There are different definitions of survivorship.
Survivors may be continuing with “treatment” or management, so it is unclear when primary treatment has ended. Survivors will also have a desire or need to “get on with their lives.” Survivors are considered individuals with the cancer diagnosis, not the family. Many patients think it may be a combination of the definitions. Having been a spouse of a former myeloma patient, I feel that the main objective for both the caregiver and patient is to survive and live well. My husband and I both felt that we were battling cancer. For those among us who are living with myeloma, this is becoming the case because with the newer advanced treatments, myeloma is fast becoming more of a chronic disease rather than a terminal one.
Therefore, no matter where you are in your cancer journey, it's imperative that you take a deep, concerted look at your finances and plan for the worst but expect the best. In doing so, spouses must determine what's important now and in the future.
When reviewing and organizing your finances, it's important to consider:
As a caregiver, depending on where you live, many states are now offering financial assistance. In October, Maine will join some other states giving eligible family caregivers up to $2000. (a one-time grant) In our country, up to 53 million people provide unpaid care for older relatives or disabled family members. This grant is open to family caregivers and other informal caregivers caring for someone who is at least 60 years old or suffering from dementia or related conditions. This may give relief to some cancer patients who also fit these criteria.
Here are the states that provide assistance. Maryland and Delaware provide paid sick leave for workers with sick family members. Colorado, Connecticut, Massachusetts, New Jersey, New York, Oregon, Rhode Island and Washington along with the District of Columbia offer paid sick leave. These programs are funded through employee-paid or employer-paid payroll taxes.
New Mexico has applied to the Centers for Medicare and Medicaid Services for a waiver allowing the state to use some federal funds to compensate family caregivers and legal guardians serving as caregivers.
Hawaii has the Kupuna Caregivers Program, which it started in 2018. It targeted unpaid state workers who are also unpaid primary caregivers to senior relatives. It provides up to $210/week to cover services such as senior daycare, in-home personal assistance, and respite care.
The National Council on Aging estimates that each year, seniors and their caregivers fail to apply for aid and miss out on $16 billion in benefits, including Medicare, Medicaid, veterans’ programs, and National Family Caregivers Support Program, which provides grants to the states. The council also offers a free benefit tool at BenefitsCheckup.org to help seniors and caregivers identify which benefits they are eligible for.
You can also access other resources such as your local Agency on Aging and the Family Caregiver Alliance, which also provides an online tool to take advantage of state programs.
It’s no secret how expensive, either directly or indirectly, illness or aging can be. Caregivers must consider all financial resources that may be available to them from a Federal, State, and local perspective.
Don’t let opportunities pass you by. No matter where you are in your cancer journey, there are probably resources that can make things a little easier. And as always, there are Financial Coaches available to assist you with your questions and concerns.
HealthTree Coaches are volunteer myeloma patients and caregivers willing to share their experiences and resources with others. You can view all Coaches with experience with financial resources here.
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about the author
Diahanna is the Financial Program Manager for the HealthTree Foundation, specializing in financial help for multiple myeloma and AML patients. As a professional financial consultant and former caregiver of her husband who was diagnosed with multiple myeloma, Diahanna perfectly understands the financial issues facing myeloma patients.