BETSY WURZEL: Empowering Caregivers Through Passionate Advocacy

Betsy Wurzel started her career as a Talk Show Host at Passionate World Talk Radio and the name of her show was Chatting with Betsy. Betsy is also is an unwavering advocate for Alzheimer's caregivers who shares her own heartfelt experiences caring for her husband, Matt Sloan. Her stories are candid and passionate and truly exemplify the transformative power of love, humor, and community in the difficult landscape of dementia care.

Shifting gears, we confront the murky waters of hospice care—a field riddled with misconceptions and often misunderstood protocols. Misunderstandings about hospice care and the rights of patients can lead to inadequate pain management, affecting the dignity and well-being of those with dementia. Through our unvarnished discussion, we unearth Betsy's personal story of advocacy, emphasizing the critical role caregivers play in ensuring comfort and respect for their loved ones. This chapter serves as a poignant reminder that caregivers must be steadfast in their rights to demand the best care possible.

Finally, we tackle the systemic challenges plaguing senior healthcare, from understaffing and inadequate training to the pitfalls of profit-driven care models.  Betsy guides us through a sobering exploration of these issues, pointing out how they result in inconsistent care for vulnerable populations, like those with Alzheimer's. With a call to action for more compassionate and consistent caregiving, she stresses the importance of prioritizing people over profits, advocating for a system that values quality care above all. Through this inspiring episode, we aim to empower caregivers to fight for the dignity and quality care their loved ones deserve.

Connect with Betsy:
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Chapters

• 0:01 Innovative Dementia Care Solutions
• 19:27 Challenges in Understanding Hospice Care
• 24:47 Advocating for Better Hospice Care
• 32:34 Consistent Senior Healthcare Care Importance

Transcript

Angela Fairhurst: 0:00

Hi. I'm Angela Fairhurst, founder of Geri gadgets, a revolutionary solution for dementia care, inspired by my personal journey caring for my mother with dementia, I develop patented sensory tools that engage loved ones, reduce anxiety and create joyful moments without medication, providing much needed relief for caregivers. Geri gadgets currently come in three silicone buckets with activities like flower arranging, shape sorting and tactile fidgets with more in development. Each Geri gadget is designed to stimulate the senses, fostering connection and communication even at advanced stages of cognitive decline, non toxic, built to last and dishwasher safe. Geri gadgets transform caregiving by promoting engagement, improving quality of life and offering caregivers a respite from constant supervision. Discover how our innovative products can bring joy and meaningful interaction to your loved ones with dementia, while easing the caregivers burden. Visit Geri gadgets.com to learn more and start making every moment count

Don Priess: 1:06

for a limited time, you can get 20% off your next order of Geri gadgets by going to www dot SSW, ww.com, Jerry gadgets for dementia and enter the special love conquers all's coupon code, LCA, 20 get 20% off Jerry gadgets today, when the world has got you down, Alzheimer's sucks. 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, 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 singer, song, sing a song.

Susie Singer Carter: 2:04

Hello everybody. I'm Susie singer Carter,

Don Priess: 2:07

and I'm Don Priess, and this is love conquers all. Hello, Susan, hello,

Susie Singer Carter: 2:12

Don up. We're we're like, we're fancy. Today, we're doing two podcasts in one day,

Don Priess: 2:18

back to back, with five minutes open in between,

Susie Singer Carter: 2:21

like, we're like, jet setters or something like, Yeah, but, or something like that, something like that, we're having a good day. We're talking to real, like, great people today. So, but what else is happening with you? Let's get along.

Don Priess: 2:37

Anything good? Yeah, no. Well, it was, it was like was last week, I finally decided to take three day vacation. I don't know the last time I took a vacation, and we have some friends up who have a beautiful place up in arrowhead, and so I was so excited, and we're gonna play some golf, and there's a boat, and I drive up there beautiful, spend the day on the boat, blah, blah, blah, have a nice dinner. Get up the next morning and I'm sick as a dog and have to just drive home. That's my that's my fun, exciting life, and nobody, somebody does not want me to go on vacation. Thank you. The end, yeah, you summoned me back. Come back. Sorry. There's work to do. There's work to do. Sorry. So there you go. That's my exciting jet setting Murphy's Law.

Susie Singer Carter: 3:39

I'm excited about our guest today, I am too. I've known, first of all before. I won't give it away, but I'll just say that I know her now from our caregiving community, and she's become like a soul sister to me. I just love her so much. And she's also in our documentary, No Country for Old people too and but we haven't had her on the show, so I thought, how is that possible? And

Don Priess: 4:04

so here we are now. It's possible. It's possible.

