Losing many women in my family to dementia inspired me to donate my brain to science

Losing many women in my family to dementia inspired me to donate my brain to science

June is Alzheimer’s and brain awareness month.

As told to Nicole Audrey Spector

“Why should you donate your brain to science?”

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

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

Losing so many important people to this heartbreaking disease was heartbreaking 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 who would make friends with strangers in the checkout line at the supermarket. She loved people and they loved her back.

But that all changed when she was in her 70s. She quickly became angry and confused. One time I was doing some paperwork with her and I asked her for her Social Security number. She broke off 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 at me with anger. I quickly learned that no matter how old you are, you never have to scold your mother.

My mother had clearly forgotten her Social Security number and possibly where she had put her Social Security card as well. In the years to come, that wouldn’t be all that she would forget. She would keep forgetting where she lived, that her husband had died, and that her parents had been gone for decades. She forgot to buy food and forgot to eat.

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

Even as her symptoms worsened, my mother continued to steadfastly deny anything was wrong and became angry when any of us expressed concern about her mental deterioration. She didn’t want to lose her independence. Who does? Fear of her could make her manipulative and mean. Her dementia has alienated her from her community. Each of her closest friends was left wondering, “What have I done to make me hate you?”

I began to miss my mom, the funny, kind woman who could easily beat you at a game of bridge and swim around you. She was tragically fading.

Lauren’s mother Grace, 2012

And there was nothing either of us could do to halt its decline. Doctors were in the same boat. It was just a matter of waiting for things to get so bad that my sisters and I had to step in and get her to an assisted living facility. We had to be the bad guys.

Dementia can be tortuously long. My mother lived to be 89 years old. She spent the last five years of her life silent and still, a breathing relic of a human being.

It pains me that my children’s memories of their grandmother consist mostly of her worst phase of life. I wish they could remember the first 70 years of her life, rather than her humbling final chapter.

When I became a grandmother myself, the dementia that my mother and many other family members had suffered hit me especially hard. Holding my precious 6 week old granddaughter, I felt in the crosshairs of this disease. I wondered how she would read my last chapter of her life. Was there really nothing I could do to help change the course of future women in my family?

One day I was in my car listening to an NPR special about the desperate need for brains for research in all areas of study, including Alzheimer’s disease and dementia, Parkinson’s, autism and concussion. I found out that brain banks were being set up all over the country and learned about the Brain donor project. I was also surprised to learn that checking the “organ donor” box on your driver’s license doesn’t make your brain available when you die.

I quickly realized that I wanted to donate my brain, diseased or otherwise, in the hope that it could help advance the understanding of dementia. I filled out an application on the Brain Donor Project website and submitted it. I soon received a letter of acceptance and an all-hours phone number for my family to call upon my death. The brain bank will coordinate transportation of my body to the local hospital and provide a recovery specialist who will remove my brain and arrange for shipment to the nearest facility. The entire procedure is provided at no cost to my family. Immediately following Brian’s extraction, my body will be returned to my family for burial or cremation.

I don’t think donating my brain to science is a great act of altruism or sacrifice. What use will I have of my brain when I’m dead? The whole thing will be closed by then. If there is something after this life, my brain, like all of my other organs, won’t be needed to experience it.

There’s something especially interesting to me about talking about all of this between the dawn of ChatGPT and society’s questioning of how far AI technology will go and what it might take away from us. It’s interesting because I don’t necessarily think it’s the artificial brain that we should be so afraid of: it’s the human one.

I hope that 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 the understanding of science for this most powerful and mysterious part of us.

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