A Filmmaker, A Family Caregiver. Susie Singer's Story

Welcome And Guest Tease

SPEAKER_01 0:00

Hey parted up family. You guessed it. Once again, we have knocked it out of the park, and we have what I'm gonna call a global badass. She is a badass. She didn't tell me to call her that, but I did. I decided it because she does all things in front of and behind the camera. She actually has, it really is world renowned. You know, people throw that thing around, but no country for old people is her documentary, and it came from a point of pain. Yes, a caregiver who is an actor and a producer and an activist. So, you know, we had to make her an absolute star guest right here on the Parenting Up Podcast.

Supporter Shout-Out And Community Ask

SPEAKER_01 1:42

Today's supporters shout out comes from YouTube, Cassandra Wheeler 362. Needed this, all caps! Thank you, Emoji Heart. You know what? Our pleasure, Cassandra Wheeler 362. That she made that comment in reference to the episode where I give some of my personal favorite self-care caregiver tips. If you all liked it, throw something in the DMs to let me know which caregiver tip really resonated with you, or if there's something that you do that I didn't mention. Can't wait to hear about it. Now, if you would like to be the recipient of a supporter shout out, you know what to do. Leave a review on Apple Podcast or a comment on YouTube. We're parenting up everywhere.

Meet Susie Singer

SPEAKER_01 2:36

Today's episode of Filmmaker of Family Caregiver, Susie Singer's Story. Hey Susie, how you doing?

SPEAKER_00 2:44

Oh, I'm doing great, and I'm so happy to be here. I can't we I love it. I love it so much. I like love your energy and I love what you're doing, and so I feel very um honored to be here.

SPEAKER_01 2:55

Yay! I want to go on the record, audio and video, as saying, Susie is an example of everything that's right with LA and Hollywood. Now, whatever, whatever that means to you, that's what that means to me. Because there are some people who are associated with film and producing or television. Anyway, let's just say the recording of something to share a story. There are a lot of storytellers, and whether they live in LA or not, many times we attribute whatever's happening in the entertainment world to Los Angeles. And we know a lot of them aren't doing it right. This chick is doing it right. So let's get right into

Becoming A Caregiver Overnight

SPEAKER_01 3:43

it. Why do you care so much about caregiving?

SPEAKER_00 3:51

Yeah, like you do. When you finally get to that point where you are a caregiver, but you don't even know that that's the name. You didn't even know it, right? And so you're just suddenly just being the daughter who's, you know, helping her mom out who was diagnosed with Alzheimer's. And lo and behold, you're like taking on more and more and more of things you have no idea what you're doing. You're just diving in, making a ton of mistakes. And I just loved my mom so much. And I wanted her, whatever this trip was gonna be, let's make it the freaking best trip it's going to be. Because from the day one when she was diagnosed with Alzheimer's, and she had it for 16 years, you guys. I said to her, Mom, we got this. Other people aren't doing a good job, but we're gonna do a good job. We're gonna get rid of this thing and it's gonna be gone. So just hang loose. And then a year later, I was like, oh my God, this is not happening. My delusions of grandeur are gone, and I am I am defeated, god damn it. I'm defeated, and so I thought, well, you know, and I did every mistake in the book, you know. I was testing my mom, mommy, what day is it? Mommy, what you know, do you do you know who I am? And all the things that you shouldn't do. And I learned by rote, because I my mom had it for 16 years. So when I started this journey, we're talking 20 years ago, because my mom passed four years ago. So there wasn't a lot of podcasts. I don't think there was any when I first started. There wasn't a lot of resource. I mean, I'd go to the, you know, the gerontologist, my mom, and they'd give you a pamphlet on, you know, organizations that you could maybe, you know, hook up with. And and I I I got involved with the Alzheimer's Association, you know, did my walk, raised money, more like purple, like you. But um, not not a lot of help, and also a lot of stigma and a lot of misunderstandings. So I wanted, I decided to lean into my mom. That was my big epiphany. If I lean into her instead of trying to keep her where I was, we'd have a better, a better time. And we did. We did.

SPEAKER_01 6:09

That's okay.

SPEAKER_00 6:10

So there's so much that you learn though by road. If you are patient and and if you care, and I'm not saying everybody has a great relationship with their fam, you know, some someone in their family, and and that's that adds a whole nother layer of stress. And and I get it, we talk about it on my podcast as well, you know. And so, but I think for me, it was let's figure out how to do this because God knows we don't know how long it's gonna last, and why shouldn't she enjoy the time that she's here? Life is precious.

