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Dr. Catherine at the Chesapeake

I met Dr. Catherine on my fi rst morning at the Chesapeake. Standing in the

lobby, establishing my bearings, I found myself in the middle of two lines of

traffi c, one group of women heading back to their rooms after breakfast,

another group lining up to place lunch orders for the day’s outing to a

nearby restaurant. Within moments I was enveloped by a long leash, soon to

be licked by a friendly white terrier. Bending down to pet the dog, I could

hear confl icting comments from residents, ranging from one woman’s exas-

peration about losing her balance to a “Good morning, Muffi n” from an obvi-

ous dog-lover. I looked up to greet Muffi n’s owner, but my eyes met only the

long leash. I made out its circuitous path, weaving through the legs of resi-

dents and walkers, ending in the hand of a petite, well-dressed woman talk-

ing to the receptionist. I soon learned that Dr. Catherine is a visible and inde-

pendent, poised, rarely demure resident.

Dr. Catherine looks quintessentially Chesapeake. She dresses im -peccably in periwinkle blue or azalea pink; the Chesapeake’s decor is coordinated in patterns of hunter green and burgundy. She redec- orated her suite several months after moving in, while the Chesapeake refurbishes at any hint of wear. Dr. Catherine purchased a new bed and vanity, and the Chesapeake ordered a pool table and baby grand. Though younger than most of her peers (in her early seventies), she mirrors assisted living residents in that she has been diagnosed with dementia, arrived as a result of a catastrophic event, and transitioned from her home into the Chesapeake through several medical facilities.

Over the three and a half years in which we got to know Dr. Cathe- rine, we found her to be a sociable resident who walked her dog often, was active at residents’ meetings, embraced the cause of smokers’ rights, formed friendships, advocated for residents, and championed the basic

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EBSCO : eBook Collection (EBSCOhost) - printed on 5/8/2018 10:34 PM via CAL STATE UNIV DOMINGUEZ HILLS AN: 303867 ; Eckert, J. Kevin.; Inside Assisted Living : The Search for Home Account: s7451066.main.ehost

D R . C AT H E R I N E AT T H E C H E S A P E A K E 99

assisted living values of independence and autonomy. In this chapter we follow Dr. Catherine through a dual transition, fi rst one into assisted liv- ing and eventually a second into the dementia care unit. We discuss issues of entry and acceptance of an assisted living community as home; delve into the dynamic social relationships among residents, families, and staff; explore the role oversight plays in lifestyle change; and provide insights into the residents’ perspectives on the values of assisted living and the administrators’ balance of risk and comfort for all stakeholders at the Chesapeake.

Introducing Dr. Catherine

Dr. Catherine led an active life as an educator. She rose from classroom teacher to area supervisor, consulted in Africa and Asia, and earned a graduate degree while raising two children. Following her retirement, Dr. Catherine did nothing. Her friends, all teachers, were younger and still busy in the classroom. After a car accident, she gave up driving, thus re - stricting her movements even more. Her daughter, Susan, noticed that she was becoming increasingly disoriented, having falls and strokelike symp- toms requiring hospitalization, and drinking after having been sober for 25 years. Her friends heard less and less frequently from her. Inadver- tently, Susan discovered that her mother had been unable to learn how to operate the telephone answering machine. Her friends interpreted the lack of contact as lack of interest, when, in fact, Dr. Catherine was cognitively unable to respond.

Need for Assisted Living

Susan began to look for residential placements with graduated levels of care soon after she realized that her mother was having problems, but Dr. Catherine did not feel she was ready to move out of her home. Susan placed her mother’s name on a list at one assisted living facility in the event that an apartment would be needed quickly. Dr. Catherine per- mitted this but would not visit the home nor meet with the elder care consultant Susan hired. Divorced and independent, Dr. Catherine on her own found a woman to help her. Susan did not approve of this person, as

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100 I N S I D E A S S I S T E D L I V I N G

she smoked and drank. An MRI after a fall showed that Dr. Catherine’s brain was “shrinking,” and the physician spoke to both of them about alcohol-related dementia. Although this had been mentioned three years earlier, this time it “sank in,” and Susan believed that her mother stopped drinking.

Several months later, Susan found her mother in crisis. She had had a “bad fall at her home. And you know, it was in between when people were coming to visit her. . . . We think she was on the fl oor for three days. . . . She has a very good friend. . . . They would call each other every day. He’d been calling and calling and couldn’t get her, so he fi nally called the police and they found her. They were able to break in and they found her on the fl oor.”

While in the hospital, doctors told Susan that her mother had severe Alzheimer’s disease, but Susan and then later the Chesapeake staff never agreed with this diagnosis. Susan commented that her mother “had been on the fl oor with no food or water for at least three days” and feels this was suffi cient cause for her mother’s unsteady mental state. Dr. Catherine spent two weeks in the hospital and several more in rehabilitation while Susan combed through lists of assisted living homes.

Susan had six criteria for selecting a residence for her mother: safety, comfort, a social network, meals, dispensing of medication, and a home that was well kept and handsomely decorated. She had already reserved one room when a friend suggested the Chesapeake. The distance to her own home was longer, but the travel time was comparable, and Dr. Cath- erine’s close graduate school friend lived only minutes away. The initial visit was positive, and Susan especially appreciated the grounds where her mother could safely walk Muffi n. The Chesapeake had one opening, and Susan followed her instinct to switch homes. Although for months Dr. Catherine did not feel she belonged in an assisted living home and fought with her son and daughter not to stay, she still thought the Chesapeake “a pretty place.”

Assisted Living as Home

Clare, the Chesapeake’s assistant executive director, has much experience counseling families and residents, holds a graduate degree in gerontology,

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D R . C AT H E R I N E AT T H E C H E S A P E A K E 101

interned in and reorganized other assisted living homes, and ran the de - mentia care unit at the Chesapeake before her promotion to director of the assisted living wing. She advises family members to consider residents’ feelings when they are moving in and to make their apartments as “homey” as possible.

