I Don’t Want to Be Your Caregiver, I Want to Be Your Wife

Summary

Podcast Summary: "I Don’t Want to Be Your Caregiver, I Want to Be Your Wife"

Podcast Information:

• Title: Where Should We Begin? with Esther Perel
• Host/Author: Esther Perel Global Media
• Episode: I Don’t Want to Be Your Caregiver, I Want to Be Your Wife
• Release Date: December 9, 2024

Overview: In this emotionally charged episode of Where Should We Begin? with Esther Perel, a young couple grapples with the profound challenges brought on by early-onset Parkinson's disease. As they navigate the complexities of their evolving relationship, the conversation delves deep into themes of caregiving, communication breakdowns, emotional labor, and the struggle to maintain intimacy amidst adversity.

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1. Introduction and Context

Esther Perel sets the stage by emphasizing the confidentiality and authenticity of the session:

“What you are about to hear is a classic session of Where Should We Begin With Esther Perel. None of the voices in the series are ongoing patients of Esther Perel's and each episode is a one-time counseling session for the purposes of maintaining confidentiality.” ([00:02])

The couple consists of Partner 1 (Esther) and Partner 2, who has been diagnosed with early-onset Parkinson's disease, a condition that has drastically altered their lives and relationship dynamics.

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2. The Impact of Parkinson's on Their Relationship

Partner 1 expresses feeling overwhelmed and unprepared to handle the progressive nature of Parkinson's:

“I just feel so ill-equipped to handle something that I know is just going to keep getting worse... I believe that she deserves better than that.” ([02:28])

Partner 2 shares his struggles with the disease, highlighting the physical and emotional toll it takes:

“It's like just finding a day where, like, I don't feel like crap is a challenge... So it's kind of like an ostrich in the sand kind of thing.” ([04:44], [05:42])

The couple has three young children, adding layers of complexity to their situation as they try to balance caregiving with maintaining their roles as partners and parents.

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3. Communication Barriers and Emotional Labor

A significant portion of the session focuses on the breakdown in communication and the unequal distribution of emotional labor:

• Partner 1 feels she is burdened with the emotional work of the relationship:

  “I am in charge of connecting, having conversations. It's my job to talk about feelings, connection, emotion, state of the relationship.” ([10:39])

• Partner 2 admits to deferring emotionally:

  “All the talking. The family I was raised in was. We didn't talk a whole lot...” ([10:57])

Therapist (Esther Perel) highlights the imbalance:

“Have you been able to preserve the wife and the husband, the man and the woman, the partners, the lovers?” ([09:52])

This imbalance leads to Partner 1 feeling isolated and overburdened, performing roles beyond those of a spouse.

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4. Financial Strain and Trust Issues

The couple confronts financial discrepancies exacerbated by Partner 2's medication side effects:

Partner 1: “He spent our savings and that I don't necessarily believe what he says he spent the money on...” ([22:08])

Partner 2 admits to compulsive behaviors related to his addiction:

“For a lot of our married life I've struggled with addiction to pornography... I did not spend it on porn.” ([33:52], [41:45])

Therapist addresses the emotional fallout:

“I can't love you or accept you for who you are if you don't share it with me.” ([24:20])

The financial strain intensifies feelings of insecurity and distrust, making it difficult for Partner 1 to feel secure in the relationship.

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5. Parenting Under Duress

Parenting challenges emerge as the couple tries to shield their children from the stress of the illness:

“We have three young kids who don't sleep through the night... and I check out disputes.” ([34:00])

Partner 1 shares the difficulty of balancing motherhood with her role as a wife:

“When you initiate sex and I'm, like, unable to just, like, get in that frame of mind, it's because I am in mom mode.” ([35:11])

This dual role leads to frustration and diminished intimacy, as Partner 1 feels she cannot fully express her needs without reverting to a caregiver mentality.

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6. Strategies for Rebuilding Connection

Therapist provides actionable strategies to help the couple reconnect:

• Acknowledgment and Validation: Encouraging Partner 2 to acknowledge Partner 1's feelings without immediately trying to fix them.

  “I hear you. That sucks.” ([29:44])

• Creating Safe Spaces: Introducing the concept of a "glove" as a code word for when Partner 1 needs to express anger without fear of emotional shutdown.

  “You need to get some steam out...” ([31:52])

• Shifting Roles: Partner 2 is guided to support Partner 1 in transitioning from caregiver to spouse by fostering an environment where she feels appreciated and understood.

• Developing New Routines: Encouraging the couple to integrate small joys and maintain their identities outside of caregiving responsibilities.

