Mothering My Mother

Abstract

This critically reflective autobiographical narrative aims to reveal some of the challenges that have emerged because of my mother’s struggles with Alzheimer’s disease. I undertook this writing in an attempt to offer an alternative understanding of mothering, an understanding framed by my experience of mothering my mother. This work weaves together the complexities of time—the past, present, and future—to form an intricate personal and intragenerational tapestry.

Alzheimer’s is a disease that affects everyone who comes in contact with it. Whether our encounter is the result of a diagnosis for ourselves, family members, friends, or colleagues, any contact reveals the gravity of this disease. According to the World Alzheimer’s Report, 2010 (Alzheimer’s Disease International, 2010), the estimated cost of dementia worldwide is US$604 billion. Furthermore, 35.6 million people worldwide are living with dementia, and this number will increase to 65.7 million by 2030 and will skyrocket to 115.4 million by 2050. In 2009, in the United States alone, caregivers for those who were suffering from Alzheimer’s disease and other forms of dementia provided an estimated 12.5 billion hours of unpaid care an amount valued at US$144 billion (Alzheimer’s Association, 2010). Such statistics give only a hint of the impact of Alzheimer’s disease. The personal toll for those who are within its reaches, even if only tangentially, is much less measurable. The implications for women, who are overwhelmingly the primary caregivers for family members with the disease, are significant. We are not professional caregivers, however. We frame our ethics of care around our experience; much of this “mothering” knowledge was gleaned from our mothers who mothered us.

The aim of this narrative is to reveal some of the challenges that have emerged because of my mother’s struggles with Alzheimer’s disease. My purpose in writing this article is to offer a definition/redefinition of mothering, to explore the paradox of the “superwoman,” and to reveal the complexities of mother–daughter relationships. I undertook this writing in an attempt to offer an alternative feminist understanding of mothering, one theorized and framed by my experience of mothering my mother. I quickly realized that my story of mothering was intimately interwoven with the stories of both my mother and my grandmother. The complexities of time—the past, present, and future—are woven together to form an intricate personal and intragenerational tapestry.

My autobiographical piece narrates the onset of my mother’s struggle with Alzheimer’s disease. Autobiography is a critical reflection on experience and an expression of knowledge by a knowing subject. It is, at its heart, a feminist act. I undertook this writing in an attempt to offer a glimpse of my experiences of mothering my mother. The changing and complex identities of mother and daughter are explored from a feminist perspective. Unexpectedly, the process led me to reflect on the past and on the experiences of my grandmother who also suffered from Alzheimer’s disease. I was challenged to recount and reconsider the experiences of my mother’s mothering of her mother. Telling my story, I realized, requires that I also tell the stories of both my mother and grandmother.

The complexities of time emerge through this story, in which the past, present, and future become intertwined. I am able to elicit a small glimpse of the future through our memories of the past, my mother’s and mine. In writing and remembering, I am also reimagining that past and attempting to clarify the uncertain future of this deadly disease. This process of writing and remembering is both cathartic and empowering. But where to begin this process was not at all clear. So, I will begin in the middle, when my mother was first diagnosed with Alzheimer’s.

After 6 weeks of extensive testing by neurologists, psychologists, psychiatrists, gerontologists, occupational therapists, and social workers, I knew what they would tell me. I think everyone in the family knew, but no one wanted to say that devastating word: Alzheimer’s. Nonetheless, the harshness of the word, once spoken aloud, caused an immediate outpouring of tears. The doctor broke the news to me while my mother waited outside, for which I was thankful. But then I started to wonder who I was crying for: my mother or me? And, unlike many people who hear this diagnosis for a loved one, I already knew Alzheimer’s disease from close personal experience.

