Patti LaFleur, Washington, USA
Showing Our Love Loud and Clear
My mom and I had a lot of love to share. We never intentionally set out to share our story, but since the first day of posting my mom on my personal Instagram page I have found a community that has become like family to me even after my mom’s passing. Now that I am several months past her passing and still sharing our story, social media has become the avenue for me to attempt to change the stigma around dementia, support caregivers, and advocate for change.
I never intended to share our story on social media, but when my mom moved in with me in 2019, she became a huge part of my daily life and so I shared pictures/videos of what we were doing. Our daily dance party videos reached an audience of caregivers I didn’t know I needed. I began to find people that were my age and were also navigating this difficult journey. This changed the trajectory of my journey because it allowed me to learn from others, feel seen and provided me with a virtual support system that quickly went from Instagram friends to real friends.
As I gained momentum in sharing our story, I began to share our story across various platforms (Instagram, TikTok, Twitter, and Facebook). This became visual storytelling. I was telling the same story that was traditionally written about in books, but I was doing so by sharing videos of my mom and I. I was sharing our laughter, dance parties, art activities, and the hard times. I was sharing our love, while also trying to share the challenges that come along with it.
One of my videos about self-regulation recently went “viral”. It was a post about a breathing technique I used with my mom and it has over 2 million views on Instagram. As a content creator, you would think that viral videos would be the goal. But viral videos often have more negative than positive. They go beyond the intended audience and reach an audience of people that are not caregivers or people not as impacted by dementia. These people often have many opinions (not based in facts) and this is where negative feedback occurs.
The balance between happiness and reality became tricky on social media. There was constantly feedback from our followers that included positive/negative comments. When I posted videos of the positive side (like her infamous “doot diddly” while crafting), people would comment “it must be nice that your mom is so easy.” If I showed more of the negative side- her crying in bed during a sundowning episode, people would comment “please don’t show her like this.” It was a constant internal struggle of what to share. I wanted to share our truth, but I also wanted to be sure to be intentional in what I was sharing and making sure that I was honoring my mom’s wishes in how she would want her story to be shared. She loved her followers, specifically her friends she would talk to on TikTok live on a daily basis as she ate her breakfast. She laughed at videos that were posted of herself. As her caregiver and power of attorney, I was able to make the decision of what to share and when to share it because I was the person that ultimately she trusted to make these decisions. I have no regrets around the content that was shared, as I was also keeping her wishes and dignity at heart even despite the negative comments that would occur.
By sharing our story, I believe that I have helped to change other caregivers/care partner’s journeys and change the stigma around dementia. I have been able to show that you can truly live your best life despite a dementia diagnosis. The love that my mom and I shared is palatable in our videos, which allows for people to connect with our story in a way that you cannot using just words. We were able to support other caregivers, advocate for change, and help people to see that love can exist in dementia through our visual journey.
Follow the Author’s Socials:
Instagram: instagram.com/misspatticake
Twitter/X: twitter.com/carepatti
Tiktok: tiktok.com/@carepartnerpatti
