Love Conquers Alz

JENNY ABELING: Introducing Kids to Long Term Care

Jenny, Abeling, Susie Singer Carter and Don Priess Season 8 Episode 86

Advocate. Leader. Caregiver. Jenny Abeling is dedicated to helping those in need, through the complexities of long-term care. Currently she is the Governor’s Commissioner on Senior Services, working tirelessly to raise up senior related needs across the State of Oregon.  

Formerly the Essential Worker Healthcare Trust Director, Jenny led a first in the nation approach to lift Long -Term Care workers by supporting their health and wellness.

Now she has launched JennyAbeling.com, where she provides personalized support to individuals, families and Long -Term Care workers, helping to navigate their care needs.  

Featured on CNN, Jenny shares her knowledge and experience through media, podcasts, speaking engagements, and events to harmonize empathy with her unique expertise. 

Jenny was recently honored by the Gray Panthers as a recipient of the coveted Above and Beyond Award honoring Long-term Care Workers.

No Jenny has branched out as an author with A Kids Book About Long-Term Care, titled A Kids Book About Long-Term Care.  She truly is a bright light in the world of caregiving and we were thrilled to have the opportunity to talk to her!

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Unknown:

When the world has gotcha down, and Alzheimer's sucks.

Don Priess:

It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is love conquers all is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie singer, Carter, and me, Don Priess Hello, everybody. I'm Suzy singer Carter. And I'm Don Priess. And this is love conquers all calls. Hello, Susan.

Susie Singer Carter:

Donald, how you doing?

Don Priess:

I'm swell. How are you?

Susie Singer Carter:

I'm good. I'm good. I feel I feel rejuvenated. Asking why? Why is that?

Don Priess:

Let me try that. Hey, Susan. Why do you feel rejuvenated?

Susie Singer Carter:

Well, you know how much I love music and dance. And you know how long we've been secluded in our editing. Corral. Over here? Yes. In editing bay land with

Don Priess:

11th Month 11th month of sequestered in the edit bay. So

Susie Singer Carter:

yeah, yeah. So my dear friend, Megan McLeod, who is an amazing human being and actress and voiceover extraordinaire, and dog trainer, and dog trainer, I might add, my daughter extraordinaire. She's just an incredible person. And but she had an extra ticket to see Chicago at the Pantages Theater. And guess who was her date? Me?

Don Priess:

Wait, give me Oh, I thought it was gonna be multiple choice.

Susie Singer Carter:

I guess it was you. And guess who got there? Razzle Dazzle on?

Don Priess:

Multiple choice.

Susie Singer Carter:

I'm going with you. Yeah. And 5678. So anyway, I it was such a great show. You guys, if you are in LA, this cast is extraordinary. I loved it so much. And I needed it so much. I was literally at first I have no idea why why we were so fancy. But we were like in the fifth row center. So I was it was like I was on stage. And I just I felt like I just had like a fantasy that I was up there doing Fossey, right. I was doing it. I was jazz hands. All day long. There was jazz hands. It was spectacular that it was one of the best I've seen. And I highly recommend it. And I needed it was the best therapy. I feel. That's because knew me. Yeah, I had

Don Priess:

something very similar while you were doing that. I was I would stay at home with the dogs. That's it. But we did do jazz pause

Susie Singer Carter:

did jazz pause and you got your rep your razzle dazzle on? Absolutely.

Don Priess:

Yeah. That's the thrilling life I lead.

Susie Singer Carter:

Yeah. I wonder if people don't know our situation. So just a little a little inside info. So Don and I are best friends since I'm 19. And, and we are well I wrote a pilot, a TV pilot based on us called single ever after. Because we are roommates and have been for 10 years after my last divorce. And we are just BFFs and work together. We're co producers and we produce everything together. And it's it's we have a lot of fun. Because he's scared of me.

Don Priess:

A lot of fun. totally scared. She's twice as strong as me. You know, which, which is it's not good for me. But you know, whatever. Although I'd let her do all the hard work. So that's true. I

Susie Singer Carter:

do I am the handy girl.

Don Priess:

And now if you know first time I have two dogs never had dogs before and so yeah, it's a whole nother

Susie Singer Carter:

world and honestly, if you know, Don's never had dogs and they love him so much. He is the favorite. And he will he loves them so much too.

Don Priess:

I do I do I don't like the things they do that require cleaning up. I don't like that at all. But but no they are they are special. Little little chaps. Well chaps and chap. S and the queen here in the cleanup. We're gonna pop up some pictures of them right now there's there's Alfie and who smiles. Yeah, it's crazy. We'll show all of that. And then that's real. That's real. Yes. Here's digit digit the queen. She wears pearls has the proof on the head. Oh, and she's the busiest dog in the world. She

Susie Singer Carter:

always busy has something to do everyone, all our friends, my daughters. They all say, Alfie is Don engages me, because it's always busy. Do you plan to do

Don Priess:

and I get lost on the stairs? So yeah.

Susie Singer Carter:

And if there's food, you're happy.

Don Priess:

There it is. And it's in my mouth. That's right. Food

Susie Singer Carter:

and a good chair. And you're happy do good scratch. We have the IRS. You're happy. Yeah. I'm happy. You know why? Why is that? Here's another reason why I'm happy because we have a great guest today. Do

Don Priess:

we have an amazing guest today you love

Susie Singer Carter:

this person. She's, you've learned you've come to love her. As you as I have. She is sensational. We had such a great interview with her and I interviewed her myself for No Country for Old people our documentary, but but now you you got the chance to to meet this delightfully. Brilliant, I should add, well spoken, extremely knowledgeable woman. Now on this show, so I would, I would like you to share a little background of this,

Don Priess:

I will now share some background and it goes a little something like this. Advocate, leader caregiver, Jenny Aibling, is dedicated to helping those in need through the complexities of long term care. Currently, she is the governor's commissioner on senior services working tirelessly to raise up senior related needs across the state of Oregon. Formerly the essential worker health care trust director, Jenny lead a first in the nation approach to lift up long term care workers by supporting their health and wellness. Now she has launched Jenny abling.com, where she provides personalized support to individuals, families and Long Term Care Workers helping to navigate their care needs. featured on CNN, Jennie shares her knowledge and experience through media podcasts speaking engagements and events to harmonize empathy with her unique expertise. Jenny was recently honored by the Gray Panthers as a recipient of the coveted Above and Beyond Award honoring long term care workers. And now she has branched out as an author with a kid's book about long term care titled, a kid's book about long term care. She is truly a bright light in the world of caregiving. And we are thrilled to have her with us today. So let's say hello to Jenny abling. Hello, Jenny. Hi,

