Alzheimer's Role Reversal
Once my mother took care of me. Now, as this brain disease turns her into a child, it's my turn to be the parent.
Mirrors. I’ve been thinking about them a lot lately. About how we look in them to study our reflections, see the slope of a forehead, the slant of a jaw. About how in our youth, we seek them out in curiosity and anticipation. How do I look? And in apprehension as we age. Is that really me?
People can be mirrors, too—and sometimes they offer much more accurate reflections of who we are, or want to be. It used to be that my mother was the most accurate mirror of my life. I could look in her face and see the continuum of events and people and dreams that made up my life up to that particular point: the time I broke my arm at Tommy’s Roller Rink; the time, while dress-clad, I climbed a chain-link fence with my cousins and got hung up by my panties; the pimply-faced boy I was making out with on the corner when Mom drove by; the school principal who caught me at the park when I should have been in class; the journalism career I yearned for; the man with whom I fell in love.
I could look in my mother and see myself.
But mirrors fog and crack. They break. And so do people.
My mother is almost 80 now. She was diagnosed with Alzheimer’s Dementia almost three years ago. She cannot drive, she cannot cook, she cannot be alone. She still lives in El Paso, our hometown since I was in seventh grade, where my sister has pieced together a patchwork of care comprised of herself, other family members, and Medicaid help. Several times a year, I travel there and bring Mom back with me to Southlake, where I care for her several weeks at a time to give my sister a break from the doctors appointments, the juggling of caregiver schedules, the filling of prescriptions—the incredibly difficult job of being someone else’s brain.
My own caregiving days blur with time-gobbling tasks. I prepare Mom’s meals, wash her clothes, dole out medications, remind her to brush her teeth, wash her hands, go to bed, wake up. It is never-ending. But in those minuscule, infrequent pockets of time between tasks—when I put Mom to bed for instance, and she’s lying back on her pillow smiling at me—I search for myself in the cracked mirror of her face. It was easier when she was well, when our roles were that of mother and daughter, and not of mother and caregiver.
Who am I, Mom? I wonder. Girl? Daughter? Caregiver? I used to find myself in you so easily, but not anymore. Who am I now, Mom?
I’ve wept in the privacy of my shower, raged in the cool silence of my closet—lamented that Alzheimer’s is stealing my mother from me.
In late October, I bring my mom to my Southlake home. My sister will have all of November without worrying about her, and our brother, who also lives in North Texas, will escort her back home in early December. My brother will also step in to help with Mom. Having her here requires that my husband, John, and I plan our schedules carefully. There are places and events where we can take her and others we can’t because she becomes easily confused and frightened.
There are only two big concerns I have about her being with me this time around. My oldest dog has been very sick. I’m grappling with the decision of whether—and when—to euthanize him. I’m selfish in my grief, and I will want to be alone when this time comes. What will I do with my mom given that I’m not likely to have a choice in the timing? But even more worrisome, one of my uncles, my mother’s youngest brother, is going through chemotherapy for cancer, and his chances of survival look pretty grim. Mom no longer remembers him, but it feels important to me that she be able to say goodbye if he dies. Unfortunately, I have no way to assuage my worries except to hope that the next five weeks will go smoothly and, if not, that I’ll be able to handle whatever comes.
We settle into a routine in the first week. Knowing that exercise keeps us sane, John and I sneak out for spin class so early in the morning that even our dogs don’t budge. Mom sleeps long past our predawn forays, so most mornings I don’t worry. I give myself over completely to the leg-pumping, heart-thumping, sweat-pouring hour.
But one morning as I straddle the bike, a dream-like image pops into my mind: I’m on the bike, pulling a wagon attached to it, and my mother is in the wagon. And as I pull her along, my legs pumping exponentially harder, my heart rate goes up, and just like that, my concentration dissolves.
I think of Mom asleep at home. And wonder: what do dreams look like in a mind with dementia? Do unrecognized people, lips smiling, hands reaching out for her, float through my mother’s dreams? What about my uncle Guillermo, the sick one who my mother does not remember but whose name she has carefully written on her prayer list? Does she see his mustached baby-face in her sleep? And then I think about the moment yesterday when my mother suddenly looked at me and reminded me tenderly, sweetly, of how much she loved us when we were kids—“Tanto que los quise yo cuando estaban chiquitos”—and the words in my native tongue catch and burn in my throat, and I’m forced to slow down my legs for fear my heart will burst and I will die of heartbreak in my health club.
