Love Conquers Alz
Love Conquers Alz
JEN TREJO: The Power of Love and Advocacy - A Mother's Fight for Better Long-Term Care
How can a system meant to care for our most vulnerable turn into our worst nightmare? Join us as we kick off a special series of Love Conquers Alz episodes, inspired by our soon-to-be-released documentary, "No Country for Old People." We’re honored to have Rick Mountcastle, former U.S. attorney and co-producer of our documentary, with us. Rick offers his eye-opening experiences prosecuting nursing homes for fraud and abuse. Together, we hope to shed light on the urgent need for public awareness and collective action to combat the systemic neglect rampant in the long-term care industry. In this series, we will present personal narratives that serve as powerful calls to action, urging us to demand better care standards and advocate for systemic change.
In this episode, we feature the poignant account of Jen Trejo, who faced unimaginable hardship after her son Christopher (whose story was featured in the Netflix limited series "Painkiller") was prescribed OxyContin. From a mother's gut-wrenching moment of signing surgery papers for her son, to the neglect suffered within skilled nursing facilities, her story uncovers the severe failings of our profit-driven healthcare system. Jen shares the struggle of finding appropriate care for a loved one with a history of drug addiction and the frustrations of a system that prioritizes financial considerations over patient care. Jen also talks about the poor conditions in certain facilities and the lack of support for patients with more intensive care needs are also examined.
We also explore the transformative power of love and advocacy in these challenging times and how collective efforts have sparked progress, especially in addressing the opioid crisis and improving caregiving standards.
From the emotional toll of dealing with addiction and inadequate medical care, to the relentless pursuit of improvement despite resistance, this episode underscores the importance of empathy, persistence, and the human spirit in driving change. Tune in and join us in our mission to make a real difference.
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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 Alls 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, suzy Singer-Carter and me, don Preece.
Speaker 2:Hello everybody, I'm Suzy Singer-Carter.
Speaker 1:And I'm Don Preece, and this is Love Conquers Alls. Hello, Susan.
Speaker 2:Hi Donald, how are you doing?
Speaker 1:I'm doing great Good. How are you today?
Speaker 2:I'm good, I'm very good, I'm excited because today we're going to do something a little different, right? And it's really the beginning of a special series of Love Conquers All episodes which is inspired by our soon-to-be-released documentary. In case you haven't heard of it, it's called no Country for Old People, have we said it enough?
Speaker 1:Have we mentioned it? Have we ever mentioned it before? Did we mention that? I don't remember. Maybe once.
Speaker 2:Well, if not, it's a documentary, it's a film that pulls the curtain back on the nursing home and long-term care industry to reveal what is actually a cutthroat world of private equity, real estate investment, trust-backed nursing homes, and it also has a very powerful lobby that makes it their business to keep everything status quo quo. It's a profit over people business model in which understaffing is used to generate enormous profits that the owners tunnel through undisclosed related party transactions, aka money laundering, and, as a result, we have neglect and pain and suffering and also death, and that's become, sadly, the industry standard, and it's a standard that took an egregious toll on my mom's physical and cognitive health and ultimately cost her her life. I didn't really know this before this gentleman that I'm about to introduce. For this gentleman that I'm about to introduce, that we were in a full-blown systemic crisis and that it's one that's been causing insufferable consequences for decades, and not just for the elderly, for the vulnerable, for our disadvantaged, shall we say. But until I had this guest, which is Rick Montcastle on Love Conquers Alls, two years ago in 2022, when I was in the throes of trying to advocate for my mom, it wasn't until Rick came on and he told me. This wasn't just my story. This was actually a systemic crisis.
Speaker 2:Rick Montcastle just in case you haven't heard of him is a former United States attorney, an award-winning federal and state prosecutor. He prosecuted Purdue Pharma for fraudulently marketing OxyContin and he was portrayed by the actor Peter Sarsgaard in the Emmy award-winning Hulu series miniseries Dope Sick. In the Emmy Award-winning Hulu series miniseries Dope Sick, he also investigated and prosecuted nursing homes for fraud and abuse for many, many years and never saw any significant change. Rick is also the co-producer of no Country for Old People and we're so glad that he is, and he is also today's special guest host. So welcome, Rick. I'd like to welcome you on as's special guest host. So welcome, Rick. I'd like to welcome you on as our special guest host today. Thank you.
Speaker 3:Susan and. Don, yeah, I'm doing great. Great to see you guys and thank you for having me on. This is a very special interview and I'm excited about it. I'm looking forward to it.
Speaker 2:Right about it, I'm looking forward to it.
Speaker 2:Right, I mean, we today's guest.
Speaker 2:I mean, I think, the reason, before we get into introducing our guests, I just want to say that the reason why we're having these kind of out of a little bit of outlier episodes is because while we were doing these documentary, we really realized how important it is to educate the public about what is actually happening in our country's long-term care facilities, as well as our skilled nursing facilities, and we wanted to share some of the powerful stories that we didn't include in our documentary, from real people, real families, who have tragically learned the hard way, like I did.
Speaker 2:And we want you guys, the audience, to know that this is not just somebody else's unfortunate story, because it really is all of our stories. We're all going to be ill at some time, we're all going to grow old, hopefully, and we're all going to be vulnerable and need help. So it's really important that we share these stories and we have a lot stacked against us the prejudice, the ageism, the ableism that plays a huge role in neglect and abuse, and also the fact that it doesn't really matter what our facilities are rated. The rating on the facilities are just marketing. They don't reflect what's actually happening within those doors. So whether they're a one-star, a two-star or a five-star, it doesn't really matter, because they're all run from greed, right.
Speaker 1:And that's the system. That's the system, yeah.
Speaker 2:So Don, would you do the honors?
