How Shifting a Lens Can Clarify the View

Like many mother-daughter relationships, ours could be challenging. We occasionally butted heads during my formative years, and in my mid-20s, disagreements over clothing and homework became heated arguments over grocery shopping and doctor’s appointments as symptoms arose of what we would later learn was early-onset dementia. In the course of about 15 years, my mother, unbeknownst to my father and me, had begun to transform from a loving and well-organized mother and wife, to a combative and easily confused stranger.

Unfortunately, one afternoon, as my mother and I had a charged discussion wherein I begged her not to eat her fourth peanut butter and jelly sandwich (a behavior which was unlike my mother, a usually health-aware person), I thought to myself “My gosh, she is so obnoxious! Why can’t she just listen to me and eat one sandwich like a normal person! What is wrong with her?”

Slow Onset of Reality

At that point, these questions were purely rhetorical. It wasn’t until years later that it dawned on me: I was angry with my mother’s behavior because she was exhibiting the characteristics of every unlikeable older person I’d seen portrayed in television and film throughout my lifetime. It was during a moment of post-frustration self-reflection that I had a pivotal revelation: I was ageist.

At 57, my mother was diagnosed with Frontotemporal dementia, the most common form of dementia for people younger than age 65. I was only 27 when we found out my mother had this deadly, devastating disease that robs people of the personalities they once had and the memories they long held. Their careers, hobbies and relationships—all permanently disrupted.

‘I saw her through rotating lenses of pity, fury and despair.’

We can only speculate as to how long my mother lived with the disease before we started to notice symptoms and finally received an accurate diagnosis. At the onset of noticeable symptoms, I didn’t think clinically when my mother was yelling about the fact that someone purchased the wrong type of cheese or accused a mysterious “they” of grand theft of her jewelry; I was not viewing my mother through a clinical lens; I saw her through rotating lenses of pity, fury and despair.

“She’s a smart woman and this is a simple concept; why is she always so confused?” I had wondered. “What is she so angry about? It can’t possibly be about a stupid packet of shredded cheese! This is so embarrassing!” I fretted. “Is this what the rest of our life as a family will be like? I wish she would just act normal.”

One evening I had been trying to convince my mother to take her medicine after what seemed like hours (though it was probably only a few minutes). I retired to my bedroom in the condominium I share with my parents and engaged in serious self-reflection, trying to figure out what made me so angry about the look of desperate confusion in my mother’s eyes as she said, “I don’t understand what you’re asking me to do … I’m sorry,” tears streaming down her face. And mine.

The following morning, I awoke, still shaken by the previous night’s painful incident in my home. As I flipped through the network stations on our 4K TV, I came across older cartoons and sitcoms, all featuring older adult characters who were so often the punchline of tasteless jokes. I grimaced and wondered what part of these stories appealed to me as a child.

Tropes of the bitter eccentric reclusive neighbor all the kids feared, the grandmother who wraps a live cat as a Christmas gift, or the angry old lunch lady who hates little kids all began to play themselves back on the small screen of my mind.

Ageist TV Training Becomes Clear

And then it hit me: I was having a visceral reaction to my mother’s dementia-related behaviors because it was so similar to the unlikeable and disposable characters who continually showed up in so many of the films and television shows I watched during my formative years.

Once I realized that I’d been heavily impacted by these harmful stereotypes about older adults, I became intentional about shifting the lens with which I view my mother and the sickness that has altered the way she shows up in the world. I engaged in my own culture change work by responding to my mother holistically, acknowledging her personhood, not just her diagnosis or her age.

‘I engaged in my own culture change work by responding to my mother holistically, acknowledging her personhood.’

Of course, I am just one person and my home is just one household. For culture change to work, it takes many people coming together to demand that storylines in popular media depict older adults as complete human beings who, when they show signs of mental illness or neurological diseases, are still worthy of being treated with dignity by those who care for them, and everyone else they may encounter.

That is not to say that older adults must always be revered, because problematic humans grow older, too. But the more we create multidimensional narratives around older adults, particularly for children and young adults, the more we can shift individual thinking and societal behavior toward underrepresented populations. And, when we center the voices of Black women in the reimagining of stories about older adults, we know that the effects are far-reaching and long-lasting.

There are many modern stories I’ve seen on networks like PBS, such as Alma’s Way and Molly of Denali that depict older adults of color living full lives and even facing diseases like Alzheimer’s. The storylines are handled with care and invite viewers to replicate these interactions in their own lives. It is my hope that more programming for children and adults of all ages will follow the lead of such programs and do the work of creating a more empathetic and equitable society for older adults.

For, as George Washington Grover once said, “How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life you will have been all of these.”

Aisha Adkins, MPA, CNP is an advocate, storyteller, care partner and thought leader. She also works with Caring Across Generations as a constituency organizer on Cherokee Nation lands in Atlanta, GA.