A caregiver's living legacy

Susan Macaulay shares her journey as a caregiver so that others can learn from her experience

Susan Macaulay

Susan Macaulay made a vibrant livelihood across two continents. Her work in communications and PR spanned the private and public sectors in both Canada and the Middle East, and she owned a successful consulting business in Dubai. Susan traveled the world, enjoying the fruits of her labor. “I had everything,” she says warmly.

What she didn’t have was proximity to her mother, who lived in Quebec. When her mom was diagnosed with Alzheimer’s in 2006, Susan adjusted her schedule so that she could spend 3 months of the year in Canada. By 2011, she knew her mother needed her full time. While grateful to be in a position to do this, Susan says “I dragged myself back kicking and screaming. Most [caregivers] don’t have the skills and are not trained for the role. I felt like I was thrown into the deep end without water wings.”

Susan moved into her mom’s house, and with the help of a personal support worker (PSW) managed 24/7 care. “That wasn’t enough,” says Susan. “Looking back, it’s easy now to see how much care someone needs. And caregivers need support. They break.” Susan recounts her experiences with a raw quality that paints a vivid picture of what a caregiver’s life is like: not only heartbreaking and frustrating, but also filled with opportunities.

For Susan, her biggest ‘aha’ moment came with the diagnosis of dementia itself. “There is such a stigma with dementias,” she says. “People often think that once they or someone is diagnosed, that’s it, game over. But that’s simply not true. There’s still a lot of potential for joy, happiness and growth.” Susan believes that people need to change their attitudes. “You can change your experience if you change your attitude.”

Now, with her mother having passed away, Susan is working towards a new goal: to help people on the caregiver journey. “It doesn’t have to be so hard,” she says. That’s why Susan started My Alzheimer’s Story, a website and blog about the journey taken by those who are diagnosed and their caregivers. “I want to give meaning to what happened to my mother. I want to take that experience and turn it into something positive.” Hers is a living legacy that will help others heal as they carry on this important work.

You will find Susan’s blog posts both meaningful and practical, and you can read them at My Alzheimer’s Story.

Susan's tips for caregivers:

  • Get support. Even if you're managing alone now, you will need help and you need a break. Get the help before you're drowning.

  • Take advantage of resources on the Internet and through the Alzheimer's Society.

  • If you're also looking after your own children, keep them involved. It's a growing opportunity for them, too. 

  • Try the approach Susan developed for coping with changing behaviors. It's called BANGS (read more about BANGS):

    • B: Breathe

    • A: Accept, Assess

    • N: Never, Never Argue

    • G: Go With the Flow

    • S: Say You're Sorry