The recent story of Austin Fisher — a 17-year-old high school athlete from Carrollton, Ohio, who almost lost the opportunity to graduate with his high school class— pulled at the heart strings of people across the country.
During the school year, the teen drove his mother back and forth to medical appointments and took care of her when she was bedridden with an advanced stage of breast cancer. As a result he accumulated more than the allowed number of excused absences and was told he could not graduate.
In local reports Fisher said it’s just he and his mom at home, and he chose to put family first. More than 100,000 people signed a petition asking the school board to “Let Fish Walk” with his class, which the school ultimately decided to do.
The dilemma highlights an issue many patients and their caregivers face as they battle chronic diseases – access to resources. Rebecca Kirch, Director of Quality of Life and Survivorship for the American Cancer Society says part of the problem is that patients aren’t always informed of what resources exist.
“Unfortunately, this sort of thing happens all the time. While undergoing treatment, patients are often too sick to be home, but too well to be in the hospital. Caregivers are forced into a new, unrehearsed role helping their loved one handle the stress, symptoms and side effects of a serious illness and its treatment.”
“One of the missing links here is the use of palliative care – the extra layer of support patients need while undergoing disease treatment. Many hospitals have begun offering palliative care teams which are focused on improving quality of life for patients and families by addressing pain, emotional distress and caregiver burden. This is a key resource available that many people don’t even know to ask for.”
According to the guide “What It Takes to be a Caregiver,” over 50 percent of caregivers of patients getting chemotherapy spend more than eight hours a day caring for the patient. Today families provide about 80 percent of home-care services, and they’re filling roles that previously were executed by health professionals.
“Patients need to know to ask for help with these issues: Ask ‘can you give me a referral?’ or ‘can you help me with these quality of life issues that are an equally compelling problem?’” Kirch suggests. “We’re empowering patients to get the comfort they need so that we can save lives and reduce suffering.”
A cancer diagnosis is life changing, for both patients and their families. By calling the American Cancer Society National Cancer Information Center (NCIC), 1-800-227-2345, you can access resources you may not be aware of. For example, here’s list of free services that help cancer patients and their loved ones to manage during treatment and recovery.
• Patient Navigator: provides individualized help to cancer patients and caregivers, to include transportation, referrals, nutrition counseling and pointing people toward appropriate financial assistance programs. Call the NCIC number above for more information.
• Road to Recovery: volunteers provide transportation to and from treatment for people who have cancer but don’t have a ride or are unable to drive themselves.
• Hope Lodge: cancer patients and their caregivers have access to temporary housing when they need to travel away from home for treatment.
• What Next: a cancer support network where subscribers can anonymously share details about their cancer journey and connected with patients, experts on their specific condition.
“The American Cancer Society is there 24/7 to give both patients and their caregivers that extra layer of support to help save lives and prevent suffering. Help is available, and we want to be sure patients and caregivers know they don’t have to feel alone or go it alone,” Kirch says.
Visit Cancer.org for a more comprehensive list of support programs as well as a list of state-by-state services.