When the Morin family made the decision to walk with their mom, Janell, into a care home, they hoped increased support would allow them to spend more quality time with her. Just as their great-great-grandfather’s Tahltan community kept watch over him when he showed signs of what is now understood as Alzheimer’s disease, they hoped care home staff would be a part of their “village.”
It wasn’t long before they realized they’d need to speak up to ensure their mother was well-cared for, more than ever before.
January is Alzheimer’s Awareness Month, an opportunity for people to have conversations about dementia. The Alzheimer Society of B.C. is recognizing Alzheimer’s Awareness Month by sharing the experiences of people like the Morin family.
Since making the decision to move their mother into care, Janell’s children have faced significant challenges in ensuring that care is culturally sensitive and culturally safe. “Look, this is the generation of Indian Residential School Survivors who are now needing this type of support and we need better solutions to support them properly,” Peter says. “This is also reconciliation and it needs to be addressed now.”
When Janell was first diagnosed, the family learned about the disease together, which included honouring their experience by using language that felt right. Rather than referring to “Alzheimer’s disease,” Kathleen prefers the phrase, “the heart always knows.”
“I hate that I say a white man’s name 100 times a day to speak about our mom’s experience,” Peter says. “Indigenous families have to use a white person’s name in order to make a relationship with this experience, so ‘the heart always knows‘ is so beautiful because it doesn’t give away our power.”
It’s not easy for them to share their journey but they would not be doing so if they didn’t believe that change is possible.
“I really want the story to be shared,” Kathleen says. “I want my mom’s legacy to live on because she would want her story to be shared.”
Take part
In January, caregivers and people living with dementia will explore this year’s Alzheimer’s Awareness Month theme by sharing their unique journeys living with the disease in two virtual panel discussions.
- Lived experience: Different roadmaps for dementia on January 15 from 2 to 3:30 p.m. PT
- Lived experience: Different roadmaps for caregiving on January 22 from 2 to 3:30 p.m. PT.
Find support
If you have questions about Alzheimer’s disease or other dementias, call the Alzheimer Society of B.C.'s First Link® Dementia Helpline for information and support (toll-free in B.C. only):
- English: 1-800-936-6033 (Monday to Friday, 9 a.m. to 8 p.m.)
- Cantonese and Mandarin: 1-833-674-5007 (Monday to Friday, 9 a.m. to 4 p.m.)
- Punjabi, Hindi and Urdu: 1-833-674-5003 (Monday to Friday, 9 a.m. to 4 p.m.)