Full Episode Transcript

Nancy Treaster: We’re talking about communications in the beginning.

 

Nancy Treaster: in the beginning, is really when you’re mostly helping your care receiver so that they can maintain some of their independence.

 

Nancy Treaster: We have 4 main tips.

 

Nancy Treaster: The first tip is to help them plan their day.

 

Nancy Treaster: The second tip is about simplifying and minimizing.

 

Nancy Treaster: The third tip is about positive reinforcement and body language, and when I say body language, I mean your body language, and their body language. Yeah.

 

Nancy Treaster: And the fourth tip is about not being scared of the truth they need to hear.

 

Nancy Treaster: But first, let’s have a Quick Candid Conversation around Communication.

 

Sue Ryan: Yeah.

 

Nancy Treaster: Communication is about constant adjustment and observing, observe and adjust, observe and adjust.

 

Nancy Treaster: and you’re going to spend a lot of time understanding what they cannot understand. But you’re going to spend a lot of time

 

Nancy Treaster: trying to figure out what they can understand, and then adjusting your communication, level and style to help them. As we said, so they can maintain their independence.

 

Nancy Treaster: So let’s start with the first tip.

 

Nancy Treaster: The first tip is about helping them plan their day.

 

Nancy Treaster: It’s about understanding what they can accomplish. Because, remember, you’re observing, and you’re adjusting the expectations of what they can accomplish. So you’re helping them create their list of what they’re going to do today. That’s reasonable that they can accomplish.

 

Nancy Treaster: And then throughout the day you’re going to come back and prompt them so that they can feel value, feel accomplished at the end of the day that they got things done.

 

Sue Ryan: I would like, I really want to reinforce what you just said so often in the beginning. We’ll say I want to remind them of what to do.

 

Sue Ryan: And because we’re used to being able to remind them of things. When you don’t have a neuro-cognitive disorder, you could say, Hey, honey, don’t forget to stop and get the milk at the grocery store.

 

Sue Ryan: With that they don’t remember it. And so your language is very intentional. We’re going to prompt them. So we’re going to be the one that helps put it in front of them. So they are able to remember.

 

Nancy Treaster: So that is so very important.

 

Nancy Treaster: I love that clarification because in your mind you’re thinking you’re reminding them right. But you’re not. They can’t remember. You’re not reminding them, and the sooner you can let go of the concept of reminding and accept the concept of prompting, your attitude will be so much better about this whole thing, so.

 

Sue Ryan: Language for you and for them for everybody. It’s going to be so much more supportive.

 

Sue Ryan: and you won’t be as aggravated because they don’t remember.

 

Nancy Treaster: So I would leave little sticky notes if it was something that needed to be accomplished at the computer at my husband’s desk. There would be sticky notes if it was something he needed to accomplish even that. His lunch was in the refrigerator. There’s a sticky note on the refrigerator.

 

Nancy Treaster: When we go out with our friends he would make fun of me, that I was the queen of sticky notes, and that I just let these crazy, sticky notes all over the place. Haha! I was leaving them for him, but it did help, and it at the end he thought it was funny.

 

Nancy Treaster: but he felt valued at the end of the day, and accomplished, which is really what. At this point I was going for.

 

Sue Ryan: And they he kept his independence longer. Felt like he had it. Yeah, what I did with my husband, Jack. He was a list, Guy. He his lists, had list, and so I created another list and a every evening I would put together a list, and in the morning we would go over the list, and I would have the list left out where he could see it, and all day long we would have the list, and we would refer to it throughout the day, and I would sometimes say, Hey! Because he could still read.

 

Sue Ryan: and I would say, Hey, honey, I don’t remember what’s next on our list? What have we got coming up? And it would remind him to go back and to look at that so that we could. We could make sure that we were doing things.

 

Sue Ryan: but it also helped him not to have to feel like he needed to remember.

 

Nancy Treaster: You know it’s interesting you mentioned about. He could still read, because there did come a time where I still left notes, even though my husband really couldn’t read, because often I would get up before him and go on a run in the neighborhood.

 

Nancy Treaster: This is before I actually got a treadmill, so that I didn’t leave the house. There became a time where I wasn’t comfortable leaving the house, so I have a treadmill, but I would go on a run, and so I literally would put by the coffee maker a picture of a stick person running.

 

Nancy Treaster: cause I thought he needs to know where I am, but he couldn’t read, so that was the best I could. I thought, you know, we’re back to hieroglyphics. Things go back what goes around, comes around.

 

Sue Ryan: And it worked, but it worked. It’s adaptation. And as over time, these things are going to shift and change, and yet it still supports, and he was used to looking at the sticky note. Now he just saw something differently.

 

Nancy Treaster: Yes, and it really helps us with tip 2, right tip 2 is about simplify and minimize.

 

Nancy Treaster: So, but it’s an example of simplifying and simplifying is also adjusting and observing, observe and adjust, and the same thing about simplification. What you can give them instructions on to do one day will quickly not be the level of instruction they can absorb a week later, or 2 weeks later.

