After Grammy has to leave her home for another, she makes clear to Mom—her former caregiver—that she wants to go back to her own. Sometimes, in questions: “When are we going home?” or “When are you taking me back?” or “Is it time to leave yet?” Other times, in foot-stomping declaratives: “I want to go home” and “I’m ready to go back” and “Let’s leave, Mare.”
In the year she lives at Protestant Home, Grammy’s reactions are surprising, but expected. Defense, dismissal, laughter, anger, tears. Nothing ever lasts, though. They vanish moments later, as she moves on to some other topic.
Mom surges through guilt every time she leaves her own mother alone in her new home. I hear her cry her mind to sleep, in her own bed, thinking that, in lucid moments, Grammy will remember this home is not her own, will remember what being scared feels like, will call out her daughter’s name like a child to a mother, only to be met with silence.
Why do the words spill out of my body with such ease when I wake in the middle of the night? It is 4:30 a.m. and I cannot succumb to sleep again until I record my spiraling thoughts. I squint my left eye open and keep my right eye shut (opening both guarantees I’m awake for good), grab my phone from my nightstand, open Notes, and remember.
The three of us are eating lunch at Friendly’s in Bensalem, the cleanest Friendly’s within driving distance of Mayfair. We are a winter or so before The Decision will be made to move her into the dementia unit of Protestant Home (even though we are all Catholic), when the patty melts still taste like greasy nostalgia and the ice cream like the joy of bashing open a piñata. On this Tuesday morning—because lunchtime, to Grammy, starts at 11 a.m.—three generations of women share a booth, order meals, catch up, and laugh as if the world that exists in Grammy’s mind is the same one Mom and I are living in. We talk about nothing, about everything, about how I’m doing in college and how the priests at our parish give crappy homilies nowadays.
Each of us has only eaten half of our sandwiches when Grammy looks at her plate with furrowed brows and sighs, “Hmmm. Kinda weird they only gave me half a tuna melt.”
Mom and I meet eyes, unsure how to respond. How do you in-tact reality to someone whose own is breaking down, slowly deteriorating like stucco cracks forming on a house’s walls?
Before we find the words, she asks, “I ate the other half, didn’t I?”
And when the two of us nod, she laughs a laugh that is so full of hilarity and not shame. We join her and the three of us laugh and laugh and laugh.
Evening, early January, 2013:
“Why am I here?”
“You’re here because you’ve been mixed up about things lately.”
She avoids saying ‘confused’ to not make her mother feel bad as they sit in the waiting room of Nazareth Hospital’s ER, sharing a turkey sandwich for dinner.
Therapeutic fibbing is a tactic recommended by doctors and often used by caregivers to ease the distress a dementia patient typically experiences when presented with a reality different from the one in which their mind lives. In many cases, telling the truth forces the person living with dementia to experience that distress over and over again, even if they might have forgotten their distress five minutes later. But lying also contains its own cruelties: infantilizing the person with dementia even more than the disease already is; blurring the line between reality and fantasy; shaming both the loved one and the caregiver.
I am in the free weight section of the gym when Mom calls. “I think she doesn’t have much time left.”
I want to ask how she knows—how she knows for sure—but my gut reminds me that I’ve never had to question Mom’s intuition. She has always been right about everything.
“Should I come down? I should. See her.” The Lehigh Valley isn’t far from home, and there’s no snow yet, even though it’s early January. I’ve been doing the drive for the past seven years, and know the route like the distance between my enlarged freckles.
“It’s up to you, Laur. She hasn’t opened her eyes for two days and doesn’t really talk. Only opens her mouth to pray, but she’s barely even doing that right now. You might not want to see her like this.” She pauses, waits for me to say something. But I’m silent, unsure of how to fill the empty space. “Maybe it’s better if you don’t, so you can remember her the way you want. The way you should.”
She dies two days later. I never make the drive.
Morning, early January, 2013:
Mom goes to pick up Grammy at her home—her actual one, because she hasn’t yet been physically displaced. Grammy has a foot doctor’s appointment, and Mom is playing chauffeur, having taken Grammy to all of her appointments ever since she stopped driving a decade prior.
