Inside the Dementia Epidemic: A Daughter's Memoir (18 page)

W
oodside is a two-story extension of a four-floor nursing home, its white, cement buildings flanked by a courtyard of small trees, flower gardens, and a blue picket fence. Inside, four staff members sit bent over paperwork at the front desk. When the medics wheel Mom into the lobby, the staff members all look up at the same time and greet us with a cheer of “Welcome!” I’m used to being invisible at the hospital so I feel a bit embarrassed by the attention. I force a smile. Mom, of course, beams.

There’s something antiseptic permeating the air, minty and solid: unnatural, but not quite unpleasant. I’m pleased to learn that Mom will have a bed by the window. The large room with two beds and a curtain down the middle feels more homelike than I expected, with walls painted in light green, paisley drapes tied back on the large window, and a matching wallpaper border along the ceiling.

I see that her roommate is a woman perhaps in her nineties wearing a hospital gown and tucked into bed under what looks
like a handmade afghan. This is the woman the director told me would be heading home the next day. I’m so focused on my mother I don’t think to say hello. The woman is silent but follows us with her eyes.

The floor supervisor, Peggy, stops by to introduce herself, then Mom and I sit and look at her new space. Between the slats of the window blinds we can see a leafy side street lined with clapboard houses. The registered nurse, Sarah, arrives and squats in front of Mom’s chair so that she’s looking up at Mom when she asks the usual questions: How did you fall? Are you in any pain? I try to catch her eye to tell her that Mom isn’t able to remember her accident, that her answers may sound probable but won’t be accurate. Sarah nods in my direction but doesn’t return my look or try to include me in the conversation. She speaks to me only when she stands up. “I’m happy to talk to you if you have any questions,” she says. “Just give me a call.”

A call? I think to myself. You’ll listen to me on the phone, but not now, in person?

When Sarah leaves I notice that my mother’s roommate has a large mug of water with a straw, but Mom doesn’t. In the hallway by the vending machines I see Peggy, the floor supervisor, again. She tells me that she will rig my mother’s bed with a hidden alarm: under her sheet an alarm pad will sound if she takes her weight off of the bed.

“I think your mom might be a ‘fiddler,’ ” she says with a smile. “If we attach the alarm to her shirt she’ll just unhook it.”

“You’re right,” I say, deeply relieved that Peggy is so observant, that she has already noticed this tic of my mother’s and come up with a way to try to keep her safe.

When I return to Mom’s room the social worker, Katherine, stops by, accompanied by the physical therapist, Abby. They are both warm and upbeat women in their forties, with short hair and
dangly earrings, and wearing Birkenstocks. They introduce themselves and ask for my name. They ask Mom to smile for a photo—“so we can be sure to give you the right medicine,” they tell her. To get Mom to smile, Abby makes moose antlers with her hands behind Katherine’s head, and Mom laughs and makes moose antlers, too.

Abby, the physical therapist, squats down in front of Mom’s chair as the nurse did, and asks Mom a familiar round of questions. Again I try to catch her eye, and, failing that, pipe up and tell her that Mom won’t remember and that her answers won’t be too accurate. I worry that if they get the wrong information they might ask her to do things she shouldn’t be doing and she may fall again or strain her injury. Later I realize that by asking her all these questions the staff is probably just trying to assess her memory for themselves.

Abby helps Mom put on her Keds. “These must be new!” Abby says and looks up at me. I appreciate her smile as a way to acknowledge my care for my mother. She gets Mom to her feet. “Judy, I need you to walk with me. We’re going to go down the hallway so we can weigh you.” I stay in the room to fill out the paperwork.

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.

B
efore 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.

A
t 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.