SPEAKER_01 6:43

Absolutely, I love that. I love that. You said so much. I want to uh I want to talk about next. I was like, wait a minute, is this when my brain, the menopause brain is a problem? I'm like, wait, did you did you calculate and bullet point all of these delicious points that Susie is making? Thank you for that so much, and for your transparency in saying, hey, first thing was I was delusional for about a year. Guess who else was delusional? Thumbs on me, your girl. I was like, screw these people. I'm going, everybody who said it was a death sentence, they kind of use that word. And I was like, uh, no, it's not. I'm going to find the cure. You all don't know where it is, but maybe there's a moon rock somewhere, or there's a snake in the Amazon that if it bites your pinky toe, then you won't have all sides. And I spent probably about a good year, and then it was demoralizing to find out that there's really no cure. And at that time, like you, you know, I'm I'm talking more than 15 years ago now, there was no podcast, that, you know, the pamphlets. Anyway, I don't want to repeat it, but all I'm gonna say is absolutely, I was right there with you. I want to step back a little bit so that uh the parenting of community listeners, some of them are very, some of our community, they're very new,

Early Alzheimer’s Signs At Home

SPEAKER_01 8:09

right? I call them caregiver newbies. They're less than a year, and maybe the person that they're close to hasn't received a full diagnosis. And they're like, I think something's wrong, but we're waiting on the doctor. So if you um are comfortable sharing, what symptoms did your mom exhibit to make you or your mom or others say, hey, this is not normal aging?

SPEAKER_00 8:35

I think when you know somebody so well, and you know, it's not like I'm a helicopter daughter. So let's let's just put this into perspective. I was I'm a normal girl. I was going through a divorce at the time when I when she moved in with me, and I'll tell you about that a little bit later. But I have two daughters, and you know, but my mom and I we were just good good friends, and I could tell it started happening way before anyone else saw it because I was like, why is she so agitated? Like she was getting agitated, and if she couldn't remember something, she'd go, Stop, stop, I can't think if I'm addled. And I thought, this is not, I mean, this is the woman who could look at, you know, uh a wheel of fortune and with one letter and go, the queen of France. And you're just like, What? There wasn't even a letter up. What's wrong with you, woman? You know, and so I knew that there was something, and she was getting that just was a switch, a shift in her personality. I could feel it. And I would say to my daughters, Do you see it? No, we don't see it. I think you're you're just too sensitive. All right. And then it was the repetitive, it's just the very similar symptoms that most of us see. But my mom was such a vibrant pistol, force of nature, that if you try to say, Mommy, did you know that you just said that like two seconds ago, she'd go, What? I so what are you crazy? Did you forget? What's going on with you? I don't know. I love to talk about you. I love it. So my mom was feisty, she was feisty. So she used all her feist and to you know, deflect. She was also a singer, so when she got to the stage where she couldn't remember people, and they'd go, Oh, it's so nice to see you again. You remember me? And she'd go, Of course, you are so beautiful. And she starts singing to them, and they'd be like, swoon, you know.

SPEAKER_01 10:25

So the charisma, OMG, I see where you get it from because you just you jump off the camera lens, I should say. And I guess I guess that as they say, the apple doesn't fall far from the tree.

SPEAKER_00 10:36

Oh that is so much like her. Yeah, well, so milley because she was. She would just look at like my mom was five foot tall, maybe, and like you know, like this. And even in a wheelchair, I can tell you she had more game with men than I've ever had, ever, ever. She could just look at a man and pin him and they'd go, hello. He's like, Do you know her? Like, it's my mom. Hello.

SPEAKER_01 11:02

I love that. That has happened with Zetty more times than I cared to count. And at first, you know, every time it happens, my initial instinct is, can't you tell she's infirmed in some way? You know what I mean? Like, dude, what kind of sleaze ball are you trying to hit on to a lady who's clearly doesn't have all her faculties? But now, like 10 seconds later, I'm thinking, hey, what about me? I I am walking and talking. And would you like to hit on me? I mean, I I mean it, I mean, I might not be as great as her, but damn, like you have a better chance and me saying yes.

SPEAKER_00 11:39

Oh my God. I have do I have stories? I have stories. Like I would, I mean, it'll take us three hours, but agreed, agreed, agreed.

SPEAKER_01 11:49

Perhaps we'll just have uh a pop a pop a drink and a an a conversation where we're just spitballing with examples of how much it was obvious that our mom's game was way better than ours, even with the state of dementia. That's that's hilarious.

SPEAKER_00 12:10

Okay, I'm gonna I'm gonna throw it one one uh step further. Okay. When my mom has passed away, we'll get to the documentary that I did. I have men that tell me, your documentary is amazing. And you know what? I wish I knew your mom. I wish I would have met her. And I was like, I'm like, whoa, okay, okay, this is what's going on. Okay. Okay, I'm right here. I know. And she was she would be like, what are you gonna do? What are you gonna do? You know, what I can't help it. That's exactly what Zadie's. Mind your business.

SPEAKER_01 12:45

Zadie will tell me, well, when she was still talking, she would say, Well, JG, I did the best I could. Like, I did the best I could in training you. And sweetheart, you know, if if you wanted to be a spoon in a knife drawer, that's not my fault. That was kind of her perspective.

SPEAKER_00 13:00

So Oh my god, we would love each other. My mom would have absolutely adored her. Oh my god, they would have been fast friends, they would have been gone, bye-bye. We're absolutely you and I'd you guys have a good you have a good life. We're down to here. Because guess what? They're all nuts. That's correct.

