A caregiver fights Alzheimer’s disease with empathy and little white lies
The third time this morning that Eloise asks about Barbara, I tell her a new lie. The old lie, that Barbara is at work and can’t be reached right now, is not working. So I tell Eloise that I’m going to go out to the front desk and call Barbara. I walk out of the room and stand by the threshold of the door, just out of view. Then, as I count slowly to 60, I think about what to do next.
“Okay,” I tell Eloise when I come back in. “I just called Barbara.” I watch her face change from tense to tranquil, as if someone had flipped a switch. She unhunches her bony shoulders. I hear her take a deep breath. “Barbara is out of town,” I tell her. “But I talked to Tom.”
“Oh yes, Tom,” Eloise says. She remembers her son-in-law. This makes the call real for her.
“Tom says that Barbara is out of town at a conference,” I tell Eloise, making it up as I go along. “She’ll be gone for a few days but she promises to come see you the moment she gets home.” Eloise understands that her daughter works, that she has a career. She knows about out-of-town conferences. She is satisfied.
“You are so good to me,” she says. I wonder.
But I don’t have much time to ponder personal ethics this morning. Anxiety is in the air. I think sometimes that mood is contagious, that residents spread nervousness and unease among each other like sniffles. Whatever the etiology, Eloise is not the only one who’s jittery today. Marianne, generally calm and composed, needs my attention. She is pacing, dressed in her usual professional woman clothes, carrying her handbag.
“Have you seen Frank?” she asks me. I don’t remember who Frank is to Marianne, but that doesn’t matter right now.
“No, I’m afraid I haven’t seen him,” I say. “But you know, I don’t get out of this section of the building very much, Marianne.” Section of the building. That’s part of the code I use when I talk to Marianne. It allows us to talk about this place without using words that identify it for what it really is.
“Well,” Marianne says. “I don’t know what his schedule is, but I assume we’re dining together.” I nod pleasantly. “When he arrives, please direct him to my office.”
Marianne is always so confident in her delusions, so articulate, so precise that it sometimes makes me doubt my version of reality. Maybe there is a downstairs here. Maybe her room is her office. Maybe she does work here. Maybe Frank, whoever he is, is waiting to take her to lunch.
The noon meal has arrived by cart, and I start lifting the domed covers from the plastic dinner plates. Underneath, the food is, mysteriously, always room temperature, regardless of what it is and when it left the kitchen. As I distribute the plates, I try to persuade Marianne that she should sit down at the table with everyone else. Perhaps Frank meant that you were to meet after lunch, I suggest. Perhaps he wants to get together for coffee. She considers this.
“That may be so,” she says. Her voice trails off. I can’t help getting the feeling that Marianne is losing faith in this Frank scenario. If so, this calls my role into question. If Marianne, in a moment of clarity, has realized that Frank isn’t coming to pick her up, if she has suddenly remembered that Frank in fact died a while ago (I checked Marianne’s file: Frank was her husband, and he has been dead since the late ’90s), then she might look at me and wonder: Who is this woman pretending that Frank might show up after lunch? I become the crazy one.
Marianne eats quickly. She has so much to do, she tells me. She has to get home and take care of things, she says. She wants to leave me a note with names on it, her “contacts.” I find her a piece of paper. She walks off with it, returning a few minutes later to ask if Frank has called, if he’s left a message. She’s agitated, but not in that needy way Eloise is when she’s agitated. Marianne is more like a harried executive with too much on her plate and too little confidence in her subordinates, of which, I believe, she considers me one. I tell her there is no phone in here, but I will check at the main desk to see if any messages came in. It’s exhausting playing along with these scenarios.
Some days I lie so much that I forget my own lies.
The next day, Marianne is agitated again. The first thing she says when she sees me is that she is expecting a phone call.
“I don’t know from whom, and I don’t know when,” she says, which, I can see by the way she raises her eyebrow, sounds strange even to her. She wants to make sure the call comes through. She wants me to alert the front desk. I tell her that I will. Sometimes I am concerned that feeding her delusions may ultimately be harmful; other times I feel certain that, for Marianne, living in a fantasy world is a protection, a solace, and I cannot destroy that.
