Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  “Yes, that’s me,” Mom says.

  “No, it’s me,” I say. I can’t keep myself from correcting her on this one; I am not my mother and she is not me. And has she forgotten what I looked like?

  Diane asks about another photo on the wall, the blown-up, framed photo of Mom canoeing around her lake. “Did you live on Silver Lake?” she asks, referring to the history I provided on Mom’s intake papers.

  “No, never,” Mom says with conviction.

  “You lived in the cottage on Silver Lake for twenty-five years,” I interject. To Diane, I say, “Mom’s getting tired.” Doesn’t the staff realize, I wonder, how exhausting this kind of long day is for someone with dementia?

  At 5:30 it’s time for dinner in her new home, so with her walker, Mom and I make our way the few feet to the dining room while Candy eats her bagged meal in Mom’s room. Mom and I will have the smallest, “family” dining room all to ourselves, with its centerpiece of plastic leaves and pumpkins. Dinner disappoints us, though, and Mom eats little except for dessert. The director stops to chat.

  “You’re probably just tired, Judy. Maybe tomorrow you’ll wake up with more of an appetite.” I like that the director checked on us. I feel confident that tomorrow they’ll make sure she eats. She’ll be fine. Won’t she?

  As I leave I feel the same as the day I left Mom at Greenway after her stint at the rehab center: sad and empty, but light-headed with relief.

  A week after Mom moves in, Maggie calls me again. Whenever she calls, my anxiety rises in anticipation of a problem. The first thing she tells me, though, is good news. The day before, Candy, the aide, drove Mom to the Friends of the Library book sale, to the park, and out to lunch. Mom “had a great time.” But when Candy had arrived at eight a.m., Maggie says, she found Mom in bed asleep with her clothes on, as if she hadn’t been dressed for bed the night before, and wearing a soaking wet Depends.

  The Elm Haven RAs keep a log of their notes in the room, and the previous night’s log said that Mom has been doing some kicking and hitting. Maybe that’s why she wasn’t changed. Maggie suggests that I “keep on them about the hygiene stuff.” She also offers to have her aide give Mom a shower on the days she’s there, as Elm Haven charges extra for showers beyond two days a week.

  Diane, the director, tells me that Mom has been agitated, or “restless,” as she prefers to call it, as it’s a new place and she doesn’t know anyone, and the staff are used to that. If she was kicking and hitting Sunday night, she says, they would have left her alone and let her sleep in her clothes. Diane will check the records for that night, but we are more concerned about the wet Depends. “It might break down her skin,” I say, and she agrees.

  I tell Diane that Michelle, the nurse, has called me already with a few concerns and that I appreciate the clear communication. I tell her they can call me at any time. Diane says that likewise if I have any concerns I can call them at any time, day or night. This is a welcome change from Greenway.

  I also tell Diane that Maggie’s outside aides will be tapering off next weekend, that after this initial period of adjustment they will be coming only once a week, for about six hours, to take Mom out.

  I need to order Mom more HipSavers online. Also, a prosthesis for her mastectomy. The prosthesis seemed to get lost when she went to the hospital in the summer when I was out of town on vacation. When she first lost it, she would pat her chest and laugh as if to say that something was missing. Though she doesn’t seem to notice its absence now, I still want to make sure that my mother has everything she would have ordered for herself a few years ago—the same kind and color of Keds, the same high-necked, ruffled nightgowns she liked because they hid her mastectomy, those ubiquitous, ivory trouser socks. I don’t care if my mother’s shirts lie concave on one side (both sides are pretty flat now, anyway), but I would feel guilty if I didn’t provide, with her checkbook, the kinds of personal products and clothing she used to care about very much.

  I am soon increasingly impressed with Elm Haven. They have ordered a different style of Depends—the kind in one piece, like underwear, without the side tabs that made it so easy for Mom to rip them off. No more waking up wet in bed. Problem solved.

