Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

I’m taken by surprise, as only last week the staff thought Mom would be there a few more weeks. I will have three days to arrange Mom’s transfer back to Greenway. What follows is a logistical debacle—missed doctors’ signatures; delayed approvals from her old assisted living facility for her to move back; crises at my job; and Andrew’s tenth birthday party. If Mom stays at the rehab center past Friday, there will be a high price to pay—$200, funds that Mom will need for her future care. Friday morning I squeeze two hours out of my day to move Mom back to Greenway.

  I accept now that it’s my job to look out for my mother, but I resist the weight of these sudden transitions. There are so many last minute demands from Greenway, that when I finally do get Mom back in her old room, I go into her bathroom and start to bawl. After a few minutes I force myself to stop or I’d be there all day and I wipe my face on some toilet tissue and walk back down to the TV room where Mom waits with Julia, a friend who also lives on her floor. I sit down next to my mother on the couch and Julia leaves. There is no one else in the room. I start to cry again. “Are you all right?” Mom asks.

  “It’s just been a hard day,” I say. “I’m glad you’re back and doing so well, but it’s been hard.”

  I’m glad that she can listen. It feels good to cry next to her.

  After a moment she says, “Just take care of you.”

  With these words, with her squeeze of my hand, I feel like I have my mother back again, and it’s sweet. But I can’t take care of myself right now, I think. At least not today.

  As I leave I see Daphne, the case manager, who looks annoyed. I say, “I thought the only thing Mom needed to move back was the doctor’s signature, as long as I arranged help.”

  “Well,” Daphne says, following me to the door, “our staff hadn’t decided yet whether she should move back. I was still checking. I tried to help you. I tried to be flexible. But maybe,” she says, “I should just have said No.”

  “You don’t know how many hoops I had to jump through today to get her back here!” I’m about to cry again.

  “I know,” she says softly.

  “I give up!” I turn toward the parking lot, waving my arms at my side.

  Inside my car I bawl again, this time not only overwhelmed, but ashamed. Still sitting in the parking lot, I call Maggie. My words come out in gasps. I tell her “Greenway doesn’t seem too happy to have my mom back. I need to arrange help right away, at least first thing in the morning and at bedtime, maybe a check-in in the afternoon.”

  “No problem,” Maggie says. “I have thirty-five girls working for me. I can have someone there right away.”

  I didn’t realize she had a whole agency. Part of the reason I felt bad asking her for help at the last minute was because I thought she worked on her own.

  “I’ll come there myself, first thing in the morning, to see how your mom is doing. Don’t worry. Everything will be all right.”

  The writing is, however, on the wall: Two days after I bring Mom back to Greenway, I get a call from Maggie. She has “serious concerns.” Her aide found Mom at eight o’clock this morning “curled up in a ball” on her wet bed, her nightgown soaked up to the neck, no sheet or blanket over her. “Your mom’s going to get a urinary tract infection,” Maggie says. When she asked the RAs if they had Depends my mother could use they said they “didn’t deal with that” (even though Daphne told me they could order them). So Maggie asked if she could borrow a few and then she’d buy some herself.

  Last evening after dinner, she continues, no one could find Mom on the second floor. Maggie found her sitting alone in the auditorium on the first floor reading a magazine. “It’s not safe,” she tells me, “if no one has any idea where your mom is.” She also did not have her walker. I know that Greenway is used to Mom being on the first floor, usually in the library. They don’t panic unless she’s invited into another resident’s room and they can’t find her.

  Maggie tells me that all of this is “unfair to Judy.” I never thought of it that way but she’s right; Mom deserves better. Hesitating to offer her opinion unless asked, she does tell me that she prefers Maple Grove over Greenway because “all of the staff members are wonderful, caring and attentive. There is only one floor, and it’s circular, so she wouldn’t get lost. They’re used to incontinence—ninety-five percent of the residents wear Depends. And they would check on her every hour at night.” But Maggie doesn’t like to see people “locked in” as they are in Maple Grove’s dementia cottage, and suggests that I visit their other, unlocked, assisted living facility.