Speaker 1:We have a very special guest today, and her name is Jen Trejo. Jen was blessed with three amazing kids and three beautiful grandkids, and on November 20, 2019, jen lost her son, christopher. He was 31 years old. Christopher lived in addiction for years after being prescribed OxyContin and every other opioid you can think of when he was a teenager, for his baseball injuries. After a few years, he was homeless, living on the streets. In 2018, christopher got very sick. Christopher needed heart surgery and, ultimately, a partial foot amputation. After surgery, christopher was admitted into a skilled nursing facility and that's when the real nightmare began. Christopher and Jen's story was also recently featured on their limited series on Netflix Painkiller, and it was truly emotional to see, and now we want to hear much more about this incredible and heartbreaking story. So let's welcome Jen Trejo. Welcome Jen.
Speaker 4:Hi Jen. Hi. Thank you for having me.
Speaker 2:Thank you for coming and sharing this story. That is heartbreaking, but I know that it will, as you know, that if we share our stories we can help other people avoid the kinds of situations that we ran into. And you know, I want to throw this to Rick, because Rick really is the one that that connected you to us and, and maybe Rick, you can just, you know, sort of talk about how that came into, how Jen came into your awareness and why we think it's important her story.
Speaker 3:Yeah, jen and I were just talking a little bit beforehand and we kind of first met and I would describe it as a dark crowded I guess it was some kind of Irish pub type of place where there was a dinner going on, and I think this was about december of 2021, right after the release of dope, the hulu miniseries, dope sick, right, and uh, I had gone up there. I was invited by Ed Bish, who was an activist against Purdue Pharma. Ed lost his son to an OxyContin overdose many years ago and so he's been an activist for 20 years trying to get justice for the families of the victims of Purdue Pharma and OxyContin their fraudulent marketing of OxyContin. And Jen was one of the parents there and she'll talk about how her son was a victim of OxyContin as well. She was one of the parents at this meeting and we were just kind of all sitting and talking and that's how we kind of got introduced to each other. And then we the next day we marched down to the department of justice to protest in front of the department and to demand that the department of justice prosecute the sackler family for for all the harm they've done with their company purdue pharma in in the fraudulent marketing of OxyContin. So that was our first introduction.
Speaker 3:And then, more recently, jen and I were communicating. Maybe it was on Facebook or something and she was. I guess I'll let her tell it. How did you reach out to me, jen? That caused us to decide hey, let's have you on this. Show me, jen. That caused us to decide hey, let's have you on this show.
Speaker 4:Yeah, I currently COVID-brained. I, you know, I feel like I feel like we've kind of corresponded throughout the years through Ed and you know, through different groups and different times that we were going to go to the DOJ, or you going or we you know who's going to speak. But this time, like I'm just, I'm very honored that you want to add this part of the story to your you know already sad story of what these places do to our loved one and the care that they receive. So I'm just really kind of grateful that that you're acknowledging that this also happens to younger people or to people who can't fight for themselves. And even as loud as I was, I couldn't fight hard enough for him either let's just talk briefly about christopher.
Speaker 2:And how did he he? He had injuries that he sustained from sports, yes, and from that went into he. He got addicted to oxycontin and then other opioids and and, and it spiraled out of control. Opioids, and it spiraled out of control, correct?
Speaker 4:It did. It spiraled out of control after there. I mean, you know, he was, you know, the protector of all and the big guy and he was a beautiful human and he never let anybody hurt anybody else. And so in that, you know, he, you know, would get in fights and he would get injured, and that, you know, he, you know, would get in fights and he would get injured, and I mean he's got screws in his hand from hitting a Marine in the head because he hit his girlfriend and Christopher was like no, so, yeah, it was just a long, horrible tale of a beautiful baseball music, loving, gorgeous human um and watching what opioids did to his life, just slowly, like I didn't see it, you know, right away, um, I just his behavior just started to change and his hygiene started to change, or just certain things started to change, and I was like what, what?
Speaker 4:Like what's happening with you, you know? And and yeah, it just kind of know when that prescriptions wear out and the pills get too expensive on the street, obviously that turns into heroin, that turns into map, that turns into whatever they can get their hands on at the time, right, and you know, back in those days in 2010, 10. Um, it was his fault. You know what I mean. The addiction right was his fault and it was his choice. And why should we feel sorry for him? You know, this was his choice and this is I learned tough love. That's that's how I learned to deal with this person that I loved more than anything, and and yeah.
Speaker 4:So he's a victim, so he's a victim from one system.
Speaker 2:Yeah, so he's a victim from one system, which is the pharmaceutical right, that, that, that sector right. So he becomes that a victim of that and then a victim of the health care system in general, because there's a stigma against people that are drug addicts and I say that from experience because my brother also was an OxyContin addicted person and he lived in my home for five years. So I helped him get clean and it wasn't easy and I don't think it worked, to be honest with you, but I so I have some experience in that and I know how well that they can hide it for for quite a long time.
Speaker 4:It was all right time yeah, yeah, yeah, and it wasn't until it got cut out of control that, yeah, he, just because it's gradual. Yeah, it's great, it's, it's. You don't. It doesn't happen one day. And all of a sudden, oh my god, you're addicted. And look at all this behavior.
Speaker 1:Because it's gradual. Yeah, it's, yeah, it's. You don't, it doesn't happen one day and all of a sudden, oh my God, you're addicted. Look at all this behavior. It's so gradual, you don't even Well, they have.
Speaker 2:They have to hit rock bottom. They have to hit rock bottom. That's when we found out I wish that so many of the times it and right now understood was his. The ultimate was his bottom right. Yeah, so I want to jump to when he entered into skilled nursing because he needed a skilled nursing right and and so after you got the call from his girlfriend's home and they were telling you that he's going to die, and you do, get him into a hospital for surgery. So let's start from there.
Speaker 4:So they get him, we get him finally to the hospital, him finally to the hospital. And um, um, thank god, I had a girlfriend who was one of the er nurses at that particular hospital and she was there because they, he wanted to leave, and um, and they didn't let him leave. And so, uh, fast forward, um, his mitral valve had blown and he needed heart surgery, and the cardiothoracic surgeon at that particular hospital refused to do it. And so that's when I first started to learn a little bit. What do you mean? Why won't you do it? Well, you know why. Like, all of his valves were leaking, but the mitral valve had blown, and it had blown some time ago because he had been throwing strokes every time, his heartbeat, and so his legs were probably that size, with red bumps everywhere, and his heartbeat was pretty much non-existent. So the next day, they, they, they tell me that a surgeon has agreed to do the surgery.
