While 25 million people in the United States are caregivers to family members who aren’t able to care for themselves, they often have no relief from their demanding responsibilities, which can create physical, emotional, spiritual, economic and social problems for them.
The National Alliance for Caregiving (NAC) says the number of unpaid family member caregivers in the United States varies, but that “nearly one out of every four U.S. households (23 percent or 22.4 million households) is involved in caregiving to persons aged 50 or over.
“Yet these caregivers often feel isolated and experience stress from the burden of caregiving itself and from balancing caregiving, work and other family responsibilities. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of older Americans, the Alliance was created to conduct research, develop national projects and increase public awareness of the issues of family caregiving,” the Alliance writes. They estimate the value of family member caregivers’ free services is nearly $200 billion annually.
A separate organization, The National Family Caregivers Association (NFCA), which is also dedicated to helping family caregivers, showed in a survey of its membership that 48 percent cared for spouses, 24 percent for parents and 19 percent for children. NFCA shows that 85 percent of all home care is provided by family and friends.
Nonetheless, paid providers give family member caregivers time off from constant care situations, as is the case with Saraland resident Edna Jones, 87, who is the primary family member caregiver to her husband, John Jones, who will be 90 at the end of October.
Love for her husband and faith in God keeps her dedicated to caring for his needs, but she receives breaks from caregiving through trained volunteers and paid medical personnel provided through Mobile Infirmary Hospice Care of Mobile (IHC), a full-service home medical business that is part of Infirmary Health Systems (IHS).
“By the time I get up and feed him, wash up my dishes, get my bath and fix a little lunch, I’ve give out; I’m no spring chicken — I’m 87,” she said.
The relief care is welcomed by this family, which also has a bedridden adult daughter, she said.
Earlier in their lives, the Joneses lived in Conecuh County, where Jones helped build Castleberry Baptist Church. In Saraland they attend church when they’re able, most often at Shiloh Baptist Church.
The Joneses seem to have positive attitudes about their situation, but family member caregivers often become anxious, depressed and stressed; some report physical problems associated with these difficulties.
The church has an unprecedented opportunity to step into the mix of providing relief, but ministries to relieve caregivers are sparse among Alabama churches, according to George Myers, director of constituent development with Volunteers of America (VOA) Southeast. The VOA Southeast serves much of Alabama and part of Mississippi and Georgia. It is a faith-based organization working with denominations, including Baptists, in its ecumenical approach to providing volunteers to help people in various communities.
“It’s just not a wide-scale concept,” he said. “I’ve known of some churches doing respite care to caregivers but it’s been sort of here and there. It’s just not high profile.”
Some VOA affiliates in the U.S. have caregiver ministries, but VOA Southeast has no ministry to caregivers at this time. It is being developed, however.
“One of my assignments has been to develop with other care-based groups some ministries (to caregivers). I’ve been talking with pastors about doing this,” Myers said.
The Mobile VOA office works through 14 broad-based programs to provide human services to the disabled, mentally ill and children.
Churches, working cooperatively through health agencies which are equipped to give medical and emotional support to caregivers, can be a way for ministry to caregivers.
Relief for caregivers can come through personal care assistants (PCA) who work through reputable for-profit health care businesses such as Infirmary Home Medical Services, (IHMS) for an hourly rate or through trained volunteers.
“We have volunteers who can provide respite care there in the home for the caregiver, so they can go the beauty shop, if they need to, or the grocery store, because they’re pretty much at home at all times, unable to leave,” said Sylvia Nelson, director of private duty nursing at IHMS.
“For a lot of our clients, the families have moved away and the person has no one here. That’s where the church can really play a part in visiting and just being there for the person in need of care,” Nelson said.
Family caregivers can face heightened stress when their loved one’s diagnosis is death. This is where a hospice agency can step in to offer emotional strength and medical services.
By definition, a caregiver in this situation is caring for a patient who is expected by medical professionals to live no more than six months, according to Debbie Davis, nurse manager of IHC and a member of Cottage Hill Baptist Church, Mobile.
She said hospice offers family member caregivers relief by sending out trained volunteers. In most cases, the volunteer is just one member of a team of individuals, the rest of whom are employed by hospice. The other team members — RNs, case managers and social workers — are necessary for patient medical care, but also through their outlook, personalities and encouraging words, can give more than medicine.
Hospice runs the gamut from giving a practical hand to an emotional hand to reach into the heart and soul of matters of family and loss.
“Whereas the nurse does symptom management and takes care of the pain, my job is to take care for the emotional pain,” said Wendi Skelton, an IHC social worker.
Ms. Skelton, a Methodist, said that spiritual families usually cope better with difficult times brought about by illness.
“I often ask families what helps them cope (when caring for a dying relative) and many will voluntarily tell me, ‘my faith is my strength.’”
“I have found from doing this type of work that families who are very spiritual and rely on God tend to cope better because they feel like there’s a purpose in everything that’s happening. When they focus on whatever type faith it is, or whatever higher power they believe in, they tend to cope better than if they don’t have that focus,” she said.
Benevolence to caregivers and their patients is not always an in-home situation; oftentimes the patient is in a nursing home or a hospital.
Taylor Morgan, Mobile Infirmary Medical Center chaplain, and a member of First Baptist Church, Mobile, said many families find themselves in caregiving roles at the bedside of a loved one who is hospitalized for a lengthy stay.
“You can’t fix it, but you can be a comfort to them,” Morgan said.
“As a chaplain we visit those patients who do want to see us. Our role is not to persuade them of our religious beliefs, but to try to draw out from them what their thoughts are spiritually and discuss those with them,” he said.
Volunteers to give caregivers relief are needed by many different agencies in Alabama, as long they meet certain requirements.