Once acclimated to the Chesapeake, Dr. Catherine and her daughter together began to realistically defi ne the comforts of “home.” Dr. Cath- erine’s rooms were on the fi rst fl oor, an easy stroll to—or retreat from— everywhere: dining room, porch, elevator, television lounge, smoking area, and the outdoors with Muffi n. Initially, her two-room suite was confi gured with the bedroom facing the parking lot and the living room opening to the corridor. The disabled-accessible bathroom and a closet are recessed and situated between the rooms, and a wide hallway allows light from the windows to fi lter through the apartment.

In the redecoration, Susan and her mother decided to switch the lay- out, and the couch, newly bought to fi t the space, rested between windows to allow Dr. Catherine natural light for daytime reading. The double bed was exchanged for a small twin, placed along the wall in the inner room where the light is diminished and Dr. Catherine could comfortably nap in the afternoon. A large television sustained her penchant for national news, and a white portable television atop a bureau served for viewing during occasional insomnia. Dr. Catherine’s diploma, sketches, and photographs were hung, and the bureau drawers marked with colors and clothing items so she could easily fi nd what she needed. Dr. Catherine placed Muf- fi n’s bed, rug, and water bowl conveniently near the door, and she decided to retain her children’s infant cradle to hold magazines and photo albums. Both women were pleased with the result of their decorating; it was some- thing fun they did together.

Clare is realistic when it comes to understanding residents’ frames of mind when moving in. “It doesn’t happen very often that residents are coming in here like—‘Oh, this is going to be great—I can’t wait to move into the Chesapeake and leave my home of 50 years!’ Usually they are very resistant to the move.” Clare feels that eventually about 70 percent of residents call the Chesapeake “home.” Gina, a care aide in her fi fties and a favorite among the residents, empathizes with those under her care and tries to put herself “in their shoes.” She commented that it “must be

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102 I N S I D E A S S I S T E D L I V I N G

hard to leave your home of 40 or 50 years” and fi nds that residents often arrive angry and retreat for days into their rooms. Eventually, “they come around,” and she hears, “It’s really not so bad here!” as residents begin to participate in social activities.

Keeping Busy

The corporation that owns the Chesapeake prides itself on developing and offering distinctive activities believed to engage residents mentally and physically. Because Tammy, the Chesapeake’s activities director, is intense about her work, she is treasured by some residents while alienating others. Dr. Catherine found Tammy’s high-pitched voice and ageist and aggres- sive speech annoying because “She doesn’t stop to listen . . . you know, she’s always ‘Come on Catherine, let’s do this,’ ‘Come on Catherine, let’s go do that,’ and I say, ‘Listen, listen—I have some reading I want to do.’ She has always got something for you to go to. Well, I’m not a go-to per- son all the time. I can be by myself.”

Structured activities did not initiate Dr. Catherine into the Chesa- peake, but having a dog and being a smoker did. Muffi n needed to be exercised, and while the Chesapeake welcomes animals, it is the respon- sibility of the pet owners to maintain their care. Muffi n drew Dr. Cathe- rine outside for walks, and the friendly terrier attracted other dog lovers. Dr. Catherine told me that she “would not have come” to the Chesapeake without Muffi n.

Smokers meet in their segregated areas. Because cigarettes are not permitted in suites, Dr. Catherine requested cigarettes two or three at a time from the receptionist and smoked in the “smoking room,” its loca- tion requiring a walk through most of the downstairs, or outside in the front of the building, where benches and a receptacle for cigarette butts are placed. Dr. Catherine got to know Dr. Smith in the smoking lounge, and through their repeated interaction, they developed a friendship. Ac - cording to Dr. Smith, gender, age, class, and addiction formed the basis of their relationship. He astutely noticed that both he and a male dentist were always addressed as “doctor,” but Dr. Catherine was often called by her fi rst name. He spoke about her: “I think we have the same kinds of backgrounds. In the fi rst place we’re younger than—I mean the typical

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D R . C AT H E R I N E AT T H E C H E S A P E A K E 103

resident here is well into her eighties. I think there are half a dozen guys in the whole complex, the rest are widows . . . [and] well, we both smoke cigarettes, which I guess is a—probably not a very positive thing to have to admit to. But we enjoy each other’s company. Put it that way.”

Throughout the many months of our research period, Dr. Catherine welcomed

my visits. Most times she was happy to talk, open to discussion on whatever was

headlined on CNN. There were times she was sleepy, angry, sad, or uncomfort-

able with leg pain. During the fi rst year I was there, she was eager to implement a

program bringing together residents in assisted living and the dementia care

unit, and we brainstormed on how to put her plan into practice. Our visits were

more casual than formal. One afternoon, as we sat near the window, Muffi n on

my lap, Dr. Catherine shared about her relationship with Mr. Peters, a “romanti-

cally interested” man who lived on the second fl oor. Other times Dr. Catherine

and I met up outside or in one of the lounges. Dr. Catherine was not one to be

holed up in her room, but also not one to be engaged in some planned activity. I

learned to tolerate the smoking lounge as a good place to observe conversation

between residents and an occasional well-liked staff member, especially on cold

days when it was too uncomfortable for an employee to stand outside the

kitchen door and smoke.

There was a period of time at the Chesapeake when two researchers were

present, often on the same day. We put in days ranging from two to ten hours,

attending staff , director, resident council, and food committee meetings; partici-

pating in and directing activities both in assisted living and the dementia care

unit; learning who does and does not watch Oprah and Dr. Phil; chatting about

local happenings while sitting on the porch; escorting a resident shopping or to

lunch; and visiting with and interviewing residents and staff in suites and public

spaces.

At the Chesapeake, the direct care staff assist residents throughout their

shifts, and this includes most dining room duties, except for cooking and wash-

ing dishes. We “worked lunch” and occasionally helped at dinner, pouring coff ee

so the staff could take lunch orders, start the soup cart, and retrieve tardy or for-

getful residents. Eventually we graduated to serving all beverages, learning who

drinks what and how much and who groans at tepid coff ee and confesses to caf-

feine jitters. We brewed coff ee, served meals, set place settings, dished up ice

cream, bussed tables, and changed soiled tablecloths. After lunch, several of us

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104 I N S I D E A S S I S T E D L I V I N G

would sit around and talk about our kids, vacations, the residents, irritations, and

the work of assisted living. In this way, we learned about and thanked an over-

worked and underpaid staff .

