Things I wish I'd known: Cancer Caregivers Speak Out

There are four kinds of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers._ ~~ Former First Lady Rosylnn Carter
“Learning by trial and error is not the most effective way to save a loved one’s life,” says Deborah J. Cornwall, author of the new book _THINGS I WISH I’D KNOWN: CANCER CAREGIVERS SPEAK OUT._ “Even though survival statistics are improving, over 1.6 million people are newly diagnosed with cancer each year and about half of them are cared for by a family member. One study estimates the stress of caregiving can take as many as ten years off a family caregiver’s life. In order to improve the odds of a positive outcome, those who are fighting cancer need their caregivers to be prepared for the ordeal they’ll both face.”
Cornwall has twenty years of experience as a leadership volunteer and board member for the American Cancer Society (ACS) at the national, regional and local levels. Her work at the local level with individual cancer patients, survivors and caregivers inspired her to write the book because so many stories of care, survival and loss began with, “If only I had known . . . .”
In _THINGS I WISH I’D KNOWN,_ Cornwall intersperses real-life stories from 86 formal interviews and hundreds of personal conversations with advice on how to approach the critical issues and decisions facing a cancer caregiver. Practical and insightful, _THINGS I WISH I’D KNOWN_ explores topics such as:
* How cancer caregiving differs from other types. Cancer caregiving is unique because it strikes patients of any age, and the same treatments may affect each patient very differently.
* Caregiver stress, which is under-reported and under-recognized. Where it comes from, why it can’t be prevented, and how some caregivers manage it.
* Taking charge and pushing back. The importance of taking charge, especially steps to take if something just doesn’t feel right in the diagnostic or treatment processes. Ways of advocating for the patient in dealing with medical, financial, and community resources.
* Managing expectations: Doctors aren’t gods, and hospitals aren’t miracle factories. Ways of setting realistic expectations and learning how to disagree respectfully with medical professionals.
* The unique aspects of helping children deal with cancer.
* Why the question “What can I do to help?” isn’t helpful. How friends’ well-meaning efforts to help actually add to the stress caregivers face.
* Understanding “pull-aways” among friends and family.
* The unyielding need of caregivers whose patients have died to talk about their experiences and sense of loss as a form of therapy.
* Common after-death experiences (such as visions and dreams) that prove soothing to the caregiver. Most interviewees hadn’t ever shared these experiences with anyone before.
“Caregivers are often the silent and invisible protagonists in the war on cancer,” explains Cornwall. “It is essential they understand their roles in the kinds of decisions the patient will face, where to find needed information, what support resources are available, and how to navigate this unpredictable journey with patience and grace. The experience is life-changing, even if the patient survives. Stories from people who’ve been through it offer invaluable insights that can ease the experience for new caregivers and their patients.”