Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Forget recent events

  Experience an impaired ability to perform challenging mental arithmetic—for example, counting backward from 100 by 7’s

  Experience greater difficulty performing complex tasks, such as planning dinner for guests, paying bills or managing finances

  Experience forgetfulness about their own personal history

  Become moody or withdrawn, especially in socially or mentally challenging situations

  Stage 5: Moderately severe cognitive decline. Moderate or mid-stage Alzheimer’s disease. Problems with memory, cognitive tasks, or judgment are noticeable, and the person needs help with daily activities such as cooking, cleaning and paying bills. The person may:

  Be unable to recall their own address or telephone number or the high school or college from which they graduated

  Become confused about where they are or what day it is

  Have trouble with less challenging mental arithmetic, such as counting backward from 40 by subtracting 4’s or from 20 by 2’s

  Need help choosing proper clothing for the season or the occasion

  Still remember significant details about themselves and their family

  Still require no assistance with eating or using the toilet

  Stage 6: Severe cognitive decline. Moderately severe or mid-stage Alzheimer’s disease. The person may:

  Lose awareness of recent experiences as well as of their surroundings

  Remember their own name but have difficulty with their personal history

  Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver

  Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet

  Experience major changes in sleep patterns—sleeping during the day and becoming restless at night

  Need help handling details of toileting (for example, flushing the toilet, wiping or disposing of tissue properly)

  Have increasingly frequent trouble controlling their bladder or bowels

  Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor) or compulsive, repetitive behavior like hand-wringing or tissue shredding

  Tend to wander or become lost

  Stage 7: Very severe cognitive decline. Severe or late-stage Alzheimer’s disease. This stage may last from several weeks to several years. The person may:

  Lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.

  Need help with much of their daily personal care, including eating or using the toilet.

  Need assistance walking, then cannot walk at all.

  Lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing becomes impaired.

  Death often occurs from pneumonia from aspirated food.

  In May of 2011 an international workgroup of more than forty top Alzheimer’s researchers will recommend that Alzheimer’s disease be broken down into three wider stages:

  The preclinical stage

  “Mild cognitive impairment (MCI) due to Alzheimer’s disease,” and

  “Dementia due to Alzheimer’s disease.”

  With mild cognitive impairment, problems with memory and cognitive ability are noticeable, but don’t affect the person’s ability to take care of themselves from day to day. Not everyone who has mild cognitive impairment will develop Alzheimer’s disease. In the third stage, “dementia due to Alzheimer’s disease,” independence in day-to-day function becomes difficult, then impossible.

  * * *

  After the visit with Dr. Gavin, I experience the mood and decision reversals that further reveal my mother’s instability. Mom calls me to tell me that she cried and cried all morning.

  “Why are you making me move in with you?” she asks. She says she called her neighbor Susan who told her, “You shouldn’t need help if you can still write your own checks.”

  I feel myself beginning to shake. This neighbor has managed to undermine all my tentative progress with Mom. Yes, she can write checks, but she forgets why she’s writing them, how much they’re for, and how to enter them in her check register. Mom cannot remember why she was excited to move in with us, and I have to explain it all for the twentieth time. I remind her of the fall, the disorientation on the dark road, the weight loss.

  Mom laughs—a nervous laugh—on the other end of the phone. “I thought I had to move because I have a few cobwebs in the house.”

  “No, it’s much worse than that, Mom. You seem”—I search for the right word; I want her to know how serious this is—“disconnected...from all of the trash around you.”

  Months earlier, I had been shocked by my discoveries as I tried to clean the cottage. My mother watched as I scrubbed a coating of black filth out of the refrigerator and shower, and cleared piles of little plastic bags of rotten trash off the kitchen counter. An old mattress, ancient clothing, bundles of newspapers, and boxes of paperwork crowded the living room. Between this garbage, Mom had left a narrow path, like a trench.

  In her downstairs bedroom, the extra twin bed sat covered with a pile two feet high of empty cookie packages and rinsed-out ice cream cartons, each item bagged individually in a clear, plastic gallon-sized bag and sealed with a twist tie. Now, I suspect that for some time she’s been eating little more than junk food. I don’t have the knowledge yet to know that this hoarding, and her food choices themselves, may be serious symptoms.

