TRE SHELLY and TRISHIA SHELLY-STEPHENS (pictured with her husband, MICHAEL STEPHENS, right) share a rare inherited syndrome that increases cancer risk. - PHOTO BY KIMBERLY TESKE FETROW/ KIM FETROW PHOTOGRAPHY
Tre Shelly was only 2 years old when he was diagnosed with rhabdomyosarcoma. His mother, Trishia Shelly-Stephens, was terrified – but perhaps even more so when she learned that the specter of cancer might never completely disappear from their lives.
In 2008, 13 years after Tre had been diagnosed, Shelly-Stephens had breast cancer, and another relative had developed cancer, too. Suspicious, Shelly-Stephens sought genetic testing for herself and her son. Soon, the life-changing results were in: The two were diagnosed with Li-Fraumeni syndrome, a rare, inherited genetic disorder that greatly increases the risk of many types of cancer.
After initial treatment, Tre remained cancer-free for 19 years. But in December of 2013, he found a second sarcoma, and then a third nine months after that.
The emotional toll that took on Shelly-Stephens, as well as her frequent need to travel back and forth with her son to a hospital in Portland more than three hours from her home, have begun to affect her. For instance, she has gained weight from chronic fatigue and eating meals out all the time, and is now seeking professional help for her anxiety, depression and chronic stress.
Shelly-Stephens has a flexible employer who gave her the time off she needed. Still, she has faced financial hardships — not just because of medical bills, but due to leaves from work, hotel bills, gas and meals away from home. While the mother and son are fortunate enough to have a community that raised funds for them, they know not everyone is as lucky.
“Cancer can be very life-consuming,” says Shelly-Stephens, who is now helping other patients and their caregivers by serving as vice president of an advocacy group, Living LFS. “To try to continue to have a semblance of a normal life takes a lot of work and effort and energy, which I do because I feel like that is the example that I need to portray for Tre.”
The challenges that are part of everyday life for Shelly-Stephens are undoubtedly familiar to people who care for loved ones with all sorts of illnesses and disabilities. But caregivers to loved ones who have cancer — usually parents, spouses or siblings — may not be surprised to learn that they have a particularly difficult row to hoe.
A recent report by the National Alliance for Caregiving, conducted in partnership with the National Cancer Institute and the patient advocacy group Cancer Support Community, found that caregivers to patients with cancer, on average, shoulder a higher burden of stress and responsibilities than caregivers of patients with other diseases. The report, based on surveys of 1,164 non-cancer caregivers and 111 cancer caregivers, compiles cancer-specific data from the Caregiving in the U.S. study, a joint project of the National Alliance for Caregiving and AARP Policy Institute. Titled “Cancer Caregiving in the U.S. — An Intense, Episodic, and Challenging Care Experience,” the report can be read in full at caregiving.org/cancer.
A DIFFICULT ROW
According to the report, caregivers of patients with cancer perform their caregiving role for a shorter amount of time compared with their counterparts (1.9 years versus 4.1 years). Additionally, more cancer caregivers have others helping them: 31 percent report they are the sole caregiver compared with 48 percent of non-cancer caregivers.
Although the role of a cancer caregiver appears more manageable in these respects, the level of care required for patients with cancer is often more intense than that for patients with other diseases. Cancer caregivers on average dedicate 32.9 hours per week to caregiving tasks whereas for non-cancer caregivers, it’s approximately 23.9 hours. One-third of cancer caregivers devote more than 41 hours per week to caring for their loved one, the equivalent of a full-time job.
“When we look at the experience of cancer families compared to caregiving across the board, cancer caregiving tends to be much shorter in duration, but more intense and challenging,” says Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving.
There are several reasons for this cited in the report. For one thing, cancer caregivers perform more instrumental activities of daily living (shopping, paying bills, making and attending doctor’s appointments); activities of daily living (helping with trips to the bathroom, giving medicine); and medical tasks (wound care) for their loved ones than do non-cancer caregivers.
Specifically, cancer caregiving often involves assisting the patient or survivor with personal care activities including bathing, dressing and feeding. Seventy-two percent of caregivers also perform medical and nursing tasks, such as injections, tube feedings and catheter or colostomy care, compared with 56 percent of non-cancer caregivers. Seventy-six percent of cancer caregivers are responsible for monitoring the patient’s condition and adjusting care accordingly. Yet 43 percent of caregivers overall perform medical tasks without any training, the report found.
Looking after a patient with cancer can be more emotionally stressful than other types of caregiving, too. Fifty percent of cancer caregivers surveyed in the report said they felt “highly stressed,” while 37 percent of non-cancer caregivers found providing care to be emotionally stressful. Overall, four in 10 caregivers reported that they needed help managing emotional and physical stress.
