Transcript of Rage, Guilt, and Love in Alzheimer’s Caregiving

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I was supposed to be flying back and our dog wouldn't go to the bathroom. She hadn't peed in like 16 hours. And I was like, I have to get on the plane. And I was screaming. I was just I was raging. You know what I mean?

Caregivers, you know this feeling, the feeling when everything is just too much. And the next thing that goes wrong is going to be the thing that pushes you right over the edge. Lauren Miller-Rogan's mom, Adele, had been diagnosed with early onset Alzheimer's disease about four years prior at just 55 years old. And at this moment in 2012, Lauren was deep in her feelings about it.

My friends had recently moved to Los Angeles, and we had an adjustment period. It was a new time. It was quite a transition.

Lauren and her husband, Seth Rogan, had just moved her parents from Florida to LA with round the clock care. These were big changes, lots of stress, and sometimes that stress exploded in unexpected places, like at the airport over a dog that refused to pee.

And Seth basically was like, We're not doing this. You can't be like this. This isn't helpful, and I won't take this. I can picture it still.

That rage, those raw feelings, I know them well. I remember feeling that way after my dad first got diagnosed with Alzheimer's. I didn't understand why it had to be him and why it had to be now, and why it had to be me. It was all the whys that drive you crazy. For Seth and Lauren, those emotions were part of a daily storm of feelings they were learning to navigate together.

I remember saying that I at least need a few minutes in the morning before we fly into a rage. Maybe let me brush my teeth and have some coffee.

I talk about how horrible people are, how the world is awful.

Things like that. Maybe if you're things like that, I remember.

I'm Yvette Nicole Brown, and this is Squeezed. Today, I'm overjoyed to be talking with Lauren Miller-Rogen and Seth Rogan about navigating caregiving as a young couple and how they're changing the way America talks about Alzheimer's disease with their foundation, Hilarity for Charity. When you meet other people who have also cared for a family member with Alzheimer's, there's an understanding you both have about what that journey is really like. The waves of grief, the rage that comes out of nowhere, and those small moments of joy that you have to latch on to as lifelines. When I met Seth Rogan and Lauren Miller Rogan, I thought, They get it. And while I truly wish we weren't in this club together, being able to talk about Alzheimer's disease makes the caregiving journey way less lonely. And boy, have they made it their mission to speak about it. By using their social media platforms and their foundation, Hilarity for Charity, they've been putting Alzheimer's in the spotlight.

Seth Rogan and his wife, Lauren Miller-Rogan, not only one of Hollywood's big comedy couples, together, they're a powerful team, raising money and awareness for Alzheimer's.

Ladies and gentlemen, thank you so much for being here tonight at Hilarity for Charities' 10th birthday extravaganza.

But before they got into all their advocacy work, before they could have even imagined talking about this disease publicly, they were a young couple falling in love.

Seth and I met in May of 2005, and I had been in Los Angeles for about a year and a half. I was an assistant. I was making friends and starting my circle, starting my life. In the background, my mom was starting to repeat herself.

Only a few months into dating, Lauren's parents flew out to LA to celebrate her birthday and to meet her new boyfriend, Seth.

Then I dropped them off at the airport and then went back over to Seth's apartment. It was the first time I acknowledged it out loud and was like, Oh, she's changing. He didn't have any reference for her before, so he was like, Oh, she seemed great. What do you mean? Because in many ways, of course, she was still very much herself at that point. It was so early. But But I knew, as family members do, because you know that person so intimately. She was my mother.

Not long after that, Adele was diagnosed with early onset Alzheimer's. Lauren was only 25 years old. From that point on, Alzheimer's was running in the background of her relationship with Seth.

It was this thing, we were falling in love. My career was growing. I found my footing as a writer. I made my first film. All these things happened while she was sick, while we were caring while I was watching my mother slowly die from this terrible, terrible thing.

Lauren told me Seth was supportive from the start.

Luckily, Seth was someone who wasn't afraid of dark stuff and emotions and was always able to hold my deep and dark feelings about it, my anger. Because he comes from a family, his mother and sister are social workers and It comes from a family that is comfortable with the layers of emotions and mental health. And ultimately was the person who pushed me to go to therapy for professional help, which was huge. And then, of course, ultimately was right on my side when I was ready to start talking about it.

So you're now in this new relationship with all the joy and the love and wonderful, the stuff that comes from that. And then you're also now facing what's happening with your mom. Can you explain how you're able to How did you balance both? New relationships are wonderful, and someone who understands and wants to walk the journey with you is a blessing. But at the same time, you're terrified, I'm imagining, of what's about to happen. So how did you balance those two versions of yourself while you were in the midst of this Yeah.