Speaker 4:There was a time in that period where the suffering had gone on so long and for so long, and I think it's a really important thing for me to say is that when they brought me the papers to do the surgery, I almost didn't want to do the surgery. I almost just wanted to make it stop, to let him go, because it was just. I can't even explain what it was to see this once beautiful human in this body. That was not in, and um, so I, I signed the paper. My daughter told me that if I me that I would never forgive myself. So I did, and we proceeded to sit in the waiting room and wait for eight hours and it worked.
Speaker 4:He was on life support, but it was funny to go back a little bit. For about a year and a half he had been limping on one of his feet and his foot always hurt. Every time I would find him. You know, my foot hurts, my foot hurts, my foot hurts. He couldn't wear shoes. It was horrible, and as the blood started flowing throughout his body, his right foot literally turned black. It had been dead all that time, and so the pain that he was in I can't even imagine. You know before and after the surgery. So let me see.
Speaker 2:Can I ask you something? When you said, you had trouble signing the paper and I understand that too could you look at him and say he wanted to live Like? Could you see that that well, so energy.
Speaker 4:I don't think he ever thought in, I don't think he ever comprehended that he was going to die. I don't think that was a thought that he had. I just think that he had accepted this life that he was living. And it wasn't until we were all praying, my pastor had come and we were all holding our little family around his bed before they took him for surgery. And he woke up during the prayer and just started crying I don't want to die, am I dying? Am I dying? I don't want to die. And so we were like no, no, no, you're going to be fine, no, you're gonna be fine, you're gonna be fine. And um, so that was like the first time that I think he kind of realized.
Speaker 2:It, kind of set in a little bit what was actually happening right and so, yeah, that's so important, jen, because it it it gives you the decision, it puts the decision there.
Speaker 2:So, like for me and my mom, who didn't speak at this point and I had to convince people that she wasn't ready to die yet, because I would know, because we spoke without words in many different ways, and so you know, I had to make that choice to say you know, I said I'm not stupid, I wouldn't keep her, I don't want her to suffer and live if she didn't want to go. I don't know, and I certainly did when she did die. But I think that that is helpful to navigate. So I'm saying I'm prefacing this because when you get into the skilled nursing, I think it's important that the audience knows that your son did not want to die nursing.
Speaker 4:I think it's important that the audience knows that your son did not want to die, no, no. And after his surgery so after his surgery, before his amputation, he had gotten very restless, he wanted to get up. I mean, he's been on the street for years now and so he's not used to being inside, he's not used to having rules, he's not used to any of those things anymore, uh, and so I don't think the hospital was really equipped to deal with that, and so he was moved out of cicu way before he should have. I to say that all of that happened so that I could reconnect with my son for the few months that I had while he was in the hospital and in the skilled nursing before he left, and I think that that was for me, so that I could spend time with him.
Speaker 4:I don't know if that makes sense, um yeah, absolutely yeah but um, so um, they moved him down to a floor that was not equipped to deal with him. They kept him so drugged, he had his fentanyl patch, he had his methadone, he had his Norco, he had his I mean, every painkiller that you can imagine, which didn't really bother me because, as I was watching his foot turn that color and also a toe on the other foot, like I literally couldn't in my brain imagine the pain that he was feeling. But they would keep him so drugged that they would bring food in for him and I would, you know, wake him up and try to get him to eat. And I have just the most heartbreaking video of him, just you know, slamming on the table with a mouthful of food, just not even awake, just ow, help me, help me, help me. On the table with a mouthful of food, just not even awake, just ow, help me, help me, help me. And then he would pass out again.
Speaker 4:And so, when they finally did the surgery to remove the partial foot and also the toe and the other foot, the surgeon did a really good job and Christopher started his physical therapy. Well, yes, he still had the fentanyl patch and, yes, he was still on all the drugs. But you could see a little bit of him coming back, like a little bit of a sense of humor was coming back, and I never left his side and so him and I were, you know, having conversation and and, um, you know he would start the physical therapy and, uh, and he had hope and I'd never seen that in all of these years, like he literally wanted and I have on video. He was like I have to, you know, get past this next step or they're never going to leave me here and I need to move on to the next step.
Speaker 4:I need to move on, you know, to get better and so, um, the nurse manager on the floor we were talking about, now it's time to move into physical rehab. Well, I didn't understand that a physical rehab meant a convalescent room. That didn't compute in my brain until she started giving me the list of the places that actually would accept him because of his history. And I mean, what do you mean, right? Um, he is a, you know, a 30 year old man who needs physical therapy for an amputation for his foot, to learn how to walk again, to learn you, you know, and um, no.
Speaker 4:So I fought and fought and fought and fought and fought with these people and finally got him in to a place that I felt was going to be good for him. And so they transferred him to this place. And when they transferred him to this place, and they were doing all the intake and everything, they said, oh my God, he needs blood, his blood count is so low, he needs blood, he needs to be in the hospital. And I'm like I've been trying to tell everybody he needs to be in the hospital. What I didn't realize is that I just signed his death warrant by doing that. They put him back in the hospital, they gave him the blood and now the place where we took him wouldn't take him back because he was not sick enough anymore, if that even makes sense.
Speaker 2:Rick, I'm wondering if you can chime in Like does that? I mean, my first instinct is to say that they wanted him out of there. So they said he needs to go back to the hospital. And then now they're not going to take him back because he's too high. He's too, you know, labor intensive. His acuities are too high. It's too much for them to take care of. Am I wrong, rick?
Speaker 3:Yeah, what I was wondering is whether they didn't did his history of drug addiction have anything to do with their decision. Some of those places just don't want to deal with that.
