Episode 1: Care Partner Reflections With Robert B. Weide

Oscar: Hello everyone, and welcome to “The Collective Mind” podcast. I'm your host, Oscar Sullivan, and I'm excited to welcome you to this new podcast by CurePSP, which aims to educate and share the experiences of our community members, to amplify their voices and spread awareness. Every day, I meet amazing, resilient people, and I'm looking forward to sharing their stories through this platform. I’ll also be talking to researchers and doctors who are at the forefront of improving treatments and care for those living with these diseases, and I'll be doing my best to break down these complex topics for fellow novices like me.

You might be familiar with my first guest if you're a fan of Curb Your Enthusiasm: Bob Weide was the principal director and an executive producer of Curb for the show's first five years, with his name infamously flashing at the start of the credits. Bob is a screenwriter, producer and director, and his latest documentary, Kurt Vonnegut: Unstuck in Time, is dedicated to his late wife Linda, who passed away from PSP in 2022. Both Bob and Linda were friends with the writer Vonnegut, and the documentary features a scene of the couple managing Linda's diagnosis, a crucial moment of awareness for PSP in a popular film. Bob and Linda were soulmates and built a special bond that Bob continues to memorialize. He wrote an obituary for Linda in the LA Times that went viral for capturing the profound connection that they had, a marriage built on respect, admiration and making each other smile. They cracked jokes with each other until the end and Bob ends the obituary by saying that “for those who never knew her, I'm sorry for your loss.”

Bob talked to me about his experience as a care partner, the job that he will always be most proud of, and the lessons he learned along the way in navigating this grueling, rewarding and precious journey.

Oscar: Bob, thanks for being here. You have a personal connection to PSP and to start I’m wondering if you could share a bit about your journey with finding out about PSP.

Bob: Well, first of all, PSP is one of those things that nobody ever hears of until it affects them personally, because it is rare, it doesn't get a lot of publicity, and I think those two things are uncommon. I think there are these diseases that the consensus is, “well, this is just too rare for us to really get on the megaphone about or try to raise money for, because it doesn't affect that many people.” But when it does enter your life, it affects everything. My connection is that my wife, Linda, passed away on Christmas day in 2022. We had been together for 28 years, married for 25, I never believed in the concept of soulmates until I met her, so it does feel like my other half is gone. And that's a process in itself, which maybe we'll talk about. But Linda was a perfectly healthy person. She knew about nutrition, she knew about exercise. She really took care of herself. Nobody would believe her age if they were to find out. Although her age was kind of a state secret, she looked 20 years younger than she was. She was in great health, and by the way, I should say the best posture of anybody that I have ever met. She had been a dancer, not professionally, but, you know, she did ballet years earlier, and she was gorgeous. If you were to see me right now and you saw a picture of Linda, you would say, “how did this guy wind up with this beautiful woman?” But I did. I lucked out. I charmed her, and we had a very, very happy marriage.

So I would say around 2016 I started to notice little things that seemed slightly off because we knew each other as well as two people could know each other. And these things were so subtle that if somebody asked me, “well, what are you talking about? What are you seeing?” It would have been hard for me to even articulate what it was. I just felt something was a little off. And then I felt those moments happening more and more, but again, very, very minor, and I expressed my concern to her. And I think a lot of people have this reaction, that she was sort of in denial about it. She wondered what I was going on about. At least she said she did. And I didn't want to push too much, because, how do you tell somebody? I think there's something wrong that maybe we need to get checked out, and then there’s little mistakes that she would make and things that were just sort of multiplying. Or I was going to say there were no signs of her balance being off, but actually that's not true. We would go for bike rides every now and then. We weren't big bikers, but every couple of months or so, we'd get on the bikes, and one day she fell on her bike. And, it just seemed to be an anomaly. She fell, she braked wrong, or whatever, got back on, and then later on that same bike ride, she fell a second time. And that was concerning, but still, I certainly didn't think it was a sign of a bigger picture.

Oscar: Unexplained falls are a common aspect of a PSP, CBD or MSA diagnosis. They can pose injury risks that lead to further health complications. If your loved one has suffered a fall, it's important to stay calm, ask for help and get up safely and slowly. After a fall it's crucial to review and address preventative measures such as home modifications like grab bars, assistive devices like canes and walkers, and regular checkups with your healthcare provider to discuss any changes in mobility or balance. Visit CurePSP’s Assistive Devices and Adaptive Equipment page for more information.

