Alzheimer's Thriver
Feeling Lost After an Alzheimer's Diagnosis? How Changing Your Story Can Change Your Life
Alzheimer's Thriver
Episode 20 Dignity and Alzheimer's
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"Words From the Horse's Mouth"
What does dignity really feel like for someone living with Alzheimer’s? In this episode, Janna and Larry share real-life moments where dignity can either be preserved—or unintentionally taken away. From being interrupted or rushed, to the power of eye contact and inclusion, this conversation offers practical, compassionate ways to protect the person behind the disease.
In this deeply personal and practical episode, we explore how dignity is not something Alzheimer’s can take—it’s something that must be actively protected. As memory fades and communication becomes more difficult, the way we respond becomes everything.
This episode walks through real-life situations where dignity can quietly slip away—and how small shifts in language, tone, and approach can restore it. Whether you're a spouse, family member, or support person, or you yourself have the disease, you’ll come away with a clearer understanding of how to go beyond just managing situation.
Key Takeaways
• Dignity is inherent and not dependent on memory
• Small habits like interrupting can reduce dignity
• Eye contact and acknowledgment restore connection
• Inclusion in tasks builds purpose
• People with Alzheimer’s are still aware
Resources
Alzheimer’s Association – Communication Tips
Be sure to go to our website at alzheimersthriver.org to learn more about Larry and Janna's adventures.
Episode 20: Dignity and Alzheimer's
[Janna plays Flute with a Classical guitar accompaniment]
Janna: Hi, this is Janna Wagner, an Alzheimer's ThriverTM, and I am in my 11th year of Alzheimer's.
Larry: And this is Larry, her wonderful, kind, loving, husband... (Laughs)...
Janna: (Sarcastically) Oh Brother, give it a rest (Laughs)...
Larry: ...and I'm thriving as well. And we're hearing from...
Janna: “...the horse's mouth.”
Today, we're going to talk about some of the latest developments in our journey with Buddy Al.
Larry: And for those of you that are just joining us for the first time, Buddy Al is the name we've given to our not-so-friendly friend, Alzheimer's. And we try to keep it light, right?
Janna: We try to, yeah.
Larry: We try to. You know, the other day, I found, as I was leaving our house, that I was kind of rushing you...
Janna: (Sarcastically) No...
Larry: ...and pulling your arm, because I was in a hurry, as usual, and I didn't really think much of it. I was just like, “...come on,” and I was pulling you. And on another occasion, I found myself answering your question before you finished asking it.
Janna: You mean he butted in? Oh, you did.
Larry: Well, yeah, as well as, like, interrupting you in mid-sentence to talk. It's just a knee-jerk behavior that I've sort of developed. And you were talking to me about that, how it would be nice if I would listen a little bit more before I start jumping in there and let you finish. And it gave me an idea, I mean, I've heard this term before, dignity, and that people need dignity.
Janna: He doesn't use it, but he's heard of it. (They laugh) And, you know, I've looked up the definition of it, because I thought, I think I know what dignity means, but here's a pretty good, concise definition. “It's the inherent worth and respect every person deserves simply for being human. It's about recognizing someone's value, treating them with fairness, and allowing them to live with self-respect and autonomy.” The autonomy part might be just based on you giving me permission if you want to give up your autonomy in a certain area.
Janna: (Jokingly) I'll be darned if I will.
Larry: Like maybe choosing a particular clothing item or something like that. But yeah, and I've heard that said, especially for senior citizens like we are, that people need to be treated with dignity. But let's go back to me pulling your arm and me interrupting you. How did that make you feel when I was doing that?
Janna: Like I wanted to kick him, like, come on, let me finish my sentence, at least.
Larry: And you know, you're walking, you're walking a little bit behind me. And I don't think I've ever read a study of why a person with Alzheimer's walks a couple paces behind.
Janna: Well, I can tell you why.
Larry: Okay, go ahead.
Janna: Well, because you have to watch your feet and be sure you're putting it down safely.
And you could stumble a little bit all the time. So, I'm cautious to be aware of where I set down my foot and lift it and everything around me. And I also have my hand ready to grab if I start to fall. But it goes pretty well.
Larry: I was talking to a person, another person who has Alzheimer's, and they said they got so frustrated because every... it was a lady... and her husband would always be a step behind her and she would slow down, then he would slow down, so that he could always be a step behind her. And we kind of had a little discussion around the room and something I hadn't thought of before, but... maybe you don't know which way, sometimes which way to turn left, which way to turn right. And by being a little bit behind me, you can see which way to go. Is that anything that you might be walking behind me for?
Janna: I like to look down at my feet and look where I'm aiming as I'm walking and I'm glancing up all the time.
Larry: So, I think what we've decided to do, what we've been doing, is we've been walking arm in arm and holding hands.
Janna: And yet sometimes if you put your hand on my shoulder, I feel like you're controlling me and putting control, I like, you know, be available for me to be caught, but make it
discreet.
Larry: Yeah. So, yeah. Cause sometimes I'll put my hand on your neck, the back of your neck and then you go, “I don't like that.” I can understand why. It's like when I was a kid, my mom used to do that, grab my neck. “You come with me young man.” So anyway, I didn't want it to be like that. So yeah, hand in hand and smiling. We do take, we do take walks.
I find that in Costco, what really works well for us is that you push the cart from behind and I kind of steer it in the front. So, if I'm going to go into the produce or I'm going to go into the dairy, I just kind of pull it in that direction and you push and it's kind of like being together.
Janna: I feel like I'm a part of it.
Yeah. Before that was kind of hard to stay together there in Costco. It's so, it's hard to be the person that, to be the one always lagging behind. If you feel like a part of the deal and helping.
Larry: So, this is kind of a new development, right? I mean.
Also, I'm thinking about how I want to answer certain things and how I want to respond or if I even want to respond, sometimes I don't even respond. Something that's been annoying you a lot lately is, that because I'm the one in communication on the phone with our plans and things like that, it seems like I'm on the phone all the time.
Janna: Yep.
Larry: And you find that to be showing a lack of dignity and respect for you being in the room. So how can we handle that one?
Janna: You're getting better and better to, like, if I come into the room to look up and acknowledge me. You know, it doesn't have to be a big deal, but just like nod of the head.
Larry: Okay. Well, that's good. That's good. Hey, you gave me a compliment. Okay. Write that down, everyone.
Janna: Don't get carried away now.
Larry: So, we heard a little story last night and it's kind of a funny one. (Pause) Yeah, I think I'm not going to, I'm not going to do that one. (They Laugh). You know, this is public, so I changed my mind.
Anyway, yeah, and showing dignity. Actually, something that I've never really thought about before because I just operate kind of, like I said, knee jerk reaction. I just sort of do my thing and I don't really think about it as much as you probably do. And you're pretty aware of what's going on.
Do you find yourself when you're stumbling... that's another development... finding the right words... Do you find yourself feeling, I don't know, subpar or something, or how do you handle that?
Janna: It's funny because I've always, you know, talked fast going forward, you know, and now I realize why there's people that stand there going, um, uh, ...they're filling in the air so they can say what they want to express. And I realize that we've grown into it so that you kind of have to make an appointment to say something and we need to find ways to graciously speak.
Larry: Do you think you stumble more when you're interrupted or when you're not being heard to the end of your thought?
Janna: Well, of course, yeah, of course.
Larry: And I think, you know, you have commented to me that you think I speak so fast
When I'm in a group with our family, to me, nothing's changed. We've always been that way. But for you, I think, how about processing those words Are you able to take in a lot of words and process the whole thing and keep it straight? How's that going?
Janna: Yeah, not so much. In fact, when I start walking, if you were to look at me, you'd see my, what's that called? Lips moving. You'd see my lips following whoever's talking and taking in the information that way.
And then, I speak, if there's a chance, my words. I’m always going to listen to what's going on. If I hang back at all, I'm totally out of the situation.
Larry: Yeah, and I have seen you in our groups. Sometimes you're just standing there, smiling, and not saying anything, and then I try to bring you in. But sometimes, don't you feel emotional, some kind of emotional feeling about not being able to say things when you're in a group?
Janna: Mmm, it's easy to feel like the victim and like, gosh, I wish I could express myself. And then I go, well, what can I do about that? I really can't expect them to think I should jump in and be outgoing. But I'll just at least try and say words under my breath and think and stay in and look for maybe look for a word to say or just say, oh, yeah, uh-huh.
Larry: Well, let's get back to showing dignity and feeling a sense of dignity. What is it that, what is it that you would want people to know?
Janna: (Interrupting) Why do I do, why do I do, why do I, there's an example.
Larry: Of you interrupting me?
Janna: (Sarcastically) What? What? No.
Larry: : What is it you would want people to know that would show, not to you necessarily because you don't know all these people out there, but just in general for a person who has Alzheimer's, what are some ways that you think we could show some respect?
Janna: Make eye contact, a soft eye, what's it called, eye contact, is that right? Yeah. And with a kind of a lilt in your cheek so that things are good, it's an ah-ha and it's a, a fence... (Long silence as Janna try’s to find the words).
Larry: So, this moment of silence right here, this has been happening. And as you think of the word sometimes you and I work together to help figure out the word. And then if we try too hard, sometimes you forget what it was you were going to say.
Janna: But you're working, you're working harder, I can tell, to let me have an open moment to say something.
Larry: So okay, so we were talking about a way that people could show you dignity and you said eye contact and, and I think that's important. Nod of the head can mean a lot.
Janna: Like somebody's trying to say something and, and to show that they're involved in what the conversation is, you can just.
Larry: Nod your head.
Janna: Nod your head, mm-hmm. Like you're listening.
Larry: And for me, a lot of people say, well, what are you doing for yourself? How are you doing, well, there's, like you're, you're taking naps every afternoon, right?
Janna: You bet.
Larry: And we're retired, that really has been a helpful way for us to schedule different things. And we have our routines, but you'll take a nap and then at night, you sleep a bit longer than I do. And so I'm able to get things done. You have your hobbies. You have your flute. By the way, everyone, those lovely flute songs you're hearing at the beginning of these podcasts, that's Janna.
Janna: And I think that's part of me staying healthy and being able to speak is with the music that gets my mouth opening and sound coming out and maybe it connects with some communication that otherwise would be unheard because I'd just be sitting there looking.
Larry: You know, it's so nice that we can, we've stayed married this long because.
Janna: Well, you're lucky.
Larry: This is our 49th year, next year is our big 50. And when you give up too soon in a relationship, I think you really never get to that point where you realize the different dimensions of love that there are and the different abilities that were God given to deal with, you know, conflict and anxiety and problems that come up. And so the insights that I've gotten, and I don't, right now I don't have dementia. At some point, everybody is going to have some degree of it, I'm sure, but right now I don't have it.
Janna: And so at this point. And you get in that situation where you think, it's just going to get worse, it's just going to be worse. But I decided to turn around and say, I'm going to do what I can to make this work. So I'm going to be listening with my lips and my ears to whoever's speaking and taking in the information, be right on the edge of saying something. A lot of times you don't get a word out, but you're involved. And that helps.
Larry: We watched a little clip on Michael J. Fox, who's an actor, did Back to the Future and so many others... a sitcom. He has Parkinson's. He had that same philosophy. It was like, “I'm not going to sit back and just do nothing. I'm going to do whatever I can.”
And we've talked about this before, but just if you guys haven't, let me just speak to the people out here. If you guys haven't checked out all of our podcasts, we do talk about diet. We talk about exercise. We talk about what we do for our brain and social activities and the music and the different things that we do. And so those are all really good to listen to, but, and I don't want to repeat myself here, but just to say that there's a lot of things you can do and a lot of things I can do if I'm not just waiting for you to go downhill, which...
Janna: I'd like to see you try. I'm not going to let you, not going to let that happen.
Larry: Yeah. And, you know, and I might mention too, that although we have three videos on YouTube, we plan to do more on YouTube, but we haven't done a lot on YouTube. It's quite a lot to get videos going and whatnot. But this, this audio is, we've got 19 of these. This is the 20th one. So, get out there, listen to them, try to, try to be encouraged.
Janna: You know, I get my, the most strength for myself I go, “Okay, I'm going to smile. It can be an inside smile or whatever, but lift my smile and you can't feel really rotten if you're smiling. It's very helpful. Gets me going. That's the first thing I do and get up in the morning.
Larry: Well, and so I, before we leave this podcast, I do want to reiterate that the dignity that a person deserves and especially your loved one, you know, this is your family. If you, if you are dealing with a loved one in your family. Family traditionally helps each other out, that's what we do. And so it is, it is easy to feel like you're not getting your fair share of life as a care partner if you're dealing with this and they're not actually contributing in any way. And one way Janna has been contributing with me is that she has her own things that she can do. And that lets, that gives me a little freedom to do what I want to do.
Janna: And I do what I thrive and did thrive before I lost my ability to read. I, I play flute pretty darn well, well professionally. And I'm realizing as I'm sitting here playing, I'll play a little bit later, maybe something like that. But you know, it keeps you going. If you just keep it going, there's a connection of how to get those words out there. And I feel like if I just sat still, I would be not speaking at all.
Larry: I think just by living long enough, a person deserves dignity and respect from listeners because, you know, aside from the fact that they have inherent worth and, you know, they deserve to be treated just by simply being human as an equal. I think it's about recognizing their value. And one of the things you can do to recognize the value is to know that person, come to know what they've done, what they've been involved in in their life, what advice they might have. But if you've lived with them for 50 years, like we've been together, I can remember how well I was taken care of by my wife and how many things she did for me at that time.
Janna: (Plays a flute riff) So, you might hear, oh, what's that?
Larry: Yeah, what was that?
Janna: Well, that's me playing. Well, how could you do that? How could you do that? Isn't that hard? Yes, real hard. But I practiced many years before I lost the ability to read. Okay, I can't read the words, but I can listen to the pitches and just go for it. And it gives a lot of, I think, confidence and vitality.
Larry: Because it is the thing that is your God-given talent. You had to work at it, but it came to you.
Janna: And I decided to keep it, too. Yeah. You all have things that you like to do, hobbies and stuff, but I was playing at a professional level. And it did great, but I was starting to lose it. I went, well, that's something I can hold on to ...be sure I memorize everything.
Larry: I talked to a friend today, and his wife has some dementia, and she does jigsaw puzzles. And she can still do them.
Janna: Wow.
Larry: Not everybody can still do that when they start any kind of decline, but she's doing that, and she takes walks. And while you can take walks alone, you and I usually take them together.
Janna: So, it could be something as simple as a jigsaw puzzle.
So, this is going to conclude our podcast today. And we like to say you're hearing from the horse's mouth. Why do we say that?
Janna: I don't know. I'm not a horse.
Larry: Well, we did decide, that was the cliche, that a lot of people don't hear from the actual Alzheimer's people. They're not putting out podcasts themselves.
Janna: They're invisible.
Larry: Yeah, they're invisible. And so, this is the one podcast where you can hear from the
Horse's mouth. And we're not doctors. We can't promise that you guys are going to get the same results that we do if you do exactly what we do, but we do have a lot of variety of advice that we give throughout our podcasts from Janna. And it's been paying off for her, and I think it can for you too.
Janna: And you guys that are out there, whatever things you know how to do, sing, play, keep your mouth going, sing out loud, keep things going.
If you fall back and don't express, pretty soon, you just sit there and hang your head down and feel like, well, there's nothing left. And you just got to go, “no, no, I'm not going to accept that.” Go for it.
Larry: Go for it. And even if that did happen, and if it does happen at some point, the dignity that the person deserves needs to be there as well... from all of us.
We're going to let you go. You guys take care. This is... Janna.
And Larry, signing off, Alzheimer's ThriversTM ... Check out our other podcasts. We hope to catch you on the next one. Thanks for listening.
Bye.
[Janna Plays Flute along with a guitar accompaniment]