Inside the Dementia Epidemic: A Daughter's Memoir Read online

  “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.

  • • •

  Twice 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.

  My favorite place to sleep was in the twin bed closest to the windows in the upstairs bedroom overlooking the lake. I’d crank open the windows and tuck myself under the musty wool Army blankets. The wild night air smelled of fish scales, seaweed, and miles of deep, roiling water. With yellow light from the kitchen glowing through the slit of the stairs, I drifted off to the lapping of the waves on the shale, the adults laughing below me, the clink of liquor glasses on Formica.

  I arrive at Greenway with the cottage album to find Mom skimming a novel in the tiny, two-room library. She still reads, but has trouble remembering anything longer than a newspaper article. She often waits in the library for lunch and dinner to start across the hall. As usual, Mom greets me with a big smile, and her hair is brushed and neat, her bright pink sweater youthful-looking over her slim hips. She coaxes a friend to sit next to her and look at the photos with her. Catherine is a quiet eighty-year-old with flyaway brown hair and a lop-sided black headband, one of the women who share Mom’s dining room table. The three of us sit at the only table in the library, me leaning across one side, Mom and Catherine together with the album between them on the other side. Mom points to each photo, and the long-term memories must come easily on this day because she explains the history to Catherine in the focused, teacherly manner she must have used with her students years ago.

  Every few minutes, my mother cranes her neck to check the clock over the bookcase: She cannot be late for dinner at 4:30, she says, or “they will come looking for me.” Dinner is so early for the assisted-living residents, I suppose, to make room later for the independent residents. Five more residents slip into the library, not to read but to sit, hands folded in their laps, in a row of chairs against the wall, to wait until the meal is ready. I glance over at them to see if perhaps they are enjoying my mother’s little history of our family, but only one man is paying attention, and he looks annoyed. The others, all women, stare down the hall toward the dining room.

  Will my mother end up like them? I wonder, waiting for dinner with nothing to do, no interest in reading, no reason to talk to anyone? At this moment my mother seems more alive than anyone else in the library—maybe, I imagine, in the whole building. She blazes like a cardinal in a flock of barn swallows.

  Role Reversals

  As the months pass and soften my memories of the stress and tedium of Mom’s time in our home, the guilt I managed to bury when I moved her to Greenway begins to resurface. I start second-guessing myself. Is assisted living the best place for my mother to live? Have I abused my power to influence her decisions, consigned her to a hollow semblance of life? I never thought I would resort to segregating my mother from the rest of the community in an old age home. It feels like defeat, like giving up, and it nags at me.

  In November, as an employee at the university I take an undergraduate writing class on “The Art of the Personal Essay.” I quickly find refuge in writing, but also discover it can be a direct conflict with any extracurricular activities with my mother.

  I call my mother to tell her that I cannot take her to visit the cottage today as I’d promised, saying, “I’m not feeling well and I have an essay due.” I picture her sticky-note on her desktop calendar (“Martha, cottage”), and to make the call I have to fight an overwhelming surge of guilt.

  Mom surprises me. She says, “That’s fine, honey. Feel better.”

  Relieved, I return to my laptop. I tell my kids that if they interrupt me I will have to bite them. “Oh—in your thoughts,” Andrew says. “That’s okay.”

  When I am completely still except for my fingers tapping up and down on the keys, when I am completely absorbed by the process of writing, and hiss at Andrew and Morgan to be quiet, my only fear is that my children may remember me when they grow up as a frowning, snarling mother in an armchair, drunk on words.

  Once, while I spend four hours writing an essay, Ben does all the work of getting Morgan ready for a sleep-over: setting up the tent in the backyard, inflating the air mattress, cooking dinner, making them a snack, walking Trinka before bed. At 9:00 he growls, “Why do I have to do all this crap?” My steadfast, mild-mannered husband does have his limits.

  Another day, the dirty dishes are overflowing, the laundry is backed up, Trinka is leaking pee on the carpet, and Morgan is begging for a school friend to come over to play. I’m supposed to email another essay to my classmates by 4:00, but I don’t feel like writing. The day before, I spent the meat of the day running errands with my mother. At my kitchen table, we went over her bills.

  “I think it’s time...for me...to hand the cottage over to you,” she says.

  “You already did, Mom. Last year. We went to the lawyer’s office and you transferred the cottage to me.”

  “I don’t remember.” She looks as if she’s about to cry.

  Later she says, “I want to go home, but not back to that place.”

