Caregivers of Veterans with Mesothelioma

Caring for a Veteran with Mesothelioma Cancer

If you’re a caregiver to a veteran with mesothelioma, you’ve likely encountered a lot of red tape when dealing with the Department of Veterans Affairs.

That’s because the VA offers little guidance to those whose care for veterans. Most caregivers are wives, daughters, sons, sisters or other people related to the mesothelioma patient.

A 2010 National Alliance of Caregiving survey reflected the frustrations these caregivers face.

The challenges unique to those who care for veterans include:

• Higher than normal burden of caregiving
• Trouble understanding the VA health care system
• Little to no financial guidance
• Burnout
• Difficulty finding specialized care
• Limited help from the VA

However, there are several forms of support that could alleviate the burden for the caregiver and the veteran.

Challenges and Solutions for Caregivers of Veterans

Greater Impact of Caregiving

Twice as many caregivers of veterans have a high burden situation compared to those who do not care for someone who served in the U.S. armed forces.

If a veteran suffered a life-changing injury during their service, a caregiver will be dealing with activities of daily living, such as dressing, bathing and feeding the patient, in addition to attending the patient’s cancer-related needs.

Caregivers can turn to services that specialize in providing training and support to those who care for veterans. These can include:

• Support groups
• Locating a mentor through a veterans service organization
• Finding a counselor who deals with caregivers
• Calling the Veterans Crisis Hotline at 1-800-273-8255

Difficulty Cutting Through VA Red Tape

Veterans seeking health care benefits through the VA encounter a complex system that is difficult to navigate and well known for its long wait times.

However, the VA is taking steps to simplify their system and shorten wait times.

A 2019 study published in the Journal American Medical Association reported that wait times were cut to 17.7 days in 2017. The average wait time in 2014 was 22.5 days.

The Veterans Department at The Mesothelioma Center can guide caregivers on how to file VA paperwork for their military veteran.

Caregivers of Veterans Lack Financial Guidance

According to the caregiving survey, half of caregivers of veterans reported that caring for their patient causes a high degree of financial hardship.

Those who care for a veteran with malignant mesothelioma are usually their wives who are retired and on a limited income. This may increase the financial burden.

Some groups that may offer financial help include:

• Medicaid: In some states, the federal program allows caregivers to receive compensation from their patient via Medicaid. You can contact eldercare.gov for more information.
• Hero Miles: The program provides round-trip tickets to veterans and their caregivers undergoing treatment at a VA hospital.
• Supplemental Security Income (SSI): Monthly cash benefits from the federal government can help caregivers of disabled patients meet some basic needs.

Caregiving Burnout

Caregivers of veterans don’t receive much help and many don’t know how to arrange a break from caregiving. Burnout can lead to impatience, trouble coping with daily demands, exhaustion and frustration.

Sources that may alleviate burnout include:

• Fisher Houses: These “home away from home” centers provide respite for veterans and their primary caregivers during treatment.
• Assistance from family members: While most caregivers are the wives and daughters of the serviceman diagnosed with mesothelioma, other family members can pitch in with help from time to time.

Caregivers should also reach out to their local VA to inquire about respite care.

Trouble Finding Specialized Care

Veterans and their caregivers often do not know where they should go for specialized care.

This is especially true for veterans with mesothelioma because only a handful of VA health care facilities are equipped to treat the asbestos-related disease.

These resources might help with locating special care:

Care managers: Finding specialized care within the VA is something a care manager can help with, but less than half of caregivers said their veteran had a care manager.

Limited Help from the VA

Although veterans are eligible to receive VA claims benefits for treatment, the VA currently does not offer all caregivers financial benefits to help offset caregiving costs.

That’s because the VA offers financial and other caregiving benefits to those who care for veterans who were injured on or after Sept. 11, 2001, according to the VA. Qualifying veterans must have certain injuries such as traumatic brain injury, psychological trauma and mental disorders.

Illnesses, such as mesothelioma, do not qualify under the VA’s restrictions.

However, there are resources caregivers can tap into such as:

• Patient navigators: Caregivers should request a patient navigator from their local VA hospital or non-VA hospital. Patient navigators may be oncology nurses or trained oncology social workers.
• Outside help: Veterans may consider looking outside of the VA for a social worker or patient advocate who can help them access resources and support.

Caregiving for a patient who is also a veteran is an honorable but difficult task. It’s important that caregivers, whether they are the wives, daughters, sons or any other family member, understand there are resources at the VA and outside the VA that can offer help.