Latest / Question Everything / Brian Can't Stop Fact-checking His Mother-In-Law (from “Proxy with Yowei Shaw”)

Transcript

Brian Can't Stop Fact-checking His Mother-In-Law (from “Proxy with Yowei Shaw”) · Question Everything

• 0:00
  Speaker 1: Hey, everybody. I hope you're having a good summer. I
• 0:01
  Speaker 1: know the news is a lot. Hang in there.
• 0:04
  Speaker 2: Over here at Question Everything, we're all off reporting. Well,
• 0:07
  Speaker 2: we're taking a little break, but we're mostly off reporting,
• 0:10
  Speaker 2: preparing to come back full steam with some great stories
• 0:12
  Speaker 2: for you in September, helping make sense of the news
• 0:15
  Speaker 2: and the world and how we get news about the world.
• 0:19
  Speaker 2: In the meantime, I wanted to share something kind of
• 0:21
  Speaker 2: personal with you. My friend, Yo-Wei Shaw, has a podcast
• 0:25
  Speaker 2: called Proxy. Yo-Wei's a longtime radio journalist. She used to
• 0:28
  Speaker 2: co-host the NPR show Invisibilia. She and I worked together
• 0:31
  Speaker 2: on a story years ago at This American Life. And
• 0:34
  Speaker 2: after Invisibilia got canceled in a round of NPR layoffs,
• 0:38
  Speaker 2: Yo-Wei set off on her own, started the show Proxy,
• 0:41
  Speaker 2: and gave herself a new title, Emotional Investigative Journalist. She's
• 0:46
  Speaker 2: come up with this approach to reporting where she tries
• 0:49
  Speaker 2: to help people who are going through some kind of
• 0:50
  Speaker 2: personal or emotional problem, a problem that others can relate to,
• 0:55
  Speaker 2: by setting them up with a proxy. either someone else
• 0:58
  Speaker 2: who has gone through that problem already in their own
• 1:00
  Speaker 2: life and learned something about it, or with an expert
• 1:02
  Speaker 2: on that problem who has some advice and help to share.
• 1:07
  Speaker 2: And Yo-Wei recently did this process with me. She helped
• 1:10
  Speaker 2: me with something I've been struggling with with a member
• 1:12
  Speaker 2: of my family. It was hard, it was vulnerable, and
• 1:17
  Speaker 2: it was helpful. I'm a little nervous to share it
• 1:19
  Speaker 2: with you, but maybe some of you will get something
• 1:21
  Speaker 2: out of it too. Here it is, an episode of Proxy.
• 1:27
  Speaker 3: If you had to vocalize the sound of your emotional conundrum,
• 1:30
  Speaker 3: what would it be?
• 1:34
  Speaker 1: Oh, I was just going to like scream a guttural scream.
• 1:37
  Speaker 1: That's at least what's coming to me.
• 1:39
  Speaker 3: Go for it.
• 1:39
  Speaker 1: That peaked levels here.
• 1:45
  Speaker 4: Sorry.
• 1:54
  Speaker 3: This is Proxy. I'm Yo-Ai Shaw, your emotional investigative journalist. Today,
• 2:01
  Speaker 3: the case of the reporter who can't stop back-checking his mother-in-law,
• 2:05
  Speaker 3: even though he knows she's losing her memory. That's after
• 2:09
  Speaker 3: the break. Well, hello, Brian.
• 2:37
  Speaker 4: Hi.
• 2:38
  Speaker 3: When's the last time we were on the mic together?
• 2:41
  Speaker 1: I don't think we were ever on the mic together.
• 2:42
  Speaker 1: I mean, we were around mics together.
• 2:46
  Speaker 3: This is Brian Reed, a man who hit podcasts fall
• 2:50
  Speaker 3: out of. You might have heard of his little show, S-Town,
• 2:54
  Speaker 3: or his other little show, The Trojan Horse Affair. Brian
• 2:57
  Speaker 3: now makes the podcast Question Everything, trying to make sense
• 3:01
  Speaker 3: of what the heck is going on with journalism today.
• 3:03
  Speaker 3: I met Brian when we worked together on my first
• 3:07
  Speaker 3: big story, back in 2013, an entire hour of This
• 3:10
  Speaker 3: American Life. It was this really high-stakes story about Eritrean
• 3:17
  Speaker 3: refugees trying to get to Europe, but were then taken
• 3:20
  Speaker 3: hostage by smugglers, often tortured in all sorts of horrific ways.
• 3:25
  Speaker 3: and forced to ask their families for huge amounts of ransom. I,
• 3:30
  Speaker 3: as a reporter, felt way out of my depth. But
• 3:35
  Speaker 3: I was lucky to have Brian as my producer, coaching
• 3:38
  Speaker 3: me in interviews, helping me write scripts, making sure I
• 3:42
  Speaker 3: didn't fuck up. He was patient. He made me feel safe.
• 3:47
  Speaker 3: He also made working on a decidedly not-fun story, dare
• 3:51
  Speaker 3: I say, fun at times. We'd spend all day cooped
• 3:56
  Speaker 3: up in a hotel room, listening to hostage calls. We'd
• 3:59
  Speaker 3: huddle around a laptop speaker, our translator telling us what
• 4:03
  Speaker 3: was happening, occasionally breaking down in tears, while Brian and
• 4:07
  Speaker 3: I furiously typed, trying to get down everything he said.
• 4:11
  Speaker 3: It would be hours and hours of this. But then,
• 4:18
  Speaker 3: Brian would force us to go out to a bar,
• 4:21
  Speaker 3: buy a round of beers. at us talking about our lives, joking, laughing.
• 4:27
  Speaker 3: In other words, Brian knew how to manage the vibes
• 4:31
  Speaker 3: to make sure we didn't get stuck in the heavy.
• 4:33
  Speaker 3: I didn't tell Brian any of this back then, but
• 4:37
  Speaker 3: I cherish that time together. So when I ran into
• 4:41
  Speaker 3: him at a conference last fall, I was excited to
• 4:43
  Speaker 3: catch up. He was like, what's up with you? And
• 4:48
  Speaker 3: I showed him a photo of myself pole dancing in
• 4:50
  Speaker 3: a clean Xbox costume. And told him about the show
• 4:53
  Speaker 3: I was developing. And Brian, it turned out, had been
• 4:58
  Speaker 3: struggling with a very specific problem. What some people might
• 5:02
  Speaker 3: refer to as a niche emotional conundrum. Can we start there?
• 5:07
  Speaker 3: What do you need help with, Brian?
• 5:11
  Speaker 1: I need to help figuring out how to better, more healthily....
• 5:16
  Speaker 2: And kindly interact with my mother-in-law, who lives with me
• 5:22
  Speaker 2: and my family. That's me and my wife, daughter, and
• 5:24
  Speaker 2: her in our house.
• 5:26
  Speaker 1: And she has dementia. She has Alzheimer's.
• 5:30
  Speaker 2: And I need help just figuring out how to be around,
• 5:34
  Speaker 2: you know, the symptoms of that disease.
• 5:37
  Speaker 3: When you say you need help figuring out how to be,
• 5:40
  Speaker 3: how are you being.
• 5:42
  Speaker 1: With her right now?
• 5:43
  Speaker 2: Um, The thing that is happening a lot is that
• 5:48
  Speaker 2: I find myself wanting to like correct her or fact
• 5:51
  Speaker 2: check her when she says something that isn't factual or
• 5:55
  Speaker 2: like aligned with the reality that I'm experiencing.
• 5:57
  Speaker 3: What's an example of this?
• 5:59
  Speaker 1: It's just like a million daily examples. Like I'll come
• 6:03
  Speaker 1: home and, you know, talk to my mother-in-law and she'll
• 6:05
  Speaker 1: be like, oh, nice. I haven't seen you today. And
• 6:08
  Speaker 1: it just hits me. It's like, well, that's not true.
• 6:10
  Speaker 1: Like I saw her earlier, you know?
• 6:12
  Speaker 3: Oh, my God.
• 6:15
  Speaker 2: Or like the other day, we were driving by some
• 6:16
  Speaker 2: scaffolding in a building. She was talking about like, yeah,
• 6:19
  Speaker 2: the scaffolding's been up for years.
• 6:21
  Speaker 1: And I'll just be like, that's just not true. You know,
• 6:26
  Speaker 1: that's just not true.
