Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Knowing that within a few minutes Mom will probably forget what we’ve said, I type a seven-page letter with all the reasons why she can’t live at the cottage anymore, why it’s not working for us to share a house, why she needs to try a short stay at an assisted living place. The next day, after reading and re-reading the letter, Mom says, “It makes sense.” She’s calm. I can tell she wants what’s best for me and Ben and the kids. The letter helped her make her own decision and she’s willing to visit the assisted living places.

  I hope that, once she moves, she will forget that I said it was temporary.

  • • •

  I ask Lydia to go with Mom and me to tour one of the assisted living places. Another neighbor, Andy, who has always enjoyed Mom’s company, comes along for our visit to the other place. Mom will feel more comfortable about her decision if someone else whom she trusts tells her they like the assisted living places.

  One place, Greenway, is a non-profit in a well-maintained building overlooking the city. It includes both independent apartments and an assisted-living section with one-room studio apartments for people who cannot cook safely on their own and need help with meds and bathing. We find the staff friendly and inviting. Part of me, the part deep inside that still denies that my mother needs help, hopes that Mom will act normal enough during the interview to qualify for an independent apartment. But after talking with Mom for only a few minutes the director whispers to me, “Your mom will definitely need to be in assisted living.” I feel let down, almost embarrassed, as if my mother is deficient.

  Greenway brings in students from the nearby universities who volunteer with activities, classes, and cultural events. I’m a bit put off, though, by residents slumped sound asleep in chairs and wheelchairs along the main hallway in the assisted-living section, their heads sagging. Mom seems to be much more “with it” than these folks. I fear that if she moves here she will quickly decline.

  The other place, Maple Grove, is closer to us, and is also homey and well kept with warm staff, many activities, and a view of a small lake. But it’s private pay, without a sliding scale. If Mom were to move here and run out of savings, she would not have her rent reduced to fit her Social Security and teacher’s pension as she would at the non-profit, but would be asked to leave.

  When we arrive at Maple Grove, a young woman is playing the violin in the living room. I’m happy to see that the residents in the audience sit up straight with open eyes. Mom, Andy, and I look only at the main building at Maple Grove for people who need minimal assistance. Their smaller building next door is a locked “memory care” cottage for people with dementia. In my mind I picture the memory care cottage as a mini nursing home with brusque, overworked staff in white jackets, the residents alone in their rooms in the most advanced stages of dementia, bed-ridden or in wheelchairs, spoon-fed, unable to speak. I imagine stark white hallways, silent except for the occasional moan or piercing cry. When asked if we’d like a tour I just shake my head and mumble, “No thank you.”

  When we return to my house, Mom and I compare Green-way and Maple Grove. Their assisted living residences offer similar amenities: three meals a day in a main dining room, snacks, a library, a hairdresser, daily activities such as coffee and conversation, ceramics, concerts, and outings in a facility van. I prefer Maple Grove, even if it’s private pay, but I don’t tell my mother. I want this decision to be hers as much as my own, to respect what remains of her ability to choose her own life. As we talk, Mom forgets the details of each place, but remembers how she felt when she met the staff. She has always been sensitive to whether or not she feels an emotional connection with people. When she says that she likes the staff at Greenway better, that decides it for her, and for me. Greenway has only one room available, a tiny room overlooking the parking lot, but I know that it won’t be empty for long. I fill out the financial summary, the social history, and the medical forms. I write two checks for Mom to sign: one for the first month, $2,400, and one for the same amount for the deposit.

  At 7:00 a.m. the next day, before anyone else can ask for this room, I drive to Greenway and slip the completed application under the case manager’s door. As I straighten, a wave of relief surges through my body. This place is what Mom needs. What I need. She can enjoy her own routine, her own space, and new friends, and I can hand over this daily responsibility of watching and helping her to a paid staff. I can return to a role I’m more comfortable with, behind the scenes—independent daughter visiting her mostly independent mother—a relationship I fully expect will be healthier for all of us and a great deal easier for me. Any guilt I feel about moving Mom into an “old age” home lies buried, at least for now, deep below this overwhelming feeling of relief.

  Part II

  ASSISTED LIVING

  Small Indignities

  When Mom moves into Greenway, she has more savings than most Americans, thanks to a lifetime of pinching pennies. Upon her retirement from teaching on medical disability at age forty-nine, she realized that she needed to take charge of her financial future. She took a class on the stock market, and formed an investing club with a few women friends. For the next decade and a half, until she reached early-stage dementia, Mom studied the mutual fund reports called prospectuses (I remember that word because she talked about them all the time), and tracked her income, expenses, and investments each month.

  According to Forbes.com, thirty-seven percent of Americans in 2005 have no retirement savings at all, and for those who do have savings, the median value is only $27,000. In June of 2005, Mom has $17,700 in her checking account, and a total of $121,500 in an IRA and mutual funds. Using her monthly income from Social Security of $882, and teacher’s pension of $607, she will have to deplete her checking account by an additional $911 a month to pay for Greenway, plus $300 to $500 a month for Medicare and supplemental health insurance premiums, prescription costs not covered by insurance, dentist visits, haircuts, and clothing. I try not to think about how soon I’ll have to dip into her IRA and mutual funds, or how many years her savings will last. Deep in my heart, I feel an acceleration—the meter is running.

