Episode Transcript
[00:00:10] Hello, and welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski, your host, and I appreciate you coming back and choosing to continue along this journey with me of caregiving with my mom. Today I want to talk about how we are going to be triggered by our loved ones and by the experience. But before I talk about that, I want to talk about self care. And what I did for self care is I allowed myself to just withdraw. I allowed myself to pull back, and instead of spending time with all of these other people and continue putting myself out there, I said, nope, I'm. I'm just gonna hold back. And I have a cozy little corner in my house that's kind of under the stairs, so it's a little darker. And I like to curl up there and maybe read a book or watch a tv show or do a puzzle, but I just like that more subdued space. So I allowed myself to withdraw, which was fabulous, considering I had been triggered, and that's why I want to talk about that today. So today I have to school myself because there are so.
[00:01:25] There are so many things that I could refer to in this podcast episode. There's so many examples I could give you, and I could.
[00:01:39] I would be in this ranting, raving, frustrated space, just reliving all of the times that I have been triggered by my mom during this experience.
[00:01:51] And so I really consciously want to put out there that instead of that negative, weighty energy, I would like to pull in a more positive, hopeful, learning energy for this episode with your loved one. You have history.
[00:02:16] You've had fights. You've made up. You may live together. You may not live together, but you definitely have history and experiences with them. And some of those memories are not good and are upsetting, and they haven't fully healed, but they're still there. Or maybe you think that they've been healed, but then something happens and you're upset again.
[00:02:46] My mom, through my high school years, through my youth, and even as I've been an adult, she is the queen of guilt trips for me now. I don't know that she's this way with many of my other siblings. I know that she's definitely this way with at least one of them. And for a short time, that kind of seemed to finally resolve whether that's because we've brought it up to her and said, we don't appreciate that or we've been able to navigate through it.
[00:03:24] When I was younger, I would feel guilty because the guilt trip was doing its intended purposes, and I would feel like I was a horrible person because my mom was so sad.
[00:03:37] As an adult, I learned how to roll my eyes and just be like, whatever, it's just her again and letting it go.
[00:03:46] But my mom has kind of returned to this world of guilt trips, and I don't like it.
[00:03:55] I don't like it at all because I know that I am doing my absolute best at taking care of her. I. And so when she gives me one of these guilt trips, my first reaction could be, I've got to figure out how to give more to her or do more for her. I need to drop everything that I'm doing so that I can go take care of that.
[00:04:24] I can really let it sink in and start to feel like crap because I am not fulfilling my mom's needs and expectations.
[00:04:33] But the reality is that she's using that as a way to control me. If she can guilt trip me into it, she doesn't have to ask me to do it. But in the same aspect, her brain isn't working. She does not have a normal brain. She is reverting to a way that she just knows how to function. Whether she did guilt trips or hints and nudges or, hey, you know, it might be nice if we went out to dinner sometime. It would be nice to have a steak, but I can't drive those old ones that she used to do. They're not guilt trips. They're just passive comments trying to get me to pick up. And I used to say, oh, are you asking me to take you to dinner? And she would say, yeah, I'd like to go to dinner, please. Oh, well, that's different. We can work with that.
[00:05:26] Sometimes that works now with her, and sometimes that makes her a little cranky. So I have to navigate that.
[00:05:33] But we had gotten to this good space where she started to ask for things instead of the passive nudges, but she shifted to the, well, you don't feel like it's important enough to spend time with me, so I guess we're just never going to go to dinner.
[00:05:56] Well, I'm gonna let that sit, because that comment is her. It is her nature. It is her way of thinking. She is maybe not intending to be mean and spiteful to me, and yet that's what she says. So it's in my realm to decide how I'm going to take those kinds of comments, or she'll make a comment like, oh, I did not like my mom. I could not.
[00:06:34] I could not be in the space that you are and take care of her like, you're taking care of me. Really? Yeah. She would drive me nuts.
[00:06:43] Okay, I got you.
[00:06:45] I was a much better mom than my mom was.
[00:06:50] Okay, do you want to say any more about that? And she'll go off on how her mom didn't do this and her mom didn't do that. And as I'm listening to her, I'm like, mom, I didn't say it, but my brain is thinking, you did the same thing to me.
[00:07:12] You did that to me, too.
[00:07:16] You did that to me, too. And I was really upset about the way that you treated me. So I was triggered and I was upset, and I was frustrated because I was like, how can you think that you were so amazing when I have a completely different experience than that and I'm angry about it and I'm frustrated about it, but I can't say anything about it because her brain's not normal and it's just going to cause upset and conflict, which means that against everything that I know to be true, I simply have to say something like, I'm glad you feel like you did such a good job.
[00:07:59] Notice I didn't agree with her.
[00:08:03] I'm glad you feel like you did such a good job.
[00:08:06] We might be out and about, and I make one comment and she makes another, but hers is a huge jab, and I immediately want to snap back at her because I'm annoyed by what she just said.
