Episode Transcript
[00:00:10] Welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski, your host, and this week I want to talk about trusting the evidence.
[00:00:18] But before that, we always do self care. And this week I played pickleball.
[00:00:23] I haven't played pickleball in a couple weeks because life has just been so crazy, and it was really good to get back on the court and play with people that I haven't played with in a while and be re welcomed back to the group. So that was a lot of fun, and I hope to be playing more pickleball, but we'll wait and see what happens and how things manifest moving forward. So, trusting the evidence, Lewy body dementia in general, whether you're talking about Parkinson's or any type of Alzheimer's or specific types of dementia themselves, they all have hallmarks. They all have things that you can say, oh, yep, that's part of dementia. That's part of dementia. That's part of dementia. And you can look these up. I'm not going to dive into any of them. I'm not going to do an overview because that would just take too much time and it's not specific enough for people.
[00:01:23] I encourage you to look it up for your own person, for your own loved ones, so that you know what you're looking at and can kind of keep an eye on how things are going.
[00:01:34] Trust the evidence.
[00:01:37] This particular topic comes from a conversation I had with my younger sister.
[00:01:43] We were chatting. Now, my sister calls my mom every week on the same day at the same time every week, and mom and her have a little chit chat and gab for however long, and then they move on. And one time after she talked with my mom, she called me up and she said, I need you to help me with something. And I said, okay, what's that? And she said, I talked to her for, say, a half an hour every week. And when I'm talking to her, she sounds perfectly normal. She sounds perfectly normal. She's remembering everybody's name.
[00:02:28] She seems perfectly fine. And I don't understand how you say that. She has. I mean, I know because I have seen it in person, but when I talk to her on the phone and it doesn't come across, it starts to make me go, well, maybe she doesn't really have something, or maybe she's not declining the way that we think she is because she sounds so normal. So she said, I need to know the evidence. I need to know reality and the truth.
[00:02:58] And this got me to thinking because I think that those who don't consistently deal with our loved ones on a day to day basis. They can come in for a day or two and there's this phenomenon where they perk up and for two or three days they seem absolutely normal, and then they're suddenly, you know, then they start to decline because they're tired and they slip back into their old stuff. But most people, when they come to visit, they're not there for three or four or five days in order to see that slide back into where they're at. They only see the rally into, look at how good I'm doing. Um, and it's not a conscious thing. It is absolutely not a conscious thing. It is a subconscious thing. It's just the way that the body does. It's like, oh, somebody's coming into town to see me. I'm excited. I'm looking forward to that. And we let them know who this is reminding them, and they're like, oh, I look forward to that person coming into town, hey, you're here. And they just naturally do this.
[00:04:06] So then that person goes home and they're like, I don't know what you're talking about. They seemed perfectly fine. They seemed perfectly normal. Not a big deal. So they don't see the decline. They don't see the confusion and the upset as much as, say, you or I do. Who, the people who are with them on a day to day basis, working with them, they don't see the anxiety when you, the caregiver, are going to be gone overnight or for a few hours one day, and their anxiety goes through the roof and they're like, well, when are you coming back? And what's, what's going to happen? And who's, who's going to be here? What if something goes wrong and I need help? You'll be okay. I promise you. I've got you support. They don't see the super shaky, emotional, stressed person or the confused person that you see on a regular basis.
[00:05:06] They don't see the person who needs support while they walk around on a regular basis. So they talk to them on the phone or they visit, and that's, that's their view, that's their picture of your loved one.
[00:05:22] So we have started this thing where when something is going on, I can text her and say, here's some evidence, and I let her know what's happening in that moment or what just happened so that she can be like, oh, yeah, that makes sense.
[00:05:43] Or she'll text me and she'll say, hey, I need some evidence.
[00:05:50] Because I talked to her and everything seems fine.
[00:05:54] And so at that point, I will be able to remind her of this, that or the other.
[00:05:59] Sometimes I myself need the evidence, and I will need to have a list, or I will need to talk to Jay and be like, hey, honey, I just.
[00:06:10] She seems really normal today, and that's just.
[00:06:14] And is she declining, like, from six months ago to now? What are the differences? And we'll have a powwow so that we can talk about the differences and the decline between six months ago and today and all of the medication changes that we've had and all of the other issues that we've had. So that I can go, oh, yeah. Yep. Okay, so I'm not making this up. This is absolutely real. This is what we're dealing with. Even I sometimes need a reminder, even though I'm in it all the time. But when you're in it and you're so up close, sometimes you don't see the little stuff because you are steadily watching the decline. So it's not, it's not such a big deal. It's not such a big, drastic difference. Whereas a family member might come in in January, and then they might come in in July and go, oh, so that's a shift.
[00:07:11] So now I've got to walk on her left side because her right side can't, can't loop through my arm for the added stability. And she's a lot shakier now than she was three months ago. Oh, she is. I hadn't really noticed that.
[00:07:27] These little things happen and progress and sometimes it's not that I miss them, it's just that I'm adapting to them as they are going on, which means that six months down the road, I don't realize things have changed so much because I adapted as we went. It's like slowly turning up the water. You know, if you're sitting in the water and it's 80 degrees and then it goes up one degree, you don't notice the difference. Two degrees, you don't notice the difference. But over time, then it's 110 degrees and you're like, wait a minute.
[00:08:05] How did this water get so, I mean, it's lovely, don't get me wrong, but how did that shift and change? When did that happen?
[00:08:14] Coming up with a list, coming up with a way to recognize and reference the differences and the evidence is beneficial for me. It is beneficial for me because I can look at right now at this point, these are our hallmarks. These are our medication dosages.
