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pproximately 6,000 people each year access at least one of our services or volunteer in the Care Team program of congregation-based caregiving. They have some understanding of who we are now and what we do. However, relatively few of these program-related people or hundreds of annual donors have known us throughout our history or know how we became who we are now. Each issue of Connections this year tells part of the history of Interfaith CarePartners as we celebrate the 25th anniversary (1986 – 2011) of the Care Team concept that led to the birth of Interfaith CarePartners. Each issue highlights one era of our history: early years (1986 – 1990) in the May issue, stewardship of our mission (1990 – present) in this issue, and local and national impact (December issue). Summary of the Beginning The Care Team® concept developed as Dr. Earl Shelp and Dr. Ron Sunderland prepared to support Jay Jones, Shelp’s research assistant, following Jay’s diagnosis with HIV/AIDS in 1985. Sunderland and Shelp, professors in the Texas Medical Center, spent time in an AIDS treatment clinic in order to learn about AIDS and prepare to care for him. They met many men and women with HIV/AIDS in the clinic who had no one to care for them. They were not content to allow these people to die alone, so they began to assist them in many ways and to be with them as they died. There were too many people for them to serve alone, so they began first to recruit fellow clergy, and then members of local congregations to form loving teams of volunteers to befriend and serve these people whose lives were ending prematurely and in isolation. Thus, the Care Team concept of shared, coordinated, and supervised congregation-based caregiving was created. In January 1986, the AIDS Care Team® project was launched. Concurrently with these pioneering caregiving activities, they were actively educating people in local congregations and nationally through articles, books, and presentations at conferences calling people of God to a compassionate response to AIDS. In 1988, the Care Team concept and method were institutionalized when they resigned faculty appointments and founded Interfaith CarePartners. They were convinced that the lessons in caregiving learned as they
Volume 24, September 2012
25 Years of Caregiving: 1990-2011, Building on a Foundation
cared for people with HIV/AIDS could be adapted to assist persons with other conditions who were in decline or impaired. Stewardship of the Concept At the time 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 serve persons with other disabling conditions. During 1990 – 1991, six congregations were part of a ‘general care’ or GenCare Team pilot project that utilized the team concept and practices that were highly effective in the AIDS Care Team project. 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 expected 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 Line dancing during the rodeo with progressive needs for support Alzheimer’s Care Team members at
Continued on page 2 Congregation Beth Israel
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A little cold nose love at an Alzheimer’s Care Team ‘Gathering Place’ activity time.
25 Years of Caregiving Continued from page 1
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 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 today. The team at Memorial Drive
Presbyterian Church has a second as well as neighbors as they were able. pioneering role in the Alzheimer’s Northwoods Presbyterian Church Care Team project. Rather than and Trinity Episcopal Church (Baytown) meeting persons with dementia in were the first congregations to give life their homes, they began in 1997 to the new project. Trinity Episcopal to meet them at the church twice has served continuously since 1994. monthly for 3.5 hours of stimulating Northwoods Presbyterian served from activities and lunch. This form of 1994 – 1997 and 2006 till the present. direct care and respite became Teams in this project have an inclusive known as an Alzheimer’s Care mission. They respond to needs approTeam ‘Gathering Place’ and is now priate for laypeople to meet that are due used by nearly all Alzheimer’s Care to any disease or condition. This feaTeam projects. ture makes a Second Family Care Team Our belief that the Care project especially attractive to smaller, Team concept and methods could as well as larger congregations. Its apbenefit others was vindicated when peal to smaller congregations, often the Alzheimer’s Care Team project with aging and declining memberships, took root and grew. The families with has meant that many of these teams dementia that we met and served have relatively short life spans. helped us to appreciate how common The fourth expression of the Care physical changes that may begin in the Team concept began in 2000 in re6th decade of life and later cause people sponse to the respite needs of families to rely on others. We, also, recognized with an impaired child. We learned that the number of older adults in that some conphysical decline vastly exceeded gregations had those in cognitive decline. Whether special activities physically or cognitively challenged, for these families nearly all prefer to live out their days during regular in their homes. The Alzheimer’s Care worship times, Team project had become a lifeline but few shared for cognitively impaired persons and in the care of their caregivers. A new expression of these children the Care Team concept was created at home so that to embrace and support people with parents could physical limitations. have time off or We often described Care Team an opportunity to members as a ‘surrogate or extended concentrate sole- Kids’ Pals Care Team guest at Brentwood Baptist family, a second family’ for the people ly on other chilthey served. In 1994, we applied this dren. We reasoned that the Care Team image to the third expression of the method of shared and supervised careCare Team concept designed to begiving could be a safety net for