First Encounters of the Alzheimer’s Kind

The first time I truly felt the presence of the disease inside my grandmother, I was eleven.

That morning, I ran down the uneven back stairs of our Chicago brick two-flat, as I did most days, and pushed open the back door to her apartment. Immediately something felt different. At the far end of the living room, she was pacing back and forth near the front door, wringing her hands as she occasionally peeked through the white lace curtains as if she were waiting for someone. The behavior was odd and something felt off.

“Abuela, are you okay?” I asked hesitantly. “Are you looking for something?”

She looked around anxiously almost afraid someone would overhear us. She turned to me, her eyes darting around the room: “I’m looking for Chris,” she whispered. “He was here last night.”

Chris? My dad?

She pulled me closer, lowering her voice. “He came in after I was asleep, and last night I went to sleep on the couch so I could wait for him because I knew he had been out with that woman. He came in and he smelled like he had been drinking and you know what he did?  Her voice wavered. Her lips pressed into a firm line. “He kissed me on the mouth!” At this statement her look was incredulous. “And I wiped it off” as she said this, she rubbed the filthy thing off her mouth with her hands. “I said, ‘don’t kiss me after you were kissing that woman!’ I knew he had been over there. He had lipstick on his shirt and I told him to get out!”

I felt  my stomach drop. She was not talking about my dad.

“Abuela…” I asked waveringly, “do you mean… Grandpa was here?”

She nodded solemnly looking directly into my eyes with a certainty that terrified me. Grandpa had been dead for almost a year.

I was scared. I was a child and this was a very adult thing she was telling me, but also there was something about the way she was acting that disturbed my spirit. 

Not long after, my parents sat her down and explained, again, that Grandpa had passed. But the pain of re-learning it was unbearable, so we decided as a family that no one would ever remind her again.

Until that moment I knew she had a disease but because she could get around, talk and act normally, I hadn’t fully understood what Alzheimer's or dementia meant. To be honest, there had been many signs but we tended to ignore or rationalize them. 

A few months later, Abuela ran out of an essential ingredient for her famous tamales in the middle of making a batch.. If tamales were pb&j, she was out of peanut butter. For some reason my dad asked me to accompany her to the store, maybe to keep her safe, or in case I needed to translate between Spanish and English. I was scrawny, a girl, and monolingual in English, but also I was a doormat so I accepted. I remember even then at that age, it made no sense to me why when there were three other adults in the house, I had been asked to go with her on this quest: In those days, she was still picking me up from grammar school. I remember my dad stressing how important it was to find a specific brand of masa, one that Abuela would recognize.

After holding my hand and helping me cross a major street, grandma and I arrived at the grocery store and began feverishly searching for… something. Something, something, what was it? Grandma could not remember what she was looking for. I reminded her that we were there to look for masa, but she assured me that we were not. We walked up and down each aisle with the same urgency with which she paced the floor waiting for grandpa that first time I saw the Alzheimer’s spirit in her. I recognized this had something to do with the disease. Several times I brought her to the refrigerated aisle and introduced her to the masa but every time she said, “No, no, that’s not it”.

Eventually a worker recognized that we needed assistance and Abuela, who normally spoke in English around me, proceeded to speak to both of us in Spanish. I felt so small, having this jerryrigged conversation with a stranger, like a lost looking not-to-be-taken-seriously child, shouldering the adult responsibility of trying to manage and lookout for an older adult who didn’t even know where she was. I could see on his face that he pitied us. We returned home without the masa.

Now, viewing these moments through my grown up eyes, I understand why those introductory instances with the disease were scary.  It was the shift in who Abuela was that caught me off guard. She was a strong woman, with a natural stoicism, and an adult whom I respected. The safety I expected from her steadiness was suddenly shaken in these events. Children rely on adults in order to understand the rules of things in the world. We need adults to put chaos into order and to do it steadfastly. When an adult starts to do and say things that don’t make sense, it’s confusing. The things she would do and say were so off the wall, so out of character, it was profoundly unsettling. 

To be a child living with the challenges of caregiving for someone with Alzheimer’s reversed the natural roles: She became the child and we children became the adults, all too quickly.