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 ?

In this episode, filmmaker and advocate Susie Singer Carter shares the harrowing story of her mother's Alzheimer's journey and the medical n

Key takeaways

• Susie Singer Carter's mother suffered a stage four pressure wound, which is a hallmark of medical neglect.
• The use of drugs like Depakote for 'chemical restraint' in nursing homes is a documented systemic issue.

Main topics

• Alzheimer's disease care
• Nursing home neglect and reform

Notable quotes

I am shining the light where the darkness is.

Conclusion

The episode serves as a powerful call to action for families to use th

Transcript preview

Speaker 6 (0:00) Lisa, tell them about our new show. We have a new podcast. It's called Don't Lie to Me. I'm Lexi Iwano. We're two best friends, 22 years apart, but so close at heart. 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. Now in my 30s, being the founder of New Shoes, good taste is my business. Listen on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 6 (0:31) Hi, this is Kylie Brakeman, Angela Geratana, Speaker 7 (0:34) Jeremy Colhane, Patrick McDonald, and Speaker 6 (0:35) we're the hosts of the Artists on Artists on Artists on Artists podcast, the Speaker 7 (0:39) improvised character comedy podcast, where each week a new panel of artists discuss their craft. Speaker 8 (0:45) Join us for a panel of Eurovision participants. And Speaker 6 (0:48) we do a little Halloween sometimes. Does the Pope dress up? He winks on Halloween. Speaker 8 (0:53) He gets right up next to the microphone. Speaker 6 (0:55) I hear you can almost hear the eyelashes hit each other. Speaker 8 (0:59) You've never seen Italy so quiet as when the Pope gets up to wink on Halloween. Speaker 6 (1:04) Listen to Artists on Artists on Artists on Artists every Thursday on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 3 (1:11) 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. Speaker 8 (1:23) Ooh, I scammed him. What? I could talk to you for an hour. Speaker 3 (1:27) 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. Speaker 1 (1:41) 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 Gemma Spegg, 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. Speaker 3 (2:23) So like by age 11 or so, at least 70 % have a phone. Speaker 5 (2:27) I'm Dr. Joy, and this is Therapy for Black Girls. We spend 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. Speaker 8 (2:38) Your child is not doing this on purpose. Speaker 5 (2:41) 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. Speaker 5 (2:52) The Speaker 7 (2:53) new NFL season is here and you should be listening to NFL Daily as we march along to Super Bowl 61. It is in the name NFL Daily. You'll have fresh content in your feed every day, all season long. That game winning drive. Maybe it's Herbert. Maybe it's Gino. Maybe it's Mahomes. We'll have the highlights. If Fernando Mendoza or any of the rookies are balling out, we'll break down the tape. Join me, Greg Rosenthal, and an all-star cast of co-hosts as we preview and recap every game. Listen to NFL Daily. on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. I'm Brett Coleman. And I'm Trevor Sykema. If you love Speaker 8 (3:30) football and want to understand what's really happening on the field, check out our show, NFL Pro. Every week, we break down the biggest plays, trends, and matchups using exclusive next-gen stats insights and NFL content you will not find anywhere else. Speaker 7 (3:43) Whether you're new to football, a fantasy football fanatic, or a diehard fan, NFL Pro will help you analyze the game like a pro. Listen to NFL Pro on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Speaker 4 (3:58) 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 Mantor. 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. Susie 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, Susie 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 expose, 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. Thanks for joining us today. Speaker 2 (5:30) Well, thank you. I appreciate you having me on again. Speaker 4 (5:33) 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. Speaker 2 (5:43) 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 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 five star nursing home. And I was so happy about that because I thought, oh, I got her into a place because I did. Speaker 7 (6:12) You Speaker 2 (6:12) don't want her to be obviously in a place, but you get when you have Alzheimer's and she had it for a very long time. She had it for 16 years. Sure. Speaker 7 (6:20) You Speaker 2 (6:21) can spend all of your, you know, nest egg that you have. And now you are on Medicare and Medicaid or Medi-Cal. 