Yet, the report suggested that “there are very few assessments of the caregiver’s needs” or efforts to specifically support them, Hunt says.
“Once the cancer is introduced into the family system, whatever balance they had (is disturbed). It creates confusion and chaos,” says Bill Goeren, licensed clinical social worker and director of clinical programs at the national nonprofit organization CancerCare
. “This system is a constant balancing act, (causing caregivers to wonder,) ‘Which ball is in the air at this time, and which is the priority?’ Sadly, for caregivers, the first ball that falls is their self-care.”
Finally, the survey found that cancer can place a big financial burden on caregivers.
On average, 63 percent of cancer caregivers report having to make accommodations in the workplace due to their caregiving role. These include coming in late, leaving early, or taking time off to provide care (48 percent); going from full- to part-time work or cutting back hours (24 percent); or taking a leave of absence (19 percent).
Treatment for all illnesses can be expensive, but this dilemma is especially prevalent among patients with cancer, Hunt adds.
“Families can go bankrupt trying to deal with all of the expenses that may come with cancer treatment,” she says, with the caregiver often feeling the need to leave work in order to take care of their loved one. “That’s something that has huge repercussions financially,” she says, not just in the near-term — for example, loss of salary — but in the future, as caregivers experience reductions in pension and social security benefits they would otherwise have relied upon when they retired.
A CALL FOR ACTION
Cancer caregivers also face a tough journey because, on top of taking on so many new tasks, they must face their “new normal” while worrying about the ultimate outcome of their loved one’s cancer.
In fact, both cancer caregivers and non-cancer caregivers would like more help and information regarding how to manage their own emotional and physical stress, make end-of-life decisions and keep the care recipient safe at home, the report states.
For cancer caregivers, in particular — whose charges are much more likely to have been recently hospitalized — some of that stress revolves around the fear they may experience when performing the kinds of medical tasks that are typically done by doctors or nurses. Caregivers may wonder if they’re doing procedures properly, or are instead making dangerous mistakes.
According to the report, the medical community could help ease this aspect of the caregiver burden by providing more training to caregivers before sending patients home.
“I had to do home IVs, injections, ostomy bag changes and manage a large assortment of medications, none of which I had training in until a home nurse came and taught me,” says Stacey Runfola, who cared for her husband until his death about two and a half years ago from an adenocarcinoma of unknown primary origin. “Even without a medical background, my husband and I were able to do it, but you have to know yourself and, if you’re struggling, say ‘I need help.’”
To build on what the nurse taught her, Runfola says she began doing her own research every night and using online forums to read articles and ask other caregivers questions. She says this helped her go to doctors’ appointments prepared with solid questions to ask.
In its report, the National Alliance for Caregivers calls on the medical community to do more for caregivers and their families. Proposed changes include providing training materials to assist caregivers with performing activities of daily living, instrumental activities of daily living and various medical tasks;training health care professionals to involve patients and their caregivers in shared decision making; developing an assessment to determine the needs/distress levels of caregivers; and referring caregivers to different support resources to help with their emotional stress. The report also looks at ways in which researchers and medical community members can offer that support to cancer caregivers. These include developing and testing new mobile technologies; identifying and developing respite and other evidence-based supports for caregivers that would reduce stress; and utilizing and expanding community-based solutions.
On the financial side of things, possibilities could include identifying public policy solutions such as Social Security credits for caregiving and tax credits for financial expenditures related to caregiving, as the impact of cancer caregiving on work may have implications for the caregivers’ career and ability to save for retirement; and collaborating with employers to increase the availability of strategies to enhance work flexibility, including paid family and medical leave, telework and other flexible leave programs to support caregivers.
Already working to help people who care for family members with advanced cancer is Nick Dionne-Odom, a Ph.D.-prepared nurse and postdoctoral fellow at the University of Alabama at Birmingham School of Nursing. His 10 years as an intensive care unit (ICU) nurse and five years in community-based palliative care helped him hatch an idea that he’s working to get off the ground.
Dionne-Odom is developing a palliative care health coaching program funded by the National Institute of Nursing Research (a division of the U.S. National Institutes of Health). His aim is to help caregivers of people with advanced cancer to set goals that will improve both their skills as caregivers and their own health.
“It’s a marathon, not a sprint,” says Dionne-Odom. “In order to give good, high-quality, loving care to this person, you need to take care of yourself.”
