Mesothelioma Caregivers Support

Being a mesothelioma caregiver is a challenging yet rewarding role. It can be physically and emotionally taxing, but family and friends are often willing to help, and numerous mesothelioma caregivers support resources are available. The most important things to remember are: Take care of yourself, and don’t try to do it alone.

Get a Free Case Review

Being a Mesothelioma Caregiver

Mesothelioma caregivers play a critical role in the lives of mesothelioma patients who typically require multiple types of mesothelioma treatment to help remove tumors, manage symptoms, and improve quality of life.

These patients rely on caregivers to take them to and from doctors appointments and hospital stays. Even worse, as the illness advances, mesothelioma victims sadly become more dependent upon their caregivers just to survive.

The role of caregiver can be a very rewarding one. Giving back to loved ones when they need you most is a gift many cherish. However, it can be taxing, both emotionally and physically.

It is important for caregivers to receive support for themselves so they remain strong enough to care for those depending on them. Just as passengers are instructed on airplanes, first put on your own oxygen mask before trying to help others.

Mesothelioma Caregiver Duties

Mesothelioma caregivers are part of a care team made up of the patient, family and friends, and medical professionals.

A mesothelioma caregiver may have the following duties:

  • Driving to and from doctor’s appointments, tests, and treatments
  • Managing and giving medications
  • Coordinating cancer care
  • Managing side effects
  • Reporting problems
  • Informing family and friends of what is happening
  • Helping to make decisions on whether treatments are working
  • Gathering documentation, such as important contact information, health history, banking, wills, and power of attorney
  • Planning for financial, legal, and health insurance matters

The most common type of mesothelioma (pleural mesothelioma) has four stages, and peritoneal and pericardial mesothelioma are typically “staged” based on whether the cancer is localized or advanced. Depending on the stage, being a mesothelioma caregiver can involve different levels of help.

As the illness advances, caregiver duties may include:

  • Shopping for and preparing food
  • Helping the patient eat
  • Managing medical problems at home
  • Bathing, grooming, and dressing the patient
  • Helping to use the bathroom
  • Cleaning and doing laundry
  • Paying bills
  • Providing emotional support
  • Deciding when to seek medical help for new problems

Mesothelioma Caregiver Roles

Caring for someone with mesothelioma can be a full-time job — it can even be a 24/7 responsibility.

It is wise to seek mesothelioma caregivers support to:

  • Stay healthy themselves
  • Be good caregivers
  • Stay in their caregiving role

Ideally, family and friends will take on different roles to split up responsibilities, offer support, and provide the best care. A caregiver’s responsibilities typically depend on their relationship to the patient.

Spouses

Spouses often take the role of primary caregiver. Being a mesothelioma caregiver requires knowing who you can talk to and count on for help.

If family members don’t offer help, or if the help is not sufficient, spouses may turn to a circle of friends, church members, neighbors, or other support networks.

The primary caregiver is usually responsible for sharing information on the patient’s condition, needs, and care.

The role of leading a mesothelioma caregivers support team may include:

  • Looking for situations where help is needed
  • Making a list or calendar to keep shared responsibilities organized
  • Holding regular family meetings
  • Asking family and friends when and how they may be able to help

Children

Children are often a big part of a mesothelioma caregivers support team. It can be challenging for adult children to accept that their parents are not “invincible,” but it is important to step up. This is especially important when both parents are elderly.

Adult children may offer the following support:

  • Visiting regularly
  • Driving their parent to doctor’s meetings and taking detailed notes
  • Treating their parent to small luxuries, such as massages, manicures, and pedicures
  • Helping around the house and yard
  • Hiring outside nursing help
  • Reading stories and recalling memories

Siblings

In many families, siblings know each other very well. This can be an opportunity for a brother or sister to become an advocate for the mesothelioma patient, helping to keep dignity intact.

Siblings may also be able to recount fond childhood memories that no one else would know, providing great comfort to the mesothelioma patient as the end of life approaches.

Friends

Mesothelioma patients often have friends who are willing to help. For veterans, this may include the men and women who served with the patient in the past. These bonds are often unbreakable and can be a tremendous source of comfort.

At times, friends are not sure how they can help and may even be hesitant to offer. Staying in regular communication with a patient’s mesothelioma caregivers support team may be the best way for friends to begin.

Resources for Mesothelioma Caregivers

Being a caregiver is not easy. Fortunately, there are many resources that mesothelioma caregivers support teams can make use of.

Mesothelioma caregivers support resources include:

  • The American Cancer Society provides 24/7 support and offers services such as rides to treatment, lodging, and an online community.
  • The American Lung Association can assist with local support options.
  • The National Cancer Institute offers quality information for mesothelioma patients.

The only known cause of mesothelioma is exposure to asbestos. To assist with the financial aspects of mesothelioma caregiving, speaking with a qualified mesothelioma law firm may lead to compensation that can be used for patient care.