  “You continue to create experiences that bring joy and pleasure and fun...” ([49:19])

Partner 1 expresses hope in these strategies:

“I think that's really wise.” ([32:47])

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7. Addressing Pornography Addiction

A critical issue addressed is Partner 2's ongoing struggle with pornography, which affects their intimacy and trust:

Partner 1: “You get different with me when you're watching more porn... What am I gonna do with that?” ([42:01], [43:27])

Therapist explains the psychological aspects:

“In porn, you never get rejected... It takes care of three very important male vulnerabilities.” ([43:08])

Partner 2 acknowledges his shortcomings:

“I feel like I'm definitely not as in tune with you when I'm watching more porn.” ([43:27])

The session concludes with an emphasis on honesty and developing healthier coping mechanisms:

“I want to understand something... I want you to say it in your own words.” ([30:15])

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8. Navigating the New Normal

As the disease progresses, the couple reflects on their changing life trajectory and the constant need to adapt:

Partner 1: “Things are going to change for us... Where Should We Begin with Esther Perel?” ([49:19], [51:20])

Therapist encourages resilience and the cultivation of a positive attitude:

“To choose one's attitude in any given set of circumstances, to choose one's own way.” ([52:27])

The session underscores the importance of maintaining a sense of self and partnership amidst the challenges of illness.

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Conclusion

This episode poignantly captures the multifaceted struggles faced by couples dealing with chronic illness. Through candid dialogue and expert guidance, Esther Perel facilitates a journey toward understanding, empathy, and renewed connection. The couple's story serves as a testament to the resilience required to balance love, caregiving, and personal identity in the face of life's unforeseen challenges.

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Notable Quotes:

• Partner 1 ([02:28]): “I want us to experience aliveness and vitality between the two of us.”
• Partner 1 ([10:39]): “I am in charge of connecting, having conversations. It's my job to talk about feelings...”
• Partner 2 ([41:45]): “I did not spend it on porn. I spent it on some in-app purchases... It’s stupid, but it’s the truth.”
• Therapist ([43:08]): “In porn, you never get rejected... It takes care of three very important male vulnerabilities.”
• Therapist ([52:27]): “To choose one's attitude in any given set of circumstances, to choose one's own way.”

---

Speaker Attribution:

• Esther Perel: Therapist and host.
• Partner 1: Wife, caregiver, and mother.
• Partner 2: Husband diagnosed with Parkinson's disease.

Timestamps: All quotes are referenced with their corresponding timestamps from the transcript for accurate context.

Transcript

[Esther Perel]

What you are about to hear is a classic session of Where Should We Begin With Esther Perel. None of the voices in the series are ongoing patients of Esther Perel's and each episode is a one time counseling session for the purposes of maintaining confidentiality. Names and some identifiable characteristics have been removed, but their voices and their stories are real.

[Sponsor Announcer]

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[Therapist]

Among the top stressors in any couple's relationship or family relationship is death and illness.

[Partner 1]

When you get married you think I'll be with you in sickness and in health and that's true. But you picture being old. I have early onset Parkinson's.

[Partner 2]

I was diagnosed about a year ago.

[Therapist]

This is a young couple. They're at the beginning of their life together. They have three young children and their entire life has begun to change more and faster than they can even get their head around.

[Partner 1]

I just feel so ill equipped to handle something that I know is just going to keep getting worse. So I know that communication is is hard for me between not being able to get a facial expression from him when we talk to this hiding stuff. I love him so much and I want to support him unconditionally, but I'm angry and scared when I come home from work. There are some days when it's all I can do just to get in the door and not have to talk about anything. I believe that she deserves better than that.

[Therapist]

And the beauty of the request from the intake interview was not how should we deal with his illness, it was her saying how do we continue to experience ourselves as young, as beautiful as vibrant, as loving and as sexual. I'm not ready to just not be dead. I still want us to experience aliveness and vitality between the two of us. Please help.

[Esther Perel]

This is. Where should we begin with Esther Perel?

[Partner 1]

I feel like we've been in survival mode for so long. Fundamentally, I think we have two different, like, fears in life. And I think yours is that you would lose me and mine is that we wouldn't live just be in survival mode for so long that we're not really living.

[Therapist]

You've been good at living before.

[Partner 1]

Yeah.

[Therapist]

You've been good at feeling alive before.

[Partner 1]

Yes. Yeah.

[Therapist]

And now you are most more focused on not feeling dead.

[Partner 1]

Yeah.

[Partner 2]

It's a good way to put it. Yeah, That's a good way to put it.

[Therapist]

Put it in your words.

[Partner 2]

I think, like, personally, with my. With all the health stuff, it's.

[Therapist]

How old are you famous?

[Partner 2]

39. It's like spend so much time doing doctor's appointments and medication and all that. It's like just finding a day where, like, I don't feel like crap is a challenge. All the medications are to control the symptoms. There's no. There's no medication for the. To change the trajectory of the disease. So it's. It's just kind of.

[Therapist]

Are you doing any of your own things to exercise? What kind?

