We celebrate National Caregivers Day, the third Friday of February. It’s no coincidence that this appreciation day follows Valentine’s Day and happens in National Heart Month. Love is in the air. Everything is red this month. In fact, most family caregivers see a lot of red, today and every other day of their care journey.

Myth: Families take care of their own

I post care topics on multiple social media channels. I wish I had kept track of the number of times I received the response ‘families take care of their own.’ I ball up my hands to resist typing a response. Really? First, who is the family? Do we mean first degree relatives, extended relatives, families of choice, and friends? Secondly, what law obligates all family members to care for each other?

Some cultural norms greatly influence caregiving attitudes. Elder Abuse and Exploitation laws exist in every state, as well as other protections for vulnerable people that apply to cohabitating spouses or parents. To be clear, neglect and abuse protections are important yet the application varies greatly.

Myth: Caregiving is women’s work

Calling caregiving women’ work is so twentieth century. The definitions of parent and family expand and change over time. Gender no longer dictates who is the breadwinner. Like parenting, caregiving duties are shared responsibilities regardless of your X and Y chromosomes.

Myth: Money is not an Issue

The Social Security Law of 1935 and the Social Security Amendments of 1965 are etched in stone. Changing these outdated programs will require a national movement that is impossible in this political climate.

Most Americans enter ‘retirement age’ with little to no savings beyond their Social Security contributions. Every year the federal government issues a cost-of-living adjustment for Social Security payments. The 2020 average yearly payment was $18,194.76.

Consider, the 2020 national average monthly one-bedroom rent was $1,098.00 (keep in mind that rents vary significantly by location). What about the cost of food, transportation, utilities, and other living expenses?

Family caregivers supplement the budgets of aging family members. On average, an American family caregiver spends $7,200.00. Out of pocket for care, according to AARP .

Myth: Health insurance pays for Care

Medicare and Medicaid are part of the Social Security Law that is written in stone (see issues above).  President Johnson updated FDR’s work and doubled down on his promise that the country would take care of its retired workers. Both presidents wore rose colored glasses and failed to find an accurate crystal ball when making these prognostications. This century’s new Medicare Part D pharmacy benefit increased access to life-extending drugs but at a steep cost for most.

The level of care, either custodial and skilled care, determines who pays for care. Most senior adults live with two to four chronic health conditions managed by their primary care providers. The reality is more of today’s care can be provided at home and self-administered or with caregiver training shifting this task to a non-skilled (or custodial) status. Skilled care required a provider prescription (written order) and the payer’s blessing. The burden for nursing care is shifting onto caregivers who receive little training and oversight. Additionally, the healthcare labor shortage has skilled nursing home scrambling to keep beds available so family and home based services are filling in the gaps.

According to the Centers for Medicare and Medicaid the deductibles and copays continue to rise:

“Each year the Medicare premiums, deductibles, and coinsurance rates are adjusted according to the Social Security Act. For 2021, the Medicare Part B monthly premiums and the annual deductible are higher than the 2020 amounts. The standard monthly premium for Medicare Part B enrollees will be $148.50 for 2021, an increase of $3.90 from $144.60 in 2020. The annual deductible for all Medicare Part B beneficiaries is $203 in 2021, an increase of $5 from the annual deductible of $198 in 2020.”

Our nation’s care needs continue to increase while the resources available decline. Today’s Social Security programs do not live up to FDR’s promises made in 1935.

Myth: Caregiving is Easy

People with dementia disorders often require round-the-clock supervision and services not covered by insurance. Additionally, waiting lists for government funded services exist in almost every state today. Families are making tough, life-altering decisions to protect vulnerable family members.

Caregivers are tapping into their own savings and retirement plans to live and care for others. Statistics from the Alzheimer’s Impact Movement of the Alzheimer’s Association paint a painful image of caregiving today:

Alzheimer’s disease has a devastating impact not just on those with the disease. It’s also an extreme burden on their caregivers — a job that usually falls on family and friends.

• In 2019, more than 16 million family members and friends provided 18.6 billion hours of unpaid care to people with Alzheimer’s and other dementias, at an economic value of $244 billion.
• Of the unpaid Alzheimer’s and dementia caregivers, 86% have provided care for at least the past year, and half have been providing care for four or more years.
• Nearly one-fourth of Alzheimer’s and dementia caregivers are “sandwich generation” caregivers — caring for both someone with the disease and a child or grandchild.

Tell Your Story!

Family caregiver often go ‘into the red’ through the care journey. New grass root advocacy focus on these issues including Care Can’t Wait and Paid Leave for All . In addition, the Credit for Caring Act continues to have bipartisan, bicameral support however nothing is moving forward. There are no easy solutions for our nation economic demands but no action is not the answer.

Our leaders need to hear your care story, the good, bad, and ugly. Please contact your state and federal legislators, write to the President, or call your local television stations. Talk about the sacrifices you are making and concerns about your future.

Lastly, from our team at REUNIONCare and Credit for Caring, we thank you all caregivers on this special day. We are here for you today and everyday.

Yours in Health,

Monica

Monica Stynchula, MSW, MPH

CEO REUNIONCare, Inc.