  I trust Maggie’s judgment about my mother’s care more than anyone else’s. She’s worked for years in every elder care facility in our small city, and she’s always been straight with me. Her aides seem reliable and kind. When Maggie offers to call the director at Maple Grove, a friend of hers, first thing in the morning to ask if they have a room available, I agree immediately. I haven’t wanted to move Mom again, to make her get used to a new environment, but I’m so angry at Greenway right now. The image of my mother curled on her bed, wet and cold, turns me irrevocably against them.

  It’s time to move on. Carefully, yes, but quickly.

  Part IV

  MEMORY CARE

  A Toss of the Dice

  The main assisted living building at Maple Grove has no room available, but their dementia cottage, called Elm Haven, has one room free. I had preferred the main assisted living building, but I am desperate, now, to move my mother.

  On Thursday I meet with Crystal, Elm Haven’s sales director, for a tour in the late afternoon. When I arrive I watch through the window in the locked front door as she punches a code into a pad on the wall to let me in. My immediate impression of the cottage is that it’s much more inviting than I’d imagined two years ago when I declined a tour, with its cozy living room, wall-to-wall rose carpeting, a gas fireplace with a fluffy white cat lounging on the hearth, and lots of natural light and plants. Six or seven women sit beside the fire, one reading a newspaper while the others listen to classical piano on a CD player. Everyone looks peaceful. Down a hall there’s a room with a pool table for visiting family members, a small library, and a room for the hairdresser. The dining room, a tenth the size of the cavernous dining room at Greenway, is split into three small spaces. Two RAs, women in their thirties and forties, zigzag through the tables setting up for dinner.

  Over the next few months I will learn that Elm Haven’s staffing and design are typical of “memory care” assisted living facilities for people who have dementia but do not yet need a nursing home. While Elm Haven has half the number of residents as Greenway’s conventional assisted living home, thirty compared to sixty, Elm Haven has five RAs on each shift compared to Greenway’s two. “Memory care” staff provide much more hands-on care and individual attention. Nurses are also available twenty-four hours a day, compared to just the day shift nurse at Greenway. All staff members receive training, similar to what we learned in our intentional community’s discussion of dementia, on how to interact with the residents to avoid triggering frustration or aggression.

  I ask Crystal if residents ever receive medication to make them more compliant. “We try to avoid that at all costs,” she says. “Usually we find that we can avoid any agitation in the first place with the right approach.”

  While activities at Greenway seem geared mainly toward the facility’s independent residents, Elm Haven residents enjoy a fulltime, bubbly and dedicated woman named Vicki who plans a daily roster of games, exercise classes, and other entertainment. Much of the activity, such as trivia quizzes and sing-a-longs, stimulates long-term memory.

  The building lies on one floor, and hallways flow in a circle so residents can walk for as long as they want without getting lost. Beyond the generous windows there are two outdoor patios in the middle of the circle; in good weather the doors to the patios are always unlocked, with residents free to roam through the gardens or sit in the shade of an umbrella. Garden beds raised waist-high allow the
residents to help the activities director plant tomatoes and basil. A screened-in porch holds wicker rocking chairs, and a canary and a parrot perched in cages.

  Crystal shows me the available room on the other side of the dining room in a hallway called “Neighborhood C.” It happens to be one of their largest single rooms, the most expensive. The room is very nice—freshly painted in ivory, with light blue-gray carpeting, a twin bed, side table, bureau, and a bathroom. The large windows look out over the parking lot, but in the distance I can see the lake. As we leave the room, Crystal points out a nook in the wall in the hallway next to the door, a cube-shaped space covered with Plexiglas called a “memory box,” another common feature in memory care, where family members can put photos and memorabilia; for residents who can’t read their names on the doors anymore, these displays serve as a way for them to recognize their rooms. Down the hall, there’s another small living room, this one with fewer windows and a bit dark, with a couch and wingback chairs, a TV, and another canary.

