Caring for my sister with Alzheimer’s is challenging. We’ve identified solace in creating TikToks

This Initially Human being column is the expertise of Jean Collins, a caregiver to her sister Kathy Collins who was diagnosed with early onset Alzheimer’s. For a lot more information about CBC’s Initially Man or woman tales, be sure to see the FAQ.

On a scorching working day in July 2018, my sister and I clung to a single a further in the parking lot of a clinic in Duncan, B.C. She had been identified with early onset Alzheimer’s ailment. She was 56.

The working day she was identified brought a substantial relief to Kathy. She last but not least understood what was taking place to her. But reduction was not how I felt. I was gutted. All of us who like her ended up.

A diagnosis like Alzheimer’s is the demise by a thousand cuts. At first, it was Kathy’s voice contacting from another space, “What was I going to get again?” We would chuckle as I yelled, “Paper towels!”

Then, it was identifying she could no for a longer period go through a encounter clock. A minimize. Then, she couldn’t place absent silverware or shower independently. The indignity of incontinence. A different flinch. A further reduce. 

She began shadowing me. Inches away from my overall body almost generally. Her dependence and aim on me is relentless. Yet another slice.

A smiling blond woman at a restaurant table.
Kathy Collins in 2014 when she was symptomatic but as of still undiagnosed. (Submitted by Joan Collins)

Producing surprise and a contemporary response to a story she’s explained to me hundreds of times. Keeping her in my arms as she sobbed and wailed, “Why is this happening to me?” The instances she gets to be offended with me around owning to wash her favorite dresses, which she needs to dress in day in, day out. Or receiving into her pyjamas at bedtime.

Because her analysis, my laser concentration has been on Kathy. Hardly ever do I cry, besides when on your own. Locking the toilet door and turning on the faucet when she is house, making an attempt to stop the tears. Deep breaths in. Cold h2o on face.

The fantasy of Prometheus comes to brain, hyperbolic as it may possibly be. As a punishment from Zeus, he was chained to a rock and each and every working day an eagle would try to eat his liver. Right away it would improve back again, and his groundhog day from hell would start out anew.

In 2019, Kathy and I moved in with our elderly mother and father to help her. At that time, she was in the previously stage of this excellent unravel. Brilliant, funny, stunning, in a position to talk about her extraordinary existence.

Becoming an ‘Alzheimer’s star’ on TikTok

In April 2020, we downloaded TikTok. We expended hrs scrolling via the creative, hilarious, shifting posts. As the black cloud of pandemic rolled about the globe, bored, fearful and in lockdown, we impulsively produced a video clip displaying Kathy in her bed room, conversing about the Post-it notes on her partitions. They assisted her bear in mind things.

A few TikTok posts later on, The Kathy Job exploded with sights. Practically two-and-a-50 percent several years in, our account has reached pretty much a few million eyeballs. We have far more than 160,000 followers and we have crafted a solid, compassionate neighborhood. Out of the blue Kathy was an Alzheimer’s star and ambassador. I was “Jeannie powering the digital camera.”

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

Kathy was electrified by this focus. It infused her with a mission to reach other folks, to notify men and women, “this is just not so undesirable.” 

It was all terrific until finally it wasn’t. Now her views fly into the sky like a bubble, ever farther away. When she reaches to touch them, they burst.

Within just our great TikTok neighborhood, people will ask me, “How are YOU accomplishing, Jean?” I practically often respond to, “Terrific!” 

I am not excellent. My parents’s grief is so palpable, our property feels haunted. My youthful sister Laura-Lynn is working with this from a length mainly because she life in an additional town and which is a entire other stage of harm. Her young children, now in their 30s, are viewing dementia take place to their mom.

Finding a group of hope, encouragement and really like

TikTok just isn’t just make-up tutorials and dances any more. It is disability, mental wellbeing, journeys like Kathy’s. Becoming linked to Canadian icons like Jann Arden, who regularly comments on Kathy’s posts. (Hello Jann.) Or Teepa Snow, who is a rock star in the dementia group for her compassionate, modern techniques to treatment. (Hello Teepa.) Other accounts like welcome2dementia that courageously share their individual lived working experience.  (Hi Jana.) 

This summer time I was travelling to pay a visit to my children in Ontario. A TikTok buddy provided to decide on me up from the airport in Toronto, host me overnight and push me to my son’s cottage the next morning, which was a few several hours away. (Hi Beth). For the duration of that take a look at, I achieved her beloved Aunt Lyn, who is also living with Alzheimer’s. Yet another TikTok pal whose tough hug unbreaks my heart, just a minimal. 

A further TikTok good friend whose really hard hug unbreaks my coronary heart, just a small.– Jean Collins 

The quite a few good friends who have crossed the on line barrier into authentic daily life supportive circles. The hundreds of followers who deliver hope, encouragement and love on a day-to-day basis. It has helped enormously.

In February, I suffered a grand mal seizure for the to start with time in my life although driving by way of a university zone. Laura-Lynn was in the passenger seat. She grabbed the wheel and saved lives. We both equally ended up in the ICU and I straight away shed my licence. In the pursuing month, I suffered 3 more seizures. I, also, turned untethered from reality. I was 61.

A portrait of a smiling woman with glasses.
Jean Collins just before the seizures created it unachievable for her to present entire-time treatment for her sister. (Submitted by Jean Collins)

Our spouse and children made arrangements to have Kathy admitted to long-time period treatment. I experienced promised Kathy this would never take place. I was devastated, but realize I didn’t have a preference

So now, three times a week, I scoop Kathy up and deliver her residence for a extensive weekend. Those a few times are three double shifts of depth. Tons of joy and heaps of grief.

Nevertheless, there are mornings when I wake up and forget about this is taking place. I will lie in mattress and it will all rush in, as if my soul is becoming flooded with ice and mud. I wonder if this ever comes about to Kathy.

To all the caregivers out there, this is my unhappy music to you. 

Born and elevated in Ottawa, Jean Collins moved to Vancouver Island in 2008 where she managed applications for grown ups with disabilities. She took an early retirement in 2018 to care for her sister, Kathy. Jean is a mom, grandmother, daughter and sister.

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