My grandmother, who lived with us during my teenage years, had what people then called a “hardening of the arteries to the brain,” which we now know to be dementia or Alzheimer’s. Whatever it was called, the reality of my grandmother’s predicament changed the way our family lived. For me, it shattered the ideal of growing old gracefully. I witnessed my grandmother’s gradual decline from being a once-independent woman to a mere shadow of her former self. In her case, some of the common symptoms of the disease were exacerbated by deafness, including difficulties with communicating, learning, thinking, and reasoning. Grandma became “hard of hearing” at the age of 20, the devastating outcome of an unknown infection. She did not use American Sign Language; she had not attended a school for the deaf. She was a self-taught lip reader. The onset of her deafness during her youth allowed her to retain the memory and practices of speech more easily.

Her deafness had consequences, however; Grandma lived in a closed environment with limited contact with the larger community and had difficulty communicating beyond her family. Together with my grandfather and mother, my grandmother’s three sisters and brother were her whole world. So, in many ways, my grandmother’s world was quite small. But the center of her world was my mother, her miracle child after eight miscarriages and doctors’ warnings not to try for any more children. Since my grandfather was working around the clock during the Great Depression and war years to keep his family afloat, he was seldom home. It was not surprising that it became my mother’s responsibility to act as my grandmother’s interpreter for the hearing world. Much responsibility comes with being the child of a parent with a disability. And when my grandmother was widowed at the age of 60, her world shrank yet again. It would continue to shrink over the next 15 years until my mother decided it was time to have Grandma live with us.

Grandma’s room had been waiting for her those many years. As the only child of a deaf mother, my mother had always known that one day my grandmother would come to live with her, so it was no surprise to any of us in the family. It was not our decision to make, but we all agreed with it. My mother was a working mom, with a husband and three children, so Grandma was yet another addition to her already heavy load of responsibilities. I now see that “mothering” in this way is an endless responsibility of—and for—caring. It is neither biological nor natural. It is a burden—a burden of love perhaps—but a burden nonetheless.

In the 1970s, my mother was already the embodiment of the superwoman that feminists started to talk about and problematize in the 1980s. According to the Oxford Dictionary, a superwoman is “a woman with exceptional strength or ability, especially one who successfully manages a home, brings up children, and has a full-time job” (Oxford Dictionary, 2010). Perhaps, inspired by media images of superwomen–working moms who “do it all”—the superwoman identity is definitely more fantasy than reality for most women.

The superwoman myth increases the pressure on women both at home and at work, glorifying, rather than challenging, the demands on women to be “sacrificial” and “selfless” in “intensive mothering.” While the term superwoman is heard less often today—possibly because many women have resigned themselves to it?—the presumptions of the term continues to haunt us. Indeed, the idea that women can do it all remains. It has reentered the popular imagination and resonates in the 2008 rhythm-and-blues hit Superwoman by singer–songwriter Alicia Keys. It is the difficulty, however, of embodying the superwoman myth to which Keys refers. On the one hand, Keys commends her sisters in their continued attempts to wear this identity, and, on the other hand, she mourns the loss of self that this mantle demands.

Yet, mothering does not simply describe the physical chores of attending to the needs of children. Daughters, who are predominantly tasked by society’s patriarchal expectations with the responsibilities of caring for aging parents, are also doing “mothering” work. Mothering is about the all-consuming emotional and empathic work of caring for and nurturing others. This is the emotionally and physically exhausting labor that keeps so many women (and some men) up at night, demanding our attention and thwarting our attempts to enjoy leisure. Leisure—what a concept! As much as we may seek leisure—time with friends spent apart from our families, time even for ourselves—the mandate to mother occupies our energies and ceaselessly interrupts any much-needed respite. My mother “did it all,” including the work of caring for an aging and ailing parent.

In this sense, mothering takes on new meanings. Challenges lie in balancing the sometimes incongruous expectations of mother and daughter identities. The inevitable struggles for independence and dependence may be inverted. A seemingly natural transition from the once-dependent child to the independent daughter is complicated by the uncomfortable shift from the once-independent adult to the dependent parent. Mothering is never simple in such an ambiguous environment.

