What Is a Mesothelioma Caregiver?
A mesothelioma caregiver is someone who assists a patient with everyday household tasks and medical care. A caregiver can be a family member, friend, neighbor, or a person you hire. Usually, a spouse or adult children take on caregiving roles after a cancer diagnosis. Many families split caregiving responsibilities among family members.
In 2015, the National Alliance for Caregiving and AARP counted about 43.5 million active caregivers in the U.S.
Caregivers are an important part of a patient’s cancer care team. They typically interact with the person daily. As such, they know which symptoms are causing discomfort and how the patient reacts to treatment.
Caregivers may attend to someone with mesothelioma in their home, a hospice clinic, a residential facility, or other long-term care centers.
Mesothelioma Caregivers: What to Expect
Caregiving for someone with an advanced stage of cancer includes a similar set of duties. Generally, mesothelioma caregivers can expect to take over some responsibilities (like doing laundry) and assist the patient with others (like taking their medicine).
Mesothelioma is an aggressive form of cancer and often causes painful side effects. A study of patients with malignant mesotheliomas revealed substantial impact on daily life. Tumors and their treatment disrupt normal routines. Consequently, many patients can no longer work or oversee family responsibilities.
However, household bills and errands must still be managed. Caregivers relieve the burden of some of these tasks. They can expect to help with mesothelioma and treatment activities like:
- Calling emergency services when needed
- Coordinating patient’s care
- Decide whether treatment is working
- Giving medication and at-home treatments
- Keeping other family members updated
- Managing side effects
- Noting changes in mood and mental health
- Reporting problems to doctors
- Taking notes during doctor visits
- Tracking prescriptions, tests, and treatments
- Transporting patient to appointments
Also, caregivers may expect to assist with everyday tasks like:
- Babysitting or organizing daycare
- Bathe, groom, or dress patient
- Caring for pets
- Clean home
- Do dishes or laundry
- Helping patient eat
- Help patient use the bathroom
- Grocery, home, or clothing shopping
- Pay bills or track bill payments
- Preparing meals
Caregiver Depression and Compassion Fatigue
The average age of caregivers in the U.S. is about 49 years old. These individuals spend about 24.4 hours each week. However, one in four caregivers devotes at least 41 hours per week to giving home care.
1 in 4 caregivers devotes at least 41 hours per to providing care.
Over time, people may begin to feel “rundown,” easily frustrated, or mentally exhausted from caregiving. When these feelings start to interfere with providing care, they may be a symptom of compassion fatigue. Compassion or caregiver fatigue is a type of stress disorder caused by experiencing another person’s distress.
Talk to a therapist or mesothelioma counselor if you begin to feel high levels of tension and anxiety from caregiving. Other symptoms might include:
- Continuous anxiety or depression
- High blood pressure
- Insomnia or sleep problems
- Loss of appetite
- Mood changes
- Unexplained weight loss
- Weakened immune system
- Wounds healing slower
Tips for Mesothelioma Caregivers
Caregiving for a loved one with cancer can be challenging but fulfilling. The type of support you provide depends on your ability and your loved one’s needs. Follow the below tips to care for a loved one with mesothelioma.
Tips to make mesothelioma caregiving easier include:
- Ask for help when you need it.
- Bond with your loved one with cancer.
- Keep an appointment calendar and to-do list to stay organized.
- Seek training or education to learn more about cancer and home care.
- Set up a routine and stick to it.
- Talk to hospital social workers or members of the cancer care team for support.
Your health as a caregiver is just as important as the patient’s health. For instance, becoming ill or injured could affect your ability to help. You may lose focus during caregiving tasks that could impact the patient’s health.
Each day, remember to keep your health and mental wellbeing in mind.
Tips to help mesothelioma caregivers take care of themselves include:
- Eat healthy foods with lots of nutrients.
- Find an outlet to talk about your thoughts and feelings.
- Get plenty of sleep.
- Join a support group.
- Maintain your health and exercise.
- Make time to relax.
- Watch for signs of anxiety and depression.
- Write about your feelings in a journal.
Many adult children live in another state, apart from their parents. When a parent is diagnosed with mesothelioma, they may have to travel and help. Long-distance caregiving can be difficult, expensive, and time-consuming. Moreover, feelings of guilt and stress can be high when people must leave responsibilities at home.
Long-distance caregivers can remain active in their loved one’s care by:
- Clean or arrange for the cleaning of home
- Get in touch with neighbors or nearby relatives for emergency contacts
- Keep an updated list of all medications, tests, and treatments
- Make sure you can be reached easily
- Order groceries to be delivered online
- Organize chores and errands to be completed
- Plan for eventual crises
- Plan to-do lists before you visit loved ones
Mesothelioma Caregiver Grants and Support
Being a mesothelioma caregiver can be a full-time job. Yet, many people were employed before providing care for a loved one. Often, they worry about keeping their health insurance and other work benefits.
Fortunately, mesothelioma caregiver grants and support are available from several resources. The VA’s Program of Comprehensive Assistance for Family Caregivers provides education and training, counseling, a monthly stipend, and health insurance for eligible caregivers. Veterans with a service-connected disability and a rating higher than 70% can apply for VA caregiver assistance here.
Eligible VA family caregivers include adults over 18 who are a:
- Stepfamily member
- Extended family member
- Someone who lives full-time with the Veteran
Likewise, the VA’s Fisher House Program offers free lodging to veterans and their caregivers traveling to a VA medical facility. The American Cancer Society also maintains several programs and services to educate caregivers and provide emotional support.
Some caregivers are also eligible for Social Security benefits based on their relationship with the disabled individual. For example, the spouses of those who qualify for Social Security disability benefits can receive up to 50% of the benefit amount.