I mean, did I balance myself, Seth? I don't know.

That's a good question.

Did you, Seth?

Did she? Yeah. Did she? Yeah. Did she? Yeah. Did she? Yeah. Did she? Yeah. Did she? Yeah. Did she? Yeah. Did she? Yeah. Did she? Yeah.

Did she? Yeah. Did she? Yeah. Did she? Yeah. Did she? Yeah. Lauren already knew a lot about Alzheimer's disease in those early days of her mom's diagnosis because both of Adele's parents, Lauren's grandparents, had it, too. Adele had been their caregiver, and she didn't want Lauren to have to go through what she had gone through.

My mom gave me an incredible gift early on in her diagnosis, which was I was not to stop living my life for her. I was also incredibly lucky to have a father who was so devoted to his beautiful wife and wanted to be there right next to her every step of the way. And so I didn't need to do that. And I was incredibly lucky that I didn't have to do that. And ultimately knew that what she wanted was for me to live the life that she had taught me to live, that she had raised me to go after and get. So I was able to carry that with me in a, I'm going to keep living for my mom because that's what wanted. And that's a very privileged and lucky place to be. I've heard many stories from caregivers who weren't able to make that choice. But I think that's how I was able to do it. And the fact that I had such an amazing partner in Seth. Yeah. You just smile. He smiles. He smiles. He smiles. He smiles. He smiles. I think that I had something that I could lean on and someone who was willing to be there for me through that time, and I needed it.

Can you take me back to where you were? Because I've heard you say that this was your first real grown up relationship, right? Yeah. Now you're facing not just loving this amazing woman, but you're facing walking with her through something that's very difficult. What is it like for you as an early 20s kid, basically, and this woman you're falling in love with is facing this huge thing, what is it in you? And is it the social work background of your family? What is it in you that made you say, I'm going to stay through this and I'm going to walk with her through this?

I mean, there was never really... I mean, I didn't really think of an alternative. We were very in love. It was the first time I was really very in love with anybody. I was so happy, and she's so wonderful that the The idea that this would be a thing that would make me not want to be around her anymore is nowhere near where I was at at the time or since. Yeah, it didn't even occur to me. Once you're in a relationship with someone, then these are the things you deal with together.

Together, they had a lot to deal with. Figuring out how to be in a real relationship for the first time, navigating careers that were taking off, all the while trying to keep up with what was happening with Adele and Scott back in Florida. Adele had been an elementary school teacher for 35 years. She was a doer, always the class mom, quick to tell a corny joke, and she would whip up enormous meals for Thanksgiving and Passover satirs. But now, diagnosed with Alzheimer's, she was changing, and she knew it.

Early on, my mom is, yes, these things are happening, and she's showing signs, but she's also very very much aware and alert in the beginning, and she's resistant and feeling defensive and obviously scared. She had seen both of her parents, so it was like, obviously, she was terrified.

Adele didn't want anyone to know about her diagnosis. She had a lot of shame around the disease. Scott was her primary caregiver.

It was a struggle in the beginning. Once my dad realized we needed some help, he would bring someone in for a few hours. I would say it was a between my mom accepting it, having to play along and this woman is here as a housekeeper, creating a reality that fit and worked and made things okay. Then, of course, my mom was more advanced and didn't really have a fight against bringing people in, which we're so lucky that we really didn't... It wasn't a struggle in that way for a long time, and I know that that's not the case with so many people. But my dad is an amazing husband and a real superhero and a man. And so he struggled bringing help in.

Over time, caring for Adele became a 24/7 job. She needed someone to clean and feed her, someone to make sure she didn't try to escape the house. Scott even had to put wax paper on the windows to keep her inside. Lauren could see that caregiving was taking a toll on her dad.

I did go to therapy with my dad a couple of times.

That was probably more helpful.

Which was really helpful. Navigating that relationship, I think early on, I think it just takes a long time to find your role, especially in our family dynamic where my dad was the primary. It was honestly through therapy that my therapist was like, If your dad wants to be the primary caregiver, he's her husband. Let him be the primary caregiver. My therapist was like, You be his caregiver.

But by the fall of 2011, the situation was becoming too much to handle. Seth and Lauren flew down to Florida. Seth's parents came, too, for a family visit with Lauren's parents.

