Memory Care with Teresa Youngstrom
Ethical Dilemmas with Dementia Part 2
[ Music ] >> Hey, care partners. Welcome back to Memory Care with Teresa Youngstrom. So excited to have you here today. And so many of you are subscribing and liking and sharing these podcasts. I really appreciate that. It's vital we get this information out to so many people in the world that need this information. So today we're going to -- we're on episode nine. And we're going to continue with ethical dilemmas with dementia. And, you know, some people said, well, you know, what's the big deal? And I'm like, oh, there's so many issues that come up. And so last week, we covered probably 10 different situations. We didn't answer all the questions, but it was pointing out different situations where, wow, yeah, oh boy, yes, that and this and that. And we covered a bunch of stories, too, where I've run into ethical dilemmas with families, with clients, with residents, with people. And today we're going to just take it a step further into, I mean, what could go wrong when you're caring for someone who loses their ability to make good decisions? So we're going to bring up the slide and get started because I think you learn better with different perspective. So we're going to move on, you know, how about in a situation where you're caring for someone, they're having trouble making good choices? I mean, guys, it's completely different. If your loved one has full capacity, you know, they might have a little short-term challenge or maybe they can't remember how to make the apple pie anymore. You know what, I'm not sure we're at an ethical dilemma there. That person still has capacity even if, you know, we talked about advanced directives, power of attorneys, you know, financial, medical, and having a living will. All excellent things. We all should have one of those notarized and on file, okay? But you realize that only, that only is utilized when this person is, you know, unconscious, you know, they have lost capacity and with dementia, they've got to be pretty compromised to consider them, you know, there's no ability to make their choices. Now, if they have the anisognosia that I teach about frequently and they don't see their disease and they're paranoid, suspicious, not reasonable at all, no logic at all, they're defensive, never wrong, always the victim, you know someone like that, maybe I did. That's when I learned, that's what I learned was, was ailing my sweet mother and she couldn't help it, but I had to figure out, I care for her inside of her brain challenges. So when I'm talking about making choices against their desire, this is for someone who has definitely lost capacity to make reasonable choices. This is not to gang up on your mom and put her in a place. Ah, that scares me right away. These are people we're caring for and each situation will be different and very individual. So when we talk about making choices against their desires, it might be something like bringing in private duty because I've told you in the past, when you care for someone, when you care for another human being, you're either going to eventually bring in help or they're going to have to go somewhere else to stay because it can be so hard on the primary caregiver. I think Teepa Snow told me that 65% of those primary caregivers who are trying to wing it on their own, they'll die before the person with brain failure. That's crazy, but that's reality and you know some of us will give it all and we'll lose it all. We've talked before about what's dementia that filters out for them being hard on the person closest to them. They'll be kinder to a stranger, kinder to the doctor, the caregiver, maybe the police officer, someone in uniform. It depends on the situation, so not always, but we have, we get to a point where we're going to need help and I can think of bringing in help when they don't see that they need help when they have anisognosia. My mother would have never agreed to help. It would have been over my dead body. I don't need any help, but we were able just to say, well mama, dad's getting older and he's going to need some help. But she said, oh boy he is, my dad is still independent. He just turned 91, he's amazing, right? And at that time he was even more vibrant and independent, but she accepted that, that's us using that strategy. She accepted that right away as to why we were had to bring help in. But I remind you frequently that you are caring for someone else. It's all about the relationship and how is that going? And you have to be on their team constantly. And so when it comes to bringing in help, there are times when we need to use a story, use a story of, well the doctor has said that you have to have private duty at least three times a week. I know mama, I'm on your team, I'm not seeing it, but you know what? If Dr. George thinks it's important, you know, he's a great man and he's cared for you forever. And so I think this is a great idea and we'll be on this together. Who knows, maybe we'll get those dishes done and you know, you can make it more fun, but stay on their team if they are someone who doesn't have the ability to have any logic. Now if they do have capacity and they can help make decisions, then include them in the decision making. My gosh, it's absolutely respectful that we do that. Is it possible they'll forget what we talked about? Absolutely. If the short term is damaged, can we write stuff down and leave it for them that on this date, we talked about this, if they still have capacity to read? You know, it's a chronic debilitating disease. And at this stage, where your loved one is, we figure out how to make it work and so did we. But then guess what? Then they go whoop and something changes and now they're in a different place. Honestly, that could be a few hours later. It could be, you know, what they're like after dinnertime, you know, with the sundowning after four o'clock. So you've got to be on your toes just to join them on the journey wherever they are. Whatever type of disease is yelling them, always being aware that we can't see inside their head and whatever everything that's going on. But we can come alongside and join them on the journey. So a