If one of your parent, spouse or sibling has been diagnosed with mesothelioma, chances are you’ve taken on an active role in their care. Being a mesothelioma caregiver can be challenging, but this post was written to help you prepare and succeed in this new part of your life.
Becoming a Mesothelioma Caregiver
A mesothelioma diagnosis can bring large changes in the lives of diagnosed patients and their families. Word of a diagnosis may bring feelings of fear or confusion in all individuals affected. The news may also create new responsibilities among family members, with certain people moving into the caregiver role.
The term caregiver is given to someone providing emotional and physical support to a cancer patient—in this context, mesothelioma. Caregivers are usually unpaid family members who are not professionally trained but move into the role so the patient can spend more time at home.
Providing care for a person with mesothelioma may seem overwhelming at first, a feeling which is completely normal and expected. However, once both parties understand their roles and the types of support they will need to succeed, the somewhat negative circumstance can bring moments of clarity, hope and deep bonding.
Elements of Mesothelioma Care
Mesothelioma is a complex disease, which requires specialized care and treatment. As mentioned above, this reality may seem overwhelming for caregivers, but gaining a better understanding of the disease may help reduce this initial anxiety.
Depending on your family members’ personality, needs and capacity, as a caregiver, you may provide various types of support and care.
Diagnosis, Medication and Treatment
There are various challenges in accurately diagnosing mesothelioma from other types of cancer. Given that a proper diagnosis is essential to receiving an effective treatment plan, it may fall within your responsibilities to ensure the medical team is confident in their conclusions.
A large part of your new role will involve remembering, scheduling and driving your family member to their appointments and tests. You may also help with their medication, either by reminding them to take it or ensuring their prescriptions are refilled.
If part of their mesothelioma treatment plan involves chemotherapy or radiation, you may provide emotional or physical support during their treatment. If surgery is required, you may need to take a larger physical role in their care during recovery—such as feeding, dressing and bathing or taking care of their housework.
Communication With Friends, Family and Medical Professionals
You may be the primary communicator between your family member and their healthcare team, explaining medications and monitoring possible side effects or sharing concerns and needs. Other family members and friends will be worried and they may ask you questions or for updates.
If your family member feels better sharing their thoughts and feelings, your main role as a caregiver might be to listen and provide emotional support. This may involve helping your loved one make difficult decisions.
Potential Mesothelioma Lawsuit
If your family members’ diagnosis is due to workplace asbestos exposure, they may have the option to file a lawsuit against their employer or manufacturer. As the primary caregiver, you will most likely be involved in any legal proceedings.
Get Support Finding the Right Treatments
The Mesothelioma Help Guide is a FREE support resource for patients and families to help them better understand which treatment options will improve prognosis.
Tips for Succeeding as a Mesothelioma Caregiver
Acting as the primary mesothelioma caregiver for your loved one will come with challenges. Filling this role can be both physically and emotionally draining. You may also be so focused on providing care that you forget to take care of yourself.
Below are a few tips to help you maintain your strength and spirits while you fill this essential role in your loved one’s mesothelioma journey:
Ask for Help
Between getting your loved one to and from their appointments, monitoring their medications and supporting their emotional health, your external responsibilities may fall by the wayside. Ask other family members for help with their care, or touch base with neighbors or friends for support with daily chores.
Nourish and Exercise Your Body
Taking time to ensure you are eating nutritious meals and participating in daily exercise will ensure you are in the best possible physical and mental state to provide care.
Seek Outside Support
Acting as a mesothelioma caregiver can put you in a leadership role and enable you from feeling comfortable sharing your own fears and thoughts surrounding your loved one’s diagnosis. If this is the case, it may be a good idea to talk to a professional therapist or counselor.
It is important to understand your own personal needs during this time to ensure you are able to provide the best possible care for your family member. If you are looking for further support with this new role, please speak to one of our Patient Advocates by calling (800) 584-4151.