It's April, and light sparkles in the leaves of my mother's old magnolia tree. I pull my rented white Ford Fiesta over to the curb, yank the hand brake, and sit gazing at the sun-drenched bungalow. For eight years, Mother lived here on the campus of the Christian Care Center in Dallas. Beside the two-bedroom house, the patch of soil where she once planted basil and thyme is now covered in roses.
I am revisiting the several houses where she lived and dropping in on the doctors' offices where we sat in waiting rooms together. I have eaten black-eyed peas with chili peppers. I have ordered grits to remind me of the tastes we shared. I have caught up with her friends at lunch, stopped by the greenhouses she frequented, and walked in the parks she loved.
Everywhere in Dallas, memories of my mother swim back. I see her turning the corner in her neighborhood grocery store, walking in her black flats down the ruby carpet in her church, stuffing a chicken with onions and loading it into her oven.
Now she is gesturing toward a brilliant pink peony on the lawn of the Christian Care Center. "Did you know a peony can live for 50 years?" she says. "This was dead in February, and look! Here it is again."
I get out of my rented Ford and walk over to the peony. It is blooming wildly. It has outlived my mother, who has been gone for years. I am thinking about how much she, a national flower show judge, loved perennials. I suspect that perennials reminded her of the Resurrection. It wouldn't be quite accurate to say that she had faith in the fact that there is life after death. I don't think the alternative ever occurred to her.
I touch the silky blossom of the peony, which shatters brightly on the grass.
According to the most recent statistics, more than five million Americans have Alzheimer's disease. One in three seniors dies with some kind of dementia, of which Alzheimer's is the most common. And more than 15 million of us care for parents, friends, or relatives with the disease. Alzheimer's, like cancer, is a word that electrifies our conversations with terror. It currently has no cure.
The disease can be terrible. My mother suffered from it. And there were years when taking care of her felt like a grim, dispiriting grind. Yet I think everyone in our family came away with what no one mentions in our Alzheimer's discussions: what I can call only gifts. Those gifts include a stronger bond with my mother and my sister, a truer sense of aging and death (realities our society mostly hides from us), a clearer understanding of my own past, and priceless spiritual disciplines, including prayer, patience, humor, hospitality—in other words, how to wait, and how to let go.
My mother died in January 2008, at the very bottom of winter. She had fallen, broken her hip. But her diminished ability to navigate was caused by Alzheimer's. It's fair to say that, though she cleverly avoided a diagnosis, she died of the disease. She was a nurse who pitted her cunning against every doctor she ever saw. More than anything, she wanted to escape a dementia diagnosis. My sister and I valiantly tried to secure one, believing that it might lead to more helpful medical intervention. But I often silently cheered for her as she outwitted her doctors.
After we lost her, I did what I always do when I can't quite grasp what has happened to me: I read books. They horrified me. They described such grim hopelessness, such utter and final despair, that as I read, my imagination kept falling off into disbelief. It was sort of like riding King, the black pony rented for me for two weeks almost every summer of my adolescence. For the first couple of days, without warning, King would take off toward the far field. Then he would abruptly stop. Riding bareback, I would fly over his arched neck and land on the ground in a bruised heap. That's how I felt, reading the Alzheimer's literature. The narratives of those books violently differed from my experience with my mother.
Shortly after that, I read an op-ed in The New York Times that argued that our discussion about Alzheimer's has become one-sided. What we tell one another about it is so appalling that some seniors are vowing to commit suicide if they are diagnosed, and their middle-aged children are fleeing from caretaking. Yes, I thought. Even those of us with faith have become
victims of our own terror.
I began to realize that I needed to write what I know about the Alzheimer's journey. The next day I applied for a grant to fly to Dallas and do research.
A Journey with a Destination
The word pilgrimage is less familiar to us than it was 100 years ago. It is less common in this country than it is in some Muslim countries. But pilgrimage implies a goal and an intentional journey toward that goal. Sometimes the goal is an actual church or site. Almost always the people going on a pilgrimage have not seen the site. They believe in it. They hope for it. But they are on a passage toward something that's not yet present and clear and obvious.
In fact, pilgrims often aim for something they can't locate on a map. One pilgrim might want to discover how to pray, for example. Another might long to learn how to be quiet. Yet another might have the goal of actively loving her neighbors.
A pilgrim needs faith to envision the goal, whether it is a literal or spiritual destination. A pilgrim needs to believe she might actually reach the goal. And since the pilgrim has never traveled that path, she learns—discovers as she goes—how to get there and exactly what her end will look like.
