Living Our Legacies Family Caregivers’ Planning, Prevention and Engagement Framework
Detroit Family Caregivers' Project Planning, Prevention and Engagement Framework Living Our Legacies
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Living Our Legacies Family Caregivers’ Planning, Prevention and Engagement Framework
Message From Dr. Marilyn French Hubbard
Former First Lady Roslyn Carter once said, "There are only four kinds of people: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregiving." Family caregiving is an honor and sacred experience. Despite the inevitability of aging, often we as African Americans are not adequately prepared to address either of these caregiving roles. To raise awareness, Living Our Legacies will transform what ofte n can be a daunting family caregivers’ journey to an intentionally planned - for season of life with an experience of peace of mind, joy, contentment, fulfillment, and revitalization.
THE FAMILY CAREGIVERS’ JOURNEY
The family caregivers’ journey follows no one path. The needs of a loved one can vary , and the attention required can be quite overwhelming. Despite the detours of health and wellness concerns family caregivers may personally experience along the way, they remain committed to the family caregiving journey. Although such loving care provides the warmth and support an older family member may need, it can cause great physical and mental strain for the family caregiver.
A Glimpse of a Family Caregivers’ Path
In the early morning darkness, Charlene kneeled to say her morning prayers. This was a daily routine she felt she needed now more than ever. Her aging mom was beginning to require so much of her attention. Even though Charlene felt overwhelmed, distressed, and at times depressed, she knew she needed to push through. After all, she knew caring for her ninety-year-old mother was just what a loving daughter was supposed to do. As she slowly stood up, she immediately sat down to catch her breath. For the last month she had been experiencing tightness in her chest and frequent headaches. Although Charlene knew she needed to see the doctor, she felt it would just have to wait. Her mom needed her.
She gathered herself and hurried to catch the 5:45 a.m. bus to her mother’s house. As Char lene entered the apartment, a wave of fear took over as the smell hit her. She flicked on the light switch and there standing in the dark was Mom shivering in her soiled nightgown. Her thin, veined hands gripped the edge of the kitchen counter like a lifeline. “Dear God, not again,” Charlene thought. Her temple began to throb and once again her chest tightened. “Mama?” Charlene said softly. “Mama, it’s me, Charlene. Are you ok?” Her mom turned toward her. Fear and confusion clouded her eyes. “Charlene, is that you?” she softly crooned. Charlene approached, avoiding the accident on the floor, speaking in quiet tones. With a gentle rub, she reassured her, “It’s ok, Mama. I’m here.”
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Living Our Legacies Family Caregivers’ Planning, Prevention and En gagement Framework
It was going to be another one of those mornings. It was clear her mother needed more care than her twice-a-week visits. Charlene got her mom all cleaned up and walked her to the old recliner to rest. While cleaning and preparing breakfast, she was suddenly overwhelmed with feelings of distress. Her mom’s episodes were becoming more frequent. Something had to be done, but she just wasn’t sure where to begin. Charlene whispered a prayer for strength. This was a lot to bear alone. Charlene, age 60, was the youngest of three siblings, yet she was the one everyone depended on to make it all work. She knew she had to figure something out, and Pastor Jenkins came to mind. He was always a source of inspiration. She thought maybe he could be a resource to get the help she needed. She gave him a call. She shared what was happening with Mom and her fears about her inability to give her mom the attention needed. He reassured her that she was doing a great job. Pastor Jenkins told Charlene he didn’t have the answers for how she could get the help needed to care for her mom, but he prayed that God would continue to give her the strength she needed. Pastor Jenkins ’ words were a mome ntary comfort, but Charlene still had unanswered questions. She needed transportation assistance but didn’t know who she could call. Her mom needed medical attention to address her bouts of disorientation and all of the symptoms that followed, but she wasn ’t certain what visits her mom’s medical insurance would cover, nor did she know how to even inquire. Charlene knew she needed someone to guide her through this caregiving process, but it had to be someone she could trust. She felt vulnerable, hopeless, and frustrated for simply not knowing what to do or who she could call on for help.
Charlene’s story represents the often- unnoticed family caregivers’ commitment to caring for the aging population in the Detroit African American community. African American older adults are in poorer health compared to the total population. The declining health conditions of loved ones will result in more families being faced with decisions to provide care for older family members. The role of the family caregiver for an older adult can become greatly burdensome and debilitating to one’s well -being, especially if intentional self-care and support from other sources are not accessible and utilized. The Ralph C. Wilson, Jr Foundation , a philanthropic organization, recognizes the communal nature of African American culture and understands the
Nationwide it is estimated that over 40 million family caregivers are caring for aging parents, neighbors, and friends.
key to accomplishing anything is through relationship building. Relationships build trust and trust builds community. Historically, the African American church has been responsive to the needs of its community members. To initially elevate the role of and support for family caregivers, the advice and counsel from Rev. Dr. James C. Perkins, Pastor , Greater Christ Baptist Church; Rev. Dr. John E. Duckworth, Pastor , Gethsemane Missionary Baptist Church; Rev. Dr. Steve Bland Jr., Senior Pastor, Liberty Temple Baptist Church; and Rev. Cindy Rudolph, Pastor, Oak Grove AME provided guidance to Dr. Marilyn French Hubbard, a retired healthcare executive, as she assumed leadership in developing a Detroit faith community program to support caregivers of older adults. This initiative see ks to integrate a family caregiver’s model titled Detroit Family Caregivers’ Project— Living Our Legacies within the Detroit African American Churches. The fostering of faith-community involvement extends the opportunity for the Detroit Family Caregivers’ P roject — Living Our Legacies to connect the existing church community caregiving focuses and to partner with various other caregiver services in the community.