  Living Grief

  In late October, two and a half years since she moved in with us, I bring Mom along with me and Ben and the kids for an afternoon at the lake. I imagine that she will light up at the sight of the cottage, but as she sits outside with me in the front yard in the shade of an umbrella, and watches the waves, her expression is flat, muted, as if the yard is just a place like any other.

  At first, I feel deflated, but within moments I realize something: It’s time for me to stop trying to bring my mother pleasure through what’s left of her memory. If she no longer recognizes the deep blue swell of her lake, if these pieces of her life no longer move her, then truly there’s nothing but the present moment—and other people.

  I decide to take her out for a rowboat ride. We had asked a boat builder in Maryland to make the forest-green rowboat, in the same color and style as I remember my grandfather’s old boat. I wonder if feeling the rowboat rock softly on the water will help my mother experience the joy in the lake she used to feel in her canoe, or when she watched the waves from her desk.

  Ben helps me support Mom under her arms as she steps in. Mom sits in the middle of the wide seat along the back of the boat, Andrew squeezes into the bow, and from the middle seat I row the three of us a hundred feet out into the lake. I keep my eyes on hers. She grips the edge of the seat, her back ramrod straight, her eyes wide but not scared. We bounce gently on the waves and Mom releases her hands from the seat to stretch her arms and clasp the sides of the boat. She smiles. When I tell her that she can lean against the high back wall of the boat, she scoots her bottom toward the wall and relaxes.

  Back on shore, there’s a problem. We find that Ben has gone off to the store; Andrew and I have to pull up the heavy boat and get Grammy out on our own. I call Morgan out of the house for her help. We hold Grammy’s hands and coach her to walk up the length of the boat from the back, which is still in the water, to the bow so we can help her step out onto the beach. She stands on the seat in the bow, too high to step down. I ask Andrew and Morgan to find a stool in the boathouse and they bicker about who should go. Andrew finds my garden stool, which has wheels, and I wedge it between my feet beside the boat and try to persuade Mom to step down on it.

  “Don’t make me cry,” she says.

  My heart flares for a moment with guilt, but she trusts me and her fear passes quickly. She holds my hands firmly as I ask Andrew to carry over one of the lawn chairs. Mom hesitates, then lifts one leg over the rail of the boat and steps onto the chair, brings her other leg over, pauses, then steps down to the garden stool and then onto the shale, where she tucks her slender shoulders into my arms. Such a production! I can’t believe I asked my mother, who just recovered from a pelvic fracture, to clamber in and out of a boat.

  But I’m glad I did. In the boat Mom seemed to absorb it all—my attention as I held her eye and smiled at her, the breeze, the blue-green waves, the gentle push of the oars, the firmness of the boat’s floor under her Keds. When we passed our neighbors on their dock Mom had let go of the side of the boat to wave with a big smile.

  Without memory, I think to myself, what’s left? Not destinations like going to the cottage—not the pleasure of their anticipation and repetition—but moments like these, of sense and touch, rhythm and movement, patience and reassurance.

  The rest of our hours together on this visit feel more strained. As Mom sits in the living room she looks bored, flips through a few books and reads out loud to me the same titles over and over. I offer her grapes and juice then worry that she’ll knock her glass off the arm of the chair where she balances it so I carry the juice back and forth to her from the kitchen table. Andrew and Morgan play board games on the living room rug with frequent exclamations and rough-housing, and I worry that Mom will get up and wa
lk around when I’m not looking and trip on something or weave and fall down; we brought her walker but she forgets to use it. I scan the floor for the kids’ sneakers and other tripping hazards. I worry that she will try to go outside for a walk and fall down the concrete stairs. Ben and I serve lunch but she picks at her food.

  I ask her if she has to go to the bathroom and she says yes and points to the brass carrier in front of the fireplace used to haul wood. “I’ll just go in that,” she says.

  I do a double take, mildly disgusted. “No, Mom, I’ll help you use the toilet.”

  “Are you sure...I can’t...just go in that?”

  “No, I’m sure. You need a toilet.”

  Later, as we sit in the living room, I ask Mom, “Do you like being here, Mom, at the cottage?”