Susie Singer Carter: 4:08

So Don Why don't you, why don't you give her the illustrious introduction?

Don Priess: 4:12

I will do that right now. Betsy Wurzel is a retired licensed practical nurse and a caregiver to her mother in law and her husband, Matt, after he was diagnosed with Alzheimer's disease while caregiving for Matt, Betsy fought against the horrors our broken health care and long term care system, and now she's become a fierce advocate against ageism and ableism, especially those with dementia. Her enlightening podcast, chatting with Betsy is designed to embolden caregivers through their journey covering the taboo topics which most people are afraid to talk about. She has also created a Facebook support group hashtag kick Alzheimer's ass movement, which welcomes all dementia and is all about support, education and inspiration. We love her spirit and passion and. You too will love the one and the only. Betsy Betsy Wurzel, hello, Betsy.

Betsy Wurzel: 5:05

Hi Don Hi Susie, thanks for having me. Sorry. Connection problem.

Susie Singer Carter: 5:12

That's okay. It's called a podcast, and so we're doing gorilla production today. Look what I'm doing my phone because not connect. And so we're doing this the old fashioned way. I'ma hold it up to my microphone and how we're doing it, folks. But you know what? It's all about the message and what we're talking about the conversation. So it's good, right?

Betsy Wurzel: 5:39

That's right, that's right. So it's all good.

Susie Singer Carter: 5:43

So I'm gonna, I'm gonna, we're gonna try. This is like, take 17. Let me, let me, let me. Tell the audience I wanted to talk. I wanted to talk to Betsy about her journey with as a caregiver, and with her husband, Matt, and who had Alzheimer's, and Betsy was there from the beginning through the through the end, all the way, and continues to advocate for him in His honor to this day. So you know, where shall we begin, Betsy, with your journey.

Betsy Wurzel: 6:26

Well, thank you again, Susie and Don for having me on and you know, Susie, I love and admire your work. You are a true Jersey gal after your mom, that's for sure. How I became an advocate, is something that surprises me still, because I was always very quiet and shy. People don't believe that, but it's true. But when you have to fight for someone I had to fight for Josh, who has a cognitive disability so that Josh story me on my road to advocacy, to stand up

Susie Singer Carter: 7:10

for people. Josh is your son, right? Josh

Betsy Wurzel: 7:14

is my son, yes, and I had to fight for him and to get the services that he is supposed to get. And then, when Matt was having memory problems, it annoyed me that doctors didn't listen to us and they just blew us off. And when I think it was 16, 2016 or 17. When I brought a smartphone, I went in my car, I said, Well, no one's going to listen to me. I might as well go in my car and just let it rip. And so I went in my car and I started doing videos on dispelling the myths that Alzheimer's, the old people's disease. Nat was 56 the diagnosis, so that was a myth, and showing that's picture, and talking about caregiving. And then I would post that in different groups, caregiving groups. And I was really,

Susie Singer Carter: 8:20

you are pioneer. I mean, you know, now it's like, it's like, that's the standard setup is in your car, like, I, you know, to you, kind of like, we're a pioneer in that. Because now everybody does does this. Yeah, that's great. Yes,

Betsy Wurzel: 8:39

that's funny, because when I look at Instagram, I say people are in the car. I did that seven years ago, yeah, always ahead of my my time, and I was shocked about the response that I received, and I always wanted someone to discover me, or at least have me on their show, because in New Jersey I went, I contacted the news stations, radio stations, nobody would even respond to me. And lo and behold, in 2018 Jeannie White, who station manager pastor, will talk radio network saw one of my videos and asked me to go on her show, to be interviewed, and I was shocked when she asked me to speak weekly. And back then, Suzie and Don caregivers were not talking publicly. Nobody was speaking up, and it was really hard to get caregivers to come on, to speak up. There weren't caregiving podcasts back then, no, but you couldn't even find information back

Susie Singer Carter: 9:49

then. So true. It's so true because, I mean, when I start, when we started, love conquers all, which was 2020, there was like, I. Honestly, I had to search to see what, you know, who else was out there, because I didn't want to, you know, do something that maybe other people that, if the market was flooded, and I myself couldn't find resource for my mom, and now, there's there, you know, there's plenty now, yeah, you're right. There was, there was, it was really hard to get resources. Just Yes, just that little, you know, seven years ago, you would think, yeah, a lot has changed. You're right.