Speaker 4:Some of those places just don't want to deal with that. They didn't really say. The only thing that I can say was the doctor there was very stern and that he was not coming back. And so then here I'm, out on this journey, search through everywhere that's in driving distance of where we could put him, because apparently this is my job, this isn't the hospital's job, this is my job, and um, so that's crazy.
Speaker 2:So there was no, there was nobody there, there was no guidance.
Speaker 3:No, no, social workers. There's people.
Speaker 4:Yeah, oh I we would have screaming matches in the hallway, I. We would have screaming matches in the hallway, her and I. He's an addict. What do you want? Nobody wants to take, nobody has, nobody's equipped to deal with the attitudes, nobody's equipped to deal with it. Well, why not? Why not? Why isn't there a place? He's not the first one. He can't be the first person who needs this kind of assistance coming from this background. So where do they go?
Speaker 3:How was his rehab going to be paid for, and that might've had rehab going to be paid for and that might have had.
Speaker 4:Oh for sure, he had IEHP, which was Inland Empire Health, I don't know.
Speaker 2:It's like one step above Medi-Cal. Iehp is not the same as Medi-Cal, but they work together, and this is in California. Medi-cal is Medicaid for the rest of the country and it is a managed care plan which is, oddly enough, just for residents in Riverside and San Bernardino counties, which is here in California. We're both in California here, so it's interesting that it's limited to those two counties. Right, and I'm not quite sure how it differs from Medi-Cal or Medicaid. I'm not quite sure, but somehow I don't know. Rick, it sounds like it's an insurance company that has figured out a way to work with Medi-Cal figured out a way to work with Medi-Cal.
Speaker 3:Some of the Medicaid programs have gone to hiring basically separate insurance companies to basically administer Medicaid. So what they would do is they'll get money from Medicaid and get, of course, some sort of a profit for managing the Medicaid program. So in essence, it is in fact a Medicaid program. I mean, this is how the nursing or the skilled nursing facility or the rehab facility would look at it. Is he's another Medicaid patient, and then they would then look and say well, guess what? Medicare pays a lot more for older citizens who need rehab and it's going to be a financial decision for them ultimately.
Speaker 2:Really Totally.
Speaker 3:So I would suspect and of course I'm just speculating, but I suspect that the reason they didn't want your son in there was because the rate they would be able to get reimbursed for was lower, because it's a Medicaid type program was lower than what they would otherwise be able to get from other patients with insurance.
Speaker 2:They offloaded it on the fact that he's an addict and whatnot. That literally has nothing to do with it. That doesn't even come into play really. I mean, they're there to rehabilitate him for something. That's a structural situation, a mechanical situation which is walking again right.
Speaker 4:He's not there for rehab, and so the place that they put him was a place called Waterman Garden and it was horrific. It was horrific. So he gets there. They don't have his medication. None of his medication has been sent yet. They're gonna get it tomorrow and I'm like, I'm sorry, what, what? His medications are gonna run out in like two hours. The medication should have been sent with him. No, so then, so they put him in this room with three other people. Get a curtain. Um, he was up against a window. It was smaller than like a camping bed. It was, um, very small.
Speaker 4:His wheelchair would not fit into the doors of the bathroom, so he couldn't get up to use the restroom, and so he had to use the bottles. Save that for later. And so, and then I'm like, okay, well, tomorrow morning we're gonna take a shower. We're gonna. You know what I mean? We're gonna get up and take a shower. So I went and I opened the shower. Shower is full of trash, can? I don't think anybody's taken a shower in there ever.
Speaker 4:And so then I walked down the hallway past the nurse's station, and everybody just kind of stared at me and I'm like, I'm like looking at everybody, just like you know, my kids here now Like what do you what? What's going to happen? So I go to the physical therapy area and it's basically a storage area. There is no physical therapy here. Um, they have the bicycle, they have a ball. They have um nothing. They have no physical therapy, um, they have no physical therapist. They had no doctor on staff. He only came every once in a while. They had an rn that came in um twice a day. Um, getting a hold of the doctor was just, I mean, it was just from the, from the get-go it was. It was a nightmare and as the days went on, what would they?
Speaker 2:say to you? What would they say to you when you asked him to. If he could, where's the doctor? Like what would? What was their answer?
Speaker 4:oh, we'll put it. We'll put in a call, we'll put in a call or do you and I would go back.
Speaker 1:You want to take a shower? Yeah, or he wants to take a shower. What's their?
Speaker 4:answer he doesn't want to take a shower. We asked him this morning and he didn't want to take a shower. Yeah, or he wants to take a shower. What's their answer? He doesn't want to take a shower. We asked him this morning and he didn't want to take a shower. Well, he wants to take a shower now? Oh, well, it's not his shower time. We'll have to wait until tomorrow. Okay, and so he never took a shower that entire three months that he was in this place.
Speaker 2:That's horrific.
Speaker 1:So it was just a bed, a very small bed, just a bed. There's no rehab, there's no PT, there's nothing. There's no showers, there's nothing, it's just lay there.
Speaker 4:And they would sell cigarettes to him at the nurses, would sell cigarettes to him at the nurse's station. I'm like he just had heart surgery did like what.
Speaker 1:I'm sorry, yeah did they allow smoking in the facility?
Speaker 4:no, there was this little patio outside um that everybody would just sit there and smoke, and it wasn't until and smoke, and it wasn't until I think it was the maybe fourth week, maybe the third week that we actually saw the drug dealer walk down the hall with his backpack and subsequently would find a crack pipe in Christopher's drawer.
Speaker 1:So this is somebody who obviously is not working there. This is somebody who just came in Christopher's drawer. So this is somebody who obviously is not working there. This is somebody who just came in off the streets.
Speaker 4:And you would have to sign in. There was a gate. You would have to sign in and sign out when you left. So they knew and I told them and I went and met with the director of the place and was like this is unacceptable.
Speaker 3:What did they say? Was that the administrator? Yes, yes. What was the response?
