Love Conquers Alz
Love Conquers Alz
AARON ADAMS: Caregiver and Author - A Son's Harrowing Journey Through Our Broken Healthcare System
In honor of Residents’ Rights Month, Don and I, along with our special guest-host, Producer Rick Mountcastle, the former US attorney famed for his role in the Purdue Pharma case, are highlighting the importance of listening to residents who live in our country’s nursing homes, assisted living and board and care facilities.
In episode 96, our guest, AARON ADAMS, helps us explore the emotional labyrinth of healthcare navigation which in too many cases isn't always kind. Aaron is a son, author inventor and former caregiver for his father, Thomas Adams, was a robust 75-year old. After treatment for heart issues, Thomas was sent to an acute rehab hospital.
Through Aaron's poignant personal story caregiving for his father, we unveil the harsh realities of seeking adequate medical care and the systemic flaws that many families encounter. From Aaron's fiery exchange with healthcare providers who underestimated his father's needs, to the desperate struggle of a family fighting against hospital bureaucracy to grant their father a peaceful end at home, these narratives underscore the dire need for advocacy and transparency. Rick Mountcastle lends his legal expertise, dissecting these challenges and providing a sobering perspective on patient neglect and the systemic issues at hand.
In a world where medical decisions can feel like a battlefield, the emotional rollercoaster of advocating for loved ones becomes evident. As families grapple with complex treatments and the ethical dilemmas surrounding end-of-life care, they find themselves questioning the motivations of medical professionals and the adequacy of patient care.
The stories shared here emphasize the importance of informed advocacy, the emotional toll of feeling sidelined, and the sacrifices made to ensure dignity and respect for loved ones. Join us as we unravel these deeply personal and universal struggles, offering insights and solidarity to those navigating similar journeys.
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Don Priess: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's 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, music.
Susie Singer Carter:Hi everybody. I am Susie singer Carter, and
Don Priess:I'm Don priess, and this is Love conquers all's Hello Susan,
Susie Singer Carter:Hi, Don. How you doing? You got casual there? I said, Don Yeah,
Don Priess:you did. Yeah. I normally it's Donald. Yes, it's Don I wasn't even sure if you were talking to me, enlightening
Susie Singer Carter:the mood enlightening today, before we do a deep dive into where we're going today. Yeah. So speaking of that, hi everybody. Thanks for joining us. Love conquers all's we really appreciate you coming back and being loyal listeners, and we hope that we're bringing value to your life. And I think today will be particularly valuable in terms of kind of a different subject that we're kind of skewing a little bit to go along with our where our head's at right now, which is in our documentary, No Country for Old people, right? And because of that, we have a very special co host guest with us, a guest co host, which is, which is none other than Rick montcastle.
Don Priess:I was wondering who that extra guy was up? Yeah,
Susie Singer Carter:yes. Rick montcastle, hi,
Rick Mountcastle:Susie, Hi Don Thank you for having me.
Don Priess:Hello, Rick, of course.
Susie Singer Carter:So in case you don't know, Rick is not, not only is he the CO producer, along with Don and I on that documentary, No Country for Old people. Rick, I'm going to give you his very prestigious background, is a former retired US Attorney, an award winning federal and state prosecutor who prosecuted one of many cases which but you might have heard of the Purdue pharma case where he prosecuted them for fraudulently marketing Oxycontin, and that story in particular, was was featured in a Miniseries. On Hulu called dope sick, and Rick was portrayed by Peter sarscard, who's really, so he's really finding his his Starlight right now he's in everything, right?
Don Priess:Like, well, like we were just watching presumed innocent, and there he is playing another another prosecutor, yes. Another prosecutor, yes, another prosecutor.
Susie Singer Carter:He found his niche. Well, I
Rick Mountcastle:think that his career took off once he portrayed me in the Hulu.
Susie Singer Carter:Who could read it any other way? Rick, of course, read it any other way? Yeah. He
Don Priess:wasn't as nice. He wasn't as nice and presumed innocent as he was, you know, you know, I didn't like him as much as when he played.
Susie Singer Carter:He was smarmy. Yeah, he was he was icky. But side note, presumed innocent. Very, very intriguing. We liked it. Yeah. Okay, so, you know, back to, back to our show the way that Rick and I met, in case you also don't know that story, and I'll try to be brief, but it's really, it's really kind of interesting, and it's what Rick always says, There are no coincidences. And I was watching dope sick, and in the final episode, the actor who was playing his partner came in and announced their next case, which was also a pharmaceutical case, which was against Abbott Labs, who produced ox I know Depakote, which, and they off marketed that drug, which is a Black Label drug, to nursing homes. And my mom was a victim of Depakote, and I didn't know what it was until her doctor told me I thought that her, I thought her Alzheimer's was progressing, and that was eight years before she died, and she became, she went from this, you know, very physically healthy person, to a zombie. And so I reached out to Rick on LinkedIn, and said, Would you come on our show? And he did. And that was during the time that my mom and I were going through such horrible, you know, that whole journey with the nursing home, and that Rick was the very first person to tell me that it wasn't just my mom's issue and my issue and this particular nursing home. It was really a systemic crisis. So from there Rick, Rick was, was it's a long story. I won't go all into it, but Rick was actually retiring that year, which was 2022, and when we decided to do the documentary, he was all in because he had also prosecuted nursing homes for over two decades and really didn't see any any significant change. And he, as he says, is sick of it, right? Rick, right.