Mornings, after I get home from the gym, I wake my mother as gently and playfully as possible. Sometimes I peel back the cover from her face and say, “Pajarito, pajarito, des-pier-ta! Wake up, little bird!” And she opens her eyes and giggles. “Why do you say that? I’m not a bird!”
Other times, I sing her awake with a favorite song: “Buenos días paloma blanca, hoy te vengo a saludar.” I try to bear in mind the literature about Alzheimer’s, the things I hear in my support group. Alzheimer’s patients feel a caregiver’s mood, whether it’s sad, angry, or anxious. My goal is to speak slowly, patiently, and to sound happy, no matter how I’m feeling.
On sunny days, we go for walks, holding hands as we make our way. I live in northernmost Southlake, where the city hugs Lake Grapevine and the cross timbers around the water is home to bobcats, coyotes, and deer. This is also horse country. My mother grew up in rural Mexico with a love of riding. She even carries in her wallet a tiny snapshot of her younger self on horseback. On previous visits, she enjoyed watching the riders who saddle up at the park nearby and lead their mounts into the woods. She also eyed our neighbors’ horses wistfully, saying, “I wish you had a horse, because if you did, I would ride it.” But now, she barely glances at them as we walk by their pastures. In fact, our conversations are more limited and childlike every day.
Mostly, she counts the birds on the power lines, saying, “I see one, two, three, four, five, six, seven. I see seven birds!” In terms of sheer numbers, the flock of turkey vultures that roost in a nearby cell phone tower are a delight that prompts her to exclaim, “Look how many there are!” But once we’re back home, she immediately sits in her favorite chair and pulls out her rosary and prayer books.
During one of my writers’ groups, I lament that my mother refuses to do anything except pray when she’s indoors. Not that I dislike prayer, but I worry about her losing even more of her cognitive skills because she won’t do anything else. Someone suggests she might enjoy some task such as painting, and asks do I have watercolors? I don’t, but back at home, I dig through a closet and pull out a box of crayons that colleagues gave me years ago as a joke when I was awarded a Harvard fellowship. I also unearth a coloring book someone else gave me for some long-forgotten reason. That evening after supper, I spread out the book and crayons on the table, and to my relief, my mother takes to them like an earnest 5-year-old, asking me over and over, “What color should I put here? And what about here?” Over the next few days, she fills in the outlines of dragons, lions, dogs, and cats with waxy swirls of Periwinkle, Raw Sienna, Jungle Green, Dandelion, and Carnation Pink.
I love my mom, but my energy flags quickly. Preparing three meals a day stretches my domestic creativity to its absolute limit, and some days, I find myself parroting things to John that I usually say to my mother: “Look at that airplane!” Or, “Look how many birds are on that line.”
Then there’s work. I need to squeeze in my writing and photo assignments. The bottom line is that I’m exhausted. Even when my brother takes over for us one evening so John and I can get out of the house, we’re too tired to do anything besides drive to a nearby sub shop for a sandwich.
One day, a client of my husband’s asks to hire me. He needs a photographer for a full-day shoot at our TV studios—tomorrow. I would be working with some unfamiliar equipment he has requested, so I hesitate. But in the end, I agree to do it, thinking I can set my mother up in our VIP suite with her rosary and prayer books.
I put her to bed early that night, so we can get an early start the next day. Like an obedient child, she brushes her teeth and slides under the covers. Her face is lined with wrinkles now, eight decades worth of life etched on the planes of her face, yet her expression bears little evidence of some of the harsh moments of her life. Innocent. That’s the word that comes to mind as I look at her.
How is it that Alzheimer’s can eradicate an entire lifetime of memories? I obsess about memory. If you can’t remember who you are or where you’ve been, then doesn’t that render you somehow nonexistent? Aren’t we, in a sense, the sum of our memories? It infuriates me that this disease is scrubbing my mother’s mind clean of memories of me, as well. It is, in effect, erasing part of my life, too. And there are parts of my life to which only my mother can testify, secret parts that I’ve long counted on her to validate and hold safe in her heart.
I’ve wept in the privacy of my shower, raged in the cool silence of my closet—lamented that Alzheimer’s is stealing my mother from me. Years of introspection have allowed me to be honest about myself. I can be vengeful and angry, veritably bloated with ancient grudges. I can be a real bitch. But here is one simple truth that I hope absolves me a just little bit: Alzheimer’s is so vile that there is no one—not even the violent ex-boyfriend who I sometimes think I should have gone ahead and mowed down with my car that time—absolutely no one on whom I would wish this disease. I know way too much about it.
