Melissa Mark's Story
"I will never forget the day I was having lunch with my grandfather,” Melissa Mark remembers. “He was sitting across the table from me, and I asked him if he knew who I was. He smiled at me and said ‘No.’ It was absolutely devastating.”
But despite the confusion and challenges that arise when a family member is diagnosed with Alzheimer’s disease or dementia, Melissa was inspired to take action and become an advocate – especially when her aunt also received a dementia diagnosis shortly after her grandfather.
“My aunt was only 48, and my grandfather was around 74,” shares Melissa. While their symptoms and progression were very different, both her aunt and grandfather’s lives would change drastically.
“I was a teenager at the time, so I didn’t really pay much attention to the signs, but my grandmother had noticed symptoms years before.”
Her aunt was more aware that something was happening to her memory. She and her husband lived in Toronto, and she began to get lost in familiar places.
“The stigma that dementia is an old person’s disease did a disservice to my aunt and her whole family. Because she was so young, the impact of the disease on her family was devastating. Her youngest daughter was 22. She still needed her mom.”
“Melissa’s grandfather and Aunt Sharon”
Soon after their diagnoses, Melissa started volunteering with the Alzheimer Society in Orillia and read as much as she could to better understand the disease. She became heavily involved with the Alzheimer Society, even sitting as a Board Member for three years.
“The Alzheimer Society played a big role in my ability to navigate what was happening with my grandfather and aunt. They helped and supported me.”
In many ways, Melissa believes that the diagnosis brought her and her grandfather closer.
“I was a huge advocate for my grandfather, and I fought for him as much as I could. I became a personal support worker mainly because I wanted to advocate for people with Alzheimer’s.”
There are many circumstances that inform what kind of care options a family chooses, and for Melissa, the person living with the disease must be in the center of those decisions. While her grandfather was treated in long-term care, Melissa’s aunt stayed at home with the support of her husband throughout her illness.
“I can see the side of the story for people who are seeking support through long-term care homes. I can understand the emotion of that decision, because I was with my grandfather when he first moved in to long-term care. I can also understand the home-care side of it, which is the choice that my aunt and her husband made for her. The important thing is to never forget that these people once had lives, careers, children, and all the stresses and emotions of the life that I have now.”
Ultimately, Melissa sees a glimmer of hope as communities are gaining more awareness of the disease and associated behaviours.
“When my aunt lived in Toronto, they lived in a condo near the waterfront. When my uncle would go to work, my aunt would often go to the store across the street and just take what she wanted and leave without paying. My uncle would give them money once a week to pay for whatever she’d take, and they were ok with that. It was an amazing act of community spirit.”
Community is essential. For Melissa, the biggest change needed starts with community. “They say it takes a village to raise a child,” Melissa explains, “but it also takes a village to care for someone with dementia. It’s not just the immediate family that can play a role.”
With greater awareness, communities have a chance to become part of the solution.“A dementia-friendly community would be a community where more people understand the realities of the disease, and how to be diligent neighbours. There’s a stigma that keeps people from helping more; they might just brush them off and say, ‘Oh, they must be crazy,’ where the reality is that they could really use some help.