SPEAKER_01 13:18

They would have left peace for sure, for

Testing And The MCI Reality

SPEAKER_01 13:20

sure. So, did you know where to go first? Like, okay, you noticed something happening with your mom. Did you know that a neurologist was a good place to start? Or how did what did you do first?

SPEAKER_00 13:33

Well, first of all, can I I'll just try to tell the story really quickly. There was something that was a gift I gave her uh on uh during the holiday time, and it came with this giveaway of these two stuffies, right? That were kissing. Cut to February, and she brings them out to give them as a gift to my daughter, who was a little girl at the time. And and I said, Mommy, I gave you those. And she said, Are you nuts? I got this from Hallmark. And I said, No, mom, those are from Victoria's Secret. You know what? You're driving me crazy. She got really upset about it. So I went up on my computer upstairs and I'm looking and looking, and there it was. It was from they didn't have they had it was some other promo they were doing at Hallmark, whatever. The point was, I knew she was there was off. I that was it. So I said, Mom, I want to take you just to see what's going on. She wasn't happy about it, but I took her to her doctor and they sent her to ger uh to gerontology, not to neurology, and we did that test, the test that everyone does. You know, on the paper? The what day, yeah. First is what day is it? And they my mom goes, You tell me.

SPEAKER_01 14:41

Oh my god, I love her.

SPEAKER_00 14:42

What's your mom's name? Norma.

SPEAKER_01 14:45

Norma, I'm talking to Norma tonight, okay? Okay, I'm going to try to channel some of that feist.

SPEAKER_00 14:51

Oh my god, you have no idea. And so, and then they'd say, and of course they got it, she's they're laughing, right? It was when she went to fill out the clock when he said, Now put the put the hands in at you know 350. And she stood there like this, and my heart dropped in my stomach. Yeah, and she couldn't do it, and that was it. I knew. Yeah. So the doctor told me, took me aside, he goes, She's definitely got mild, mild cognitive impairment, right?

SPEAKER_02 15:22

Okay.

SPEAKER_00 15:22

MCI. And I was like, oh, what does that mean? And so it's on, you know, what I could find out was that it was on its way. This is the start of something. It's either dementia, Alzheimer's, whatever the case might be, but nobody really gives you anything. You know, you're sort of left with this semi-diagnosis, and off we went. And it, I think it exasperated for, you know, significantly, and then it stopped. It stayed in one stage for a very long time. And I thought, well, this is bad. It's not horrible, but it's bad. I mean, you know, she's dipping her fingers and things at the market and things that she would never do, right?

SPEAKER_01 16:06

And you're like, Mom, we didn't, mom, now we have to pay for that. How many dips are you going to make us purchase?

SPEAKER_00 16:12

Right? Or my mom would go, my mom would go, oh my God, look at the behind on that one. My mom, she can hear you. What? I'm just saying the truth. The filter. The filter is gone. Gone is the filter,

A Family Year That Changes You

SPEAKER_00 16:29

right? So cut to uh 10 years down the line, and I just decided I thought, you know, she lived with me for a year when I was going through a divorce, and my stepfather passed, and that was her best friend, and her biggest fear of losing her best friend. She couldn't, she couldn't remember that.

SPEAKER_01 16:46

MCI, maldognitive impairment?

SPEAKER_00 16:48

No, there's a movie that I'm trying to think of. It's a work uh uh, it's like something day. It's um, you know, Sundowners? No, no, no. It's a movie with Round Hog Day. Roundhog Day, thank you. Did okay, so she had uh crazy by the way.

SPEAKER_01 17:05

If you don't, if you don't have anyone with Alzheimer's, it's hilarious.

SPEAKER_00 17:09

Exactly. So she would say, Where's Georgie? And I'd say, Mom. And she go, I'd say he died. She said, What? Nobody told me? And then so I my decision, and this isn't for everybody, but my decision was I knew my mom enough, and I knew had done a lot enough research at that point to know that certain things that are very important will imprint. So when she moved in with me and I had the little memorial pamphlet, and every time she'd asked me, I'd say, Yes, mommy, she died, he died, and I would show, remember, you were there, it was beautiful, you you were funny, you were lovely, everyone, you know. And finally, like it only took two weeks, and she said, Where's George? I said, Mom, and I just looked at her and she said, He died. And I said, Yeah, he died, and that was it. So she lived with me for a year. Um, and I remember my friends, colleagues, everyone, I had just gone through a divorce myself, and my 14-year-old daughter was living with me. And people were saying, Would you want to put your daughter? You know, that's so hard. Is do you think it's fair to her? And then I was like, I didn't think of that. I mean, is it not fair? I don't understand. So I asked a good a friend of mine who's a doctor, who I really respect her, and she said, Oh, please, you couldn't be doing a better thing than letting your daughter be a part of this. This is a journey that's just so powerful and and and enriching. And so, and boy, if she wasn't right, because when I finally spent my vision.

SPEAKER_01 18:45

That's not the most common bit of advice I've received or heard about in the medical community, but that uh is extraordinary. I I agree with this position, but obviously I'm leading a lot more from emotion. But for someone that has been trained medically to say, hey, no, actually, this is a very uh unique set of circumstances. But the uh the human condition, the relationship, the the give and the take and the compromise and the patience and the love that can be witnessed is not something that you could pick up in a book or a movie or read or somebody can't tell you if witnessing it would just really kind of change your life.