Rick Mountcastle:I am. I'm sick of the same old, same old thing going on over and over again for year after year after year, and it's time for a change,
Susie Singer Carter:right? So, of course, we were, you know, beyond ecstatic. Because you know, what Rick brings to to this documentary is invaluable, and his experience on on the political side, and all of the the you know, the the underbelly of what we see as as consumers. You know, he had that experience being boots on the ground and having and dealing with families and basically saying, I have my hands are tied, like, this is the this kind of care is the now, the standard and so, you know, we're coming from it with all different kinds of perspectives. And what we're finding as we're doing this documentary is that the stories are there. They're endless, and they're really important. So obviously we can't put them all in the documentary area. We'd be we'd have, like, years and years worth of material. But there I want, I want, you know, we just Yeah, and we decided that you know, that we need. It would be really powerful to share with you guys, other people's stories, so that you can understand the breadth of this issue and that people, it isn't just an elderly person's issue. Or it isn't just, you know, a diversity issue, or some you know, people you know in in rural, rural areas, these, you know, these nursing home issues are not outliers. These are the standard. And the good, the good nursing homes and long term care facilities are, are the those are the outliers
Rick Mountcastle:and so Susie, it's not just a nursing home issue. It's acute care hospitals, which is we're going to look at today, rehab facilities. It's basically anything that is in a position, any kind of facility that is respond. Responsible for taking care of people, not just elders, but disabled folks and people that are recovering from surgery. They're responsible for taking care of them in these facilities. And what we're seeing is that they are they're basically abusing and neglecting the patients. And so the breadth of this is, actually, is beyond what we had imagined when we first started the project. I would say,
Susie Singer Carter:I think so. And, and, you know, we didn't touch, we tried, you know, because of that, the massive breadth of this, of this issue, we we stayed primarily on nursing homes in the documentary, but and that's why we want to bring more stories that that you know, actually talk about what Rick just said. So our last episode, we did that, and we're doing it again, this episode with with another person. And we just think it's going to be so valuable for you all to listen to these stories so that it doesn't happen to you, so that you can be prepared and understand what you're up against and why this documentary is so damn important. So without further. ADO Dawn well
Don Priess:today, our guest is Erin Adams. Aaron is a heavy machine operator for the local 649, International Union of Operating Engineers, and lives in Peoria, Illinois. His father, Thomas Adams was a robust 75 year old who was a beloved brother, father, uncle, nephew, cousin and friend, but after treatment for heart issues, Aaron's father was sent to an acute rehab hospital, and this is where the story of Thomas Adams took an unexpected and dark turn. Today we have his son, Aaron, with us to share their harrowing journey. So let's say hello to Aaron Adams. Hello, Aaron.
Susie Singer Carter:Hi, Aaron. Hello. Hello, hello.
Unknown:Thank you. Thank you for having me.
Susie Singer Carter:Thank you for being here. We really appreciate it. And appreciate you sharing your story with us, because I know how hard it is, and part of sometimes it's cathartic, but then also it's really difficult to relive it. So thank you. Do you want to just give us a little recap of how we got to this conversation today, and then we'll dive in and get into the nitty gritty.
Unknown:Okay, well, I guess it kind of started with my father in his health issues. I didn't really take it serious, because, you know, Dad, you just think that he's going to make it through anything, kind of like you think, mom, she'll just make it through anything. And he had a stent put in, and the stent was bad. It got infected. Once that state got infected, he went to the hospital and they replaced it initially, but they didn't take the infection out. So the second step became infected, and the hospital who had replaced it chose not to deal with it because it was had been like three months when they had just had the open heart surgery previously. So they sent him up to Chicago. I'm in the Chicago area, so they sent him up to Chicago, and the hospital handled it. Loyola, they handled the situation, but they didn't get all the infection out. It traveled down to his leg. He had come home, and he was home probably three days, if I'm not mistaken, but he just kept explaining, you know, expressing, so much pain in here, and I'm in pain, I'm in pain, and I'm paying and I'm thinking to myself, Dad, you can't be in that much pain. You get up and you drive, you know, three hours to go get watermelons. You load up the back of your truck, you bring them back here, and then you sit out and you give them away and you sell them. You can't be in that much pain. And he expressed, he said he was so Loyola ended up sending him to kindred North Lake hospital for rehabilitation. They had went back into the leg, got the infection out, sewed him back up, and said, Okay, we're going to get you back walking again, get you back home. So while he was there, his health just kind of declined. And it seemed really weird, because he would call me every day and he'd say, you know, I'm doing this, or I I'm doing that, you know, he'd give me different details about what was going on with his care. It was a bit challenging for me to get up there, because Chicago's approximately three hours away from where I'm at now, and then I worked an hour and a half south from where I'm at now, so that was about four and a half hours to get to him, you know, get back and forth to work, and I'm his only child, so that was a challenge as well. But slowly but surely, he he would stop calling, and I'm wondering, like, how come he's not. Checking in. Usually, he calls and checks in. And there was one time that I called and they said, Aaron, I'm weak. I'm weak. I'm so weak I can't hold my phone up. And I'm thinking to myself, That's impossible, Dad, you're there for rehabilitation. You know, how can you not hold your phone up? I couldn't fathom that idea. I mean, I thought he was just trying to get out. I thought he was just trying to hurry up and get home because he wanted to be home and eat normal food and play with shadow, you know, because he loves shadow. I mean, he loves this dog, but he was actually losing his strength for whatever reason, whether it was because all of the infection wasn't out or, you know, the treatment of the facility, the worst part of the situation was it was something that needed to be done, and the caretakers, they weren't doing what they were supposed to, you know, and I think this topic is a little broader than actually what we we initially came for, because as I sat and thought about it, you know, with him not being able to hold up his phone, that should be an issue. If I come to get my leg, you know, to get rehab on my leg, and you overhear me telling my son I can't hold my phone up. You know, as the taker, as a caretaker, that should be an issue of concern, at least for me, it would be, you know, but as time grew on, he stopped calling totally. And so I placed a call, and, you know, asked like, Hey, where's he at? What's going on? And he would tell me things like, you know, they're hiding my phone, or they're not letting me call. Yeah, it was, it was some things there that that were very, very concerning. And as time progressed on, I went, you know, I went up to speak with the doctor, and I said, Hey, can I can I get my dad to come home? We have a Kindred Hospital in in my area, you know, can I get him to come here? And the doctor was gung ho for it? Yeah, we can do that. We can do it. And I'm like, okay, great. We'll make arrangements. I'll talk to the hospital here. You can talk to the people you need to talk to. We'll make arrangements. We'll get him home. The next day, he went unresponsive and flatlined right after I had that conversation with the doctor that was on a Friday. On a Saturday, he flatlined. No one notified me. No one called me Sunday, which was the next day after that he he flatlined. I had a text from my uncle and said, Hey, your dad is unresponsive. You need to get to the hospital. And so I'm thinking, that doesn't make sense. How is he unresponsive? You know, I get to the hospital, and when I when I get there, I speak with the doctor, and he says, Well, he was unresponsive yesterday for eight minutes, but we resuscitated him. But we don't know if there's any brain damage. We don't know. So we'll do the, you know, the EEG and all the different tests they wanted to run. So I said, Okay. I asked, Well, do you know what happened? Can you explain what happened? The explanation I was given was like, when an old car goes bad, you know, everything starts breaking down when the carburetor goes bad, you know, God, I
Susie Singer Carter:heard that too. Yeah,
Unknown:yeah. So that was same thing, Aaron, that's crazy,
Susie Singer Carter:isn't I'm sorry. No, no worse, yeah.
