Navigating Heartbreak: The Loss in Dementia

Originally Published, November 18, 2023

My mom's dementia is a complex and challenging journey, not just for her, but also for all of us who love and care about her. Among the many faces of this progress condition, one of the most poignant and heartwrenching aspects of all is our collective experience of loss. Loss in dementia is so multi-faceted, and we are ongoingly witness to it, we experience it, and want to acknowledge it. There is an emotional, heart-rendering toll that changes all of us.

1. The Gradual Farewell: Dementia is often referred to as the "long goodbye". Unlike sudden losses, dementia becomes a gradual and relentless process of saying goodbye to my mom and the mom she once was - over and over again. Her memories continually fade, her personality changes, and the essence of who she was, just slips away in front of my eyes. Every visit leaves me mourning the loss of the mom who once shared a life with me - with all of us.

2. Grieving the Living: This grieving in dementia is ambiguous and prolonged. Whereas typical bereavement comes with a loss marked by a distinct event. a death, and a date; one forever noted on the calendar. With dementia, I find myself mourning the living, caught in a continuous cycle of adjusting and readjusting to my mom's evolving condition and behaviour. Always wondering, who will my mom be today? Longing for the mom she once was. This ongoing grief is isolating and misunderstood. Most do not fully comprehend - nor do they want to - the emotional toll of this experience, watching a loved one disappear in slow motion. I feel as though I am experiencing the death of my mom - over and over again, as she slowly slips away.

3. Communication Breakdown: As my mom's dementia progresses, our communication becomes increasingly challenged. Conversations that were once a cornerstone of our relationship have dwindled. I am continually left with a yearning for the more meaningful connections we used to share. Conversations now make little sense. The words do not come, and the people no longer recognized. Conversations circle and repeat on the simple things. How she tells me she likes the colour of her sweater, for the fifth time. How the coffee is hot, or is it tea? This loss of shared conversation and the ability to communicate compounds our collective sense of isolation for both my mom with her dementia and all of us who love her.

4. Role Reversal and Shifting Dynamics: The dynamics within our family have shifted dramatically as my mom has become increasingly more dependent. I am now the caregiver, "the parent" and have become responsible for all the decisions and tasks to an extent I never anticipated. Role reversals - another layer of loss - the loss of familiar family roles and dynamics.

5. Loss of Independence: Dementia has robbed my mom of almost all independence, now requiring assistance with the basic daily tasks and most personal care. Her needs progressively increasing, and more challenging. Bearing witness to this loss of ability to perform basic activities of daily living is heart-wrenching. The loss of independence is not only a practical challenge for my mom. it is also an emotional one. As my mom travels this place of the knowing and not knowing, she grapples with a diminishing sense of self, with no understanding of what is happening or why.

   
   

   I share this in the hopes of creating greater awareness and compassion for those with dementia and those who love them. I share this in the hopes that if you know someone who has dementia or is a caregiver - you will show up, hold space and take time to learn.

   Loss in dementia is a pervasive, ongoing journey that demands resilience, compassion, and support. It is crucial for caregivers and loved ones like me to acknowledge and address our own grief while also trying to provide comfort and understanding to those experiencing dementia.

   By fostering open communication, seeking support from dementia communities, and embracing the importance of self-care, we can all navigate the heartbreak of loss in dementia with empathy and strength.

   Together, let's strive to create a more compassionate and informed society that supports all of those affected by dementia at every stage of their journey.

   Resources:

   Alzheimer Society of Canada

   Dementia Solutions

   Dementia Care Blazers

   Making Happy Memories

   
   

   About the author:

   Karen Hendrickson is an Elevation Coach, focused on helping others to rewrite their life story, befriend their mortality, and find the richness and magic that lives at the intersection of our lives where life and death meet. When we allow our authentic self permission to shine our life becomes full of MAGIC and GREATNESS. Contact karenttjourney@gmail.com and start working with her today!