Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Problems at Home

  After four days, Mom and I are already getting on each other’s nerves. Mom barely eats. Ben and I make a delicious stew for dinner, but when I stand outside her door and ask her to come out, she says, “Go away.”

  Trinka is an immediate problem: Mom lets her in through the back door onto the carpet without wiping the dog’s wet paws. More serious: When the dog nips at my little girl and her friend, Mom says nothing. She sits in a daze.

  “Mom, you need to discipline the dog.”

  Mom grabs a newspaper, rolls it up and starts whacking the dog.

  “Mom, stop. When I said ‘discipline’, I didn’t mean beat the dog.”

  She lowers the paper.

  “Maybe we can lock Trinka in her crate when there are kids visiting,” I say.

  Mom shakes her head and scowls. “Trinka lost all her manners at that kennel.”

  “No, she acts this way because she’s been living alone with you at the cottage for ten years. She’s not used to being around other people, around children.”

  Mom is silent. Later, she goes into her room and refuses to come out for dinner. I knock, then open the door.

  “Is there a problem, Mom?”

  She’s lying on her bed reading and doesn’t look up.

  “You.”

  There’s a silver lining. When we snap at each other, I retreat to the hutch in the dining room where I store piles of laser paper printed on one side, and a stack of half-empty spiral notebooks. In the ten years since graduate school, I’ve written nothing, but since Mom moved in, I find myself scribbling on these scraps of paper. I hide notebooks in every room and carry one in my backpack to write on the bus on my way to work. They are my emotional safety valve.

  As our lives continue to interweave, my first rule is Danger Control.

  My first task: Take away Mom’s car keys.

  I’m worried that, while I’m not looking or I’m at work, Mom will walk out to her little green Honda and try to go shopping for cigarettes or chocolate, or maybe return to the cottage. I have to tell her that she should no longer drive, that I can take her wherever she wants to go. I dread this conversation. I fear her anger and indignation.

  I knock on her bedroom door and find her reading, lying on her bed. She’s mad at me again. Rather than come in, I stand in the doorway to tell her the bad news.

  Mom looks up from her book and her eyes shoot darts. “Who says I can’t drive? What makes you an authority on whether or not I should be driving?”

  “I’m not an authority,” I admit. “Dr. Gavin was very concerned about your driving.”

  She glares at me, unconvinced. I try another tactic. “As your only child, your only family member left, it’s my unpleasant job to tell you that you can no longer drive.” My words are formal and stiff. I want her to have sympathy for me as the person bearing bad news. I’ve read online that if you make it clear to a person with early-stage dementia that their behavior affects you, that it makes things more difficult for you and causes you stress, they are more likely to cooperate. I’m trying to be good at this.

  Mom sighs.

  “Plus, the traffic in town is awful,” I hasten to add.

  For the past ten years she’s hated driving in city traffic. I don’t tell Mom the real reason she shouldn’t drive: her inability to be aware of the drivers around her and to make quick decisions. People in the early stages of dementia negotiate the road only out of habit. I don’t need to spout facts, as it turns out.

  “You’re right,” she says. “I don’t want to drive in town.” She shakes her head and looks down at her book. “I’ll never find my way around.” With another sigh she picks up her keys from the bedside table and holds them out to me. I step in and take them.

  “Thank you,” I say, and wait a moment. There’s more to say, and I dread her response to the next step: “Will you let us cancel your insurance and take off the plates? Will you let us sell the car for you?” I doubt she’s ready to let go of the car itself, the symbol of her independence.

  Mom rolls over to face the wall. “That’s fine.”

  Her easy acquiescence both relieves and frightens me.

  • • •

  The following weeks unfold like a test, one that both Mom and I are failing. Mom seems depressed or angry, no longer perky as she was on her first day here. I wonder if she looked forward to moving in with us because she thought I would give her my undivided attention. Maybe she feels neglected, ignored, judged, put down? I don’t know, and for quite a while, I don’t ask. I’m so accustomed to thinking primarily of myself and my husband and children that I can barely feel this seismic shift in my mother’s world. It never occurs to me that her mood is perfectly normal for someone who has lost almost everything from her old life. I never ask a key question: How would I feel in her place?

