Transcript of Susie Singer Carter: Exposing America's Nursing Home Crisis, Alzheimer's Care, and the Fight for Long-Term Care Reform

Tony Mantor: Why Not Me ?
51:46 35 views Published 23 days ago
00:00:00

Your body is always giving you signals. Whoop helps you understand them. Whoop is the wearable health and fitness coach that provides personalized insights into your sleep, recovery, strain, and overall health to help you make better decisions every day. Whether you're training, working, traveling, or just trying to feel your best, Whoop shows you what helps your performance and what might be holding you back. Listen to your body. Build better habits. See where Whoop can take you. Try Whoop free for 30 days at whoop.com.

00:00:30

Lisa, tell them about our We have a new show.

00:00:33

We have a new podcast. It's called Don't Lie to Me.

00:00:35

I'm Lexi Ioannou. We're 2 best friends, 22 years apart, but so close at heart.

00:00:41

And I'm Lisa DiGiulio, the old one, which means we have wildly different references, occasionally different opinions. And at this point in my 50s, I've lived it all.

00:00:49

Now in my 30s, being the founder of New Shoes, good taste is my business.

00:00:54

Listen on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:01:01

Hi, this is Kylie Brakeman.

00:01:03

Angela Giarratana.

00:01:04

Jeremy Culhane.

00:01:04

Patrick McDonald.

00:01:05

And we're the hosts of the Artists on Artists on Artists on Artists podcast.

00:01:09

The improvised character comedy podcast where each week a new panel of artists discuss their craft.

00:01:15

Join us for a panel of Eurovision participants.

00:01:18

And we do a little Halloween sometimes.

00:01:20

Does the Pope dress up?

00:01:22

He, he winks on Halloween.

00:01:24

He gets right up next to the microphone. You can—

00:01:26

I hear you can almost hear the eyelashes hit each other.

00:01:29

You never seen Italy's so quiet as when the Pope gets up to wink on Halloween.

00:01:34

Listen to Artists on Artists on Artists on Artists every Thursday on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:01:42

I'm Lacey Mosley, author, actor, stand-up comedian, creator, and host of Scam Goddess Podcast, the true crime comedy podcast all about robbery, fraud, and those who practice it. Each week I bring on an amazing guest.

00:01:54

Ooh, I scammed them.

00:01:55

What?

00:01:55

I could talk to you for an hour.

00:01:57

You're a generational yapper like me. That's why I had to make yapping a job. And now you can catch Full episodes of my show on YouTube. Start listening to Scam Goddess on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:02:10

Scam Goddess.

00:02:12

So like by age 11 or so, at least 70% have a phone.

00:02:16

I'm Dr. Joy, and this is Therapy for Black Girls. We spent our surviving middle school run getting into what's happening inside your kid's brain, the group chats and their friendships, and what you can do about it.

00:02:27

Your child is not doing this on purpose.

00:02:29

That's the kind of perspective we've been pulling from the psychologists and psychiatrists who study this for a living. Listen to Therapy for Black Girls on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:02:41

Self-Care September is your reminder to slow down, check in with yourself, get off your phone, and maybe ask, why am I like this? I'm Jemma Speck, host of the Psychology of Your 20s podcast. And this month, we're helping you make sense of the person that you are becoming, from setting boundaries and navigating friendships to understanding anxiety, Sometimes our biggest decisions, without us even realizing it, aren't driven by what we truly want, but by what will prevent us from feeling lonely or being alone. Listen to The Psychology of Your 20s on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:03:23

Welcome to Decoding Women's Health. I'm Dr. Elizabeth Pointer, Chair of Women's Health and Gynecology at the Atria Health Institute in New York City. I'll be talking to top researchers and clinicians and bringing vital information about midlife women's health directly to you.

00:03:38

100% of women go through menopause. Even if it's natural, why should we suffer through it?

00:03:44

Listen to Decoding Women's Health with Dr. Elizabeth Pointer on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:03:53

What if everything you thought you knew about autism and mental health wasn't the full story? Today's conversation might change the way you see it. Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide, where real conversations and lived experiences inspire understanding and hope. I'm Tony Mantour. This is where understanding begins. If this kind of conversation matters to you, then follow the show so you don't miss what comes next. Today, I'm honored to welcome an extraordinary storyteller, also a filmmaker, actress, and passionate advocate. Suzy Singer Carter has built an impressive career in Hollywood, but in recent years, she has dedicated her voice to something deeply personal: raising awareness about Alzheimer's disease, supporting family caregivers, and exposing the challenges facing our nation's nursing homes. Inspired by her own family's journey, Suzy has become a leading advocate for dignity, accountability, and better care for older adults. Through her award-winning documentary, No Country for Old People: A Nursing Home Exposé, her acclaimed film, My Mom and the Girl, she is helping families navigate some of life's most difficult moments while working to create meaningful change. Today we'll talk about caregiving, Alzheimer's, nursing home reform, and how one person's story can inspire a movement that gives hope to millions of families.

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Thanks for joining us today.

00:05:25

Well, thank you. I appreciate you having me on again.

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Okay, so let's start this off for listeners who haven't seen your documentary yet. Can you tell us what inspired you to make it and then why it became so important to you?

00:05:37

Sure. So in 2022, my darling mom, who was a force and, you know, you are a musician, so you'll understand, she started out as an incredible singer. My family is all music background. And so my dad was very instrumental in the music industry. And anyway, she was in a— she had to go into a nursing home, and she was in a 5-star nursing home. And I was so happy about that because I thought, oh, I got her into a place— because I didn't want her to be, obviously, in a place. But you get to— when you have Alzheimer's, and she had it for a very long time, she had it for 16 years.

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Sure.

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You can spend all of your, you know, nest egg that you have And now you are on Medicare and Medicaid, or Medi-Cal in our case in California, and you have to go into a facility because you are now progressed in your disease. So my mom was in a place that I thought was wonderful. And then in 2022, which was, you know, right in the heart of COVID still.

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Right.

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And we were just being able to see our loved ones. My mom was sent to the hospital with a stage 4 bedsore, which I didn't even know what that actually meant.

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Sure.

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most people do unless you've heard of it or seen it because it's affected your life.