These days I think more and more about alternative realities, about the different worlds inhabited by the people I care for. I have long understood that reality is subjective, that, for example, the mother-child conversation I experience as well-meaning and inspirational can be to my teenage son invasive and embarrassing. But at least we both agree we were in the car together that afternoon, that it was raining hard, that we were a mother and a son on an errand. We experienced the moment differently, but not so differently, not Marianne-differently.
When I allow myself to accept these other realities—Marianne’s I’m-an-administrator-here vision of her life—or when I myself create other realities—the ongoing fiction of phoning Eloise’s daughter—I begin to experience a shift away from disease, disability, and dementia, and toward “personhood,” a concept I read about in Dementia Reconsidered. Tom Kitwood, the geriatric psychologist who wrote the book in the late ’90s, believes simply and powerfully that “the person comes first,” that attention to personhood rather than pathology could, and should, revolutionize Alzheimer’s care. The book has had a major impact on Alzheimer’s care in Great Britain but not, it seems, in the United States. Kitwood’s idea helps me look at Marianne or Eloise or Hayes, or any of the others, as interesting people, not as—or at least not only as—victims of an illness. It’s not that I forget they have Alzheimer’s. It’s that the disease now does not define them. They are who they are and they have Alzheimer’s.
This doesn’t seem like a lesson I—or anyone else—would still need to learn. The disability rights folks have been telling us this for decades: I am a person with a disability. I am not a disability. I am not Jane Jones, the paraplegic. I am Jane Jones, and my legs are paralyzed. It’s not a matter of politically correct speech. It’s not semantics. It is a different way of looking at people.
The next morning cantankerous Frances M. is in a helping mood, which means I have to keep my eye on her all the time. When I disappear for a moment to take Pam into her room to use the commode, I return to find Frances M. wheeling Addie away from the breakfast table, only Addie is not ready to go. Her plate is full of food. She is grasping a triangle of toast in her hand. I smile, pat Frances M. on the back, and thank her extravagantly (maintaining her good mood is a priority) and wheel Addie back to the table.
When I look over my shoulder may-be a few minutes later, Frances M. is helping Hayes eat. She is feeding him hot cereal with a fork. The Cream of Wheat is dribbling between the tines onto his clean blue sweater and making its way in sluggish white rivulets down his front. I am about to rush over to shoo Frances M. away—I mean redirect her, as we say in the biz—when I realize something else is going on: Frances M. and Hayes are talking. The conversation goes like this:
Hayes: Help me. Are you helping me?
Frances M.: Oh yes. This is right. I’m ready now.
Hayes: My back is itchy. It is so itchy.
Frances M.: Deanne will be late for school. I have to do something.
Hayes: I’m Hayes. Hayes Bottoms. Everyone has a bottom.
It makes no sense if you pay attention to the words. But if you listen instead to the tone and the voice patterns, if you look at the body language, it seems very much like a conversation. He asks. She answers. He comments. She comments. They take turns. They look at each other. Clearly they are connecting.
We are so focused on words, Kitwood says, that we have forgotten how to communicate without them. More than that, we think there is no communication without words, which means that we believe we can’t communicate with those who, in the later throes of Alzheimer’s, have lost most of their language.
These sentences Hayes and Frances M. say to each other may not make sense as conversation, but there is meaning here. Frances M. stops fidgeting. Hayes stops calling for help. They are getting something out of this moment.
I go over and give Frances M. a hug. She is not ordinarily very huggable. “You’re having such a good day today,” I tell her.
“I’m a human being today,” she says.
After losing her mother to Alzheimer’s disease, Oregon writer Lauren Kessler went to work as a caregiver at an Alzheimer’s facility, seeking a better understanding of the disease. Her experiences are the subject of Dancing with Rose: Finding Life in the Land of Alzheimer’s (Viking, 2007), from which this excerpt is drawn. Reprinted by arrangement with Viking, a member of the Penguin Group (USA) Inc. A version of this excerpt previously appeared in Oregon Quarterly (Autumn 2007).