Episode Transcript
[00:00:00] Foreign welcome back to Louie Body and Mindful Caregiving. I'm Crystal Jakowski and I'm glad that you're here today. I want to talk about the projections of our loved ones and the assumptions that we make about that. But I always do self care first. So what have I done for self care? I took a little time for me and went away for a weekend which was absolutely fabulous.
[00:00:32] I got to breathe and made sure that my mom was well taken care of, had plenty of people visiting her, around her, supporting her, so that I could go and do my thing, which was wonderful. And I'm super grateful for all the people that I have pulled into my corner and those people that keep showing up. So thank you, thank you, thank you to all of them.
[00:00:55] Projections and assumptions. This actually this topic came from my spending time with other loved ones. And I understood better what mom was doing and what was going on, but it came through other loved ones.
[00:01:13] You know, sometimes we hang out with family or friends and one person might start kind of picking on another person, needling them a little bit. And teasing is a popular word. I'm just teasing you. I'm just picking on you.
[00:01:31] There's nothing mean about it, but the person being picked on may not like that. They may feel like it's actually kind of mean and, and hurtful and not cool.
[00:01:43] I learned through two completely separate experiences about how oftentimes this kind of energy is because somebody has an emotion going on for them and they don't know how to express it, they don't know how to deal with it, so it comes out sideways. They poke fun at somebody, they kind of harass you, pick on you a little bit because they don't know how else to navigate what it is that they're feeling and what it is that they're thinking.
[00:02:18] I had people a couple times, different scenarios where they were picking on me. And I stopped and I recognized, whew, that person has a lot of emotion.
[00:02:28] And so I verbalized. I don't like this. I don't think it's very nice. I don't think it's very friendly. I'd like it to stop.
[00:02:36] And it would stop for a short period of time and then they'd start up again because they didn't know how to deal with whatever emotion they were feeling, whether they needed to talk to me and tell me what was going on for them or I don't know. But. But with my mom, there are plenty of times where my mom will say something snarky at me and I notice I say at me, not to me, because it's very much like she's picking on me and she's frustrated with me, and so I assume that she's irritated with me. But what I've learned over these couple of experiences and looking at my mom is that she is literally projecting. She is expressing sadness, she is expressing emotion in the only way that she knows how. In the past, I've gotten very frustrated with this and very upset because I don't like being put on a guilt trip. I don't like feeling like I'm failing you in some way, shape or form.
[00:03:34] I don't like the way that I can't talk back to you about it. I can't discuss it with you because you don't understand. Your brain is not working like a normal purple person's brain. And so if I was to say something, you're probably meaning you, meaning my mom, probably going to shut down and stop talking to me. And if you don't trust me and stop talking to me, then how am I going to take care of you and make sure that all of your needs are met? Like so many things and it's just this huge cauldron of energy and emotion going on.
[00:04:12] My mom says to me, you're so busy. You're so busy.
[00:04:19] And for a while, every time she said that, I just felt like it was a jab. It was a, you're not around.
[00:04:27] Now I realize it's, I'm lonely and I want more time with you.
[00:04:34] But you're busy. You have a life that you're living. She's very accurate. I have a life that I'm living, and that is accurate. She's wishing that she could be busy.
[00:04:48] You're so busy. You're doing so many things. She wishes that she could be. She wishes she could be active. She wishes she could go out of the house and go to the store or go to the restaurant, go get a burger, go for a drive, you're so busy. When she says that to me is actually a I wish I could do something, I wish I could spend time with you. It's a completely different realm, and it's all in how I choose to look at it. If I assume that she's angry or upset with me, that's the part of her vision, that's the part of her statement that I'm going to see.
[00:05:33] I go out there and I sit down and I'll chit chat with her and see how things are going. And she'll say something like, I'm really lonely.
[00:05:43] Oh, okay. So what should we do about that now? I happen to know that she has been out of her house every day. She has been with people, hanging out with people every day. She's got more social time right now than she ever has because she's always been a bit of a hermit.
[00:06:05] So she says, I'm lonely. And I think in my brain there's this part of me that goes, but you have so many people coming by and saying hi. You've been going out for lunch two and three times a week with different people that are coming by, and I'm taking you to the store. You're so lonely.
[00:06:25] She's lonely because she's afraid.
[00:06:28] She knows that she's not getting better. She's unsteady, she's uncertain. She really kind of wants someone with her all the time because then she doesn't have to think about the fact that she's declining or be insecure. There would be somebody there to take care of making lunch or all the other things. I'm so lonely. There are other underlying issues beneath her statements.
[00:06:58] People have talked about their loved ones being in a home, and their loved ones say, I want to go home.
[00:07:07] What does home mean to them? They want to feel safe. They want to feel familiar. They want to be with somebody that they love because they need that extra connection. They're feeling lonely. Even though they're in a place that has so many people and so many opportunities for them to connect with other people. They're lacking the familiar. But you know what? Nothing is familiar anymore.
[00:07:35] Even their own home is going to be unfamiliar because they are losing their autonomy. They're losing their ability to function and be what they used to be.
[00:07:48] It's not familiar to lose your mind. It's not familiar to forget who's visiting you when it's your daughter that you've had for 40, 50 years. You know it's not familiar when you can't pick something up because your hands are shaking so bad.
[00:08:06] When you start losing the ability to go to the bathroom or control your bowels, it's not familiar. Nothing is familiar. I want to go home can be something like, I really want to go back to the way things were.
[00:08:22] You can't ever go back to the way things were. So how do you shift and change that? Because the way things were, sadly, are gone.
[00:08:34] Your ability to function by yourself, your ability to drive your car, your ability to go to the grocery store, to write a letter, to make a phone call, everything is different. Everything has changed.
[00:08:53] My mom projects her feelings onto me because she doesn't know how to express them or verbalize them. Part of Lewy body dementia is just the inability to navigate their emotions in general. So my mom is always anxious. Everything is anxiety. And when I'm sitting with her and I see that her hands are shaking more and more and more, then I can say, hey, mom, can we. Can we just take a couple nice, deep breaths and just enjoy this moment together?
[00:09:30] Look at those nice flowers that are right there on your. On your counter. Let's just.
[00:09:36] Can you smell them?
[00:09:39] And when I bring her present to the moment, her hands stop shaking as much, her head stops shaking as much. Because now we're right here, right now. We're not stressing about tomorrow. We're not stressing about somebody coming and visiting. We're not stressing about the doctor's appointment. We're not talking. We're not stressing about all of the people in the wildfires and how they're homeless and what about the pets? We're not stressing about things that are world.
[00:10:08] From the news that she has no control over, no contact with whatsoever, but she's stressing about it. Hey, mom, can we turn on some nice, soothing music and just enjoy that for a little bit? Maybe I turn something on that we both know this words to. And so then we end up singing together and enjoying that moment.
[00:10:31] She doesn't know how to verbalize her needs.
[00:10:35] I have to guess at them.
[00:10:37] Sometimes that can be super frustrating. And sometimes it's a little easier to go, oh, I got it. If I pause and look at her statement, you're so busy.
[00:10:50] What does that mean right now?
[00:10:53] Is she asking for a little bit of time with me?
[00:10:57] Is she wishing that she could get out of the house?
[00:11:01] Is she looking for something to do that is not in her daily MO because she does her games in the morning on her computer, and then she goes to her chair and she listens to the radio or she watches TV all day long.
[00:11:20] That's what she does.
[00:11:22] She gets up to go to the bathroom. She gets up to make some lunch. She has visitors that come by. Sometimes she'll get up and move around or go to lunch with them, but she's largely in that chair most of the time. So you're so busy. Does that mean you want a change? You want to do something different?
[00:11:41] I'm lonely. Okay, so what can we do about that? How can we change that? Do you want to come spend some time? Do you want to. You know, how can we help taking a moment to step back and look at what your loved one is dealing with, remembering that they don't have a normal brain. They do not have the ability to work through their emotions and their thoughts and their memories to truly articulate to us their wants, their needs, their fears, their desires.
[00:12:11] They just know that things are not the same.
[00:12:15] Take a breath.
[00:12:18] It's okay to be frustrated. It's okay to get angry. It's okay to be upset and not know what to do and how to deal with it.
[00:12:26] We all get angry and upset, we all react, we all struggle. And that's okay.
[00:12:32] This is really hard.
[00:12:34] Anybody going through it is going to say, yeah, it's really hard and it's okay. We're not going to fault you. Every one of us loses our temper sometimes. Sometimes we actually yell at our loved one or get snippety with them.
[00:12:50] It's okay. We know that we love them and we are still in this to help them. And we're all in this together, supporting and loving each other, knowing that we're not alone and that there are so many people out there dealing with the same stupid, frustrating disease. This long goodbye that is so heartbreaking.
[00:13:10] You've got this. Take a breath, do some self care and I hope to see you next time here on Lewy Body and mindful caregiving. Until then, take care.