Betsy Wurzel: 10:31

So I'm really happy to see that people are showing their journeys. They are showing their their faces, their names, caregivers are coming out of the dementia closet, as I call it, people with dementia coming out of the closet. And this is a dream come true for me when I see this in social media, and I have to say, like, I think I was a pioneer, because I would talk about it, and my friend Marcia Burr, she would say, you know, we got to share our stories, and that's what we were trying to do. And even though people could come on Jeannie show and be anonymous, it was so difficult getting people to come on, and now it's like the market is saturated, please. Podcast, but I I'm very passionate Susie and Don about with my show, chatting with Betsy is providing people at resources that I wish I knew about when that was alive, or that I wish were available when he was alive, which they a lot of my resources weren't available five years ago. And you know, just even like you had nurse penny on, I wish there was hospice. Nurse Penny five years ago, talking about hospice, what to look for, how you should pick out a hospice. I wish I had that information.

Susie Singer Carter: 12:06

We just spoke to another amazing person in our in our community, PK bevel, who, who is a dementia doula for a death doula for people with dementia. And you know, there's such a difference in in, in how people exit this world when they have dementia and Alzheimer's, which you experienced with Matt, and it wasn't you did not get the support you needed, right? Oh,

Betsy Wurzel: 12:33

absolutely, I did not whatever hospice is supposed to be supportive, helpful. I had the hospice from hell,

Susie Singer Carter: 12:43

complete opposite. What happens? Where do you think it went wrong?

Betsy Wurzel: 12:48

It went wrong from the very beginning, when they asked me, they said, Can that talk? And I said, Yes, he talks. And the nurse who did the intake for hospice said, I'll pretend I didn't hear that so he could get on hospice. And the hospice nurse who came to visit, she said, Matt talks. I said, Yes, sometimes he talks. She said, Well, if he talks in three months, he can't be on hospice.

Susie Singer Carter: 13:23

What I said?

Betsy Wurzel: 13:26

I said, You mean to tell me that my husband, who needs 24/7, care, hallucinating, needs total care, can't get hospice because he says something clear when you're here. That's ridiculous. And she said, It's not us, it's Medicare, and this different protocol for hospice with a dementia client than with someone who has cancer.

Don Priess: 13:54

Why? So you're not, you're not allowed to talk. To be able to talk, you're that means you're not dying if you talk, yeah, I

Betsy Wurzel: 14:02

guess. And then I've heard of this in the caregiving community, Susie and Don of people who were denied hospice because their loved one talked when the person who evaluated them was there. And I told the hospice nurse, don't worry, Matt won't be here in three months. He's dying. She said, he's not dying. I said, Yes, he is. Oh, he's still eating and walking. And I said, I'm telling you, get your head out of your textbook. Think outside the box, because Matt is terminally agitated because he is dying two weeks later, and that was dead. Wow. They did not believe me that he was dying. They didn't believe that I was they thought they tried to get while talking about gas lighting, as you talk about in one of your your shirt. Was that I saw her might have been No Country for Old people. I think you talked about gaslighting the social worker has a social worker tried to gaslight me. She accused me of not giving medication properly. She was talking down to me, and I put her right in her place because you don't disrespect me and get away with it. And I told her, point blank, you got to change your attitude and talking to me because I'm not stupid. I'm a licensed practical nurse. I gave up medication for years. I'm telling you what you're giving that is not working, and you're giving more the same, which is insanity. And then she accused me, had the audacity to say to me, I call up hospice too much. Nobody calls up as much as me. I said, Well, I'm my husband's advocate, and I will call up as much as I want until there's a solution to the problem, and you're not giving me a solution. And the witch had the nerve to tell me, when I told him that complained of a headache, she had the nerve to tell me he couldn't possibly have a headache. Oh, my God, I want to punch her so bad. I did. I wanted to punch her so bad, but I'm not going to jail for anybody, right? But I wanted to to really, she was so sarcastic and nasty. And even at the hospital, because Matt went up to the hospice unit in the hospital, if I had a fight for that, because myself, he fell twice, Susie and Don and nobody would come out to assess him. Nobody would come out.