Jenny Abeling:

hey, thanks so much for having me here. Of course,

Susie Singer Carter:

thank you for coming and joining us. I'm happy to have you on and share what you do with everybody, because I got the pleasure of meeting you and connecting with you through LinkedIn. And you are also in our caregiving community, and you are an amazing advocate. And you also FYI, she is participating in our documentary. And, and we're very happy to have you in the documentary. So we were just glad to share I just I'm a big fan of what you're doing. I love I love everything that you're doing. So tell. So why don't you share a little bit about the plethora of things that you do? Because I know you started as a case manager. And then from there, you you would you worked for different organization that advocated and consulted for residents and long term care. So explain, like, let's get a little background on you. And then we can talk about the exciting things that are happening today. Yeah,

Jenny Abeling:

yeah, of course. So, you know, I think everybody has their why of why they get into long term care, some choose to come into long term care, some, you know, habit just drop in their lap when their family or friend needs a loved one. So I think I got started like most people, which is that my grandma had dementia. And she was the person that I just idolized and cared for and spent so much time with. So I saw her go through that journey as a child made me want to help other people and help families. You know, I started in public health, and I was looking at these big, large issues. And what I saw time and time again, was that communities and families didn't really have support when it came to long term care. And so I thought, you know, I need to actually have like boots on the ground experience. So I became a caregiver. I became a CNA, certified nursing assistant, I worked in facilities, I worked in people's homes, did hospice, did acute care, worked in hospitals, kind of the whole plethora from beginning to end you really

Susie Singer Carter:

do Yeah, that's amazing. I didn't know. Yeah.

Jenny Abeling:

So, you know, passing meds and helping people on NOC shift at night like you have to really see it all to really understand it. From there I, you know, started working for the state of Oregon doing Oregon Health Plan, which is Medicaid and Oregon. And I learned so much in that position going to people's homes, getting people signed up for long term care services and supports through Medicaid, and then ultimately, leaving there and then working at aging and disability services for Multnomah County, which is the county in Portland or again, that is a amazing program through Medicaid for long term care supports and services for people to either receive care in their own homes, or in facilities. So I would just travel around to people's homes, I do their care assessments, I connect them with caregivers, you know, I'd help them navigate this broken system. And that's where I was like, Oh, my God, this is a shit show. I am hoping it's okay, I swear. But like, that's just me is like, go to town. Oh, my God, like what a band aid fix of so many issues. And when I was there, I made so many relationships and learn so much. And I made relationships with facilities. And those facilities were like, Hey, Jenny, we want you to come work over here. So I was like, Okay, I'm gonna go work in the facility. So I started with admissions into facilities. And that is one of the areas that people don't talk about a lot. But it's so important, because then you really understand the money, motivation of things and long term care, because the first thing you look at when you see somebody's medical record, and you and they want to come to your facility, is who is their payer? Right? Yeah. So if it's Medicare, straight Medicare, you're like,

Susie Singer Carter:

Oh, my God, yes, raise them.

Jenny Abeling:

And then it's like, well, then we got 20 days, because when they hit the copay, it's a lot of people can't pay. So like, we gotta get this person in and out and 20 days. But if you see a different payer, and it says Medicaid on it, and then you look down, and that person has any sort of other situation happening. That's when you're like, oh, no, no, no, no, we don't have any beds available, even though like they'll say, we don't have any Medicaid beds available, which is not a real thing. It's just like, whatever. So then I worked my way up into the facilities, they were like, You're so good. We want you to be, you know, this, and we want you to do the marketing. And we want you to do all the relationship building, and then all the social media and the, you know, branding and website and everything. And then they're like, We want you to be administrator. And that's when you get in like the closed door rooms. And so tell

Susie Singer Carter:

us about the closed room door. Door rooms, I want to know about that.

Jenny Abeling:

Yeah, and I think I bring you a really unique perspective, because I think, you know, being a caregiver myself, and then getting yourself into a position of power, where you actually see the motivation and the people that are making the decisions and the owners and things like that. So like, that's the perspective perspective I bring. So what you'd been see is, then you're seeing like the financial statements, and you're figuring out how people are compensated for the work that they're doing. You know, there are, I'm not going to call it kickbacks, but there are bonuses on like, who comes into the building, and how much money is made and how many what the census is, you know, everything revolves around the census of the bill and building not on like, the resources or staffing of the ability building, but the actual census, they want to fill the beds. So that's when you kind of see, okay, well, this is totally money motivated. This is not about you know, doing what's best for individuals, it's really a business and the business is, you know, we have to have a certain return on our investment investments, because the owners aren't the people in the building. No, you never see the owners, you know, even in recent work I've done they won't even tell you who the owners are. That's when they don't know.

Susie Singer Carter:

Nobody knows. They're like the mystery people behind the behind the curtain.

Jenny Abeling:

Yeah, and I was just doing like a social media post about like, you know, basically the private equity and real estate investment trusts, those are the people who are buying long term care and you don't buy something unless you can make money on it, or you can put a lot of debt on it. And that's another thing that they're doing is they're putting these huge mortgages by like taking out ridiculous reverse mortgages on properties, you know, hiding debt that they already have, you know, that sort of thing and kind of just scooping out whatever's available either profit or, and

