My mother has Alzheimer’s. It’s a simple, declarative sentence. On any given day, the words pack a wallop akin to a punch in the stomach; leave me with an overwhelming, debilitating sense of frustration, anger and sadness; or make me laugh hysterically. I’m 12 years into this odyssey, so I prefer the days those words can make me laugh. Rare is the day that happens, but one recent Sunday it did.
First, some background. For the last year, my mother has received full-time nursing care in the Alzheimer’s unit at the Washington County Health Center, one of the premier long-term care units in the state. It’s close to home, and I faithfully visit several times a week. More often than not, the experience is not pleasant. My once-poised, quiet and demure mother is usually defiant, combative and angry. At 81 years old and 95 pounds, she’s can’t remember how to hold a spoon, but she can throw and land a right hook.
What’s more, her once-stellar language skills are limited. Gone is her sweet disposition. She has conversations with herself and her long-dead parents in which she plays all of parts. On her feisty days, she’s usually yelling at her caregivers, the nurses, or me. Depending on the day, we are fat, ugly, stupid, ugly, ugly, fat, stupid, or occasionally just plain old dumb. For good measure, she adds emphasis with, “I hate you,” “Don’t come to my house,” “I don’t like you, and my dad doesn’t like you,” and my personal favorite, “I’m not your mother.”
I know in my head and in my heart the words aren’t directed at me, her daughter, but me the person she doesn’t know and never met. My mother has no idea it’s 2012 because Alzheimer’s has robbed her of the last six decades of her life.
In her mind it is circa 1950, and she is still Virginia “Ginger” Lama, the beautiful girl known in her halcyon days as the “Jewel from Newell,” the little town along the Monongahela River where she was raised. She is single, going to dances, safe and secure in her parents’ home. She talks to and about an invisible friend named Eleanor, and she obsesses about white shoes. In her mind, there was no marriage and certainly no children, least of all a son, Mickey, or a daughter, Johnna.
With Alzheimer’s you learn something new every day, and a few weeks ago, I realized that as long as I don’t call my mother “Mom” or “Mommy,” I have a good shot at quality time with her. I try my best to play along with her 1950s version of her reality.
That Sunday was one of those days. She was up, dressed and resting in bed, happy and pleasant when I arrived. I signaled her aide Joanne in code with my eyes and voice. “I’m here to see my friend Virginia Lama,” I said with emphasis on the word friend and using her maiden name. Joanne plays along.
I sit next to the bed and prattle, telling “Virginia” about church, my nagging cold and funny little stories about my week. I talk to her about my house; it was her house, and I describe it in vivid detail, hoping to spark a memory. I get nothing.
She is distracted, as she often is, by concern for her parents. She wants to go see them; she thinks they are nearby and wants me to take her. I tell the lie that really isn’t.
“Your parents are resting,” I say. “But they are in a nice place and Uncle Connie, your brother, he takes care of them.” Her parents are resting at Calvary Cemetery in Coal Center, where they’ve been for more than half a century. Technically, Uncle Connie does take care of them since he visits their graves. “We can’t go see them today, but you’ll see them soon,” I promise. (I pray God lets her see them soon.) We call her brother Connie and he, too, assures her their parents are fine, and he’s taking care of them.
I called my brother in New York and put him on the speaker phone; Mickey understands when I’m speaking in code. He and my mother have always had a special bond, so even though she doesn’t know Mickey’s her son, she likes to hear his voice. He’s a calming influence on her. He’s coming to visit in a few days; that makes her happy.
She had her favorite lunch: two Ensure milkshakes (one strawberry; one vanilla) and a dessert.
After lunch, we moved her to her wheelchair and went for a walk. We visited with other residents and family members who have the same weary look that I have. We went outside and got some fresh air. She even let me do her nails.
We went round and round about her parents, with her wanting to see them and me assuring her that she would see them soon. It was tedious, but not unpleasant. It’s just Alzheimer’s. I make it up as I go along.
As the afternoon wore on, I could tell she was starting to tire. I was no longer a visitor; I was Eleanor, the invisible friend with whom she carries on entire conversations about white shoes and going to a dance.
“I’m not Eleanor,” I said. “My name is Johnna. You’re a nice lady and I like you, so every couple days, I come to visit you.”
“Oh, that’s right,” she said. Seconds later, she called me Eleanor again.
I tried changing tactics ever so slightly, lest I upset her. I purposely did not tell her she’s my mother, fearful I would ruin the first nice visit we’ve had in while.
“I’m not Eleanor. My name is Johnna. You’re a nice lady, and I know you from church, so every couple of days, I come to visit you.”
“That’s right, I remember,” she said. Seconds later, she called me Eleanor again.
The third time’s a charm.
“I’m not Eleanor,” I said. “My name is Johnna. I just told you that. I like you, so I come to visit you.”
She smiled and grabbed my hand.
“Oh, I’m so glad you came to visit me,” she said. “I never see that daughter of mine.”
It’s Alzheimer’s. The jokes just write themselves.
Johnna A. Pro is Pittsburgh-based writer and media personality who began her career at the Observer-Reporter. She lives in Charleroi and can be reached via email at firstname.lastname@example.org.