"Things I Wish I'd Known: Cancer Caregivers Speak Out" isn't a fun book to read, but it is a book that almost everyone should read.
As Rosalynn Carter, wife of former President Jimmy Carter, once said, "There are only four kinds of people in this world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."
In "Things I Wish I'd Known," cancer survivor and American Cancer Society volunteer Deborah Cornwall shares the wisdom she gained from her experiences and 86 interviews with caregivers.
She points out that an estimated 75 percent of American households will at some point provide care for a relative or friend with cancer.
Cornwall's book offers a road map from diagnosis through whatever fate awaits the cancer patient, whether it's a cure, remission, long-term management of the disease or death.
She notes that while getting a cancer diagnosis can be a life-altering event for everyone involved, getting the proper diagnosis can sometimes be a long, difficult process.
Cornwall tells of many caregivers who had to keep pushing to find out what was wrong with a loved one.
Over and over in her book, caregivers are given advice on how to carry out one of their most important roles — being an advocate for the patient.
Part of that job is absorbing information from the medical team treating the patient, although most caregivers will end up doing quite a bit of research on their own.
Cornwall lists reputable Internet sites to find information on cancer, from basic explanations of medical terms to finding and enrolling in a clinical trial for a potential cancer treatment.
She recommends that caretakers prepare questions in advance and bring notebooks or tape recorders to appointments with doctors, since most people can't memorize all the information they hear.
They can also take advantage of the services of hospital-based patient navigators and social workers, who help patients and caregivers through the health care system and cancer journey.
When it comes to choosing to receive care at a community hospital versus a major cancer center, caregivers interviewed by Cornwall almost always recommended choosing a major cancer center.
After a person is diagnosed with cancer, many people offer to help, but that actually can create a new burden on caregivers when people don't say specifically what they would like to do. Caregivers can create lists of things that need to be done, then enlist another person in signing up volunteers for the tasks.
One caregiver left a cooler with ice on her front porch so that well-wishers could drop off meals. That way, she didn't have to coordinate meal drop-off times with them.
"Things I Wish I'd Known" also includes chapters on managing financial and legal issues, children and cancer, managing caregiver emotions and health, the dying process and cancer's aftermath.
Caregivers who lost loved ones often felt adrift and unfocused once they were no longer engaged in the war against cancer. Many found new direction as volunteers with cancer nonprofit groups.
All said that caregiving had enriched their lives and that they felt stronger, wiser and more self-confident, no matter what the outcome had been for their loved ones.
For information on how to buy "Things I Wish I'd Known," visit www.thingsiwishidknown.com/.
Staff reporter Vickie Aldous can be reached at 541-479-8199 or firstname.lastname@example.org.