Mesothelioma Caregivers
Page Medically Reviewed and Edited by Anne Courtney, AOCNP, DNP This page has been fact-checked by a Doctor of nursing practice specializing in Oncology and has experience working with mesothelioma patients.
Sources of information are listed at the bottom of the article. We make every attempt to keep our information accurate and up-to-date.
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Mesothelioma caregivers may be family members or professional healthcare workers, and they provide valuable services for people who are ill. They may do household chores or provide personal or even nursing care. Caregivers may work in health care facilities or with patients on a residential or outpatient basis.
What Is a Caregiver?
A mesothelioma caregiver assists someone with cancer who cannot fully care for himself. Caregivers are one part of a complete cancer care team. They usually provide basic daily care, such as helping the patient bathe and take the right medications.
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A caregiver may also help make decisions about care and treatment. As a part of the whole team, caregivers must also communicate with doctors and other medical professionals about the patient’s symptoms, treatment reactions, and other issues.[1]
Family Caregivers
For many people struggling with an illness, the primary caregivers are family members and friends. There may be one primary caregiver, such as a spouse or adult child, or there may be many hands caring for an ailing loved one.
Many people rely on family for caregiving for a variety of reasons:
- It may feel more comfortable to have loved ones providing basic care.
- The caregivers themselves may choose to assist because of a sense of duty and love.
- Sometimes, financial concerns make hiring a professional caregiver impossible.
- It allows the family opportunity to spend valuable time together. This can be very important when a patient has a limited life expectancy.
Having care provided by strangers, no matter how qualified, can also make some patients feel uncomfortable, there are also downsides to having family caregivers:
- Most often, family members are not trained professionals.
- Family members may feel anxious or stressed about their changing role.
- Few family members truly understand the crushing workload of caring for a loved one with a progressive illness.
- Stress and busy schedules can lead to resentment and tension among family members, even ones who love each other dearly.
- This additional stress can also impact the health of family caregivers who neglect their own basic needs to help the sick person.
Professional Caregivers
While most mesothelioma patients rely on family members as primary caregivers, some hire professionals. A professional caregiver is usually paid for out of pocket by the family.
This could be a home health aide or someone who helps with basic tasks such as bathing, dressing, or helping around the house. For more medically complex assistance, a patient may need a nurse.
Depending on the situation, you may be able to get some coverage from your insurance company to hire a professional. This type of coverage is usually a few times a week for a few hours – not 24/7 care.[2]
Professional caregivers have specific duties outlined, and their roles may be less involved than those of family caregivers. For example, a professional caregiver may not be involved in treatment decisions. However, they do communicate with family members and doctors to notify them of changes or concerns.
What Mesothelioma Caregivers Do
The role of a caregiver is crucial and also varied. The primary function is to provide care and assistance to the sick patient in whatever form that takes. Typically, necessary care will change daily and could range from normal day-to-day activities to helping manage symptoms. A caregiver may clean the house, shop, cook, do laundry, or pay bills.
The caregiver may also:
- Track and administer medications
- Communicate with doctors
- Coordinate appointments
- Track medical bills
- Help the patient with personal hygiene
- Provide emotional support to the patient and the family
When Caregivers Need Support
Caregivers take on a very important role in the care of a mesothelioma patient. They do a lot of physical, mental, and emotional work, which can take a toll. Caregivers often suffer from isolation, depression, anxiety, and fatigue.[1]
When family members can split the job of patient care, the burden on each is less. It even helps when another family member can step in to help with cleaning or grocery shopping. These small jobs pile up, and help can make a big difference to the caregiver.
Caregivers with few other family members or friends can turn to support groups for help. In these groups, caregivers can commiserate, share stories, and provide emotional support.
Caregivers should remember to rest, relax, and recover. Although taking time for personal care can feel like abandoning the patient, a caregiver cannot give their best if they are emotionally drained and physically exhausted.[1]
Financial Assistance for In-Home Care
Even when a mesothelioma patient relies on a family caregiver, professional help is often necessary. A paid caregiver may be needed for advanced medical care or to provide much-needed breaks for family members.
Not everyone can easily afford this type of care, but there are avenues for assistance. Medicare and Medicaid may be options for some.[3] Veterans can check with the VA to see if they are eligible for home care services.
Mesothelioma caregivers, whether paid or unpaid, do an important job caring for vulnerable patients. They must be compassionate, caring, and prepared to help in whatever way necessary. This job is essential, but it is rarely easy. Caregivers also need breaks, support, and help from others to do the best job possible.
Page Medically Reviewed and Edited by Anne Courtney, AOCNP, DNP
Anne Courtney has a Doctor of Nursing Practice degree and is an Advanced Oncology Certified Nurse Practitioner. She has years of oncology experience working with patients with malignant mesothelioma, as well as other types of cancer. Dr. Courtney currently works at University of Texas LIVESTRONG Cancer Institutes.