Unknown:So, yeah, I was a little perturbed. I Well, more than a little. I was upset. I mean, I'm not even allowed to you. I was upset. And I looked at him and I'm like, Are you serious? Are you really going to give me the analogy of a car, and my father's laying here like a vegetable, you know. So that kind of started the the the fire within me, you know, and disdain within me for this, this situation, what we're talking about to kind of just progressively move forward. I had asked the doctor, I said, you know, once we find out what his brain activity is, you know, what the level of brain activity is, I still want to get him home, you know, because if he's going to be a vegetable, he might as well be a vegetable at my house instead of being a vegetable in your hospital, you know. And so I was told I couldn't afford to get him home. No transport service would do it. I mean, everything in the world why they didn't want to release my father to me,
Susie Singer Carter:who told you that the case manager or the doctor,
Unknown:the doctor, the head physician, told me that yeah and yeah, yeah, he explained to me that I couldn't afford it, which was funny, because he doesn't know what I do for a living. He doesn't know, you know, I don't have kids, I don't have I own several properties. I own all my vehicles. You know, I make a great living. When I say great living, I'm I'm good, you know what I mean? So you're good. He doesn't know that I'm good, you know, okay, but good.
Rick Mountcastle:He was there. Can
Susie Singer Carter:I ask you a question? Yeah, they're stereotyping you but can I ask you, was your dad? He was 75 which, in today's world is not an old, you know, old person, and so was he on? Clearly, he was on Medicare, but was he on Medicaid at that point, too for the long term care? Or, I
Unknown:think so, because what I. Talked to his caseworker, person, she said that he had had both. They had transferred him to both Medicare and Medicaid, if I'm not mistaken. And I think, and I hate to say he was stereotyping me. I don't want to just say that, but I think because my father being so far away, me having limited access to him, and him being on Medicaid and Medicare, he he made a safe assumption. Let's say he made a safe assumption that we weren't able to, you know, you know, fund getting him home. And so I took it as that, you know, at first I took it like, oh, you know, I kind of gave him the look like, Dude, you know. But then I said, You know what? Maybe because of this circumstance, he's making this assumption, and not because of anything else.
Don Priess:Yeah, Rick, I had a question, would a doctor normally be making those that assumption or those decisions, or wouldn't that be a case worker or someone from the administration
Rick Mountcastle:he was, he was probably the medical director. And you know, oftentimes the doctors don't like to do that. They probably should. They should be talking to to families more. But a lot of times they don't. They like to send a social worker or a caseworker, manager, case manager out. But I think it's, you know, you'd want to talk to the doctor that was treating you our loved ones, right? That's the person you want to have that face to face conversation with.
Don Priess:So I don't know, right? But as far as it's, as far as, like, determining transportation, Yeah, isn't that? That doesn't seem to be his position that seems
Susie Singer Carter:out of his purview. Yeah,
Rick Mountcastle:nobody knows. Nobody knows for sure. They should not be making that assumption, right? That should be up to the family to decide what, what's within their means to do. But I think that was like a, you know, I think as the as Aaron starts talking a little bit more, will find that they didn't want, they were they didn't want something to be discovered. Okay, they were hiding something. And the doctor, being part of that group, didn't want necessarily. I mean, he's getting paid by that rehab facility. Gotcha. You know, he might have even a position there of some sort of authority. And there's something, you know, I think it'll become clearer, as Aaron talks, that maybe they were hiding
Unknown:some what I think he was attempting. And by no means am I attempting to take this side of the doctor, but I think he was attempting to deter me from trying to get my dad home, as Rick was explaining. So I think in him making the statement about finance that might have scared me, I guess he was thinking, which it didn't, but in his mind, he was thinking that possibly might deter him from continuing to try to push the issue about getting him back to Peoria. He also stated that, you know, no transportation company would do it. He said, You know, it's a three hour trip. Your dad is on the ventilator. We can't transport him with the ventilator. You know, he gave me every reason in the world, everyone that he could possibly come up with. That was the initial answer. So, yeah, I was, I got, I got really upset, you know, I got upset to the point where I told him, I told him, I don't want you to say anything else to me. You go that way. I'll go this way. We're not going to talk anymore. From here on out, it's going to be somebody else who communicates with me because, yeah, we're just not going to do this. And he, he was upset after that, I left, you know, let me go back a little bit. I honestly was going to pull the plug that day. When I saw my dad that Sunday, I was going to pull the plug, but I had a friend go up with me, and she's a nurse, and so I was like, You know what? I probably need somebody who knows about what's going on, because I don't know anything, and they could probably tell me anything. I need someone who knows the terminology, who understands so I called her. I said, Hey, you want to go to Chicago with me? Dad's in the hospital, they say, flatlined yesterday, and now he's, you know, unresponsive. And she's like, yes. So we drove, we got up there, and so she looked at me, she says, Aaron, don't do that yet. And I'm like, Oh, I can't watch him. I can't see him like this. I just got to do this. And she's like, No, don't do that yet. And so I'm like, Okay, I called my mom. My mom said, Aaron, give it a week, just wait. So I said, Okay, I waited that week, and they still hadn't got the EEG report. And I'm like, how do you not know what his brain activity is after a week, you told me it'd be two days. Now it's a week later. We still don't know. So I said, Okay. Next thing I know he I go up with, I go up with my Flm, F, L, M, a, because it's called the problems at my job. I he has like eight doctors, and all of them are calling me every day. Excuse me to ask, can they do something else, you know? Can we turn the trach tube? Can we add more of this? Whatever the stuff was they were using to keep his heart. Rate up, you know, because it's his blood pressure, whatever they need to keep the the veins constricted. So they would call the kidney doctor, the nutrition doctor. And I'm at work, and I'm getting these calls, and my supervisor like, hey, what's what's going on, you know? And I'm like, Man, dad's in the hospital. He's dying, and he's like, Well, you know, the company we're working for, they don't want you on your phone. And I mean, three, four or five times a day, I got a different doctor every time they go in to see him, that doctor would give me a call, you know. So it's jeopardizing my job. So I take the FL M A paperwork up there, and he tells me he's not cited it unless I do a DNR or pull the plug. So he gives me the option to do one of the two. And at that point,
Rick Mountcastle:Whoa, yeah. That's a family that's Family Medical Leave Act, which is, it's a law that says certain employers have to allow employees time off of work to take care of a family emergency, like a medical emergency, like that, but, but, but Erin's talking about needing to have the doctor gets to sign it to so the employer to verify it with the employer.
