Virginia is joined by Dr. Natali Edmonds, a board certified Geropsychologist and founder of Dementia Careblazers, an online resource for dementia caregivers. Dr. Edmonds talks about 4 mistakes caregivers make when dealing with their loved ones, and the steps we can take to avoid these behaviors.
You can learn more about Dr. Edmonds and Dementia Careblazers at www.careblazers.com
Virginia is joined by Dr. Natali Edmonds, a board certified Geropsychologist and founder of Dementia Careblazers, an online resource for dementia caregivers. Dr. Edmonds talks about 4 mistakes caregivers make when dealing with their loved ones, and the steps we can take to avoid these behaviors.
You can learn more about Dr. Edmonds and Dementia Careblazers at www.careblazers.com
Intro 00:06
From the University of California, Irvine, this is UCI minds, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Virginia 00:22
Hello, and welcome to spotlight on care. My name is Virginia Naeve and I'm a co host for this caregiving podcast. My co host Mr. Steve O. Leary can't be with us today. But he will be back for our next podcast. I'm happy to introduce our guest today who's going to tell us how to lower our caregiving stress levels, as well as minimize the stress felt by our loved one with dementia. Dr. Natalie Edmonds is a board certified Geropsychologist, she specializes in helping families manage the challenges of caring for a loved one with dementia. So families can have more peace, joy and connection in what is often a very scary journey. She left her full time hospital job to create Dementia Care blazers, an online resource for Dementia Caregivers. Her company was named the 2022 caregiving organization of the year. Her weekly YouTube channel has over 120,000 subscribers, and over 10 million views. She offers an online program for family caregivers to receive guidance and support. She trains healthcare providers worldwide on best dementia care practices, and has published several articles and book chapters. We'll put show notes in our show notes, we'll put the links where you can get in touch with her online services. So welcome, Natalie, we're so happy to have you here with us today.
Natalie 02:02
Oh, thank you, Virginia, I'm excited to be here.
Virginia 02:05
You know, I was trying to find somebody who could help us with the topic of caregiver stress. And I came upon your YouTube video on four common dementia caregiver mistakes. And the reason I know this is going to be so helpful is that I remember making all of the same mistakes you're talking about. And I wish I had known you a lot sooner. So Natalie, tell us why you came up with the four mistakes you're gonna talk about.
Natalie 02:34
Mostly, because these are four things that I think would come naturally to us when we communicate with a lot of people in our day to day lives. But when a loved one has dementia, it's going to require us to adjust our interactions, our approaches and our communication. So it's like you're learning an entirely new language or communication strategy. So it's almost like we're trying to break some habits in some way. And so I thought these would be great because they're common, and even though they're mistakes, technically, it does add to caregiver stress, because the more we make these mistakes, the more difficult caregiving becomes, and the more likely the person with dementia will start to have some difficult related behaviors and start to have a little bit more of that pushback. So I thought, if we can at least minimize how often these four things happen, things can improve significantly.
Virginia 03:29
Oh, yeah. Just wait till everybody hears these points. I know they're gonna go Oh, okay. All right, that would have been better. Okay. Tell us about mistake number one, correcting.
Natalie 03:46
When somebody has dementia, we're talking about dementia, caregiving in particular here, that the person is going to make some mistakes, they're going to forget how to do some things, they're going to do some things wrong, they're going to say things that totally aren't true or might not be correct. And typically, in most of our lives, if we're talking to somebody and they say something blatantly wrong, or they're doing something wrong, we might just say, Oh, hey, actually, it's this or that's not the way you do it, you do this instead, that would be a natural interaction. But the thing when the person has dementia, you would be doing that so often, that it's going to drive strain in the relationship. Plus, sometimes people with dementia might not realize they have dementia, or they might not believe they have dementia. And so the more you highlight their weaknesses, their impairments, their challenges, the more again, strain and tension is going to be put on your relationship, which is only going to make it that much harder for them to want to accept your help in the future. And even if they did understand they had dementia and something was wrong. constantly correcting somebody like isn't it's not going to make them feel good. I use the rule of thumb that if safety is not an issue Let them do things incorrectly let them say things incorrectly. And if there really is a problem where you need to correct some information, like maybe they said something incorrectly to somebody else, you could update that person when the person with dementia is not around, or maybe when they're engaged in something else, you can do it in a way that respects their dignity and doesn't like highlight the fact that whatever they said isn't true.
