Women's Health

I donate my brain to science after my mother has dementia



June is Alzheimer’s and Brain Month.

As said to Nicole Audrey Spector

“Why would you give your brain to science? »

It’s a question I’ve been asked a lot since I decided to donate my brain to science. The answer? It starts with love.

In my case, it is my love for the 13 women (both on my mother’s side and on my father’s side) whose lives have been devastated by dementia.

Losing so many important people to this excruciating disease was painful to say the least, but losing my mother to dementia was the cruellest loss of all. My mother was an intelligent and outgoing person. She was the type to befriend strangers in the supermarket queue. She loved people, and they loved her back.

But everything changed when she was about 70 years old. She became quick to anger and confusion. One time I was filling out paperwork with her and asked her for her social security number. She interrupted the conversation and started rummaging through her purse.

“Mom, you know it’s not safe to keep your social security card in your purse,” I said.

His eyes flashed anger at me. I immediately learned that no matter how old you are, you should never scold your mother.

My mom had clearly forgotten her social security number – and maybe even where she put her social security card. In years to come, that wouldn’t be all she would forget. She would end up forgetting where she lived, that her husband was dead and that her parents had been gone for decades. She forgot to buy food and forgot to eat.

My mother, like so many other women in my family, suffered from vascular dementia. The condition had developed after a series of small blows. She had no history of smoking or diabetes (which can increase the risk of stroke) and had been an athlete all her life.

Even as her symptoms worsened, my mother continued to staunchly deny that anything was wrong, and she became upset when one of us expressed concern about her deteriorating mind. She didn’t want to lose her independence. Which does? Her fear could make her manipulative and mean. Dementia took her away from her community. Each of her dearest friends wondered, “What did I do to make her hate me?”

I was beginning to miss my mother – the funny, graceful woman who could easily beat you at bridge and swim around you. She was tragically disappearing.

Lauren’s mother, Grace, 2012

And none of us could do anything to stop its decline. Doctors were in the same boat. It was just a matter of waiting until things got so bad that my sisters and I had to step in and get him into an assisted living facility. We had to be the bad guys.

Dementia can last a very long time. My mother lived to be 89. She has spent the last five years of her life quiet and still – a breathing relic of a human being.

It pains me that my children’s memories of their grandmother are mostly made up of the worst phase of her life. I wish they could remember the first 70 years of his life, rather than the humiliating last chapter.

When I became a grandmother myself, the dementia suffered by my mother and many other members of my family particularly affected me. Holding my precious 6 week old granddaughter, I felt like I was in the crosshairs of this disease. I wondered how my own final chapter in life would read. Was there really nothing I could do to help change the course of the future women in my family?

One day I was in the car listening to an NPR special about the desperate need for research brains in all areas of study, including Alzheimer’s and dementia, Parkinson’s, l autism and concussions. I found out that brain banks had been set up all over the country and heard about the Brain Donor Project. I was also surprised to learn that checking the “organ donor” box on your driver’s license does not make your brain available when you die.

I knew right away that I wanted to donate my brain – sick or not – in the hope that it might help advance the understanding of dementia. I filled out an application on the Brain Donor Project website and submitted it. I quickly received an acceptance letter and a 24/7 phone number for my family to call after I passed away. The brain bank will coordinate the transportation of my body to the local hospital and provide a recovery specialist to remove my brain and arrange to ship it to the nearest facility. This whole procedure is provided free of charge to my family. Immediately after Brian’s extraction, my body will be returned to my family for burial or cremation.

I don’t think giving my brain to science is a great act of altruism or sacrifice. What will I use my brain for when I’m dead? Everything will be off by then. If there is something after this life, my brain, like all my other organs, will not need to experience it.

There is something particularly interesting for me to talk about all this at the dawn of ChatGPT and the societal questioning of how far AI technology will go and what it can take from us. It’s interesting because I don’t necessarily think it’s the artificial brain that should amaze us, it’s the human brain.

I hope other people, with or without a history of brain disease, will also consider brain donation. It won’t hurt anyone, but it could potentially help many by enriching scientific understanding of this most powerful and mysterious part of us.

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Our Real Women, Real Stories are the authentic experiences of real women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect official HealthyWomen policy or position.

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