The Medical Detectives - Katie & Steve's Story Part 2: The Wife Who Wouldn't Give Up

Episode Date: August 13, 2025

A love story becomes a masterclass in advocacy. In this gripping part two, Katie takes us inside life with a rare brain disease, and shows how fierce care, ingenuity, and impossible choices collide with a messy healthcare system. You’ll hear the moments that test a marriage, what really happens at end of life, and how one night’s escalation changes everything. Most importantly, you’ll leave with hard-won wisdom of how to protect dignity in hospice, what to ask about palliative sedation, and how to advocate without losing yourself. Come for the story; stay because it might change how you show up for the people you love.Interested in supporting Katie and her cause? Links to her products and foundation are below!chieftedder.orghttps://www.medicalert.org/ Have a medical journey to share? Email us at [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

Hello, Erin. How are you doing? I'm doing great. I am just waiting with Bated Breath to finish the rest of our episode. I know. This is, this is such a great story. And if you're new here and haven't been listening along to the first episode, this is part two of Katie and Steve's story. Now, Katie and Steve were this lovely couple. They fell in love. And after about 20 years of marriage, Steve started experiencing some issues. So he had some eyesight challenges, some handwriting challenges, and even some balance issues. And this led to a whole host of misdiagnoses, things from carpal tunnel to even just being told it was stress, which was relieving to hear that men also get told it's just stress.

Or just aging. Or just aging. Yeah, you're just getting older. and even Parkinson's at one point, but what it eventually ended up being was a condition called PSP. Now, Aaron, for those listening for the first time, can you just give us a high level overview of what PSP is? Yeah, so PSP is short for progressive super nuclear palsy, which the name implies something wrong with the eyesight and progressive meaning getting worse over time and then palsy affecting your muscles and your movement and your balance. So with Steve, he had issues with falls. He had issues with he couldn't see things in the corners of his eyes.

And this is, again, a very rare disease. But something if someone was able to connect all the dots, you could come up with this diagnosis. At the end of the last episode, we left off where we heard what Steve's diagnosis is. And now we are about to start our wild ride as to what happened. happens after they get the diagnosis. And this is kind of a rare story for us because usually we get the diagnosis and there's a little bit of catch up after it and the story's over. But let me tell you guys, the story has just begun. I would say the wildest parts of this story are in this episode. So

buckle up. So as things progress, I'm like, this is not anything related to Parkinson's. This is not anything related to Parkinson's. This is more like ALS because he's losing the ability to do everything, and it's happening so quick. When asked caregivers on that page, I'm like, do y'all think this is more like ALS and not like Parkinson's? And they were like, absolutely, it's so much more like that. Even though there are similarities that you can't lump them together because it's different, but how fast it comes on and how much it takes away from you is so much more like ALS than Parkinson's. and the caregivers call this the disease that is derived from the pits of health because it's just so bad. It's just so, so bad.

June of 23, that's when he ended up. He finally quit working at age 72. He had to quit working. I can't believe that he stayed working. Well, I had modifications on his computer. I had reading apps that could read his email to him. And I had speak to type apps on there. But then when his speech, this was one of the worst things, too.

I could hear him in the other room because he was still so loud. I could hear him talking to his computer to try to type an email. And he would have to say the same word over and over again because it didn't understand him to type it. That was pitiful. But we tried everything to keep him as normal as possible for as long as we could. Even though we were consumed by this disease and everything about it, we didn't talk PSP every day. I made the phone calls about the appointments when he couldn't hear me. I stayed up late at night researching when he wasn't around, and I didn't tell him a lot of the stuff I saw.

The balance issues were coming much, much more difficult. We went from the walking stick to a walker. I had three or four different kinds of walkers. I had an inside walker. I had an outside walker. I had a stand-up walker. Just everything I could find. everything that was recommended on these caregiver pages.

Since my stepdaughter and I didn't want to accept PSP as a diagnosis, she really wanted us to go for another second opinion. So when the doctor came in, he did a lot of the same test, and then he did a few more. And at the end of that, he said, I agree we are dealing with PSP. and there's subsets of PSP. And at this point, I don't even know what he said because it didn't matter.

PSP, all the subsets, it's just same outcome. And now that we'd had two specialists say, Progressive Supernuclear Palsy, I knew Steve being a proud man and just a force. He was going to take his decline an eventual death from this. It was not going to be easy that he would have wanted to go out on his own terms.

But honestly, you guys, I worried every time I left the house, I thought, well, when I come home, I'm going to find him and he's going to have done something to himself. I worried that. I mean, we have firearms, and I thought he's just going to have enough. And one day I might find him. And so I brace myself every time I came home until I saw him. until I could lay eyes on him or until I could see him on that mower when I drove down the road

and then I was relieved that he hadn't done anything. But I know that was always in the back of his mind, even when he couldn't talk anymore, I knew that he didn't want to be like that. He didn't want to be a burden. But with the apps for the reading and everything else, he found great pleasure in maintaining our property. And when people come down the road, they're like, oh my gosh, this is like a golf course down here. And he just really loved having people compliment him on that.

And my dad rigged up a way for him to still get on his mower. So he would get to the door on his inside walker. He had this way of getting down the three steps at the back door. And then I had the outside walker at the bottom of those stairs. And then he would walk over to this pole that I had cemented into the ground with the handrail on it. and I had parked the golf cart right next to that, and then he would drive down to the barn, get off of the golf cart, grab onto the handrail system that my dad had made in a platform. It was like an L-shaped platform with the handrails that he could just walk sideways on,

holding on to him, and then he would get right above the lawnmower, slowly step onto that, and then he could sit down, and then he would just mow very, very slow for hours. and he sat really crooked when he was doing it. And I'm like, why do you sit like that? And he said, well, so I can see where I'm going because he couldn't see on that one side. So he would have to bend really awkward to see what he was doing. But he was determined to do all his work.

And then one day he had such a difficult time coming off that mower. I was like, that's the last day that he's going to be able to do that. But that kept him going for a very long time. what my dad had built for him. Also, through all of this, Julie was researching clinical trials and she found one, but the closest one was Richmond, Virginia, which was a three and a half hour drive. Again, another waiting period for that, but we got in for the assessment for the trial. Great group of physicians included speech occupational. It was this whole team of doctors, and then it ended with the neurological specialist assessment.