When my grandmother moved in with us, she was already exhibiting the classic symptoms of Alzheimer’s disease. At the time, we did not want to acknowledge that Grandma’s condition was severe or that it would further deteriorate. The path of denial was a much nicer road to travel than the route we were eventually forced to take. My grandmother showed signs of confusion, particularly in the initial period of resettling in a new space. However, problems that we did recognize before she moved in seemed at first to dissipate; unwarranted suspicions and fears, for example. When she had lived alone, she thought that the car lights sprayed across her room at night were people spying on her. She thought that people were inside the television watching her. She was unwilling to venture out alone to the hair salon, grocery store, or bank. She believed that her next-door neighbor of some 30 years was after her money. These fears would eventually resurface after she moved in with us, albeit in different ways. Grandma eventually came to believe that my mother was out to do her harm while, at the same time, she was excessively dependent on my mother (and later my father).

Alzheimer’s disease often causes irrational changes in personality, and this shift from dependence on my mother to dependence on my father was one indicator of these changes. We chalked it up to Grandma’s “quirkiness,” to her deafness, and to the impact of having lived alone for so many years. I now know that these quirks were the initial signs of a devastating disease that would eventually kill her.

When my grandmother first came to live with us, my dad supported the changing family situation. He was not, of course, expected to care about how this change would affect my mother or to care for my grandmother. True to his era of patriarchal privilege, when fathers and husbands were the proverbial breadwinners, occupied with the world “out there,” my father did not view his role as nurturing. This is not to say that my father was uncaring. I do not want to claim that men are incapable of such emotional practices. The “deal” was that the burden was my mother’s exclusively, and so it was, at least until she could no longer meet the challenges of mothering her mother.

Those 5 years that my grandmother lived with us were mostly joyful, as I remember them, filled with outings to the farm, restaurants, and happy events. I reflect now that my grandmother was somehow freed by the disease from patriarchal and gendered expectations of womanhood. She began to wear slacks without questioning how doing so reflected on her femininity, something that would have been impossible for her to do a few years earlier. Since I was perhaps the most interested in her stories, she talked to me incessantly. By listening, I became not just her granddaughter, but another nurturer, another mother. I loved these stories, and they are still precious to me. As time passed, however, the stories became more repetitive and eventually more difficult to follow. Sometimes Grandma would refer to me as “Yvonne,” using my mother’s name rather than mine. As time went by, I became “Yvonne” more often than myself. This change saddened me—not for the loss of my self, but for the loss of my grandmother’s cognitive powers.

Since my mother worked full time, I had to care for my grandmother when I was not at school. I thought of it as a bit like babysitting: I made her tea and snacks, sometimes we went to the park, we always sat and talked, we watched television, I prepared dinner, and I generally tried to make her happy. This mothering role was not unwelcome. I had always been close to my grandmother, and, in the beginning, it seemed like a sensible practice rather than a chore. As the disease progressed, however, my Grandma’s behavior increasingly became more difficult. Her repetition of stories, confusion, bizarre questions, and constantly misplacing items indicated the encroachment of the disease, shrinking her world yet again. Yet, I managed to take her erratic mood swings and outbursts of anger in stride, as did the rest of the family, although they affected Grandma’s “mothers” the most.

We tried to adjust to Grandma’s “eccentricities”—including her wearing multiple layers of clothing, singing in an offensively off-key fashion in the middle of the night, and stubbornly resisting our requests to go back to sleep. I thought, and still do, that this behavior was funny, but in hindsight, I doubt that my mother found it amusing. After all, it was unmistakable evidence that things were not quite right. When questioned about her behavior, my grandmother readily explained that she and her (long-deceased) sisters were rehearsing for their upcoming musical tour. To the outsider, such an explanation may seem absurd; for us, it was just Grandma reimagining her early adulthood as a professional musician, for she had been an accomplished working pianist before deafness overtook her. Again in hindsight, perhaps this behavior was simply her opportunity to realize an unfulfilled dream, even if it were possible only within the prison of her tormented mind.

