Chapter 1: What is the main topic discussed in this episode?
Hi, I'm Rose Rimler, and this is Science Versus. Today we're sharing an episode from another show that we like. It's a podcast called Proxy. It's hosted by Yoé Shaw, who you might remember from the podcast Invisibilia. In Proxy, Yoé kind of functions as an emotional investigative journalist.
She starts with a guest who is going through something tough or confusing, something no one else they know can relate to, and then she finds the perfect person for them to talk to, to act as a proxy. She'll find someone who's been there, who understands the problem, and can hopefully help that person get less stuck.
The episode we're sharing today is about something near and dear to us at Science Versus, fact-checking. Yo-Wei talks to a journalist who can't stop fact-checking his mother-in-law. But in this situation, it's particularly fraught because his mother-in-law is losing her memory. She has Alzheimer's.
We like the way that this episode breaks down a situation that is tough and nuanced, and we think that you guys will like it too. It's coming up after the break.
Well, hello, Brian. Hi.
When's the last time we were on the mic together?
I don't think we were ever on the mic together. I mean, we were around mics together.
This is Brian Reed, a man who hit podcasts fall out of. You might have heard of his little show, S-Town, or his other little show, The Trojan Horse Affair. Brian now makes the podcast Question Everything, trying to make sense of what the heck is going on with journalism today. I met Brian when we worked together on my first big story, back in 2013, an entire hour of This American Life.
It was this really high-stakes story about Eritrean refugees trying to get to Europe, but were then taken hostage by smugglers, often tortured in all sorts of horrific ways, and forced to ask their families for huge amounts of ransom. I, as a reporter, felt way out of my depth.
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Chapter 2: How does Brian's experience with his mother-in-law highlight the challenges of caregiving?
That's me and my wife, daughter, and her in our house. And she has dementia. She has Alzheimer's. And I need help just figuring out how to be around, you know, the symptoms of that disease more.
When you say you need help figuring out how to be, how are you being with her right now?
The thing that is happening a lot is that I find myself wanting to like correct her or fact check her when she says something that isn't factual or like aligned with the reality that I'm experiencing.
What's an example of this?
It's just like a million daily examples. Like I'll come home and, you know, talk to my mother-in-law and she'll be like, oh, nice. I haven't seen you today. And it just hits me. It's like, well, that's not true. Like I saw her earlier, you know. Oh, my God. Or like the other day we were driving by some scaffolding in a building.
She was talking about like, yeah, the scaffolding's been up for years. And I'll just be like, that's just not true. You know, that's just not true.
As Brian told me this, I realized, oh, wait, I know that tone of voice, this side of Brian. Like, even in this interview, right after we said hello, the first thing he did was fact check me. When's the last time we were on the mic together?
I don't think we were ever on the mic together. I mean, we were around mics together.
Brian says, yeah, you know what? Maybe it is a product of the work I'm doing as a journalist.
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Chapter 3: What emotional struggles does Brian face while caring for his mother-in-law?
To help me understand, Brian told me what just making dinner looks like on a typical evening. Brian gets home from work, starts cooking. His daughter, who's four, is buzzing around, taking dishes out, putting them on the floor, begging him for candy. And then his mother-in-law greets him in the kitchen, asks when his wife Solange, her daughter, is coming home. To which Brian says, 6.30.
His mother-in-law goes back to the living room. Then a minute later, when's Solange coming home? 6.30. Again and again. Could be 15 times in a row.
What that is is like anxiety and paranoia, you know, from the disease. You know, when are they going to be home? When are they going to be home?
Yeah.
And so you try to give them something to occupy them. So I'll ask for help setting the table. And that's like a question about every plate or the plates will be brought out and then they'll be brought back in or something is put in the wrong place, you know? And sometimes I'll have actually had an expectation of like, oh, this will actually help me.
Like I actually need help setting the table and you kind of have to relinquish that. Like it's harder work basically to guide someone through it.
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Chapter 4: How does acceptance and commitment therapy (ACT) apply to Brian's situation?
And then in the course of doing that, I'll be like, oh, don't forget to like grab the napkins. They'll be like, oh, where are the napkins? They'll be like, they're in the corner. And they're like, no, I've never done this before. I'm like, you do it every night. That's not true. So it's like at the end of that kind of experience is when it'll happen.
Brian told me, you know what? Actually, that doesn't even begin to capture it because that's just dinner. To really help me wrap my head around how exhausting this is for him, Brian logged everything that happened one day after we spoke. The email is a catalog of one situation after another, any of which on their own might be tolerable.
But taken together without pause feels like one of those Kafkaesque dreams where you keep trying to reach your goal, but the obstacles keep mounting. Like Brian, his daughter, and his mother-in-law drive to swim class. Ryan is hoping to catch up with his daughter, but his mother-in-law interrupts, saying, I'm sorry, I've never asked where we're going.
She asks the same question six times in just 20 minutes. Once they get to the pool, there's more. Ryan leaves his mother-in-law for just a few minutes to help his daughter change. And when he gets back, she's already wandered off, worried they left her. He manages to corral everyone to the car to run an errand, grab dinner.
But then his daughter drops some glitter markers in a sewer grate and loses her shit. So now she's crying on the drive home. And through it all, his mother-in-law keeps asking him if Solange is back in town. Brian says, yes, she got home last night. They reach their street. She asks again, is Solange back in town? Brian is trying to parallel park. And she asks again, is Solange back in town?
Later that night, the house is finally quiet. His mother-in-law in bed downstairs. Brian is up late writing a script behind on deadline. And then suddenly she appears. He writes, she said she had a text message saying there was food for her in the kitchen. That's why she came up. She got very upset, started yelling. I looked at her phone.