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Right.

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A bedsore is what they call a pressure wound. And they have— they go from stage 1 to stage 4. And a stage 4 goes sadly egregiously to the bone. Not only is it painful, it is scary to see. And it is the hallmark of neglect.

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Right.

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They are considered a never event in our Centers for Medicare and Medicaid in the regulations. But it happens every day. across the country.

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Sure.

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I didn't know that. When they go untreated, you begin to get comorbidities so that it brings on sepsis, it brings on pneumonia, it begins to affect your organ function. My mom had, you know, 10% kidney function.

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Yeah.

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Along with sepsis and, and pneumonia, dehydration, you name it. That began the beginning of the end for my mom. 6 months of, you know, fighting a system that was not taking care of her.

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From this, that led you to creating a documentary.

00:07:52

Mm-hmm.

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Can you give us a little bit of background on how you started with that documentary, then how it developed through time?

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Sure. So I have a podcast called Love Conquers ALZ, A-L-Z, about Alzheimer's. And that came out of a short film that was Oscar qualified that was about a day in the life of my mom with Alzheimer's. But I called it A Joyous Look at Alzheimer's. Through that, I met a lot of people. And while my mom was going through this journey with the nursing home, I had just finished watching a miniseries called Dopesick on Hulu. So if your audience has watched that, it was very, very lauded. It was Emmy Award-winning, and it was really following these 2 prosecutors who were going after Purdue Pharma, who are the manufacturers of OxyContin, created the OxyContin crisis. It was starring Michael Keaton, and Peter Sarsgaard plays the lead prosecutor Rick Montcastle. In their final episode, they talk about their next case, and that was against another pharmaceutical called Abbott Labs, who were off-marketing a drug called Depakote, which is a drug for epilepsy, anti-seizure drug, to basically chemically restrain residents in nursing homes so that they don't have to attend to them.

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Yeah.

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Happened to my mom.

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Okay.

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So I reached out to the actual real prosecutor to come on my show, Rick Montcastle, to talk about chemical restraining. And then I found out by the end of it, that he had also prosecuted nursing homes for over 20 years federally, and that he hadn't seen a change in over 2 decades, and that this kind of systemic crisis has been going on for 50 years or more.

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Right.

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And he said, this is what you're up against. This isn't just your mom's facility. This is a systemic crisis. And I said, what can we do? And he said, that is a very big question.

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Sure.

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And he explained the business model behind it, the lobby, the powerful lobby that, you know, pays millions and millions of dollars to keep everything status quo. clothes so that people who are making a profit off of this business can continue to make the profit, and it's profit over people. So when my mom passed away 6 months later, I would continue talking to Rick, and, and I said, you know, I can't unsee what I saw, right? I feel like if I don't share this story, then somehow I'm complicit, right? Because I know what's going on, and I didn't know before, so there must be other people just like me that don't know.

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Yeah.

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So, and Rick said, I happen to be retiring this year as a federal prosecutor, and I would like to help you with this documentary. So the odd couple of this federal prosecutor and this blonde-haired filmmaker who produced and wrote Bratz the movie and, you know, Soul Surfer— here we are going into heavy-duty exposé, right? Based on story though, because I knew we had to tell a story.

00:10:45

Absolutely.

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And my mom's story along with other people's stories of their loved ones.

00:10:50

Yeah.

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And then experts. So it was basically what happens, how does it happen, why does it happen, and now how do we fix it?

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You completed it, got it out there, and then it started winning a few awards and getting some recognition, right?

00:11:03

Mm-hmm. We became a 3-part docuseries. We had a lot to say. So it was going to be a film. It turned into a docuseries on Amazon Prime. and Tubi. From that, I started thinking about this, and I talked about— I talked— I wrote about this in my Substack, which is the ethics of storytelling. Because here I just told the story, right, that is not having a good ending for anybody right now, and this needs to change, right? What are my ethics? Do I put that information out there and then go, bye, I'm gonna go do a sitcom now, right? Or do I use all the resources and the people that I've met in doing this to say we need to make a change.

00:11:43

Yeah.

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Right?

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I get it.

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We decided that's what we needed to do. I've never done a nonprofit. I've never, you know, started a movement.

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Right.

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But I have faith, you know, in that the power of the collective and in people.

00:11:58

Right.

00:11:58

Is what it takes to make real change. I mean, we see it with Mothers Against Drunk Drivers, you know.

00:12:04

Right.

00:12:04

Your body is always giving you signals. Whoop helps you understand them. Whoop is the wearable health and fitness coach that provides personalized insights into your sleep, recovery, strain, and overall health to help you make better decisions every day. Whether you're training, working, traveling, or just trying to feel your best, Whoop shows you what helps your performance and what might be holding you back. Listen to your body. Build better habits. See where Whoop can take you. Try Whoop free for 30 days at whoop.com.

00:12:35

Lisa, we should tell them about our new show.

00:12:38

Oh my God. Lexi, we have a new podcast. It's called Don't Lie to Me.

00:12:42

I'm Lexi Iwanu. We're 2 best friends, 22 years apart but so close at heart.

00:12:48

And I'm Lisa DiGiulio, the old one, which means we have wildly different references, occasionally different opinions. And at this point in my 50s, I've lived it all.

00:12:56

I'm not gonna get anywhere fighting.

00:12:59

That is wild. I learned that about you today.

00:13:04

Now in my 30s, Being the founder of New Shoes, good taste is my business, and I've always got something to say. If men were just honest about this, there would be so much more peace in the world.

00:13:15

We're gonna talk about dating, relationships, beauty, getting older and a little wiser. We're best friends, but we don't always agree. Because you told us how accommodating you are.

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Obviously I would do what I think I could do to, to fight the fight, but there's only so much fight I can fight.

00:13:30

Don't lie to me. Don't lie to me. Don't lie to me.

00:13:34

Don't lie to me.

00:13:35

Don't lie to me.

00:13:36

Don't lie to me.

00:13:37

Liar.

00:13:37

Listen on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. I don't really care.

00:13:45

Hi, this is Kylie Brakeman, Angela Giarratana, Jeremy Culhane, Patrick McDonald, and we're the hosts of the Artist on Artist on Artist on Artist podcast.

