Episode Transcript
[00:00:10] Welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Jowski and I'm glad that you're here. I appreciate you joining me and being on my journey with me. I hope that what I share and and say with you is really beneficial and that you're able to take it and apply it in your own way. Today I want to talk about the emotions that Louie Body messes with.
[00:00:36] But before I do that, we always talk about self care. So what have I done for self care? I've just taken more downtime, more time to relax and regenerate and recoup. I'm still functioning and I'm still doing what I need to do and meeting with clients and operating, but I'm also just creating more space, more space to breathe, more space to be okay. More space to be with myself instead of feeding everybody else around me.
[00:01:11] And that's a big deal. So.
[00:01:14] Emotions on Lewy Body.
[00:01:17] One of the hallmarks of Lewy Body is a serious challenge. Regulating your emotions, regulating what's going on for you.
[00:01:35] In many ways, my mom is like a little kid, and sometimes it's fun and it makes me laugh and it's just so silly. And sometimes it's so very frustrating because I want to soothe and I want to make things better, but she just can't get there. Lewy Body makes it really difficult. It messes with that part of the brain where you can regulate all of your emotions. So maybe your loved one is super angry and they just don't know how to stop that. And there is no way that you are going to calm them down or talk them out of it. They just need to get through that anger so that they can move on to the next whatever.
[00:02:21] It's very much like a little kid, very much a regression in life. Those little ones that we bring up, they come into this world and they do not know what to do with all these emotions.
[00:02:35] When they're happy, they are super happy and they're bouncing around and they're cute and they're adorable, and they see wonder in absolutely everything. And you love that. And it's easy to deal with. Not a big deal. And some people will be like that. They'll just be happy. It's all good.
[00:02:53] But more often than not, there are going to be other emotions that our loved ones are dealing with, and they do not know how to deal with them. They do not know how to move through them so they can get back to a peaceful state. And that's where we come in to help My mom is extremely anxious. Anxiety is her constant companion.
[00:03:17] I talked about sleep last week and how it is so important and how with Lewy Body, it can be so messed up.
[00:03:28] Think about how when you don't sleep well one night and the next day, it's a little bit more difficult to manage all of your emotions, all of your stress. You might cry a little bit easier. You might snap at people a little bit faster.
[00:03:44] Everything that's hard and difficult is just harder and more difficult because you're tired.
[00:03:50] When you are someone with Lewy Body, this is going to be magnified.
[00:03:56] Recognizing that, understanding that right here, right now, being able to say, oh, I get it. And it's not them.
[00:04:05] It's their brain is not working. It is not them. It is the disease. Absolutely, 100%. Understanding it from that perspective and that point of view makes it a little bit easier to have a little bit more compassion. When they are struggling, you find ways to calm them down, to soothe them. My mom gets anxious when somebody is coming to her house to spend time with her, but she really wants somebody there because she doesn't want to be alone. And when she's alone, she's sad and feels isolated because nobody's there, so she gets sadder. And then she wants to cry, and she'll think about calling somebody so that then maybe she won't cry, but then she feels guilty calling somebody, so she just sits there and she's sad, and she doesn't know how to regulate, even though somebody was there five minutes ago.
[00:04:58] Now she's sad.
[00:05:01] So we have her on medication to try to help with the anxiety, and that's made it so that she doesn't want to cry all the time. But we're at the top edge of that medication, and she's still sad, and she still struggles. Now she doesn't want to cry all the time. They're gone, and then she's sad that they're gone. And then eventually she comes up and she's back to normal life, just like any one of us has that same thing. We are so happy when somebody that we love comes and visits.
[00:05:35] We might be a little nervous before they come, want to clean up the house a little bit, whatever it is, and then they're there, and you love it. Like, you have to settle in because you're a little anxious and you want to share everything that's happened, and then they leave, and you might be a little sad that they leave. Well, guess what? Your Lewy Body, your loved one, goes through that exact same arc. But it is magnified. It is magnified to what we might think are unreasonable sizes and scales. But to them, that's just their daily life. Oh, now I'm alone. Nobody's here. I'm really sad that I'm so alone.
[00:06:18] An hour later, I'm, okay, I'm gonna turn on mash, or I'm gonna go play a game, or I'm gonna read a book.
[00:06:29] I'm gonna do a puzzle. These are things my mom would do. Somebody leaves and she is sad, and then she'll turn on the TV or she'll go make something to eat. And when she changes activities, then she's not as sad that she's alone, but it's that arc that she has to go through.
[00:06:53] Someone might be perfectly normal, and then somebody says something or maybe bumps them, and then all of a sudden they're angry and they are pissed off, and they don't know how to deal with that anger. They just are yelling and screaming. They might end up throwing things. And how do you help them calm down and come out of being angry and soothe them to where they can come back to an it's okay kind of space? You know, your loved one, you will have to work through that.
[00:07:24] They don't have the ability to stop.
[00:07:28] They don't have the ability to just magically turn it off. If they want to cry, they're going to cry you. And I might think, oh, gosh, I'm really sad and I want to cry. But this is not the place for me to cry. So I'm just going to hold onto it. I'm going to bottle it until I get home. And when I get home, I'll just let it all out.
[00:07:46] That's not them. They think I'm sad, and I want to cry. They're just going to cry. And that might worry some people, because you are in the store with a loved one who suddenly just wants to cry. And they're 50, 60, 70, 80, 90 years old. Whatever age they are, they're a grown adult, and they're crying because they're sad in the store.
[00:08:10] They can't regulate that. Their brains don't function like a normal brain. And we are dealing with a regression to where they are going back to childhood.
[00:08:23] So how can you help soothe your loved one knowing that these are going to come up? Being aware of the fact that this emotional roller coaster is going to happen is supremely helpful. Because if I'm aware, okay, my mom is going to get anxious. What can I do to make sure that she's less anxious. Well, if I know somebody's coming over, I might go over and sit down and just chit chat with her for a minute and then that person shows up while we're chit chatting and she's less anxious because I was right there.
[00:09:00] Or maybe I know that somebody's coming over and I'm out and about or I'm working, I'm doing a job, whatever. And I know that that person probably left and I'll just text her or I'll give her a call, hey mom, I'm just calling to check in, see how things are doing. How did it go? Did you have fun? What did you do? And then she's like, oh, she's good. Because she was able to process that emotion of being sad that somebody's not there and now she's back to being I'm going to watch some MacGyver or I'm going to do this. Okay, great. Helping my mom, knowing that she's going to have those ups and downs and those challenges means that I can try to help smooth the waves just a little bit. Instead of a ten foot tsunami, a twenty foot tsunami, maybe they're just the two foot ocean waves or four foot ocean waves that still knock you sideways, but they're a little bit more manageable.
[00:10:04] It does mean that you have to have forethought. It does mean that you have to be actively engaged in that.
[00:10:10] And yes, that can be draining. And that's where we go back to self care and say, okay, what are you doing for yourself? Because you're doing all of this and you're soothing your loved ones emotions. So what are you doing for your own emotions? How are you helping yourself out in this vein? How are you making sure that you're okay?
[00:10:28] What can you do for you?
[00:10:34] Emotions are challenging as they are in their very nature. It can be overwhelming.
[00:10:42] So taking the time to look at it ahead of time, be prepared for the possibilities, see what might come up, means that when they do come up, it might be a little bit easier.
[00:10:59] Thank you for listening.
[00:11:01] I hope this helped and I hope you come back next week for Lewy Body and mindful caregiving. Until then, take care.