Again, all the tests. Then the last step is to go through another series of tests that they score you on for the trial. And it involves a lot of the tests with the vision and then with balance. And one of the last assessments was they sat him in a chair with no arm. arms. And they said, stand up without using, you had no arms to help you stand up. He couldn't do it. You had to score 40 or below. He scored off 40. And I was heartbroken to begin with and just cried because I thought that was our only hope, but it was a 60, 40% chance you would get the drug versus the placebo. It was going to be a year-long trial with multiple appointments, long

traveling and in a way after I was disappointed in a way I was relieved and I knew he was because again he just did all that just for me to see if there was any way to help with this and then after that discussion on the way home we never talked about the failure of that trial again but we tried yeah there was a great episode on this is us the TV show with the three generations. And at the end, Rebecca, it's clear that she's experiencing dementia and her children really want her to be enrolled in this trial. Like, why wouldn't you be in this trial? Right. This is your hope. And it was not what she wanted. And the children were, they were just so upset. Like, can't you convince her? You know, and I think we have to go back to

it. It only works if it's the person, the patient who wants it. And they can't do it. And they can't do it just for them to hold on for others. And so, I mean, in this case, you weren't even given the opportunity because you weren't a candidate. But I think it's a hard thing to swallow for the caregivers, right? Because you want to hold on for as long as possible. And sometimes that is even at odds for what the patient really wants. Exactly. Okay, back to our dogs. Steve was, no dog has been my dog because even the couple that he got for me were daddy dogs. You know, I have one, his name is Roscoe. He looks like a big black bear. He is my husband in a dog form. They are so much alike, but they have their routines. And I tell people,

this is the dog's house. They just let me live here. But seeing in these dogs have this very strict routine every morning. They went to the kitchen bar. They had carrots and then they had treats. And then he insisted on feeding them every night because I never did it right. I didn't have enough water or put the right medicine supplements in there. So that was his job. And then every night he took a couple apples and used one of those apple cutters. And then he would share the apples with the dogs. Every night they would line up. But through this whole sickness, every night I would watch him cut those apples. And I could tell it was getting more difficult every day to do that. And he used every bit of strength he could to push that thing down to cut those apples. And then

one day he just couldn't do it. And without saying anything, as he would get their treats and put him on his walker. I would go over there and I would cut the apple and I would put the apples in the bowl and he would walk around and he would get the bowl and put it on his walker's feet and then he would take it down to the bedroom where they would line up under his bed and they would share their apples still. And so that was a really hard day when I had to take over that. Then I told you he didn't want me to help with the shower but eventually I had to help with the shower, had to wash his hair, had to just do everything, which was he was very reluctant of that. But in a way, even though we couldn't talk to each other very much, it was

sort of a bonding time, you know, as an intimate kind of thing in a weird way. I really looked forward to those times. Another thing with supernuclear palsy is that it makes your eyes close involuntarily and you can't open them unless you force them open. So when he would wake up in the morning, he would wake up but his eyes would stay closed. And when he would go to bed, he would have to lay like this so he could keep his eye open because even though he couldn't read, he could still see the TV okay. But he would have to prop his eye open to keep to watch that. And it also makes you very sensitive to light. So for the last few months, I had to put blackout curtains in our house, and it was like we lived in a bat cave. It was depressing as hell, y'all. And we had to wear these,

his regular glasses didn't work. He had prescriptions sunglasses. They didn't help. I found out through the Facebook page that if you could get these orange tinted glasses, that might help. And it did. I ordered that. I ordered everything that they thought could work for every single. symptom to try to make life as manageable as possible. Some things worked, some things didn't. But it was really hard during that blackout period because, you know, when it was time for medicine, I was afraid to turn the light on. I didn't want him to hurt his eyes. And I couldn't read directions on things without having to go in the other room. It was just, it was, it was bad. But then another thing with the palsy part of this is that not only does it break down your arms

and leg muscles at this point he had no use of his right dominant side he couldn't use his right arm his leg would freeze he had to learn to eat with his left hand i had specialized utensils that bent and special plates and bowls where it would scrape up his food he never ever let me feed him he would make a mess but he fed himself but the palsy part also includes the difficulty with swallowing dementia, the cause of death with a lot of PSP patients is complications from falls. Like if you fall, break a hip, you could get an infection or complications from that. Or with the choking because you can't swallow, the risk of aspiration pneumonia is very high. And through this Facebook page, I learned that if you sipped on pineapple juice, that could help.

There's an ingredient in pineapple juice that is in nothing else. that can help. So that did help. Luckily, he loved it. So he had a sippy cup of pineapple juice wherever I could put him. And then there was another kind of, I think it was called Mullian drops that with a dropper, I could stick down his throat if he was having a choking episode and it would help break up the mucus or whatever was collecting in there. And it would ease that choking sensation. But those times were extremely scary because the last thing he ever wanted was to go to the hospital. So deteriorating so much quicker than ever thought possible, his daily talks with, with his daughter had to stop because she couldn't understand him anymore on the phone. And that

was difficult because they both looked forward to those talks every day. I mean, just about little silly stuff. Dad, I save so much going to this grocery store versus this grocery store. You know, and Liam's doing this in soccer and made a 99.9.9 on this test and still argued with the teacher over, you know, whatever. It just, they were very, very close. And again, I told you that he woke up like 5, 5.30 every day, but he was sleeping longer every day. And he needed help getting up every day.

And so at one point, I put an app on his phone that if he pushed that button, it was an alarm on his phone that I could hear throughout the house. And so every morning I had to get up and, Again, this sounds terrible, but sometimes I was like, okay, maybe this day I won't hear that alarm. And I prayed that he would have passed in his sleep, but I would hear that alarm every day while he could still see it to push the button on his phone. And by this time, I was not sleeping, I was not eating, but somehow I found the strength to care for him. I mean, I would have to pull him up in the bed with these devices. I'd have to pull him up.

I would have to put him to bed and he would sleep on his side, but his right side was useless. So I would have to take his arm and push it under him and then run around the bed and bear hug him and pull his arm further underneath him so he could rest comfortably. And he stayed in that position all night long until I heard that button in the morning. But I would do anything. I would find the strength somehow to do it all. But then when I got him to bed, that's when I, we heat our house. Our house was built in 1909, and it's modern now, but he still liked to use what's called

the water stove. So he would have to build a fire to heat the house. So he had to make sure that I knew how to cut the wood, split the wood, stack the wood, build the fire, learn how to use the stove. I would have to take pictures of issues on the stove because he couldn't make it out there in that space. And I'd say, well, okay, what does this mean when it's this level or whatever and he would try to explain it to me. And then after I'd work all day outside and because I had to take over the mowing at this point, I would come in and he would say March. And I'm like, okay. And then he would say weed. He was telling me that's when I had to start weeding or that's when I would have to start spraying for certain weeds or start mowing to control the wild

onions. I'm like, honey, is this what you worry about and think about all day long? And you he was just wanting to make sure I knew how to do everything to maintain the property and keep it up like he wanted it. So those were our conversations. But I did everything he wanted me to do. I learned how to do all that stuff. So now I know how to use a chainsaw. I know how to prime an oil furnace when you run out after five o'clock on a Friday and fill it up with kerosene and and bleed the lines and get your heat running back. I feel pretty confident in a lot of abilities I didn't have a couple years ago. But you just wanted to make sure you were okay.

Sorry. You just, that was. Yep, he wanted to know that I would be okay. And one of the reasons he began to sleep longer is because he said, when I'm dreaming, I'm normal. and then when I wake up, I remember I'm not. And so he didn't want to face his reality. That's heavy.

