Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Ten minutes later Abby comes back for me—“Martha, I need your help,” she says calmly.

  In the hallway I can see that Mom has planted herself in a chair. She’s refused to walk the remaining twenty feet back to her room. She wears that exasperated “I’ve had enough” expression I know so well: her eyes are closed and her lips are pursed. She’s tilted her head back against the chair, each arm balanced on an armrest, each hand draped over the end, bent at the wrist, regal.

  “Judy, Martha’s here to help you walk back to your room.”

  No response.

  “Will you let her help you?”

  Silence, then with a sigh Mom says to Abby, “Yes, but only if you go away. Leave me alone and stop yapping at me.”

  “It’s just a few more feet,” Abby says.

  “Shut up.”

  Abby turns to me. “Your mom was even nastier to me a few minutes ago.” Her tone is matter-of-fact, not accusatory.

  For a long minute Abby and I stand and wait. Finally Mom pushes herself out of the chair, holds onto the walker, and continues shuffling up the hallway. She stops after a few steps. “It hurts,” she cries, and points to the back of her right leg. Her eyes well up.

  “You can make it, Judy.” Abby seems so confident that I try not to worry and instead do what I can to encourage Mom to make it back to her bed. I walk ahead of her, looking back. “Here’s your room; it’s not much farther.”

  When she finally reaches her bed, Mom says to Abby, “Go away.” She leans back onto the bed, her legs half off, and looks up at the ceiling. Abby takes a few steps back, silent.

  “It’s okay, Mom. You’re almost done. Will you let us help you get all the way on the bed?”

  “Fine.”

  Once Mom’s curled up on her side, Abby asks to speak to me in the hallway.

  “I don’t want you to feel bad,” she says. “We know she has dementia, and that she’s not always going to remember things. We’re used to that. And we’re also used to people resisting and saying mean things to us. She might be sun-downing,” she says, referring to a common symptom of dementia, an increase in irritability in the late afternoon and evening.

  “She did walk a long way, farther than she wanted to. But it was good for me to see what her limit is. Next time we won’t go so far.”

  All I can think to say is “Okay.” I feel powerless to protect my mother, bewildered, and sad.

  After Abby leaves, I sit and hold Mom’s hand. I press gently, as if to absorb and lighten her pain. She falls into a thin sleep. I turn to the pile of paperwork to fill out the usual forms—social history, events leading to injury, burial fund, cognitive status, places of residence, consent to release, Designated Representative Agreement—and my own tears start to fall.

  Before dinner this first night, an aide helps Mom into a wheelchair, then brushes her hair, which delights her. I realize I’ve never brushed my mother’s hair. It seems so intimate.

  The dining room is Spartan compared to the fancy, chandeliered dining room at Greenway: blank white walls, the wooden tables bare except for red paper placemats and tiny plastic glasses. We both notice that there is some sort of garden patio outside—I can see cleomes and black-eyed Susans—but the door says “Not an Exit.” Waiting to be served, people stare off into space or nap like birds with their chins tucked into their chests.

  We sit and wait for what feels like forever, maybe twenty minutes, while the aides wheel in the rest of the patients. Some patients walk in on their own, as does a woman of about ninety who shuffles in with a walker and sits across from us at our table.

  “Are you new here?” she asks my mother.

  “Yes, I guess so. I just got...established...a while ago.”

  The woman pulls on a green sweater. “You ask them to turn the air conditioning down and they say they can’t; only the maintenance men can do it.”

  “Are you cold, Mom, in your short-sleeved shirt?”

  “Yes, a bit.”

  “I’ll be right back.” From the car I retrieve the sweater we left in another bag.

  When I come back Mom announces to the room, “This is my daughter!”

  When she finally gets her dinner, Mom ignores the turkey salad and potato salad and heads right for the cupcake. As it’s on her plate, she seems to assume that she must use a knife and fork, and proceeds to cut the cupcake into pieces, which she gingerly lifts to her mouth with the fork. She wipes the crumbs off the side of her knife onto the crest of her turkey salad. She shovels up the pieces of cupcake liner with her fork and deposits them in the valley between the twin mounds of protein and starch as if the whole plate and everything on it is just a background landscape for the sweet dessert. I shake my head in disbelief.

