Inside Assisted Living: The Search for Home

2 Miss Helen at Valley Glen Home

15` T WO Miss Helen at Valley Glen Home The story of Miss Helen’s move to Valley Glen Home begins more than 20 years ago. When asked how her mother came from Tennessee to reside in a small assisted living home in Maryland, Miss Helen’s daughter, Alicia, said, “Well, I guess we can almost go back another generation . My grandmother also had Alzheimer’s. . . . She lived with us growing up, . . . but at some point in time, she had to enter a nursing home.” In this chapter, we hear a daughter’s account of choosing a long-term care setting for her mother. We learn about the importance of the relationship between care provider and care receiver during the settling-in process , and how they work together making operational decisions about who can stay and who must go. The key issues presented in this chapter include the challenges that families face in locating a long-term care setting for a relative; the range of individuals and groups that can be involved in one person’s move to an assisted living facility; the importance of the assisted living operator in shaping the local culture; how the individual’s needs are defined and determined in conflicting ways by different individuals and groups; and the challenges of finding (or creating) the right fit between person and place. Introducing Miss Helen Five older women lived at Valley Glen Home when our research began in the spring of 2002. We chose to focus on Miss Helen because we felt that her unique characteristics and story best exemplify the essence of this 16 INSIDE ASSISTED LIVING small assisted living residence. Miss Helen did not match up to the national statistics on the average assisted living resident because she lacked the ability to talk, feed herself, walk, transfer, or manage any form of personal care without assistance from one—and sometimes two—other people. At 79 years old, she was about five years younger than the national average, and when we met her, she had lived at Valley Glen for a little more than three years, more than the national average of 28 months (NCAL 2007). She would reside there for nearly three more years until her death. Finally, she was the only African American resident at Valley Glen; the other residents were white. Beyond these demographic reasons for focusing on Miss Helen, another motivation for profiling her story came from a compelling description written by the ethnographer who did most of the fieldwork at this setting: We were all admiring Miss Helen’s marvelous hair, fine elegant braids all over her head. It was beautiful. . . . One of the temporary caregivers, an African woman, took special care to attend to Miss Helen’s hair . . . [with] intricate braiding. I marveled at how expressive Miss Helen could be without the ability to lift her head, to voluntarily move much of her body, or to speak. . . . We all commented on it, and it was easy to see Miss Helen responding with delight, even though her range of expressiveness is severely limited. As Matilda [a direct care aide] has indicated, you can tell how she feels. You can tell. This description is noteworthy: here was an assisted living resident who could not voluntarily move her body and thus required total assistance to do anything. But in this depiction of hair braiding, something much more than “grooming” (to use the standard long-term-care language to describe hair care) was clearly taking place. It was some quality that we did not yet know how to label, yet it was recognizable here and in other examples we observed over time at Valley Glen. Miss Helen’s case, we believed, could teach us lessons about the needs of impaired older persons and the capacity of both the individuals and the systems intended to care for them. Researchers have described the increasing number and severity of health conditions—both physical and cognitive or mental—of assisted living residents in recent years (NCAL 2007; Rosenblatt et al. 2004; Zimmerman et al. 2005a). Miss Helen seemed to represent that trend, if at an extreme level. One component of this study included performance-based MISS HELEN AT VALLEY GLEN HOME 17 evaluation of physical and mental abilities on the “focal case” residents in the study, including evaluation of each individual’s concentration and memory, balance, walking speed, muscle strength, and height and weight. The clinical...