Inside the Dementia Epidemic: A Daughter's Memoir (4 page)

“Yes, I think so, too.” My mother trusts her doctor. I know she trusts me, too, but Dr. Gavin’s opinion means just a bit more to her.

As I stride back down the hall with Mom at my side, I smile too much at the nurse and the assistants. I leave confident in my new role but puzzled by the doctor’s reserve and his sad eyes.

W
ith the benefit of hindsight, I can see that my mother’s behavior over the past fifteen years fit into the stages of Alzheimer’s disease. Alarms were sounding but I knew too little to take advantage of what medication exists to relieve the symptoms. Had I known the stages of Alzheimer’s, I might have been able to help my mother earlier, and in that way, helped myself as well. Knowing what I do now, I realize that, the day she slid her car into the snow ditch, my mother was already in Stage Four.

I outline the stages on the following pages, in order that you may be better informed than I was.

Dementia usually progresses so slowly that, as family members and friends, we can deny or rationalize for many years the changes we see in our loved ones. If they are over age eighty when diagnosed, they might live as little as three to four years, but if they are younger when diagnosed, they can live with the disease for up to twenty years. It’s also difficult to label a person’s behavior, as the stages often overlap from year to year, and may even seem to change from day to day or hour to hour.

The Alzheimer’s Association describes 7 Stages of Alzheimer’s Disease:

Stage 1: Normal functioning.
The person’s doctor, family and friends cannot detect a problem.

Stage 2: Very mild cognitive decline
, which may be normal aging or early dementia. The person may forget words or where to find objects. No symptoms can be detected by a doctor, family or friends.

Stage 3: Mild cognitive decline.
Sometimes Alzheimer’s can be diagnosed at this stage. A doctor, family or friends may notice problems with memory or concentration. The person may:

     Have noticeable problems coming up with the right word or name

     Have trouble remembering names when introduced to new people

     Have noticeably greater difficulty performing tasks in social or work settings

     Forget material they have just read

     Lose or misplace a valuable object

     Have increasing trouble with planning or organizing

Stage 4: Moderate cognitive decline. Mild or early-stage Alzheimer’s disease.
A cognitive assessment by a doctor should be able to detect this stage. The person may:

     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.

A
fter 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.”

M
onths 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.

N
ow, 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 complete acceptance. She even takes some initiative.

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

T
here 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.