Lunch also gave insights into resident and staff interactions and conversa-

tions in a formalized group setting to which everyone—all but the sickest of resi-

dents—had to go or be charged handsomely for room service. One afternoon

Mrs. Murtha, the most crotchety of residents, called me over to a seat in the café.

Could I please apply her eyebrow pencil, she entreated, as she wanted to cover a

bruise she received after her last fall. Try as I might, I couldn’t raise a color. Much

to my dismay, I noticed that I was applying a standard number 2 pencil! She

accepted my apology, scrounged around, and fi nally found her Maybelline at the

bottom of her walker bag. Pencil and lipstick fi nally applied, she stood up,

adjusted her overshirt, and stately walked into the lobby, ready to face all.

Getting to Know the Chesapeake

If Huntington Inn is the freighter model of assisted living (as described in Chapter 4), then the Chesapeake is the cruise ship. We were more than sympathetic to the care supervisor who lamented that neither she, nor, sadly, her mother, could ever afford to live there.

Geographical Place

The Chesapeake is situated between two heavily traveled suburban roads, a half block inward from a major four-lane thoroughfare lined with shop- ping centers, restaurants, offi ce buildings, and other sundry commercial establishments. Bordering the home on its west side are the public library and a large Christian church complex. The property is esthetically pleas- ing and the grounds are meticulously maintained, with seasonal plantings of tulips, begonias, or pansies and mature trees shading surrounding paths and parking spaces. A sidewalk encircles the complex, and paths dovetail into open spaces by the library and church and run adjacent to a fenced yard designed for the dementia residents. Lining the sidewalk are a swing, the occasional bench, and age-appropriate exercise stations installed by a partnership between the Chesapeake, a local church, and a hospital.

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D R . C AT H E R I N E AT T H E C H E S A P E A K E 105

The suburban community surrounding the Chesapeake is prosperous, white, and educated, much like Dr. Catherine. Residents and families frequently select the Chesapeake because of its reputation, appearance, location, and proximity to family members. Often either relatives or friends live in the area; for some the Chesapeake is the convenient central location to which residents’ children, residentially scattered, can travel. In general, residents or their families refl ect, or aspire to, the community’s social indicators.

Constructed in the 1990s, the Chesapeake is composed of two sepa- rate multistoried buildings, one designed for independent living and the other for assisted living, connected by a raised overpass. It is part of a large for-profi t chain oriented toward the new assisted living philosophy. The assisted living portion of the Chesapeake accommodates 100 residents, with 40 of these individuals housed in the dementia care unit. Vacancies fi ll quickly, and the building consistently operates at full capacity.

Social Space

The adjoining church owns the land on which the Chesapeake was built. Part of the rent paid by the corporation provides a resident subsidy pro- gram administered through a board composed of church members and a director from the Chesapeake. Residents who have “spent down” their funds request support, and successful applicants have part of their fees paid by the church. No Medicaid residents are accepted, and during our tenure, to save money, several residents moved to military institutions and less expensive homes, into independent living, and “back home” with family. However, the directors try hard to work with families to allow residents to age in place. Dr. Catherine had shrewdly invested her savings and was fi nancially comfortable, facing no risk of displacement.

Like most of its competitors, the Chesapeake is certifi ed for level 3 care, the highest level recognized by the state. Clare feels that the dining room experience is critical to residents’ acceptance of the assisted living facility as their home. The Chesapeake therefore does not accept newcom- ers with medical needs such as feeding tubes that would prevent the shared dining experience. She is also concerned with the effect that health issues— for example, a resident’s excessive weight or aggressive behavior—have

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106 I N S I D E A S S I S T E D L I V I N G

on the direct care staff. When a resident becomes diffi cult to handle and requires a two-person assist to get in and out of bed or a chair, that resi- dent is either asked to move or to provide additional, private-duty care.

Clare does not, however, quickly dismiss ornery residents. Mrs. Gold constantly complained and, when in her room, repeatedly rang for the staff to attend to some small chore (pick up a tissue, get her gum, or check her Depends). The staff protested to Clare, who took on the role of direct care provider several times, interacting with Mrs. Gold and responding to her calls. She later explained to the staff that the pettiness of Mrs. Gold’s requests was to be tolerated as not all residents are docile and pleasant inhabitants. The care staff do work to accommodate residents who return from the hospital and rehab, and they support in-home hospice. Care aides and directors go out of their way for residents for whom they hold special affection, encouraging them to eat by ordering their favorite foods and enlivening their physical appearance with jewelry and makeup. It was not uncommon to hear that a staff member visited a resident in the hos- pital, the nursing home, or a new assisted living residence.

Inside the Home

The well-kept state of the facility was noteworthy at the Chesapeake. The front entrance is meant to attract, and the brass-handled, wood-paneled doors swing outward, inviting visitors to enter. A private sitting area ex - tends along the inside of the building, fl anked on both sides by walls and windows, separating this quiet space—a sort of “inside porch”—from the reception area. Natural light and strategically placed fi xtures in conjunc- tion with rich colors such as wine, turquoise, and hunter green along with spotless rugs, unscathed wooden tables, framed and subtle prints, and recently reupholstered furniture evoke the air of a residential hotel. The directors often introduced some new amenity like an exterior wood-burn- ing stove, Bose speakers mounted outside above the drive-through over- hang, and a jukebox in the café.

The lobby was habitually busy, a hub of congregating residents; it even sometimes hinted at chaos, as nearly every resident and employee, and all visitors, passed through this space each day. The receptionist sat at her desk while she answered the telephone, fi elded residents’ questions, hooked a woman’s necklace around her arthritic neck, took orders for the

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D R . C AT H E R I N E AT T H E C H E S A P E A K E 107

weekly restaurant excursion, discussed weekend plans with the executive director, monitored the television remote control, and reminded forgetful residents about daily schedules. Some residents took to napping in the lobby despite the din, and when other residents and staff complained that snoring women were not in keeping with the Chesapeake’s image, all but one chair were removed by the maintenance staff.

