Alzheimer's blog

Learning to walk through the darkness of dementia

By Angela Lunde April 3, 2015

It was incredibly heartwarming to be with family at the annual Meeting of the Minds Dementia Conference in St. Paul a few weeks ago. I don't mean family as defined by a blood relation; I'm talking about family defined by shared experiences. That shared experience is either living with dementia or being a caregiver.

Rosalie and Tom have each been in a caregiving role for their spouses for more than 5 years. They came to be with others and to courageously share their story. Like all caregivers, their stories are unique and their experiences vary. But the shared time together became less about the differences and more about what binds this family.

What many in the dementia family share is burden and pain. Yet, one of the greatest causes of personal suffering is the belief that you're alone in your struggles.

When Rosalie and Tom shared their stories, they didn't speak about being strong or trying to get through it. Rather, they talked about living life fully in it — feeling the pain, sitting alongside the grief, making room for acceptance and yet acknowledging a certain kind of respite in brief moments of denial. They spoke candidly about the intruder (dementia) that had hijacked their marriages and expectations for the future.

I believe strongly in the need to explore your own pain and grief. Painful feelings are most excessive and debilitating when left unattended. For those in the dementia family, sharing stories and time with one another normalizes your painful experiences. You realize you aren't alone. It give you ease to hear someone else say authentically, "I understand your pain."

When you suffer with others, your emotional wounds heal faster and you gain a renewed and vital connection to others. To have a relationship with suffering is also to have a relationship with compassion for yourself and others. In this way, suffering can transform into something life-giving.

Please share your story with others on the blog.

"Only when we are brave enough to explore the darkness will we discover the infinite power of our light."
— Brene Brown

April 03, 2015