Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Even if by luck or a preventive lifestyle we don’t succumb to dementia, each of us will pay for its treatment. In the United States in 2012, Medicare, Medicaid and out-of-pocket expenditures for Alzheimer’s and other dementia care total $200 billion. By 2050, the projected cost will reach $1.1 trillion. William Thies, Ph.D., the Alzheimer’s Association’s Chief Medical and Scientific Officer, says that “the overwhelming number of people whose lives will be altered by Alzheimer’s disease and dementia, combined with the staggering burden on families and nations, make Alzheimer’s the defining disease of this generation.”

  Remember those words as you read this book:

  “The defining disease of this generation.”

  The good news is that it is not too late to save yourself, and to learn how to best support your relatives if they already suffer.

  By sharing my journey of discovery, as well as the resources I acquired during the past seven years, I hope to help you cope with your afflicted family members and friends. What I’ve learned also might help you save your own sanity.

  Over the past few years I’ve inhaled all of the memoirs I could find about dementia caregiving, but most of these memoirs by adult children caring for a parent with dementia either treat the elder as hapless and amusing, which I find disrespectful, or they focus on the extreme stress and craziness of caregiving at home with little support. Few of these caregivers have written scenes in multiple care settings, as I have; few describe how they found adequate assistance; and few offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. They describe dementia itself as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. What I have experienced and felt with Mom is different, and I want to share our story.

  Related essays on dementia research, dementia risk factors, and planning for long-term care can be found in the appendices.

  I have navigated the maze of choices inherent in dementia care, and I can now offer my journey as a guide. With enough support from others, caregiving need not mean a life of constant exhaustion and loss. These years can be both manageable and meaningful—not a “long good-bye” as it’s often described, but a “long hello.”

  Part I

  HOME CARE

  Judy

  A minor car mishap signals the end of what had been my former relationship with my mother, and the beginning of my major involvement in her care.

  It is a February day in 2005, crisp after a fresh snow. I am following my mother’s car from her cottage on a lake to her doctor’s office in the small town nearby. I hadn’t planned to follow my mother for safety reasons, only as a routine need to have two cars for our separate plans later in the day.

  Although she’s driven through this town for twenty-five years, Mom loses her way and misses the block by the doctor’s office. When she finally pulls over to the side of the road, her car starts to slip into a ditch.

  This isn’t the first time I’ve seen my mother do this. When I was fourteen, my mother and I had been at the cottage alone one weekend, and she had been drinking as usual. As we headed back to our house two hours away, Mom turned twenty feet too early at the main road and drove the car five feet down into a ditch. She had to call a tow truck and explain to strangers how, on a clear, sunny evening, she ended up in the ditch.

  But on this snowy day, instead of reversing or summoning help, my mother continues to accelerate forward until she is wedged downward at so steep an angle that the front end of her Honda Accord is buried in the snow and the rear end of the car sticks up three feet in the air. I pull my mother from the driver’s seat and call another tow truck.

  This drama symbolized the facts: At seventy-two, my mother was beginning to fall into a great white opacity. It was up to me to save her. What would have happened to her if I had not followed her car? The image of my mother—trapped, pointed downward into nothingness—haunts me, still.

  Judy is not just a thin, white-haired woman whose sky-blue eyes are eerily bright. Judy is a complicated, unusual person in her own right. Thirty years ago, twice divorced, Mom sold our home as soon as I left for college and moved to our family’s vacation house—a two-story cottage on Silver Lake in rural New York. Then forty-nine years old, she cut her ties with ordinary life—her teaching job, commuting, and suburban settings. Without the usual obligations, my mother entered the world of her weekends and summer holidays. Judy set herself free, in a way many people wish to do, but few dare.

  Now, whenever I have to move my mother from one facility to the next, following the stages of her deterioration, I carry the framed photograph that, in my mind, shows the “real Judy”—Judy at her best.

  In this picture, you see a vital fifty-four-year-old woman, brunette, tanned brown, in a light-blue canoe, her dog beside her. This was the year of my mother’s great solo expedition around her beloved Silver Lake, thirty-three miles on each side. She carried a tent, sleeping bag, dried food, water, a Bunsen burner, a journal, and her miniature Schnauzer.