[Partner 2]

Some boxing and swimming and running and cycling.

[Therapist]

They say the boxing is the. A lot of fun is the new Parkinson's.

[Partner 2]

It's a very intense workout, but it's kind of cathartic at the same time because you get to hit something and that helps.

[Therapist]

And are you part of any type of group? Do you have a source of support and information? Both?

[Partner 2]

We've taken some classes, informational sessions. We had one once a month for the last school year and that was very informative. As far as support group, I'm not really in one right now just because I don't feel like I'm in a place for that, so. Meaning in some ways, I just don't want to face it. So seeing people that are more advanced in the disease is a little challenging. So it's kind of like an ostrich in the sand kind of thing.

[Partner 1]

You think age is part of it too?

[Partner 2]

I think age is part of it. Average age for diagnosis is 55. So in most of these groups, I'm a good 10 years younger than everybody else in the group. 20, 20 in most cases, because the average age of diagnosis is 55. But then most people that are in groups like that have had the disease for A while. So they're 60, 70 and higher. So finding people to relate with that are going through the same things is a bit of a challenge.

[Partner 1]

The first person we talked to after the diagnosis was like, this can be the best thing that ever happened to you. It's a great time to take early retirement and do a new class every day. All these classes are offered. So I do a different exercise class every day, and all of those things are offered during the workday. So if you can't retire and you. You have kids who need to be at dance class and school and reading homework, it's hard to relate to people who are retired.

[Therapist]

Yeah. Yeah. Yep.

[Partner 2]

Yeah.

[Partner 1]

And don't have little kids in the house. Cause it's really different. They're like. It's. You know, we talked about telling our kids one day, and they were like, you know, it was so hard. I had to call my daughter at college. I was like, my daughter was 2. So that was a real different conversation.

[Therapist]

And you've sold your kids.

[Partner 2]

Yeah.

[Therapist]

And if they changed anything about how they are with you, they continue. No, they're just being kids with Daddy.

[Partner 2]

So in general, they're just being kids with Daddy. Our middle son had a bit of a hard time. He went through, like, a couple weeks where we had told him, but he was still processing, and he wasn't asking questions. So he was going through this thing where he thought he would catch it, just like playing with Daddy. So once that came out, it was. We kind of corrected him on that, and he's not as freaked out about it.

[Partner 1]

We felt like we had to tell them because they knew something was going on, and we didn't want to lose their trust. There were a lot of extra appointments and a lot of shuffling them to different care places, and they could see that the adults were all worried. We didn't want them to hear it, especially the oldest, from somebody else. So we told them a very.

[Partner 2]

The children's book version.

[Partner 1]

Yeah.

[Therapist]

You have three kids. You have both sets of parents.

[Partner 2]

Yes.

[Therapist]

You are an only child.

[Partner 2]

Yes.

[Therapist]

You are the youngest of three. All these people are part of your life and friends, I would say.

[Partner 2]

So it feels a little lonely sometimes.

[Therapist]

But say more, because what's happening, what I think sometimes happens is that there's such an emphasis on the physical and on how you're doing and how you're feeling and your exhaustion and this and that. The rest doesn't get enough attention. Not how you feel, not what this means for you, not how you're dealing with it as a Couple not how you are not going to classes where they keep calling you a caregiver and.

[Sponsor Announcer]

They forget to call you the wife.

[Partner 1]

Do that. It's like the worst thing ever. That was like our whole class we took once a month for like, what, nine months. Nine months. They called us the caregiver. So we'd have caregiver breakouts.

[Partner 2]

Care partner.

[Partner 1]

Oh, care part. Whatever. It's still. It's a horrible.

[Therapist]

Right. I was not. Have you been able to preserve the wife and the husband, the man and the woman, the partners, the lovers?

[Partner 1]

We're trying, but I think that a lot of times we just feel like we're surviving. I think you go.

[Partner 2]

I think we are partly.

[Therapist]

That was quite a cue.

[Partner 2]

She's good at that, I think. I tend to defer to her on raising the children and that kind of thing. So.

[Therapist]

Raising the children and what else?

[Partner 2]

Housework and the stereotypical.

[Partner 1]

I don't think you have the language for this, but. He means the emotional work. I'm in charge of connecting, having conversations. It's my job to talk about feelings, connection, emotion, state of the relationship.

[Partner 2]

I have her do all the. Like she said, all the talking. The family I was raised in was. We didn't talk a whole lot. It was like I knew my. I know my parents love me, but it was never. It wasn't said that often. And so I just don't bring it up very often, so.

[Therapist]

But you chose this woman.

[Partner 2]

I think in some ways it was because of that. Because she. This is gonna sound cheesy, because that's okay.

[Therapist]

We like cheesy.

