Memory Care with Teresa Youngstrom
Ethical Dilemmas with Dementia Part 1
[ Music ] >> Hey, care partners. Welcome back to Memory Care with Teresa Youngstrom. Excited to see you all back again, and I hope you're enjoying these podcasts. This is episode eight. We're getting there. It's amazing. And we have a big, big, important topic today. How about ethical dilemmas with dementia? You know, if you think about it, these challenges come up all the time. And the reason they come up is because sometimes we're trying to do life with someone who can't always tell us what they want or what they're looking for and what decision they would have made. So we'll talk a little bit about the challenges that come up, and we'll also talk about some preventative ways that you can plan ahead so that you're not faced with these crazy challenges when they come up. So let's go on and get started. This is going to be a part one guys, because there's just so much to talk about when we're talking about dilemmas. So let's identify just a few of those dilemmas. Let's go next slide. All right, so, I mean, what could go wrong? What could go wrong, right? When there's a lack of cognition to make a decision or follow direction, and when I started writing down these problem areas, it was like, oh my goodness, just in the short time, you know, looking at interactions I've had in situations with folks, it's just amazing. So we talk about safety at home, and this comes up all the time. So as moms still stay at home, as dads still stay at home, you know, and sometimes I had a family member just this week say, wouldn't it be great if they would just downsize? And all these things, you need to pause. And the reason you have to pause is because A, every situation's different. B, is there risk or danger? Or are you just looking to make your life more convenient in caring for this person? So safety at home, are they going out at inappropriate times? Do they no longer have awareness of day/night? Are those kind of challenges happening? Are they putting something on the stove, turning it on, leaving it on, burning up pots and pans? I mean, I took care of a lady once who lived in an apartment building. And the first time I came in to see her, assess her, and the company I was with was bringing in private duty. And I noticed that she had a plastic container taped, duct taped, to the ceiling near the door. It might just happen to later ask about, you know, the bowl tape to the ceiling and you're not going to believe what was under the bowl. Yeah, the smoke detector. The smoke detector was under the bowl because the landlord kept complaining that the smoke alarms go off and then the fire department shows up and they get charged, and so she had a way to fix that. You know, you just tape something over that stupid thing that keeps calling the fire department. And so the logic is a little messed up there, but these are things that we run into. So leaving stuff on, burning stuff on the stove can be a problem. You know, if there are pets involved, that goes along with safety in the home. Maybe they forget to feed the pet, let the pet out, just care for the pet. Sometimes we accumulate lots of pets when, you know, especially for lonely. And if it's just one person, you might find they've taken in every stray cat in the county and out of, you know, out of love for sure. How about enacting the power of attorney? You know, that is a big deal because really we could talk about safety in the home for two days, but enacting the power of attorney. We'll talk more about that later, but that's those are things you guys need to take care of right away, you know, to have a health care and a financial power of attorney and living well. I mean, to do that early on, when a person definitely still has capacity to inform you on their wishes, it's vital. When I worked in the emergency room as a registered nurse, I can tell you it happened a lot that we'd have someone come in in critical condition and the family was at odds over what, how we should proceed. For example, whether to do CPR, whether to intubate the patient, whether they wanted to be on a ventilator or not. And I tell you what, that's not the time. That's not the time to be discussing it. We need to discuss it years in advance. So any of you out there that don't have that done, let's do it. Get it done because you know what? You are relieving the stress and grief off of the person who's going to be left. Trying to make those decisions as to what they think you may have wanted. But yet you didn't talk about it with them, so they don't know. And it's really unfair and a lot of guilt can ensue. You don't want to end up in the emergency room and not have your power of attorney. Because really when the power of attorney kicks in is when you are in capacitated. I think some people think that if they go ahead and sign that, then that person has rights to their finances. But talk to your elder law attorneys. That's not the case. That's not it's when you are incapacitated. We get into the gray area with the dementia part. And does this person still have ability to make their decisions? But they're struggling with maybe cooking or remembering to shower. Or is this person now at a place where someone should be making decisions? Those are gray areas, those are ethical dilemmas. That's what we're talking about. How about whether or not to use a therapeutic fib? There were plenty of times when I use therapeutic fib with my mom. You know, I've told you about her asking me if her parents were there yet. And I would leave and check the driveway and come back and knowing full well. They had been gone for about 25 years, but that's not the time to talk about that. And in that moment, if she feels like they're alive and she's back in time. Well, I've got to go with the flow and keep the peace. And I just said, hey, mama, I checked the driveway. They're not there, but I got someone out there watching for them. Oh, good, good, good. She said, and that just brought down her worry. And then I was able to redirect her to a happy place. So therapeutic fib, good, bad. I mean, I've had some family members say, by golly, I haven't lied. And I'm not going to start lying to them now. And they frequently come back two years later, just absolutely distraught and having destroyed a relationship with someone who they couldn't use their logic with. And so, you know, all of these things, they're individual for each person. And sometimes when we're dealing with someone who's brain failure, just, you know, we're doing individual care, personalized care. And but the thing about dementia is you can be somewhere in the morning and somewhere else in the evening and figuring that all out and and having the capacity to roll with that. That can be really tough for you. How about consent for treatment? I got a story later to tell you about a woman who went to the hospital and couldn't give consent. They called me about that. Yeah. So if you have dementia, can you still consent for treatment? If you need a procedure done, if you need, you know, your gallbladder, you know, removed or something like that, that's tough. And would she want that? I recently worked with a family who the dad had fallen and broken his hip. He was in a memory care community and they had to decide whether to fix the hip or not. And whether that additional anesthesia would be good or bad for him. And it was the fracture in a way that he could still get around and we could transfer him and use a wheelchair. Maybe he could eventually be up with a walker. And so another, another dilemma, another ethical dilemma. How do we figure this out? Dementia and jail, you're probably thinking, why is that even on there? Well, I had a client go to jail and sadly was front of temporal challenges, front of temporal dementia is where I may lose my safety awareness. I may lose my food, my filter, what is coming flying out my mouth. I can alienate a lot of people and tick a lot of people off because my filter's out. And so everything I think comes flying out my mouth kind or otherwise. And, you know, sadly, I heard a statistic once that more people with front of temporal are in a court of law with a challenge that they've gotten their mouth has gotten them into trouble over something before they see a neurologist. That's a terrible statistic. But sadly, it happens. And sometimes people are ending up getting divorced because one person has become very difficult over the past 15 months, not realizing that the dementia wasn't suing. So dementia in jail, though, during COVID, I had a gentleman who was, had no short-term memory and he was in a community, he was in a nursing home and they were supposed to stay in their rooms, right? That was the rule. Well, no short-term memory in his mind. It was time for lunch and show he was coming out and the girl came up behind him and grabbing from behind. She was frustrated, short-staffed, tired, overworked, COVID, all that adds up, right? I'm not blaming her, but she grabbed him from behind. And in his mind, what did he think? Yeah, assault, assault. What are you doing? If you're just going to lunch and someone comes around and grabs you with aggression to pull you back. Yeah, so he was much bigger than her and he brought her over. Dropped her and they called the police and he sat in jail for about four days before I could get him out, before they would understand. Because you know, the challenging thing is you people that have dementia don't always look like they have dementia. Sad, but yeah, so dementia in jail, using sedation, using sedation. So we don't like your behavior. We don't like the way you're responding. And so is it okay just to medicate that down? And said to trying to figure out, you know me, I want to be a detective. I want to figure out what's going on here, not the judge. I don't want the hammer to fall and we just give you a anti-psychotic. I want to figure out what's really going on there. You know, do you have an ingrown toenail? Is your hip hurting? You know, do you have an appendicitis? You've got problems. Are you sick? I don't just want to sedate you. Maybe I could redirect you. Maybe I could engage you in something. Maybe better yet, maybe you could help me go set the table. Maybe you just need something to do. You're bored and you're getting in trouble. Going into people's rooms, cause and trouble. You know, I watched the lady once go into another woman's room and she saw a purse that she liked and she picked up, put it on her shoulder and walked out. And I said, nice purse. And she said, yeah, isn't it nice? And, you know, she wasn't malicious. She wasn't. Since he herself is stealing something, she just didn't know better. She found something she liked and she took it. But that can get him in a lot of trouble. And then, you know, do people want to give them something to sedate them. So they're more manageable. It's a big challenge and it happens because so many of our communities are short staffed and what do you do? How about I'm explaining the diagnosis? So this is a tough one because early on in the disease, most people have an awareness that there's something to miss. And so do we engage them in that? I guess we're going to have to pay attention to how they respond to that. And are they in denial or do they want to be a part of their care? Because, you know, the more people that I meet that have a diagnosis and are aware of it, the wealth of knowledge that they can give us over what they're feeling and what's going on, especially when the wheels fall off and, you know, things get broken or, you know, something happens, but they can frequently say, this is what happened. This is what I felt. This is what I heard. This is what I thought was happening. And the over stem can cause them to pick up chairs and drop them and smash them or other things or maybe use language that's not appropriate. So explain the diagnosis and including people with the diagnosis in their care is a very personal individual basis. Sometimes it's most appropriate to have them there. Other times it's just not. And so I have to, you know, be able to assess that and really get a feel for our players in the room and to make sure that the person who came for me for help is really the one, you know, make sure everybody is straight with me. There are times that you'll come into a situation, a couple and older couple, and both of them have challenges in their memory, all right, or their cognition. So discerning all that can be tough. How about hiding meds and food? Is that appropriate? Tough question. I had a lady, you know, she just needed a little bit at night and a little bit in the morning and she could then live with her daughter and everybody was happily ever after, but the woman refused to take a pill. She was never going to take a pill, drop dead, she's not going to take a pill. And when they had tried to put her into memory care and she got sent out to a behavior unit because she wouldn't take the medicine and she was absolutely indignant that they wanted her to take medicine, then, you know, the behavior place couldn't really do much with her because she wouldn't take the pills that they were offering her and she got sent back out. But the daughter was able just to crush to a fine powder and she had ice cream for breakfast and she had ice cream for dinner and it worked. Is there ever a time when you see people that are over sedating people? Absolutely. And that becomes an ethical dilemma. And so each situation is different guys, but all these things you might be faced with. How about end of life decisions? You know, we hope that there have been conversations about that because now if you look up most M-O-L-S-T and post P-O-L-S-T, some new documents that are coming out with hospice companies and doulas and end of life doulas, you know, they're you're having a lot more options as to how, you know, you want, what are your wants or, you know, maybe you don't want to ventilator ever, maybe you don't want CPR ever and you can, you can write that stuff down. Maybe you're okay with a feeding tube, maybe not, but those are certainly those end of life decisions when to bring in hospice, when to not. And just so you know, people with dementia can tend to get hospice, get Medicare to cover hospice earlier on than other individuals, you know, as long as they have lost some capacity, some of their activities of daily living, like maybe if they can no longer do their hygiene, feed themselves and maybe they've got a rash or something from incontinence, they you can have them evaluated and qualify. I would certainly do that early on and have them in the wings to be able to help you. I'd say the value that that did for my mom at our house was had a nurse coming to the house once a week, setting up the medicine. It relieved me of some of the nursing chores, which was really nice. I could be the daughter a little bit more and not always be the nurse, setting up the meds, ordering the meds, picking up the meds, ordering supplies because a lot of supplies are provided with hospice care and it brought in an aid three days a week also for an hour. And that was just more eyes and ears on my mom and dad and brought more supplies. And so, you know, every situation is different, but those are just a couple of the ethical dilemmas we might see with dementia. And there are lots and lots more. So, when we're caring for someone with dementia, hopefully decisions are considered and decided by individuals of good character who just learn moral questions with good faith, right? And seek to make the best judgment. You really want to have someone who cares about the person. So, when you're designating people to make decisions for you later in life, you know, usually it's a family member, but doesn't have to be just so you know that it could be a brother-in-law, sister-in-law. It could be a neighbor. It could be your best friend from from college. It all depends on everybody's situation, their relationship. You know, are you married? Are you not married? Things like that. And so, I just wanted to be your choice and not someone else's choice, but I do want to trust that the person who is making these decisions is of, you know, they do understand what you want. Because we do have, you know, there are guardians out there. You can have a guardian if there's no one to take care of you or if you're not going to allow any of your family members to take care of you. Although sometimes a family member can get guardianship. You got to go to probate court though and it's involved and it can be expensive. So, hopefully you guys will make decisions early on. Have a plan. Have a plan because you guys, none of us get out of here. None of us get out of here alive. None of us do. I was talking to a lady the other day. New diagnosis. But you know what? She's young. She's amazing. And I just let her know, you know what? It's great that you can plan. You have capacity. You can plan. You and your husband, your son, they were all there. You can make good choices together because this isn't pancreatic cancer. It's not going to take you in three months. You know, it's not a crazy car accident that takes a loved one away from us in an instant. I mean, none of us are guaranteed tomorrow. So, you know, I told her this can go 5, 10, 15, 20, you know, vascular dementia, we're seeing go 30 years. And so, as long as you know, the comorbidities, the other parts of your body are still healthy. So, to be able to have that conversation and it kind of just brought it back, brought her put her feet back on the ground. She could take a deep breath now and breathe and realize, okay, it's not over just because yesterday that doctor gave me a diagnosis. I said, sister, we're all going to get something. You know what? Yours doesn't mean you're going to go in, you know, three months or anything. And we're going to love you through this. And the best way you can do is plan and let your kids and your husband know how you want this to go and we'll move from there. Let's see, advanced directives just to go over that a little bit more detail for you. So, advanced directives include your financial and your health care power of attorney. Those can be the same person. Those can be two different people. Those documents need to be signed and witnessed and notarized. So, you have to do it with a notary. And there are different companies that do that for free. I know social worker, they'll do it for free. There's elder law attorneys. Either way, that is something you need to get done. And our family attorney did that, did that for us and then she keeps a copy and then we have copies. And a living will is all so great because that's where you can check off what you want and what you don't want. And then, like I said, once we get near hospice and things like that, there's some new forms coming out the most and the polls, depending on what state you're in, that maybe you can utilize. But, you know, the importance of these advanced directives, right, is, oh, I want to tell you about a story. Yeah, this is my reminder. So, I knew a woman that I had cared for in the past and she didn't have family that was involved in her care. She was older, she had dementia, she was now in a community, I'd found her down in her trailer, it was tough. But, she'd found herself in the hospital now and guess whose name was still on the chart? That's right, yours truly. So, they called me and I'm like, oh, okay, yeah, I remember this lady and they said that looked like she was having some heart issues, cardiologists had seen her, they were gonna do a cardiac cat, put some stents in. Maybe they were considering bypass and blah, blah, blah. And I said, you know she has a DNR, right? And they went, what? And I said, and you know she has dementia, right? And because you know with dementia, you know, vascular especially, we can be on in the moment in karyotic conversation. We're not gonna remember anything. We told you probably, but in the moment, we can communicate. And so, the doctor on the phone with me said, you know, I looked at her this morning, she looked pretty good. I like she's okay. I said, okay. I said, well, let me just let you know that 10 years ago when I cared for her, I remembered this lady and I said, they had tried to do a calf then and everything was impassable. And she had inoperable coronary artery disease inoperable. And I said, now she got dementia on top of that. And I said, and I know then that she is a DNR. And he said, well, I don't have any paperwork here. And he was mad, you know, this cardiac surgeon was that he didn't have any of those details. But he didn't believe me at all about the dementia, because he thought she looked pretty good. So later that afternoon, he did circle back and to go talk with her. And of course, she didn't know who he was or what he was talking about. And then he called me and he goes, huh, you were right about that dementia thing. And I said, well, I'm not, I don't want to be right about anything. But I said, I certainly don't want this woman to go through a surgery that we have already determined that she didn't need, you know, if we can, if we can just make her comfortable and get her back home. And so anyway, they didn't, the paperwork had not gone with her, her history and physical, and her DNR had not gone with her from the nursing home to the hospital. And this cardiologist was working off what he saw and what he had and his information. So let's make sure everybody has the paperwork that they need. Make sure your doctor has copies of this information. A DNR is, for example, in Ohio, if the ambulance comes to the house and you can't produce the paperwork for the DNR, they have to proceed and implement, you know, the algorithms to save that person's life. So just, I mean, I would keep, keep it on the refrigerator, keep it close in hand. And I know this sounds kind of gory out on the refrigerator, but you just don't know when you're going to need it. And so just make sure your doctor has a copy and everyone, everyone who might need it as a copy. I know some daughters may keep that copy of it in their purse just because whenever they're out with mom, you know, they might need it. So probably more than you wanted to know about advanced