Meet Emma

Meet Emma

A Young Daughter's Journey: Love, Loss, and the Choice to Become Better

In photos: Emma as a youth, with her mother, father, and her cousin (wearing the wedding dress her mother made); And Emma at her recent wedding, wearing the same dress.

When Emma was 11 years old, her world changed forever. Her mother, Allison, was diagnosed with young-onset dementia at just 49 years old. What followed was a twelve-year journey that would test the family's strength, redefine Emma's understanding of caregiving, and ultimately teach her that even in life's hardest moments, we have a choice in how we respond.

A Life of Creativity and Colour

Allison was an artist through and through. A seamstress by trade, she spent her days in her sewing room, creating beautiful things. Her creative path began at the Alberta College of Art and Design in Calgary, and led her to making costumes for the Alberta Ballet and the National Ballet of Canada. In 1988, she worked on the opening ceremony costumes for the Calgary Olympics - a project that would change her life in an unexpected way.

It was during the Calgary Olympics that Emma's mother and father met for the first time; him on the hospitality board and her creating iconic costumes. After the games, they ran into each other more than once, eventually falling in love and creating a family.

"She was always wearing fun outfits," Emma remembers fondly. "My dad told me that on one occasion, she wore polka dot bloomers to a party and on one of their first dates, she showed up in a corset top, long before it was cool. When I think back, her fashion inspires me to this day."

That creative, bold spirit defined everything Allison did. Emma's childhood Halloween costumes were legendary. "I remember picking out the pattern I wanted and she'd have it made in a day," she says. Bolts of fabric still remain in the family home, a testament to a life spent creating.

The Diagnosis That Changed Everything

When Allison was diagnosed, Emma was 11, as was her twin brother. Their older sister was 14. Looking back, Emma realizes the signs had been there; her mother getting lost on the way to familiar places, her temper flaring in uncharacteristic ways.

"The diagnosis brought clarity in the moment," Emma explains. "Of course it was terrible, but leading up to it, we had been so confused by her behaviour. She would take me to my best friend's house every week, and she suddenly didn't know how to get there."

The night her parents told them, they gathered at the family’s dining room table. Emma had heard of Alzheimer's - her grandmother had died from it just a year earlier - but she didn't fully understand what it meant. They had attributed Allison's extreme sadness and changes at the time of her own mother’s death to menopause or depression over losing her mother, but now the picture became clearer.

Despite the devastating diagnosis, Allison was determined. "My mom told us she was going to do everything she could to fight this," Emma recalls with a shaky voice.

Growing Up as a Caregiver

The first few years after diagnosis were manageable, but when Emma turned 14, everything intensified. When she failed her learner's driver's license exam, she was crushed. She knew her mother could only keep her license if someone else who was licensed drove with her, and Emma felt she had failed the family.

She eventually got her license and entered high school, when she stepped into a clearer caregiver role. Her father orchestrated an intricate schedule, taking the kids to school, returning home until homecare arrived, then going to work. At the end of the school day, he'd come home to meet the kids before returning to work again.

"My dad is a saint," Emma says. "We wouldn't have gotten through it without him leading the way." Remarkably, he ensured the children could continue their extracurricular activities. Emma kept dancing[2.1]; her brother played football. "It gave us a sense of normalcy," she reflects.

During the afternoon hours that Emma and her siblings were home with their mother, they helped her shower, cooked meals, and provided companionship. Emma would help untangle yarn while her mother knitted - and then untangle it again - and accompany her on the walks Allison loved so much.

Emma's aunt transformed a collection of knitted squares by Allison into a treasured blanket. "I love when I can wrap myself in it," Emma says.

"I didn't love walking then, but now it makes me feel closer to her." Today, Emma and her husband walk together daily, keeping that connection alive.

The Struggle to Separate the Disease from the Person

Being a teenage caregiver came with challenges that Emma still processes today. As the disease progressed and her mother changed, Emma struggled to see the fighter her mother had promised to be.

