Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  I’m nervous that Dr. Claiborne may never have seen these forms before and will refuse to sign them. I’m nervous that she will object that I haven’t brought my mother along to the appointment. (I realize much later that Medicare might not even reimburse Dr. Claiborne for this “end of life” discussion.) I’m nervous that Dr. Claiborne will think I’m trying to kill off my mother before her time.

  All my fears are unfounded. She listens quietly and respectfully. She says, “I haven’t seen this particular form, but that’s okay.” We review each section together and she signs her initials: Resuscitation, no; hospitalization, yes, with the following restrictions: feeding tube, no; intubation, no; antibiotics—yes (but not if Mom has something like pneumonia over and over, I say, if she’s miserable and it’s only antibiotics keeping her alive.) “Yes, we can revisit this form if we need to,” the doctor says.

  She looks up and squints softly at me over her bifocals. “At some point,” she says, “your mom’s quality of life may be so poor you won’t even want her to go to the hospital.”

  “You’re right. You’re absolutely right.” I smile, relieved that she’s said what I was too nervous to suggest.

  What Remains

  By August of 2009 the cottage is gone, sold to a lovely young couple who say they look forward to passing it on to their small daughter when she’s grown.

  Ben and I visit the cottage one last time alone. I gather a few personal items—my grandmother’s silver salt and pepper shakers, the framed watercolors Mom painted years ago, the large picture of white sailboats leaning over the rolling waves of a blue-green lake. The new owners will be renting out the cottage, too, and everything else must stay as part of the sale: the furniture, the green wooden rowboat, and the contents of the boathouse. Inside the cottage, I think about how I’ll miss the sound of the wooden kitchen cupboards clicking shut, the squeak of the metal kitchen drawers, the creak of the steep, drop-down stairs, the rustle of the folding bedroom doors. In the boathouse, I cry; I can smell the familiar mustiness of the shale floor, the dampness of the old cupboards and tables that hold the ancient outboard motor, the fishing lures, the canoe paddles and life vests. I think of how, as a child, I used to sit cross-legged on the shale inside the open doors, next to my grandfather. He’d sit in a green metal chair beside me, smoking a cigarette, and together we’d wait, silent and still, for approaching storms; we’d see the lightning strike the cliffs across the lake, hear the thunder and the rain, then feel the cool air rush over us. Now I close the heavy wooden doors, click the padlock shut, and walk along the beach. With Ben at my side, I stand and look out over the water, so deep and wide and timeless.

  When I turn and look at the cottage, I am certain for a moment that I see the faces of my grandfather and grandmother, and my two great-aunts who loved the lake; they’re floating over the roof, under the maple trees on the cliff, saying good-bye.

  In early August, the balance of my mother’s checking account—the last remnant of her savings—is only $3,300. The cottage sale happens in the nick of time, and I deposit $100,000 of the proceeds into Mom’s account. It will be easier to keep track of the bookkeeping if I continue to write all of the checks for her care from her checking account, rather than from my checkbook. In a few months I will learn that I’ve made a serious error.

  Rita, our neighbor living with Alzheimer’s disease, moves out of our community to another state, into an assisted-living memory care place similar to Elm Haven. Her children want her to be closer to them, and despite our dedicated neighbors who volunteered to spend time with Rita, the cost of providing twenty-four-hour home care aides had become prohibitive.

  I hear through the grapevine that, like Mom, Rita does well in memory care and smiles and laughs with the staff. She seems happier there than in her old home.

  Through these past few years Rita and my mother have followed the same slow transformation. Rita is no longer speaking, and over the past year my mother’s ability to talk has lessened to the point where she’s silent most of the time. When she does try to speak, she’ll say one or two words at a time, so muddled and soft I often can’t understand them.

  Today I’m surprised when Mom speaks more clearly than she has for months. Her sentences run short but cogent and crisp. We sit together in the woods beside my neighborhood and listen to six of my neighbors play their bongos in a drum circle. It’s a warm Sunday afternoon in mid-November. Mom sits on a folding metal chair, I on the leafy dirt beside her. For a half hour we just gaze at the sunlight filtering through the branches. We stroke each other’s thumbs. When I bounce my thumb to the rhythm of the bongos Mom laughs and points to my hand. She lifts her chin and turns her face to watch the people in the circle, smiles, and closes her eyes. When she turns back to me I say, “Do you like this, Mom?”

  She says, “Yes, I do!”

  Later she turns her big, bright eyes to me, taps the fingers of her right hand to her chest, and says, “I have...feelings.”

  “You’re happy?” I ask.

  “Yes.” She struggles a moment, then adds “Very!”

  This is my first visit with her in a month as I’ve been sick with the flu. When I’m away for so long I don’t know what I’ll find. I think of what people always ask me when I tell them my mother has dementia: “Does she still know you?” I dread that my mother might look through me with no recognition.

  I needn’t have worried. In the living room at Elm Haven, she knew me the instant she saw me. She reached for me from her chair, throwing her arms up as if she was tossing a beach ball. “Hey!” she said. A year or two ago she might have said “Hey! There she is!” or “Hey, there’s my girl!” but today it was just “Hey!” and the biggest smile in the world.

