Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  She smiles. “Do what you need to do for you,” she says, one of her old 12-step sayings.

  My mother is incredibly selfless, I think. Later I realize that she’d probably already forgotten where she was and why, and considered my goodbye the end of a normal visit.

  It’s a late Saturday afternoon and I’m visiting Mom at the hospital after spending the entire day cleaning the cottage with Ben. We’ve begun to rent it out each week of the summer that we can’t use it. We’ve bought all new furniture, repaired the broken concrete steps, cleaned the roof and chimney, and purchased new dishware, towels and linens. The cottage is cozy and beautiful again, our renters love it, and we are fully booked. We’re not able to save much rental income, though, as the refurbishing, repair and maintenance are expensive, the property taxes high. Renting the cottage simply allows us to keep it.

  Mom has been moved to a new room, and I find her in a double room in the bed farthest from the window, with her bare feet and legs sticking out from her blanket. My first thought is that she’s spilled some tea. I ring for a hospital aide to change her sheets. Two aides come and tell me that Mom’s been incontinent, which catches me by surprise for some reason, maybe because I’ve never seen her wet. They roll Mom first onto one side and then the other so they can slip clean sheets and a pad under her. Mom cries out when she has to move her hips. Though I’ve never seen her in so much pain, all I think I can do is stand by, passive; I assume the aides know what they’re doing. But afterwards I wonder if I’m wrong. How often do they read the patients’ charts?

  As usual I’ve brought treats, today a single serving packet of Oreos from the hospital cafeteria and a pint of sweet Bing cherries from the farm stand down the road. As she eats, I sit in the chair at the foot of her bed and read the local paper. Three hours later, I kiss her goodbye, as we always do now, on the lips. I smooth her hair and lightly sweep my hands in a crescent around her face.

  “Oh, I like that!” She gives me a bright smile as I move away from the bed. “I love you,” she says.

  “I love you, too.”

  The next day, Sunday, is my secular Sabbath, the one day a week I try to do no work and just enjoy the quiet blessings of life. I wake up not wanting to go anywhere, and rest all morning in the living room, reading. Certainly a hospital visit can be a blessing, but I still see such visits as duty, not pleasure.

  By noon, though, I realize I need to call Maggie, the private aide, to tell her that Mom’s in the hospital and won’t be back at Greenway for a while. Maggie takes this opportunity to tell me that, at Greenway, Mom was not receiving a shower in between her visits. “I would find your mom wearing the same clothes, the same underwear, I left her in two days before. Sometimes her underwear was wet.”

  I tell her that Mom was probably resisting being changed for bed, and sleeping in her clothes. But the Greenway staff could have insisted that Mom change on the alternate days that Maggie was not there.

  “I really recommend Maple Grove,” Maggie says, referring to the other assisted living place in town, the one with the dementia cottage.

  I thank her for telling me, and say I’ll think about it.

  After lunch my guilt about leaving Mom alone in the hospital pushes aside my inertia and I drive the five minutes there. As I leave the house Morgan asks me to wait while she picks a red pear from our tree for Grammy. I bring as well a heavy vase and pick fresh flowers for her from my garden: snapdragons in maroon, orange, and white; matching strawflowers in the colors of an October sunset. At a convenience store down the hill I pick up the Sunday Times for myself, and a small packet of peanut M&M’s for Mom. Mom used to love peanut M&M’s when she stopped drinking; at that time her local 12-step group encouraged eating sugary things as a substitute for alcohol.

  I find Mom sitting up in her hospital bed but slumped a bit, staring off into space.

  “I wondered where you were,” she says. A glint in her eye quickly fades.

  We find a movie on the TV with Cary Grant and Humphrey Bogart. Though she can’t remember their names, Mom seems to recognize their voices. We continue to click and find the movie Anna and the King with Jodie Foster and Chow Yun Fat. I ask Mom if she remembers when I was in the musical The King and I in sixth grade and she says no. I remind her that I played the oldest of the children in the processional march. I had to wait to hear the music begin—dah, dum-dum, dummm—and then lead the line of children out onto the stage. I tell her I had to wear short, billowing pants that looked like giant diapers and that we all had our hair dyed black and pulled up in buns. She finds this amusing. I tell her that I got to sing on stage with the other children in Anna’s class. Now, as I sit next to Mom, I reach for her hand, sit back, and sing “Getting to Know You.” Mom knows the first few lines and sings along. I’m self-conscious at first, nervous about what Mom’s roommate on the other side of the curtain might think, or what the staff will think if they can hear us. But singing together with Mom, stroking her hand, this worry passes, and, for a few moments, all is “bright and breezy.”

