by Susanna Baird
I am 51 years old and I am curled in a ball at the foot of my parents’ bed at The Oaks. My father, who has a reflux cough, is mostly sleeping but sometimes swearing about his god-damned cough. My mother is sleeping too, in four-minute stretches. She spends her fifth minutes anxious, often asking for me. I am here, I say, patting her. Right here on the bed. The dog is here too, snoring and not offering me any of his considerable real estate.
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Earlier today I drew a plus sign in black Sharpie on my left wrist, a button reminding me to recharge, to reframe situations to allow energy in. When I get overwhelmed, I go long and loud. I whine, I stress-text, I rant. Sometimes I get so fired up my listeners flinch. I don’t want to be this person. I’m especially this person at The Oaks.
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In the book Coraline, Coraline walks through a forbidden door and discovers Other Mother and Other Father. Walking into The Oaks, my parents’ senior living community, I find my own. They look like my mother and my father, but Alzheimer’s has rendered them Other. Other Mother, O. Mo., Omo. Other Father, O.Fa, Ofa.
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The Functional Staging Assessment Tool, or FAST, measures the progression of Alzheimer’s Disease. There are 7 stages, some divided into substages. In the very last substage of the very last stage, substage 7F, wherein F stands for Fucked, a person cannot sit. A person cannot hold their head up. A person cannot smile. I do not want Omo and Ofa to live to stage 7F.
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Ofa is at stage four: Decreased ability to perform complex tasks; signs of cognitive impairment are glaringly evident. Ofa is losing his logic along with his memory. He can’t discern an advertisement flier from a real correspondence. One thing I rant about are the ways capitalistic companies prey on the elderly. Or I did before I was marked by the Plus. Now I just rip up the letters — “we don’t need these” — and I move on.
Ofa likes doing the bills with me. Often he manages to pay them without me. Ofa still has a good appetite, but he can’t remember to order the food that The Oaks will deliver. He can’t always remember dates or plans, either. Some days he calls me at 1:00 to have me explain how and why he’s lost his license. He calls me again at 2:30 to ask me the same, and again at 4:00, and again the next day.
Stage four is sometimes called “mild dementia.” Compared to Omo, Ofa is mild. Compared to everyone else, Ofa is a mess.
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Ofa’s Alzheimer’s was discovered via brain imaging, which showed the plaques and tangles that mark the disease. Omo’s Alzheimer’s was a diagnosis of exclusion. She did not have any identifiable diseases and still there she was, addled. Omo has suffered a series of tiny strokes over the years; sometimes I question if this, and not Alzheimer’s, causes her dementia. The answer to my question doesn’t matter at all.
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Omo is almost through stage six on the FAST scale: difficulties with everyday activities such as dressing and bathing. She stuffs her tiny legs into shirtsleeves and wraps pajama bottoms around her neck, often to jaunty effect. She talks using what the caregivers call “word salad.” When I say, “I got you some applesauce,” she says Yes Mr. Pie never even havenin. No a have a heat a have. Nope. When I ask, “Do you need a spoon?” she says No but I need one my nose is spooling. She mostly knows who I am, and she mostly calls me my name, though sometimes she calls me Elaine or Joanna. She mostly knows my sister L, but she mostly doesn’t know my sister’s husband, or my husband, or any of her grandchildren. She knows Ofa, and she calls him John or his nickname, Jack. She knows the dog and she calls him puss puss and kitty and sweetie and my baby and she worries about him and she worries that the caregivers are stealing him. The dog is a good boy and happier to be pestered by Omo than Ofa is.
All day Omo moves things around from here to there to there. Cheerios fill water pitchers, wicker baskets rest on the top rack of the dishwasher, a lampshade is wedged between the wall and couch, a poppyseed muffin has been stuffed into a mug. Rummaging, this behavior is called, a coping mechanism for the disorientation that dementia causes. Omo plays with food but also she eats it, tiny snacks all day, along with bits of paper and dog kibble. Omo can still use the toilet. She has not arrived at 6d (incontinence) or 6e (fecal incontinence). I don’t need my Plus to find gratitude.