  Her plan was to interview the lake people, camp on the shores, and collect an oral history for a comprehensive chronicle of the mysterious, six-hundred-foot-deep lake famous for its “Guns of Silver,” the underwater booms that echo like explosions through the valleys and vineyards. The source of the thunder may be natural gas escaping from pockets in the bedrock beneath the lake. (That legend may now be a liability. Even as I write, there are news reports that my mother’s lake is threatened by the prospect of gas drilling along its shores that would destroy the ecological balance. As Judy is endangered, so is the place she loved.)

  The twenty-five years my mother spent living alone in that remote lake house represented the most successful, idiosyncratic stretch in her life. Mom called herself “Woodswoman,” inspired by Anne LaBastille’s book about living alone in the Adirondack Mountains. Mom took pride in chopping and stacking her own wood for the fireplace, and loved to be outside whenever she could, working in the yard. She enjoyed the quiet off-season when she had the expanse of lake nearly all to herself. She said, “a life lived indoors is no life at all.”

  Judy planned to live the rest of her life at the cottage. She loved the early morning sun rising wide and roseate over cliffs on the opposite shore, the waves changing direction without warning from north to south and south to north. Because of its depth, and its constant turning over from bottom to top, the lake freezes only once in a hundred years. From her desk facing the picture windows, Mom could see the winter waves fifty feet away crash fierce and white-tipped into the railroad-tie breakwall.

  It is one of the cruel ironies of dementia that this very beautiful, natural lifestyle, which gave her such pleasure, may have hastened my mother’s decline. As you will see in the appendices, new findings indicate that the brain must be stimulated; we must continually challenge our minds to learn new skills, and to participate in a variety of social and cultural events. Not only was Mom’s solitary life dangerous, but her deterioration was well advanced before anyone knew.

  Mom first showed signs of vascular dementia (also called “multi-infarct dementia”) from small strokes at age sixty-five. She is now, at age seventy-nine in 2012, in the last stage of “mixed dementia”—in her case, most likely a combination of Alzheimer’s disease and vascular dementia.

  I became my mother’s sole family caregiver at the age of forty, a job I never expected, and at first resisted. Because of our complex history together, I denied as long as I could that she needed help. My relationship with my mother had gone through its own stages and upheavals. Through the years I have been angry with her, estranged from her, and devoted to her.

  The day after she drove herself into that first ditch, my mother put herself into treatment for alcoholism. For the rest of her life, she stayed sober but continued to struggle with depression, anxiety, and obsessive-compulsive personality disorder. I left home at sixteen, and, for many years, had a long-distance relationship with her. Visits w
ere strained. (I remember the dramas—the night I fled, pregnant, with my stunned, young husband, when my mother ordered us to leave the cottage into a cold, black rain.) In different periods in our lives, we tried to overcome the tensions between us, aided by counseling and 12-step programs, but I kept my distance.

  Then, the slide into the snow ditch, and everything changed. I slid as well, blind and ignorant, into the dementia epidemic. I had no reason to know about the intricacies of the different settings for dementia care, let alone how to pay for them. As a matter of fact, I began writing this book because I felt guilty about each decision I had made on my mother’s behalf. I needed to figure out if my choices were sound or selfish. I knew no one else at age forty balancing the care of children and a parent, and feared that, with caregiving on top of work and family, I would lose myself. I also questioned the idea, so prevalent today, that to “age in place,” to receive care at home, is inherently better for elders than care in a facility.

  I would learn that, for many of us, becoming a caregiver for one’s parent is a midlife coming-of-age. I now emerge from the upheaval of this transition more confident, willing to ask for help, attuned to my own needs, and appreciative of the simple gifts of life.

  The Decision

  A month before my mother drove into the ditch across from her doctor’s office, she had called him in a panic. She couldn’t remember if she’d recorded a certain check. Dr. Gavin and I both knew how meticulous she was with her checkbook. This incident upset her so much that she called me, too, which was also unlike her.

  On the phone she told me that the previous night she had lost her bearing outside in the dark and almost stepped off a cliff. “And two weeks before that,” she’d said, “I fell on my way down the hill from the car. I wasn’t hurt, but I’m scared. What if I fall again, Martha? What if get confused again and walk off that cliff?” She confessed her concerns all at once, as if she could no longer hide them from me.

  It was clear my mother could no longer live alone at the cottage. It was simply too dangerous.