current ethical issue is making choices against their desires. And that could be bringing in private duty. That could be it's time to place them in a place. It's killing you, keeping them at home and it's time to put them into place. And so that takes a lot of planning. Sometimes they're understanding and willing and you can even include them on looking at the places. Sometimes that's not going to work at all. And there have been times where we come up with a story that they have found termites, mold, whatever it might be in the house, in the apartment. And so you know what, mama, we're going to have to get out for about a month. So we've got a couple of apartments to look at. And of course, this is your memory care choice that you have given so much thought and consideration to. You know, changing location with these people is really tough. And frequently, our loved ones with brain failure will spiral down and do worse for a while. Some of them don't recover from the doing worse. So it's so important that we make really good decisions when it comes to relocating somebody. But, you know, in a perfect world, I would bring in private duty into the house for a couple of months, let them get used to a couple of caregivers that they have developed a relationship and a trust with. And then when it comes time to move into that apartment, we do frequently let them feel like it's temporary because we got to just kill these bugs or these, this mold or whatever it might be. And then we move them over into this new place, but we take the private duty with them. We even have the private duty say 24/7 for a while. And then in the morning, when they don't know where they are and they don't even remember moving there, private duty is there, someone they know and love that is familiar and can say, Barb, I know we don't even know where the dining room is. Let's go on an adventure and arm and arm. You two go find what's going on in that place. And we begin the journey of helping her become a little more familiar with this new home that you and I both know is going to be the ultimate home. At least that's the goal. We don't move them unless we think it's going to be the ultimate home. Okay. I'm just want to impress upon you. Now, sometimes stuff happens. The primary caregiver has a fall is in an accident, gets sick and we quickly need to transfer someone. I still, if you could provide private duty or you could set up a schedule with family members that are familiar to care for her and come alongside and help her orient to the new place. And you can decide whether the situation is such that you need to have a story that this is temporary or, you know, just until so and so recovers. Or if, if you've made it, they have a capacity to understand this is going to be our new home for now. So I leave that up to you because I don't know your specific situation when we consult with people, we can come up with really specific game plans. But we've had it work very well where the person moves, thinks it's temporary and eventually they quit asking. They quit asking about, I want to go home and I want to go home, just so you know, can mean a lot of different things. When my language and cognition is damaged and the left side of my brain for most people, that's where language and cognition, that's where it lies. So we do have some emergency words on the right side and maybe what's most familiar is, I want to go home, but that can mean a lot of different things when we're compromised. So be a good detective and not a judge. And if they're doing the wiggle dance like they've got to go to the bathroom. Well, maybe that's what they're trying to tell you. Oh, and you can repeat it back with, oh, you need to go home or something else. That's a tip of snow technique and repeating their words back sometimes they'll correct themselves or sometimes they'll correct you. All right, you never know, we got to go with the flow, but either way, I want you just to be aware that change is really hard. Making choices against their desire takes a lot of thought and something that came up this week was just the fact of getting power of attorney when they don't have capacity. Maybe they've already got a diagnosis and it's documented and so we can no longer get them to sign the documents. And so can we get to non blood relatives and a notary to sign that this is what's in their best interest and give power of attorney to someone that I have done that once. I've only done that once. I think it's very rare. But you don't need to jump into guardianship right away hit the pause button. That's very expensive. And you got to go through probate. I would say pause. And I know that at some locations. I've been in some nursing homes, some long term care communities that will try and talk you into giving someone else. guardianship and I would just say again pause. Why, why are we giving that up. Why are we giving that choice to someone else. I think you probably know what your loved one needs. And if you aren't available. If you live out of town, maybe what we do is get a local care manager in Ohio. We have geriatric care managers all over town. It's almost like that daughter that's not in town. Pretty cool, but she can go visit your loved one. She can hire private duty if you need it. She can bring hospice in when it's available. She can take her to doctor's appointments, pick up pharmacy. I mean, and usually they're paid hourly. So this is a real option. If you're not here to do make all these decisions. Why not think about a geriatric care manager. The fact of these ethical decisions. So making choices against their desires really tough. And probably the first one you see is when you need to bring in private duty. You beyond their team. Okay, you beyond their team. That's the most important part. Okay. And then we just really went ahead and entered into challenge with change of environment. Just really need to impress upon you changing their locations really tough. When these people don't have short term memory. All right. And it's like taking them to a hotel or on vacation. And I'm telling you dad is tripping over beds and plants because his bathroom was always right here and now we're in the strange room and