Lauren Wilson’s Story: For the Women in My Life

I think brain donation always starts with a person you love, doesn’t it?

My story is about THIRTEEN women I love. I’ll start with my mother.

When I first realized something was truly wrong, I was visiting my folks as my dad was dying of cancer. Once he passed away, I stayed to help Mom (Grace, left) adjust to living alone. I was filling out some paperwork with her seated at the kitchen table. I asked, “Mom, what’s your Social Security number?”

She looked up from her word search puzzle.  “5-5…”  She halted.  “5-5…” she began again.  She picked up her purse and began unzipping pouches, fumbling through too many receipts and Kleenexes. “Hey,” I said. “You know it’s not safe to be carrying your Social Security card around in your purse!” Her chin shot up and she fixed me with a cruel glare. Children (even 50-year-old ones) are NOT allowed to scold their mother.

This was to become the common reaction from Mom, towards me, and towards any other caregivers in the many months and years ahead. Confusion followed by anger. Confusion and anger.  Until finally she had no reaction at all.

The diagnosis was vascular dementia–brain damage caused by many small strokes. She had never smoked, didn’t have diabetes, was a lifelong athlete with a busy social life. But even though she had played in two weekly bridge clubs, she stopped recognizing a good hand of cards. She had handled the budget for a high school for 30 years, but now was stumped by elementary problems like 8 takeaway 5. She forgot where she was going, or where she had parked her car. She refused to understand that her husband had died, or even that her parents had been gone for three decades. Over the next ten years Mom regressed from confusion and anger to immobility and silence. We didn’t know what was going on inside her head, and neither did the doctors. They could predict her decline, but didn’t know how to stop it.

I must say that this regression wasn’t totally foreign to me. Both of my grandmothers had engaged in “crazy talk” for a few years before their deaths in nursing homes. My father’s three sisters all told weird stories and showed confusion about simple things as their lives ended. My mother’s only sister died demented in a nursing home. My grandfathers, father, and uncles met other fates, but their minds were all sharp ‘til the end. Why is that?  The exceptional women of my family:  a school board chairwoman, a real estate agent, a teacher, a golf champion, mothers who raised a total of 29 children…their accomplishments were overshadowed and their final years were spent bewildered.

My motives may be purely selfish. I have two younger sisters. And two daughters, and two granddaughters. Last month, as I held my daughter’s 6-week-old little girl for the first time, I must admit the thought crossed my mind–what lies ahead for all of us if science and medicine don’t learn more about dementia? I discovered that checking the organ donor box on your driver’s license doesn’t include providing brain tissue for study…they can’t look into your head while you’re still alive. That is why I filled out the paperwork to donate my brain.