Straight Talk about Mesothelioma, a blog series created by Michael T. Milano, M.D., Ph.D., a radiation oncology specialist, as a resource for mesothelioma patients and their loved ones.
Every year in the U.S. around 3,200 people are diagnosed with mesothelioma, a deadly form of cancer. This disease is particularly difficult for patients and caregivers, since the life expectancy is usually less than 5 years.
Those caring for loved ones with mesothelioma can feel overwhelmed; not only are they helping their loved one fight the disease, they must also consider their families, jobs, health insurance, and overall financial situations. Because of these pressures, it’s crucial for caregivers to find resources that help them negotiate this process.
Caregivers Face Multiple Stressors
One of the main stresses that patients and caregivers face is how much waiting is involved following a mesothelioma diagnosis. It takes time to receive test and biopsy results, determine the best treatment methods, and plan for what might happen if the treatment doesn’t work. Caregivers often take on the responsibility of being in contact with the health insurance company, especially when it comes to understanding which medical expenses will be covered, and how much they may need to pay out of pocket.
Patients and caregivers need to understand the medications that are prescribed, including why each medication has been prescribed, when and how it should be taken, and what the side effects may be. Often, caregivers must help make legal arrangements for what will happen if their loved one cannot manage their own finances, or if they are unable to make healthcare decisions on their own.
Since treatments for cancer are often done on an outpatient basis, much care ends up being provided at home. Someone must be there to help the patient with daily tasks such as eating, getting dressed, and taking baths, and assist them in getting to appointments. In addition to these duties, caregivers must also balance their family responsibilities and household chores.
Sometimes caregivers have to work fewer hours, take early retirement, or find someone who can stay with or check on their loved one during the day. While the caregiving process can bring families closer together, caregivers can also become exhausted and risk of depression if they do not have adequate caregiver resources and outside support.
Home Care Resources
It’s crucial that caregivers know their limits, and how to ask for help. Caregivers should not be afraid to seek counseling, especially if they are feeling hopeless, or turning to alcohol or drugs for comfort. Among other caregiver resources, they can take their loved one to a respite care center for an afternoon, or find someone who can be with them for a few hours, while the caregiver takes time for themselves. Caregivers should also make lists of tasks that can be done by family members, friends, or neighbors, so they aren’t trying to manage everything on their own.
When caregivers devote time to self-care, they are less stressed and can better support their loved one. Caregivers might also find a support outlet by going out with other people to socialize, or through meditation groups, and other practices that focus on relaxation. Additionally, they must remember to care for their own bodies by eating well and exercising.
Finding Outside Support
While caregivers should not be afraid to look to friends and family for support, groups such as the American Cancer Society (ACS) provide caregiver resources, including lists of local support groups. Through talking with others whose family members have had the same diagnosis, caregivers can find emotional support and understanding.
Above all, it is important for caregivers to remember that they are not alone in making these life adjustments. Support networks and caregiver resources are available, they just need to ask.