[Partner 2]

But it's. I forget what the movie's called, but the youe Make Me Want to Be a Better Man. It's kind of like that where she brings that out of me, so.

[Therapist]

And when's the last time you told her that?

[Partner 2]

About 10 seconds ago.

[Therapist]

So you're going to do it again, but this time you can look at her rather than me.

[Partner 2]

You make me want to be a better man.

[Therapist]

So while she knows the man she's with and she knows he's an introvert, and she knows that he will come home and keep to himself and not speak much at this point where she needs to feel more connected with him, she wants a little more. A little bit more of his internal voice of what goes on inside of him so that she doesn't feel like.

[Sponsor Announcer]

She has to do all the talking.

[Therapist]

For her and for him. And that's why when he begins to talk about why, in fact, he. He did leave it to her. To do what she clearly calls the emotional work. I encourage him to speak that which he rarely says, but no less feels. Keep going with that.

[Partner 2]

You helped me do the things that I never thought I could do. You are so amazing with. With friends and family in our lives that I kind of take that for granted. Sometimes you make me get out of my comfort zone.

[Therapist]

Like today, Right here, right now.

[Partner 2]

Right here, right now.

[Therapist]

Keep going. You're doing really well. You're alone. You've got no kids. We have time. You have nowhere else to be.

[Partner 2]

I feel like one of the things that keeps me going is seeing you when I get home. I love that you stop everything you're doing to say goodbye or greet me when I come home. I know I don't say it a lot, but that means a lot to me. And this is where I stall out because I can't have anything else to say.

[Therapist]

Even when I come home and I don't say a word to you, it's not because I don't want to talk to you. Say it in your own words.

[Partner 2]

When I get home at the end of the day, I feel like you always try and take the time to see how everybody's day is going and check in and do highs and lows. And I know I'm not always good at participating in that, but it's always amazing to me that you take the time to do that. I really appreciate it. I feel like you do a lot of things that I have a hard time doing, and I think that's why I wanted to spend my life with you.

[Therapist]

And if there's something that you could do better, what would it be? You may not become as extroverted as her.

[Partner 2]

I don't think that's possible. Right.

[Therapist]

But you could be more often reminding her that you actually appreciate the way she goes about it.

[Partner 2]

If there was something I could do better, I think it would be telling you what I see in our children. Just how you bring these amazing people out of them. I think our kids are very in tune with a lot of their emotions because you help them with that. I don't do that. You help me see that I can be a better father and a better husband just by interacting with you guys more.

[Partner 1]

You bring the boundaries, I bring the boundaries, which is good. They need boundaries and the heavy, but they need both. You're essential, too.

[Partner 2]

Thank you.

[Partner 1]

And actually, I would say that you're one of the most appreciative husbands that I know. Really?

[Partner 2]

Thanks.

[Partner 1]

The thing I worry about is when you don't tell me not like the little stuff. And I feel really appreciated. I worried that you don't tell me the stuff that you're afraid of or ashamed of because that's what makes me resentful of quiet because I don't know when that other shoe is going to drop. Okay, does that make sense?

[Partner 2]

I think so.

[Therapist]

She highlights a very important distinction here. I worry that you're quiet not because you have nothing to say, but I worry that you are quiet because in fact you have something very important that you don't want to say. And she knows the distinction between his being quiet introverted versus his obfuscating hiding something that he actually ought to let her know about.

[Esther Perel]

We'll be back with a session right after this, and while we love our sponsors, if you want to listen to this session ad free, click the Try Free button to subscribe to Astaire's office hours on Apple Podcasts.

[Sponsor Announcer]

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[Therapist]

Speak to that.

[Partner 2]

You worry that I won't bring the the big stuff to you? That the things that I'm ashamed of.

[Therapist]

When she says the things you're afraid of. What are we talking about?

[Partner 2]

That for a lot of our married life I've struggled with addiction to pornography. Like she said earlier, one of my bigger fears is that I will do something to lose her.

[Partner 1]

I get that. I married someone quieter. And it's not the quiet that bothers me. It's when you don't know if the quiet is not having something to say or if the quiet is hiding things. And then when I sense something is off, then I feel really resentful. My life is so busy. I don't want to have to pull things out of you. I just want you to tell me. I can't love you or accept you for who you are if you don't share it with me. I know you worry about losing me. I worry about us not ever really sharing that and moving forward.

[Therapist]

Not sharing.

