Caregivers assume a role that can be both fulfilling and rewarding, and potentially draining and difficult as they support loved ones through a health crisis or significant life challenge. Fortunately, there are a variety of support resources available to help alleviate some of their burden and to help caregivers as they provide support and care for those facing a mesothelioma diagnosis.
Topics discussed on this page include long term health care planning, financial assistance, insurance coverage, hosuing, transportation, counseling, support sercvices, spiritual guidance, end of life planning and mesothelioma books.
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Planning for Long-Term Cancer Care
Aggressive cancers such as mesothelioma can take a toll on patients, requiring them to utilize a variety of care options, including hospital care and home care. Planning ahead for long-term care options can help patients and families ensure a seamless transition between care facilities.
During the planning process, patients and their loved ones should do the following:
- Conduct plenty of research into long-term care options
- Note the location of care facilities
- Look into facility reputations
- Know the options available for long-term care
- Decide how to fund the cost of care
- Learn about government programs are insurance policies that may help with costs
Assistance Finding Long-Term Care Solutions
There are many conversations that cancer patients and caregivers need to have. Understanding the patient’s medical needs is key, requiring advice from oncologists and other physicians involved in his or her treatment plan. Insurance carriers are another resource for providing policyholders with their options and coverage information.
Hospital social workers are also a great resource, especially for those that only have coverage through Medicare and Medicaid. Medicaid coverage laws differ by state, but it’s important to note that in many cases, Medicaid doesn’t cover long-term care for cancer patients.
Long-Term Home Care for Cancer Patients
After having the appropriate conversations and discussing the patient’s medical needs, in-home care might be the preferred option. Some locations allow caregivers to seek out long-term in-home care programs that provide care to patients within the comforts of their own home, under the supervision of a skilled health care team. This type of program may be able to provide registered nurses, case managers, medication management, transportation to treatments, medical supplies and equipment and home modifications.
If this is a potential consideration, caregivers or patients should reach out to their mesothelioma treatment oncologist or social worker to see if there is a program in their location or available through their hospital.
Financial Assistance for Mesothelioma Patients
Patients facing a diagnosis of an aggressive, terminal cancer such as mesothelioma face a growing amount of bills, including existing bills, treatment costs and secondary costs. With so many factors already consuming a patient’s time and energy, financial burdens only add on to the stress of a poor diagnosis.
Costs to Consider
Caregivers can offer support by helping patients plan for costs that may accrue from the time of diagnosis through their treatment journey.
- Treatment costs: Chemotherapy drugs, chemotherapy and radiation therapy sessions, inpatient and outpatient care after surgery (recurrent for palliative surgeries).
- Secondary costs: Travel and lodging when seeking out mesothelioma specialists and major cancer care centers, as well as loss of income from time in treatment or physical limitations.
Legal Assistance for Financial Burdens
The majority of malignant mesothelioma cases have been proven to be caused by asbestos exposure, which was often due to occupational exposure. Asbestos manufacturers and employers knew the hazards of the carcinogenic material, yet continued to expose consumers and employees.
As a result, asbestos disease victims have sought legal help from specialized law firms to file asbestos and mesothelioma claims to gain financial compensation for their injuries and suffering.
Ways that financial assistance can be found include:
- Mesothelioma lawsuits: An attorney can help you or a loved one file a lawsuit against companies responsible for producing asbestos.
- VA benefits: A mesothelioma lawyer can help veterans discover and apply for benefits, as well as figure out all modes of financial assistance available to them.
- Social Security benefits: Lawyers are well-versed in benefits mesothelioma victims might be eligible for, including social security. They can help with determining eligibility and applying for available benefits.
FINANCIAL ASSISTANCE For Mesothelioma Victims
Request FREE information about financial assistance that may be available for those diagnosed with mesothelioma.
Learn More About the Following:
- Mesothelioma Trust Funds
- $32 Billion Already Set Aside
- Compensation for Veterans
- It’s Easy to See if You Qualify
Health Insurance and Cancer
A common concern for cancer patients is whether or not their health insurance will cover their treatment. Medical care can become extremely costly, especially when claims are denied by insurance companies. Patients should have a thorough understanding of primary insurance treatment coverage, as well as any supplemental coverage that may be offered through other insurance types, such as Medicare, Medicaid, VA benefits and Social Security. If questions or concerns arise, patients should seek the help of loved ones, as well as insurance representatives.
- What is covered and to what extent? (i.e. mesothelioma doctor visits, treatments, hospitalization)
- Are there copays, and if so, what are they?