Susie Singer Carter:

bleeding it to death. They bleed it to death. Yeah, yeah. Oh

Jenny Abeling:

my god, yeah. And then, you know, and then it becomes, you know, the financial statements don't look good, because then you're showing like, a mortgage payment that's like, you know, $65,000 or something that's ridiculous. So it looks like you're not actually making that much money. And then and then it's easy to say that, you know, Medicaid reimbursement is not high enough, and that we need more money, and we can't have any more staff, bla bla bla bla bla. So recently, I was running the essential worker health care program. This is a first in the nation approach to helping long term care workers started in the state of Oregon. So go Oregon, yay. Yeah. India. And so this was, this was a way to, you know, support the health and wellness of long term care workers post COVID 19 pandemic, were people that work in long term care suffered horribly, because there was no support for these individuals. You know, I was running an assisted living during COVID. And damn, was that a fucking shit show? Like it was a wild ride? You know, we didn't have any COVID cases. But that's because we literally killed ourselves. Like sleeping there. I was standing in front of the front door, asking people not to go outside, you know, I was the bad guy. And that was the way to protect people. But like, in reality, we, we cause so much loneliness, so much depression, so much isolation, oh, my God, it was in insane. And during that time, I thought, how do we help workers? How do we help consumers, I need to take this pain. And I need to channel it. Because like, otherwise, I'm going to kill myself basically, like you and me. Stress was killing me. I literally was in the hospital at one point in the emergency room. And they're like, we can't find anything wrong with you. But I was bent over like, could not move. And so at that moment, I was like, Do people just not care? That's where I was at. I was like, do people not care? And like, I'm a huge optimist, and I am like, positive energy. But then I kind of took a turn for like, hey, actually, is this all corrupted? And do people not really care about our loved ones, our aging and disabled family members and community members and neighbors, I started going into like a bad place. And I was like, Oh, my God, I was like, No, this is what I'm gonna do, I am going to channel all of this pain, and I am going to turn it into something that's beautiful. That's like a piece of art. And that's educational. And I was like, There's got to be like a two prong kind of step of what, how we're going to go about changing long term care, which is we need to talk about it earlier in life. So I'm sure you guys know this, but like, I'm talking to 7580 year olds, like community engagement, people in Portland, they have no idea. And they are people that potentially maybe need long term care soon, and they don't know it. And then you go talk to children. And they have no idea either, and nobody talks about it around them, because it's too much. They can't handle it. So like, let's not talk to kids about

Susie Singer Carter:

it's not fair. It's not fair to talk to kids about it. Right. Subject into that.

Jenny Abeling:

Subject them Yeah, yeah, even though care is happening all around them. There's care happening in people's homes, people have live with their grandparents, there's intergenerational relationships, and then when the kids do come to a facility, because we never talked about it, and because it's, you know, seen as like, you know, there's so much ageism and ableism, in our country, that it's like looked on as a bad place. I love you. And the kids, when the kids come in to the facility to like, sing a song, you know, that whole thing, the kids are scared,

Susie Singer Carter:

they're scared to death. They're scared to death. And

Jenny Abeling:

then the residents are just like, okay, the kids come and then leave, and then never come back, which makes literally no sense at all. So I decided I'm going to create a book that's going to teach kids how about long term care who needs it? What does it look like on a really basic level, but then the book is a read together book, which means that you read it together with your adult, whoever your adult person is that you read with, and that way you can actually spark a conversation about long term care together, right, which is so great, because nobody wants to like talk about it. So that's kind of where I'm at. I'd have a copy. I'm saying you, I'm sending you this is coming to you in the mail and I can't wait. This book this a publishing company called a kid's book about is amazing. They make books, you know, a kid's book about racism, a kid's book about empathy. You know, and when I was having one of my lowest moments, I was like, I'm gonna write this book, and I'm gonna approach this publishing company. And they went with this idea, because they know that kids are ready. And so it's just really exciting.

Susie Singer Carter:

I love it so much. And can I just ask, can I just compliment you and tell you how smart you are and how you are? You're doing such a mitzvah, then that's, for those of you that don't speak French. That means a good thing. But I know we speak the same language, but yeah, okay. But, you know, I have a two year old or I had a two year old child have she still I mean, she's four now. But when my daughter had her baby, it was during COVID. And so Eden is her name. She really only met my mom through through zoom. Yeah, right. Yeah, but so she knew nanny, but once we got in to see her, this little two year old, and I think you may have seen it in my trailer. And then she had, we didn't tell her to go, go give hugs and kisses, she went right up there. And she knew it was nanny, and she wasn't afraid. And she just got right on and didn't, you know, didn't hold back. She was patting her and looking at her and kissing her and looking at her. And you realize, like, if you don't, if you indoctrinate children early on, and you keep those relationships alive, that when you when they do go into a situation like that, it's just normal. Yeah, it's accepted. It's not scary.

Jenny Abeling:

There. It's not scary at all. And they have the natural instinct to care. Yes. And they're so open. And kids are resilient. I have a nine year old daughter, and like, we've been through some stuff through COVID It was, you know, it was crazy. And they're, you know, people have passed away. And I've been so open with her about it. And when and because of that, there, it's not scary, and it's not stressful.

Susie Singer Carter:

And it's actually healthy. I you know, when I wrote when I when my mom lived with me for a year and she had Alzheimer's is right in the middle, I call it you know, the, where she's straddling the fence. Basically, she's very, you know, very communicative. She's physically well, everything, but she's fighting having Alzheimer's, you know, and I did a film about it with with Valerie Harper called my mom and the girl. And when I was going to move my mom and I was going through divorce, and I had a 16 year old daughter, and every, almost everyone down the line, and my friend said, How could you do that to your daughter? Move your mom in? Because it would be so hard. And I really thought, Am I doing the wrong thing like I should, I mean, on my ruining like her, you know, prime teenage years. And I asked a friend of mine, who is a doctor and the female doctors, she said, You have got to be kidding me. Like you couldn't be doing a better thing. And I put this in the movie, because a year later, when we finally had to move my mom out of my home, she, my daughter said I'm not ready for nanny to leave. So and this was a rough year. I mean, we were like, you know, going through like, it was the the ups and downs of Alzheimer's and my mom was a pistol, you know, we love her. We loved her to death. But I mean, you know, it changed her life, my daughter's life for the better. And all of ours, it's, it's important. So what you're doing is amazing. And I love it so much like, I'm going to read it to my two little baby girls over here. As soon as you send it to me, I'm going to read it. And I'm excited too, because I know Eden knows about nanny be having to live in another place. And we'll use nanny as part of the example, you know, and that's going to be so great. Because that's, it's a ripple effect what you're doing.

