Where disease stopped, and she began: a family facing dementia

I remember my great-grandmother Athena standing tall, leaning against her red-brick porch, beckoning my brother and me to come inside at the little house on the little street in California.

Her home was built on easy summers — on all the possibilities of our make-believe. We memorized the slope of the driveway and the sound of cracking gravel under our feet. The taste of each blackberry warmed by the sun. 

Years later, as I grew and she shrank, my grandfather installed a handrail to help her reach the top steps. 

This week, we published a long-form investigative piece on an assisted-living home in Cottage Grove, Magnolia Gardens. This assisted-living home, like many others, struggled to retain staff throughout the Covid pandemic — and residents, family members and caregivers carried the weight of that challenge. 

As I was writing, researching, interviewing, combing reports, surveys and data, I kept returning to the memory of my great-grandmother, Athena. 

Like it does for so many of us, it started with a fall. And after a while, it gets harder and harder to get up. 

When I think about what became of her, that loving, open-armed woman, I sometimes feel sick, as if some monster that feeds on memory has shredded and devoured her. But in reality there’s nothing awful or even particularly tragic about the woman who sat happily beside me on our little blue couch. She was aging, shriveling, shrinking, but she still smiled her own smile, the one I knew, and when it overtook her face, the present collapsed into the past. She became that smile. It contained all she was and is.

The distance between who she was before dementia and who she is was a rift only my family perceived. She didn’t appear to sense it at all. Some things didn’t connect: she’d say things like “I’ve always loved ice cream,” even though, if asked, she couldn’t name her favorite flavor. She only knew her own delight, and it came to her free from the past.

My great-grandmother didn’t know what day it was, or what she did a minute ago, or even the names of the few friends who called or stopped by to visit. She got angry at the trees for dropping their leaves in autumn and couldn’t remember what she liked in her coffee. Dementia had wiped out most of her past, leaving behind a sliver of personality that existed in a perpetual, baffling present.

The confusion that sometimes unsettled her early in her mental decline didn’t trouble her anymore. Even existential dread was beyond her. 

She told me once, with a lazy wave, ushering me out of the dining room at her assisted living home, “I’m done. I’m ready.” 

The loss of memory is an awful prospect. But memory is, at best, a mixed blessing. It’s a source of pain as often as pleasure, the place where grief and loss reside. Grudges live there, and so do shame and regret. No memory meant no grieving.

Yet, for those of us around her — my grandmother who moved in to care for her, my grandfather who cooked for her, my mother who kept the bills paid, my brother who took her trash cans to the curb, my father who moved her furniture into the home — grief was tangible. 

All the while she sat, smiling, on our little blue couch. 

There was some unbeautiful mystery in the place she dwelled, something bad was unknowable to me, unnameable to her. The darkness was something shared between us, all of us, as thick and elemental as our blood.

This story isn’t a unique one. The only thing unique about it is that it’s mine. It’s ours. It’s my family’s.  

Take out the silence, the wildfire in her eyes, the house full of clocks needing to be wound and the school bells ringing off key, and you get the long view. 

Magnolia Gardens’ and my family’s experience share the same moral — according to her, I think. Sometimes, a story asks the hearer to be happy with what they have and not let the road carry their mind further than their feet can travel. It’s hard to grieve a memory while a new one forms. The pain is built in — words try to blot up death, but it leaks faster than language can soak. 

That doesn’t mean we shouldn’t try.   

Ryleigh Athena Norgrove is a reporter for The Chronicle.