Bob: But these moments of my concern kept growing, and I thought, “Could she have early Alzheimer's? Is that what's going on?” One exchange that we had that was kind of funny, and humor was a big part of our lives, and humor helps get you through a lot of this stuff. I remember one day she was getting annoyed at me for suggesting that maybe we see a doctor. And she said to me, “What are you saying? You think I should get my head examined?” I said, “Yes, that's exactly what I'm saying. I think you should get your head examined. I think we need a doctor to examine your head and see what's going on.” And we sort of made a joke out of it, but the day came that she walked into my office here and she said, “You know what? I think you're right. I think something's going on, and maybe we should go to a doctor.”

Now, we had our annual physical scheduled soon after that, so I said, “Good, we'll start with our regular internist. Tell him what's going on and let him take it from there. Suggest who we see next.” So she came into my room and said, “I think you're right. I think something's going on.” The way she explained it to me, this is from the patient's view, not my view, is that she had been aware of making a lot of little mistakes, whatever it was, and the math and keeping our books and paying checks or speaking or emailing or whatever. She was noticing these little errors, and she would always write it off. She'd always find a way to write it off, like, “Oh, well I'm tired. I didn't sleep that well last night,” or “I haven't had my coffee,” or “I'm not feeling well,” or “This was going on, and this was a distraction, so I got confused.” She'd always find an excuse. I mean, we all do that. And she just noticed the excuses were piling up. And she thought, “I think Bob's right. I think something's going on.” So we went to see our internist, and I told him what was going on. And he did the first test, just those things like counting backwards from seven by counting backwards by seven from 100 and touching your thumb to each of your fingers and whatever, drawing a circle and a square or whatever, and some little memory things repeat these words, that kind of thing. And she did okay, but not great. Something was off, so he recommended a neurologist for us to see. And we went to see the neurologist. Very nice guy. He did some tests, and then he sent us to somebody else. I don't know if it was a neurologist, a psychologist or what, but they give you that test that takes most of an afternoon, and the test is supposed to sort of gauge different parts of your brain as to what's fully functioning and what may be a little bit impaired or whatever. And what's interesting is that her memory was always very good. I mean, up until the time where it was difficult for her to speak, I'd say her memory was probably better than mine, because I would ask her about something that was on TV the other night, “What were we watching?” And she would know, or I'd say, “Who told us that story about their grandfather recently?” And she'd say, “Oh, Keith when he was over for dinner.” I'd say, “Oh, right, her friend, Keith.”

So I remember one day she was watching TV, and I walked in the room, I was writing something, and there was a phrase I couldn't think of, and I said, “What's the phrase that means, ‘I'll do something for you, and then you, in turn, will do something for me?’” And without missing a beat, she said, “Quid pro quo.” I said, “Oh, that's it. Thanks.” So I mean, her memory was great, and this test that she did mapped out different functions of the brain. Anyway, at the end of the day, they thought what she had was PPA, primary progressive aphasia, which is what Bruce Willis has. And you know, I'm sure anybody listening to this who's dealing with this illness has stories of misdiagnosis, because there's so much overlap in the symptoms of these different sorts of progressive neurological diseases that they're often misdiagnosed. And a lot of times somebody who doesn't really know just writes it all off as Parkinson's, because again, the early stages seem to be similar to Parkinson's. So her first diagnosis was PPA, anyway, without going into a lot of detail, finally, it was determined that it was PSP. And of course, we were learning about all these diseases as we're hearing about them for the first time. Because, like I said, who knows about them until it affects you? And I will say I was a little bit annoyed, because my understanding is that the test for PSP that is pretty definitive, has to do with eye movement. And if they know the test to do, to check for your eye, you know the kind of eye movement where they take a pin and raise it lower, left, right, and you follow with your eyes that they can, you know, PSP presents itself in a specific way. And this neurologist never did that, but in any event, whether it was PPA, PSP,  none of these things are really treatable in the conventional sense, as far as medication or whatever. So it's not like had we known it was PSP a year earlier anything would have really been different, but that was how the diagnosis came about, and that is how we learned that we were going to be living with this illness.

Oscar: Yeah, it's a really common experience. Pretty much everyone has to go through what seems to be some form of misdiagnosis or confusion, and unfortunately, at the moment, there's not really a test, except until the symptoms are pretty present and visual.

Bob: I talked about that phase where I was having trouble even articulating what I was noticing about her that was off. And then finally, there was something specific. It was her speech, and her speech started to slow down a little bit. There were these interesting pauses in her sentences. And the way I described it was, it was like somebody for whom English was a second language, who was very, very fluent in English, but who still had to think about finding the right word. So it sort of slowed down. It changed the cadence of her speech, and that was unusual.

Oscar: Slowed speech is another common symptom of PSP, CBD and MSA. It can be frustrating for the person experiencing these changes to not be able to express themselves clearly, so patience and grace are key. Speech therapy can help one adjust to the changes and learn shortcuts for effective communication. Communication aids, like text to speech devices are another potential remedy that CurePSP is monitoring as technology advances. Once again, visit our Assistive Devices and Adaptive Equipment page for more information.

