Memory Care with Teresa Youngstrom
Family Frustrations When Dementia Moves In
(upbeat music) - Hey, Care Partners. Teresa Youngstrom here with a better approach to memory care. But today it's our podcast, Memory Care with Teresa Youngstrom. Thanks for being here and thanks for coming back. So many of you are liking and sharing and subscribing. You know, it's awesome. We're getting, we're reaching out so much further and I appreciate that. You know, I'm a seasoned registered nurse who figured out she didn't know much about dementia though and got kicked out of the blankity blank house by her own mother. Yeah, truth be told, true confessions here. And then I realized, you know what? There's so much more to this than meets the eye. So anyway, that's what my mom actually was the reason I started a business called a better approach to memory care. So today on a podcast, we are gonna be talking about family frustrations when dementia moves in, you know, 'cause we're not really prepared for this to happen. It just kind of starts to happen. It kind of settles in too, kind of unsuspicious for a while. And you know, we turn our eye, we turn our head. We don't wanna see it, you know, we're in denial that she's making the mistakes. That's normal aging, you know, or he's making them as those mistakes. But then once the mistakes get big enough, and we gotta realize, boy, we better get some training. 'Cause let me just tell you, people that try and wing this on their own, it's not good. And it usually doesn't end well. And so I hope that you'll share some information with them. Even some of my tips on the website, tereseyoungstrom.com could be helpful to them. And you know what? There are videos there too. We really are trying hard to get the information out. We'll go to the Facebook page, a better approach to memory care. I have so many shorty videos there. I mean, one minute, two minute, that have great tips to help you on this. So let's get right into this, family frustrations. It's, it can be very frustrating. And you know, something Teepa Snow taught me with PAC, positive approach to care, Teepa, one of my mentors. You know what she taught me is that one in five families can stay together after going through this with a loved one. After joining a loved one on the journey. Why though? I mean, what's the big deal? Oh, it's a big deal. Once you've been through this, you'll see. Because even in my family, you know, when you have siblings and different people who wanna make the decisions on you, gotta communicate, you gotta come together for the common good. And because otherwise it can divide your family. So let's get started. So we're noticing changes. So I don't know what your first symptoms were that your loved one had challenges in their thinking or remembering or processing, or maybe it was getting lost in the car. But for my mom, you know what? She and my dad had traveled in their motorhome for years. It was wonderful. And I think it allowed her to be declining, but she was in a very enclosed safe environment, which is my dad. He was very familiar and she had her dog. And it wasn't like they were doing different hotels or staying in different Airbnb's. It was the same space. And it worked out well into her need and cooperate. Then we needed knee replacement. And then it became much more apparent that we had a problem. And so she refused for a while, her knee did well, but then she started getting more weak and needed therapy and she wouldn't do therapy. So we're stuck then because you have to do therapy after knee replacement or that joint is just not gonna work. They're not little computers in there that are gonna just work automatically. We've got to train up the muscle and the ligaments around that in order for the joint to work. So that was a game changer when she refused to do physical therapy. So we had to get busy. And I know I've reviewed some of these common symptoms with you, but it's good for you to know and just know that memory loss, would you say it's short term or long term is the biggest problem? Well, for most people it's right. It's the short term that gets us in trouble. They may be getting lost. They may have anxiety, depression, hallucinating. Maybe you see some of those symptoms, but anxiety and depression, they really fall under the category of a mental health disorder. And technically they are determined to be treatable. And so, but when you get a mixed picture like that and you have someone who's struggling with memory and struggling with maybe some type of a dementia and they've got anxiety and depression, it just can be very, very difficult. So they're going to need a lot of grace and a lot of time to get through this. And who knows it may be different medicines, but medicines we just have to be so careful to start them one at a time. You might see she's unable to perform simple tasks like maybe she always could fix that dessert just off the top of her head and no longer does that dessert come to mind or maybe she just doesn't have any inclination to cook and she always did. And that would be different, wouldn't it? There can be confusion as the evening hours approach and we call that sundowning in my research, it's a tired brain, but that might be a symptom you see is that by either late afternoon or when it starts to get dark out or it might be early evening, they may show more symptoms of forgetfulness, more word finding, more irritability even, okay? 