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?