And it became so bad over Thanksgiving and Christmas of 24. When Julie would come visit, she was visiting a little bit more frequent. And we had to have some difficult discussions because we knew the end was coming. And we knew that if he could, probably at this point, he would do something. but I had no worries about that because he was physically unable to do anything to himself. And he said, I've been keeping away some pills. And I'm like, really? You are.

Not anymore. I said, and where do you have these? And he had to take Xanax at night because he had a hard time sleeping. But overtime, he had saved some. And so he collected a lot of those. And I don't even know what else was in that bottle. but he thought that would be enough and whatever was in there

I knew that wasn't going to be enough to do what he wanted to do and if he ever did try it all it would do was make him violently ill but I knew he couldn't reach where he had told me he'd hit him and at this point he couldn't open a bottle of water so I had no fear of that

but he wanted his suffering to end and I didn't blame him and Julie didn't blame him it was so hard to see him like that and we were supportive of him even as hard as it was. I had lost my husband at this point. And so I agreed with him. I said, but honey, we got to do this the right way. I can't help you. I didn't even want to take the fear of looking up anything on the computer because if he had died unexpectedly, you know, I didn't want, you know, I was scared to death. So many ways I was

scared to death. So I didn't even know what to do to help him other than call hospice. But in North Carolina, we do not have death with dignity laws. But I also knew that hospice had legal interventions that they could do. So we enrolled in hospice under palliative care, and I made no secret about his wishes. I told everybody that came here that there's going to come a point where he will no longer want to be of this earth and that point was going to be when he could not walk anymore. He said, I have no quality of life. All I do is have to help getting up. I go to the counter. I do the thing with the dogs. You put me in my chair. I have my smoothie. I might get up. I go to lunch at the counter and then go back to my chair and then have dinner. And then you have to help me

to bed. He said, this is no life. You know, this was a conversation that took two hours to have and for me to understand what he said, okay? Because the voice, I can't even imitate how the sounds came out of his throat because it was just, but you know that if it took him two hours to have that conversation, that it was a really important conversation because he was fighting. Yes. And January of 25, after the holidays, after we had those hard discussions with his daughter and that we were all on the same page, that we were going to get hospice involved. January of 25, we got under the palliative care. And I told you, made no bones about it. And I told one of the first attendings that came to the house, she was a nurse practitioner.

I said, I know we don't have death with dignity, but I know you can help legally speed the process. And she said, you mean palliative sedation. And I said, if that's what you can call it, that's what we want. And then I did research that, and I do know that it is legal in all 50 states. And I have a friend who used to work in hospice, and I asked her about it, and she said, yes, that is legal. And it falls under what's called the doctrine of double effect, meaning that they can give you all the comfort care measures that you need. But if it results in a negative outcome, such as being paralyzed or additional problems, or even, you know, death. That's okay because their intent was comfort care. And so that was what we wanted. And we were

led to believe by many of the people who came out here that, yes, we can do that. And that same attending told me we can do that? And I said, well, can we do that at home? Because I just wanted him to pass at home. That was, I thought, a simple wish for a dying man was to die in his own bed after so much suffering, just give us that dignity. And they were like, sometimes we've done it on rare occasions, but we prefer to do it at the facility because if we need additional medication, it's right there, we don't have to order it, we can get it, administer it. The day came that his foot froze so much he couldn't walk.

And we had talked about the plan, that we called it the plan, that when that happened, we would start the process. And so one of the doctors from the hospice come out and we, switched from palliative to hospice care, and one of the doctors that came out, oh, he was just the nicest man. And he could look at Steve, and Steve, even though he couldn't talk, even though he was miserable, when that doctor walked in the bedroom, he still went, went, hi, and gave him a smile.

That's who he was. But then I excused myself with the doctor again, and I put Julie on conference call, and I let them talk about meds that we could discontinue, because so much was not needed anymore. So they came up with the medication regime. He told me what to stop, what to go get, to start more comfort. One of the things Steve didn't want to do, though, was be bedbound. So I felt so guilty about putting him in the bed that last day when he couldn't walk.

But then we started morphine at home under that doctor's care, liquid morphine. I had no idea about morphine or how much was a strong amount or whatever, but I could continue that and a couple other medications, but I would have to crush those and make them as liquid as possible because one, he wasn't fully awake under the morphine and two, the swallowing problem was becoming so difficult. And so that only lasted a few days, not even a few days. That only lasted a couple of days because he was very sensitive to that morphine as far as making him sleepy. And when he did wake up a couple of times, he would say chair.

And he wanted me to put him in his chair. But I knew he was so out of it. There was no way he could help me lift him. And it was going to be totally unsafe. And that just tore me up not to do that. So we're in the bed. I'm having to help him use the restroom with the jug. And that's becoming more difficult because his muscle control, he needs to go, but he can't.

And so in the middle of the night, I called hospice. And I said, can you come out tomorrow and help me with this? And she said, honey, I'll come right now. And God bless her, this nurse game. And she catheterized him. And the relief I had just for that help. was incredible. And I knew he was much more comfortable at that point. And then it was just a couple days later. I was maybe not even 24, 36 hours later, I was giving him a dose of his medication

and he couldn't swallow it when I even put it way back in his throat. He spit that morphine and whatever else I was giving him. He spit it out all over my face. And I was like, damn it, I need them to help me more, but they, they wouldn't keep him at home. They said, we need to take him. So they did. But I thought, okay, we're going to get there and they're going to give us the help we need. So the first day, I mean, we got there. They treated him like a king. They had his room ready. They, you know, made sure I was good. They checked on him all the time. They said, okay, we're going to need to do more. and Ativan, and this dosage of morphine was so much more than the little 0.25 or whatever I was

given him at home. So I thought, okay, this is going to be quick. They're going to do what they said they were going to do. Even though I didn't want to lose him, I didn't want him to suffer anymore. I had made him a promise that he would not be bedbound. And to me, he was bedbound at this point. The second night, he opened one of his eyes. I had lived with this man for half of my life, I knew this man. He was telling me, quit being so damn nice and let's get this show on the road is what he was telling me. I know exactly without him saying a word what he was thinking. And I said, I hear you, honey. I hear you. You're right. You need more because I knew he was in pain. And I know that was part of the look like, I'm hurting. I need to.

to be out of pain. And so I went back out there and I was told I could get PRN meds in addition to the regular schedule. And they did give them to me when I needed them. But then I went out there and I said, okay, guys, I've been very nice and cooperative to this point, but I'm not going to be nice anymore. I'm going to be more demanding and I'm wanting more medicines now. Y'all told me what you could do to help me. This isn't working right now. I need more. He has rights. I know what his rights are. I know what's legal. This was a Friday. It was a different doctor. She had only seen him like less than four minutes that day. So the people who I'd seen up to this point, she was not it. Nobody there was anybody that I had talked to. And apparently

they weren't on the same page. And the nurse that was on duty that night, she didn't even understand what palliative sedation meant. Okay, she works at hospice and didn't understand what that meant. She said, you mean euthanasia? And I was like, you've told me, your people have told me it's called palliative sedation. The morphine is not working. I need something stronger to put him out of his misery. And I was, I waited for a while for them to bring me something. They didn't. I was getting pissed at this point. And keep in mind, I hadn't eaten, I hadn't slept in days. I hit my breaking point, okay? And I went out there and I said, I ask for something more. Give him something more. If you don't do what I'm asking and give him more comfort and give him what he's legally able to get. I didn't threaten anybody's life or anything like that. I did say, I will sue. I did threaten that.

