Every cancer diagnosis begins a profound journey that affects not only the cancer survivor, but also the loved ones who accept responsibility for providing care during their often harrowing treatment and recovery. Very few are prepared for the rigors and challenges that await them. Yet caregivers’ needs are frequently overlooked in the race to address the medical and psychosocial support factors that improve patient outcomes. Now, thanks to The Wellness Community - Arizona (TWC) and Cancer Treatment Centers of America® (CTCA) in Goodyear, all that’s about to change.
“Caregivers are the unsung heroes of cancer treatment,” said Paula Hardison, TWC Executive Director. “They take on enormous responsibility along with the physical challenges, extreme stress and fearful uncertainty that goes with a cancer diagnosis. This can take a serious toll on their health and sense of well-being. National Cancer Survivor Day is an opportunity not only to celebrate survivorship but also to shine a spotlight on the critical role caregivers play as a survivor’s dedicated partner in treatment.”
In Arizona alone, nearly 550,000 caregivers collectively devote about 585 million hours per year to caring for a loved one, providing services valued at more than $5.8B annually. Overall, Arizona ranks 20th nationwide in the number of caregivers and the hours they devote to giving care. Yet, despite their economic and social contributions, caregivers’ challenges are rarely acknowledged. Consider this:
• Nearly a third of American households report that at least one person has served as an unpaid caregiver in the past year.
• Most caregivers (86 percent) are related to the care recipient. The majority of family caregivers are women (66 percent).
• Family caregivers undergoing extreme stress age prematurely, shortening their lives by as much as 10 years.
• A wife's hospitalization increases her husband's chances of dying within a month by 35 percent. A husband's hospitalization boosts his wife's mortality risk by 44 percent.
• 40 to 70 percent of family caregivers show clinically significant symptoms of depression. One quarter to one half of these meet the diagnostic criteria for major depression.
Cancer caregivers like Bonnie Bauer of Phoenix, Jerry Feuer of Scottsdale and Nancy Neal of Buckeye shared their stories. All three—together with their spouses—will be attending TWC’s National Cancer Day Survivor Day Celebration on June 5, which is sponsored by CTCA in Goodyear. At the event, TWC Executive Director Paula Hardison will be on hand to discuss how caregiver support programs are becoming an essential component of a comprehensive cancer treatment and recovery strategy.
Caregiver Bonnie Bauer and her husband Jerry
In 2006, Bonnie Bauer and her husband Jerry had just begun to enjoy their golden years together when Jerry was diagnosed with esophageal cancer; a relatively rare form that is usually deadly. “I had been a benefits administrator for twenty years,” said Bonnie. “I knew many employees who had to contend with cancer, either directly or as a caregiver. But it’s different when it hits you personally. Jerry’s diagnosis came as a total shock. We’d both just retired and were looking forward to traveling. Now, all of a sudden, we were looking at a major surgical procedure.”
Thankfully, Jerry’s prognosis was more positive because his cancer had been detected at a relatively early stage. During surgery, however, doctors discovered cancer in several of Jerry’s lymph nodes. He subsequently underwent a successful six-month program of chemo and radiation therapies.
“I’m a stoic person, so I felt I had to be strong for Jerry and not show how frightened I was,” she said. “When a couple faces a diagnosis like this, it creates a void in your relationship. There are some things you simply can’t say to each other.”
Bonnie and Jerry joined support groups at TWC, where they were able to express their feelings openly and find new ways to cope. “The side effects of chemo and radiation are the same for everyone,” she says. “People share tips and relate their experiences. When I heard what other caregivers were going through, I realized how lucky I was that Jerry was so strong and positive throughout this difficult period. I felt so grateful to be among people who understood and could empathize with us during this difficult time. The support groups were a huge source of comfort and relief for both of us.”
Jerry’s upbeat attitude and refusal to be beaten by his cancer were a source of inspiration for his fellow support group members as well as for Bonnie. “Jerry made up his mind from the outset that he was going to survive and that cancer would not be a big ordeal for us. He enjoys photography, so he focused on that between treatments. I stayed active too, tutoring a computer class and socializing at the senior center.”