Direct care staff members run up and down the grand staircase, just to the left of the reception desk, too busy to take the elevator amid walkers, wheelchairs, and pets. The entrance to the dementia care unit is through an alcove in the rear of the fi rst fl oor, directly in line with the front door. When a code is pressed into the security keypad, walls separate, facilitat- ing passage. Off the lobby to the right is a café where residents can grab a cookie or a piece of fruit, pour coffee, or get a bowl of cereal; and beyond is the dining room with fresh fl owers set on the tables. To the left of the lobby is a television lounge, separated from the reception desk by a wall dominated by a large fi sh tank, and a hall of suites. On the second fl oor, four corridors of suites extend from a large and sunny lounge, as do the activities room, small offi ces and workrooms, the Wellness Center, and the hair salon.

The resident suites include small single-bedroom and two-bedroom units; most are private, but residents have the option of sharing rooms and/or baths. While we were there, residents changed suites because a “nicer” place opened up, because they needed to save money, or because the death of a spouse prompted downsizing to protect future assets.

Throughout the Chesapeake, attractive sitting areas offer residents comfortable public spaces to congregate, extending their small apart- ments into common living rooms. Residents bring furniture and memen- tos from home. Dr. Smith brought a work table and tools to craft airplane models; Mrs. Ferraro connected a computer to keep up with friends, surf the Web, and download knitting patterns; and Mr. Peters set up as much acoustical equipment as he could fi t to play operas. Most residents have a television, a few with large screens. Residents buy groceries on the weekly food run to the supermarket, and some families deliver snacks and necessities. This enables people to eat in the privacy and comfort of their rooms, where several use coffee pots and microwave ovens. This allows them to indulge in food that the Chesapeake’s chef does not cook (though some residents say that they should be reimbursed for meals skipped).

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108 I N S I D E A S S I S T E D L I V I N G

Residents are, however, carefully monitored by the staff to make sure that no one is skipping too many dinners.

Spending Time

On most days, the Chesapeake is lively. Bingo, entertainment from school groups, manicures, exercise classes, Bible lessons, birthday parties, sing- alongs, apple pie socials—an innumerable array of activities are planned to help residents fi ll their days. Monthly paper calendars are printed and distributed, and some residents keep them close at hand in their purses or walker bags; there is also an electronic daily calendar near the elevator. Family members pass in and out picking up relatives for medical appoint- ments, shopping, and lunch. Several residents go off on their own beyond the grounds. Mrs. Krensky pushed her oxygen tank on her wheelchair when walking to the library; Dr. Smith drove his motorized scooter to the pharmacy; and volunteers chauffeured Mrs. Cooper to her church to count the Sunday collection and Ms. Dobson to a local elementary school to teach reading. Special events are planned throughout the year; the spring dance with nearby uniformed military personnel is a perennial hit, as are the Valentine dinner, the Mother’s Day Tea, and the annual Christ- mas extravaganza, with band, wine bar, and scrumptious fi nger foods.

Unless tired or unwell, many residents spend large segments of their day walking around the Chesapeake, talking to other residents and the staff. Clare realizes that some residents have never been gregarious and says she doesn’t expect them to change now that they have moved into assisted living. Mrs. Drake adopted a pattern of walking outside around the Chesapeake at least seven times a day to keep in shape. She was trying to combat the image visualized in one of her pet phrases, “golden age gone rusty.” There are a few whose desire to remain solitary between meals is respected.

Dr. Catherine felt it important to become involved in the Chesapeake. “I like being helpful to people, and there are a lot of people who really need some cheering up.” She bundled her own cigarettes in threes for a resident forced to collect and smoke butts off the pavement because the other woman’s daughter refused her permission to smoke, and she visited with a blind neighbor who she felt was ignored by her daughter. Almost from the beginning of her move Dr. Catherine contrived an activ-

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D R . C AT H E R I N E AT T H E C H E S A P E A K E 109

ity whereby residents in the assisted living wing would interact with peo- ple in the dementia care unit, keeping company or offering support. She described the lack of social interaction in that unit: “All my friends sit like stones, all in a row.” Regarding her proposed activity, “If we ever get this . . . thing off the ground, it will be wonderful.”

The Chesapeake, while vocally in favor of her project, had no re - sources to help with this activity. Dr. Catherine tried to get her neighbors and dining partners on board, but only two steadfastly committed. Dr. Catherine was surprised to fi nd that residents and their families feared dementia. One woman on her corridor expressed interest in participating in visits to the dementia unit until her daughter heard about it. Dr. Cath- erine related the story: “I had this one lady who was so gung ho about it . . . and her daughter said, ‘Oh, no—she can’t go near those people. No, no, no—she can’t go—we’re not going to allow her to go near those people.’ It’s as if they think it’s contagious. I felt terrible. . . . However, I said to them, ‘You know, of course that’s your decision and choice,’ and it’s not something we can force on anyone. . . . They must have had a very serious talk with her because . . . she said, ‘Oh, no, no—I can’t go in there. I can’t go in there.’ You can’t force it.”

No One Is Typical

While we were at the Chesapeake, we met residents spanning 60 years in age, in couples and as singles, all with varying backgrounds and reasons for moving there. Several residents had moved into the Chesapeake when it opened, a few came for respite, others tried assisted living and relocated to the independent apartments (several made the transition between in - dependent and assisted living more than once), several relocated, a few entered a nursing home or died, and a few quietly but quickly were chan- neled into the dementia care unit. The more time we spent at the Chesa- peake, the more we appreciated Clare’s philosophy that each resident is different, which helps to explain the fact that many of the Chesapeake’s rules and policies are malleable.

Staff members varied in ages and backgrounds as well, from young women right out of high school to Gina in her fi fties. Some were attending college and were working part time; others focused on full-time work and their families. Several held two jobs. Care aides stopped in on their days

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off to visit and help when they were in the neighborhood, brought in their children on school holidays, or ran an occasional errand for a resident. The Chesapeake promotes employment advancement from within, and during our tenure we observed a cook, care aides, a housekeeper, and a business assistant promoted to higher positions, and also an upward shift- ing of positions in marketing, human resources, reception, and care super- vision. We also observed as staff members quit and new people began working; however, here at the Chesapeake, employee turnover was not as much an ongoing concern as elsewhere in assisted living facilities.

