I first noticed that my mom wasn’t eating solid foods last spring. She ordered some wonton soup and just ate the broth. This was unusual. It used to be that she would eat the wontons first, and leave some of the broth so “she wouldn’t get full.”
It was also unusual when she started turning down my invitations to go out for lunch on Sunday. For the past several years, ever since my dad died, my mom and I would go to lunch on Sundays.
Some people eat to live; my mom is/was in the live to eat club. No food brought her more joy than bread. And her absolute favorite bread was any kind delivered in a basket, by a waiter, in a restaurant.
It didn’t matter whether the bread was pita from her favorite Greek restaurant, Italian or dark pumpernickel, she could singlehandedly eat all the bread in the bread basket. She never had qualms about asking waiters if they could “bring more bread.”
Despite admonitions by everyone else at the table that she wouldn’t have room for her meal, she didn’t care. She stuffed herself silly with the bread, and then asked the waiter for a to-go box for the meal that she wasn’t able to eat.
She hasn’t eaten much bread lately. She hasn’t eaten much at all. That’s because her esophagus is 80% blocked–in part from old age, and in part from a tumor the doctor suspects is cancerous.
It’s taken nearly six months to get her to go to the doctor about this. She insists she doesn’t have a problem swallowing. When we first went to her internist, he declined to order the swallowing test because she told him that she didn’t have any problems swallowing.
“She can’t eat solid foods,” I protested.
“I don’t think she’ll agree to the test,” The doctor replied.
I explained that if I simply told my mother she had a test, she would comply.
In addition to the swallowing issue, my mother has dementia – not the kind of dementia where you get lost walking around the neighborhood. Her dementia is showing up as confusion and as a loss of interest in the world around her.
Besides a one-hour walk that my mother takes each day, she spends her time sitting in a chair, either staring out into space or sleeping. Her conversations consist of ” Boy, it sure is windy out there.” Or, ” It’s a cold one today.”
Other than the weather, she doesn’t have much to say.
So when I brought her to the specialist to conduct the endoscopy, the new doctor was confused and called me into the room.
“Why am I doing this test?” he asked me.
“Because her esophagus is 80% closed.” I responded. Evidently the other doctor’s office had forgotten to send the results of the barium swallow indicating the problem.
“I asked your mom if she has problems swallowing,” he said,” She told me her back hurts.”
“Trust me, she can’t swallow. She hasn’t eaten solid foods in months, ” I said.
He thanked me and did the test. Afterwards, he explained she has three things wrong: a closure at the top of her esophagus, a hiatal hernia, and another closure that he is 75-90% certain is a tumor.
If it is, and it’s cancerous, it is inoperable.
He once again asked her about swallowing. She once again told him she didn’t have a problem swallowing.
He said, “Can you eat a steak?”
My mother looked confused.
I said, “She really doesn’t like steak. Ask her about BLTs.”
The doctor said, “Can you eat a BLT?”
With that, my mother perked up. “I love BLTs!” she said enthusiastically.
Of course, that didn’t answer the question of whether she could actually eat one.
It was at that moment that the finality of it struck me. She’ll never eat a BLT again.
One of my earliest memories is sitting in the kitchen of our apartment in New York, my mother and aunt were assembling a loaf full of BLT sandwiches. I was under the age of three. What I remember is my aunt putting mayo on the bread slices and then stacking them loaf style in prep for the rest of the assembly. The stack of bread seemed so tall.
A moment in time, indelibly imprinted on my memory.
The doctor said he was ordering an immediate CT scan. I explained to my mother that she needed another test to see if she has a tumor. Then I asked if she understood what that meant.
She asked, “Will I need an operation?”
I answered honestly, “No, you won’t need an operation.”
Driving home from the day of testing, I asked how she was feeling. She said fine and then told me how much she liked her gloves. “They are really warm.”
No questions about why she needed a CT Scan, the endoscopy, or the reason she has to see the doctor again next Tuesday.
If she were of sound mind, today would have been a very sad, somewhat terrifying day. The doctor basically said he is 75 -90 % sure she has inoperable cancer.
Her mind cannot process the significance of the situation. And for the first time in a very long time, I think that her dementia is a gift. She is not frightened, or sad. She is doing what she does every day: sitting in her chair, staring out into nothingness.
The phone rings. My mother answers. I can hear the person on the other end asking how her about her doctor’s appointment.
My mother answers, ” We had a lovely day.”
Unable to complete another novel, she had decided instead to write about the years she had spent taking care of her mother, who’d suffered from Alzheimer’s. Now, looking at the pile of pages, she felt a quickening flush of panic at the thought of all her own lost time, the confused mess she’d made of this draft, and the work that still needed to be done to sort it all out. What was she doing wasting precious hours on someone else’s story?