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My bed at The Oaks is not Omo and Ofa’s bed; my bed is the living room couch. Before lying down, I block the front door with a lidded trash can and put a smaller trash can on top. I think I will hear Omo trying to escape, but if not, I will definitely hear the trash can falling. All this I do after Omo is settled into the bed, after Ofa finally follows her, several hours after I want him to. She’ll be up at 4 a.m. latest and I’d like to find some sleep, but the Plus reminds me to stay positive, reminds me that Ofa is shrinking but he is still big enough to want to spend an amiable hour watching baseball on the couch with his daughter; to spend an unbothered hour without Omo his wife, a constant source of worry, a reminder of his future, an agitated interrupter, his greatest love.
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I love my parents. I loved them, the parents who came before. They were flawed and I am flawed, but they loved me and I loved them and I cannot imagine caring for Omo and Ofa without my connection to their predecessors, my real parents, fueling me.
So many people did not have this loving relationship. If I need a hand-drawn Plus-mark on my wrist to get through a night and a day with them, how do these other grownup children do it? What happens to their Omos and Ofas if they can’t? And the questions of privilege. Omo and Ofa can pay for caregivers who check on them three times a day. They have bank accounts and health insurance and long-term care insurance. It is a lot of money, not enough to carry them through the FAST scales’ worst-case lifespan scenarios, but absolutely enough for now. For now they are solid. We are solid. Many people are not, because America is broken.
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I am not broken, this particular night, I am Getting Through It. I stack the trash cans, tuck everyone in, try to settle on my couch, but for an hour or two hours or three Omo gets scared every fifth minute, or agitated, or anxious. I tuck her in again and again, every few minutes. Every few minutes I lead her away from Ofa, from her poking poking at his head, buried under his pillows, lead her away from the blankets, which she spends hours folding and moving and moving and folding, just as I spend hours folding and moving and moving and folding her back into the bed.
Again and again, Omo asks me, in Word Salad, to get into the bed. I ignore her. I say “night, night!” and I run back to my couch and wait for the next fifth minute to arrive. I rub the Plus and I refuse annoyance and I try to empathize and finally, after her 89th request that I get into the bed, I cave. Maybe if I curl into a ball right here, she will sleep and then maybe, curled into a ball, I will sleep too. “Okay,” I say. “I will crawl into this bed. You are my mother and you are unhappy in the night and I will be here for you.” I don’t say any of this but I curl up and she sees me.
Nothing is better. Omo still frets and tries to find me. Ofa coughs and swears. The dog snores and hogs all the space at the foot of the bed. Finally I retrieve my pillow from my couch and descend to the bedroom floor where, I hope, Omo can still see me. I stretch to my full length but nothing else changes. Fret swear snore. Fret swear snore. After 15 minutes or 17 hours I say, “let’s go, Omo!” in a preschool teacher’s voice, because my own voice is lost in the overwhelm and if I try to find it, I will be lost, too.
Omo springs up, happy, and for the next 4 hours or 5 days I sit through Roseanne after Roseanne after Roseanne. I know we don’t like Roseanne anymore but the show soothes me, at 2 a.m., at 3. Watching it feels like taking care of me, though only me because Omo doesn’t pay attention to Roseanne or Dan, can’t latch on to story or character. I do pay attention and the snarky humor and messages of rough affection recharge the Plus.
As Roseanne gives way to late-night paranoia-laced infomercials, Omo rummages and frets, turning lights off and on, wanting to go back to the bedroom to check on Ofa and I won’t let her, wanting to go back to the bedroom to check on the dog and I won’t let her, wanting wanting wanting and I’m wanting to sit on her until she passes out but instead I call on the Plus and I work to convey calm.
