For nearly two decades, the Eden Alternative™ and geriatric care management have been treading parallel paths on the long-term care continuum; both challenging conventional wisdom and practice, both seeking higher ground in quality service delivery, both demanding bold professional creativity and passion. Opportunities for collaboration between these two pioneer efforts have been largely ignored. In his landmark book “What Are Old People For?” Bill Thomas, MD, identifies the three “plagues” of institutional elder care as loneliness, helplessness and boredom.
Dr. Thomas describes in excruciating detail a life devoid of companionship, intimacy, self-direction and meaningful activity. Consider the non-English speaking, visually and hearing impaired elder with no local family, who is placed in a long-term care facility as a result of poor hygiene, poor nutrition, frequent falls, and a looming housing eviction notice. Previous relationships with other residents of the senior housing complex are severed. Facility staff speaks primarily in English. The menu is not conducive to cultural variation. The elder can identify no possible option for return to the community and becomes depressed, withdrawn and resigned to “institutionalization.”
It is precisely this outcome that Thomas hopes to avoid by infusing the Eden Alternative™ Principles into the facility. Thomas also posits an exquisite dichotomy between “being” and “doing.” He describes adulthood as the life phase of “doing” in which the individual (often frantically) attends to education, career, family, hobbies, home, community. He considers the elder life phase as an often unrealized opportunity for “being” with commensurate attention to the inner life of self-realization, spirituality, creativity, much like Erik Erickson’s concept of generativity. Thomas challenges elder care professionals to provide elder-centered communities which will ameliorate the impact of the three plagues, place decision making in the weathered hands of our elders, consider medical treatment the servant, not the master of the consumer, and provide loving companionship and meaningful interaction. The primary focus of Eden Alternative™ activity has been in long-term care facilities throughout the country.
More recently, community care opportunities have emerged. The primary focus of geriatric care management has been the home and community setting. Geriatric care management has a potent ally in the Eden Alternative™ initiative. In the early 1990’s as Thomas began his pioneering efforts, The Robert Wood Johnson Foundation supported the development of Guidelines for Case Management Practice across the Long-Term Care Continuum.
Under the measured guidance of Connecticut Community Care, Inc. (CCCI), an advisory panel of national experts discussed, argued, debated and ultimately reached conclusions on care management principles and guidelines. Consider the first principle: Case management is a Consumer-Centered Service that Respects Consumers’ Rights, Values and Preferences. Intrinsic to case management practice is the principle that consumers have the right to have their values and preferences considered and respected. Case management strives to provide flexible services that promote the highest level of independence consistent with the consumer’s capacity and his or her preferences for care. This approach allows consumers to direct their own care to the extent possible.
Geriatric care managers are acutely aware of the insidious effects of the “three plagues” on elders at home. These clients are no less vulnerable to the untoward results of loneliness, helplessness and boredom than their institutionalized counterparts. In fact, in some situations, the aftershock is even more severe. Consider the Scott family, three elder sisters and one elder brother, residing in a blue-collar community in southern New England.
All are retired from a local bearing manufacturing plant. One sister married and left the family home; the other four lived together throughout their lifetime. The family attorney referred the siblings to the private geriatric care management practice shortly after the unexpected death of the healthiest and most independent sibling. The widowed sister had previously been placed in a skilled nursing facility. At a recent probate court hearing, the probate judge drove the two elder sisters back to their home and had the attorney confiscate the car as neither was capable of driving. At the time of the initial assessment, both sisters were found to be decidedly delusional. Both described “little men” who perched outside the kitchen window and sometimes crawled into the washing machine.
The sisters had devised a way of removing them from the washtub; they shone a bright flashlight into the tub until the “little men” disappeared. In keeping with care management and Eden Alternative™ principles; the care manager recognized that the sisters had lived for decades in this home and could continue to be cared for in this environment with appropriate supports despite the death of their brother. Their extreme isolation was clearly contributing to their delusional thought patterns. The care manager introduced a reliable personal care provider into the household. This caregiver was gradually able to assume responsibility for neglected household tasks. Personal hygiene was a critical issue for one sister. The care manager contracted with a highly skilled and determined APRN (Advanced Practice Registered Nurse) who, in conjunction with the personal care provider, gained the sister’s trust until she agreed to personal care.