• 6:31
  Speaker 3: As Brian told me this, I realized, oh, wait, I
• 6:35
  Speaker 3: know that tone of voice, this side of Brian. Like,
• 6:39
  Speaker 3: even in this interview, right after we said hello, the
• 6:42
  Speaker 3: first thing he did was fact check me. When's the
• 6:45
  Speaker 3: last time we were on the mic together?
• 6:47
  Speaker 1: I don't think we were ever on the mic together.
• 6:49
  Speaker 1: I mean, we were around mics together.
• 6:52
  Speaker 3: Brian says, yeah, you know what? Maybe it is a
• 6:56
  Speaker 3: product of the work I'm doing as a journalist.
• 6:58
  Speaker 2: Yeah, I feel like my brain has kind of just
• 7:00
  Speaker 2: become wired in a way where I am just like
• 7:02
  Speaker 2: attuned to these details and whether they're true or not.
• 7:06
  Speaker 2: Even the idea of whether something's factual or not, like
• 7:08
  Speaker 2: I don't think a lot of people think that way,
• 7:10
  Speaker 2: but I do. Like the word factual comes into my
• 7:13
  Speaker 2: head a fair amount. And so then I go home
• 7:16
  Speaker 2: and find myself in this position where like my mother-in-law
• 7:19
  Speaker 2: will say something and I just I can't turn that off.
• 7:21
  Speaker 2: And I end up like correcting her or butting heads
• 7:25
  Speaker 2: with her over this disjointed reality. And she gets defensive
• 7:31
  Speaker 2: or upset or hurt. Like she doesn't want to feel
• 7:35
  Speaker 2: like a burden to me.
• 7:37
  Speaker 3: I say this with respect, but it sounds kind of
• 7:42
  Speaker 3: like you're being an asshole.
• 7:44
  Speaker 1: Yeah, no, I partly am.
• 7:46
  Speaker 2: But yeah, no, you have to understand what it's like
• 7:48
  Speaker 2: to live with someone with Alzheimer's, like in your house.
• 7:51
  Speaker 3: Yeah, which I don't. To help me understand, Brian told
• 7:54
  Speaker 3: me what just making dinner looks like on a typical evening.
• 7:58
  Speaker 3: Brian gets home from work, starts cooking. His daughter, who's four,
• 8:02
  Speaker 3: is buzzing around, taking dishes out, putting them on the floor,
• 8:06
  Speaker 3: begging him for candy. And then his mother-in-law greets him
• 8:09
  Speaker 3: in the kitchen, asks when his wife Solange, her daughter,
• 8:12
  Speaker 3: is coming home. To which Brian says, 6.30. His mother-in-law
• 8:17
  Speaker 3: goes back to the living room. Then a minute later,
• 8:21
  Speaker 3: when's Solange coming home? 6.30. Again and again. Could be
• 8:26
  Speaker 3: 15 times in a row.
• 8:28
  Speaker 1: What that is is like anxiety and paranoia, you know,
• 8:31
  Speaker 1: from the disease. You know, when are they going to
• 8:32
  Speaker 1: be home? When are they going to be home?
• 8:33
  Speaker 3: Yeah.
• 8:34
  Speaker 2: And so you try to give them something to occupy them.
• 8:37
  Speaker 2: So I'll ask for help setting the table. And that's
• 8:43
  Speaker 2: like a question about every plate or the plates will
• 8:46
  Speaker 2: be brought out and then they'll be brought back in
• 8:48
  Speaker 2: or something is put in the wrong place you know
• 8:51
  Speaker 2: and sometimes I'll have actually had an expectation of like
• 8:54
  Speaker 2: oh this will actually help me like I actually need
• 8:56
  Speaker 2: help setting the table and you kind of have to
• 8:57
  Speaker 2: relinquish that like it's harder work basically to guide someone
• 9:00
  Speaker 2: through it and then in the course of doing that
• 9:04
  Speaker 2: I'll be like oh don't forget to like grab the
• 9:06
  Speaker 2: napkins they'll be like oh where are the napkins I'll
• 9:08
  Speaker 2: be like they're in the corner and they're like no
• 9:11
  Speaker 2: I've never done this before I'm like you do it
• 9:13
  Speaker 2: every night That's not true. So it's like at the
• 9:16
  Speaker 2: end of that kind of experience is when it'll happen.
• 9:20
  Speaker 3: Brian told me, you know what? Actually, that doesn't even
• 9:23
  Speaker 3: begin to capture it because that's just dinner. To really
• 9:28
  Speaker 3: help me wrap my head around how exhausting this is
• 9:31
  Speaker 3: for him, Brian logged everything that happened one day after
• 9:34
  Speaker 3: we spoke. The email is a catalog of one situation
• 9:39
  Speaker 3: after another, any of which on their own might be tolerable.
• 9:43
  Speaker 3: But taken together without pause feels like one of those
• 9:46
  Speaker 3: Kafkaesque dreams where you keep trying to reach your goal,
• 9:49
  Speaker 3: but the obstacles keep mounting. Like Brian, his daughter, and
• 9:54
  Speaker 3: his mother-in-law drive to swim class. Brian is hoping to
• 9:58
  Speaker 3: catch up with his daughter, but his mother-in-law interrupts saying
• 10:02
  Speaker 3: i'm sorry i've never asked where we're going she asked
• 10:06
  Speaker 3: the same question six times in just 20 minutes once
• 10:10
  Speaker 3: they get to the pool there's more brian leaves his
• 10:13
  Speaker 3: mother-in-law for just a few minutes to help his daughter
• 10:15
  Speaker 3: change and when he gets back she's already wandered off
• 10:18
  Speaker 3: worried they left her He manages to corral everyone to
• 10:22
  Speaker 3: the car to run an errand, grab dinner. But then
• 10:25
  Speaker 3: his daughter drops some glitter markers in a sewer grate
• 10:28
  Speaker 3: and loses her shit. So now she's crying on the
• 10:31
  Speaker 3: drive home. And through it all, his mother-in-law keeps asking
• 10:35
  Speaker 3: him if Solange is back in town. Brian says, yes,
• 10:39
  Speaker 3: she got home last night. They reach their street. She
• 10:43
  Speaker 3: asks again, is Solange back in town? Brian is trying
• 10:46
  Speaker 3: to parallel park. And she asks again, is Solange back
• 10:49
  Speaker 3: in town? Later that night, the house is finally quiet,
• 10:53
  Speaker 3: his mother-in-law in bed downstairs. Brian is up late writing
• 10:57
  Speaker 3: a script, behind on deadline. And then suddenly, she appears.
• 11:02
  Speaker 3: He writes, she said she had a text message saying
• 11:04
  Speaker 3: there was food for her in the kitchen. That's why
• 11:07
  Speaker 3: she came up. She got very upset, started yelling. I
• 11:11
  Speaker 3: looked at her phone. She was reading text messages from
• 11:13
  Speaker 3: a year ago about groceries being delivered. Brian redirects her
• 11:18
  Speaker 3: to bed. She'll soon be back.
• 11:21
  Speaker 2: You know, like the famous book about Alzheimer's is The
• 11:24
  Speaker 2: 36-Hour Day, is what it's called.
• 11:26
  Speaker 1: And that is right, like every day.
• 11:30
  Speaker 3: What makes it even more maddening is that Brian had
• 11:33
  Speaker 3: always enjoyed spending time with his mother-in-law. Long before the diagnosis,
• 11:39
  Speaker 3: Brian and his wife had actually been trying to convince
• 11:41
  Speaker 3: her to move in with them. To help with childcare, sure,
• 11:46
  Speaker 3: but also just to hang out more. In his words,
• 11:49
  Speaker 3: she's a badass.
• 11:50
  Speaker 1: She was a physician. Um, very interesting woman, you know,
• 11:55
  Speaker 1: who was like the first in her family to go
• 11:56
  Speaker 1: to college and, uh, became a doctor. And she would
• 11:59
  Speaker 1: tell me about things she was reading that I was
• 12:00
  Speaker 1: always like, Oh yeah, I didn't know you were like
• 12:01
  Speaker 1: interested in like Vietnamese history or, and it was just,
• 12:05
  Speaker 1: you know, just like very voracious reader, see her movies.
• 12:08
  Speaker 3: Yeah.
• 12:09
  Speaker 1: Really into art.