Susie Singer Carter: 16:51

You see, Betsy, it's so weird to me, because, you know, it's like, you know your loved one. And I, as I knew my loved one, right? And I had the opposite, whereas they were trying to overdose my mom with drugs, as opposed to giving her, you know, what she needed. And you know, I personally didn't think my mom was dying yet, which she didn't it. You know, from the time they put her into hospice, she the only reason why she died six months later is because they refused to to treat her stage four wound and allowed it to just, you know, allowed her to succumb to it, basically. So I was trying to fight for my mom to have the right to leave the this earth when she wanted to. You are trying to fight for the right to, you know, leave the same thing, which was when you knew he was ready, and I said I would know when my mom was ready, and and so, and this is the misunderstanding of our of our health care system in terms of dementia and Alzheimer's, is that, you know, it's too easy to manipulate the system to benefit them. In other words, I mean, I'm not, I don't know if, for a fact, this is what was happening to you and your situation with Matt, but you know, they, they may have seen him as being able to bill for, you know, a longer time, you know, is saying he's not ready to die. We will keep him alive at least for six months so we can bill, whereas my mom, because she had high comorbidities, they were like, Let's push her out the door quickly, because it's going to eat into our profits. Not to be crude, but that's what happens.

Betsy Wurzel: 18:39

It's It's terrible. My medical doctor, I don't know this is true, Susie and Don but my medical doctor told me that, you know, Medicare does pay hospice, and when they don't use services for that person, they get to keep more money, right? And I couldn't get anyone to come out to examine Matt. Actually, one night he fell, and I had to wait for our son to come home to help me get him back up, because nobody would come out.

Don Priess: 19:19

Well, that's because I would eat into their profit. Yes, they would. They would then have to, actually, you know, pay for that, and that would eat into their profit. And then, and again, a lot of this also comes down to the the confusion that most people have. Even the experts of what hospice is, what it's supposed, you know, like with Susie's mom, they, you know, the oh, well, in hospice, you don't get treatment for anything. Well, if it's for the comfort of their patient, then you get treatment, right? And and, and easing a bed sore would be for comfort. It's not to cure her, but they wouldn't even do that and that. So there is so much confusion as to what hospice actually is, and I think that's something that you ran into also,

Susie Singer Carter: 19:59

and also. What is not you know, well advertised, is your rights as a whether you are the appointed caregiver or you know of a of a person or the person themselves, you have rights to say what you want. It's up to you. You know, they adopt. They can advise, but they don't have the right to make the decisions for you. You it is your right, right,

Betsy Wurzel: 20:29

and to think that people with dementia don't have pain, they're human beings, right? And you know, I said to social worker when that was in the hospice unit, and I she had a meeting with me, and I told her, I said, I'm telling caregivers, we're not taking this crap anymore. You need to listen to us when we tell you someone's dying, they're dying. When we tell you someone's in pain, they're in pain. I said, Who are you to tell someone that somebody can't be in pain. Do you know what a dying brain feels like? I have migraines. I can just imagine what a dying brain feels like. You We don't know. And Matt, very clearly, said to me, I have a headache. Why wouldn't I believe him? Matt never complained of pain, of course, I believed him. I gave him Tylenol.

Don Priess: 21:26

Yeah, you don't stop being human. You don't stop being human when you have dementia, it's like you're still a human being.

Betsy Wurzel: 21:34

Exactly, Don and I actually have seen this. I worked in a state facility for the severely disabled, and the same thing there, the doctors would not prescribe pain medication with these clients having cancer, because they think, because they're handicapped disabled, that they don't feel pain. I mean, it's just as a right. And I always fought for the patient, you know, for that, for the client. And I, you know, I believe in treating people the way I would want my loved one treated, and that's how I treated my patients and clients, and I worked in as a nurse, and I was just so traumatized by what I went through and having to fight for Matt had dignity at the end of life, and when he fell, that he fell on a Sunday morning, and it was before Christmas, and I called that, that hospice, and I said, I did that medication. Matt fell out of bed. He talked all night. It didn't work. Are you going to come out here and assess him? The nurse said, I don't know. I said, What do you mean? You don't know? I said, Well, let me tell you what I know. I'm going to call you every minute till you do know what you're doing. And in between calling you, I'm going to call on Medicare and I'm going to place a complaint, and then I'm going to call up your Regional Director and I'm going to place a complaint and remove math in your hospice. Oh, don't do that, Mrs. Sloan, so is my married name? I'll call him my nurse manager. And then she said, Oh, do you want Matt to come up to the hospice unit? I said, Yes, I'm having chest pain here, right? I need help. Would you believe Don and Susie after Matt had a one to one, because he was so agitated. And they had a nerve to say to me, oh, Betsy, now we see what you're talking about. Why would I make it up? Righ

Don Priess: 23:52

to, what end to what end?

