“Spirit!” said Scrooge. “Show me no more! Conduct me home. Why do you delight to torture me?”
I spent this Christmas without my mother, a woman who loved holiday traditions like decorating the tree, dedicating a day to roasting pork with cracklings, and heartily giving and receiving gifts. When I last saw her, at her deathbed, these joys were long gone. Mom had dementia, and though this person wore her face, she acted nothing like the mother I once knew. Even before she died, engaging with her felt like interacting with a ghost.
Not the kind of ghost that haunts a house, though. Instead, my mother made me think of Charles Dickens’ A Christmas Carol, which involves three spirits helping Ebenezer Scrooge see with a new perspective, sometimes through tough love and sometimes with benevolence. My mother’s behavior was similarly unsettling and inconsistent: one day she’d act inexplicably childlike, irate and annoyed, and another she’d be soft-spoken and kind. Though upset by these shifts, I wondered if—like Scrooge—there could be a way to reframe her dementia as a larger lesson.
[It was a] strange figure—like a child; yet not so like a child as like an old man, viewed through some supernatural medium …”
Dementia steals a person’s essence, the ability to speak or reason or participate in the activities of daily living. My mother, at the end, was largely nonverbal and spent most of her time wandering around the memory care ward. She’d completely lost the things that defined her life: the ability to loyally keep up with the news, to call her kids and hug her grandkids, to feed herself. More than a year before she died, she stopped saying “I love you,” a mundane phrase when regularly repeated, but something especially missed when absent.
I’m not the originator of the phrase that people with dementia “die twice.” It reflects how those of us left behind mourn twice for the people we’ve lost. When mom eventually lost the parts of her that made her familiar, it felt like she was gone. And yet, her body survived. Although people with dementia don’t die from the cognitive disability itself, it can affect their ability to perform basic, necessary actions to maintain life, like swallowing. Forgetting how to use the tongue can cause them to aspirate or stop eating entirely, which is a common way that dementia patients go. This is what I assumed would happen to my mother, in her second, physical death.
Instead, the culprit was a chronic condition that had plagued her for decades before she ever showed signs of dementia. It could have been controlled with a healthy diet in reasonable quantities, but her dementia led her to eat too fast, or eat the wrong thing and make herself sick. To watch this—and feel helpless to stop it—made me despondent. As her body stopped accepting food and water, it slowly shut down. She didn’t want artificial nutrition or hydration.
Surprisingly, on her deathbed, something of Mom’s vivacity returned. Still largely speechless, she suddenly reengaged with her surrounding family, making eye contact and smiling. It felt like a miracle, teasing us into thinking that, perhaps, she could get better now. In the moment, this version of my mother, this reversal, felt unfair, a tricksy ghost who faded quickly as soon as she moved into hospice. There, Mom curled into herself on the bed, unconscious, as comfortable as possible. We wrapped her in heated blankets. I stroked her hair. We held her hand. And she let go, body and soul, just after midnight on April 20 at the age of 74.
“Good Spirit,” he pursued, as down upon the ground he fell before it: “Your nature intercedes for me, and pities me. Assure me that I yet may change these shadows you have shown me, by an altered life!”
Then, sitting by her bedside as she died, I felt a fear that brought me closer to the sense that life—despite my relative youth—is fleeting. Losing her so completely humbled me to realize that I’d been experiencing the tasks of daily life as tiresomely dull. From swallowing food to driving my young son to school, I started to appreciate these rote actions as small miracles of life. I knew I could be more present for myself and my family.
There is no replacement for my mother at Christmastime, but losing her led to deep, transformative reflection. Because of her dementia and her passing, I’ve realized that I’m not so powerless. Rather, I’m the architect of my life—and I’ve rebuilt it to more closely experience the things that she lost, from building new friendships, deepening old ones, and saying “I love you” without pause to enjoying big, traditional meals like a Christmas pork and all the trimmings. Though I lost my mother, her ghost reminded me—someone who may have been a bit of a Scrooge—of the simplest pursuits.
Scrooge was better than his word. He did it all, and infinitely more….He became as good a friend, as good a master, and as good a man, as the good old city knew, or any other good old city, town, or borough, in the good old world. … His own heart laughed: and that was quite enough for him.
