Alzheimer's Awareness Month 2025: Meet the Morin family

When Janell Morin was diagnosed with Alzheimer’s disease, her family committed to walk with her on the journey. For the past decade, that’s exactly what they’ve done.

Janell and her husband Pierre raised their children on Wet’suwet’en territory in northwestern B.C. Janell is a Tahltan Matriarch – a strong, creative, hard-working woman who raised Kathleen, Nalaine, Peter and Robert to speak up when something isn’t right. That lesson has served them well, perhaps more so than ever in recent years, when they’ve had to be fierce advocates for their mother’s care.  

The Morin family first noticed changes in their mother in 2013, while she and Pierre were living in Surrey.

“Mom would go anywhere – nothing would stop her,” Kathleen says. “She started missing stops on the Skytrain and couldn’t remember where to get off. Dad would get phone calls and have to go find her.”

Around the same time, Peter was teaching art history at UVIC, working with his students to make the world’s largest button blanket – an art he had learned from his mother. When the blanket neared completion, Peter invited her to see their work and meet his students.

“I thought, of course Mom’s going to come,” Peter says. “We’re talking about somebody who is absolutely vivacious, someone who is able to talk to anyone. And then she didn’t come.”

Peter knew this was an incredible change, but the alarm bells quieted when his mother joined him later that year at a youth and elders Talking Circle on Valentine’s Day. However, when it came time to introduce herself, she was too shy to introduce herself, so Peter had to do it for her.

The mounting concerns from family led to a doctor’s visit and later assessments, which resulted in a diagnosis of Alzheimer’s disease.

“It was pretty devastating, but Mom’s spirit is so strong,” Kathleen says. “She was like, ‘I’m gonna beat it.’”

The family learned about the disease together, spending countless hours researching. They also learned that Janell’s experience is part of a longer family story; several of her siblings, nieces and nephews are currently living with the disease. Their grandmother lived and died with Alzheimer’s disease; after speaking to family members, her children discovered that their great-grandmother and great-great grandfather also showed symptoms.

“My great-grandfather’s name was George. My family shared that people in the community knew something was different about him,” Kathleen says. “This was a long time ago – early settlers were still arriving. There was no diagnosis, but everybody knew to keep extra eyes on him. It takes a village, right?”

Learning more about the changes in Janell included honouring their collective experience by using language that felt right for them. 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.”

In 2013, while Peter would travel back and forth from Victoria to spend time with his mom, the rest of her children were still up north. After spending most of her life living rurally, Janell was not keen to leave the city – but as her symptoms progressed, Pierre knew he needed more help.

“Dad reached out to me and I said, ‘Well, let’s get you up here,’” Kathleen says.

With some help from Nalaine, Kathleen bought a home with room for a trailer for her parents to live in. Pierre wasn’t sure how to convince Janell to leave the city, but after the siblings packed up all their belongings and set them up in their new home, Janell simply said, “Well, I guess I’m living here now.”

Once settled, Janell seemed happy to be around family and Pierre was grateful for the help. Kathleen associates this time with the many phone calls she’d receive from her mother while teaching elementary school.

“One day I told the students, ‘My mom has Alzheimer’s disease and I think she’s going to call, so I hope you don’t mind because I want to answer,’” Kathleen says. “She called at 10 and then again at 10:30. The calls continued off and on for a long time. It was great because the kids would say, ‘Hi, Mom!’ When the calls stopped, we all really missed them.”

Janell lived at home with her family for almost eight years. They did everything in their power to keep their mother at home for as long as possible, spending countless hours researching, learning new skills, communicating with health-care organizations and trying to find resources that would work for their unique situation.

They had some luck. Nalaine recalls an organization in Surrey that helped answer questions early on, Kathleen called the First Link® Dementia Helpline when she needed someone to help her through some particularly challenging moments and Peter found videos that other people had shared online that helped them learn more about family-centered care. Although they were able to find some resources, what they found was inadequate for their family’s needs.

“Everyone’s unique, right?” Nalaine says. “Being an Indigenous family, it was even harder to find what we needed. It seemed like a lot of health-care professionals assumed we’re uneducated. Sometimes we’d ask a very specific question and it was answered like we’re six years old. It’s not helpful.”

Reflecting on the years leading up to Janell’s move to long-term care in 2021, the family wishes they’d had more resources that could have helped them keep her home with them for longer. As symptoms progressed, ensuring her physical safety became more challenging. With reliable home care support from nurses or a safety assessment of their house, they feel they could have cared for her at home longer.

When the Morin family made the tough decision to walk with their mom into the care home, they hoped the increased support would allow them to spend more quality time with her. Just as their great-great grandfather’s community had kept watch over him, the siblings hoped the care home staff would be a part of their village and help them care for their mother. It wasn’t long before they realized they’d need to speak up to ensure their mother was well-cared for now, more than ever before.

The Morin family has dealt with several incidents since Janell moved into the care home. Some have been frustrating, others terrifying and many have left the family exasperated. After several trying care conferences, they filed a complaint, feeling their mother’s basic human rights weren’t being met.

“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. “They hadn’t considered who this generation is and they needed more awareness of what they were doing in their care work. This is also reconciliation and it needs to be addressed now.”

The family’s experience in the care home highlighted what they already knew: the health-care system was made for settlers and is not safe for Indigenous people.

“If we want to see meaningful change, organizations that want to provide support to Indigenous communities must first acknowledge we don’t trust them,” Nalaine says.

“It’s not enough to say, ‘the system is broken.’” Peter says. “Who benefits when we say that? It’s not us. We need them to love our mom.”

“We shouldn’t have to advocate for a racist picture to be taken off the wall, right?” Kathleen says. “We’ve witnessed open racism and then realized we have no choice but to leave our mom with the same people who are causing her harm. You can’t just write ‘culturally safe’ on the wall and call it a day. People and organizations need to be held accountable.”

Janell’s husband and children have learned to use some of the equipment in the care home to help their mother get around and Kathleen and Nalaine bathe her once a week, on Sundays. People often tell them they’re amazing for the time and care they show their mom, but the compliment usually leaves them frustrated.

“We’re here to be a family, we’re not here to do their job,” Peter says. “We’ve chosen to take on these actions as a way to show love to our mom and share love with her.”

After walking the journey with their mother for over ten years, the family’s goal now is to continue surrounding her with love, ensuring that every decision they make going forward is about increasing her peace and their own.

“Someone told me recently that if they could do it all again, they’d care for their family member the same way we cared for Mom,” Nalaine says. “We want people to know that it’s okay to walk this journey with your loved one.”

It’s not easy for the family to share parts of their journey with their mother and they would not be doing so if they didn’t believe that systemic 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. She didn’t take this journey just to be forgotten and she knows that we are going to advocate for her.”

These days, when Janell doesn’t always recognize her husband and children right away, but when she looks at them after a few glances, her face lights up with a smile.

“I just feel like that’s her heart,” Kathleen says. “Her heart knows that it’s me. The heart always knows.”