It was the wandering that eventually forced my mother to find an alternative living arrangement for my grandmother. I remember my mother’s pain in making this decision. My mother told me later—I think it was at my grandmother’s funeral—that the day she put her mother in a nursing home was the day she became an orphan. The loss of her mother both physically and emotionally seemed overwhelming. My mother thought that my grandmother had really died that day, 3 years earlier, when she moved out of our house. And I remembered all this, that day, the day when the doctor told me that my own mother would share the same fate. Indeed, who was I crying for when the doctor spoke the word: My grandmother? My mother? Me? All three of us?

With the reality of my mother’s diagnosis firmly embedded in my consciousness, I was then told that there was no way to anticipate the future. The doctors could not predict the rate of decline; they could only assure me that it would happen and that I needed to be prepared. So far, these preparations have included bringing my parents to live with me, my husband James, and our two teenage daughters. In truth, I had already started to prepare before the diagnosis, when I knew that my mom had memory “issues,” what we had begun to refer to as her “lapses.” About a year before we knew about my mother’s Alzheimer’s disease, my father was diagnosed with leukemia. Given my mother’s memory issues, this diagnosis increased the urgency of the decision that James and I made. Clearly, my parents could no longer care for themselves or for each other without assistance. Consequently, the “sandwich” was made—the kids on one side, my parents on the other, and James and I stuck in the middle. An interrogation of that metaphor, however, will have to wait for another writing.

Moving my parents in with us was an incredibly complicated process. Preparations included purging and packing the family home, staging and selling their house, finding a new house that was large enough to accommodate everyone, renovating the new house to make it safe and accessible, and living on top of each other until the renovations were completed. Our preparations did not end with bringing mom and dad to our house. Once settled into our house, my mother, with supervision, was eventually able to negotiate the simple tasks of locating her room, finding the bathrooms, and discovering the correct light switches. We settled into a routine. However, I know that further preparations will be required. The uncertainty of the future weighs heavily on my mind. I am told by medical professionals to start the search for “alternative” places for my mother to live. The ominous inevitability that I will not be able to care for her continues to wear on me. I resist the thoughts of my mom moving into a nursing home. I certainly do not want to be an orphan. Even now, almost a year after the diagnosis and knowing that the waiting lists for these places, these “homes,” can stretch as long as four years, I am incapable of taking that next step. Instead, I do what my mother did. I try to make my mother as happy as possible. I love her. I listen to her stories—often the same stories time and again, and again, and again. I care for her. And I laugh with her.

My mother has a wicked sense of humor, and, even in her compromised state, she can be brilliant. When I told her that her beloved dog had died, after her tears had subsided, she remarked in her chirpy and ever-optimistic way: “Better him than us!” Humor is something that helps me during the tough times, when I am struggling to get my mother to take a shower or brush her teeth. One of the characteristics of those with Alzheimer’s disease is a reluctance to engage in the tasks of daily personal hygiene. When my mother first moved in with us, I insisted that she shower daily. I have since then picked my battles more carefully. If I can catch mom before she gets out of bed, I can often get her to the shower without a problem. If not, if I am at work or otherwise occupied, trying to get her to have a shower after she is already dressed, always in the same clothes that she has worn since her last shower, is impossible. Sometimes I feel like the hygiene police, monitoring her habits. Other times I feel like a teacher explaining to a young student that everyone needs a shower. At all times, I feel like a mother caring for my childlike mother.

Sometimes I succeed and other times I fail in my efforts. However, humor helps me to persevere. For instance, one of the excuses my mom slyly resorts to when she wants to avoid a shower is: “I don’t need a shower! I’m not even getting dirty and sweaty anymore. Not that I wouldn’t like to, mind you!” Her sexual innuendo, combined with the ridiculousness of the situation, results not only in fits of laughter, but in a realization of what is important. After all, “what did people do in the olden days?” my mother retorts, reminding me that she grew up in a house without a bathtub; that showers were a weekly luxury and bathing was a chore, “what with heating the water on the stove and such; pouring it over yourself or having my mother pour it over me while I sat in that huge tub in the center of the kitchen.” How can I insist on my mom taking a shower when the logic of her argument is so clear to her?