Speaker 4:and the director, and they, they would say, um, he's very difficult, he doesn't want anybody to clean his area. They would blame everything on him, everybody, everything just went back on him. Well, he, he's here for physical therapy, he's here for you know, I had to get him his wheelchair.
Speaker 2:What happened when you told the administration about the drug dealer? What was their answer?
Speaker 4:Oh, that's not true. He's a family member of a patient down the hall Right.
Speaker 1:And the nurse, nurses selling cigarettes. Did you mention that oh?
Speaker 4:that's we're allowed to do. That they would have. They would have packs of cigarettes, the cheap cigarettes. They would literally sell them by the pack and by the cigarette.
Speaker 4:It's like a prison except not as nice so the day christopher left the actual hospital, his amputation scar staples were still in, but it looked beautiful, it was going to heal, beautiful, and we were just so hopeful, you know. So they took him into this room, this nurse whose badge was turned around, because I asked her to turn it around and she wouldn't, so I could take a picture of it. She wouldn't. They put on a waterproof bandage over the top of his foot and I was like no, that doesn't go there, that doesn't take that off, that doesn't go there. And she was like no, it's, it's what needs to go here for transportation. For all that, I'm all no.
Speaker 4:And I threw a fit and they wouldn't take it off and I wish that I would have ripped it off. I so wish that I would have ripped it off so he gets transferred. And I'm like can we take this bandage off now? No, that doesn't have to come off for 48 hours. I'm all, oh my God, take this bandage off his foot. It's waterproof, it's like putting a band-aid on a wound and you know what that looks like. When you take the bandage off, it's going to be all mushy and nasty. And that was the beginning of that. They took that bandage off? Did he get sepsis? It was the most disgusting thing. He they actually had to go in and dig out the entire middle part of his foot because the infection was so bad.
Speaker 4:And then they put him on a wound vac which was never cared for properly. They'd pack it all in there, and and then I would come in and I would be like, I'm ready, for you know, because I wanted to be there for every change. I was there for every change, and it got to the point where they were like, oh, he refused it today, well, let's do it now. Well, the nurse is gone, right, and I'd be like, oh my God, and so it just prolonged, and did you?
Speaker 2:go to the. Did you go to the um administration about that, about the wound care? I went to the administration, about everything.
Speaker 4:Yeah, I was in there at least three times a week complaining about this and that and the other thing, and at some point they were just like what do you? You know, do you want him moved? And I'm all. No, I want him cared for. Nowhere else will take him. So let's let's get this healed so that we can move on to the next step, Because we haven't even started drug rehab yet. I have to get through this physical rehab and I need his wound to heal. But his wound isn't going to heal because nobody's taking care of it properly, and so it just continued to get more and more and more infected until he needed his next surgery.
Speaker 1:And what's his state of mind at this point? Where? Where is he at? You know what? What is? Is he just kind of resigned to the fact that this is the way? I mean, where was he at at this point mentally?
Speaker 4:Oh, mentally, he checked out. He had already checked out. He had already disappeared three or four times. He would leave in the middle of the day and nobody would know where he was. Somebody would find him down the street.
Speaker 2:In his wheelchair.
Speaker 4:They must have kept him very drugged right in the beginning they did and I think throughout they did. I think that throughout I mean he got his a new fentanyl patch every 48 hours. He got his methadone right, however many times a day. He got norco, he got um, I forget what other medications he was on so he was for the most part.
Speaker 2:They kept him, you know, drug medicated, drugged so that. So it was easier to take care of him because he was young and not take care of him.
Speaker 4:Around his bed was just garbage and urine bottles that were full that I would go in and just be like I don't understand, like I literally don't understand.
Speaker 2:So there wasn't any oversight? Clearly there's not much oversight anyway, but to get people to go and really take a look at what's going on there, your chances are none to zero, right.
Speaker 4:No, nobody cared, Nobody cared. It was just so frustrating to just watch the incompetence of it all and to not have anybody give a shit what is happening and to watch his butt just.
Speaker 2:I'm trying to paint the picture for people listening, because you know, my mom was in a five-star facility but she also had a stage four wound that was being ignored, yeah, Okay, and that it was like you know, well, this happens and she's going to succumb to that wound. Well, yeah, anybody would if you don't take care of it right.
Speaker 2:Yeah, so the difference between my mom's five-star facility to this I'm imagining it's a two at the most, a two to three star facility, or one right and and what kind of and and you know, and there's, there's all kinds of stigma, like we talked in the opening, which is ageism and ableism, and then there's other kinds of prejudice that goes along with it. So were there other family members when you were there? Did you see other family members there? I mean, were they just used to not having people advocating and they had been getting away with all this? For you know, that was just Truth.
Speaker 4:I never heard anybody else um truth, I never heard anybody else complain. I never heard anyone else complain. And um, the people that would come visit um would just come and sit out on the patio and smoke with these people, and um, I never really saw anybody check out. I saw them die. Uh, two of christopher's roommates died while he was there, which was also very hard for his, you know, mental health. Um, god, yeah, and um you know what, jen?
Speaker 2:just to I, just to validate what you're saying. Like, throughout doing this documentary, I got so many people talking like, reaching out to me, and in fact, even my daughter's friend, most recently, her father, who was a young guy. They had just gone into rehab here in LA for a stroke and it wasn't, you know, he was not given a life sentence, he was going for a rehabilitation. And she said can I talk to your mom? Because, like every time I go in there, my father is like less a human every single time and no one's taking care of him yeah he did die and he died and it's and this happens a lot like I heard it from other people like skill seems like it.
Speaker 2:It happens quite a bit in skilled nursing and yeah, you know it's horrible.
Speaker 4:I mean, even the place where my grandmother was was horrible. You know the places where I've been with family members or to see you know, I have not been to one, except for the first one. Christopher was at that.
Speaker 2:With that that you were like wow, this is nice how long before christopher was admitted into skilled nursing to when he passed away um over a year.