  I’m sure family members are supposed to find the design appealing, but I reserve judgment. I don’t want to be sucked into thinking it’s a wonderful place based on how it looks, when what will be most important is the quality of my mother’s care and her daily enjoyment of life.

  Crystal and I sit in one of the small dining rooms to talk. I’ve brought a list of all of Mom’s major issues and review them with her. What I’m watching for is Crystal’s skill at communicating—whether she’s vague or frank.

  “At what point, exactly,” I ask, “would my mother have to move out?”

  “Residents must be able to feed themselves, and be able to walk for at least a few steps, for example from the bed to a wheelchair.”

  That’s the kind of answer I’m looking for. No gray areas.

  She tells me that Elm Haven is applying for an “enriched” assisted living license from the state so residents would not have to leave when they could no longer do these two things. I assume these licenses take a while, so I don’t hold my breath that Mom would benefit. (I will find out, five years later, that the state has still not ruled on Elm Haven’s application—a tragedy for all of the residents who could have afforded to stay at Elm Haven but were forced into a nursing home in order to receive a little extra help.)

  Crystal tells me that an RA would bring Mom’s medication to her, in her room or wherever she is.

  Great! I think. No more waiting in line.

  When I mention Mom’s bed railing she tells me Elm Haven is not allowed to use one because they’re not a nursing home. I wonder why Greenway allowed it. (Maybe they didn’t, and that’s why it ended up in the closet.) She tells me they would push one edge of the bed against the wall, and tuck a long body pillow under the blanket along the other edge to create a bump to prevent her from rolling out. She says Elm Haven has a complex “fall management” system. In my eagerness to cover all my questions I forget to ask her to explain what she means.

  Can they put an alarm pad on Mom’s bed to alert the staff when she gets out of bed by herself? As they are not a nursing home, she says, they’re not allowed to use them. They could put a soft pad on the floor to cushion her if she falls, she says, but the downside is that it’s an unstable surface and might make it more likely that Mom would fall once she’s standing. I agree to forgo the floor pad.

  She tells me they can take Mom to her doctors’ appointments if needed, for an extra charge. I tell her I will usually do that as I can answer all of the doctors’ questions.

  A podiatrist comes in every sixty days, she continues. I find this inordinately exciting, as it means I’ll no longer have to take Mom out to get her toenails cut.

  I tell her I’m interested in the one available room, but ask that Mom be put on a waiting list for a small private room or a shared room (which are quite large), to save her about $700 a month. We calculate that her monthly bill, including extra services such as supervision with toileting, and extra cleaning because of the incontinence, will come to $4,172. In comparison, her room at Greenway, the smallest they had available, came to $2,400 a month, but did not include the extra help she has needed from private aides, which, at $18 an hour for a few hours a week, added another $2,000 a month.

  Crystal tells me that Elm Haven will also require a $4,000 onetime “community fee” to help pay for improvements to the common space such as new furniture and carpeting. I narrow my eyes and nod. That’s a lot of money, but I like the fact that everything looks new and spotless.

  In order to hold the room I will need to drop off all of her paperwork (social and medical history), plus a check for $8,172.10, first thing the next morning.

  Crystal tells me they will visit Mom at Greenway and do an assessment. If we decide to go ahead, Ben and I can move Mom the following Tuesday.

  I tell Crystal I’ll let her know my decision first thing in the morning. Even with Maggie’s recommendation, the onus is on me, no one else. I could get it right, or wrong.

  Friday morning I throw the dice, cash out more of Mom’s dwindling mutual funds, and deliver the check.

  Moving Day

  Ben has taken the day off from work to help me, and while I finished various errands, he’s already emptied Mom’s desk and drawers into boxes and packed up her clothes.

  When Mom wakes up from a nap in front of the TV, I stop and sit with her and explain our plan. One of Mom’s private aides sits beside her.

  “We’re going to have a bit of an adventure today,” I say. “We’re moving you to a really nice place where you’ll get more help.”

  “I need help?” she says.

  “Yes, you do, Mom.” I don’t know how to sugarcoat it. “You’re incontinent—and that’s okay—but you need help all the time now to make sure that you’re clean and dry.”