Virginia 05:23
Yes, yes. I remember when mom looked at me, and she said, Oh, I haven't seen Betty in weeks. And I said, Mom, we had lunch with her yesterday. And she got so frustrated. And I thought, Why isn't she getting this? I it took me a long time, like I said, to learn how to communicate differently with her. Tell us about mistake number two, arguing
Natalie 05:55
This is pretty straightforward and simple. Yeah, like arguing with anybody usually doesn't go over well, but especially for the person with dementia. Again, it's going to be one of those things where it puts strain on the relationship. But also, ultimately will all these mistakes do is just make caregiving stress higher for you,
Virginia 06:15
both people, both people lose the stress you feel, and the stress they feel just isn't worth it.
Natalie 06:23
It's totally not and again, and when we think about dementia, caregiving and the time you have left with your loved one, which nobody knows for sure. But we know the time is limited, and they are going to continue to progress and decline. Do you truly want to spend their last chapters your last chapter with them in a way where you're constantly correcting or arguing or doing some of these things that don't really feel good?
Virginia 06:47
You just tried to a lot of times, what do you do you try to change the subject,
Natalie 06:53
we have to be careful. A lot of times when somebody with dementia says something and we want to say you know that's not true, they came and visited or whatever the case may be. Sometimes people are like, Okay, I'm not supposed to argue let's just change the subject. But at the same time, when we do that, we're totally discounting what they're trying to say. We want to acknowledge what they're saying. And it's okay to have a conversation about something that may not be entirely accurate. So for example, if they say, I haven't seen Betty in so long, we don't want to say, Oh, how is your lunch today? Right? We don't want to just like change the subject like that. You can say, it sounds like you Miss Betty, like you can identify the emotion underneath what they're saying. And you don't have to correct and it doesn't have to be an argument. You don't have to say Betty was just here yesterday. It's something to the effect of, oh, you Miss Betty, or tell me what you want to tell Betty? Like, let's talk about Betty, you know, like it can be a lovely conversation, even though it's not technically, all the facts aren't correct.
Virginia 07:53
And that's kind of a skill that you can pick up when you are in this journey, correct?
Natalie 07:59
Absolutely. It's so much of a skill, like one of the important things to know is that we nobody is born knowing exactly how to care for somebody with dementia. We don't know this naturally. And because it's such a different type of communication than we're used to, of course, we're going to mess up, of course, we're going to say things that make them upset. Of course, maybe we might say things that we wish we didn't like all of that is just normal and part of the caregiving experience. So it's important, we don't beat ourselves up over that. But the more you practice, the more creative you get, the more flexible in your thinking you get. Plus, I always recommend that if there is a common situation that's happening repeatedly, like let's say your mom Frequently Asked about Betty, well, now that we know that the situation, we could take some time and prepare for that. Okay, what are some ideas the next time she asks about Betty? What might be something I try saying? And so you can prepare in that way as well. But you're totally right. It's skill. It's not that some people are better at it than others, and some people will never be good at it. It's a matter of consciously on purpose thinking, What can I do differently next time? What did I like about that situation? How did they respond to what I just said? Did it seem to go over smoothly? Did it seem to make them more upset? You in a way become a dementia detective and start to notice all these clues of what seems to set them off? What seems to help them?
Virginia 09:24
I didn't know what dementia was. When mom first got it. I had no idea. We hadn't gotten a diagnosis. I didn't know what was going on. So I think I kept trying to correct her. I did argue I didn't know what was going on. But now there's there is so much more information out there now on on dementia and Alzheimer's.
Natalie 09:45
Right. What made you think that she had dementia at what point did you realize that might be something going on?
Virginia 09:50
Well, one of the very first thing that happened that made me realize something was wrong as she at my father's memorial service looked at my mother in law whom she knew very well, and said, I know I should know you. I know, I should know you. And I looked at her and I thought, what? Oh, my goodness. And then the day she got upset with me for arguing about Betty. She picked up her hamburger and threw it at me. So I knew, at that point, I thought, okay, there's something really going on here. And I don't know what it is. And I need to find out.
