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.
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.
But I was lucky to have Brian as my producer, coaching me in interviews, helping me write scripts, making sure I didn't fuck up.
He was patient.
He made me feel safe.
He also made working on a decidedly not-fun story.
Dare I say fun.
At times we'd spend all day cooped up in a hotel room listening to hostage calls.
We'd huddle around a laptop speaker, our translator, telling us what was happening, occasionally breaking down in tears, while brian and i furiously typed trying to get down everything he said.
It would be hours and hours of this, but then brian would force us to go out to a bar, buy a round of beers, get us talking about our lives joking, laughing.
In other words, Brian knew how to manage the vibes, to make sure we didn't get stuck in the heavy.
I didn't tell Brian any of this back then, but I cherish that time together.
So when I ran into him at a conference last fall, I was excited to catch up.
He was like, what's up with you?
And I showed him a photo of myself pole dancing in a clean Xbox costume and told him about the show I was developing.
And Brian, it turned out, had been struggling with a very specific problem.
What some people might refer to as a niche emotional conundrum.
Can we start there?
What do you need help with, Brian?
I need to help figuring out how to better, more healthily and kindly interact with my mother-in-law, who lives with me and my family.
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 the symptoms of that disease.
When you say you need help figuring out how to be, how are you being with her right now?
Um, 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, um, I'll come home and, 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.
Yeah, I feel like my brain has kind of just become wired in a way where I am just like attuned to these details and whether they're true or not.
Even the idea of whether something's factual or not.
Like I don't think a lot of people think that way, but I do.
Like the word factual comes into my head a fair amount.
And so then I go home and find myself in this position where like, my mother-in-law will say something and I just I can't turn that off.
And I end up like correcting her or butting heads with her over this disjointed reality and she gets defensive or upset or hurt, like she doesn't want to feel like a burden to me.
I say this with respect, but it sounds kind of like you're being an asshole.
Yeah no, i partly am.
But yeah no, you have to understand what it's like to live with someone with alzheimer's like in your house.
Yeah, which I don't.
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.
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?
I'll be like, they're in the corner.
And they're like, no, I've never done this before.
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.
Brian 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.
She was a physician.
Very interesting person.
Woman, you know, who was like the first in her family to go to college and became a doctor.
And she would tell me about things she was reading that I was always like, oh yeah, I didn't know, you were like interested in like Vietnamese history or just you know, just like very voracious reader, see her movies.
Yeah.
Really into art.
My mother-in-law was incredibly intelligent and smart and funny.
And she still is all those things, but she's losing those faculties, you know, and that's there's grief there.
So when she says something that's just not true, those things end up triggering the deeper feelings.
Brian says, even with her Alzheimer's, his mother-in-law can still be really present at times, aware of what's happening.
And so sometimes, even when he manages to bite his tongue and not correct her, his mother-in-law will see his thoughts on his face and she'll call him out on it.
She'll say like, Hey, stop frowning.
Like you have such a nice face.
It's going to get stuck that way.
Or like there've been a couple of times when we've been arguing and my mother-in-law says like let's just pause.
She'll just like grab my hand.
Wow.
You know, and she's someone who's taken care of people her whole life and she'll acknowledge that and be like I've had to do this too.
And I'm so appreciative for all that you do.
And one of the things this disease makes you very aware of is that you know just the the value of time.
It's a progressive disease that goes in one direction.
And I do feel really bad when I'm spending time kind of arguing over these things because it feels like it's poisoning the time we have.
Brian has been dealing with this for three years now.
He goes to therapy.
He gets help from a social worker.
He reads books.
He goes to support groups.
But even so, he needs help figuring out how to not be so frustrated with his mother-in-law.
He doesn't want to spoil the precious time he and his family have left with her.
And this is why Brian came to us.
I think ultimately it comes down to like a matter of acceptance too, you know?
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 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 two-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.
Hello, hello.
Brian seems surprisingly sunny on the video call.
I just went on vacation.
We went with just my wife and my daughter.
So we were relieved of dementia caretaking duties for a week.
You seem refreshed.
I couldn't help but notice Brian was smiling more.
I actually turned my phone off.
I read two novels, which I can't remember the last time I did that.