  “Oh.”

  “The new place is only three minutes away from us! It’s really, really nice, just like here, but we won’t—you won’t—have to pay extra for the help you need.”

  “I won’t have to pay...?” She seems startled at the thought that any of this is costing her money.

  “Yes, you won’t have to pay extra. The new place will be just as nice but less expensive.”

  Mom nods slightly, her eyes wide.

  A few residents stroll over to say good-bye. One woman has tears in her eyes and says, “Your mom is a great lady.”

  Another stops me as I escort my mother to the door. “I wanted to say good-bye, Judy.” She clasps Mom’s hand and Mom smiles at her.

  The woman twists toward me and says, “I hate it when people move out and nobody tells us. And the staff can never give us a forwarding address. We sit together at meals and get to know each other, then all of a sudden your friend is gone! It’s just not right.”

  “I know, I agree,” I whisper to her. “But I didn’t want to make it harder for my mother by walking around with her saying goodbye over and over. I’d have to keep explaining, and she might start to feel confused or anxious. You understand, right?”

  I feel defensive again. There are so many choices, so many needs of other people to consider. In this case, by making the move easier for Mom by not saying a dozen goodbyes, I’m making it easier for myself as well, placing my needs in front. I’m pacing myself for another long day.

  Settling In

  Oh, please let Elm Haven be the haven we need. I have been so stressed; I have been overeating—bits of Ben’s birthday cake, anything I could get my hands on. If I can’t get Mom safe and settled, I could end up weighing three hundred pounds.

  As I meet with the staff, my thought is as intense as a prayer: Let me like you.

  The head nurse at Elm Haven, Michelle, is a tanned, fit, and upbeat redhead in her forties who looks like an athlete. When we arrive, she trots out to the living room in her khakis and sneakers to greet us, and squats down in front of Mom’s chair. She looks deep into Mom’s eyes, and gives her the signature smile that we learn will always light up a room.

  “Welcome, J
udy!” she says. “I think you’re really going to like it here!”

  Though I’m still on hyper alert, ready to catch mistruths and false promises, her enthusiasm reassures me, at least at this moment, that all will be well.

  In her new room, Mom sits in a cushioned rocking chair by the window to rest and watch us work. Ben unloads the van while Candy and I unpack her things. I notice for the first time that there is no tub or shower in her bathroom, only the toilet and sink. I ask the maintenance man where the shower is and he points down the hall. Hmmm, I think, just like a dormitory. I feel sad for a moment that Mom won’t need the lovely cloth shower curtain I gave her to use at Greenway.

  Various staff members come in to chat with Mom. The housekeeper introduces herself, and Michelle comes back several times to check that Mom has everything she needs. As we unpack, an elderly man shuffles in Mom’s open door and stands staring at Mom. He’s pale but has chiseled features and a full head of salt-and-pepper hair. I say hello and tell him that Mom—“her name is Judy”—is new, she’s moving in today. Though his face lies slack, his eyes betray a hint of amusement and curiosity. He stares another moment, silent, then turns and shuffles out. I look over at Mom: She’s wide-eyed and squirming.

  “I guess people kind of wander around,” I say. “Maybe he wanted to say hello.”

  Mom shakes her head and purses her lips. “I don’t like that,” she says.

  Mom pushes herself up from the chair and walks to the bed, lies down on top of the quilt, pulls off one sneaker, and closes her eyes. I pull off the other sneaker, but when Mom is almost asleep, the director, Diane, knocks and comes in. She’s a tall, middle-aged woman with dark-rimmed glasses and short, blonde hair.

  “Is that you?” she asks my mom about a blown-up, framed photo we’ve hung on the wall over Mom’s bed of me at eighteen, the one where Mom hired a professional photographer. It was a cool day in March and I’m up in a tree, standing on the thick fork of its trunk, my arm draped on a branch; my hair is brown and short, layered in a Dorothy Hamill cut; my smile and the knowing look in my hazel eyes both impish and mature beyond my years.