Mesothelioma Caregiver Support

If your loved one has malignant mesothelioma, it’s normal to want to do everything you can to help them recover and feel comfortable. As a mesothelioma caregiver, it’s important that you seek support to reduce stress and avoid burnout. You can feel more supported by sharing care duties with family and friends, joining a mesothelioma support group, and practicing self-care.

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Caring for Someone With Mesothelioma

Caring for a loved one with mesothelioma — be it your spouse, parent, friend, or another relative — may feel like a full-time job.

People diagnosed with mesothelioma not only need expert medical care, but they may also need help coordinating appointments, traveling to and from their cancer treatment center, and even doing daily household activities like tidying up or shopping for groceries.

If you are a mesothelioma caregiver, it’s normal to feel overwhelmed, exhausted, and sad — especially without help from others.

“[It was] very tough on my family. Very hard on my kids. Hard on all of us. It changes your life. Cancer changes everybody’s life.”

– Mary Jane, Mesothelioma Patient

For this reason, it’s important to seek support from loved ones, friends and community members, support groups, and other organizations. This ensures both your loved one and you are receiving the best care possible.

Tips for Mesothelioma Caregivers

If you are new to caregiving, or if you’re feeling burnt out, the following tips can help you manage your stress — and your loved one’s health — more effectively.

Prepare for Caregiving

After your loved one has a confirmed mesothelioma diagnosis, ask their doctor about what your role will be as a caregiver. A mesothelioma doctor can give you a better idea of how to prepare and how you can help.

Additionally, becoming educated on your loved one’s condition can help you know what to expect as you serve in this caregiving role.

You can learn about mesothelioma from the:

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

close up shot of an elderly couple's hands

Join a Mesothelioma Support Group

A mesothelioma support group brings you together with other mesothelioma patients and caregivers. These groups also provide a safe place where you can speak about your emotions and challenges.

Mesothelioma caregiver support groups meet:

  • In-person
  • Online
  • Over the phone

In-person groups can be found by speaking to an oncologist (cancer doctor), while online groups are available on social media sites like Facebook.

Practice Self-Care

The importance of self-care cannot be stressed enough as you support someone with cancer. By caring for yourself, you can recharge and, in turn, provide more effective assistance to your loved one.

Ways practice self-care as a mesothelioma caregiver include:

  • Exercising regularly
  • Finding time to relax
  • Following a regular schedule
  • Maintaining a social life
  • Understanding your feelings

You can also reach out to a mental health professional who can help you understand your emotions and cope with the experience.

“Your own health and safety must come first if you want to keep helping your loved one.”

– The American Cancer Society

Ask for Help From Others

The American Cancer Society (ACS) strongly encourages mesothelioma caregivers to work with friends, family, and even professionals to see if they can take on a portion of your caregiving duties. There is no shame in getting help.

For example, you can ask a trusted relative or friend to pick up groceries or do other household tasks while you take your loved one to a doctors’ appointment. You can also look into getting an in-home nurse or aide if you can’t provide full-time care.

If you have questions as you care for someone with mesothelioma, we can help. Call a Patient Advocate at (888) 360-4215 to get connected to experienced nurses and other care providers.

Mesothelioma Caregiver Roles

A great way to get support as a mesothelioma caregiver is to split up responsibilities with others. This strategy allows the patient to get the help they need while preventing one person from doing all the work.

Below, learn about different responsibilities loved ones may take on when caring for someone with mesothelioma.

Spouses

Spouses often take the role of primary caregiver, leading the mesothelioma patient’s care and recruiting others to help.

Spouses may have to:

  • Ask family and friends when and how they may be able to help
  • Share information on the patient’s condition, needs, and care
  • Make a list or calendar to keep shared responsibilities organized
  • Hold regular family meetings and provide updates

If other family members can’t provide mesothelioma help, spouses can turn to friends, church members, or neighbors.

elderly woman attending to her husband in a hospital bed

Children

Adult children are often a big part of a cancer care team, particularly if the mesothelioma patient and their spouse are elderly.

