Caregivers of mesothelioma patients are remarkable people. They are truly unsung heroes. Navigating the medical world of a mesothelioma diagnosis is a complex, overwhelming task, yet it is a job too many unsuspecting individuals are forced to do when a loved one is diagnosed with mesothelioma.
Hopefully you’ve never heard of mesothelioma and no one you know is ever diagnosed . It is a horrific cancer caused by exposure to asbestos that attacks the lungs, abdomen and heart. There is no known cure.
But for those brave souls that are unexpectedly thrown off track when a loved one is diagnosed with mesothelioma, here are 10 tried and true must-know tips for caregivers of a mesothelioma patient.
These tips come from the gathered knowledge of real people – wives, husband, children, parents – that have come face-to-face with the medical world of doctors, hospitals, chemotherapy, radiation, surgery and more. The common theme to each and every tip? Take control and be your own advocate! After all, both you and the person you love are the ones with the most at stake.
10 Must-Know Tips for Mesothelioma Caregivers
1. Bring a Notebook to Doctor and Hospital Visits
For each and every doctor or hospital visit, bring a notebook solely for the purpose of writing down all of your notes and questions. In fact, bring two. One for notes and one to gather the contact information of people you meet throughout the process (see Tip #10).
2. There Are No Stupid Questions
“Meso what?” Most people have never heard of the disease. Understanding how the cancer is attacking the body and the mesothelioma treatment options available is equivalent to learning a foreign language. Learn to be a good student of the disease and treatment process. Come to doctor appointments with a prepared list of questions. And remember, there’s no such thing as asking too many questions.
3. Arm Yourself With Knowledge
Whoever said knowledge is power was right. When your loved one is starting treatment, get into the habit of making sure you understand exactly what is going to happen. What drugs are being used to combat the mesothelioma cancer? Why? What are the side effects? How should we cope with them? How long is the recovery to surgery? Don’t be left in the dark.
4. Beware the Internet
That said, choose your sources carefully. Don’t believe everything you read on the Internet about mesothelioma. “But I’m reading this on the Internet,” you say. That’s true, but there’s a lot of mesothelioma information out there that is outdated or misleading. The Internet can provide you with lots of valuable information, but when it comes to medical information, get your answers from the experts.
5. Get to Know the Medical Staff
Once you begin the treatment process, get to know the people caring for your loved one. Watch and learn from the nurses. Talk regularly with the doctors. From the very beginning you need to set a tone of open, direct communication.
6. Be the Squeaky Wheel
Maybe it’s not in your nature, but when your loved one is in the hospital, learn to be the squeaky wheel. If pain shots are coming late, tell the nurse. If the mesothelioma patient should have on compression boots after surgery and he or she doesn’t, then don’t leave until they’re on (this helps prevent blood clots). Remember, you ultimately have to take control and be your own advocate!
7. Roll Up Your Sleeves
Your job is hard, and there’s so much work you’re already doing. But if you feel comfortable, try to get involved in some of the hands-on tasks you’ve watched the nurses and doctors perform. Obviously you can’t insert IVs and draw blood, but you can learn to clean wounds and plug and unplug the IV so your loved one can get up and walk around. Doing this will get you more involved and, hopefully, get you both home quicker.
8. When In Doubt, Call the Doctor
When you’re away from the hospital or mesothelioma treatment center, you’re going to be the full-time caretaker. No nurses. No safety net. Be confident. You can do it. No one loves this person more than you. Watch for fevers, infection, and change in appetite. But remember, when in doubt, call the doctor.
9. Take Care of Yourself
This may be the greatest challenge you face: taking care of yourself. It’s hard to do but essential to making sure that you stay strong throughout this long and trying journey. So find time to rest. If you’re at the hospital, ask for a reclining chair in your room so you can rest while your loved one sleeps. And don’t forget to eat healthy.
10. Build a Support Network
Managing your life – let alone the mesothelioma diagnosis of a loved one – is hard enough. Don’t try to do it alone. Reach out to family and friends. Throughout your journey you will meet other amazing people that are facing the same challenges that you face. Build a network of support and use it on a regular basis.
If you are a mesothelioma caregiver or patient and have questions, concerns, or just need to talk, help is out there. Get in touch with the Meso Foundation or contact the Mesothelioma Hope Center.