Education for Mesothelioma Caregivers

Becoming educated on your loved one’s condition can be the best defense in planning for the future. By knowing what to expect, being a mesothelioma caregiver may feel less stressful. Keep in mind, it is important to use trusted resources to get accurate information.

Reliable educational materials are available online from such organizations as:

  • American Cancer Society
  • American Lung Association
  • Mayo Clinic
  • National Cancer Institute
  • National Organization for Rare Disorders

When looking for resources to become more educated, especially online, there are many helpful questions to ask to ensure the information is accurate.

When assessing a mesothelioma caregivers support resource, ask yourself: 

  • Who manages the information?
  • What letters are at the end of the web address? Websites ending in “.gov” (run by the government) or “.edu” (run by universities) may provide the most current and reliable information available.
  • What is the original source of the information?
  • How current is the information?

Self-Care for Mesothelioma Caregivers

The importance of self-care can never be stressed enough. Being a mesothelioma caregiver can be extremely taxing, both physically and emotionally.

The American Cancer Society advises, “your own health and safety must come first if you want to keep helping your loved one.” 

Many caregivers believe that their needs aren’t as important as the patient’s, or they feel as though they do not have enough time to take care of themselves. However, caring for your own needs and desires can help provide the strength you need to carry on.

Some ways to recharge your mind, body, and spirit to make you the best caregiver you can be include:

  • Find time to relax
  • Spend at least 15-30 minutes per day doing something for yourself
  • Do not neglect your personal life
  • Maintain a regular routine
  • Ask for help
  • Understand your feelings
  • Join a support group

Caregivers should get professional help if they:

  • Feel depressed
  • Think about hurting themselves
  • Begin fighting with loved ones
  • Depend on alcohol or drugs

Tips for Mesothelioma Caregivers

Caregivers often find it difficult to balance taking care of a loved one with their own health and responsibilities.

There are many resources available that make being a mesothelioma caregiver easier to handle. The most important thing to understand is that you cannot do this alone.

Find a Support Group

Support groups provide a safe place for mesothelioma caregivers to talk about their challenges and feelings with others who understand. This can be a tremendous source of comfort and relief. Support groups can be chosen based on personal preferences.

Types of mesothelioma caregivers support groups include:

  • In-person support groups
  • Online support groups

Local, in-person groups can be found by asking the patient’s oncologist, while online communities are available on social networks like Facebook.

Take Care of Yourself

Your own health and safety must come first before you can properly take care of your loved one.

“If you are a caregiver, make a plan for self-care.” – The American Lung Cancer Association

Ask For Help

One of the most important things to understand about being a mesothelioma caregiver is that you should not try to do it all yourself.

The American Cancer Society warns, “caregiving alone for any period of time is not realistic.”

Caregivers should reach out to others and get them involved with the things that must be done to care for the mesothelioma patient. Setting realistic limits on what you can do is the best way to provide care.

Author:Stephanie Kidd

Editor-in-Chief of the Mesothelioma Justice Network

Stephanie Kidd

Stephanie Kidd works tirelessly as a dedicated advocate for the vulnerable and underrepresented. Stephanie worked as a copywriter for an agency whose focus was communicating safety procedures on construction work sites. With her extensive background in victim advocacy and a dedication to seeing justice done, Stephanie works hard to ensure that all online content is reliable, truthful and helpful.

Last modified: January 21, 2020

View 8 Sources
  1. American Cancer Society. “What a Cancer Caregiver Does.” Retrieved from https://www.cancer.org/treatment/caregivers/what-a-caregiver-does.html. Accessed on January 10, 2020.
  2. American Lung Cancer Association. “Lung Cancer Family and Friends.” Retrieved from https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/family-and-friends/. Accessed on January 10, 2020.
  3. Care.com. (March 20, 2018). “How to Help a Parent Who Has Cancer.” Retrieved from https://www.care.com/c/stories/5086/how-to-help-a-parent-who-has-cancer/. Accessed on January 10, 2020.
  4. Healthline. “10 Things to Add to Your Caregiver Toolkit.” Retrieved from https://www.healthline.com/health/caregiver-tools. Accessed on January 10, 2020.
  5. National Cancer Institute. “Advanced Cancer and Caregivers.” Retrieved from https://www.cancer.gov/about-cancer/advanced-cancer/caregivers. Accessed on January 10, 2020.
  6. National Cancer Institute. “Support for Caregivers of Cancer Patients.” Retrieved from https://www.cancer.gov/about-cancer/coping/caregiver-support. Accessed on January 10, 2020.
  7. National Cancer Institute. “Using Trusted Resources.” Retrieved from https://www.cancer.gov/about-cancer/managing-care/using-trusted-resources. Accessed on January 10, 2020.
  8. U.S. News & World Report. (May 23, 2017). “Advice for Lung Cancer Caregivers.” Retrieved from https://health.usnews.com/health-care/patient-advice/articles/2017-05-23/advice-for-lung-cancer-caregivers. Accessed on January 10, 2020.
Back to Top