Downstairs, Upstairs and In Between - Journeying Into Dementia
Years ago I volunteered at a nearby assisted living facility, spending a few hours each week with sixty seniors. I read the newspaper aloud to them in the morning. We discussed current events and watched movies. I called BINGO, paying out a quarter to each elated winner. I ate lunch with them, played Scrabble and UNO, and sat beside them while local musicians serenaded us.
Being that I am a storyteller by trade, I especially loved hearing about their past lives. Roxanne* and her brain surgeon husband helped found the Vermont Youth Orchestra in 1964. Fred was a Seabee during WWII. Louis practiced law in New York City for five decades. Gillian was an assistant to former Vermont governor Madeline Kunin. Margaret taught German literature at a New York State University.
I felt a particular fondness for Josephine, who had been an army officer. After her discharge Josephine battled depression and alcoholism. She kicked both, but lost her marriage in the process. Josephine had a gruff demeanor and was not prone to socializing, but whenever she did join an activity, she was the brightest most loquacious soul in the room.
Whenever I visited the facility, I would traipse down the long hallway to her large sunny room and knock.
“Yes? Who’s there?” she’d ask.
“It’s Lisa, Josephine. I’m wondering if perhaps you would like to read the paper with me today.”
Moments later she’d open the door, genuinely pleased to see me. “Of course I would. Thank you for inviting me.”
And so it went — the same knock, the same invitation, the same acceptance, over and over again. Until one morning she said no.
“Really?” I asked.
“My stomach feels bad. I think I need to stay close to my bathroom.”
“Gotcha,” I replied. “Next time then.”
But there was no next time. Josephine continued to “feel” sick, although she was perfectly healthy. She grew more confused and doleful, and was eventually transferred
Before entering the locked memory care wing on the top floor of the facility, I punch in a 4-digit key code.
I walk in and immediately the air changes. It slows. It thickens. It smells yeasty. I pass by the caged bird, donated by a relative who believes animals are soothing for people with dementia, and all of the residents up here are afflicted with severe dementia. Most have late-stage Alzheimer’s disease.
I glance at the impressive artwork on the wall. Two of the pieces were painted by Francis, one of the residents. She painted them before her brain could no longer distinguish one color from another. Before she forgot how to hold a paintbrush in her hand.
Breakfast is just ending so I go down to the dining room and shout a spirited “good morning” to everyone. I feel genuinely gratified when Leon says, “hello,” or when Margery waves her napkin at me.
As I grab a slice of bacon off the warming tray, Amina, the lovely Bosnian LPN asks me if I would pay Eva a visit. “She’s in a bad mood,” Amina says, concerned. “You always cheer her up.”
The door is slightly ajar and I can see Eva, a still-beautiful, poised woman in her eighties, sitting on her bed, a look of panic on her face.
“Good morning, Eva,” I say, knocking. “Do you mind if I come in?”
She immediately brightens. “Yes, yes. Please.” She has no idea who I am, but she politely gestures me to the chair across from the bed. The room is tiny, cramped, but tastefully furnished. Eva comes from money — a lot of it. I know this because every time I visit Eva she invites me to look through her photo albums. After twenty times, I have all but memorized the pictures of her family’s lavish home on the beach, her many trips abroad, the cotillions where she danced in dresses made for a princess.
Unlike me, Eva no longer has them memorized. She barely recognizes the people in them. She is aware that the memories belong to her — she just doesn’t understand how they do. That’s what Alzheimer’s does to the brain — it robs one’s connection to the past; those precious personal stories that make up the very essence of social beings. Eventually, Alzheimer’s will probably purloin Eva’s ability to communicate altogether. She is one of only three people here who can still string words together into complete sentences.
Today, Eva is agitated. Before I reach the chair she jumps up and announces that she needs to find her purse.
“Why?” I ask gently.
“I have to get to the train station,” she says hurriedly. “I promised my mother I’d meet her there and she’ll be angry if I am late.”
As I reach out to take her hand in mine, I understand that Eva’s thoughts are no longer securely bolted to her past. Nor is her damaged brain allowing them to make much sense of the present. It’s as if she’s frozen in a liminal state; a timeless and incoherent
My mother, who has recently begun a slow steady slide into dementia, started to see her own mother in bed with her every night. Having delusions is highly typical of someone with cognitive impairment.
Initially, the mirages my mother saw were innocuous. My dead grandmother. The red flowering bush across the lake appeared to her as a tall woman playing with her grandson. The rock outside her kitchen door morphed into a dead dog whose dog friends often came to mourn him. One always showed up wearing a bow.
But then last week something in her hallucinations shifted. They became scorched by paranoia — again, quite common in early-stage Alzheimer’s. My father — the ex-spouse she’s hated for thirty years — started breaking in.
“He left his empty cereal bowl on the kitchen table, so I know he was here!” she shouted into the phone. “I’m calling the police.”
I tried to stop her, but I live in Vermont and she lives in Florida and my arms can’t reach that far. Her home companion — an amiable, soothing woman named Pamela — also failed to calm her fears. Mom phoned the police, who came and took a report. Afterward, at her desperate urging, I hired a locksmith to change the locks on her door.
My father did not show up the next day, and we all breathed a sigh of relief. But for the last two nights now, three teenagers have broken in through the lanai, stealing a bottle of wine before exiting through the front door. When she told me about the robberies, she sounded more annoyed than frightened, as if it were a burden she could live with.
In addition to becoming delusional, she’s also losing all sense of time. Dates mean nothing to her. Numbers are often foreign objects. She can no longer read a book, a deprivation that has amplified her ever-growing depression.
She’s still very talkative, particularly when it comes to politics: the vitriol she hurls toward our President is as keen and biting as ever. She remembers names and has no problem recognizing faces. She can regale a listener with stories from her past as easily as a teenager can. While she is, in a sense, fully independent at the moment, I anticipate a time in the not-too-distant future when she’ll no longer be able to stay in her own home.
How and when will I know it’s the right time to move her into a facility; one where she can be safe? One where someone will read to her? One where no one will steal her wine?
One that has both a downstairs and an upstairs.
*Names have been changed.
About the author ~
Lisa Kusel is the author of two novels, as well as RASH, her recently-published memoir about running away to Bali. Her poems and essays have appeared in The Mondegreen, The Manifest-Station, Women Writers, Women’s Books, Motherly, and Purple Clover.