Stewardship of the Concept
As the AIDS Care Team project was reaching its peak in terms of persons served (311 in 1991, 429 in 1992, 425 in 1993), the first attempt began to embrace and serve persons with other disabling conditions. During 1990 – 1991, six congregations were recruited to participate in a pilot project in which congregational teams would provide companionship, practical assistance, and non-proselytizing spiritual support to persons with any disabling condition. Congregations recognized that their support of members for short periods tended to be more effective than when these needs were prolonged. We wanted to determine if a GenCare Team (a neologism for ‘general care’) could add to a congregation’s comprehensive care of its members. It is important to note that the founders’ concern for the ‘weak and vulnerable’ was not limited to people with AIDS.
To our surprise and dismay, the project did not gain traction. But, it was not a failure. Something is always learned during a research or pilot project, even when the desired outcomes do not result. When the GenCare Team project was evaluated, several conclusions were reached.
First, the people to be served by team members were nonspecific. Signaling that the teams would support anyone with needs did not attract people whose lives had been touched by a particular disease or condition that often creates an interest to assist that particular population.
Second, there was no sense of urgency or intensity to prompt people to volunteer when the population to be served was not named and the intensity of their needs was not explicit.
Third, members of congregations in their own ways were accustomed to caring for people with familiar diagnoses or conditions. No special knowledge or skills seemed necessary to care for a frail older adult, person with cancer, diabetes, congestive heart failure, arthritis, or another condition, in contrast to the new disease, AIDS.
In light of these conclusions, an oncologist member of the board of directors, Paul Gustafson, M.D., suggested considering persons with Alzheimer’s disease or another dementia because of their progressive needs for support and the value of time off for family caregivers. This redirection of emphasis addressed the first and second shortcomings of the GenCare Team pilot project. Further research showed that it responded to the third snag, as well. No partner congregation in the AIDS Care Team project had a special ministry for families affected by dementia. In addition, they had no idea about how the congregation could remain robustly connected to and supportive of these families during their pilgrimage with dementia. Lastly, they had never been taught how to relate to a person with dementia or to respond to the particular stresses of family caregivers.
The Care Team concept was retooled to serve families affected by dementia. We asked congregations to join the Alzheimer’s Care Team® project to fill a gap in their care of members and neighbors with special needs. We hoped congregants previously touched by Alzheimer’s disease or another dementia, as well as all others generally concerned for ill persons, would welcome this opportunity to share their journey. And, we prepared to teach team members the essentials of the manifestations of dementia, how to relate to persons with dementia, and how to support family caregivers.
Memorial Drive Presbyterian Church (Houston) was the first congregation to join the Alzheimer’s Care Team ministry in January 1993. Team members spent time in the homes of persons with dementia so that family caregivers could attend to personal matters or simply rest. This ‘time off’ is called respite. Of the eighty-two (82) congregational Alzheimer’s Care Team ministries formed since 1993, 59 are lovingly caring for persons with dementia and their family caregivers as of December, 2012.
The team at Memorial Drive Presbyterian Church has a second pioneering role in the Alzheimer’s Care Team project. Rather than meeting persons with dementia in their homes, they began in 1997 to meet them at the church twice monthly for 3.5 hours of stimulating activities and lunch. This form of direct care and respite became known as an Alzheimer’s Care Team ‘Gathering Place’ and is now used by nearly all Alzheimer’s Care Team projects.
Our belief that the Care Team concept and methods could benefit others was vindicated when the Alzheimer’s Care Team project took root and grew. The families with dementia that we met and served helped us to appreciate how common physical changes that may begin in the 6th decade of life and later cause people to rely on others. We, also, recognized that the number of older adults in physical decline vastly exceeded those in cognitive decline. Whether physically or cognitively challenged, nearly all prefer to live out their days in their homes. The Alzheimer’s Care Team project had become a lifeline for cognitively impaired persons and their caregivers. A new expression of the Care Team concept was created to embrace and support people with physical limitations.
