AMERICUS — Those living with the burden of caring for someone else have been able to find hope thanks to a former first lady through the Rosalynn Carter Institute for Caregiving.
The institute, nestled in the Rosalynn Carter Health and Human Sciences Complex at Georgia Southwestern State University, was founded nearly 30 years ago to provide resources to caregivers.
“It was founded in 1987 in honor of Rosalynn Carter and in recognition of all the efforts she has done,” said Leisa Easom, the institute’s executive director.
Carter did not want to duplicate what was already being offered at the Carter Center in Atlanta, so efforts were directed toward caregivers — many of whom are family members — of individuals who depend on someone else.
“We exist to create awareness,” Easom said.
One way is through a heavily requested booklet, “Ten Tips For Caregivers,” which is distributed free except for the cost of shipping.
Officials at the institute are often asked what the first tip is, which is, “Take Care of Yourself.”
“That is not a selfish thing, that is a selfless thing,” Easom said. “If you don’t take care of yourself, you can’t take care of them.”
The Georgia CARE-NET Coalition, a volunteer arm that exchanges resources related to caregiving, is another resource offered. There are 12 CARE-NETs throughout Georgia, nine of which Easom described as “extremely active.”
It meets in Macon four times a year to exchange ideas, most recently June.
“It is an important opportunity for education and advocacy at a community level,” Easom said.
“Caring for You, Caring for Me” is another way the institute provides outreach. It is a scripted caregiver support program with five modules taught over five weeks in a group setting. It comes with a book and a jumpdrive with a PowerPoint presentation already loaded including the materials needed for training.
For $50, Easom said, a program leader can purchase the book for training. After completing the training, they can move on to teach the materials to others.
MORE WITH LESS
Staff turnover at agencies that most often work with the aging population can be high, so with such agencies also having to do more with less in recent years, the idea is to provide continual training that can be affordable, Easom said.
“(A community) needs resources that are stable and evidence based,” she said.
The institute doesn’t go a day without being reached by someone in need of help. When contact is made, the staff’s job is to connect the caregiver to whatever resources it can. They also are open to conducting seminars at churches, as well as other venues, to help spread the word, the executive director said.
Easom’s background is geriatric nursing, making her well aware of how the baby-boomer population is bound to have an impact on the caregiver population, which is shrinking as the prior generation becomes more reliant on their children and grandchildren.
“People are living longer and want to age in place,” she said. “They want to stay at home.”
Those at the institute have found that those acting as caregivers do not actually recognize themselves as caregivers, but rather just family members who feel they are doing the responsible thing. Sometimes the first step is to get individuals to self-identify.
Someone who regularly checks on someone, provides transportation, makes meals or ensures doctor visits are made, Easom said, is a caregiver.
“They do qualify as a caregiver, and do qualify for these programs,” she said.
Caregivers of dementia patients are often thrown into the position without knowing what to do. Easom said she has been in contact with legislators who might be able to use their influence to help, such as finding ways to push through laws making sure caregivers are given specific instructions on how to care for their loved ones at home before leaving the hospital.
Gayle Alston, director of the institute’s Training Center for Excellence, is heavily devoted to educating caregivers of dementia patients. A guide for dementia caregivers — including sections on understanding of dementia, best practices and stress management — was recently expanded to make it user-friendly and comprehensive, and has since been taken throughout Georgia and given to trainers so they can pass them on to caregivers.
Divided into six sections and consisting of 34 chapters, it is meant to relate to the caregivers on a personal level.
“My personal goal is to get this guide in the hands of every caregiver,” she said.
Alston does not have trouble putting herself in the place of a caregiver. She was a caregiver for her mother, who suffered from dementia. In both her personal and professional life, she has found dementia to be a growing problem everywhere.
“Caregiving can be one of the most rewarding experiences in our lifetime,” Alston said. “We talk a lot about the challenges, because (the support is needed), but we don’t want to downplay the rewards they experience.
“The guide is meant to maximize the rewards and minimize the challenges.”
Among the rewards, Alston said, can be solidified — or even mended — relationships, a feeling of giving back to someone who has helped them and a sense of accomplishment.
