Call our 24 hours, seven days a week helpline at 800.272.3900

24/7 Helpline 800.272.3900

TV Show "Castle Rock" Makes Alzheimer's the Focus of Episode

TV Show "Castle Rock" Makes Alzheimer's the Focus of Episode
Share or Print this page
Share or Print this page
January 24, 2019
Share or Print this page

Sam Shaw, co-creator of Hulu’s television show “Castle Rock” – based on a famed fictional location in Stephen King’s writing – has been crafting stories for TV for more than a decade. Shaw’s most personal piece of writing is an episode of the show that focuses on dementia, a disease his family knows too well: “We wanted to tell a different kind of Alzheimer’s story, exploring the experience of dementia from the inside out. And to paint a picture of a woman whose life is full of contradictions — beauty and connection and love, as well as loss.”

How would you describe the show “Castle Rock”?
Castle Rock is a psychological horror-drama TV show set in the universe of Stephen King’s stories and novels. My co-creator Dusty Thomason and I both loved King as kids — stole paperbacks of “Pet Sematary” and “Night Shift” off our parents’ bookshelves when we were much too young and impressionable. Those were some of the books that made us want to be writers in the first place. 
Decades later, we thought it would be interesting to revisit and reinterpret those stories for television. But instead of adapting a single book, we got excited about the idea of adapting King more broadly, as a genre. Stephen King has spent the last half-century inventing his own mode of storytelling, with its own tropes and themes and structures. Our aim was to tell original stories in the key of King, brushing up against some of the beloved, iconic landmarks and characters. So, naturally, we set the series in the fictional town of Castle Rock, Maine, which figures in something like 37 of Stephen King’s stories and novels.
One episode titled “The Queen” became a special labor of love for you. Can you share a spoiler-free account about why the focus on dementia in this episode was so personal?
There’s a mystery at the heart of the first season, involving some unsettling events from the childhood of the protagonist, Henry Deaver (Andre Holland), leading up to the death of his adoptive father. Henry can’t remember what happened; in a way, that black box or negative space has defined the trajectory of his life.

Dusty and I realized early on that Henry’s relationship with his adoptive mother, Ruth (Sissy Spacek), would be centrally important. And because a bunch of aspects of the story seemed to hinge on questions of memory and forgetting and identity and nostalgia and the push-pull between the past and the present, we decided it would be interesting if Ruth was grappling with early-onset Alzheimer’s. It was a subject I was thinking about outside of work, for personal reasons: all four of my grandparents battled one form of dementia or another at the end of their lives, and my mother was dealing with it at a much younger age. There was probably something cathartic in roping dementia into our story.

One of the first story pitches we all fell in love with was the idea of devoting a full episode to Ruth, told entirely from her point-of-view, bringing her experience of Alzheimer’s to the screen. To a certain extent, the series would invite the audience to underestimate Ruth, to write her off as a character, seeing only her disease; then we’d show the world through Ruth’s eyes, opening an emotional trapdoor on the story and recontextualizing the previous episodes. We all liked the idea that Ruth’s memories could serve as the unexpected skeleton key that unlocks the season. 