00:13:53

The improvised character comedy podcast where each week a new panel of artists discuss their craft.

00:13:58

Join us for a panel of wellness influencers.

00:14:01

What I try to do is faux journal. I don't know, have you guys heard of faux journaling?

00:14:06

Yeah, it's reading. It's called reading.

00:14:08

So you're— so we don't like to use that word anymore.

00:14:10

Okay.

00:14:11

A panel of New Yorker cartoonists.

00:14:13

Have you guys done Terry Gross's Peloton class?

00:14:16

No!

00:14:16

I've been dying to.

00:14:18

I'm so sorry. I'm seeing a reading of Sadako and the Thousand Paper Cranes by Audra McDonald at the Wonderland Bookstore on the 14th.

00:14:26

That's crazy.

00:14:27

I went to the Wonderland Bookstore yesterday and I heard Norah Jones do a reading.

00:14:30

No way!

00:14:30

You have to go to the last bookstore though.

00:14:34

Kim Cattrall is reading the guitar tabs of Yesterday.

00:14:39

A panel of Eurovision participants.

00:14:41

And we do a little Halloween sometimes.

00:14:44

Does the Pope dress up?

00:14:45

He, he winks on Halloween.

00:14:47

He gets right up next to the microphone.

00:14:49

You can—

00:14:49

I hear you can almost hear the eyelashes hit each other.

00:14:52

You never seen Italy so quiet as when the Pope gets up to wink on Halloween.

00:14:57

Listen to Artist on Artist on Artist on Artist on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:15:04

I'm Lacey Mosley, author, actor, stand-up comedian, creator, and host of Scam Goddess Podcast, the true crime comedy podcast all about robbery, fraud, and those who practice it. Each week I bring on incredible guests like Conan O'Brien, Iowa Debris, Lamorne Morris, and Nicole Byer.

00:15:21

Ooh, I scammed them.

00:15:22

What?

00:15:22

I could talk to you for an hour.

00:15:24

You're a generational yapper like me. That's why I had to make yapping a job. And the scams Scams run the gamut. I'm talking about scams from the 1800s all the way up to today. I also warn you and keep you safe against scammers. Call your grandparents. Tell your parents to stop clicking on links, please. And now you can catch full episodes of my show on YouTube. If there's a scam, I'm here to protect you. And I'm also here to laugh with you. So if you like fun, if you like comedy, and you like learning and protecting yourself from criminals, Start listening to Scam Goddess on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:16:04

By age 11 or so, at least 70% have a phone.

00:16:08

Middle school is a different world than the one we grew up in. I'm Dr. Joy, and this is Therapy for Black Girls. We spent real time on it in our Surviving Middle School run, bringing in a child psychologist and a psychiatrist who's raising 2 Black girls of his to talk about what's really going on with our kids right now.

00:16:25

So it's literally physiological and neurological and psychological chaos happening all at the same time.

00:16:31

We got into group chats and gaming, friendships and bullying, and how to tell the difference between healthy monitoring and the kind of surveillance that erodes trust.

00:16:40

There's belonging. You could think of belonging as, I can be myself and I can still be accepted. And then there's fitting in. Fitting in says, I have to change who I am in order to avoid rejection.

00:16:52

Then we turned the conversation toward the fun. Sitting down with therapist Kier Gaines on Black fatherhood and what it means to raise a daughter through this stage.

00:17:00

You don't have on shorts, so you can't do flips. You have on a dress, so you have to cross your legs.

00:17:04

That's the range of this run, from screen time to identity to the fathers doing the work at home.

00:17:09

You have to get off her device, but the reality is there's a lot of life out there that we don't want you as your adults in their life to miss out on.

00:17:17

This has been our Surviving Middle School run. Brought to you by the people who spend their careers thinking about exactly this. I'm Dr. Joy. Listen to Therapy for Black Girls on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:17:32

Self-Care September is here, which means it's time to rethink what self-care actually means. Yes, self-care can be a long walk, it can be an everything shower, it can be putting your phone on do not disturb, but sometimes it's actually about sitting with the uncomfortable stuff. And understanding your patterns, your boundaries, finally figuring out why you keep doing things that you swore you would never do again. I'm Gemma Spagg, the host of the Psychology of Your 20s podcast, and each week we unpack the psychology behind the experiences that shape your 20s, from relationships and friendships to money, anxiety, confidence, attachment, just becoming more comfortable with who you are. Unlike the quarter-life crisis, which is depicted as the collapse, the Quarter-life reinvention is the expansion and growth of something. When we develop the ability to be happy by ourselves, nobody else can take that from you. So this Self-Care September, don't just take care of yourself, get to know yourself as well. Listen to The Psychology of Your 20s on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:18:32

Every case has a story. Every victim has a voice. But will it be heard? I'm Nancy Grace. On Crime Stories, we go beyond headlines to examine evidence, challenge the story we're fed, and pursue justice for victims and their families. Please join us at Crime Stories with Nancy Grace on the iHeartRadio app, Apple Podcasts, or wherever you find your podcasts. Hope you join us. I'll see you there, friend.

00:19:03

Right.

00:19:03

MeToo movement, on and on and on. Let's talk about women's votes and all those things that all took human beings to push it. It's a powerful thing. I read a book, in case anybody's interested, by Cory Booker, Senator Cory Booker, called Stand.

00:19:17

Okay.

00:19:17

He reiterates so many stories of grassroots movements that have made— that have changed the trajectory of our history in our country.

00:19:25

Right.

00:19:26

One of the lovely quotes that was in his book is that the power of the people is greater than the people in power.

00:19:33

Yeah. Yeah. Now, you've got this all done. Part of that movie is your mother's journey. That's the heart of the documentary. What was the hardest part What was the hardest part for you as a daughter doing this film and as an advocate doing this film?

00:19:48

Yeah. So as a daughter, I hit the ground running when my mom passed. I say that my mom taught me— I told her the night before she passed that she taught me how to live and then she taught me how to die.

00:20:01

Yeah.