SPEAKER_00 19:38

It changed, it was just gonna say that it's life changing. Like you can't believe, and it really does like it changes your the meaning for you, it changes what what what your purpose is, how you see things. And at the end of the year, when my I my hand was forced, and my mom needed to go into uh memory care, and my daughter said, I'm not ready for nanny to leave. And let me tell you, that year I call it the best and worst year of our lives because it was hard. Yeah, but but we were there and we took care of her, and she was happy, and she was happy as she could be with that disease. And that it's that's a hard disease.

SPEAKER_01 20:25

It's a hard disease, it's a very hard disease, and what a wonder I I really appreciate that phrase. As happy as she could be with that disease. I like you in the beginning of the caregiver journey. It's especially if it's happening to someone that you're very connected to, that that you love a lot, or or who's a part of your everyday life. Maybe it's just through text or phone calls or FaceTime or video, but they're a part of the way you live. And then to witness this and see it, it is so dumb. It is so stupid. You're like, this can't really be happening, right? Like you can't, like every day you're like, surely this is gonna slow down, or surely somebody's gonna call me and say the FDA just approve this miraculous drug and hurry up and get to DC and get in line at the Capitol, because then you can get one of the pills. But that doesn't happen. So, as happy as you can be with this disease is something that I hope everybody in the parenting up community can really take the heart. So, um, really, I want to say thank you for sharing that.

SPEAKER_00 21:36

Um, of course, of

Turning Care Into Film

SPEAKER_00 21:38

course. I have I want to save, and you know, because that whole year I made a short film called My Mom and the Girl, which was uh and it wasn't a it was a a narrative, and it was um I don't know if you know Valerie Harper. She plays my mom in it.

SPEAKER_01 21:54

Totally love Valerie Harper. Whoever doesn't know Valerie Harper, then I don't know if we can be friends.

SPEAKER_00 21:59

All right. Okay, let me let me just tell you, she was she is the love. Where's my picture of her? Is it this way? Let me see. Do you see her and me with my arms around her? Okay. Yeah. So she played my mom, and she became like a mom to me as well. She had to meet my mom. They hugged and kissed for two hours on the lips. And singing away because my mom was a singer. Valerie, and they my Valerie in just embodied my mom. She got it. And we were Oscar, we were Oscar qualified. We went to Cannes. We won a lot of awards. It's been 10 years. This is our 10-year anniversary. And people still watch it and say thank you because it's a beautiful story. And it shows that when some parts of you turn off, other parts get enhanced. And my mom, her mommy, her mommy, her mominess went exploded. And and this is just a unique thing that happened one night. My daughter's nanny ended up moving in with us that year to help because my mom knew her. And she was just naturally a caregiver. She used to be my mom's housekeeper. And like she just knew straight away how to deal with her. She didn't, she wasn't trained. She would go there sometimes. She didn't drive. She would take a bus and knock on the door. And my mom would go, What are you doing here? What? You just worked yesterday trying to get two days out of me. Bye. Slam the door. And Irlanda would wait 10 minutes, knock on the door again, and she'd go, Erlanda, I got coffee. Come on in. Heaven miss it.

SPEAKER_01 23:38

How do we give gratitude to the Irlandas of the world who they are angels? They are angels on earth because, like you said, so many times, and this has been my experience, the the individuals, whether they are um, you know, friends or family, friends that have become family, or people who become a part of the higher caregiver team, but they've had no medical training, but they lead with their heart. And if they've had the opportunity to know your loved one in a more healthy state, then I've noticed that it's the connection seems to be deeper. Even if uh you know your loved one who has a disease can't actually say their name or remember everything. There's like this soul connection where there's a comfort, right? There's a comfort and a security, and then everybody's relaxed. And then the person who's assisting in the care, they become so protective. Like I have like one lady like that with my mom, and OMG, she is so protective. She checks me. What have you? What did the doctor say, Jay? So I was like, Well, did you get the medicine? Well, how often is she supposed to take it? Would text me the back to let me know how it went? I'm like, okay, go for it. First of all, lady, okay, I appreciate it. Just chill, just chill. So that's uh that's so amazing. Thank you for that. I want to make sure we talk.

Nursing Homes And The Business Model

SPEAKER_01 25:09

Well, well, you shared uh one of your uh projects already, and I know there was a a lot of buzz around no country for old people, but let's please speak on that. What got you to do it? And that is so activist-oriented, and it's like putting Congress and state legislators and senators on the hot seat. So thank you. I'm an activist and I believe in definitely pushing the hell out of the buttons where we're paying the bill. So if you're a politician, I pay your salary and you damn well better listen to me. Now you can't, I'm not saying you can always do what I want, but you need to listen.

