Since my decision to donate my brain for science, this question has come up often. My answer: it begins with love.

At least in my case, it is my love for 13 women (on both my mother’s and father’s sides) whose lives have been devastated by dementia.

Losing so many loved ones to this debilitating disease has been deeply heartbreaking, and my mother’s loss from dementia was particularly heartbreaking. She was an intelligent and outgoing woman; often making friends in line at supermarket checkouts. People loved her, as did she.

But things changed drastically when she reached 70. She became more easily angered and confused. I recall once filling out paperwork with her when I asked for her Social Security number; instead of responding she stopped speaking entirely and started searching through her purse!

“Mom, it isn’t safe for your Social Security card to remain in your purse,” I informed her.

She looked directly at me with anger-filled eyes. At that moment, I knew: no matter your age or status in life, one must never scold their mother.

My mother had long since forgotten her Social Security number — and where to locate it. Over time, this wouldn’t be all she’d forget: where she lived, that her husband had died years earlier, that both sets of parents had long since passed on and forgetting to purchase food or eat herself were all likely on her list of forgotten memories.

My mom, like so many women in my family, suffered from vascular dementia. This condition resulted from several small strokes she experienced over time – she never smoked nor had diabetes (both factors known to increase the risk for strokes), nor was she an athlete, yet still experienced stroke-like symptoms.

Even as her symptoms worsened, my mom maintained strong denial that anything was amiss; any time one of us expressed worry over her deteriorating mind, she became upset. Nobody wants to lose their independence; fear made her manipulative and spiteful towards friends; dementia left many feeling alienated from each other – leaving each dearest one wondering “What did I do to make her dislike me?.”

My mother — the kind, funny and generous person I knew when we were growing up together — seemed to have vanished into thin air. It was heartbreaking.

There was nothing any of us could do to stop her decline; doctors too had no power. All that could be done was wait until it reached such a critical state that my sisters and I had to intervene and move her into an assisted living facility – we had to be the ones to bring in help for her care.

Dementia can be an agonisingly slow progression. My mother lived to be 89 and spent the final five years of her life silent and immobile — an extinct entity still breathing life into this mortal coil.

My children’s memories of their grandmother are mostly focused on her worst stages in life, rather than recalling the joyful first seven decades that came before the painful last chapter. It saddens me greatly that their memories of her are limited to this last phase.

Once I became a grandmother myself, the dementia that my mother and other family members had suffered hit particularly close to home. Holding my 6-week-old granddaughter close, it hit home that this disease might claim my own last chapter. Was there nothing I could do to influence future women within my family tree?

One day while driving my car I heard an NPR special about the increasing need for brains for research into Alzheimer’s and dementia, Parkinsons, autism and concussion. Brain banks have been established throughout the country as part of The Brain Donor Project; I was also shocked to learn that ticking “organ donor” boxes on driver licenses does not ensure your organs would become available after death.

I knew right away that I wanted to donate my brain, no matter its condition, in hopes that it could further our understanding of dementia. So I submitted an application on the Brain Donor Project website and quickly received an acceptance letter as well as an all-hours phone number so my family can contact it after my death. Once my body arrives at a local hospital for brain extraction, they’ll provide transportation along with recovery specialist who’ll remove my brain for shipping offsite – all at no cost to my family – before returning it immediately post-extraction for burial or cremation.

Donating my brain to science does not represent any great act of altruism or sacrifice on my part; in reality, once dead my entire mind will become useless to me; should there be life beyond this life, my organs won’t need me any longer in order to experience whatever may await us all.

Talking about this subject matter now, with ChatGPT being introduced and society questioning AI technology’s future applications is especially intriguing to me; I find it fascinating that we shouldn’t necessarily fear artificial brains so much but rather embrace our human ones with respect.

Hopeful of getting more people thinking about brain donation as it won’t harm anyone and could potentially help many by deepening scientific understanding of our most powerful and mysterious organ.

Do you have an experience that embodies “Real Women, Real Stories?” Let us know! We welcome it all with open arms.

Real Women, Real Stories are authentic accounts from real-life women that do not reflect or represent the official policy or position of HealthyWomen.


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