00:20:02

Because nobody wants to die. And my mom did it with the best dignity that she could. She did it when she decided. And I said, Mommy, you lasted You fought like tooth and nail. And I watched her do it. And I watched her do it, you know, on her own timeline. So I hit the ground running. I didn't even get a chance to mourn her. Honestly, I haven't mourned her yet because I've been living with her.

00:20:24

Sure.

00:20:24

Throughout telling this story the entire time.

00:20:27

Right.

00:20:27

Part of it is very difficult.

00:20:29

Sure.

00:20:30

Looking at the video and seeing her suffer. Part of it is so hard that I can't look at it.

00:20:35

Right.

00:20:36

And I don't know how I had the strength to do it during the time. I was convinced that I had to do this documentary. I was convinced that I have to share what goes on because it goes on every day right now while we're talking, you know?

00:20:52

Yeah.

00:20:52

And I know that now because I have a community across this country that send me stories and talk to me and tell me that they had the same thing happen or it's happening now.

00:21:03

Right.

00:21:03

It hasn't changed. So those kinds of conversations put wind in my sail. Listen, I'm a big old crybaby and a big— I'm very empathetic and my heart hurts all the time because I'm talking to people who are hurting.

00:21:17

Sure.

00:21:18

And, you know, I know you talk about mental health on your show and it's, you know, I talk to people who have been through this journey with long-term care with a loved one who have PTSD. Like, they are so damaged by what they've been through that it is Heartbreaking, you know. And so when I say that somehow I am able to channel maybe all the pain—

00:21:43

Yeah.

00:21:43

Watching my mom suffer when they wouldn't let her have anything to drink for 6 months or eat.

00:21:49

Right.

00:21:50

Let me tell you, this woman lived to eat. Okay. And who doesn't? Right. And I mean, I was like, this is so cruel. Like, what are you doing? You know, it's heartbreaking when I watch those videos back where she's like a little bird.

00:22:01

Yeah.

00:22:02

Yeah.

00:22:03

It breaks my heart. It's literally heartbreaking. And I know that there's so many other people out there the same, exact same.

00:22:11

Right.

00:22:11

That buoys me and it puts wind in my sail and I keep going from that. Maybe I don't want to stop because if I stop, I'll really say, okay, let me take assessment of what's actually happened to me personally.

00:22:26

Yeah.

00:22:27

I'm not ready to do that yet because I feel like my strength, whatever I have right now, is given to me somehow through this through whatever, you know, you believe in.

00:22:36

If a person was to only have time to watch one scene from your documentary, which one would that be?

00:22:43

Oh, gosh. That, that is— that's too hard. That's too hard because you must see the journey because—

00:22:50

Right.

00:22:51

You need to humanize. I humanize my mom so you know who she is.

00:22:55

Right.

00:22:56

You know, this pistol of a woman.

00:22:57

Yeah.

00:22:58

You know, could own a room even with Alzheimer's. She had more game than I've ever had in my life. And I think if you remember the beginning where I I'm telling her the story of her life and I'm going, I said, everyone loved Norma, women and men, mostly men. And she goes, she knew it. She knows it. You know, that's my mom. I wanted to humanize her so people knew these aren't gray lumps in a bed. These aren't just old people. Well, they've had their time because I used to go into my mom and say to Mommy, Mommy, how you doing today? And she would say to me, I am great. I'm alive. Life is good. And the alternative sucks. You know?

00:23:33

Yeah.

00:23:34

And that's true. People want to live.

00:23:37

For everyone that's listening now, I want them to know that you came on to my Almost Live Nashville as an entertainer telling about this documentary. So if they want to hear that part of it, they can go research and refine that. Now let's jump back to everything that you've done. You've brought this awareness. People across the country are reaching out to you. They're telling you their stories. They're telling you the things they've gone through or are going through now. Has that overlapped with some of the facilities out there that may have seen it? And how have they reacted to you in this documentary?

00:24:17

In a lot of ways. And I don't know what to trust and what to believe. I mean, a lot of nursing home facilities have reached out to me and said, you know, we watched your documentary and I was really going to hate it. I was sure I was going to hate it. But I think that you did a really good job. And I'm not sure if that was, you know, Divisive by saying that because they had another message for me. And the message was, how come you're not concentrating on the good ones out there? And my answer to them is, well, that would be called a commercial.

00:24:45

Yeah.

00:24:45

Because, you know, so you need to pay an advertising agency for that.

00:24:49

Right.

00:24:50

I am shining the light where the darkness is, and there's a lot of darkness out there. If you are indeed a good facility, then you should be, you should be, you know, regaling and telling people about your place because you are the outlier. You are not the norm.

00:25:05

Right.

00:25:06

So yes, of course, are there some good nursing homes and rehabilitation centers? Of course. They are not the majority.

00:25:13

Right.

00:25:14

The majority are not good. And so chances of you knowing which is what are very slim to none because, you know, 5 stars are paid for, the oversight sucks, and the enforcement does, and there's no transparency, and on and on and on in these places. And they are made to make money.

00:25:31

Yeah.

00:25:32

At the end of the day, they're warehousing people that we love. And that's why I started ROAR.

00:25:37

You know, many families struggle with guilt when they have to place a loved one in a nursing home. What would you say to someone facing that difficult decision today? How would you tell them to approach it so they don't wind up in the same situation that you had?

00:25:52

Right. So watch the documentary because that will give you the whole business of the business. It will give you, you know, people— my experts will tell you things to avoid, things to look for. Like when you walk into a facility that you're thinking about and the lobby looks great and it's beautiful and there's cookies there and there's flowers and everything, and you think, this looks great, like, Mom's gonna love it here. That's what's called buying the lobby, right? You're not buying the lobby. You're buying the people that work there. You're buying the room that your loved one's going to be in. Look behind those doors. Ask for a tour. Talk to other residents. Talk to their families. Talk to the people that work there. How do they feel?

00:26:33

Sure.

00:26:34

Are they overworked because it's understaffed? Because most of them are. You know, so that's the kind of due diligence that you need to do. Don't let them tell you, oh, we're going to love your parents. She's going to love it here. He's going to love it here. We have such a great time. It's wonderful. Yada, yada, yada.

00:26:51

Right.

