A dementia or Alzheimer’s diagnosis can be incredibly scary. No matter who in your life receives the diagnosis, from that point on your life has shifted. But that doesn’t necessarily have to be a bad thing. These two sisters from British Columbia, Canada are using TikTok to bring awareness to early-onset Alzheimer’s, and show the silver linings of the disease.
Kathy and Jean Collins started their TikTok journey while in lockdown from the coronavirus pandemic. One morning in May of 2020, Jean, 61, entered her sister’s bedroom to see Kathy sitting on her bed with the wall behind her covered in detailed sticky notes. Kathy, who was 59 at the time, has been diagnosed with early-onset Alzheimer’s and uses the notes to remind herself what she needs to do each day. Due to Jean and Kathy’s wonderful sense of humor, they found the sight to be quite comical despite the heartbreaking reason for it, and so Jean took out her phone and asked Kathy, surrounded by her reminders, a few questions about what it’s like to live with Alzheimer’s. Together, the two posted to video to TikTok and were surprised at the incredible wave of support that came next.
Shortly after, the sisters’ shared account transformed into “thekathyproject” where they have reached almost 100 thousands followers, and have surpassed 1.5 million likes. With Jean behind the camera, Kathy is able to talk about her diagnosis and share the good days along with the bad. Jean told Being Patient, “A big part of Kathy’s missions is to say, ‘Hey, it’s not all bad. I’m still living my life, I’m still alive.'” Kathy’s aim is to show how she is able to see the brighter sides of her diagnosis, and hopes it will inspired others in similar situations to keep their heads up.
One of the greatest aspects of starting this TikTok account that both the sisters find incredibly rewarding is the connections they make with their followers. Though reading through hundreds upon hundreds of comments may seem daunting, and a negative remark does slip in every now and then, the women find the positives once again and enjoy any time they’re able to connect with someone struggling with a family diagnosis. “For the most part people are really sweet and kind,” Jean said. “You can just scroll through comments, and it’s like this shower of warm water. Many people who have family members going through dementia are comforted when they watch Kathy who is handling this disease with such dignity and grace, and is able to stay happy, calm, and contented.” Sometimes, their commenters will even leave a question for Kathy or a video request, which the women happily answer the best that they can.
There are, of course, bad days and Kathy will be the first to admit when her diagnosis is getting to her. When asked about coping strategies regarding the challenges of early-onset Alzheimer’s she said, “Well, for one thing I’m never angry. I’m just living my life as it is, and I’m in a great family space and a great place here in B.C…. and basically, Jean came in and saved my life.” Kathy compares her dementia to the feeling of having mud in her brain, often causing her to get stuck and lost along the way.
“It’s a big advantage that we’re sisters, because I know her so well that often when she is in the mud like that, I know where she’s trying to go,” Jean continued. “Nowadays for any tasks, I’m just there to support her. It’s not, ‘Go do this, Kathy;’ It’s, ‘Let’s go do this together.'” Included in this assistance is finding ways to keep Kathy interested in tasks she needs to do frequently. As time has progressed, bathing became more of a challenge for Kathy, and so Jean created a relaxing, spa-like experience for Kathy to enjoy.
Jean and the sisters’ parents are ever-aware of the concerns surrounding consent. As Kathy’s condition worsens, she may reach the point where she doesn’t understand that she’s being filmed. She might not remember that she and her sister had a TikTok account together, and it can become difficult to know if she would be happy publishing those videos. “It’s just an interesting notion that, in some sense, when Kathy’s unable to really represent herself as she is now, we can continue on with Kathy’s message,” Jean said, explaining how she hoped to give advice to their shared followers in Kathy’s stead when the time comes.
Kathy and Jean post regularly on their shared TikTok, and are consistently growing their following. Be sure to check out all of Kathy’s advice and the sisters’ great sense of humor on their page! If you’d like to contribute to Alzheimer’s research and care, consider this gift that gives more.Whizzco