Speaker 4:Over a year, we lost christopher back to the street as soon as his foot healed he did, it did heal. He left in the middle of the night before the rehab conversation.
Speaker 2:So how did it heal? How did that happen so?
Speaker 4:it was a wound care, the wound back, and it was just an everyday fight to make sure that you know the dressings taken out, that it was packed correctly.
Speaker 4:I was lucky if it got done. You know, four times a week by somebody who would just like lay his foot on like just a plastic bag on dirty blankets and lay his foot on a plastic bag and and I would just you know, you just sit there and you're watching, you're like this isn't even a sterile like field. You can't like lay down a pad or, and they would just I can't, I can't even put into words really, they didn't care, she wasn't qualified, she didn't use sterile equipment, she didn't. She didn't use sterile equipment, she didn't um, she didn't remove all of the packing all of the time, and so it would just continue to get infected and it just it was. I think it was a three and a half month period of time. Yeah, three and a half month period of time, while he was in this place just trying to get a wound healed that should have healed in three weeks.
Speaker 2:Right, had they just taken that damn band-aid out, right um so three, so it finally did heal, though, which is amazing, but that's because you were there every day and you were having to exert so much pressure, which is so hard, because I know what that's like they hold and also, you're the enemy there and everyone's hating you and yeah you know, you're just a the thorn in their side hated me yeah, so he was discharged. No, no he escaped.
Speaker 4:Okay, they called me in the middle of the night and told me he was missing and that they had reported him as a missing person. Okay, you watched the hope drain out of him. You watched it, I watched it. We had hope for a minute, for just like a window we had and we hadn't seen in years, and I don't think he'd actually felt it in years. You know, his brother and sister were coming to visit him. You know, his niece and nephews were coming to visit and, like, we were there all the time and it was, you know, time spent with the family that we hadn't had in like six years. You know, and um, and I, I mean, I just I have to believe that, even though it was an absolute nightmare, it was just for me now to have that time with him, and I just think that it's absolutely outrageous that that's where people are put. I think, um, like you said, a five-star place. Your mom still had that bed sore, right, um, I think that's.
Speaker 4:What do they have to do? You know what I mean. What do these? What do they have to do? You know what I mean. What do these LVNs have to?
Speaker 2:do. That's their job. They're only in charge of life. It's their job. It's why they're there.
Speaker 4:They only each have six patients to take care of, like clean them, it's just.
Speaker 3:That's part of the problem, that they are understaffed, and so I guess at some point they have to make a decision themselves. Am I going to try to run myself ragged trying to take care of more people than I can possibly take care of, or do I throw in the towel and just collect my paycheck? And you know, there's that kind of kind of dynamic at work because of the business model that features understaffing as its primary linchpin.
Speaker 2:So when you said you found that he had hope, right, you said the first time, like you all felt this glimmer of hope, right?
Speaker 4:Yeah.
Speaker 2:And then you saw it go away at some point. At what point did you see it go away at some point? At what point did you see it go away?
Speaker 4:I think the first time that we saw it go away was when they took the bandage off. Okay, and I think that was where my fight started, like really my fight started, and where he was just like, oh, you know, I can't believe that this happened. Why does it look like that? And it was just staples with white skin coming up in between each one, and it never got better, it just got infected and it surrounded like the infection came out of. Oh, oh, it's horrible. I just can't imagine what he felt. I can't imagine how he felt.
Speaker 4:Um, you know, I would get million of texts a day. Mom, when are you coming? Mom, can you bring me snacks? Mom, can you bring me? Mom, can you? When are you coming? When are you coming? And I'm like I I'll be right there. You know what I mean. Like I would spend in the beginning, well, in the hospital. I spent almost 24 7 within, yeah, um, and then, when he went to to this place, I would be there for, like you know, six hours a day probably when he escaped, though when he got out, jen was hit.
Speaker 2:Do you think that? That? Where? What? Where do you think he was going? Was it just fright flight?
Speaker 4:I think he was. Well what time he was seen up where he used to be. So I'm sure he was drug seeking. I'm sure yeah.
Speaker 2:So he wanted to self-medicate.
Speaker 4:Oh, for sure, I'm sure.
Speaker 2:So he was depressed and he wanted to get out, and he didn't mention that to you. He didn't, you didn't no.
Speaker 4:I started noticing his eyes change a little bit and I started noticing a little change in him and a little attitude. And I was like oh God. And he was outside one time and we went through his nightstand and found, you know, a crack pipe in there and you know what do you do besides scream, you know.
Speaker 1:And, at the same time time, you can understand it.
Speaker 4:You can understand, you know him trying to escape mentally, but I'm, but at the end at the same, yeah, and all of that, and and also at the same time he is so drugged already but it wasn't the same thing, I guess I don't know. You know what I mean? I can never say that I could go inside his brain and say what he was feeling or what he was thinking. I can't do that. I've never.
Speaker 4:Opioids make me sick, so it's not something that you know what I mean, which is why I never really understood it?
Speaker 2:Yeah, me either. I mean, I think that it's so egregious that you know you take somebody with a preexisting condition. We know that drug addiction is an illness. It's not a choice, right, like alcoholism is not a choice. So you take somebody into a facility that's a health care facility and then you just treat them one size fits all, right. So you just start plowing them with opioids that he's already addicted to or consult with a specialist or somebody that would say here's what we do with people that are trying to. You know, there must be a better way. I'm sure there is a better way to manage his pain, as well as his addiction, without contributing to it.
Speaker 4:I don't think anybody really was concerned about anything that has to do with this addiction, I think that's, you know, when you're in a place for so long after you were only supposed to be there for a short period of time, and you're there because of lack of care. And you're there because of lack of care and you're there because of lack of concern, lack of staff, I mean, whatever the excuse was as to why his infection was allowed to get to the point where he needed another surgery to have more of his foot removed. And then now his foot's like wide open and we have it on, you know, a wound back to close it, and now it's like this nightmare and you know, his legs are all swollen again and and you're just looking at him like is he gonna die? Like is he gonna? And I would ask them, is he gonna die? Like where does this road lead? You know, and you know, finally it just started closing, like little by little by little, the big hole that was like probably that far down into his foot that they had removed. Um, you know, and when it was closed enough, where he could, you know, put on a sock over it? You know, when it wasn't swollen or he left, it was just enough.