the bathrooms over here. That can be a problem. At some point you'll realize that taking him on vacation isn't the best idea and bringing people to him, probably in smaller quantities is the better thing. We don't want to stress these people out and something else to let you know They'll come a time where you need to if you're going to have a birthday party for them or celebration. Let's do it during their best hours, not what's convenient for the family. I want to do it during their best hours. And their best hours is between one and three. Then that's when we're going to celebrate. We'll keep it short. We'll keep it sweet. And at the least bit Notice of irritation parties over and it's been wonderful. Don't wait till tables are turned in and cakes are being sent over, you know, tipped over or anything like that. But just respect that the change of environment is really hard on these folks. Okay, I think we got it. What about adding anti-psychotics to control these people? I'm sad to say that I see that a lot. I see it a lot in communities. I see it in the hospital. I've seen it at home a lot when the doctor doesn't have any other answers for you. So I had a woman call once that I was working with And she was caring for her mom. I could tell she was getting tired. I had recommended private duty. And she she notified me one day that oh my gosh, oh my gosh, oh my gosh, like what's going on. And she said, this is the weirdest thing. And I said, okay, what was she doing. And she said, she takes the squares of toilet paper and she lies them down around the bathroom. Well, she's on the commote. She kind of puts this pattern of tissues on the floor, the toilet paper squares. And I said, okay. And then what? And, you know, because she was doing bizarre things and she was, she was hallucinating a little bit. She was talking to people that weren't there. And I said, okay, was it a positive? Was it a negative? I mean, because it's so important, guys, if it's not hurting anybody, I'm not going to get ruffled about it. You know, I can go back in that bathroom later and sweep up those squares and toss them. Not a big deal. Not everything is risky or dangerous that we need to intervene. Some things are just different. And it's okay. She might have had in her mind a very good reason why she was putting the toilet paper down around the perimeter of the bathroom, square by square. I don't know. It was an activity, for sure. But I know that when the family went to the doctor about it, the doctor said, well, we can give her, you know, this medicine, which was an antipsychotic. And I just have to hit the pause button and say, look, I'm not the doctor. I can't give you that medical advice. But I can tell you that it's okay to ask the doctor, will this make her think more clearly? Will this make her walk more safely? Or are we causing a risky or dangerous situation? And, you know, it's a great question. And so my best advice was if she's not doing anything, I mean, because really she was getting worse. Okay, brain was getting worse. Absolutely. But she still wasn't doing anything risky or dangerous. And I didn't see a reason why she wasn't threatening to kill somebody or, you know, picking up scissors to stab somebody or anything like that. I mean, I did have a woman who came to live with her daughter. The change of location was terribly, terribly difficult. She was definitely living back in time. And she thought that her daughter's husband was her husband. She was a little possessive of him and didn't really like the affection that her daughter was giving to him. And that was tough. But one night she did show up at their bedroom door with the baseball bat and had intention to get that woman out of her husband's bed. And so you can see that's a different situation. And that we need to figure out how to intervene, come alongside. I mean, should she still be living with them? Should she have 24/7 care? Or did she need a medication? I think it's a possibility. I don't think we always have to go for an anti-psychotic though. So I just want to hit the pause button on that. Unfortunately, it seems to be where we drop kick problems with folks that have memory challenges. And I'm talking to more pharmacists that are deep prescribing and set up prescribing. And so they're rare, but I'm looking for them and they're out there. And I really think this is going to be positive. And so just use that question. Is this medicine going to make him or her think more clearly? Walk more safely? Those are good questions because do you know what I typically see sadly is that folks get over medicated. Either they don't eat for 12 to 14 hours. They don't get up to use the bathroom. They get a urinary tract infection. Or they do feel like they have to get up to go to the bathroom and they get up and fall. And then you know how this goes. They break their hip. Broken hip frequently leads to pneumonia because then they're immobilized in bed. And that's just not a recipe for success. And so I really am trying to position these folks to win. Okay, difficulty with communication. This gets really tough when you don't really understand what they're trying to say to you. Okay, but frequently the emergency words. Like I said, language and cognition damage. Go to the emergency words. Those words can sometimes be ugly, dirty words. Yep. Is grandpa cussin now like you never used to or is grandma cussin like she never used to. It might be cussing. It might be racial slurs. It might be sexual innuendo. I mean, it's a variety, but they typically have their favorites. My mother certainly did. And I can just tell you that just because they're communicating now in a way that isn't isn't desirable by you. I still want you to know that They're still communicating. It's still communication, even though you don't like it, or you don't understand it. And I frequently have people who don't understand what's going on here, finger wagging these people down, telling them to be nice. I'm here to take care of you anyway. And I'm like, no, no, no. She's communicating. She's trying to tell you something. When I worked in the emergency room for a long time. People with dementia's would show up with raptured appendix, you know, with their gallbladder soul inflamed. They probably had been suffering for months. Or they've got a broken hip. They've been trying to walk on because no one saw the fall and that person was able to pull themselves back up to their chair. And now they are cussin and carrying on and cussin and carrying on. They're in excruciating pain excruciating pain. We can't even imagine. And sadly, what I saw working in the hospitals a long time. I did a dozen years of agency work. So I worked every unit practically in the hospitals and got thrown into all kinds of things. Had the Had the pleasure and honor of caring for a variety, a huge variety of different people and learned so much. And I can just tell you that frequently folks that would have this type of behavior, not my favorite word, because they're communicating, but it would be deemed a behavior and then they'd want to throw an antipsychotic at it. Well, if you've got a broken hip. Do you think we should treat the pain? I want to say yes. So I'd rather we treat the pain and not just your behavior. All right. So I know I'm strong on this, but it's important. Guys, I've I have the experience to tell you that we've done it wrong a long time and it's time to do it right. It's time to listen. It's time to understand their communication. And you know what, TPA says, when you have come in to greet someone, first, we're definitely going to assess whether they know where they are right now. Are they back in time? Do they even recognize us. I always introduce myself. I always approach from the front because of their loss of peripheral vision. But I'm assessing to know whether they're even in time, even in current time where they're back in time. But the other thing to assess is how many words are they using with you. If you're saying, Hey, good morning. It's great day. How, you know, you look so great today, whatever and ramblin on because normally they can communicate like that. But in this moment. Either their words don't make sense or they're just using two or three words, then put on the breaks and I want you to use two or three words. See if you can match their number of words. So that they can understand you more clearly. Okay, it might be a real good technique. I think we overwhelm these folks. Sometimes with our words and that's really hard. So definitely, definitely slow down the words when they're communicating and frequently, you know, some folks to have developed what they call words salad, not the nicest word, but you're using all kinds of words in their mind. They're, they're using appropriate words and they're talking and talking and talking. Usually happy to And I just go with the flow with their tone. So if it's above, above, above, above, I'm like, wow, sounds amazing. I'm so glad you told me. But if it's like dah, dah, dah, dah, dah, dah. And this and it's like, Oh boy, you know what that doesn't sound good at all. We should let someone know I'm so glad you told me. Okay, so get on their team either way with your tone and your body language and go with their flow. It's not the time to point out. I don't understand what you're saying. I don't understand. No, it's not the time to point out their deficit. All right, we love them along. We just love them along. We don't need to point out their deficit. How about blaming everything on behaviors. I brought it up a few minutes ago. I just get aggravated that we just say everything's up behavior because for me when they're using the emergency words the inappropriate words. In my experience, that is related to pain, fear, anxiety. What was that pain, fear, anxiety. There's something going on. There's something going on. You know, there was a time when my mom was just cussing and a caregiver's call and said, Hey, we don't know. She's just, you know, using her emergency words, but we can't, we can't tell what's going on. Should we give her something? And unfortunately, that is a common denominator. Should we give her something? And I said, well, become a detective, not a judge. We don't really know what to give her, do we? Because we don't really know what's going on. She's communicating in with, with emphasis and she's upset and she's kind of mad. And so can you do a head to toe and see if maybe they've hurt themselves somewhere? Well, they were able to get her in bed and get her tucked in and she did calm down and I'll tell you that when I came in the morning. She had a skin tear on her left arm underneath her pajamas and the pajamas now was resting in that skin. Yeah, had become a part of that. That wasn't good. But in her condition, she wasn't even able to point to her arm or say the words arm or you ripped my blankety blank arm off. She could just use the blankety blank words and she couldn't say any more. So another, another great example on why we have to be a good detective and not a judge when it comes to these individuals. Let's bring up slide 16. So how about using local EMS to remove your difficult resident? This happens. This happens and you know what the family, they haven't been taught. They haven't been trained. They're trying to wing it. They don't understand why mom does what she does, but they're aggravated at her. They're tired of her cussing at them. They're in there trying to, you know, bend over backwards of care for her. And all she does is is holler at them. She's defensive. Never wrong. Always the victim. They don't know anything about Anastasia and why she's responding or a better technique to help her. And so all they want to do is get her out of there and get her some get her to a nursing home so that they don't have to, you know, because they don't know how to care for her. And so I've had locally, I'm in good relationship with the local EMS and fire. I've done training there and they'll notify me when there's someone in the area family that needs help that they're at their what's in and they keep calling 911 to have her removed from the home. When she's doing okay in her home. It's the kids. She's fighting with and can we come alongside and teach them how to communicate with her work with her and at the same time, get them some help. Get them some help. So I've seen it. Oh, the other thing is that sometimes the patient