A Cut Above

The Chesapeake prides itself on its reputation. As symbols of status, the managers wear business casual, and direct care staff members dress in slacks and Chesapeake-monogrammed shirts. Professional grounds crews maintain the landscaping. Directors sustain contact with local aging agen- cies and associations and are active in regional corporate meetings. The Chesapeake focuses on safety, with technological solutions to monitor potential problems: direct care staff carry beepers and cell phones, resi- dents wear wandering alert bracelets, and residents’ telephones signal for help if bumped off the cradle for too long. The staff check on residents every two hours during the night, but a resident can opt out by signing a consent form that is also signed by the resident’s family. The corporation mandates that all employees be English-speaking so that they can quickly respond in an emergency.

Appearance was a central and crucial factor in Dr. Catherine’s daugh- ter selecting the Chesapeake. In her interview, Susan told us: “Mom’s biggest fear in life has always been that she would end up in a nursing home, and so that was the other reason I think that the Chesapeake so appealed to me because it tries so hard to not look like that. And it’s not.”

Life at the Chesapeake

Even with all of the Chesapeake’s activities, residents’ lives revolve around meal times. Almost everyone is on time, many congregating beforehand

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in the nearby lobby, café, or TV lounge. Direct care staff encourage early line-up partly because their job is to cue the forgetful about the upcoming meals, and to walk and wheel those needing help to the dining room. When the staff are in place to take orders and serve, the rope is pulled back, allowing the fl ood of residents to fi nd their seats.

Residents are assigned seats to minimize disagreements. The shift supervisor places new residents with those she believes to have compatible personalities; if there is dissension or preference, the supervisor makes a change. Residents’ photographs posted on a board directly inside the kitchen area help staff members learn faces and names.

Some residents seem tolerant of dementia and physical disability and help each other. Mrs. Krensky was solicitous over her blind tablemate, helping to cut her food, while at another table three women kept Mrs. Martin afl oat and out of the dementia care unit by making sure she ate and directing her toward social activities. This is not to say that confl icts did not occur, but the most raucous individuals were placed at tables for two to avoid disturbances and allow the meals to fl ow smoothly.

Not only did residents come to meals regularly, but also food was a popular topic of conversation. In addition to a resident council, the Ches- apeake had a food committee, which held monthly meetings with the assistant director and the chef, offering suggestions and making com- plaints. Despite this system, the two most vocal members told us that “nothing ever gets done.” The chef did solicit recipes from the residents; although he claimed to have made them, no residents recognized them. The chef also attended resident council meetings, but to the annoyance of the most actively engaged residents, some who attend merely sit in silence, preferring to grumble quietly during meals rather than complain publicly at a gathering. Although Dr. Catherine referred to the topics at the council meetings as “mundane,” she still participated in “gripe sessions” over menu options, portion sizes, and speed of service.

Companionship

Attachments develop among residents and staff, friendships blossom, and occasionally couples form. Dr. Smith and Mr. Peters became Dr. Cathe- rine’s two closest companions; all three were opera afi cionados and well- traveled. They conversed in the smoking room and watched operatic

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videos in Mr. Peters’ suite, imbibing alcohol that Dr. Smith purchased and Mr. Peters’ family provided. When Dr. Catherine requested a change of seat in the dining room to be with them, she was criticized by Mrs. Mitch- ell for wanting “to sit with the Ph.D.s” and ridiculed by a staff member for wanting “to sit with the men.” Eventually they did share a table in the dining room along with Mrs. Cooper, an amiable woman who had lived one block from the Chesapeake for all of her working life.

Mr. Peters, a recent widower, sent Dr. Catherine fl owers, made sexual overtures, invited her to vacation on the beach, and hinted at marriage. Although fl attered by his advances, Dr. Catherine was alarmed by Mr. Peters’ verbally abusive manner, and she questioned the nature of his at - tention. Dr. Smith became the closer and more stable friend, sharing her interest in the dementia care unit. He and his wife had entered the Chesa- peake together, an arrangement forced on them by their son. Dr. Smith’s health was failing, and he had not noticed that his wife was showing signs of dementia. Soon after their move into the Chesapeake, his wife was transferred to the dementia care unit without consulting him and was then moved to a facility specializing in dementia care beyond that provided at the Chesapeake. He and Dr. Catherine voiced essentially the same history; both had been placed in assisted living by their children without their in - put. Dr. Smith was philosophical about the residents and assisted living:

Most of the people here . . . have a story, and the story has a same-

ness about it. They have been placed here by younger relatives who

are either unable or uninclined to give them the kind of care that they

need and they have been—Are you familiar with the term “ware-

housing?”—and they’ve turned over their powers of attorney to their

kids and had their homes sold. And they get frequent visits, some

more often than others, from their kids. But if you were to sit out

here on Sunday on a nice day, and just watch the number of people

who go out Sunday morning and come back about 3:00 o’clock in

the afternoon—you know, their kids have done their duty. They have

given service to what they regard as being necessary duties to their

parents, and they’re good for another week. [Dr. Smith chuckled.] I

think that this business of sticking superannuated people into a clois-

tered environment is relatively new. People used to look after their

elderly people. Every family had a maiden aunt, who looked after

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Father or Grandfather or somebody. But it’s a whole different climate

now.

The Independent Dependent

As described in Chapter 1, resident independence is a touted value of the new assisted living philosophy. Of the six assisted living residences we studied, the management at the Chesapeake is perhaps the most vocal about its commitment to this value. Yet “independence” is framed in ways that people outside assisted living might not recognize. For example, resi- dents’ abilities to make decisions are constrained by their own families and the assisted living staff and management.

The Chesapeake, like most assisted living settings, does not provide new residents with an orientation guidebook to help them learn the rules. Dr. Catherine early on felt the pressure of living in an institution. “I think everybody does feel that they’re kind of locked up. They’re watched for all kinds of things. After the fi rst meal I had here, I went out for a walk and I walked a long time, and they had two people out fi nding me. And I’m so used to walking and doing those things that I was kind of horrifi ed that I just couldn’t go out and walk.” She soon learned that she was not permitted to walk to the nearby shopping center or church. “We’re really not supposed to do that. . . . When they were out following me, I didn’t know I was doing anything wrong. I was just going for a big walk. I thought, oh, my gosh—what is this—they are running after me!” “Oh, I know,” she added, “they are all liable and there are all those issues that they have to live with too.” Dr. Smith, in a later interview, emphasized this idea. “Most of the residents here are fairly independent. They walk around this place, but they have a—I don’t know—they must have some kind of spy network or something that catches people who are trying to cross the road and stuff. They do come down on people who are trying to beat the system.” Other residents described similar experiences.

For Dr. Catherine, weekly fi eld trips to local restaurants, organized by the Chesapeake, became one of her few opportunities to exert com- mand over her life similar to the position of power she held in education. On one of these excursions she corralled the maintenance director to argue for installing an air fi lter in the smoking room, and regularly at

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lunch outings she ordered wine or cocktails, ostensibly prohibited to her at the Chesapeake because of her alcohol abuse.

Other residents, too, exercised freedom in personal ways. Mr. Peters boasted publicly of his trips to buy liquor and cigars; another confi ded that she sidestepped the supermarket and “ran into” the adjacent clothing store on a recent grocery run. A resident purchased liquid soap for wash- ing lingerie (detergent is defi ned as a chemical, needing signed consent to keep in a suite); and Dr. Smith, at fi rst skeptical when his son presented him with a motorized scooter (“What would I ever do with one?”), soon found himself “enchanted” with it: “It has opened up a whole new world for me just to be able to get out of this place. Four walls, you know, can be very oppressive.” Initially Dr. Smith imagined that residents might be jealous or resent his “special toy.” But, he reported, “It’s been just the opposite. I have been very nicely surprised.”

Dr. Catherine, too, was happy for her friend (“He gets to go out and do his man thing”), but the gradual loss of independence stalked her. She challenged the Chesapeake’s policy that the receptionist distribute only single cigarettes to residents. As noted earlier, residents are not permitted to keep cigarettes in their suites. Rather than handing over her carton, she sometimes kept it: “I’m supposed to, but I told them I’m a little bit too old for that. I don’t need to do that, thank you. They haven’t forced me to do it.” (In reality, staff members comb residents’ suites looking for contra- band.) Dr. Smith, in a separate interview, commented, “I had to beg from the receptionist two cigarettes at a time.” His son ordered a de livery of beer and cigarettes from a local establishment, but they were intercepted at the desk. The smoking policy is intended to provide smokers with op - tions while still protecting the safety of the larger group—one of the restrictions imposed by group living that some assisted living residents fi nd diffi cult to accept.

Dr. Catherine objected to other policies at the Chesapeake, one being that Tammy, the activities director, had to pay for purchases on the weekly supermarket run. This policy denies residents control over their money and the privacy of their purchases. Another policy restricts over-the-coun- ter medications in the suites. “I bought an extra thing of Tylenol at the grocery store, and Tammy said, ‘You have to put that in the nurse’s offi ce,’ and I said, ‘I don’t choose to do that.’” Sometimes the nurse would be sent to a resident’s room to ask for the over-the-counter drug. She didn’t always

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get it. (Several residents showed us where their caches of over-the-counter drugs were hidden.)

Six months into living at the Chesapeake Dr. Catherine stated, “You see, one of the things I resent about this place—or any place like it—is that it takes away one’s independence.”

Risk-Taking

Making policy is an ongoing task for the Chesapeake management, espe- cially policies that concern risk. Residents and/or families may be asked to sign negotiated risk agreements that permit the resident to do things that confl ict with facility policies. The risk agreement specifi es the man- agement’s concern and asks the resident and his or her family to accept responsibility for risks associated with the resident’s actions. For example, negotiated risk agreements were written for such behavior as “wander- ing” and refusing to use a monitoring bracelet, refusal of the every-two- hour nightly bed checks, walking to a nearby shopping center, drinking alcohol, and storing cleaning chemicals (i.e., hand laundry detergent) in rooms. As assistant executive director, Clare looks at each individual case and resident before making an agreement, and maintains that there are no hard-and-fast rules: each case is “negotiated.” Regarding walking off the grounds, she said: “You know . . . if I have a resident who is not con- fused and feeling O.K. with it—I let them go. I have a resident who just moved in—he lives . . . kind of right around the corner. That’s where his house is—and he and his wife just moved in and every, almost every day he walks over to his old house—and his daughter says that is fi ne with her. If it’s fi ne with her, it’s fi ne with me. And he did sign—the daughter did sign—a risk form on that.”

One son we interviewed was of two minds about allowing his mother to cross the street. On the one hand, she had lived one block from the Chesapeake for close to 50 years and knew the perils of the roadways. On the other hand, she had both depression and dementia and had recently lost her husband. The idea that she might attempt suicide plagued him. He chose not to sign, and his mother was not permitted to walk across the busy street.

Mr. Peters was the fi rst resident to bring a motorized scooter into the Chesapeake. Much to Clare’s chagrin, he took it everywhere, from the

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neighborhood liquor store to the four-lane commercial highway. One time he ran out of charge and sat along the road until he was spotted, by chance, by one of the Chesapeake’s marketing staff. Clare noted, “I had a meeting with his family about this and they signed a negotiated risk agreement, saying, ‘Our Dad is free to come and go as he pleases . . . We understand he takes his wheelchair—or his motorized vehicle out and that’s fi ne with us.’” When Dr. Smith received his motorized scooter sev- eral months later, a facility policy for its use outside the building was fi rmly in place.

To Barry, the executive director, the Chesapeake is a “managed risk community.” Risk taking is acceptable if residents are to retain any inde- pendence. He explains. “It’s a gray world. . . . A lot of things can hap- pen. . . . [Am I] willing to take those risks to give those residents the inde- pendence . . . for them to live out the rest of their life the way they want to?” He is. For Barry, it is the family’s and the resident’s right to choose the level of risk, as long as that level is within Chesapeake corporate policy. It is “their right of how they choose to live and what environment they want. . . . I mean, anything can happen, and that’s what we mean by managed risk. And we’re very honest with the families; anything can hap- pen here.” Barry went on to give examples, such as tripping over potted plants and knickknacks. “But at least you know we’re going to do every- thing we can to manage that risk.” As Clare commented, “There is only so much you can do.”

As Dr. Catherine’s health improved in the fi rst few weeks she lived at the Chesapeake, she questioned her move and the appropriateness of hav- ing to live there. She realized that her daughter wanted her safe after her fall. “But I keep telling her now—I’m fi ne now and there is no reason for me to be here. And that’s what everybody says in the place. They all say— why are you here?” At that time, her dementia was not readily noticeable to other residents; partly because of her intelligence and her sociability, she was able to compensate for her increasing confusion. But over time, that changed.