Speaker 4:And sometimes I feel like you know it's my fault. I didn't do a good enough job. I should have brought him home, I should have been able to take care of him. I should have, I should have, I should have, you know, and it's the same thing with when, like he was on the street, I should have brought him home, but he wasn't Christopher anymore, christopher anymore. He was another person that I lived by myself and I didn't. I was afraid, I think I was more afraid to bring him home and to be the one in charge and, and you know, you weren't equipped to do that.
Speaker 2:That's not that's that's as a mother. That doesn't mean that you't equipped to do that. That's not that's that's as a mother. That doesn't mean that you're equipped to handle that kind of situation, which requires experts, Right, and so you need to give yourself grace about that because that's not your job. You know that's not what you train to do, that it takes somebody that really understands addiction and from a, from a you know a medical standpoint and it it. That's not something you go in and talk somebody out of and and stand vigil over them. You have no control over that zero. It doesn't. You can love them all day long. It does.
Speaker 1:It's not going to change and our system doesn't, doesn't support that, our system doesn't support you as a mother and say here's some options, here's some viable options for you to right.
Speaker 2:You have again. You have to be wealthy again. You have to be the one percent who can go to. You know what? What's it called on?
Speaker 1:the beach. You know the forty thousand dollar a month passages or whatever it's not passages.
Speaker 4:Yeah yeah, it's not fair, it's not right, it none of it's right, and this you know. The situation has been going on for so very long, whether it be elder care or whether it be. You know this. Why aren't we better? Why haven't we learned how to be better? Why is it all about the money? Why does nobody care? Why did you get into this field if you didn't give a shit about the actual human being sitting in front of you? That's hurting.
Speaker 1:Why and that was my question all the time- it's the money, because the money is what drives the decisions for these people Not everybody to get into the system, but that's what it does. And, as Rick states in our documentary, guess what people? It's our tax dollars that paid for the care that your son. When I say care, I put it with huge air quotes around it was given. Our tax dollars are paying for that air quotes around.
Speaker 2:it was given. Our tax dollars are paying for that Right. And I just want to also add I want to add this as a caveat, which we touch on in the documentary which is the fact that there's a lot of really good providers and frontline caregivers who can't do their job, that they want to do Like they did go into this, that field, because they really cared about people, they really want to do it, and then they're there because of the way that the business is is structured, they fail and they can't do the job they want to do. So many of them leave the field and, like one of our doctors said, the ones that stay become part of the culture and a culture begins to form and then they adapt to that culture and then it it, it normalizes it.
Speaker 3:they get, so they don't feel like they're do.
Speaker 2:That's right, that's right and they have to because they either get moral injury, uh, every day, and go home and can't, you know, want to kill themselves literally, or they leave this, they leave that business, they leave that field that they loved because they can't work in it it's too difficult, or they go numb and they go numb and they stay and go numb.
Speaker 1:So when you go to them and say wait, how? How they just, they go numb. They shut off in order to protect themselves.
Speaker 2:I really thank you for talking about this.
Speaker 1:It's just you know we're not going to solve this problem today. I'm sorry I can't put it into words better. No, you're putting it into words Because it's so hard to process. It's really hard to process as a human being.
Speaker 2:I get it. When you're in it it's just, first of all, it's overwhelming and you don't know your rights and there's just so many levels that are going on at one time. It's just overwhelming. I get it. But you did what you did and you did a stellar job. You did a stealth, you did. You did because I know how hard it is to advocate and it is brutal. It is nobody listen. Nobody listens.
Speaker 3:They nobody, I just got, we'll look into it.
Speaker 2:We'll look into it. We'll look into it. We'll look into it. Yes, yes, that's it. I heard it all day long. We'll look into it. Okay, now it's been three days, did you look into it? Still looking while someone's suffering?
Speaker 1:yeah, and you tried and you cared, and that's more.
Speaker 2:You were there, you did the best you could.
Speaker 1:That's step one, because so many people don't have family members who try and care and you're speaking out.
Speaker 2:You've been speaking out and you've been up against, like I said in the beginning, two different crises and you got hit from both ends. You know, and here you are standing, and here you are talking about it and sharing this. Do you think this stuff is?
Speaker 4:going to get fixed? Yes, you do.
Speaker 1:That's our goal Wouldn't it be wonderful.
Speaker 2:Yeah, I think it's going to take us wonderful. Yeah, I think it's going to take a movement. I think we need to take it. Like you know, anything that's super important we have to as a, as a collective demand it. We can't, we can't go through traditional advocacy. I know it helps a little bit and I know that that you know, within the opioid advocacy, that you guys have been doing a lot, a lot of work on it, but it's still there and it's still you know yeah, I mean, it's just it.
Speaker 2:Just, you know you have to make gigantic noise, you know, and huge noise that that they just want you to shut the hell up, right, right. So I think that's what we need to do, just like any other movement that's been successful and it's going to have to. Like Rick said, it's not a one and done. It's going to be. You know it's an ongoing fight, but we have, I mean, look at how stupid they are with you know our climate. What's going on? I mean, people are just selfish and stupid and and so we have to shame people into doing the right thing, and it and you know it takes people like you and like me and rick, and people that are angry and that that are sick of it and are are hurt by it. You and me, me, we're hurt by it, deeply hurt.
Speaker 1:And it may never be completely solved. But change first of all. Change is incremental. It takes time, but any change is better than no. Change it's better than no change, absolutely Any improvement is better than no improvement.