[Partner 1]

Well, a huge thing is that when he came was on one of his medications, they told us when he went on it that it could bring out very compulsive behaviors and that he needed to call the doctor at the slightest inkling of a compulsive behavior. That for most men, it was sex. For most women, it was shopping. And we talked about it, and he promised that he would come to me, but he didn't come to me until it was really out of control. By the time he told me. And honestly, it didn't feel like he told me because he wanted to tell me. He told me because we were on the way to a doctor's appointment. He knew he needed to get the medication adjusted, and he knew I'd be in the doctor's appointment. If it wasn't for that, I don't know if he would have told me. So I got this bomb dropped on me while I'm driving the hour to the doctors. And then we were going to have our first big date night, like, the next day. So we had our first, like, great big night out. Honeymoon. Not honeymoon. Anniversary. And I'm still processing that he spent our savings and that I don't necessarily believe what he says he spent the money on. So I never know if I've gotten to the bottom of it, because I know he's ashamed. I know he's afraid of losing me. He has me. You have me. I'm left in this state of fear, not knowing what is coming. Or is there more than I need to know?

[Partner 2]

Okay.

[Therapist]

And you've had that conversation.

[Partner 1]

Mm. And this is. This is where it usually stops. Right about here. And he says he's sorry. And I don't want him to feel guilty.

[Therapist]

He should feel guilty. Why shouldn't he feel guilty?

[Partner 1]

Well, and this is part of the problem. I feel like.

[Therapist]

No. I mean, isn't that the. Amongst other things. But isn't that one appropriate response to when you've done something? That's.

[Partner 1]

It's true. I just. I feel like I have to be so perfect when he comes to me about something because I don't want to shut him up more.

[Therapist]

Ah. So if he feels bad about something, you can't get mad because.

[Partner 1]

Yeah. And then I don't get to be mad. That's the thing. Like, I feel like I should have at some point. Like, I didn't put the kids in a single summer camp. I had all three of them, 24 hours a day, seven days a week, all summer, even when he was out of commission for more than two weeks because then we didn't have the money because of whatever he spent it on. And I don't get to be mad because I have to be a safe place to tell things to, you know.

[Therapist]

This is a quintessential moment that shows what she means when she says, I do the emotional work. He should feel bad. It's normal that he should feel guilty. But if he feels bad, then she feels that she has to go and attend to him to make him feel better, to bring him up, to pamper him, which then usurps her possibility of actually saying how mad she is about the fact that he squandered their entire life savings. And so she's caught because she has nothing to gain from being mad, because then she will feel so bad that she has to take care of him.

[Sponsor Announcer]

And on the other end, she needs.

[Therapist]

A room for her feelings as well. This is an interaction that I think so many of us recognize.

[Partner 1]

I do resent that, but I don't know how to move past it because.

[Therapist]

What, are you worried that if you tell him you're mad that he's gonna go in his closet?

[Partner 1]

Yes.

[Therapist]

Do we know that for fact, or. You're protecting him from himself all the time, but we actually don't know.

[Partner 1]

I think any strong emotion from me, and he automatically shuts up. That's been my experience.

[Partner 2]

I think that's.

[Sponsor Announcer]

Any negative.

[Therapist]

Strong emotions?

[Partner 1]

Yeah. I mean, it doesn't even have to be directed towards him. I mean, I've been grieving all summer because my two best friends after the diagnosis just totally ghosted on me. So when he says, we have a community around us, I don't feel that. And that's not directed at him, but just me being angry at them makes him shut up to the point I finally had to say to him, like, I feel like you're not on my side. He said, oh, I am on your side. I just. I just want it fixed. I just want you guys to all be friends again.

[Partner 2]

Yeah, and I did say that, but.

[Therapist]

I want to understand something. So when she becomes more vocal or more intense or not even at you, I hear just. Even you. What? You get overwhelmed? You feel like it's too much noise? It's chalk on a blackboard. You want to fix it. You want to make it away right away, but you don't know what to do. You freeze. What?

[Partner 2]

I want it to be better. I want it to. I want it to go away might not be the right word, but I don't know what to do about it. But I want there to be a solution. And to what? To the. Whatever the strife is, Whether it's.

[Therapist]

Why do you want there to be a solution?

[Partner 2]

Because I feel like I always have to fix it. I always feel like I have to, like, have the. Here's. You know, you do step one, two, three, and four, and then we're done.

[Therapist]

But that's engineering.

[Partner 2]

Yes.

[Therapist]

That's not relationships.

[Partner 2]

I agree.

[Therapist]

So do you know what's the best thing you can do when you say, I want to do something?

[Partner 2]

No.

[Therapist]

Have you asked her?

[Partner 2]

I don't think I've asked you.

[Partner 1]

And it depends on the thing. But when it comes to, like, my friends, like, I just want you to be mad, too. I just want you to say, like, that really, really sucks. And I thought they were better people.

[Partner 2]

Yeah.

[Partner 1]

And it's not fair. And.

[Partner 2]

Yeah.

[Partner 1]

Give me a hug and then we can move on and just grieve it and let it go.

[Partner 2]

Yeah.

[Therapist]

So if I give you a sequence, would that be helpful?

[Partner 2]

I think so.