As you should, honestly. And, you know, yeah, I don't think you have to. Well, that nurse that told me I wanted him in youth. she got the doctor on the phone. And the first question I asked the doctor was, have you ever dealt with a patient with PSP? And there was a very long pause. And I'm like, no, you haven't. And then she wanted to explain to me how he didn't meet criteria for palliative sedation. I said, well, obviously you need to get on the same page with the rest of your colleagues because you're the ones who told me what this term means and that you can do it. And that's why we are here. And do not tell me that he does not meet criteria. He was not in respiratory distress and he couldn't vocalize pain,

but I knew he was in pain. And you had to have one or the other to go, in her mind, you had to have one of the other to go to that next step. And she refused. But at this point, I started to feel bad because I was very loud in the hallway. Luckily, the place wasn't that packed with patience. But I still felt bad because it was, late at night and I thought, if I woke anybody that's sick up or disturbed their loved ones, I felt so bad for doing that. So I just went back to the room and I thought I channeled my husband and what he would do would be to look at the law and look at who can legally help in this situation. So one of the first people I started communicating with was our local state,

representative. This was somebody I know well. I worked at a high school when he was off session. I hired him as a substitute teacher. So I knew him pretty good. So I called him and I said, Kyle, I'm reaching out to you as a constituent. Right now, I need your help. And he was like, what's up? And I started texting him and telling him. And I said, you're on the health committee. And I need you to tell these people that palliativeization is legal. And coming from him, I thought that that would be, well, all I could think of at that point, you know, was to go that legal route, somebody with some influence or whatever. I was used to people knocking on the door like every 30 minutes to come check on Steve. Well, there was a knock, knock, knock on the door. And I was

texting Kyle on one page and then look at the law on the other page. And I'm busy doing that. and I'm kneeling at Steve's bedside, and I look up, and there's a deputy sheriff in the room. And she said, you're going to have to come out with me. I said, I will be out there in a minute, but close that door, because I still had it pitch dark in there, because I was afraid if he opened his eye again, it might be too sensitive. So I said, I'll be out there in a minute. And I went out there, and there was a second deputy, a man, a young guy, and this was a female that had come into the room.

And I said, I understand why they might have caused. you and I apologize for my behavior. I will not act that way again. This is what's going on with my husband. She said, you're going to have to leave. I said, I'm not leaving my husband. I'm not leaving my husband, even though she just heard my story about what we'd gone through. And this was another one more thing before we went to hospice. The only way we could communicate at the very end before I started that morphine, because I could not understand him. We had to hold hands because he couldn't see to point to letters on an alphabet board or words or use his phone or anything to communicate. I had to hold his hand, recite the alphabet. When I got to the right

word or the right letter, he squosed my hand. And then I could spell out a couple of words and then guess at what he was trying to communicate. That's the last form of communication we had. I explained all that. She didn't care. She said, you're going to have to leave. And then before I know it, there's a third deputy that comes behind me because I'm still saying, I'm not going.

I'm not leaving my husband. I couldn't believe those words were telling, that they were telling me this. Yeah, I acted inappropriate, but nothing to that extent. You're also with someone who's dying, and people are under a lot of, of emotional duress when someone is passing. It's shocking to me that the

solution was to not have someone come talk to you, but to call in the deputy department. Before I knew it, a third deputy came up, put me in handcuffs. And I was so confused. I didn't know I didn't know why I was in

handcuffs. I didn't. I said, well, can I go the bathroom, please? No. He handed me off to the female cop. They put me in the deputy car. No explanation. I have to wait in that car in the back seat, handcuffed. And I thought, just keep your mouth shut. Just be cooperative.

They'll let you back in. Surely they will let you back in. Just shut up. That's what I did. I had to wait like 25 minutes. But it was getting late at night, like 11 o'clock at night. I could see their reflection from the mirror or from the glass window. The three of them were behind me talking.

finally the female and the young guy got in the car the young guy drove the female was the passenger the one who originally put me in cuffs was not with us and i after we started going i said why am i in this car why am i back here handcuffed they said you were trespassing i'm like what what i mean i thought for sure it was going to be disturbing the piece because you know i knew i'd done that and i had apologized and no, they drove me. Again, I don't know where I am. I don't know how long it's going to get me to, it's going to take to get to wherever we're going. It wasn't that far of a drive, but you go through this gate with the barbed wire, and then this door opens up and you go into this garage. And the new guy is a trainee deputy. So I'm sitting back there still handcuffed for at least another 25 minutes while she trains him how to put my charges in on the computer in the car. The only way I know, where we were when we got into the building was because I served as a guardian alitum in my county for children in the foster care system. And a couple of times I had to go to our magistrates office because one of the parents was in jail. That was my only guess of where

I was. And I started asking questions and she told me to keep my mouth shut or I would get myself in more trouble. So I cooperated. I did what I was told. I stayed in there quiet. And they swore in that young cop, that trainee guy. I couldn't hear exactly what he said, but he would translate. They swore him in while you're sitting there? And so I couldn't understand exactly what he had said that the hospice home had said or whatever. So I'm just still pretty much, I'm in shock, tired, hungry at this point, in shock, worried about my husband, and I still have to use the bathroom. Okay. So trying to keep it together. The magistrate says, I'm going to let you go. I'm not going to make you pay anything or bond or bail or whatever you call it. But if you go back on that property, you will be arrested and you will be put in jail. What? And they will escort you to your car, but you will have to leave. At this point, I'm terrified to leave him, but I know I can't do anything. And it's late at night. I mean, it's getting to be 2 o'clock in the morning at this point. But before we leave,

the jail or wherever we were. I said, can I please use the bathroom? Because we were sitting right across from a bathroom this whole time, but it said employees only. And she goes and she knocks on this, this really thick glass window, which I figured and later found out I was correct, that's where they processed real prisoners. And she knocks on there and says, can she come use the bathroom? And it's a man and a woman behind this glass. And he says, well, just let her go right there. And she said, we're not supposed to let them go in there. So at this point, I'm a them. I don't even know why the hell I'm really there.

So I don't get to go to the bathroom again. I try to turn around when I'm still in handcuffs and my knee sort of buckle because I'm pretty weak at this point. And she jerked me up and put me back in that car. so we get back to the facility she goes in to get my stuff well let me even say goodbye to Steve I said I don't know where I am we'll use your GPS

I get lost on my way back to my home county I don't want to go to my house because I don't want to disturb my dogs and the person who's watching my house the first place that's right over the line when we when we get to my county is where my sister lives I get to her house. She has me on, that my calls can go through to her, however that works.