This APRN was also instrumental in assessing immediate medical needs and prescribing appropriate medications when necessary. After several weeks the “little men” disappeared. Over time, additional care providers became acceptable to the sisters; but their primary provider covered the vast majority of required hours. As the sisters became increasingly frail, two separate ceiling chair tracks were installed to facilitate transfers from bed to chair to toilet and to protect the providers from back injury. Both the care manager and the APRN frequently had to challenge medical and home health providers who expressed concern regarding “safety,” risk, and the nontraditional care arrangement. These two elderly sisters lived together for many more years as they had for their entire lives.
The most important aspect of their lives was their relationship with one another. “Being” together was paramount. The geriatric care manager recognized and honored this relationship and tenaciously maintained the plan of care. Loneliness and boredom were addressed through the loving presence of the staff; most notably the primary care provider. Trips to the nursing home to visit their widowed sister became part of their monthly routine. Frequent visits by the family attorney, the care manager and APRN offered additional stimulation and support. Without the seasoned intervention of a confident, knowledgeable geriatric care manager, these two women undoubtedly would have been placed in a nursing home at the time of their brother’s death. “Mr. Arnold,” another private geriatric care management client, could not remain in his family home following the death of his siblings. Mildly developmentally disabled and illiterate, he had worked as a barber. Good social and language skills enabled him to maintain a strong customer base until his retirement.
After the deaths of his siblings, Mr. Arnold’s only relative was a distant nephew who had little involvement. The condition of the house and neighborhood had seriously deteriorated and Mr. Arnold’s loneliness, boredom and helplessness resulted in severe behavioral and emotional decompensation. Once again, the family attorney made the referral for care management assessment and intervention. Appointments were expeditiously established with a variety of medical specialists, including a geriatric psychiatrist and primary care physician, as Mr. Albert’s health needs had been ignored for quite some time. The care manager was careful never to allow medical intervention to trump other quality-of-life issues. The care manager was faced with the challenging dilemma of finding suitable housing.
After considerable deliberation, it was determined that it was important for the client to reside in the same community. Such a location would facilitate any possible visits from the nephew, old customers and friends in the community, as well as the attorney and the care manager. This also took into consideration the expressed client resistance to move as well as his fragile mental status. A local assisted living facility was identified and the care manager worked closely with Mr. Arnold and the staff to facilitate the transition from home. Numerous meetings were held to address nutrition, personal care, companionship, and interests.
In order to mitigate the effects of loneliness and boredom, an engaging personal care provider was hired to escort Mr. Arnold on various outings hosted by the facility. He remains interested in local and national politics and the state university’s women’s basketball team. A volunteer at the assisted living facility spends some time with him. Since his illiteracy complicates his ability to use the telephone, the care manager procured photographs of all potential contacts and taped them to a push button phone, allowing Mr. Arnold to simply press the button next to the face of his attorney, care manager, etc.
In an amazing turn of events, a city resident found the old barber shop sign that had hung outside of Mr. Arnold’s shop and actually located Mr. Arnold at the assisted living facility. A reception was hosted by the assisted living facility for the mounting of the old barber shop sign in their activity room. Local dignitaries, television crews, newspapers, the attorney, and care manager were all in attendance! The synergy between the Eden Alternative™ principles and those of geriatric care management offers impetus for enhanced collaboration.
Both initiatives must be vigilant in the determination not to “drift” toward more highly regulated, riskadverse models. Opportunities for mutual education, program development and advocacy should be identified. Our elders deserve nothing less!
Advocare Care Management is an organization of patient advocates for seniors in Boca Raton. Our mission is to give you the resources for taking care of a loved one including, advice, tools, assessments, and connections. We are senior care advocates that serve Palm Beach, Broward, and Miami-Dade counties. Our team is available 24 hours a day including holidays, late nights, evenings, and weekends. Contact Advocare Care Management today and learn more about how we can make the process of caring for a loved one easier.
Reprinted with permission from Aginglife.org. Contact Advocare Care Management and let us help you.