[Therapist]

Right. Step one. In the sequence, we're going to take the example of the friends. One is in relation to your friends. One is relation to each other. I'm really upset. My girlfriends. Go ahead.

[Partner 1]

I'm really upset that after everything I did for my friends, that they are being so cruel that I can't even wave at them when we drop the kids off at school. You know, what I've done for each of them in the past, and it's so unfair and so hurtful and so petty. I'm really angry.

[Therapist]

So step one, you just say. I hear you. Say more. What else? Just bring it on.

[Partner 2]

I hear you. That sucks.

[Therapist]

You acknowledge step one is you acknowledge not what happened, but her feelings, her experience. Oof. You seem really upset. What else? What happened? What more? Where are you at with this now? Be curious.

[Partner 2]

Okay. I don't know if I have the language. I hear what you're saying. I wish there was something I could do to make it magically go away. No, no.

[Therapist]

You don't have to do squats.

[Partner 2]

I know.

[Therapist]

Except create a space where she can unload. And if you know that that is doing plenty, you don't have to do more than that.

[Partner 2]

Okay?

[Therapist]

You're not gonna fix her relationships with her girlfriends. And maybe she will and maybe she won't. At this point, she needs a place where she can safely vent.

[Partner 2]

Okay.

[Therapist]

That is doing plenty. You create the frame and you hold it.

[Partner 2]

Okay.

[Partner 1]

I don't get more angry when you commiserate with me. I Get less angry because what happens is, like, I feel so attacked and made into the bad guy, and it feels so unfair to me that I'm just reacting to, like, I'm not the bad guy. Like, I. Why can't I say hi to you at school? Doesn't make me more mad. It just makes me go, thank you. Yes, they suck. That was mean. But then I can let it go. Like, it doesn't build up and get more and more mad. It just is like, okay, it's right. That does suck.

[Therapist]

And you are my friend.

[Partner 1]

Yes.

[Therapist]

You're on my side. You're with me.

[Partner 1]

Yeah.

[Therapist]

I'm not alone.

[Partner 1]

Yeah. Yeah, that's.

[Partner 2]

You're not alone, no matter what. I know I don't say it sometimes. I don't know how to say it, but you are never alone.

[Therapist]

And then on occasion, you bring her a glove.

[Partner 2]

A glove?

[Therapist]

Yes.

[Partner 2]

Why a glove?

[Therapist]

Because you just said it feels good to hit.

[Partner 2]

Okay. We do have gloves in the basement.

[Therapist]

Yes. And you bring her downstairs and you say, you need to get some steam out. And then you get to work on your illness. She gets to practice and unload, and you go for five minutes downstairs, you bang away, and off you go.

[Partner 2]

It is fun to hit something.

[Therapist]

So show her. That will also make the boxing not just be a medical thing.

[Partner 1]

I would like that.

[Partner 2]

Okay, Deal.

[Therapist]

And on occasion, if need be, you just say to him, I need a glove.

[Partner 1]

Okay.

[Therapist]

And that becomes the code word that says, I'm really pissed. And I need to feel that there is room here for me to be mad on occasion and not be afraid that you're going to shrivel up. So if you both have a glove, you don't shrivel.

[Partner 1]

I think that's really wise.

[Therapist]

You understand? Now do the same. The steps is first you acknowledge, and then you may need to validate and just say, if this was done to me, I'd be pissed, too. All right. This was done to me, I would be really upset. You just validate. It makes sense that you're pissed. After the validation, you can empathize. And then, you know, me, too, if the shoe was on the other side, I'd be feeling like that myself. It's very lonely. It's like, this is a raw deal, and then the next one is, honey, I'm here, there's not much to say. And that's why the hug speaks volumes. Come here. Is that doable?

[Partner 2]

Yes.

[Partner 1]

That would mean a lot to me.

[Partner 2]

Okay.

[Therapist]

And now we need to do the same thing around the compulsion and the spending, the savings in response to the side effects of the medication. But the compulsion to porn, did that begin just now or. That's been there before.

[Partner 2]

That's been there before.

[Therapist]

All right, so then those are not one and the same.

[Partner 1]

Right, Right. And I understand that compulsion is related.

[Therapist]

To the medicine, but that's not all of it.

[Partner 1]

And he didn't come to me or a doctor or the people in our community. We'd set up to say, if you can't talk to me, talk to this friend. If you can't talk to this friend, call the doctor. He can email this doctor at any time over side effects from the medication. And we had set that deal up because I didn't want to be your mom. I feel like this is the ultimate, like, sex killer in our relationship, as is that I am in such mom freaking mode all the time. We have three young kids who don't sleep through the night. Yeah. And I wipe butts and I check on feelings and I sort out disputes. And when I feel like I am also caretaking this, then I don't want to have sex with it. Like, I. That is a really hard hat to shift for me.