  Here in the woods today I can feel my mother vibrant beside me. In this moment we fly back through the decades, past the harsh words we shared as mother and daughter, the slammed doors and tears and phone calls cut short—it’s all gone. Nothing remains but the touch of her fingers to her chest and her smiling eyes.

  As I’m cleaning our house I find the gray metal box in which Mom kept her “important papers,” a fireproof container for her high school and college diplomas, her Social Security card, and a set of grades from college (all A’s and B’s). I squat on the bottom step of our stairs and open a small, white envelope marked “SAVE: Last letter from Mom.” It’s postmarked July 1976, to my mother from her mother, right before my grandmother died from a stroke at age sixty-five.

  As soon as I read the envelope, I burst into tears. Mom adored her gentle, quiet mother, and lost her without warning. I cry for her loss, her pain. I cry, too, in gratitude that, at least for now, my mother and I still have each other.

  In the box I also find my mother’s two divorce decrees. The decree for my father, from Chiquaqua, Mexico, says little except that they were incompatible and had been separated for a year, but the one for my stepfather spills details of her life with him that I never knew. I could sense that he didn’t care about me, but I never realized how unhappy my mother was with him. She rarely said anything bad about him, and they didn’t fight in front of me. To me it has always seemed like she decided overnight to leave him. She shielded me from the worst of it.

  I’d always thought Mom tolerated the rundown state of the old farmhouse, and have blamed her for tolerating it, thinking she was too weak-willed to demand better living conditions, but the divorce decree states that she fought with my stepfather for years to make repairs. It says that her income paid their bills while he spent his not on replacing the drywall on the exposed skeleton of the living room walls but on his hobbies—fishing and rifle shooting competitions. In addition to the bats, chipmunks, squirrels, and moles that I remember as living inside the house, there were also “spiders and rats.” It lacked proper insulation, “plaster and wallpaper fell off the walls,” and the heating system was “inadequate to heat the upstairs sleeping areas or the kitchen downstairs...Plaintiff became very emotionally distraught and dep
ressed as a result of the defendant’s refusal to provide adequate housing, and suffered from severe weight loss. Plaintiff had to take anti-depressant medication. Defendant has also acted in cruel and demeaning manner toward plaintiff and her minor daughter.”

  I think about the kinds of decisions I’ve been called to make, and will make, on behalf of my mother. I realize now that they mirror in intensity the decisions she made for my well being when I was a child. The major decisions of my mother’s life that affected me the most—to divorce both my ill, abusive father and my neglectful, abusive stepfather, to support the two of us on her own, and to put herself into an alcoholism treatment program—were incredibly brave decisions that I have only now begun to appreciate.

  Two and a half years after Mom’s move to Elm Haven, they can no longer keep her well fed. She lost three pounds one week, and three the week before, down to one hundred and eleven pounds. Dr. Claiborne can find no medical explanation other than dementia. Mom’s forgetting how to feed herself.

  On a Saturday at the end of lunchtime I stop by to check on her. Everyone else is done with their meal but I find Mom sitting alone at the small “cueing” table where the RAs coach her through the steps of eating. (As they explained to me on the tour, Elm Haven cannot, lacking an “enriched” assisted living license, spoon the food into her mouth.) She’s working her way through a bowl of ice cream, the one food she always remembers how to eat. A new RA I don’t recognize tells me, “Lots of times your mom doesn’t want us to talk to her. She looks away and ignores us. When she gets like that we just leave her alone.”

  That’s wise, I think.

  A year ago at my caregiver support group I learned that, to someone with dementia, a full plate with several foods crowded against each other can look unappealing and confusing. I started then to request that Mom be served her meals one dish and one utensil at a time, protein first. In addition to ice cream, she also gets high-fat meals and extra gravy. The chocolate liquid supplement she started drinking a few months ago gave her loose stools, so they switched to fortified juice three times a day. Each month Mom pays an extra $150 for the supplements and $120 on her personal care plan for the RAs to serve them to her.

  Today it looks like the RAs followed my request to offer one food at a time, as I see the individual bowls off to the side, but they lie untouched.

  I’d like nothing more than to deny it, but my mother is nearing the end of her stay in this lovely place. She’s declining again, now one of Elm Haven’s frailest residents.

  Much later, I figure out that she is crossing the boundary of Stage Six to Stage Seven of Alzheimer’s disease. In Stage Seven, “late-stage” Alzheimer’s disease, the person cannot remember how to use a spoon or fork and needs to be spoon-fed. Swallowing becomes difficult, and they must be fed soft, then pureed food. Though they may retain the ability to say a few words, they lose the ability to have a conversation; their muscles grow rigid and they lose the ability to walk; they need help with every movement, every task; they may lose the ability to smile, sit without support, or hold up their head. Eventually they lie rigid in bed, nearly unresponsive. Stage Seven can last, I will learn, from several weeks to several years.

  Part of me denies that my mother will end up like this, alive but stiff and unseeing. I cannot imagine it.