Of course, now he was back to real life.
Back to all of life's problems.
I just got a notification that the proxy's here.
Okay.
All right, let's do it.
Okay.
You ready?
So the proxy.
As I was looking for a proxy for Brian, I thought about something he told me.
How on the surface, the problem was that he couldn't stop correcting his mother-in-law.
But deeper down.
It was probably his way of responding to the disease and the pain and terror it was inflicting.
Brian said he probably needed to just learn how to accept the situation.
But how?
He didn't know.
So the proxy team started poking around the research on acceptance.
And we discovered something that seemed almost too on the nose.
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.
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.
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?
And she told me that I didn't need to do much, that the person with a neurodegenerative disease had basically stopped speaking.
And I come from a little village in Germany.
You hear my accent.
And I had always lived with my grandparents.
And many of my peers also really had close ties with their grandparents.
So I had seen older adults of all ability levels, really.
And I thought, you know, I can do this.
I can be in the senior center and sit with this person.
And while we were sitting there, somebody switched on music and a boombox.
They started line dancing.
And suddenly I hear this voice next to me that says, this is all a bunch of crap.
And I thought, wow, you know, he can he can speak.
And I took him into a quiet area and he told me a lot about his life.
The man told Claudia about his kids, how he used to work at a department store.
He talked a lot, if not always clearly, but she was able to figure out what he was saying.
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, was so at odds with my experience of this.
It was just so like calm.
And this is not a problem.
Let them check the door if it's locked and then just go up as the caregiver and make sure the door's locked and it's fine.
This is not actually a problem.
They can check the door if they want.
You don't need to get up in arms about it.
It might be annoying, but it's not a serious problem for anyone.
And in my head, I'm just like, yeah, this happens in my house.
I will spend an hour and a half of my evening doing that.
Like, that's not not a problem to me.
I don't know.
I don't that's just me being self-centered.
But I would not say that's not a problem.
I would say it's not a problem if I'm willing to make like a huge sacrifice.
Even just like this influencer that I follow.
Hold on.
Give me one second.
Ryan holds up his phone to show us a video from Instagram.
The caregiver is looking into the camera with a knowing look on her face and hits the camera in time to the beat of the song with the caption.
Stop correcting them.
And I'm just like, easier said than done.
I don't know.
Like, what are you talking about?
Yeah, duh.
I don't know.
And so I actually commented on this.
I was like, was this easy for you to acclimate to?
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.
Hmm.
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.
But she had an incredibly good relationship and they really do have that to rely on.
We had a good relationship, my mother-in-law and I, but she's my mother-in-law.
It's not the same, you know.
And so our experience isn't the same.
So I feel like I'm often like holding a lot of like anger and frustration with the experience in the house.
Yeah, I think I've vacillated, feeling like I just must feel this differently than other people, and it feels very lonely.
Or other times.
I do feel like I know other people are feeling this and nobody's being honest about this.
And I feel like that's like the big fact check here, frankly.
This is the webinar that's created to help caregivers.
Like this feels dishonest.
It feels emotionally dishonest for what this experience is actually like.
And noticing that different caregivers come from different kinds of perspectives, right?
So I think, to tell you quite the truth, I think that to some extent at least, the expression is gendered, meaning more men are willing to talk about this being just really really brutal and also infuriating.
I think there is less acceptance, less welcoming for women who express similar kinds of things.
Yeah, I think that's definitely true.
But Claudia, you say they're out there?
Other people feel this way?
Or am I one of them?
I am saying that there are lots of them.
I mean, I can quote some people who just say, you know.
What do you got?
We're totally fucked.
Either we are going to be the person who is giving the care or the person who is receiving the care.
And that's what our life is going to look like.
And nothing else can make that better.
You got more?
Those kinds of things, lots of them.
Lots of people who are very angry because it also doesn't seem to be fair.
And so fairness also comes up as one of those things, as you expected your life to be just different.
And you didn't have to think about how to adjust your life in these different ways that, like Brian said, are sometimes quite ridiculous.
It's almost as if there is this secret within our society that a lot of people will be affected by cognitive decline.
Nobody really acknowledges it.
Nobody prepares you for it.
