I have 374 photos and videos of my mother stored on my iPhone. These likenesses capture her in the earliest days of her dementia while my father was still alive, through multiple care home moves, and finally the last days before my mother’s death, where she napped in the warmth of the sun while seated in a hospice wheelchair.
They are a balm for me. I look back with fondness in capturing her in happy times, in sad ones, and in those when she was vulnerable or angry. I’ve shared the pictures with my kids, siblings, and on social media and blogs. But I wonder, did I ever cross the line in sharing too much? Where did the responsibility lie in respecting her privacy and her wishes, when she was a person who couldn’t say “no” in her dementia.
Who decides when the virtual sharing of posts or images is too much?
Are We Oversharing as Caregivers?
We live out our lives through social media. The connected world brings us closer together and highlights our isolation. With social media comes conflict and risks. We are all guilty of asking, “Let me see the picture before you post it.” We fear letting the world see too many of our imperfections. We want the world to see us as we see ourselves. But what happens when someone else makes that decision?
When writing both my parents’ obituaries, there was concern amongst siblings over which photo would accurately portray the person we loved. Does one publish a photo of the best representation of that person or publish one that is present-day? In both instances, we chose photos which offered a glimmer of who that person was before a diagnosis of Parkinson’s or Alzheimer’s.
Caregivers are tasked with overwhelming duties, not the least of which is to protect loved ones when they’re unable to speak or act for themselves. This extends to how they are portrayed to the world outside the comfort of their house or care home. We have financial and medical power of attorneys to ensure our loved one’s wishes are being met. While POAs cover many legal actions, we do not have social media power of attorneys to keep harmful videos of us off TikTok or YouTube. There are precautions for us to assign an executor for digital assets when we die, but who will protect us in the virtual world while we’re still here? We don’t have these protections for the living. For that, we need insightful caregivers.
When struggling with their duties, caregivers often turn to digital communities as way of creating bonds. In those forums, plenty of compassion, warmth, and wisdom is shared. But what if a relative or friend of the loved one does not agree with this sharing? What if what you reveal is inappropriate? Who decides?
The Institute on Aging offers tips to ensure respect for the boundaries you’ve agreed to as caregiver. They suggest joining private forums, which don’t allow for widespread sharing of content, involvement in caregiving groups in person to eliminate the prospect of wanting to post online, and finally, composing your thoughts or posts on paper in a private journal. Separate yourself from your words or images, evaluate them thoroughly, and decide if it’s appropriate content or the best use of language before sharing.
Despite our best intentions, any post on social media can be twisted around. To be the best advocate for our loved ones, it’s important we keep not only their medical information safe, but their social information too. My mother used to call these personal revelations, “airing out our dirty laundry.” The use of social media would be abhorrent to her today.
A recent MIT review, Dementia content gets billions of views on TikTok, examined the use of viral videos which portray the many facets caregiving. One daughter, Jacquelyn Revere, first began her series of videos in concert with her mother “when she’s fresh out of the shower and her hair is done and she feels like ‘Ooh, I’m that girl.’” She now prefers to address more difficult aspects off screen. With her mother advancing to a more critical stage of dementia, she’s moved to creating more educational content.
For the younger generation who has grown up with social media and documented every aspect of their life, it’s difficult to imagine not sharing everything, and therefore, to not cross an imaginary line. For the older generations, who are unaccustomed to social media’s backlash, they make unintentional mistakes and post social media content in ways more harmful than they envisioned.
According to dementia expert, Teepa Snow, some of the earliest viral videos she recalled seeing “about those living with dementia leaned into those stereotypes (about a combatant mother or an infantilized father) and were created to argue that the person being filmed should not live independently. These harmful videos have migrated over time from the pre-social internet to Facebook, YouTube, and now TikTok.”
Another woman in the MIT review, Kate Swaffer, was diagnosed with younger-onset semantic dementia at age 49. She takes exceptions to videos on TikTok that portray those with dementia as helpless or feeding into society’s expectations of them, including the language used. “There’s been a long discussion about language, respectful language on our terms. People without dementia regularly say that we are suffering or, you know, sufferers of dementia,” she says. “I’ve been bullied off of social media twice now by carers’ groups for daring to say, ‘Please don’t call us sufferers.’” We should steer away from reducing their experiences to a social media GIF or soundbite.
Though they vary in form and technology, social media platforms are here to stay. We need to remember we are advocates for our loved ones in medicine, finance, the law, and in other real-world scenarios. We must be their advocates in the virtual world too.
Annette Januzzi Wick is a writer, speaker, and author of I’ll Have Some of Yours, a journey of cookies and caregiving (Three Arch Press) and is a recipient of a 2020 NSNC award. A frequent contributor to Cincinnati.com, her work has appeared in Grief Becomes You, Before the Diagnosis, Cincinnati Magazine, nextavenue.com, Shanti Arts, 3rd Act Magazine, and others. Visit annettejwick.com to learn more.