What Does It Mean to Be a Mesothelioma Caregiver?

Who Can Become a Caregiver?

While professional caregivers are paid to provide care, an informal caregiver is an unpaid individual who assists another person, typically an ailing loved one, with their daily life and treatment needs. Serving as a caregiver for someone with mesothelioma (a cancer of the lung, chest, or heart cavity caused by asbestos exposure) can become an overwhelming and isolating task, especially if you don’t have caregiver training due to the intensity of the symptoms caused by cancer cells found in the lung, chest, or heart cavity. During this time, caring for yourself becomes as important as caring for your loved one.

Caring for Someone With Mesothelioma

Becoming a primary caregiver for someone with mesothelioma can be time-consuming and emotionally draining. Exposure to asbestos for prolonged periods of time can damage the lung, chest, and heart cavities, making even breathing painful. As such, many mesothelioma patients are unable to adhere to old routines. Subsequently, the average family caretaker spends approximately 25 hours a week providing treatment and care.

You will inherit responsibilities and decisions you probably never anticipated including end-of-life preparations (e.g., making funeral arrangements ), hospice care (e.g., cleaning lung intubation tubes), and legal responsibilities (e.g., power of attorney). If your loved one elects to discontinue treatment or opts for a DNR order (do not resuscitate), you will likely inherit the responsibility of ensuring the administrative aspects are handled.

Below is a list of tasks you can expect to take on when serving as a mesothelioma caregiver.

• Assisting with daily activities, such as feeding, bathing, and housekeeping
• Transporting the patient to and from medical appointments
• Administering and tracking medication
• Monitoring and reporting any changes in overall health
• Working with the cancer care team to ensure you understand all at-home medical duties
• Managing financial, insurance, and legal matters
• Working with the individual and their legal team to determine the source of their asbestos exposure

In some cases, taking care of a loved one who is struggling with a terminal illness requires more time than your normal life may permit. The Family and Medical Leave Act (FMLA) can help if you need to take a temporary leave of absence from work.

Caring for Yourself

It’s crucial to take time for yourself when caring for someone else. You may feel guilty or selfish, but without caring for yourself, you run the risk of burnout and exhaustion, also referred to as compassion fatigue. Eventually, this can hinder the quality of care you are able to provide to your loved one.

8 ways mesothelioma caregivers can care for themselves:

1. Take breaks when you feel overwhelmed.
2. Make sure to stay nourished. Eat well, exercise, and get enough sleep.
3. Talk to a counselor.
4. Join a caregiver support group.
5. Take time for things you enjoy.
6. Stay organized.
7. Educate yourself about mesothelioma and caregiving.
8. Ask for help — don’t be afraid to seek support when you need it!

It’s OK to Grieve

Sometimes called anticipatory grief, caregivers experience a sense of loss of the person’s former self before they have passed away. It is difficult to watch someone you love lose their independence and ability to take care of themselves, especially when end-of-life arrangements are in the back of your mind. In some cases, caregivers are spouses or family members (i.e., potentially at-risk of secondary exposure). Financial and legal stressors can make the task all the more challenging.

Depression, guilt, and anger are all understandable feelings to experience as a caretaker. You may feel like you’re losing your own sense of freedom, or experience an inner struggle as you try to adapt to the new relationship you have with your loved one. Keeping a journal, talking to a friend or counselor, and getting involved with support groups can all help to alleviate the stress and hopelessness you may feel during this hard time.

Support for Mesothelioma Caregivers

There are many organizations that provide empowerment and support to mesothelioma caregivers. Getting involved can help you feel less isolated since you’ll be joining a community of people who understand what you’re going through and who can offer relevant feedback and suggestions for the challenges you are facing. Support groups are often available in-person or online.

Mesothelioma caregiver support groups and resources:

• I Had Cancer
• Cancer Support Community
• Cancer Hope Network
• Inspire
• MD Anderson Cancer Center
• The American Cancer Society
• The Family Caregiving Alliance

Hospitals, social workers, and religious organizations may be able to provide more information on local or online support groups for those exposed to asbestos and their loved ones. Facebook is another online community well-suited for mesothelioma caregivers seeking remote support.