Under the Shadow of Alzheimer's

How do you keep a sunny outlook when both of your parents had dementia -- and you know you're at risk for it too?
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The Battle of Dementia

I never knew what to expect when my mother called. That day she barely said hello before asking in a cheery voice, "How old am I?"

"You're 78," I replied. "Why do you want to know?"

"Ben wants to know." Ben was the gentleman friend my mom had met in her independent living complex in Florida. "He thinks we should get married and wants to know how old I am."

"Why? Does he think you're too young or too old?" I asked.

"Very funny!" she cried, her tone a mix of mirth and faux indignation.

"I hate to burst your bubble," I told her, "but you're already married, and if you get married again you're going to be a bigamist. "

"Oh, that's right," she said, laughing. "And who am I married to?"

"You're married to Daddy," I whined like a great big 46-year-old baby.

My mother was in the early stages of Alzheimer's disease when she called me that day about eight years ago. She didn't always remember that she had a husband, but my father wasn't offended because he didn't know that he was married, either. Diagnosed with dementia at the age of 66, he was now bedridden in a nursing facility in Florida.

Was it my mother's idea to get married, or Ben's? He seemed like a nice man. He was in possession of all of his faculties -- and a car. But did he realize my mother had Alzheimer's? And if so, did he have any idea how difficult it is to live with someone who has it? Devoted caretaking is a huge commitment even after a lifetime of marriage. After a year of acquaintance, I wouldn't expect anyone to be signing up.

My father survived for two more years, during which time my mother's dementia got worse and she moved to assisted living. By the time my father died, my mother and Ben had lost touch and she was even getting foggy about who I was. Her lucid moments were increasingly rare, and she was becoming more difficult, so I decided to move her to an assisted living residence near my home in New York.

My husband, Darryl, and I flew down to Florida, picked up my mom, and accompanied her back to New York. Since she wasn't expected at her new residence until the following morning, she spent the night at our house. She seemed happy to see her grandsons (Austen, who was 18, and Eli, who was 14) but wasn't entirely clear on who they were. Eventually she became restless and agitated, pacing nervously and repeating over and over that she wanted to go "home." I gave her an anti-anxiety pill, as her doctor instructed, which calmed her down until bedtime.

When she couldn't put on her nightgown, I tried to help her. As I eased her blouse over her head, she pushed me and slapped my hands away, yelling, "What the hell do you think you're doing! Leave me alone!"

"I'm just trying to help you get into your nightgown, Mom."

"I can do it myself! Get away from me!"

I was tired and on the verge of tears. "Come on, Mom, let me help you," I said, trying to put the nightgown over her head.

"You're hurting me!" she screamed. "Goddamn you, don't touch me!"

"I'm your daughter. I wouldn't hurt you."

"You're not my daughter! Get away from me!" Tears streamed down my face as she called me names. I realized that my sons could hear the ugly battle.

After I settled Mom down, I went to talk to the boys. When Austen said he didn't know how I could take what had just happened, I explained that it was probably far more upsetting for my mother, who no doubt felt humiliated and confused.

Continued on page 2:  What If I End Up Like Her?


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