SPEAKER_00 25:52

Yes. But and and and let me add to that, we all as constituents have to do that. We have to step up and do our homework because we do have the power, but we can't do it ourselves. We need we need every we need the collective, yeah. And and we really do because a lot of the problems that are going on, not just in long-term care, a lot of different problems are systemic. And when you have a systemic issue, you know, the the web is so tightly wound and it's hard to follow. That's either it's so opaque, and that's why it takes the people, it takes us. We have to put the pressure on. We the power that we have is in our constituency, in our voices. And if we don't rally together, then we're just letting them game the system. So I'll tell you why I made No Country Full of People, which is a nursing home expose. And um, the last couple of years of my mom's life, I felt so fortunate because I was doing my mom and the girl. And I my mom needed to move into skilled nursing because she ran out of money. Because when you have a disease that long, you are gonna plow through it. So I needed to get something that would take Medical, which is Medicaid here in California.

SPEAKER_01 27:11

Okay, hold on. I just want to say everything in California is so much cuter than everywhere else. Medical sounds so much better than Medicaid and Medicare. All of that. I'm just saying, you know, it's just I'm just saying that you know, presentation matters. And marketing and spin, and it almost sounds like a smoothie.

unknown 27:32

You know?

SPEAKER_01 27:32

Oh yeah.

SPEAKER_00 27:33

Medi-cal. It's Medi-Cal. You'll lose 10 pounds. Yeah, no, it's it's no, it's well, yeah. Well, that's what they want you to do. It's just like, you know, it's like the nursing homes. So you go in and they and you buy the lobby because they have cookies and it's pretty and they got flowers and everything, but you don't go behind the lobby and see what really goes on, and it's hell.

SPEAKER_01 27:59

Yeah, and smell what's going on.

SPEAKER_00 28:01

That's oh yeah, it's it's awful. So um I thought my mom, I got her in. I came, I I got her, I she skipped that three-year waiting list. I was so happy. I was like every day going, I did the best thing. I walk, it's like a Academy Award. I can sleep at night. My mom is safe.

COVID Lockouts And Rapid Decline

SPEAKER_00 28:18

I got her there, and boom, then came COVID. And my mom, who by this time, by the way, she had in the previous uh location that she was at, my mom suddenly went from this vibrant woman who was walking five miles a day with Irlanda, by the way, hanging out with Snoop Dogg, but that's a whole nother story.

SPEAKER_01 28:37

And we're totally, totally having a whole conversation on just norma stored stories. Okay, yeah, yeah, normal stories, and that's it.

SPEAKER_00 28:48

Another time, another time. But suddenly she goes from walking, you know, vibrant blah blah blah with Alzheimer's to a zombie sitting in a chair, can't walk, immobile, incontinent, the whole thing. And I thought, okay, she's dying.

SPEAKER_02 29:03

Right.

SPEAKER_00 29:04

I thought she was dying. That was eight years before she died. And her doctor, her regular doctor, she was going for her regular checkup about three months after that started, and called me and said, Your mom's on a drug called Depacote. Do you know what that is? And I said, No. Do you know that she's on it? No. Well, it's a black-label drug for people with Alzheimer's or dementia, and especially an elder in if you're elderly, which means you can die from it. Because it's actually it's actually for epilepsy. It's an anti-seizure drug. But what it does is it makes them sleep. So it's it's what they're doing is called chemical restraining. So if my mom goes, is that legal? That can't be legal. Oh no, it's not legal at all. Thank you. Thank you. No, but it happens, it is that is what they do to restrain people. It happens all the time. If you walk into a facility and you see the lineup of wheelchairs, and people are like this.

SPEAKER_01 30:01

Yeah, nodding off to the head is drooping to the side, eyes closed, and it's two o'clock in the afternoon.

SPEAKER_00 30:08

Yeah, that's drug. That's drugs, and that's what that is the norm. You go in at in in any time of the day and you'll see that. So uh catsu, I my mom now is in this facility and she's in a wheelchair, and so, but she's still very active, you know, like very social and happy. If I say to her, mommy, how are you? She goes, I am great, I'm alive, life is good, the alternative sucks, right? Love it. So, so we're not allowed to go in like everybody during COVID. Suddenly we're locked out, and and my this place, the five-star facility in Los Angeles, wouldn't even let us do window visits. So it's way no way, way, way, way. So then we just then uh they finally got their act together and started to do weekly Zooms that took about a month and a half. So my mom didn't get hear from her family for like six weeks.

SPEAKER_01 31:05

And that is unacceptable for someone in a um dementia state, in any any of the dementia. It doesn't matter which one it is, but that level, uh, that kind of drop in continuity and connection is devastating.

SPEAKER_00 31:23

Is it is dire, and it is it's it is really awful and it and it can exasperate the disease so quickly. So I'm seeing her only once a week. They only give us one day, and the and the CNA was so sweet, she's the one that was setting up the the calls, and and then all of a sudden, you know, our appointment was at three in the afternoon. I see my mom's in bed at three in the afternoon. I'm like, why is she in bed, Dahlia? I don't know, Susie. It's crazy here. It's crazy. Like, it's like I'm not a nurse, like I'm just you know, she goes, but it's like I don't know. And she was afraid to say you could see, you could feel her fear, right? But I'm seeing my mom diminish before my eyes, week by week by week by

Pressure Sores Sepsis And A Nightmare

SPEAKER_00 32:05

week. And so in 2022, I get a call that my mom's being taken to the hospital because she was having trouble breathing. By the time she got to the hospital, the nurse said to me, called me from there and said, Your mom has been being admitted with a stage four pressure sore, sepsis, pneumonia, and 10% kidney functioning.

