Inside the Dementia Epidemic: A Daughter's Memoir Read online

  Dan also recommends the book The 36-Hour Day by Nancy Mace and Peter Rabins, a classic guidebook for dementia caregivers.

  Someone else gives me the name of a good local psychologist specializing in elder care issues. We talk about how the county’s Family and Children’s Services offers free caregivers’ counseling in people’s homes, and I make a note to call them.

  The other women in the group ask me questions I cannot answer: “How are you doing? What losses are you feeling? What are you giving up to have your mom live with you?”

  I have no idea what I’ve given up. I simply haven’t thought about it. Yet. I know that I’ve been feeling overwhelmed, but at this moment I feel vaguely smug; unlike the other daughters in the room, I take care of my mother under my own roof.

  One woman says pointedly in my direction that if her mother-in-law, who has dementia, were “held captive” at their home instead of staying at her assisted living place, she would go crazy. “She needs social contact and daily walks outside, and is happy there,” the woman says. I’m not holding my mother captive, I think to myself; I’m just trying to make sure she has everything she needs. Inside I sneer a bit at the idea of assisted living; I assume that this woman is just rationalizing her family’s decision to put her mother in what I assume is a cold, impersonal facility.

  The women remind me that caregivers need to take care of themselves. Yoga is good, they say, so is tai chi. One woman says she developed heart problems when she was caring for her husband at home. Another gets the flu when stressed by caregiving. A daughter tells me, “We all think we are super-women and can do everything, but we can’t.” A seventy-year-old woman, who placed her husband in a nursing home because she was no longer able to care for him in their home, tells us, “Human beings are finite. You can only do so much.”

  I listen, but their words don’t sink in right away. My life motto has always been, “Pile it on me.” Nothing has felt too difficult if I pushed myself hard enough. I don’t realize my limitations are fast approaching. Soon, I will have to make a choice.

  Instinct

  More problems surface every day. My mother has one contact lens, an old-fashioned hard lens that she’s supposed to wear in her right eye. She’s never worn glasses, only contacts. The hard lens is easy to clean—it requires only a rinse in saline solution, no disinfection—but soon I find the dirtied, shriveled lens in its dried-out case. Mom is literally turning a blind eye, and, metaphorically, so am I.

  Mom and I drive to the cottage to get more of her belongings. I’ve convinced her today to wear her contact lens, but when we approach Silver Lake she says, “Is this my lake? It doesn’t look like my lake.”

  Startled, I grip the steering wheel tighter, and fear this is the rapid deterioration I have just learned can happen: Is her long-term memory vanishing along with her short-term? Is this proof that she does have Alzheimer’s disease and not just mild dementia from tiny strokes? Will her dementia progress like Alzheimer’s disease? Will she soon be unable to dress, use the toilet by herself, walk, and feed herself? Will she end up curled in bed unable to swallow or move, eventually unable to breathe?

  So far, her new primary care doctor has avoided the word “Alzheimer’s.” She told me, “It’s the dementia that concerns us, not the diagnosis.” At this time I don’t know enough about how Alzheimer’s disease is diagnosed, or the benefits of early diagnosis, to press the point. (See Appendices A and G to see what I learned years later.) The doctor did give Mom a brief neurological test, and Mom did not know the date, the month, or who was president, and could not draw the numbers and hands of a clock.

  As we drive home from the cottage, and dinnertime approaches, I suggest a restaurant supper. She insists instead that we stop at her old supermarket for a half-pound bar of chocolate. In the car she proceeds to eat almost the entire bar.

  “Won’t that spoil your appetite?” I say.

  Mom says, “That sounds like a judgment!”

  This exchange escalates until I’m raising my voice and she’s calling me a controlling bitch. When we get home, I head straight upstairs to my bedroom to cry. A half hour later Mom climbs up the stairs, sits on the edge of my bed, and offers a hug. I’m surprised that she remembers our argument; I thought her short-term memory loss would erase it.

  “I’m sorry for acting that way,” she says.

  “I’m sorry, too. I’m sorry if I sounded condescending.” I realize that my talking to her as if I’m her mother is not the best thing for either of us. I can’t just take her under my wing as if she’s one of my children. It won’t be that simple.

  “It’s all right,” she says. “I love you so much, and I want you to know how much I appreciate everything you’re doing for me. You and Ben.”

  “I know, Mom. Thanks. I appreciate that.”

  When my mother apologizes like this for her half of our arguments, when she reaches to embrace me as I am, that’s when I feel closest to her, when I love her the most. For much of our lives, she’d blame our arguments on me. Only when I was in my thirties did Mom begin to try to understand my feelings and her contribution to our rifts. Maybe it was her new anxiety medication, maybe it was the progression of dementia, but slowly she mellowed. If she hung up on me, she’d call back and apologize, or cry in relief when I called back. If I told her I was angry, she would listen to my reasons without argument.

  When she offers this comfort, my mother is coherent and clear-eyed and beautiful. She’s the mother who, despite our battles, has always shared her wisdom, encouraged me and loved me in her own way. I no longer feel mad at her. In this moment, I want to help her, give her things, create experiences she will enjoy.

  I learn that I cannot spend more than two or three hours at a time doing errands with Mom—not because she’s always unpleasant, she’s not—but because everything we do is in such slow motion. She denies that she has much memory loss or confusion and wants to take the lead. Sometimes she welcomes my help; sometimes she bats me away. Concentrating like this for several hours leaves the synapses in my own brain singed like strands of hair in a flame.

  It doesn’t help that when we go out around strangers, Mom is charming and friendly. It’s only when we are alone that she’s negative and low-level sarcastic. The world receives her best behavior; I get her fatigue and frustration.