We are able to represent different theological perspectives. And I think that’s a beautiful thing because it gives people many options. I think we share something in common and that is that we are here to meet the spiritual, social , and educational needs of our people.
—Reverend Cindy Rudolph of Detroit’s Oak Grove AME Church
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Living Our Legacies Family Caregi vers’ Planning, Prevention and Engagement Framework
FAMILY CAREGIVERS’ CRISIS AT A GLANCE
Family Caregiving for an Aging Population
As the United States population becomes increasingly more ethnically and culturally diverse, there is a greater need to understand the cultural determinants of family caregiving responsibilities. After 20 years of research and data collection, The Detroit Area Agency on Aging reported in Dying Before Their Time III , the Detroit death rate for people ages 50 to 59 is 122% higher than those of the same age in the rest of Michigan. The death rate for people ages 60 to 74 is 48% higher. Chronic illness plays a major role in why Detroit's older adults are dying prematurely. It is noted that 89% of them have at least one chronic illness. More than one-third (39%) have three or more chronic illnesses. The most common include hypertension, arthritis, heart disease, stroke, dementia, and diabetes.
In Detroit
In the rest of Michigan
Age Group Death Rate
African American families in the Detroit community make up 80% of the population and will be faced with decisions to provide care for older family members. The societal challenge to meet the physical, mental, spiritual, and social needs of aging adults underscores the needs of professionals and care providers to not only understand the factors that affect aging and living well, but the needs of the primary family caregivers as well. Family caregivers tend to experience stress and strain from functioning in multiple roles (spouse, parent, employee, business owner, community leader) while providing care to an aging family member. With an estimated annual income in Detroit of $34,000, the economic worries add to the family caregivers’ financial limits to care for their families and older loved ones. As the aging populations of African American churches increase, it is critical for all faith communities to learn how to bring gospel, comfort, peace, and resources to the family caregiver.
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Living Our Legacies Family Caregivers’ Planning, Prevention and Engagement Framework
Caring for the Family Caregiver
The family caregiver's journey, at times, can feel isolated and lonely. The commitment to care for an aging loved one can cause depression, mental strain, and even physical pain. Given the demands and the responsibilities that family caregivers must face, support from congregational church members who share a common faith could be a real benefit. In its extended role, as kind of an extended family, the African American church is in a unique position to play a vital role in mitigating family caregiving stress due to the emphasis on Christian faith and service. With the focus of the Detroit Family Caregivers’ Project— Living Our Legacies to give much attention to family caregivers’ self -care, living well, and living legacies, the Ralph C. Wilson Jr Foundation created an opportunity for collective efforts. As a result, an interdisciplinary think tank including social workers, ministers, hospice workers, mental health professionals, Detroit chaplains , and hundreds of faith leaders of several Christian denominations has pledged to provide support to the growing numbers of family caregivers in the African American Detroit community through an initiative called “Caring Congregations.” “Caring Congregations” was developed to build on current acts of care, caring, and caregiving and to extend guidance to the Detroit Family Caregivers’ Project—Living Our Legacies that fosters support for family caregivers. The effort is to strengthen families by building on the existing traditions and legacies of care and caregiving that African American churches currently provide family caregivers in their need for community, information, education, resources, and assistance in areas that may include both formal (professional) support and informal (friends, neighbors, family) support. Caring Congregations will pave a path for family caregivers that will foster an initiative to help them heal spiritually, mentally, emotionally, financially, and physically as well as reduce feelings of isolation and loneliness.
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DETROIT FAMILY CAREGIVERS’ PROJECT —LIVING OUR LEGACIES
Living Our Legacies by Design
The development of culturally appropriate services can only be achieved through knowledge of the culture and the involvement of culturally competent social and human service professionals who understand the nuances of the culture. With such clarity of intent, the Detroit Family Caregivers’ Project— Living Our Legacies is a proactive and preventative educational, planning, and Facilitator resource for improving the state of family caregivers’ and faith communities’ crisis -response. It will train one-hundred Facilitators with the knowledge and skills to prepare individuals, families, and congregations for the occasions of family caregiving and the challenges of illness, accident, disability, aging, isolation, loneliness, grief, and end-of-life. This resource will equip current and future caregivers to plan for the situations and circumstances contributing to individual, family, and faith-community crises. The Detroit Family Caregivers’ Project— Living Our Legacies meets participants where they are and provides preparation and planning for those who are currently caregivers, those who will be caregivers, those who have been caregivers, and those who will need to be cared for in the future.