00:26:51

Of course you want to believe that. Of course you do. Who? Nobody. Unless you have a bad relationship with your loved one, do we want to put them in a place like that? But the truth is, is that often you can't feel guilty about it. If there's no other solution, if someone is in need of 24/7 care.

00:27:11

Right.

00:27:11

Most of us can't handle that at home.

00:27:13

Yeah.

00:27:14

And our healthcare system is not set up to support that financially at home.

00:27:19

Yes. Right.

00:27:20

We may not have a big enough place. We may not have the finances. Chances are we don't. And, you know, our insurance as it stands now does not cover what most people need at home.

00:27:32

Right.

00:27:33

So if you can age in place, that is obviously the best.

00:27:37

Right.

00:27:37

But many people can't. And so you can't feel guilty about it because this is the system that we have.

00:27:42

Yes.

00:27:43

So until we change the system, which I hope to do with our ROAR movement—

00:27:47

that's my next question.

00:27:48

Your body is always giving you signals. Whoop helps you understand them. Whoop is the wearable health and fitness coach that provides personalized insights into your sleep, recovery, strain, and overall health to help you make better decisions every day. Whether you're training, working, traveling, or just trying to feel your best, Whoop shows you what helps your performance and what might be holding you back. Listen to your body. Build better habits. See where Whoop can take you. Try Whoop free for 30 days at whoop.com.

00:28:19

Lisa, we should tell them about our new show.

00:28:22

Oh my God, Lexi, We have a new podcast. It's called Don't Lie to Me.

00:28:26

I'm Lexi Ioannou. We're 2 best friends, 22 years apart, but so close at heart.

00:28:32

And I'm Lisa DiGiulio, the old one, which means we have wildly different references, occasionally different opinions. And at this point in my 50s, I've lived it all.

00:28:40

I'm not gonna get anywhere fighting.

00:28:43

That is wild. I learned that about you today.

00:28:48

Now in my 30s, Being the founder of New Shoes, good taste is my business, and I've always got something to say. If men were just honest about this, there would be so much more peace in the world.

00:28:59

We're going to talk about dating, relationships, beauty, getting older and a little wiser. We're best friends, but we don't always agree. Because you told us how accommodating you are.

00:29:09

Obviously I would do what I think I could do to, to fight the fight, but there's only so much fight I can fight.

00:29:14

Don't let Don't lie to me. Don't lie to me. Don't lie to me.

00:29:18

Don't lie to me.

00:29:19

Don't lie to me.

00:29:20

Don't lie to me.

00:29:21

Liar.

00:29:21

Listen on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. I don't really care.

00:29:28

I'm Lacey Mosley, author, actor, stand-up comedian, creator, and host of Scam Goddess Podcast, the true crime comedy podcast all about robbery, fraud, and those who practice it. Each week I bring on incredible guests Like Conan O'Brien, Iowa Debris, Lamorne Morris, and Nicole Byer.

00:29:45

Ooh, I scammed them.

00:29:46

What?

00:29:47

I could talk to you for an hour.

00:29:48

You're a generational yapper like me. That's why I had to make yapping a job. And the scams run the gamut. I'm talking about scams from the 1800s all the way up to today. I also warn you and keep you safe against scammers. Call your grandparents, tell your parents to stop clicking on links, Please. And now you can catch full episodes of my show on YouTube. If there's a scam, I'm here to protect you. And I'm also here to laugh with you. So if you like fun, if you like comedy, and you like learning and protecting yourself from criminals, start listening to Scam Goddess on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:30:26

Scam Goddess.

00:30:29

Hi, this is Kylie Brakeman.

00:30:30

Angela Giarratana.

00:30:31

Jeremy Culhane.

00:30:32

Patrick McDonald.

00:30:33

And we're the hosts of the Artists on Artists on Artists on Artists Podcast.

00:30:37

The improvised character comedy podcast where each week a new panel of artists discuss their craft.

00:30:43

Join us for a panel of wellness influencers.

00:30:46

What I try to do is faux journal. I don't know, have you guys heard of faux journaling?

00:30:50

Yeah, it's reading. It's called reading.

00:30:52

So you're— so we don't like to use that word anymore.

00:30:55

Okay.

00:30:55

A panel of New Yorker cartoonists.

00:30:57

Have you guys done Terry Gross's Peloton class?

00:31:00

No! I've been dying to!

00:31:03

I'm so sorry. I'm seeing a reading A reading of Sadako and the Thousand Paper Cranes by Audra McDonald at the Wonderland Bookstore on the 14th.

00:31:10

That's crazy! I went to the Wonderland Bookstore yesterday and I heard Norah Jones do a reading of Zero Dark Thirty.

00:31:15

No way!

00:31:16

You have to come to the Last Bookstore though. Kim Cattrall is reading the guitar tabs of Yesterday.

00:31:23

A panel of Eurovision participants.

00:31:26

And we do a little Halloween sometimes.

00:31:28

Does the Pope dress up?

00:31:29

He, he winks on Halloween.

00:31:32

next to the microphone.

00:31:33

You can— I hear you can almost hear the eyelashes hit each other.

00:31:36

You never seen Italy so quiet as when the Pope gets up to wink on Halloween.

00:31:42

Listen to Artist on Artist on Artist on Artist on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:31:48

By age 11 or so, at least 70% have a phone.

00:31:52

Middle school is a different world than the one we grew up in. I'm Dr. Joy, and this is Therapy for Black Girls. We spent real time on it in our Surviving Middle School run, Bringing in a child psychologist and a psychiatrist who's raising 2 Black girls of his own to talk about what's really going on with our kids right now.

00:32:09

So it's literally physiological and neurological and psychological chaos happening all at the same time.

00:32:15

We got into group chats and gaming, friendships and bullying, and how to tell the difference between healthy monitoring and the kind of surveillance that erodes trust.

00:32:24

There's belonging. You could think of belonging as, I can be myself and I can still be accepted. And then there's fitting in. Fitting in says I have to change who I am in order to avoid rejection.

00:32:36

Then we turn the conversation toward the fathers, sitting down with therapist Kier Gaines on Black fatherhood and what it means to raise a daughter through this stage.

00:32:44

You don't have on shorts, so you can't do flips. You have on a dress, so you have to cross your legs.

