The role of the caregiver is an underestimated position when someone is ill. With a serious rare cancer diagnosis like malignant mesothelioma, the caregiver is a vital participant in the team. When does one begin to assume the role of the caregiver? Who decides who will take this role? Usually the caregiver is someone who has a close relationship with the person diagnosed, a wife, husband, a significant other, an adult child of the patient. Statistically it is usually a woman who assumes this role.
The responsibilities that come with this role can be overwhelming. It is a difficult role as it can affect the caregiver physically, psychologically, and emotionally. Most people are unprepared for this new all-encompassing role.
The number of individuals who at one time in their lives will assume a care giver role is staggering. According to the National Alliance for Caregiving in the U.S. and AARP, there are 35.2 million Americans who provided unpaid care to an adult 50 years of age and older within the last year.
For caregivers of mesothelioma patients, the challenges can be daunting. It can start with educating yourself about a rare disease. Getting familiar with medical words and phrases that are as difficult to pronounce as they are to understand. Accompanying their loved one to many different appointments, traveling to consultations, taking notes, assisting with physical care- bathing- grooming. Logistically organizing appointments, lodging, medications, all while emotionally supporting your loved one.
For the caregiver, mesothelioma diagnosis and the havoc it reeks can become a focal point of your life. The diagnosis can alter your life irrevocably as well as the person diagnosed. In addition to these endless tasks there is the difficult conversations that must be had. What are the patient’s wishes? What are their goals of treatment, their fears? What do they want? The answers might not be clear, but the topic has been addressed and it is on the table.
Unfortunately, there is no set of rules that one can follow to become a caregiver. In some ways it is on the job training whether you are ready or not.
As important as the role of caregiver is to a person diagnosed with malignant mesothelioma, the vital part for the caregiver has to include taking care of themselves. Over the years we have seen fantastic caregivers who forgot about themselves. They have suffered and continue to suffer long lasting effects of that decision.
On the Family Caregiver Alliance website, there is a page dedicated to care givers self-care. Some of the points are things that we see every day with caregivers of mesothelioma patients. Some caregivers learn so much about mesothelioma that they become experts. Another suggestion is to get support. There are support groups available, talk to people if support groups do not interest you. Forgive yourself -no one is perfect and no one no matter who you are can take care of someone 24/7 without a break. Allow time for yourself. You had a life before this diagnosis. Allow yourself time away to recharge. One of the most important points they make is to change guilt to regret. Guilt is you did something wrong, regret is that you are in a difficult situation and sometimes you have to make difficult decisions, but they are not wrong.
Care-giving is challenging and all encompassing, remember to be kind and forgiving to yourself and to take care of yourself.