by Tim Povtak
Caring for a loved one with malignant mesothelioma can seem overwhelming at times, but it also can be richly rewarding. And often, it becomes both.
Mesothelioma is a rare and aggressive cancer most often caused by a long-ago occupational exposure to asbestos. It strikes the diagnosed patient and possibly their family.
While a medical health care professional may determine a treatment regimen, the primary caregiver will determine just how the patient lives.
Caregiving becomes quickly critical in the process and the duties intensify as the disease progresses.
Unfortunately, there is no definitive cure for mesothelioma, and the typical prognosis is 6-18 months. But recent advances at specialty centers with a multidisciplinary approach are allowing some survivors to live two, three, four or more years beyond their prognosis.
Mesothelioma treatment can include chemotherapy, radiation, major surgery or a combination of all three, often leaving the patient mentally and physically drained.
Here are five ways you can help as the caregiver:
- Make decisions: Mesothelioma may overwhelm the patient when there are complex treatment options, health insurance concerns, legal and financial decisions to make. There also is end-of-life care that needs to be discussed early in the process.
- Provide emotional support: A mesothelioma patient will need emotional support and companionship through the process. A patient should not be expected to do this alone. The patient will have physically and emotionally good and bad days, making it imperative to have someone to lean on. Often, all that’s needed is someone to listen.
- Monitor health: The doctors and nurses taking care of a mesothelioma patient often turn to the caregiver for details that are tough to remember. A caregiver can manage medications at home and report any changing health issues a patient may not care to report and consider too minor to report.
- Explore alternative or complementary therapies: Help your loved one think outside the box a little. Homeopathic treatments, such as herbs and anti-oxidants, can help sometimes. Doctors may treat a disease without treating the whole body, which is something you can do. Mind-body therapies, such as yoga and energy therapies, including music, can help, too.
- Join a support group: This is important for caregivers and patients. A rare cancer, such as mesothelioma, can leave you feeling isolated if there is no one else to talk with who understands exactly what you are going through. People in a support group often can answer your questions better than the doctors or nurses because they are going through the same issues. The Mesothelioma Center has a support group that meets by phone and online 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.”
Tim Povtak is a writer for The Mesothelioma Center and Asbestos.com.