Caring for my sister with Alzheimer’s disease is difficult. We found solace creating TikToks

This first-person chronicle is the experience of Jean Collins, a carer for her sister Kathy Collins who was diagnosed with early Alzheimer’s disease. For more information on CBC’s First Person Stories, please see frequently asked questions.

On a scorching day in July 2018, my sister and I clung to each other in the parking lot of a clinic in Duncan, BC. She had been diagnosed with early Alzheimer’s disease. She was 56 years old.

The day she was diagnosed brought enormous relief to Kathy. She finally knew what was happening to her. But the relief was not what I felt. I was drained. All of us who love him were.

A diagnosis like Alzheimer’s is death by a thousand cuts. At first it was Kathy’s voice calling from another room, “What else was I going to have?” We laughed as I shouted, “Paper towels!

Next was discovering that she could no longer read a dial clock. Cutting. Then she couldn’t put the silverware away or take a shower on her own. The indignity of incontinence. Another shudder. Another cut.

She started following me. A few centimeters from my body almost always. His dependence and focus on me is relentless. Another slice.

Kathy Collins in 2014 when she was symptomatic but not yet diagnosed. (Submitted by Joan Collins)

Crafting a surprise and a new reaction to a story she’s told me hundreds of times. Holding her in my arms as she sobbed and moaned, “Why is this happening to me?” The times she gets mad at me because I have to wash her favorite clothes, which she wants to wear day after day. Or put on your pajamas at bedtime.

Since her diagnosis, my laser focus has been on Kathy. I rarely cry, except when I’m alone. Locking the bathroom door and turning on the tap when she’s home, trying to stop the tears. Inhale deeply. Cold water on the face.

The myth of Prometheus comes to mind, however hyperbolic. As a punishment from Zeus, he was chained to a rock and every day an eagle devoured his liver. Overnight, he would grow back and his Groundhog Day from Hell would begin again.

In 2019, Kathy and I moved in with our elderly parents to support her. At that time, she was in the first stage of this great unraveling. Brilliant, funny, beautiful, able to talk about her extraordinary life.

Become an “Alzheimer’s Star” on TikTok

In April 2020, we downloaded TikTok. We spent hours browsing through the creative, hilarious and moving posts. As the black cloud of the pandemic swept over the world, bored, scared and confined, we impulsively made a video showing Kathy in her bedroom, talking about the Post-its on her walls. They helped her remember things.

Three TikTok posts later, The Kathy Project exploded with views. Nearly two and a half years later, our account has reached nearly three million eyeballs. We have over 160,000 subscribers and have built a strong and caring community. Suddenly, Kathy was a star and an ambassador for Alzheimer’s disease. I was “Jeannie behind the camera”.

WATCH | Jean Collins filmed a Tiktok reel of her sister Kathy explaining why they moved in with their parents.

Kathy was electrified by this attention. This gave him the mission to reach out to others, to tell people “it’s not that bad”.

Everything was fine until it wasn’t. Now his thoughts are flying in the sky like a bubble, ever further. When she manages to touch them, they burst.

In our wonderful TikTok community, people will ask me, “How are you, Jean?” I almost always respond, “Great!”

I’m not awesome. My parents’ grief is so palpable that our house seems haunted. My younger sister Laura-Lynn is handling this from a distance because she lives in another city and it’s a whole different level of suffering. Her children, now in their thirties, watch dementia befall their mother.

Find a community of hope, encouragement and love

TikTok isn’t just makeup tutorials and dances anymore. It’s disability, mental health, trips like Kathy’s. Become connected to Canadian icons like Jann Arden, who regularly comments on Kathy’s posts. (Hi Jann.) Or Teepa Snow, who is a rock star within the dementia community for his compassionate and innovative approaches to care. (Hi Teepa.) Other accounts like welcome2dementia who bravely share their own lived experience. (Hi Jane.)

This summer, I was traveling to visit my children in Ontario. A TikTok friend offered to pick me up from the Toronto airport, put me up for the night, and drive me to my son’s cabin the next morning, a three-hour drive away. (Hi Beth). During this visit, I met his dear Aunt Lyn, who is also living with Alzheimer’s disease. Another TikTok friend whose hard hug breaks my heart, just a little.

Another TikTok friend whose hard hug breaks my heart, just a little.-Jean Collins

The many friends who have broken through the online barrier into real circles of support. The thousands of followers who bring hope, encouragement and love every day. It helped enormously.

In February, I suffered a grand mal seizure for the first time in my life while driving through a school zone. Laura-Lynn was in the passenger seat. She got behind the wheel and saved lives. We both ended up in intensive care and I immediately lost my licence. The following month, I suffered three more seizures. I too have become detached from reality. I was 61 years old.

A portrait of a smiling woman with glasses.
Jean Collins before the crises prevented her from looking after her sister full time. (Submitted by Jean Collins)

Our family arranged for Kathy to be admitted to long term care. I promised Kathy that would never happen. I was devastated, but I recognize that I had no choice

So now, three days a week, I pick up Kathy and bring her home for a long weekend. These three days are three double changes of intensity. Much joy and much sorrow.

Yet there are mornings when I wake up and forget what’s going on. I go to bed and everything will rush, as if my soul is flooded with ice and mud. I wonder if that ever happens to Kathy.

To all the caregivers out there, this is my sad song for you.

Born and raised in Ottawa, Jean Collins moved to Vancouver Island in 2008 where she managed programs for adults with disabilities. She took early retirement in 2018 to care for her sister, Kathy. Jean is a mother, grandmother, daughter and sister.

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