  After an hour and a half with my mother I tell her I need to go home. On the back of her lunch menu I write her a note in big block letters:

  Mom,

  Do not get out of bed! If you need something, call the nurse by pressing the red button on the TV remote.

  You have a fractured pelvis, and it needs to heal!

  Love, Martha

  First thing Monday morning, from work, I call the hospital’s discharge nurse. Mom must leave the hospital and spend a few weeks in a rehabilitation center.

  “What would you prefer to do?” she asks me. “Greenway cannot take her back.”

  I tell her that I’ve heard good things about the rehab center at a nursing home called Lakebridge. But I’m not sure how I’m going to transport my mother if she’s in too much pain to get into my car.

  “People sometimes hire a wheelchair ambulance,” she says. “But why don’t we worry about crossing that bridge when we get to it?” She’s cheerfully dismissive.

  I want to tell her, but I don’t, that I’ve already missed many days of work taking Mom back and forth to the hospital, and I’d prefer to be able to plan ahead, to not be surprised by a call one morning that she’s ready to be discharged.

  After work I swing home to pick up Morgan, who wants to come with me to the hospital this time, maybe just to spend more time with me, as I’ve been so distracted lately. When we arrive we find Mom standing up next to her bed as if about to walk off.

  “Oh, I was just coming to see you!” She smiles at us, but doesn’t greet Morgan by name.

  She’s unhooked the alarm that is supposed to alert the nurses if she tries to get out of bed. Usually a string connects a small clip on the shoulder of her hospital gown to a magnetic hook on a black box the size of a deck of cards strapped with Velcro to the bed railing. If she moves too far off the bed the magnetic hook is pulled off the black box and a loud alarm goes off. I see that the clip, string, and black box are not only unattached, but neatly coiled up on the tray next to her bed. Wily and persistent, Mom’s figured out how to remove the whole alarm system intact. The aides and nurses down the hall are none the wiser.

  The only other way to keep her on bed rest would be to strap her down or to drug her, neither of which the hospital wants to do. Of course I wouldn’t want to see her out of it on drugs or tied down, but I worry that she will fall again and hurt herself even worse. It still does not occur to me that I could hire a private aide for the daytime hours; I assume it’s the hospital’s job to keep her safe.

  Two aides help Mom into bed, and with the head of the bed raised up, she sits and digs into the cheesecake with strawberry sauce I brought. Morgan has chocolate cake and they trade bites. As I watch Mom enjoy her cheesecake I think of how this is like parenting a three-year-old: as long as she has something she can give all of her attention to, even a small thing like a snack, she is happy and life is good. I can sit quietly and just be with her; I don’t nee
d to make conversation. Morgan watches a children’s station on the TV. I smile at Mom while she chats about things that I can’t really make sense of. Once again I slip down the hall to pilfer a Time, a Woman’s Day, a Vogue. Mom glances at the covers of the magazines but tosses them to the foot of the bed.

  “Now, clean up after yourself,” she says.

  “But,” I say, annoyance flashing through my veins, “I got those for you to read when you’re bored.”

  “Oh—okay.” She laughs.

  In a moment she says, “When are we leaving?”

  “Morgan and I will leave soon,” I tell her, “but you have to stay in bed here and rest. You have a fracture that needs to heal.”

  “I do?”

  I look around for the green piece of paper on which I wrote the letter to her yesterday but it’s been thrown away. When I write her another one I wish I had tape so I could fasten it to something that won’t get tossed. Mom reads it over and over; each time is a revelation.

  I fill out the nursing home application form for rehabilitation, then rise to leave. Mom’s eyes are bright and she leans forward. “So, you’re taking me with you?”

  “No, Mom, I’m just taking Morgan home. I’ll be back tomorrow.”

  “So when...can I...expect you?”

  I tell her I’ll be there after work, around 3:00. I remind Mom again to not get out of bed without help and the woman in the other bed calls out to me, “I’ll keep an eye on her! If she gets out of bed I’ll tell her to get back in!” I peek around the curtain and give Mom’s roommate a big thank you, but I feel too drained to appreciate this angel helping me watch over my mother. Mom laughs.