  With another prick of guilt I pretend I don’t hear her. There’s no point talking abou
t “that place” again; Greenway seems like the only option. Another move might hurt her more than help her.

  Ben can see that I’m exhausted so he offers to drive Mom back to Greenway. I hope that Mom won’t mind my absence, but she says, “You’re not coming? I need you. I want you to take me.” She looks at me with a sheepish smile.

  “You’re like my mommy. I need my mommy.”

  My stomach twists. In that moment I don’t want her to need me. I don’t want to be the only one she wants. I don’t want to do this anymore.

  Her smile collapses and her brow wrinkles. “How awful...that you have to be my mother and I’m the child.”

  I take a breath, and feel my annoyance slip away as quickly as it appeared. I didn’t think Mom was aware of this shift in our roles. I feel both gratified that she has finally recognized this shift, and awkward, embarrassed, as if I’ve been caught pretending to be something I’m not.

  “No, Mom, you’re still my mother, and I’m still the child.” A quick dissembling, but, at the deepest level, true. I give her a weak smile and loop my arm through hers. I feel tender toward her again, and decide to bring her home myself.

  As we walk up the path to the car she turns to me. “I don’t know...how all of this...is going to work out,” she says.

  “I know, Mom.” I’m at a loss for words. I stop to hug her and walk the rest of the way to the car with my arm around her shoulders. It’s first time I’ve ever held my mother that way. Sometimes the only thing I will be able to do for her, I think to myself, is to be close to her, to touch her.

  I drive her back to Greenway feeling fiercely protective and close to tears. In the dining room, where dinner is about to start, I find no staff members to give my mother a hug as they often do. An RA appears at a distance and glances at us but doesn’t say hello. Mom’s tablemates fiddle with their napkins, oblivious.

  Alone in a Crowd

  A year after Mom moves into Greenway, I extend the gaps between my visits from one week to two. Looking back, I’m surprised that I visited so infrequently. In these early years of my caregiving journey I am still in denial about the extent of my mother’s decline, and still estranged from her. Each of us has been used to living separate lives, and once my mother settles into her own routine at Greenway, I return to mine. I make sure her bills are paid, drive her to appointments, and take her out for an occasional lunch, but the rest of the time I stay away. I convince myself that she has a full life with new friends, her books, the craft classes, concerts, movies, and visiting students. Though the “assistance” in this particular assisted living facility seems sparse, I assume that Mom is getting whatever daily help she needs. But is she? I don’t know, and years later I’ll regret this lapse in my vigilance.

  Even though I resist visiting, when I’m away from my mother I fear that when I return she will no longer be there, that I will lose those parts of her—her sense of humor, her ability to find grace in any situation, her gentle laugh, her encouragement to “keep ’er cool”—that have mothered me even when I haven’t felt particularly mothered.

  On the other hand, it has been a peaceful year with Mom, a time to catch my breath.

  The value of Mom’s mutual funds has risen over the past year by $9,000. In April, I have to tap into the funds to continue to pay for her room at Greenway. I cash out $10,000, leaving her with $92,00 in mutual funds and $29,000 in her IRA. The meter is quickening and I dread the day we come to the end of her funds. What then?

  In the fall I take my mother to a reunion of my father’s side of the family. Mom’s ex-sister-in-law, Nadine, will be there. Mom hasn’t seen her in forty years but they used to be close friends. Nadine told me last year at the reunion that she can’t wait to see my mother.

  My father will not be there—his behavior with his mental illness is so disruptive that his second wife, now his ex-wife, has stopped inviting him. My half brother and two half sisters will be there with their spouses and children. Over the past twenty years, I’ve visited my half siblings only a few times, and my mother has never met them. We’ll gather in a pavilion at a state park two hours away, the same place they held their reunions when my mother was married to my father. Part of me hopes that she will remember this place, the gorge and the waterfalls, and feel happy.

  When I call the Greenway RAs to ask them to get Mom up early for the reunion, I expect it to be a short, simple call. Instead, Sharon, the head daytime RA, tells me she will “try” to get Mom up but “sometimes it’s very difficult.” And she adds that, oh, by the way, “We’re having an awful time getting your mom to take showers. We don’t think she’s doing it on her own, and she won’t let us help her with it.” I agree that Mom doesn’t want someone with her when she’s naked. Last year, Mom called me in fear that one of the new RAs would “make” her strip and take a shower.

