Deborah, Mom, Courtney and Dale in York Beach, Maine. 2003
Hundreds of small Last Times in my life have passed unnoticed: The last time my daughter called me Mommy, or my son held my hand; the last time I rode Martha, my first horse, or saw Judy, my first best friend.
Some Last Times are so big that I bury them deep in my memory. They manage to escape, though, when I wake in the middle of the night. Giving my father a hug good-bye two weeks before an aneurism took him away forever. Standing on the deck of the house Charlie and I built a paycheck at a time. Gazing past gardens to the barn where our kids and horses once reigned. Crying because we were leaving the farm we’d loved.
The last time I spoke to my sister Deborah—the rightful Deborah—before mutating cells started a death march through her brain.
She was diagnosed with frontotemporal dementia (FTD) in 2008, but it had probably begun its stealthy take-over in 2006 when a peer noticed her performance at work was less stellar than it had once been. When details and dates started slipping her mind. When exercise and mindful living didn’t banish bouts of mild depression anymore. I’ve combed through my sister’s journals and emails from the past decade looking for changes in her thinking, for evidence that she might have sensed something was wrong early on.
I’ve found nothing.
People ask how long Deborah had FTD, and I don’t know what to tell them. Did she have it in 2005 when I helped Courtney move to California? When my sister turned in front of another car that week and scared us half to death? I had figured she was still a bad driver and took over the wheel. When she left her precious dog Satchmo tied to the railing on the sidewalk in front of a restaurant while she disappeared inside, or let him jump on strangers, begging for attention? I thought she was just being a clueless dog owner. It never occurred to me that something in her brain might have started to affect her judgment.
In 2004 when Deborah took me to Disneyland, I didn’t think anything was amiss when we were delayed at the gate because her executive pass had expired. Certainly the error wasn’t my ultra-organized sister’s doing. When Deborah cried as we watched Courtney performing in Disney’s All American College Band, I didn’t worry, not even when she choked up again during our ride through “It’s a Small World After All.” After all, I cried more easily as I got older, too—though usually over books or movies. Looking back, I wonder if Deborah’s frontal lobes—the parts of her brain responsible for emotions—were already under attack.
In 2003 during a family vacation, Deborah floored me with her suggestion that Charlie and I move to California when we retired from teaching. “I could move to a new place and you could live in my guest house,” she said. Even as we considered her invitation, I marveled at the change in my independent sister who, in the past, loved family best in small doses.
I had assumed Deborah was softening with age, her priorities shifting as the countdown to social security drew near. I even wondered if our relationship—which had grown from childhood indifference to love and respect—might be evolving into a friendship in its own right.
I’ll never know when FTD started chipping away at the very essence of my sister. I’ll never know when Deborah stopped being Deborah.
I just know that I never got to say good-bye.