Mesothelioma impacts the life of the person diagnosed as well as the lives of their family and friends. Mesothelioma caregivers often become the fundamental source of support and comfort for the patient.
However, being a mesothelioma caregiver can often be challenging too. These selfless individuals put their own needs behind those of their loved one to provide care — whether that care is physical, emotional, or both.
While it’s natural to turn all of your time and attention toward helping them, it’s important to look after yourself as well. After all, you can only help your loved one if you take care of yourself first.
By building a support system and learning strategies to manage these tasks, you can navigate this challenging time more effectively and avoid caregiver burnout.
If you or a loved one has been diagnosed with mesothelioma, we may be able to help you seek compensation for medical bills, respite care, and more. Contact us now.
Find out more about ways to support your loved one — and yourself — when acting as a mesothelioma caregiver.
1. Bring a Notebook to Doctors’ Visits
Mesothelioma is a rare, complex disease, which means appointments may involve many unfamiliar terms and potentially confusing conversations. Keeping a notebook handy can help you stay organized and ensure critical information isn’t forgotten.
Your notebook can serve multiple purposes, allowing you to:
- Record the doctor’s recommendations, medication instructions, or details about upcoming treatments, so you can create a record to refer back to and share with other caregivers
- Track symptoms, side effects, and any changes between appointments to help the medical team make informed decisions about care
- Write down a list of questions you or your loved one may have, so you’re prepared to address them during the visit
“It’s natural to have a lot of questions,” said Amy Fair, registered nurse. “I tell folks to get a piece of paper and a pencil. Keep it on your nightstand, and even if it’s the middle of the night, if you’ve got a question, write it down.”
2. Arm Yourself with Knowledge
After a loved one is diagnosed with mesothelioma, it’s important to understand their illness, symptoms, and options. What medications are available? What are the side effects, and how can you manage them? How long should you expect the recovery process to take after surgery?
Don’t be left in the dark — take the time to learn everything you can about mesothelioma, so you’ll be able to anticipate challenges and offer support every step of the way. The more you know, the better equipped you’ll be to serve as your loved one’s mesothelioma caregiver.
“I think I’ve almost got my medical degree now from taking care of Craig. We just had to take it day by day.”
– Shelly, Wife of Mesothelioma Warrior Craig
3. Beware of Misinformation Online
The internet can be a valuable resource, but it’s also full of outdated or misleading information, especially when it comes to complex medical conditions like mesothelioma.
While it’s natural to seek answers online, the posts you find may lead to confusion and anxiety. Each case is unique, and it’s important to choose your sources carefully.
“So many people go on Dr. Google, and there’s a lot of not just misinformation, but also information that doesn’t apply to that particular individual.”
– Dr. Raja Flores, Mesothelioma Specialist
The internet can provide you with lots of valuable information, but when it comes to medical information, get your answers from the experts.
4. Get to Know the Medical Staff
Once the mesothelioma treatment process begins, it’s important to establish strong relationships with the people caring for your loved one. Having open communication with those involved in their care may allow you to feel more comfortable asking questions or addressing concerns.
While it may not come naturally to everyone, it’s important to speak with hospital staff about any issues that may arise.
Learn to be the squeaky wheel:
- If medication schedules aren’t being followed, tell the nurse.
- If the mesothelioma patient should have compression boots after surgery and they don’t, then don’t leave until they’re on — this helps prevent blood clots.
- If pain relief is delayed or something doesn’t seem right, don’t hesitate to speak up for your loved one’s needs.
Remember, you ultimately have to take control and be your loved one’s advocate in a hospital setting.
5. Roll Up Your Sleeves
Caring for someone with mesothelioma is no small task, and you’re already doing so much. But if you feel comfortable, consider getting involved in some of the hands-on tasks you’ve watched the nurses and doctors perform.
Watching and learning from nurses during hospital visits can be incredibly valuable, especially if you need to provide similar care at home. Their tips and techniques can help make challenging tasks, like learning to clean wounds or removing an IV, feel more manageable.
“Our youngest son and I, we had to be taught how to clean his wounds. That’s a lot on anyone, but when you’re looking at the man who has been your rock your entire marriage, and to see him laid open like that, yeah, mesothelioma changed our lives drastically.”
– Constance, Wife of Mesothelioma Patient Alan
Although stepping into this role can be challenging, your willingness to learn and support your loved one can make a meaningful difference in their care and comfort levels — and hopefully get you both home sooner.
6. When in Doubt, Call the Doctor
As a caregiver, you’re the first line of defense when it comes to your loved one’s well-being. However, there may be moments when you’re unsure about what’s normal or what’s cause for concern.