And so I said, open the door. And she was like, what? She was down to sleep. She had no idea. And the first thing I do is go to the bathroom. And then when she comes up, she says, what's going on? And I told her I'd been arrested. And I'm sure in a deep sleep and thinking, what the heck is going on?

So I tell her a little bit. But then I crawl in bed with her with my clothes on. She said, just go to sleep. get some rest. And I think I slept for three hours. And I got straight up and I drove back to that next county. But I knew I couldn't go on that property. But I parked right across the street, making sure I wasn't on their property. And then I called him. I said, I'm letting you know I am across the street. I'm calling to check on my husband. Can you tell me how he's doing? And he had developed a fever since I had been taken away and scared me to death.

because I did not want him to get pneumonia. I had worked so hard to keep him healthy regardless of everything else he was going through, but I didn't want him to die that way, you know? But I knew I couldn't go back in there. You are the first people I've told this whole story to from front to back. I've never told anybody about my arrest other than very close friends because I've held a shame about it. But I'm tired of keeping it secret.

It needs to be out because people don't deserve that behavior. And because I was so ashamed of what I had done. And I was scared to death to tell my stepdaughter. But I had to. But I couldn't. I called one of Steve's best and oldest friends. And he'd been checking up on me this whole time. And I said, Jay, you got to do me a favor.

This is what's happened. I can't tell Chuck and Julie. to call him and he did and as he's talking to them julie's packing a bag hopping in the car and i knew she was two and a half hours away and in the meantime i knew i was in legal trouble so again i'm thinking like steve what to do what to do what to do i call every attorney friend we have we have lots but they're very lucky you're lucky that you have a oh but they've got friends I'm sure they've got friends. I was even friends with our former sheriff in our county.

And I called him and I said, Mike, you won't believe this. I just got arrested and Sheriff Marshall. He knew that Steve's end was near. I had filled him in on it. And I said, I need sheriff, the current sheriff, I need his number so he can call and hopefully help me out of this mess. They don't like to step on each other's toes and all that kind of stuff and can understand that. And I said, I'm not afraid of being arrested. I'm not afraid of those

consequences. All I want to do is get in there and be with my husband. Just please. Whatever you can do. That's all I asked of anybody I called. One of the attorney's friends of ours had gone through the same thing with his dad years and years ago where all he wanted was for his dad to pass quicker than they allowed. And it was the same kind of situation. And later on, to me until later on, he had found the head of that hospice home, and he called them. But in the meantime, hospice home and sent two more deputies out to check on me while I'm in my car off of their property. These two were very sympathetic and understanding, and they went into the facility, and they

came back to me and said, they will let you go see your husband, but we have to escort you. So they let me in with them And I could only stay like five minutes But they were trying to control his fever And so they had ice packs all over him Under his arms, everything And it was awful knowing I had to leave him again One of the promises I made to Steve before

We ever went to hospice He said, don't let Julie see my body And I promised him that They had already said their goodbyes to each other So knowing that she had to come I knew I had disappointed him so much. And so that first night she was there, we kept very quietly. You can't carry that guilt.

You cannot carry that guilt. I know that I'm, I don't know Steve and I don't know Julie personally, but I am pretty certain based on the type of man you've described him to be that he does not have any anger towards you. I hope not happened. He probably was like, So proud.

That's my girl fighting for me. Yeah. That's my girl. She's prouder. I mean, I don't know if you're, I don't know if you're a religious person or not, but, you know, if there is an afterlife and he's up there right now, he's probably like, that's my girl. The police had to take her away. That's how hard she fought for me. That's what he's saying. He's not saying, oh, she fought too hard. That's what I hope for. And now I look back at it and say, I can mark that off on my bingo card. I've been handcuffed and I've been sent and put on to jail. You know, isn't that supposed to be on the bucket list to get arrested sometime in your life? You know? You've done it. That's him over your shoulder, right? Yeah.

Yeah. She's been spiling this whole time. He knows what's up. Well, Julie came. Yeah. And she showed no anger to me. I had talked to her husband while she was driving and I told him how sorry I was. And he said, yeah, you probably didn't handle that the best way.

But they understood. She knows her dad. And she would have known that same look he gave me with that one eye that he opened. She knew. So she didn't hold it against me. And in the end, in the way, it was comforting to have her there. And in a way, I know she wanted to see her dad one more time when she got there and they let me back in. But she had to be my chaperone. I could only stay if she stayed. At least I'm in. I have to be on my best behavior. Okay. I feel I have no more rights. I can't advocate for him anymore because if I ask for any, they're going to send me back out. So even though I knew he needed more meds, I was afraid to ask for anything. But after Julie gets there a couple hours later, a social worker shows up, an adult social worker shows up. And she wants to speak to both of us. So I guess they called DSS and had them come out. And she said, yeah, I need to talk to you two privately, individually. And I'm like,

okay, fine. So I go in the parking lot and I'm just pacing back and forth in the parking lot. while they're talking. I called Jay back, that friend of ours. And I'm talking to him. And I'm like, you're not going to believe this. But there is a deputy car out here. And I walk up to the deputy car and I said, are you here for me? He said, are you Miss Katie? I said, yes. And I said, oh my gosh, what am I going to do? You know, I said, please. I said, I'm so sorry. You can't do real police work, real law enforcement. I'm not going to do anything. What did they think I was going to do? Again, I didn't threaten anybody. And I didn't bring it with me, but it's not here, but I have what's called a multi-tool. Okay. It does have a knife on it, one little blade, but the rest

is screwdrivers and a scissor and a wrench and all this. But I keep it in my pocket. I actually just don't have it on me right now, but I usually just, that's one of the first things I do in the morning is put that on my pocket because you never know when you might need something to help you around here. I've lived here for 25 years now, so yeah. So I grew up in the country and one of the first things my dad gave me was a multi-tool. And he always said, I always have it with you because that's just, yeah, that's just how it is. Well, I think that's what scared that little nurse that night and led them to call. You have got to be. But Katie, they called the police because you had a knife on you.

And when she heard that, she was like, oh my God. She's like, are you kidding me? She said they live on a farm. She's always needing it to do work. What do they think I was in the office to kill him? Anyone that lives in a rural community or in a farming community or in a community that is out in nature

is going to have a multi-tool. Every single person that family is going to have a multi-tool. It's going to be in their pocket at all times. It's like something I very much remember from my child. to growing up in small town, Ohio is the multi-tool in the pocket at all times. And when I did get my handcuffs put on me, I remembered it was on me. I said, I have a knife and my cell phone in my other pocket. She said, yes, I know.

So that's how I knew they had reported that. And she said, I'm going to take both of those items, but you can have them back eventually. And when she put me back in my car that evening, she gave me those. that back. Oh, my gosh. So Julie stays there the first night, second day. We have meetings with the nurse administrator and the doctor on duty. And they're trying to tell me, you can't talk like that.