Betsy Wurzel: 23:55

What's like, what? What's the purpose of me making it up? And then the chaplain who never came to visit us at home, happened to see me, came into the room, and I told her that I was very upset that I think that Matt suffered more than he did have. Of course, Matt was doped up. He'd just gotten his cocktail of drugs. And she had the nerve to say to me, Well, he's not suffering now. And I said, you're going to argue with me whether he suffered or not. And then they had the nerve, Susie and Don, when I look at it now, I had to have a sense of humor. They actually had the nerve to tell me he would be going home on the following weekend, and I said to the other social worker, I said, go home. I said he still is getting medication through the IV intravenous, and he's still agitated. So you tell me? How is he going to go home? She said, calm down, Betsy, we'll know, monitor him and we'll give him medication. By now. I said, You know what, Mary? Let me tell you something. I will monitor him myself, and if I don't think he's safe or discharge, I refuse his discharge. I will refuse to take him home because it's not safe. And she said, You can't do that. I said, you want to try me. Just try me, because I will call it Medicare. I know my rights and I can refuse an unsafe discharge. I says, You have no idea who you're talking to. And I met with the director of the hospice, because I had called her, told her I wasn't happy, and she had the nerve Suzanne Don to say to me, Oh, I'm sorry, we apparently dropped the ball. I said, my husband's not a ball. He's a human being, and you wouldn't accept this treatment. Why do you think I should accept the treatment that you gave my husband, and when I they told me that he would be going home or could be going home, I went into the director of hospice, and I said, if Matt goes home, which I know he's not going to I said, if he goes home. And so help me if an RN doesn't come out when I need one, my next call is to your CEO of this hospital or this company, and she handed me her card. She said, You call me 24/7 Betsy, if somebody doesn't come out,

Susie Singer Carter: 26:35

let's see. Here's the thing, listeners like you shouldn't have to be you shouldn't have to fight that hard. Exactly. You just shouldn't. And that's not, that's not, you know, we're already vulnerable. And like you said, you were, you weren't feeling good from all the stress. And you know, just having to take care of it. And you know, we all know that caregivers compromise their own health when they're caregiving. It's just, it just part of the of the of the job, right? It happens, and we have to really take care of our own health. Otherwise we can. We can get sicker than the people we're taking care of. And so, you know, it, it, it shouldn't have to that pressure shouldn't be, you know, have to be put upon us. And you happen to be, as we said, fierce and fearless. Many people aren't, and many people also, when someone walks in with a with a white, you know, scrub on or, or, you know, because nobody wears white coats anymore, right? But when someone comes in with a doctor's badge and or a nurse's badge, many people just go with the flow and go, Well, that's what the doctor said. You know, it's the expert. They're the expert and, and, you know, you it should be that way. You should be able to rely on that expertise, but as both you and I know from personal experience, that is not the case in many, many, many situations. So and not everybody has Betsy as their wife or daughter or sister or mother and so, you know, we're if it, if we're in, if it's us, and we don't have a Betsy, we're up shits Creek.

Don Priess: 28:30

You're screwed and and the thing is, so much of these decisions are not being made on a medical basis. They're maybe made on a financial basis. Money is driving the decisions that are being made. Some of these people, they're not they're being told what they need to tell you. They're not even making the decision. And it's a one size fits all model where, basically, you know, if you're in this category, they don't look at the individual and what their individual needs are and situations and making decisions on that. It's like, if they fit into this box. That's the decision that's made, and that's usually because of the finances, and so that's, that's what we're up against, and that's what you were up against

Susie Singer Carter: 29:10

totally. And I mean, that's and that is, it's what I'm trying to it's why I wanted to have Betsy on to talk about this, you know, which you do in our documentary as well, because it's just such an important topic that, you know, the ages of enable ism that accompanies Alzheimer's and is so prevalent in our in our society, but but in our health care system and and it's really used to their benefit, you know, to be able to play into those stereotypes so it whatever suits them, like I said earlier that you wanted more medication, you couldn't get it. I wanted less medication and more care in terms of of what of the comorbidities that they had caused. Caused, and I couldn't get that. It was like, no, let's just drug her till she can't you, basically, till she's a zombie when she wasn't what, because they don't want to take care of her wound and what? What accompanies those kinds of wounds, whereas you are. And I knew my mother well enough to know that she needed that care, whether or not she was going to die. She needed that care. Why would you drug Why would you steal the last whatever months of her life, torturing her

Betsy Wurzel: 30:34

Exactly? Why can't there be dignity and make someone comfortable that that's what they, you know, want. That's why I wanted for Matt. I didn't want him to suffer. I want.