  “You should probably eat your whole dinner, not just the dessert.”

  “Am I going to tell you what to eat?” she retorts.

  “Fair enough.” I am being obnoxious, and I wouldn’t want someone telling me what I should eat—but I can’t help myself. Mom doesn’t seem to register feelings of hunger, just as she doesn’t seem to feel mild pain or the need to urinate. Is this another glitch in her brain?

  I grow tired of sitting with Mom at the dinner table, but it never occurs to me to roll her back to her room myself. I assume she has to wait for the aides.

  “I have to go finish some paperwork, Mom. I’ll see you in a few minutes.” I don’t worry that she’ll feel scared or alone because she seems too out-of-it to even know where she is.

  Five minutes later, Mom appears outside the door of her room, alone, propelled in her wheelchair by her blue-socked feet.

  “There you are!” She taps her heels on the floor to come to a stop, and reaches her arms out to me.

  “You made it back on your own!” I say. I can’t believe she remembered how to go from the dining room to her new room.

  “I didn’t know where you were!” Her eyes are huge, like those of a young child who has lost her mother in a department store. A wave of guilt flashes through me as if I were that mother, too engrossed in her shopping list, in too much of a hurry to get home, to notice that she’s left her child alone in another aisle.

  I drop the paperwork on the bed and step out in the hallway to hug her. From around the corner Peggy, the floor supervisor, appears, erect and calm. She smiles and winks at me, then leans down in front of Mom’s wheelchair to loop something white that looks like a wristband around Mom’s right ankle. It has a small white box attached to it.

  “This is an alarm,” she explains to me. “Your mom announced to the aides back there that she was going to go outside and find you and your car. If she does try to go out the door, this alarm will automatically lock the doors.” She doesn’t offer an explanation directly to Mom besides a simple “We’re going to put this around your ankle, okay Judy?”—but that seems fine to Mom as she pays little attention to this new appendage. I feel jittery, though, with the realization that Mom missed me so much that she tried to find me outside. Impressed that she remembered that I had a car parked outside. That there even was an outside.

  By seven o’clock I’m ready to go. I help Mom out of her wheelchair and into the wingback chair by the bed. I’ve watched the aides enough times that I don’t need to ring for help; I ask her to push herself up out of the wheelchair, stand, then pivot around to the chair using the walker for support. Feeling a need to nest her space before I leave, I move the bedside table closer to the head of her bed. That way, the phone and the magazines are within her reach when she sits in bed. I place a few magazines on the foot of her bed (“There, something for you to read,” I say). I clip the buzzer for the aides onto her sweater. I trot to the main desk to ask for a remote for Mom’s TV. Back in her room I feel I can’t leave Mom alone without some sort of way for her to remember why she’s there. On the back of a scrap of paper I write another letter:

  Dear Mom,

  This is Woodside Rehabilitation Center. You will be here a few weeks until the fracture in your
pelvis heals. Then you will go back to your own room at Greenway. Try to cooperate with the physical therapist. It may hurt, but you have to exercise.

  If you need to get up or go to the bathroom, press the white button clipped to your shirt. Do not get up on your own.

  I will see you tomorrow.

  Love, Martha

  I lean over Mom’s chair and look down into her eyes.

  “It’s getting pretty late, Mom. I need to go home and see my family—Ben and the kids.”

  Immediately her eyes well up with tears. “I need to see my family, too.”

  “I know, Mom.” I am your family, I think to myself, and I’ll be here, every day.

  “I’ll see you tomorrow, and maybe on Saturday I can bring Ben and Andrew and Morgan.”

  Her eyes still lock on mine. She lifts her chin and smiles.

  “Do what you need to do for you,” she says.

  At home in the kitchen Ben pulls me close—“I’m sorry, honey”—and fixes me dinner. I tell him about my day, but realize that most of my caregiving duties for my mother are invisible to him. They happen away from him, out of sight.

