Inside the Dementia Epidemic: A Daughter's Memoir (5 page)

Mom had already made her own funeral arrangements, some fifteen years earlier. She told me she wanted to be cremated, and that she envisioned that I would hold a simple celebration of her life at the cottage. After Dave died, I thought more about how important it is to appreciate and take care of family. Why “celebrate” a life after it’s over? Why not help make that life as good as it can be while the person is still alive?

I
n early March, we move my mother into our home. The snow has melted, so we could drive down her road and bring a few pieces of her furniture to the spare bedroom off our kitchen.

A few days later, I help her pack. To my surprise, Mom seems happy and calm; I half expected her to change her mind at the last minute. As Mom searches for the dog’s leash and muzzle, a box of tissue, and her sunglasses, I hold my breath, anticipating her frustration with packing, or her annoyance with me standing there, waiting. But she seems fine. Trinka, Mom’s ten-year-old miniature Schnauzer, growls in her tiny, gray kennel cab amid the piles of recyclables in the living room. She’s muzzled to prevent her nonstop barking. The dog is unused to other people and I’ve always been a bit afraid of her.

Then—another horrible discovery. Thirsty, I look for a gallon jug of drinking water in the refrigerator or cupboard and find none. Mom usually filled old milk cartons with free spring water from a spigot outside the local supermarket.

“I don’t do that any more,” she says. “I just drink the tap water.”

My stomach flips. Pumped from the end of a pipe about thirty feet off the shale beach, the lake “gray water” is filtered but intended only for secondary use such as cleaning, not for drinking. I imagine an invisible broth of algae, fish scales, and gasoline.

“When did you start drinking the lake water?”

“I don’t know. I’ve been doing it for years.”

I wince. I might have noticed this a long time ago, if I had been paying attention.

Later, Mom pauses in her rummaging and smiles at me from across the kitchen. “Thank you so much for doing this for me.”

“It’s okay,” is all I can think of to say. A fog thickens in my head, much like the cool mist on the lake outside her window. This fog is a familiar feeling, a kind of dampening, a fuzziness that softens my brain whenever I’m plunging into a major change in my life. I recognize the feeling but don’t stop to think about what I’m doing. I want to help my mother but I have no real plan. My eyes flicker across the table at her and I manage to return her smile.

A
lmost immediately, when we stop at the dog groomer’s house where we are going to leave Trinka for a few days, it hits me that I don’t really like being in charge of Mom’s life. A “what have I got myself into?” feeling washes over me. This is it. I’m taking Mom away from her own life, her own territory, her own friends. I’ll be following her around, helping her, waiting on her—forever. Introducing myself to the groomer, I try to hide behind my mother to show this old friend of hers that I do not consider myself in charge of my mother—not yet.

The groomer, who has known Mom for twenty-five years, whispers to me when Mom turns away, “I’ve been worried about your mom for a while now. What you’re doing is a good thing.” With sad, kind eyes, she smiles and pats me on the back.

“You’re a good daughter.”

I find myself wondering why this groomer, or any of my mother’s other friends, has never looked up my phone number to call me and express their concern.

W
hen we arrive at our house, my seven-year-old daughter, Morgan, greets us. She’s wearing her purple party dress and ivory tights with silver butterfly barrettes. She and her dad have baked a chocolate cake and decorated it with vanilla frosting and written in green icing, “Welcome Home Grammy.” Andrew is off playing with friends. Mom gives Morgan and Ben a big hug.

Mom seems to like her lilac-painted bedroom. She has a private bathroom with a shower, her favorite framed photos, her radio for NPR. I’ve made up her bed with a new purple and mauve quilt.

The first thing Mom wants to do is unpack, ever so slowly and carefully, and designate specific places for her comb, brush, socks, checkbook, dog leash, tissues. I hover in her doorway. “Can I help?”

“No, sweetie, it’s fine. I’m just getting organized.” I want her to look at me, to include me and talk with me, but she looks down at her work. I want her to stop being so particular about
things
.

It’s not a good omen that, within an hour of her arrival, I already wish she were different.

She lines up her bottles of medicine along the top of the bureau. She insists that she can still keep track of her own medication and I do not question her.

Mom stops for a moment to admire the view out her window into our tiny front garden. “When I sit at my desk,” she says, “I’ll be able to watch the neighbors come and go!” I smile because that is exactly the image I’ve had of her—sitting at her desk, working on her bills, gazing at the garden and neighbor houses as she used to watch the lake from her desk at the cottage—not as breathtaking
a view, but something. I picture her at her desk or reading in bed, just as she did for much of the day at the cottage.

When Mom looks out her window she can see a cluster of four or five of our neighbors’ small houses and the common space between the houses with its picnic table, cherry trees, rhubarb garden, and large, round boulders for kids to climb. Our community lies in the middle of old pastureland eight miles from the city. Parking is set away from the houses to leave the common areas pedestrian-friendly and safe for children, and we enjoy a large pond where we swim and ice skate. Though sometimes mistaken for a commune, our community is middle-class; many residents hold advanced degrees, and we represent a wide range of personal and spiritual philosophies. We are teachers, professors, computer programmers, musicians, stay-at-home parents, consultants, social workers, carpenters.

