by Contributor on Thursday January 12 2023
“At first, there was relief because we finally had a name to it,” says Jana Schulz. “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?”
Schulz is a caregiver to her father Roy, who lives with dementia. Along with many others across the province, she’s participating in the Alzheimer Society of B.C.’s Alzheimer’s Awareness Month in January. The campaign aims to flip the script on stigma associated with Alzheimer’s disease and dementia.
The campaign shares tips and tools to support living with dementia, while highlighting amazing individuals on the dementia journey who continue to find moments of joy, peace and happiness.
Schulz is a registered social worker working as a regional dementia education coordinator in the Kootenays. She’s also an elected official within the Metis Nation of B.C.
She began to notice small changes in her father’s behavior and memory a few years prior to his diagnosis. The moment that crystallized things for her was when Roy – who has a drafting engineer’s degree from the Southern Alberta Institute of Technology and often turned to woodworking as a hobby – was having difficulty understanding the placement of the horizontal and vertical boards while he was building a fence with her husband.
Roy and his family struggled in the early stages to get the doctor to take the symptoms seriously. It wasn’t until they went to a new physician that he was diagnosed in January 2016 with of early-stage Alzheimer’s disease. A few years later, he received a second diagnosis of mixed dementia, including vascular dementia.
Prior to Roy’s diagnosis, he was very active. He golfed, curled, worked at the pulp mill and even had a DJ business. Music was and still is a big part of his life. Since the diagnosis, Schulz 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 Schulz.
During her journey, she has shared the caregiving role with her mother and leaned 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.
“With an increased prevalence of the disease, it’s important that we’re educated and have the right tools at hand when we need them,” says Gabrielle Brideau, a support and education coordinator for the Society in the West Kootenay region. “One in two people in B.C. think dementia is the end of a meaningful life, yet 84 per cent of the people in our community who use our programming say they feel more confident when they apply what they’ve learned in their daily lives – which goes to show you can continue to live well with the disease.”
As Schulz continues her caregiving journey, she feels that it has given her purpose and since Roy’s diagnosis. She feels like she has grown personally and professionally because she loves someone with dementia.
“It’s important not to lose yourself on the caregiving journey,” she 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.”
During Alzheimer’s Awareness Month, the Alzheimer Society of B.C. encourages residents to visit alzbc.org/FullOfLife to find resources, tips, tools and support.
Are you concerned about dementia?
- If you are concerned about dementia or have recently received a diagnosis, you may be feeling anxious about what lies ahead for you. The Alzheimer Society of B.C. can help. To learn more about getting a diagnosis or find services for people living with the disease, visit alzbc.org/FullOfLife or call the First Link® Dementia Helpline at 1-800-936-6033. You can also learn more through by checking out what’s on in January:
- Staying healthy and building resilience in a time of change and uncertainty (webinar): Learn self-care tips and strategies to positively manage stress for both caregivers and people living with dementia. Wednesday, January 11, 2 to 3 p.m. PT
- Instantaneous Blue (in-person event): A semi-autobiographical play about a family’s struggle with dementia, written by Aaron Craven. Includes a post-play talkback moderated by The Alzheimer Society of B.C. CEO Jen Lyle, with actors of the play with lived experience. Saturday, January 15, 1 p.m. PT
- An introduction to brain health (virtual workshop): It’s never too soon or too late to make changes and to learn strategies to maintain or improve your brain health. Tuesday, January 17, 2 to 3 p.m. PT
- Considering the transition to long-term care (webinar): Learn about how to access long-term care and factors to consider when planning a move. Wednesday, January 18, 2 to 3 p.m. PT
- Living safely with dementia (virtual workshop): Explore how people living with dementia and their families can live safely in the community. Thursday, January 18, 2 to 3 p.m. PT
- Conversations that matter: Aging with choice (virtual panel): Alzheimer Society of B.C. CEO Jen Lyle moderates a panel discussion on issues related to ensuring people with lived experience are able to age in the best way possible. Friday, January 27, 2 to 3 p.m. PT
To learn more about what’s on in January visit alzbc.org/FullOfLife.
Photo Caption: Jana Schulz and her dad, Roy at Idlewild Park.