SPEAKER_01 32:27

Get off of my camera video, whatever the hell this is. I'm trying not to curse more. You just named, you named multiple um care calamities that could be avoided. That's what makes it never events.

SPEAKER_00 32:49

CMS, the centers for Medicare and Medicaid, if you look up their regulations, uh pressure sores are never events. They're never events, they should never happen because they are avoidable.

SPEAKER_02 33:03

Correct.

SPEAKER_00 33:03

If with the right kind of care and with the right kind of staffing. I don't know any of this, by the way, at that time.

unknown 33:09

Yeah.

SPEAKER_00 33:10

I don't even know what a pressure sore is. What's a pressure sore? It's a bed sore. What's a bed sore? Oh, it's when it when it hurts when you lean too far on one side for too long. That's what I'm thinking. I don't know that it is a cavernous kind of, you know, the the the beginning of hell. And that's what it is. Right. So I didn't know all this. Meantime, my mom was being intubated. She's put put on a feeding tube, which she didn't need, because I wasn't allowed in the hospital. So no one asked for my permission. And it was just one nightmare after another nightmare after another nightmare. And by the time we got her back to back home, home, um, they were ready for her to die. My mom wasn't ready to die.

SPEAKER_01 33:54

At this facility where she's where she'd been living, and they really knew her. So one one might hope that they would feel more like, hey, a family member is returning. Let's put flowers in her role. But instead, their viewpoint is, yeah, she's not gonna be here.

SPEAKER_00 34:15

She's gonna succumb. Because I said that okay, so where's the wound specialist? The doctors at the hospital said they need she needs a wound specialist, right? Well, we're looking into that. What do you mean you're looking into that? Like she needs it today, right? And I don't want her on this feeding tube. Why is she on a feeding tube? My mom lives to eat. What else is she gonna do? Come on. And they're like, oh, well, she's gonna aspirate. What are you talking about? She's not aspirating. I've given her stuff and she's not aspirating. Right, she's chewing, she's chewing, and she's literally going like a bird. It's heartbreaking. It's heartbreaking. So, um, and then they've got, you know, and the feeding tubes are so uncomfortable. They make you aspirate more than you know, than even aspirating on food, which we all do, by the way. And yes, is it a danger? Sometimes, but not always. Right. And and my mom already had pneumonia from their neglect.

SPEAKER_02 35:06

Correct.

SPEAKER_00 35:07

Right?

SPEAKER_02 35:08

Yeah.

SPEAKER_00 35:08

Uh so you know, the story's too long. Please watch this documentary and I'll tell you why. There's so much to learn, not from me, but from the 70 people that I interview who have been, who are doctors and frontline providers, and researchers, and academics, and you know, policymakers, and you know, lifelong advocates, like and people from National Consumer Voice for Quality Long-Term Care who know what they're talking about. And this is a crisis that's been going on for 50 years, and it's not, it's something that is so huge that it was that I didn't even know what I was dealing with. All I knew is that I was being gaslit, yeah, and that they were lying to me. And I knew they were understaffed because, which is part of their business model, by the way. Uh I knew that because the CNAs were telling me. Right. They're saying, Well, I left a man on the toilet, so I can only be here with you for a couple for a minute. And I'm like, they're like, Can you help me hold your mom up? I'm like, okay, sure, but there's a man on the toilet.

SPEAKER_01 36:09

Right, like, who's the man on the toilet?

SPEAKER_00 36:11

And I'm telling, so I go to the administrator, I go, I know you're under staffed. I go, but you know, and and I'm allowed in here because you tell me my mom's dying, but she's not. She didn't die for six months. And the reason why she died is because they stopped caring for her. It wasn't that she was dying, they just stopped caring.

SPEAKER_01 36:28

Any of us, any of us could die if we stop being cared for. Like I could die, you know, unnecessarily within a year if I'm not receiving, you know, physical touch or food or water or, you know, somebody like for some reason if I can't walk, somebody needs to come in and like move my legs up and down or something just to make sure all my body functions stay operative.

SPEAKER_00 36:54

All I know is I don't know. That's all I knew during those six

Chemical Restraints And Depakote Exposed

SPEAKER_00 36:57

months. And when I saw this movie, I saw a miniseries called Dope Sick on who Yeah.

SPEAKER_02 37:02

Yep.

SPEAKER_00 37:03

Okay. So it is about the it's about the OxyContin crisis. And I'm watching it's it's um, you know, Peter Sarsgaard plays this, the main investigator, federal, federal prosecutor who goes after the Sackler family. Yes. And Michael Keaton plays the doctor who ends up getting uh addicted to OxyContin because it's extremely addicting, and they are just horrible people, the Sackler family. Well, Rick Modcastle is the guy that was played by uh Peter Sarsgaard. And at the last on the last episode, his partner comes in and says to him, so I've we've got our next case. It's another pharmaceutical, and it's Abbott Labs, and they're off-marketing Depacote to nursing homes to chemically restrain them. I'm like, what? Boom. Right. So I reach out to the real Rickmont Castle through LinkedIn.