  Five days a week, I work from 7:40 in the morning until 1:40 in the afternoon at a nearby university as an administrative assistant and editor. I return home at 2:30 after meeting Morgan and Andrew at their school bus stop. In the mornings, Ben gets the kids ready for school and drives them to the school bus at the end of our road.

  I worry about Mom sitting alone all day, and in the beginning I focus on making sure she gets enough to eat. For Mom’s breakfast, if she gets up before Ben leaves for work, he asks her what she would like; if she’s still asleep, which is usually the case, he leaves her some of whatever the kids had for breakfast and hopes that she will reheat it in the microwave. Before I leave for work, I find leftovers that Mom might like to eat for lunch, transfer them to a plate, cover them with plastic wrap and, before placing them in the front of the refrigerator, write “Mom” on a sticky note.

  By the end of our first month together I suspect that she’s not eating enough; she tells me she didn’t like the food, or that she got so caught up in her paperwork she “forgot to eat.” At first I blame this forgetting on her obsession with her bills, on her single-mindedness. I don’t see this as a glitch in her short-term memory. I blame her personality.

  I try ordering Meals on Wheels. Mom tastes one delivery—meatloaf with potato puffs and over-cooked spinach—and declares it awful. I ask her to try a few more of their meals—“Maybe we started on a bad day,” I say—but the next morning she manages to find their phone number and calls to cancel.

  In our tiny house built for energy efficiency, the kitchen, dining room, and living room flow together as one L-shaped room with little extra seating for another family member. Ben’s favorite place is a desk tucked into a tiny alcove under the stairs at the far end of the living room—his “lair” we call it—where he plays video games and surfs the Internet. My favorite place to sit and snack or do paperwork is the dining room, a few feet from the kitchen, in the one chair that directly faces the pond through our large picture windows.

  As soon as Mom moved in, she began to spend hours rooted in my chair, with her bills, a glass of ice water on a napkin, tissues, pens, a hairbrush, and the dog’s leash covering half the table. To my surprise, she converted this space into her new desk instead of using her bedroom desk with the view of the garden. When I’m home, I ask her to please not sit in my favorite chair, and she’s patient with me. She tries to remember to sit in the chair to the left, which still has a partial view of the pond, but she forgets. Wearing her nightgown, she reads and rereads her mail and munches on cashews or a stash of chocolate bars she keeps in the freezer. Though she’s willing to clear off her belongings for our family meals, after work and on weekends I miss this space for myself.

  • • •

  When she’s not at the dining room table, Mom wears her nightgown or only a T-shirt and underwear, and reads in bed, lying on top of the covers, half sitting, half lying down, her shoulders and upper body propped up on one elbow and leaning toward the lamp on the bedside table. She tells us she wants to help us out around the house, and tries a few times to set the table and wash the dishes, but to find everything she needs to do the job�
��or to remember how to do it—seems to exhaust her.

  Her only other action is to head out the back door with Trinka and sit on a flat rock on the low wall of the raised bed under the maple sapling, where she smokes and grinds a bare circle in the grass with the butt. With the hand that holds the leash, she scrunches the collar of her navy-blue jacket close to her neck. For an hour at a time, she’ll stare off toward the pond or the hills in the distance. Beneath her gray knit hat, her hair and face shine white in the cool spring sun. When I watch her through the window I’m startled by the whiteness of her hair, the paleness of her face, the curve of loneliness in the hunch of her back.

