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Cancer's caregiver crisis of control

By Deborah J. Cornwall, Special to CNN
updated 6:14 AM EST, Fri February 1, 2013
It can be helpful for caregivers to realize that while they can't control everything, they can control their reactions.
  • A diagnoses of cancer can throw caregivers into a crisis of control
  • Caregiving can pose new challenges just as you think you've mastered the old one
  • Caregivers must acknowledge the things that are beyond their control
  • It can help to focus on the things that caregivers can control

Editor's note: Deborah J. Cornwall, an experienced advocate on behalf of cancer patients and their families, is the author of "Things I Wish I'd Known: Cancer Caregivers Speak Out," based on interviews with 86 cancer caregivers and dozens of patients and survivors.

(CNN) -- Life experience doesn't prepare you for cancer caregiving.

Most of us want to believe that we are in control, that events aren't happening at random or in reaction to forces beyond our understanding. As we mature, many of us become "fixers" for ourselves, our family and friends: We help people solve problems and get things done. We make plans and truly believe we can carry them out.

Hearing the "C" word

Deborah J. Cornwall
Deborah J. Cornwall

Then we hear that a loved one has cancer, and we're suddenly terrified, dazed, confused and physically stricken. The initial cancer diagnosis throws most cancer caregivers into an immediate crisis of control.

Formal interviews with 86 cancer family caregivers and informal conversations with dozens of survivors and people undergoing treatment reveal that most of them experience violent and mind-numbing images at the moment of diagnosis.

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They described being dumped at sea, swimming as fast as they could but taking on water at every stroke. They talked of the extreme uncertainty of a rug being pulled out from under their feet, a car crash, an earthquake, or a shark bite.

Some even described it like getting on the wrong bus and finding the destination filled with sick people, or being dropped into a foreign country, where they didn't know the language, terrain, customs, or how things worked.

All of these images were common and revealing. Not only is the caregiver's routine unpredictable in both duration and outcome, but it changes from one day to the next. It constantly poses new challenges just when you think you've mastered the old one.

So how do the millions of cancer caregivers get through the experience whole, both physically and emotionally?

Coping behaviors

Everyone copes with the loss of control in different ways, usually out of fear of the unknown.

Initially, some caregivers don't react well. One husband of a terminal cancer patient made a serious pass at his wife's best friend, who also served as her caregiver. It was awkward, to say the least, making the friend back away from any situation where he might be present.

Another caregiver, the wife of a seriously ill cancer patient, went into therapy because her fear of being abandoned led her to develop a crush on another man. A third -- a corporate senior executive who had already lost two siblings and was helping his young wife fight breast cancer -- nearly engaged in a bar fight before he pulled back from the brink.

Cancer caregivers must acknowledge the things that are beyond their control and define those factors that they can control. Caregivers who handled the cancer experience most effectively were those who realized that even though they couldn't control events, they could control how they reacted to events.

That's what happened when Carl's wife challenged him -- after he lost one leg to bone cancer -- to continue swimming (his favorite pastime) with the full use of the body parts that remained.

"Don't waste time and energy on what you've lost," she told him, "but focus on what you and we still have."

For those who are used to living a fairly structured life, giving up control may make the adjustment to cancer caregiving especially unsettling. Yet when caregivers focused on the things they could control, the issues on which they could take action, they regained their equilibrium and felt more empowered.

Those controllable things included:

-- Information: the ability to gather information and make informed choices about their medical team and where and how to be treated.

-- What kinds of support they might access from their cancer center and communities, including cancer organizations such as the American Cancer Society, the National Cancer Institute and organizations that specialize in particular cancer diagnoses.

-- How financial, employment, and insurance issues would be handled.

-- What help they would need, from whom and when.

-- How children would be cared for during the patient's absences from home in order to maintain their day-to-day normalcy to the degree possible.

-- What they would do every day to keep themselves physically and mentally strong.

-- How they could bring joy into the day for the person in treatment, helping them to recognize that they can savor life as long as they live, despite the uncertainty of how long that will be.

For some, even being able to determine how and when to orchestrate a loved one's death was empowering.

Perhaps the most challenging control issue for caregivers was allowing the patient to be in control of critical decisions. Caregivers are critical information gatherers and decision support resources, but in the end, it's not their body or soul that's being affected by cancer treatments.

Caregiving is a partnership with the person in treatment, and the role of the caregiver is a joint decision.

The bottom line for cancer caregivers is that once they learn can navigate the crisis of control, they will discover in themselves a resourcefulness, ingenuity, and strength that will serve them well throughout the rest of their lives.