On a dark Dallas highway in the middle of a fall night, I finally realized our Alzheimer's years would be a pilgrimage.
But let me go back to the beginning of our journey. When my strong, practical mother began to forget phone numbers and then one evening reported that she forgot how to get home from the local dress shop, I was shaken. What was wrong? Was it her map-reading skills, which were always a little wobbly? Was it her eyesight? Was it that she needed to limit her driving to daytime?
I sent her a large print map. And soon after, I flew to Dallas to check on her, bearing her great-grandchild's drawings, artichoke dip, and tickets to the symphony.
Mother drove me around Dallas, as she always had. The gardens. The art museum. But she couldn't find her bank.
The next day I bought a map of Dallas for myself. I'd never needed one because my mother kept the scheme of its eastern suburbs in her head. That afternoon she and I, following the map, found her eye doctor's office. He prescribed new glasses—trifocals, which cost over $300. Then we drove to the place where she had always been fitted for glasses. She told me she thought she could find it again, if she needed to.
But a couple of weeks later, she told me on the phone that she couldn't find the trifocals. And she couldn't find the glasses place. My mother, who had taught us to save things, to keep what we were lucky enough to have.
It kept getting worse.
Because Alzheimer's and senior dementia have no clear, discernible beginning, and because the course and length of the disease vary with each person, the journey begins to feel not like a pilgrimage but like an endless, repetitive slog. Even with a diagnosis, there's no way to predict what's coming next.
Such ambiguity created practical difficulties for me: What will this cost? Will I need to fly to Dallas this week? Where is the best place for Mother to live?
More crucially, this vast uncertainty depleted my spirit. I felt confused and sometimes without purpose. How could I fix what was wrong? I didn't know much about medicine. Did we have the right doctors? What should I pray for?
With no clear sense of what was wrong with Mother, and with no end in sight, I felt colorless—bleached out, worn to a nubbin.
Not Mine to Make
Then one autumn I found myself on a Dallas expressway, driving from the airport after a flight to see my mother, and I realized that I was lost—not just off the map, but in a bigger way.
I had flown in after a day of teaching. The plane was delayed, arriving three hours late. I found myself madly crisscrossing expressways, exiting one, merging onto another—until I realized that I no longer knew where I was. Now almost 2 a.m., the lights of fast-food restaurants and gas stations had been turned off.
I had been driving at 70 mph for almost an hour by the time I figured out I was headed in the wrong direction. I didn't know how long I'd have the strength to keep driving, and I thought of pulling over and sleeping in the car.
The landscape was a rat's nest of expressways heading in every direction, fierce velocity and incoherent markers. I felt that I had very little control over what happened to me next. I grasped how precarious my existence was. I couldn't even predict whether I would be able to draw another breath. One of my close friends—a woman my age—had just suffered a stroke. My life, I understood, rested in God's hands. My own perception, fortunately, was not the boundary or limit of all knowledge. The final decision was not mine to make.
My shoulders relaxed. I stopped gripping the wheel. I felt simple and humble and grateful relief.
I had enough sense that night to get off at the next exit. I spotted a young man closing up a Wendy's. When I asked him how to find 635, he cheerfully turned the restaurant's lights on again and reeled off exact directions. I wrote them down and thanked him profusely. He might have been the archangel Gabriel, who had suddenly learned English.
I made it safely to mother's assisted living home before 3:30 that morning.
That night I started letting go of my obsession with fixing my mother. I became like Sally in the Peanuts comic strip. I kept experiencing rude awakenings during the next several years—realizations that I couldn't control everything. Over and over I grasped that whatever pilgrimage our family was on, I was not in charge of what the final destination would be or when we would get there.
I couldn't have said this at the time, but it was faith that allowed me to look forward and begin to define this seemingly random and endless period of caretaking as a pilgrimage. It was faith that made me believe I would find meaning in the heartbreaking need to buy Depends for our proud matriarch, to feed her as she had once fed me, and to help my sister make decisions about our mother's money and housing. It was faith that allowed me to enjoy some of the time I spent with my sister and mother. It was faith that allowed me, finally, to sometimes laugh.
Alzheimer's can be unsettling for both patients and caretakers because it is often isolating. On the one hand, patients need increasing physical care, but on the other, they seem not to "be there." They lapse into silence or say things that don't make sense.