'Cause in their mind, it's very frustrating when I can't think correctly. How about declining social skills, social interactions? It's interesting that as long as we don't make them feel bad about a situation or embarrass them, they may keep going to church, they may enjoy singing with the choir, they may enjoy doing activities, especially if there's spouses on board or a family member that keeps them comfortable and thinking this is perfectly normal how they're acting. It's okay to notify the people around them that she's got some challenges, but she's doing great, just don't ask too many questions. And don't ask her if she remembers your name, okay? So you can prep the people around you to accommodate what he or she might be having trouble with and as long as we can keep them in the game and socially active, it's awesome, but I have to pause because I'm meeting more and more people who have a diagnosis, they know they've got dementia and they're still able to make decisions, they're still able to engage online with other people, with support groups, they can still engage in activities and they can still be a part of their care decision making. And so don't jump in too fast. If someone still has capacity, I always wanna caution you that I've seen families come in, swoop in and wanna put mom in a place and take away all of her driving, take away her going to her women's club or to her church meeting or whatever. And I want you to hit pause on that. Every individual is going to be different as to how this disease affects them and they have different situations, different relationships, everything. And so I just want you to be careful that if you've met one person with dementia, you've only met one person and we can cater the care to come alongside and let them live their best life inside this, okay? It's not a three month cancer over and done. They could still have 10, 15, 20, 30 years of life left. And so let's make the best of that and not rob them of some things that they could still do and enjoy, like beauty and animals and nature and music and so many wonderful things. Maybe they can't do their checkbook. I say so what? Get someone to do that and let them enjoy life. So you might see them being defensive, never wrong, always the victim, paranoid and suspicion, paranoia. That might be a symptom for you, wandering, trouble sleeping. So you get the picture. They're all going to be a little bit different. There may be a lack of initiative for hygiene too. We do see that a lot, but I teach a lot of great techniques on how to come alongside with that. So I just want to quickly review some of the symptoms and your loved one's symptoms will be a little bit different. Okay? Is it dementia or is it something else? And it's a really, really great question. Don't always assume the worst guys because do you know if your thyroid is having trouble? If your thyroid stops working, your symptoms could look like those of a person with dementia. So let's get it checked out. How about if your hearing is gone? You know, I had a pastor one time come to me and he said, "Ah, I think I got what you teach about." And I said, "Really?" And I said, "Well, the first thing I always have people do is go to their medical provider, you know, their doctor, their PCP and do a regular physical and then get their hearing, get their vision checked and just get the routine things checked." And we might find out, "Well, you've just your hearing is to the point where you're not hearing the conversation. Listen guys, if the hearing isn't great, there's no way to get the information to the short term. So then it could then get into the long term after a good night's sleep. So be reasonable that it could just be hearing loss. It wouldn't that be. That's so much easier to deal with getting some hearing aids. People with dementia who then get hearing aids, well, it's risky because if they have no short term memory, they may not remember they wear hearing aids and they pull these things out kind of irritating, isn't that? I don't use these things. And they look for a good place to put that, which could be right into the garbage can. And there's a several thousand dollars in the trash. So if you're going to get those hearing aids, like I said, get evaluated early, check the hearing. If it's a problem, get the hearing aids early so we can get into a good routine of putting them in and taking them out. Routine routine routine is so important when we're caring for someone. So if it's not the hearing, maybe get the vision checked, but thyroid, it could be a low B vitamin, especially someone who has had a lot of history of drinking alcohol. And so the B vitamin deficiency can give us some foggy brain. You know, they're saying diabetes and poor nutrition can give us foggy brain. Not everything we see is dementia. And there are some things that are treatable. And so I just want to hit the pause that maybe it's dementia, but let's rule out all the other stuff first, okay? And you know, really, bottom line, no