"I ended up forgetting that was her attitude in the beginning because she changed so much," Emma admits. "I feel bad about it now, but I remember thinking, 'How are you trying? I don't see you trying.' If I knew then what I know now, I'd go through it differently. I'm older now, I have a lot more patience, and I would be able to separate the disease from the person. I really struggled to do that at the time."

She's learned to extend grace to her younger self: "I have to remind myself now that I was too young to have understood."

Despite the pain she still feels, Emma sees how the experience shaped her. "It has made me a better person. I don't know that I needed to learn it that way, but I truly feel I had a choice to become a better person or a worse person because of it, and I chose better. I figured if I couldn't change it, I didn't want to become a hard person."

Finding Light in the Later Years

In spring 2016, Allison moved into a care home. Emma has special memories of walking with her mother in the neighbourhood nearby. "It was down the road from her first apartment in Calgary and she knew the area really well. She'd point out the same things in the neighbourhood every time. Now, that area feels really special to me."

The family - who had participated in the Alzheimer Calgary Walk and Run since Emma's grandmother was diagnosed in the mid-2000s - continued to do so during her mother’s journey. The organization's other programs, especially the ones Emma’s father could experience with his wife, became lifelines.

Club 36 was particularly meaningful. As an artist, Allison thrived in the program's creative activities. She created artwork during her time there, pieces that now hang in Emma's home as treasured reminders of her mother's enduring creativity.

A New Understanding of Love

Allison passed away at 61, when Emma was 23. The loss is still very difficult for Emma, but the years since have brought new perspectives on what those caregiving years meant.

Watching friends and siblings now become parents has been particularly healing. "Seeing other people with their little ones makes me realize, 'Wow, my mom loved me that much,'" Emma shares. "Watching my sister plan my niece's 2nd birthday - the weeks of planning and everything she did to make it special - I had no idea my mom did those things for me. But she did."

Emma has come to see her caregiving role as a full-circle moment. "When I was caring for my mom, I remember thinking, she used to take care of me this way and now I'm doing it for her, and that's okay. She fed me, and I got to feed her. She bathed me. I got to help her in the same way. I'm understanding my relationship with her at that time in a different way now. It was an honour to be able to take care of her."

Keeping Memories Alive

Emma keeps her mother's memory alive in countless daily ways. She has Allison's art portfolio filled with her drawings and handwriting. She bought a dress printed with birds of paradise - her mother's favourite flower. On a recent vacation with her husband, she photographed every place she saw the name Allison, which was strangely and beautifully often.

"I continue to talk about her, even though I know I’m going to cry," Emma says through tears. "People are often scared to ask me about her, which I understand, but I've learned with my own friends who have lost loved ones, to ask anyway; keep talking. It's not a bad thing to say her name."

Her advice to other caregivers, especially those who are younger, centers on acceptance. "I didn't want to accept what was happening. It felt like the worst thing that could happen to me. I was in a lot of denial. But once I was able to accept it was our reality, it became possible to get through it. It's okay to tell yourself, 'This really sucks and it shouldn't be this way,' but it's helpful to get to a point where you can understand that you have a choice in how you view it."

A Legacy of Hope

True to her promise to fight, Allison participated in every research study she could. After her death, her brain was donated to the University of Calgary for dementia research - a final contribution to the cause.

"With her own mother having gone through it, my mom saw the impacts dementia had on people around them, and she would want to be a part of a cure," Emma explains. "The absolute best scenario is if there is a cure as a result of her."

Allison's legacy lives on not just in research, but in the creativity and empathy she instilled in her daughter. Emma wears dresses inspired by her mother's bold fashion sense. She wraps herself in blankets made from her mother's knitting. She walks daily, feeling close to the woman who loved walking so much. She supports her friends in ways only someone who has experienced great loss can.

And perhaps most importantly, Emma chooses to let her experience make her better, not bitter - a choice her mother would surely have celebrated, and one that offers hope to every family walking a similar path.

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