these friend and assist debilitating adults of families. Of the nine congregations in any age: Second Family Care Team® the Kids’ Pals Care Team project, only project. The new Brentwood Baptist Church project was intendcontinues to serve. The ed to help congrepilot phase of this project gations remain or showed more promise become robustly than has been realized. As engaged with with the GenCare Team members who pilot project, lessons have become progresbeen learned that add sively less able strength to all expressions to be present and of the Care Team concept, involved. Most even though fewer concongregations had gregations than expected one or more prohave embraced this special grams to continue Messiah Lutheran’s Second Family ministry. contact with these Care Team members serenade Maria As noted above, the individuals and families, but few had an pioneering AIDS Care Team project organized and comprehensive program reached a plateau in 1993 when new that provided companionship, practical drugs extended life expectancy and assistance, and socialization, in addienabled self-sufficiency. Of the 101 tion to established methods of spiriteams in the ground breaking project tual care. Second Family Care Team® since 1986, St. Cecilia Catholic (1987), members filled this gap for members, Brentwood Baptist (1989), and Wheeler
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Avenue Baptist (1989) remain active. Over 4,000 AIDS Care Team members made life better for 3,953 persons from 1986 - 2011. As importantly, these 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 at least 35,000 total people as team members or persons served through 2011. 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 AIDS 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.
workshops attracted 1,140 People facing adverregistrants. sity often do not know Our embrace of where to turn or how family caregivers became to ask for help. They more comprehensive in feel vulnerable, con2008. Common Ground: fused, and, at times, Caregiver Conversations embarrassed when was introduced as a support making inquiries. The group service for caregivers. last sound they want Many support groups are or need to hear when convened and facilitated they call is a recording Juan Ortiz greets all callers by laypeople. A distinctive of menu options that feature of Common Ground is that likely do not address their individual conthese meetings are led by a volunteer cern. All calls to Interfaith CarePartners mental health professional and a former during business hours are answered by caregiver. This leadership team offers a live person who listens sympathetiprofessional expertise and sensitivity cally to the caller’s story. Questions are borne from personal experience. answered as accurately and completely Through 2011, 194 family caregivers as possible. Information and referral are have enrolled in 14 groups that meet important services to Care Team memat one of our partner congregations. bers and their care partners, as well as Most of the groups are restricted to the public. These inquiries, as well as caregivers of persons with dementia. requests for Care Team support, are the They typically meet concurrently with first opportunities we have to display an Alzheimer’s Care Team ‘Gathering one of our core values: respect, sensiPlace’ activity program attended by a tivity, and compassion for all. loved one. This timing and convenient Responding to telephone inquiries location makes it easier for a caregiver is an educational activity that is to have fellowship with others, share inseparable from the Care Team stories and resources, and receive the program. Similarly, the continued emotional support they need to meet education of team members during each day. monthly meetings has been a critical Making it easier to volunteer or feature of the program since 1986. to access help is a hallmark of all of Our educational emphasis expanded our programs. Our professional staff in 2002 to offer family caregivers an provides all support to Care Team opportunity to come together, share members at their congregations. stories and gain strength from each Educational conferences for caregivers other, and attend professionally led are located now in 5 partner workshops that address a broad congregations in Harris, Montgomery, scope of concerns such as Medicare, and Ft. Bend counties. Common Medicaid, and veterans benefits, basic Ground meetings are similarly dispersed legal documents and considerations, through our congregational network. self care, fall prevention and home Our most recent effort to support family safety, finding services, home care caregivers is directed at those who are options, navigating dementia, caring employed. for stroke survivors, and many more. Studies indicate that 68% of careBy 2011, six conferences for family givers work full or part time. Being caregivers featuring more than 100
Standing room only at a conference for caregivers at St. Luke’s United Methodist 3
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25 Years of Caregiving Continued from page 3
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 60 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 value 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 laserlike 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 CarePartners is our commitment to excellence in all that we do. Interfaith CarePartners’ 25-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. The final issue of Connections this year will discuss the impact Interfaith CarePartners has had locally and nationally. The issue will feature a statistical summary of activities, testimonies, and tributes as we conclude a year-long celebration of 25 years of caring for weak and vulnerable people by creating caring communities.
Connections is the newsletter of Interfaith CarePartners® Email:
Earl. E Shelp, Ph.D. President Ronald H. Sunderland, Ed.D Co-Founder Janie Alderman Design Layout and Design
“Creating Caring Communities”
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