Family Caregiver
The Detroit Family Caregivers’ Project— Living Our Legacies aims to develop a training delivery model and caregiving education curriculum with a special emphasis on prevention and self-care to improve the health and wellbeing of family caregivers who care for older adults. Facilitators will be trained to guide individuals and families to:
• Self-identify as a caregiver and understand what is needed in the process • Exercise Self-Care (physical, mental, spiritual, social, medical, and financial) • Prepare and Plan for current and future caregiving responsibilities • Build Awareness of Cultural Competency (accessibility, privacy, culture) • Access Community Resources considering the social determinants of health
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Faith Communities
The African American church is a trusted source of support in African American culture. It is both community and spiritually based. Family caregivers, oftentimes in a state of crisis, turn to their faith leaders and faith communities to address their needs. Although the Church is a place of community that embraces wholeness through inspired faith, ongoing support, and spiritual direction, faith leaders and faith communities are not always prepared nor equipped to adequately address the family caregiver’s needs. The Detroit Family Caregivers’ Project— Living Our Legacies recognizes the legacy of the Church to be responsive to the needs of the community. An innovative and transformative methodology to train Facilitators will increase the Church’s capacity to help provide practical solutions and resources, in addition to spiritual guidance and inspiration that can help to foster improved health, well-being, and emotional resilience for family caregivers and their families.
Resources
Historically, some African American caregivers find it difficult to trust agencies and service providers who request personal information regarding finances, the names of relatives who have used similar services, and the disclosure of personal assets during the initial intervention. The Detroit Family Caregivers’ Project— Living Our Legacies will align with the Detroit Area Agency on Aging’s and other resource and service providers’ efforts to coordinate and centralize the scattered network of caregiving service providers, resource referral, and supportive services. Family caregivers will not be forced to cope alone because their families and faith communities will have anticipated and prepared for the seasons of life ahead.
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FAMILY CAREGIVERS’ DECISIONS
The family caregivers’ journey is a unique path filled with emotions and uncertainty. The family caregivers’ pathway is never linear. Navigating the varying stages of a loved one's health requires many caregiving decisions to include :
Care Management
Resource Eligibility
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Food/Nutrition
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Housing
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Transportation
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Insurance
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Traditions/Cultural Consideration Wishes/Preferences
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Disease Management
Hospital
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Pharmacy
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Behavioral Health
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Social Services
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Medical Equipment
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Technology
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Self-Management
Spiritually
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Mentally
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Physically
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Emotionally
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Financially
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Without adequate information, education, and resources, family caregivers struggle personally, mentally, physically, and emotionally caring for aging loved ones. The Detroit Family Caregivers’ Project— Living Our Legacies will bring awareness to family caregivers through faith community commitment to enable the family caregiver and family caregiver supporters to plan for self-care and minimize the family caregiver's journey’s negative physical, mental, and emotional strain . In collaboration with faith communities and palliative-care professionals, Detroit Family Caregivers’ Project— Living Our Legacies will help members navigate the essentials of later life planning and decision-making. Family caregivers can be better prepared and familiar with their critical resources when needed. They will better understand their faith tradition’s beliefs related to life -sustaining devices, hospice, and other family caregiving decisions, becoming better equipped to support others and to be supported as well. The family caregiver will not only be well informed about their wishes, desires, and preferences during this time but also informed of these caregiving factors as a family caregiver. Detroit Family Caregivers’ Project— Living Our Legacies embraces that each family caregiving path ultimately leads to a way for family and friends to honor the legacy of their aging loved ones. Legacy is about living. The legacy of loved ones raises crucial spiritual reflections on the purpose of life, heightens the awareness of feelings of guilt and forgiveness, helps the process of healing, hope, and facing challenges. Ensuring that family caregivers honor the legacies of loved ones will help them to decide what matters most as they navigate the family caregivers ' journey.
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FAMILY CAREGIVERS’ LEVELS OF IMPACT
The Detroit Family Caregivers’ Project— Living Our Legacies will utilize and adapt the Center for Disease Control’s Social Ecological Model for Prevention, Planning and Community Engagement to transform the family caregiving experience one individual at a time. The Living Our Legacies family caregiving project will impact the Individual who is the family caregiver, build the Relationship with a caregiver’s family, foster Community in partnership with Caring Congregations, and advocate for Social Change that brings awareness to the social determinants of family caregiving. The Detroit Family Caregivers’ Project—Living Our Legacies will transform the family caregiving journey by strengthening the faith congregations’ capacity to lessen the crisis process. This innovative approach will change the family caregiving experience from an unexpected family caregiving crisis to a planned-for season of life. Family caregivers will go from navigating the caregiving journey uninformed to being well-informed, and from lacking the wherewithal to becoming knowledgeable and educated. Family caregivers will be empowered to navigate the family caregiving journey experiencing peace of mind, exercising self-care, being well planned and highly prepared .
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Detroit Family Caregivers ' Projec t Planning, Prevention and Engagement Framework Living Our Legacies
For more information contact 100CaringCongregations@gmail.com and livingourlegacies@gmail.com
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