- Do specialist, treatment and hospital visits have to be pre-authorized by my insurance company?
- Am I able to choose what specialists I see?
- If I’m not pleased with a particular doctor, may I make a change?
- Am I permitted to go out-of-network for care, particularly for a specialist that will better treat my disease that is not in-network?
- What treatment options are best suited for my coverage? (i.e. home health, physicians’ offices, hospital settings)
Primary Insurance and Coverage
There are many different types of primary health insurance available. A managed health care plan (MCO) breaks down into three different types: HMO (health insurance organization), PPO (preferred provider organization) or POS (point of service PPO). Each type differs based on coverage, however, there are some overarching characteristics that provide a basic understanding.
Typically MCOs provide policy holders with a list of in-network providers to choose from, and choosing to go out-of-network (common when seeking out mesothelioma specialists) entails an additional cost. In some cases, pre-approval may be required for specialist coverage. For some patients, it may be a possibility to seek a change in their policy to receive better coverage.
Other Coverage Options
Medicare and Medicaid are other common forms of supplemental insurance funded by the government. Coverage varies and patients should discuss specifics with their provider before seeking treatment. Medicaid in particular presents many limitations for mesothelioma patients, as many office-based mesothelioma clinics don’t take Medicaid and won’t accept it as secondary coverage for chemotherapy and radiation treatment methods.
There are additional government-funded programs that may be an option for underinsured cancer patients. Veterans may also have other options, such as the ability to receive treatments at a VA hospital or obtain prescription medications through a local veteran medical center. For those that are unable to work, Social Security disability benefits may be an option to help make up for the financial hardship of lost income.
Long-Term Housing for Cancer Patients
Managing a hard-to-treat cancer often requires patients to seek out professional medical advice from cancer centers and long-term specialist care away from their home. Travel back and forth can be expensive and require a lot of help from friends and family if mesothelioma patients are unable to drive themselves, which is often the case with aggressive treatments. Long-term housing may be the best solution, however, it’s not always easy to find lodging that’s suitable for the patient’s needs, affordable and covered by insurance.
Resources for Finding Out-of-Town Housing
In addition to doing personal research and discussing patient needs with physicians, hospital social workers are a helpful resource. Major cancer centers in particular, which are popular for mesothelioma treatment, often have partnerships with local apartments, hotels and other establishments nearby that will help patients find a trustworthy housing option within their budget and located close to their treatment facility.
- Call area hotels and provide them with information on your situation
- Look for hotels with suite options that provide long-term accommodations and accessibility
- Contact area accommodations and ask about special pricing for patients seeking long-term care nearby
- Utilize the internet to see both short- and long-term lodging options
- Visit Joe’s House to find thousands of lodging options across the United States, some of which are partners with the website directly
- Look into the American Cancer Society’s Cancer Hope Lodges, which provide a free place to stay at dozens of locations across the country. They are a “home away from home” for cancer patients and their families, while also providing a plethora of connections and resources.
Transportation Help for Cancer Patients
Patients undergoing mesothelioma treatment often need help from friends and loved ones to get to and from follow-up appointments and treatments. For times when this isn’t an option, there may be other resources that patients can turn to.
Local Transportation Services
Community-based transportation may be the best option for patients with city-, country- and state-run services. The yellow pages, the internet or a quick search for “transportation services near me” can be extremely helpful.
Other places to seek help:
- The State Department of Transportation
- Hospital social workers
- Cancer centers (may have on-site transportation services)
- Community charitable organizations, such as churches or senior centers
Specialized Cancer Transportation
In addition to community-based resources, there are some programs created specifically for cancer patients.
- Road to Recovery: Provided by the American Cancer Society, Road to Recovery helps patients get to and from treatment when they are unable to seek out a ride elsewhere. For more information, visit their page.
- Angel Flight: Run by volunteers, Angel Flight provides air transportation to patients in medical need and facing financial hardships. Requirements and eligibility information can be found on the Angel Flight website.
- Lyft: Lyft partnered with Blue Cross Blue Shield in 2017 to pass along free rides to covered cancer patients. They continue to explore other partnerships, such as one with the American Cancer society to provide free medical transport to patients in need. Contact the American Cancer Society for information on other potential partnerships.
For caregivers or loved ones that want to help other patients in need, consider volunteering your own time to give a ride to others going through cancer treatments.
Cancer Support Services
Mesothelioma patients and others diagnosed with a terminal cancer face an array of challenges, both emotional and physical from the cancer itself, as well as treatment side effects. Fortunately, there are some cancer support resources that can offer assistance, peace and comfort.