Ben and I first learned of this community in a newspaper article back in New York City. We were outgrowing our tiny co-op on the Upper West Side and longed for a college town where we could raise our children. A city boy, my husband felt nervous about moving to the “country.” Ben was born in Hong Kong and raised, since age six, in Manhattan’s Chinatown, then Brooklyn and Queens. He was willing, though, to do anything to keep me happy. Ever since our daughter Morgan’s birth, I’d been struggling with post-partum depression. I wasn’t sad or unable to function, but I felt sudden waves of rage. By the time we considered moving, I felt much better on an anti-depressant.

I was drawn to the intentional community’s acres of open space, which reminded me of my childhood in the Adirondack Mountains. I’d never lived in suburbs and wanted to avoid them, and this community combined the best of the country with the best of the city. I was intrigued, as well, with the possibility of truly knowing my neighbors. Ben liked the fact that the college town attracted
an international crowd and he wouldn’t be the only Asian. He was less interested than I was in the social aspects of community, but he supported me in making the move.

Now I realize that, when I first moved here, I thought of the neighborhood as one large entity—a kind of parent, a mother figure. I assumed I would develop close relationships with almost all of the residents, that we’d each help and support each other. For the first few years, I worried constantly about fitting in with the other parents, making sure our children got along with the other kids, and contributing our share of time to the needs of the community.

Now I hope that Mom will make friends here and go out to lunch with them on occasion, but I don’t expect my neighbors to take regular shifts to keep her company. I suspect that whatever Mom needs, I will have to provide myself, or arrange for her, using as many resources in town as I can find. Will I be able to manage it? I think so, but at this point, I am still innocent of the realities. I will soon realize that her care will demand far more.

A
fter four days, Mom and I are already getting on each other’s nerves. Mom barely eats. Ben and I make a delicious stew for dinner, but when I stand outside her door and ask her to come out, she says, “Go away.”

Trinka is an immediate problem: Mom lets her in through the back door onto the carpet without wiping the dog’s wet paws. More serious: When the dog nips at my little girl and her friend, Mom says nothing. She sits in a daze.

“Mom, you need to discipline the dog.”

Mom grabs a newspaper, rolls it up and starts whacking the dog.

“Mom, stop. When I said ‘discipline’, I didn’t mean beat the dog.”

She lowers the paper.

“Maybe we can lock Trinka in her crate when there are kids visiting,” I say.

Mom shakes her head and scowls. “Trinka lost all her manners at that kennel.”

“No, she acts this way because she’s been living alone with you at the cottage for ten years. She’s not used to being around other people, around children.”

Mom is silent. Later, she goes into her room and refuses to come out for dinner. I knock, then open the door.

“Is there a problem, Mom?”

She’s lying on her bed reading and doesn’t look up.

“You.”

T
here’s a silver lining. When we snap at each other, I retreat to the hutch in the dining room where I store piles of laser paper printed on one side, and a stack of half-empty spiral notebooks. In the ten years since graduate school, I’ve written nothing, but since Mom moved in, I find myself scribbling on these scraps of paper. I hide notebooks in every room and carry one in my backpack to write on the bus on my way to work. They are my emotional safety valve.

A
s our lives continue to interweave, my first rule is Danger Control.

My first task: Take away Mom’s car keys.

I’m worried that, while I’m not looking or I’m at work, Mom will walk out to her little green Honda and try to go shopping for cigarettes or chocolate, or maybe return to the cottage. I have to tell her that she should no longer drive, that I can take her wherever she wants to go. I dread this conversation. I fear her anger and indignation.

I knock on her bedroom door and find her reading, lying on her bed. She’s mad at me again. Rather than come in, I stand in the doorway to tell her the bad news.

Mom looks up from her book and her eyes shoot darts. “Who says I can’t drive? What makes you an authority on whether or not I should be driving?”

“I’m not an authority,” I admit. “Dr. Gavin was very concerned about your driving.”

She glares at me, unconvinced. I try another tactic. “As your only child, your only family member left, it’s my unpleasant job to tell you that you can no longer drive.” My words are formal and stiff. I want her to have sympathy for me as the person bearing bad news. I’ve read online that if you make it clear to a person with early-stage dementia that their behavior affects you, that it makes things more difficult for you and causes you stress, they are more likely to cooperate. I’m trying to be good at this.

Mom sighs.

“Plus, the traffic in town is awful,” I hasten to add.

For the past ten years she’s hated driving in city traffic. I don’t tell Mom the real reason she shouldn’t drive: her inability to be aware of the drivers around her and to make quick decisions. People in the early stages of dementia negotiate the road only out of habit. I don’t need to spout facts, as it turns out.

“You’re right,” she says. “I don’t want to drive in town.” She shakes her head and looks down at her book. “I’ll never find my way around.” With another sigh she picks up her keys from the bedside table and holds them out to me. I step in and take them.

“Thank you,” I say, and wait a moment. There’s more to say, and I dread her response to the next step: “Will you let us cancel your insurance and take off the plates? Will you let us sell the car for you?” I doubt she’s ready to let go of the car itself, the symbol of her independence.