directives, but it can be involved. So just get her done. You know what, go ahead and get that paperwork done and have it done. And then it's done. But just know that you can circle back. And, you know, if it's been five, 10, 15 years since you've done that, it may be a time to go back and look at it again and make sure the people you designated are a still alive are still friends of yours and have your best interest, right? So, and you can update those at any time just so you know. There was also one other thing I thought of is that we had an individual who they wanted to switch the power of attorney and the person was unable to sign, you know, the person had mid-stage and stage dimensions. So he was not able to give permission. And so there was a rule that if you bring in two non blood relatives, these are so these are not relatives, but two people that can vouch for you and sign in the presence of the notary that you are the person who should have power of attorney, we were able to do that and avoid probate. So you might look into that and see if that applies to wherever you are listening to this from. Okay, just a little thing to talk about the importance of advanced directives. And I found this this LIVE. How do you live this engagement? It's a neat campaign about end-of-life services and how to really go about talking about it with some people because some people don't want to talk about ethical things or the fact that, you know, they may be dying eventually and so this was just, if you use the acronym LIVE, so the L is to learn about options for end-of-life services and care. And it's very superficial, we're not trying to get them to sign anything, we're just trying to have conversation. Over dinner, I don't know, but at some point in time it'd be good to at least have this conversation, okay? The I in LIV, let's implement. Let's implement plans to ensure wishes are honored, all right? So let's go ahead and get some things signed because we do want to do what's in their best interest. The V is voice decisions to family and friends and health care providers tell people what you want. If you don't want any part of any of that, if you don't even want the ambulance to be called, you know what? Let's at least have all this stuff written down so that everybody involved is legally covered for that. You know, I know at some point my mother did not want the ambulance called, she wanted comfort care and symptom management and she wanted just, you know, for hospice to be involved, she liked those ladies, although I got to tell you with her dementia, we didn't tell her it was, we didn't tell her it was hospice. We just told her it was the name of the company and they were and that Medicare paid for it and she was ecstatic that that was going to be free for her and that we could get a nurse to come and caregivers to come and they were even going to take care of her briefs. And so she was very excited about that. I will tell you that I omitted telling her that it was a hospice company. Okay, the E in LIVE is then to engage in personal or community efforts to improve end-of-life care. So like I said, go ahead and reach out to a hospice company, go ahead and get extra care in there. If she needs private duty care, whatever it's going to be. So we're going to learn about the options, we're going to implement the plan, we're going to voice decisions, right? Make sure your needs are known and if they change, you know, make sure that you speak up and don't be afraid to talk about these things, they're important. They are important, important. So having these documents taken care of, right, will save your family just so much hardship, you guys, possible trauma, regret. Like I said, working in the emergency room and watching a loved one struggle with what to do and whether to do the CPR and put mom on that ventilator or not, so, so hard. And they're very emotional decisions. And so like I said, get these documents done. So I think we are going to pause here. Boy, that went fast. Goodness gracious. Fast, incredibly fast, 30 minutes with you all. So there's the first part of, you know, ethical dilemmas with dementia and we're going to talk about more things next week. I'm so excited that you're here. My name is Teresa Youngstrom. I'm a dementia specialist. My company is a better approach to memory care and we do consultations, whether phone, zoom, we can do them anywhere now across the states because of zoom. And so phone, zoom are around the kitchen table. We're doing lots and lots of staff training and even have a staff training video available for you to purchase or for you to tell your community or your private duty company that they could purchase that and use that training with their caregivers because it's, if you bring me in to do training, you're going to need me again in 30 days when your staff turns over. So we do and just as a speaker, I love to do speaking events too. And this is our podcast, Memory Care with Teresa. It's the latest thing that we're doing just to try and serve more and more people who are struggling with the issue of dementia. It's not going away. We need to just come alongside and join these folks on the journey and let them be involved as much as they can, let them be as active as much as they can and then just to love them to the best of our ability. That's what we do. Bring them joy in the moment. That's what we do. So again, Teresa Youngstrom, I hope that you'll like and share this and subscribe, right? And that would be wonderful for me. All right, you know you've got this. [Music] [BLANK_AUDIO]