When my brother was diagnosed with brain cancer, it changed all of our lives, in ways big and small. The texture of reality shifted as anxiety and uncertainty set in. All of our future plans were placed on hold. And a new kind of normal began to replace the old, one in which doctor’s appointments were as common as coffee dates.
The fact that my brother came to Roswell Park to be treated shaped my family’s future more than any other factor. Fortunately, my mother lives just outside Buffalo, and was willing to become his primary caregiver, doing whatever he needed in order to make his treatments on time. But I lived halfway around the world, and thus had some choices to make.
Our situation, as I’ve learned, is fairly common. In fact, the Family Caregiver Alliance estimates that about 29% of the U.S. adult population, about 65.7 million people, are providing care to someone who is ill, disabled or aged.
Of that population, the majority are middle-aged women like my mom—women squeezed between growing kids and aging parents.
But of course, in every culture, you can find caregivers of all ages, facing unique challenges along the way.
My peers in their 20s and 30s, I’ve observed, often talk of passing up career opportunities and time with friends to spend time with loved ones. When I quit my job and moved home, I certainly experienced these difficulties myself.
Meanwhile, I’ve seen caregivers in their 40s and 50s struggle to balance kids, job responsibilities and their own health issues. My mom was born to the primary caregiver role in many ways—she’s a cancer survivor herself, and a tough and experienced social worker. But it was still tough for her to head off to work each day as my brother puffed up from his steroids, developed painful rashes in response to his chemotherapy, and finally, lost his beloved head of blonde hair.
“I don’t pretend to know how that feels,” she told me recently. “But I grieved along with him.”
And of course, neither of us could know how my brother truly felt.
Fortunately, we’ve all developed support networks of people who can understand us individually. My brother has connected with fellow cancer sufferers via StupidCancer.org. I’ve reconnected with several 20something friends who now care for sick relatives. And my mom has found another “mentor” mom via Imerman’s Angels, a service that helps cancer patients and caregivers find support networks.
And of course, there are things that unite us all, emotions common to other survivors of trauma: denial, anger, depression, and acceptance. The psychiatrist Elisabeth Kübler-Ross has controversially called these “stages,” but many people don’t pass through them; they feel them differently from moment to moment. For me, they are more like possible notes on a scale—and you wake up each day not knowing which combination you will play.
In families of caregivers, this can be a blessing: when you’re down, someone else is up, and you can strike a healthy chord together. (There were plenty of times when the “down” one was me, and my baby brother was the one running to the pharmacy for aspirin, or finding us a funny video to watch.)
But other times, you’re stuck playing a lonely solo note of sadness, feeling like no one can relate to your experience. Or you strike a sour note of conflict with the patient’s other loved ones. For example, an eternal optimist and a skeptical pessimist might clash, or a faraway relative will feud with the ones living nearby.
In the early days following a diagnosis, it can be tempting to cope with the disharmony by simply doing stuff. The cancer treatment process can make this easy enough: go here, fill out this form, see you bright and early for the bloodwork. And doing things is much better than, say, hiding under a blanket for several months.
But the ideal scenario, I think, is for families to write a musical score together. To make a plan from the beginning for keeping your entire network informed and healthy, not just the guy (or gal) with the tumor. To split up the necessary research between friends and family members. To make a master tasklist to figure out what needs to be done. And to assemble a large and talented team to tackle the cancer to-do list, including all those people who are telling you now, “If there’s any way I can help…”
I also think that regardless of your age or situation, it’s important to listen to the notes you’re sounding yourself, and make sure they are good ones. Because you’re the only one who can do so. And if you are bent on playing the music you were meant to play, if you keep painting or writing or playing with the kids the way you did before because it makes you feel alive, it’s far more likely that others in your situation will be moved to hum along.
Here are some resources to share with your friends and family as you make your cancer to-do list.
ROSWELL PARK RESOURCES
Roswell Park: Cancer 101
The basics of cancer. Good for reviewing, as well as forwarding to those who have basic questions.
Roswell: Patient Advocate Program
Patient Advocates can help you and your family to find solutions for problems that arise during your care at Roswell, like communicating with doctors and resolving billing questions.
Roswell: Patient Navigator Program
Sometimes, life outside Roswell can get in the way of your loved one’s care. Patient Navigators can help you with transportation, lodging, financial, and emotional issues that may be impacting you and your family.
Full list of supportive services:
About.com: US Government Resources
The government may be able to help you and your family. But you have to find and fill out the right forms to ask for assistance. Though some organizations may tell you to wait, my mother found it was best to begin this process as soon as possible following my brother’s diagnosis. This can be an excellent task to delegate to faraway family members who are looking for ways to help.
The American Cancer Society: Caregiving Resources
Along with maintaining some helpful online resources and an online support community, the American Cancer Society supports important on-the-ground programs for patients and their families.
For example, I Can Cope, which provides “cancer classes” for patients and caregivers, and Road to Recovery, which provides rides to treatments—so caregivers can save their time off for when it’s truly needed.
Anticancer: A New Way of Life
My mother found this book very helpful as she made a list of things she could do for my brother.
Cancer.gov: Coping Resources
If you’re feeling alone in your experience with cancer—or you know someone who is—this database of resources can be useful.
Family Caregiver Alliance: Tools for Caregivers
A step-by-step guide to surmounting the issues all caregivers face.
Imerman’s Angels: A mentor matching service for those touched by cancer
Having a support network—whether you’re a cancer patient or a caregiver—is so important. Often, having someone outside your usual circle of friends and family can be very helpful.
Next month, I'll share my thoughts on communicating with others about your cancer diagnosis, particulalry with work supervisors, teachers and other authority figures you may have in your life. Hope you'll join us then.