Jenny Abeling:

Yeah, and honestly, you know, I know a lot of us are like, how do we change long term care. And I really, once you see like the power dynamics, like in states and at the federal government level, and you see like, what's really happening, you realize that we actually need to grow adults that understand the levers of power. Because if you don't understand the levers of power, and you're not educated, then you can't advocate and you can't change anything. So we need to teach kids about long term care. So they can grow up to be adults who actually know what's going on. And we can say, hey, we don't want this to be like this anymore. But

Susie Singer Carter:

it's so Jenny, in your opinion, you know, we're on a mission to make that change. Like, like sooner than later because every every minute that goes by I know somebody's suffering, right? And I it's very difficult to think about it but I have to that is that motivates me. And how do you see like if you if you could, you know, wave a wand like what what would make the change in those levers like how can we change that? Yeah,

Jenny Abeling:

I think everything is money motivated. So currently, we have a patchwork system of Medicare and Medicaid. And like I said, You're the payer of choices Medicare. So the ideal thing would be that we move to a single payer Medicare system that expands to long term care. Because when everybody is in, it would make a level playing field for everybody. Because when you're on Medicaid, whether people want to admit this or not, you get worse service. Also, we shouldn't have to spend our life's worth and our family's wealth to pay on to Medicaid and then have Medicaid pay for us, and then Medicaid, come back and say, Hey, by the way, we, here's our estate recovery, and we're gonna pull all the money out of your, you know, family, so it's scooping out the middle class of this country, literally, because people are paying private pay rates just to pay down to Medicaid. But once you get on Medicaid, you're basically a ward of the state and where that facility will accept you, and you have to accept the care that's provided there, you don't really have any options. So I'd say we have to move from, you know, basically moving into a poverty situation, which is Medicaid, and you know, you can't have more than the resource limit. So it means that you have no money, you have no money to help your family, you have no money to help your community. So this is another thing that's separating us. So I think from a money perspective, we need to move away from spending down all of our money, all of our generational wealth and move to a Medicare system that actually pays for a long term care, like you shouldn't have to do that you should be entitled to be provided for and this is a perfect example, I say to people all the time, if there was a drug, you know, if your pharmacy benefit manager, and there was a drug that treated dementia, Alzheimer's, schizophrenia, strokes, whatever you want it to be, you know, we would pay for it, because the insurance payers would pay for it. But because what people need in long term care is caregivers, usually, they need time with people. And because of that, that's all paid for. Even in the Medicaid system, it's so hard to navigate just to be a paid caregiver. It's ridiculous, right? So it's like, we need to move to a system where it's like, not money motivated, and we need our payers to be forced to pay for what is needed, which is caregiving community, helping people stay in their own homes, ideally, would be the first thing. How I

Don Priess:

just want to get a take to make that happen, though, what you know, we obviously, you know, because this is so money motivated, which goes to, you know, people getting, you know, in other people's pockets, or politicians in particular, how do we break that? Yeah,

Susie Singer Carter:

but before we go into that giant subject, because that is the next question. But I want to I just want you to explain to people listening, because it's it's so complicated. Why do people have to pay down? Like, why? How do they go from Medicare and private pay? To Medicaid? What, what, how do you get there? And why do you have to pay down? Like, where's that? Where's that line that you cross? Yeah,

Jenny Abeling:

yeah, of course. So, most people, you know, whether you're over 65, and you have Medicare, or you're you don't have Medicare, you find out that like, okay, nothing. Nothing's going to help me pay for the long term care services and supports I need for my family. So I am going to have to pay out of pocket. Example is my aunt who paid $25,000 a month to keep my uncle at home with her recently. You know, I traveled back and forth to Chicago and it was a complete shit show because Medicare does not pay for in home care. People don't know this. You can have a home health nurse come over to your house, and maybe you get like a shower or something. And maybe they look at your meds for a little while. And then that home health company is like, hey, we can't build Medicare anymore. And if we don't have somebody to Bill, you know, you're going to be cut off. So then you're a fam unpaid family caregiver at home. So you're struggling. So,

Susie Singer Carter:

Carolyn, I'm sorry. Is there a limit to Medicare for home care is what you're saying?

Jenny Abeling:

Yeah, so eventually, you graduate off of home health, because home health is for acute situations where you are transitioning. Gotcha. So you're transitioning out of the hospital and you get some home health, they get you to like basically a plateau and then you graduate off of it and you're no longer eligible for it. So then you're at home. And usually, the woman of the house, if there is a woman of the house, she starts not being able to work anymore. And she needs to become the family caregiver that's unpaid. And then you are losing an income in your home. So this is why I'm saying we're not supporting people staying in their own homes, right because the people at home that need To help you they have to stop working to do that

Susie Singer Carter:

now so that somebody will push back on me like with my documentary and are just saying, Well, why did you leave your mom in there for six months? If she was suffering? Why didn't you take her home? You know, and, and blurry game land game and said, I took care of my dad at home, I took care of my mom at home. Well, at the point where my mom where I realized what was going on, my mom was her acuities were so high that it would be a disservice to bring her home, you unless I was in the 1% and could bring, you know, a full time registered nurse or to at least how was I supposed to do that? Right? Yeah,

Jenny Abeling:

and that's because everything in this, you know, industry and country is put on the individual. So it's like, why did you not take care of that person? You should have stayed home with them? Well, we know that people have to pay their bills, people have to work, you know, also, when somebody's acuity becomes so high, where you need multiple caregivers, which is the situation that's happening to many people is that people need two person assist. How are you going to provide two person assist at home? Right, really difficult to do unless you have enormous amounts of money to always have a caregiver sitting there. And even with that, like my uncle, he hated the caregiver that came from the agency. So he would always, like rely on my brother. So it was like my brother wasn't there. He was like, having lots of behaviors and things were going sideways. So you need a whole group of people to help you stay at home. Totally. So I think like shameful that people would blame you for it. Oh, it says you're awful. Your mother's acuity was so high.

Susie Singer Carter:

Like no, it's terrible. They do. They literally set like I've gotten how many Dawn now? Like, shame on you. Shame on you for like,

Don Priess:

endless and I'm like, how dare you.

Susie Singer Carter:

I'm like, shame on you. You don't even know my situation. Are you kidding me? And my mom was my favorite person in the whole world. I would do anything for her. They're like, Well, why you can you know, because I would I my responses and I don't need to answer everybody. But part of me says I need to educate people as to why you can't take people home. And that, you know, some I know that there are some states that caregiver family caregivers can get paid a certain amount of my right. Yeah, I wasn't aware of that. At the time, I wasn't aware that California is one of those states didn't know that. I was paying for everything out of my pocket and my mother's pocket, you know, whatever, whatever monies she had left at the time, and you know, and that was it. We didn't know.