Don Priess:But you have to have a do not resuscitate, or a that they they're making you do that.
Unknown:That's insane. Try to make me. Try to make me. Um, he tried to make me. And I looked at him and I told him, dude, you're going to suck, because he told me he wouldn't sign it. And I'm like, Dude, you're going to sign this paper, and I'm not going to do anything. I'm not doing anything, but you're going to sign the paper. I mean, he was upset with me. I was upset with him, you know. And I think he kind of felt like, well, you know, I got this six foot black guy, 235 pounds, sitting here telling me I'm gonna sign the paper, even though I don't really want to. I think I'm going to, you know, and so at that time, you might have, you know, kind of stereotyping like, you know,
Susie Singer Carter:I'd rather have your stereotype than mine, because this is what they did with me. This is what they went with me, that like that, that dumb, that dumb blonde in the other room. What the hell she's talking about? A buddy. Nobody was intimidated by me. Oh,
Unknown:goodness, I'm so sorry. I should have been there for you. But he signed the paper. He fussed his way out. Told me it was stupid, you know, whatever. But he did sign it. I didn't, you know, do that. I didn't do the DNR. But the nurse told me that they thought that I was going to do the DNR that day. And I told him, I'm not doing it until my dad gets home. I'll do the Do Not Resuscitate once he's in my care. So smart, you know, smart. And so I left the hospital, a course upset he, you know, the doctor walked off. And so I began to call companies, every transportation company I could think of, and found one. They said, Yes, we can do it with the vet tube. We can do it. We can get him back. We can get him to the Kindred. We'll pull the vet tube from the Kindred Hospital, and then, if he's, you know, if he survives, you can get him home. Perfect. I just want him back in Peoria. That's all I want. A couple days later, they would call me back and say, Hey, we talked to that doctor. He said, No, we shouldn't do it, because this, this and this. And I'm like, Are you serious? They're like, yes. Like, okay. Next week comes by, I find another company to do it. They say yes. Couple days later, they tell me why they can't, because the doctors told them something else. So I called up there, I told him, I said, Hey, listen, I don't want you to speak to any more of the transportation companies if you're going to tell them they can when they've told me they can. It's some reason you're trying to stop me from getting my dad. I don't know why. I have no idea what what you're doing, but you're trying to impede on every opportunity that I'm having to get my father home. I just want my dad home. Dude, that's what I want. I don't want him dying here. I want him home. And so he's, you know, of course, he tried to give me the spill of why, and this medical issue, that medical issue, it was just a whole lot. There were some other things that I wish I could say what they were doing, but unbeknownst to me, I don't know about the medical field, so while they were calling me, asking me for my permission to do certain stuff, they weren't documenting the calls. So because I wouldn't do the DNR, they want to contact the Ethics Commission committee to revoke my Power of Attorney rights so they would be able to have power of attorney to do the DNR, and whatever happened after that. I mean, it was some weird, weird stuff going on, and how, you know, they're able to manipulate the system that they've set up against you. And when you don't know, you don't know. So, you know, that was one of the things, his medications continue to increase. And I'm like, why are these medications increasing? If he's a vegetable, why are we increasing medication? But if you're saying it's going to help the situation, you know not only that, but if your medication is so high, we can't transport you because you have too much of this medication in you, or too much of that medication in you, so you can't be moved. You understand? I didn't know this at the time, but they. Do. So if we can tell we'll say, Hey, Aaron, can we, you know, give him. We need to give him more whatever of this. Oh, yeah, go ahead, as long as it's going to help, you know. And you come to find out, it wasn't really to help, it was really to, you know, make the situation work in their favor. Long story short, third weekend about another company, they say yes. A couple days later, they tell me why they can't do it. So I, you know, I kept talking to everybody, though I'm just meeting new people, talking to new people. And finally, I met this young lady. Go ahead,
Susie Singer Carter:I was your mom. Was your mother, part of the caretaking, caregiving? Well, because she was, she lived closer right to where your
Unknown:dad's at. So my mother was in Arizona visiting grandkids, so she was out there with all the great my mom's a snowbird, you know, in the winter time she goes to Arizona, summertime, she comes back to Illinois, so she's in Arizona. And I'm kind of keeping her updated on what's going on, what's going on, but I don't want to really stress her with it, because, you know, she's about all I got left. So I don't want to, you know her, you know, have a heart attack and die on me. And, you know, I just try to, yeah, I'm trying to handle it, you know.
Susie Singer Carter:And too much, my friend, you were handling a lot, because I was the only one handling. My mom, I was the only one, so I know, yeah, yeah.
Unknown:So I spoke to a young lady, and she initially said she would be able to, but then she explained to me that she wouldn't, but she referred me to a company that specialized in transporting individuals like my dad, who would be on hospice with the vit tube with all the machines hooked up just like that. So I'm like, Yes, I'm getting him home. So I'm calling the family, hey, I'm getting him home. He's coming on, whatever. So I contact the company. They're like, yeah, we can do it here. We want to lay eyes on him first. So I said, Okay, perfect. So they go up, they lay eyes on them. They see the condition, they call me and say, We can do this, but the hospital wants this DNR before he leaves. Will you sign the DNR for them? I said I will not sign the DNR for them. I know what happens. You know, at that point in time, usually at that time, the help totally declines, and he'll probably be dead. I will not sign it for them. I'll sign it once he gets home. That's the agreement I'll make with you guys. If not, then you guys just going to have to keep him at the vegetable and we're going to figure something else out. But I refused, so she said, Okay, same, absolutely, absolutely, yeah. So they went and saw him. They did some investigating. They saw some things didn't add up. Didn't add up between what the doctor was saying, what the file was saying, Things didn't add up. So they called me and said, Hey, Aaron, you know things aren't adding up. I explained to him everything I have been through throughout the whole situation, and they're just like, you know, we're sorry about that. We'll get your dad home. So the day of them supposed to be bringing him home, they talk to the doctor. Doctor gives them something, they call me and say, Aaron, look, we can't do it. And I'm like, hold
Susie Singer Carter:on.
