Mesothelioma isn’t just difficult for the person who has been diagnosed, it also takes a toll on the patient’s loved ones, especially the ones that step into the role of a caregiver.
The Role of the Caregiver
It’s impossible to stress just how important the role of the caregiver is to an individual who has been diagnosed with mesothelioma. Not only does the caregiver make sure the physical needs of the patient are taken care of, they also provide the patient with a great deal of emotional support.
When you realize that you’re going to have to act as a caregiver, there are some specific duties you need to be prepared to handle.
Health Monitoring – In many cases, the caregiver actively assists when providing feedback about how the patient responds to a specific type of treatment. The caregiver will also help make sure the patient is properly medicated and that any health problems or improvements are reported to the doctors.
Acting as a Companion – A mesothelioma diagnosis makes a patient feel like they’re all alone. The caregiver keeps the patient company and helps them communicate with friends and family who might not be able to visit.
Making Important Decisions – Many times the primary caregiver plays a key role when it comes to deciding how to handle everything from treatments, participation in clinical trials, end of life care, and legal matters.
The Caregiver’s Duties
Before you step into the role of caregiver, you need to be aware of the responsibilities you’ll have to handle. Many caregivers find that they have to handle:
- Basic care that includes things like bathing and feeding
- Booking appointments and arranging for transportation
- Making sure the proper medications are administered at the right times
- Monitoring and reporting changes in the patient’s health
- Dealing with the insurance company
- Handling legal and financial issues
If you have stepped up and become a caregiver, you have to understand that you don’t have to do it all. There are support groups that will help provide assistance when needed.
Understanding the Family and Medical Leave Act
As a patient’s mesothelioma worsens, or if they are recovering from a complicated treatment, it’s likely that the amount of care they need will make it impossible for a lone caregiver to manage the patient while also maintaining a steady job. The Family and Medical Leave Act of 1993 allows the caregiver to take as much as 12 weeks worth of unpaid leave to care for the patient without having to worry that they will lose their job.
Communicating with the Patient
Mesothelioma can trigger emotions and reactions from the patient that the caregiver has never experienced before. The caregiver needs to be able to adapt to these changes and be willing to communicate with the patient. If the patient is reluctant to speak to the caregiver about their current situation, the caregiver may want to enlist the aid of a spiritual counselor or a therapist who’s specially trained to handle such matters. In most cases, the patient is scared and nervous about what is happening. A common connection to laugh and share memories goes a long way.
Support is Available
Serving as the primary caregiver for a mesothelioma patient is an emotional experience. It’s important for the caregiver to take advantage of the various organizations and support groups that have the resources needed to help the caregiver deal with the wide range of emotions they will go through. The support groups share experience, provide advice, help caregivers manage anticipatory grief, and can make the caregiver feel less alone. Caregiver support can be found in person, via the phone, and online.
Take Care of Yourself
It’s not uncommon for the caregiver to get so fixated on tending to their loved one’s needs that they fail to think about themselves. What caregivers need to remember is that it’s impossible for them to really provide the patient with the type of care they need if the caregiver isn’t properly rested and tending to their nutritional needs.
If you find yourself stepping into the role of primary caregiver you should:
- Plan ahead and let your co-workers, family, and friends know what’s happening so they will understand the sudden changes in your availability and be able to lend a hand when needed.
- Learn as much as you can about both mesothelioma and caregiving
- Seek support for both you and your loved one
- Be willing to ask for help