Inside the Dementia Epidemic: A Daughter's Memoir (28 page)

I
realize that I haven’t seen Henry in awhile, the handsome resident with the thick, salt-and-pepper hair who shuffled into Mom’s room when she first arrived. One Saturday, as I help Vickie, the activities director, finish another photo album, I see Henry in the pictures, smiling at the camera.

Vickie joins me, harried but as upbeat as always, between shoveling the sidewalk and dealing with a sewer emergency. (On weekends there’s no maintenance staff; as the administrator on duty she has to handle everything.) A young grandmother close to my age, tall and heavyset with long brown hair, she grows so attached to the residents that when they have to leave she visits them in their new facilities and has a hard time keeping to herself her opinion about where they “end up.”

When I ask about Henry she takes a breath and says, “Yes, he’s no longer here.” She pauses. “He needed intensive care.”

“He was a sweetheart,” I say, and she agrees, her eyes sad. I want to ask her what happened to him, what kind of care he needed, but I don’t.

Vickie points to another picture in which two women nap together on the living room couch, their heads touching. “And she’s passed away,” Vickie says, touching her finger to the woman on the left, a resident I don’t remember.

“You get so attached,” she says, and I nod.

In the pile of photos for the album I find two of my mother: She’s sitting in the living room, listening to a band playing acoustic guitars. She looks unbelievably thin, with an almost ethereal expression on her face, her eyes half closed, her mouth curved in a smile.

I see not only her luminous presence, her enduring self, but something vulnerable, fading, closer than I would like to admit to the frailty I see in the faces of Henry and the woman who died. I realize that even though I’ve worked hard to make sure my mother enjoys the quality of her day-to-day life, I need to think more about her wishes for the end of her life. That stage may arrive more quickly than I anticipate.

Mothering my mother, I realize now, is not just about doing things, giving her things, or even about being there. It’s also about facing head-on the larger “what if ’s.”

W
hen I meet with Diane, the director, and Michelle, the head nurse, for another care plan meeting, I remind them that my mother is Do Not Resuscitate, and ask that, if they dial 911 for my mother, they call me immediately. I don’t want an ambulance crew doing anything to my mother that she wouldn’t have wanted.

Diane and Michelle promise to call, of course, but they seem uncomfortable; they merely suggest that I make sure that I’ve given them New York State’s “Non-Hospital Order Not to Resuscitate
(DNR)” form, signed by her doctor, which I have. I leave unsatisfied, worried in an abstract kind of way.

A few weeks later I read in the
New York Times
about a new advance-directive form available only in New York State from an insurance company, bright pink to catch the attention of ambulance crews. Called the MOLST form (“Medical Orders for Life-Sustaining Treatment”), it’s been available since the previous summer but I hadn’t heard about it. I order the form and the supplemental version for people who no longer have the capacity to consent, and schedule an appointment alone with Dr. Claiborne, Mom’s doctor, to fill it out and get it signed.

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.

B
y 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.

I
n 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.

R
ita, 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.

A
s 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 depressed 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.