We often described Care Team members as a ‘surrogate or extended family, a second family’ for the people they served. In 1994, we applied this image to the third expression of the Care Team concept designed to befriend and assist debilitating adults of any age: Second Family Care Team® project. The new project was intended to help congregations remain or become robustly engaged with members who become progressively less able to be present and involved. Most congregations had one or more programs to continue contact with these individuals and families, but few had an organized and comprehensive program that provided companionship, practical assistance, and socialization, in addition to established methods of spiritual care. Second Family Care Team members filled this gap for members, as well as neighbors as they were able.
Northwoods Presbyterian Church (Houston) and Trinity Episcopal Church (Baytown) were the first congregations to give life to the new project. Trinity Episcopal has served continuously since 1994. Northwoods Presbyterian served from 1994 – 1997 and 2006 till the present. Teams in this project have an inclusive mission. They respond to needs appropriate for laypeople to meet that are due to any disease or condition. This feature makes a Second Family Care Team project especially attractive to smaller, as well as larger congregations. Its appeal to smaller congregations, often with aging and declining memberships, has meant that many of these teams have relatively short life spans.
The fourth expression of the Care Team concept began in 2000 in response to the respite needs of families with an impaired child. We learned that some congregations had special activities for these families during regular worship times, but few shared in the care of these children at home so that parents could have time off or an opportunity to concentrate solely other children. We reasoned that the Care Team method of shared and supervised caregiving could be a safety net for these families. Of the nine congregations in the Kids’ Pals Care Team® project, only Brentwood Baptist Church (Houston) continues to serve. The pilot phase of this project showed more promise than has been realized. As with the GenCare Team pilot project, lessons have been learned that add strength to all expressions of the Care Team concept, even though fewer congregations than expected have embraced this special ministry.
As noted above, the pioneering AIDS Care Team project reached a plateau in 1993 when new drugs extended life expectancy and enabled self-sufficiency. Of the 101 teams in the ground breaking project since 1986, St. Cecilia Catholic (Houston, 1987), Brentwood Baptist (1989), and Wheeler Avenue Baptist (Houston, 1989) remain active. Over 4,000 AIDS Care Team members made life better for 2,033 persons from 1986 – 2012. As importantly, theses trailblazing volunteers inspired us to believe that the Care Team concept and methods could be adapted to provide comparable benefits to people with other physical and cognitive difficulties. Each successive Care Team project benefited from the successes and shortcomings of its predecessors. The goal has always been to create and sustain effective means by which congregations could bless and be blessed as they embrace underserved weak and vulnerable people.
Complementing the Signature Program
Our first priority has always been the excellence and integrity of the Care Team program. It is the seminal concept from which a caregiving program has grown to involve approximately 22,500 total people as team members or persons served through 2012. This record of volunteer caregiving has been written in partnership with Jewish and Christian congregations in Harris and four adjacent counties. It is our signature service program that has been complemented, at times, by other services that contributed to the safety, independence, comfort, and dignity of persons served by teams.
During the years the ADS Care Team project was most active (1986 – 1993), we provided pantry, case management, and professional counseling services for people with HIV/AIDS. These auxiliary services were consistent with our mission and funded mainly by government contracts. They were undertaken because we could deliver them effectively and underwrite the costs while being disciplined to avoid adverse effects of ‘mission creep.’ These services ended when other agencies began the service, our expertise was not needed, or funding contracts ended.
As we better understood the needs of persons with dementia, physically impaired adults of any age, families of special needs children, and family caregivers, in general, we have offered other services to complement the day-to-day kindnesses of Care Team members that make life better for the people they serve.
Responding to concerns and answering questions about where to go for help have always been part of the job description of our professional staff. People facing adversity often do not know where to turn or how to ask for help. They feel vulnerable, confused, and, at times, embarrassed when making inquiries. The last sound they want or need to hear when they call is a recording of menu options that likely do not address their individual concern. All calls to Interfaith CarePartners during business hours are answered by a live person who listens sympathetically to the caller’s story. Questions are answered as accurately and completely as possible. Information and referral are important services to Care Team members and their care partners, as well as the public. These inquiries, as well as requests for Care Team support, are the first opportunities we have to display some of our core values: respect, sensitivity, and compassion for all.