Bob: And during the time that I was meeting with a neurologist and saying it's hard for me to even articulate what's going on. Finally, at one point, I called his office, I said, “I've got something to pin this on. It’s her speech, her speech is changing,” and maybe that helps us sort of narrow down the possibilities of what this is. And he said, “Yeah, that's an important thing to note.” And that's when they started to bear down on the diagnosis.

Oscar: Yeah, you mentioned noticing all these changes and collecting your observations. It's very common for people experiencing it to have more knowledge than a doctor. And I'm just curious, were your experiences able to help at all?

Bob: The tricky part of PSP, at least in my experience with Linda, is that for a long time it's very slow-moving. And you think, well, maybe this won't be so bad. Or maybe we can really slow this down, or stop it, and then it speeds up. At least again, that was our experience. Then it was like the decline became more rapid, and it's frustrating, because there's nothing you can do to treat it. And that's where the emotional part comes into play, the supportive part. What you can do if you're the caregiver, family member, loved one of somebody who has PSP, is just be there for them, because there's nothing worse than having a scary disease and feeling alone. And I think knowing that you have a partner, knowing that you have somebody who cares, who loves you, who expresses that. And in my case, I really had to stop working. I stopped everything. My job became to take care of her. It was out of my whole life, my whole career, the job I'm most proud of. And we did have a caregiver who came about four or five days a week, for maybe five hours a day, and that really helped, because that allowed me to go out shopping and do errands and walk the dog and all that. But I was still her primary caregiver, and I was there at night, and you know, those responsibilities just pile up. They add up, and it gets frustrating.

I'll tell you something else, if you don't mind me just sort of going into a running monologue. A very shared experience is the frustration that people and caregivers have with themselves for the times that they lose their patience. And it's going to happen: you will lose your patience, because you always feel that you're just at the end of your rope, and then once sleeping issues come into play. Because my feeling was always well, my days are very, very difficult, but at least at night, I can go to sleep and sort of shut it down and recharge my batteries, and then when she needed all kinds of assistance during the night, going to the bathroom, whatever, adjusting your pillow, whatever it was now I wasn't sleeping. So now on top of it, on top of the daily frustration becomes sleep deprivation, and that's when you start to lose it. And you know now that she's gone, one of the most painful parts is reflecting back to times that I lost my patience. I would raise my volume with her, kind of shout at her, or say something that was uncaring. And everybody on this PSP page relates to that experience. And if their loved one or their spouse is gone, they're beating themselves up over it. If their loved one is still here, it's like, “Oh, last night I yelled at her, and I've been feeling terrible all day.” It just happens. And as I say, I'm still processing that part of it. Now, don't get me wrong, 99% of the time I was an ideal husband, but everybody who witnessed what was going on say they can't believe how dedicated you are. And it's like, well, yeah, what else am I going to do? Just go bowling. I mean, come on. But of course, the thing that sticks in my craw still are those isolated moments where I lost it and shouted at her. So if you're dealing with this issue right now, just know it's going to happen. Don't beat yourself up, but be mindful of it and think about it and try, try to hold on and to speak kindly and to not lose your temper, because you will, no matter how justified you are, you will regret it, and you'll be left with that thought and wishing you could go back and have a redo.

Oscar: Yeah, I mean the nice thing at least is that you know you're always going to be there, so there's always opportunities to continue showing support. What were your days like together during that period?

Bob: Well, I will say this about Linda. The frustrating thing is, you can take care of yourself as well as she did, and be as healthy as she was, and eat right and exercise and do yoga and not eat junk food and do all that stuff and still be hit with this insidious disease. It's so unfair. But the lesson is, it's important to be as healthy as you can be going in. If you're somebody who sits on a couch all day eating potato chips and watching TV and you don't exercise and you don't eat and you get hit with something like this, you're in real trouble. Her baseline health was so good going in that it just really helped. It didn't stop it or prevent it, but the stronger you are going in, the better off you are.

Oscar: In light of drug therapies for PSP, CBD and MSA, physical therapy is crucial to managing symptoms. It can help improve mobility, enhance balance to prevent falls and slow the decline in physical function. Consult with your healthcare provider to develop a personalized physical therapy plan that addresses your specific needs and maximizes your quality of life.