But the nurse was like, I just wish they had called me because she said she could have de-escalated that, whatever. I didn't want to interrupt. But the de-escalation failure, which is what this was a de-escalation failure. Yes. I'm going to tell you, I've heard people yell in hospitals before, and I've never seen cops pulled in. My mom was sick a lot when I was a kid, and she was often in hospice. Yelling in hospice is a very common thing, not necessarily always by the guests, but definitely by the patients. The worst thing I said was I'm going to sue you. And again, I'm 5'1. You needed 3 people. I mean, I'm 5. Nothing. I'm 5.0. I've never been 5.1. I'm 5 nothing.

okay and I'm down to like the lowest way I've been in 30 years at this point and what the heck was I going to do I don't know why did I need one two three four five why did I need six deputies assigned to me during this whole thing it was over the top it also it also feels like hospice this is a situation where people are going to be under duress so you would assume that there would be some type of, to Aaron's point, de-escalation plan or protocol for people being upset. People dying is a hard and emotional thing. Why are we expecting everybody to behave perfectly rationally? That first night, Julie was there. Steve wasn't very loud at this point, okay? The second night, things were speeding up with the process. And we had sheltered her for the most part

through her grandfather and grandmother. But she knew being in the medical field, what to expect. And when she laid down that evening, I gave her my earplugs because I didn't want her to hear anything. And then I eventually heard her snoring a little bit, lightly snoring. And I was texting her husband because he was asking how things were going. I said, I think she's finally resting because I can hear her lightly snoring. and thank goodness because she can't hear him.

She thought I was asleep, but I was just laying there next to him with my head on his bed. And she sat up at 1 o'clock in the morning, grabbed her bag that she kept packed and next to her and she walked out of the room. She didn't say a word to me. I didn't say a word to her, but I'm like, thank God she has left

because I didn't want her to witness that anymore. She didn't need to see her dad, like that. I was so grateful she left. But she had just gone to the family room because a couple hours later, I finally texted her. I said, I don't know where you are, but I'm glad you're gone. They have no right to keep you here. You go to the house. You get some rest, take a shower, get something to eat, and then you go home to your boys. I will behave. You won't be called again. And I'm not worried about myself. You just go. So then, I would leave every once in a while.

I would leave his room, go down to the family room, get a cup of coffee or whatever. I would say, honey, I'm going to leave now for a few minutes and you'll be by yourself. So I love you. And me leaving is what it takes. It's okay. You can go. I'm going to be okay. But by the time I would finish my coffee or whatever, because I never wanted to drink or eat

in front of him because he couldn't eat or drink anymore. I felt guilty doing anything like that. So that's the only time I went out of the room. And then when I would walk back down the hall before I was three doors down from him and I could hear it, he wasn't gone because that process can be very loud. The second to last night, we were there. Again, you know, I can't feel like I can advocate for him or anything. But I just sat by his bed and I counted.

the seconds between those breaths and the no breaths and it became sort of routine and sort of a meditation kind of process. Even though he had those PVC's, his heart was still so strong and they weren't giving him anything more than morphine and out of hand. And I still felt like I couldn't ask for anything more that they had taken that right away from me. So another day of all that went by. And then the last day, late at night, I gave him a bath in the bed from the tip of his toes to shampooed his head. I sat him up in the bed and combed his hair and I shaved him. And the nurse knock on the door and it was the nurse from the very first night. And I'm like, oh my God, I'm so glad you're here because she was such a sweet lady.

she wasn't afraid of me if she had been on duty that night none of that would have happened she probably had a more sense of her pocket as well but she was a I mean I'm not saying she was old or anything like that but she was definitely more experienced than the one who was on duty that night and so she's like she walked in and she's like oh my gosh she said he looks so handsome I said thank you because he did he looked quite handsome all cleaned fresh and again, I lotion him all up and I made him smell good. I said, I'm getting him ready to see his mama. He needs to be looking good when he meets his mama again. She said, but he does. And I knew that that, I knew the end was coming because finally his feet were very cold at that point, but his

hands were still warm. And she said, honey, you got to rest. And it was getting close to 5 o'clock a.m. And I said, I will. I laid out his clothes because I knew it would be the next day. And so I put out his favorite shorts to mowing and his favorite three-buttoned shirt and his comfy shoes because that's just the way he was. That was him. He didn't want to go out and he'd given up his ties and all that long ago. And so I had that laid out for him. And at five o'clock that morning, I set up the recliner next to the bed, which would have been my side of the bed at home, and I gave him a kiss. And I said, okay, honey, I hear you. I need to get some rest. I will rest. But I'll be right here. And I held his hand, and I said, I love you so much. And ever so gently, he took his thumb and stroked my hand. So I know he heard me. I know he could hear everything that happened.

I turned over because we always slept back to back. I put my earplugs in. I put the pillows over my head. And I told myself, it's just Roscoe and Steve having a snoring contest. That's all this is. That's all this is. That's how I had to put it in my brain. That's what was going on.

I fell asleep. And 45 minutes later, I woke up to a room full of people, including that sweet nurse, who I knew when I turned over she had come in that room and gave him some medicine and 45 minutes after I turned over he had passed and while I was so sad

I was so relieved and when I woke up and they were there all I could do was hold him until the funeral home came and before Steve died there's two things I haven't told you yet one was he didn't want a funeral he wanted a party he died February 26th at 545 a.m he died but he had planned his party for May 17th we didn't know when he was

going to pass but he'd planned that day I said okay little did I know at the time or he did that may is PSP awareness month and I'm like how did you do that well he planned the day he picked day. He planned the meal. He planned the menu. He picked the place, our little country store down the road, John Brown's country store, where we ate so many times he had them cater it. We had barbecue, the little potatoes, coleslaw, and of course, an assortment of cobblers and ice cream. So it took me days and days to go through all of his contacts in his computer, in his phone and just different email lists it took forever because I didn't want to leave anybody out and after 50 years of a very successful career it took a while to get all that well and he wanted

motown music so I made a kick-ass playlist and I had made little stations of his life from little to high school to early career to our marriage and our grandson and uncle Steve. I had all these stations, and that's all I wanted to focus on, because Julie had no idea what the plans were other than a party and the menu. Oh, and we had his favorite cocktails. We had Jack and Ginger and Citrus vodka and Seven Up. We had that, and about 250 people came for his party, and he was given a couple of recognitions and proclamations.

His department that he worked in, this was the first award that they, had ever done for somebody that worked for them. And they said because he had spent his life dedicated to protecting the waters of North Carolina, that we all know that rivers don't start in North Carolina, but they flow through the states and flow through North Carolina. And that's why they presented me with the American flag in his honor. And we have a cousin who, after graduating from high school, he was a Marine. And he helped who presented the flag. He did it how it's supposed to be done. But it was a party.

