Difficulty in finding words – also known as “brain fog” — started for me 30 years ago after I began taking the medication gabapentin for Complex Regional Pain Syndrome.  While it proves to be an effective drug for me, pulling me out of a ten-year bout of bedridden hell, brain fog was an embarrassing side effect, as I was speaking publicly for HMO reform.

As a spokesperson, having the right word at the right time can make all the difference in “selling” something I’m passionate about. I prayed this troubling symptom would pass as my brain acclimated to gabapentin. It did not.

With time, not only did my brain fog worsen, I started losing thoughts and ideas midsentence. Though I could attribute the word loss symptom to gabapentin, my new challenge was something more, something scarier.

Research taught me that long-term persistent pain leads to neural overload and atrophy, literally shrinking parts of the brain responsible for language and memory. Concurrently, I learned that both gabapentin and the clonazepam that I’d been taking for pain and dissociation for four decades worsen dementia symptoms. That was shocking.

Then in 2014, my mother, a woman grounded in pure love and goodness, but who’d not been herself for a decade, was finally diagnosed with Alzheimer’s disease. Though Mom wasn’t on any pain meds, she’d suffered since her mid-20s with throbbing varicose veins made worse by failed surgeries. She also struggled for most of her life with significant low back pain, often eschewing beds for the hard floor. Later, Mom had hip pain severe enough to provoke screams throughout the day.

I believe my mother’s chronic pain very likely contributed to her dementia development.  She’d been dealt a number of other cards that certainly aided the deterioration of her brain.

By the mid-2010s, there were multiple studies linking trauma to dementia. My mom suffered a tsunami of that from her family of origin, her husband, and some of her children. That trauma produced high levels of toxic stress that led to elevated inflammation, two factors now recognized as drivers of dementia. And she was a woman at an advanced age. Indeed, Mom was a poster child for dementia.

I fear that I may be, too.

Though for me developing dementia often feels inevitable, being at high risk is not a fait accompli. Regardless of my future’s uncertainty, this I know: I’m not going to just wait for the lights to dim. And I’ll be damned if I suffer the way my beautiful mom did.

For Pain Awareness Month in September, For Grace launched its most personal project in our nearly 25-year history. Named for my beloved mom, “Leona’s Legacy” is a safe, online nurturing space where one can learn about the connection between chronic pain and dementia and how to avoid or, at least, slow down the onset of the disease.

For me, cognitive wellness comes in the form of a plant-based diet, abundant exercise, sleep hygiene, daily meditation, meaningful work, ample reading, and creative therapies like piano, singing and writing.

But it’s the last pillar of this project that is most meaningful to me, and the closest to my heart. We at For Grace are working on legislation that, if signed into law, will mitigate financial elder abuse in California.

You see, it wasn’t watching Mom waste away from this wretched disease that was the worst for me. It was what I witnessed during her last ten years, when she lost her capacity for decision-making and was utterly vulnerable to bad players. That’s when she was abused in every way possible by those she loved and thought she could trust.

I know my family’s horror show is far from unique. Elder abuse, in all its forms, is going to become a bigger problem as Boomers age.

Putting a face to the issue, Leona’s Legacy includes touching personal stories from people with pain who have heartbreaking, powerful connections to dementia. Taking a cue from their truth-telling, you’ll also learn about my forthcoming memoir, where I lay bare my family’s multi-generational dysfunction and how I finally broke the trauma cycle for my own survival.

While motivated in part by harm and hurt, the core engine of Leona’s Legacy is the epic love Mom and I shared, unflinching and unbreakable.

I can’t go back and change the abuse she endured, abuse that extended to me, as the family scapegoat, and hastened her death.

But I can still help others in her name.

It is Mom’s enduring love that continues to push me forward, love that will never be forgotten.