Jenny Abeling:

Yeah, most people have no idea that there's a homecare worker program in most states where Medicaid has been extended, expanded for long term care. So you go through homecare worker training you can be paid. Usually it's a consumer worker relationship when what the state is actually paying the Medicaid money to people, but just navigating that in and of itself and keeping somebody who, like they're making enough money to that it's actually good care and that people show up that's a whole nother issue is that people are paid so poorly, that like it's it's not easy to find somebody and keep them and be able to have the consistency you need, especially for somebody who has dementia or Alzheimer's. Like, you need the same person there who's specially trained and knows that person knows how to approach them, like all of the things but

Susie Singer Carter:

a family member, can they can they apply for this money as well? And is that is that in every state?

Jenny Abeling:

It's not in every state? No. So there's lots of unpaid family caregivers. So there's a huge movement of family caregivers of like, you know, there's 53 million family caregivers, a lot of them are unpaid. So those are people that quit their jobs and are not bringing in income and are staying home and taking care of their loved one in their home and they are struggling, and they are unseen and unheard.

Susie Singer Carter:

Right? And and I this is what I'm trying to educate as you are two people to say, you know, first of all, here I am taking care of my mom before she was on Medicaid. Right. And I was like, I had no idea that that even existed like it, you know, I'm trying to keep my production company going and be you know, a writer director and I'm like, truck juggling and my, you know, lived in a work live workspace where I had my office downstairs in the, you know, where everyone else did and my mom's going down there and there she is trying to I'm trying to navigate her while I'm navigating work. It's a nightmare. Yes. And it's a nightmare. But you know, and and, you know, I feel like there's it's so sad that there's stigma against caregivers as well from people that just don't get it until they're in it. Yeah.

Jenny Abeling:

Well caregiving is looked at as like an unskilled job. And this goes back this is like an educational moment. This goes back to like the New Deal days, where like when they started making labor realized they specifically cut out domestic workers, most of them women, and most of those people were caregivers. So from the get go, we said work that's in the house is not skilled work. And so now, this isn't seen as a career. This is like, oh, that's nothing you do. But your real job is this other thing. But if we looked at it as a career and as skilled work, then you'd probably be paid more, you probably have benefits, you probably would feel, you know, loved and supported by the general community, and you'd be part of the national narrative of like, what do we honor is good work?

Susie Singer Carter:

100%. Yeah, I mean, at least you can deduct your children and your taxes, you can't do that with a with a loved one that you're caring for, which is something I find absurd, at least right at least if you're not pulling in much money. How about let's get in some tax relief from it. Yeah, right. Totally. Yeah. Yeah. So So now, so now you are independent. And oh, my god, first of all, you're you need to do a TED talk on all this so that everyone understands how

Jenny Abeling:

it works. You told me that like, many times, No, it's true, because we need

Susie Singer Carter:

people to, you know, I'm doing it through my documentary with Don, and I do too. But and we're being as, as bold and as, you know, transparent as possible. And if people, you know, like, we've screened some of it too few people, and we're, you know, we're showing everything. And you know, my mom had a stage four wound, we're showing it, because I want people I didn't know what a wound was. I didn't know what a pressure sir was. I thought, you know, and I say it in the duct winter, I thought it was like when you're leaning on your elbow too long, and it's a little sore. And read, I had no idea that it can create a can a canyon in your skin? Yes. And what it what comes from it, and the you know, the avalanche that it causes, you know, and basically, you know, leads you to death if it's not being taken care of. And I had no idea of the, you know, the motive, the financial motivation behind not caring for somebody, the motivation for not wanting to, you know, to somehow claim that they're NPO out of nowhere. Oh, they're nucleo. That's right. That's what they did to my mom, and my mom could eat and drink fine. But no, she's NPO. So we, you know, we have to keep she probably

Jenny Abeling:

did, she probably didn't qualify for speech pathology.

Susie Singer Carter:

Exactly. It took him before it took me eight weeks to get one to get a woman to come in and do this and say, Nope, she can't swallow. Yeah, yeah. So yeah, so those yeah, those are the kinds of things that we were we're trying to, you know, reveal. And you I mean, we're, we're a team right here. This is a team this is, you know, and we're up against it, though, because people don't want to believe it. And they don't want to, you know, I don't know if you get this, but, you know, we get a lot. I mean, do a lot of talking about this. And it's like, perhaps your mom's facility, five star facility in Los Angeles is an outlier. And it's like, no, no, it's the opposite. If there is a good place, they are the outlier. Am I right?

Don Priess:

Yeah. I don't even say perhaps they don't even say perhaps they say it is? Oh, well, that's That's just you know, that's, you know, one off? You know, yeah, I

Jenny Abeling:

think yeah, yeah, I think like, the narrative is like, there's a few bad players out there. Yeah. And I think that narrative works really well, because then you don't scratch the surface of, you know, the dirty foundation, you know. So I think, if anything, the five star facility is the place that has the best care and probably has more staff, because they receive probably a lot of private pay, and Medicare residents, you know, and they probably keep people moving out of the facility, no facilities when you, you get past that 20 days, or even 100 days. So people don't even know this part is like you get 20 days of paid acute care out of facility and nursing facility, then you go into a copay status up to 100 days with Medicare. But most people can't stay acute because they can't stay skilled. You have to have a skilled knee, like you need PT or you need ot you need speech, you know, you have an IV, something like that. But once you become just a long term care resident and you need ongoing 24/7 care, that's when things get a little sideways, because you're there and you probably spent down under Medicaid, and you're getting a lot less care. And so I'd say it's not an outlier situation. When you have like one patient two, you have 14 patients to one caregiver, how could anybody there should be receiving the care they need? There's no way and a current staffing model, which obviously this is a very hot topic around the staffing mandate is that you know even that you're supposed to be providing that person with a quality of life and a dignified manner. With them having a freedom of choice, those are in the rules for home and community based services and for skilled nursing. That's right. But there's there is no way that you have freedom of choice when there is one caregiver for 14 residents, because that caregiver is running around the facility being like, I gotta get this person on a bed, this person has to go there, this person needs a meds, this, you know,

Susie Singer Carter:

100%,

Jenny Abeling:

and where's your CNA? You feel bad, because when you walk in the room, that person wants to engage with you and be like, Hey, how's your day? And what's watch the CNN with them? And you can't do that? No, there's

Susie Singer Carter:

no time. And what we've found as well, and I'm sure you've been, you're privy to this as well, is that if you do complain, and if you do, you know, there's really nowhere to go anyway. And they will say to you, and we you know, we feature people that have been evicted out of their out of their facility because they're too high. You know, they're because they talk because they ask, because they advocate. And and really, you know, I've also had that question, why didn't you move your mom to another facility? Where and are they going to take her because she has Medicaid? And they're going to say just like you said in the beginning of the conversation, there's no beds?