Don Priess: 30:48

That's what hospice is for. Yeah, that's what hospice is supposed to be,

Betsy Wurzel: 30:53

you know, a source of comfort. And the social worker said to me, oh, Betsy, you fought hard for Matt to come up here. And I said yes, and I shouldn't have had to. I shouldn't have had to fight that hard to be all stressed out and aggravated. No, and that's why the holidays is like the worst time for me, because Matt was dying from Thanksgiving through he died New Year's Day 2020, and I knew that when Matt went up to that hospice, he wasn't coming home, that hospice was so incompetent they thought he was just going up to get medication adjustment. That's how incompetent they were, and that

Susie Singer Carter: 31:33

was in the hospital, right? Yeah,

Betsy Wurzel: 31:36

the hospice we had came out from our local hospital, which is part of a huge medical health care system in New Jersey, right? I won't say the name, but it's a huge medical system, right? And their hospice was absolutely terrible. Actually, I fired the the aide. One time they the aid came. I had left the room for like 30 seconds, and that was kind of next thing I know, he's screaming. And Josh told me that the aide lifted that up abruptly underneath his armpits. And then, of course, he was agitated. Then she had the nerve to tell me make sure Mr. Sloan is medicated when I come I said he was medicated for your information, and now I have to medicate him again, because you agitated. It.

Susie Singer Carter: 32:32

It's a vicious cycle, because that kind of, that kind of caregiver that you're talking about really comes again is it's a it's a result of our of our system, because it's understaffed and under trained. And people who went into this career, you know, vocationally, who had a desire and a passion for it, are not staying because they can't do the job that they want to do, because they're not paid. Well, they're overworked, and they're just abused. They're abused. So you get these people that are doing this as a side gig, and they don't really care, and they're in it to for their hours, and then they're gone. And that doesn't work for people you can't you need consistency when you're dealing with people, especially who have Alzheimer's, who's you know, where you know you can't just have these aren't these aren't widgets. This isn't like you're washing the car. This is your your you're taking care of a human being. And all of us are uniquely different. And you know, one person might not you know, mind being handled a certain way, and another person will, but that's what consistency of care can can deals with, and that's where that's so important when it comes to, you know, keep keeping the right kind of staff. And if we, if we continue to allow this business model that is profit over people and is extracting, you know, as much profit as they can from the system, we will continue to get the minimum care for ourselves and for our loved ones,

Don Priess: 34:23

we'll be right back.

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Betsy Wurzel: 35:24

I filed formal complaints with the New Jersey State Health Department and with Medicare's quality insurance department.

Susie Singer Carter: 35:34

What happened? What happened? Did you get any responses?

Betsy Wurzel: 35:39

I did get a response that they didn't see any violations. There was no sub standard of care. And I said, Are you kidding me? Someone falls twice, and nobody comes out. And that's not sub standard care.

Susie Singer Carter: 35:54

Unbelievable. It's not unbelievable, though. I say unbelievable, but it's not unbelievable because you're you. I hear this. I've heard this with so many people that I've interviewed. You know, for the documentary, on our podcast, it's, it's the complaints fall on death, death ear, death. That deaf ears. There's, there you go. Freudian slip on deaf ears because there isn't enough. Again, there's just not enough motivation or incentive to make do anything about it, you know. So, so it's basically, it's go through the motions. It's, it's, it's all performative. And that's why things really need to change fundamentally, because the oversight stinks, the enforcement stinks, and you know, the regulations, which are, there are, are just performative. They really don't mean anything. They're they pacify, they mollify, you know, the public. So the public thinks, well, there are, there's, there's regulations, and, you know, there's, there's staffing regulations that there are, but nobody's adhering to them.

Betsy Wurzel: 37:09

That's very, very true. Even the hospice doctor said, you know, his hands are tied, and they had to follow strict protocol for someone just to come up to the hospice unit, and even if they do follow the protocol of Medicare thinks they made a mistake, Medicare will take away their payment, right? And it's really sad, and it's really sad that people think that they could treat someone who is mentally disabled or has any kind of dementia, any way they want, and it's okay. Well, it's not okay when it's my loved one, because I'm a mama bear, and they saw that I actually had people coming into the room. They pretended to see how Matt was doing. They really want to see who the big mouth was.