  I start to search for activities for Mom, not quite knowing where to begin. Our neighbor Rita, the only other member of our community with Alzheimer’s, goes to an adult day care program for people with dementia three days a week on the local van service for the elderly. I print out the schedule and show Mom the program’s activities. She takes one look and refuses to go, declaring it “kindergarten.” She’s right; coffee and discussion, walking for exercise, crafts, and listening to books read out loud do seem much too simple for her. Rita’s dementia is more advanced, and I’ve watched with pangs of pity and fear the decline of this vital, avid gardener into someone who needs constant supervision. Her children have hired aides, and other residents visit her regularly. There is a lesson in this—but I don’t learn it until later.

  I do send out an email seeking neighbors I can pay to visit Mom a few hours a week. Lydia, a psychologist who is currently a stay-at-home mom, offers to come by for three hours on Tuesdays and Thursdays. In the meantime, some of our retired neighbors graciously offer to take Mom into town with them for dinner and concerts. At first, she’s excited to join them, but then calls these kind neighbors at the last minute to cancel.

  It turns out my mother will not be making new friends and arranging to go out with them on her own. When I realize that she won’t, or can’t do this, it hits me for the first time just how poorly she’s functioning. While the frightful state of the cottage didn’t convince me of the seriousness of her decline, this does.

  As an introvert, I long for time alone to recharge and relax. All day, my job requires me to listen carefully to my boss, coworkers and clients. When I get home I’m accustomed to time by myself when the kids go out to play.

  Now I usually find Mom sitting at the table waiting for me with paperwork to go over, bills for me to explain. Sometimes she has written notes to remind herself to ask me something. I coach her through each step to write and record the checks and address the envelopes. One day, I help her fill out the paperwork for a new Medigap health insurance policy so she can see local doctors. I soon learn that if we spend more than an hour going over paperwork, or even just talking, we are both exhausted and snarky. As I listen to her talk on and on, as I explain the same thing again and again, my shoulders scrunch up, my breathing grows shallow; I want to jump out of my skin, the wooden chair feels so hard. After a few weeks of this, I learn to say at the end of the hour, even if we’re not done, “Mom, that’s all I can do for today.”

  Later, as I clean or cook, Mom asks me questions every few minutes. “What is this? Is this new? Has Trinka been out for a walk? Has she been fed? Do you have any ice cubes, my dear?”

  As soon as I can, I retreat behind a book.

  When I come home from work one day, my mother hands me another note that she wrote to remind herself to ask me a certain question. “Have you and Ben taken over my money?” she asks. “I haven’t gotten a bank statement in weeks. The only thing I can think of is that the two of you have cleared out my bank account.”

  A wave of heat scalds my cheeks. “We just had your mail forwarded, Mom,” I say. “You’ve only been living with us for three weeks!” I do not yet understand that dementia makes the confused person come up with strange, off-base explanations for what they don’t understand or can’t remember. My head is spinning, full of static, my chest feels heavy. How can my mother accuse me of stealing her money?

  I arrange for a volunteer from the “Check It” program at the senior center to meet with Mom at our house while I’m at work, to go over Mom’s bills and checkbook. When I try to help Mom balance her checkbook, she blames her confusion on my calculator. The woman from Check-It manages—I’d love to know how—to convince Mom that she can no longer keep track of her checkbook on her own. But when I ask Mom if the volunteer will come back, she smiles at me and says, “You can just do it.”

  “Are you sure?”

  “Yes, honey. I’ve tried and I just can’t make sense of it any more.” She leans back, gestures to the newest pile of paperwork on the table, and then slumps down onto the arms of the chair. “I’d appreciate your help.”

  As soon as a stranger—not me—showed her how she could no longer balance her checkbook, Mom could let go of this essential piece of her autonomy, and accept its loss.

  After that, we institute a new procedure: I open her bills, write and record her checks, and just have her sign them. I feel both relieved that I don’t have to explain each step to her, and nervous because I’m taking on more responsibility for making sure that her bills are paid.