  Honesty

  In February, I bundle Mom up for a short walk outside. It’s cool but the sidewalks are bare of snow and the breeze is gentle. As usual, we leave her walker inside and I hold her arm. This past year she’s walked very slowly, gingerly, as if she might crumble at any moment. I can hear her breathe beside me in short little puffs, just as she did when we climbed together up the hill at the cottage. She catches my eye and smiles.

  So faint I almost don’t hear her, she says, “You’re nice.”

  “Thanks, Mom.” I’m not sure what to say so I point past the bare branches of the trees. “Can you see the lake down there without your glasses?” (The glasses have long since disappeared. When Mom first moved into Elm Haven, Diane, the director, and I agreed that it made no sense to get Mom new glasses. She would just keep taking them off, or lose them.)

  “Sure.”

  “See how it’s frozen down on the end there?”

  “Mm-hmm.”

  “Are you cold? You look cold.”

  Mom laughs and reaches her mittened hand for the scarf around her neck. I take that as a “yes” so turn us toward the door. I feel tears coming. I stop and face her. I take a deep breath and tell her I love her.

  She crinkles a smile and looks deeper into my eyes.

  “I know we’ve had our moments...you know, when we didn’t get along.” I pause, searching for recognition in her eyes. She squints slightly as if she’s confused or worried. My tears flow faster now but she’s quiet, watching me.

  “I just want you to know...I just want to tell you...that I love you. I really love you.” I squeeze her hand tighter. She smiles again but her eyes look serious.

  “I know all the things you’ve done for me my whole life. And I want you to know how much you mean to me.”

  I want to say “Mom, do you understand?” but I don’t.

  She still studies me. What’s going on under that concerned expression? I imagine that Mom can’t remember the complexity of our history. I imagine that she’s just trying to understand what in the world I’m talking about in this present moment. But I could be wrong.

  When I say “I love you” again, her expression lightens. She reaches for both my hands and squeezes them. With that movement, that simple gesture, I know in my heart that my mother is telling me how special I am to her.

  I ask for a hug. We hold each other for a long, sweet moment in the crisp, winter air.

  Lately I’ve begun to wonder if I treat my mother too much like a child in the way I speak to her and the subjects I choose. In her book Forget Memory: Creating Better Lives for People with Dementia, Anne Davis Basting writes that “age stereotypes can yield patronizing behaviors like speaking in a high perky voice [and] talking only of simple subjects (‘How about that weather!’)...” I don’t speak in a high voice, but I do try to be perky at all times. I purposely keep my banter light, as if Mom is losing, along with her language, her adult insight, wisdom and full range of emotion. In Learning to Speak Alzheimer’s, Joanne Koenig Coste writes that we should “assume that the patient can still register feelings that matter.” I have assumed that, beyond her steady love for me, Mom’s other feelings have grown fewer, less frequent, and shallow.

  John Zeisel writes in his book, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s, that when we communicate with a person living with dementia, “honesty means being yourself ”—not shying away, as I so often have, from sharing my true feelings in fear that I’ll upset my mother. He believes that a person living with dementia continues to grow in new ways, to develop new relationships and deepen old ones, and deserves to be treated as a whole, complicated, mature person.

  If we are honest about our feelings around a person with dementia, he says, they “can do this honestly as well.” Whether we’re sad or happy, the person with dementia will feel “particularly good when he can express a feeling, whether of concern, empathy, fear, or love”—in words, if they still have their language, or with touch, gesture, or facial expressions.

  Reading these three books this spring has made me consider for the first time that there’s probably much more going on in my mother’s mind than I’ve thought. With this realization I feel a deep regret and sadness. Two years ago, when Mom’s words first became jumbled, when she became incontinent, when she stayed in the rehab center, I treated her as if she was no longer here, as if her brain were so diminished she would be unable to feel lonely, lost, or scared. When she said things in the rehab center such as “Martha, how did you know I was here?” and looked close to tears, I assumed she was just confused.

  Maybe I avoided her true feelings because it would have b
een too painful for both of us, and I couldn’t do anything about them beyond visiting her nearly every day as I did. In fact, ever since she moved in with us five years ago I’ve found it easier to think of my mother as less than whole.

  I wish now that I hadn’t equated her jumbled language and physical deterioration with loss of self and awareness. I vow to talk to her as I would anyone else.

  On Valentine’s Day, Mom enjoys looking at new family photos; she laughs at a picture of Andrew, now age fourteen, and how he’s let his straight brown hair grow below his shoulders. I point to a family portrait we took in Ben’s parents’ living room on Chinese New Year. “There’s Ben’s younger brother, the one who walked you down the aisle when we got married.”

  She says something as soft and light as her breath. I hold my own breath as if to hear better, and in the silence the words form in my brain. I did hear her, and I understood. She said, “I have a brother”—tentatively, as if she wasn’t quite sure of the fact, or the thought made her feel sad because she missed him. This spark in her, this connection between us, makes me feel happy.

  “Yes, you do! Uncle Jack!”

  She nods.

  I say, “Your brother Jack,” and she smiles. Jack is seven years younger than my mother, and in robust good health. He tells me he bikes fifty miles a week and walks four miles a day. He still works part-time remodeling homes, and his mind seems perfectly sharp.