• 12:10
  Speaker 2: My mother-in-law was incredibly intelligent and smart and funny. And
• 12:15
  Speaker 2: she still has all those things, but she's losing those faculties,
• 12:18
  Speaker 2: you know, and that's, there's grief there. So, When she
• 12:22
  Speaker 2: says something that's just not true, those things end up
• 12:24
  Speaker 2: triggering the deeper feelings.
• 12:29
  Speaker 3: Brian says even with her Alzheimer's, his mother-in-law can still
• 12:33
  Speaker 3: be really present at times, aware of what's happening. And
• 12:36
  Speaker 3: so sometimes even when he manages to bite his tongue
• 12:40
  Speaker 3: and not correct her, his mother-in-law will see his thoughts
• 12:43
  Speaker 3: on his face and she'll call him out on it.
• 12:46
  Speaker 2: She'll say like, hey, stop frowning. Like, you have such
• 12:48
  Speaker 2: a nice face. Is it going to get stuck that way?
• 12:51
  Speaker 2: Or like, There have been a couple times.
• 12:53
  Speaker 1: When we've been arguing and my mother-in-law says, like, let's
• 12:57
  Speaker 1: just pause. She'll just, like, grab my hand.
• 12:59
  Speaker 3: Wow.
• 13:00
  Speaker 1: You know, and she's someone who's taken care of people
• 13:02
  Speaker 1: her whole life. And she'll acknowledge that and be like,
• 13:04
  Speaker 1: I've had to do this too. And I'm so appreciative
• 13:07
  Speaker 1: for all that you do. And one of the things
• 13:10
  Speaker 1: this disease makes you very aware of is that, you know,
• 13:12
  Speaker 1: just the value of time. It's a progressive disease that
• 13:18
  Speaker 1: goes in one direction. And I do feel... really bad
• 13:23
  Speaker 1: when I'm spending time kind of arguing over these things
• 13:26
  Speaker 1: because it feels like it's poisoning the time we have.
• 13:38
  Speaker 3: Brian has been dealing with this for three years now.
• 13:42
  Speaker 3: He goes to therapy. He gets help from a social worker.
• 13:45
  Speaker 3: He reads books. He goes to support groups. But even so,
• 13:50
  Speaker 3: he needs help figuring out how to not be so
• 13:52
  Speaker 3: frustrated with his mother-in-law? He doesn't want to spoil the
• 13:56
  Speaker 3: precious time he and his family have left with her.
• 14:00
  Speaker 3: And this is why Brian came to us.
• 14:03
  Speaker 2: I think ultimately it comes down to like a matter
• 14:05
  Speaker 2: of acceptance too, you know? I think with every correction
• 14:09
  Speaker 2: or fact check that I'm doing, it's just a little
• 14:12
  Speaker 2: bit of like, I don't want this to be true.
• 14:15
  Speaker 1: I don't want my mother to want to have this.
• 14:17
  Speaker 2: You know, it's like me swatting the disease away. But
• 14:20
  Speaker 2: it ends up being directed at her, rather than the
• 14:23
  Speaker 2: kind of radical acceptance you need to have with a
• 14:28
  Speaker 2: diagnosis like this.
• 14:32
  Speaker 3: I'm really sorry that you are dealing with this, and
• 14:37
  Speaker 3: I'm going to try to find a proxy that maybe
• 14:40
  Speaker 3: can help. All right.
• 14:41
  Speaker 1: Let me know what you find. I'll be curious.
• 14:51
  Speaker 3: After the break, somebody who gets it. The day of
• 15:15
  Speaker 3: the proxy conversation.
• 15:16
  Speaker 1: Hello, hello.
• 15:17
  Speaker 3: Ryan seems surprisingly sunny on the video call.
• 15:20
  Speaker 2: I just went on vacation. We went with just my
• 15:23
  Speaker 2: wife and my daughter. So we were relieved of dementia
• 15:27
  Speaker 2: caretaking duties for a week.
• 15:28
  Speaker 3: You seem refreshed. I couldn't help but notice Brian was
• 15:33
  Speaker 3: smiling more.
• 15:33
  Speaker 2: I actually turned my phone off. I read two novels,
• 15:36
  Speaker 2: which I can't remember the last time I did that.
• 15:38
  Speaker 3: Of course, now he was back to real life. Back
• 15:41
  Speaker 3: to all of life's problems. I just got a notification
• 15:45
  Speaker 3: that the proxy's here.
• 15:46
  Speaker 1: Okay. All right, let's do it.
• 15:48
  Speaker 4: Okay.
• 15:48
  Speaker 3: You ready?
• 15:49
  Speaker 4: Mm-hmm.
• 15:50
  Speaker 3: So, the proxy. As I was looking for a proxy
• 15:55
  Speaker 3: for Brian, I thought about something he told me. How
• 15:59
  Speaker 3: on the surface, the problem was that he couldn't stop
• 16:02
  Speaker 3: correcting his mother-in-law. But deeper down, it was probably his
• 16:06
  Speaker 3: way of responding to the disease and the pain and
• 16:09
  Speaker 3: terror it was inflicting. Brian said he probably needed to
• 16:14
  Speaker 3: just learn how to accept the situation. But how? He
• 16:18
  Speaker 3: didn't know. So, the proxy team started poking around the
• 16:22
  Speaker 3: research on acceptance. And we discovered something that seemed almost
• 16:26
  Speaker 3: too on the nose. Something called acceptance and commitment therapy,
• 16:32
  Speaker 3: or ACT, a type of cognitive behavioral therapy. I reached
• 16:36
  Speaker 3: out to Stephen C. Hayes, the person who created ACT.
• 16:40
  Speaker 3: And he was like, sure, I could talk. But you
• 16:44
  Speaker 3: know who would even be better? I know someone who
• 16:47
  Speaker 3: uses this therapy specifically with caregivers of people with neurocognitive disorders.
• 16:53
  Speaker 3: People just like Brian. This is how I found Claudia.
• 17:00
  Speaker 4: Hi, Brian.
• 17:01
  Speaker 1: Hi, Claudia. How are you? I don't know who you
• 17:03
  Speaker 1: are or anything about you. Who are you?
• 17:08
  Speaker 4: I'm here at Eastern Michigan University. where I'm an associate professor.
• 17:13
  Speaker 3: Okay. Claudia Dressel is a psychologist who helps people with
• 17:17
  Speaker 3: a neurodegenerative disease and their caregivers figure out how to
• 17:21
  Speaker 3: make life easier and healthier for everyone involved.
• 17:24
  Speaker 4: I train people. I do research in that area. And
• 17:29
  Speaker 4: for over 20 years, I have worked with families where
• 17:34
  Speaker 4: one person has cognitive decline. I kind of want to
• 17:37
  Speaker 4: tell my origin story here too.
• 17:39
  Speaker 1: I'd love to hear that.
• 17:40
  Speaker 4: Yeah.
• 17:41
  Speaker 3: When Claudia was in grad school, she actually had no
• 17:43
  Speaker 3: plans to work in dementia care. She wanted to teach
• 17:46
  Speaker 3: psychology at a university. But then one day, a friend
• 17:49
  Speaker 3: from school asked for a favor. Could Claudia come to
• 17:53
  Speaker 3: a senior center and sit with a man who has
• 17:55
  Speaker 3: Alzheimer's while she met with his caregiver?
• 17:58
  Speaker 4: And she told me that I didn't need to do much,
• 18:01
  Speaker 4: that the person with a neurodegenerative disease had basically stopped speaking.
• 18:06
  Speaker 4: And I come from a little village in Germany. You
• 18:09
  Speaker 4: hear my accent. And I had always lived with my
• 18:13
  Speaker 4: grandparents and many of my peers also really had close
• 18:17
  Speaker 4: ties with their grandparents. So I had seen older adults
• 18:21
  Speaker 4: of all ability levels, really. And I thought, you know,
• 18:25
  Speaker 4: I can do this. I can be in the senior
• 18:26
  Speaker 4: center and sit with this person. And while we were
• 18:29
  Speaker 4: sitting there, somebody switched on music and a boombox. They
• 18:33
  Speaker 4: started line dancing. And suddenly I hear this voice next
• 18:36
  Speaker 4: to me that says, this is all a bunch of crap.
• 18:41
  Speaker 4: And I thought, wow, you know, he can he can speak.
• 18:45
  Speaker 4: And I took him into a quiet area and he
• 18:49
  Speaker 4: told me a lot about his life.