  In late April, eight weeks after she moved in, Mom calls me at work at 9:30 in the morning to tell me that she’s in pain. She says she got up earlier in the morning to use the bathroom and saw that her forehead was bleeding. Since she didn’t want to wake me, she went back to bed. When she got up later in the morning, after Ben and I had left for work and Andrew and Morgan were in school, her head and the side of her chest hurt.

  I rush home to take her to the hospital. She can’t remember how she hurt herself. I assume she rolled out of bed in the middle of the night and bumped her head on the nightstand on her way down to the bare wooden floor.

  In the E.R. Mom needs an X-ray of her ribs and a CT scan of her head. She enjoys all the attention and wants to laugh at herself, but laughing gives her sharp pain in her ribs.

  “Don’t laugh, Mom, lie still.” I smile at her from my chair at the side of the hospital bed where I sit clasping my hands in my lap. I see myself as her sidekick; I’m only with her to keep her company while she talks directly to the staff herself. The doctors will decide what to do and Mom will either agree or disagree with them. I have no opinion and feel no urgency to ask a lot of questions.

  A young female doctor swings in to tell us Mom might have a tiny rib fracture; there is nothing to be done, it will heal on its own. After Mom’s blood work, I wander the hallways to find melted ham and cheese sandwiches for lunch. We eat, laughing that all the doctors and nurses seem to be blond (“Why is that?”), and her side feels better. We are both giddy with relief.

  In the evening, Ben and I rush-order a bed rail online, a white, metal bar narrow enough to allow her to easily get in and out of bed, but far e
nough up the side of the bed to keep her upper body from rolling out. Each day before the bed rail arrives, I worry that I’ll find Mom unconscious on the floor.

  Going to the office is a vacation compared to being at home. When our neighbors comment on our having to take care of Mom’s dog, too, I reply with a laugh that taking in a dog is nothing compared to taking in your mother.

  As I rush about, I tell Ben, “The first ten years were all about the children; the next ten years will be all about Mom. I’ll catch up with you when we’re fifty!”

  At noon on a Saturday, Mom’s still sleeping in and I start to worry. She had coffee at five o’clock in the afternoon yesterday and, according to Ben, who stays up late every night, she couldn’t get to sleep. I’m frustrated because I don’t know what Mom can decide and control and what she can’t. Doesn’t she know that if she has coffee late in the afternoon it will keep her up all night? Can’t she remember this from one day to the next?

  When she lived at the cottage, she’d tell me over the phone that her pattern was to go out and do errands one day, be unable to go to sleep that night, then sleep in most of the next day. Often I’d call her around noon or in the early afternoon only to wake her, and she’d have no idea what time it was. I don’t want her to get back into that night-owl habit at our house because it would be impossible to schedule any activities for her, and it would upset everyone’s rhythms. If Mom sleeps most of the day, she will miss our meals and we’ll have to fix meals just for her; if we hire more caregivers for her during the day they may be unhappy to find her still in bed. Lydia is perky and full of energy, and because Mom likes her, Lydia’s able to get her up without a problem. Other care-givers might not have that luck; they might discover that when Mom has slept either too much or too little, she can be snappish.

  I can see that it is hard, exhausting work for Mom to live with her memory loss. I should be more patient. What is my role here? To house her with all her quirks and let her keep her own hours, no matter how difficult it becomes to live with her?

  After only two months with Mom, I start to imagine what her life might be like at an assisted living facility. She’d be expected to keep to a schedule, with a time to get up, take a shower, have breakfast, and take her medication. I bet they’d be even less flexible than I am.

  Meanwhile, our home care situation worsens. Every day, Mom retreats to her room at the slightest perception of insult. Sometimes she appreciates my help remembering things, but other times she gets angry and tells me to mind my own business. She tells me she feels like “a piece of shit in the corner.”

  One day, in hindsight, I’ll realize that during these months Mom lives with us, she is firmly in Stage Four of Alzheimer’s disease—moderate cognitive decline. She can no longer handle many complex tasks, and she’s increasingly moody and withdrawn.

  Mom and I sit in the office of a psychologist who specializes in elder care issues, the woman recommended to me by my caregiver support group. At first, Mom resists; she doesn’t see why she might need the advice of a new doctor. When I tell her that I could use the advice, she agrees to go. She sits in silence, with her ankles crossed, one hand resting on the other in her lap, a good girl in school. Forgetting our fights, she tells the psychologist that she’s happy living with me.

  “It’s not always that happy,” I tell the psychologist. “I know this is an unusual situation, but I want help to make it work.”

  The psychologist, a tall and slim woman with the cool air of preternatural calm, says, “Most adult children do not take care of their parents in their own homes. But I admire your effort. I want to help.”

  I tell her that I’m afraid I’m acting “dysfunctional” because I’m putting up with old dynamics between my mother and myself by having her live with me.

  “I don’t like the word ‘dysfunctional,’ ” she replies. “I’ve seen it over and over again that adult children have an almost instinctual need to take care of their elderly, frail parents.” She smiles. “When we see that our parents really need our help to survive, something almost parental kicks in. I do believe it is built in, biological, instinctual.”

  I feel so grateful to the psychologist for saying this I could jump up and hug her. I needed to know that my impulse to protect my mother was normal, understandable, maybe even beyond my conscious control. I’m relieved to hear that sometimes other adult children act on the same instinct and turn their lives upside down. We certainly lug baggage, my mother and I, but by living together, we’ve tried something most adult children don’t even attempt. I feel proud, and I feel hopeful.

  And yet, back at home, as my mother sits at the dining room table and crinkles the newspaper open and closed, sipping her glass of ice water, I just want to get as far away from her as possible.

  Our History

  My 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.

  In 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 a
nd 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.

  By 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.