Inside the Dementia Epidemic: A Daughter's Memoir (12 page)

At first, the staff assigns Mom to sit at a table in the large, main dining room with two other women and a man from assisted living. When I join Mom for a few meals, her tablemates pick at their plates with grave expressions in complete silence. Mom’s social; she likes to ask people questions and to laugh. I can’t bear seeing my mother trapped with such depressing company three times a day every day.

I ask Daphne, the case manager, if Mom can be moved to a different table. Advocating for my mother, even in this small way, feels risky to me. I don’t want to develop a reputation right away as a bothersome family member. I fear the staff will resent my nitpicking and treat my mother less kindly, but soon I’m glad I spoke up. Within a week, Mom finds herself in a smaller wing of the dining room in the happy company of three talkative women from her assisted-living floor.

M
y mother seems to have forgotten that she ever smoked. Upon moving in she had to quit smoking cold turkey; their fire regulations require that residents walk twenty feet outside to smoke, and the staff does not have time to accompany the residents outside. This seems miraculous; she never seems to crave a cigarette, never even mentions her habit of fifty years.

F
or these first few months Mom has continued to take her medication alone in her room, one of only two residents in the assisted-living section to do so, Daphne tells me. Now, though, Daphne gently suggests, first to my mother and then to me, that it might be a better idea if Greenway kept track of her medication. Daphne and I agree that really we have no way of knowing for sure whether my mother remembers to take her medicine on schedule.
Apparently Daphne’s patient manner convinces Mom to cooperate, and Mom relinquishes control of this with the same grace she did her driving, bill paying, and cigarettes. Twice a day, she will wait in line outside the medication room for her pills to be handed to her in a paper cup with another small cup of water to swallow. I feel sad picturing my proud mother waiting in line like a schoolgirl, but I’m grateful that Greenway can monitor her medication more closely than I have.

B
efore she moved in, the maintenance staff painted Mom’s room ivory; the room looked fresh, with soft, clean carpet in a light rose. To keep my guilt at bay, I made her room more homelike, by hanging white, scalloped-edged café curtains to block the view of the parking lot and main entrance. The low, short curtains give her privacy but also allow an unobstructed view of the sky. I decorated with new brass lamps with ivory shades, and other items.

I left new wastebaskets in the bathroom and next to the desk, but found out later that the cleaning staff will not empty the trash unless someone—me, I guess—remembers to place the baskets outside Mom’s door in the hallway. Right then, with the waste-baskets, I sensed that Mom might need more help than Greenway could provide. But I pushed this thought aside, assuming the trash rule was just a quirk in an otherwise reasonable system. Certainly Greenway must have other residents with mild dementia who might forget such a weekly task.

M
om and I enjoy each other’s company more now that we’re not living in the same house. Over lunch at a nearby restaurant, she is so excited that she just talks and ignores her food. As I listen to her, I notice for the first time in many years that even without makeup, my mother is still beautiful. This beauty was hidden by the gauntness of early dementia when she lived alone, then by her
dark moods when she lived in my home. Today her smile is genuine—stunning—her laugh generous and usually directed at herself. Mom’s eyes, once a blue-green speckled with brown, have turned the sky-blue of bachelor buttons, growing lighter and lighter each year. Her nose is slim, her cheekbones high. Her shoulders are narrow and bird-like; I imagine her upper body a lattice of little bones, featherweight.

Mom pulls from her lap a yellow folder bound in a thick rubber band, full of notes, she says, to remind herself of what she wants to tell me. I lean forward on my elbows, curious, but when she opens the folder I can see that the papers are ancient bills, torn-out pages of magazines, and junk mail. On top of the pile, she has clipped a few small pieces of notepaper. Her chicken fajita grows soggy while she reads her notes. Two college students, young women, she says, have talked to her recently. The first one interviewed her for an hour outside on a bench under a tree. They had an “easy rapport,” Mom tells me, and though she doesn’t remember what they talked about, she remembers how much she liked that young woman. The student will come back in four months to interview her again.

A second young woman interviewed her in a more formal manner, with less chatting back and forth, but encouraged her to write down four “commitments” for her health. Mom tells me with enthusiasm that she has promised herself she’ll do the following:

1) Wear her one contact lens every day.

Great! I think. I worry that without the lens she will weave more when she walks, and fall. I realize now that Mom may have difficulty remembering the steps involved in putting in the lens. Today, though, she’s wearing it—terrific! Such a small thing makes me feel so relieved.

2) Walk for exercise. The second student says she will return and walk with her.

I think to myself that walking is great. I’d love to see Mom use the wood-chip trail through the woods next to Greenway, but I worry that even walking around inside Mom might weave and fall. Will the student make sure she doesn’t fall?

3) Make a dentist appointment.

4) Get a primary doctor.

The last two commitments embarrass me. Will this student think that my poor mother is abandoned at Greenway without a dentist or a doctor? Of course she has both.

“Your doctor is Dr. Claiborne, remember?”

“Oh, yes, I liked her. She mothered me. I’ll take that!”

Dr. Claiborne came recommended to us by the elder care psychologist as someone who would give Mom her full attention. The psychologist’s first choice was a geriatrician, but his practice was full. As in most cities, we have a shortage of doctors trained specifically to work with the elderly. Dr. Claiborne is not a geriatrician, but she listens patiently to Mom, looks her in the eye over her bifocals, touches her arm, and laughs with her.

A
nother day Mom tells me she has a new “best friend,” another student from the college, a young woman from Egypt with whom she has shared bits of her life story as well as the name of her favorite shampoo. I feel a bit jealous of their conversations, as I did with Lydia. Mom tells me that the students who come over and lead activities, polish the residents’ nails, or just sit and talk are “one of the two good things about living in that place.” The other good thing is the friends she’s made. She can’t remember their names but she clearly enjoys their company. She calls one friend “the woman with the white hair.” She’s started to hang out with this friend and others at night to watch old movies on the big-screen TV in the main living room.