She was reading text messages from a year ago about groceries being delivered. Brian redirects her to bed. She'll soon be back.
You know, like the famous book about Alzheimer's is The 36-Hour Day, is what it's called. And that is right, like every day.
What makes it even more maddening is that Brian had always enjoyed spending time with his mother-in-law. Long before the diagnosis, Brian and his wife had actually been trying to convince her to move in with them. To help with childcare, sure, but also just to hang out more. In his words, she's a badass.
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Chapter 5: What practical strategies can help caregivers manage their emotions?
I think with every correction or fact check that I'm doing, it's just a little bit of like, I don't want this to be true. I don't want my mother to want to have this. You know, it's like me swatting the disease away, but it ends up being directed at her rather than the kind of radical acceptance you need to have with a diagnosis like this.
I'm really sorry that you are dealing with this, and I'm going to try to find a proxy that maybe can help.
All right. Let me know what you find. I'll be curious.
After the break, somebody who gets it.
Hello, this is Jana calling in from Massachusetts. My too-niche-to-podcast conundrum is what do you do when you've been making small talk with a neighbor for like two years, but you still don't know their name and it's definitely too late to ask now.
But I'm glad Proxy is investigating other niche-to-emotional conundrums, which is why I recently became a member of Proxy's Patreon, because Yo-A and the team make this show independently and depend on listeners like you and me. When you join the Proxy Patreon, you get benefits like hearing episodes without ads and exclusive Patreon episodes. What a bargain.
Plus, you'll get a gold star for helping make the world's first emotional investigative journalism, which is important because feelings are everywhere and it's about time someone looked into it. To become a member, go to patreon.com slash proxy podcast. That's patreon.com slash proxy podcast. Can I get the Windows 95 startup sound?
Oh, my God, I can't find the stop button.
The day of the proxy conversation.
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Chapter 6: How can caregivers balance their needs with those of their loved ones?
Something called acceptance and commitment therapy, or ACT. A type of cognitive behavioral therapy. I reached out to Stephen C. Hayes, the person who created ACT. And he was like, sure, I could talk. But you know who would even be better? I know someone who uses this therapy specifically with caregivers of people with neurocognitive disorders. People just like Brian. This is how I found Claudia.
Hi, Brian.
Hi, Claudia. How are you? I don't know who you are or anything about you. Who are you?
I'm here at Eastern Michigan University where I'm an associate professor.
Okay.
Claudia Dressel is a psychologist who helps people with a neurodegenerative disease and their caregivers figure out how to make life easier and healthier for everyone involved.
I train people. I do research in that area. And for over 20 years, I have worked with families where one person has cognitive decline. I kind of want to tell my origin story here, too.
I'd love to hear that. Yeah.
When Claudia was in grad school, she actually had no plans to work in dementia care. She wanted to teach psychology at a university. But then one day, a friend from school asked for a favor. Could Claudia come to a senior center and sit with a man who has Alzheimer's while she met with his caregiver?
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Chapter 7: What insights does Claudia provide on effective caregiving?
And I thought this was quite amazing because he was somebody who was described to me as nonverbal and hardly speaking. And so ever since then, really... I've worked with people with cognitive impairment to try to find out how to best support them and their caregivers in terms of communication and relationships. The question is, what is so difficult about it and how can we remove the barriers?
And perhaps if not making it necessarily easier, perhaps even make it more predictable.
Is that the best you can hope for? Is it more predictable or is there some higher goal you can have?
What I hope for is that when people live together, that they can really make their life work together.
Claudia's goal is to not just stop problematic behaviors. She's focused on holistically helping both caregivers and the care recipient have a nicer time together. Ryan, of course, is nowhere near that. So I asked him to give the rundown of a situation, how he can't stop correcting his mother-in-law.
And that was leading to just a ton of tension, upset, strife.
how even when he does try to get help, some of the resources just make him angrier. He talked about watching this one webinar in a support group that particularly pissed him off. The webinar presented a bunch of scenarios of what someone with Alzheimer's might do and asked how the caregiver should respond. One of them was like,
Your loved one keeps going to the door and checking whether it's locked. Is this a problem or not? This might be annoying, but it's not harmful to your husband or anyone else. And it was like just one thing after another like that. Problem two.
And I remember my experience like in the group after watching this was just the tone, delivery, and presentation of that exercise, of that like webinar exercise.
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Chapter 8: How can caregivers find support and resources for their journey?
I find this much easier said than done. And she wrote back like, it's not easy. Take it moment by moment.
Yeah.
But it doesn't, I don't know. It just doesn't match my experience of it, which is this is fucking crazy. You're saying the same thing 40 times. How can I live like this?
I mean, this is your experience, and there is no arguing with that experience. I think, Brian, you give voice to what a lot of people are feeling. And I know that a lot of people are also exasperated because they feel as if there is a competition to be kind of a good caregiver without having these kinds of feelings.
Mm-hmm.
I'm just curious with Brian, would it help if you found other people who also are angry?
I can't say for sure, but it would certainly feel different. I can't remember a time where I've heard someone express their experience and I've been like, that's exactly how I feel.
So you're feeling alone with this.
Yeah. And I think, you know, my wife and I are going through it together, but her experience of it is quite different. I mean, she's angry in her own ways and in ways much more acute for her. I mean, she's incredibly close to her mom, which both makes the pain of it all that much worse. Mm-hmm. But she had an incredibly good relationship, and they really do have that to rely on.
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