Mesothelioma Caretaker Burnout: How to Spot it, and What to do About it

Caring for a loved one with mesothelioma is a huge undertaking, with many physical, emotional, and financial demands. Caretaking can be very rewarding, allowing caretakers to show up for their loved one when they need them the most, but it can also be incredibly difficult, in ways that become increasingly taxing over time.

Caretakers are often expected to be on call to tend to their loved ones 24/7, providing essential support through complete lifestyle, routine, and dietary changes as well as the symptoms of mesothelioma and mesothelioma treatment. Mesothelioma caretakers often take on the burden of medical decision making, setting appointments and coordinating a wide range of providers to ensure that their loved one is receiving the best possible care. Many caretakers take on this tremendous burden—itself a full-time job—while continuing to work, care for their children, and maintain their household, among other responsibilities.

At the beginning of a mesothelioma journey, caretakers may be more hopeful, energized, and on point. Endorphins are high, and the caretaker often has reserves of energy and resources they can rely on to get them through any difficulties. The complete selflessness demanded of mesothelioma caretakers may be easier to maintain in this beginning phase.

However, many caretakers hit a point where their energy, resources, and hope start to wane, and it starts getting hard to see the light at the end of the tunnel. They may begin to experience a deep physical, mental, and emotional exhaustion, buckling under their many stressors, responsibilities, and demands.

This is mesothelioma caretaker burnout, sometimes referred to as “compassion fatigue”. It is very common among mesothelioma caretakers, and is essential to identify and address as soon as possible. If left unaddressed, burnout can be highly detrimental to a caregiver’s health and wellbeing, and can prevent them from effectively caring for their loved one.  

What are the symptoms of mesothelioma caregiver burnout?

Burnout may present differently in different caretakers. However, common signs and symptoms include:

• Fatigue and ongoing physical, mental, and emotional exhaustion
• Somatic complaints (i.e., headaches, body pains, gastrointestinal issues, etc.)
• Increased irritability, impatience, and anger
• Sadness, depression, and loss of hope
• Feelings of helplessness and inadequacy
• Reduced self-esteem
• Anxiety, fear, and panic
• Denial and unrealistic expectations
• Depersonalization and detachment
• Mood swings and inability to control emotions
• Loss of interest in previously enjoyable activities
• Social isolation and withdrawal
• Changes to sleep and appetite  
• Self-medication, especially with food, drugs or alcohol
• Lack of self-care and neglect of one’s own needs

What causes mesothelioma caregiver burnout?

The primary cause of mesothelioma caregiver burnout is too much long-term stress and neglect of one’s own needs without sufficient support or relief.

The physical symptoms mentioned above are the reflection of that stress and self-neglect on the body. These are often the first warning signs of mesothelioma caretaker burnout, but are frequently ignored by caretakers, who often feel they need to power through. The emotional and psychological symptoms above are often related to the caretaker completely ignoring their own emotional needs to care for their loved one, and to the unique psychological and emotional demands related to caring for someone with mesothelioma. This, along with the logistical demands of caretaking, can lead to the social and interpersonal symptoms of mesothelioma caretaker burnout—i.e., withdrawing from friends and family.

Additional contributors to burnout may include stressors such as:

• Role confusion: The strain of shifting roles with a loved one (i.e., from husband and wife to caregiver and patient), which can cause confusion, interpersonal stress, and overwhelm.
• Unrealistic expectations: The tendency of caretakers to feel solely responsible for things they could not possibly handle on their own. Similarly, burnout may be exacerbated when a loved one does not improve despite a caretaker’s diligent efforts.
• Resource strain: The extreme stress on resources (i.e., time, money, skills, and energy) caused by mesothelioma can leave caretakers with less than they need to care for their loved one, often contributing to burnout.

I think I have mesothelioma caretaker burnout. Now what?

Identifying the signs of burnout is an essential first step for caretakers. Once you have taken that step, the most important thing you can do is focus on getting the rest and support you need to restore some of your exhausted resources and energy. You can do this in many ways, including:

• Consulting your loved one’s mesothelioma care team for resources. Your loved one’s care team will likely have resources to help you with your caretaker burnout, and may also be able to connect you with additional financial and social resources.
• Making realistic goals and knowing your limits. Recognize that you may not be able to do everything you want or feel you need to do for your loved one, and set reasonable expectations for yourself.
• Asking for help and dividing labor. Now is the time to ask for help from your community—be it friends, family, members of religious, neighborhood, or affinity groups, or charity organizations—in caring for your loved one. Consider making a list of tasks you need to delegate so people know how they can help.
• Considering professional help. Some caretakers need professional assistance, such as respite care (offering relief care for a few hours), and care from home health aides. Caretakers should look into the ARCH National Respite Network and Resource Center for more information.
• Making time for self-care. Mesothelioma caretakers should ensure that they are caring for themselves, getting enough sleep and regular breaks, maintaining healthy diet and exercise, and keeping up with their physical and mental health.
• Spending quality time with others—and with your loved one—doing things you enjoy. Burnout often includes the loss of important relationships and social bonding time. Caretakers should nurture other relationships in their lives, and may consider spending time with their loved one outside of the caretaking dynamic doing something they both enjoy, such as watching movies together.
• Talking about your feelings. Many people with mesothelioma caretaker burnout find it deeply helpful talk about their feelings with someone who understands. This can be done with the help of a friend or relative, a mesothelioma/caretaker support group, and/or a mental health professional.

Are you or a loved one looking for more information about mesothelioma lawsuits in Kentucky and the surrounding area? Call (855) 385-9532 to learn more.