Gluten-Free, and Other Lies We Sometimes Have to Tell

**Disclosure: My mother does NOT have a wheat allergy**

Photo by Giorgio Trovato on Unsplash

Last night, I stopped by my mom’s nursing facility to see if I could help her do some online Christmas shopping. I was a little surprised not to find her in the TV room with her best friend. He said he hadn’t seen her since the night before, when she rode in the shuttle with a group to go see some Christmas lights. He missed seeing her all day yesterday, hoped she would get up soon.

I found her in her room. Most days, she’s up and out, in her wheelchair in the TV room with her buddy or avoiding the activities staff who offend her by offering BINGO. Too much time alone in her room and her dementia clouds easily with delirium. Maintaining her best possible mental state requires an alchemy of social interaction and good sleep at night.

Mom was in her bed, wearing a green Christmas sweater, her uneaten lunch—PB&J on white bread—sitting untouched on her tray. Some angel food cake had been picked at. Her eyes were closed at first but she smiled when she saw me.

She told me how her back hurt after having been jostled in the shuttle the night before. I went to ask for some Tylenol. When I came back with an aide and mentioned Mom’s friend was looking for her, she decided she was willing to get out of bed.

She has a gentle dementia, soft as her nature. Most of the time, she simply draws goofy connections. She often gets my name wrong but knows I’m her daughter. She forgot my father died for the better part of a year, then snapped in with a couple of weeks of clarity, asking if we had a funeral (yes, she attended), where he was buried, if new people were living in their old house. As much as these practical questions raised notes of pity in my chest—we’d kept her apprised all along but she lost that time—her ability to ask practical questions was a flash of my former mother. Curious. Attached enough to the world to engage with its details.

I kept telling myself not to hope that her reemergence from the fog might be a new normal. Maybe she’d just been in shock after my father’s death a year and a half ago. Maybe some of her being mixed up was emotional, not neurologic.

The flash connecting her back to this time faded though.

Two weeks ago, she announced at brunch that she is a vegetarian, “have been for years.” I chuckled, thinking she was toying with me. I remembered my mother’s frustration when I tried and failed to cut out meat as a teenager. She couldn’t fathom a meal not centered around some brown hunk of animal. I got incredibly anemic because in a meat-and-potatoes house, I lived on potatoes and pasta. Once I moved out, I figured out how to have a balanced vegetarian diet and have stuck with it for a quarter century, but she’d grown up on a farm, fully comfortable with the circle of life ending up on her plate.

She told me the staff keeps trying to feed her chicken and other such no-no’s. “I told them, I. Don’t. Eat. Meat.” Her tone, those words, mirrored the insistent refusals of my teen years. It was as if memory of my words had become her new script.

Last night, once she was up and out of bed, we went to the dining hall for dinner. Almost as soon as she pulled up to her regular table with “the girls,” a PB&J on white bread appeared before her.

My normally docile mother flushed, and she barked at the aide who brought her food, “I cannot eat WHEAT!”

“Yes, your favorite, on white,” the aide said.

“I cannot eat wheat,” my mom insisted. “I’m allergic.”

The aide smiled, confused. “Do you want whole wheat?”

“No, no, no wheat!” Mom started to really yell.

“White bread is wheat,” the aide started.

“NO. NO WHEAT!” She was really hot now. A nurse came over, as did another aide and the activities staff. In the blur, someone offered me a chair, because I’d scrunched down awkwardly at Mom’s side to try to calm her. Everyone somehow thought she was demanding wheat while she was rejecting it.

Mom’s voice can be garbled. We have the same neurological condition, dystonia, and while my voice has the occasional break and pop, Mom’s is 40 years along and full of scratches and less control over her tongue. I looked at her neighbor’s dinner for an alternative idea and suggested we order soup.

“I can’t eat soup!” she said in complete exasperation. “The way my hands shake!”

“Ah, I know. I know, Mom.” My hands shake a bit too.

Finally, one aide bent at Mom’s other side and said very quietly, “I’ll get rid of this Lois. You tell me what you want—anything—and I’ll get it.”

Now heard, my mother drew a breath. “I’m allergic to wheat.” This was news, because for the past year and a half at this facility, she’s been loving sandwiches and pasta, cake and cookies, but leaning heavily on PB&J since she’d suddenly gone meat-free. I shook my head behind my mother.

The aide said, “You want brown bread? No wheat?”

Mom exhaled. She nodded. Finally, she’d gotten through to someone.

I felt myself wanting to reason with my mother. I started my next sentence the way any family member of someone with dementia is coached not to, “Mom, do you remember…” I told her how her doctor had guessed she had a wheat allergy decades ago because they didn’t know about dystonia. It was an absurd stab in the dark, as many diagnoses are when a person has a rare disorder. “The doctor, he meant well. He just didn’t know,” I said. I reminded her that she’d been eating wheat with no problem for decades.

“Who told you that?” she said, shocked.