  What would be the alternative? Should I start commuting to care for her on a regular basis? I lived almost two hours away, round-trip. I worked. I had two young children. If Mom continued to live at the cottage, she would need someone to shop, cook all her meals for her, and clean. The cottage was five miles from the nearest town, which was too small to offer transportation services for the elderly, and few neighbors lived on the lake in the off-season to help drive her to appointments.

  I thought of the access road down the cliff to the cottages. It was blasted perhaps a hundred years ago, with the narrow passage hugging the cliff at a forty-five-degree angle, and a hairpin curve halfway down the steep descent. Once in a while, the only other year-round neighbor plowed the road with his four-wheel-drive; but even then, most cars couldn’t make it up and down the road without threatening to slip sideways off the cliff. My mother had to park her car on a precipice five hundred feet up the road, and clamber up and down with her packages.

  How had my mother managed this? Like a Nordic explorer, she wore ice cleats on her boots for traction and held a ski pole in her hand for balance. She baby-stepped up the hill to her car, then carried her groceries and library books back down in a red backpack. When she was younger, she pulled an improvised sled, a blue, plastic barrel cut in half with a rope attached.

  For her to continue to travel to and from her cottage would tempt a deadly accident. What could I do?

  I discarded the idea of commuting to drive her to and fro, or hiring aides to do so. Even at that starting point, I could see the potential problems with weather and no-show aides.

  Maybe she could move in with me, my husband Ben, and our children? I assumed that it would be easier for me, less stressful, if she lived in our home where I could include her in our meals, help plan her activities, and attend to her other needs without driving. I imagined that having my mother live with us would be the easiest way for me to help her.

  My family lives in an unusual, planned community, a development of more than thirty families on a large parcel of mostly open land. I imagined that, if my mother needed more company than I could give her, all I would need to do would be to walk across the gravel path that connects the houses and knock on a door, call someone, or send an email on the community’s listserv.

  I pictured Mom smiling and serene as she sits with a new friend at a concert at one of the three universities in town; joining us three nights a week for community meals; watching neighbors of all ages weave the cloth ribbons of our Maypole in the spring. I assumed that my role would be peripheral. Our community would give Mom the stimulation she needs to rejoin the pulse of life.

  Most important, though, I wanted to protect my mother—keep her from falling or starving. She looked skeletal, and I wanted to feed her. In my home, I could tuck her under my wing as I would my children; I could send her out into the world but watch her.

  I talked to Ben about her living with us. He has not had warm feelings for my mother since that night, early in our marriage, when she kicked us out of the cottage in a rage. Ben agreed to invite my mother into our home only because it was important to me.

  I called Mom to tell her that it was too dangerous for her to stay at the cottage any longer, that she could live with us. I was sure she would balk. To my surprise, she seemed relieved.

  She said, “You’re right, honey,” her voice small and far away. “I don’t think I can do this anymore.”

  When we finally do reach Dr. Gavin’s office that February morning, I report the incident of the snow ditch. Mom is quite fond of the elderly Dr. Gavin, her “small town doctor,” as she calls him, and has been going to him since she moved into the cottage.

  He reads aloud what he records in my mother’s chart: “Judy’s daughter is uncertain at this time whether or not her mother should be driving.”

  Turning to Mom, he says, “I believe you may have had a very small stroke, Judy.”

  “I have?” Mom looks startled.

  “Yes, I believe so. A very small stroke, too small to detect, but one that has affected your memory.” He pauses. “You and I have both noticed some small changes in your memory, haven’t we?”

  “Yes, I must say I’ve noticed,” Mom says. “It’s very upsetting.” She frowns but continues to study the doctor’s face.

  Dr. Gavin asks, “Judy, could you tell me what you had for breakfast this morning?”

  “I usually have ice water.”

  “And what did you have for lunch?”

  “Crackers, I guess. I haven’t been that hungry.”

  “Did you know that you’ve lost fifteen pounds this past year? You’re down to 118.”

  “No, I had no idea.”

  She smiles and flutters a laugh, but I feel something chill crack. Ice water. She’s doing even worse than I thought.

  I tell Dr. Gavin that I’ve invited my mother to live with me.

  The muscles in his face relax. Slowly, as if choosing each word carefully, he says, “I think it would be...good...for you, Judy, to be with your daughter.”

  “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.

  A New Beginning

  With 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 yo
u 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: