Former First Lady Rosalynn Carter relates to caregivers & people who have been affected by cancer.

Former First Lady Rosalynn Carter has said that caregiving is a blessing and a challenging task, a privilege and an often overwhelming obligation. As president of the board of directors of the Rosalynn Carter Institute for Caregiving, Carter is an active advocate and is involved in numerous awareness and education efforts to support caregivers and their families.

Located in Americus, Georgia, the Rosalynn Carter Institute for Caregiving works to establish local, state, national and international partnerships that help build long-term home- and community-based services. The organization’s primary goal is to support family and professional caregivers, a mission that is an outgrowth of Carter’s own experiences.

CAREGIVING AS A TEENAGER

“My interest in caregiving goes back to my childhood, when I witnessed how chronic illness affected and shaped my family,” Carter says. “When I was 12 years old, my father was diagnosed with leukemia, and died within a few months. It was extremely painful to watch him lose strength and begin to have trouble breathing as his illness progressed. I remember being afraid all the time—afraid of what was going to happen.”

Soon after her father’s death, Carter experienced an-other loss. Her grandmother died unexpectedly, prompting her grandfather to move in with her family. Carter’s mother cared for him for the next 25 years until his death at the age of 95, during which time he was bedridden for several years.

“He was totally dependent on her, me and other family members, as well as neighbors and friends, for all of his needs,” Carter recalls. “So I grew up in a caregiving household. In my tiny hometown of Plains, Georgia, it was expected that family members and neighbors would take on the responsibility of providing care whenever illness struck.”

Like many children watching a loved one deal with a devastating illness, Carter says that she felt partially responsible for her father’s suffering and remembers the guilt that accompanied the day-to-day care.

“I count it as a blessing that I was able to help him when he was sick,” she says. “It was one of the saddest times of my life, and I felt that maybe I had done something that caused him to suffer. On occasion, I had misbehaved and he had fussed at me—for my own good—but I had had bad thoughts about him. I wanted to do everything I could to make up and let him know how much I loved him.”

As a teenager, Carter brushed her father’s hair and read detective stories to him. She remembers taking her books into his room to studys unable to focus on the lessons. Her schoolwork suffered, but many years later, the experience helped Carter identify with other caregivers and prepared her for becoming a caregiver for her mother.

CAREGIVING AS AN ADULT

“My help for my mother when she became sick was different,” Carter says. “She developed an illness, was hospitalized and never came back home to live. In the meantime, I was traveling a lot with our Carter Center an assisted living home recently developed by a good friend, and I had a brother in town who was retired and went to see her every day. But … I was the eldest and a daughter, and she had always depended on me. I soon came to realize that she thought I should be there with her all the time.”

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Many caregivers struggle with time management and the challenge of juggling multiple roles in their professional and personal lives. Carter did too, and once again felt a self-imposed guilt familiar to many caregivers. “I called her every day when I was away, went to see her as soon as I got back and daily spent time with her when I was at home,” she says. “It was hard sometimes, but I did the best I could, always feeling guilty, which I now know is normal for all caregivers. Those times I had with her in the last year or so of her life were special and a blessing to me, recalling days past and even laughing together and maybe crying a little on occasion.”

Carter’s experiences eventually inspired her to write Helping Yourself Help Others: A Book for Caregivers, a resource she describes as a “roadmap” for those new to the role. After she began working with the Rosalynn Carter Institute for Caregiving, Carter explains that her perception of caregivers expanded, underscoring the need for support services. “The most important discovery I’ve made is to realize that there are only four kinds of people in this world—those who have been caregiv-ers, those who currently are caregivers, those who will be caregivers and those who will need caregivers,” Carter says. “I was very fortunate to be well informed to help my mother and wish I’d known as much when Jimmy and nal illnesses of his parents and siblings.”

CAREGIVING AS A SPOUSE

When President Carter was diagnosed with melanoma that had metastasized to his brain last year, the Carters experienced a different form of caregiving. Rosalynn Carter says that the family had the same type of reaction to the cancer diagnosis as most people, adding that the support following the announcement brought great comfort to the couple during a trying time.

“We felt shock, fear, despair and sorrow,” she says of the period following the diagnosis. “We prayed. Our faith was and continues to be the source of strength for both Jimmy and me. We know that God will always be there with us whatever comes.

