“Why did you do that? Why did you do that?”
The words, equal parts outrage and despair, came from the tall gentleman who wore a hat more commonly seen in the Australian outback than Virginia. He looked like a man ready to feed livestock, clear brush, chop wood, a man who embraced the rigor of independent living that kept him fit and erect despite his seventy odd years. I glanced back as his caregiver, solid as a steer, spread her arms wide and blocked his escape route until the gray steel door locked behind her. As I led my sister Deborah down the hallway to her bedroom in Wellspring, the memory care unit that had been her home for the past three years, my heart ached for the man. For my sister. For all the people whose lives had been stolen by dementia.
“I hope you realize I can’t possibly live here,” my sister had said four years ago when my brother Richard and I took her to look at assisted living facilities near her house in Beverly Hills. “Everyone here is at least 20 years older than I am.”
She knew she wasn’t herself, but didn’t realize–would never realize–just how sick she was. Frontotemporal degeneration prevented her from understanding the reality of her deteriorating brain.
Later that day when we visited a second facility near the Hollywood Bowl, a life-size cardboard cutout of Barack Obama stood by the fireplace of the living room. A good omen since my sister spoke of Obama with great admiration.
As the handsome young sales director showed us around, he spoke highly of the facility’s convenient transportation options and cultural outings as well as the many learning opportunities available to their residents.
“This place has a lot to offer, don’t you think?” I said to my sister.
“Please don’t make me go here,” she answered.
Her childlike plea, the antithesis of the response she would have made when her brain was still intact, was one more heartbreak I had to soldier through. Tears could come later, when I was too tired to do anything other than cry in the dark for the sister I’d lost. Now I had to find a refuge for Deborah, a place where she would be comfortable and safe during her brain’s slow death.
When the facility in Hollywood said the only way they could deal with Deborah’s wandering was to put her in the memory care section–my youthful, fifty-eight year old sister locked up with people in wheelchairs whose heads listed to the side–I took her back to Vermont with me instead.
Deborah’s new home was Woodstock Terrace, an independent living facility as upscale and gracious as its location, a New England village that the Rockefellers had adopted and protected since the century before. This facility would be small enough for staff to keep tabs on my active sister whose judgement was rapidly decreasing. They would make certain she wouldn’t wander down roads in the dark.
Taking her to Woodstock felt like a betrayal of trust. “You’ll only be here for a little while,” I said, setting her computer on a smaller version of the round table she used as a desk in California. Deborah immediately sat and played spider solitaire as I hung her clothes and arranged all the photographs and mementos I had squeezed into her suitcases. She was still playing when I finished.
“I’ll come as soon as school is over tomorrow,” I said, leaning down to kiss her good-bye. “We can have dinner together.”
“Okay. See you then. And thanks again for everything you’re doing for your poor demented sister,” Deborah said, never taking her eyes away from the screen.
She called me a dozen times a day from her apartment. Far from berating, she’d taken to calling me Mom–not in front of our real mother, of course–because I was taking such good care of her. She phoned to share memories attached to the photographs scattered around her apartment, or to say she really should get on with her job hunting in California. Sometimes she’d remind me she was the youngest person living there, by twenty years or more, but this mildly spoken complaint would always be followed by a lively description of the birthday party given for a ninety-two-year-old man the night before.
She described the party to me for months. In my sister’s mind, though, it had always happened the night before.
So when I listened to the caregiver distract the tall gentleman, this newest Wellspring resident who wanted to go home, I was grateful for the unexpected gift hidden in the carnage of my sister’s life: the move from an elegant canyon house into an apartment overlooking a tiny courtyard took place with hardly a murmur of protest.