Caring for Patients with Mesothelioma

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Mesothelioma is a rare and aggressive cancer most often caused by a long-ago occupational exposure to asbestos, typically striking those in the retirement stage of life.

Although there is no definitive cure — and a diagnosis is met with considerable gloom and doom — recent therapeutic advances have begun extending lives significantly, raising the importance of a primary caregiver at home.

Instead of the past cancer prognosis of 6-18 months to live, some patients today are surviving two, three, four or more years after finding a mesothelioma specialty center that uses a multidisciplinary approach to treatment.

Taking care of a mesothelioma patient might seem like a daunting task, but it also can be a richly rewarding experience if provided the necessary tools. Understanding the cancer is important.

Pleural mesothelioma, the most common type, begins in the thin membrane surrounding the thoracic cavity. It stems from inhaling microscopic asbestos fibers, which become lodged in the lining around the lungs. They slowly cause inflammation and scarring, and eventually lead to cancer several decades later.

Early symptoms may include tightness of the chest, a persistent dry cough and strained breathing patterns. The later stages of disease can be debilitating, often making the simplest of tasks impossible without a caregiver at home. An uncertain future only adds stress to the patient and family.

A mesothelioma caregiver might be dealing with medical and legal professionals, remembering medications and treatments, managing appointments and financial affairs. In the latter stages, the caregiver could be feeding and bathing the patient, too.

The caregiver can become overwhelmed, struggling to maintain his or her own life. To improve patient care, there are some important things a caregiver should remember.

Here are a few:

  • The better you feel, the better care you will provide. So take care of yourself physically and mentally. Even with a demanding schedule, find the time to recharge your own batteries. Eat right.
  • Accept help from others. Ask for it, too. Too often, a caregiver tries to go it alone, and becomes worn down. It may seem admirable to spend every last minute alongside your spouse, but that often backfires. Let other family members or friends help with daily chores and provide a break.
  • Explore alternative or complementary therapies. Think outside the box. It might seem odd, but homeopathic treatments like herbs and anti-oxidants can sometimes help. Mind-body therapies, such as yoga, and even energy therapies, including music, can help, too.
  • Talk to others dealing with the same rare disease. Join a support group. Those in the group may understand your questions better than a nurse or doctor would. It also takes away the isolation that a caregiver often feels. The Mesothelioma Center has a support group that meets by phone monthly to discuss various topics.

“Sometimes, I think caregivers are the forgotten casualties in all this,” said Linda Chitwood, who has been her husband’s mesothelioma caregiver in southeast Virginia for eight years. “There is such a range of emotions you have to go through. And it can be terribly isolating if you’re not careful. You have to take care of yourself, too, if you want to be a good caregiver.”

If you’re interested in reading more about her and her husband’s journey, she detailed it in her 2012 book, “Fear 2 Faith: Our Journey Through Mesothelioma.” It contains their highs and lows, as well as the heartaches and heartwarming experiences.

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