Ultimately, we had actually a conversation. We included Seth's parents in it. Just a whole family conversation of this situation that you're living in, where it's basically the two of you alone in this house in Florida, is not sustainable. It was clear that it was exhausting my father and affecting his health and was going on for no reason because we were lucky that we could afford more. Basically, once we realized that they were in Florida and my brother was up in the northeast, and we were on the West Coast, and it was like, Well, why are they alone? When we brought them out here, that was... Honestly, it had gotten so difficult, the distance, that it was like, yes.

It's time. This is when, in 2012, Scott and Adele got a duplex in LA near Seth and Lauren. Scott lived on one side, and Adele was on the other, with a 24-hour caregiver looking after her. Yeah.

We set them up in a great situation, and she had care. My dad was able to be her primary caregiver till the very, very end, but also with professional help, which is huge.

I know this journey well. I had my dad with me at home for 11 and a half years until he had a fall and needed professional care. Letting in that help, as necessary as it may be, brings up a lot of feelings. You feel guilty for needing it. You feel relieved when it helps. Sometimes you feel both at the same time. All of those feelings are valid, but they're also exhausting. At the end of the day, if you're blessed enough enough to have the resources, getting that help can be exactly what everyone needs, including the person you're caring for. After the break, we're diving into how Seth and Lauren turn the shame and silence around Alzheimer's into a movement that's changing the conversation for families everywhere.

Now we'll turn to Mr. Seth Rogan. Mr. Rogan, welcome and please proceed.

In February 2014, Seth Rogan went to Washington.

Thank you for the opportunity to testify today and for the opportunity for me to be called an expert at something because that's cool.

He was there to speak before the Senate Committee on Appropriations about Alzheimer's and to call out the lack of conversation and funding for the disease.

First, I should answer the question I assume many of you are asking. Yes, I'm aware this has nothing to do with the legalization of marijuana. In fact, if you can believe it, this concerns something that I find even more important. I started dating my wife Lauren nine years ago when her mother was almost 54 years old.

Seth described how Adele began to forget who she was, who her loved ones were, and eventually needed around the clock care by age 60. He shared how this was the first time he saw Alzheimer's up close.

Another thing I didn't realize until I was personally affected was the shame and stigma associated with the disease. It was before I was born, but I'm told of a time when cancer had a stigma that people were ashamed by. Celebrities and other public figures that were stricken would hide rather than be voices of hope for people in similar situations. And although it's turning, this is currently where we are largely at with Alzheimer's disease, it seems like.

This video has almost seven million views on YouTube, and I think that speaks to the fact that at that time, and even to this day, we don't hear enough of these stories. To see someone speak so openly is powerful.

People look to their government for hope, and I ask that when it comes to Alzheimer's Alzheimer's disease, you continue to take more steps to provide some more. I would like to thank the committee again for the opportunity to share my story and to voice my wholehearted support for the continuing work that pursues a cure for Alzheimer's disease. Thank you very much. Thank you, Mr. Hogan.

That was great. That was very, very good.

Was that a little harrowing for you or were you like, let's go? What were you thinking when you went?

I don't know. I didn't have a... I hadn't had a lot of experience with Washington DC as it were. I mean, it was quite weird, to be honest. It's so nice that it was filmed and found an audience. I think what essentially happened is nobody showed up. I don't understand how that worked. You're testifying in front of Congress, as it were, members of Congress. There was one guy there, 30 empty seats or something like that. They can at least take away the empty seat. You don't see it's specific Basically, how many people have opted out of this? To me, that was just very disheartening and confusing. As someone with a big ego, a little hurt. I wound up just talking I thought that a lot, which I think drew attention to it also just as I was doing talk shows and interviews and things like that. But then I think it was because of that, a lot of people watched it and it became highly viewed, which was great. I don't know. I remember wanting to be honest and give my perspective on it and expose what I think are pretty simple hypocrises as far as the funding of Alzheimer's research in comparison to other things that are much more treatable and that we know much more about.

I'm glad so many people ended up watching it. It became like one of C-Span's most viewed videos, which isn't saying a ton, but it's good for that.

But it shows how many people needed to hear it.

That's what I think, too. That lack of attendance shows how little thought was given to Alzheimer's at the time. Thankfully, that's been changing over the years, and Seth and Lauren have been a big part of that shift. By the time Seth testified, they'd already been doing advocacy work through Hilarity for Charity, their foundation, which started as a variety show in LA in 2012. It's now a nonprofit helping families struggling with Alzheimer's care today. It also helps increase support groups nationwide and helps advance cutting-edge research.

Hello. Thank you. Come on. It's going to be a wonderful night. There he is. Ladies and gentlemen, Aziz Ansari. Oh, wow.