Natalie 10:30
Right? There are still lots of people out there who contact me daily who tell me their loved one does not have an official dementia diagnosis. But they really suspect that that's the case. In fact, one of my friends was just visiting here from out of state. And she said she thinks her grandmother had dementia, but never had a diagnosis. And I asked her, I'm like, Well, what makes you think she had dementia? And she said, because she always wanted to go home, even though she was home,
Virginia 10:54
right? Or they're looking at their spouse saying, where's my spouse? You know, they're looking at their husband and saying, Where is he and he's right there.
Natalie 11:02
Fortunately, there is a lot more information out there. But it's still not as widespread as it could be even within the healthcare field.
Virginia 11:10
I know mom's doctor called it MCI for years. And I thought to myself, I'm wondering if I know more than he does, because I'm identifying this as Alzheimer's, dementia, or some other form of dementia, because by then I'd done some research, but he kept calling it MCI. And I thought this is not mild.
Natalie 11:34
And it's hard. You know, for mild cognitive impairment, that often happens before somebody progresses to the stage where they have Alzheimer's disease. But it's interesting. It's it's not dementia is not something that we could just take a blood test or look at a picture of the brain and say, This is what's going on, it's not that clear cut, and everybody has their own level of comfort, or what they take as evidence to support a diagnosis. So if the doctor is just looking at the person in the doctor's office, they might just and that's all the information they're looking at, it might look mild, because sometimes people with dementia can hold themselves together during a short appointment, that it doesn't look bad at all, but the family member who's with them much more can see the really like hard times challenging times difficult times that the doctor doesn't necessarily see. And without formal testing, and really great collateral interviews with family members. They're not necessarily ever going to know that.
Virginia 12:30
Absolutely. I remember mom's Doctor looking at her saying, Whoa helen how are you? And she goes, I'm fine. I'm sitting there going? What? Watch my lips,
Natalie 12:42
you're in the background trying to explain like, she's not fine. And that's another thing is, if their language is pretty good. If they're able to respond to a basic question, then it really does often look like they're totally fine, especially for short appointment.
Virginia 12:56
Absolutely. 100% true. Okay, let's see, we are mistake number three, reasoning.
Natalie 13:03
This is one of those things that we would do normally, in most conversations, try to reason with somebody and make sense of what they're saying and explain our point of view and provide them the evidence for whatever they're saying how it's not true. But when it comes to the person with dementia, most people with dementia lose that reasoning ability, it's a higher level ability to, you know, hold in pieces of information, see both sides of things understand what's going on, like for most people, they're not going to be able to do that. This is where burnout and caregiver stress really comes into play. Because you certainly can't win at this. And you're just going to be explaining the same thing over and over or trying to come up with different ways to get them to see something the way you want them to or believe something that you know to be true. And it's going to do nothing but make them more upset, which ultimately will make you the caregiver more upset.
Virginia 13:55
Exactly. I loved your example about you're stealing my money.
Natalie 14:01
Oh, yes. I don't remember that video what I said in that example, but a lot of times, people with dementia will accuse the family members of stealing their money, for instance, and then you can try to explain to them all day long. Here's your bank statements. See this, you know, you know, everything this was for your home mortgage, this was for your electricity, this is what's and none of that is doing anything, versus just letting them know like, it sounds like you're worried about your money. Like I want to make sure everything you need is safe and secure. And you can even be proactive in finding ways okay, they have a concern about their money. What can we do to help them feel more comfortable about their money? Like what are some things we might be able to set up in place where they feel like they still have control so much in dementia when they lose their abilities? Because we have to we come in and we provide the help, but we forget it. It's taking away so much from them, how can we still give them you know, things that they can participate in that are meaningful? All that are important to them that don't have really big ramifications if they do it wrong. You know, just because you have to take over finances doesn't mean you can't you can't sit down together and do it. Or you can't say, hey, you know, what should we buy for dinner today? I have $20. What what do you want to buy? Like you can still incorporate them in financial discussions in ways that don't have that negative side effect?
Virginia 15:24
Ah, good point.
Natalie 15:25
What did I say in the video? What was my example there?
Virginia 15:29
showing their bank account to them? And saying, oh, it just does not seem to me like we're missing money. You feel like we're missing money?
R 15:37
That's not gonna go well.
