i tell my mom’s story to help improve dementia care worldwide


I strongly believe that people who live with dementia and their care partners need to speak out and tell their stories if dementia care is ever to reach the standard it should be at in Canada and around the world.

During the last four years of her life, I visited my mother virtually every day in a place I came to call “Dementia Jail.” While it was good for both of us, and essential for Mom’s overall well-being, at the same time it was traumatizing for me.

“I feel like I’m watching mom being slowly tortured to death every day,” I told my friends.

When Mom died, I realized just how much those daily visits had impacted me. I have no doubt that I experienced some form of post-traumatic stress in the weeks and months following her death. The neglect and abuse I witnessed caused me to become a dementia care advocate. The 600+ posts on this blog comprise a part of my advocacy. But I also actively seek opportunities to tell her story in different ways.

On October 24, 2018, I was one of three facilitators to lead a workshop called “Preventing the Use of Physical and Chemical Restraints: Finding Alternatives” at Together…Promoting Wellness, a one-day conference spearheaded by Disability-Life-Dignity (Handicap-Vie-Dignite), which was aimed at addressing the issues of neglect and abuse in Quebec’s long term care facilities. This is the video of the English version of that workshop; I spoke for the first 20 minutes or so. We also did the workshop in French; the video of the French session is here.

Videos in both English and French from the conference may be viewed here. There are lots of other resources on the Disability-Life-Dignity (Handicap-Vie-Dignite) website.

And here are some powerful related links:

hidden restraints: hidden abuse

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

four years later is too late for my mom. but it’s not for others.


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