It was not a funeral. People, he said, he told me, don't let, don't have people stand up and talk about me. I'm like, okay, honey. That was another promise. I did break because he had so many friends that I knew that would want to speak. So I made it a time on the it, uh, itinerary for tether tales. That's what I called it. And then that dark, I said, well,

one final thing and we're going to send him off with the bang, and I had fireworks shot off for him. And that's how I ended my evening anyway, because after that, you know, at that point, this was months later, but that was real for me at that point. So that was a really beautiful experience. But in the midst of all of this, I also still had to deal with court and my trespassing charges. I had to go to court for my arrest. and they scheduled it just a few days after my arrest. And I'm like, well, what if he's still alive? You know, I'm not going to, turns out he had passed.

And I had to go to court. He died February 26. I think I had to court March 5th or something like that. I went in the same clothes that I had on that day, that whole time I was in the hospice home, because I wanted them to see what was I going to do? I was prepared. I had not written anything, but I was prepared to say whatever I was going to say. but daggone if they didn't show up so I had it had to be continued and then I had to wait another

month before the next court date and in this meantime I'm you know doing everything you're supposed to do about death you know after a death and one of the things they say on the internet is check your loved one's credit report make sure there's nothing outstanding that you have to pay so I'd always done taking care of our finances didn't, all he did was putting receipts on the steps for me to gather. And then I did the rest. So there was nothing there for me to look for or to pay attention to. But then I was like, well, let me just look up myself. I looked at myself and my arrest was on there. I hadn't even made the court. And my arrest was on my credit report, y'all. I was so mad. Because I had

worked so hard. We had near perfect credit. I was furious. Yes. Like I told you, I wasn't scared about whatever consequence they were going to give me. But when they mess with my credit, I was pissed. And so I called, I called that doctor that came out to the house. With a woman's credit. Do you not mess with this woman's credit score. I called that doctor and I'm like, you know, I'm not afraid whatever consequences they give me. But please do whatever you can and help me get this taken care of because this is ridiculous. He's gone. I'm never stepping foot back. on your property just to help a lady out. Let me talk to the team and we'll get back to you.

And I called the nurse, the lead nurse too and asked the same. They were like, well, I'll get back to you. I never heard from them again. But the second time I went to court, you have to wait in alphabetical order. It's a whole process. When they finally got to me, oh, this is another funny part. So the DA that's there was another kid that went to my high school, had graduated from law school. Before he got his first job as a lawyer, I hired him as a substitute teacher before he could get a small town. This is what's shocking to me about this whole story is like, you literally know everybody. You literally know everybody. Like, did they know what he messed with? Like, the wrong woman. And not only did I know the DA, I knew the judge. Okay. So when the judge,

they were cooked, had to take a break at like 1130 that day, she finally made eye contact with me. she said, I'm so sorry, Katie. But I later find out they don't even know why you're there until your case is called. And anyway, it was dropped, but I'm like, how I had lost so much time on grieving my husband because I was consumed with, I didn't want to think about it, but your brain keeps going back to, you know, oh, yeah, I've got this pending court date. But I was prepared for it. I'd even self-imposed community service on myself.

I adopted a highway for the foundation. Oh my God. They didn't have to punish you because you punished yourself. Your Honor, I'm guilty. I apologize. And would you please just give me the sentence of cleaning the highway because I've adopted a two-mile stretch that starts at the old fire station,

goes past my home and down the road. And I have a four-year commitment to doing that. And so that's what I've done because I clean it up anyway. Prophylactic sentencing. Charges dropped, had the party. But in the meantime, I'm struggling. And the one thing that is keeping me going is a promise that I made to Steve while he was still with us. I don't know if you can see him that good, but Steve wore these three devices around his neck in the last few months.

This is a QR code tag. I don't know if you've ever seen one of these, but this can hold all of a person's medical information. Whatever you want to upload about that person can be stored in that QR code. This is a fall detection device That I do know that works Because one time I wasn't home He had fallen getting off of the mower And he had to push it

Because he wasn't hurt But he just couldn't get up And this is the second or third Cheapo whistle that I put on here Because he couldn't holler loud enough And if he couldn't call me I could hopefully hear the whistle One of those times he fell

was one of the instruction days on how to cut the wood and we were down by the barn with Julie and Liam were here and Steve passed out and fell to the ground in a very awkward position

because I think he was just too weak going down there that day and he passed out and we could not get him up of course even the three of us we couldn't get him up so I had to call 911

and the first responder was our local fire chief of the local, it's called Saratown Fire and Rescue Department. And Chief Barney Castle was the first responder, as I just knew he would be. And when somebody has a fall or whatever, they start asking you, what medications are they on, what do you think happened, whatever? I said, Wayne, just scan this. And he's like, what are you talking about? And I made him scan it, and he couldn't believe it, that it had your income. case of emergency numbers, insurance cards, information about his disease, that he couldn't talk, everything, his medications, what they were for time of day he was being given. He's like,

I've never seen anything like that. He's like, that's amazing. And that's when I came up with the idea that we were going to do something to honor him after he, honor Steve after he died. Because I don't know why we had to go through that hell on earth with that disease, that whole horrible disease, PSP, but I wasn't going to make it from nothing. So after Wayne came out there, then I decided I'm going to set up a foundation, but I went to talk to Wayne first because I wanted him part of it, because he is the current chief. But my father-in-law was one of the founding members of that department and served as chief for many years. And Steve's title, when he worked for the Division of Water Quality, was the chief of the water quality section for the

States. And that was his title for many years. So that's when I told Steve, I said, I got to go do something. I'll be back. And when I came home, he said, well, where'd you go? And I said, well, I just went and talked to Chief Barney Castle, and I asked him if he would help me with something. And I said, I just started a nonprofit. And it's called the Chief Teta Rescue Foundation. And I said, it's named after you. And it's named after your daddy. And we didn't go through this for nothing and we're going to help people people who can't speak for themselves we're going to get them these devices to help and i told you he wasn't a very touchy-feeling guy but and it might be because his dopamine was being reduced and i didn't give him enough cobbler before i told him but

he cried it's the cobbler and i could tell he was proud that he knew that i would fulfill that promise. And then I had set that up before he died. And on June 1st, it was a Sunday afternoon. I found this company online called Medic Alert Foundation. And I went through their website and I found their leadership team on their website. But there was no direct email for their president, CEO, CFO and C-O. So I stalked them. I figured. I knew you were going to say that before you said it. I couldn't find them on Facebook, but I found them all on LinkedIn. I love LinkedIn. LinkedIn is where the good stocking is these days.

I messaged them individually, and then I sent a message to their general mailbox. And I had already started what I call the Teter Talk Tour, which included going first to our local municipalities to tell them about our journey and about the foundation. And I was asking for support because this not only, will help a patient in their loved one during a crisis, it will make the job of first responders much more efficient. They can be patient focused and not paperwork focused. And if they need to roll with that patient, they can scan this code, go to the hospital, and just hand over that information to the hospital. And so I was determined I was going to find a partner company. I was getting ready to go to the city of King Council meeting that night.