Unknown:I'm like, Hold on, wait. I understand that when my dad arrives, he'll probably be dead within five minutes. I understand that I've accepted that fact, but I want him to do it here. That's all I'm asking from you guys, is I just want him here. I don't want him anywhere else. I want him to die here, right? I can't get my I can't get his auntie up there. My grandmother's only celibate sister. I can't get her to Chicago. I can't get the whole family there to see him before he passes. I'm accepting that fact. I just want him here. It's
Susie Singer Carter:okay. I feel you take your time.
Unknown:It's okay. So she said, Okay, if you will agree to doing the DNR, once he gets there, we will bring up hope to you here. I said, Thank you. She sent me the paperwork. I signed the paperwork. They got on their way. They started coming. They put him in the ambulance, got him home, so we got a chance to spend time with him. You know, we hung out with him all the family was here, and he actually, we spent time for probably about 30 minutes with the mid tube. They gave us that, which I was very grateful for, because they really were supposed to take it out five minutes after he arrived. But they gave us time, um, and when they pulled the vent, he lived about an hour. I mean, not much, but that was, that was enough, you know, he breathed on his own. We got to talk to him, you know, everybody got to see him, and I kissed him, and I said, Dad, it's your choice, because he was breathing really good, like he was, I thought he was going to come through, you know, he start pumping really heavy. You. And I said, it's your choice, choice, whatever you want to do. I'm here. It's whatever you want to do. So then, of course, he took his last breath, and the family started to exit out. And that's when I was notified there were some things that I needed to see from the transportation team. I had already had plans on I had already had plans on taking some pictures, because, you know, some of the physical conditions that I had already saw, there was a scar on his a sore on his mouth, huge scab on his ear. So I wanted to see what the rest of his body looked like, you know, very inquisitive. And when you tell me no, I'm thinking of ways. How can I get this done? So and why are you telling me no? What is the reason you're saying no? Yeah, so the nurses rolled his body, and that's what I've seen. Some of the most horrific sites I've ever seen in my life, the size of my hand. Like I said, I'm six foot, about 230 pounds, and my hand is not really huge by this back and palm of basketball, you know, and there were bed swords on his body, the size of my hand, you know, both my hands round, you know that. But you know, and height or and width, that was like, how it was the size of a dinner plate. And I'm like, oh, okay, I understand now. I get it. I get it. This is why I couldn't afford to get him home, you know, that's right. This is why, you know, all of the different things that were brought to me, and why the attempts to stop me from from getting him home. And so they began to explain to me what the the bedsores were, you know. And I'm grateful for those nurses. They were so wonderful. I mean, they were just the sweetest ladies in the world. But they explained to me, you know, how that happens, you know, under what conditions those things happen. And
Susie Singer Carter:I'm just going to interject and say for our audience that, you know, and I'd say it all the time, but it is the hallmark of neglect. They're not. They are avoidable. And our experts said that on our documentary, they are, they are avoidable, and they are the they are one of, you know, five things that are the hallmark of neglect, and that that is, that is on their to do list is to make sure that it doesn't happen, and if they begin, there's always too avoided to get to that level that your dad had. That's me, Susie, saying that, not you, but
Rick Mountcastle:CMS, the Centers for Medicaid, CMS will tell you, says they are never events. They should never happen in any kind of care situation, right? And
Don Priess:if they do, they can be treated. If they're caught when they're when they see these people, you know, they they deal with this person. If they see it starting, it can be treated. It can be avoided, but it has to be. It is neglect,
Susie Singer Carter:yeah, it's neglect. The same with the UTIs. I was told my mom, oh, older people just get UTIs full stop. End of story. That's it. We can't do anything about it. That's baloney. That's not that's neglect. Absolutely
Unknown:they told me the same thing. They said the same thing.
Susie Singer Carter:Yeah, and so can I also want to say because for people listening, what Aaron did is, is is really important, is that he is curious, and he was curious, and he didn't take what everyone told him as the gospel. And when you have a gut feeling and you know your person better than anyone else, like you know your dad better than anyone else, I knew my mom better, and I said to them, I'm not because I had my mom on on full resuscitation, because, you know, I didn't want to have Do Not Resuscitate until I could look in her eyes and know she was ready to go, right? I didn't want anyone else making that decision in the middle of the night when I wasn't there, right, right? And I wasn't and I wasn't being Pollyanna, and it wasn't like I'm trying to prolong my mom's life and keep her suffering. No, not at all. But I needed to know. I needed to see her, because I know my mom. She gave me the high sign. I know her absolutely so as you knew your dad and as you loved him more than anyone in that room could so, yeah, so I and what? So what you did? I just want the audience to know that that that is so important when you when your intuition or your instinct is telling you otherwise, and it's very difficult to go up against this whole team of people that are telling you the opposite. It doesn't matter if it's one person or 20 people, if you have an inkling that you're right or there's something fishy or something wrong, stick with your instinct. Right, right? Aaron, Absolutely,
Unknown:I agree 100% follow your gut.
Don Priess:Yeah, and that's hard when you're sitting there and they're the expert and they know, and they've been through this and and it's very difficult to say. Well, no, no, I'm not listening to that. You know, that's difficult. It's hard. Well,
Susie Singer Carter:because you get gas lit, and they tell you, yeah, I'm sure they thought, Oh, he's angry, you know, you're just upset, and you're dad and you know, this is, you know, I heard that all day long. I know, we know it's so hard. We know you're in stress. We understand. And BS, a lot of BS, yeah, so, but it's hard because you're vulnerable. You
Unknown:are, you are. But the thing was, excuse me, the thing was, it didn't make sense. And I'm a guy who's I'm I'm realistic, but I'm rational. I like the information. Once I get the information, then I process it to say, Okay, this doesn't make sense. You're telling me that you know we have to do a DNR, or we have to pull the vent to and betray but I'm thinking you just told me he's a vegetable. He doesn't feel pain. He's not responding to pain, so why do we have to do anything right now, if he's not responding to pain, it doesn't make sense that we have to do a DNR. Well, you don't want him to go through more pain if they do the CPR on him. But he's not responding to it. He doesn't feel the pain. So what are you talking about, Doc? You know, I mean, I just look like this. I might have boo boo written across my forehead sometime. But today is not that day, you know, today,
Susie Singer Carter:I wonder if I had that written on my back. I thought it was my hair color,
Unknown:but yeah, so it just didn't make sense. You know, you're pressuring me to do something, but there's no logical reason to do it, except that exactly you're trying to, you're trying to work something out over here has nothing to do with the patient himself. So, so, yeah, that was, that was a big part in it, you know. And that's where we're at today, you know.
