Excerpt From Chapter One
Michael L’s mother “Cancer” is a taboo word. It never comes into your mind when
your child is sick. When they told me, I couldn’t see or hear anything. My mind was
racing. Mothers want to fix things, but I had to let go.
Lynn’s husband Caregiving happened to me all at once. One night we were having
dinner together, and the next morning life just stopped and then everything went
in a different direction.
Ed’s wife We had moved to a new state where we had new jobs and no new friends yet.
We had come here as an adventure, but it felt like we had gotten on the wrong bus,
with only sick people, and we couldn’t get off.
Most interviewees were stunned by the seemingly random nature of the disease. Few of their patients had family histories that pre-disposed them to cancer. Many were young, or athletic and very fit. Almost none were smokers. Most were already eating low-fat diets with lots of fresh fruits and vegetables. Most had kept up with their annual physical exams.
The question “How could this happen?” may never be answered, so once the surprise wears off, caregivers have to be prepared to live with ambiguity.
While cancer is an equal-opportunity threat to quality of life and survival itself, there is good news for many: It’s no longer an automatic death sentence. That’s where caregivers come in.
What Is a “Family Caregiver”?
If you’re working without pay to assist a cancer patient who needs support to pursue the activities of daily life, you are what’s called a “family caregiver.” (Most family caregivers—87%—are relatives, and most of the rest are friends.) You’re a non-professional who is assuming a pivotal role in helping a cancer patient survive his ordeal with a reasonable quality of life, and you’re in good company. Rosalynn Carter, former first lady of the United States, was talking about you when she 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.”
Family caregivers are very different from professional ones. Ellen M was a registered nurse who became a senior executive in a large health care system before being diagnosed with her first brain tumor. Her perspective on caregiving was changed by her own patient experience and that of having her husband as her caregiver:
Professional caregivers don’t experience the emotional ups and downs that a family
caregiver does. The family caregiver truly bears the brunt to support the patient in
the right ways, not too much or too little. It’s critical for the patient’s progress.
Prepare to Invent Your Own Way
If you’re a new caregiver, you’ll face many challenges. You’ll need to partner with the members of your medical team while asking questions and, if necessary, pushing back without alienating them. You’ll have to be decisive while at the same time giving the patient latitude to control his destiny. You’ll seek to restore a sense of control in a seemingly unmanagable situation while going with the flow.
Bobbi, a long-time breast cancer survivor, articulated the challenge:
Caregivers have a difficult emotional role. They don’t face the daily adrenaline
surge that the patient does, but they have to pick up the pieces when things aren't
going well. It's hard for them to know when to reach in and when not to. They walk
a tightrope between letting the patient be in control and being able to take care of
them without letting their patient feel incapacitated. Caregivers haven't experienced
the physical pain, but they also can't make it go away. The caregiver has to be strong,
but not overpowering; sympathetic and optimistic, but not saccarine; realistic but
not discouraging; upbeat but not inappropriately happy.
As you consider playing such a delicate role, you’re probably just beginning to figure out what questions you need to ask. Don’t be surprised when the more answers you get, the more questions come to mind. Above all, don’t expect that your caregiving experience will come in neat sequential steps or that you’ll know what to do right away. You may feel like Tracy’s husband:
I’d had nothing to help me steer how to behave or what to do. I had to make it up
as I went along.
Your caregiving challenges will vary with the type and severity of the diagnosis. You’ll have to wear multiple “hats” as you confront a host of situations:
At times you’ll be bored, and at other times you’ll find yourself suddenly overwhelmed with conflicting urgent demands. If you’ve been a very organized person or a planner in the past, this flurry of unexpected activities will be intensely frustrating.
Know that caregiving will test your physical health, stamina, patience, emotional stability, and commitment to your loved one many times over, and in ways that are hard to imagine. Some days you’ll feel so overwhelmed, exhausted and discouraged that you’d like nothing better than to throw in the towel, if only you had that option. This preview of the roller coaster ride and the stresses you’ll encounter along the way is not meant to discourage you before you even start on your cancer caregiving journey. Rather, it’s intended to encourage you to take a deep breath, summon your inner strength, buckle your seatbelt, and read on with clearer expectations and an open mind.
Many first-time caregivers feel as though they have plunged into a foreign country with a new language, a hostile climate, and challenging terrain. In the words of Michael L’s mother:
You wait your whole life to travel to Italy. Finally, you make all the reservations, you
collect all the brochures and tour guidebooks, and you even learn some of the language.
You board the plane all excited. When you land, the pilot announces, “Welcome to
Shocked, you stutter, “Holland? I’m supposed to be in Italy. I have all the guidebooks,
the maps, and I even know the language.”
But soon you realize that Holland, too, can be beautiful. It has tulips and windmills,
and you start to collect new maps and to learn a new language. It will never be Italy,
but Holland can be a beautiful place to live.