Awareness Month 2023: Jana

One in two British Columbians believe that a dementia diagnosis means the end of a meaningful life – but this isn’t the case at all. Throughout January, the Alzheimer Society of B.C. is recognizing Alzheimer’s Awareness Month by flipping the script on stigma associated with dementia and highlighting amazing individuals on the dementia journey who continue to find moments of joy, peace and happiness despite the many challenges of the disease. We’re highlighting how British Columbians affected by dementia continue to live full and meaningful lives, showing those around them to enjoy today. 

Among those sharing their story is Jana, a caregiver in Cranbrook, B.C. A registered social worker, regional dementia education coordinator for the East Kootenays and elected official within the Metis Nation of British Columbia, Jana feels caregiving has given her purpose. Since her dad, Roy, was diagnosed, she feels like she has grown personally and professionally because she loves someone living with dementia. 

Jana first noticed changes to Roy’s behavior and memory a couple years before his official diagnosis, when Roy was helping her husband build a fence. She knew something was wrong when Roy – who has a drafting engineer’s degree from the Southern Alberta Institute of Technology and would often turn to woodworking as a hobby – was having difficulty understanding the placement of the vertical and horizontal boards.  

Roy and his family struggled to get the doctor to take his symptoms seriously. It wasn’t until they went to a new physician that they finally felt heard; in January 2016, he was given a diagnosis of early-stage Alzheimer’s disease, and a few years later, a second diagnosis of mixed dementia, including vascular dementia. 

“At first, there was relief because we finally had a name for it,” Jana says. “But on the other hand, even though we saw it coming and knew what it was? For me, it was oh my gosh, what are we in for?”  

Prior to Roy’s diagnosis, he was very active. He golfed, curled, worked at the pulp mill and even had a DJ business. Since the diagnosis, Jana and Roy have spent countless hours together, walking around their favorite spot, Idlewild park and most recently listening to music. “He really loves music, he’ll do a lot of clapping and snapping when the music is playing. He has hundreds of CDs but his favorite is a 1958 rock and roll CD. He really gets snapping and clapping when Jerry Lee Lewis comes on,” says Jana. 

During Jana’s journey, she has learned to share the caregiving role with her mother and to lean more into her culture. She takes comfort knowing that Roy’s journey is bringing him closer to their ancestors and she’s brought an Indigenous perspective to the disease to help create a better environment for Roy and others. Through it all she’s found unexpected gratitude and joy.  

Jana admits she and Roy didn’t used to be as close as they’ve been since his diagnosis. “I wanted to create memories and joy for myself. In a way it was selfish. But I made an effort to get to know my dad through each stage of the journey. Dad just kind of floated along with me, appreciative of the time together.” Even though Roy hasn’t recognized her in years, she still feels love when she see's him.” 

“It’s important not to lose yourself on the caregiving journey,” Jana says. “Despite all the challenges we’ve faced with the disease, there are so many moments that help shield me from immense amounts of grief. I don’t take those moments for granted.” 

Learn more about the campaign 

Want to learn more? Read some of the other stories being shared throughout the month at alzbc.org/FullOfLife.