  I visit Mom about once a week; if I wait longer than that she chides me in a gentle tone: “I thought you’d given up on me.”

  “No, of course not,” I say.

  I don’t hear in her words that she might feel lonely or even rejected. I just hear confusion. I remind her that I’m close by and will visit her often.

  I drive her to all of her doctor’s appointments, and her favorite thing to do afterwards is to go out for an early dinner or ice cream. Meals at Greenway disappoint her. Unlike the residents in the independent section of Greenway, as an assisted-living resident, Mom is not allowed to stand in line for the fresh vegetables and fruit in the salad bar; she must wait at her table for the same poor iceberg lettuce with tomato and cucumber or macaroni salad. I imagine this rule about the salad bar materialized because many assisted-living residents become confused and might take too long choosing which items they want, perhaps growing agitated, while the independent residents wait in line behind them. Nevertheless this rule is one of many small indignities. Another indignity is that staff members may open her door without knocking to tell her it’s time to eat. When I notice a wooden chair in the middle of her room Mom tells me a staff member came into her room at six o’clock one morning while she was sleeping to change a light bulb in the dome in the ceiling, bringing the chair with her to stand on; not only did the staff person not ask permission to enter the room, she never finished the job and left the chair where my mother could bump into it.

  At first, the staff assigns Mom to sit at a table in the large, main dining room with two other women and a man from assisted living. When I join Mom for a few meals, her tablemates pick at their plates with grave expressions in complete silence. Mom’s social; she likes to ask people questions and to laugh. I can’t bear seeing my mother trapped with such depressing company three times a day every day.

  I ask D
aphne, the case manager, if Mom can be moved to a different table. Advocating for my mother, even in this small way, feels risky to me. I don’t want to develop a reputation right away as a bothersome family member. I fear the staff will resent my nitpicking and treat my mother less kindly, but soon I’m glad I spoke up. Within a week, Mom finds herself in a smaller wing of the dining room in the happy company of three talkative women from her assisted-living floor.

  My mother seems to have forgotten that she ever smoked. Upon moving in she had to quit smoking cold turkey; their fire regulations require that residents walk twenty feet outside to smoke, and the staff does not have time to accompany the residents outside. This seems miraculous; she never seems to crave a cigarette, never even mentions her habit of fifty years.

  For these first few months Mom has continued to take her medication alone in her room, one of only two residents in the assisted-living section to do so, Daphne tells me. Now, though, Daphne gently suggests, first to my mother and then to me, that it might be a better idea if Greenway kept track of her medication. Daphne and I agree that really we have no way of knowing for sure whether my mother remembers to take her medicine on schedule. Apparently Daphne’s patient manner convinces Mom to cooperate, and Mom relinquishes control of this with the same grace she did her driving, bill paying, and cigarettes. Twice a day, she will wait in line outside the medication room for her pills to be handed to her in a paper cup with another small cup of water to swallow. I feel sad picturing my proud mother waiting in line like a schoolgirl, but I’m grateful that Greenway can monitor her medication more closely than I have.

  Before she moved in, the maintenance staff painted Mom’s room ivory; the room looked fresh, with soft, clean carpet in a light rose. To keep my guilt at bay, I made her room more homelike, by hanging white, scalloped-edged café curtains to block the view of the parking lot and main entrance. The low, short curtains give her privacy but also allow an unobstructed view of the sky. I decorated with new brass lamps with ivory shades, and other items.

  I left new wastebaskets in the bathroom and next to the desk, but found out later that the cleaning staff will not empty the trash unless someone—me, I guess—remembers to place the baskets outside Mom’s door in the hallway. Right then, with the waste-baskets, I sensed that Mom might need more help than Greenway could provide. But I pushed this thought aside, assuming the trash rule was just a quirk in an otherwise reasonable system. Certainly Greenway must have other residents with mild dementia who might forget such a weekly task.

  Mom and I enjoy each other’s company more now that we’re not living in the same house. Over lunch at a nearby restaurant, she is so excited that she just talks and ignores her food. As I listen to her, I notice for the first time in many years that even without makeup, my mother is still beautiful. This beauty was hidden by the gauntness of early dementia when she lived alone, then by her dark moods when she lived in my home. Today her smile is genuine—stunning—her laugh generous and usually directed at herself. Mom’s eyes, once a blue-green speckled with brown, have turned the sky-blue of bachelor buttons, growing lighter and lighter each year. Her nose is slim, her cheekbones high. Her shoulders are narrow and bird-like; I imagine her upper body a lattice of little bones, featherweight.

  Mom pulls from her lap a yellow folder bound in a thick rubber band, full of notes, she says, to remind herself of what she wants to tell me. I lean forward on my elbows, curious, but when she opens the folder I can see that the papers are ancient bills, torn-out pages of magazines, and junk mail. On top of the pile, she has clipped a few small pieces of notepaper. Her chicken fajita grows soggy while she reads her notes. Two college students, young women, she says, have talked to her recently. The first one interviewed her for an hour outside on a bench under a tree. They had an “easy rapport,” Mom tells me, and though she doesn’t remember what they talked about, she remembers how much she liked that young woman. The student will come back in four months to interview her again.

