Grace in the Shadow of Dementia

BYTA BYTES

Speak Up and Speak Out!

Grace in the Shadow of Dementia

Janina M. Edwards

In 2017, I was flying to Chicago every month to support my parents. My father had been diagnosed with Normal Pressure Hydrocephalus, a brain disorder that took away his ability to walk. The only viable option was to place him in long-term palliative care at a clinical nursing facility. I was heartbroken with the decision but saw no other way forward. I lived in Atlanta. My brother was in New York City. If we brought my father home, my mother would have to care for him hand and foot. She had just been diagnosed with Alzheimer’s. Though was still high-functioning and living independently with daily assistance, caring for my father would be more than she could manage. Before long, even caring for herself might become a challenge.

As a Black person, there’s a strong chance that dementia will touch your life—whether as a primary caregiver, a support system for someone providing care, or as someone who may develop dementia yourself. The National Institute on Aging reports that Black Americans are about twice as likely as Caucasians to develop Alzheimer’s and related dementias. Mental Health America notes that nearly 40 percent of caregivers today identify as Black or people of color. Daughters bear a heavy burden: according to PBS News Weekend, women comprise almost 60 percent of unpaid caregivers in the U.S.

As Black yoga teachers, we possess unique skills that equip us to meet this challenge mindfully. No yoga pose can cure dementia—or any disease—but the yamas, niyamas, and other teachings of yoga may help you navigate the demanding season of caregiving. For more than ten years, yogic wisdom sustained and supported me as my parents’ caregiver. 

Taking the Reins

Becoming a caregiver for an elder is different from being a parent. Parents get to watch their children grow, learn new skills, and gain independence. Elder caregivers, on the other hand, navigate a journey of loss—loss of independence, both theirs and yours, as well as the slow disappearance of the person who once raised you. Even if your relationship with your elder is complicated, a dementia diagnosis brings anticipatory grief: disease inevitably leads to death. As the full cycle of life unfolds before you, you must muster the mental and spiritual fortitude to endure. In this challenging reality, having the choice and opportunity to practice yogic teachings can help us face the messiness of our lives with grace and strength. 

One summer, as a visit to Chicago neared its end, I prepared to fly back to Atlanta. I had checked everything off my list—escorting my mother to see my father, cooking and freezing meals, replacing light bulbs, speaking with doctors, paying bills, and more. I secretly hoped for a simple thank you. I asked my mother if there was anything else she needed me to do before I left.

She pointed to the side garden, overgrown with weeds, where her cherished roses and peonies were being choked out. “Weed the garden,” she said.

Internally, I went ballistic. The garden seemed like the least important thing to take care of. I stomped around my bedroom, muttering about her ingratitude. But deep down, I knew this wasn’t personal. It is common among seniors to develop an inward-facing focus that shows up as selfishness. Dementia only intensifies that inward gaze. Still, it stung. In my mother’s eyes, I was still a child to be ordered around. I couldn’t possibly be in charge of anything, despite the reality that I was the one holding everything together—managing their home, their care, and their well-being.

As I began to calm down, I started to see the yogic lesson in the situation. I thought, “You happily pull weeds in the Atlanta ashram’s garden. How is this any different?” With that shift in perspective, I decided to approach my mother’s garden as a moving prayer—a puja. If this is what she needs, I will do it with intention.

I went out and purchased weed-blocking fabric, mulch, and several new plants to enhance the area. With single-minded focus, I tackled the weeds, clearing the way for her roses and peonies to thrive once again.

It felt good to move my body outdoors, under the sun. My hands in the dirt grounded me, connecting me to the earth and my root chakra, and reminding me that the earliest yogis designed their asanas to reflect nature. The labor of weeding and planting loosened my anxieties like the weeds I pulled from the soil.

Cultivating dharana—concentration and focus—was essential amid the chaos and complexity of caregiving. With constant trips back and forth to support both parents while managing my own work, I needed a way to remain present. The ability to quiet my mind allowed me to truly listen—to hear what the doctors and social workers were saying, to witness my parents’ experiences, and to accept that, sometimes, all we can do is hold space for what unfolds.

Take Care of Yourself

When I finished the garden, I took a few pictures. Feeling proud, I went inside to show my mother the results of my work. I waited for her praise. Instead, she simply reminded me to clean up after myself. Then she asked me to trim the shrubs in the front yard.

I wanted to scream. I didn’t.

I went back up to my room and stomped around some more, ranting about the injustice of it all. But eventually, I let out a long breath, went to the tool shed, grabbed the hedge trimmer, and got the shrubs done.

In these situations, I found that keeping my mouth shut was the most effective way to practice ahimsa, to be non-harming in speech, action, and thought. My silence didn’t just protect my mother; it also shielded me. Did I want my angry words to fly towards my mother? No. Expressing my feelings in the moment might have eased my anger, but could destroy the relationship with my mother. The truth was, I didn’t know how much time I had left with her. There might not be time to repair the harm of angry words.

I practiced ahimsa more intentionally by reviewing The Caregiver’s Bill of Rights that was taped to my desk at home. I recited affirmations from Alzheimer’s 911. One affirmation that resonated with me was: “Being a caregiver is not a waste of time, even if you don’t want to do it.” Those words helped me reframe my role.

On a larger scale, ahimsa involved recognizing the difference between my parents’ needs and my own. I learned to ask myself, “Does the choice I am making include taking care of myself?” I couldn’t always put my needs first, but they had to be part of the equation. You can’t give what you don’t have.

Santosha or contentment, was atypical while I was a caregiver. My mind swept from calm and acceptance to anger and frustration. Now that my parents are gone I can own what I did, mourn what I couldn’t fix, hope I set a good example, and be a resource for others. I am content with how I showed up for my parents. 

Mom died in 2023. I still have the photos of her beautiful garden. I like to imagine her looking out the back window, the scent of peonies and roses wafting up to her. Perhaps she believed she had tended to the garden herself, and that gave her peace. 

Photo credit: New York Times

More BYTA Bytes

The Prison Yoga Project

Healing is most effective when it emerges from within the communities most impacted by systemic oppression. Gabrielle Blue, California Program Manager for the Prison Yoga

READ MORE »

Upcoming Events

Scroll to Top