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Dementia

My Dad Had Dementia. He Also Had Facebook.

The Atlantic

www.theatlantic.com › family › archive › 2023 › 06 › dementia-social-media-use › 674563

In the spring of 2018, I received a Facebook-friend request from an imposter—someone pretending to be my father. At least, that’s what I thought. The profile used my dad’s photos, but his name was spelled incorrectly. I reported it and went on with my life.

Less than a month later, my dad was diagnosed with dementia. At first, my sister and I didn’t think much about his social-media use; we were busy worrying about his new tendency to elope—the term for when dementia patients wander away from their confines or, driven by anxiety or confusion, attempt to escape. (Once, he stole back the car keys we had hidden to keep him from driving off; twice, he simply bought a new car.) But then we noticed his Facebook profile. Though it was the one he’d long been using, with his name spelled correctly, he’d been sending odd messages, starting seemingly random group chats, and sharing the same thing over and over. One day, he posted three different memes three times each and three others six times each, all within the same hour. We realized the fake profile had, in fact, been very real—it was an additional account my father had made by mistake. It had only been the start.

My father’s cognitive decline had an audience of almost everyone we knew, many of whom didn’t know about his diagnosis. Were his friends confused or worried? we wondered. More important: Would the clear-minded version of him who existed before his dementia want to appear this way online? We didn’t think so. Yet the one who existed right in front of us wanted connection, and he seemed to be pulled to social media. And the more he reached out to people—however strangely, purposefully or not—the more we realized that his reality didn’t need to be concealed.

[Read: How people with dementia make sense of the world]

When my dad joined Facebook, almost a decade before his dementia diagnosis, he wasn’t impressed with the platform. I remember him commenting on a status I had posted, to my embarrassment: “Facebook seems like a huge waste of time.” Eventually, though, he discovered friends with whom he’d gone to high school in Beirut. He hadn’t connected with them in years, and they were scattered across the world—but now he could interact with them.

Then, in 2018, he began forgetting things. “Where are you two going?” he asked one day as I grabbed my mother’s purse from the living room. “Mom has a doctor’s appointment,” I said. A few minutes later, when I rolled her wheelchair into the living room to go pull up the car, he looked at us, surprised. “Where are you two going?”  

In the last six months of his life, dementia made my father deeply anxious and afraid to be alone. If I told him I was going for a 20-minute walk, he’d panic and call me five minutes later. One evening, after I’d spent the whole day caring for him and my mom, who was also terminally ill, I was desperate to pass out in my bed for just a few hours—but he wanted me to sleep on the sofa in his room. All night, he kept the lights and the TV on, pressing buttons to move his power recliner every five minutes. He’d always been the most independent person I knew, but now he couldn’t sit still or pass the night without company.

That sense of restlessness is common for people with dementia. They often have the feeling of wanting to go home even when they are home, which is one reason they might elope. And the feeling of loneliness, too, is not unusual; even those who aren’t physically isolated in care facilities probably struggle to keep up with friends. The pandemic, which began roughly two years after my dad’s diagnosis, didn’t help. Studies suggest that social-distancing restrictions took a major toll on many people with dementia.

[Read: What if this was the last year your loved one was lucid?]

My father’s social-media use reflected his constant state of agitation. He’d ping me endlessly on Facebook—often sending repeated chain-message-type warnings, like one cautioning that women had died after inhaling a free perfume sample they’d received in the mail. But his frenetic posting also seemed to soothe him in real life; it gave him an outlet for his nervous energy, and a sense of being linked to other people.

Still, I felt anxious about his more public online activity. Some people reacted with bewilderment; on one post, a friend from Beirut wrote, “Too confusing. Incomplete sentences.” It would have taken too much effort to privately and tactfully alert every one of his friends of his situation. So we just let him continue to use social media, assuming that people would eventually ignore his posts.

But that’s not what happened. Instead, people seemed to recognize that he wasn’t well. And instead of disappearing, they were mostly just concerned, and loving, and glad to still be connected to him. Once, about a month before my dad died, he video-called me through Facebook—something he had never done before, so I could tell it was a mistake. “I know you didn’t mean to, but I’m glad you called,” I said. “Did you know you added six other people to this call?” He didn’t. “Well,” I told him, “we might have some visitors joining.”

One friend joined from North Carolina and talked with him for a few minutes. Before he hung up, he shared how much my dad meant to him. Then a friend who was driving through the mountains of Lebanon joined. “I love this man. I love your dad,” he said. “He’s like a father to me.” My dad still had faint bruises on his face from a fall on concrete a few weeks earlier, after which he’d had to get staples in his head. “It’s good to see that you’re doing better,” his friend said. He never would have seen this had my father not accidentally called.

[Read: How dementia locks people inside their pain]

Another time, I found that my dad had created a large group message. Because he was a natural-born leader—president of every group he’d ever joined—and categorically outspoken, the 50 or so people added, most of whom did not know he had dementia, were waiting to see what he had to say. The chat consisted of his friends in Beirut, friends living in other Middle Eastern or European countries, and friends across the United States—from Georgia, Michigan, Tennessee. I was anxious about what he might send.

