What Caregiving Taught Me About Femininity and My Own Future
My mother's insistence on a beauty routine, challenged by her dementia, has made me determined to redefine beauty as I age
In February 2013, I handed in my 2-week notice at my job of seven months. It was my first full-time job after a series of part-time and contract positions. Graduating into the Great Recession with a degree in social services left me with few options, but I was determined to hang onto the elusive American Dream.
Little did I know that I would take two steps forward and ten steps back in attaining that dream when my mother was diagnosed with frontotemporal degeneration (FTD) a rare form of dementia impacting people under the age of 60. Although I did not know much about the disease, I learned just enough from the Association for Frontotemporal Degeneration's website to know that my mother should not be left alone for her own safety.
As my mother's disease progressed, so did her inability to manage her appearance in a way that upheld her dignity.
Becoming my mother's caregiver revealed a number of things. First, I learned that caring for someone living with dementia will test your patience and break your heart all at the same time. They may misremember major life events and become angry over delusional thoughts, fearful of hallucinations.
What I did not expect was that my mother's challenges would extend beyond the mental to the physical. While my mother maintained her ability to dress herself years into her diagnosis, her ability to maintain her femininity and uphold her polished appearance began to fade early on.
Maintaining Appearances
I noticed subtle changes to my mother's capabilities at first. Her difficulties were most apparent while getting ready for church, a lifelong ritual for her. Simple, yet, in my opinion, unnecessary tasks, like applying hair removal cream to her upper lip or mascara to her thinning eyelashes, were becoming more difficult week by week. As my mother's disease progressed, so did her inability to manage her appearance in a way that upheld her dignity.
My mother's dignity was inextricably connected to the femininity she'd been taught to live by. A child of the 50s and 60s, she would enter her teens before she was allowed to wear pants to school.
On the occasions when she did wear skirts and dresses in adolescence, her stepmother and other women in her life paid much attention to how she sat and whether or not she was wearing pantyhose. So it made perfect sense that as her memory brought her back to those days of intense scrutiny, she became preoccupied with wearing garments that epitomized, in her view, femininity and proper womanhood.
In my own childhood, there was much discussion between my mother and myself about what was ladylike and how a young lady should behave. My earliest memories included intense debate over whether or not I was girly enough, with other girls on the playground claiming that my dark skin, glasses, coarse hair and raspy voice made me a boy and that they would not play with boys.
When you are caring for someone whose brain is trapped in a bygone era, there is no convincing that person that it is okay to attend church without pantyhose or to leave the house without earrings.
That's right. At four years old, I discovered that there was a specific standard of beauty to which I could not live up. This reality loomed as I spent my teen years and early twenties trying to assemble my feminine identity, to be "girly enough."
By the time I began caring for my mother in my late twenties, I had come to resent the Eurocentric standard of beauty that placed women with long, straight, blond hair, thin waists, and fair skin on a pedestal and everyone else on rungs below them. The hairless limbs, perky bosoms and painted faces ruled supreme, and every other frame was put to shame.
I am not the only female-identifying person to take issue with these seemingly impossible beauty standards. The body-positive and body-acceptance movements and their leaders are evidence of a sea change among some women. But when you are caring for someone whose brain is trapped in a bygone era, there is no convincing that person that it is okay to attend church without pantyhose or to leave the house without earrings.
While the hours-long disputes may seem inconsequential, now that my mother has passed, I find regret in my grief. I am saddened to know that so much time was wasted on fighting to make sure my mother had the "perfect" feminine presentation before she left the house. Precious hours we would never get back.
The problem, however, was not with my mother or the disease that ultimately took her life. No, the problem, I am afraid, is with our sexist, ageist, ableist society that celebrates some women and denigrates others.
What if, instead of being taught to shrink herself to fit unfair physical criteria, she had been taught to embrace herself as she was and find her beauty in freedom from the male gaze?
I recall one Sunday in particular when I was hurriedly wheeling my mother out of the wheelchair-accessible stall in the basement bathroom. A woman I didn't know came over to me, a concerned look on her face. At first, I thought she might offer to help hold the door. Instead, she informed me that my mother's slip was showing and that it was my job to make sure she was presentable at all times.
That encounter was just one where a well-meaning stranger provided commentary on my mother's dress or overall appearance. But one embarrassing interaction was one too many. Shortly after that incident, my family and I stopped attending church in person. I was both heartbroken and relieved. Not only did we no longer wish to be subjected to unsolicited criticism, I was also unsure I would be able to dress my mother in a way that the public would find acceptable and that my mother, before her illness, would have been proud to be seen.
My Own Feelings of Identity
A little more than a year after my mother's passing, I have taken time to think. Primarily I've wondered if my mother's life with FTD would have been better or easier if she never cared about wearing a bra or having a little bit of hair on her upper lip. What if, instead of being taught to shrink herself to fit unfair physical criteria, she had been taught to embrace herself as she was and find her beauty in freedom from the male gaze?
I will give myself permission to redefine beauty as I age, emphasizing the inner spirit over the outward appearance.
After caring for my mother for a decade, I cannot help but consider my own future given my complicated feelings about womanhood and identity. How long will I continue to dress and groom myself in ways that are inconsistent with my highest level of comfort? I have already cast aside high heels in anticipation of changing mobility as I navigate the world with arthritis and neurological challenges.
What's next? Should I reclaim my time by refusing to spend hours in the hair salon, choosing a short, cropped hairdo? Shall I no longer bother removing the hair from my legs and underarms and let it grow the way God intended?
I cannot predict the future, but I can vow to myself that I will choose comfort over conformity. As a Black, queer, plus-sized, neurodivergent woman living with physical and mental disabilities, life is hard enough. At forty, I am learning that aging is not without its inherent challenges. It is my goal to lean into softness and gentleness.
I will give myself permission to redefine beauty as I age, emphasizing the inner spirit over the outward appearance. I will focus on holistic health and defy the myth of aging gracefully. I will age by my own definition of beauty and find the freedom my mother never did. I will live out my values for the rest of my life.
Her versatility has enabled her to publish works both in academic journals and popular publications, including the American Society on Aging’s Generations Journal, Blavity, Thrive and Nursing Administration Quarterly. She recently completed the Columbia University’s Age Boom Academy 2023 fellowship cohort. Read More