knows how to call the person living with memory loss. They know how to call fire and EMS. And so sometimes 911 is getting called routinely by I had a woman who called 911 because kids took the car. Kids stole my car and I want that dealt with right now. I want them in jail. She was serious. He was very serious. And so it's good for the local fire, EMS police to know about your loved one. Maybe even have a picture of your loved one. Should she, you know, should he or she become missing, you know, turn up missing, but then it's also great that they don't send the police every time that we don't tie up emergency services for someone who's just mad at the moment and can then maybe someone like me come in and train them up in some better ways to care for mom. So she's not feeling like she has to run and dial 911. All right, guys. So let's promote less fear. Dementia is unpredictable. I think I've made and press that upon you. It's always changing the way we behave. And so it's so important. And when you come in eyes wide open, have your great assessment skills. And and don't judge right away and see if you can decide why they're doing it. So I've already kind of talked about Behaviors and what you know about behaviors, but it definitely is a form of communication. All right. It can be linked to a past experience belief or feeling though that creates a perception of the situation. So whether they are thinking back to a tragic time in their life and they're kind of reliving it sometimes our veterans are reliving a little PTSD creeps up in In their dementia and that can be really hard and really scary and we got to prepare for that. And how do we affirm him validate And then be able to deescalate that we have to train and come up with some trial and error and figure out how to get on his team. There was one gentleman thought that he was going he he was actually walking down the street and the police came up and they knew who he was and He had a bag. He had put on his old army uniform and he was reporting for duty in his mind. He's reporting for duty And so the officer had to wear with all the say, oh, you know what? I can give you a ride I can give you a ride and he just you know didn't didn't correct him or anything But he said you know what he said we got we got time for lunch if I can give you a ride and he ended up redirecting that He took him to lunch. He was able to notify the family. He had him. He had dad And so there were just different ways we can go about this But don't be surprised if someone who's been a veteran and was in you know In some real scary situations in their life if they may at a later time come out in what looks like a behavior And can we still come alongside and serve these people walk them down off that ledge? You know by affirming them and validating their position how hard that was And and still be able to serve them and help them without Making them feel you know stupid or loss of dignity But our perception and response of the situation it may trigger response reaction from the resident with dementia I just can't say it enough when it comes to Behaviors that how we respond remember what Mayo Clinic said. It's all about your body language and your tone Words don't count for as much but your tone does and if you come in with good for dad you do this again I'm just so furious at you. You know what? You're only going to escalate the problem and So to somehow figure out how to take a breath and soften that I know you're tired and so obviously we need to bring more help in or it's time for dad to go somewhere where they have special training to care for this Okay, and so I just want I want to offer you please get help get help if you're at a point where you just can't Contain this anymore. You're gonna have to you're gonna have to get more help So but definitely our perception and our response will will change that when the response or reaction From the residents unfavorable. That's what we're calling behaviors. I think we've gone over it enough. Okay As a dementia specialist, I learned to pause right look at the situation from the patient's perspective work on that That's our homework. I want you to work on this from the patient's perspective, okay, we could go on all day guys with triggers things that cause pain for anxiety Different types of noise over stimulation. There are so many things. Are they just bored tired? Hungry and we're not aware of what's really going on I just really really really want you to be a detective and not a judge when we're caring for people who have brain failure You know UTI is a common problem and they can become frequent once you start having them So we really got to be careful that and maybe hygiene needs to be addressed If you're seeing a lot of UTI is more fluid and and better hygiene But all these things can make us look like We have dementia or can accentuate it and I just don't want that for you. All right I'm gonna have to wrap up my gosh. Where did 30 minutes go so quick? I just love spending time with you and love to be able to give you more help and more explanations and More stories on things that I've done wrong or I've watched ways. We've helped other people who weren't able to Didn't have the experience to come alongside join that person on the journey from the get-go. So ethical diplomas are going to come up Whether you have to not be completely honest or redirect Whether you are gonna have to make decisions without them being aware because now they've lost capacity and they don't even see the disease Whether you need to take the time to include them and everything because it's early and they have so much capacity You know, I'm meeting more and more people that have a diagnosis and they know it and they want to learn and they want to talk And you know what they can teach us? They can teach us how it feels to have dementia and then how we can be part of the solution and not part of the problem Okay, I'm Teresa Youngstrom. My company is a better approach to memory care We've been talking about crazy ethical dilemmas with dementia I hope that you will like share subscribe and just keep in mind that there is hope and help with dementia Okay, you got this You you you (upbeat music)