[00:08:21] But if I snap back at her about that, what does it do to our relationship?
[00:08:29] Lewy body, by its nature, is one of those diseases, is a disease where the person starts to distrust everyone.
[00:08:38] There is a suspicion about you.
[00:08:44] They're caregivers. Anybody who comes to visit the house, it might be, oh, you stole something from me, or, I don't trust you, and I don't want to get in the car with you or a myriad of things, but it comes down to distrust.
[00:09:00] So do I want to snap at my mom and be angry and upset with her for the world that she's living in and the way that I don't agree with it, and you just referenced something that you did in my childhood that really hurt and made me mad.
[00:09:20] Do I want to react to that and snap back at her, knowing that that will cause additional distrust, a breakdown in the relationship right here and right now, which will make the future even more difficult because she doesn't like me and doesn't trust me. And why doesn't she like me and trust me?
[00:09:46] Because I yelled at her.
[00:09:48] Because I snapped at her. Because of one of her comments that she believed was 100% true.
[00:09:58] They have their own world going on. They have their own thoughts. They have their own beliefs. They have created a reality in all of this time that they have sitting there.
[00:10:13] That is their new reality. Now, whether or not that's true for their past and for their other loved ones, that is their truth.
[00:10:25] I heard this story.
[00:10:27] True story. I'm going to leave names out of it.
[00:10:31] This person, who has a dementia type disease, was telling his family about he, how he has gone to so many baseball games of this particular team.
[00:10:45] Yeah, I love the park and it's just amazing. And we have gone so many times and we need to go again.
[00:10:51] Their family knows this person has never been to that ballpark, never been to the ballpark, but he insists that he's been there and he insists that they're all going together soon.
[00:11:06] Now the family's irritated and frustrated. They're a little bit triggered, they're a little bit annoyed with the insistence that this needs to happen and that this is going on, but they can't get mad at him because this is belief. So how do you make that happen?
[00:11:22] Is there another sports team that you can go take him to or do you need to create some other environment so that he can try it out? Do you hope that he'll forget? But it's a day after day after day obsession that, yes, I've been there, I've gone so many times and we are going again.
[00:11:46] They don't connect.
[00:11:50] They don't have a normal brain. They cannot think through it with logic. They cannot be convinced otherwise. And why would you want to?
[00:12:05] In his mind, he has seen these baseball games so many times and they're positive, happy experiences and memories. Why would you want to take that positive memory away from him, even though it's made up?
[00:12:26] But it can be triggering and upsetting for you because you never got to go. And he was maybe the reason you didn't get to go. He was the one that said, we don't have the money to go, so we're not going to. And so now you're angry and upset because what the hell?
[00:12:44] Why are you doing this?
[00:12:47] They don't have reasoning. They don't have awareness.
[00:12:54] When I am triggered by my mom, when she says something that really upsets me from my childhood, she'll needle me.
[00:13:07] My parents got divorced when I was eight and at eleven years old, I chose to go live with my father. And there's a whole myriad of junk that goes along with that, that I am not going to share with you guys. But every now and then she'll needle me. You left me, you abandoned me.
[00:13:29] I can't believe that you went away, okay. I was eleven years old and I was doing what I thought was best for me at that time because family life wasn't so great with you.
[00:13:55] So now she'll use that to needle me.
[00:14:01] And I can be angry and be like, screw you, who do you think you are? And distance myself from her. But if I do that, then who's going to take care of her?
[00:14:14] Who's going to be there to help her through the next issue with medications or health decline?
[00:14:24] She's already set up with these fabulous doctors here. She's already got a really good foundation. We have the visitors, we have the support that we kind of need right now. So she's in the best place possible.
[00:14:38] Man, it's hard when they needle you and they push those buttons and they trigger you with those experiences and memories and things that you've gone through that hurt so badly and you wanted to leave them alone.
[00:15:00] You want to let them lie, but they're going to come up, they are going to be revisited and they will be painful and upsetting. The question is, how are you going to react?
[00:15:19] How are you going to respond when that hurtful thing comes up and upsets you and you feel all of your walls go up and your hands are white knuckle and you just want to scream.
[00:15:38] You feel your heart clench and you have to school your face and you have to school your voice and you have to find a way to say, hmm, okay, I'm glad you remember that way, or that's a good memory.
[00:16:03] If you are doing self care, you will be better able to respond in a non committal, non judgmental, non angry manner.
[00:16:17] From personal experience, when I have been irritable or snappy back at my mom, it's typically because I'm under a bunch of stress or I'm tired or I haven't taken any time for myself to be okay, haven't done the self care that I needed before I spent time with her.
[00:16:41] When I go spend time with my mom, I try to make sure that I am as mentally and emotionally cool as I can be because that means that anything that comes up, I can kind of turn a blind ear to blind eye, deaf ear to. I can just.
[00:17:06] Well, that's interesting.