Susie Singer Carter:Right, right. So, wow. So, first of all, thanks for ruining my mascara, and I'm so sorry.
Don Priess:Mine, too. Mine's a mess.
Rick Mountcastle:I mean, I'm just so sorry about that. You have
Susie Singer Carter:I am too. It is, it is. I'm so sorry. And
Rick Mountcastle:the thing about it is that this is not an outlier. This this What happened to you, happens on a regular basis. And in all these in these facilities, you have people trying to cover up. They're telling basically, they lied to you about why you couldn't bring your dad home, and, you know, it's, we just, it has to be changed. We can't, we can't have this. It's, it's ridiculous. And yeah, and so my heart goes out to you. It's just awful. And I Yeah,
Susie Singer Carter:it's no wonder. When you think about like people are listening now too. Sometimes you people just give up because it is so hard to fight against that kind of pressure. There's a big pressure that they put on you, and they can make you feel, I don't know if this happened to you, but many people I talked to have expressed this and and there was a, you know, I'm gonna say that I contemplated it, but it never really affected me. Where they try to make you feel guilty, like you're you're hurting them by not making this decision. You're hurting or causing suffering. Yeah, you're causing them to suffer, and you when you're going, but wait, no, no, what you're doing, what they're doing, is causing her to suffer. This, this doesn't make sense to me. I'm not a doctor, but I have Google, and my gut fingers, I got fingers, and I looked up a lot of stuff. And by and large, everything that I predicted kept happening, you know, like they wouldn't take a Foley catheter out. I'm saying I did research. It's like, that's like poison to keep that in a person that doesn't need it, she's fine. She needs it. It's, you know, her wound did it up. Next thing you know, she's hemorrhaging in bed from a Foley catheter, needs blood transfusion, has to be rushed to the hospital. It's non stop, because they won't listen to the family, and they have ulterior motives, which is at bottom line, follow the money always, and that. And it's down to understaffing. I get, you know, so, as we talk about in the documentary, but it's hard. And I get why people, especially when you have tons of other responsibilities, if you have a family, you have children, you have a job, you have all kinds of things, and you don't you've never been put in this situation. Now, you're dealing with a with a, right? You know, I didn't know what a, f, L, M, a, is that
Unknown:it? FL,
Susie Singer Carter:yeah, because, I mean, I'm independent contractors, so I had to get that permission. But, you know, I imagine that that most people don't know what that is. We. Don't know what we need to do. We don't know our rights, right, and so we're scrambling, and some people don't have the fortitude. That doesn't make them worse, these don't, right, they just don't, and that's and that's just the truth, and they shouldn't have to. It's not like I shouldn't take my car in. Let's, let's go back to the car analogy and take it in and and I don't know one thing. Yeah, I don't know anything about carburetors. I shouldn't have to. If I'm taking it to the professional and paying my money
Unknown:Exactly, exactly, I
Susie Singer Carter:agree. Why do I have to go home and Google it and find
Rick Mountcastle:out that's so interesting that that they use the car thing with you too. Susie, I hadn't, hadn't known that. Yeah, that that, that must be, that must be the standard, one of the standard lines they used to gaslight people, right,
Susie Singer Carter:right? Because I was, they were, because the doctor, when he first admit, like, discharged her, which she had gone in with, because of this wound that I didn't know about. They didn't tell me. That didn't happen there Aaron, which,
Don Priess:by the way, they buy they need to tell you. They have to tell you. And of course, they got
Susie Singer Carter:to the hospital. Yeah, when she got to the hospital, they said they didn't want the responsibility on them, so they said, your mother's here, but she was also admitted with a stage four wound, so we wanted you to know that. So when I called the facility, they said, Oh, it didn't happen here. So apparently it happened on the way to the hospital, right? Yeah, yeah, yeah. So yeah. And so when she was finally and she also was trached for no reason she was she didn't need it. It's just easier. It's easier. They gave her a G tube to feed her through the belly. She didn't need that. It's easier, right? It's then all you have to do is turn the machines. They don't have to deal with them, because it's time consuming, and when you're understaffed, that's how you do it well. Plus
Rick Mountcastle:they get the charge for those procedures, and they get the charge, it starts more money,
Susie Singer Carter:right? So when she when she was released, and I said, is my I wanted to know, Is my mom dying? And the doctor was literally said to me, stop being so dramatic. No, your mom, no, in a good way. He was saying it in a good way. He was saying, like, Bill, your mom is a health She's a strong woman. She will get her back to her base where she was, but by the time I got back to the facility, that's when I started getting that analogy. It's like, well, you know, everything's breaking down, and this is what happens. It's like a car. You know, it's like a car. So when things get starts, like one thing triggers another and and that's how it works. And I'm saying but, but you're not taking care of her at all, so you just writing her off, like, take care of the wound. Take care of this, you know. And, and, yeah, they just wanted me to give up. They just said it's gonna die from the wound. Yeah, yeah, yeah. So, you know, and most, and I understand most people would, a lot of people would go, my mom's dying, and the from the wound, that's what they told me. And that's it, end of story.
Don Priess:And that's and some people don't have, some people don't have family at all, left. That's drift to the, you know, where there's nobody advocating for them. You know,
Susie Singer Carter:Aaron, can I just tell you I was there? I gave up everything for six months. I'm not a helicopter mother by any I'm daughter by any chance, you know, stretch of the of the imagination. But when, when all this, when the, you know, poop hit the fan? I was like, Okay, that's it. I have to go every day, because if I don't, God knows what's going to happen. And it wasn't, you know, wasn't a three hour drive, but it was definitely in LA at least over an hour each way, right? Because of traffic, I ended up moving into my ex brother in law's house, like, two miles away, because I couldn't take the I couldn't go back and forth every day so, but I mean, even me being there every day didn't help. No, FYI, isn't that horrible?