Bob: And I will say this, what happened ultimately was that she aspirated. She aspirated on December 7, and it was the first time she had to go to the hospital. She had stayed home with me and a caregiver, but the aspiration took her to the hospital, which started a downward spiral from which she never recovered, and I did bring her home. She died at home. She died in her bedroom, in her home, and in my arms. But up until the time she aspirated, just less than a month before she died, her health within the context of having this disease and her abilities were as good as anybody's that I'd heard of. She had always worked out, she had a workout regimen. So even when the disease hit, and even when she wasn't able to drive, I would take her to her trainer. She had a trainer that she would see once a week, and he had known her. He'd been working with her for like, 25 years. She continued to go to the training. Obviously it had to be modified once balance issues set in, and she was given just small free weights, like three pound weights or whatever, and resistance bands and stretches. She continued to do all that until the day she aspirated and went to the hospital. And you hear of other people's stories, which are very sad, where they just can't do anything. They sort of sit and stare and they start to check out. And Linda was always present. She knew where she was. She knew what was going on. She was exercising. Now again, everything changes. You have to now puree their food. You've got to spoon feed them. You've got to take them to the toilet and help them in the bathroom. So you just have to be prepared for all that is going to happen. You have to dress them. I would shower Linda, but I took such pride in all of that. You take a vow if you're married in sickness and in health. But even without the vow, I would have been there for her, so you can take deep pride in that you're actually impacting a loved one's life in a positive way.

But you get to do all that. And the other thing we did was that we went for a walk. We'd always walked around our neighborhood. We'd go for this walk that was several blocks, it would take about a half hour. And then once walking became a little more difficult for her, we cut off one of the blocks, and the walk was 25 minutes, and then 20 and it was less and less time and a shorter and shorter walk. And then the walk just became on our own street, where we'd walk to one end of it and then to the other end of it, and then we'd come back home. And then even that radius got smaller. Now, when I say walk, she could not have done this on her own. She was on my arm, and of course my shoulders, my neck, my back, were always hurting because of supporting Linda, again, a small price to pay, but the fact that she made the effort, and sometimes she didn't want to, sometimes she didn't feel like a walk. And I'd say, “No, we've got to do this, because the day you stop walking is the day you're homebound, and you don't want that.” So even if we just walked for three minutes, let's get out and do it with what you're dealing with. You still have to keep your health as optimal as possible. And she was doing great. And then, you know, it just gets sadder and sadder. That's the reality, it became difficult for her to speak. So sometimes she would write things out, and then her handwriting became very hard to read, and then ultimately illegible. And then I made picture boards so there was a picture of a toilet, picture of a bed, picture of a TV, so she could kind of point to what she wanted to communicate. Then even that became difficult. On a piece of paper, I put a line down the middle. On one side, I wrote “Yes.” On the other side, I wrote “No,” so that I could ask her a yes or no question: “Do you need to go to the bathroom?” “Do you want to go to bed?” “Do you want to watch TV?” And she could just point to yes or no. So you find clever ways to work with what you're dealing with, but then eventually, all of those start to deteriorate. And I wrote an obituary for Linda when she passed, and I mentioned PSP in the obituary, and after I mentioned progressive supranuclear palsy, in parentheses I put, “Google it,” because I wanted people to learn about it. And people did. People got back in touch with me and said they had read about it. But the other thing I put in the obituary is that with diseases like this, sadly, the house always wins. You know what the end game is going to be. Don't know how it's going to come about or when, but that's the inevitability of it. And then you enter a new phase of your life. You know, once your loved one is gone.

Oscar: That's interesting that you say she was so present up until the end. Because that's not very common from what I've heard.

Bob: I'll tell you this, at first she was diagnosed with primary progressive aphasia, and then it was progressive supranuclear palsy, which was the accurate diagnosis. And at the time she said, “You know, it's like switching deck chairs on the Titanic, it's the same thing.” And I said, “No,” I mean between the two, as awful as it is, I'd rather have PSP, or I'd rather she have PSP. Why? Because it's technically not a form of dementia. Well, it's not a form of dementia, whereas PPA is. With PSP, no matter how bad things got, no matter how difficult it was to communicate, she always knew who she was. She knew who I was, she knew where she was. I could say I love you a million times a day. She would hear it, she would get it. And with different forms of dementia, Alzheimer's or whatever, when your loved one doesn't always recognize you, and you know they don't know what's going on, that, to me, is a real nightmare. And I almost hesitate to say that, because there are people dealing with that, and I hate to use a word like nightmare, but I'm sure they can back it up. You know, the fact that I could look in her eyes and tell her I loved her, or, feeding her, you know, spoon feeding her, whatever, and she knew she was loved, and she knew her husband was taking care of her. And if I were to look in her eyes and see that she was just gone and not knowing what was going on, that would be a real heartbreaker on top of the heartbreak we're already dealing with. So the fact that PSP is not a dementia helps a little bit, and by the way, you can have a combination of PSP and something else, right? You can have PSP and Alzheimer's or whatever, but I'm just glad that Linda's mind was actually quite sharp up until the very end.