SPEAKER_01 37:54

I say, you know, I love when when DMs work in a positive way.

SPEAKER_00 38:00

Yeah. Yeah. So I said, I would you come on my podcast, which is Love Conquers All's, and and talk about chemical restraining and and how, you know, I want my audience to know what this is about because this happened to my mom. He said yes. But what I didn't know after we recorded, he said, what's happening with your mom is not, you know, it's not an isolated incident. This is not your mom's facility or you or her. This is a systemic crisis. I have been, you know, prosecuting nursing homes for over two decades. And even if I prosecute them and win, they still are not, you know, they're they're still happening and it's getting worse, right? And it's only getting going to get worse. And I said, Well, what can we do? And he said, That's a really big question. And he so he said he was retiring in 2022. And he said, if you do a documentary, because he knew I was a filmmaker, and he said, I, and you should. Um nudge, nudge, nudge, nudge, nudge, nudge, nudge. Yeah, yeah, he did the Jewish guilt on me, and he's not Jewish, I am, but he did the whole Jewish guilt on me as well.

SPEAKER_01 39:08

Well, listen, as a Catholic, as a cat, as a Roman Catholic, listen, no one has to give us the guilt between the Catholics and the Jews. We we have enough guilt for the rest of the globe. Right? Yeah, we're professional guiltists.

SPEAKER_00 39:23

So I am like I hit the ground running. I'm like, you're in, I'm in. Okay. Because this is a man that knows how to vet everything. He knew, he knows this kind of web, he understands the business model, and he brought a lot of you know, gravitas to the pop to this project.

SPEAKER_01 39:40

Very credible, very extremely credible.

Where To Watch And Why It Matters

SPEAKER_01 39:44

I where can people see it?

SPEAKER_00 39:46

Okay, Amazon Prime, okay, and it for five dollars free on Tubi.

SPEAKER_01 39:51

You get commercials, but you know, these three up commercials gives you a chance to go to the bathroom and get something else to drink.

SPEAKER_00 39:59

And take a and take a breath because it's not an easy watch, but I promise you, you need to know this because it is a it is a business model that's been going on for over 50 years, it hasn't changed. It is, it's it's it's a system that's been gamed by people who are making billions and billions of dollars off our loved ones. They're warehousing people. And I am Pollyanna, I'm not like, you know, I'm not an extremist who is wants to like you know be inflammatory. I promise you, that's not me. This is what is happening. This is exactly what is happening. This is what is happening. Wait, so I so I wanted to say that the reason why I at the end of this, it took me four years to do the documentary. I I told Rick it would take us six months because I've done documentaries that quickly, and I was like, okay, I lied. This is a biggie. This is a big one.

SPEAKER_02 40:49

Yeah.

SPEAKER_00 40:51

But at the end of it, I had this. You asked me why did I do it? I had this this sort of uh down feeling, like, okay, it's over, it's out. But now I've dumped all this information on the public, and I feel complicit. Like what I haven't given them an answer, like what to do. And I and I wrote this whole essay on my subset called, you know, the ethics of storytelling. Like what are those ethics? And when you've done all this research and you put it out there, do you have some responsibility to help guide people? And I also talk about the ethics of of the audience. If you watch something and you see it's wrong, what are what is your responsibility? Hell yeah.

SPEAKER_01 41:37

Hell yeah. That is that is the mantra of those of us born and raised and and uh or or spending you know significant moments of your coming of age in Montgomery, Alabama. See something, say something, do something like that. That is I I don't care if if if it's something small that's happening on your block, or if you see something that's happening in China. The point is say something about what you see that's screwed up because if we don't, nothing ever changes. Nothing, the power is in the masses. Oh my god. I love this so of the people is greater than the people in power. Boom. Boom. We're definitely having our uh normal conversation. Who knows? That might end up being 12 episodes of its own. I'm so great, I'm so grateful for your transparency and your vulnerability and your willingness to keep fighting because often once the person that we were caring for transitions, there comes a break between this work and the person's engagement. But you have stayed very engaged and you are a supernova. You're a lighthouse in a very, very dark neighborhood. So thank you so much. I look forward to it.

SPEAKER_00 43:02

Now tell us about you tell us about your walk, please.

ROAR Nonprofit And Reform Strategy

SPEAKER_00 43:06

Okay, so out of that, my question about ethics, I decided, you know what, we started a nonprofit called Roar. It stands for Respect, Oversight, Advocacy, and Reform for Long-Term Care. Are you really a lion? Like a lion, Roar. And my and and if you join up with us, you're called a roarier because you're a roarier. Love it. I need that shirt.

SPEAKER_01 43:30

Do we have a merchant? I'll get you one. I totally need that shirt, yeah.

