeding tube. And I reallythink that everyone should treat
people with respect and dignity.
(45:00):
No matter what they have and whothey are, we're all human
beings. And that's the thingthat is so missing sometimes
from medical personnel, istreating people with respect and
dignity, and I've seen it when Iworked in the state institution.
(45:27):
I talked to the clients, andthey would say, Betsy, who are
you talking to? I startedtalking to the clients. Don't
you know they can't talk,because I know they can't talk,
but they can hear, and they'rehuman, and they want, like
people, talk to them, theysmile, they laugh,
Don Priess (45:45):
and they can tell you're they can feel you're
there. Just the fact that you'rethere is makes a huge
difference. They understandintent, they understand caring,
and they certainly understandnot caring. They, you know,
they'll, I watched, you know,Susie's mom, depending on the on
the nurse that came in, how shewould react just physically to
(46:09):
this either positive or negativepresence that came into the
room, yeah, and, and I thinkthat, you know, a lot of that
comes with, you know, educationwithin, you know, it's not only
educating ourselves that,hopefully, that the medical
field educates people that thisisn't they're not widgets. They
are not they are human beings.
And so many, there's so manylovely nurses and doctors who
(46:31):
really do care. And thedifference is amazing. But
there's so many where theyliterally, I watched Susie's mom
being handled. And we actuallyhave some of it on video, and
it's in the documentary as ifshe was a piece of furniture.
Yeah, and my mom's vacation,yeah,
Susie Singer Carter (46:50):
my mom's crying out in pain. I'm going,
she's, you're hurting her.
You're hurting her. She's like,I Okay. I mean, like,
Don Priess (46:58):
or nothing or no.
Response, yeah. And, and so, sois there anything that you feel
that you would have donedifferently along your path? I
mean, you don't want with noregrets. Just saying, now that I
know what I know, is theresomething that you thought you
could have handled differently?
Betsy Wurzel (47:17):
Yeah, what I would have done was, ahead of time,
look at different hospices,
Don Priess (47:24):
education, yeah, yeah, yeah, but you don't even
know that that's an option.
Susie didn't even know thatthere was an option for another
hospice, or she could quithospice. She didn't know any of
that.
Susie Singer Carter (47:36):
But that's why we're doing this doc, this
document, and when doing thisepisode is like, I want people
to know you have a choice.
You're not stuck with the withthat hospice, there's other
hospices. If you don't likewhat's going on, you need to
speak up. You know your personbetter than anyone else. If
someone tells you something andit and you get that pang of
like, Hmm, you know, listen toit. You're you know better. They
(47:59):
don't know better. They theyknow, you know, medical things
that that are like by the book,that's it. But when it comes to
common sense, you know, I mean,I, I, we have, we have to wrap
up. But I just want to say, likemy, I had a friend, a
girlfriend, whose mom was in thesame facility as my mom. And
(48:20):
before my mom passed away, hermom did not have dementia, and
she told me she would, they'reputting her mom in hospice. And
I said, Oh, I'm so sorry. Youknow what? Why? And she said, I
don't know. She's they just saidshe's, you know it, she's ready
for hospice. And she had, shehad came from out of state to be
(48:42):
with her mom, and she said tome, we had coffee. She said, My
mom was saying to me, am I dyingbecause I because she didn't she
could talk. She was like, Am Idying because I'm not ready to
die? And I told my friend, yourmom's not ready to die. She's
telling you, I mean, she doesn'twant to die. She died two days
later because they, because theymedicated her so much. And so
(49:06):
that's the other that's theother end of the spectrum. So
what I'm saying, and I'm tellingyou this because I'm saying,
listen to your loved one, ifthey can talk, listen to your
intuition, if they can, yes,
Betsy Wurzel (49:24):
yeah, definitely follow your gut instinct, which
I have always done. That's how Iknew that Matt was dying, right?
I just knew it, but they didn'tbelieve me, and that's the thing
that they need to listen andrespect the family members. And
(49:48):
just want to tell the audience,you know, there's a lot of good
hospices out there, a lot ofnurses and doctors out there.
I'm not knocking them. There's alot of great people in
profession, just like anythingelse, there's also. The bad
apples, and definitely do yourhomework ahead of time. It was a
little I knew I could changehospices, but it was really too
(50:10):
late for Matt, for me to changeand this was local. And then I
know that some hospices Medicaredoesn't approve of and so they
have you over the barrel. Youhave to go where they're going
to pay. She can afford out ofpocket, right?
Susie Singer Carter (50:32):
And I want to reiterate too that thank you
for sharing your story. Betsy, Iwant to reiterate that there are
good hospices. There are greatpeople, as I said before, but,
you know, the system is isgeared towards making it very
difficult for those good peopleto do their jobs the way they
want to. And and the people thatare and the and the hospices
(50:56):
that are, you know, family runor non profit, many of them are
doing the best job they canwithin the system as it is. So
we need to make it easier onthem, easier on the good on on
the frontline providers thatwant to do a good job and that,
you know, and so that they arenot feeling this moral injury,
(51:20):
which is really destructive. Andmany, I mean, many doctors, many
nurses, are dying of suicidethan ever before. So, and
they're, they're very, veryconflicted, and it's just a
vicious cycle. So again, it allcomes down to the system, and
(51:43):
but in the meantime, everythingthat Betsy said and that we
talked about, I hope, will behelpful to everyone listening. I
love you, Betsy. We love havingyou here. Thank you so much. And
you know, our podcast is allabout love, right?
Don Priess (52:01):
It's all about love, and that's because love is
powerful, love is contagious,and love conquers all we thank
Betsy for being with us today.
If you like what you saw orheard today, then please like it
and then share it and subscribeand do all those fun things. And
yeah, we will hopefully see younext time on Love conquers
(52:22):
halls. Everyone. Have a greatday
Susie Singer Carter (52:25):
care. Bye, thank
Betsy Wurzel (52:26):
you. Bye, bye.
You.
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