00:32:48

That's the range of this run, from screen time to identity to the fathers doing the work at home.

00:32:53

You have to get off her device, but the reality is there's a lot of life out there that we don't want you as your adults in their life to miss out on.

00:33:01

This has been our surviving middle school run, brought to you by the people who spend their careers thinking about exactly this. I'm Dr. Joy. Listen to Therapy for Black Girls on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:33:16

Self-Care September is here, which means it's time to rethink what self-care actually means. Yes, self-care can be a long walk, it can be an everything shower, it can be putting your on do not disturb, but sometimes it's actually about sitting with the uncomfortable stuff and understanding your patterns, your boundaries, finally figuring out why you keep doing things that you swore you would never do again. I'm Gemma Spigg, the host of the Psychology of Your 20s podcast, and each week we unpack the psychology behind the experiences that shape your 20s, from relationships and friendships to money, anxiety, confidence, attachment, just becoming more Unlike the quarter-life crisis, which is depicted as the collapse, the quarter-life reinvention is the expansion and growth of something. When we develop the ability to be happy by ourselves, nobody else can take that from you. So this Self-Care September, don't just take care of yourself, get to know yourself as well. Listen to The Psychology of Your 20s on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:34:16

Every case has a story. Every victim has a voice. But will it be heard? I'm Nancy Grace. On Crime Stories, we go beyond headlines to examine evidence, challenge the story we're fed, and pursue justice for victims and their families. Please join us at Crime Stories with Nancy Grace on the iHeartRadio app, Apple Podcasts, or wherever you find your podcasts. Hope you join us.

00:34:45

I'll see you there Friday.

00:34:46

Thank you.

00:34:46

Yeah, yeah, yeah. But don't beat yourself up.

00:34:50

Yeah.

00:34:50

Because life is hard and we all, by the grace of God, go— all of us— to have the need of that kind of help and care.

00:35:00

Yeah.

00:35:00

The way it's set up, that is the way it's set up.

00:35:02

Yeah. I'm glad you brought that up because that was exactly my next question that was going to lead to. Your advocacy didn't stop when the filming stopped. You went on to create a 501. What inspired you to take that next step? Because that's a huge step.

00:35:17

It's a huge step for someone who's never done it before. You know, listen, I've walked for Alzheimer's Association and I've been an emcee, you know, honored to be asked to do that when my mom died. But I've never ever organized a 501 and knew anything about it. But Rick and I, Rick Moncastle, my partner, and I said to ourselves that we needed to do something. How can we do this so that it's national so that we have the credibility and the, and infrastructure to promote change the way we think that it needs to be promoted. I said, how about if we start just a foundation? And he said, how about we go big, not mom and pop? Because that's Rick, right? And I said, all right, all right, I'm in, I'm in. If you're there with me, I'm in. And so we did. We filed for a nonprofit status. It supposedly is a 9-month process. We were approved within 6 months, so that was good, at the end of last year.

00:36:10

Nice.

00:36:11

This was the reasoning for ROAR. Let me just tell you the name of it. It's ROAR.

00:36:15

Mm-hmm.

00:36:15

It stands for Respect, Oversight, Advocacy, and Reform for Long-Term Care. And I thought— I saw through, by doing the documentary, that traditional advocacy hasn't worked for 50 years. And although a tremendous amount of incredible work and passionate and dedicated work for decades has gone into it, at the end of the day, we have a lobby that works against all of these regulations. Even if they pass a bill, say, for minimum staffing, like in California, we have minimum staffing regulations. They're not enforced.

00:36:47

Right.

00:36:48

There's no oversight. And the penalty is the cost of doing business. So how do we change it? If the public doesn't know this is going on, they don't know it's a problem.

00:36:58

Yes.

00:36:59

We felt like we needed to be the megaphone.

00:37:03

Okay.

00:37:04

For all these organizations that have already been advocating but haven't really moved the needle where it needs to go.

00:37:10

Yeah.

00:37:10

Yeah, we need— I really believe that, that it is, again, going back to the power of the people. That is what we need. We need people to understand it's a hard topic to get people to want to listen to.

00:37:22

It is.

00:37:23

Getting old, nursing homes, blah, yuck, right? Yucky.

00:37:28

That's right.

00:37:29

It's yucky. So I'm trying to say it may be yucky, but it's yuckier when it happens to you.

00:37:36

Yeah.

00:37:36

Or someone you love.

00:37:37

Yeah.

00:37:38

It's way yuckier. We want to change it now because it's just going to get passed down to you.

00:37:43

Yeah.

00:37:44

Your children and their children and so on and so on and so on. The way that our administration is now, who knows what's going to happen with our Medicare and Medi-Cal? We— it's going to— we don't know. We don't know.

00:37:56

Right.

00:37:57

And there's cuts being done all over the place. We have elder people and, you know, vulnerable disabled people on the streets now.

00:38:06

Yeah.

00:38:06

Who are being dumped.

00:38:09

Well, this is a tough subject. There's no doubt about it. That's one thing that I've never been afraid to tackle on this podcast is a tough subject. With that said, what do you see for the future? You've talked about the past. Last 50 years have been horrible as far as getting any change. Now you started your roar. You're trying to get out there and get people involved.

00:38:28

Yes.

00:38:28

Do you feel hopeful that some change can happen in the future coming from all of this?

00:38:34

I do. I really do. I, because I, I know So, you know, we were so fortunate. We had Jane Fonda endorse our documentary. And I've gotten the opportunity to see her speak in person and thank her and her talk about her advocacy at 88 years old.

00:38:49

Right.

00:38:49

You know, and she's advocating for the Climate Pact and also for democracy, to save democracy right now. And she's fierce. And she says, you know, people, artists, all of us who have a platform are standing at the front lines of change. It's the only way change has ever really been made when it comes to, you're up against corporate money and lobbies. So it does make change. So I do have hope because I see how the other hasn't worked. And I'm saying with the— once we can make everyone aware, and that's what this walk that we're having on September 27th is about, it's really about to tell the public, Okay. this is what's happening in our elder care and our disabled community. our most vulnerable community are being warehoused. And that's not, you know, I'm not being like an extremist here. I mean, this is what's going on. And I want people to understand so that what is our currency like? What do we have for leverage against millions and millions of dollars from lobbyists? Well, we have our constituency, right? And that is powerful. And we— so we have our voices and our constituency and we can decide who we vote in and who we don't vote in.