“It is a labor of love,” she said. “People enjoy being needed and enjoy being able to give back.”
A common impact of caregiving is isolation, so people may feel like they are burdening others by reaching out for help.
“There is help out there,” Alston said. “People are more willing to step in and help if caregivers ask for it.”
Alston said she has trained more than 300 people throughout the state on the dementia guide, and is now going around to areas where she sees the need. In 2018, an attempt will be made to take the guide out nationally, she said.
To those who have utilized it, there is no other book like it. It has gained a reputation for being encouraging as well as presentable.
“As someone who cared for my mother, it is important for me to connect on that level,” Alston said.
Schieloh Wolfe, a caregiver coach with the institute’s Resources Enhancing Alzheimer’s Caregiver Health (REACH) program, is able to provide services to families in nine counties dealing with some form of dementia through a collaboration between the institute and Phoebe Sumter Medical Center.
In 12 sessions over six months, counseling is tailored to the specific needs of the caregiver to help them manage the stresses associated with their way of life.
“Our goal is to empower the caregiver to keep them home as long as possible and at the same time improving their quality of life,” Wolfe said.
A full-time coach, Wolfe has a 20-25 case load with a waiting list. He said it first started as a grassroots effort, and has grown from there.
“Stress is one of the primary focuses,” he said. “Dementia is not discriminatory. I work with caregivers who, from a financial standpoint, have it all (and they) face just as much challenges. Some are with zero means.”
One of the duties he might take on for a family, for instance, is talking to college admissions officers to ensure a caregiver’s child can get an education. That on its own can be a daunting task, considering the resources needed to care for someone with dementia.
An adult establishes a career, saves up and retires to find out his or her parent has dementia. From that point on, everything changes — and everything saved up earlier in life can easily disappear. Many folks have to make hard decisions about what to let go.
“It creates a very complex problem,” Wolfe said.
A caregiver coach’s job is to help the caregiver navigate the system and get families into a good place.
“It (can be) very frustrating for the caregiver and the coach, because sometimes you get stuck, but you get so close that you work together,” he said.
In a nutshell, a happy medium needs to be found. The medium is not going to be the same for everybody, because some caregivers are more experienced than others — and dementia impacts everyone differently.
Sometimes the place to start is a change in the patient’s social structure.
“You are limited only by your imagination,” Wolfe said.
NO GREATER HERO
A motivator is a potential cost savings, since even someone who is well off cannot fund institutionalized care for long. There is also less of a culture shock to the patient at home.
“The benefit of being home is that there is a sense of being familiar,” Wolfe said. “It is a win-win, but it is only a win-win if they have the resources.
“I don’t think there is a greater hero than a caregiver … When it is over, they have to pick up the pieces and figure out what is next.”
Wolfe said he notices a change in families when they complete the REACH program, and that it is all worth it at the moment it all comes together for a caregiver. The program is one that already has a wide reach, but it could be bigger, he said.
“It benefits everybody, especially the caregivers,” he said. “We know the program works, and know it is effective.”
It is difficult to ask for help, and the initial visit is an awkward one, but dementia is a disease that can be battled together, he said.
The Pope Fellowship and Scholarship at Georgia Southwestern has been a good way to reach out to the upcoming generation of leaders by training young minds on the hurdles associated with caregiving, and to somehow encourage them to incorporate that knowledge into their chosen field of study — whether it is a teacher passing the knowledge on to his or her students or a business owner providing more time to their employees to care for family members, Easom said.
In the future, Easom said she would like to see Skype and FaceTime utilized more so caregivers do not have to travel to get the resources they need, as well as growth in the CARE-NET program to other states.
“There are so many possibilities, but we have got to get the resources out their nationwide,” she said.
A quote from the former first lady, which greets those coming into the institute, sums up the impact caregiving has on communities: “There are only four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.”
On the institute’s calendar is its 29th annual national summit set for Oct. 21, which will have a broad overview of topics related to caregiving. It has a registration deadline of Oct. 7.
For information on the institute or its upcoming summit, visit rosalynncarter.org or call (229) 928-1234. Those interested in hosting, or seeking more information about, an educational workshop are also encouraged to contact the institute.