I feel unsettled when she tells me that she’s reading less at night because “I have to watch these movies.” How long will it be, I wonder, before she spends all of her days, as so many of the other residents do, in front of the TV?

A
fter lunch, walking with me to the car, she turns to me with a smile and says, “Thank you for the repast, my dear. That’s the right word, isn’t it?” I agree that it is and we laugh. We both enjoy finding just the right word. I have been told that I speak as if I’m composing a short story in my head. I’m sure that comes from all the years of listening to my mother read to me as a child. When I speak or write I can hear my mother’s voice, her cadence.

O
ften when we drive back to Greenway my mother says, “Oh, do I have to go back to
that place
?” Sometimes she calls it a hospital and the residents “patients.” Sometimes she talks about the “children,” and how poorly they’re doing in class. I correct her and tell her that she’s a resident, not a patient, that it’s an assisted living place, not a school, but perhaps I shouldn’t—she’s right, in a way: It is more of an institution than a home.

O
ne week there’s an art exhibit in the Greenway auditorium of photographs of women with breast cancer, some of them naked from the waist up. Mom strolls beside me, glancing at the photos with a mild expression as if she feels no personal connection. I stop myself from asking her if she remembers having cancer. If she doesn’t remember, I don’t want to know. That would be yet another sign that she’s losing big chunks of her long-term memory, that her dementia is more serious than I want to admit.

A
few days later, I take a day off from work as one of my two annually allotted personal days to drive Mom two hours to her preferred breast clinic for her annual mammogram. Mom’s checkup is uneventful, but we have a bit of a mishap before the appointment. We arrive two hours before the appointment and decide to go out to an early lunch. Since our chosen restaurant won’t open for another half hour, we walk next door in the strip mall to a clothing store, where we pass the time flipping through racks of
blouses and pants. I don’t yet realize that I need to walk next to Mom every second. We separate for a few moments, browsing in different aisles.

I lose sight of her, then hear her groan. I turn a corner in the middle of the store and see that she’s fallen down a short flight of stairs. She lies crumpled on her side, her arms and legs flat and limp against the floor. One young clerk rushes over to help. Mom laughs it off and lets us pull her upright. She seems to be fine, no bruises, no cuts, no broken bones.

A few hours later, her left foot starts to hurt. When we get back to town she can no longer walk. I take her to the convenient care center where an X-ray shows she has a tiny fracture in her foot. As with her rib fracture when she fell out of bed in April, we are told that this fracture will also heal on its own. She will need to wear bandages and a boot brace for support, but won’t need crutches or a wheelchair. The resident assistants (RAs) at Greenway will change her bandages, and Mom will be able to put weight on her foot and walk.

A
fter Mom’s fall down the stairs, I worry more about her weaving as she walks. When I take her out, I cajole her into holding onto me. I remind her that she fell and broke her foot.

“No, I didn’t,” she laughs.

“Yes, you did. Remember that brace you had to wear? It’s on your desk.

“I’m not going to let you fall again on
my
watch,” I say.

Mom smiles and wraps her arm around mine, or interlocks our fingers. Her hand is tiny and slim and warm. There is not much weight to it, but there is still a firmness of purpose, as if the only thing in the world she wants to do is to be with me.

• • •

T
wice a year I treat myself to a weekend retreat for scrapbookers at a local hotel. I love having two whole days and nights to sit by myself. I immerse myself in trimming the photographs, remembering the stories behind them, writing the captions, and decorating the pages. The vellum sheets I slip over the finished pages protect the album from water, sunlight, and fire. I leave with something beautiful and permanent.

In October I finish a forty-page album about the cottage that I can’t wait to show my mother on my way home from the hotel. The album is filled with photos of our family from the late nineteenth century through Mom’s last years living alone at the cottage: earlier generations farming near the shore of the lake; later generations picnicking, bathing and rowing, fishing for trout, and steaming clams. One photo shows Mom at fourteen standing on the old dock, slim in a two-piece bathing suit, smiling coyly at the camera with her chin tucked into her shoulder. In others she’s splashing off the shale beach with a plump baby David; holding me as a toddler on her lap on the concrete steps next to my grandfather; then sitting with me, a gawky thirteen-year-old. She’s wearing her brown bathing suit and smiling at me as if amused, her legs tanned in the sun.

My mother’s family has been going to the lake for several generations. Her father’s parents, my great-grandparents, lived above the lake a few miles south and ran a small vegetable farm that supplied food for a private high school. They didn’t own property on the lake, but they were allowed to visit the school’s lake frontage. I have photos of my mother’s parents when they were courting, picnicking with friends on the narrow beaches, shaded by the pine trees and maples on the cliffs. My grandfather, who grew up on the farm, bought the current site of the cottage in the 1950s.
Back then it was legal to extend your property out into the lake. Grandpa rolled rocks off the cliff behind the cottage to deepen the beach and build up the yard. He planted trees (the willow is still there, ancient and wide as a redwood), and built the railroad tie breakwall.

In 1964, as Grandpa used to tell the story, he woke up one morning to find “the sun rising in the wrong window.” Cans of gasoline in the boathouse, a few feet from the cottage to the south, had caught on fire. By the time Grandpa ran up the hill to use the neighbor’s phone to call the fire department, the cottage had burned down. A year later, when I was a year old, the new cottage was finished—not much larger than the old one, but solid and comfortable with its pine paneling, a fireplace, and picture windows. A set of drop-down stairs led to a new second floor and two small upstairs bedrooms, and I remember being scared for years of those steep, narrow stairs.