  “Yes...if those who are here...are not...in a tangle.” Her eyes flash annoyance, her tone so much like years ago.

  Maybe the kids’ bugging each other upsets her, but I can’t tell. I’m not sure what she wants. Is it not enough that we invited her to join us today? I decide not to respond, though, to let it go. I leaf through a magazine left by a renter and find an article by Lauren Kessler, journalist and author of the book Dancing with Rose: Finding Life in the Land of Alzheimer’s, about the three months she spent working as an RA in a memory care facility similar to Elm Haven. She writes that people with Alzheimer’s disease often become hypersensitive to the emotions of others. Certainly my mother seems hypersensitive, I think. If I am not bouncing with cheeriness at every moment, if I relax my body, the muscles in my face, if I dull my eyes and drift off into my own thoughts, as I try to do now, Mom seems to take it as rejection.

  Mom stands up and heads for her coat. “I’m ready to go.”

  “We’ll leave soon,” I lie. “Please sit down.” I no longer mind bending the truth to keep my mother calm.

  What I haven’t learned yet is to keep our visits extremely short—just an hour or two. An entire afternoon is really too much for both of us.

  Later in the evening, at home in the kitchen, I thank Andrew for his help with the boat ride, and give him a hug. An insightful young man of few words, he says, “I can see why Grammy is such a handful.”

  If, in the wee recesses of my mind, I was still entertaining the idea of saving Mom’s money by taking care of her myself at our house again, this afternoon at the cottage convinced me that I don’t have the stamina. The experience finally, completely, vanquished the guilt.

  For my birthday at the end of October, Ben brings home a dozen red roses and a box of chocolates, and Morgan gives me a handmade card, plus two novels and a heart-shaped necklace she found in our community’s re-use room (the “free pile”) that she thought I would like. I’m sick with a cough and low-grade fever and don’t want to go out anywhere. Since I became a caregiver, I’ve had bronchitis every few months. I have to inhale a steroid twice a day to prevent more frequent infections. As the women in my care-giver support group warned me early on, caregivers often get sick. But I won’t make the connection between the stress and my illness, or begin to feel better, for several years.

  As the late afternoon sun pierces the gaps between the blinds, I sit at the kitchen table and call my mother.

  The RA who answers the office phone tells me that Mom is “watching some entertainment. Are you sure you want to interrupt her?” Yes, I’m sure.

  Mom picks up on an extension. I say hello.

  “Hi, sweetheart!” she exclaims.

  “I just wanted to say hi because today’s my birthday.”

  “It is? I’m so sorry, I forgot.”

  “That’s okay. I just wanted my mommy to wish me a happy birthday.”

  “Happy birthday!” she says with a laugh.

  I tell her I would have come over to see her but I didn’t want to get her sick. “When I feel better I’ll come over and we’ll go out to celebrate my birthday.”

  “When will that be?”

  “Maybe I’ll feel better in a few days,” I say, then add, “I sure wish I could get a big birthday hug!”

  “I would give you...five hundred hugs!” she says.

  “I know, Mom.” I’m smiling inside, but don’t know what else to say. “Can you believe I’m forty-three today?”

  “Forty-three?” she says, incredulous.

  “Yeah. When did that happen?”

  “I don’t know!” She laughs. After a pause she says, “I bet you have a lot going on.”

  “Not really. I’m not doing much today because I’m sick. In a couple days I’ll come see you.”

  “I’d like that. I’d like that...real big!” She laughs again.

  I don’t know what else to talk about so I say, “It sounds like your tongue is still dry.” Mom’s incontinence medication, which she started a week ago, has the side effect of dry mouth. Her lips and tongue are parched, shriveled. When she’s not sipping a drink, she talks with a lisp.

  “It is. It weally is.”

  “Maybe it will wear off,” I say. “We’ll check with Dr. Claiborne.”

  “That would be great, because my mouth is weally dry.”

  “I’ll let you go now, Mom. I’ll see you soon. I love you.”

  “I love you, too, honey. See you soon.”