Jenny Abeling:

Oh, yeah. Especially if your mom had behaviors, oh, there's no beds available for her, you know, because everything is going in one. So in like a skilled nursing facility, you're taking in everybody. So you're taking in somebody who has a hip replacement, and is only going to be there for like 12 days, and then somebody who has like end stage Alzheimer's, who has, you know, terrible night terrors at night. So those caregivers are trying to care for all of those different people. And the people that are bringing in the people to the facilities, a lot of the time they don't care what the care needs are, how much time it's going to take. It depends on how much like money they can make. And that's just how this world works.

Susie Singer Carter:

Yeah, yeah, they're commodities. They're definitely commodities. And my mom didn't have any behavior. It was all just, you know, because I think that isn't as if you don't have behavior, and you're lovely, because my mom was lovely. Oh, you know, she just was, and I think it's easier to ignore, you know, you put them in a wheelchair because my mom was, you know, non ambulatory, after after given Depakote for no reason that that caused her to be non ambulatory and incontinent. That's a whole nother story. But you know, she's, it's easy to ignore, because she's so lovely. She'll walk behind beautiful, she'll say, and they're like, we'll get to her later. We'll get to her later. We'll get to her later. And meantime, you know, she's sitting in urine all day long.

Jenny Abeling:

Oh, yeah. Even when you do, like handover at a facility, you know, from one CNA to the next CNA or one nurse to the next nurse, you know, they do it. Transition handoff, right? And in that handoff, they're like, you know, bed two has behaviors and bed four needs to go to dialysis and Oh, bed five, they're good to go. They don't need anything. That's probably your mom. That

Susie Singer Carter:

was probably my mom. Because my mom was just so happy when people to talk and she's very she's very social. You know, God, you're gorgeous god Hello handsome. You know, she was like that, right? And so gave her like, she's, she's terrific. We don't have to bother with her. And I think I really do think that that's what happened and then it exasperated during, you know, COVID Because then they really were isolating everybody. And so you know, and then that's when the proverbial shit hit the fan and ever, you know, that's I you know, I wouldn't have known until you know, obviously I mean, anyway, but the point is, is that there is no place to go there is no other place to go and even if you're there we're how are you? What are you trading one one devil for the other devil? I mean, what are you doing and then you're disrupting this person. So you really are in a situation where your dog paddling for the one you love. And you're trying the best you can not to anger you know, not to create combative situations and I'm like you I'm Pollyanna I'm the girl that look was always the positive and very right on I mean, I'm like you know I'm I am I'm the have the disease to please so I don't want to hurt I don't want to disrupt the ship at all. But and he comes to a point like you are you're just like, Am I on another planet? Like what's going on? Watch my mom's swallow. She swallows look at her want to eat there. And they're looking at me and say no, she cannot we're not going to do that. And if you want to do that, take her home.

Don Priess:

And when you're in it, you don't and without this knowledge you don't know. You don't know the forest you are in. You have no idea that this is happening and why these things are happening. And when you aren't like CZ is very you want to trust the people who are wearing the uniforms and who have the stethoscopes and I noticing

Susie Singer Carter:

that stupid like my instinct was telling me something was wrong.

Don Priess:

Right. But you didn't know what it was. I didn't know what it is, you know, it's impossible to navigate. Yeah,

Susie Singer Carter:

yeah. And then you're playing whack a mole, because now it's starting. It's like a whole avalanche. And it's one thing triggers another thing to say that you're like, What do I what do I address first? And have an right and how do I address? Yeah, and and

Jenny Abeling:

if you start addressing things, then you become the bad guy at the facility, which I'm sure you became the bad guy at the facility. And we'd be like, Oh, my God, Jimmy Smith's family's here again, and oh, my God, they're causing a fuss and people are avoiding you? Yep.

Don Priess:

I mean, even I became the bad guy. And I was all I would do is ask for it. Where can I get a chair? And it was just like, you know, you literally, like, they would just stare at you and not not even answer you. You know, it was it was that, you know,

Susie Singer Carter:

I didn't even do anything wrong. I didn't do anything. Like, we were so nice and kind to everybody. I was like, What can I do to help you? What can I do? And like, you know, uh, just, you know, it was, it really was eye opening. For me, it was really the motivation. I could not not do this film, because I was blown away about how brazen the administration was, and how dedicated they were to that business model. That they lost all morality.

Jenny Abeling:

As Yeah, yeah. And, you know, for you, you saw that firsthand. And, you know, a really, really sad moment, in our time, or so many people were neglected, you know, and it's not like things, you know, it's not like the staffing changed immediately, during COVID. It just exposed COVID just exposed what was happening. And now what we need to do is day by day, we have to talk about it every single day, like we're broken records, so that people don't forget, because it's like, you know, during COVID, it was such a big deal. And not like all the essential workers and the heroes and all of that, but in reality is like, people have almost forgotten about it. So now that we've kind of taken, like, got a little transparency, we need to keep that going.

Susie Singer Carter:

Right. Right. So what do you think about what's going on now, in terms of, you know, the minimum staffing mandate that was proposed by Biden, and then now, you know, just in the last month, we have the senators and the nd lobby that are now you know, proposing a bill to stop that, under all circumstances. And, and I, you know, in mind you if you're, you know, listeners that that mandate anyway, was below the standard, it wasn't even at the standard that we that, that studies have shown that we need. It was below and now they're trying to fight that and say that if you, you know, again, it's the same rhetoric. If you do that you're going to, you know, that will kill the nursing home industry, there won't be enough money, they'll shut down and our, you know, our most vulnerable won't have any place to go. But that's bullshit. Because that there's plenty of money, there's more than enough money to staff properly.