• 18:52
  Speaker 3: The man told Claudia about his kids, how he used
• 18:55
  Speaker 3: to work at a department store. He talked a lot,
• 18:58
  Speaker 3: if not always clearly, but she was able to figure
• 19:01
  Speaker 3: out what he was saying.
• 19:03
  Speaker 4: And I thought this was quite amazing because he was
• 19:05
  Speaker 4: somebody who was described to me as nonverbal and hardly speaking.
• 19:11
  Speaker 4: And so ever since then, really, I've worked with people
• 19:15
  Speaker 4: with cognitive impairment to try to find out how to
• 19:18
  Speaker 4: best support them and their caregivers in terms of communication
• 19:21
  Speaker 4: and relationships. The question is, what is so difficult about
• 19:25
  Speaker 4: it and how can we remove the barriers? And perhaps if...
• 19:30
  Speaker 4: not making it necessarily easier, perhaps even make it more predictable.
• 19:36
  Speaker 2: Is that the best you can hope for? Is it
• 19:38
  Speaker 2: more predictable or is there some higher goal you can have?
• 19:42
  Speaker 4: What I hope for is that when people live together,
• 19:45
  Speaker 4: that they can really make their life work together.
• 19:48
  Speaker 3: Claudia's goal is to not just stop problematic behaviors. She's
• 19:52
  Speaker 3: focused on holistically helping both caregivers and the care recipient
• 19:57
  Speaker 3: have a nicer time together. Ryan, of course, is nowhere
• 20:01
  Speaker 3: near that. So I asked him to give the rundown
• 20:04
  Speaker 3: of a situation. How he can't stop correcting his mother-in-law.
• 20:08
  Speaker 1: And that was leading to just a ton of tension, upset, strife.
• 20:13
  Speaker 3: How even when he does try to get help, some
• 20:15
  Speaker 3: of the resources just make him angrier. He talked about
• 20:19
  Speaker 3: watching this one webinar in a support group that particularly
• 20:22
  Speaker 3: pissed him off. The webinar presented a bunch of scenarios
• 20:27
  Speaker 3: of what someone with Alzheimer's might do and asked how
• 20:30
  Speaker 3: the caregiver should respond.
• 20:31
  Speaker 2: One of them was like, Your loved one keeps going
• 20:34
  Speaker 2: to the door and checking whether it's locked.
• 20:37
  Speaker 1: Is this a problem or not?
• 20:38
  Speaker 3: This might be annoying, but it's not harmful to your
• 20:41
  Speaker 3: husband or anyone else.
• 20:43
  Speaker 1: And it was like just one thing after another like that.
• 20:45
  Speaker 3: Problem two.
• 20:46
  Speaker 2: And I remember my experience like in the group after
• 20:49
  Speaker 2: watching this was just the tone, delivery, and presentation of
• 20:58
  Speaker 2: that exercise, of that like webinar was.
• 21:02
  Speaker 3: So....
• 21:03
  Speaker 2: At odds with my experience of this. It was just
• 21:06
  Speaker 2: so like common. This is not a problem. Let them
• 21:09
  Speaker 2: check the door if it's locked and then just go
• 21:11
  Speaker 2: up as the caregiver and make sure the door's locked
• 21:12
  Speaker 2: and it's fine. This is not actually a problem. They
• 21:15
  Speaker 2: can check the door if they want. You don't need
• 21:16
  Speaker 2: to get up in arms about it.
• 21:17
  Speaker 3: It might be annoying, but it's not a serious problem
• 21:20
  Speaker 3: for anyone.
• 21:21
  Speaker 2: And in my head, I'm just like, yeah, this happens
• 21:23
  Speaker 2: in my house. I will spend an hour and a
• 21:26
  Speaker 2: half of my evening doing that. Like, that's not not
• 21:30
  Speaker 2: a problem to me.
• 21:31
  Speaker 3: I don't know.
• 21:31
  Speaker 2: I don't know if that's just me being self-centered, but
• 21:34
  Speaker 2: I would not say that's not a problem. I would
• 21:36
  Speaker 2: say it's not a problem if I'm willing to make
• 21:39
  Speaker 2: like a huge sacrifice.
• 21:41
  Speaker 1: Even just like this influencer that I follow.
• 21:45
  Speaker 3: Hold on.
• 21:46
  Speaker 1: Give me one second.
• 21:47
  Speaker 3: Ryan holds up his phone to show us a video
• 21:49
  Speaker 3: from Instagram. The caregiver is looking into the camera with
• 21:54
  Speaker 3: a knowing look on her face. And hits the camera
• 21:56
  Speaker 3: in time to the beat of the song with the caption,
• 21:59
  Speaker 3: stop correcting them.
• 22:01
  Speaker 1: And I'm just like, easier said than done. I don't know. Like,
• 22:07
  Speaker 1: what are you talking about? Yeah, duh. I don't know.
• 22:09
  Speaker 2: So I actually commented on this. I was like, was
• 22:11
  Speaker 2: this easy for you to acclimate to? I find this
• 22:13
  Speaker 2: much easier said than done. And she wrote back like,
• 22:16
  Speaker 2: it's not easy. Take it moment by moment.
• 22:18
  Speaker 3: Yeah.
• 22:20
  Speaker 1: But it doesn't, I don't know, it just doesn't match
• 22:22
  Speaker 1: my experience of it, which is this is fucking crazy.
• 22:25
  Speaker 1: You're saying the same thing 40 times. How can I
• 22:27
  Speaker 1: live like this?
• 22:29
  Speaker 4: I mean, this is your experience and there is no
• 22:33
  Speaker 4: arguing with that experience. I think, Brian, you give voice
• 22:38
  Speaker 4: to what a lot of people are feeling. And I
• 22:42
  Speaker 4: know that a lot of people are also exasperated because
• 22:45
  Speaker 4: they feel as if there is a competition to be
• 22:49
  Speaker 4: kind of a good caregiver without having these kinds of
• 22:54
  Speaker 4: feelings i'm just curious with brian yeah would it help
• 23:00
  Speaker 4: if you found other people who also are angry.
• 23:07
  Speaker 2: I can't say for sure but it would certainly feel
• 23:10
  Speaker 2: different i can't remember a time where i've heard someone
• 23:14
  Speaker 2: express their experience and i've been like that's exactly.
• 23:17
  Speaker 4: How i feel So you're feeling alone with this.
• 23:20
  Speaker 3: Yeah.
• 23:21
  Speaker 2: And I think, you know, my wife and I are
• 23:22
  Speaker 2: going through it together, but her experience of it is
• 23:24
  Speaker 2: quite different. I mean, she's angry in her own ways
• 23:25
  Speaker 2: and in ways much more.
• 23:26
  Speaker 1: Acute for her.
• 23:27
  Speaker 2: I mean, she's incredibly close to her mom, which both
• 23:31
  Speaker 2: makes the pain of it all that much worse. But
• 23:35
  Speaker 2: she had an incredibly good relationship and they really do
• 23:37
  Speaker 2: have that to rely on. We had a good relationship,
• 23:41
  Speaker 2: my mother-in-law and I, but she's my mother-in-law. It's not
• 23:44
  Speaker 2: the same, you know.
• 23:45
  Speaker 1: And so our experience isn't the same. So I feel
• 23:47
  Speaker 1: like I'm often holding a lot of anger and frustration
• 23:51
  Speaker 1: with the experience in the house. Yeah, I think I've
• 23:54
  Speaker 1: vacillated feeling like I just must feel this differently than
• 23:57
  Speaker 1: other people and it feels very lonely. Or other times,
• 24:01
  Speaker 1: I do feel like I know other people are feeling
• 24:03
  Speaker 1: this and nobody's being honest about this.
• 24:05
  Speaker 2: And I feel like that's the big fact check here, frankly.
• 24:08
  Speaker 2: This is the webinar that's created to help caregivers. This
• 24:11
  Speaker 2: feels dishonest. It feels emotionally dishonest for what this experience
• 24:16
  Speaker 2: is actually like.
• 24:18
  Speaker 4: And noticing that different caregivers come from different kinds of perspectives, right?
• 24:25
  Speaker 4: So I think, to tell you quite the truth, I
• 24:29
  Speaker 4: think that to some extent, at least, the expression is gendered,
• 24:38
  Speaker 4: meaning more men are willing to talk about this being
• 24:44
  Speaker 4: just really, really brutal and also infuriating. I think there
• 24:50
  Speaker 4: is less acceptance, less welcoming for women who express similar
• 24:56
  Speaker 4: kinds of things.
