Inside the Dementia Epidemic: A Daughter's Memoir (8 page)

M
y relationship with my mother has always been complicated. While there may be no “normal” families, ours was more idiosyncratic than most. This fact contributed to the late diagnosis, and the delays in my own comprehension of my mother’s condition.

Mom told me years ago that her doctor had encouraged her to give up teaching at age forty-nine because her depression and anxiety were getting worse. Two years before that she’d put herself into treatment for alcoholism, and she needed a chance to work on her sobriety. She’d been a heavy drinker most evenings since before I was born, possibly to self-medicate.

As a teen, I’d cook dinner and wash the dishes while Mom sat in our living room drinking White Russians. Sometimes, she’d pass out on her bed before dinner was ready. She was not a mean drunk; she just sat there every night in her cream-colored upholstered chair, with her ankles crossed on the matching footstool, lesson books and papers to be corrected piled on her lap, a dark
anger in her eyes matching the cloud of cigarette smoke around her head. Sometimes I’d sit on the couch opposite her chair and do my homework—I was a top student, a self-motivated nerd. Instead of talking to her, if I felt annoyed about something I’d glare at her with my “evil eye,” as she called it.

My mother was authoritarian—her word was law; I knew that she’d tolerate no anger or back talk. I’m not sure what the implied threat was, but it worked. A handful of times when I was younger, if I defied her or misbehaved, she would spank me with a wooden spoon. In the heat of the moment she’d smack me once on the bare bottom, leaving a stinging red oval. Once, when I was a teenager, she slapped me on the face. She had told me to sweep the basement stairs, one of my weekend chores, and I refused to do it immediately. We argued, and she hit me. I don’t remember her apologizing, but she did look shocked at her own behavior. My memory of these few incidents left me afraid to challenge her.

Mom told me years later that she was never comfortable with teenagers; she preferred younger children—that’s why she never taught above the fourth grade. Teenagers, she told me, could “see through” her, and that made her nervous. When a teacher asked me who my role model was, I said I did not have one, but my mother was my “anti-role model.” I promised myself that I would never grow up to be my mother.

Even after she stopped drinking my mother intimidated me. She later called those years her “dry drunk” period. I see now that part of the reason I left home as soon as I could was not only to get away from her, but to prove that I didn’t need her, that I could be independent.

I
n her first decade at the cottage, my mother flourished as a member of the small nearby community. She once again practiced the clarinet she’d played in high school, and joined the town band; she
played a Hungarian princess in a theater production; she served as secretary for the local library’s women’s study club. In addition to volunteering as a master gardener, she studied landscape architecture and painted watercolors of pine trees and sunsets. She cross-country skied and did water aerobics. She worked part-time, first as a receptionist at an alcoholism counseling center, then as an alcohol education coordinator, and as a clerk in a bookstore. She continued going to 12-step programs, and invited her sponsors and friends to the cottage for visits. One of her closest friends, a Mennonite who lived on a neighboring farm, would drive her horse and buggy to the top of Mom’s road and walk down with her five children to swim fully clothed.

Photos from that time show my mother carrying an extra thirty pounds. When she stopped drinking, she at first lost weight, but she soon replaced alcohol with a craving for sugar. The weight crept back on, most of it around her belly (a risk factor, I’ll learn much later, for Alzheimer’s disease) and her thighs.

Over the last ten years at the cottage, even though her diet remained high in sugar, Mom lost all of the extra padding of middle-age and became slim again. I will learn later that weight loss can be one of the first warning signs of Alzheimer’s disease. Studies show that such a drop in weight often happens years before other symptoms appear, and results from the earliest effects of Alzheimer’s on the brain.

B
y age fifty-nine, Mom had to stop working, and started to receive Social Security disability payments. Her depression and anxiety worsened to the point that she could no longer maintain even the most basic of jobs. At her last job, at the bookstore, she was so anxious and nervous she kept making mistakes at the cash register. She started to retreat from her community activities and stayed home. She also started to act obsessive-compulsive, though
I didn’t know enough at the time to recognize her classic behavior. I simply knew that she could be fussy and uptight. Before she left the house she would spend a half hour picking each speck of lint off her clothes; she’d wash her hands frequently throughout the day; she’d spend days at her desk typing her monthly budgets on her IBM Selectric and then, with a ruler, underline expenses in red, income in green, and long-term expenditures to be saved up for, like roof repair or a new car, in black. Typos and slips of the pen merited a narrow strip of correction fluid, a half-hour’s wait to let it dry, then crisp reconstruction of the missing digits. One summer when I was in my twenties, she hired me to paint the cottage, and she kept track of my wages in columns on graph paper, again in multiple colored pens, down to .0916666 cents per minute.

In the last years she lived at the cottage she covered her desk with sticky-notes to remind herself of tasks and appointments—“Phone Martha,” “Feed Trinka,” “Doctor, Tuesday 4:00.” Although this habit may have been obsessive-compulsive, I know now that many people with early-stage dementia leave notes everywhere to help themselves remember things.

According to her medical records from Dr. Gavin, a psychiatrist had her try Nardil and Depakote for the depression and anxiety, but the drugs never seemed to help, or they gave her noxious side effects such as shaky hands. For the last few years, Effexor seemed to have smoothed her anxiety and lifted her depression.