Jenny Abeling:

Yeah, no, I, I always just laugh, like when you walk by like the front of the building, they have to post the staffing sheet. And the staffing is like one to seven people during the day. And so just when you do like we're forced into this situation, because we don't have you know, the other side, the industry side who's like, we're going to do the right thing. So then, you know, you've had to put these mandates in places and certain states, they have them, and now on the federal government, you know, side of things, they're going to mandate it for everybody. But the only reason that we're at this point is because we know that the industry won't do the right thing, because there hasn't been enough staffing. So now we're saying, Okay, you're going to be forced to do it, even if it's not at the level that advocates like us want to because we know it's not enough. But it's a start. And like, let's see if this can actually fix something. I would say what I have learned just from my time in this industry, is that everybody is beholden to somebody. So I would say, you know, on the federal government level, people are beholden to lobbyists, insurance, payers, pharmaceutical companies, there's a lot of people benefiting from this. Think about all the antipsychotic drugs that are being prescribed in nursing homes all over for people that never had a schizophrenia diagnosis before. It's wild how that works. So it's like, there's so many people that need to be removed from the situation. I would say we have the most pro care Long Term Care Administration than we've ever had ever. So I'd say first thing this election 2024 is like super important. We have to have, you know, Joe Biden to continue on because he has signaled and so many Different ways that hey, we are going to push forward and we are going to make change. We also have support from like senators like Warren's Senator Sanders, Senator Casey, these people they know. But the other side, they also are beholden to the industry and the industry is very strong, very, very between them and the pharmaceutical companies will,

Susie Singer Carter:

okay, according according to our partner, Rick mountcastle, who prosecuted nursing Yeah, the nursing home industry is is, is probably stronger than the pharmaceutical and he also prosecuted, you know, Purdue pharma and Abbott Labs for Depakote, and one, but you know, and he's in he reckons they're stronger. And you know why? Because they're because they're under the radar. That's why. And

Jenny Abeling:

I'd say another reason that they're so strong that people don't know is they have, they're smart. They have embedded themselves in state, local governments. They've also embedded themselves in the federal government. That's right, where they are relying on the industry people for functioning, like operational functioning, they serve as consultants. They're like the third the elder advocates that show up at all the meetings and the scheduling of meetings to have other meetings. They're, they're everywhere they show up, right? That's because they have time and resources to do it. So that you when you go to these meetings, I serve as a commissioner for senior services for the state of Oregon for the governor, when you go to meetings that are about long term care, or you hear hearings, there aren't consumers there because consumers can't show up because they are ones that potentially have so many barriers to show up. Caregivers aren't there because they need to work. Right. So who's who's there the elder advocate show up? And that's the industry. They're just embedded everywhere. So

Susie Singer Carter:

how do we fight that Jenny? How do we fight? Here's my idea. I mean, this is what I am proposing is that, yeah, we need we need a movement, we need to shame our the the, we need to shame the politicians that are that have allowed this and are benefiting off of these people that have embedded themselves within the system. And if we let them know, that we know, as a collective, as, as a major collective force of people, I mean, we're the only currency we don't we can't fight the Gobi, with with currency. Yeah, you know, cash what we can with power, and with a collect of the strength of the collective right. So I, you know, and in talking about California, and I say this a lot is like Gavin Newsom, you know, he's priming for for, you know, the presidency. So, hello, your constituency knows what you're up to Vixen, and stop doing it. And really, you know, Step up and stop taking, you know, campaign contributions from the lobby, which he does, and, you know, and got caught for one and ended up giving it to charity, not good enough, stop doing it all together. So the only way we're going to get that to happen, I think, is through a movement, like, you know, like mad like, like Black Lives Matter, like me to movement, yes. On the ground, the Paseo thing, per se. I mean, and and for all of the people that are caregiving, del participa participate, virtually, but it we have to go throughout every city nationally, we have to let the politicians know. And our federal and state government know that we know what's going on. And this is our money, Medicare and Medicaid is paid by who?

Jenny Abeling:

Yeah, it's, it's our money, it's our tax dollars are paying private equity company, to not take care of our family

Susie Singer Carter:

to hurt us, to hurt us. And it's, it's for all of us, because God willing, we're all going to get older, and we're probably going to need some long term care at some point. And God forbid, it stays the same. Because it's only getting worse, am I right? It's only getting worse. Because they're, you know, it's it's turning into the individual nursing home can't survive. Because they've got all these other, there's no competition anymore. So it's becoming monopolized. So that's my proposal because I, I just, I know that there are some good players out there, but how do we engage them for every, you know, like, the few amazing politicians that you mentioned? They've got a laundry this this this long? Because there's so few people like them. So you know, I think the public needs to take it we need to take this problem into our own hands. Because yeah, to

Don Priess:

the ballot box to to the we have to take it to the ballot box. We have to you know, it's more you know, we can shame these politicians. But if they're not in power anymore, and we're they're voted out, and they know we're gonna vote them out. Yeah, that's, you know, that's part of this too. And you know, It's so hard because these are the nursing home lobby. They're like a wolf in sheep's clothing, they're presented their image, their marketing is all we're here for the nurses, we're here for the residents. You look at their commercials, and you go, Oh, they're so nice. They're so great. You know, they're they really are looking out for everybody. And it's the complete opposite. And their marketing is brilliant. Yeah, really, because

Susie Singer Carter:

there's no transparency, there's no transparency. So, you know, it's like it's legal. It's legal corruption is what it is. Because it the way that the way the system is set up the way CMS has set it up, and the way and the lack of oversight, lack of enforcement, all of that stuff. It feeds that machine. So beautifully. And so the way to game the system is is, frankly, quite easy.

Jenny Abeling:

Yeah. And I would say, you know, Don, you're right is like, first of all, we should be demanding from our elected officials and politicians who want to run for office, what is your care platform? Like this is a huge issue. Like people want to talk about climate change, people want to talk about, you know, the war in Israel? What about what's actually happening to our families every single day? Like, what is your stance on care? And most of them would probably be like, I don't know, like, What are you even talking about, but like the majority of us care about this, one of the reasons that I think it's not such a big political issue is because we haven't successfully woven this subject into our cultural narrative. So that's another thing that I'm like really focused on. And I know you guys are focused on two, which is I started a production company called gal pal productions, I met a filmmaker last year, and she was like, if you don't tell the visual story in the medium that people are watching right now, and it get into the general population via social media, or whatnot. Nobody cares about that. So you need to weave the story of long term care into the cultural narrative, which is what I think you guys are going to do with this movie that's coming out is like, this is going to be the conversation starter, people are not going to be able to look away. So like, I think what we do next is we also have like people that are champions on social media, who are calling these people out, and being like, Hey, why did you vote the way you did, and like, we need to be kind of as aggressive as they are. And that's not my standard. But I think I'm at the I'm at the point where I'm so frustrated. Like, in my last job, one of the reasons I left was like, because employers were involved, and I need to be and be hauled into anybody. That is whatever the problem is, is that people are beholden, if you go on your Secretary of State website in California, you can look up your local politician and see how much money the local lobby has given to those people. And what you will see and what I have seen, is that they are giving to everybody. And when I tried

Don Priess:

to just on the surface, that's not what's happening underneath. Oh,

Susie Singer Carter:

yeah, because we weren't, we were going to show those those charts. But they don't have a list, we're gonna have a list of rolling list at the end credits, but it only shows part of what they get $5,000 It says 5000 It says your 2000 know, what we want to know is what's going on in the alleys because that's what's happening. Yeah,

Jenny Abeling:

and I think it's also like, you're you're not donating just because that person needs that $3,500 What you're doing is you're signaling to them that like, Hey, you're gonna do what I want. When we make these rules. When we enact these policies, you know, they are front and center being like, operationally, the employers could never do this. So they could operationally never handle those things. You're gonna bury the industry, which is just not true. You know, they will find a way there's no reason why people are coming into this, you know, industry right now, if people weren't making money, it's just not how that works. And exactly,

Susie Singer Carter:

no 100% Oh, my God, well, we're at an hour I just want to talk to you like all the time because you're we're also on the same page and we're so cut from the same cloth in a way you know, that I think that you're very similar in your heart that I am and, and, and it it pains me, but it also angers me too. And so, and that's what I said when I first started this project, I said I want to punch people in their hearts so that we can wake up their hearts and I want to punch them in the stomach so we can activate them to say hey, wait a minute, this is wrong. And you know, and there's two things that we always say is like, if you don't have empathy for our most vulnerable and for our elders, think about your own pocketbook and that you are paying this money and it's not going to go to you because they are extracting these companies are extracting over 60% of the profit. Yeah, how can a business run on less than, you know, 50% of their? I mean, it's ridiculous. But that's what's going on, if not more, that's all that we have found so far. But that's, and that's the latest. That's the latest research, then UCLA just did an amazing research of transparency and found these numbers, but, you know, that's awful. So in that's your money. So, you know, if, if that doesn't motivate you, I don't know what does so and, you know, also ages and we have to get over that we have to figure out a way.

Jenny Abeling:

Yeah, everybody is so siloed by age and ability. And that's like one issue on of like, of itself is when you go to a facility, it's just the same sameness. sameness. sameness, sameness. And so it's like if we supported people to stay in homes, if we paid people so that they wouldn't lose their income and we supported them in community, then we wouldn't we'd be a more diverse community. We're taking all the older people and all the disabled people and be like, you go over here. And like nobody's watching, you know, as opposed to being in your community where your neighbors are watching

Susie Singer Carter:

100%. Yeah, well, I am team. I'm Team Jenny. And yeah, no, I love you so much. I love everything you're doing. I want to I want us to, you know, always work together. Okay. Because I think that we're on the same path. And I want to, you know, help you as much as I know you're helping me. So let's do this. Let's do this. Thank you so much for everything you're doing for your brilliance. Your parents. I'm sure everyone's so proud of you. You're just a really brilliant woman, lovely person. You have a giant heart. And you deserve the best of everything you really do. Yeah.

Jenny Abeling:

Thank you so much for having me on your podcast. This is great. And you know, yeah, I just want to continue to chip away at it every day, just a little bit every day is the way forward. It has

Susie Singer Carter:

to be because it's too big. Right? Like if you think about the scope of it, I get I actually get nervous. It makes me Yeah, it's very scary. Can't wait for everybody this book to for you, you know, tell everybody the name of the book. So we know what's coming out. It's it's just it's long term. Tell me the name of the book. Yeah, so

Jenny Abeling:

the book is called a kid's book about long term care. And it's available on Amazon. It's available at Barnes and Noble. You can find it anywhere on the internet, basically. And I've teamed up with a few national organizations as well that are featured in the book and those organizations are consumer voice Caring Across Generations, SEIU, a lovely woman, if you don't know her Teepa snow and positive approach to care. She's fabulous.

Susie Singer Carter:

She's in our documentary.

Jenny Abeling:

I'm obsessed with Teepa and an intergenerational community called Bridge Meadows who are planning to expand nationwide soon, and is a really interesting model of care as well, where we do have a more diverse community like approach. So go find the book. It's coming out April 2, I'm so excited to share it with everybody. It's really a conversation starter for you and your family. It's

Susie Singer Carter:

so great. And we are we're like literally like walking parallel because we work with consumer voice, National Consumer voices, our fiscal sponsor, and our partner on this project. Caring Across Generations is like I I monitored a big chat at the WGA with for them. I love that organization. And what was the other one you said there was

Jenny Abeling:

SEIU is is the union that rights are across Long Term Care. So they're involved SEIU international I love them. And tipo snow. There

Susie Singer Carter:

you go. Yeah, and Teepa was in our in our documentary. I think I just love her. And so there we go. Okay. All right. Well, all right. Thank you so much. And I love you and I love you. Which brings us to what Dawn, there's so much

Don Priess:

love here to love her. We all love each other. There's love everywhere and that you know why? Because love is powerful. Love is contagious and love conquers all. So we thank everybody for watching and listening today. And please like follow do all those things and definitely like and follow Jenny abling she her work is truly amazing. Oh my God, in our dogs agree. Yeah. So we thank you and we'll see you next time. I love conquers all. It's take care of everybody.

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