Oscar: Something you're making me think about given that you're her primary caregiver and you're spending so much time with her, I've heard from some other caregivers that it's a lot of work. Obviously, you’re going to do it every time, but it was also kind of nice to be able to spend so much time with them. As you said, you weren't working at that time, and so you're spending a lot of time with Linda. And I'm wondering, are there any moments that felt special from that time that you might cherish?

Bob: When somebody loses a spouse, the thing you hear all the time, you know, this is obviously still all very emotional for me and I cry a lot. I cry every day, and sometimes it's a full-on sob, and I let it take me. And by the way, that's my number one recommendation for anyone who's dealing with this, either when their loved one has a disease or they pass, it's just to let your emotions take you wherever they take you, and don't sweep them under the rug. That's not healthy. So often when somebody talks about losing a spouse, the the phrase you hear all the time is, “I wish I had them back for one more day, just one more day,” to say, “I love you” again, to hold their hand again, to go for a walk, to sit and watch TV, just to have them again, even in a diminished capacity, “I wish I could have them back for one more day.” And that phrase always stuck in my head. So when Linda was still here, no matter how diminished she became, every day we woke up together was another one more day. It was like wishing you could have one more day and getting it again and again and again. So that was a very special kind of realization, just the fact that I have another day with her. I can help her with something again, I can shower her, get her dressed, feed her, take her for a walk, whatever, I get to do that. You consider it an honor to be able to do that. And every day they're there again, no matter how diminished, they need you. And if you can fulfill that need, it's very special. And of course, with her, I said that humor was always a big part of our lives. So being able to make her laugh, coming up with a joke and seeing her smile, all that is special. And we never hesitated when she was in perfect health to talk about what some people consider difficult subjects.

I remember when she told me she wanted to have her brain donated for research in a PSP, which was a wish that was carried out by me as a donation to the Mayo Clinic. And again, I ask people to look into this. These are important things. These are very loving things you can do for your spouse, unless they say they don't want the brain taken, then don't do it. But I'm just giving you an example of the sense of humor that we had about this. One day we were having lunch, and she said, “You know, I've been thinking about it, I want to have my brain donated for research into PSP.” And the first thing I said was, “Okay, well, that's great. Can we discuss this after lunch?” And so that was the first chuckle. And then she said, “You know, I've always had this weird, irrational fear of waking up in a casket and not being dead, like they buried me prematurely.” And she says, “If I don't have a brain, I guess that takes care of that.” And that was the next laugh. And then I said, “You know, sweetheart, there's one thing worse than waking up in a casket.” She said, “What's that?” I said, “Waking up in a casket with no brain.” So it sounds morbid to some people, but having a sense of humor about these things and being able to laugh just really helps. And one day, I wrote on a piece of paper. I drew a line down the middle, and she really couldn't speak at this point. This was towards the end. I said to her, when you think about your own passing, how do you feel about it? And I showed her the piece of paper, and on the top I'd written “Scared,” and on the bottom, I'd written “At peace.”

And she pointed to “At peace,” which was a great gift for me, to know that she felt at peace with it, and she would not have she would not have lied to make it easy on me, that was a real answer. And that's something I still think about that helps, so communicate — communicate however you can, if it's with a hand squeeze or a smile or little note or a kiss, whatever, make sure they know you're there, even if they can't talk back. Linda said, before she lost her voice, “When you talk to me, even if I can’t talk back, just look in my eyes and you’ll see my response.” So keep the communication going.

Oscar: Yeah, that's great advice. I've seen that loved ones always appreciate you being present and whatever gestures they may be.

You end your obituary to Linda saying, “For those who never knew Linda, I'm sorry for your loss,” and I love that line. It made me laugh and gave me a sense of how much fun you two had together.

Bob: Yeah, the other thing I put in there, of course, you're talking about this obituary I wrote for the LA Times, which is not a conventional obituary. It was really my love letter to her, my public love letter. And people really responded to it. I did not put it up on social media, but somebody else did, and it became quite viral the last time I looked, which was a few days after it had more than 5 million unique visitors, and then it started being written up in other publications. People were covering it as news. “Curb Your Enthusiasm Director writes beautiful tribute to his late wife, Linda.” So it really took off because people just related to the emotion of it. And that was the closing line, I said, “For those who never got to know her, I'm sorry for your loss, which is truly how I feel. And the other thing I put in there that sort of described her sense of humor was, as I said, we talk about subjects that for some people, were difficult and this is while she was healthy, and we had bought our funeral plots years earlier. And I said to her, “Should we do our own inscriptions on our markers?” I said, “We're going to be buried side by side. What do you want your inscription to say?”