Susie Singer Carter: 38:04

You're lucky. I mean, I am. I have a different tactic. You know, I was never I always was. I tried to not upset the apple cart too much, because I knew I could feel the retaliation, and I could feel them like, I mean, it's not even feeling it was obvious. I mean, I'd walk into the facility and I got just stink eye from everybody, and I didn't yell ever. I was like, so respectful, but I didn't I was relentless, but I was respectful and kind, and I still got retaliation from, you know, the from the administration, and I got a lot of lip service, and I got a lot of gas lighting. So it doesn't, it doesn't surprise me, you know, I mean, I got locked out of the room for God's sakes they, I got to the point where they were like, you're not allowed in the room when they were changing my mom and I was like, What do you because

Don Priess: 39:06

they didn't want you to see the bed sore. Yeah, they didn't, yeah, they didn't. Like, what

Susie Singer Carter: 39:10

do you mean? I'm her conservator person. I am her legal, you know, Guardian, yep, well, you have to go out of the room by they would literally, like, forced me out of the room, and I it was like, I had to, you know, choose my battles, as it were. But God, we shouldn't have to go through this. So what do you think? The answer is,

Betsy Wurzel: 39:37

you know, I think it's better. I should be better training, better education, and I really hope that hospices globally will start to change their idea of what terminally agitated looks like with someone who has younger onset Alzheimer's not. Everyone's going to fit that picture of someone dying in a bed. They could be walking around and dying, and they need to start realizing this. They probably will, in about five or 10 years, say, oh, you know, people with young onset have different symptoms. When they're terminally agitated. They need more funding, they need more education, they need more staffing. And staffing has always been a problem. In hospitals, I could tell you that. And nursing homes, it's always been a problem, right? And I can testify to that because I worked in them, and I saw what went on, and it's terrible. Better, I think better education, better, much higher staffing.

Susie Singer Carter: 40:52

And I think too for listeners, is that, you know, it is that bias against, there's a there's a fear that comes in, a bias about Alzheimer's and dementia, and people are repulsed sometimes, or so frightened that they can't look at it and it and so It's it's like, that's why so many people with that disease are hidden away and and, and people have somehow accepted it, that it's okay, and, and, you know, convince themselves that that because of this Disease, they're not really feeling it. They're not really experiencing pain or sadness or loneliness or any of the the human things that make up a human being, so and and so I think that also I'm on my soapbox right now, but I think that also a lot of a lot of this responsibility relies on the public to say we care. We give it. We give a shit about people who, even though they may be dying in a year or two, will so May. So might you. So might all of us. We don't know what's going to happen to us. So life is precious when you have it, and everybody deserves the care and and respect and dignity like you said to to to get what they deserve, which is, you know, if you paid into Medicare and Medicaid your whole life, you deserve that money to go to your care and how you want to Use it. No one's telling you how to spend your Social Security. That's your money, right?

Betsy Wurzel: 42:46

That's right, that's right. I think doctors and nurses need to listen. And if I could give any advice, I would say, you know, educate yourself, hire someone if you could afford it. To help you navigate hospice, plan ahead. Start looking into hospice. I normally put it all off until I couldn't anymore, because I was at the end of my rope, but I didn't know about doulas weren't really a big thing five years ago, four and a half years ago, true.

Susie Singer Carter: 43:26

That's great advice. That's great advice because I did the same as you and I think that we, you know, we, we do that for a lot of reasons, right and and for personal reasons, and for our own fear and our own, you know, denial. Sometimes I'm speaking for myself, but you know, I was, I didn't want to anyone to go down that road, yet, I didn't think my mom needed it. But I think it's better to be prepared, like you said, and and, and know what you're what you're getting into before you're in in a crisis situation where you have to make rash decisions and you can't make an intelligent decision unless you unless you've done your homework, Right exactly?

Betsy Wurzel: 44:15

I'm thankful that right after Matt was diagnosed, you know he did a living will. So I know that. You know, he didn't want a feeding tube. He wanted, you know, comfort here, and that's what I you know, that's what he had. Matt had lost so much weight his last year of life. The doctor, neurologist said, Oh, well, Matt could have the feeding tube. And I went, why? Why would I want to prolong his agony? Right? No, I said, No, he's not going to have a feeding tube. And I really think that everyone should treat people with respect and dignity. No matter what they have and who they are, we're all human beings. And that's the thing that is so missing sometimes from medical personnel, is treating people with respect and dignity, and I've seen it when I worked in the state institution. I talked to the clients, and they would say, Betsy, who are you talking to? I started talking to the clients. Don't you know they can't talk, because I know they can't talk, but they can hear, and they're human, and they want, like people, talk to them, they smile, they laugh,