  I check my email for the cottage rental business (potential renters like to hear back from me within twenty-four hours), then pull on my swimsuit and walk down to the pond. It’s almost completely dark, the full moon partly hidden by mist, the air still pressing its heat to my face and shoulders. Birds swoop in wide arcs over my head, toads croak from the cattails, and out in the deep end, a fish jumps.

  I think of how my mother used to love to swim, not in ponds so much but in Silver Lake, and in our secret swimming hole in the Adirondack woods. At the lake, Mom would always doggie-paddle back and forth in front of the shale beach, careful to keep her hair and contact lens out of the water, buoyed under her chest by a red, square cushion from the boathouse. As I sidestroke through the pond I imagine that I am swimming for my mother, taking her place. With Mom in a nursing home rehab center, I truly feel as if she is no longer in this world.

  Though I find it hard now to picture anything other than her decline, I force myself to stop thinking that way. Before her injury, only two weeks earlier, I convinced her to try the new wooden swing at the cottage and she enjoyed being pushed back and forth.

  Just let it all go, I tell myself—Mom swimming or not swimming, or eating only a cupcake for dinner. I should take my cue from my mother. If she doesn’t care about swimming any more, I shouldn’t feel sorry for her when I think of her no longer doing it. If she chooses to eat just sweets for one meal, I shouldn’t worry that she’ll go hungry.

  That night I can’t get to sleep for several hours. Then, in the middle of the night, I wake up, my heart racing, from a nightmare. I dreamt I’m standing next to an open window on the third or fourth floor of a brick apartment building. Outside the window I can see an airshaft in the center of the building, nothing but brick walls on all sides, a few windows, and a tiny square of cement courtyard below. Cupped in my hands I hold a tiny puppy, a soft, floppy Lab with brown eyes. I drop the puppy out the window. I can see that the dog is still alive, writhing on the cement. It looks up at me with its big eyes, silent. I want to rush down and help it but there’s no way to get there, no door to the courtyard. I turn my head and avert my eyes.

  • • •

  The next day, after work, I stop by and roll Mom to the courtyard. At a round table under a low-slung tree, we sip cups of water and enjoy the shade, the red geraniums, and the occasional breeze parting the late-August heat.

  “That feels good,” Mom says.

  Abby hustles by, and smiles and waves at Mom as she passes our table.

  “Why...the wave?” Mom calls out.

  “Because I saw you smiling at me!” Abby says, turning back to stand beside Mom. Abby looks at me. “You have the same smile!”

  I give her a reluctant half-smile, still thinking of how hard she’d pushed my mother the day before.

  Turning back to Mom she says, “You did great today, Judy.”

  As Abby starts to walk away, Mom calls out to her again. “Give me a good... report...for the day!”

  “A-plus, Judy,” Abby calls back. “You definitely get an A-plus!”

  The next day, a Saturday, I’m more than ready for a break. I have visited Mom every day since she went to the hospital with the pelvic fracture. Since Ben and Morgan are going downtown to the library, and the rehab center lies on the way, I ask them to stop in and see Mom for a short visit. I’ll feel less guilty about skipping a day if someone else sees her. And if Ben stops to see her, he might have a clearer understanding of what I’ve been dealing with every day.

  It turns out that Ben and Morgan spend more time with Mom than I expect they will. Ben buys Mom a small chocolate bar from the vending machine in the staff lounge, then wheels her outside to the courtyard. Morgan tells me later that her dad smiled the whole time. I’m surprised, and I love him dearly for doing this willingly, considering how he feels about her.

  • • •

  Sunday, I stop to see Mom in the late afternoon after cleaning the cottage. I am still grimy, in a frayed shirt, my greasy hair in a ponytail and with a sheen of sweat on my face.

  “Oh, was that good for you?” she asks, meaning the cleaning, I think.

  “Sure,” I say. “I like to see the cottage nice and clean.”