Virginia 15:40
So, yes,
Natalie 15:43
I often say like, what do you want them to do? And then how can you get them to do that without trying to reason with them? So recently, somebody inside one of my programs was saying, they, she went out with her mom, and they were running a bunch of errands and her mom got out of the car and ran all the errands with her. But when they got back to the house, the mom was like, that's not my house. I'm not getting out of the car. We're not going back in there. And this, you know, careblazer was like, Oh, my gosh, what do I do? Like she wouldn't get out of the car. And she and she tried to pull up the registration in the car to show the address. This is your house, this is where you live, she jumped right into the reasoning. And her mom was like, that's not my house, that's not happening. So instead, like, the question becomes, how do I get them to go inside of that house, without them necessarily needing to believe it's their house. So in this case, it's just another errand because they had been running errands all day. Here, we have one last errand, we have to stop in here. So she had a really negative reaction to That's my house, but she was doing fine running errands. So we can, you know, be creative and try to think about is, how do I get them to do what I need them to do? Or stop what I really want them to stop? That doesn't, they don't necessarily need to understand the full thing or believe it like we believe it?
Virginia 16:52
Ah, interesting. Yeah, just give them a different reason for going into what you're parked out in front of, and don't insist that it that it is their house, when they're saying, that's not my house,
Natalie 17:09
right. And that applies to anything, it's like, you're not trying to get them to understand the reasoning from your perspective, you're trying to get them to do whatever is necessary for their safety, or whatever the case may be. So even with finances, they might not need to understand the mortgage goes out on the first that's an automatic debit. You might not need to explain all of that. But you do, you might want to ask yourself, How can I get them to stop being so upset about the finances? And so then you would start looking at okay, when do they ask the questions? What are the triggers? What if I got ahead of it and gave them 10? Like, here's $10. I just found here you go or giving them a fake credit card or one of those credit cards that are prepaid with money. So if they do spend it on something that the damage is minimized, like you can figure out how do I give them what they want, from their perspective without them having to understand everything?
Virginia 18:02
Got it? Got it. You had mentioned in the video, okay, you can do these things that you're talking about. But if there's safety involved, that's when you can step over your line that you're kind of trying to draw here. If it's their safety,
Natalie 18:19
it's important to know there is no one size fits all in Dementia Care truly. So also with these mistakes, if you try like let's say you tried reasoning with your loved one, and you're like, Oh, the mortgage payment went out, that's why that money is gone. And they're like, Okay, well, you just got feedback, that's an okay approach, like you want to the way you know, whether your approach is working with your loved one is pay attention to how they respond to it. If they get more upset or frustrated by what you just said, that's just feedback. Okay, maybe I'll try something different next time. If you do one of these mistakes, you know, and they respond totally fine. That is an indication maybe it's okay to do. But in terms of safety, in particular, I believe it's around the whole, don't correct them. Don't correct them or stop them from doing something unless it's a true safety issue at hand. Otherwise, if they're, you know, playing a game, and they're following all the rules wrong, or they're reading a book, and the book is upside down, but they seem totally engaged, and they seem like they're into it. There's no harm in that allow that to happen.
Virginia 19:22
Let them go. Yeah, let them go. But these are such good tips. Okay, mistake number four, testing.
Natalie 19:33
This is so common. So sometimes family members from a good place of their heart, even friends, visitors, even doctors, sometimes what we do is we test them like we're trying to see what they know. So for example, let's say you're visiting your loved one and you're bringing one of their kids with you. When you go see the loved one you're like, Do you know who this is? Like that's testing them you're trying to test to see Do they know who they are versus saying, Hey, Mom, this is Jan, your oldest daughter, look, she stopped by to say hi to you, you just give them the information versus leaving them in a place where they're going to be in distress or anxious or concerned about what's going on or feeling like they have to pretend when they're not really sure. And this happens to when we sometimes say things like, Well, what did you eat yesterday? What did we do? What are we going to do tomorrow? Remember, I told you this, come on, think about it. It's so demeaning to them, it can be such a hard experience for them to have because either, like, if they don't remember it, they might get upset, but they also might get sad or depressed. And a lot of times family members are doing this because they're trying to see where their loved one is with their thinking. But believe me just spending any time with them at all, you'll still get experiences of you know how they're doing, that will happen naturally, you'll get signs, I say like leave the official testing up to the doctors and healthcare appointments. If they're really trying to see how your loved one is doing. They are going to ask those questions like What's today's date? What day of the week? Is it? Where are you? They'll ask those questions, because often they need to document in their records, but we don't have to risk our relationship with them and put more strain on our relationship by just doing that ourselves for our own curiosity.