Don Priess: 45:45

and they can tell you're they can feel you're there. Just the fact that you're there is makes a huge difference. They understand intent, they understand caring, and they certainly understand not caring. They, you know, they'll, I watched, you know, Susie's mom, depending on the on the nurse that came in, how she would react just physically to this either positive or negative presence that came into the room, yeah, and, and I think that, you know, a lot of that comes with, you know, education within, you know, it's not only educating ourselves that, hopefully, that the medical field educates people that this isn't they're not widgets. They are not they are human beings. And so many, there's so many lovely nurses and doctors who really do care. And the difference is amazing. But there's so many where they literally, I watched Susie's mom being handled. And we actually have some of it on video, and it's in the documentary as if she was a piece of furniture. Yeah, and my mom's vacation, yeah,

Susie Singer Carter: 46:50

my mom's crying out in pain. I'm going, she's, you're hurting her. You're hurting her. She's like, I Okay. I mean, like,

Don Priess: 46:58

or nothing or no. Response, yeah. And, and so, so is there anything that you feel that you would have done differently along your path? I mean, you don't want with no regrets. Just saying, now that I know what I know, is there something that you thought you could have handled differently?

Betsy Wurzel: 47:17

Yeah, what I would have done was, ahead of time, look at different hospices,

Don Priess: 47:24

education, yeah, yeah, yeah, but you don't even know that that's an option. Susie didn't even know that there was an option for another hospice, or she could quit hospice. She didn't know any of that.

Susie Singer Carter: 47:36

But that's why we're doing this doc, this document, and when doing this episode is like, I want people to know you have a choice. You're not stuck with the with that hospice, there's other hospices. If you don't like what's going on, you need to speak up. You know your person better than anyone else. If someone tells you something and it and you get that pang of like, Hmm, you know, listen to it. You're you know better. They don't know better. They they know, you know, medical things that that are like by the book, that's it. But when it comes to common sense, you know, I mean, I, I, we have, we have to wrap up. But I just want to say, like my, I had a friend, a girlfriend, whose mom was in the same facility as my mom. And before my mom passed away, her mom did not have dementia, and she told me she would, they're putting her mom in hospice. And I said, Oh, I'm so sorry. You know what? Why? And she said, I don't know. She's they just said she's, you know it, she's ready for hospice. And she had, she had came from out of state to be with her mom, and she said to me, we had coffee. She said, My mom was saying to me, am I dying because I because she didn't she could talk. She was like, Am I dying because I'm not ready to die? And I told my friend, your mom's not ready to die. She's telling you, I mean, she doesn't want to die. She died two days later because they, because they medicated her so much. And so that's the other that's the other end of the spectrum. So what I'm saying, and I'm telling you this because I'm saying, listen to your loved one, if they can talk, listen to your intuition, if they can, yes,

Betsy Wurzel: 49:24

yeah, definitely follow your gut instinct, which I have always done. That's how I knew that Matt was dying, right? I just knew it, but they didn't believe me, and that's the thing that they need to listen and respect the family members. And just want to tell the audience, you know, there's a lot of good hospices out there, a lot of nurses and doctors out there. I'm not knocking them. There's a lot of great people in profession, just like anything else, there's also. The bad apples, and definitely do your homework ahead of time. It was a little I knew I could change hospices, but it was really too late for Matt, for me to change and this was local. And then I know that some hospices Medicare doesn't approve of and so they have you over the barrel. You have to go where they're going to pay. She can afford out of pocket, right?

Susie Singer Carter: 50:32

And I want to reiterate too that thank you for sharing your story. Betsy, I want to reiterate that there are good hospices. There are great people, as I said before, but, you know, the system is is geared towards making it very difficult for those good people to do their jobs the way they want to. And and the people that are and the and the hospices that are, you know, family run or non profit, many of them are doing the best job they can within the system as it is. So we need to make it easier on them, easier on the good on on the frontline providers that want to do a good job and that, you know, and so that they are not feeling this moral injury, which is really destructive. And many, I mean, many doctors, many nurses, are dying of suicide than ever before. So, and they're, they're very, very conflicted, and it's just a vicious cycle. So again, it all comes down to the system, and but in the meantime, everything that Betsy said and that we talked about, I hope, will be helpful to everyone listening. I love you, Betsy. We love having you here. Thank you so much. And you know, our podcast is all about love, right?

Don Priess: 52:01

It's all about love, and that's because love is powerful, love is contagious, and love conquers all we thank Betsy for being with us today. If you like what you saw or heard today, then please like it and then share it and subscribe and do all those fun things. And yeah, we will hopefully see you next time on Love conquers halls. Everyone. Have a great day

Susie Singer Carter: 52:25

care. Bye, thank

Betsy Wurzel: 52:26

you. Bye, bye. You.