Still Kathryn: At 21, she cared for a mom with Alzheimer's
It started with small things. A remote control left in the pantry. News about a family event that her mother forgot to relay.
But when Kathryn Fudurich's mother Pat called in a panic from a neighbour's to say she'd forgotten to take her medication, it was clear something was wrong.
"Just to see her questioning herself and uncertain about herself was really scary. It was like who are you?" Kathryn, now 28, tells Dr. Brian Goldman on this week's White Coat, Black Art.
At the time, Kathryn was at college, while her mother was living in the Toronto home where she had raised Kathryn and her two brothers.
She was like my entire everything: my mom, the best friend, the person you could call at all hours of the day.- Kathryn Fudurich , 28, on her mom, Pat, who has early-onset Alzheimer's
'Another big red flag'
Doctors ruled out a brain tumour but suggested her memory loss was related to either menopause or post-traumatic stress disorders caused by her marital breakup.
But Pat's symptoms continued to worsen. She stopped driving at night because she was getting lost. Eventually she could no longer find her way to the high school in nearby Burlington where she was a beloved English teacher. She retired early.
"Another big red flag ... was when she gave me my graduation card," says Kathryn. "I spell Kathryn with a 'K' and (on) the card, my name started with a 'C.'"
Your own parent isn't going to misspell the name they gave you. That was something that was really hard to see.- Kathryn Fudurich
Kathryn's father moved back in to help out while they continued to look for answers.
She was 55-years-old.
"It wasn't the news that anyone wanted to hear, especially my mom," Kathryn says, adding the specific diagnosis is a rare form of Alzheimer's called Benson's syndrome.
Kathryn, then 21, was in an entry-level job outside of Toronto. She quit and moved home to help care for her mother.
"I don't think anyone put it on me, I think I took on a lot because I didn't trust other people," she says of her care-giving role.
Her father and brothers helped out, but she spent most weekdays with Pat, whose cognitive abilities were rapidly declining.
"She couldn't do simple tasks anymore. Just getting something from a cupboard, or turning off or turning on a light."
Pat hated to be alone so Kathryn found it hard to work on her freelance career or find time for herself. At times she was overwhelmed by sadness, anger and frustration.
"I'd think, I wish I had my mom to help me through this situation with my mom. Because that's how I got through everything else."
Kathryn is among the youngest of an estimated two million Canadians who put their careers and lives on hold to care for an ailing loved one.
She says it was difficult to relate to her longtime friends whose lives and careers were progressing. "Their situations were so different. Their parents were healthy. Their parents were still working. Their parents were text messaging them about things."
Finally she connected with a group of younger caregivers whose parents had dementia. Together, they've organized The Memory Ball, an annual event that raises money for research and awareness about early-onset Alzheimer's. Kathryn has also been featured in a documentary Much Too Young which aired on TVO.
Looking back, Kathryn says she lost a part of herself while she cared for her mom.
"It's a weird whirlwind that I can't really remember before my mom got sick. I don't really have a grasp on the past decade of my life."
We never know how much time we have left. But with this disease you never know how much time you have left with the current version of a person.- Kathryn Fudurich
After Pat broke her hip, she became eligible for more in-home care, and a window opened for Kathryn to return to a more normal 20-something life.
She moved into an apartment near her mother's home and is now working in a sales and marketing job.
Today, Kathryn says she has no regrets about spending the time she did with her mother.
"It's made me put life into perspective ... I think what's funny about this illness is time."
- This episode originally aired in October 2016. -