It’s only been a few minutes, but I decide I don’t like Darcie. I don’t like how she spells her name (with a star above the “i” on her nametag) or how she is making us wait while she writes. I move aside the fake flowers on the table so I can read what she’s writing. I see:
“Wandering at night”
She’s writing about my grandmother.
A few weeks ago, Grandma fell in her bedroom. She pulled a bookcase down on top of her, breaking several ribs and pushing her further down “the road” than she had been before. It’s given me many long hours in a hospital and touring nursing homes to think about her impact on my life. In my earliest memories of her, we’d watch games together. She’d sit back and prop her feet up, and we’d both listen to Bob Barker sell things on The Price is Right. She’s in her nineties now, still talking too loud in her thick New York accent—you’d almost expect her to pull out a cigarette and start calling you doll.
At the nursing home, a TV is blaring as Darcie (with a star) brings us into the dementia ward, the place where grandma might live. There are two TVs, actually, with patients parked around the screens in a semicircle. “We try to keep them away from the screens, but it’s a busy day today,” Darcie shrugs. A few of the patients look up as we draw near. I feel uncomfortable, as if they’re on show and I’m meant to observe them, compliment the nursing home staff on how clean their nails are. (I was advised, when visiting nursing homes, to look at the patient’s nails—yellow and dirty meant they weren’t being taken care of, clean and painted meant things were better. I’m not close enough to tell.) One of the women sitting nearby holds a baby doll in her lap, bouncing it up and down and cooing to it softly. “They’re all really well taken care of,” Darcie says, and she takes us to see their bedrooms.
The day before, I was alone in the hospital with Grandma and watching her laugh with the nurses. She was better then, able to talk and not pulling out her IVs, which she had been doing before. Still, she wasn’t really sure who I was, and it took her a few minutes to remember that she was in the hospital—a fact she quickly forgot again. I spent the afternoon in loops with her. “Where am I?” she’d ask.
“The hospital Grandma. Remember you fell?”
But a few minutes later, she’ll ask again. After a while I wonder why I ask, “Do you remember?” I want memory to be like a muscle, as if the more she tries to remember the more she’ll be able to. But broken things don’t work like that.
Still, she’s a great hit among the hospital staff. Grandma tells them that she’s going shopping, informs them that bright peach is in fashion again this year, and compliments them on their hair. She’s hilarious. They all wink at me as they help grandma to the bathroom, looping a belt around her so that she won’t fall. She’s completely out of touch with the world around her, but she’s happy enough talking about clothes. I start googling nursing homes.
Darcie swipes her card and punches in a code to unlock and open the door. She’s showing us the garden. “I love to come out here” she says. It’s a beautiful day, summery and bright, especially after the dark curtained rooms of the dementia ward. “Sometimes I’ll just come out here and just meditate.” The plants are all mulched, but they’re dark, the leaves turning up at the edges—they need watering. No one else is out here as we walk the path through the garden, a small paved circle that juts up against a tall dark fence. “Some of them wander,” Darcie explains.
For Grandma, things started to change when I was in high school. She’d start to see things that weren’t there, hear things that were menacing. A few times she came over to our house—she lived just across the road—worried about what she had been experiencing. At dinner we would sometimes hear her whispering to herself, an inaudible murmur that meant she was experiencing some sort of hallucination. “Grandma?” we’d ask, and she’d start, surprised to be brought out of her hallucination. Worst perhaps were the times she would turn on us, shaking her purse and telling us we didn’t love her, that we all talked about her behind her back. The day I graduated from high school, I spent the afternoon at her house, convincing her that I wanted her to be there for the ceremony that night. “You don’t really love me!” she said, which is a line that I’ve pondered over ever since.
Here’s what people mean when they talk about “the road.” When grandma or grandpa can’t live alone anymore, the next step is usually an assisted living situation. With varying degrees of freedom, patients live in an apartment, and can cook their own food and socialize as they will. But there’s a point when these places can’t take care of their patients anymore. They aren’t equipped to handle incontinence, mental health issues, feeding and so on. This is when patients are moved to a nursing home, and begin sleeping in hospital beds. The next step after this is hospice, which I’ve learned is more of a philosophy of care than an actual place. Hospice aims to keep patients comfortable and out of the hospital, dealing more with pain relief than life-altering surgeries. We decide soon after meeting the hospice employees that they are angels, but it turns out Grandma isn’t ready for them yet. She’s able to move around a little bit and is swallowing just fine. I hold Grandma’s hand and tell her she’s going to go instead to a new nursing home—though we haven’t decided which one yet.
“I’ll have a new house?” she says. I decide to indulge her.
“Sure Grandma,” I say. “Some new furniture too.” Which is actually true.
“Well when am I leaving?” she asks.
“You’ll move in a few days.”
Dementia kills many patients by the confusion it causes. As the connections in the brain break down, patients start to wander and fall—breaking bones and causing injuries they don’t recover from. But if this doesn’t happen, dementia tears at the brain until it finally affects the ability to swallow. For a time, patients can be force fed, but eventually they will asphyxiate and pass away. This process, however, can take years, and it’s—as Darcie informs us—”hard to predict when they’ll go.” Now at the end of our tour, she shows us a map of the dementia ward, and circles the rooms most likely to be available first. “He doesn’t have long, we don’t think…the family was in yesterday, you know, because sometimes families want to say goodbye. It’s nice when they do that. This one has a window view.”
We leave carrying informational packets packed with insurance papers and informational pamphlets. We get into the car and then start to head towards the next nursing home on our list. We drive silently down the road.