  More problems surface: Ben, Morgan, and I all have asthma, and cannot tolerate cigarette smoke. Though we repeatedly ask Mom to please smoke outside, she sneaks cigarettes in her room. For fifty years, she’s smoked up to two packs a day. She’s tried many times in the past to quit, but without success. When she lived at the cottage, I convinced myself somehow that she wouldn’t fall asleep with a lit cigarette and set the place on fire. Years ago, on an overnight visit, before the garbage and recyclables piled up, I remember standing in her bedroom door while we said good-night, and watching her deliberately snuff out her cigarette in an ashtray before she switched off her lamp. Here in our house, I’m uncertain she’s as careful. One night at midnight, her puffing sets off the smoke alarm. She seems chagrined and stops for a few days, but then starts smoking again. I can’t tell if she’s forgetting our request or being stubborn. The smell infuriates me, and I have horrific visions of the house going up in flames.

  When my neighbor Lydia starts to come over for a few hours two days a week, my mother just wants to talk to her, saying she has no interest in food. I feel relieved to have Lydia there to reheat the meals and gently insist that Mom try some of the food. But I’m also happy that they go to the library together and out to lunch. They sit in the backyard on the rock wall and talk while Mom smokes. They go for short walks.

  Mom adores Lydia, calls her “an angel who fell from heaven.”

  Lydia tells me, “I love being with your mom. She’s such a sweetheart!”

  Though part of me wants Mom to feel pleased that people appear out of nowhere to enjoy her company, another part of me wants credit and appreciation for making it happen. I know it’s petty, but I tell Mom that I was the one who asked Lydia to come and visit. I remind her that we’re paying Lydia by the hour out of her checkbook. The thought of another woman my age, a kind of substitute daughter, enjoying all of Mom’s smiles and laughter twists a sour knot in my stomach.

  A neighbor of mine, whose mother in another state has Alzheimer’s disease, tells me how helpful she’s found our local Office for the Aging and its caregiver support group. If she hadn’t told me, I would never have guessed that there existed such groups as an Office for the Aging or caregiver support. In fact, I don’t yet think of myself as a caregiver, but only as a daughter. I’ll learn later that part of the reason why so many caregivers do not seek support is because they don’t see themselves as caregivers; they don’t recognize the label, or the fact that caregiving is a job, a new role in their lives for which they need information, support, and services.

  At work I’m fortunate to have flexible hours, which allow me, on the following Tuesday, to leave work early to attend my first support group meeting downtown. Seven of us meet around a large table in a cramped room in the basement of a county office building.
The facilitator, Dan, is a soft-spoken man in his forties whose mother had early-onset Alzheimer’s disease in her fifties. Most of the tired-looking people around the table are at least sixty, wives or husbands taking care of their spouses at home. Only two of us are adult children caring for our parents with dementia, and we are both women. I am the youngest in the group by about fifteen years.

  The people around the table take care of loved ones with Alzheimer’s disease, vascular dementia, Parkinson’s disease, and other causes of memory loss. When it is their turn to introduce themselves, some have to cry first. Many of the loved ones with dementia are in nursing homes or assisted living facilities; a minority lives alone in their own homes.

  We talk about elder care attorneys; I learn that I should find one soon in order to become Mom’s power of attorney and health care proxy, and help her complete a living will. We talk about how driving and the checkbook are the hardest things for people living with dementia to give up; I feel lucky that my mother did not put up a fight about driving and that she surrendered the checkbook.

  We talk about whether or not to ask our loved ones’ doctors for one of a handful of prescription medications that are supposed to relieve some of the symptoms of dementia temporarily (for up to three years). (See Appendix B.)

  The next time I see Mom’s doctor I ask her if Mom should take one of these medications, and she tells me that she’s not sure they work, and at this point, the damage has been done. I agree with her about the damage having been done, but I regret having missed the opportunity five or ten years ago to convince my mother to give a medication a try. It never occurs to me that Mom might still benefit from trying one or more of these medications, and I don’t know enough to research this further.