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. Right. And we were just being able to see our loved ones. My mom was. sent to the hospital with a stage four bed sore, which I didn't even know what that actually meant. Sure. Nothing most people do unless you've heard of it or seen it because it's affected your life. Right. A bed sore is what they call a pressure wound. And they have, they go from stage one to stage four and a stage four goes sadly, egregiously to the bone. Not only is it painful, it is scary to see. And it is the hallmark of neglect. Speaker 4 (7:17) Right. Speaker 2 (7:18) They are considered a never event in our Centers for Medicare and Medicaid, in the regulations, but it happens every day across the country. 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, a lot more sepsis and pneumonia, dehydration, you name it. That began the beginning of the end for my mom, six months of, you know, fighting a system that was not taking care of her. From Speaker 4 (7:55) this, that led you to creating a documentary. Speaker 2 (7:58) Can Speaker 4 (7:59) you give us a little bit? of background on how you started with that documentary than how it developed through time. Speaker 2 (8:06) Sure. So I have a podcast called Love Conquers Alls, ALZ, 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 Dope Sick on Hulu. So if your audiences watched that, it was very, very lauded. It was Emmy award winning. And it was really following these two prosecutors who were going after the 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 Moncastle. 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. Speaker 4 (9:11) Yeah. Speaker 2 (9:11) Happened to my mom. Speaker 4 (9:12) Okay. So Speaker 2 (9:13) I reached out to the actual real prosecutor to come on my show, Rick Moncastle, 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 two decades and that this kind of systemic crisis has been going on for 50 years or more. Right. 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. Speaker 6 (9:44) And Speaker 2 (9:45) 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 so that people who are making a profit off of this business can continue to make the profit and its profit over people. So when my mom passed away six months later, I would continue talking to Rick and I said, you know, I can't unsee what I saw. Right. Speaker 4 (10:08) I Speaker 2 (10:08) 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. Speaker 4 (10:20) Yeah. Speaker 2 (10:21) So 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 expose. Right. Based on story, though, because I knew we had to tell a story. Speaker 4 (10:51) Absolutely. Speaker 2 (10:52) And my mom's story, along with other people's stories of their loved ones. Yeah. And then experts. So it was basically what happens? How does it happen? Why does it happen? And now how do we fix it? You Speaker 4 (11:03) completed it, got it out there, and then it started winning a few awards and getting some recognition, right? Speaker 2 (11:09) Mm-hmm. We became a three-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. Mm Speaker 4 (11:19) -hmm. Speaker 2 (11:20) From that, I started thinking about this and I wrote about this in my sub stack, which is the ethics of storytelling. Because here I just told the story that is not having a good ending for anybody right now. And this needs to change. Speaker 4 (11:35) Right. Speaker 2 (11:35) What are my ethics? Do I put that information out there and then go, bye, I'm going to 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. Yeah. Right? I Speaker 4 (11:51) get it. Speaker 2 (11:51) We decided that's what we needed to do. I've never done a nonprofit. I've never, you know, started a movement. Right. But I have faith, you know, in that the power of the collective and in people. Speaker 4 (12:03) Right. Speaker 2 (12:04) Is what it takes to make real change. I mean, we see it with Mothers Against Drunk Drivers, you know. Right. Lisa, we Speaker 6 (12:12) should tell them about our new show. Oh my God, Lexi, we have a new podcast. It's called Don't Lie to Me. I'm Lexi Iwano. We're two best friends, 22 years apart, but so close at heart. And I'm Lisi 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. I'm not going to get anywhere fighting. That is wild. I learned that about you today. 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. 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. Obviously, I would do what I think I could do to fight the fight. But there's only so much fight I can fight. Don't lie to me. Don't lie to me. Don't lie to me. Don't lie to me. Don't lie to me. Don't lie to me. Liar. Listen on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. I don't really care. Speaker 6 (13:20) Hi, this is Kylie Brakeman. Angela Geratana. Speaker 7 (13:23) Jeremy Colhane. Patrick McDonald. And Speaker 6 (13:25) we're the hosts of the Artists on Artists on Artists on Artists podcast. The Speaker 7 (13:28) improvised character comedy podcast where each week a new panel of artists discuss their craft. Join us Speaker 8 (13:34) for a panel of wellness influencers. What Speaker 7 (13:37) I try to do is faux journal. I don't know. Have you guys heard of faux journaling? Yeah, it's reading. It's called reading. So we don't like to use that word anymore. Okay. Speaker 8 (13:46) A panel of New Yorker cartoonists. Speaker 7 (13:49) Have you guys done Terry Gross' Peloton class Speaker 8 (13:51) yet? No! Speaker 6