When she arrives at Grammy’s house, no one is home.
Mom panics: she has just hung up the phone with her, telling her she’d be over in five. Her mother does not go anywhere without her, always waits until she shows up so they can go together. She shouts “Mom” as she moves from room to room, runs up and down stairs. The house isn’t big: a twin with a kitchen that flows into a dining room that flows into a living room that flows up the stairs to a guest bathroom and three bedrooms with another bathroom that flow down the grey carpet into the living room into the dining room into the kitchen into the concrete-floored basement into the laundry room into the concrete driveway where we used to jump rope into Mom’s car that backs out of the driveway onto Cottman Ave for three blocks until
A woman in a black coat with snow white hair walking toward Roosevelt Boulevard. Mom pulls over, rolls down the window, shouts “Mom” until she has to resort to “Betty.”
Grammy finally looks up. “Oh hey, Mare,” she says so casually.
It is summer 2013 and I am home from graduate school for a few months. This one is unlike every other one that came before because it’s mainly just me and Dad. Mom has been staying over Grammy’s house four to five days, sometimes even a full week if one of her five siblings bail on her. Even though Mom isn’t the oldest, her sisters and brother make her bear the brunt of being Grammy’s live surveillance. Mare lives the closest, they claim. I’ve got something going on this week/this weekend/this month. Can’t you stay there an extra couple days, Mare? You don’t work.
So Mom stays night after night at Grammy’s, taking her to Mass every morning, sharing three meals a day plus dessert with her, watching TV shows on only five channels because Grammy doesn’t have cable, sleeping in Poppy’s old room. Luckily, Mom is a light sleeper—Grammy has recently tried sneaking out of the house without Mom knowing. Mission aborted every time, even when she claims she’s “just going to church,” at 3 a.m.
Tonight, I’m making Dad and I shrimp and scallop scampi with linguine, a big deal because (1) I’ve never cooked for the two of us—Mom always was the main chef in our house; (2) Dad loves scallops; and (3) I rarely eat pasta. But tonight, we want something good, something comforting in our house that feels limbless.
Years later, neither of us will remember what the dish tasted like or if the seafood was chewy or Just Right. But he’ll bring up the memory of the meal in random conversations, asking, “Hey, remember that time you made us scallops?” and I’ll say, “How could I forget?” and we won’t mention that Mom’s chair was vacant, but we still set her a plate.
Years later, there will still be an apology on our tongues.
Evening, post-turkey sandwich, early January, 2013:
CAT scan negative, no sign of stroke.
An hour later: Urinary tract infection.
Grammy’s dementia took her from her home—her body—while she was still alive. It forced me and my family to learn there can be death without dying, and dying without death. I want to write about her without always remembering her forgotten mind. I want to record all the afternoons she and I spent playing Scrabble and Old Maid and Aggravation at her kitchen table. I want to replay the summer Saturdays spent jumping rope in her concrete driveway—one end tied to her chain-link fence, the other wound around one of our wrists and spun in large, generous circles. I want her to take the tea kettle from the stove-top burner (that she still automatically turns off), pour us both mugs full of hot water and cocoa powder, as I set two Stella D’oros—S cookies, we call them—on two napkins. I want her to sneak a $5 bill into my right hand before I leave her house and tell me “go treat yourself.” I want to get in my car parked in that same concrete driveway, backup only halfway and brake, look up at her kitchen window and see curtains drawn aside, her waving goodbye with an invitation to come back, the promise of always returning.
I want to find her sitting in her living room armchair working on a crossword puzzle and have her look up and recognize me as soon as she sees my face. Say my name in affirmation.
Mostly, I want to never forget her smile.
Mom tells me, months after Grammy passes, that she never figured out the best way to respond to Grammy’s desires to return home. Each answer tasted mealy, the way mushy peas sometimes do. Sometimes she lied, she admits, saying it wasn’t time to go, that they should stay a little longer because bingo (!) was scheduled to happen soon and she already signed them both up to play. Other times, she distracted Grammy (easy to do with someone living with dementia), changing the subject or suggesting they get ice cream down the hall, and Grammy never was the kind of person who turned down sweets. On the rare occasion, the truth: “This is where you live now, Mom. This is your new home.”
