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06/29/2014 08:54 am ET Updated Aug 19, 2014

The Little-Known Aging Illness That Needs More Awareness

When the legendary radio personality Casey Kasem died, his obituary said he'd suffered from Lewy Body disease. "Lewy-what?" most people wondered. But I knew first-hand, watching my mother decline from this little-known, but most common, type of progressive dementia after Alzheimer's.

"It walks like Parkinson's and talks like Alzheimer's," Angela Taylor, Program Director of the Lewy Body Dementia Association, told me. Accounting for 20 percent of dementia cases, it's been called "Parkenheimer's." Lewy Body Dementia's public awareness is where Alzheimer's was 40 years ago.

Before she was diagnosed, my mother's agitation caused her to hallucinate and call 911, claiming people were trying to kill her. She thought the sculptures she had created were alive. Nervously, she showed me two abstract pieces of alabaster, asking, "Don't you see them having sex?"

I didn't. Frustrated, because I didn't know how to help her, I covered her hands with mittens so she wouldn't scratch herself from the involuntary, jerky movements caused by this cross between Alzheimer's and Parkinson's.

My mother made me promise never to put her in a nursing home. The daughter of a poor Russian immigrant during the Great Depression, she lived in an orphanage from the age of 2 until 15.

"I grew up as a ward of the state, and I don't want to end up that way," she often said.

She wouldn't even consider moving into my two-bedroom apartment with my husband, daughter, and me. "My mother told me two women should never share the same kitchen," she insisted.

For five years I managed her care 1,500 miles away, searching for solutions and hiring aides round the clock.

"She needs more medication," Maria, her part-time aide, said.

Nina the social worker said, "She called Maria a dog. She puts her hands over her face and gets angry when someone tries to take her arm so she won't fall. The aides say her behavior is terrible."

"She has an illness," I said. "You make it sound like it's my mother's fault."

"She has to use the walker. Or she'll fall -- and then you'll have real problems."

One morning the phone rang at 7 a.m.. Maria said, "She wants to go to temple, but she won't let me go inside and sit with her."

"She won't wear any of my suit jackets," mom explained. "She can't go to temple in a t-shirt." A 94-year-old woman trying to make her aide wear her jacket sounded, well, demented. But if you dove beneath the surface and solved the puzzle, it made perfect sense: an elderly woman with a reverence for religious observance, felt strongly that the person sitting next to her in temple should be dressed appropriately.

"Mom, people can go to temple in t-shirts now."

"They can? I'll pray for you. I'll pray for everyone."

"And you have to use the walker."

"I won't."

"You'll end up with a broken hip."

"You're saying you think I'm going to fall. I'll just stay home!... No, I want to see my grandchildren..."

"Let Maria help you."

"I don't want her to touch me."

Who could blame her? A stranger in the shower with her.

"How did I get here?" mom asked. "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 18th Street."

"You never lived on 18th Street."

"Ohhhhh..." Wails of pain.

I felt like shaking her back into reality, if only I could.

"Mom, if you don't use the walker... you'll have to go to a nursing home," I blurted, immediately sorry for what I said.

"You're making me too upset."

She hung up.

Some days I coped better than others.

She threatened to commit suicide. Had I been too forceful about the walker? If the aides quit because of her so-called "terrible behavior," I'd have no choice but to move her into a home.

I took her to a psychiatrist, who said my mother had Picks Disease and put her on Zoloft, hoping to tone down her agitation.

"Are there side effects?" I asked.

"No contraindications." His voice was deep and crisp. "Sometimes there are sexual side effects... but we don't have to be concerned about that." He delivered this line deadpan.

I researched Picks Disease; only diagnosable through autopsy; perhaps genetically inherited. The end was a permanent vegetative state. My husband told me to stop reading so much.

Mom wasn't correctly diagnosed until it was too late to try medications that might have relieved her extreme discomfort. Bedridden with a broken hip, she constantly fidgeted with her hands.

Her live-in aide Nellie asked if she used to knit, observing the way her fingers kept threading each other.

"Yes," I said, "but I believe it's part of her illness."

My mother's diagnosis of Lewy Body Dementia came too late to help her, but I hope others can find some relief. Perhaps mom was knitting something to take with her, or a parting gift to me. I still have a vest she crocheted for me in high school with 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.

Earlier on Huff/Post50:

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