Much of the attention associated with mesothelioma goes to the person who has this rare and aggressive cancer. The patient is the object of many questions and discussions, ranging from prognosis and treatment to finances and legal options.
While the victims of mesothelioma are the primary source of concern, they are not the only ones whom this disease effects.
Mesothelioma caregivers support and comfort their loved ones during the immediate days following diagnosis and continue doing so throughout their treatment. Approximately 3,000 people in the U.S. each year are diagnosed with mesothelioma, and they all could use someone to help monitor their health, provide companionship and make difficult decisions. Other typical responsibilities of a mesothelioma caregiver include:
- Feeding, dressing and bathing the patient
- Running the household
- Communicating with family members and friends about the patient’s status
- Scheduling appointments and managing treatment medication
- Managing finances, insurance and legal issues
If you are a mesothelioma caregiver, you may have numerous questions regarding your role in treatment, legal issues and, in general, just being a strong and supportive presence for your loved one. These 11 questions are some of the most common from mesothelioma caregivers, and the experts at Mesothelioma Guide have an answer for each.
Who Can Be a Caregiver?
According to the American Cancer Society, caregivers can be anyone not paid to provide care to a person struggling with an illness. This person could be a spouse, child or close friend of the patient. However, the caregiver of a mesothelioma patient is often a direct relative.
Regardless of who it is, the caregiver’s responsibilities can be overwhelming. These loving, courageous people should not sacrifice their own health and happiness while prioritizing another’s — and should recognize that they do not need to carry the responsibilities alone. Mesothelioma caregivers have numerous resources to help them care for their loved one.
How Should I Prepare for Being a Caregiver?
Research mesothelioma. Read about standard mesothelioma treatment methods and emerging options. Learn about each type of the disease — pleural, peritoneal and pericardial — and which one your loved one has. Become knowledgeable about how the disease forms, spreads and attacks the body. Attend doctor visits and ask questions, from basic ones to in-depth inquiries.
By understanding mesothelioma and becoming a subject-matter expert, you can help your loved one and serve as a source of information for the rest of your family.
How Do I Discuss My Loved One’s Mesothelioma Diagnosis With Other Family Members?
Each person will react differently to the news of a loved one’s mesothelioma. The conversations will likely be difficult, and they’ll require a brave person to instigate them. However, they are necessary; honesty is the best approach when relaying news of a loved one’s disease.
Depending on the age of the family member, you can vary the talk by omitting or including specifics about mesothelioma. For instance, if you’re speaking to a sibling or grown child of the patient, they’ll likely already know about cancer and will want more information about mesothelioma, such as development, treatment and prognosis. If you’re speaking with a young child or grandchild of the patient, they’re not likely to ask specific questions or need to know more information. Explaining that their parent or grandparent is sick is often enough, but you should also assure them that you’ll answer any questions they may have.
How Do I Handle My Regular Employment While Caregiving?
Caregiving for someone often is the equivalent of a full-time job, and it requires someone to spend the majority of the day at home with the patient. When the disease progresses, more care and attention is needed. If you’ve become the caregiver for a mesothelioma patient, you’ll likely worry about your employment status as you need more time tending to the patient’s requirements.
The Family and Medical Leave Act of 1993 provides many caregivers with protection from losing their regular employment. The law allows for up to 12 weeks of unpaid time off. This time covers for travel to appointments, caring for patients following procedures and staying at home when the disease progresses to a point where the patient cannot be left alone.
How Should I Plan for and Respond to Emergency Pain Situations Involving the Patient?
Pain management is an integral part of mesothelioma treatment. Ask your loved one’s doctor what to do in an emergency pain situation, such as which medication to provide and how to ease their pain. Preparing for these likely occurrences will allow you to take action right away.
If the situation requires a medical expert, then contact the patient’s primary mesothelioma specialist. If they are not available, bring your insurance information and the names of everyone on your loved one’s treatment team to a nearby hospital.
What Are the Best Ways to Provide Comfort to the Patient?
Mesothelioma can cause severe pain, and some ordinary tasks will become more difficult for the patient as the disease worsens. Routine actions such as putting on clothes or tying shoes may be taxing for your loved one. Any movements that strain muscles near the tumors will be a challenge. Help your loved one with these tasks and think of alternatives to reduce the amount of pain they experience.
Being a positive and helpful presence is often enough. Spend time with your loved one, tell them about your day and life, and share memories or activities with them. There is no need to run from their mesothelioma diagnosis and prognosis, but your loved one likely won’t want their disease to cast a shadow over your and their lives all the time. Talking about anything other than mesothelioma may raise the patient’s spirits.
Should I Accept Help From Friends and Family?
Whenever the job of caregiving becomes too much, don’t just wait for someone to help. Ask for it. Many caregivers feel the entire burden is on their shoulders. Don’t be too proud to reach out for assistance.
If someone wants to cook dinner for you and your loved one, be grateful. If someone wants to help with day-to-day tasks related to caregiving, show appreciation. Caregiving is often a team effort, and you should not isolate yourself from your and your loved one’s closest allies.
How Can I Find Balance and Routine Despite My Caregiving Responsibilities?
Remember to prioritize your own needs in addition to those of your loved one. Take breaks from caregiving and do activities you enjoy. Relax when you need to.
If the responsibilities are too overwhelming, find help. Respite care is temporary or short-term relief for caregivers — either paid or volunteer. This help could also come from another family member acting as a substitute caregiver, even for a few hours. Finding another person to help with caregiving allows you to take a day — or half day — to yourself.
The role of caregiver can be stressful and overwhelming. When you learn of your loved one’s mesothelioma diagnosis and realize you’ll be their primary caregiver, take some time to cope with the many emotions you’ll inevitably feel.
How Can I Ensure My Physical Health Doesn’t Deteriorate?
Caregivers sacrifice a lot of their own time and energy for the patient’s wellness. Often, these sacrifices result in the selfless person taking less care of themselves. You as a caregiver should not push your physical health into the background while upholding our caregiver responsibilities. Maintain a healthy diet, exercise regularly and prioritize getting a sufficient amount of sleep.
Don’t be unselfish to a fault!
What Are Ways I Can Manage My Mental Health?
Another frequent sacrifice of the caregiver is their mental health. Many people who help patients of aggressive diseases endure massive amounts of stress and struggle with anxiety and depression.
If your loved one’s prognosis starts poor or worsens in time, you may experience grief as you psychologically prepare for your loved one’s passing. This emotion is called anticipatory grief, a phenomenon most caregivers experience. Many caregivers assume responsibility for their loved one’s health, which is a dangerous mentality. Remember to focus on what you can control, which includes your loved one’s happiness and comfort but not always their prognosis.
Who Can I Turn to for Additional Help?
There are several support groups — in person, over the phone or online — specifically for mesothelioma caregivers. Do not shy away from seeking private counseling or group therapy as an outlet to discuss your caregiver role.
If you’re a caregiver for a mesothelioma patient and would like to talk with someone about your experience or concerns, Mesothelioma Guide can help. Our patient advocate and registered nurse, Jenna Campagna, has helped numerous caregivers through difficult times. Contact her at email@example.com with any questions you may have.