[Therapist]

And so for most women, by the.

[Partner 1]

Way, okay, that feels good.

[Therapist]

But do you know that? Do you know that?

[Partner 2]

I don't think I do.

[Partner 1]

When you initiate sex and I'm, like, unable to just, like, get in that frame of mind, it's because I am in mom mode. And mom mode is, like, the furthest thing from sexy mode ever. Like, it's just, like, such a hard transition. I have to come out of mom mode to enjoy sex. Otherwise, I just.

[Therapist]

And what helps you do that? What are the things that.

[Partner 1]

The biggest thing is when I feel like you are taking care of yourself and coming to me from a position of strength, then I don't feel like I'm your care partner. Then I feel like I can get in touch with. Oh, right. Like I'm a woman with a partner. That feels so different to me. But that mental shift is really hard to make sometimes.

[Therapist]

She's shedding a light on one of the very important aspects of female desire in mom mode. She needs to be selfless. She needs to be responsible, to attend to the needs of others. She is in the burden of caretaking. If he comes to her with confidence, that's what she means about strength. The biggest turn on confidence, then it means that he's not coming to her saying, I need you, but he's coming to her and saying, I want you. If he needs her, then she's more of mom. She's once again in caretaking mode. If he wants her, then she can focus on herself. She can attend to her own desire. She can be self centered rather than selfless.

[Sponsor Announcer]

We are in the midst of our session and there is still so much to talk about. We need to take a brief break.

[Therapist]

So stay with us.

[Sponsor Announcer]

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[Partner 1]

And so now, when I don't want to be your babysitter or your mom or give you discipline, like I have to do with the kids, I still have this haunting over me that, like, oh, but where did our savings go? And I still don't really know where that money went. And I. I don't think you've told me everything. And that feeling of insecurity, I don't really know all of theirs to know. I don't really know all of you. And maybe I better be taking care of you. And looking up on you and checking in on you makes you feel like a naughty teenager, which is super unsexy. Okay, so this is the part where if you can come back at me, we can have a conversation, but if you don't come back at me, I feel like I've just shut you down. And now.

[Partner 2]

So as far as the money goes, I have told you everything.

[Partner 1]

So you really spent it on games and not on porn?

[Partner 2]

Nope, I did not spend it on porn. I spent it on some in app purchases. On video games? No, none at all. I know it's. It seems like a lot to spend on video games. It's stupid, but it's the truth.

[Partner 1]

And your porn use is getting better.

[Partner 2]

Not all the way gone.

[Partner 1]

You get different with me when you're watching more porn. I can sense it, but I can't always put my finger on it. And then you get way more, like, crabby, like, and I'm like, oh, gross. Like, can you touch my arm first? Or like we, like, have a connection or, like, a breath together, a look in my eyes. I feel things slowly changing in our dynamic, and then I suspect that you're watching We're Porn, but because you're so ashamed to talk to me about the details, what I worry about is, are you watching it at work? Are you watching it when I'm letting you rest and I'm running at empty? Like, to me, there's a big difference between the kids are in bed and I want to go masturbate or whatever. And, like, right, you know, are you coming home late because you're watching porn somewhere? I don't know.

[Partner 2]

It's always in the times where kids are asleep, you're asleep. I feel like I'm definitely not as in tune with you when I'm watching more porn. I can definitely feel it. It's one of the things I don't like.

[Therapist]

You know, in porn, you never get rejected. There's never somebody who says, don't come in both sense of the word, for that matter. But you don't get rejected in porn. You don't have to ask yourself if you're being competent or adequate. You don't have to measure yourself up one bit. And in porn, you don't have to wonder if she's enjoying it or not because she'll pretend that she's having the best time. It takes care of three very important male vulnerabilities. So it's not for its own. Because I enjoy, on occasion, watching porn. It becomes the go to for a lot of things.

[Partner 2]

Okay.

[Therapist]

Okay means what?

[Partner 2]

Okay means I hear what you're saying and now I'm trying to fix it. Means that I'm trying to think of, when we leave here, what am I gonna do with that? Maybe the thing is just like knowing that that's the thing and acknowledging that and just saying.

[Therapist]

I'm worried.

[Partner 2]

Yeah.

[Therapist]

I'm anxious.

[Partner 2]

Yeah.

[Therapist]

I'm lonely. I'm restless. I'm turned on. I want to be turned on. I feel. And then fill in the blank. And then make a list of 10 other things that you can do as well.

[Partner 2]

Okay.

[Therapist]

Do you like to build things? Do you like to fix things? Yes. Do you like to fix mechanical things? 5:00 in the morning? Some people build beautiful things.

[Partner 1]

I think she's onto something here.

[Partner 2]

Yeah.

[Partner 1]

I think one of the reasons why I drive so much in our relationship is because sometimes you think you don't have a hobby and you feel a little lost. And maybe this is a great chance for you to try and figure out what it is that brings you joy. Because we can't control how you feel physically. But I think the more you could find stuff that you just really do enjoy, it can feel alive, even if you're feeling really tired and crappy.

[Therapist]

We could have continued focusing on the porn we had just begun. But knowing that we were nearing the end of the session, I made a different choice. He's been the protagonist of the relationship for the last three years. And the last thing we needed was.

[Sponsor Announcer]

Her continuing to help him figuring himself.

[Therapist]

Out with now me joining her so.

[Sponsor Announcer]

That it's two women helping him to.

[Therapist]

Figure him himself out. I thought in this moment that she needed the space and so we changed direction.

[Partner 1]

We were looking so forward to this year because the little one was going to get bigger enough that, you know, it's easier to go out and get babysitters. Everything gets easier once they're out of diapers and closer to sleeping through the night, you know, and we thought, oh, you know, we're going to do all these things again. And now the energy's not there. So we have to also figure out how do we rebalance? And then every time it feels like we rebalance, then the disease progresses. And so then you have to rebalance again. We're in this constant, like, trying to get our feet under us. And that leads to this horrible cycle of survival, Survival, survival rather than living. And I don't want my kids to grow up like that, you know, I want them to enjoy things. And.

[Therapist]

Are you able to enjoy it with them?

[Partner 2]

Some days.

[Partner 1]

He'S trying, but it's like bringing the spring cloud along.

[Therapist]

Right? But there's a difference between energy and attitude. At this point, it's very. It's still early. First, there is the shock. There is the what does this mean? There is the how fast it is progressing. There is the I'm going to continue normal. Then there is the new normal. Then there is the unknown. There's a lot of things to absorb here, and I don't know that one can avoid it. It is the. It is what it is. But then starts a new phase. And that new phase is, how am I going to live with this? What can I control in a way? What can I determine? And what attitude do I want to bring to this? An attitude is different from energy. Very healthy people, physically healthy people, with a terrible attitude, and they are very sick people with an amazing attitude. They radiate. Right now you have a bit of a, you know, a story. I am the guy who doesn't talk. I am the guy who, you know, needs to fix things. But then I am the guy who doesn't have a big repertoire of how you fix things. And then I'm. And it just isn't. It's a little narrow and it's a little rigid. And I don't see it being that true. I think once one gives you and says, do this, even if you mimic me, because the way we learn, like your children, is first you imitate, then you identify, and then you internalize. So at first you mimic me. I say, do it, and then you do it. And then at some point, I say, do it your way. Do it with your own words. And then after a While you just do something that is not at all what I suggested, but it is, it has the same effect.

[Partner 1]

I hate the whole care partner business. But if this does keep progressing as fast as it has, you know, things are going to change for us. What do you say to young couples who, you know, we're not old? I. We said in sickness and health and we meant it. We just thought we'd be a lot older.

[Therapist]

I don't have anything revolutionary to say. I think on many levels you probably know so much more than me already about this. But the attitude is one in which you continue to do two things. You continue to create experiences that bring joy and pleasure and fun, even if they are small things. Beauty, music. You try as hard as you can to separate when you're the woman and when you're the wife and when you're the caregiver. And you too, at some point you may need a caregiver. You're going to create other sources of support that are creative. You're going to continue to educate yourself and you're going to look at what are some of the things that other people. They are young people. You just have to find them and what have they done. You can't just go by the doctors. You have to go by the people who have experienced it and have tried things. That doesn't mean that's the right thing for you, but it gives you ideas. And you're going to start to create a network of people that you've never met that live in various parts of the world. You're going to use all your nice little tech skills for something else than to low down porn.

[Partner 2]

Okay.

[Therapist]

In moments like these, I too have to confront my own helplessness. There is nothing I can do towards the progressive ravaging effects of his Parkinson's. But I always think about the book Man's Search for Meaning by Viktor Frankl, which he wrote about his experience in the Nazi concentration camps when he said that everything can be taken from a man but one thing. The last of the human freedoms. To choose one's attitude in any given set of circumstances, to choose one's own way. And I want to give this man that freedom that he can know that he didn't choose his illness. Far from. But he can choose how he will live with his illness.

[Esther Perel]

You just heard a classic session of Where Should We Begin With Esther Perel. We are part of the Vox Media podcast network in partnership with New York magazine and the Cut to apply with your partner for a session on the podcast. For the transcripts or show notes on each episode or to sign up for Estera's monthly newsletter, go to estherparel.com Esther Perel is the author of Mating in Captivity in the State of Affairs. She also created a game of stories called Where Should We Begin? For details, go to her website, estheraparell.com.

[Sponsor Announcer]

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