“When help is not help for the Alzheimer's Thriver” 

[Janna Plays Flute Intro] 

Janna: Good day, it's Janna and Alzheimer's Thriver. Today, I'd like to talk about when help is not help. 

Larry: And this is her husband, Larry. 

Janna: And he can attest to that. 

Larry: So, my initial reaction to this whole thing was to take control. 

Janna: Rescue, rescue. 

Larry: Do everything for her ...jump up there and help. 

Janna: I don't always hate that. 

Larry: Say for instance, when you wanted me to find something. 

Janna: Ha, Ha, Ha. 

Larry: ...or I wanted you to find something because you don't know where it is. And so, anyways, why don't you talk about how you kind of trained me to not be defensive, and not just take over and take charge, like a bull in a china closet, which is pretty much my M.O. Go ahead. 

Janna: I'm trying to find that jacket that I had the other day. “It's right there.” Right where? He says it louder, “Right there!” (...points) So, I walk around the room. I just can’t. There's so many things in there. So many things to put my face on, put my eye on. And somehow, I walk around and I'm sure I'm passing the object I'm looking for, but it doesn't present itself. 

So, I just take a long, well, first of all, sometimes I cuss, let's be honest. But I take a long breath and then do I keep looking? Not so much. I just sit there and wait. And sometimes it comes to me. More often, Larry has to give me a hint, wouldn't you agree? 

Larry: Yeah, and I say, “Okay, it's next to the chair on the right, where we keep our pens when we're watching TV.” ...And that's too many instructions. 

Janna: T.M.I. 

Larry: So, I guess we should say that we should do one step at a time. We've got to figure out a different way to approach it. And so, sometimes it might be something where you need to do something you used to do, and yet, you can't do it anymore. And so, then I have to jump in there and maybe make some suggestions. But then you say, “It's not helpful, 

let me do it myself.” 

Janna: As an example, I realize I can't do all the things Larry can do, certainly. But there are some things I feel like I'm capable of doing, for instance, making the bed. But more and more it is harder for me to get it exactly even. And I think, okay, these three cute little pillows, they're decorative, they're cute. And there's three of them in each section. And I have always had to be very even-steven. More and more, I look back, ...I pull back ...when I'm done, and I go, wait a minute. This one's going up, and this one's going down. Let me get it even again. And it's hard for me to do, but I still want to try to do it. 

Larry: And then I come in. 

Janna: And he makes it, quote unquote, “right.” Which makes me feel like a loser. 

Larry: And that's where I need to back off and just let it be ...let it be however you do it and live with it, you know. 

Janna: How many guys have to have their pillows just right? 

Larry: I know. I'm like, how did I get that way? 

Janna: We're both a little bit anal, right? Wouldn’t you say? (Janna whispers) ...he's much more so. It is very helpful for me to have a rhythm of the day. Perhaps somebody would like to come in and say, well, I think you should do this first. And do that second and all that. But no, I don't have my own ownership of it. Even if I'm not as capable anymore of remembering. 

   For instance, when I get up and land bed, I don't jump right up. I lay down for a while and I get my orientation. Where is this item? Where is that item? What happened yesterday? Oh, shoot. I can't remember what happened yesterday. Did we play tennis? Did I play my flute? What order did this go in? Wait a minute. Is this Monday, Tuesday, Wednesday, Thursday? So, I have to sit there and go, okay. Yesterday this... and then I go, Sunday, Monday, Tuesday. Okay. And then we do that in the middle and then front and go over it again and again, and it starts to present itself to me ...the memory of what happened yesterday. But this is a developed skill. When it first started happening, I went, oh, crud. I can't even think of what I did yesterday or where I was. Now I know. I anticipate that feeling is going to come over me. So, I lay there and just be patient ...frequently speak to my God and say, thank you, Jesus. Thank you that you're there. I trust that you're there and help me just be patient and get the inspiration I need. So, I’d like to go through all my children’s and my grandchildren's names every morning. 