• 24:58
  Speaker 2: Yeah, I think that's definitely true. But Claudia, you say
• 25:01
  Speaker 2: they're out there? Other people feel this way? Or am
• 25:05
  Speaker 2: I one.
• 25:05
  Speaker 3: Of a kind?
• 25:06
  Speaker 4: I am saying that they're out there, lots of them.
• 25:09
  Speaker 4: I mean, I can quote some people who just say, you.
• 25:12
  Speaker 1: Know, What do you got?
• 25:15
  Speaker 4: We're totally fucked. Either we are going to be the
• 25:18
  Speaker 4: person who is giving the care or the person who
• 25:21
  Speaker 4: is receiving the care. And that's what our life is
• 25:24
  Speaker 4: going to look like. And nothing else can make that better.
• 25:29
  Speaker 1: You got more?
• 25:32
  Speaker 4: Those kinds of things.
• 25:33
  Speaker 3: Lots of them.
• 25:37
  Speaker 4: Lots of people who are very angry because it also
• 25:40
  Speaker 4: doesn't seem to be fair. And so fairness also comes
• 25:44
  Speaker 4: up as one of those things, as you expected your
• 25:48
  Speaker 4: life to be just different.
• 25:50
  Speaker 3: Yeah.
• 25:52
  Speaker 4: And you didn't have to think about how to adjust
• 25:55
  Speaker 4: your life in these different ways that, like Brian said,
• 26:01
  Speaker 4: are sometimes quite ridiculous. Yeah. It's almost as if there
• 26:07
  Speaker 4: is this secret within our society that that a lot
• 26:11
  Speaker 4: of people will be affected by cognitive decline. Nobody really
• 26:17
  Speaker 4: acknowledges it. Nobody prepares you for it. But then when
• 26:22
  Speaker 4: you find yourself in the situation, everybody says to you, well,
• 26:27
  Speaker 4: if you just did X, Y, and Z, then it
• 26:30
  Speaker 4: would be okay. And everything rebels against the if only,
• 26:36
  Speaker 4: because you know that That is not true. It's not
• 26:39
  Speaker 4: like if only one thing. It's a whole rearrangement of
• 26:42
  Speaker 4: your life that is happening. When you think about it,
• 26:46
  Speaker 4: it's almost like a murder has been committed. And there
• 26:53
  Speaker 4: is kind of no corpse. And you are the one
• 26:57
  Speaker 4: who is saying, can't anybody see just how incredibly fucked
• 27:03
  Speaker 4: up this is? Right.
• 27:06
  Speaker 2: And so then when I'm not getting that acknowledgement, the
• 27:09
  Speaker 2: way that frustration is manifesting is in my interactions with
• 27:13
  Speaker 2: my mother-in-law taking it out there.
• 27:16
  Speaker 3: Yes. When we return, Claudia tells Brian about the tools
• 27:30
  Speaker 3: he can use to help him stop venting at his mother-in-law.
• 27:51
  Speaker 3: So Brian is feeling lots of shitty emotions. He's feeling angry.
• 27:56
  Speaker 3: He's feeling frustrated, sad. This turns out to be the
• 27:59
  Speaker 3: way a lot of dementia caregivers feel. Way higher levels
• 28:03
  Speaker 3: of depression, anxiety, and stress than the rest of us.
• 28:07
  Speaker 3: And because we're talking about nearly 12 million Americans who,
• 28:10
  Speaker 3: like Brian, are providing unpaid care to a loved one
• 28:13
  Speaker 3: in this way, that's a huge steaming pile of shitty feelings.
• 28:18
  Speaker 3: shitty feelings that are affecting everyone involved. Researchers have found
• 28:23
  Speaker 3: that these stressed-out caregivers tend to skip doctor's appointments, not
• 28:27
  Speaker 3: take breaks, not exercise, not see friends. But here's the thing.
• 28:33
  Speaker 3: The more caregivers neglect their own well-being and the more
• 28:36
  Speaker 3: they become distressed, the worse the people they're caring for
• 28:39
  Speaker 3: tend to do. They're more likely to have worse symptoms
• 28:43
  Speaker 3: of dementia, more likely to end up in the hospital,
• 28:46
  Speaker 3: even more likely to be abused. It's this terrible irony.
• 28:51
  Speaker 3: The more a caregiver gives up of their life to
• 28:53
  Speaker 3: care for the person they love, the more the care
• 28:56
  Speaker 3: they're giving can suffer. So what to do with all
• 29:01
  Speaker 3: these shitty feelings? And how can Brian stop taking out
• 29:04
  Speaker 3: his frustration on his mother-in-law? Claudia says typically, we feel
• 29:10
  Speaker 3: a bad feeling and we want to get rid of it.
• 29:13
  Speaker 3: Maybe go to yoga, start boxing. The point is to
• 29:16
  Speaker 3: purge the bad feeling. So you can be a better
• 29:19
  Speaker 3: caregiver who doesn't snap at your confused mother-in-law. But Claudia
• 29:25
  Speaker 3: says that's just temporary. Because you can't really get rid
• 29:29
  Speaker 3: of a feeling if you don't change the situation. And
• 29:32
  Speaker 3: if you bat away the feeling without trying to understand it, like, no, no, no, no, no.
• 29:37
  Speaker 3: Those are your clues. Claudia wants caregivers to sit with
• 29:42
  Speaker 3: and feel all the feelings, even the bad ones, so
• 29:46
  Speaker 3: together they can observe and trace the steps that led
• 29:50
  Speaker 3: to them, to try to solve the mystery of why
• 29:53
  Speaker 3: they're stuck, why the entire family might be. When Claudia
• 29:58
  Speaker 3: talked about her process, it really does sound like she's
• 30:01
  Speaker 3: an emotional detective. She visits the homes of her clients.
• 30:06
  Speaker 3: She'll interview the caregiver at great length, gathering all of
• 30:09
  Speaker 3: their negative feelings, the expectations they're trapped by, the situations
• 30:14
  Speaker 3: that make them upset, and the ripples of that upset.
• 30:17
  Speaker 3: And then she'll gather their positive feelings, their hopes, their dreams,
• 30:21
  Speaker 3: the moments they feel most connected. She'll pull their medical records.
• 30:25
  Speaker 3: She'll find out how much support they have. The things
• 30:28
  Speaker 3: they're good at, the things they're bad at. Just an
• 30:31
  Speaker 3: unbelievably detailed profile of the person and their context. And
• 30:35
  Speaker 3: then she does that again with the person with Alzheimer's.
• 30:39
  Speaker 3: Then the wife. Then the child. Meanwhile, Claudia is observing
• 30:45
  Speaker 3: and recording all interactions on video to analyze later to
• 30:48
  Speaker 3: look for patterns. Then with the caregiver, she'll throw the
• 30:52
  Speaker 3: most salient factors on a whiteboard. Kind of like a
• 30:55
  Speaker 3: corkboard in a police precinct. but more touchy-feely. No dead bodies.
• 31:00
  Speaker 3: This is the family's map. It shows all the invisible
• 31:04
  Speaker 3: forces shaping the situation. Claudia showed me one of these maps.
• 31:09
  Speaker 3: It's broken up into different sections. There's one for the caregiver,
• 31:13
  Speaker 3: let's call her Sally, another for Sally's dad, who has dementia,
• 31:17
  Speaker 3: one for Sally's mom, who has trouble getting around. In
• 31:20
  Speaker 3: each of these sections, there are a bunch of different
• 31:23
  Speaker 3: shapes filled with text. The diamonds are the things that
• 31:27
  Speaker 3: can't be changed. Like for Sally, it says, sudden death
• 31:30
  Speaker 3: of husband. And then the circles, these represent the things
• 31:34
  Speaker 3: that can be addressed, maybe in therapy. For instance, Sally
• 31:39
  Speaker 3: feeling like she's the only one, that everyone has to
• 31:42
  Speaker 3: rely on her, when in fact there are other family
• 31:45
  Speaker 3: members who could step up. Finally, the squares. These are
• 31:50
  Speaker 3: the potential effects of this challenging situation. For example, that
• 31:54
  Speaker 3: Sally is burned out or that her mom feels guilty
• 31:58
  Speaker 3: about not being able to care for her husband. Claudia
• 32:01
  Speaker 3: and Sally will constantly return to this map, updating it
• 32:06
  Speaker 3: and seeing what they can try to change to improve
• 32:09
  Speaker 3: the situation. It's a lot of information and the process
• 32:14
  Speaker 3: can take months, even years, and really only scratching the surface.