Children may offer support by:

  • Visiting regularly
  • Driving their parent to doctor’s meetings and taking detailed notes
  • Helping around the house and yard
  • Hiring outside nursing help

If the mesothelioma patient is not married or their spouse cannot provide care, grown children may take on the role of primary caregiver.

Siblings

Close siblings can offer emotional support to those fighting mesothelioma. For example, siblings may be able to recount fond childhood memories that no one else would know, providing great comfort to the patient.

Siblings can also serve as caregivers if the patient’s spouse and children are unable to do so, or if they simply need a break.

Parents

While mesothelioma mainly affects those over the age of 70, younger mesothelioma patients can rely on their parents to provide care. If the patient is married, parents can support the spouse’s caregiving duties. In other cases, a parent may even serve as a primary caregiver.

Other Relatives and Friends

Mesothelioma patients often have friends or other relatives who are willing to help with care. For veterans with mesothelioma, this may include the men and women who served with the patient in the past.

At times, friends and relatives may not be sure how they can help. They can start by staying in regular communication with a patient and their mesothelioma caregivers.

Answers to Common Caregiver Questions

It’s natural to have questions if you are new to mesothelioma caregiving. Find common questions — and answers — below.

What duties might a mesothelioma caregiver perform?

Caregiving duties can vary depending on the patient’s needs. Your loved one may need more involved care if they have late-stage mesothelioma than if it is in the early stages.

As a caregiver, you may have to:

  • Drive patients to and from doctor’s appointments
  • Locate the best cancer center for your loved one
  • Give medications
  • Manage Medicare, Medicaid, and other health insurance
  • Prepare food and help the patient eat
  • Coordinate treatment plans
  • Bathe and dress the patient
  • Monitor quality of life
  • Navigate end-of-life care

young woman caring for elderly man in wheelchair

What should I expect when caring for a mesothelioma patient?

You should expect your caregiving role to change over time. At first, you may just provide moral support until mesothelioma treatment starts. From there you might have to help your loved one through the recovery process and manage any lingering symptoms.

You can also expect to feel both rewarded and challenged. Caring for someone with mesothelioma can be incredibly taxing, but it can also strengthen your bond.

What are some signs of caregiver stress?

  • Chronic exhaustion
  • Difficulty sleeping
  • Disconnecting from others
  • Irritability and forgetfulness
  • Increased rate of illnesses
  • Losing interest in hobbies

It’s important to note these signs early on and take action, whether by taking a break or getting professional help. Stress and burnout can take a toll on your health and your quality of care.

Resources for Mesothelioma Caregivers

As you provide care for someone with mesothelioma, remember that there are tools available to make the process easier. You can access resources to cover travel expenses, medical bills, and other costs.

Mesothelioma care resources include:

  • Free or low-cost travel to treatment
  • Lodging for overnight stays far from home
  • Compensation through legal claims and asbestos trust funds
  • Benefits and medical care from the U.S. Department of Veterans Affairs (VA)
Mesothelioma Support Team
Reviewed by:AnnMarie Rotan, LCSW

Licensed Clinical Social Worker

  • Fact-Checked
  • Editor

AnnMarie Rotan is a Licensed Clinical Social Worker (LCSW) with over two decades of experience in the health care field — which includes hospital, outpatient clinical, home health, and mental health services. She also brings experience from the classroom as a professor, educating students in social work. Currently, she is an independent contractor for a home health agency, hospital, and teletherapy provider.

Stephanie KiddWritten by:

Editor-in-Chief

Stephanie Kidd grew up in a family of civil servants, blue-collar workers, and medical caregivers. Upon graduating Summa Cum Laude from Stetson University, she began her career specializing in worker safety regulations and communications. Now, a proud member of the American Medical Writers Association (AMWA) and Editor-in-Chief of the Mesothelioma Justice Network, Stephanie serves as a voice for mesothelioma victims and their families.

View 9 Sources
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