  I have my other angels. Maggie is warm and thoughtful enough to forewarn me, discreetly, that I am choosing the wrong rehab center. When I tell Maggie that I’ve asked that Mom go to Lake-bridge for rehab I can hear her inhale sharply.

  “I wouldn’t want to see her there.” She hesitates as if it would be unprofessional for her to criticize the place.

  I agree to check out a different place she recommends, but time is running out—quickly.

  On Wednesday, Morgan and I arrive at the hospital to find my mother swaddled in an adult diaper, flat on her back looking up at the ceiling. Her thin legs lie uncovered; her feet are bare, her brown hospital-issued socks strewn at the foot of the bed. With her body curved toward the edge of the bed, her head rests only three-quarters of the way up, as if she got out of bed and only made it back in half way. The Depends lie loose and baggy around her hips. The tabs stick out. I feel a twinge of anger at the hospital for leaving her like this, but mostly I feel numb.

  Mom looks up at me with a small, embarrassed smile, as if she’s trying to lighten a depressing situation. “This is...new...for me.”

  I swallow hard and reach for her hand. “You mean wearing Depends?”

  “Yes,” she says, “these...diapers.”

  I take a breath, keep looking down into her eyes, and try to explain.

  “Sometimes you’re incontinent, Mom. You leak urine. It’s fine. It happens to a lot of older people.” I grope for something else to say to reassure her. “Lots of people wear these Depends under their clothes and you don’t even know it. Probably the hospital put these on you so you won’t be sitting in a wet bed.”

  Mom listens, and with her usual trust in me seems a bit less embarrassed. “If you say so, sweetie.”

  It smells in her room, and I notice a wastebasket next to Mom’s bed full of rolled-up wet diapers. Why should she have to lie right next to that? I move the wastebasket into the bathroom.

  “Mom, I bet you’ll be glad to know that you’ll be out of here soon—maybe even tomorrow. You’ll be going to a rehabilitation center so your pelvic fracture can heal.” Woodside called me today and said they had a bed. I try to avoid using the words “nursing home,” but refer to it as rehab. “It’ll just be temporary,” I say. For the next ten minutes I explain several times why she needs rehab.

  “I want to know more,” she says.

  Without realizing it I find myself trying to distract Mom, much as I would a preschooler. On the bedside table I spot the two photo albums that I’d brought in another day.

  “Did you have a chance to look at these?” Oh, yes, she says. I place the album with photos of the cottage on the bed next to her lap. With her thin but strong arms Mom holds the album upright on her hips without a sign of pain. She brightens as soon as she opens it to the first page.

  “I see you,” she says, pointing to herself in a photo, “but who is this little one?”

  “That’s me, Mom.” My stomach contracts. “And that’s you, when you were a bit younger than I am now.” I point to her face in the photo with the black cat-eye sunglasses.

  Silent, Mom shakes her head as if in disbelief.

  “You know, Mom, two years ago you helped me label all these photos.”

  “I did?”

  In the evening, I tell Ben about my afternoon with Mom, and he gives me a long hug and a kiss. He often uses humor to try to lighten my mood, and now he smiles and reminds me of our standing joke. “Remember,” he says, “if one of us ever gets dementia, we’re going to borrow a gun, go out into the woods, and have ourselves a little hunting accident.” I laugh, but in this moment it sounds like a darn good plan. Messy, but definite.

  Very early the next morning, a Thursday, the hospital discharge nurse calls to tell me without warning that Mom needs to leave that day. I agree to a 12:30 discharge so I can get at least a couple of hours of work done in the morning. I tell the discharge nurse to let her go on her own with the ambulance; I will meet Mom at Woodside. I still think that professionals like nurses and an ambulance crew should be able to keep a person with dementia calm and unafraid. I still try to delegate as much as possible.

  But only five minutes after I hang up, as I rinse the breakfast dishes, I turn the faucet off and sigh. I can’t let Mom leave the hospital and arrive at a new place without a family member by her side. I need to be there to explain to her what’s going on, to talk to her. This may be the first time I accept that my mother’s comfort is more important than my convenience.

  Chunks of Life

  Woodside 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,” sh
e 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.