• 32:19
  Speaker 3: But these are the first steps of acceptance and commitment therapy.
• 32:23
  Speaker 3: Claudia's version of it. And Claudia says early studies of
• 32:27
  Speaker 3: this therapy have been promising. They're showing it can actually
• 32:31
  Speaker 3: help with dementia, caregiver burnout, and depression.
• 32:35
  Speaker 1: How long has this been around?
• 32:36
  Speaker 4: It's been around since 1998. I just don't understand.
• 32:39
  Speaker 2: How have I never heard of it? Like, I'm in these,
• 32:41
  Speaker 2: I'm having meetings with people and social workers. I've just never,
• 32:45
  Speaker 2: you know, I don't know.
• 32:46
  Speaker 4: The reason you haven't heard of it is because it
• 32:48
  Speaker 4: comes from clinical psychology. Yeah. And sometimes the fields are
• 32:51
  Speaker 4: so different.
• 32:52
  Speaker 1: Mm-hmm.
• 32:53
  Speaker 4: That it takes a while for things that come from
• 32:56
  Speaker 4: clinical psychology to go into this other context, which is
• 33:00
  Speaker 4: the geropsychology context.
• 33:02
  Speaker 3: Oh, interesting.
• 33:03
  Speaker 1: It's like balkanized.
• 33:05
  Speaker 3: Claudia walks us through how ACT could help Brian. She
• 33:08
  Speaker 3: says a lot of the time caregivers can get stuck
• 33:11
  Speaker 3: in a specific situation because there's some feeling they have
• 33:16
  Speaker 3: that they don't pause to investigate. They're just reacting. And
• 33:20
  Speaker 3: It can prevent them from implementing a possibly really obvious fix.
• 33:25
  Speaker 4: Imagine somebody has a really hard time knowing where things
• 33:30
  Speaker 4: go in the kitchen. That's a very typical one. And
• 33:34
  Speaker 4: what I see caregivers do is they label, often they
• 33:37
  Speaker 4: label cupboards with Post-its.
• 33:39
  Speaker 1: Yeah, we've done that.
• 33:39
  Speaker 4: And it actually turns out that does not work.
• 33:41
  Speaker 3: Yeah.
• 33:42
  Speaker 4: Most of the time, those kinds of things, they don't
• 33:45
  Speaker 4: work for the person because they might not benefit from
• 33:48
  Speaker 4: any kind of reminders or cuing at all. So then
• 33:53
  Speaker 4: the next step would be if you still want the
• 33:55
  Speaker 4: person to be somewhat active in the kitchen, let's say
• 33:58
  Speaker 4: they are supposed to get a cup and reheat their
• 34:01
  Speaker 4: coffee still in the microwave in the morning. And a
• 34:04
  Speaker 4: caregiver might say, well, under no circumstances am I going
• 34:08
  Speaker 4: to take off my cupboard door.
• 34:10
  Speaker 3: Not wanting to take off the cupboard door could sound
• 34:12
  Speaker 3: like a small thing. Just setting a tiny boundary. But
• 34:16
  Speaker 3: Claudia says behind it is this voice yelling, this is unfair.
• 34:20
  Speaker 3: This is ridiculous. And so the first thing is to
• 34:24
  Speaker 3: simply accept, this is how I'm feeling.
• 34:26
  Speaker 4: That kind of acknowledgement, that in itself might create some
• 34:30
  Speaker 4: space and some relief. So the more we argue with
• 34:34
  Speaker 4: the feeling, the harder it is going to be to
• 34:37
  Speaker 4: do what is effective.
• 34:39
  Speaker 3: Next up, deciding whether it's necessary to act on feelings
• 34:43
  Speaker 3: that come up. Like that one about the kitchen cupboard.
• 34:47
  Speaker 3: Do these feelings help solve the problem? Or do they
• 34:50
  Speaker 3: just make me more miserable?
• 34:51
  Speaker 4: It makes sense that they come up. And they're not
• 34:54
  Speaker 4: very useful. Both things can be true at the same time.
• 34:58
  Speaker 1: So I hear the acceptance part. What's the commitment part?
• 35:01
  Speaker 4: The commitment part is really thinking about what would I
• 35:04
  Speaker 4: really like to have happen? And how can we help
• 35:08
  Speaker 4: you go into the direction that will work for you
• 35:12
  Speaker 4: and your family in the long term?
• 35:14
  Speaker 3: Claudia means over everything else. What's most important? Is it
• 35:19
  Speaker 3: to enjoy the time you have left with your loved
• 35:21
  Speaker 3: one who has Alzheimer's? Is it to give your kids
• 35:24
  Speaker 3: a stress-free home? And how do you work toward that
• 35:28
  Speaker 3: without getting tangled in feelings like shame and resentment?
• 35:31
  Speaker 4: For example, I've worked with families who have promised their
• 35:35
  Speaker 4: father on his deathbed that they will take care of mom.
• 35:40
  Speaker 4: And what they found out is that mom was much
• 35:43
  Speaker 4: more impaired than they had bargained for. And they tried
• 35:47
  Speaker 4: to have her live independently in her home and then
• 35:50
  Speaker 4: take shifts. Those were five siblings. And within a few weeks,
• 35:55
  Speaker 4: it all had fallen apart. It was really untenable. And
• 35:59
  Speaker 4: so it's really the thinking about the ideal situation, the
• 36:04
  Speaker 4: practicalities of caregiving, how they really intersect with your life.
• 36:10
  Speaker 4: Thinking about the four-year-old, you know?
• 36:12
  Speaker 3: Yeah. Because.
• 36:14
  Speaker 4: you are also a sandwich caregiver.
• 36:16
  Speaker 3: Yeah. Yeah.
• 36:18
  Speaker 4: And so the commitment part is the work of actually
• 36:22
  Speaker 4: figuring out not only what you ideally would like in
• 36:27
  Speaker 4: terms of your relationship, for example, with your mother-in-law, but
• 36:31
  Speaker 4: also what practically you could do in terms of steps
• 36:36
  Speaker 4: to move into that direction.
• 36:38
  Speaker 1: So yeah, walk me through that. How does this apply?
• 36:41
  Speaker 2: Because, um, There's been a stretch recently of my mother-in-law,
• 36:46
  Speaker 2: I guess, getting up in the middle of the night
• 36:48
  Speaker 2: and opening her door and setting off the alarm.
• 36:51
  Speaker 1: So we're being woken up.
• 36:53
  Speaker 2: Two or three times a night and my wife's having
• 36:55
  Speaker 2: to go down there and kind of settle her down. Generally,
• 36:58
  Speaker 2: my wife puts her mom to bed, but sometimes her job,
• 37:02
  Speaker 2: she has to work at night a lot or be
• 37:03
  Speaker 2: out at night. So that time will kind of fall
• 37:07
  Speaker 2: to me and kind of the Like, we'd done problem solving.
• 37:11
  Speaker 1: This is credit to Solange, to my wife. Like, she's
• 37:14
  Speaker 1: figured out.
• 37:14
  Speaker 2: Like, okay, if I really kind of make, like, a
• 37:18
  Speaker 2: routine around bedtime, it's, like, clear that my mother-in-law's going
• 37:22
  Speaker 2: to bed. She kind of tucks her in, turns the
• 37:25
  Speaker 2: lights off in a certain way, shows her that the
• 37:26
  Speaker 2: door's locked. That has seemed to, like, make it better
• 37:29
  Speaker 2: that she's, like, not getting up in the middle of
• 37:31
  Speaker 2: the night and opening the door and setting off the
• 37:32
  Speaker 2: alarm and waking us up over and over and over again.
• 37:36
  Speaker 2: So I tried to implement that when I was home
• 37:38
  Speaker 2: alone with her. And, you know, I go to turn
• 37:43
  Speaker 2: off the light. And my mother-in-law is like, no, no, no,
• 37:45
  Speaker 2: leave the light on. And I'm like, no, it's really
• 37:47
  Speaker 2: important to kind of turn off the light so that
• 37:50
  Speaker 2: we know it's bedtime. No, no, no, leave the light on.