00:40:07

Right.

00:40:07

Right.

00:40:07

Those are very important decisions and they parlay into financial decisions for other people.

00:40:14

Right.

00:40:14

Who may be concerned with that. Right. And so that is the kind of things that, you know, we need to shame our politicians.

00:40:22

Right.

00:40:22

And that's okay. We're not asking for people to protest. We're just saying we know what's going on.

00:40:27

Right.

00:40:28

We don't want it to go on another 50 years.

00:40:30

Yeah.

00:40:30

And the solutions are there. When people say, what's the solutions? The solutions have been there for 50 years. We have, you know, the 1987 Reform Act that has— it is so well written. No one's adhering to it.

00:40:43

Right.

00:40:44

All they have to do is CMS, do your job.

00:40:47

Right.

00:40:47

And do your oversight. And there won't be people suffering and being tortured.

00:40:51

Yeah. Tell us about the walk that's coming up. Give us a little information about that.

00:40:55

Okay. So this is the very first national walk for long-term care reform. It's really a peaceful walk for awareness. And we are right now in 25 states.

00:41:04

Nice.

00:41:04

It is on a brand new day that we have established. Officially established on September 27th, which is the National Long-Term Care Reform Day. This year it's going to be on a Sunday. You can go to our roar4ltc.org website, find out if there's going to be a walk in your state. If there isn't, you can volunteer to create one and organize one. I'm telling you, it's not hard. We have everything ready for you, packages to say, here's how you do it. So many of the people that are organizing right now have never organized a walk. Many of them have. We are a family now. We are helping each other. We will get the word out.

00:41:42

Yeah.

00:41:42

Any size walk matters. If you are living in Tennessee, like I have a walk leader in Tennessee in a very little town there. She just moved there. I told her if she gets 15 people, that's a win.

00:41:55

Yeah.

00:41:56

Because it speaks to the fact that this is not just in Los Angeles or San Francisco or, you know, Chicago. This is everywhere. Everyone's affected by it.

00:42:07

Right.

00:42:07

And she is caring for her dad right now. She is not having an easy time. These are people that know it. They've been in it or they're in it right now. We have 25 more states, and I really want to get all of them, because if we can be represented in every state—

00:42:22

Yeah.

00:42:23

That is a statement to our policymakers. That is a statement to our politicians when it's midterms. So, we have some leverage. It's midterms coming up. So, now is the time to take a stand for your future and for the future of your children and your parents or yourself. And yeah, so join us. Please join us. I need everybody.

00:42:46

Tell the listeners again where they can find you, where they can contact you, where they can interact, all the information they need to be part of this.

00:42:57

Absolutely. I'm happy to do that. And I just want to add one thing before I do that is that if you can't organize a walk, and I understand that, there's other ways to help out. You can join the walk. You can be a volunteer. We need people to make signs. We need people to reach out to sponsors who can get us, who will donate t-shirts and signage and banners and waters and all the things that we need for walk. So there's all ways that you don't even have to leave your house that you can help us out.

00:43:28

Yeah.

00:43:28

You can find me, Susie Singer Carter, on every platform on social media. I try to answer every message I get. And so if you want to reach out to me that way, do. You can also go to our website, which is roar4ltc.org, and you can sign up for either our newsletter, to be a volunteer, to walk, or find out where the walks are in your state or your community already, and you can join those walks too. You know, just help by spreading the word, telling other people that, hey, I heard this girl on this cool podcast, you know?

00:44:08

Yeah.

00:44:09

She was talking about this and we really need to, we really need to make a change. If you don't have children, what are you gonna do? Like, you people say to me, I watched your documentary. I don't have children. Like, who's gonna take care of me? Nobody.

00:44:22

Right.

00:44:22

That's right.

00:44:23

And you have to take care of yourself.

00:44:25

Yeah.

00:44:25

And even if you have children, do you want that on them? It's not fair.

00:44:29

Right.

00:44:29

And so please be kind and gentle with yourselves and just know that, you know, if you've gone through this with your family, you are not to blame because this industry is— was set up like this.

00:44:41

So with everything that you've experienced, you know, the heartbreak of your mother, creating the documentary, you've heard thousands of stories from families across the country.

00:44:50

Mm-hmm.

00:44:51

You've now dedicated yourself to advocacy. Now you've got a chance to stand in front of people on my podcast and tell people one message that could change the way they think, act, or advocate. What would you want them to hear?

00:45:07

That you have agency. That even when you think you don't have agency in a situation where you know that you're feeling something's wrong, Know that. Don't dismiss it. That is your superpower. We all have it. When we walk into something and you go, something doesn't feel right, this doesn't feel right, but people are looking at you and saying, no, you're wrong. No, everything's good. Everything's good. But your eyes are telling you something else. You have to believe that. And you have to also believe that you have agency in any situation, even before we change this this system, that you have the power to somehow, some way. And if you're in a situation right now, reach out to me and let me know. I will try to direct you to someone who can help you. In the meantime, before we change this whole horrible thing, there are ways to navigate it that I didn't know about.

00:46:03

Right.

00:46:03

We shouldn't have to have that responsibility of having to navigate it. It should already be a lovely place that takes care of people in a, in a humane way.

00:46:13

Right.

00:46:13

So just remember that we do have agency. And when it feels like, oh my God, this is so overwhelming and such a big issue, what am I gonna do? How can I contribute?

00:46:22

Yeah.

00:46:23

Everybody's voice matters, right? I mean, Tony, you know that it's a ripple, right?

00:46:28

Yeah.

00:46:29

Every voice matters.

00:46:30

That's right.

00:46:31

And it is, it is powerful. I mean, there's an energy to that. I'll end with one more thing that I truly believe this, that the one power that is underestimated is love.

00:46:41

Yeah.

00:46:41

And that is so important and so powerful. And, you know, even Einstein said it on his deathbed. It's like he said, you know, that I forgot about love. And it's the one power that can move mountains.

