Episode Transcript
[00:00:10] Welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski, your host. Thank you for joining and being present today.
[00:00:19] Today I want to talk about little lies and how they can actually be super beneficial with your loved one.
[00:00:26] But before that, we always talk about self care. And what did we do for self care?
[00:00:32] I was very blessed. This week was a little bit stressful, a little bit overwhelming, and my husband recognized that, and he was like, honey, what are you going to do for self care? He was asking me because he just wanted to head it off at the pass. And I was like, I don't know. I'm just irritable, I'm struggling. And he says, tell you what, I'll run you a bath. And I said, okay, fine. So he runs me a bath. And as he runs the bath, he looks at me and he goes, so any thoughts or ideas on what you would like to eat? Because it was like 05:00 and I said, yeah.
[00:01:07] I said, I want sushi and I want cherry ice cream. Like popsicles. I want a cherry popsicle that's got chocolate on the outside. This is what I want.
[00:01:17] I'm gonna get in the bathtub. So my husband was like, great, I'll go do that. And he went and he got sushi and he couldn't find the popsicles, but he did find cherry ice cream. And then I just put a shit ton of chocolate syrup on it, and that's what I got to eat. And then we just enjoyed the evening. And so I was very grateful for the self care my husband encouraged me to take, and I helped me get through that little rough patch.
[00:01:48] Little lies are beneficial. You know, we tell our kids, don't lie. You've got to be honest. But then we tell them that Santa Claus and the tooth fairy are real.
[00:02:03] We use that to our benefit to try to help them be a little bit better. Blah, blah, blah, blah. So we. We know that in some instances, little lies are okay, or maybe they're not. Depends on your stance.
[00:02:19] There are so many times that our loved ones are going to forget things.
[00:02:28] If we say, don't you remember that we talked about this?
[00:02:34] It's going to be more upsetting and it might trigger them and make them a little angry at you because they're insecure about the fact that you're judging them because you've already talked about this and they don't remember it.
[00:02:48] But it's not their fault they don't remember it. They just don't remember it.
[00:02:52] Instead of saying, don't you remember. It's like, oh, yeah, totally. So let's talk about that.
[00:03:01] It may be the same conversation you've had multiple times, and yet pretending like it's new soothes their discomfort and their fear.
[00:03:12] It helps them calm down and feel a little bit better in later stages of dementia. You might have a loved one who insists that their partner who died five years ago is coming home.
[00:03:29] Well, where are they? Why aren't they here yet? They said they were coming by today. Oh, I'm sure they probably will. If they said they were coming by, they probably will. We just need to give them some more time and it's likely that they will forget about it 20 minutes later, an hour later, if you just go with it instead of saying, mom, they're dead, I. The thing is that if you say, mom, that person died, then they regrive. Then it's, they've lost that person again.
[00:04:05] Instead of being able to wait and hope for them to arrive, it's this. Wait a minute, they're gone.
[00:04:13] Do you want to bring them that kind of grief?
[00:04:17] No, you need to play into it. Hey, where's my puppy dog? I just, I haven't seen her all day and I'm really worried about her. Oh, I took her to the groomers. She's at the groomers. She's going to spend the night there. They're just trimming her and making her all beautiful so that I can bring her back to you. Oh. Oh, well, that's really good. That's good. She was. Yeah, that's good.
[00:04:43] They'll forget about it later. But you played into it enough to wherever you brought them more peace. The one thing that's on their brain.
[00:04:55] I know that we don't want to lie to them, but in the same aspect, these little lies are a gift.
[00:05:06] Last week I talked about somebody who is very adamant that they have been to a ton of baseball games.
[00:05:18] In that realm, it's easier to say, hey, that was a lot of fun when we went, huh?
[00:05:31] Then it is to say, hey, you big dumb jerk, you never let us wint. You never let us go because blahda blah to blah blah blah. And I'm really mad at you for not letting us go. And then it just causes a fight and you're irritable with each other.
[00:05:45] Let them live in that belief that things are okay.
[00:05:52] My husband's grandfather, he was 92 years old and he was putting air in their tires. He had gotten a new air compressor, and as he was putting air in the tires of their car, he fell and broke his hip, and that meant he had to go and have surgery. And then he was in what they call manor care. It's, like, rehabilitive, and he was in rehab. And at this age, there's this thing, like, it's called psychosis. He was in the hospital, and he was angry and he was confused, and he was throwing things at the nurses that would come into his room. He believed that he was stuck in a golf cart and being held captive there and that somebody needed to get him out of this damn golf cart.