  Sharon says that they are keeping track of whether Mom seems clean. “Maybe she’s doing a French bath,” she says, “like some older folks are used to doing.” Your mom looks clean, she says. Have I noticed anything? A few times over the past year, I say, I’ve noticed that Mom smelled a little, but not lately. Sharon tells me as well that Mom refuses to let the RAs into her room to get her dirty laundry; they have to sneak in when she’s out of the room, “because we have to get it done,” and then Mom is grateful when they return the laundry. Yes, I know, I tell her, she doesn’t like anyone coming into her room, and she forgets that she doesn’t have to do her laundry herself.

  When Sharon mentions the shower issue, I immediately feel a twinge of anxiety. I do not yet know that this is a typical part of the dementia progression. My mind starts working on how I can help the situation, what might happen next. I want to know about problems, but I don’t expect to be told about my mother’s declining ability to take care of her personal hygiene when I’m calling about a routine issue such as a wake-up call. I’d prefer that someone call me and arrange a time when I can talk.

  “I wish I’d known about this before,” I say.

  “I’m sorry. I thought Daphne had already called you. Daphne really has a way with your mom, you know. Maybe she thought she could talk to your mom and get her to shower more often.”

  “Sure. That makes sense.”

  Daphne probably remembers how overwhelmed I felt when I first moved Mom into Greenway. I had asked Daphne to please handle as much as she could without asking me for help. An example was explaining the rental agreement to my mother. Daphne spent hours going over the contract with my mother, again and again, because Mom always wants to understand paperwork even if it makes no sense in her brain. Daphne told me afterward that she had never before spent so much time explaining the rental agreement to anyone. I had told her that my patience for such matters was also exhausted.

  Now on the phone, Sharon tells me about her own mother who had dementia, and was “much, much worse” than my mother. “I was always on the phone,” she says. “Your mom is really doing very well.”

  I know she wants to reassure me, but I feel as if she’s being condescending, as if I have little to feel stressed about and am being a bit of a baby. I measure the level of my anxiety about being my mother’s caregiver by comparing my new role to our hands-off relationship in the past, not to how I might feel if her condition were to become worse in the future. I don’t yet understand—how far and how fast will my mother decline?

  My mother enjoys the two-hour drive to the park, but once we’re there, hardly anyone talks to her, not even Nadine. Nadine is the same age as Mom but looks twenty years younger. One of my cousins asks me if Mom has Alzheimer’s disease. I spend the afternoon holding my mother’s hand to weave between the picnic tables, to make sure she doesn’t trip on a table leg or a small child. I find her a warm spot next to the fireplace and bring her hot chocolate and plates of food. When Mom gets up to walk around and I grow tired of following her, I can see her talking with Nadine. Nadine smiles, points out the door toward another building a hundred feet past the parking lot, then
turns away from Mom. I figure out that Mom is looking for the bathroom. As she heads outside by herself I sprint the length of the pavilion to gently grab her arm and steer her around the broken chunks of sidewalk.

  I leave disappointed in our relatives for ignoring Mom, but perhaps it’s more of a challenge than I realize for people to connect with my mother. If I met a relative I hadn’t seen in forty years or had perhaps never met, and they looked as pale and lost as my mother did today, I probably wouldn’t go out of my way to talk to them either. I’d be nervous about what to say, perhaps even a little afraid.

  The reunion makes me wonder whether something similar happens at Greenway when the independent residents mix with the assisted-living residents. I wonder if the staff encourages the two groups to interact or if they remain apart like boys and girls at a seventh-grade dance? Though Greenway has a new activities director, she serves the whole facility and can’t possibly have the time to give the assisted-living residents the attention they need. For extra help, the facility relies on the student volunteers; in rare instances families hire private aides. Residents such as Mom, who shy away from activities, just sit in their rooms or watch TV most of the time.

  One day, Daphne, the case manager, calls me to convey some of her concerns related to their annual report for the state. Her main concern is that when she does sign Mom up for activities and remind her of them, at the last minute Mom refuses to go.

  “Your mom’s dementia is no worse than several others’ here,” she says, “so I’m not sure what’s going on.”

  She tells me that she’s paired my mom up with a student again, but it has been difficult for the girl to see Mom because Mom sleeps late in the morning and reads in bed for part of the afternoon.

  She asks about Mom’s medication for depression and whether she’s seen on a regular basis by a psychiatrist. I tell her that Mom had a mental health evaluation a month earlier and was judged to not be depressed and to have a mild memory impairment of about ten to twenty percent, enough to make taking care of herself difficult. I remind her that Mom also saw a psychiatrist when we were making the decision to move her to Greenway a year ago.