Don’t hesitate to call the doctor if something doesn’t feel right, whether it’s a new symptom, a change in behavior, or a question about how to manage their care.
Doctors are there to provide guidance and reassurance. By reaching out with your concerns, you can gain clarity, address potential issues early, and find peace of mind knowing you’re taking the correct steps to support your loved one.
7. Take Care of Yourself
Caring for a loved one with mesothelioma can be both physically and emotionally exhausting. It’s easy to forget your own needs while focusing on theirs, but it’s important to prioritize your well-being whenever possible.
Take care of your physical health by eating well, staying active, and getting rest whenever possible. It’s also vital to make time for activities that recharge you, like journaling, reading, or spending time in nature. These small acts of self-care can make a big difference.
“Being a caregiver to somebody with mesothelioma and a dad at the same time is pretty exhausting, but I’m going to do whatever it takes to get my family across the finish line at the end of the day.”
– Brandon, Husband of Mesothelioma Survivor Jessica
Realize that you don’t need to do everything for your loved one, and you should not be afraid to ask for help when you need it. Family members or neighbors may be willing to help with household tasks or be with your loved one while you take an afternoon “off.”
If you’re a caregiver to a veteran with mesothelioma, you may also be eligible for mental health counseling through the U.S. Department of Veterans Affairs. Therapy can provide additional support during this challenging time.
8. Build a Support Network
Managing your own life, along with the needs and appointments of a loved one diagnosed with mesothelioma, is challenging — but you don’t have to do it alone.
It can be invaluable to connect with others who are in a similar situation. Caregiver support groups, whether in person or online, may offer a space to share stories, problem-solve, and discover new strategies. Mentors can also provide support to you and your loved one.
“I go to New York with people. I sit with them to have their chemo and go with them to have their surgeries, because I know what that did for me. My mentor is still here today. I want to help people going through this and show them, look, I did this, you can do it too.”
– Mary Jane, Peritoneal Mesothelioma Survivor
Finding a trusted friend, neighbor, or clergyperson to talk with on a regular basis may also help. Relying on someone outside of your family can give you a more objective opinion, be a sympathetic ear, and remind you that you are doing the best you can with a difficult job.
Isolation can make caregiving even harder, so it’s important to build and rely on your support network. Don’t hesitate to reach out to those around you for practical assistance, a second opinion, or simply words of encouragement.
9. Seek Out Respite Care
As a mesothelioma caregiver, it’s essential to take breaks from time to time in order to avoid burnout. Respite care provides short-term relief, allowing you to recharge while ensuring your loved one continues to receive proper care.
This assistance can come from private agencies that offer in-home care or even family and friends. Options are available for as little as a few hours or as long as several days or weeks, and insurance may help cover some of the cost.
Asking for help isn’t always easy, but it’s a crucial step in maintaining your own well-being. Taking time to rest and recharge doesn’t diminish your role as a caregiver — it strengthens it.
10. Pursue Financial Compensation
Unfortunately, given the high cost of traveling to specialists and receiving treatments, mesothelioma also creates a financial burden for many families. You may be able to pursue compensation from a mesothelioma lawsuit to help offset these costs.
“My husband insisted we file a mesothelioma lawsuit. He thought that was our only option because the treatment pretty much destroyed us financially. So we filed a lawsuit to see what could be done to help us continue with the treatment.”
– Dr. Bonnie Snyder, Pleural Mesothelioma Survivor
At Simmons Hanly Conroy, we’ve secured over $9.9 billion in mesothelioma compensation for families nationwide.
This money has helped patients and caregivers with medical bills, lost wages, home modifications, end-of-life care, and securing the family’s financial future.
Providing Mesothelioma Support for Affected Families
Caring for a loved one with mesothelioma is challenging, but you don’t have to navigate it alone. At Simmons Hanly Conroy, we strive to ease the burden for caregivers and families through personalized support and resources.
With on-staff nurses and a dedicated legal team, we can help reduce your stress and provide guidance at every step of the journey.
At Simmons Hanly Conroy, our medical team can help you with:
- Finding mesothelioma specialists for expert care
- Coordinating travel and lodging arrangements for treatments
- Interpreting test results and explaining treatment options
- Locating support groups tailored to your needs
- Securing non-medical services, like pet sitting and childcare
Additionally, our asbestos attorneys can identify and file all of the mesothelioma claims you qualify for in order to maximize your potential compensation.
Call (800) 326-8900 now or fill out our contact form to get a free, no-obligation legal consultation.