• 37:54
  Speaker 2: And just like, you know, fighting with me with it
• 37:56
  Speaker 2: and like won't get ready for bed. Just leave the
• 37:58
  Speaker 2: light on. And I know that if like this doesn't happen,
• 38:01
  Speaker 2: like we're probably going to be up a punch that night,
• 38:03
  Speaker 2: you know, or she could walk out the door.
• 38:05
  Speaker 1: Like, I don't know. You know what I mean?
• 38:06
  Speaker 4: It becomes urgent for you almost.
• 38:08
  Speaker 3: Yeah. Yeah.
• 38:08
  Speaker 2: And so then I try to explain to her, like, listen,
• 38:10
  Speaker 2: like I'm doing this because the last few nights, like
• 38:14
  Speaker 2: you've gotten up several times in the middle of the
• 38:16
  Speaker 2: night and woken us up or the alarm company was called.
• 38:20
  Speaker 2: And so we found that it helps. Like if you
• 38:21
  Speaker 2: turn off the light, she's like, that didn't happen. I'm like, yes,
• 38:23
  Speaker 2: it did happen. This is happening. It's happened like seven
• 38:27
  Speaker 2: times in the last week. And I get activated like that.
• 38:30
  Speaker 2: I'm like, you're denying this like incredibly present, exhausting reality.
• 38:36
  Speaker 2: And I'm trying to stop it. And you won't let
• 38:38
  Speaker 2: me just, you won't just trust me that this will
• 38:40
  Speaker 2: help us all, you know?
• 38:41
  Speaker 4: And you'll find yourself explaining over and over again.
• 38:47
  Speaker 3: Yeah.
• 38:48
  Speaker 2: And I think the self-talk there is just like, I'm
• 38:50
  Speaker 2: already kind of frustrated in those situations. Because I'm like,
• 38:52
  Speaker 2: we were up three times last night.
• 38:53
  Speaker 1: I'm exhausted.
• 38:55
  Speaker 3: You know?
• 38:56
  Speaker 1: And like, it shouldn't be this way. Like, I don't
• 38:58
  Speaker 1: want to do this. Like, I don't want to live
• 39:00
  Speaker 1: this way. Like, this requires a professional.
• 39:04
  Speaker 3: So.
• 39:05
  Speaker 4: There might be a way that you can be effective
• 39:09
  Speaker 4: while having these kinds of thoughts. But here, we also
• 39:13
  Speaker 4: want to make sure that if you're saying you shouldn't
• 39:17
  Speaker 4: be doing this and it needs a professional, is it
• 39:21
  Speaker 4: tenable or not? Would you like to give direct care?
• 39:25
  Speaker 4: You are giving direct care, bedtime routines, night awakening. those
• 39:30
  Speaker 4: are direct care routines. Many family caregivers don't give direct
• 39:34
  Speaker 4: care because it's just too much.
• 39:37
  Speaker 3: Hmm.
• 39:38
  Speaker 4: Caregiving has a lot of different kinds of aspects. You
• 39:41
  Speaker 4: can be a caregiver who does direct care. You can
• 39:45
  Speaker 4: be a caregiver who checks in with people. You can
• 39:48
  Speaker 4: be a caregiver who just monitors and supervises or manages.
• 39:52
  Speaker 4: There's different ways of caregiving. There's a multitude of ways
• 39:57
  Speaker 4: that you can actually show caring for somebody. And the
• 40:01
  Speaker 4: question is, what is actually right for you? What is
• 40:05
  Speaker 4: it that you would like to do and what is
• 40:07
  Speaker 4: it that matters to you?
• 40:10
  Speaker 1: Is another way of putting it like, what am I
• 40:11
  Speaker 1: actually built for?
• 40:12
  Speaker 4: Well, I don't know if it's your constitution, but the
• 40:15
  Speaker 4: question would be, it has more like to do with willingness.
• 40:19
  Speaker 4: What can you see yourself do in the service of
• 40:24
  Speaker 4: what matters to you?
• 40:26
  Speaker 3: Claudia says, obviously, Brian only has so many resources. There
• 40:31
  Speaker 3: are other people involved he has to negotiate with. But
• 40:34
  Speaker 3: she says it's important to get clear on which caregiving
• 40:38
  Speaker 3: tasks you can actually see yourself doing in the long run,
• 40:42
  Speaker 3: because a lot of people see caregiving as all or nothing,
• 40:45
  Speaker 3: when maybe there's a creative, more sustainable solution. You'd be surprised,
• 40:51
  Speaker 3: she says, how many caregivers don't ask for help from
• 40:54
  Speaker 3: other family members or don't take advantage of in-home care,
• 40:59
  Speaker 3: even when they get funding from community agencies.
• 41:02
  Speaker 4: Taking myself as an example, I probably would not be
• 41:06
  Speaker 4: a person, even though my parents matter to me tremendously,
• 41:12
  Speaker 4: I probably won't be the person to do their direct
• 41:14
  Speaker 4: care and to assist them with instrumental activities of daily living. Yeah.
• 41:21
  Speaker 4: Because there is too much of a conflict there. I
• 41:25
  Speaker 4: value being there for my parents. And at the same time,
• 41:31
  Speaker 4: my job matters to me a lot. And now I'm
• 41:36
  Speaker 4: here 4,000 miles away. It turns out that when you
• 41:39
  Speaker 4: make a choice to do one thing, you often can't
• 41:44
  Speaker 4: do all the other things. So how I can be
• 41:47
  Speaker 4: there for them differs by my context. In the summers,
• 41:53
  Speaker 4: I can spend time with them and I can be
• 41:55
  Speaker 4: much more pragmatically involved and work remotely. So what can
• 42:01
  Speaker 4: you actually do? What would you be willing to do
• 42:04
  Speaker 4: in the service of what matters to you?
• 42:09
  Speaker 2: Yeah, I don't think I ever totally pictured this. I
• 42:11
  Speaker 2: didn't picture myself as a caregiver giving care. I pictured
• 42:16
  Speaker 2: living with my mother-in-law, and there'll be professionals who will
• 42:17
  Speaker 2: help us with that.
• 42:18
  Speaker 3: Right.
• 42:19
  Speaker 1: And we do. We do have an aide during the
• 42:21
  Speaker 1: day sometimes, and that's also been very hard.
• 42:24
  Speaker 4: Yes. You have somebody else in your home.
• 42:26
  Speaker 1: Yeah. So it comes with its own costs.
• 42:28
  Speaker 3: Yes.
• 42:28
  Speaker 1: Let's not like, oh, my God, this is perfect.
• 42:30
  Speaker 3: Absolutely.
• 42:31
  Speaker 4: Absolutely.
• 42:32
  Speaker 2: But I mean, that's part of the acceptance part is
• 42:34
  Speaker 2: just even like accepting this as part of my identity
• 42:39
  Speaker 2: and role in life as being like a caregiver for
• 42:43
  Speaker 2: an elder with dementia.
• 42:45
  Speaker 4: A lot of people start caregiving because of a sense
• 42:49
  Speaker 4: of duty or obligation. And at the same time, people
• 42:53
  Speaker 4: are not prepared that caregiving can be longer than caregiving
• 42:57
  Speaker 4: for a child. And so part of What we need
• 43:01
  Speaker 4: to do is really kind of figure out how sustainable
• 43:07
  Speaker 4: are things in the long run.
• 43:08
  Speaker 3: Yeah.
• 43:10
  Speaker 1: I mean, I have not prepared for that.
• 43:12
  Speaker 4: How will relationships be actually okay? How can you maximize
• 43:18
  Speaker 4: the relationship with your mother-in-law? Because it seems that kind
• 43:23
  Speaker 4: of suffers from arguing. If you ask her, she probably
• 43:28
  Speaker 4: wants to have great relationships with the three of you.
• 43:30
  Speaker 4: The question is how to actually make that happen. So
• 43:34
  Speaker 4: over the long term, it works.
• 43:37
  Speaker 3: Brian, you were nodding when Claudia was speaking just now.
• 43:42
  Speaker 3: I'm curious what has been going on through your head.
• 43:49
  Speaker 1: I think like the first part of this conversation, kind
• 43:52
  Speaker 1: of just.
• 43:53
  Speaker 2: Acknowledging, affirming that it's okay to feel angry and kind
• 43:57
  Speaker 2: of letting me feel that, that actually, like I felt
• 43:59
  Speaker 2: that kind of very physically. kind of a less pent
• 44:02
  Speaker 2: up feeling. Um, this doesn't feel that way. It's more
• 44:06
  Speaker 2: kind of, we're talking about a process that I could
• 44:08
  Speaker 2: see applying. Um, and it's trying to, I guess, trying
• 44:13
  Speaker 2: to find the relationship between the two. Cause yeah, I
• 44:18
  Speaker 2: do find this to just be like a very emotionally charged, fraught,
• 44:23
  Speaker 2: just an experience that involves a lot of emotions.
• 44:27
  Speaker 4: Is there a sadness about trying so hard and, Not
• 44:32
  Speaker 4: making it work.
• 44:35
  Speaker 1: Yeah, of course. And I feel guilt and grief.
• 44:41
  Speaker 2: And yeah, one thing this disease does is it certainly,
• 44:44
  Speaker 2: or at least I'll speak for myself, it makes me
• 44:47
  Speaker 2: very aware of how precious time is, you know, with
• 44:53
  Speaker 2: this loved one who is declining. But we do get
• 44:56
  Speaker 2: time with her. That's one of the great benefits of
• 44:58
  Speaker 2: living with her. We get these small moments.
• 45:02
  Speaker 3: Like when Brian's mother-in-law reads to his daughter, or when
• 45:06
  Speaker 3: the family takes an extra long walk in the neighborhood,
• 45:10
  Speaker 3: or sitting on the stoop together. Brian's personal favorite way
• 45:14
  Speaker 3: to connect is to sing. Like some Donny Hathaway song
• 45:18
  Speaker 3: will come on, and Brian and his mother-in-law will end
• 45:22
  Speaker 3: up singing together, sometimes dancing.
• 45:25
  Speaker 4: I'm acting out my life in stages.
• 45:32
  Speaker 2: And I both want that with her. I want to
• 45:34
  Speaker 2: give it to my wife, to my daughter, to my mother-in-law.
• 45:38
  Speaker 2: But then when that time is filled with this tension,
• 45:43
  Speaker 2: these negative feelings, then I feel guilt about it, you know,
• 45:46
  Speaker 2: because it's like, oh, I'm polluting this precious time with
• 45:50
  Speaker 2: this shit. And then that's like a self-talk that I'm into.
• 45:53
  Speaker 2: It's like we shouldn't be having to spend the time
• 45:55
  Speaker 2: having to figure out, like, manage an aide and figure
• 45:57
  Speaker 2: out care.com and, like, how to, you know, like.
• 46:00
  Speaker 1: You know, like all this stuff, like we don't have
• 46:02
  Speaker 1: time for and it's not a nice use of this
• 46:05
  Speaker 1: precious time. And then I feel resentful about that. But
• 46:07
  Speaker 1: if we were.
• 46:07
  Speaker 4: Working together, I would actually put, I'm polluting this precious
• 46:13
  Speaker 4: time with my shit. I would put that right now
• 46:15
  Speaker 4: up on the whiteboard.
• 46:16
  Speaker 3: Why?
• 46:20
  Speaker 4: Because there is so much judgment of you are the
• 46:25
  Speaker 4: odd person out. Everybody can live with this arrangement and
• 46:28
  Speaker 4: I'm the one who is just fucking it up. we
• 46:33
  Speaker 4: would put that thought on the whiteboard to actually then
• 46:37
  Speaker 4: actively start working on that one and thinking about how
• 46:40
  Speaker 4: useful it is and diffusing it so there's a process
• 46:45
  Speaker 4: that is called cognitive diffusion.
• 46:48
  Speaker 3: What's that this.
• 46:50
  Speaker 4: Idea of taking away the strength of the words the
• 46:55
  Speaker 4: impact saying it in a mickey mouse.
• 47:00
  Speaker 3: Voice You mean literally, literally saying it in a Mickey
• 47:06
  Speaker 3: Mouse voice?
• 47:07
  Speaker 4: Literally saying it in a Mickey Mouse voice. Not believing
• 47:11
  Speaker 4: yourself when you say it. Yeah.
• 47:14
  Speaker 3: I asked Claudia to send me a voice memo later
• 47:16
  Speaker 3: to demonstrate.
• 47:17
  Speaker 4: I'm poisoning this precious time with my shit.
• 47:21
  Speaker 3: Claudia says the act of Brian hearing himself say this
• 47:24
  Speaker 3: thought in the voice of a cartoon mouse.
• 47:26
  Speaker 4: I'm poisoning this precious time with my shit.
• 47:29
  Speaker 3: Can help him see it as ridiculous. Can help him
• 47:32
  Speaker 3: stop self-flagellating.
• 47:33
  Speaker 4: Because it seems like you are really trying so hard.
• 47:37
  Speaker 4: And your conclusion is because you're still feeling badly about it,
• 47:42
  Speaker 4: you're not trying hard enough.
• 47:44
  Speaker 1: That sums it up.
• 47:45
  Speaker 4: Yeah. I wish, you know, I could make this easier
• 47:49
  Speaker 4: for you. And I could take some of these things away.
• 47:52
  Speaker 4: I could tell you, yeah, I can make this easier,
• 47:56
  Speaker 4: but I can't. It is that hard.
• 48:00
  Speaker 1: Yeah, it's so hard.
• 48:01
  Speaker 4: And what if you were in a situation in which
• 48:04
  Speaker 4: you actually are doing your best and have done everything
• 48:07
  Speaker 4: you could and are doing whatever you can do?
• 48:13
  Speaker 1: Yeah, I feel like.
• 48:16
  Speaker 2: That's where I turn to acceptance because it's like, okay,
• 48:18
  Speaker 2: this is just a terrible disease and a really difficult situation.
• 48:25
  Speaker 2: And somehow millions of people are going through it and
• 48:29
  Speaker 2: still we don't have.
• 48:30
  Speaker 1: The proper treatment.
• 48:31
  Speaker 2: Approaches or supports there are therapies out there that could
• 48:33
  Speaker 2: help that nobody knows about um yeah what I'm taking
• 48:38
  Speaker 2: from this is we should probably hire you that's that's
• 48:41
  Speaker 2: my takeaway here yeah no I really appreciate it I
• 48:45
  Speaker 2: would love to get more info uh Claudia or if
• 48:48
  Speaker 2: you if there are people we should reach out to
• 48:49
  Speaker 2: here like I definitely you know we're in the middle
• 48:53
  Speaker 2: of this and have many years ahead of us probably
• 48:55
  Speaker 2: in one way or another so.
• 48:58
  Speaker 1: I'm certainly intrigued to learn more about this process?
• 49:02
  Speaker 4: I think it's really important.
• 49:04
  Speaker 1: Thank you.
• 49:05
  Speaker 4: Oh, you're so welcome. Thank you for sharing all the
• 49:09
  Speaker 4: best to you and your family.
• 49:11
  Speaker 1: I really appreciate that.
• 49:12
  Speaker 3: Bye.
• 49:29
  Speaker 2: That was an episode of Proxy with Yo-Wei Shaw. Thanks
• 49:32
  Speaker 2: to Yo-Wei for having me on the show. And thanks
• 49:34
  Speaker 2: to Claudia Drossel, my proxy. Claudia is a psychology professor
• 49:39
  Speaker 2: at Eastern Michigan University, where she's the director of the
• 49:42
  Speaker 2: Center for the Advancement of Neurobehavioral Health. If any of
• 49:46
  Speaker 2: you are caregivers yourself and are looking for support, Claudia
• 49:49
  Speaker 2: put together a list of resources, which we will share
• 49:51
  Speaker 2: in our show notes. We'll probably drop in here one
• 49:55
  Speaker 2: or two more times in the feed before the end
• 49:56
  Speaker 2: of the summer, and then we'll be back with our
• 49:58
  Speaker 2: regular programming in September.
• 50:02
  Speaker 3: I didn't know you were a singer, Brian.
• 50:04
  Speaker 1: Yeah, I was a singer in college, but I'm not
• 50:06
  Speaker 1: like a singer.
• 50:07
  Speaker 3: Were you in an acapella group?
• 50:08
  Speaker 1: I was.
• 50:09
  Speaker 3: What was the name of the group?
• 50:11
  Speaker 1: The Society of Orpheus and Bacchus.
• 50:16
  Speaker 3: Yes. Wow. Wow. That's like the nerdiest thing that I
• 50:20
  Speaker 3: know about you.
• 50:20
  Speaker 1: It is very nerdy.
• 50:22
  Speaker 3: Yeah.