In the spring of 2018, an unexpected Facebook-friend request landed in my notifications. It was from someone claiming to be my father, but there was something off about it. The profile featured my dad’s photos, but the name was misspelled. Not thinking much of it, I reported the account and moved on with my life.
Little did I know, less than a month later, my dad received a devastating diagnosis of dementia. Initially, my sister and I were preoccupied with his tendency to wander off or try to escape due to anxiety or confusion. We were completely unaware of his social media activities. However, we soon discovered his actual Facebook profile, which he had been using for quite some time. Although his name was spelled correctly, he had been sending strange messages, initiating random group chats, and mindlessly sharing the same content repeatedly. It became evident that the fake profile was, in fact, his own creation, a result of his cognitive decline. And this was just the beginning of his online journey.
It struck us that my father’s deteriorating mental state was witnessed by nearly everyone we knew, many of whom were unaware of his condition. We pondered whether his friends were confused or concerned, but more importantly, we questioned whether the father we knew before dementia would want to present himself this way on social media. We concluded that he wouldn’t. However, the version of him standing before us longed for connection and was inexplicably drawn to the world of social media. We soon realized that concealing his reality was unnecessary.
Before his dementia diagnosis, my dad wasn’t particularly fond of Facebook. I vividly remember him commenting on one of my posts and expressing his belief that it was a waste of time. However, over time, he reconnected with old high school friends from Beirut, scattering across different parts of the world. This newfound ability to interact with them rekindled his interest in the platform.
Then, in 2018, he started forgetting things. Simple questions like “Where are you two going?” became routine inquiries, even minutes after receiving an answer. The last six months of his life were plagued with restlessness and fear of being alone. If I mentioned going for a short walk, he would panic and call me within minutes. One night, after a long day of caring for both him and my terminally ill mother, I yearned for a few hours of sleep. However, he asked me to sleep on the sofa in his room. He kept the lights and TV on throughout the night, constantly adjusting his power recliner. He had always been independent, but now he couldn’t sit still or face the night without constant companionship.
This sense of restlessness is familiar among dementia patients. They often feel the need to “go home” even when they are already home, which explains their tendency to wander. Loneliness is another common struggle, even for those not isolated in care facilities. The arrival of the pandemic, occurring roughly two years after my father’s diagnosis, only exacerbated these challenges. Studies indicate that social distancing measures significantly affected individuals with dementia.
My father’s social media usage reflected his perpetual state of agitation. He endlessly messaged me on Facebook, often sharing chain-message-type warnings repeatedly, such as the story of women dying from inhaling a free perfume sample. However, his frantic posts seemed to bring him a sense of solace in real life. It provided an outlet for his nervous energy and made him feel connected to others.
Despite my concerns about his public online behavior, people didn’t react with confusion or annoyance. Instead, they recognized that something was wrong. Rather than ignoring his posts, they displayed genuine concern and love. A month before his passing, he accidentally video-called me through Facebook, something he had never done before. Even though it was a mistake, I expressed gratitude for the call. Surprisingly, he had unknowingly added six other people to the call. A friend from North Carolina joined in and shared how much my dad meant to him. Another friend driving through the mountains of Lebanon expressed his love and referred to my dad as a father figure. These interactions would not have occurred if not for my father’s unintentional actions.
On another occasion, I discovered that my dad had created a large group message. Given his innate leadership qualities and outspoken nature, approximately 50 individuals, most of whom were unaware of his dementia, eagerly awaited his message. Hours passed without a word from my dad, but one member of the group sent a wave, and others followed suit. What unfolded was a group of people, unknown to each other, simply saying hello and waving to one another. I often reflect on that interactive chat, which still exists, though largely inactive. It represents an entire network of friends forever bonded through a simple wave.
Dementia patients are frequently hidden away, whether in distant facilities or concealed subtly by individuals like myself who feel uncomfortable exposing the thoughts and behaviors of our loved ones. Though well-intentioned, this protective instinct often stems from fear of potential judgment. We may also want to preserve the image others have of our loved ones before dementia took hold. Observing my father’s friends’ reactions to his online activities, I realized I should have had more faith in their care for him. Their genuine concern persisted, even when he no longer seemed like his former self.
In addition to showcasing the profound changes in my father’s mental state, his social media presence offered glimpses of the person he used to be. His final Facebook status before entering the hospital for the last time simply read, “Bravo air fryer,” followed by a phone number. He had seen a TV advertisement for the product and mistakenly posted the number instead of writing it down. Although he had once cherished cooking and even owned a restaurant, he hadn’t been able to do so for over a year. As I helped him put on his shirt and shoes, he asked, “What am I still living for?” His ability to walk had deteriorated, and he experienced exhaustion after a few steps with his walker.
He had lost so much, but his presence on social media served as a reminder of the part of him that still remained.
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