  A second young woman interviewed her in a more formal manner, with less chatting back and forth, but encouraged her to write down four “commitments” for her health. Mom tells me with enthusiasm that she has promised herself she’ll do the following:

  1) Wear her one contact lens every day.

  Great! I think. I worry that without the lens she will weave more when she walks, and fall. I realize now that Mom may have difficulty remembering the steps involved in putting in the lens. Today, though, she’s wearing it—terrific! Such a small thing makes me feel so relieved.

  2) Walk for exercise. The second student says she will return and walk with her.

  I think to myself that walking is great. I’d love to see Mom use the wood-chip trail through the woods next to Greenway, but I worry that even walking around inside Mom might weave and fall. Will the student make sure she doesn’t fall?

  3) Make a dentist appointment.

  4) Get a primary doctor.

  The last two commitments embarrass me. Will this student think that my poor mother is abandoned at Greenway without a dentist or a doctor? Of course she has both.

  “Your doctor is Dr. Claiborne, remember?”

  “Oh, yes, I liked her. She mothered me. I’ll take that!”

  Dr. Claiborne came recommended to us by the elder care psychologist as someone who would give Mom her full attention. The psychologist’s first choice was a geriatrician, but his practice was full. As in most cities, we have a shortage of doctors trained specifically to work with the elderly. Dr. Claiborne is not a geriatrician, but she listens patiently to Mom, looks her in the eye over her bifocals, touches her arm, and laughs with her.

  Another day Mom tells me she has a new “best friend,” another student from the college, a young woman from Egypt with whom she has shared bits of her life story as well as the name of her favorite shampoo. I feel a bit jealous of their conversations, as I did with Lydia. Mom tells me that the students who come over and lead activities, polish the residents’ nails, or just sit and talk are “one of the two good things about living in that place.” The other good thing is the friends she’s made. She can’t remember their names but she clearly enjoys their company. She calls one friend “the woman with the white hair.” She’s started to hang out with this friend and others at night to watch old movies on the big-screen TV in the main living room.

  I feel unsettled when she tells me that she’s reading less at night because “I have to watch these movies.” How long will it be, I wonder, before she spends all of her days, as so many of the other residents do, in front of the TV?

  After lunch, walking with me to the car, she turns to me with a smile and says, “Thank you for the repast, my dear. That’s the right word, isn’t it?” I agree that it is and we laugh. We both enjoy finding just the right word. I have been told that I speak as if I’m composing a short story in my head. I’m sure that comes from all the years of listening to my mother read to me as a child. When I speak or write I can hear my mother’s voice, her cadence.

  Often when we drive back to Greenway my mother says, “Oh, do I have to go back to that place?” Sometimes she calls it a hospital and the residents “patients.” Sometimes she talks about the “children,” and how poorly they’re doing in class. I correct her and tell her that she’s a resident, not a patient, that it’s an assisted living place, not a school, but perhaps I shouldn’t—she’s right, in a way: It is more of an institution than a home.

  A Fall

  One week there’s an art exhibit in the Greenway auditorium of photographs of women with breast cancer, some of them naked from the waist up. Mom strolls beside me, glancing at the photos with a mild expression as if she feels no personal connection. I stop myself from asking her if she remembers having cancer. If she doesn’t remember, I don’t want to know. That would be yet another sign that she’s losing big chunks of her long-term memory, that her dementia is more serious than I want to admit.

  A few days later, I take a day off from wor
k as one of my two annually allotted personal days to drive Mom two hours to her preferred breast clinic for her annual mammogram. Mom’s checkup is uneventful, but we have a bit of a mishap before the appointment. We arrive two hours before the appointment and decide to go out to an early lunch. Since our chosen restaurant won’t open for another half hour, we walk next door in the strip mall to a clothing store, where we pass the time flipping through racks of blouses and pants. I don’t yet realize that I need to walk next to Mom every second. We separate for a few moments, browsing in different aisles.

  I lose sight of her, then hear her groan. I turn a corner in the middle of the store and see that she’s fallen down a short flight of stairs. She lies crumpled on her side, her arms and legs flat and limp against the floor. One young clerk rushes over to help. Mom laughs it off and lets us pull her upright. She seems to be fine, no bruises, no cuts, no broken bones.

  A few hours later, her left foot starts to hurt. When we get back to town she can no longer walk. I take her to the convenient care center where an X-ray shows she has a tiny fracture in her foot. As with her rib fracture when she fell out of bed in April, we are told that this fracture will also heal on its own. She will need to wear bandages and a boot brace for support, but won’t need crutches or a wheelchair. The resident assistants (RAs) at Greenway will change her bandages, and Mom will be able to put weight on her foot and walk.

  After Mom’s fall down the stairs, I worry more about her weaving as she walks. When I take her out, I cajole her into holding onto me. I remind her that she fell and broke her foot.

  “No, I didn’t,” she laughs.