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Mesothelioma is a progressive and usually fatal cancer. There is no known cure, and most patients with the disease will become sicker over time. Although treatments can extend life and relieve symptoms, mesothelioma will usually only get worse. Depending on the patient and the stage of the cancer, a regular caregiver may be necessary.
Caregivers assist people who are ill. A caregiver may be a family member or a professional health care worker. This person may come to the patient’s home for a few hours a day or live there permanently. Caregivers may work in health care facilities or with patients on a residential or outpatient basis. They provide everything from basic care, like feeding, to minor medical care, such as administration of medications. Caregiving is an important but difficult job, and caregivers may also need care and support.
What Is a Caregiver?
A mesothelioma caregiver, provides assistance, to 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. He or she may also help make decisions about care and treatment. As a part of the total team, caregivers must also communicate with doctors and other medical professionals about the patient’s symptoms, treatment reactions, and any other issues.
For many people struggling with an illness, the primary caregivers are family members and friends. There may be one main 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.
There are many benefits to having a family caregiver. First, 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. Also, 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.
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 assistant, or someone that helps with basic tasks such as bathing, dressing, or help around the house. For more medically complex assistance care sometimes this requires a registered nurse. Depending on the situation you may be able to get some coverage from your insurance company to have help throughout the week, but this type of coverage is usually a few times a week for a few hours – not 24/7 care.
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 decision. 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 basic role of a caregiver 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 house, shop, cook, do laundry, or pay bills.
More directly, the caregiver may also track and administer medications, communicate with doctors, coordinate appointments, and track medical bills. The caregiver will also help the patient with personal needs like bathing, changing, going to the bathroom, and other necessary hygiene. A caregiver, may also 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 really take a toll. Caregivers often suffer from isolation, depression, anxiety, and fatigue.
When the burden of patient care can be split between family members, 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 helping 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.
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. 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 important, 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.