  I tell her the lake was a gorgeous deep blue today, with huge waves and whitecaps.

  “Was it...did...the lake...suffice?” she asks.

  “Sure,” I say again, though I’m not positive I know what she’s asking. Was the lake beautiful in its own right? Did I feel happy there? Yes.

  I tell her that the neighbors right next to us were there for the weekend. Mom gives me a blank look. They were in the brown and white cottage, I explain. “Charlie Smith’s place.”

  She lights up at his name. “Oh, sure!” she says.

  “His youngest sister owns the cottage now. Charlie’s ninety-one and in a nursing home.”

  Mom looks sad. As she tries to find the right words to express how she feels she tilts her head and smiles at me as if she’s amused at herself. She raises her hands in front of her chest, her palms facing each other a foot apart, and packs the air between them as if creating a large snowball.

  “I’d forgotten...,” she says, “that he has had...those chunks... of life.”

  As we sit in the courtyard I mention to Mom how two weeks ago today, before she fractured her pelvis, we celebrated her seventy-fifth birthday. I tell her that we had three celebrations. Ben and I and the kids took her out for dinner and gave her presents, then, on another day, Morgan and I brought a large ice cream cake to share with the residents and staff at Greenway.

  “A lot of people really like you there, really care about you.” When I tell her this, Mom smiles.

  The third party was at the cottage with some of her old friends: Bill and Susan, more neighbors from along the lake, and two women who worked at the library and knew her for years. I wanted her friends to be able to celebrate her life, even if she recognized only a few of them, and to share her joy in their company. I had hoped to invite some of her oldest friends, but if she still had an address book with their phone numbers, I didn’t find it when we moved her out of the cottage.

  Today is the first time in over a year that I’ve gone to my support group. Until Mom’s multiple hospital admissions this summer, things were going smoothly and I didn’t feel a need to go. I recognize three women, all of whom have husbands with Alzheimer’s disease. Arlene, a tall, elegant woman of seventy with bright-red lipstick and short, white hair, has a husband in the dementia ward of the nursing home where Mom is in rehab. He’s farther along in his dementia than my mother, and he no longer speaks. Arlene visits him every day, but she tells us, “I know the man I visit is no longer the man I married.” I assume that since Arlene is more experienced than I am she is absolutely right; I don’t question her wisdom. I assume that my mother will also change into a differe
nt person. In fact, with her sudden struggle with words, I assume that the process has already begun. I equate language with self.

  Slowing Down

  After dinner on a Tuesday, I walk the three minutes it takes to get from our house to the large building in the center of our community that serves as a meeting space.

  Thirty of us are here to listen to a presentation about how to support Rita, our one resident living with dementia. Rita has grown harder to understand, and over the past couple of years most of her neighbors have shied away from her, including me. Karen, a neighbor who leads the presentation, trains family care-givers and paid caregivers nation-wide in compassionate, person-directed care. Her father also had Alzheimer’s disease. Beth, another neighbor who has helped Rita’s children coordinate her care long-distance, joins her. A third neighbor and presenter, Adele, has spent a great deal of time with Rita as one of what they call her “care partners.” I’m excited to learn all I can from these women and to perhaps share some of my own experiences.

  “Instead of trying to change the behavior of someone living with dementia,” Karen suggests, “focus on shifting your own expectations or shifting the environment. Look at what works now, their strengths rather than their limitations, and build on those.”

  Adele tells us, “If Rita says something that doesn’t seem to make sense, try to find something that works with it. It’s like a puzzle. You don’t need to have a deep conversation to have a deep connection. Relax with it and don’t worry about it.” I think I can try this. I already try to work around my mother’s odd choice of words.

  “Affirm their reality,” Karen says, “and creatively re-direct them if you need to steer the person away from insisting on something that isn’t a good idea.” Beth shares an example: If Rita wants a third serving of ice cream at a community meal because she doesn’t remember how much she’s already had, Beth doesn’t try to reason with her. She tells her “We’ll have ice cream at home.” Rita says, “Okay,” and within a few minutes forgets all about it.