She looked at me, she said, “I'm with stupid,” which was such a great line. I mean, I make my living coming up with funny stuff, but nobody was as funnier than her. Your younger listeners won't necessarily know this reference, but the older ones will:  she was Gracie Allen to my George Burns. She always kept me smiling and laughing. Yeah, she was something But anyway, you were leading to something else about the obituary.

Oscar: I just really liked that line. I thought it was a good mix of humor and cherishing her and it gives me a sense of the relationship you two had.

Bob: She was really special. And the other thing I put in there was that she had died peacefully at home and in my arms. And then I said, “If you must die, try to do it in the arms of someone who loves you. It helps.” And people picked up on that too. So it was just something I wrote off the cuff, just what I was feeling at the moment, and it struck a nerve with people.

Oscar: It’s cool to do an obituary like that, because most of them are very factual, and that’s important, but you got a sense of who they were through that, and I enjoyed it.

I also want to talk a bit about Kurt Vonnegut, who obviously meant a lot to you and Linda through your documentary that's dedicated to Linda, and then her starring in the play “Happy Birthday Wanda June.” Vonnegut talks a lot about death, the impermanence of death, but what do you think about his ideas of death? And I also ask this because I've used his famous phrase, “So it goes” to help understand the randomness of death, but you're someone who spent a lot of time with him.

Bob: Yeah, randomness is the right word. Again, the fact that Linda did everything right, health-wise, and this insidious disease, the only way I could describe it was she was dealt a bad hand. You never know what hand you're going to get dealt. If I can use this phrase on your podcast, we used to joke because it's such a rare disease, and she got it, we used to joke that she had won the lottery. That's what we called it. But yeah, you're referring to a documentary I did called “Kurt Vonnegut: Unstuck in Time,” which came out in November of 2021. Linda died a year later, a year and a month. For listeners who are interested, not to plug it, but you might be interested, it's on Hulu and streaming platforms. It’s like $3.99 to rent, if you don't like it, I'll pay you back. But in any event, I'd been obsessed with Vonnegut from high school forward, and I was 22 when I started working on this documentary, for reasons that I won't talk about now but are covered in the film, it took me 39 years to make, and he died in 2007. The film came out in 2021, so it was really a sort of  lifelong project, 39 years.

So during the course of that I just idolized him, he was my literary idol, and during the course of making this film, we actually became very close friends, and in fact he encouraged me to marry Linda. I met Linda in 1994, September 30th, 1994 and he just loved her. He said, “When are you going to marry this girl? You know, this is a keeper, you don’t want to let her get away.” So I took his word very seriously, because he had helped shape me, and I did. It was the best thing I ever did. But he remained a very, very close friend to both of us and so a lot of his words were sort of inspirational to us in dealing with this. And one thing that I put in the film, as you see Linda, and you see the early stages of her diagnosis, she's walking and everything, but you can see things are a little bit off. And there's a line from Slaughterhouse Five where the lead character, the protagonist, Billy Pilgrim, is abducted by aliens. These aliens are very smart, so he's asking them these sort of existential questions. And the big question is, he says, “Why me?” They say to him, “Why you? That's a very earthling question, ‘Why you?’ Why anybody? There is no why. There simply is.” And that was, in an odd way, sort of comforting to us, because, no, she didn't do anything to deserve this. There wasn't anything she could have done differently. It just happened. There's no why. And comforting is maybe too strong a word, because that doesn't make the tears go away, but it's something to think about.

I will say this: Linda did literally die in my arms, and there's something very peaceful and beautiful about that, and having witnessed her death that closely, somebody who really was my other half, if I were a betting man, I would bet that we're still connected. And I like to think that she's still watching over me, as the cliche goes, I don't know that, but I feel it, and that that brings me some relief. But, you know, Vonnegut's joke was, Vonnegut would say, “If I die, God forbid, I want you to say, ‘Kurt is up in heaven now,’” then he'd say, “That's my favorite joke.” That was sort of his belief summed up.

