Fartumo Kusow's mother was a storyteller, sharing her memories of growing up and creating an oral tradition she has passed on to others.
Kusow's mother, Timiro Mohamed, was diagnosed with Alzheimer's disease in 2011 and can't tell those stories anymore, so Kusow started a podcast to keep the tradition alive.
"My mother is a brilliant woman — was a brilliant woman before Alzheimer's. She couldn't read or write. She had a lot of challenges growing up, but she made sure we were all educated. Seven of us, especially my sister and I," Kusow said.
"She was so smart that I didn't even know she couldn't read or write until I was 15."
Her mother's storytelling ability is one of the hardest parts of dealing with the disease, Kusow said.
"The biggest challenge is that because she was very articulate and a good storyteller, now it just breaks my heart. It's every time when I walk into the room when I could tell she wants to tell me something and she can't put the words, phrases, sentences together," she said.
"It's almost like I'm losing her over and over again every time that happens because I know who she was."
'Remember the person'
Kusow's podcast — called My Mother: The Person and the Patient — talks about being a caregiver, the challenges Alzheimer's brings and allows her to share her experience in the hopes that others going through a similar situation can benefit.
"No. 1 goal for me is if we could remember when we're caring for loved one, whether it's illness or disability, that if we could remember the person besides whatever limitations that they have, kind of like understanding that there is a person behind the illness or behind the disability," she said.
"And also feeling everybody who's giving care is facing challenges and the challenges may be different, but they're all challenges."
But it also brings back the stories Mohamed once told her.
"I would write the stories about her that she told us as children about her growing up from the time she was six and on until she married my father," she said.
"I decided to create this podcast where I look at, you know, my mother, who she was as the person. And who she had become. So we celebrate both sides of her and not just make the disease define who she is or how we remember her."
'She was by my side'
Kusow said Mohamed moved in with her in 2009 to help her care for her kids.
"When I became a single parent of five children in 2009, she moved in with me and with no questions, without, you know, making me feel bad why your marriage failed. All kind of things she just said, you know, tell me what you need me to help you with," she said.
"She was by my side until she was diagnosed. Even when she was diagnosed for the first couple of years were OK."
Now Kusow cares for her.
In Canada, most people living with dementia reside at home. In 2015 and 2016, 69 per cent of seniors with dementia under the age of 80, and 58 per cent of those over 80, lived in the community and outside of the long-term care systems, according to 2018 data from the Canadian Institute for Health Information (CIHI) included in the Landmark Report released in 2022.
And most caregivers for people with Alzheimer's are adult children, making up 58 per cent of those providing care in the home, according to CIHI data.
And further information from Statistic Canada shows women make up the majority of unpaid caregiving for people living with dementia.
For more stories about the experiences of Black Canadians — from anti-Black racism to success stories within the Black community — check out Being Black in Canada, a CBC project Black Canadians can be proud of. You can read more stories here.