Speaker 2:I mean, honestly, can I just tell you something Like today. We had a watch party before this interview and one of the people that participated when I first started doing this documentary two years ago, I sort of got into the caregiving community through another film I did, which was a narrative, not a documentary, about my mom with Alzheimer's Very sweet, lovely film, real and very well received. You know, it's not, it doesn't ruffle anybody's feathers, it's not. You know, it's very, very embraced. And so, um, I remember in particular this woman, um, who had a uh, what is it? A clubhouse thing that turned that they used to have me on all the time as a guest for dementia care and you know, very, very much respected me and, and after I started this documentary, I literally they nobody would talk to me from that community and I finally got someone who said I'll tell you why. Because I said you know what's going on. Can I talk about my documentary to your audience? Well, no, you can't, and I'll tell you why. Because you're angry and you're wrong and you don't know what you're talking about, and on, and on, and on and on, and so you know, and that's what happened.
Speaker 2:So here's what I'm trying to say is that there she was today on this Zoom and I ended up in this. We went off into these like private rooms after to talk about, like you know, and then come back and discuss what's in the future how do we see the future, looking for nursing homes and there she was. Of course, as you would have it, I end up with her and she is so committed to helping us change. Now it was like a 180 turn and I thought, if I can change her, yeah, so that just gives me hope. And I know it's one person, but I'm saying that's the kind of thing we're up against. Is that people that go? No, it's not that bad, you're wrong.
Speaker 1:It's a one-off. You're an angry daughter, you're angry.
Speaker 2:You're just an angry. You're an angry daughter, you're angry you're just upset.
Speaker 4:You wish your mom didn't die. Right, I had a. I think my my most memorable was a lady who sat with me the entire time, christopher. Christopher was on life support. She was the nurse manager of the cic floor, um, and she would come in and you know, talk to me and my nurse, the head. The nurse literally stayed with me the entire time.
Speaker 4:She never went home, she never took a day off ever she was with me the whole time and her and I and the surgeon she would like, braid my hair and I would be laying on Christopher and we would be talking. And so when they moved him downstairs and he started, you know, waking up, I had the CICU nurse nurse manager take me into the hallway and tell me you have to stop, you have to stop yelling at people. You have to stop. If he wants help, he's going to get help. You can't get help for him. And I'm like what? And she was like no, he has to want the help, he has to ask for the help. You can't want it for him. So you need to stop or you're not going to be able to come in here anymore.
Speaker 1:That's ludicrous, it's insanityicrous insanity it's insanity.
Speaker 4:I was like what? And she was like no, yeah, so right.
Speaker 2:So you imagine somebody like that who doesn't yeah, now is made a flip the other way. So you imagine, like, how this is. This is why these stories are so important to get them out there, so that people see the consistency in the story, so they don't just, you know, write you off, yeah, and and because it's too hard for many people. You know, like I have friends who have gone through terrible things with their parents but they don't want to look at it.
Speaker 4:It's too hard I do only understand to the level of their own understanding, and that's really sad because you shouldn't have to have been through it to be empathetic, to understand it.
Speaker 2:Yeah, but yeah. So that's why I'm doing this movie. That's why, so that people can see it from a human point of view, to really humanize it. So that's why I'm doing this movie, that's why I think it's great you can see it from a human point of view, to really humanize it, so that you don't, they can't just go well, they're old, well, they're going to die anyway. Well, he was a drug addict, he was going to OD anyway.
Speaker 3:Who cares?
Speaker 2:Right, he's not worth anything.
Speaker 1:So I mean that's why these stories are so so, so important. So, thank you. Unless we thank you, unless we make the change, unless we make the change, this is going to be all of our story. We're all going to experience this. Yeah, on, at some level, in some way and we don't change it even if you don't care about it now, it's us, it's it's your. Take it you personally. It's going to happen to you that's what I know you.
Speaker 4:That's going to be our story someday, absolutely so.
Speaker 2:Thank you, jen. We really appreciate you. Thank you, jen.
Speaker 4:Thank you for reaching out and having me. Rick, it was really good to see you.
Speaker 2:Don and Susie it was really nice to meet you. Ditto, ditto.
Speaker 3:I'm sure we'll see each other soon Jen.
Speaker 2:I look forward to seeing you again soon. I wish you Washington again soon. Yeah, I love that you're still, that you're advocating and you're a fierce woman and you're out there.
Speaker 4:I have grandchildren now. I have grandchildren now 17, 14 and 11 and, oh my god you know like this, me too 17, 14, and 11. Wow, oh my God, you know like this has to. We have to fix something Right, or I'm afraid, like my grandson last night you know, I have him on my, find my phone, find my, and I'm like I call my daughter. Where is Evan? And she's like he's at his friend's house. I'm all where he's all.
Speaker 4:I don't what, why, and I go. Do you know where he's at? Do you know the people he's with? Do you know? Do you know? And she's all you need to calm down, I'm all. No, you need to know Because I'm just like psycho about it. You know, and so, yeah, well, that's understandable, we have to be out there and be loud, and we have to scream and we have to still, you know, educate, because children are growing.
Speaker 2:Educate, educate, educate, educate, educate yeah yeah, for sure, and really show the love, like you. That's, that's important. People will. People will respond to that. The love that you had for your son and the love I had for my mom, you know, yeah, so, um, carry on and um, well, I was just gonna say well, there's a reason for that and that's because love is powerful, love is contagious and love conquers alls.
Speaker 1:And we definitely thank jen, our special co-host today, rick mountcastle. Um, if you want to know more, thank you, we will have all the information about Jen and Rick and us in the show notes and check back with us, because we're going to have some more stories.
Speaker 2:We're going to continue to tell stories and if you have a story, you can go to NoCountryForOldPeoplecom and there's a place you can upload your story and if you think that you'd like to share it on the podcast, let us know and we'll take a look at it Because, like I said, we want to make change and it's going to take a lot of us. So let's do this, let's do it.
Speaker 1:Right.
Speaker 2:Jen, let's do it All right, take care. Thank you, let's do it. Let's do it all right, take care. Thank you, take care. Bye everyone.