But then when you find yourself in the situation, Everybody says to you well, if you just did X, Y and Z, then it would be okay.
And everything rebels against the if only.
Because you know that that is not true.
It's not like if only one thing.
It's a whole rearrangement of your life that is happening.
When you think about it, it's almost like a murder has been committed.
And...
There is kind of no corpse.
And you are the one who is saying, can't anybody see just how incredibly fucked up this is?
Right.
And so then when I'm not getting that acknowledgement, like the way that frustration is manifesting is like in my interactions with my mother-in-law taking it out there.
Yes.
When we return, Claudia tells Brian about the tools he can use to help him stop venting at his mother-in-law.
So Brian is feeling lots of shitty emotions.
He's feeling angry.
He's feeling frustrated, sad.
This turns out to be the way a lot of dementia caregivers feel.
Way higher levels of depression, anxiety, and stress than the rest of us.
And because we're talking about nearly 12 million Americans who, like Brian, are providing unpaid care to a loved one in this way.
That's a huge, steaming pile of shitty feelings.
Shitty feelings that are affecting everyone involved.
Researchers have found that these stressed-out caregivers tend to skip doctor's appointments, not take breaks, not exercise, not see friends.
But here's the thing.
The more caregivers neglect their own well-being and the more they become distressed, the worse the people they're caring for tend to do.
They're more likely to have worse symptoms of dementia, more likely to end up in the hospital, even more likely to be abused.
It's this terrible irony.
The more a caregiver gives up of their life to care for the person they love, the more the care they're giving can suffer.
So what to do with all these shitty feelings?
And how can Brian stop taking out his frustration on his mother-in-law?
Claudia says typically...
We feel a bad feeling and we want to get rid of it.
Maybe go to yoga, start boxing.
The point is to purge the bad feeling so you can be a better caregiver who doesn't snap at your confused mother-in-law.
But Claudia says that's just temporary, because you can't really get rid of a feeling if you don't change the situation.
And if you bat away the feeling without trying to understand it, like, no, no, no, no, no, no.
Those are your clues.
Claudia wants caregivers to sit with and feel all the feelings, even the bad ones, so together they can observe and trace the steps that led to them, to try to solve the mystery of why they're stuck, why the entire family might be.
When Claudia talked about her process, it really does sound like she's an emotional detective.
She visits the homes of her clients.
She'll interview the caregiver at great length, gathering all of their negative feelings, the expectations they're trapped by, the situations that make them upset and the ripples of that upset.
And then she'll gather their positive feelings, their hopes, their dreams, the moments they feel most connected.
She'll pull their medical records.
She'll find out how much support they have, the things they're good at, the things they're bad at.
Just an unbelievably detailed profile of the person and their context.
And then she does that again with the person with Alzheimer's, then the wife, then the child.
Meanwhile, Claudia is observing and recording all interactions on video to analyze later, to look for patterns.
Then with the caregiver, she'll throw the most salient factors on a whiteboard, kind of like a corkboard in a police precinct, but more touchy-feely.
No dead bodies.
This is the family's map.
It shows all the invisible forces shaping the situation.
Claudia showed me one of these maps.
It's broken up into different sections.
There's one for the caregiver.
Let's call her Sally.
Another for Sally's dad, who has dementia.
One for Sally's mom, who has trouble getting around.
In each of these sections, there are a bunch of different shapes filled with text.
The diamonds are the things that can't be changed.
Like for Sally, it says, sudden death of husband.
And then the circles, these represent the things that can be addressed, maybe in therapy.
For instance Sally, feeling like she's the only one, that everyone has to rely on her, when in fact there are other family members who could step up.
Finally, the squares.
These are the potential effects of this challenging situation.
For example, that Sally is burned out or that her mom feels guilty about not being able to care for her husband.
Claudia and Sally will constantly return to this map, updating it and seeing what they can try to change to improve the situation.
It's a lot of information and the process can take months, even years, and really only scratching the surface.
But These are the first steps of acceptance and commitment therapy, Claudia's version of it.
And Claudia says early studies of this therapy have been promising.
They're showing it can actually help with dementia, caregiver burnout and depression.
How long has this been around?
It's been around since 1998.
I just don't understand.