matter what it is, we're going to do comfort care and symptom management. That's what we do. That's what we do. We love and care for people, for richer, for poorer sickness and then health. You know, and as kids, come back and help care for your parents. I'm all in. And I just want to be able to help you to be able to care for them and give you the tips and the experience and review the mistakes that I've made, right? So that you can move forward with this. Okay, let's go back to the next slide. All right, so how are you doing, dealing with having this new diagnosis and new prognosis? So now we know there's something. And a couple of things, mom may or may not agree that this is what she has. She may not be able to see this disease or she may be realizing that I am forgetful. Some of them will get very sad and very solemn and that we're going to have to make sure that you be that light and that smile coming in, not with a bunch of questions, but with a lot of greeting them, introduce yourself and a lot of compliments, you know, to lift them up. But it can be hard dealing with this. Some people don't deal with it. Some spouses think that it's not true and they're going to just be the enabler. And they don't want their spouse. Guys, they're so close to it. They really don't want their loved one to have this. And so they may turn away from it and not really address it for a while. Can be dangerous here. They might be leaving that person alone too much. They could get into trouble, maybe, you know, cook something or have put something on the stove and walk away or they could leave the house thinking there on a mission to go do something. So there's a balance. There's a balance to this, but I can just tell you, nobody should wing it alone. It will take you down. And Teepa told me probably 65% of the individuals, whether it's a child of a parent or a spouse who try and wing this alone, they'll get sick and die themselves before the person with the dementia. That's a big stat. And I just want you to swallow hard on that and believe me that it's important to bring in help. Even if you have to, they may not agree to help. So I never asked mom if she wanted help because she would have said, no, I don't need that, but we told her we were bringing help in for dad 'cause he was older and she was all in for that. So if that works for you, there's an easy one. Other times we've said that, you know, now Medicare says you have to have, once you're over the age of whatever, if they're 76, it's over the age of 75, you have to have a caregiver three days a week to come in and just make sure that you're safe and everything's gone well and you've got food and water and whatever. We have told some stories like that just to get them to agree. Remember, I never want you to be the bad guy. I always want you to maintain the relationship with that person struggling with memory failure, all right? And so it's, I don't want you to play good cop bad cop with one of the siblings, you know, let one of you be the good cop and one of you be the bad cop. I wouldn't recommend that. I've watched it happen, I've watched it fail and I've watched some well-meaning daughters, you know, like me, miss fix it, who just wants to fix that, fix that, fix that, don't you do that, you can't do that, stop doing that, how many times I have to tell you, why don't you eat your food, why don't you take a shower? All that stuff that is wrong and just keeps damaging the relationship with that loved one until eventually they're like, no, no, they don't, they don't want to be around you anymore because they don't remember all the things you've done, they don't even remember every conversation, but they'll remember how you make them feel. And I have had a woman who would never let her daughter in her presence again, she just put up her hands and would say, no, when her daughter would come in. And that's so sad, I don't want that to happen to you. So let's be careful, let's be careful and not demand things of them when they don't have capacity, but let's engage them and maybe great stories back in time, you know, of historic things that were pleasant, experienced mom, I remember when blah, blah, blah, blah, or dad, the best thing you ever did for me was blah, blah, blah. And you're sharing these great stories, a much better way to deal with this, okay? It is so frustrating because the disease is always changing and it may be changing with adding physical decline because like if you think of Alzheimer's, it starts off with, you know, it's a brain decline and it's me not being able to think right. Remember, the short term is damage for sure, but it's a slow progressive and we can adjust as it goes, but you know, it eventually can become physical and maybe I forget how to swallow, maybe I can't walk any longer, maybe I find myself bedbound and maybe my joints start to pull in on themselves with, you know, become more contracted and that's all part of the disease I hate to tell you and I might have trouble swallowing too. I might not understand the chew, swallow, breathe, routine of things, isn't that crazy that you would mess that up, but it's a real thing and they may have trouble swallowing and they're choking, but the