Today, Jerry is cancer-free and the couple is enjoying their life together. “We’re still very committed to TWC as volunteers and members of TWC’s 360 alumni group,” she said. “Jerry also spends three days a week at TWC doing outreach work. He meets with survivors and caregivers who are embarking on the same journey we made. It’s his way of offering thanks for the compassion and support we both found at TWC.”
Caregiver Jerry Feuer and his wife Barbara
In 2005, Jerry and Barbara Feuer were devastated when doctors diagnosed the nearly four-centimeter lump in her breast as cancerous. “We didn’t know anything about the disease, what Barbara’s treatment options might be or her outlook for the future. It was like getting hit over the head with a hammer. We were completely stunned,” he said.
Jerry and Barbara reached out to The Wellness Community-Arizona for support and guidance in navigating the health care system. Barbara joined a participant’s group, where she found the emotional support and knowledge she needed to play an active role in selecting and securing treatment. After considering her options, Barbara decided to have a mastectomy and a course of chemotherapy.
In turn, Jerry joined a caregivers' support group. “It’s hard for family and friends to relate to what you’re going through when you live with someone who has cancer. But in the support group, we’re all experiencing the same things. The first time I went, I had no idea what to expect. I was worried it might be a sterile, clinical environment. Instead, it was like a home, very comfortable and comforting. I wound up crying like a baby at the warmth and understanding I found there.”
Like so many others, the couple found their cancer journey to be incredibly stressful and frightening. “We both experienced the same worry, concern, fear—and eventually—relief when Barbara’s treatment was successful. We refer to ourselves now as ‘co-survivors.’ I truly believe TWC helped save our sanity.”
Today, Barbara continues to be cancer-free and the couple remains actively involved in serving others. Both are members of TWC’s alumni group, TWC360, and also volunteer their time by assisting with programs, answering phones and speaking at community events. “We stay involved because of how much TWC means to us and to so many others. They are truly a wonder,” said Jerry.
Caregiver Nancy Neal and her husband Bill
In February 2005, Bill Neal was two weeks into his retirement when doctors at CTCA told him his persistent cough was actually Stage 3B lung cancer, with 17 of the 21 lymph nodes in his chest also affected.
“When Bill was diagnosed, we had already built a retirement home on an island off South Carolina,” said his wife Nancy. “I’d moved there while Bill stayed home in Milwaukee to sell our condo. When I found out, I returned home so I could care for Bill during his surgery and treatment.”
Surgeons removed the cancerous lymph nodes and one of Bill’s lungs. But the prognosis was not encouraging. “We were told he had a twenty-five percent chance of being alive in five years,” she said.
In 2006, Bill was in remission and felt well enough for the couple to complete their move to South Carolina. Then, in 2007, the cancer returned, this time to his brain. Bill underwent gamma knife surgery to remove the tumors. Two years later, doctors found cancer in his lung, leading to another round of gamma knife surgery. “Bill was incredible throughout this whole ordeal,” says Nancy. “I call him my energizer bunny; he just keeps going.”
In 2009, the couple relocated to Arizona so that Bill could continue being treated by his doctor, who had moved here to become Chief of Staff at CTCA’s new facility in Goodyear. This past February, Bill met his five-year survival goal. “On May 21, we attended Cancer Treatment Center of America’s Celebration of Life event, which honors five-year survivors like Bill,” she said.
Nancy attributes Bill’s survival to the comprehensive approach to support and treatment they found at CTCA. “We’re incredibly grateful to the doctors for saving Bill’s life.” Nancy said. “But it’s not just the quality of medical care they offer that made the difference. Everyone we met was so professional and compassionate. You feel hope when people genuinely care about you and understand what you’re going through. That’s what both of us found at CTCA.”
As a former hospice nurse, Nancy was well-prepared to care for Bill as he contended with the rigors of cancer treatment. “I thank God and my parents that they had the wisdom to encourage me to pursue this field,” she said. “It gave me the confidence and skills I needed to care for my husband and be his advocate. My heart goes out to caregivers who have to learn how to change dressings or operate medical equipment while also taking care of themselves and their loved ones. Caregivers need a support system around them just like patients do. CTCA provides that and so much more.”