New Roles Mean New Challenges for Mesothelioma Caregivers

Older couple talking to a caregiver

When a loved one is faced with a serious illness, it strikes fear into the hearts of all those who love that person.

We worry about those we love, but when someone gets sick, it is a whole new ball game. Who can take better care of a patient than someone who truly loves them?

When families are faced with serious illnesses, such as mesothelioma, one or more members of the family may step in and take on a new care provider role.

Most of us feel as though only we can provide the best quality of care for our loved one. Not that we are all trained and qualified nursing staff, but we feel this way because we have an emotional investment in our loved one, and we want to care for them.

Taking on New Roles

When my father was diagnosed with mesothelioma, my mother became his caretaker, and I took on a housekeeping role. She had many duties she fulfilled, including scheduling appointments, making sure he was following doctors’ orders, managing his chemotherapy port and just being available for emotional support.

She served as his full-time private nurse. Taking care of him made her feel useful. She felt as though being his caregiver expressed her love and devotion to him.

I took over with the household where she had left off. I cooked meals, maintained the housekeeping and did all the laundry. I was only 14, so some of the meals I concocted were more like somewhat edible science experiments.

I assumed that role because my parents needed me to fulfill those duties. I was also terrified of medical equipment and nursing tasks. I would go into another room any time the port was mentioned. I was scared.

Caregivers May Forget to Care for Themselves

These new roles sometimes consume caregivers.

In 2013, Korean researchers from the College of Medicine at Yonsei Cancer Center and the College of Nursing in Seoul conducted a research study and found that caregivers often neglect themselves. Results of the study showed caregivers may ignore their own appointments, forget to take their own medicine and can even develop health problems.

Our family members who need us as caregivers would never want us to jeopardize our own health for the sake of theirs. It is important to maintain your personal health and well-being while you are fulfilling a caregiver role.

If you are providing care for a family member, you may want to enlist the help of someone you can trust. So when you have an appointment, you can take the time off to attend to your own health.

It is important to maintain certain aspects of your own lifestyle and not become entirely consumed in caregiving. Go out for coffee with a friend sometime or catch a movie with the kids. As family members serving as caregivers, we must take care of ourselves while we take care of our families.

It’s crucial to be in good health if we intend to take care of someone else.

Masking Your Emotions Is Not Healthy

When our families endure, we endure. When they hurt, we hurt with them.

Because we are not just fulfilling a financial duty when we serve as a nurse, our hearts are deeply involved. When we take care of someone whose health is deteriorating, it can be very emotionally taxing.

Many times, we “put on a happy face” without thought to the cost of slipping on that mask. We are hiding our emotions to spare our loved one the agony of seeing us worry.

Stefan Diestel, renowned psychologist from the Liebniz Research Center for Working Environment and Human Factors at the Technical University of Dortmund in Germany, has conducted numerous research studies on nursing and caregiver behaviors.

Diestel calls the emotion masking behavior emotional dissonance. Pretending to feel happy or calm when we are experiencing extreme anxiety, fear and depression can be emotionally taxing. While we are exhibiting self-control as we regulate our own emotions, we are exposing ourselves to psychological strain.

The Healthy, Happy Face

Researchers from the University of South Australia claim there is an emotionally healthy way to hide our feelings.

When we fight through the tears and present a fake smile, we are merely surface acting. This creates feelings of inauthenticity — or hiding our true emotions from the loved one for whom we are caring.

Don’t think your loved one can’t spot a fake smile, either. According to Dr. Michelle Tuckey, senior lecturer and member of the Asian Pacific Center for Work Health and Safety, deep acting is an “active effort to align inner feelings and observable behaviors with expectations.” We don’t just suppress emotions; we change them.

Can you simply change emotions? Yes, it can be done. In her numerous research studies with professional nurses, Tuckey claims professional nurses may change their emotions constantly, often without realizing it.

Techniques for Regulating Emotions

Dr. Tuckey’s work in studying the nursing profession has revealed some of the various techniques nurses employ to regulate their emotions in a psychologically healthy manner, including situation modification.

Applying situation modification as a home caregiver is easy. If your loved one feels up to it, play some cards or board games. It can offer a change of pace and give you both some time to laugh a little.

Sometimes it is necessary for caregivers just to take a break for a moment. Even professional nurses take a lunch break. Don’t let feelings of guilt keep you from ever enjoying yourself. It is not healthy for you to carry the emotional burden of caregiving without ever taking a break.

When we take a break, we can reappraise the situation and concentrate on the good things. Focus on the family times that you can enjoy with your loved one. Even if your loved one is not feeling well, there are many activities they will still enjoy. Read books together or have a movie night.

One of the best things about being a caretaker is the newfound quality time you can devote to those you love.

Keep this in mind: You must be healthy to keep them healthy.

Melanie Ball lives in Kentucky. Her father, Richard Lloyd Barker, died of mesothelioma in 1993. She is pursuing a bachelor’s degree in psychology from the University of Phoenix.

  1. Rha, S., Park, Y., Song, S.K., Lee, C.E., & Lee, J. (2014 October 28). Caregiving burden and health-promoting behaviors among the family caregivers of cancer patients. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/25456972
  2. Schmidt, K. and Diestel, S. (2014, November). Are emotional labour strategies by nurses associated with psychological costs: A cross-sectional survey. Retrieved from https://www.researchgate.net/publication/260805844_Are_emotional_labour_strategies_by_nurses_associated_with_psychological_costs_A_cross-sectional_survey

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