00:46:54

Yeah.

00:46:54

Can move armies. It can move people. It can, you know, it can change lives. And he said, and it's the only power that no one can harness or pay for.

00:47:04

Right.

00:47:05

Yeah, that's great.

00:47:05

Well, this has been It's been really good, informative. You got the word out there, which I think is very important. It's been great to have you here.

00:47:14

It's great to be here. You're a lovely, lovely human being. Thank you, Tony. I really appreciate it. It means a lot. So thank you.

00:47:20

It's been my pleasure. Thanks again. A sincere thank you to our guests for sharing their journey with us today. We appreciate their honesty, courage, and willingness to open their hearts in hopes of helping others. If today's conversation helped you see the world a little differently, then we've accomplished exactly what we set out to do. Until next time, keep believing, keep learning, and most importantly, keep asking yourself, why not me?

00:47:53

Your body is always giving you signals. Whoop helps you understand them. Whoop is the wearable health and fitness coach that provides personalized insights into your sleep, recovery, strain, and overall health to help you make better decisions every day. Whether you're training, working, traveling, or just trying to feel your best, Whoop shows you what helps your performance and what might be holding you back. Listen to your body. Build better habits. See where Whoop can take you. Try Whoop free for 30 days at whoop.com.

00:48:23

Lisa, tell them about our new show.

00:48:26

We have a new podcast. It's called Don't Lie to Me.

00:48:29

I'm Lexi Ioannou. We're 2 best friends, 22 years apart but so close at heart.

00:48:34

And I'm Lisa DiGiulio, the old one, which means we have wildly different references, occasionally different opinions. And at this point in my 50s, I've lived it all.

00:48:43

Now in my 30s, being the founder of New Shoes, good taste is my business.

00:48:48

Listen on the Hi, this is Kylie Brakeman.

00:48:56

Angela Giarratana.

00:48:57

Jeremy Colhane.

00:48:58

Patrick McDonald.

00:48:59

And we're the hosts of the Artists on Artists on Artists on Artists podcast.

00:49:03

The improvised character comedy podcast where each week a new panel of artists discuss their craft.

00:49:08

Join us for a panel of Eurovision participants.

00:49:11

And we do a little Halloween sometimes. Does the Pope dress up?

00:49:13

I do.

00:49:14

Does the Pope dress up? I do.

00:49:15

He, he winks on Halloween.

00:49:17

He gets right up next to the microphone.

00:49:19

You can—

00:49:19

I hear you can almost hear the eyelashes hit each other.

00:49:22

You never seen Italy so quiet as when the Pope gets up to wink on Halloween.

00:49:27

Listen to Artists on Artists on Artists on Artists every Thursday on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:49:35

I'm Lacey Mosley, author, actor, stand-up comedian, creator, and host of Scam Goddess Podcast. The true crime comedy podcast all about robbery, fraud, and those who practice it. Each week I bring on an amazing guest.

00:49:47

Ooh, I scammed them.

00:49:48

What?

00:49:49

I could talk to you for an hour.

00:49:50

You're a generational yapper like me. That's why I had to make yapping a job. And now you can catch full episodes of my show on YouTube. Start listening to Scam Goddess on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:50:03

The Scam Goddess.

00:50:05

So, like, by age 11 or so, at least 70% have a phone.

00:50:10

I'm Dr. Joy. And this is Therapy for Black Girls. We've spent our surviving middle school run getting into what's happening inside your kid's brain, their group chats, and their friendships, and what you can do about it.

00:50:20

Your child is not doing this on purpose.

00:50:23

That's the kind of perspective we've been pulling from the psychologists and psychiatrists who study this for a living. Listen to Therapy for Black Girls on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:50:34

Self-Care September is your reminder to slow down, check in with yourself, get off your phone, and maybe ask Why am I like this? I'm Jemma Speight, host of the Psychology of Your 20s podcast, and this month we're helping you make sense of the person that you are becoming, from setting boundaries and navigating friendships to understanding anxiety, confidence, relationships, and attachment. Sometimes our biggest decisions, without us even realizing it, aren't driven by what we truly want, but by what will prevent us from feeling lonely or being alone. Listen to The Psychology of Your 20s on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

00:51:16

Welcome to Decoding Women's Health. I'm Dr. Elizabeth Pointer, Chair of Women's Health and Gynecology at the Adria Health Institute in New York City. I'll be talking to top researchers and clinicians and bringing vital information about midlife women's health directly to you.

00:51:32

100% of women go through menopause. Even if it's natural, why should we suffer through it?

00:51:38

Listen to Decoding Women's Health with Dr. Elizabeth Pointer on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

Episode description

Show Notes What happens when a personal tragedy becomes a national movement for change? Award-winning filmmaker, actress, and advocate Susie Singer Carter joins Tony Mantor to share the heartbreaking story that inspired her acclaimed documentary exposing America's nursing home system. After watching her mother suffer from preventable neglect while living with Alzheimer's disease, Susie turned grief into action. In this powerful conversation, Susie discusses the realities facing millions of families navigating Alzheimer's, dementia, caregiving, long-term care, and nursing homes. She explains why neglect continues despite decades of reform efforts and why she believes meaningful change is finally possible. Susie also introduces ROAR (Respect, Oversight, Advocacy, and Reform for Long-Term Care), the nonprofit organization she founded to advocate for better care, greater transparency, and accountability throughout America's long-term care system. Whether you're currently caring for a loved one, planning for the future, or simply want to understand one of the most overlooked healthcare issues in America, this conversation offers valuable insight, hope, and practical advice. In this episode: • Susie's mother's 16-year Alzheimer's journey • The shocking reality inside America's nursing homes • Recognizing neglect and preventable injuries • What every family should know before choosing a facility • Why staffing shortages continue • The business side of long-term care • Caregiver guilt and emotional trauma • Creating the documentary that is changing lives • Launching the ROAR movement • The National Long-Term Care Reform Walk • Why advocacy and awareness matter • Finding hope through community and action If this episode touched you, please follow the show, leave a review, and share it with someone who may benefit from hearing this important conversation. 25See omnystudio.com/listener for privacy information.