hard part is that as soon as we figure out how to care for them right here, then they move down a little bit and we got to come up with some new ideas and figure out what in their situation, what are the techniques now that we need to work on in order to keep them safe in wherever they're living at home or in their community. Let's see. So we always want you to be part of the solution, right? Not part of the problem. And so I want you to think about this. If they have dementia, who has to change the way they do things and it's got to be us, it has to be us. They can't change the way they're doing things. Don't finger wag that and correct and carry on because it doesn't work. You know, I know I was with some caregivers one time and they were bargaining with the residents. You do this and then I'll give you a cookie. You do this and then I'll, you do this and I just said, you guys, not great technique. Let's really not bargain with this person to kind of put you in a boss submissive, maybe kind of a manipulative situation. Not the best thing we can do. I would say we can come up with some better techniques than that. Maybe if you ask them to help you do something and get them into the bathroom that way, help you find something where in the world is that hairbrush, you've got a good hairbrush and I can't seem to find it. I really need your help. You know what, you are the best finder that I've ever come across and who knows maybe that would engage her enough to come in and help you and really the goal, ultimate goal was to get her to brush her teeth but you got to get her into the bathroom first. But every time you said it's, you have to brush her teeth. No, nope, nope, nope. And so we got to be creative as this changes and just know that they're still doing the best they can. Guys, they didn't ask to have brain failure, right? Yet when someone in the family develops this, kind of the whole family's involved and we can need to be part of the solution or part of the problem and I want you to think about that and arm yourself with good technique and good ways to say things, resolve things, to be sorry, to be humble and get creative on how we can get them to do things that need to be done without being condescending or manipulative. It really can be done. I'm always talking about being the great detective instead of the judge. So if she acts out or says something inappropriate, I don't want the finger wag to come out and telling them, don't you talk like that, I'm here to take care of you, I'm giving my time, you could at least be nice, okay, wrong answer. 'Cause listen, if she could find the right word with her language and cognition, she would. But obviously she's having trouble with that but something is causing her to go to the emergency words and use whatever's right there and just frequently they are colorful. That's putting it nicely. It can be cuss words, it can be racial slurs, sexual innuendo, it can be a variety of things but just I want you to notice and become a great detective instead of finger wag and get that magnifying glass out and see if we can figure out what's really going on. Is there pain, fear, anxiety? What's that, you're saying? Yeah, when they're using those words that many people label a behavior, I hate the word behavior because it's such a negative term and it just seems to then result in medication. And I don't think that that is accurate at all and it's so unfair to the person because if I've got an ingrown toenail and I can't tell you but you just put these shoes on that are too tight and it's killing my toenail and all I can say is blankety blank, I can just cuss about it, can you have the wherewithal? Are you gonna just go say, Teresa's having a behavior, we need to give her something 'cause what is the ultimate goal? Is the ultimate goal to shut me up? I've seen that, I'm sad to tell you. I've seen that, it's sad, it's very sad that we would treat another individual like that. So if you're all right with me, join me on drop kickin', the behavior word out in the left field because I don't wanna hear that about people. What do you mean it's a behavior? They're either unhappy, they're sad, they're in pain, they're having fear, they're anxious about something, there's something in their head that's playin' around and messin' 'em up and it's causing 'em a lot of challenges. So yeah, there's all kinds of things goin' on but to have that condescending label, I just can't go there. So I just want you to be a good detective and not a judge. I don't want you to give them something that's gonna make it more difficult for them to talk or walk or think more clearly. And so ask yourself that, will this, I don't really know what's causing them to be upset but will this anti-psychotic drug, is that gonna make them think more clearly so they can communicate with me better? Is it gonna make them walk more safely? Is that gonna make them be able to not, to think, oh, I shouldn't get out of my bed when no one's here or are they gonna be completely out of their mind now with no senses but they gotta pee and they know they gotta be and they're gonna get out and fall out of their bed. So, and you know what happens when we break the hip? And then when the