Meet our Walk Spokesperson Alicia

The Alzheimer Society of Niagara Region had the privilege of meeting with our 2022 IG Wealth Management Walk for Alzheimer's spokesperson, Alicia, to hear about how Alzheimer's disease has affected her, and her family's lives.

Growing up

Can you tell us a bit about your Dad and what it was like growing up for you and your siblings?

"To know my dad before Alzheimer’s was a true gift. Growing up in the north end of St. Catharines, Dad was your typical boy in the ’60s. He was curious about everything; one time telling my sisters and I how he took apart an alarm clock, just to see how it was made, and then put it back together. I also remember a less successful story of when he took apart my Nana’s radio, and the look on her face when she saw the pieces of her radio strewn across the floor of his bedroom.

Dad worked hard at General Motors, but his true job was being a dad and a husband.

My dad married my mom in 1984, and together they had my older sister, then me, and completed our family with my younger sister. Being the only male in the house never fazed him. I actually think he loved being surrounded by all of us girls. He was kind, gentle, and understanding as a dad; always showing up to our various sporting events, school plays, and never missed taking us to school on the first day.

Our childhood was filled with so many beautiful family moments. He built us a playhouse in the backyard, would play hoops with us on the driveway, and one year built a skating rink in our backyard. I can still remember skating out there late at night, with Christmas lights shining on the rink, and knowing just inside, my dad was there, keeping an eye out for me.

I think one of the most special parts of Dad was that he was the kind of Dad that each of us needed. As sisters, we have many things in common, but we were (and still are) so different. Dad always knew what we needed.

He and Mom created a beautiful life for us, in a home that we have always lived in. Often the house would be filled with music, or the sound of Dad working away in the basement fixing something or bandaging up a scraped knee. I can’t smell sawdust without memories of my dad flooding my mind, of the many times he would lend a helping hand to a friend or neighbor. Often one of us would go along with him on the 'odd jobs' he did, and the afternoon always ended with an 'Avondale lunch', as we called it. Also known as 'Dad had the three girls to feed' and let us loose in the local convenience store.

Our family is the luckiest to have our dad. Alzheimer’s takes away so much, but it will never take away the life he gave us."

The Diagnosis

When did you start noticing changes in your Dad?

"It was difficult to pinpoint when we first saw the changes in Dad. The year he was diagnosed, we were all still grieving the loss of Dad’s Mum, our Nana. Nana passed away in 2016 from Alzheimer’s, with my mom and dad as her primary caregivers. He was diagnosed less than a year later when my mom noticed changes in him."

What was it like for you and your family when your Dad received his diagnosis?

"It was devastating when Dad was diagnosed, as it seemed almost impossible that our dad, after caring for his own mum, was now starting the heartbreaking journey of Alzheimer’s. It was a hard time to navigate our feelings while watching Dad start to come to terms with his diagnosis.

The year Dad was diagnosed, I was 28 years old and had just started a new career. It was at the time that I had landed my dream job and Dad was so excited for me. I remember the day that I was offered the job - I called him and mom, and with both of them on the phone, I told them the news. I will never forget how proud they were. I felt cheated and scared when my mom told us about his diagnosis. It didn’t seem real, as I had often referred to my dad as my hero, and I know my family felt the same pride to call him ours."

Reaching out for help

When did you get connected to the Alzheimer Society and what has your experience with the Society been like?

"When our Nana was going through Alzheimer’s, we connected with the Alzheimer’s Society. They provided a respite program that Nana enjoyed going to and helped provide us with the education and support our family needed while navigating this. When Dad was diagnosed, we began to explore the other programs and support services offered.

It’s incredibly hard to put into words how the Alzheimer Society has helped. It feels like the glue that holds the confusing pieces together. There are so many questions to be asked and decisions that need to be made as a family, and having their support and guidance has been essential. Our family has the kindest social worker that has been supporting us throughout this journey. I’ve always thought that you must be a special type of person to be in that kind of role, and that has truly been proven over and over again, as everyone we have met has shown so much compassion and support. You feel like a part of the family."

Why did you decide to join the Walk last year and become a Walk Spokesperson this year?

"I was sitting at home one evening, thinking about my dad, heavy-hearted but also feeling grateful. The Alzheimer Society has been there for my family, and for so many others, and I knew I wanted to give back. The response I received from family and friends, and the support towards the walk was incredible. I was floored by how many people reached out and donated. It was a true testament to the man my dad was and still is. When the opportunity arose to honor him further as the Walk Spokesperson, I knew in my heart that it was what I needed to do."

Words of advice

What would you like other people to know about living with early onset dementia?

"It is going to affect everyone in the family differently. For my mom, it is the loss of her life partner, the man she had pictured herself growing old with. For my sisters, we are grieving the dad we used to know and trying to navigate a future that we never pictured. Grief is going to look different to everyone, and that is okay. There is no comparison or competition. Living with Alzheimer’s is a complicated journey, but at the end of the day, we are a family."

How can people show support for others living a similar journey?

"As someone on the outside, a family grieving isn’t always going to look the same. A simple message or phone call, just to check in, goes a long way. There might be times the person you love and are reaching out to doesn’t want to talk about how they are feeling that day, but just letting them know you are thinking of them might just be what they need. Encouragement to meet for a coffee or for a walk is helpful, as there are days when the caregivers haven’t left the house. Alzheimer’s is so difficult to understand, and often we find ourselves not being able to understand how we are feeling. Patience and kindness go a very long way."