The Imperfect Caregiver

A Guest Post by Dani Alexis www.mesotheliomahelp.org

Mesothelioma is a type of cancer that affects the “mesothelium,” a layer of tissue found inside the lungs and lining other organs and areas of the body. Unlike some types of cancer, mesothelioma nearly always has a definable cause, like exposure to asbestos, silica dust, or similar substances.

Although the cause can often be pinpointed, that doesn’t change the reality of the disease or the fact that diagnosis often creates more questions than it answers.  Mesothelioma can leave a person who has it feeling helpless, angry, or afraid – and it can leave caregivers wondering what they can do to help.  Here are five concrete, practical ways you can make a difference.

• Keep a health log. Mesothelioma is a progressive disease, and every person who has it responds to treatment a little differently. By taking on the task of tracking medications and making brief daily notes about your loved one’s health, you can help your loved one and their doctor spot patterns that will help to determine whether or not a particular treatment is working.

• Become a good administrator. From keeping track of doctor’s appointments to making sure your loved one’s end-of-life plans are committed to writing, an illness like mesothelioma comes with a lot of paperwork. Spend a little time every day getting acquainted with your loved one’s current treatment plan, their insurance policies, and their estate plans.  Work with them to have yourself added to the list of people with whom their doctor may discuss their care.  Take these steps before you need to, so you’re ready if a crisis occurs.

• Know your own rights. Millions of U.S. workers are covered by the federal Family and Medical Leave Act (FMLA), which allows them to take up to 12 weeks off work, unpaid, to care for a family member. Many workers also have compensation packages that allow them to take paid or unpaid time to care for a sick family member.  Check to see whether your workplace is covered by FMLA and what your compensation package offers, so you know how much time you have and what you need to do to protect your job and take care of your loved one.

• Listen. Mesothelioma can be devastating news. The diagnosis often seems to come out of nowhere, and the fact that it can often be traced to a specific event, job, or time period can make the diagnosis seem even more unfair.  The best thing you can do for your loved one is to listen and encourage them to express their feelings. Your loved one may be feeling afraid, anxious, betrayed, angry, or hurt.  They may seem to have accepted the diagnosis one day, only to rage against the unfairness of it the next.  Remind them that their feelings are valid and that it’s okay to talk, cry, or process them in healthy ways, such as through journaling or exercise.

1. Support yourself as well. It’s tough to be the “on call” person for your loved one all day, every day. Finding time for yourself can seem impossible.  That’s where a support group can help.  By connecting with other caregivers, you gain a place to safely process your feelings, as well as advice and guidance from others who are facing the same challenges you are.  Can’t find a support group for mesothelioma caregivers near you?  Try looking for support groups online or talking to those who provide care for family members with other chronic or serious conditions, such as cerebral palsy.  Even when the conditions are different, many of the tasks of caregiving – and the tips for making that caregiving easier – are the same.

www.mesotheliomahelp.org

If you are a caregiver for someone with mesothelioma, or know someone who is, and you would like a free Caregivers Are Heroes wrist band – send your request along with the complete mailing address including the street name and number, city, state, and zip code to me at bcarducci@comcast.net  (Continental U.S. address only).