Caregivers of Veterans with Mesothelioma
Caregivers of veterans with mesothelioma face unique challenges, including navigating the VA system, finding specialized care and arranging respite care.
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 formerly offered little guidance to those who cared for veterans with mesothelioma. 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
In 2021, veterans with mesothelioma became eligible for the VA’s Program of Comprehensive Assistance for Family Caregivers, also known as PCAFC, which offers several forms of support that could alleviate the burden for the caregiver and the veteran.
To qualify for the program, a veteran with mesothelioma must have developed the condition as a result of service-related exposure to asbestos on or before May 7, 1975. This includes veterans exposed while serving in World War II, the Korean War and the Vietnam War.
To apply for the VA’s caregiver program, the veteran must already be enrolled in VA health care. Visit www.caregiver.va.gov and download VA Form 10-10CG to begin the application process. You may also apply in person at your local VA medical center through a Caregiver Support Coordinator.
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 to the patient’s cancer-related needs.
Caregivers can turn to services that specialize in providing training and support for those who care for veterans. These can include:
- Support groups
- Locating a mentor through the VA’s Caregiver Peer Support Mentoring Program
- Finding a counselor who supports caregivers or calling the VA’s National Caregiver Support Line to speak with a caring licensed professional
- 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 its system and shorten wait times.
A 2019 study published in the Journal of the 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 veterans.
Caregivers of Veterans Lack Financial Guidance
According to the caregiving survey, half of all caregivers of veterans reported that caring for their patients caused 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:
- VA Caregiver Program: The primary caregiver of a qualified veteran may access a monthly stipend based on the amount and degree of personal care services provided.
- Medicaid: In some states, the federal program allows caregivers to receive compensation from their patient via Medicaid. You can visit eldercare.gov for more information.
- Hero Miles: The program provides round-trip tickets to veterans undergoing treatment at a VA hospital and their caregivers.
- 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:
- VA Respite Care: The VA’s caregiver program provides at least 30 days a year of respite care.
- 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.
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.
A care manager at the VA might help with locating special care. 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.
New Help from the VA
In addition to VA claims benefits for disability compensation and treatment, the VA now offers veterans with mesothelioma a variety of caregiving benefits, including financial benefits to help offset caregiving costs. That’s because the VA expanded the eligibility of the caregiver program as a result of the VA MISSION Act of 2018.
- A monthly stipend
- At least 30 days of respite care a year
- Caregiver education and training
- Mental health services
- Travel, lodging and financial aid to help veterans access care
- Access to health care benefits through the Civilian Health and Medical Program of the Department of Veterans Affairs, also known as CHAMPVA
Additionally, there are other resources caregivers can tap into, including:
- 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 wives, daughters, sons or any other family member, understand there are resources at the VA and outside the VA that can offer help.
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