- Audiology: Hearing aids are available in a variety of shapes, sizes and features to assist patients that are hard of hearing, which is a common issue for older individuals.
- Floral services: Flowers are a simple, yet kind gesture that can show someone you care. Consider a colorful arrangement to brighten their day, but be wary of hospital limitations or strong-scented flowers that could trigger nausea.
- Food services: Caregivers should branch outside of the hospital cafeteria and explore other food options for a change of atmosphere. It’s important to remember to eat all meals, especially during a stressful time that changes your daily routine.
- Seeing-eye dogs: Seeing-eye dogs can help those with poor eyesight get around, while providing them with emotional support as well.
- Sign language interpreters: The ADA has a law that requires public accommodations, like hospitals, to provide ASL services to deaf patients and caregivers. Private interpreters are also an option. Many doctors and hospitals can provide a list of local ASL interpreters.
- Travel agents: Mesothelioma treatment often requires out-of-town travel to find specialists and renowned cancer clinics. Travel agents can help find deals and accommodating services for patients and their families to plan ahead and find travel options that meet their needs.
- Wish fulfillment programs: Similar to Make-A-Wish, there are programs that provide wish-fulfillment services to terminally ill adults, such as those affected by malignant pleural mesothelioma. Some options include Second Wind Dreams, Reeling and Healing Midwest, Dream Foundation, For Pete’s Sake Cancer Respite Foundation and Forever Young.
Counseling for Cancer Patients
Both cancer patients and those around them often deal with a plethora of emotions after diagnosis, including shock, denial, disbelief, anger, guilt, anxiety and depression. A counselor might be a solution for helping patients, caregivers, friends and family members to cope with diagnosis.
There are many different types of counseling out there, and other services from licensed psychiatrists and psychologists. Patients and caregivers can partake in individual counseling or family counseling. Insurance may cover services, or it may not, so it’s important to get into contact with potential centers and discuss financing and coverage options.
Spiritual guidance is a resource that some cancer patients rely on and view as an additional mode of support. Facing a serious and terminal disease can change a patient’s beliefs, and cancer centers often offer patients guidance and resources based on whatever denomination they are. Spiritual guidance can also be helpful to caregivers, offering a sense of peace and acceptance. (The Mesothelioma Cancer Alliance at Mesothelioma.com does not recognize or advocate on behalf of any single religious, spiritual or other denomination or sect.)
Patients diagnosed with terminal cancer face many hard decisions, and end of life planning isn’t always easy. Oftentimes, caregivers have much responsibility to assist with important decisions.
Items to consider include:
- Wills and DNRs
- Living trusts
- Hospice vs. in-home care
- Funeral planning
- Community resources available
Mesothelioma Books and Cancer Books
Discovering all that there is to know about mesothelioma and other cancers can help patients and their caregivers get answers about the disease, learn about emerging clinical trials that seek to find a cure and offer hope for surviving mesothelioma, read the stories of mesothelioma survivors, find informative reference guides and much more.
Popular places to find mesothelioma and other cancer-related books:
- Cancer books at Barnes & Noble
- Mesothelioma books at Barnes & Noble
- Best-selling cancer books on Amazon.com
- Mesothelioma books on Amazon.com
- Mesothelioma ebooks for Kindle
- Mesothelioma ebooks for Nook
Explore must-read book sections and sort by the best reviews to find books that others found helpful when looking for more information on mesothelioma and other rare cancers.
The Importance of Caregiver Resources
Mesothelioma is a type of cancer that can drastically change one’s life, as well as those around him or her. Caregiver resources can provide patients and families with the resources they need to fully understand what help is available and push them to seek help when going through such a difficult time. By planning for what’s ahead, patients and caregivers can discover the support they need for their treatment journey.
Author: Linda Molinari
Editor in Chief, Mesothelioma Cancer AllianceRead about Linda
Reviewer: Annette Charlevois
Patient Support CoordinatorRead about Annette
Amazon. Accessed July 16, 2018.
American Cancer Society. Accessed July 16, 2018.
American Cancer Society. Road To Recovery. Accessed July 16, 2018.
Angel Flight. Accessed July 16, 2018.
Barnes & Noble. Accessed July 16, 2018.
Family Caregiver Alliance. Accessed July 16, 2018.
Joe’s House. Accessed July 16, 2018.
National Caregivers Library. Accessed July 16, 2018.
American Cancer Society. Road To Recovery: Give a ride to cancer treatment. Accessed July 16, 2018.
Today’s Caregiver. Accessed July 16, 2018.