This photo was taken in October 2013, the last time I saw my mother. She looks just like herself, doesn’t she? That’s because I had just washed and styled her hair for her. (Although Dad had been reminding her to take showers, I’m not sure if or with what she’d been washing her hair.) I also picked out her outfit and helped her put it on in the right order. (She’d put on the wool cardigan without a blouse under it.)
I look like myself, too, if a bit red-nosed and puffy eyed. You see, I’d been crying. We’d just taken Mom on a tour of the assisted living wing, “The Hearth,” where she would be moving next week. I had willed myself to be strong and cheerful, but as soon as I walked through the door the tears brimmed up and over and would not stop. I wasn’t upset by my immediate surroundings. Rather, I was crying backwards, for my godmother Millie who died of Alzheimer’s in 2007, and forward, for my mother, whose Alzheimer’s guaranteed her the same fate.
The last time I visited Millie, she was in the assisted living wing of Whitney Center, sitting vacantly in a wheelchair. I had expected that she wouldn’t recognize me, but I thought she would still greet me with a jaunty, “Oh, hello!” Instead, she was utterly absent. Here, physically, was Millie. Yet she was gone.
At the time of this photo, Mom wasn’t gone yet. She still had her sweet, cheerful, anxiously do-gooding personality. She still recognized me. Speaking coherent sentences was difficult, as was comprehending anything but simple, concrete sentences. But she could still apprehend and communicate feelings: though her facts were often wrong, the emotions were true. Given how disoriented she was in time and space, however, I wasn’t sure she understood that she’d be moving to the Hearth—permanently and without Dad. But she knew that something was up, and she had mixed feelings about it. “I just want to make sure I can leave if I don’t like it,” she said in a jarring moment of clarity. “You’ll like it, Mom,” I replied evasively, more hopeful than confident, “You won’t be lonely here, and you and Dad can enjoy each other’s company again, without so much stress.”
Entering the Hearth with Mom felt like the first step in letting her go. Now, two months later, I feel like I’ve lost her because her new home has terrible cell phone reception and no WiFi. Cell phone service no longer matters: we’re past the point where we can communicate meaningfully by phone. But sitting face to face via Skype, I feel like I can still connect with Mom. No matter how garbled the words, we can still see each other’s expressions, gestures, and emotions. This will change, of course. The last time I Skyped with her, Mom told me I looked different. Meaning: I don’t look familiar to her. Meaning: soon she won’t recognize me.
“Gone” is the language we use to describe the effects of Alzheimer’s. After a bad patch, when Mom didn’t recognize Dad—thought he was the gardener, though we never had a gardener—he cried and said, “she’s really gone.” Then, on an another day, “she was almost like herself again.” But the following day, she chose to stay and finish watching a movie with her new companions, rather than joining him for their ritual glass of sherry. Was she turning down an invitation from her husband of 50 years, or from a strange man who, in that moment, she did not recognize? And if she didn’t recognize him, was it Mom who turned down the invitation, or someone else? Was Mom “gone” again? Will she reappear? When will she resurface for the last time?
These unanswerable questions suggest the inadequacy of our language, both for dealing with Alzheimer’s and for embracing the complexity of selfhood. Alzheimer’s is a disease that, in attacking the brain rather than the body, destroys what we think of as the essence of the self. How much of ourselves resides in memories of our life experiences and in our ability to recognize the people we love? If I can’t remember my life, my lover, or even my own name, am I still myself? If I’m “gone,” but my body still breathes, eats, and sleeps, who has that body become?
This fear of losing the self rests on a false understanding of selfhood as something bounded and constant, rather than permeable and changing. David Hilfiker, who writes a blog reflecting on his own Alzheimer’s, draws attention to this common misunderstanding of selfhood in Western culture:
Buddhist teachings remind us that there is no constant “self.” (See my “Letting Go of Self.”) The Western idea that our self stays the same throughout our life just isn’t very accurate. In fact, our self changes continuously and dramatically throughout our life. The Buddhist teachings point out that clinging to any particular self-image is sure to bring suffering because the self will not fit the desired image forever. Let it go!
We change throughout our lives, in mind and body. Twenty years ago, I was not a mother or a professor, now I am both, and someday I will stop being a professor, but keep being a mother. My fear of heights has gotten worse, and my fear of embarrassing myself has lessened, though I’ve had plenty of practice with both. And I used to love chocolate, but hate wine and coffee; now, fortunately, I love them all. Have I mentioned my grey hair?
We are always changing, and Alzheimer’s accelerates the rate of change, rendering it more palpable and volatile. Other degenerative diseases have similar effects, diminishing the capacity of the body rather than of the mind. When a person with ALS wakes up one day and can’t move his arms or legs, we don’t say, “he’s gone.” So when my Mom wakes up one day and can’t recognize me, I won’t say, “she’s gone.” I will know she’s changed, and so have I.
But the immeasurable ways in which we have changed each other—molded each other’s selves through the impressions (including the bumps and bruises) we’ve left upon each other along the way—cannot be undone. I like to think that, even when she can no longer recognize me, Mom is still carrying me with her, if only in her muscle memory. And I’ll carry her with me for as for as long as I can remember her and as long as my heart beats.