SPEAKER_00 43:33

Oh, you need it. So uh and I said to Rick, because we we we did it together, we're co-founders of it, and I said, you know, I really truly believe because the ad traditional advocacy has not worked. Because let me just tell you one quick, quick uh little stat is that there is a lobby, there's a lobby, a nursing home lobby that is so powerful and is so rich. They're sitting in our seats at the legislature, so they're the gatekeepers to policy change. We we can't Make change because they're there. They're paying our politicians, their campaigns, and all on. So, how do we do it? We have to take the power back, but this is a topic no one wants to talk about getting old, dying, right? We don't want to talk about it. So I am trying to use story. Rora's using story to touch people's hearts, right? That's how you get people to lean in. You have to lean into this, folks. And because here's the thing it's you know, getting older, if you're lucky, is equal opportunity. And if you get older and you need help, you're gonna be part of this crisis because it isn't going away, it's not gonna go away without us. And our children are gonna inherit this burden, and it's a burden. And so we need to stop it. We can listen to playbook or readers bookstand. It only always happens from the bottom up.

National Walk Details And Empty Chair

SPEAKER_00 44:54

This is a walk, it's about awareness. We are now, I said, I'm gonna do a national walk, and Rick said, You're crazy. And I said, like you. And so, and so I said, I'm doing this. I went all 50 states. He said, You'll be lucky if you get 10. Well, we have 32.

SPEAKER_02 45:10

Love it.

SPEAKER_00 45:10

So I am very proud of that. And who knows, you know, we have 16 more days. We might have more than that because I just had three new states sign up because the ball starts rolling, you get that ripple, right? Yes, and I'm gonna say what day. September 27th. September 27th. September 27th, and it's it's uh it's based on a day that we established, which is the national the National Long-Term Care Reform Day, which is an official day now. And so we're launching it with this national, the first ever National Long-Term Care Walk for Reform. And as I said, we're we might there's sometimes there's two walks in a state. Go to our website, you're I'm sure you'll put it up there, and roar for ltc.org, and find out if there's a state with your state there. Come and join us. It's really a kumbaya family-oriented uh uh event. We're gonna where each event is having this, which is called the the empty chair experience. Okay. It's gonna be one that's made, and we're honoring people in that in a wheelchair like that with their photos who have lost their lives prematurely in in nursing homes, but not when they were elder, or maybe when they're elder, but not when they were sick at the prime of their life. So, and then a story about them on the back, so that we honor them and we put a face to the statistic so people understand that these are people, these are not numbers, these are not gray lumps in a bed, these are people that we loved.

SPEAKER_01 46:42

I love it. Roar on, my baby. Roar on. Listen, we will make sure that all of that information is posted, is put on our video, it is, you know, listed um within the show notes for the audio. And congratulations in advance for a very successful national day of walking.

SPEAKER_00 47:10

Um, how long is the walk? It's gonna be different at every side, every place was gonna have their own walk. And so, and if you if you are, you know, if you have a disability, you are welcome. Bring your children, bring your dogs. There'll be speakers. I'm having about 10 speakers at mine. I'm I'm having some some some some good from the OG. I've got some, I've got D Wallace is coming because she's talking about anti-ageism. And we've got and I've got uh Lisa Gibbons and um yeah, and so um and I've got people from Canner, which is the which is in our state, California, um, California advocates for nursing home reform who are been around for 40 years, they're gonna become speaking, and um Budsman and all kinds of people that are gonna explain the system and just you know reinforce what you need to know. And it's really not gonna be scary. We're gonna have fun, yes, and we have music, and oh, there's a big party in Vegas. We have a walk in Vegas that's gonna be off.

SPEAKER_01 48:08

OMG, let me try to figure out if my calendar is free and I can get to the water based because I mean, listen, the afternoon food event has to be great because it's famous.

Closing Gratitude And A Call To Demand Better

SPEAKER_01 48:21

Thank you so much, Susie. Oh, thank you. Thank you. You are such a light, such a breath of fresh air. This work is hard. Being a caregiver is hard. When the person you care for transitions on, staying in the space is not easy. It's a it's another toiling event. I look forward to us communicating more, maybe collaborating, maybe we can do a documentary together. Let's throw that out there to the universe. Congratulations, congratulations, congratulations. Thank you so much.

SPEAKER_00 48:59

I I thank you.

SPEAKER_01 49:04

The snuggle up. Chemical restraint. I am pissed off. I did not know that there was actually a medical term, that it's legal, and that the system abuses it because the business model of facilities for the aging is based upon being understaffed. Because I don't want somebody to come snatch me off of YouTube and Apple Podcast, I'm going to keep my expletives to myself. But when I say I'm hot, I mean fire and hot in Mississippi in June. Okay? You're telling me that you know about it. You know it's hurting people. You're using it as a way to mitigate the cost. Come on. You may not want to be better than that, but damn it, the podcast. The system may not want to be better than that, but we're better than that, and we're gonna demand it. We're gonna put a link in here that has something to do with how you can find out about chemical restraint, its legality, and how to advocate against it in your area. Alzheimer's is heavy, but we ain't gotta be.