John’s grandmother was diagnosed with Alzheimer’s in the mid-’90s. At the time, we helped move her into an assisted living facility, and then into a memory care facility when she required more care. Within months of her death from the disease, my mother-in-law was diagnosed, and we moved her into our home for several months, then into assisted living. As her dementia progressed, we had to transfer her to the dementia unit of the same residence, and when the standards of care deteriorated there, we moved her into yet another residence.
She is now in the late stages of the disease. She’s unable to walk, talk, feed herself, or respond to us. She doesn’t even know who we are. Alzheimer’s is not a memory disease; it’s physiological. Assuming that my own mother doesn’t come down with cancer or succumb to heart failure, the disease will eventually make her body forget how to perform even the involuntary functions such as breathing and swallowing. It will kill her.
For now, however, it’s the loss of memory that hurts the most. And as I study my mother’s peaceful face in the lamp light, I wonder if there isn’t something in this for which to be grateful. On one hand, I am justifiably angry that her memory and cognition are so swiftly eroding. On the other hand, can forgetting offer its own kind of respite? Can forgetting something painful disarm its power to hurt you anymore?
The Las Cruces neighborhood where I spent the first 12 years of my life was quiet and sparsely populated. Beyond the residential streets spread an expanse of desert dotted with mesquite and dry washes that became raging arroyos when it rained, and that desert, with its living treasures of blue-tailed lizards, horned toads, snakes, beetles, and spiders was my playground. Our elementary school had one of each grade, first through sixth, and a few special education classes. It was the late 1960s and one of the most indelible icons of those years was a sign. A symbol, really, a red hand with fingers up and palm out, stenciled against a yellow background. Or perhaps the background was white. I don’t remember. The symbol designated a safe place, a helping hand. If you were a little kid coming home from school or from a friend’s house and you suddenly felt unsafe, you were supposed to run to one of these homes for help.
To my knowledge, no one I knew ever had occasion to use this symbol, but stories about child snatchings abounded. Maybe well-meaning adults in our lives scared us to keep us safe. Because scared we were: of unknown men cruising our streets, of the people who lived in a trailer park down the road, of anything that was out of the ordinary for us. One neighbor even stopped me on the way home from school once to tell me a carload of hippies had grabbed a boy walking along the street, so I’d better be careful.
While we were looking among strangers for the cucuy, as we Mexicans call the boogeyman, he appeared much closer to home. It was one of my father’s brothers, an uncle, who sexually abused me when I was just a few years old. No charges were filed, ever, though he did leave me with a legacy of anger and some serious therapy expenses later in my life. I return to this not to rehash the past, but to study my mother, the forces that shaped her—especially after the abuse—and that shaped our relationship. I look back, too, as a way to find myself again in her, to see who I have been to her, and who I might become on this leg of our journey together.
After the abuse, my mother became more watchful, more of a grizzly bear on alert to the safety of her nearby cubs, though it would be decades before I made this connection. When I look back at those days, the scenes of my childhood are colored by this yellow-green haze of my mother’s perpetual vigilance. She was tough.
One day, while my siblings and I played in our front yard, a man cruised slowly by in a station wagon, eyeballing us. We were small, all of us probably younger than 10. The man must have driven by several times, because my mother came outside and called out to him, point-blank asked him what he wanted. The images and sounds of the moment are disjointed: his ruddy face and squinty eyes cutting across at my mother; the shake of his head as he paused, window down to hear my mother; my mother’s voice edged with something metallic and sharp; and the car slowly rolling away, up the street. Thinking back, I recognize the steel in my mother’s tone as the fierce determination of a woman who recalls the past and issues edict: you will not touch my children.
We didn’t see him again, though my mother was by then a career sentinel over her children. She often trained her watchfulness on me, in particular. Maybe it’s because I’m her firstborn, and by the time my siblings arrived, she was more relaxed. Or maybe it’s because she would forever be searching my face for a reflection of that assault known only to us and one of her sisters, my favorite aunt. We had, in fact, buried that part of our story so deep that it would be years before we’d be able to dredge it up together tearfully, regretfully, to examine its consequences on our lives. Then we would rebury it, because it was just too painful to have out in the open.
And then one day I woke up and it was 2007, and the fogs of dementia were rolling across my mother’s brain. She and one of my aunts—the one who shared our secret—were in North Texas with me when we learned that the uncle who’d abused me had died. And my mother, still friends with my father despite their divorce, lamented being away from home and unable to give a proper condolence to my dad—went so far as saying that she regretted not being able to attend my uncle’s funeral. And when my astounded aunt asked her what business she might have at the funeral of her daughter’s abuser, my mother burst into tears. She had completely forgotten.