But I'm very comfortable living in a world of maybe, maybe not. But even on that Facebook page, when I first started looking at it, I'd say, “Oh my God, what's going on?” Because somebody would say, you know, “My husband, Roger, is no longer in pain,” I think, “Oh my God, there's a cure.” And then they'd say, “He's with Jesus now,” you know, oh, slightly disappointed, but good for them, good for them to take that attitude that you know, and even in a secular way, I have that feeling that Linda's not in pain anymore. She's not suffering, I mean she had beautiful penmanship, which fell apart to the point where it was illegible. She had a beautiful speaking voice, her movements training as a dancer were just poetic and you lose all that. I remember, she was still keeping the books and writing checks. And it got to the point where I'd look at the check registers, and what she was entering in the check register was really hard to read. And I thought, God knows what the checks look like, that she's making out and mailing out to people. So I came and sat next to her with the register, and I said, “Sweetheart, you know your writing is really getting hard to read. I think I need to take over writing the checks.” And she said, “Okay,” and it wasn't a big deal. And she was great that way. But the point I was going to make was I sat down with the checkbook. I said, “Look at these entries in the register. I can't really read them anymore. I'm going to have to take over.” And now that I look back, you know what? It's like men I think are sort of hardwired to take care of the problem. So, okay, your writing isn't legible anymore. I'm going to pay the checks. Okay, I'm going to take care of this problem. Okay, you can't walk the dog anymore, so I'll walk the dog. I'll take care of this problem. Here's the part I forgot. And I tell caregivers who are listening to keep this in mind. I forgot to say to her, “It must be really heartbreaking for you to not be able to write anymore. It must be really heartbreaking for you to not walk the dog. It must be heartbreaking for you to not be able to just drive anymore, or to just even walk around the house. And I understand that, and I feel your pain, and I share your pain.” I left out that part, and I regret that, because at the end of the day, all we ever want to hear, all we really need to hear, are the words “I understand,” maybe even more important than “I love you,” because that's an easy one, “I love you.” “I understand” takes some effort, not just to say the words, but to really do it. And I forgot to let her know in those moments that I understood her pain, and again, she was very stoic about it. She didn't act upset, she didn't cry or anything. But for her to have such beautiful handwriting and to take pride in being able to pay the bills and balance the checkbook and all that, and then not to be able to do it anymore, I forgot to say, “I'll bet this hurts your feelings, and I understand.”

Oscar: Yeah, I mean especially with something like this, where the solutions are not very clear, it's definitely an important sentiment. One thing I was thinking about when you were mentioning faith and possible religion, towards the end of the Vonnegut doc, there's a line where he says that “The future will lie down at your feet like a dog who knows and loves you no matter what.” And I know you said you're not not technically religious, but it does feel like kind of in that philosophy, and how you've talked about her, there is a faith that you know your love persists and will always be there. And I'm just wondering, are there any times where you find Linda's memory today, and how does her legacy live on in you?

Bob: Well, I think love is the only real religion, and I think even organized religions, I think it always comes down to love. So I think you can be spiritual and I think you can be a loving person. You can make humanistic decisions in your life without having to believe in a deity, or, you know, any of that. And again, I don't knock that at all for people to do good for them. I mean that literally, but it all comes down to love, doesn't it? As far as my mindset. Now, with her being gone, she is never not on my mind now. We had a very close, really great relationship, really great marriage. And so grief is the other side of the same coin for as hard as you love, that's how hard you're going to grieve. And my life is still a life of grief. I have friends, I get out. I'm not hermetically sealed in the house. I go to movies, I see friends for dinner, and I've been taking little vacations, but grief is always there. Somebody asked me, “Do you wake up in the morning and have that moment where you remember what's going on and it hits you?” I say “No, because it never leaves me,” even during my sleep, really. And Linda is the default setting in my mind. Now there'll be a little distraction here. If a fire alarm went off in my house right now, I'd be paying attention to that. Maybe I'd forget about Linda for a few seconds, but then it would return. And I'm happy with that. I'm fine with that.

You know, people talk about, “Oh, well, it gets easier with time.” No, I don't need it to get easier. It's not like, “Oh, when will I be over this?” I don't need to be over this. I can honor her by thinking about her. And we talk about a kind of spiritual awareness versus a conventional religious awareness. I talk to her all the time out loud, as if she were here. And it is sort of like praying. It's like, I don't know that anybody's on the receiving end of it. But what's the downside? You know, pray if you want to, talk to your departed spouse if you want to. It's cathartic for me. It helps me to articulate my feelings by speaking out loud and I say, “Oh, you know, sweetheart, I think this salad came out really good tonight. You would love this, and telling her about what the dog did, what the cat did. We're big, big animal people. We've always said that we hope that our animals are there to greet us when we go. And I make jokes, I say funny things that would amuse her, or remember anecdotes or funny memories between us that would make us laugh. And I will laugh out loud, and I hear Linda laugh in my head, which was a remarkable laugh. So I keep the communication going with her. It doesn't involve having to go into a church or a temple of any kind. It doesn't involve having to go to the gravesite. No, that's where ashes are. I don't need to go there to speak to her. I speak to her all the time. So anyway, all of that helps. It does impact your life. And frankly, my experience is that it's a kind of PTSD in that something's always a little bit off. It's kind of like the obvious metaphor would be like losing a limb. You're not going to get that limb back. I'm not going to get Linda back. I'm not going to get that life back that I had with her. It's not that it gets easier so much as you learn to adjust, you learn to get on without that limb, because you gotta get up in the morning and you got to get through the day, and if your loved one is looking over you, they don't want you to just crumple into a fetal position and remain there all day. They want you to get up and have your life and have happiness too. So you get up and you do it. But I can, sort of sounds funny, but I can sort of celebrate my grief. In other words, how lucky am I to have somebody to grieve over? A lot of people don't. I had a great love in my life. A lot of people don't. So even if I remain, this sounds a little depressing, it's not meant to be. Even if I remain in this sort of state of limbo for the rest of my life I can handle that because I had my great love, and if the rest of my life feels like an epilogue or post-script, that's fine. I'm very lucky. I have a roof over my head, financially sound. I have food on the table. I have friends, I have books, I have movies, I have animals. I can get in my car and take off and go away somewhere if I want. I have a very, again this sounds ironic, but despite the fact that the center of my life is gone, I still have a very good life, because I'm fortunate. Got dealt a lucky hand in this case, a lousy hand in Linda's case, but otherwise have nothing to complain about.