  It may sound childish, but when I hang up I feel as if I have lost my mother—in a new, irrevocable way. Sometimes I feel that she’s still there, and sometimes she’s a new, more loving and forgiving mother, but this time, in this moment, I feel as if I have lost, not gained; I’ve lost the mother who would always remember to call and sing me “Happy Birthday,” the one who would buy me books she knew I’d enjoy, the one who made me angel food cake with fluffy pink marshmallow frosting, the one who sent me homemade cards on my birthday and Valentine’s Day with red hearts and X’s and O’s. On days such as today I need her, my mother who remembers me and shows me she loves me through particular things, certain traditions. I’m not ready to give her up. I sit at the table and cry.

  In the Moment

  The next Sunday, when I feel better, I explain to Ben and the kids that I’m going to take Mom out for my birthday, just the two of us, “because it’s easier that way and no one is unhappy.” I feel a bit guilty not including them, but know that the kids would grow restless with how long it takes Mom to do everything, and Ben would be bored. And I know that I will enjoy lunch more if I allow myself to focus my attention on her.

  When I called Elm Haven yesterday to tell them that I would be coming today to take my mother out, Crystal, the staff member who gave me the tour, answered the phone, and told me, “Your mom is such a sweetheart—always so pleasant.” She had a really nice chat with Mom the day before, and Mom told her, “Let’s do this again some time—real soon.” Crystal suggested to Mom that they “make a date” for the following day; she’s planning on sitting down with Mom for a chat, as planned, even though Mom would not recall talking about it, “because I would remember,” she said. Though I’m glad that Mom is getting this kind of attention, I remain cautious; Crystal’s interest in my mother feels fake. Maybe this feeling comes from the fact that Crystal is the facility’s sales director.

  I walk down the hallway past my mother’s room to the dark TV room at the end of her wing. She’s sitting on the couch, staring down at the carpet with a concerned look on her face, ignoring the TV. Her hair is completely flat, lying straight down from a part in the middle, greasy-looking. I feel annoyed that they didn’t wash her hair when they gave her a shower this morning, but then I realize that it’s not dirty, it’s just wet.

  It’s early November, cold, and I wonder why the RAs think it’s all right to leave her hair wet when she’s about to go out. I ask Mom if she’d like me to blow-dry her hair. I walk her down to her room and ask her to sit. I plug in the blow dryer she’s owned for years, an ancient, bulky model, very loud.

  “Mom, when I was little you used to take me with you when you got your hair cut. You used to tell me that your hair was so thick it alway
s surprised the hairdresser how long it would take them to blow it dry.”

  “Sure!” She laughs—tickled, I think, that I remember.

  Tentatively, with my fingers, I lift the layers of her hair to dry underneath, brushing my fingertips against her scalp. I’ve never touched my mother like this. I used to brush my great-grandmother’s hair, but never my mother’s. Her head feels tiny to me, fragile like blown-out eggshell. As I touch her, I hold my breath.

  At the restaurant, I show Mom how to use her fork to spear the rings of calamari. She doesn’t seem to know which utensil to use unless it’s the only one in front of her. She also doesn’t seem to know what to do with her napkin; I show her how to put it on her lap. A few months ago she would have had no problem with these things.

  Mom barely eats anything, and I wonder if she eats this little at Elm Haven, whether an RA sits at her table and encourages her and her tablemates to eat, or if she is left alone to waste away. I am amazed she is not thinner around the face and arms. I understand why family members, usually a spouse or partner, visit their loved ones in nursing homes and assisted living places at meal time to encourage their loved ones to eat. I consider doing that for Mom, but she seems to be strong so I decide that for now it’s unnecessary and I don’t have the time.

  As we wait for dessert, Mom reaches across the table to hold my hand. She smiles.

  Years ago, Mom rarely touched me without annoying me. If she wanted to tell me something and I wasn’t quite paying attention she’d look me in the eye and push three fingers into my forearm. I don’t think she meant anything by it, but the pressure felt a bit too intense and controlling, and it made me recoil. Now when she reaches for me it’s just to hold my hand, touch my cheek, or stroke my freckles.