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The Second Transition

From the time Dr. Catherine moved in, the people closest to her knew that she would most likely be relocated eventually to the dementia care unit. Her daughter, Susan, had considered the probable transition when select- ing the Chesapeake. Clare, as assistant executive director, has suffi cient experience in the fi eld to predict the outcome, and Dr. Catherine herself related her encounter with a psychiatric social worker who told her that she would have severe dementia eventually. For Clare, this transitional process was exceptionally long and complex because Dr. Catherine is such a “unique case.” Her transition was “hard” because she was often “so lucid” and “sometimes she’s so good.”

Clare fi nds families challenging and diffi cult to convince when the staff at the Chesapeake decides it is time for their relatives’ move into the dementia care unit. Despite documented assessments and agreement on entry, Susan, too, questioned the timing when Clare suggested that the move was imminent. Residing in assisted living allows the family hope for stability; movement into the dementia care unit forces them to recognize and accept their relative’s decline. Once in dementia care, residents rarely leave.

As assisted living coordinator, Richard is quick to pick up on the frequency of denial by both families and residents. Reasons for transition- ing need to be documented and warranted by the staff “because you have to justify [the move] to the family, because the family doesn’t want to see Mom and Dad decline.” As for residents, “it’s so hard when you’re deal- ing with the human mind . . . they don’t want to see themselves decline. Some of them understand and get frustrated by the fact that they are de - clining. A lot of them sink into a depression because of that.”

Dr. Catherine’s second transition, the one into dementia care, slowly progressed over three years. She demonstrated confusion in lighting ciga- rettes, using eating utensils, and fi nding her place in the dining room. She needed direction to her suite, a short walk from the television lounge, and she lit a match next to an oxygen tank, to the horror of its owner, Mrs. Krensky. Susan hired dog walkers, and when their twice-daily visits proved inadequate, direct care aides walked Muffi n. Clare planned early on for both Muffi n’s and Dr. Catherine’s transition together into the dementia

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care unit, but the dog required too much of the staff’s time, and, to Dr. Catherine’s great sadness, Muffi n was adopted by her walkers. As time went on, Dr. Catherine disrobed in public, had frequent toileting acci- dents, demonstrated an inability to communicate with other residents, displayed problems with eating, and talked to what she believed was an - other person in the mirror. She was repeatedly evaluated by the staff, and reports were made regularly to Susan.

Dr. Catherine’s physical condition also gradually changed. She put on weight, her breathing was sometimes labored, and her walking slowed when she began to drag her feet. There was also a decline in her balance, ability to walk straight, and lower body strength. She rested frequently and intermittently while walking about the Chesapeake, and negotiating stairs became increasingly problematic.

Dr. Catherine had been a visible resident since her move-in, spending at least as much time outside her suite as in it. Over time, Mrs. Krensky, Mrs. Mitchell, and Mrs. Randall, all active residents at the Chesapeake, began to comment on her decline. Shouldn’t she be “back there,” Mrs. Krensky wondered, referring to the dementia care unit? When Dr. Cath- erine left for a visit to her daughter’s home, Mrs. Mitchell assumed she had moved into the dementia unit; she wondered what life was like “back there” but never initiated a visit to see it for herself. Other residents were more kind, helping her along in getting wherever she needed to go. Mr. Peters had long since left the Chesapeake for another assisted living fa - cility, and Dr. Smith, perhaps because of depression or embarrassment, or because Dr. Catherine’s decline resembled his wife’s, ignored her. Dr. Catherine had either forgotten or disregarded the service program that previously excited her and stopped visiting friends in the dementia care unit. When her neighbor moved there, Dr. Catherine explained the transi- tion as one in which Mrs. Wood “graciously” accommodated her daugh- ter’s wishes. Hearing this comment caused us to wonder if Dr. Catherine anticipated her own move.

The one problematic issue that Susan had with the Chesapeake was the staff’s inability to control her mother’s drinking, especially because her dementia was alcohol-related. The staff told Susan the drinking could be discouraged but not curtailed, as it occurred in other residents’ rooms. Richard, the assisted living coordinator, agreed to be the “enforcer” be - cause drinking caused a month-long rift with her mother whenever Susan

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brought up the topic. Susan also appreciated Richard’s offer to make a policy specifi cally addressing Dr. Catherine’s problems. (In an interview, Richard told us that his goal is to make families’ lives easier.)

Over the years we were in contact with the Chesapeake, Clare worked with Susan to prepare for her mother’s transition, and called their rela- tionship “close.” Susan fi nally agreed to the move if a suite opened in the dementia care unit that was identical to the one her mother lived in out- side its walls; this, she felt, would make for a seamless adjustment. When one became available, Clare felt the time was right, and Susan and her brother agreed. Dr. Catherine “loved” her new room and “was fi ne with moving.” After the fi rst week, she no longer expressed any interest to leave the unit.

I visited with Dr. Catherine after her move. She had lost weight and her breathing

was regular. I am sure she remembered me, not as the researcher who inter-

viewed her but as a friendly face somewhere from the past. She asked about my

family and told me stories about the people sitting around us, many of whom I

knew; I recalled Dr. Smith saying that everyone has a story. Later, as we walked

down a hallway toward her room—she was eager to show it off —I found her

slow and unsteady and wondered about her using a walker. I felt she could possi-

bly fall, as she clutched my arm tightly. I asked a care staff member how far down

the hall did Dr. Catherine live. “Dr. Catherine?” In surprise, she asked, “Dr. Who?” Dr.

Catherine’s title did not follow her into the dementia care unit, nor was she lead-

ing me in the right direction. Catherine lived on the other side of the wing.

Final Thoughts

Values

Independence is a core tenet in assisted living philosophy. The popular defi nition of independence as freedom of choice, however, cannot always be realized in assisted living. Residents who have cognitive impairments and physical disabilities must rely on others, including their families and the assisted living staff, for guidance and direct care. Dr. Catherine was clear in telling us that assisted living stripped her of that valued trait, with “independence” meaning little more than menu choice and degree of participation in social activities, yet she did bring her dog to the Chesa-

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peake and made decisions about what she did and with whom on a daily basis—as long as she did not leave the property unescorted and con- formed to the implied rules in the assisted living setting. Safety and inde- pendence are trade-offs viewed differently by residents, family members, and administrators.

