I never expected that my mother would have anything in common with Dina Merrill, who died last month, but they both died of Lewy body dementia. Even though LBD is the second most common form of dementia, affecting 1.4 million Americans, most people still say, "Lewy who?"
Public awareness is needed to better identify this illness and research better treatments. After Robin Williams died of LBD, which possibly led to his suicide, his widow described the actor's debilitation, saying, "a terrorist lived inside her husband's brain." Susan Schneider Williams and I helplessly watched our loved ones suffer through baffling signs of cognitive decline, paranoia, hallucinations, tremors and muscle rigidity.
"Men are robbing me! Threatening to kill me!" Mom claimed, calling 911.
"I don't need the walker," she proudly insisted, even though she was increasingly unsteady, in danger of falling.
I didn't realize she was hallucinating until she tried to convince me that one of the sculptures she'd made was having sex. "Come here and watch closely," Mom insisted, leading me to an abstract gray alabaster. It looked like two genetically challenged fish, overlapping and, I supposed, intertwined.
"You think I'm crazy, don't you?" she asked.
"Of course not," I said, unsure.
For ten years, I grappled with a myriad of questions and few answers. Was my mother mentally ill? Why was she losing her balance? Did she have Parkinson's?
My mother was among the most robust women I'd known. Placed in the Hebrew Home for Oprhans before the age of 2 by her poverty-stricken Russian immigrant mother, my mother grew into a stalwart adult. She had no choice, surviving maternal abandonment, bullying and sexual harassment in the orphanage.
She was petite, yet she drove a golf ball yards beyond the men in her foursome at the public course in Dyker Beach, Brooklyn. She knitted handmade sweaters, which I now regret rejecting, preferring instead to look like my teenage classmates in the latest styles from A&S in downtown Brooklyn.
The terrorist moved into her brain at the age of 85. She began to display an array of confusing symptoms whose disease I did not know at the time. Suffering from insomnia and agitation, Mom roamed her apartment, rearranging closets. Sometimes she wandered outside in a nightgown, begging strangers to call the police to rescue her from danger. A social worker advised me to put a lock on the front door, so she couldn't get out. To protect her.
"I'm in prison," my mother wept.
"I'm trying to keep you safe," I gently insisted.
Lewy body dementia is caused by abnormal protein particles that accumulate in the brain, disrupting normal brain functioning. Often misdiagnosed as Alzheimer's or Parkinson's, it is a mysterious illness with no name, no cure.
My mother's textbook symptoms went undiagnosed until a year before she died. Today Susan Schneider Williams is bringing much-needed public awareness, thanks to her late husband's celebrity status. My mother was famous only to me, but I speak at seminars and on radio shows, illuminating the disturbing journey my mother and I went through. Every time a daughter, son, wife or husband tells me, "That's my story too. Now I understand," I am grateful to relieve a tiny bit of their fear and confusion.
It was only in retrospect that I came to realize the true nature of my mother's illness. For years, I didn't understand why she constantly fidgeted with her hands. I'd gaze helplessly at her in the hospital bed with the rails pulled up—once again, trying to keep her safe. At least she no longer knew she was trapped in a illness similar to the one she'd always feared.
Often I didn't know what my mother was thinking, but I watched in curiosity as her fingers kept threading each other. Although I now understand that fidgeting and jerky movements are common in LBD, at the time it reminded me of the way she used to knit. I like to believe that it wasn't only LBD that made my mother thread her fingers. Maybe she was carefully stitching something together for me—a message, or even a handmade sweater. One last gift.