But after several hours with no word from my dad, someone in the group sent a wave. Other members, not knowing one another, followed suit. Eventually, if I scrolled down, there were tens of people in this newly formed group, just quietly saying hello. I think often about that chat, which still exists, however inactive—a whole network of friends, waving forever.

Dementia patients are so often hidden, whether in facilities away from their communities or more subtly—by people like me, keeping private the thoughts and behaviors of our loved ones that make us uncomfortable. That impulse, I believe, is often well intentioned; we just don’t know what people will think. Perhaps we also don’t want to tarnish the image of our loved one that members of their circle once had. But watching my dad’s friends react to his online activity, I realized I should have had a little more faith in their care for him, and the persistence of that care even when he didn’t seem like himself anymore.

And while my dad’s social-media use revealed how profoundly he had changed, it also gave me glimpses of my old father, still there, somewhere within him. The last Facebook status he wrote before entering the hospital for the very last time read “Bravo air fryer” with a 1-800 number. He’d seen the product advertised on TV, and posted the number when he meant to just write it down. Though he’d once loved to cook—he’d even briefly owned and run a restaurant—he hadn’t been able to in at least a year. “What am I still living for?” he’d recently asked as I was putting his shirt and shoes on him; he could only walk a few steps with his walker before feeling exhausted.

He’d lost so much of what gave him a sense of identity. And yet, that post made me realize that he hadn’t lost all of it. My dad was still my dad. He wanted to air-fry something.

The Perfect Escapist Sci-Fi Series

The Atlantic

www.theatlantic.com › newsletters › archive › 2023 › 06 › the-perfect-escapist-sci-fi-series › 674289

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This is an edition of The Atlantic Daily, a newsletter that guides you through the biggest stories of the day, helps you discover new ideas, and recommends the best in culture. Sign up for it here.

Good morning, and welcome back to The Daily’s Sunday culture edition, in which one Atlantic writer reveals what’s keeping them entertained.

Today’s special guest is Emma Sarappo, an associate editor on The Atlantic’s Books team. Emma is also a frequent contributor to our Books Briefing newsletter, having recently written about books for a changing planet and making sense of the divide between technology and humanity. Right now Emma is looking forward to a once-in-a-lifetime cross-country concert trip, scratching her brain with the Two Dots smartphone puzzle game, and gearing up for the 60th-anniversary special of Doctor Who.

First, here are three Sunday reads from The Atlantic:

The Succession plot point that explained the whole series Fans’ expectations of Taylor Swift are chafing against reality. The blue-strawberry problem The Culture Survey: Emma Sarappo

The upcoming event I’m most looking forward to: I’m going to see Joni Mitchell, plus Brandi Carlile, play in Washington State next weekend. It’s a bit of a wild trip—I’m heading all the way to the West Coast from Washington, D.C., and only staying for three days—but my best friend and I figured this might be a once-in-our-lifetime opportunity, so we agreed we had to do it. [Related: The unknowable Joni Mitchell (from 2017)]

Something delightful introduced to me by a kid in my life: Last year, my teenage cousin got me to watch Heartstopper, Netflix’s adaptation of the webcomic and graphic-novel series by Alice Oseman, which is so delightful and fun. My cousin is Norwegian but apparently adores the books so much that she buys and reads them in English in order to get them sooner. [Related: Heartstopper and the era of feel-good, queer-teen romances]

Something I loved as a teenager and still love: Sometimes I feel like I carry my teenage self around in my front pocket; her tastes are still so influential to me today. She loved Doctor Who, and she was right—it’s still perfect sci-fi escapism—and we are so excited for the forthcoming Doctor Who special that’ll bring back the actors David Tennant and Catherine Tate, plus Yasmin Finney (whom I loved in Heartstopper)! Then we’re due for a series with Ncuti Gatwa (whom I loved in Sex Education). [Related: How Doctor Who survived 50 years (from 2013)]

The last museum or gallery show that I loved: I was at the Philadelphia Museum of Art the other week and made a point of spending time in the room that holds Cy Twombly’s Fifty Days at Iliam, a series of 10 paintings that evoke the Iliad and the Trojan War through gesture, color, and writing. They inspire really strong responses, because they’re so large and so surprising—at first glance, they appear scribbled or imprecise. If you stay long enough, you’ll hear some gasps, or laughs. I loved that experience.

A painting, sculpture, or other piece of visual art that I cherish: So many, but one of the first that genuinely changed my life as a young adult is Félix González-Torres’s “Untitled” (Portrait of Ross in L.A.), on view at the Art Institute of Chicago. I hear that teenagers are talking a lot about it on TikTok, which is sweet. When I was younger, we were all reblogging González-Torres’s work “Untitled” (Perfect Lovers) on Tumblr.