2 a.m., early January, 2013:
Her mother wonders what the tube in her nose is for.
“Oh okay. Well that affects everybody differently.”
“Mom, it’s air.”
They laugh. A reprieve.
According to the Alzheimer’s Society, urinary tract infections can cause “distressing behavior changes for a person with Alzheimer’s [or dementia]. These changes, referred to as delirium, can develop in as little as one to two days. Symptoms of delirium can range from agitation and restlessness to hallucinations or delusions.”
It is also believed that UTIs can speed up the progression of dementia. Invasion of a home that is already wearing thin.
She’ll have been gone five years this January. I have missed her every day since and I haven’t stopped thinking of her because I refuse my mind its proneness to forgetting, especially when it comes to her.
Today is her 92nd birthday and I actively choose ‘is’ not ‘would have been’ because I like to think that somewhere, she is celebrating and eating S cookies and beating someone at Scrabble and completing a crossword puzzle in a living room armchair.
I text Mom moments after waking and registering the date: “Thinking of Grammy even more today!” to which she tells me something I already knew, without actually knowing: “Me too! Went to Mass this morning in honor of her.” Grammy went to Mass at our parish every. single. day. of her life, made sure to take Eucharist daily after moving into her new home. She sang “O Holy Night” one time while she was getting an MRI, which Mom and I still joke about. In Grammy’s final hours, when Mom was the only one of seven children present and helped ferry her to the other side, she and Mom prayed the rosary over and over, fingering glass beads said to have been blessed by the pope.
I do not go to Mass, nor to the cemetery where she is buried. I haven’t visited her grave since the day of her funeral. To be honest, I don’t want to. Instead, I sing “You Are Mine” over and over that morning like I did the morning of her funeral, graze her old teapot that now sits on display in my apartment like fine china, and take a good, long look at the two photos of her that sit on my bedroom vanity—a makeshift shrine, a daily reminder to preserve moments in the amber of my mind, which I fear will one day dissolve.
In one: one-year-old me sits on her lap, legs dangling between hers, on that ugly brown and orange checkered sofa my aunt used to have. Neither of us look at the camera, which makes me imagine we were naturally this content, not posed into the emotion. I cradle a bottle in my right hand, and my left hand is on top of my platinum, silky blonde head. And yet, it looks like I am really reaching for her chin, which is right above my head, nearly resting on my hand. There is no space between her skin and my skin.
In the other: she is sitting at her kitchen table, the same one we used as a base for our board games. It is her birthday, the last one she celebrated in her own home. She is wearing a light pink polo with an unbuttoned magenta sweater over top. Her pearl-white hair needs a trim—“You’ve got Einstein hair!” we used to tease her. In front of her on the table is a birthday cake made entirely of flowers that match the exact colors of her clothes. The six multi-colored striped candles are not yet lit. She is looking straight into the camera, and I imagine her content in this lucid moment.
Something inside me breaks open.
Afternoon, early January, 2013:
“Where is he?! I need him and I can’t find him! Where is my husband?!”
“Mom, Dad’s been dead for fourteen years. You know this.”
“What?! Nobody told me! I just talked to him yesterday.”
A mother weeps in her daughter’s arms.
The rest of that day becomes the rest of that month becomes the rest of that year becomes the rest of the next two years. Time collapses in on itself, and we all become time travelers, chasing the past, present, and future like children playing tag in the streets.
Laura Brzyski is a fitness and wellness writer for Philly in Motion, and a composition instructor at Philly-area universities. Her creative nonfiction and poetry have been published in Gigantic Sequins, Entropy, Vagabond City, and The Stonecoast Review. She holds an MFA in Creative Writing from Rutgers University-Camden and an MA in English Literature from Lehigh University. She lives in Philadelphia (not a suburb of) with her husband and their dog, Bogey.