Baycrest

now. I have to learn how to emotionally care for him because he asks over and over again, what's happening to me? So I have to tell the story again. But I can't let him see me upset. That's been a big challenge for me. Then there are the physical challenges. He's a 200 pound guy and you have to lift him. My dad only recently had to go into a long-term care facility. Before that my mom, my brother, my sister and I had to learn things I never thought we would have to learn how to do. And so the biggest challenges are everything. There's nothing easy about it. WHAT DID YOU KNOW ABOUT DEMENTIA BEFORE YOUR DAD'S DIAGNOSIS? What I knew about dementia before my dad's diagnosis was nothing. I really didn't. I didn't pay attention because I didn't think it would happen to us. I guess like everyone else, I thought you forgot things. I didn't know about the emotions that the person with dementia goes through. They get angry, they get suspicious and they get worried. There's a lot that happens leading up to the actual forgetting that's really disturbing for the person going through it and disturbing for whoever's living with the person. There's so much we don't know about dementia. We need to get talking. The more we talk about brain health – the way we talk about taking care of heart health, for example – the better we will all be. WHAT WAS THE INSPIRATION FOR THE HICKEY FAMILY BRAIN SCULPTURE? My mom came up with the idea. It's: I'm in here. Sometimes my dad can't get his words out, but he's still in there. We still get glimpses of him. Our family designed this brain to help illustrate the complex emotions that surround the devastation of dementia. We attempted to capture the feelings of confusion, anxiety, anger, frustration and fixation. We believe that focusing attention on brain health, along with the proper research and funding, can help transform these difficult feelings into those of hope and peace. HOW DO YOU FEEL ABOUT THOUSANDS OF PEOPLE VIEWING YOUR FAMILY'S SCULPTURE? At the very least, I hope that our sculpture gets people talking. When they take a look at it, I hope they say, what's this? And how does this work? The same way I discovered all of it. The Brain Project is a really brilliant way to grab people's attention and start the conversation about brain health. Sales of the unique art pieces also raise vital funds to help Baycrest in its fight to defeat dementia. Since 2016, the Brain Project has raised more than $3 million. The brain sculptures are on display in various locations around Toronto until the end of December. For more information, go to www.brainproject.ca. * Progressive supranuclear palsy causes serious problems with walking, balance and eye movements. It results from deterioration of cells in areas of the brain that control body movement and thinking. The disorder gets worse over time and can lead to life-threatening complications, such as pneumonia and swallowing problems. There's no known cause and no cure. BrainMatters FALL/WINTER 2019 9 Cheryl Hickey with her parents, John and Lori Hickey "The Brain Project is a really brilliant way to grab people's attention and start the conversation about brain health." Hickey family sculpture

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