“The minimum age for what we call direct patient care is 18,” said Sharon Robertson, director of IHC in Mobile.
“Volunteers are treated just as if they were employees — they go through the same screening process that we do, with background checks, orientation, name badges,” she said.
Some churches have established their own caregiver relief programs, but careful training and cooperation from medical professionals in the community is advised.
The NFCA publishes a list of practical ways that churches can emphasize caring for caregivers. Go to their Web site at www.nfcacares.org and look for “A Guide for Congregations and Parishes” under “News and formation.”
Churches offer respite care for parents
Churches organize many worthwhile ministries, but they rarely organize to meet the needs of caregivers. This is a relatively new concept for most churches, including Baptists.
“It just hasn’t dawned on them that this need exists,” said David Freeman, pastor of Weatherly Heights Baptist Church, Huntsville, which has a ministry to caregivers of special needs children. This ministry is known as Care for Caregivers (CFC).
According to Freeman, few Baptist churches in Alabama have respite care ministries for caregivers. Weatherly Heights is the only church of any denomination in Huntsville with this type of ministry, although a few others are considering it.
Freeman began CFC last year when he arrived as the pastor. Seventy volunteers from the church are now trained to implement this ministry. They rotate as teams to give respite care to caregivers who bring their special needs children to the church for care from 6–10 p.m. on the first Friday of each month. The special needs children and their able siblings are brought to the church and a team of these trained volunteers take care of them.
“I hope this will truly provide a respite — a time of relief and release — to the parents of children with special needs,” Freeman said.
This gives caregivers, who are usually the parents of children with special needs or disabilities, a Friday night off from what is oftentimes constant-care situations.
“From 6 p.m. until 10 p.m. these caregivers are free to do whatever they wish,” Freeman said.
He hopes to see an ecumenical approach that would allow several churches in any given community to bear the responsibility of, say one Friday night a month. If four or five churches each did a Friday night, caregivers could have an entire month of Friday nights off, knowing that their loved ones were receiving quality care.
Ultimately, the church plans to expand the ministry to include caregivers who care for adults who have Alzheimer’s disease or are disabled due to other illnesses or accidents.
Among the 20 or so special needs children who currently attend on these Fridays are children with several disabilities.
“We have a variety of disabilities that are represented — intractable seizures, undiagnosed retardation, Down Syndrome, Cerebral Palsy — from the mildly affected to the profoundly affected,” Freeman said.
The few Baptist churches in Alabama that have specific ministries to caregivers usually have a close-to-home reason. Freeman, for instance, who first began a church caregivers ministry eight years ago when he was pastor of First Baptist Church, Indian Springs, in Birmingham, has motivation in his family.
“I have a daughter, Hannah, with a disability; she is 9 now and her condition has pretty much helped me find my niche in ministry,” he said. “I think that is most often the case. The congregations that do this typically have a leader who is personally affected,” Freeman said.
The ministry Freeman left at Indian Springs also continues to reach the community even though he has moved to Huntsville.
Carol Hill, a member of Indian Springs, said respite care is offered the third Friday of every month from 6–10 p.m. Currently they are offering the care for children and youth and their siblings.
Hill, who has an 18-year-old daughter with cerebral palsy, said it was the special needs Sunday School class that attracted her and her husband to Indian Springs. Now the Hills are one of the group leaders for the respite care teams. Four groups rotate each month so that each group works only three times a year.
Knowing first hand the exhaustion that comes with raising a special needs child, Hill said the program offers parents an opportunity to re-energize and just “do what they want to do.”
Noting that two other area churches have similar ministries on the first and second Friday nights, Hill hopes the ministry catches on in other churches. “It is something that can grow,” she said. “There are more that we can reach.
“And it doesn’t have to be limited to children nor does it have to be limited to Friday nights,” she added.
Freeman said, “Any caring congregation can do respite care. You don’t have to be a large church or have children with special needs in your church. They’re in your community whether you see them or not. When you make respite care available, you’re suddenly seeing them.”
He explained that having special needs children often keeps parents from coming to church, since churches usually aren’t prepared to offer care for these children.
“These families face a lot of isolation and since churches don’t accommodate their children, they don’t go to church.
“I hope it (this ministry) will open a door for families who are rearing a child with special needs to become in involved in the faith community and that the faith community will see people’s abilities first and their disabilities second,” he said.
Banks Corl, minister of education at Shades Mountain Baptist Church, Vestavia Hills, said Special Needs Family Ministry is the vision of a church member who saw a need for helping families with relatives dealing with mental or physical disabilities.
Corl said one of the ministry’s goals is not only to give family members a break, but also keep them involved with church activities.
“What is difficult for many of those families, is to get to church,” he said, echoing Freeman’s comments. “It’s difficult for many of those families to get to church. And when you do get to there, what do you do? If there’s not a trained person in the Sunday School class, then someone has to go in with that person.
“For many families, it’s very exhausting to try to get a (handicapped) child ready,” Corl said. “So what happens, a lot of times the families will not even be in church, even though their heart is there.” Corl said families also need a break from children with severe limitations.
“What better time than worship time or Bible study time to say someone else is willing to be with your child,” Corl said.
Freeman said that since it is important the church provide a very high quality of care, before anyone works with the children, the volunteers are carefully trained. Among the trainers are a public school educator of children with special needs, a registered nurse who specializes in special needs children and an experienced parent of a child with special needs.
Weatherly Heights kicked off its program on a Disability Awareness Sunday last year by working with community services and government. The mayor of Huntsville and others whose decisions or medical professions impact special needs children helped with the service.
Last summer gave the teams of Weatherly Heights volunteers the chance to have one turn or more at actually doing this ministry. With that experience and confidence gained, the numbers of special needs children they can care for can increase, to open the doors of respite care to more caregivers.
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