Mesothelioma is a diagnosis that affects not only the patient but also the caregiver. When one person in the family is sick, everyone feels it; everyone is affected. One day everything is “ok” and the next day your life has changed; it is unexpected and it can feel traumatic.
Most often the caregiver is the one who takes on the role of the patient’s treatment manager. The one who makes appointments, manages medications, does the research, attends all appointments, takes notes, asks the questions and keeps family and friends updated on progress. However, life outside of the disease does not stop. “Regular life”, pre-mesothelioma, still goes on. You still need to pay bills, cook meals, clean the house, go to work or take care of children on top of your new role as caregiver and all the duties it entails. This can lead to what is known as caregiver stress. What does caregiver stress look like? How does it manifest itself?
It manifests itself in many different ways. For example, the caregiver feels fatigued, weighed down. They put the patient’s needs first and their own needs last. The caretaker often neglects their own health; cancelling their own doctor’s appointments, not exercising regularly, eating on the run or eating more comfort food. In addition, stress can affect one’s sleep. The caregiver has so much on their mind it’s often hard to “shut it off” in order to get to sleep. Poor sleep can lead to irritability and having less patience than you normally would.
In addition, caregivers spend a great deal of time emotionally supporting the patient, leaving caregivers feeling emotionally depleted and without much left for themselves. It is important to recognize and acknowledge that caregivers willingly and lovingly take on the caregiver role but it is not without an emotional price tag.
So, caregivers remember: pay some attention to yourselves, if for no other reason than to have enough stamina left to be a caregiver.