Unknown:It is. It is because it's kind of like what Don said you you trust the doctors. You trust these people because they went to school for all these years. You know, they know the medical terminology, and you just, you expect the system to work the way they tell you it's going to work. You know, when I go to the hospital because I have a cough. I actually went to prompt care a couple of days ago because my tops were swollen. And so the young lady said, well, we'll test you for strep. So she did that. And she said, Well, right now, we don't know, but I'm still going to treat you as if you had strep. And so I'm thinking, Okay, how long will this go to make my toxins feel better? My throat won't be swollen, you know? And so she gave me some some sort of steroid, and she gave me some sort of bacteria, like amoxicillin. So I'm thinking, Okay, I think it's going to work. I'm trusting her, and what she's prescribing me to do what she said it's going to do. We put our family members in these care facilities, and we expect these. Facilities to do what they're supposed to do, you know. And then they come out dead, you know. And I hate to be so blatantly blood about it, but that's what happens, you know. And people think, Oh, well, well, he said it was because 1949 Pintos carburetor, you know, goes bad after 60,000 miles, it's supposed to be that way, you know. And I don't know nothing about a 49 Pinto. I don't know if you guys do, but I'm 45 so I didn't tell you about a 4549 Pinto, you know. But if he tells me about something that I have no knowledge of, and he just throws it over my you know, throws the cover over my head, or the blanket over my head, then I'm thinking, Okay, well maybe that is what happened. You know, his liver went bad, then his kidney went bad, then his
Susie Singer Carter:doctor was too old.
Don Priess:But you want to hear and you want to hear answers. You want to hear either solutions or reasons you want to hear. You don't want to hear they don't know. You don't want to hear there's you want to hear anything, even if it's something that's not positive, but you're hearing something you want to see a path, and that's where we start just accepting because you want to hear
Susie Singer Carter:but also, they also tell you things you also don't want to just hear something either. Because, if you remember, at the the emergency hospital, they told me my mom was on life support, which she wasn't. She lived another five months after that, but they wanted her to. They were basically right, yeah, and and he Yeah, and when I found out that they were upping her fentanyl like every half hour, and I don't know why, and then she shouldn't have been on it in the first place, right? And so he anyway, long story short, he said, Yeah, I can stop it. But you know, your mom, her, her organs have probably started to shut down by now. And once they shut down, there's no turning back. And I said, Okay, well, there must be tests for that to see if they have begun to shut down. And he said, yeah, there are. So, you know, couple hours later, he meets him at the hospital, yeah, let's just guess on someone's life. So he shows he shows up, and he goes, you're not going to believe it. They're all at 100% I have, boom, never saw that. I've never seen this. It's a miracle. It's a miracle. Your mom, your mom's amazing. It's a miracle. And I'm like, okay, but he told me her, her vitals, her organs were shutting down period. So if I wasn't such a stubborn bee, I would have, you know, I would have accepted it and said, Oh, okay, and let her go. Did
Rick Mountcastle:they ever do that, that brain scan, that, that they said they were going to do to see what kind of function they ever actually do that? Because I know they said they did okay. They did
Unknown:end up doing it. They did do it. I got the report, I think, don't quote me on this, but I think it was like a week later, and they said it was low level brain activity. So of course, he was unresponsive to pain, he was unresponsive to touch, he was unresponsive to everything, but he was breathing like 25% over the vent tube. So he was breathing some on his own, but everything else just wasn't functional. And I kind of, I kind of knew, you know, when I saw him that first time, I leaned over and I talked to him, and I could, I could I knew he knew I was there. There was no question about it. I got a bond with my dad like no other. And I know him. He knows me. And when I leaned over and I whispered in his ear, I saw him, you know, you could see him. Try to blink a little bit try to do something to let me know he knew I was there. So I knew that I knew that he that that at least that part of him was still there. Um, but there was nothing else, you know, Rick, there was nothing else. And once they came back with the test saying it was low level brain activity and you know, he was still unresponsive to pain. It was just about, we were just at a place where, now it's like, okay, well, let me get him home. You know, right, that's, that's, if he's going to be on hospice, I'll do better by having him at home than having to drive an hour and a half or three hours there, three hours back. You know, every day, hour and a half to work, hour and a half back up that way, to get that way. And so, you know, that's where we ended up being with, with, with my dad in that situation.
Susie Singer Carter:Okay, could he have been like, could they have had him on the, you know, heavy duty opiates that he wasn't responsive because of that?
Unknown:Well, I I snapped out about that, because early on, you know, he was expressing a lot of pain, so they were feeding them these, these medications and and when I found out, I'm like, What? What? You know, what are you doing? And they're like, oh, we have him on this. And that, and this and that, and I'm like, Well, I could've swore I spoke to someone and told them, do not give him any hard medications. If, the, if the, if the, you know, Tylenol three is the most I wanted him to have. You know, I didn't want the fentanyl. I didn't want the morphine. I didn't want any of those, because not only are they addictive? But in his condition, you know exactly, and that was just kind of common sense to me. I'm not if I know you can't get up, walk around and hang out, your body's not going to process them, those drugs properly, you know, they're just going to sit and it's going to, like you said, suppress you more. And another friend of mine, who she was a CNA, and she told me, she said, you know when you have combative patients, or, you know patients like that, they give them specific drugs that slowly kill them, but they give it in increments where you don't even know that it's doing that. And you know when they decide to say what they did, how they did, they're justified because of the small doses over a period of time, you know. And so that was another issue, but I told the doctor. I said, No more fentanyl, no more morphine, none whatsoever. And if you do decide you have to give him, call me and let's discuss why you need to do this, and then I'll make the decision as to yes or no. But they didn't. They just kept doing it. And then when I called and found out that they had they said, Oh, but we're doing it in smaller doses. I said, but yeah, you were supposed to call me, you know? But that that's what they do.
Don Priess:Yeah, as one of our experts in the documentary says, he goes, it's slow motion. Slow motion. Euthanasia is what it is. No it's you're just and you don't know what's happening.