How have I never heard of it?
Like I'm in these I'm having meetings with people and social workers.
I've just never, you know, I don't know.
The reason you haven't heard of it is because it comes from clinical psychology.
And sometimes the fields are so different that it takes a while for things that come from clinical psychology to go into this other context, which is the geropsychology context.
Oh, interesting.
It's like balkanized.
Claudia walks us through how ACT could help Brian.
She says, a lot of the time caregivers can get stuck in a specific situation because there's some feeling they have that they don't pause to investigate.
They're just reacting.
And it can prevent them from implementing a possibly really obvious fix.
Imagine somebody has a really hard time knowing where things go in the kitchen.
That's a very typical one.
And what I see caregivers do is they label, often they label cupboards with post-its.
Yeah, we've done that.
And it actually turns out that does not work.
Yeah.
Most of the time those kinds of things.
They don't work for the person because they might not benefit from any kind of reminders or cuing at all.
So then the next step would be, if you still want the person to be somewhat active in the kitchen let's say they are supposed to get a cup and reheat their coffee still in the microwave in the morning.
And a caregiver might say, well, I'm under no circumstances am I going to take off my cupboard door.
Not wanting to take off the cupboard door could sound like a small thing, just setting a tiny boundary.
But Claudia says behind it is this voice yelling, this is unfair.
This is ridiculous.
And so the first thing is to simply accept this is how I'm feeling that kind of acknowledgement that in itself might create some space and some relief.
So the more we argue with the feeling, the harder it is going to be to do what is effective.
Next up, deciding whether it's necessary to act on feelings that come up like that one about the kitchen cupboard.
Do these feelings help solve the problem?
Or do they just make me more miserable?
It makes sense that they come up.
And they're not very useful.
Both things can be true at the same time.
So I hear the acceptance part.
What's the commitment part?
The commitment part is really thinking about what would I really like to have happen?
And how can we help you go into the direction that will work for you and your family in the long term?
Claudia means over everything else.
What's most important?
Is it to enjoy the time you have left with your loved one who has Alzheimer's?
Is it to give your kids a stress-free home?
And how do you work toward that without getting tangled in feelings like shame and resentment?
For example, I've worked with families who have promised their father on his deathbed that they will take care of mom.
And what they found out is that mom was much more impaired than they had bargained for.
And they tried to have her live independently in her home and then take shifts.
Those were five siblings.
And within a few weeks, it all had fallen apart.
It was really untenable.
And so it's really the thinking about the ideal situation, the practicalities of caregiving, how they really intersect with your life.
Thinking about the four-year-old, you know?
Yeah.
Because you are also a sandwich caregiver.
Yeah, yeah.
And so the commitment part is the work of actually figuring out not only what you ideally would like in terms of your relationship, for example, with your mother-in-law, but also what practically you could do in terms of steps to move into that direction.
So yeah, walk me through that.
How does this apply?
Because um, there's been a stretch recently of my mother-in-law, I guess, getting up in the middle of the night and opening her door and sending off the alarm.
So we're being woken up two or three times a night and my wife's having to go down there and kind of settle her down.
Generally my wife puts her mom to bed.
But there you know sometimes her job.
She has to work at night a lot or be out at night.
So that time will kind of fall to me and kind of the Like we'd done problem solving.
This is credit to Solange, to my wife.
Like she's figured out like okay, if I really kind of make like a routine around bedtime, it's like clear that my mother-in-law is going to bed.
She kind of tucks her in, turns the lights off in a certain way, shows her that the door is locked.
That has seemed to like make it better, that she's like not getting up in the middle of the night and opening the door and setting off the alarm and waking us up over and over and over and over again.
So I tried to implement that when I was home alone with her.
And, you know, I go to turn off the light and my mother-in-law is like, no, no, leave the light on.
And I'm like, no, it's really important to kind of turn off the light so that we know it's bedtime.
No, no, no, leave the light on.
And just like you know, fighting with me and like won't get ready for bed, just leave the light on.
And I know that if, like this doesn't happen like, we're probably going to be up a punch that night, you know.
Or she could walk out the door.
Like, I don't know.
You know what I mean?
It becomes urgent for you almost.
Yeah.