“Our family is a large one, and everyone came together,” Carter continues. “Also, we received a huge outpouring of love and support from across the nation and the world. There has not been a day since Jimmy’s diagnosis that we haven’t received prayers and encouragement through calls, letters and emails.”

carter2ADVOCACY THROUGH ACTION

Despite her personal experiences as a caregiver, Carter says that she didn’t recognize the full scope of the role until she began working with the Institute. Although the caregivers providing “day-in/day-out” nursing care of a sick or elderly person are considered by many to represent the definition of the role, Carter says there are many others who have not identified as caregivers yet.

“People who are responsible for a loved one, even though they’re not living together, are also caregivers,” she says. “They still help out and check in, and they’re always thinking about the loved one who is ill. While my mother did not live with me, I worried about her constantly. And she wanted me to be with her. I felt guilty because I traveled so much and couldn’t always be there.”

Leisa Easom, PhD, is the executive director for the Rosalynn Carter Institute for Caregiving. She says that one of the key goals for the Institute is to foster collaboration and increase awareness of the growing numbers of caregivers and their multifaceted support needs.

“Organizations can do very little if they operate in isolation,” Dr. Easom says. “Caregiving is a global issue and one that everyone will be concerned about at some point in their lives. It is not a role most people typically prepare for, but we need to think about the changing demographics of the nation and of the growing need to offer support services to caregivers.” By 2030, 20 percent of the US population will be over the age of 65, Dr. Easom says. Dementia and other age-related conditions will become a greater health crisis as the nation ages, necessitating a comprehensive strategy. Says Dr. Easom, “Research shows that caregiver stress increases as diseases like dementia progress. We have to focus on creating sustainable sup-ports for caregivers.”

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CAREGIVING CONFERENCES & COACHING

The Institute hosts national conferences on caregiving issues. Two are scheduled for 2016: one in late July titled “Uniting Forces to Support Military Caregivers” and one in October titled “Solutions to Surviving Today’s Caregiving Journey.” According to Carter, the diversity of the conferences underscores the variety of solutions needed to support caregivers.

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“We recognize that the needs of a young wife caring for her injured husband returningan be markedly different than an elderly couple where one spouse has Alzheimer’s,” Carter says. “We offer basic training for family and professional caregivers and then go beyond to focus on the unique issues of caring for wounded warriors or those with dementia. In rural areas, we even offer coaching by phone.”

Carter has advocated at national levels via testimony before the US Senate calling for more support for caregivers. The Rosalynn Carter Institute partners with the Administration for Community Living, Johnson & Johnson, Easter Seals and Bristol Myers Squibb, among others, to offer educational training, webinars and implement translational research on programs following successful clinical trials supporting caregivers and their families.

“We are also the only caregiving institution that is located on a university campus, Georgia Southwestern State University—my alma mater,” Carter says. “We provide counseling and other services to the faculty and staff of the university and also to the public in the surrounding area.”

WHO IS A CAREGIVER?
REDEFINING THE ROLES OF CAREGIVING, FINDING THE SUPPORT CAREGIVERS NEED

At the heart of the Institute’s mission is a commitment to caregivers in all situations and capacities, Carter says. Often caregivers don’t recognize the impact of their roles, nor the fact that support is available.

carter7“Family caregivers are the backbone of our country’s long-term home- and community-based health care system,” she says. “The approximately 40 million caregivers in the United States provide $470 billion worth of unpaid services each year. And many are struggling emotionally, physically and financially.

“A caregiver is anyone who provides care for chronically ill or disabled relatives or friends,” Carter explains. “They provide services such as grocery shopping, financial management, errands, housework, transportation, administration of medications including giving shots, changing dressings and giving food through feeding tubes. They might also provide personal care such as assistance with bathing, shaving and toileting, and counseling, emotional support and helping their loved one deal with physical and emotional pain. They may care for a loved one who is relatively independent, but who needs a daily compassionate phone call, one who is housebound or one who is totally bedridden.”

The multidimensional role of caregiving can present a challenge in reaching people who could t from support services. Carter would like to see a national awareness campaign in place that recognizes the caregiver role and its value to individuals, families and society as a whole.

“People seek help in areas that they believe relate to them and their situations,” Carter says. “Caregivers are no different. Those who don’t identify as caregivers won’t access programs that are available to assist them.” {PP}