Then a week or so after we’d opened our writers’ room, my mom died unexpectedly. She was one of the great human beings in my life, someone I loved and admired as much as I’ll ever love and admire anyone. It was like getting hit by a meteor.
For better or worse, you don’t have a lot of time for reflection when you’re making a TV show. As Ruth says in episode 7, life moves in one direction, “forward, like one of those people movers at the airport.” So grief took a backseat, at least temporarily. But my relationship to the Ruth episode shifted. It began to feel more important, and the prospect of writing it felt scarier.
What was it like plotting the episode and all its intricacies?
Typically, in a TV writers' room, you hash out the basics of every episode as a group. “The Queen” worked a little differently. We had a notecard on the writers’ room wall that said “Ruth Alzheimer’s episode.” We pinned it up the first week and then it kept migrating around the room, moving deeper into the season — mostly for story reasons, but also because it was intimidating, to me at least. Finally, once it was time to tackle the Ruth episode, one of our writers, Tom Spezialy, squinted at the bulletin board and said, “Yeah, I think you should figure this one out on your own.” Partly because the specific challenges of the episode were better suited to a solo mission, but also, I think, because he knew that the material was personal for me. Tom was sort of our elder statesman and guru in the writers’ room, and he’s usually right, so the room moved on to the next episode and I flew to Montana and holed up at my in-laws’ house to break and write the episode on my own.
Some of the parameters were defined, but it was mostly uncharted territory. Which was terrifying. Structurally, the episode kept threatening to spin off into chaos. Early on, we all got attached to the idea that Ruth’s experience of dementia might look something like time travel. So instead of a process of subtraction, Alzheimer’s sort of bombards her with memories — turns her house into a literal memory palace, where she can walk out of a room in 2018 and find herself in a hallway full of wedding guests, decades earlier, in 1974, like Billy Pilgrim in "Slaughterhouse Five", unstuck in time. We knew some viewers would find the experience confusing, even frustrating. That was OK. In fact, it was important: the point of the episode was to throw the audience in to the deep end of Ruth’s subjectivity, to ask them to empathize with a new and uncomfortable point of view. 
But the story required rules, form. And it couldn’t feel like homework or a puzzle. In the end, the solve came out of character. I realized that Ruth would have adapted her own rules, as a matter of necessity, to help her navigate her disease. I thought about the coping mechanisms my mom adapted, the mementos that became increasingly important to her over time. And I remembered the experience of going through her personal effects with my sister after she died, how the knickknacks and objects she’d loved felt almost magical, charged with her memory. That led to the big breakthrough of the episode — the idea that Ruth might use chess pieces scattered around her house, like breadcrumbs or talismans, to help her distinguish between memory and reality. And that the chess set might have been a gift from Alan Pangborn (Scott Glenn), a character who has held a candle for Ruth for decades. That single discovery made the script writable. And it transformed the episode into a love story. 
There was still plenty of story math and structural problem-solving, but the process of working on it was never cerebral, it was emotional. And personal. I’d spent a year avoiding a lot of profoundly difficult feelings, tamping them down, and then for three weeks I sat in a room and looked at the world through the eyes of a woman with early-onset Alzheimer’s. It sounds crazy when I say it out loud — that an episode of a J.J. Abrams-produced Stephen-King-inspired psychological horror TV show became a Zen-like emotional pilgrimage that helped me grieve my mom’s death. But it’s true. When the script was finished I didn’t know if it would work for an audience, but on a deeper level, I knew it had worked for me.
Since the episode aired, you’ve had people reach out to you about their own experiences with Alzheimer’s and dementia. What has that response been like?
Really, really moving. I’ve written a lot of episodes of TV that I loved. You try to love them all! But the experience of writing and producing this one was so mixed up with the loss of my mom and the ups and downs of a really hard year ... it just felt different. The fact that viewers connected with the episode, particularly people who have dealt with Alzheimer’s in their own lives — that’s meant a huge amount. A lot of strangers have written to say that the episode reminded them of a lost parent or grandparent, or shifted their thinking about a loved one who’s coping with dementia. Hard to imagine I’ll ever have an experience in this business that means more than that.
And the thing is, the episode absolutely could have been a train wreck. The script was very ambitious, from a production standpoint. Structurally, it’s the most complicated thing I’ve ever written. It could have felt flashy or intellectual, which would have been death. The fact that it worked is a tribute to Greg Yaitanes, who directed the episode, and found a way to make it grounded and heartbreaking and beautiful, and Sissy Spacek, who gives one of the greatest onscreen performances I’ve ever seen. The shooting schedule was punishing — the episode is told entirely from Ruth’s point of view, so she’s in every scene — and she was completely emotionally present in every take. And the part was insanely demanding — physically, motionally, psychically. Early on, we’d hit on an unusual approach to the episode’s backstory scenes. Instead of casting a younger actor to play Ruth in the 1980s and ‘90s we wanted Sissy to play Ruth throughout, with no de-aging makeup or visual effects. Partly it was a function of having cast one of our greatest living actors: if you’ve got Babe Ruth, you don’t want him riding the bench. But there was an emotional, cinematic logic, too. When Ruth looks up from a newspaper at her kitchen table in 2018 and finds herself in church listening to her dead husband deliver a sermon in 1990, we’re not watching a flashback, we’re inhabiting a memory. So it felt right and exciting to us to that Sissy would serve as our avatar and guide on this complicated journey through the ups and downs and loves and regrets of Ruth’s life. She’s our emotional through line. But that meant that she had to play Ruth at ages 30, 40 and 68, all in the same hour, sometimes within the same scene. Just an incredible feat.
How did Sissy prepare for playing a woman with dementia?
Dusty and I were so lucky to get to write for this cast. To an actor, they’re all extraordinary. Early on, when we were talking about Ruth’s arc, we’d throw Sissy’s name around as a kind of shorthand: “We should cast a Sissy Spacek type!” As if there’s such a thing as a Sissy Spacek type. There’s not, there’s just Sissy Spacek. She’s an American icon, one of our most brilliant actors, so when we offered her the role, it felt a little like buying a Powerball ticket. And then we won! It was a homecoming, in a way: her return to the world of Stephen King, forty years after Carrie. But what appealed to her, I think, was the chance to do something new, to play aspects of dementia we don’t see onscreen very often. I can’t speak for Sissy or her process, but we spent a lot of time talking about Alzheimer’s and how it manifests, discussing people we've known and loved who have dealt with dementia, trading book and movie recommendations. One thing that was very important to her was that we not turn Ruth’s story into a dirge. There are some traps when dementia is represented onscreen. It’s easy to focus on loss and diminishment and tragedy — for good reason. But we really wanted to make room for light and love and connection too. In a way, Ruth’s relationship with Alan became the beating heart of the season. Most of the love stories you see on TV are about characters in their 20s or 30s, or occasionally their 40s; every once in a while a fifty-something couple slips past the snipers. It was really beautiful to be able to explore a relationship you don’t see very often, one with its own unique challenges, where every moment of clarity and presence is a gift.