Sometimes, now, I look in my mother’s face and search for the reflection of that long ago trauma, and when I don’t see it, I long to ask for her validation of my pain once more: “Mom, do you remember that day? Do you remember?” But I don’t. Because she would just smile abashedly and say, “I don’t remember.”
And maybe that’s a good thing.
As an attendant wheels my mom away in the bustle and noise of Love Field, I realize that by the time the plane touches down, she will have forgotten much of her time with me. In fact, she probably already has.
My studio shoot goes poorly. Or maybe it just feels that way because I’m having an off day; I’m tired and can’t think clearly. What’s worse is that for some reason, my mother woke up more fearful and paranoid than usual. Terrified that I’m going to abandon her, she won’t stay put, wanders around the building looking for me, which only flusters me more. “Where is she?” I hear her ask John as I perch atop a ladder fumbling with apertures, shutter speeds, and a cable release. “Where is she?”
I don’t cry easily, but some days just beg for indulging in a great big pity party complete with a baseball bat and sad piñata. Today is one of them. I want to wail. I want to kick and scream, “It’s not fair! Why me? Why my mother?” None of this helps my feelings of frustration, my ineptitude in the studio today, my fears of blowing this job and making a fool of myself.
Finally, I tell myself to stop. To remember that in my career I’ve managed some pretty complicated stories under adverse conditions. That I’ve hung with gang members who showed off their guns and taunted me with threats of rape. That I’ve covered stories in other countries and that I once had all my photo equipment stolen in Mexico and, damn it, I hunted that thief down and I got it back. I have a Pulitzer for Christ’s sake! I can make it through this day.
And I do.
On the way home, the title of M.A. Harper’s novel about a woman caring for her demented mother loops through my mind, “The worst day of my life, so far. The worst day of my life, so far. The worst day of my life, so far.” It describes the day perfectly.
By the time we get home, our old dog Zeke is nearing the end. John and I vacillate. Of all our dogs, Zeke has always been the most wary of veterinarians and needles. So when he is finally resting peacefully but is otherwise responsive, we decide to wait out the night. The next morning, he has a seizure. We load him in the car and head to the vet, but he dies before we can get there. Mom is still asleep when we get home.
We have a client who is scheduled to tape a stand-up shortly in the same studio where I worked yesterday, and because I wrote the stand-up, I’m the one who needs to head to work. I wipe my face and remember to smile when I wake my mother to say that John will feed her breakfast and I’ll be back shortly.
It turns out I was right about yesterday. But today is now the worst day of my life, so far.
The Saturday before Thanksgiving, one of my cousins calls to say that my mother’s youngest brother has died. Mom is sitting on the couch with her prayer books when I take her hand and break the news.
“Mom, I have to tell you something,” I say. “Your brother died this morning.”
Sadness creases her forehead momentarily. “Cómo me puede,” she says. But her grief is fleeting. How can you weep for someone you don’t remember? She seems mostly puzzled, and says, “But I was praying for him,” as if wondering how he could have died when she was interceding on his behalf.
“Well, now you have to pray for the repose of his soul,” I say gently, and add another role to the ones I’ve assumed in my mother’s decline: mourner.
Two days later, more than 600 miles away, our family buries one of its own. In North Texas, my mother concentrates on her coloring book. And I remember my uncle, the one who, in his infancy, was the family favorite, coddled and sung to sleep by his sisters, including the one who sits at my kitchen table clutching a crayon bouquet.
Mom returns home on a cold evening in early December. My brother is flying home with her, and already there are major changes. For the first time in her life, my mother makes her way to the Love Field gate in a wheelchair. She fell on the first leg of this trip, at the El Paso airport, and we all decided a wheelchair is safer. And although it goes unspoken among us, we know this is likely Mom’s last trip. Travel is more difficult, more disruptive for her. From now on, when my sister needs a break from caregiving, we will travel to El Paso.
As an attendant wheels her away in the bustle and noise of Love Field, my brother walking close by, I realize that by the time the plane touches down, Mom will have forgotten much of her time with me. In fact, she probably already has.
It’s up to us, her family, to reflect the parts of her life that made her who she was so that she doesn’t completely disappear. I promise myself that from now on, I will be to her what she has been to me most of my life, a reflection of where she has been, what she has done, and what she has hoped for.
I will remember.
Beatriz Terrazas was part of a team in 1994 at the Dallas Morning News that won the Pulitzer Prize for a project on violence against women.