One afternoon in September, I was sitting with my mother in the living room of the Christian Care Center. Her door to the hall was ajar, and smells drifted in from the dining room, where the third shift was eating. We sat in gloom because Mother's curtains were pulled against the blazing Dallas sun. She slumped, listlessly watching a newscaster on tv, the sound turned to a low murmur.
"I don't like his hair," she said.
"What don't you like about it?"
"It's dyed. Can't you tell?"
It didn't look dyed to me.
At this point, the caretaker often contradicts the patient. It leads to a quarrel and to the continuing isolation of both patient and caretaker. They both feel lonely.
But it doesn't have to be that way.
Five years earlier my mother had been a vibrant, popular woman. Now she was almost confined to her small apartment. She could no longer drive. She'd forgotten about flower arranging and given up her Bible study group.
I peeked at my watch. It was only 12:30. Five hours to dinner. I grabbed a magazine and leafed through it. It was full of ads for absorbent towels and magic face creams. I put it down. I got up to straighten a rug. My mind flitted to what was happening with my classes and my family on the East Coast. Then I tried to stop thinking. What could I do about any of it while I was here? Part of the problem, I realized, was that I didn't know how to sit still. I'm not good at being quiet. I would rather act. I like to make things happen.
"How about going to the shindig this afternoon?" I asked. Mary Francis, the hospitality director, had posted bright signs advertising a bash with cupcakes, cider, and a banjo band that would take residents' requests.
Mother snapped her head in my direction. Her black eyes were alert with interest. "He'll be there."
"The man who knocks on my door."
For months Mother had been telling me about a strange man who would rap on her door and invite her to go out. After seriously worrying about this, I decided he didn't exist. Her building was locked at night and no one else had ever seen him.
I felt as if someone else had taken over my mother's body. The mother I had known all my life was reliable, whereas this woman sitting across from me seemed delusional. I wanted to jump into my rental car and drive straight back to the airport.
But I didn't. I felt obligated to tell Mother once again that there was no such man, no courtship. On the other hand, I was profoundly weary of dragging my mother back to reality.
"Do you want to see the guy?" Though I didn't want to encourage her illusions, I was desperate.
"Yeah, I kind of want to see him," she said.
"Do you like him?"
"Well, yeah, sometimes I do."
"What's he like?"
"He's kind of tall, and he's interesting."
I thought about this.
"And I can't stay on this farm forever," my mother said.
"That's true, you can't." She had been raised on a farm. I knew, because I was steeped in her life, that by the age of 16 she had understood that farming wasn't for her.
We went on talking. I got pulled into how she was feeling. That afternoon we went to the party, which she didn't actually like much. But she went to sleep that night feeling relaxed and cared for, because I had listened to her. We had met and shared her concern in a way I didn't quite understand at the time, but which we repeated many times later.
It wasn't until later, when I was writing The Geography of Memory, that I figured out that the man must have been someone Mother remembered from her teenage years. She had described her boyfriends to me so vividly when I was a child that I could see them in my mind's eye. And then, sitting in my mother's living room in Dallas, they appeared again with presents: a potted geranium, the landscape painting, the pail of raspberries. I re-inhabited those memories with her.
As I was writing the book, I understood that the gentleman who visited Mother at Christian Care might have been "real," even though he probably didn't knock on her door. She was imagining her own past so clearly that it felt to her as if it were happening again. Her description of him was puzzling, but it wasn't crazy. My willingness to listen to her instead of contradicting her—I think of that now as hospitality. And it led to an entirely new way of connecting with her.
During my adult life, Mother and I had enjoyed a cordial relationship that centered on the celebration of holidays and her grandchildren. During the Alzheimer's decade, instead of feeling increasingly isolated from her, I began to understand her in a new way.
Thinking about caretaking as a pilgrimage didn't stop my mother from getting sicker. Trying to act with faith didn't prevent her from dying. Connecting with her during her final decade didn't save her. Nor did learning spiritual disciplines such as letting go and hospitality deliver me from the grief of her death.
But surely when we talk about Alzheimer's—particularly in the Christian community, where we all are practicing for eternity—we need to name the gains and gifts that come, even in the wake of a frightening disease. I believe that my mother, even at her foggiest, always remembered that day follows night. After winter comes spring. The peony dies, but in March it gathers strength, and by April it is in full bloom.
Jeanne Murray Walker is a poet, playwright, and professor of English at the University of Delaware. Her most recent book is The Geography of Memory: A Pilgrimage through Alzheimer's (Center Street). She lives with her husband outside Philadelphia.
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