Oscar: What’s your life been like, trying to get back to work and have some sense of normalcy?

Bob: Linda died on Christmas Day, 2022, and as you mentioned, I was the I was the primary director, the principal director of Curb Your Enthusiasm for the first five years, and directed the original special that was based on and then after the first five years, I went off to do other things, but I've always come back to direct one episode a year now, rather than the lion's share of episodes. And so I had committed to come back and direct an episode of Curb in February. Larry David and I have been friends since the early 80s. And I told him, “Look, you know, with Linda, I don't know if I'm going to be available.” He says, “If you can't do it, you can't do it, it's fine.” Linda was still alive at that point, talking, you know, like November 22 and then she died on Christmas Day. And one thing I did that really helped was I was not on anybody's schedule. Linda wanted to be cremated, which isn't, you know, traditionally Jewish, but we can do anything now. So the minute you say that you're in a queue and you're not going to get buried right away, it takes them a few days. And so I just, I just took my time. I took my time before I saw anybody. I took, like, a month to just sort of be by myself. I saw a few friends, and even went out to lunch a couple times. Even went to one movie, a movie that she would have loved. So I didn't cut myself off from everybody, but I sort of announced to friends, as well-meaning as it might be, I don't want people coming around. I want to be by myself for a while. So I took about a month to be by myself, and then I took a trip up to Santa Barbara, just to kind of look at the ocean for a while. And I have a good friend up there who's a very grounding person in my life, and then I came back, and actually was when I was up in Santa Barbara, which was in early February, is when I wrote her obituary. So I wasn't even in a hurry to do that. I just took things at my own time, at my own speed, and I suggest that people not feel too pressured about what you have to do and when you have to do it. I was thankful that I didn't have to write a eulogy to deliver and put on a suit and tie and stand behind a podium and weep my way through some speech in front of a lot of other sad looking people. Instead, I had a little memorial service at my house that she would have loved, with just very close friends, and we all told stories about her and all that.

In any event, with regard to work. So I told Larry, I said, “Well, I'm going to come to work. I'm going to direct this episode,” which wound up being my final episode of the series, because this last season, season 12 was the final season. He said, “Okay, if you're ready,” and I did, and the timing was right, because I had enough time on my own. I had this trip to Santa Barbara. I got to really reflect and meditate on all this, and now I was ready to deal with people again. And when you're directing a movie or an episode of television, you are thrown into the deep end of dealing with people and sort of the social element of that kind of work, and people coming at you with questions, and you have to be clear headed. So the timing actually worked out right, and I was able to go back to work, which was fine. And now I'm working on a documentary, but working out of my house and sort of taking my time with it.

I'm very, very thankful that I don't have a conventional, a traditional job where I'm at a desk in an office or in a cubicle with a lot of other people, because, as I say, my emotions will take over and I will start to cry, and it's great to be in my own house and to be able to do that and even sob, and not worry about what the person in the next cubicle is thinking. So I do have empathy or sympathy for people who really have to go back to sort of like a real job, you know, like, say, an office job, when they're still dealing with their grief. I think that's hard, but again, I've been very lucky that way. And, you know, here we are.

I used to say that when Linda went I didn't know what my reason would be to throw the covers off in the morning. And there are three reasons: It’s the cat jumping in my face because he wants to be fed, the dog has to be walked, and I have to pee. So those are three reasons to get out of bed in the morning. And then once you're up, you think, “Well, right now, I may as well go check email and make breakfast and all that.” And next thing you know, you're on your feet. It's important to stay on your feet.

Oscar: Yeah, you’re always going to have to pee.

Bob: What is it? Death, taxes and having to pee — three things you just can't escape.