Thank you. Can you tell me about the very first variety show you guys put on for Hilarity for Charity? How did it all come together? How did you get people to say yes? Were you scared to do it? Were Were you nervous about turnout? Tell me about that very first one.

Yeah, it was a pretty like... I think on its surface was very intuitive, which was like, we're comedians, our friends. We come from a group of people who put on variety shows, basically. It was intuitive in a lot of ways. It was just like, Oh, we'll put on a variety show and we'll give the money to Alzheimer's charity. I think, yeah, in the first one, we didn't even necessarily I don't necessarily mention Alzheimer's. It was before we were talking about this all the time. I think it was before we ourselves really had a clear and simple and honest way to speak to all this stuff. But we got there over the years. Yeah, a lot better.

Through that first variety show, they raised $300,000. They've held more fundraising events, have awarded over 475,000 hours of in-home care relief with their Caregiver Respite grant program. And even produce a documentary film called Taking Care, which honors Adele's life and brings attention to the disease. I love how much they're doing for the cause while still keeping things fun. I asked Seth about finding that balance. Humor is in the name, Hilarity for Charity. Seth, can you tell us why is humor so essential to this work, in your opinion?

I mean, it's just the only thing we know, really. I mean, we joke that if we were chefs, it would be called baking for charity or something. It's just our only thing. We both are writers, and our friends are mostly comedians, and the people we have access to to occupy our shows are largely comedians. It's all week and uniquely offer, I think, in a lot of ways. It's nice that it is a welcome contrast. I think it does make it an easier subject matter to talk about and think about. If you're going to go to a charity event for something outwardly depressing, it's nice to know that it at least is like a package in an entertaining fun way. It wasn't some grand plan on our part. It was really just very organically what we had to offer.

It was also a way to channel the sadness and helplessness of watching Adele decline more and more. For all the advocacy work, all the events and fundraising, nothing could stop the progression of Alzheimer's. By 2020, after 16 years of living with this disease, Adele's journey was coming to an end. How did you all navigate the grief that followed? Because you have the anticipatory grief. You know it's coming. And then, of course, it happens. How did you all process that together?

It was so surreal. It was like, Okay, this thing that I've been afraid of and anticipating with immense grief for 16 years is happening. It was just so hard to be like, Oh, it's finally here. I sat with her. We all sat with her in those last weeks. I had a lot of moments where I said goodbye and said things that I needed to say. Then she passed away. That week was, again, it was so surreal. I remember I kept saying, Seth can tell you, I kept saying, Can you believe my mom is dead? My mom died. My mom is dead. Can you believe it? Can you believe it? Then After the first week without her, and I hope I can say this and not sound insensitive.

I know what you're going to say.

I felt lighter than I had felt in 16 years.

Yes, honey. I know. I know.

And I had mourned her for 16 years. And it's weird to say this, but what was pain when she was alive made it hurt so much less after. And I have not lost someone quickly. I have only lost someone over a long period like this. And I don't think one is better than the other. But I had mourned. I had grieved. I haven't spoken to my mom in eight years.

Yeah, that part.

You know what I mean? And sure, I spoke to her, but I had a conversation with her.

Not a conversation. Right.

And so I was already used to missing her. I missed her. So I sat in front of her for years, desperate for her. And so I didn't have to get used to it. And so it was like, oh, I still miss her in the same way. I still bring her with me in the same way in my heart and in my experiences. But I no longer felt that anticipatory grief of, is she in pain? I'm certainly in pain. How will this end? I knew how it ended, and we all survived.

Up next, we're zooming in on how Seth and Lauren are continuing to make Adele's legacy shine with Hilarity Ready for Charity. That's after the break. Seth, you've spoken about how the greatest, or one of the greatest barriers to caregiving is money. And thankfully, you guys were blessed to be able to take care of Adele, but a lot of people can't do that in their homes. And so you guys have come up with this great grant program, Through Hilarity for Charity. I would love to celebrate that. Right now, can you tell me about that and how you choose the people who get the grants and how they can apply and all of that?

Yeah, basically, we saw that our money made the problem much easier. Being able to afford 24 hours a day in home care for Lauren's mother just was a life-changing thing for many people. That became a very immediate thing it seemed like we could achieve, was just giving grants so people who can't afford that could get in-home care for free, basically. Then they would apply through the charity, and there was a very sad process where they would go through these applications and pick who appeared to be the most, I guess, immediately in need of these grants.

Every month we would read the applications, which was… Gut-wrenching. Gut-wrenching. Okay, so this one is an interesting one.