[00:17:10] Okay, cool.
[00:17:13] But I can let it move on. I don't have to hold on to it.
[00:17:19] This last time I did snap at her, she made a comment and she was being snarky, and she was being cranky with me.
[00:17:30] It's. It was, um, around me not having enough time for her and, um, being able to take her to a dentist appointment, and she was like, well, why don't you just find somebody else to take me?
[00:17:50] And I snapped at her, and I was.
[00:17:53] I was so remorseful afterwards because I snapped at her. And I said, mom, would you just stop it? I will be the one that takes you to the dentist appointment. I will make sure it's taken care of. And I've been telling you that I would make the time to do that. I have to call the dentist and find out when they can take you in.
[00:18:12] She was stressed because she was in pain. She was frustrated because she knew that I was stressed. And I had a lot of stuff going on. She had been hiding the tooth pain from me for a while, and now it was just to the point where she couldn't hide it anymore. And I was like, if you had talked to me sooner, then we could have taken care of this sooner, and you would have been okay.
[00:18:38] I wasn't very nice when I snapped at her and said, I will take care of it. I will make sure I take you. It's fine.
[00:18:51] I left her house. I got home, and I had to breathe for a minute, and then I felt like shit for snapping her head off, for not being more understanding and patient with where she was at.
[00:19:06] And there was more that goes into it, because the way I tell you right now, it sounds like a simple, stupid thing, but in the moment, it was much bigger.
[00:19:16] And I think that that's the way they all are. In the moment, they feel huge.
[00:19:21] And when you step away and you have a moment, it isn't that big of a deal. It's all okay.
[00:19:28] Take a deep breath. Do your self care. If you need to count to ten before you react, then count to ten before you react. If you need to remind yourself that they don't have a normal brain so I can't treat them like they do do that. If you need to remind yourself that they have their own reality and that new reality is completely different from the one that, you know, do that, you will be triggered. They will push your buttons. They will throw barbs at you. They will be irritable and cranky, and you just get to be the recipient.
[00:20:09] You're their recipient.
[00:20:11] Why is that? You're a safe space. In the same aspect, they may be angry and frustrated, but they don't know how to be angry and frustrated at the disease. Instead of you. Which means that they are simply just angry and frustrated and it comes out sideways.
[00:20:30] They are confused and scared and they don't know how to verbalize that. So it comes out sideways. It comes out at whoever is there in that moment. They don't know how to deal with their emotions that are coming up.
[00:20:46] All they know is that they are stuck in this body that is failing them, this mind that doesn't work the way that they want it to, the hands that shake all the time and they can't sign their own name. That it's hard to pick up a puzzle piece or do this or that because they are struggling. Like, it's hard to remember that sometimes.
[00:21:13] Especially when they're having a really good day and they have a really good day and they're having conversations with you. But then they throw a barb and you just like, but this was so nice and then you ruined it. They don't know. They just don't know.
[00:21:31] And it's so frustrating as the caregiver, when we step back and we remind ourselves of what they're going through.
[00:21:46] Makes more sense, makes it a little bit easier to have a little bit more compassion and be like, mom, I know you're in a lot of pain.
[00:21:56] Don't worry, I've got you.
[00:22:01] Don't worry.
[00:22:03] I'll take care of you.
[00:22:05] It'll be all right.
[00:22:10] I know that I'm never going to be able to go back and fix all the things from my childhood.
[00:22:17] I'm never going to be able to have that conversation with my mom because I know it will be too upsetting.
[00:22:25] It will be hurtful for her.
[00:22:28] So instead, I just have to acknowledge that this is the relationship I have right now.
[00:22:35] And I can choose to be kind.
[00:22:39] I can choose to be patient and compassionate, knowing that this is a mess for her.
[00:22:48] I can choose to end my relationship with my mom when she passes on a better note from my side, knowing that at the end, I did what I could to make sure that we had a decent relationship.
[00:23:09] So that moving on, I feel better. And I don't have regrets that I wasn't kind enough or patient enough or understanding enough.
[00:23:22] It's not easy, but you can definitely do it. Remind yourself and it'll feel a lot better. Maybe you can turn it into a joke. Maybe you can flip it upside down on its head. Maybe you can draw other stories or humor out of the situation a little bit.
[00:23:39] Do what you need to do to not respond to those needles, to not respond to the barbs, to not respond to the upset comments.
[00:23:54] If they had a normal mind, it would be a different story.
[00:24:02] In this realm.
[00:24:07] It's just so you have a kid.
[00:24:13] You have a kid that's scared and nervous and belligerent all at the same time, and they just need somebody to help them through it.
[00:24:22] You get to be that guiding light. You get to soften the blows a little bit. You get to be that support that helps them move from one to the next to the next.
[00:24:34] I think that's all I have to say about this one.
[00:24:38] Take a deep breath, do a little self care, and I'll see you next week for the next episode of Louis body and mindful caregiving. Until then, take care.