pneumonia sets in. So that's just something I think we need to be on guard to be more preventable with. I'm hoping that we'll learn to be able to get more caregivers. That's the biggest problem right now, probably is lack of caregivers. But if you're at home and you need additional caregivers, let's see what we can do to provide that. This person is gonna need more and more care as they decline. All right, have I harped on that enough? Okay, moving on, moving on. Okay, if one person has dementia, already told you this whole family is dealing with dementia. So let's educate ourselves along with some of the brain failures. So tips to avoid frustration. Don't share your problem and worries with these people. Don't come in with your loved one. I don't wanna say these people with your loved one. Don't share the bad news of what's happened at work or the big wreck you saw or something like that. You know, it's amazing that that issue that you come in with and all you're doing is venting. I mean, life's hard and we go through a lot of stuff every day and it's easy to wanna come home and share your frustrations. But I'm telling you the person who has brain failure, they're not the best candidate for you to vent on. And so I just want you to hit the pause button when you get there, take a deep breath before you're even in their presence. And follow Mayo Clinic that says your tone and body language is so important. I want you to take a deep breath. Let those problems go. This isn't the right situation. All right, let's lead them down to pleasant memory, memory lane, not something unpleasant. True story, I was going to visit a lady once and the traffic was terrible. And there were fire trucks and live squads and police cars everywhere. It was before I had good sense and I came in to visit her and I was late. She was in a nursing home, she definitely had dementia. And I was like, oh my goodness, what a day. I mean, the traffic was so bad, there were police everywhere and I was giving her the whole dissertation. And do you know 10 minutes later when her personal caregiver came in to her room, she very solemnly explained to her how bad everything was and that the police are everywhere. And the ambulance, people are hurt. And she even embellished the story and it became a part of her. What in the world did I just do to this poor lady? Okay, so wrong again. Learn from me, learn from my mistakes. Yeah, don't do that. That is not what we should be doing. These people that are having trouble with brain failure. So say you're sorry, it's often as needed and I want you in there, leading them down joyful stories down memory lane. And here's the deal, if they have trouble with their short-term memory, you find the stories they love, you can repeat those stories and still generate great smiles from them and lead them back to a happy place. But also understand that you don't know where they're going to be when you come in. I don't care if they've been tested in there two or four or six or an eight. There really aren't eights, but you know what I'm saying. I really don't care what level they've been deemed to be at. When you come in, they could be in a variety of situations if there's pain, if they didn't sleep last night, if they're uncomfortable, if they have a UTI, they could be anywhere. And so you need to just come in with your full assessment skills, you know, ready to go as to where they are. They may be back in time looking for their parents. They may be tracking with you, which is always wonderful or they could have a good mad going on. And you better say, wow, I had no idea. I'm so glad you told me. And your tone and body language better be all in, okay, to save that moment and engage in them in the proper way. Otherwise, it can be so tough. So just know that it can be different. Let's see, heading back to the last slide. So I want you to take that breath. I want you to observe how they're doing. Let's avoid the yes, no questions. Why? Because it seems like over time, most people struggling with dementia learn to say no. And then that's what we're gonna get. No, no, no, no. Do you wanna take a shower? No. Maybe we change that to an either or. Were you thinking a shower or just washing up today? Let them feel in control, okay? I want you to accept and agree what they're saying. Just accept and agree. It's not rocket science, but you can accept and agree. Even if they're wrong, it's okay to say, wow, glad you told me that. I had no idea even if they're wrong. Okay, guys, just keep in mind the person living with dementia, they didn't ask for it, okay? And they need us more than ever in this time. And the journey will be hard, but oh, so worth it. And I'm hoping I can come alongside and help you provide some techniques, provide some support, provide some knowledge to you and your family members to come alongside and really engage with them on the journey. Get the help that you need, bring and help as you need it, maybe before you need it, okay? And just to give you the confidence to stay in the game, I'm Teresa Youngstrom with a better approach to memory care and you've got this. (upbeat music) (upbeat music) (upbeat music) (upbeat music) (upbeat music) (ethereal music) (dramatic music)