Within 10 minutes of sending out the newsletter last Sunday, I got a reply from a reader in the UK. Her beloved had succumbed to the disease after several years.

My stepmom died a couple hours after that, exactly a week after her 61st birthday.

I’ve lost seven people in the last 36 months. I hate the word “lost.” It implies that if I’d just concentrate, I could find them. If only I hadn’t carelessly misplaced them like a library book, they’d resume their regularly scheduled appearances in my life.

“Involuntary separation” feels more accurate.

It covers both death and the long process we go through as family members. Watching, witnessing a loved one experiencing disease progression.

I know of nothing more painful than involuntary separation. The sting of not being able to pick up the phone to chat? Does it ever stop stinging? And that feeling of being robbed of the beloved other who gets the inside joke. Does that feeling ever go away?

What of the one who reads our face with fluency? How do we ever get over the loss of that? The loss of being seen, of being known?

We’re socialized to think it’s the grand gestures and big life events that are important. It’s the marriage proposal via Jumbotron–that’s the big deal. A dozen long-stem roses on Valentine’s Day, delivered at work? Never to be forgotten! The two-week vacation to Hawaii? It’s the cherry atop the dream home in the perfect neighborhood.

All that’s good stuff. But is it the house itself, or the moments that happen there? The moments that happen with the people in the house? That feeling of being in a moment together, of being loved, of being understood, of being accepted?

Those are the moments, the feelings, that jump out later, after. They’re the life preserver in a roiling sea of grief.

Those moments are small, which make them easy to miss. They’re created against a backdrop of anticipatory grief, of impending involuntary separation. So often, they’re often tagged as meaningless, as an exercise in futility. We’re talking about dementia, after all, say people who don’t have a clue.

I’ve howled in frustration at the dismissive attitude about the late stage of the disease process. He’s just a shell now. She’s not really there anymore. As though he’d turned into a turtle, or she’d learned to project a hologram as she transports through time and space.

I’ve tried to convey the importance, the privilege of just being there. I want to make sure families know people living with dementia feel your love all the way through til their very last breath.

Jen Palmieri, writing about her 58 year-old sister who just died of Alzheimer’s disease, says it better than I ever could:

I saw her refined — not reduced but refined — to her most essential self, a person full of grace and love. Of all the moments in my life I had with my big sister, the ones with the most value, the most intimacy, the most joy, were the ones I spent simply holding her hand in her hospice room. No distractions, no expectations or pressures, a time to simply be present, to simply be sisters.

Not reduced, but refined. I know of nothing more soothing.


Christy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.