Jennifer Merrill holds the hand of her mother, Marie A. Busch, 72, of Edgewater Park, New Jersey. Busch was diagnosed with Lewy body dementia 2 years ago and is cared for by her daughter and her husband, Robert. (Robert Whitman)

My mother’s greatest fear was Alzheimer’s. She got Lewy body dementia, or LBD, instead. This little known, oddly named, debilitating illness afflicts an estimated 1.3 million Americans, the actor and comedian Robin Williams possibly among them. It is often misdiagnosed because its signs, such as hallucinations and body rigidity, do not seem like those of dementia, but in the end it robs people of themselves even more painfully.

I first noticed my mother’s cognitive difficulties when she was 88. Until then, she’d led an extraordinarily active life: She was a competitive golfer with a bureau full of trophies, a painter and a sculptor. Every Hanukkah she hosted a lively feast for her eight grandchildren and nine great-grandchildren. This time, though, she needed my help planning, shopping and cooking. She was having difficulty with the guest list, trying to write every family member’s name on a piece of paper, adding up the numbers to see how many potatoes to buy for latkes. Her concentration became frayed and she kept ripping it up and starting again, close to tears.

Several months before that, she had sent me a Mother’s Day card that was illustrated with childlike prose, colorful illustrations and glitter hearts. The poem on the cover was printed in a playful purple font: “For you, Mom. For kissing my boo-boos, for wiping my face. . . . For calming my fears with your loving embrace.” On Mother’s Day and the rest of the year, Mom added in a shaky script, “thanks.”

The card seemed to say she knew our roles were reversing. She’d prepared for this years before when she made me promise never to put her in a nursing home. The daughter of poor Russian immigrants who came to the United States in the early 1900s, my mother lived in an orphanage during the Depression, from the age of 2 until she was 15. “I grew up as a ward of the state, and I don’t want to end up that way,” she often said.

Diagnosis can be difficult

Until she died at the age of 96, I managed her care long distance, since I live in New York and she lived in Florida. Refusing to consider moving in with me, she stayed in her own apartment. I hired aides who kept her company around the clock, trying their best to keep her safe. I didn’t even know exactly what was wrong with her, other than she was increasingly forgetful and was exhibiting some mood swings. Her doctors treated her generically for dementia, starting with some antipsychotic medication.

The author first noticed cognitive difficulties when her mother, seen here with her sculptures, was 88. (Steve Schulman)

Although LBD is the second-most-common type of dementia after Alzheimer’s, it is often misidentified. It is caused when abnormal protein particles called Lewy bodies (named after Frederic H. Lewy, who discovered them in 1912) accumulate in the brain. Lewy body protein deposits disrupt the brain’s normal functioning.

According to the National Institute of Neurological Disorders and Stroke, LBD has three distinguishing features that eventually become apparent:

●Fluctuating alertness and attention that can resemble delirium.

●Visual hallucinations.

●Parkinson’s-like symptoms, such as balance problems, rigidity and tremors and a flat affect. (Lewy bodies also show up in people with Parkinson’s, though they affect a different area of the brain.)

“Lewy body dementia is characterized by a mixture of symptoms” that can make diagnosis difficult, says Sonja W. Scholz, a at Johns Hopkins Hospital neurologist and researcher who specializes in the illness. LBD patients can typically “have a bad day when they are poorly responsive and confused about time and place,” Scholz says, “and the next day they are their normal self again, able to discuss the plot of their favorite TV show and childhood memories.”

“Most patients develop signs that look like Parkinson’s disease: balance problems, flat affect, rigid muscles, tremor or falls,” she says. Although hallucinations can occur in Alzheimer’s dementia, they are more common in LBD and “can be quite disabling for the patients and upsetting for family members and caregivers.”

William Turner, 68, left, dances the “Twist” with his wife Iva Turner, in Feasterville, Pa. William was diagnosed with LBD in 2009. Iva is his primary caregiver. (Robert Whitman)

Within a year after my mother’s memory problems became noticeable, she suffered from sleep disorders and some muscle stiffness, and she started exhibiting signs of paranoia. She’d call 911 claiming that people were trying to kill her.

Mom believed the sculptures she had created had come alive. One time she nervously showed me two abstract pieces of alabaster prominently displayed in her living room, asking, “Don’t you see them having sex?” I didn’t. Alarmed by her erratic and bizarre behavior, I felt helpless.

“How did I get here?” Mom asked during one visit, as I took more and more time from work and away from my family. “I want to go back to my apartment.”

“You are in your apartment, Mom.”

“This is not my home. I can’t even talk to you anymore.” She was moaning, groping for words. “No one wants me. . . . Take me home,” she begged. “Back to Brooklyn.” Where she had married, raised her children and lived for 30 years before moving to Florida.

I wanted to shake her back into reality, if only I could.

I finally took her to a psychiatrist, who misdiagnosed her with Pick’s disease, another very uncommon form of dementia, and put her on the antidepressant Zoloft, hoping to tone down her agitation.

Yet she became more agitated than ever. Hallucinations and paranoia worsened.

Only later did I discover that people with LDB are much more sensitive to many of the medications prescribed for Alzheimer’s patients. “Occasionally [those meds] can be life-threatening,” Scholz said.

Eventually, I found a doctor who figured it out and put a name to her illness.

“Lewy who?” most people ask when they hear about this awful disease. We were no different. Maybe Robin Williams’s suicide in August, possibly brought on by Lewy hallucinations, along with the death in June of radio personality Casey Kasem, who was suffering from LBD, will change that.

Still ready with a joke

As challenging as it was, I kept my promise and didn’t put my mother in a nursing home. I covered her hands with mittens so she wouldn’t scratch herself from the involuntary, jerky movements that developed a few years after her memory problems surfaced. When my mother turned 95, my 14-year-old daughter and I sang “Happy Birthday” to her and held her hands as she lay in the hospital bed in the bedroom she had shared with my father for 49 years. She’d been a widow for two decades, emerging from my father’s shadow to travel the world and even enjoy several romantic relationships. Yet now she no longer knew who we were.

“Mom. Mom!” I said urgently, trying to get her to open her eyes, which were closed most of the time. “Mom, it’s your daughter. Do you know who I am?”

She shook her head.

I said my name. “Mom, do you know my name?”

“No,” she said.

“What’s your name?”

No answer.

“How old are you?”

“A hundred and forty nine.”

“How old am I?”


It made me laugh.

“Are you making fun of my age?” she asked.

I laughed again. She smiled. It was the last joke we’d share together.

I watched Nellie, her live-in caretaker, crush pills into a bit of applesauce. “Come now, open your mouth,” Nellie said, encouraging my mother to eat, swallow and be medicated.

“Goodbye, Mom.” I bent over to kiss her forehead before rushing out to make a plane home, guilty as usual that I couldn’t be there all the time, fearful as always that this might be my last visit. At this stage, she couldn’t view my tears. “I love you.” No response. “I love you.”

“Yes,” she suddenly said, “I love you.”

Nellie clapped with joy. “And now you can leave,” she said.

I slowly moved toward the door, trying to retain the words of love my mother had uttered — perhaps not to me, but to someone. My mother died in her own bed several months later.

A savored memory

For years I didn’t understand why my mother was constantly fidgeting with her hands. Toward the end, Nellie asked me if she used to knit, observing the way her fingers kept threading each other. “Yes, she did,” I said.

The fidgeting and jerky movements are common with LBD. But I like to think that in her mind she was knitting something for me, as she had done so often when we both were younger. I still have a vest she crocheted for me when I was in high school, an array of colorful boxes. It’s too old-fashioned to wear now, but occasionally I take it out of my closet, admiring her handiwork as I run my fingers across the geometric shapes my mother had once carefully stitched together.

Schulman is an award-winning essayist and writing teacher who has written a memoir about her mother’s illness.