The coaching program will comprehensively assess caregivers when the person they care for is newly diagnosed with incurable cancer. By doing this, Dionne-Odom hopes to tailor a program to each specific caregiver based on their individual needs. That could include plans that enable caregivers to monitor symptoms, get exercise or have more time for social activity.
“The reason we try to coach them early in the process is to prepare them — not for a specific problem that’s happening now, but for things that may come up in the future,” says Dionne-Odom. “We do it early because people may have more ability at that time to learn and retain information about coping skills. If we try to intervene when caregivers are busy taking care of someone who is critically ill and in need of a lot of assistance, they really don’t have the capacity to learn as much information or develop coping skills.”
Some hospitals are already successfully preparing caregivers to look after patients.
MIKE PODOLAN appreciated the good training he got from his local hospital before he went home to take care of his girlfriend, SANDI STUPICA, after she underwent a cancer treatment procedure. - PHOTO BY RACHEL LIU
Mike Podolan sees it happening at the University of Michigan Comprehensive Cancer Center, where his girlfriend, for whom he is a caregiver, was treated for colorectal cancer.
“The training we got for her colostomy care before she had her reversal surgery was great,” says Podolan. “We had home care nurses coming in and helping us with it, teaching us. They taught us at the hospital, as well.”
Podolan’s girlfriend was recently given a clean bill of health at her six-month check-up, but will continue to get checked for several years to come. She is now working to bring awareness about colorectal cancer to her community, as well as to help the newly diagnosed understand what they will face, and how to do so effectively.
“Talk to the hospital, because they have support groups for both patients and caregivers,” Podolan says. “There are people going through it, or who have known someone that has gone through it, so as much as you may feel like you’re alone, you’re definitely not.”
With or without help from the medical community, looking for the support around them is one important step caregivers can take toward making their experience manageable.
For a start, Shelly-Stephens suggests, caregivers must learn to accept help from family and friends who offer it. That can mean anything from making a meal to picking up a child from school.
In addition to family and friends, caregivers can turn to organizations like Imerman Angels or to resources that offer respite care, which allows someone else to temporarily care for a patient while the caregiver takes a break. Respite care can occur in the patient’s home, with relatives or friends acting as caregivers, or can be a paid service such as adult daycare or a group that takes a loved one in for a few days so a caregiver can get chores done, attend a remote work assignment or take a weekend vacation. Some suggestions about how to find respite care are listed here: helpguide.org/articles/caregiving/respite-care.htm.
Imerman Angels assigns a buddy to an individual caregiver. The buddy will be either a current caregiver or someone who has gone through a similar situation before.
Online resources also exist that can help to spread the workload in an organized manner, such as CaringBridge.org, LotsaHelpingHands.com and TakeThemAMeal.com
CaringBridge allows caregivers to create their own websites where they can update family and friends on a patient’s condition, while also allowing loved ones a place to leave a message of support and love. This saves caregivers the effort of having to give updates to people individually.
A “Help Calendar” can be made on the Lotsa Helping Hands website. This is an outlet where a caregiver can post requests for rides to medical appointments, help with child care, meal delivery or friendly visits. Anyone who wants to help can sign up for a specific task, which will be marked off on the calendar. Lotsa Helping Hands will also send reminders to those who have offered to help.
TakeThemAMeal.com focuses solely on making sure these families have nutritious meals within arm’s reach. The site gives relatives, friends, co-workers or religious communities a chance to make meals for a family and schedule their delivery. Also through the site, people can buy meals online and have them delivered to the families they want to help. There are a variety of meals that can be ordered online and shipped, even to places outside of the United States.
In addition to physical help, caregivers should know there is emotional support available. This can be found through groups like The American Cancer Society, National Alliance for Caregiving and CancerCare
. They offer reading materials, self-assessments that test caregivers’ emotional and physical well-being, support groups and online forums for connecting with other caregivers.
“You don’t have to be strong when you’re in a support group where people get it,” says Shelly-Stephens. “My family is amazing, and my community — we have so much support — but if they haven’t been there, sometimes you feel like you have to be strong for them. You can’t just let all your fears out, because you don’t want to freak them out. In a support group, you can do that. It gives you that freedom and permission to be as vulnerable as you need, and express all the fears you maybe don’t want to say to your friends and loved ones.”
Clincial social workers, like Goeren, suggest that caregivers take the time to step away for one to two hours a day to clear their minds.
“Are they getting enough to eat, enough sleep? Are they able to take momentary breaks?” Goeren asks. “Are they able to put issues aside for a moment? Do they have time for themselves? Are they able to step out and be with a friend? Are they ignoring their own medical appointments? Are they listening to their bodies?”
Taking that much-needed alone time can help to keep mental health in check as the stresses of caregiving pile up.