Finding Meaning: Dementia & The Family Caregiver Story Project | “Nadia and her Mama”

Written by jddeir1
Home » Finding Meaning: Dementia & The Family Caregiver Story Project | “Nadia and her Mama”

When I accepted a promotion in 2017 to my role as Digital Health Specialist in Sinai Health’s Reitman Centre for Dementia Support/ Provincial Enhancing Care for Dementia Care Partners Program (EC Program), a full-circle had connected in my off-the-beaten-trail professional path that forged for over 20 years. It connected my unforseen joining of the L’Arche Daybreak community as a live-in caregiver, when I was a 24 year-old post-grad filmmaker and budding short story writer; it linked through my growth as a professional award winning documentary filmmaker; then through my post-grad residency training in Interactive Design at the Canadian Film Centre’s Media Lab; through my experience in interactive design and digital content production; and finally intersecting my re-union in healthcare and communications with my landing at Mount Sinai Hospital, Sinai Health‘s Communications Department as Digital Communications Specialist. It connected my intensive and exceptional training and experience as a caregiver for the developmentally disabled at L’Arche, it connected the visionary and ground breaking “spirit portrait” documentaries I had created in my time at L’Arche*, and it later ported to my exceptional care experience for my elderly parents, and my mother who had lived with degenerative impacts of Parkinson’s Disease.

Roots of the Project Vision

The Finding Meaning: Dementia & The Family Caregiver Story Project is a “from the roots up” creative vision, a short-video project that I birthed with my former colleagues at the Reitman Centre/ Enhancing Care Program, and most specifically my amazing colleague Aynsley Moorhouse, and the incredible Dr. Joel Sadavoy, Medical Director of the Reitman Centre/ Enhancing Care Program and founder of Geriatric Psychiatry at Mount Sinai Hospital. It was rooted in the fibre’s of Aynsley’s professional role as a Mental Health Clinician for family caregivers of a person living with dementia, her training and background in the fine arts of theatre, and her journey with her departed father, a physician who had lived with Alzheimer’s disease. On my side, it was rooted in the full-circle journey noted above, and in the profound and deeply rooted life education and life wisdoms I had earned through my exceptional caregiving roles over these years. It was rooted in the many unique ways I have creatively communicated these wisdoms through story, and in my deep understanding of the fog that society continues to stumble through, in understanding the rich, complex and critical importance that the caregiving experience and caregiving relationships hold for us, as cornerstones for the “quality of life” and meaning of life, that we all deeply yearn for.

The Guiding Vision

As we describe the project on the DementiaCarers.ca website where we are publishing these creative works of the heart, the Finding Meaning: Dementia Caregiver Stories Project reveals “…caregivers’ stories told through their voice, presenting the often-hidden picture where meaning, connection and growth in the journey of caring for a person living with dementia, are possible.”

In the midst of the pandemic and the personal barriers of social distancing, we conducted our caregiver interviews and recordings via Zoom. But these were deeply personal, intense and almost sacred interviews. For me this project was as much about the journey as the destination, and upon completing the first in our series, I have taken to calling this project a therapeutic creative storytelling journey. “Nadia and her Mama” is our inaugural story. As we phrased it on DementiaCarers.ca, it is “…a 6-minute video of the powerful caregiving journey that Nadia lived with her mother. The video is a significant demonstration of the depth and power of the complex emotions encountered in the caregiving journey, with an affecting and poignant message of both struggle and hope. We present this video with our deepest gratitude to Nadia, for her generosity in sharing these powerful, beautiful and meaningful stories of her caregiving journey with her dear “Mama” and for her supportive desire to share these with others.” I also happily share it below.

As with all vision projects, they require support and if you’re interested in supporting us in any way, be it financial support to help us with the costs in producing more, or be it in other ways of contributing, including sharing your own story, please don’t hesitate to send me an email.