   I'm kind of stubborn, and well, Larry would be willing, for instance, to lay my clothes out or answer any questions I want. I try to respect the fact that he might have already been thinking of something else when I was not in bed and he's up doing something. Let me give him that credit. And I try to figure out what day it is. And frankly, I don't read. I don't read anymore. I lost my ability to read with a TBI traumatic brain injury. That's a different thing. 

So, I don't read. I write, but when you look at it, I don't read it. (Addressing Larry) You can read it. 

   So, get those routines going though, and think ...okay, Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday, and go to which one am I in this day. Oh, shoot. What was it? Oh, shoot. I can't forget. I can't remember. What is it? What is it? So, then I just say to myself, (Addressing google or Siri) “Hey, (you know who) ...what day is it? 

Larry: So now for the people who don't have a spouse or a loved one that's living with them, then routines would be something you'd want but that you may not be able to do or remember. But if you don't have anyone, then you're probably going to, these people are, folks are going to probably need someone. Alzheimer's.org has suggestions there. And there's different county helpers that can come in and individual and private helpers if you haven't looked into that yet. And there's support groups. We're involved in a support group where I'm with folks that are helping, and Janna is with folks that are having Alzheimer's and it really helps to talk out things and to run things by people at different levels of Alzheimer's. 

But if you can get somebody to help and come in, then you have to train them like she's trained me ...to be patient, to be kind, to be loving, ...not think of something as an argument, and to be able to deal with certain emotions. Maybe that brings us kind of around to ...how am I supposed to deal with your emotional swings, because you definitely get sad. 

(Sarcastically) No... 

Larry: And depressed. And then you get up and you're like, all ready to go again. So how am I supposed to react? 

Janna: (Jokingly) Just accept that I totally deny it. No. You just got to say, I can't own this. I can try and help. I can try and be empathetic. Larry has gotten so much more empathetic. I mean, a guy, strong guy who's athletic and everything. You know, he might not have those nuances of being empathetic because he doesn't feel ... he feels strong ... he feels confident. He's confident wherever he goes. I don't get that. But how can he help me? Don't say, “Oh, don't be so quiet ...don't be nervous ...don't be afraid. ...don't be sad.” Sad is sad. 

   I got to remember for myself my own advice. Okay. I'm sad. Oh, crap. Excuse me, Lord. I'm to the point where I'm crying now. All right. Let me put on my smile. Okay. Smile. Yeah. Think about all your blessings ...and I have so many blessings. Turn it around. Maybe you could change your narrative. Well, what does that mean? It means, okay, you feel that way? What can we do about it? Let's stick it from a different perspective. 

Larry: So, I remember the first time that you got really down. I was just, like you say, I was trying to talk to you out of it. No, you shouldn't feel that way ...no, that's not true. You know, you'd say something like, “I have no significance anymore. “I have no purpose anymore ...I'm really like, I'm not a person.” And I would say, “No, that's not true. You mean a lot to your family ...you mean a lot to me.” And if it was just me, maybe that would be enough. But apparently, it's not. And so, then I would get in an argument with you about it. And the next thing you know, I'm upset. You're crying. So, it really is on me to make some kind of adjustment. And we're both making adjustments. But yeah, it's up to me to make an adjustment knowing that this is going to pass. 

Janna: You know, I'd almost consider that it's not your job to make the adjustment. It's everybody's job. But it's for you to realize that, okay, dang, I've been the strong guy. 

I know how to do things and get things. But maybe I need to lighten up a little bit and just take it easy. There's no bad guys and good guys ...we just need to be there for each other. There's going to be things that I could do, things that I can't do. Or don't think I can do. But I'll let you know when I need help. And that doesn't mean you can never offer help. You know, all right, you can kind of listen for the messages. But don't come out and be the hero right away. We want to believe that we can do these things ourselves. 

In conclusion, I'm looking forward to the next time we get together. And I'm saying I'm an Alzheimer's thriver. And I hope that at some point you'll feel like you are too. Let's go get him, girls, boys. We can do this as a team. All right? This is Janna, signing off. Until next time.