When I FaceTimed with my mom on January 5th—her 75th birthday—she was surprisingly “good.” I put that word in quotations marks because I’m uncomfortable with the moral judgment it seems to place on the natural course of her disease. Yet that’s the word that come to mind, and she was really, pretty good: she knew it was her birthday, she said she was 75, and she asked me (un-prompted), “What’s Matt doing?” The question meant that she not only knew who I was, but also remembered who I was married to. Conversation seemed pleasurable but tiring: by the time I summoned the kids to the screen to wish her a “Happy birthday,” she resorted to echolalia, wishing them “Happy Birthday” back, even though it wasn’t their birthday. She was cheerful and smiley. She seemed to be enjoying herself and the attention, not to mention the chocolate cake.
In our Face-Time encounter today, two weeks later, things weren’t so good. My sister reported last week that Mom had started exhibiting a strange symptom of straining to get words out, as if she had to wrench them out of her throat. I didn’t need to hear the guttural straining to know what my sister meant. I saw an early stage of the symptom in an expression that began appearing on Mom’s face last summer. A shadow would rise up on her face, lifting her eyebrows and wrinkling her forehead in a paralyzed anguish (you can see it happening in the photo on the left). “What does that expression on your face mean, Mom?” I asked, describing and mimicking it for her. She said she knew her face was doing that, but didn’t seem to know why. It was as her face was expressing things that her brain could no longer comprehend or control. Was it anxiety? Pain? Or just a neurological reflex?
Now the facial expression coordinates with speech, or rather, with the anguished effort to produce speech. She strains as if she has tear the words out of her body. Often words won’t come, or when they do, they stop mid-sentence. If you question her about the end of her sentence, or try to suggest a destination, she’s already forgotten it. In these moments, the effort to make conversation is futile, no matter how much we both want it to happen.
Our fragmented conversation reminds me of a fragmented scene in T. S. Eliot’s, The Waste Land, in which two lovers are bound in a fraught, intimate exchange. The first speaker desperately pleads for conversation, and the other lover refuses:
“Speak to me. Why do you never speak. Speak.“What are you thinking of? What thinking? What?“I never know what you are thinking. Think.”
I think we are in rats’ alleyWhere the dead men lost their bones.
When I tried to talk to my Mom today, I felt as if I was silently urging her, “Speak to me. Speak. Speak.” It seemed as if her own mind was urging the same thing, pressing her to “Speak” and “Think.” And her own mind—or some other part of it—was as recalcitrant in refusing to cooperate as the lover in Eliot’s poem. Her mind had become a rat’s alley, and no matter how much she pressed it to speak, it would not give.
But maybe it’s not so bad for her. Psychologist Alan Dienstag, who conducts support groups for early Alzheimer’s patients, offers a reassuring perspective on the disease. Although Alzheimer’s is the disease Americans fear most, he says, it’s actually not the worst way to go, at least not for the patient. He tells this story about a workshop he ran:
There were about 20 people in the room and we were…going around the circle and people with early Alzheimer’s were talking about their lives and what they do to…give their lives meaning, find stimulating things to do, and so on. This man started talking about his experience as somebody with early Alzheimer’s, and he was painting a very…benign picture of it all. He said, “Well, you know, it’s difficult not to be able to remember, but I get up and I can do this and I can do that.” Basically he was just saying he’s fine, he’s OK. And over his shoulder, sitting behind him, was his wife. And she was crying…And I knew just how much he’d lost, how much she had lost.
…But there he was. He wasn’t uncomfortable. He really wasn’t. And so I think we project our feelings onto them, and we assume that they are suffering some terrible thing, but in fact that’s not necessarily the experience of it.
Listening to Dr. Dienstag’s interview helped me accept my Mom’s diagnosis: it was comforting to think that she wouldn’t suffer great pain—that for her, the worst was over. But now I’m not so sure. As I watch her on the screen, straining to extricate words, the effort appears agonizing. Maybe it isn’t physical pain. Maybe it’s emotional. Whatever it is, I can’t stand to see that look on her face and hear the words torn from her throat and shredded in the process. I feel like I’m not just witnessing pain, but actually inflicting it. By asking her questions and telling her about our lives, I’m putting her in a situation where she is compelled to speak, but cannot.
Our relationship has always been based on talking. Mom started reading aloud to my older sister and me well before I could understand the words. We spent the hot, humid summer days sitting in the living room in front of the fan as she read and read. When I was older, she would drive me places and tell stories about people’s lives and relationships—about marriage break ups, nervous breakdowns, jealousies and rivalries I was too young to understand but still fascinated by. I would ask questions, and she would always answer. Conversation became the fabric of our relationship.
So when she sees me, she knows, instinctively, that conversation should happen. And she can no longer make it happen. I can chatter on to fill the silence, but I’m not alleviating the pain that comes from the absence of reciprocation. Whose pain is it? Am I projecting my pain onto her, assuming she is “suffering some terrible thing,” as Dr. Dienstag says, when her experience is different? Her expression tells me I’m not projecting pain, though I’m probably mirroring it.
A few months ago, seeing her face on the screen gave me a sense of emotional connection, even when words faltered. But today, the effort of speech is too painful. I want to shut down the screen, to sit next to her and hold her hand, so that she won’t see me and feel like she has to speak.
Thinking about the effort of speech made me think of Muriel Rukeyser’s poem, “The Effort at Speech Between Two People.” So I looked it up, and in one of those uncanny acts of grace, the poem handed me the very guidance I was looking for. Its recurrent refrain is:
: Speak to me. Take my hand. What are you now?
In juxtaposing these phrases, the poem suggests that speaking to someone is analogous to taking that person’s hand. Both are reciprocal gestures of contact and communication. The poem also delivers a lesson I thought I’d already learned: we are always changing in relation to one another. So as my Mom and I continue to change (she on a more rapid course than I), I’m going to have to let go of speech and take her hand. That gesture may be my only answer to the question, “What are you now?” For now, anyway.
Thank you for speaking. Hugs. You are loved.
I wish I had read this when my father’s dementia progressed to the point that our conversations seemed to cause him more distress than enjoyment. It’s just so very hard to take the hand of someone who is geographically distant.
This is such a beautiful and heart-wrenching account of what you are experiencing. Wishing you all peace.
Suzanne, this is so poignant and beautiful. Thank you, and to echo KM: you are loved.
Yes, indeed. We’re with you. Love —