  Outside the cottage, leaves and pine needles partly hid mounds of empty bottles and cans that Mom dropped over the steps rather than carry to the recycling bins in the boathouse. When the landscape contractor I hired cleared away the multi-flora rose, burdock, and sumac trees that thrived on the neglected lawn, his workers rescued several pots and fry pans that Mom set outside rather than clean.

  Mom said, “I can pack the trash in my backpack and walk it up the hill to the car and take it to the dump.”

  I pointed out that she had not done that in a long time, and the fact that she was suggesting it reflected how disconnected she was from what she imagined she could do and the reality. In my impatience I clipped my words. I felt I had to be blunt.

  Now, on the phone, I remind her of the reasons to move to our home. “It’ll be like a new beginning.”

  She’s quiet on the other end. After a moment she says, “As you’re talking, I’m remembering the reasons.”

  “And Dr. Gavin shares my concerns, too.”

  “I tell you, honey, I couldn’t believe how old I looked in the mirror this morning—so much older than just a few weeks ago.”

  I take a deep breath and try to keep my voice upbeat. “We can start with a two-week visit, Mom, to see how it goes. I’m not kidnapping you forever.” This is a lie. Ben and I have no intention of bringing her back to the cottage, no matter what happens. The lie slips out before I know what I’ve said. Mom and I always try to be honest with each other, but now I want to ease her fear.

  “I bought you new towels and washcloths today. And Ben set up a computer for you. We’ll get you a library card.” My husband, a gentle and generous man, has agreed to have Mom live with us because he knows it’s what I want. In the back of my mind, I also think it might be good for our children. Until I returned to work last summer, I was a stay-at-home mom, and at ages seven and nine, our kids are used to my undivided attention. Perhaps with Grammy at our house, Andrew and Morgan will learn that sometimes other people need more attention than they do. The focus of the family will shift away from them, and they will learn self-reliance. This notion floats into my head as if a long-ago lesson of my own.

  “Oh, that sounds good,” Mom says. “I don’t know why I was so worried.”

  In the course of our three-minute conversation, Mom swings from anxious resistance to comp
lete acceptance. She even takes some initiative.

  “Why don’t we go over my list of things to bring?”

  There is one more very serious factor that may explain her behavior and my delay in acknowledging its seriousness: grief. We have both been shell-shocked by a recent tragedy.

  Last summer, her only son, my brother, died without warning, and since then, Mom has looked frail, as if ready to relinquish her own tenure on life.

  David was fifty-two, schizophrenic, diabetic, and alcoholic. He weighed four hundred pounds, wore his gray hair past his shoulders, and had a long, thin, gray beard. In the late 1960s, when he was sixteen and I was four, Dave left home to live on the streets of New York City and, as my mother would tell me years later, “to try every drug he could get his hands on.”

  For years, he lived in another city several hours away in a single-room apartment. He was never able to hold a job. When Dave was a young adult, Mom tried hard to get him into treatment and work programs. After years of effort, she decided that there was only so much she could do for him if he continued to drink. She realized from her own 12-step program that she could not help him if he didn’t want to help himself.

  Once a year, beginning when I was a teenager, Mom would drive me to see Dave and take him out for lunch and to a department store. Sometimes, we met Dave in the entrance of the county’s mental hospital. He was skinny then with greasy brown hair. In the passenger seat of Mom’s orange VW bug, he told jokes in his soft, gentle voice and jiggled his cigarette on his knee. I barely remembered Dave, and thought of him as a distant, troubled uncle.

  Dave’s ex-wife, Joanne, lived in her own room across the hall from him, and they looked out for each other. One morning, he didn’t take his diabetes medicine and later that afternoon, after he lay down for a nap, Joanne found him dead. As he never forgot to take his medicine, Joanne thinks he neglected to take his medicine “on purpose.” I can only guess how distraught he may have felt living the same life day after day for years and years, going nowhere.

  Joanne had Dave cremated, and spread his ashes over the summit of his favorite city park. Mom and I visited Joanne but did not attend the ceremony at her church. I assumed that my mother would plan some sort of ceremony, too, for us. I did not yet realize that she was incapable of organizing anything.

  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?

  Moving In

  In 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.

  Almost 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.

  When 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 w
e 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.