[00:08:37] And then six months later, I look at it and I go, oh, we're maxed out on that medication. We're maxed out on that medication. We went up on this medication and we went up on this medication. So we've definitely had a change.
[00:08:52] Just looking at the medication, then looking at her parkinsonian tendencies or looking at her confusion or her memory loss, all of the little things that I just naturally adapt to, if I write them down, it helps me recognize, no, no, no. There is something going wrong. I shouldn't discount it. This is the deal. So one of the things, like, for example, my mom's stress and anxiety when we travel, um, it, it used to be that she could go to Utah on her own and have lunch with her siblings and spend time with my brother and no issues. Now I have to go with her and I have to walk her through every step of the way. When we're walking onto the plane, I tell her what seat we're going in. And then she asks me 2 seconds later, what seat are we getting to? What seat are we going to? What seat are we going to? And I get her to the seat and we sit down. And then I organize everything because the anxiety and stress of travel shuts her memory down and she can't remember at all until she's in her seat. And then she can have a little bit of a conversation with me.
[00:10:05] But that's what we do.
[00:10:08] So that is one of the shifts. Every time I take her to Utah to see her siblings, I pay attention. How is this trip different than last trip? Because that's evidence. That is evidence that I can trust and say, yep, am I going to be able to do this next February, knowing that there will be another difference?
[00:10:32] I'm thinking of other examples of where her brain is and stuff. I asked Jay if she had declined, if he thought that she had declined. And he was like, well, yeah. And he gave me some examples. Then the very next day, I went grocery shopping for a business and mom knew I was going and she said, well, you can bring all of the cold stuff that you would normally put in the fridge and just bring it to my house. I said, yeah, you have room in your fridge. And she goes, oh, no, my living room is warm and or cold enough. I said, it is. She goes, yeah, while I'm sitting here, I'm just freezing until the air goes off and then I'm roasting, but then it comes back on and I'm cold again. I think it'll be cold enough for the stuff you think your living room is cold enough for the refrigerator stuff? Oh, yeah, yeah. Your. It will be just fine. You can leave it in my living room overnight.
[00:11:32] Mom, I really appreciate the offer. I think I'll put it in the fridge out. You know, I think I'll put it in the garage fridge. But I thank you for the offer. That's really sweet of you to think.
[00:11:44] Meanwhile, I'm like, she really thinks her living room is cold enough for refrigerated food to keep it good. That's a change. That's some evidence. That's like, hmm. A normal brain would not think that.
[00:12:03] But her brain does.
[00:12:06] She doesn't have a normal brain. She's a little bit more irrational and focused on things like, she has this pothos plant that I got for her that I made from clippings of my own pothos plants, and it has grown, and now. And she was like, crystal, it's touching the floor. It's touching the floor. It can't touch the floor. And I was like, okay, mom, let's fix that.
[00:12:28] So she wants it to go up and over her pictures and then along the windows in her living room. So I put them up there, and then I go out there. Crystal, that one is yellow. You need to get that leaf off. Oh, okay. I can get that. It's just barely turning yellow, though. Do you want to wait for a little bit and see what happened? No, it's yellow. It's dying. You need to get it down. It's really bothering me that that's not taken care of, and that picture is crooked. Okay, well, that's crooked because of the weight of the plant on it. I don't know if I can fix that. Well, you need to fix that because it's crooked, and it bothers me.
[00:13:08] My mom never fixated on things like that before, but now it is a stress for her. If things in her environment are not just right and those things that are not just right, she has nothing else going on in life, so she fixates on that. And then she's like, that needs to be adjusted. That needs to be taken care of. And who's the one that can take care of it? Me. Why is that? Because she can't remember how to necessarily change the batteries in her stationary bike. She can't remember how to do this or that. So she needs me. She couldn't pull. There was a.
[00:13:51] Like, a mat in her shower that had texture, so it made it less slippery. She couldn't pull that off the shower. She was like, I don't know how to get it off. I don't know what to do. And I was like, you just grab and pull and it pops up.
[00:14:04] Oh, well, here, you need to put this new one down. She couldn't put the new one down. All you do is lay it down and step on it inside. But she couldn't do that. Like, looking at the things that she is struggling with, that she fixates on, that she challenges herself with. These are the evidence for me. And as long as I write the stories down, as long as I know that this is going on, then I can remind myself, oh, yeah, this is absolutely true. She is not using a normal brain. She is forgetting more. She is a little more confused, more shaky, struggling. I have to document the little things. And then when my sister says, hey, I need proof, then I can give her an example.
[00:14:50] When I say, I need proof, I can look at my examples and go, oh, well, you know, a month ago, she was walking around by herself, or a month ago, this was this, and that was that.
[00:15:05] Having the evidence and then being able to share that evidence with those people who are not here as often, is hugely beneficial.
[00:15:20] It means that it's not all in my head and that I'm not making it up. It means that it's not.
[00:15:28] I was going to say it's not in her head and she's making it up. It is in her head. Her head is making it up.
[00:15:36] But the way that these, this evidence is happening and these little things are happening, I can then look at the hallmarks of dementia and say, oh, that's one. And that's one. And we are shifting from this phase of dementia to this phase of dementia, because I can see how all of these things are shifting and changing.
[00:16:04] I hope that helps you a little bit.
[00:16:07] I hope it inspires you to kind of pay attention and see where you're at, and maybe it'll make it a little bit easier when you're talking to those loved ones that aren't as close so that you can demonstrate the reality of where your loved one is at.
[00:16:28] That's all I have to share for today. I hope you have a great day, a great afternoon, a great week, and come back next week for Louis body and mindful caregiving. Until then, take care.