 

Nancy Treaster: You can give instruction, let’s say, at the beginning I could tell my husband before we needed to leave the house to go out to lunch. For example, I’d say, you know, can you go get your shower now so that we’re ready to go out so we can leave and go out to lunch. Now you have to give them an inordinate amount of extra time to get the things done, but he could go in, get a shower, come back out dressed, and everything was fine – until he can’t.

 

Until getting a shower, and all the things that go with that are just too much. So eventually it’s go into the bathroom and say, Why don’t you take your shower? Now? We’re getting ready to go out to lunch, and then it’s waiting around, maybe inconspicuously, until the shower’s done to say, Oh, what are you going to wear? And you walk with them to their closet to pick out their clothes, because they don’t realize that’s the next thing they have to do, and so on. I know you have good examples of this, too, as well. 

 

Sue Ryan: Well, it’s just to your point. It’s just adapting. And it’s thinking like, okay. In the beginning you could say, Go, take a shower. And then some of the things that I would do is I would then write down, okay, what is every step of taking a shower? Well, I automatically, if I’ve like. Okay, I’ve got to go. Take a shower. I you know, I just unconsciously run through all the things that I need to do, and I’m putting the clothes out, and all of those things I literally would sit right down, each step of it, and I got in the routine for myself of figuring out.

 

Sue Ryan: hey! What does he have if there are 7 things associated with it, or 15 things associated? What could he possibly remember in the very beginning, how do I prompt him? And what does he have the capacity to remember? And then how do I support him with the next step? Those things? And again those kind of things are going to be shifting over and over.

 

Nancy Treaster: Right? And we’re going to talk in another podcast around bathing and all the steps. How that progresses or digresses, if you will, through the process. But all of these things, grooming, bathing, putting on their clothes.

 

Nancy Treaster: observe what they can do. Don’t be shocked when they can’t do it at that level of detail the next time, and you have to slowly, slowly insert yourself into all these processes, and the level of insertion you have is going to grow.

 

Sue Ryan: But again, it’s always toward their independence and dignity. I’ll share one other quick example when we would go out to eat with friends. In the beginning, when you’re just going out to dinner with friends you don’t think about. Well, what are we going to have? You may remember a meal you’d like before. As their world gets smaller.

 

Sue Ryan: It’s harder for them to concentrate on multiple things. So even if they could still read the menu, they’ve got other people talking and things like that that could be distracting for them. If we were going to be going to a restaurant, I would pull up the menu online. And I would say, Hey, honey, I want to just kind of look and see. I know they’ve made some changes to their menu. We would walk through the menu and decide kind of pre decide what it was we thought we wanted to get. Then when we got to the restaurant.

 

Sue Ryan: I would say, Oh, honey, I’m so excited about having such and such that we talked about earlier that just sounded so good when we looked at the menu.

 

Sue Ryan: and so it would be a little prompter for him of that. And then, when the server came.

 

Sue Ryan: I would say, You know, this is what I’m going to have. And say, and, honey, I’m so excited. Do you still want to have that  – whatever it was, so they didn’t have to do that. And then the server also didn’t recognize there was anything wrong. And we’ve got an another tip for that farther along.

 

Nancy Treaster: I love that Sue. I would do something similar, but more. When we were at the restaurant my husband would hold his menu and then look at me like, what are we doing here? And what am I going to do? And I would always pick 2 things that I thought he might want to choose between how to give him 2 choices and say, Oh, they have Filet Mignon, and they have grilled chicken to either one of those sound good to you, he would say. I’d like a Filet Mignon, and all would be good, but no discussion about it. It was really like, you said, to maintain his dignity and his independence so that he could still go out to dinner and feel good about himself, but at the same time when the waiter would come, because they, thank goodness, do ask the woman first. They would ask me. I would say, I’m going to have this. And I think, you’re going to have this filet mignon right? And that will be the end of it.That’s part of the minimize. When we say, simplify and minimize. That’s part of the minimize umbrella if you will. Meals at restaurants and also meals at home. When I say, minimize also means minimize disruptions.

 

Nancy Treaster: So I found when we did meals at home, I needed to mute the TV. I needed to get everything set up on the table before I call my husband to come. Sit at the table, because if I had to get up and go get the butter or the salt.

 

Nancy Treaster: Soon as I stood up he’d stand up. I’ve lost him. And now, 15 or 20 minutes later, to get him back to the table because he would wander around. It was just, you know, a whole ordeal. So minimize distractions and be as upfront prepared as possible was a huge part of how we got through that early on communication, and supporting him so that he could maintain his independence.

 

Sue Ryan: And to your point. What you’ve raised is this is going to manifest itself in a variety of different ways. The more we understand about observing and journaling and keeping track of things. When something starts to get out of the ordinary, we can adapt much more easily and much more quickly.

 

Nancy Treaster: And we’re going to talk about a lot more of these things like I said, we talk about bathing and grooming. You’re going to hear a lot more about minimizing and simplifying. And really the order you can expect things to go in.

 

Nancy Treaster: So let’s move on to tip 3.  Tip 3 is about positive reinforcement and body language.

 

Nancy Treaster: Now I’m not a sappy kind of girl. You get a little positive reinforcement from me, and you should be pretty happy about that. That says a lot, but I hired a part-time caregiver to come in and spend a few hours a week at our house, and she was all about excellent job using the soap.

 

Nancy Treaster: Great job putting on your underwear. And what a oh, thank you so much for brushing your teeth!

 

Nancy Treaster: And I was looking at her like she was crazy. But then after I saw how well my husband responded to all of that positive reinforcement, I changed my whole demeanor. You wouldn’t recognize me. You still wouldn’t recognize me because I still do it today

 

Nancy Treaster: it has things changed so much. You can’t help but say, thank you, and great job! with a smile on your face. So back to body language, it changes the tone of your voice. It changes the look on your face. They’re feeding as much off your tone and the look on your face as they are off the words you’re saying. And so everybody feels better about what’s being said and what’s going on, and it creates a much more positive, less fearful scenario.

 

Sue Ryan: And to your point. The last thing you said is really powerful, because we’re looking at it sometimes from our lens. They’re not sure what it is they should remember, or what they don’t remember in the beginning they don’t necessarily remember what they remember or know what they don’t remember. And so when they’re being given positive reinforcements very similar. If you’ve had a child to reinforce you, something positive, they begin to learn that. Oh, this is good, so they feel good about what they’ve done when they’ve got that uncertainty, and you’re reassuring them and calming them. It really helps them to stay positive and more calm, as well.

 

Nancy Treaster: And, I feel the obligation to give the opposite, so that people can understand the difference.

 

Nancy Treaster: Which is – Why aren’t you using the soap. Why aren’t you brushing your teeth? Why are you brushing your teeth like that, you know? Of course you put your underwear on next.  All that adds no value whatsoever. You’re not helping with their dignity. You’re not helping them feel good about things.

 

Sue Ryan: And you’re not helping you.

 

Nancy Treaster: You’re demeaning them. Think about the tone of my voice right? And think about the look on my face when I’m saying those things. I’m creating a antagonistic situation. And then I wonder why this situation’s very antagonistic, so positive language, body, positive body, language. Look them, get at their level, look them in the eye as best as much as you can, not just from the corner over there, but make sure they have your full attention, and use positive language and positive body language, both.

 

Nancy Treaster: The fourth tip is around the truth they need to hear. And so this is really something you coined that I absolutely am so on board with, and I loved it when you said it to me the first time I thought. That is it so? Tell us a little more about it.

 

Sue Ryan: One of the things people would talk about is telling the truth

 

Sue Ryan: if your caregiver needed to hear something, and people like well, you know I’m not going to lie to them. I’m going to tell them what they need to hear.

 

Sue Ryan: and so a layer of that is being compassionate in the truth and compassionate in in what you’re sharing, and I took it farther, because when I was growing up we were taught not to lie.

 

Sue Ryan: I don’t lie well, I’m sure I have a tell. It’s not a good thing. However, what I recognized with all of the people who I provided care for is that I was telling the truth they needed to hear, rather than necessarily what the actual truth was, and to the point we just talked about with body language, with demeanor, with everything is. 

 

Sue Ryan: For example, if we were going to go on a trip and we were going to be going multiple places. And we were going to do going to be doing a lot of different things. And all this the truth that was valuable for them to hear is, Hey, we’re going to go out for a little while. This is this is exciting, that’s all they needed. That’s all they needed to know.

 

Sue Ryan: and when you think about it in terms, and that the real takeaway from this is, it is less about what the actual truth is, it’s how do we stay in integrity that we’re telling the truth that we’re in alignment with? That’s what is most valuable for them to hear.

 

Nancy Treaster: And it will minimize their anxiety and frustration.

 

Nancy Treaster: You’re helping them. That’s the hardest part to absorb. You’re helping them. If you listen to the driving episode. You’ll actually hear me talk a little bit about the things I did that were the truth my husband needed to hear about where the keys were, for example, or why the car wouldn’t start. And that’s just one of a million examples. I think in every podcast we could have a discussion around the truth they need to hear on that topic. Right? 

 

Nancy Treaster: All right. Well, in this episode we talked about communication in the beginning, which is really when we’re helping our care receiver, maintain as much independence as possible.

 

Nancy Treaster: We talked about 4 main tips.

 

Nancy Treaster: The first tip is about really helping them plan their day.

 

Nancy Treaster: Second tip is around, simplify, minimize. Minimizing distractions, minimizing what they have in front of them.

 

Nancy Treaster: The third tip is around positive reinforcement and body language. And it’s not just your our body language, but it’s watching their body language, too, and understanding how to respond to that.

 

Nancy Treaster: And the fourth is, don’t be scared of the truth they need to hear.

 

Nancy Treaster: Everything you’re going through when it comes to communication in the beginning feels very difficult and very strange, and you’re adapting and adjusting throughout. Just remember, this is a phase.

 

You will manage through this situation, and you will get through this phase. It will end and it will get better.

 

Sue Ryan: We’re all on this journey together.

 

Sue Ryan: You got this.

 

Nancy Treaster: Yes, you do.