Mary Evans is caring for her brother who has Alzheimer's.

She has lost her home due to finances, and they moved into an apartment together.

She is his full-time caregiver. She quit her job, and she's having a hard time paying for medications right now. In Seth and Lauren's documentary, Taking Care, there's this scene where they're sitting around a table going through stack after stack of caregiver applications. You can see it on their faces how every story hits them. Most moving of all is when they make the calls to recipients, letting them know they've been awarded a grant.

Hello. Hi. Is this Mary? Yes. Hi, Mary. This is Lauren Miller-Rogen, calling from Hilarity for Charity. Oh, how are you? I'm doing well. I'm here with my husband, Seth. Hi. Hi. How are you? Good. We read your application and it was so very moving. We'd love to award you 15 hours of care a week for a full year, completely paid and taken care of. Is that something that could be helpful for you?

Yes, definitely.

Every single person who applied deserved it. We only had and still only have X amount of dollars, and so we unfortunately cannot. I think we fund something 20-something % of the applications we receive. While it was gut-wrenching, it was also honestly amazing. You guys, thank you so much.

I and the committee and everybody, thank you for being a part of this present.

You're so welcome. Thank you for letting us be a part of your life this way.

Okay, thank you. I'm looking forward to the call tomorrow. What did you find caregivers need most? It might be a cup of coffee in time to breathe. I mean, I'd love that. But what did you hear the most from the applications?

I think that caregivers are just too many of them are lonely, and they are doing this all on their own. They have no respite. They have no community. They have no support. And so I think for us, it was like, All right, let's give people actual respite, literal hours where they can leave their home or go to another room and close the door so they can reset, but also provide community, because I think that just getting through this alone is so hard, and it makes it worse. I think that I wish that caregivers could have more community, they could have more respite. I wish that probably a lot of caregivers could pat themselves on the back a bit more than they probably do. Oh, wouldn't that be lovely? Because I I've seen it over and over again. I'm not doing enough. I'm not doing enough. And it's like, Oh, my God, you're doing everything you possibly can.

This work lifting up caregivers and ending the silence around Alzheimer's, it's the complete opposite of where Seth and Lauren began their journey. Remember, Adele had shame around her diagnosis. She didn't want people to know what she was going through. Now, her daughter runs one of the most successful and visible Alzheimer's organizations in the country. I wanted to know what Lauren thought about that transformation. I think it was very powerful, Lauren, that your mom didn't want anyone to know that she had Alzheimer's, but now you run an organization that is all about educating and talking about this disease There's a whole documentary about her journey. What do you make of that, and what do you think Adele would think of Hilarity for Charity?

Yeah. She really didn't want us to talk about it in the beginning, but I... Number I'm a storyteller, and I've never been good at holding it in. I'm just not. I write, I share, I talk, I have great friends who let me lean on them. I had to do that ultimately. But then really came back around to, honestly, before the disease started, before the defensiveness set in, before the fear set in, she was a woman who was really passionate about stuff. She always used her voice. She was always very active in her school and the school board and our synagogue and all of her activities. She was the class mom, even though she had a full-time job, she was always her class mom. I just was like, I'm not going to listen to the voice that came out when she was already sick. Because that wasn't her. That wasn't her. Who she was was someone who cared passionately about helping other people, teaching people. And so really, I just channel that part of her to be like, No, you want something, you don't like the way something's going, you be the one to change it.

And they really have changed things, not just through the money they've raised and the caregivers they've supported, but also by shifting the whole conversation. Sitting there with Seth and Lauren, I kept thinking about their younger selves, two 20-somethings falling in love and suddenly facing something most people don't expect to deal with until much later in life. But they had grit and the resources to give Adele the care she needed until the very end. Not to mention, they were able to build a stronger relationship together. Now, they're sharing those resources and wisdom with other caregivers. They're teaching She, just like Adele did for so much of her life. And that's something I know she'd be incredibly proud to see today. Squeezed is a Lemonada Media original. I'm your host, Yvette Nicole Lisa Fou and Hannah Boomershine are our producers. Muna Danish is our senior producer. Bobby Woody is our engineer. Our theme music is by Andy Kristenristen's daughter, with additional music by 8: 00 PM Music. Jackie Danziger is our VP of Narrative Content. Executive producers are me, Yvette Nicole Brown, Jessica Cordova-Kramer, and Stephanie Wittelswax. This show was created in partnership with the Robert Wood Johnson Foundation, a leading national philanthropy dedicated to taking bold leaps to transform health in our lifetime and pave the way together to a future where health is no longer a privilege but a right.

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