Another of the interminable tasks of my mothering is keeping mom engaged and occupied when I am busy. Ever the mother, my mom always wants to help and is frustrated when she cannot. My mother always said that she would never live with her kids. Indeed, she said she would leave her home of almost 50 years only “feet first,” meaning not of her own volition, but being carried out after she died. Her fear of being a burden, perhaps as she perceives her mother was, is not something new. Her helping me is important. It is important for both of us because if she helps, she does not feel she is a burden, and if she still can help, that means that Alzheimer’s has not taken her away from me. Not being a burden and not feeling useless are critical to her self-esteem. So, I continue to find “make work” projects for my mother, tasks that she can do and feel accomplished in doing them. Yet, this is one more mothering task that I undertake.

When she asks to help, I respond positively, “Yes, mom, come and sit on the stool at the counter and keep me company. You’re such good company. How could I peel these potatoes or make a salad without your help?” My mom mutters under her breath: “Useless; useless as tits on a bull.” Again things shift; I attempt to distract her with the compliments that are always appreciated, no matter what the age. “Mom, you’re so cute. I really, really love you. How come you’re so good looking? How come you’re so funny?” To the latter she responds, “funny ha, ha? Or funny cuckoo?” “Of course, funny ha, ha!” And so our conversation, or lack thereof, continues. “Can I help?” “Yes mom, you can fold these towels.” This is the same basket of towels that she tirelessly folds again and again without recognizing that she is repeating the process. After all, she only wants to help. “Helping” me continues to be an important focus for my mom. It makes her happy. Who cares if they are the same towels as before? It makes me happy, too.

The daily tasks of mothering are often overwhelming. James has taken on the majority of the physical tasks—the cooking, the cleaning, the laundry, the chauffeuring to the never-ending series of doctors’ appointments for both my mom and dad. Many of these physical tasks are defined as “mothering work.” The more intangible, less definable, and nontransferable aspects of mothering remain mine. I am the one who worries, organizes, manages, coordinates, arranges, listens, laughs, touches, and, above all, pretends. It seems important to pretend that all is well and that my mother is not declining. I feel it is my responsibility to make things as “normal” as possible for everyone—the kids, James, my dad, and me—last, of course, me!

Have I fallen into that conundrum of the superwoman? I am not sure. The slope is a slippery one. And the social pressure to embrace the mantra “I can do it all” is strong. I am not alone in negotiating this difficult territory. Women everywhere struggle with the physical and emotional work of mothering while working. If it were just the physical exhaustion of doing the cooking, the cleaning, and the laundry after working all day, most of us could cope. Adding the unending tasks of caring for children—helping with homework, listening to their stories, playing games, guiding their learning, monitoring their behavior, encouraging their imaginations, and so much more—leaves little time or energy for women to care for themselves.

I continue to rely on my husband and my kids in caring for my mother. Yet, ultimately it is me who I rely on the most. Only I am my mother’s daughter. This bond for me is unbreakable and at times unbearable. The heart-wrenching pain that I feel when my mother struggles to figure out how to move from one space to another, when she attempts to put on her shoes and cannot figure out which is left and which is right, when her face flushes with confusion, or when she is trying to figure out new surroundings is undeniable. Yet, with each of these glimpses into my mother’s life, I am reminded of my mother’s former self. I am filled with the warmth and joy of a daughter’s love.

So why am I crying? I have learned to mother my mother—from my mother mothering her mother—and perhaps my kids will learn to mother me. Together we continue to resist Alzheimer’s disease. I continue to hope for a bit more time before I become an Alzheimer’s “orphan.” I repeat, sometimes louder than at other times, “Not yet; please, just not yet!” Daughters still need their mothers, even when they are increasingly called upon to mother them.