In terms of our reference points, I’d been reading a really beautiful memoir called "Memory’s Last Breath" by Gerda Saunders, a retired professor (like Ruth), which I passed on to Sissy. It gets inside the experience of dementia in a way that really moved and haunted me — and it’s bursting with intelligence and poetry and wit. And Sissy pointed me to a documentary she loved, called “Confessions of a Dutiful Daughter,” which became really important to us. She was really struck by how full of life the woman at the center of the film is — how much spontaneity and lightness you see, intertwined with the heavier moments of dementia. So that was a North Star for us, the idea that Ruth’s story had to include connection and joy and laughter as well as darkness.

Set dressing and wardrobe were very important to Sissy, too. What do the objects in Ruth’s house say about her life? Are there particular totems she’s held on to, because they remind her of her past, help her maintain her hold on the present, help constitute her identity? We talked a lot about the importance of home, particularly to a person with dementia — the ways a house can become a repository of memories, your terra firma, even if some of those memories are traumatic, as some of Ruth’s are. And then Sissy took the role and completely made it her own. She’s really and truly the creator of the character.
That was the gift of this episode, for me. It started as a really personal, insular experience, and then these extraordinary artists took ownership of it and made it their own in ways that transcended any hope I could have had for it. Sissy and Greg Yaitanes. Our DP, Jeff Greeley. Our incredible editor, Trevor Baker. Our composer, Chris Westlake. “The Queen” became a real labor of love for a lot of people.

Since the posting of this blog, "Castle Rock" won the Writer's Guild of America award in the "Best Long Form Original" category. 
About Sam: Born in Brooklyn and currently residing in Los Angeles, writer and producer Sam Shaw is co-creator of the Hulu television series "Castle Rock." Sam's previous television credits include the critically-acclaimed atomic bomb drama "Manhattan," which he created, wrote and executive produced, and Showtime's series about the sex researchers Masters & Johnson, "Masters of Sex," among others.


Showing {{currentNumberOfComments}} of {{totalNumberOfComments}} Comments
Post a new comment

Keep Up With Alzheimer’s News and Events

The first survivor of Alzheimer's is out there, but we won't get there without you.

Donate Now

Learn how Alzheimer’s disease affects the brain.

Take the Brain Tour

Don't just hope for a cure. Help us find one.

Learn More