I convince her to sit on my couch and help me fold facecloths. I have purchased many facecloths from Family Dollar, which I keep in a basket for moments like this. I hand one to her. She folds it and hands it back to me and I give her an unfolded facecloth. She folds it as I unfold the first and we swap and we swap. In this way we pass a peaceful stretch of very early morning.
And then I pass out and wake up in a panic. It’s 4:30 and the TV is still blaring paranoia and the trash-can tower is still in place. I find Omo in bed with Ofa and the dog and they are all asleep. Sleep! I go back to my couch and fall asleep and wake at 6:30 to Omo pressing a roll of toilet paper into my neck.
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The toilet roll ends my night’s sleep and begins an even more ridiculous day that involves stonewalling (Omo won’t go to the doctor), thievery (Omo drinks all my iced coffee), complaints and whining and demands (Ofa wants food, Ofa doesn’t like my driving, Ofa wants to go to a quiet spot by the side of a lake 12 hours away to eat his lunch, Ofa wants a hot sweet drink a cold sweet drink a little ice cream). Endless, but during that long, long tired long day, I find the Plus recharging several times without any effort on my part.
At the doctor, the nurse practitioner notes Omo is doing badly. Very badly and much worse than last time she came. I often assume I’m a giant incompetent baby of a caregiver, that someone else could more easily handle Omo, that I am not enough. But what the nurse says about Omo being worse makes me feel better. Yes, Omo is very difficult. No, I am not a giant incompetent baby. At least about Omo. Surge!
And surge at the post office. Ofa needs stamps. I buy two sheets of flowers. “These are lovely,” I say to the postmistress, who probably doesn’t call herself that. “Aren’t they?” she answers. Out in the parking lot, Omo is escaping from the car. I lure her back in and hand the sheets of lovely flower stamps to Ofa, who says, “You should have bought a roll of stamps.” The Plus be damned, I snap “You should have asked for a roll” and I stomp back in.
The postmistress says, “That was quick.” I say I have two parents with Alzheimer’s and they are both driving me mad and one of them doesn’t like stamps in sheets. I immediately regret my overshare — we are New Englanders — but she nods and says, “Oh, so two toddlers.” And she gets me a roll of stamps and she is kind and when I leave, we joke that I’ll be back again in five minutes. I feel seen. The Plus recharges.
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All morning, in my head, I make big plans for 2 p.m., when my shift at The Oaks ends. I’ll leave Omo with the 2 p.m. caregiver and take Ofa for another treat. I’ll do a big grocery shop on the way home and I’ll make my family a nice dinner. My other family, my two children and my husband, my dog and my cat, who I miss while I’m at The Oaks as if I’ve been gone for a year. After dinner I’ll catch up on work and I’ll I’ll I’ll I’ll.
But the Plus demands a pause, a re-thinking, a consideration. As much as I need to do the hard work of being Not Negative, I also need to allow myself easy moments of relief (Roseanne!) and to be open to the moments when they can happen (Post Office!). The Plus has to be about pushing hard in the right direction, but also about allowing myself to get what I require to keep pushing. Sometimes it’s impossible; Omo’s a manic pixie, an Energizer Bunny, a tiny nonsensical buzzing bee. Ofa is grumpy and dissatisfied and demanding and sad. And still, sometimes instead of doing the dishes, I can sit on the couch while Omo pinballs; sometimes I can hide in the bathroom for ten minutes, listening for danger and escape but also breathing; sometimes I can say no, Ofa, I’m not driving you anywhere for any more god-damned treats. Because sometimes the Plus should mean minus. Sometimes my love should be for me. I can get in my car and drive the two hours home and not stop at the grocery store. I can not make dinner; I can bring my family tacos instead. I can not spend the night working, I can accept that I’ve been working for 24 hours and have earned a long shower or a night of stupid television or an early, early bedtime where I can climb, alone, into my own bed and sleep.
Susanna Baird, when not writing or reading, edits the journal Five Minutes and helps run a nonprofit addressing clothing and hygiene insecurity. She lives in Salem, Massachusetts, and at susannabaird.com.