During the time period when she tried these medications I lived hours away from her, and on the phone and in letters Mom would sketch only the briefest description of her struggles—to spare me, I think, from worry.

I wonder now if Mom was living then with the very early stages of Alzheimer’s disease—Stage 1, “normal functioning,” and Stage 2, “very mild cognitive decline,” as described by the Alzheimer’s Association, or Stage 1, “preclinical Alzheimer’s disease,” as
described by the international workgroup led by the Alzheimer’s Association and the National Institute on Aging. No one noticed, but the disease might have been starting.

I
n 1997, when Mom was sixty-five, both Dr. Gavin and her psychiatrist noticed some confusion and memory lapses. A CT scan of her brain showed mild damage, probably from tiny strokes. A neuropsychological exam at a medical school two hours away reported “minor word finding difficulties, somewhat slowed information processing, and diminished sustained attention.” According to their report, Mom had spoken to her doctor and psychiatrist about her concern that she’d withdrawn from all social activity, stopped cleaning the cottage, spent too much time on her paperwork, and felt overwhelmed by any decisions involving money. The report also mentions that Mom had a few incidents with her car that I didn’t know about, such as minor fender benders, and being stopped by the police for weaving. Her sleep was erratic, and she had trouble concentrating on tasks such as following recipes. She showed “mild depressive symptoms characterized by sadness, irritability, fatigue, ruminative thoughts, and decreased decision making.”

Because of her “excessive attention to detail and orderliness,” the evaluators found her to have obsessive-compulsive personality disorder. And in her “rapid, excessive speech” they saw evidence of “hypomania.” On the phone Mom would talk on and on about how I should invest in mutual funds, or, when I visited, what groceries we should buy for our meals, and often I could not help but insult her by looking away or huffing in impatience.

When the evaluators had called to ask me how I thought my mother was functioning, I told them I had noticed that she had difficulty remembering how to buckle her seat belt. And I was “concerned about her judgment,” according to the report, after an
incident the year before when my mother took the bus to New York City to visit Ben and me and one-year-old Andrew. She had offered to baby-sit while Ben and I went out for dinner, but then left Andrew alone, toddling around the apartment, to go outside and smoke. That day I was more than concerned, I was livid.

Their exam concluded that her primary problem was not a “neurodegenerative dementia such as Alzheimer’s disease,” but her obsessive-compulsivity and hypomania. At that time, they thought my mother could still live alone.

Looking back, I can see that, despite the exam’s conclusions, Mom had passed Stage 2 of the Alzheimer’s Association description of the disease—very mild cognitive decline—and was most likely in the beginning of Stage 3—mild cognitive decline. Though the symptoms were minor, she showed the tell-tale difficulties of finding words, performing tasks, planning, and organizing.

I
n the last five years my mother lived at the cottage, Ben and I and the kids stopped visiting the house itself because we knew the cottage was so cluttered there would be no room to sit down or eat a meal together. Mom would meet us half way at a restaurant, or she’d drive to our house. She also never let any friends indoors. Her best friends, Bill and Susan, owned a cottage two doors down from her, yet when they came over she’d chat with them outside on the chipped concrete steps.

On one rare evening when I visited the cottage, I found her sitting at her desk working on piles of paperwork. The bulb in her lamp had blown, and she hadn’t been able to figure out how to replace it. Perched on a ream of paper and folders on the corner of her desk was a slender, flickering candlestick.

I
t’s late April in 2005, and my mother may sound and act like an adult but is now, in essence, my third child. I would like her to function as an autonomous adult, but she can’t. She doesn’t want to be dependent on me, but she is.

We argue again one morning before I leave for work. When I returned to work after a being a stay-at-home mom, I hired a housecleaning crew to come in every two weeks. Today I ask Mom to get out of bed before the cleaners arrive at 9:00. I want them to be able to get into her room and her bathroom. She refuses to get up.

“I’m paying for the whole house to be cleaned,” I say. “If they can’t get into two of the rooms there isn’t much point in having them come.”

Mom glares at me. “You’re so bossy. So manipulative.”

“And you’re stubborn, Mom.” My voice rises and I say a few more things I regret before leaving to seethe in the car. I feel angry and depressed all day.

At the kitchen table, later in the evening, we talk. Mom felt bad all day, too.

“I feel guilty for being such a pain...when you’ve done so much for me,” she says. “I know I can be difficult.” She starts to cry. “I don’t want to go back to the cottage.”

I get up to hug her. “It’s okay. I want you to be happy here.”

“I’ve felt so scared. I’ve felt worse...the past couple of months.”

“I know, Mom.”

“I think I should stop smoking. I know I shouldn’t smoke in my room.” She adds, “I think the cigarettes are affecting my memory.”

Yes, I think to myself, they might be, but it’s too late now. I’m impressed, though, with her willingness to quit.

“How about we don’t buy any more after this?” I say.

“Okay, honey, let’s not.”

I
’m feeling more positive, but my little girl, Morgan, no longer likes Grammy living in her house. She tells me that Grammy tells her what to do, to clean up after herself, and not always in a nice way. The tension between my mother and my daughter seems to echo the stress between my mother and me when I was a child. As Mom’s anxious perfectionism and her drinking used to push us apart, Mom’s dementia will prevent her from learning from her mistakes with her granddaughter and from growing closer to her. She will forget what upsets Morgan and be unable to avoid the same patterns in the future.