In our interviews with families and staff, the topic of safety frequently surfaced. Certainly safety is important, but the degree of protection pro- moted by the family and/or staff can be at odds with the residents’ prefer- ences. Susan described safety as a prime concern in selecting the Chesa- peake. Even Dr. Catherine herself realized that problems of risk exist, yet her very sense of self was as a capable and independent woman. Accept- ing the limitations imposed by assisted living staff, management, and her daughter presented an ongoing adjustment for her.

Lifestyle Change

By its very nature, assisted living is an institutionalized residential setting, in some ways antithetical to the ways of life residents held before they entered. After living a private and sometimes solitary life before assisted living, residents at the Chesapeake interact on a regular basis in close quarters with more than one hundred other people. They must adapt to loss of privacy, for people enter their rooms unannounced, and the staff either open doors and knock (in that order) or use a key to gain entrance at will. Mrs. Podesta, a woman with whom we spoke often, lamented one afternoon that her reputation was “ruined.” Tammy, the activities direc- tor, had observed her drinking a glass of wine, assumed she was inebri- ated, related the incident to the entire second-fl oor staff, and sent a letter to her son. She eventually signed her own risk agreement to drink two ounces of alcohol per night to help her sleep. The accommodation to assisted living requires adjustment to a new physical space, a changing lifestyle, and an aging body, all at the same time.

At the Chesapeake, assisted living is a cross between a private home, a residential hotel, and a medical clinic. Meals are served in an elegant dining room, and residents collect for small talk in the lobby. However, as Mrs. Wood commented one morning, “If this is my home, why can’t I come to breakfast in my bathrobe?” Learning what signifi es home or hotel, another lifestyle change, is sometimes confusing and rarely rational.

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Another example of the public nature of private behavior involves Mrs. Drake. One afternoon when she ran into the café wearing a pink house- coat to retrieve a sweater she realized she had left behind, the care staff questioned her cognition based on her decision to appear in public in her nightgown!

Although not a nursing facility, an assisted living residence by neces- sity involves medical care. The emphasis on wellness belies its true nature, that of caring for residents’ health needs and dispensing of medications on a regular basis privately in rooms and publicly in lounges and the dining room. Relying on a medical technician to receive pills in view of other resi- dents and staff, a true lifestyle change, might further erode some residents’ sense of independence by making a private act a public occurrence.

Communication in assisted living is also compromised. Residents of the Chesapeake bemoan not being kept informed on the whereabouts and health status of their friends and neighbors. They complain that no one takes heed of what they say at council and committee meetings and feel these gatherings are a sham. Residents also deliberately hide signs of de - cline to maintain an identity as a fi t and functioning person and avoid paying higher fees for increased levels of care.

Resident Transitioning

We found the residential population at the Chesapeake to be diverse and somewhat transient. We interviewed residents ranging in age from 49 to 104. These people came from varying occupations, educational levels, and geographic backgrounds. Although in assisted living facilities many indi- viduals decline and go to the hospital or skilled nursing, we also noted that some residents remained stable. Several do remain for years in one long-term care setting. Others move back home (mostly with relatives), into independent living, to another assisted living or group home, or to another institution offering a different type of care, such as a dementia care facility. After three years, the youngest woman residing at the Chesa- peake, Ms. Dobson, a teacher who had been in a car accident, defi ed all odds and moved, with her service dog, into a townhome accessible to her motorized chair and near a supermarket.

Residents who leave do so mostly on their own volition; some, how- ever, are asked to leave because they have not paid their bills, have spent

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down their funds, have increased medical needs, exhibit aggression or in - tolerable behavior, or refuse movement into the dementia care unit. Some are asked to leave because they refuse to accept services. Clare said she has had many conversations with residents about their negative attitudes toward the staff and has tried to explain that “they are here to help you.” If the situation becomes uncontrollable, she has no problem discharging residents.

Families are encouraged to plan for the future. Dr. Catherine’s daugh- ter Susan, despite all her preparations for her mother’s care, found that fi nalizing decisions was diffi cult. Even after hiring an elder care consul- tant, visiting assisted living homes, and talking with friends, she felt at odds with the process. She concluded that there is no good, reliable way of getting a family member situated. Speaking about her mother’s move into assisted living, Susan said: “When I was younger I couldn’t under- stand why it seems to happen this way. When you hear of people’s stories, so often . . . there’s some calamity that occurs, and then there is a crisis and you have to do everything in a crisis. And that seems so stupid, when it could be something that you could plan for, and you could plan for it together, and everyone could have a say, you know, in the decision mak- ing. My understanding now is that, I now understand why it never works that way, or seldom works that way, because I can understand the older family member wants to maintain themselves in their own home. And until there is proof positive that they can’t, which usually comes in the form of a calamity, then you’re at odds. And so I don’t see that there is usually a positive planful way to do this.”

The Goal of the Chesapeake

An assisted living residence is often defi ned by what it isn’t—a nursing home. Clare remarked in one interview that nursing homes have a nega- tive reputation, and we heard this repeatedly from families, residents, and staff. Assisted living, she pointed out, “has a reputation of being nicer, homier, more comfortable than nursing homes,” and she speaks of it as a good option for individuals seeking long-term care.

Who does well at the Chesapeake? According to Clare, those who do are the “social butterfl ies like the Ms. Mitchells and the Ms. Woods, and the, you know, people that like—even someone like Glenda Martin, who’s

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so pleasantly confused, but loves to be around people, loves interaction. Those types of people, I think do really well. Although you have your apartment, it’s still not a private place. They’re eating with all these people. . . . you have care aides in and out of your room checking on you, and I mean, there’s a lot of commotion. There’s a lot going on. So I think the people that thrive on having company and so forth do well here.”

Despite the apparent emphasis placed on family-administration over- sight and communication, Clare and Barry, directors at the Chesapeake, both feel that the residents are their main clients, and they echo corporate philosophy to meet residents’ needs. “My goal,” maintains Clare, “is to make sure that the residents are happy.” Although families need to be satisfi ed, “number one, fi rst and foremost, are residents.”

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