Virginia 21:23
Right, right. There was a Thanksgiving meal at Mom's assisted living facility. And I had of course told Mom about it weeks in advance. And we got there and we sat down in the dining room and she goes, Why didn't you tell me? We were having this. And I said, of course I hadn't learned your principles yet. And I said, Mom, I told you this several times, we were going to have this wonderful Thanksgiving meal. And she said, No, you didn't. And I said, Yeah, I kind of did. And then the chef came over. And he said, How are you enjoying your meal? And she said, Well, my daughter didn't tell me that this was going to be happening. And he said, Oh, that's terrible. Oh, we should have told you. And this big look of relief came over her face. And from then on, we'd had a fine meal.
Natalie 22:18
Yes, absolutely. And that's so good. And sometimes people will say things like this, like, Well, why didn't you tell me and that's just such an oh my gosh, it slipped my mind. I told you I apologize. I can't believe I forgot. One of my care Blazers was telling me her husband woke up from a nap recently and was like, Why did you rearrange the living room furniture urge? I didn't rearrange a living furniture. But then she's like, Oh, I just thought you'd like it. That way, we can put it back the way you know. And so you just kind of like what's the way to offer them some relief and reassurance. And these, like you said, it's a skill you learn as you go, I would say, Do not ever beat yourself up or get down on yourself. When you respond in the natural way we would respond to most humans, like for you, when you're thinking back to all the ways you responded to your mom, beating yourself up over that or being down on yourself over that will never do anything to make the to make anything better. It makes you feel awful. It doesn't change what happened. When we're living in a time, especially when you was it's better now. But you know, there. Nobody told us nobody gave us the class on what to say or what to do. Nevermind. We're also human and caregiving and probably sleep deprived and have all kinds of other life things still going on. It's not like all of other life's responsibilities go on hold when you become a caregiver. And so we have to have some compassion for ourselves that things aren't going to go perfect ever. And that's totally okay.
Virginia 23:45
That's really good to keep in mind. Because everybody's going to make these mistakes. You get tired, you just you get tired. And you think, Oh, I don't know how much more of this I can take.
Natalie 23:56
Exactly. We're all going to make mistakes, even after you learn about them. It's going to happen from time to time, and instead of making it mean, we're horrible, or we've done something wrong, we can totally make it mean, I'm human. I still make mistakes. We all do.
Virginia 24:11
We all do. Okay, that's that's 1 2 3 and four correcting, arguing, reasoning and testing. And can you think of anything you want to add here? Natalie, any final thoughts before we wrap up?
Natalie 24:25
I would say that caregiving is hard dementia caregiving is especially hard, but we make it harder by how we talk to ourselves about how we're doing through it. And so I would just recommend everybody dealing with stress and going through a hard time. Imagine this was somebody you truly love going through a hard time maybe even one of your grandchildren children's just a great best friend. And if they were going through a hard time and maybe said something they shouldn't have said or made one of these mistakes. What would you tell them? Would you tell them oh my gosh, I can't believe you did that. You're horrible. You should It didn't quit right now, like you would never say that. But we talk to ourselves like that all the time. And that is only going to make caregiving harder. The best skill anybody can learn is how to support themselves in their in their caregiving journey. And it starts with just how you talk to yourself when real life happens,
Virginia 25:19
and your stress is going to go down. And the stress of the person with dementia is going to go down life, life would be so much simpler and smoother. If we would all just keep these principles in mind. We can't thank you enough for being here with us today. Natalie. I know we have a lot of people listening to this podcast will understand that these things really will be stress reducing in the long run if they just practice the tips. And we'll put in our show notes links where people can find you online and find your information. And for our listeners. Thank you for joining us today. And please join us again soon on spotlight on care.
Outro 26:03
Spotlight on care is produced by the University of California Irvine Institute on memory impairments and neurological disorders. UCI mind interviews focus on personal caregiving journeys and may not represent the views of UCI mind. individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu