Disorientation.

"Waking Up Confused and Scared? How to Handle Alzheimer’s Disorientation with Calm and Confidence.”

{Janna plays a flute intro prelude to the episode.}

Janna: Hi, I'm Janna, an Alzheimer's Thriver^TM. 

Larry: And this is her husband, Larry. I'm also thriving.

You'll be hearing words from the horse's mouth. 

[A little more flute playing]

Janna: Hey, I know what it feels like to wake up from a dead sleep and go, “what is going on? Who am I? Where am I?” Does that ever happen to you?

Larry: It's happened to me. 

Janna: Well, it happens to me a lot. And it used to put me in a panic. I wouldn't even know where I was. But now I realize that it's just a gracious moment in time that maybe God has given me as a gift to just wait, listen ...listen for perhaps his voice, perhaps his direction as to where we're going, and to just let the day unfold ...do some deep breathings - breathe in, hold it, let it out, and start to get oriented. 

Larry: Has this happened more in the morning or in the nap time? Or is this after pretty much after you wake up any time? 

Janna: Pretty much whenever I wake up and I've begun to get so that I'm used to it and I'm expecting it, so I don't panic about it. But I pretty much always feel like I want to panic about it. I just say, well, I can't do that. 

Larry: So, it sounds like you're waking up and going, “Where am I? What day is it? And that sort of thing? And then, “What room am I in?” 

Janna: That's right.

Larry: Yeah. So, how do you come around to ...okay, so you listen for God's voice, but then at what point do you begin to understand what day it is or know what day it is, or where you are?

Janna: It varies, but usually it's a few minutes, two, three minutes, and awhile back I would have panicked in that time, just feeling like, oh no I'm completely losing it. But now I realize, no, it's like when you're trying to solve something, and you have to sit and think about it and it takes time ...it's a hard math project, and it takes a lot of deep thinking. The thing is, it's not a deep math thing, it's not hard to do, it's just, it takes time for my brain to wake up, and I'll bet you that most people who have Alzheimer's or maybe just most people who are aging or who are just mellow people, they don't wake up right away. But that's a surprise to me because I used to wake up, jump up, get to it, hop up, go on, let's get going, and that's not me anymore. Now I'm learning to be at peace with it and not feel anxious about the lack of information that I'm getting. 

Larry: I do notice that I'll go down and get some coffee and I can hear you rustling up there but you're not getting out of bed. So, that's what you're doing. But does it help for me to get up in the morning and hear you wake up and come up and go, hey, today's Thursday, the 2nd of March, and blah, blah, blah, you're in your room, how would that be? 

Janna: You know, there's helping and there's empowering and there's, mmm, there must be another word for it, where you tell me everything to do, but what that does is teach me not to think, not to stop and think and figure it out. I don't want that, I want it to take the time, get oriented by myself, understand what's going on, and then get out of bed and feel like a whole souled woman.

Larry: So, at first, that was really off-putting for you to experience that. 

Janna: At first, and then the next day, yeah, and all the days.

Larry: Do you think it's gotten any bet... I mean, we talked before, we've talked about diet and exercise, and we've talked about, you know, the effects of some of the things that we ingest ...are you finding that that may have contributed in some way, I mean, in helping you kind of get some clarity, because it seems like you're getting a lot more clear. 

Janna: Well, I find that it seems like I need to warm up on any given task. 

Larry: It's not just waking up. 

Janna: No. And to the extent that, like, I used to do a lot of diving and swimming and all that, right? And I would never just go off the diving board, not see what was around it, or if there's somebody below and how deep it was or anything. I would think about it and be sure I was safe. But now, I really have to take time and think about where I am, what's happening, is this safe, and then proceed, there's no rush. 

Larry: You know, we've talked before about accepting some of the things that have happened that, regardless of what we do, they're a little bit out of our control. So, you’ve changed a lot in your actions and reactions and what kind of adjustment have you had to make to come to grips with this thing? 

Janna: Well, it's been a blessing, and one effect is that I've been empathetic, so much more empathetic than I used to be. I used to think quickly, respond quickly and be frustrated with people who were slow and thinking ...come on, let's get on with it. Now I'm that person who has to slow down and think about things, and I'm patient with it. So,  I carry that over for others and I think, well, maybe they need a little more listening time too. In the American culture, at least that I've seen, I'm sorry, buddy, but it's a man speaking, and he starts, if a woman's speaking, if a woman's, well, maybe I shouldn't even say that. 

Larry: Yeah, go ahead and say it.

Janna: I'm speaking and I'm putting my words together, and I'm saying it, and this is even before the Alzheimer's thing, I'm speaking a reasonable pace, but before I even finish saying my word, my loving husband gets in and starts finishing it. Maybe just like to say, “Oh, yeah, I get that.” On the other hand, to me, it says, “Oh, yeah, and you're not worth listening to.” 

Larry: So, you want to, when you wake up, you want to kind of figure things out yourself.

Speaking of the disorientation...

Janna: Give me some girth. Is that the word, the girth? 

Larry: A wide berth?

Janna: Give me a wide berth.

Larry: Speaking of that, though, you know, you hear about people, “Oh, so-and-so is lost and they're five foot seven, and they have gray hair, and they're wearing a black coat, and you know, if you see this person - go to... So, have you ever found yourself to be in a place where you're going, oh, my gosh, I don't know where I am? 

Janna: Yep, I have. 

Larry: Okay. and how did you, I mean, obviously, I do remember getting a phone call does help. And it does help that you have, you know, we share locations so that I can say, “Hey, where's Janna” on my iPhone and it shows me where you are. And so, I can kind of walk to it, get pretty dang close and then I can whistle, and you'll hear me within the range. It's not perfect. But I'm sure you panicked in those times. What would you suggest for people that are going to take a walk that maybe they have moderate Alzheimer's?

Janna: Well, it's interesting that you say, “you probably panicked.” I kind of panicked right at first, but in fact, I don't normally panic, and I think that's because there's that quadruplet-thing. I had four babes all at the same time and I couldn't panic. I had to be ...have my head on, and that is a good thing for my life now because I've learned to wait, stop, what do they call it? Analyze, analyze the situation, give it a thought, a split second, then proceed. Don't be quick to, there's, what is it ? Quick-slow-slow? 

Larry: Oh, yeah. That quick-slow-slow thing. Yeah. So, quick to listen, slow to speak and slow to get angry. Yeah, that's from James 1, I think 19, 

Janna: In the Bible. And if we all did that boy, there would be less conflict, wouldn't there? 

Larry: So. are there some places that you no longer go, or no longer walk to? Are there benchmarks along the way that you can know where you are if you walk a little bit? 

Janna: Yeah. One thing that I find is key is, well, first of all, because I didn't do it at the beginning, I’d get lost a lot. I’d just walk out the door and go, boom, without thinking about where I’m going, how many steps away it is and so forth. Now I give it a stop, look left, look right, think of what's around the corner and walk quite purposely to a place that's familiar to me. And I will ask my Siri or whoever along the way to get reassurance that I'm in the right place. But it just means, you have to study, I have to study each day when I walk out the door, I stand there and I don't just, boom, go, let's go, and run. I look at what's around me, my bearings, and try and make sense of the whole thing until I'm settled, my heart is settled.

Larry: Now this brings up another point and maybe I should say we're going to do a podcast on when to stop driving. That's always a big issue, but part of it is knowing and being oriented towards what exit is this, and what exit is that, and how to follow directions, and that sort of thing. And I think at the beginning of this diagnosis and when we realized something was going on, it was real scary to think about that. So, we'll be doing one on that and so we'll be looking forward to that one too in the future. But back to this disorientation of walking, do you recommend long walks, or do you recommend short walks maybe overlapping ...do two walks at the same time? 

Janna: I think short walks and again and again and again repeatedly. It's interesting that I find that when I locate an area, I have to locate - I haven't counted it out really - but I have to locate that area maybe even ten times, even if it's just a little way away, ten times or more before I really have it in my wheelhouse and can just go, “okay, here I go, I'm walking, I know where I'm going.” It's like a process to study through each time, each time it's a new adventure. And I've discovered that when I hear a story, I have to gnaw on it and think about it for a while. if I'm gathering information and trying to remember it, I have to gather it and study it in my mind and wait time. I think that's the Alzheimer's, but it's common. It's the norm that I have to rehearse, rehearse, rehearse, rehearse. And now rather than think, oh, don't get lost, don't get lost, I think, let me study where I am. Let me feel what the bushes feel like on my hand as I'm walking through. Let me see what color this is by this house, how many steps away it is. And let me just walk a few little bits and come back until I get sure with that and then go a little bit further and a little bit further. 

Larry: Okay. I think being oriented and being disoriented and that sort of thing is just something that happens and it's part of the process, right? And so, I think people, when it first happens to them, I'm sure they don't feel very smart and like they're losing it. What about you? 

Janna: Oh, yeah. It's hard to take. But it's good to acknowledge it in an adult way and take responsibility, than to make a mess of it. For instance, I don't drive anymore. And I know that there are people who have Alzheimer's that do drive. I'm not going to speak to that, but I will say that from my experience, I've decided, and I've promised my family I will never drive again. I was always a good driver ...brought the kids all over the place, went over to Canada and all that - and then one day I'm driving in a familiar area, and I begin to make a corner and go across. I couldn't tell you exactly where it is, but I guess I didn't notice something. Something went haywire. 

Larry: I think I'm going to interrupt you here because we're going to do this whole podcast on that real soon. That's probably our next podcast, so be looking for that.

Janna: You'll wonder. 

Larry: Yeah.

Janna: Just make them wonder.

Larry: I mean, how you came around to that ...and it's a huge decision, and it's a very difficult one. It's probably the one of the biggest ones we had to make. But we'll talk about that on our next one and I think it gives people, I know it does me, it gives people hope and encouragement to know that there others going through this. Some are accepting certain things and working on other things. But not being down to the point where you are broken. You bend because you are flexible, but you don’t break.

Janna: As long as we are not in denial. And that “denial” is very popular, but it gets you nowhere.

So, we’ll leave you hanging. Just hold on for the next part. It’ll have you hanging for sure. In the meantime, 

Larry: I’m gonna be hanging? I want to hear it now.

Janna: No, its not gonna happen. You’re gonna have to wait. So, this is Janna, and Alzheimer Thriver^TM signing off . You’ve been hearing words from the horse’s mouth.

Larry: And if you’re the horse’s mouth, then what am I...?

Links related to Disorientastion:

• Spatial Disorientation & Getting Lost

https://www.frontiersin.org/journals/aging-neuroscience/articles/10.3389/fnagi.2020.550514/full

• GPS Tracking Study of Outdoor Movement

https://aging.jmir.org/2022/2/e28222

• Disorientation upon waking in Alzheimer’s is rooted in disrupted sleep-wake cycles, delayed cognitive processing, sensory factors, and sometimes physical causes. Helping involves setting up familiar, gradual morning cues: lighting, digital clocks, comforting reminders, and slow transitions. Over time, these steps can ease confusion and make mornings calmer.

If it's causing distress or you notice additional symptoms (like persistent dizziness), it's wise to discuss this with a healthcare provider to rule out other issues or consider supportive treatments.