In a recent survey, AARP found that about three-quarters of all caregivers spend, on average, 26 percent of their household income on caregiving.
This is on top of the estimated $470 billion in unpaid care that they provide; and doesn’t include the potential lost income due to work-related strain that over half of caregivers report.
It’s clear that caring for a family member creates a financial hardship for many, and even a catastrophe for some; especially when caring for someone with dementia or Alzheimer’s Disease.
If you’ve experienced it, you know that there’s nothing worse than feeling financially strapped! Especially if you’re also feeling overwhelmed by caregiving responsibilities. So, if you are facing economic strain because of a caregiving situation, here are a few organizations that may be able to help.
Area Agencies on Aging (AAA)
The official name is “area agency on aging” but you may know these organizations as senior centers, and there’s one in nearly every community. Their charge is to help “vulnerable older adults live with independence and dignity in their homes and communities.”
Sometimes they have programs for families in need. Other times, they can point you in the right direction. If you need help, you should start here. The national association of area agencies on aging (N4a) has a tool that will direct you to your local AAA. Or, you can call 800.677.1116.
National Council on Aging
The National Council on Aging (NCOA) is a not-for-profit organization that advocates on behalf of older adults and their families. And, if you find yourself helping your parents with basic living expenses, NCOA has a great tool for figuring out whether there are programs for which they might qualify. It’s called, BenefitsCheckUp.
NCOA also offers an educational program to help you navigate Medicare, your parents’ health insurance program. It’s called MyMedicareMatters. It provides unbiased information to help you and your parents make decisions about the options that best meet their needs.
If you’re worried about how your parents are managing their money, you can direct them to EconomicCheckUp, which shares tips and in-depth advice on a range of issues like managing money in retirement and protecting yourself from scams.
I love the NCOA educational tools and programs!
Your State Medicaid Agency
Medicaid is the state-run program that provides medical insurance to low-income individuals, but it also provides coverage for nursing home and in-home care when your parent has exhausted most other resources.
Read: 5 Common Misconceptions about Medicaid
In addition to providing important financing for your parents’ care when they run out of money, some state Medicaid programs will also pay family members to provide care. This type of Medicaid program is often referred to as “cash and counseling,” and it’s offered in many states. You can get information on these services in your state by checking with the resources listed above, and by searching online for your state’s aging and disability resource center (ADRC) (e.g., Minnesota aging and disability resource center). The ADRC is another organization that’s available to help direct you to needed resources; especially to help you connect with available Medicaid services.
Also Read: The 4 Most Frequently Asked Questions About Medicaid
In addition to checking out these organizations, there are also a few other things you can do:
Have a Talk with Family
It’s not uncommon for a parent to reimburse a son or daughter for expenses related to caregiving or for providing direct care. If you go this route, make sure to work out a formal contract, preferably with the help of an elder care lawyer who can make sure you don’t run afoul of legal issues.
Family and money is always a challenging combination. But, many families are able to work out all kinds of creative solutions when one adult child is shouldering more of the work and expenses than others.
Also read: Caring for Aging Parents — A Sibling’s Survival Guide
Set Boundaries Around Your Parents’ Finances
Remember! It’s also okay to say “no” to some expenses. You can’t fix every problem. And, if your parents have been irresponsible about money, you can’t protect them from the consequences.
Read: 5 Lessons in Setting Boundaries that Every Caregiver Must Learn
Advocate
Finally, you can alert your state and federal legislators about your experience as a caregiver, and particularly the financial stress it creates. It’s hard for anyone — even policymakers — to understand what caregiving involves if they haven’t been through it.
The good news is that there’s a growing recognition of the challenges you face AND the value of the work you do. Reports like the one from AARP recognize your contribution, and the positive impact of the care you provide.
The more you can get involved and alert public officials about the trade-offs you make to provide this care — for example, trade-offs between your parents’ care, your retirement savings and your kids’ college tuition — the more likely it is we’ll see changes in law that allow for better economic supports for family caregivers… policies such as caregiver tax credits and better family leave.
Even more importantly, we need to alert policymakers to the need for an insurance system to cover the costs of long-term care. Medicare doesn’t cover home care or assisted living, so families pay out of pocket or provide the care themselves. If a family member has Alzheimer’s or Dementia, the financial impact is often catastrophic. You may want to check out this Bonus episode of Daughterhood the Podcast where Rosanne and I speak with Dr Joann Lynn about The Long-Term Care Crisis.
An insurance system that protects older adults against the catastrophic risk of long-term care costs would also go a long way towards creating greater economic security for their families and caregivers. In fact, it would be the most effective way to truly improve the lives of caregivers.