Susie Singer Carter:Yeah. And for our, for and for an expert to say that that means that this is, this is not unusual. This is unusual thing. And, and I'll tell you the reason, what made me think of it is that when my mom was at that hospital with that doctor that said her organs were shutting down, when I found out she was on fentanyl, finally, like when they told me she was on life support, and they took out the trach, and she looked like she was dying, because, I mean, she looked like what I ever imagined, Like mouth open, not responsive, like nothing, and then three days later, because you're supposed to die within a couple hours, three days later, she came out of whatever this was, and I told him that, and he was still on the fentanyl. She's still on it. But my mom was a force. Like telling you, my mom was a force. If she didn't want to go. She was not going. And I was like, Mom, because my nephew was there. He goes. Nanny is not nanny is wide awake and smiling right now, wake up, Susie, I went over and Mama, you're a troublemaker. What is going on with you? What's going on here? She starts laughing. By the morning, she's watching TV, and I'm calling the doctor. I'm going, I want my mom out of this hospital. And I went to go take a shower. By the time I got back, I won't go through all the details, my mom was again, looking like a zombie with her mouth open, not responsive, and that's when the nurse told me the doctor had come and told her to up the fentanyl every half hour
Don Priess:after telling her he was taking her off of it.
Susie Singer Carter:So these are things that we don't know, because we don't know that's right, and unless you know your person so well, and then and you happen to be lucky enough to be there with them, like we said, we stood vigil, like I was there like I was right next to my mom, because they said she was dying. I'm not going to leave her alone, right? So, yeah, so I I'm so sorry.
Unknown:I'm sorry for your experience. It's one that no one should have to go through, nobody,
Susie Singer Carter:and especially our parents.
Don Priess:If, if, if you could tell, if you could just say, Here's, there's no magic solution to what you went through or what people are going through every day. But if there's any advice you could give to anybody, something that you would have done differently, something that you think you can actually do, is there anything that you could tell people that to avoid anything, and you may not, because it's such a difficult situation, but is that just anything come to mind?
Unknown:There is, you know, I have spoke with Rick and, you know, we've had couple detail, in depth, detailed conversations, and initially I felt like it was my fault, you know, and Rick kind of helped me through that, that thought process of understanding that it wasn't because my dad, he had asked me multiple times. He said, get me out of here. He asked me, you know, he would literally, you know, tell me why he was still cognitive and he was able to talk. He would say, Aaron, get me out of here. Get me out of here. And I'm thinking. You know, Dad, you just don't want to do what the people say. Just do your rehab come home, you know. And he begged me, I mean, he begged me to get him out of there. And I brushed it off dog, you know. I brushed it off thinking that the hospital was going to take care of my dad, you know. So if I could give out any tidbit of advice, it would be, when you have a loved one who is able to communicate with you and tell you what they're experiencing, don't take it lightly. First off, find out all of the information you can find out about what this situation is. You know, Google, like Susie said, I use a thing called Chat GPT. I ask chat GPT a million questions a day, but find out all of the information. And I'm not saying pull your people out of hospitals. I'm not saying that because it's not all bad. You know, even though it seems like this may be standard operating procedure. Now, they're not all bad, you know, but be informed. Get all of the information and make yourself aware. You know, don't be afraid to, you know, hug your family member and kind of look to see what you see, you know, just to, you know, do a visual to get an understanding of where you're at in the situation. Too many times, we kind of just let them sit there. We sit over in the other chair, and we talk to em from a distance and not get over and, you know, become part of the situation, you know, or part of the solution, if I can say that better. Um, so become active. Become very active in the whether it's a transition to come home or transition, you know, to move on to whatever's next, become active in your family members lives, and communicate, you know, share your stories so others will go through it. Who, who are going through will know what's what's going on. Because, you know, at some point, like I said, I don't have any kids, so I may end up in one of these places, you know, just like my father, I might be in that situation, you know, and if I don't have anyone to tell my story or to do anything to help me, so I don't experience what he did and what Susie's mom did, and what so many others are experiencing on an everyday basis. So it's up to us to just be active, Amen, yes, indeed, yes. That's, that is.
Don Priess:I mean, that's, that's all we can do.
Susie Singer Carter:And now for now, yeah, for now,
Don Priess:until we can get the system to the to the way it should be working, which, you know that that's a big, it's a big task. But, you know, people like you sharing your stories, that's, that's the first step to to that solution. So,
Susie Singer Carter:yeah, I mean, I want to thank, first of all, thank you, Erin, for sharing your story. I know, just hearing it, I feel like, you know, we, become like a family, you know, like, I know your heart, I know who you are. I feel you like you've made me cry already so many times today because I'm there with you, like I've walked, I've walked in your shoes, yeah, and I get it, and I know that so many people listening to your story will feel the same way. And so, you know, we are, we do have power, and that's why we're doing this documentary, and that's why we're talking to people like you, because if, if we are informed, when we know better, we do better, right? And, and that's, that's the whole point of the conversation, and the documentary is to inform so that we can do better. So we that we are armed with knowledge, and so everybody, please support No Country for Old people. It's so important, as you can see through Aaron's story. And you know, it doesn't matter if you're man, woman, blonde, brown, whatever you are. You know, a whatever, it's going to affect you. We it affects all of us. Aaron, how old are you? You're in your 40s, 4045 45 I mean, you know you're a young man in the middle of your life, and you had to deal with it. Not fair. Your dad was not an old, elderly man like you know, he didn't. He was that wasn't supposed to happen to him and shouldn't have happened to him. So we all need to band together as as a community, nationwide, a nation, a national community. And if you want to join us there, we're doing a people over profit movement. Go to No Country for Old people.com. You can sign up there, whatever your strengths are, if you want to organize, if you want to, you know if you can walk, make signs, whatever it is you've done this before. Help us out. We haven't we want, we need your help, and we're still raising money for the final parts of this documentary, and also for the movement. You can go to the national consumer voice for long term quality, for quality long term care, and we have, there's a link there. You can make a tax free donation and help us out that way. But in the meantime, take care of yourselves and your loved ones, because love is powerful, right? Don Yes,
Don Priess:it is. Love is powerful. Love is contagious, and love conquers all's we do. Thank everybody for watching, listening. If you like what you hear and see, then please subscribe and share and and we will, we will see you. Thank you, Rick my castle, thank you Rick mount casos, our special guest. And again, thank you, Aaron Adams, and he's
Susie Singer Carter:just special in sharing your heart, yes, yeah. Love you, Aaron. I'm sending you love and a big hug and thank you. Yeah, okay, take care everyone. Bye, bye. Take care bye, bye. You.