[00:06:43] He was very upset. He was upset because he was so confused, and he was confused because he was out of his normal routine. He was not at home with his wife. As long as he was at home with his wife, then he knew, this is my day. I get up, I go to the bathroom, and I take a shower, and I get dressed, and then my wife has breakfast on the table, and they do whatever they do during the day. They have a 04:00 scotch and a cigarette, and they had dinner. And then, you know, like, this is my routine.
[00:07:19] But all of a sudden, he's out of that routine, and he's stuck in a white room with complete strangers, and he doesn't see his wife.
[00:07:29] Now what?
[00:07:33] So my. Enter my husband. My husband comes into the room, and before he gets into the room, the nurses tell him, look, he thinks he's in a golf cart. He's being extremely angry and belligerent with all of us. We don't know know what to do for him, but we do recommend that you have somebody with him 24/7 so that he can stop being mean to us and abusive to us and that he will be calmer.
[00:07:59] So my husband goes into the room, and he sits down with his grandpa, and his grandpa's like, I'm glad you're here. I need to get out of this golf cart. And my husband says, mandy, that really sucks that you're stuck in a golf cart. We're working on it, grandpa. We're working on it. We're going to do what we can to get you out of this golf cart, okay? I'm glad somebody can finally hear me. I'm glad somebody understands me now. Jane knew he wasn't in a golf cart.
[00:08:31] He knew that he wasn't stuck. He wasn't being held hostage. There was nothing else going on. But simply by playing into.
[00:08:39] I understand, and that's really upsetting, and we're doing what we can to help you.
[00:08:46] Completely changed his demeanor, completely soothed the anger and the fear and the frustration brought in peace and understanding. Then my husband was able to find they have these visiting angels there. And there was a person sitting in a chair in the room, day in, day out, just kind of hanging out. Whenever grandpa would get frustrated, that person would go sit with him and be like, yeah, it's okay. We're working on it. Don't worry about it. And these were people who were trained to deal with elderly, confused, dementia type end of life situations. His grandpa only lasted another week, and then he had passed away.
[00:09:35] But in the meantime, telling a little white lie was what gave him more peace in the end of his life.
[00:09:48] As this disease progresses and our loved ones get more and more confused, we will be telling little white lies more and more frequently. And it's okay because it helps them out.
[00:10:04] My mom is starting to recognize that she is forgetting things.
[00:10:10] And she said, crystal, is forgetfulness part of what I've got going on? Mom, you have. Yes.
[00:10:19] My brain was like, you have dementia, and you can't remember that? Dementia is memory loss.
[00:10:27] You know this.
[00:10:29] I wanted to be snarky with her, but instead I was like, yeah, it is, mom, I'm sorry. What are you noticing? Like, let's talk about where you're at and what are your thoughts?
[00:10:42] So she'll say to me, I think I may have already told you this, but blah, blah, blah. And she'll tell me something.
[00:10:52] Most of the time, she's already told me this.
[00:10:55] Most of the time, she's already told me this. But every time, I just pretend like, oh, okay, well, that's good to know. I'll make sure I put it in my calendar.
[00:11:05] Because she doesn't need to be upset.
[00:11:09] The more upset she gets, the more fearful she gets, the more anxious she gets, the more she shakes, the more all of her symptoms increase. And at some point, she starts to not trust me a little bit. So why not soothe it all and make it a little bit easier?
[00:11:23] The white lies can help.
[00:11:26] It's not bad to say they ran to the store, or they're coming a little bit later. I thought Jean was going to come by. You are Jean.
[00:11:36] Oh, I'm sure she'll be here soon.
[00:11:43] It hurts knowing that they don't recognize you anymore.
[00:11:48] But instead of saying, I am Gene and trying to get them to understand that you are Jean, because you're so upset, you end up upsetting them more, and then it just deteriorates from there.
[00:12:04] A little white lie.
[00:12:06] She'll be here soon. And in your brain, you're like, she's here. Soon she's sitting in this chair with you.
[00:12:16] Remember, it's not them.
[00:12:18] It's the disease. And it is perfectly fine for you and them to be angry at the disease, angry at what the disease is doing to them.
[00:12:33] But preserving that relationship, preserving that love with the two of you is the most important thing.
[00:12:43] How can you help them find a little bit of peace in this scary, fearful, overwhelming time that they are experiencing?
[00:12:53] I think that's all I have to say today.
[00:12:56] I hope you do a little bit of self care, a little bit of self love, and come back next week for Lewy body and mindful caregiving. Till then, take care.