And so then I try to explain to her like listen, like I'm doing this because the last few nights, like you've gotten up several times in the middle of the night.
Mm-hmm woken us up or the alarm company was called, and so we found that it helps.
Like if you turn off the light, she's like that didn't happen.
I'm like yes, it did happen.
This is happening.
It's happened like seven times in the last week and i get activated like that.
I'm like you're denying this like incredibly present, exhausting reality and i'm trying to stop it and you won't let me just, you won't just trust me that this will help us.
All you know, and you find yourself um explaining the Over and over again.
Yeah.
And I think the self-talk there is just like, I'm already kind of frustrated in those situations.
Cause I'm like, we were up three times last night.
I'm exhausted, you know?
And like, it shouldn't be this way.
Like, I don't want to do this.
Like, I don't want to live this way.
Like this requires a professional.
So there might be a way that you can be effective while having these kinds of thoughts.
But Here we also want to make sure that if you're saying you shouldn't be doing this and it needs a professional, is it tenable or not?
Would you like to give direct care?
You are giving direct care.
Bedtime routines, night awakenings, those are direct care routines.
Many family caregivers don't give direct care because it's just too much.
Caregiving has a lot of different kinds of aspects.
You can be a caregiver who does direct care.
You can be a caregiver who checks in with people.
You can be a caregiver who just monitors and supervises or manages.
There's different ways of caregiving.
There's a multitude of ways that you can actually show caring for somebody.
And the question is, what is actually right for you?
What is it that you would like to do and what is it that matters to you?
Is another way of putting it like, what am I actually built for?
Well, I don't know if it's your constitution, but the question would be it has more like to do with willingness.
What can you see yourself do in the service of what matters to you?
Claudia says, obviously, Brian only has so many resources.
There are other people involved. he has to negotiate with.
But she says it's important to get clear on which caregiving tasks you can actually see yourself doing in the long run, because a lot of people see caregiving as all or nothing when maybe there's a creative, more sustainable solution.
You'd be surprised.
She says how many caregivers don't ask for help from other family members Or don't take advantage of in-home care, even when they get funding from community agencies.
Taking myself as an example, I probably would not be a person.
Even though my parents matter to me tremendously, I probably won't be the person to do their direct care and to assist them with instrumental activities of daily living.
Yeah. because there's too much of a conflict there.
I value being there for my parents.
And at the same time, my job matters to me a lot.
And now I'm here 4,000 miles away.
It turns out that when you make a choice to do one thing, you often can't do all the other things.
So how I can be there for them differs.
In the summers I can spend time with them and I can be much more pragmatically involved and work remotely.
So what can you actually do?
What would you be willing to do in the service of what matters to you?
Yeah, I don't think I ever totally pictured this.
I didn't picture myself as a caregiver giving care.
I pictured living with my mother-in-law, and there'll be professionals who will help us with that.
Right.
And we do.
We do have an aide during the day sometimes, and that's also been very hard.
Yes, you have somebody else in your home.
Yeah, so it comes with its own costs.
Yes.
It's not like, oh my God, this is perfect.
Absolutely.
But I mean, that's part of the acceptance.
Part is just even accepting this as part of my identity and role in life, as being like a caregiver for an elder with dementia.
A lot of people start caregiving because of a sense of duty or obligation.
And at the same time, people are not prepared that caregiving can be longer than caregiving for a child.
And so part of what we need to do is really kind of figure out How sustainable are things in the long run?
Yeah.
I mean, I have not prepared for that.
How will relationships be actually okay?
How can you maximize the relationship with your mother-in-law?
Because it seems that kind of suffers from arguing.
If you ask her, she probably wants to have great relationships with the three of you.
The question is how to actually make that happen.
So over the long term, it works.
Brian, you were nodding when Claudia was speaking just now.
I'm curious what has been going on through your head.
I think, like the first part of this conversation kind of just acknowledging that that it's okay to feel angry and kind of letting me feel that that actually, like I felt that kind of very physically, kind of a less pent up feeling.
This doesn't feel that way.
It's more kind of we're talking about a process that I could see applying and it's trying to, I guess, trying to find the relationship between the two because yeah, I do find this to just be like a very emotionally charged fraught, Just an experience that involves a lot of emotions.