At 6 o'clock, I was supposed to speak there at open comments about the foundation. And at 420, the president's CEO of Medic Alert Foundation called me, and I couldn't believe it. Without hesitation, when I told her about the two and one, well, I wanted three in one, but she said, we are going to make that whistle with the QR code on it. we're going to make it, and I'm going to give them to you for free. She's having them manufactured in her factory, and they're going to add it to her product line. And I thank God every day for Karen Giselle at Medical Alert Foundation for calling me and agreeing to help me fulfill this promise I made to Steve.

So thank you, medical detectives, for having me on this podcast and letting me share my story. Well, Katie, I just, I want to say that we have had many guests on our show who have gone on to start things and make foundations and come up with tools and resources. And you're just an incredible example of channeling grief for good. All of that time you spent helping Steve get onto the mower and making sure, you know, that he was fed properly and bathed properly. and bathed properly, right? All of that energy has to go somewhere. And, you know, this is part of your grieving process. And to do something that's going to benefit others is such a wonderful way to channel all

of that energy. And I know Steve would be so proud of you for sharing your story, for sharing some really vulnerable and embarrassing and shameful, even though none of us see it that way, but we just really thank you for, again, even letting us into what those last moments were like, which are so intimate. And so I really thank you on behalf of all of our listeners. I know they'll never forget this talk. Thank you so much, Dr. Nance. Agreed. Thank you, Ava, for listening. Oh, I really enjoyed hearing your story, Katie. And I would say, what an amazing partner you have in Medical Alert Foundation.

For those of you guys who are not as familiar with them, they are one of the leading organizations in helping people get medical data to be accessible during emergency settings. They're partners with a lot of organizations such as the Alzheimer's Association, Epilepsy Foundation, Walgreens, just a wonderful nonprofit. So what an amazing first partner you have for your initiative here. Maybe you'll inspire someone in their own community to, start something similar. So there's one thing of the doing, but telling your story might inspire

someone else as well. So thank you so much for sure. Thank you. And chief tether.org is our website. And you can see pictures of my handsome husband on there. Thanks, Katie. Thank you so much, Katie. Thank you. Thank you very much. That was a wild ride. My heart goes out to Katie for what she is in a position where she is trying to do her best for her loved one. And her best in her mind is to make sure this process is as smooth and as painless as possible. And that's where she was coming from. This whole time, she's coming from a place of I want to honor my husband the best way that I know how. I think the challenge with the whole situation is that we do not have a standardized approach, at least in the U.S. And I think it's not even

a universally accepted view of what control a person has over when they're ready to die. And I think what was specifically hard about, you know, Katie and Steve's story is that Steve had communicated that he wanted to go as quickly as possible. And so whether or not Katie had the power to do it, all she wanted to do was fulfill his wishes, right? So it's kind of like in this situation, the wishes in some ways were at odds with what the state was allowing her to do. Yeah.

And for me, really, the biggest failure in this story was the failure of de-escalation, right? Because Katie is in a time where this is probably the most stressful situation where her husband is dying. One unique part, though, about the story is that Steve physically his body was still technically strong, right? his heart was still working, his lungs were still working. In his case, his brain was what failed. It was, that's what the PSP was. So it's very difficult when your brain and your body are not in sync. Most of the times, you've got a really sick body, you've got a really sick brain, it all goes together. And so when this process wasn't going as quickly or as painlessly as Katie was hoping, that's when those emotions really went into overdrive.

And when you are dealing with the medical system, listen, we as the health care workers, we also have to protect ourselves. And so we are trying to do the best for the patients, do the best within the confines of the system. And that's when the tensions are sometimes, right, at odds. That's when emotions flare up. As health care providers, we are taught strategies for de-escalation. I cannot think of a single time. I once had a patient try and mow me down in their wheelchair because they claimed that I wrote a prescription for their dilauded in their spouse's name and not their name.

What they were really doing was trying to get an extra script. They tried to literally run me over in the hallway. And I didn't call the police. right? I mean, I try. I mean, I kind of scoot it out of the way. I'm trying it out of the way. But I still understand, right, that these are not necessarily everyone's finest moments and that this is a time where we have to say, okay, what is going on? Understand, I don't think these healthcare workers because it was a shift change, right? They didn't understand the why behind what she was asking for and why it mattered so much to her. I would also say that a person who's at that level,

of exhaustion is not using their rational brain. And I think it's unfair to be like, oh, this is a totally rational person. She was very honest about the fact that she hadn't slept in days. And so I think that, especially in a hospice care situation, that is probably a very common thing. So it was surprising to me that there was not a clear plan of approach for when something like this escalates, because I would imagine that it's not that uncommon. having seen multiple people pass away in hospice, I have seen people lose their ish multiple times and never once was the authorities called. Oftentimes the person was kind of left to their own devices to calm down and then a

conversation was had with some type of mediator. So it was surprising to hear that the like immediate reaction was let's call the police. Yeah. And I think to go back to we're always taught and we should be leading with compassion in all of our communication, in our decision making. And so unfortunately in this case, this was just this was like a worst case scenario, right, as to what can happen when you do or say things that can be perceived as threats. Because as we have seen, I mean, they had episodes of this in the pit. They, this is stories all the time that health care workers are physically attacked, right?

This isn't coming from an unfounded place of concern. So I think it's just such an amazing opportunity that Katie even was brave enough to share this story. Because I think if she looks back on it, she probably believed that she did act in ways that she, today would probably not act the same. But I think that the reason why she acted, that will never change her love for Steve. And it only makes me think that there's, again, another opportunity to do some education about how to have these conversations. Like, I wish there was like an owner's manual to like when someone has a shift change, right? So you know like, okay, this is what I need to update the nurse on every time there's a shift change because that can be an entirely new person.

perspective. I'd also say just to lob on what you just said is that we're all just humans trying to do our best, right? And some days our best is going to be fantastic and the highest level of care. And sometimes our best is not going to be that. And that is universal, whether you're a health care worker or you're a teacher or you're just a person in a corporate desk job, right? So I'm wary to get too angry at anyone in this situation because, again, hospice is very strong. stressful. But I think at the end of the day, there should have been a plan in place for when things escalate. And if there was the people who are working at that time, we're not educated in that plan. And if anything, it serves as really just an incredibly powerful story and

lesson for anyone who has yet to be in this position. And listen, if you have parents who are in their 70s, 80s, you are most likely going to be in this position soon. So again, I really, really thank Katie for being so vulnerable and open and sharing the story. It's obviously very painful to her, but one that I think is going to prepare so many people for the possibilities of what really bad can happen so that it never happens to them. And I'd also say this is a great way to advocate for, if you know somebody who is going through this, to potentially be their voice. So be the person that has the conversation with the nurse for them because they probably won't be in a great place to be that person themselves.

Thank you, everyone, for sticking with us and listening to this two-parter, and we can't wait to see you next week. Yes, thank you so much for listening, guys. Oh, and if you loved this episode, remember to give us a rating, a comment, share it with your friends. And if you have a story that you think would be amazing on our podcast, please do not hesitate to shoot us an email. You can send that to, oh gosh, Aaron, I forgot it again. Stories at the Medical Detectivespodcast.com. Thanks, everybody. Thanks.