Something I recently rewatched, reread, or otherwise revisited: I started listening to the Smiths again after their bassist, Andy Rourke, died last month. They’re another formative teenage band for me—two generations deep, because I got the CDs from my dad, who also found them formative in his youth. Today, lead singer Morrissey’s racist rhetoric casts a pall over the band for me, but listening to the music, I understand entirely why I was so obsessed with it long before I’d ever read anything about the band. Rourke was a huge part of that. This video of the guitarist Johnny Marr inviting a kid onstage, basically daring him to play “This Charming Man,” a crucial Rourke song—and the kid suddenly, improbably, nailing the riff—is one of my favorite things on the internet.

A piece of journalism that recently changed my perspective on a topic: Katie Engelhart’s “The Mother Who Changed: A Story of Dementia” from The New York Times Magazine last month. There are no easy answers here, so it didn’t have me reverse any of my positions, but it opened my eyes to questions about autonomy and aging that I’d never considered.

A favorite story I’ve read in The Atlantic: Painful to pick just a few. Patricia Lockwood on To the Lighthouse was tailor-made for me. I just sent someone Dara Mathis’s story on the Black-liberation movement she grew up in. I read William Langewiesche’s story on Flight MH370 exactly once and haven’t stopped thinking about it, but I will never read it again (too frightening).

My favorite way of wasting time on my phone: Two Dots. It frees me from the social web and scratches my brain perfectly.

An online creator that I’m a fan of: My TikTok is basically all cooking and jokes, which is ideal. I especially love videos from Bettina Makalintal (@bettinamak) and Chuck Cruz (@chuckischarles).

The last debate I had about culture: Less a debate than a round of cooperative overlapping about why Taylor Swift refuses to make her best songs the singles from her albums (justice for “Cruel Summer”).

A good recommendation I recently received: I finally gave in to my best friend’s multiyear urging that I watch The Americans, and, after finishing the series, I must demand that you all watch The Americans. [Related: The Americans is the realest, scariest spy show on TV. (From 2014)]

A poem, or line of poetry, that I return to: I just saw my sister graduate from college with an engineering degree; she was telling me about a humanities class on German culture and literature that she had to take. Her class had read this poem about some old statue, she said, and the abrupt turn at the end knocked them all out—they laughed, and they made memes, because the suddenness of the speaker’s realization felt so dramatic. She couldn’t remember it verbatim, so I finished the line automatically: “You must change your life,” from Rainer Maria Rilke’s “Archaic Torso of Apollo.” I know I’m old now, because that kind of lightning-flash epiphany inspired by art was so strange to a class of undergraduates, but so familiar—and so moving—to me. [Related: ‘To work is to live without dying.’ (From 1996)]

Read past editions of the Culture Survey with Adam Harris, Saahil Desai, Yasmin Tayag, Damon Beres, Julie Beck, Faith Hill, and Derek Thompson.

The Week Ahead The Idol, the buzzy (and contentious) new series from the Euphoria creator Sam Levinson, Abel “The Weeknd” Tesfaye, and Reza Fahim, starring Tesfaye and Lily-Rose Depp (premieres on HBO and Max tonight at 9 p.m. ET) Countries of Origin, the debut novel by Javier Fuentes, which tells the story of a blossoming romance between two young men from very different worlds (on sale Tuesday) Transformers: Rise of the Beasts, a reboot of the live-action film franchise based on the popular Hasbro toys and animated series, starring the In the Heights actor Anthony Ramos (in theaters Friday) Essay Illustration by The Atlantic. Sources: Matt Squire / Lookout Point / AMC.

The Most Compelling Female Character on Television

By Sophie Gilbert

The last time we saw Happy Valley’s Catherine Cawood, she was trying—and quite magnificently failing—to capture one of her police-force colleagues, the nebbishy John Wadsworth, who’d finally been implicated in the murder of his lover. The pursuit is a bleak comedy of errors: Directed by her superiors not to pursue John down train tracks, Catherine mutters “bollocks” and follows him anyway. The pair end up on a bridge in relentless rain. Catherine, who says that she’s never trained in negotiation, asks John—who’s successfully talked down 17 people from various ledges—what to say to compel him not to jump. She has to keep him talking, John says. “You’ve got to be assertive. Reassuring. Empathetic and kind. And you’ve got to listen.” Catherine tells John to take his time, that she’ll be there. His face discernibly changes. “I love my kids,” he tells her; he propels himself backward.

Read the full article.

More in Culture The filmmaker who knows what’s wrong with your relationships The indignity of grocery shopping Usher knows what it means to burn. Cynthia Ozick on the link between beauty and purity Short story: “Late-Night-Radio Talk-Show Host Tells All” Barry finally gave up its delusions. Seven tips from Susan Sontag for independent thinking The trees don’t care about us. The key to America’s victory in the Second World War Catch Up on The Atlantic The aspects of manifestation we shouldn’t discount Lordy, there are tapes. Semi-retirees know the key to work-life balance. Photo Album Hugo Hu / Getty

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