Is there sadness about trying so hard and not making it work?
Yeah, of course.
And I feel guilt and grief.
And yeah, one thing this disease does, is it certainly or at least I'll speak for myself it makes me very aware of how precious time is, you know, with this loved one who is declining, but we do get time with her.
That's one of the great benefits of living with her.
We get these small moments.
Like when Brian's mother-in-law reads to his daughter, or when the family takes an extra long walk in the neighborhood or sitting on the stoop together.
Brian's personal favorite way to connect is to sing.
Like some, Donny Hathaway song will come on And Brian and his mother-in-law will end up singing together, sometimes dancing.
And I both want that with her.
I want to give it to my wife, to my daughter, to my mother-in-law.
But then when that time is filled with this tension, these negative feelings, then I feel guilty time with this shit.
And then that's like a self-talk, that open to, it's like we shouldn't be having to spend the time, having to figure out like manage an aid and figure out carecom and like how to you know, like you know, like all this stuff like we don't have time for and it's not a nice use of this precious time.
And then i feel resentful about that working together.
I would yeah, i would actually put i'm polluting this precious time with my shit.
I would put that right now up on the whiteboard Because there is so much judgment of you are the odd person out.
Everybody can live with this arrangement and I'm the one who is just fucking it up.
We would put that thought on the whiteboard to actually then actively start working on that one and thinking about how useful it is and diffusing it.
So there's a process that is called cognitive diffusion.
What's that?
This idea of taking away the strength of the words.
The impact.
Saying it in a Mickey Mouse voice.
You mean literally, literally saying it in a Mickey Mouse voice.
Literally saying it in a Mickey Mouse voice.
Not believing yourself when you say it.
Yeah.
I asked Claudia to send me a voice memo later to demonstrate.
I'm poisoning this precious time with my shit.
Claudia says the act of Brian hearing himself say this thought in the voice of a cartoon mouse.
I'm poisoning this precious time with my shit.
Can help him see it as ridiculous.
Can help him stop self-flagellating.
Because it seems like you are really trying so hard.
And your conclusion is because you're still feeling badly about it, you're not trying hard enough.
That sums it up.
Yeah.
I wish, you know, I could make this easier for you.
And I could take some of these things away.
I could tell you, yeah, I can make this easier, but I can't.
It is that hard.
Yeah, it's so hard.
And what if you were in a situation in which you actually are doing your best and have done everything you could and are doing whatever you can do?
Yeah, I feel like that's where I turn to acceptance, because it's like okay, this is just a terrible disease and a really difficult situation and somehow millions of people are going through it and still we don't have the proper approaches or supports.
There are therapies out there that could help that nobody knows about.
Um yeah, what i'm taking from this is we should probably hire you.
That's that's my takeaway here.
Yeah no, i really appreciate it.
I would love to get more info.
Uh claudia, or if you, if there are people we should reach out to here, like i, definitely.
You know We're in the middle of this and have many years ahead of us, probably in one way or another.
So I'm certainly intrigued to learn more about this process.
I think it's really important.
Thank you.
Oh, you're so welcome.
Thank you for sharing all the best to you and your family.
I really appreciate that.
Bye.
Thank you to Brian Reed for being today's guest.
And thank you to Claudia Drossel for being today's proxy.
Claudia is a psychology professor at Eastern Michigan University, where she's the director of the Center for the Advancement of Neurobehavioral Health.
After the proxy conversation, Brian and his wife did a consult with Claudia to see about working together.
But you do not have to personally reach out to get resources.
Claudia put together a list for caregivers which we'll put in our show notes.
Hi, it's Rose here again.
So that was an episode of Proxy with host Yo-Wei Shaw.
If that episode got you thinking, got you interested in proxy, you might want to listen to the episode Amanda and the Nonstop Narrator next.
Or Mike Chooses the Wrong Life.
And we also recommend checking out Brian Reed's podcast, Question Everything.
On the show.
Brian takes on big tech and spotlights journalists and regular people who are fighting back against lies, stifled speech and discontent.
You can listen and subscribe to Proxy and Question Everything wherever you get your podcasts.
And we'll fact you soon.