Responding to telephone inquiries is an educational activity that is inseparable from the Care Team program. Similarly, the continued education of team members during monthly meetings has been a critical feature of the program since 1986. Our educational emphasis expanded in 2002 to offer family caregivers an opportunity to come together, share stories and gain strength from each other, and attend professionally led workshops that address a broad scope of concerns such as Medicare, Medicaid, and veterans benefits, basic legal documents and considerations, self care, fall prevention and home safety, finding services, home care options, navigating dementia, caring for stroke survivors, and many more. By 2012, seven conferences for family caregivers featuring more than 160 workshops and five half-day intensive workshops attracted 1,625 registrants.
Our embrace of family caregivers became more comprehensive in 2008. Common Ground: Caregiver Conversations was introduced as a support group service for caregivers. Many support groups are convened and facilitated by laypeople. A distinctive feature of Common Ground is that these meetings are led by a volunteer mental health professional and a former caregiver. This leadership team offers professional expertise and sensitivity borne from personal experience. Through 2012, 225 family caregivers have enrolled in 17 groups that meet at one of our partner congregations. Most of the groups are restricted to caregivers of persons with dementia. They typically meet concurrently with an Alzheimer’s Care Team ‘Gathering Place’ activity program attended by a loved one. This timing and convenient location makes it easier for a caregiver to have fellowship with others, share stories and resources, and receive the emotional support they need to meet each day.
Making it easier to volunteer or to access help is a hallmark of all of our programs. Our professional staff provides all support to Care Team members at their congregations. Educational conferences for caregivers are located now in 5 partner congregations in Harris, Montgomery, and Ft. Bend counties. Common Ground meetings are similarly dispersed through our congregational network. Our most recent effort to support family caregivers is directed at those who are employed. Studies indicate that 68% of caregivers work full or part time. Being employed can create additional challenges and strains for family caregivers. Fatigue, competing responsibilities, stress, time constraints, and, perhaps, distance from a loved one, alone or in combination, can impose an extra burden on employed caregivers and possibly threaten their careers. In order to serve these ‘difficult to identify’ and ‘hard to reach’ caregivers, Preparing and Sharing: Tips and Tools for Caregivers began in September 2011 as a pilot project of workplace ‘lunch and learn’ monthly meetings.
Southwestern Energy Company is the first to make our resources available to employees. Our staff or other invited professionals address topics of interest and respond to individual employee concerns over lunch provided by the company. Of 425 employees in the building, more than 70 different employee caregivers have attended one or more times. The participation and comments by employees indicate that the project is meeting a need. Additional companies are being recruited to be part of the pilot project. Educating and assisting employed family members caring for a relative is another means by which we fulfill our mission to care for weak and vulnerable people. As in all of our programs, making it easier for people to get help takes priority over the convenience of staff.
Some caregivers and physically or cognitively impaired persons need professional guidance, at times, to identify options and to secure services. The people we serve in the Care Team program typically regard our staff as reliable, trustworthy, and respected allies in their journey. When they need professional assistance, they turn to us. These calls have been answered since 2000 by two of our licensed social workers with advanced degrees and special training and certified as Geriatric Care Managers. They help care partners identify goals, jointly design a plan to reach them, and assist in securing needed services. Our Geriatric Care Managers and each of the other services we offer strengthen the safety net that Interfaith CarePartners is to the people we serve.
Throughout our history, we have developed and added services in response to needs observed among people served in our core Care Team program. Each addition was conceived and tested to determine that we could provide it effectively. Each had to express our core values of respect, sensitivity, and compassion for all. Each new service had to help us more fully embrace our diverse constituencies and strengthen those relationships.
Dedication to Excellence
This short and selective account of an evolving Care Team program and complementary services from 1990 – 2011 describes how our mission to care for weak and vulnerable people has expanded. It is a story of a laser-like focus on and stewardship of a foundational caregiving methodology upon which one of the nation’s largest, multifaceted, and awarded volunteer caregiving programs has been built. A key to the stability and growth of Interfaith Care Partners is our commitment to excellence in all that we do.
Interfaith CarePartners’ 26-year history is a testament to the power of love and compassion to bring people of different faiths and walks of life together in relationships of mutual care. We are privileged to be at the center of an interfaith and interdisciplinary network in which the strong and the weak both bless and are blessed. Our record of innovation and service is a tribute to all of the Care Team members, congregations, agencies, donors, employees, and care partners who opened their hearts to each other and demonstrated their need for each other.