20/04/2025
Dementia should be seen. Sufferers supported.
“My father’s cognitive decline had an audience of almost everyone we knew, many of whom didn’t know about his diagnosis,” Angie Mazakis wrote in 2023. But the more he reached out to people—purposefully or not—the more she and her sister realized that his reality didn’t need to be concealed: https://theatln.tc/xv1wOr2g
In the last six months of his life, dementia made Mazakis’s father deeply anxious and afraid to be alone. “My father’s social-media use reflected his constant state of agitation. He’d ping me endlessly on Facebook … 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,” she writes. “It would have taken too much effort to 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, they were mostly just concerned, and loving, and glad to still be connected to him. Once, about a month before her dad died, he video-called Mazakis through Facebook—something he had never done before. “‘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.’”
“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 … 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.”
🎨: Jon Han for The Atlantic