When both of my parents were diagnosed with terminal illnesses on the same day, I was completely unprepared to become their caregiver. I was unprepared to become their health advocate. I was unprepared to move them out of their home of 30 years and into assisted living, memory care, and eventually hospice. I was unprepared to sort through their finances, pay their bills, and execute their wills. And I was definitely unprepared to do all of those things while raising my own family and working full time. Like me, most family caregivers aren’t prepared and that has to change.

That has to change because according to Pew Research, there are 40.4 million unpaid caregivers of adults ages 65 and older in the United States and that number is expected to grow. Ten thousand people turn 65 every day in this country and as a result, the Family Caregiver Alliance predicts we will need between 5.7 and 6.6 million caregivers to support the sick and aging by 2030.

That has to change because per the AARP Public Policy Institute, family caregivers provide an estimated 37 billion hours of “free” care—worth $470 billion—to parents, partners, and other adults. In 2013 that amount exceeded the value of paid home care and total Medicaid spending.

That has to change because 70 percent of working caregivers suffer work-related difficulties due to their caregiving responsibilities. As a result they lose wages, health insurance, retirement savings and Social Security benefits.

That has to change because family caregivers are called on to do so much more than assist with errands, transportation, meals, and bill paying. More than fifty percent of family caregivers are increasingly performing medical and nursing tasks such as giving injections, helping with tube feedings, and providing catheter and colostomy care with very little, if any, training. 

November is National Family Caregivers Month, a time to recognize and honor family caregivers across the country. Let’s do that by preparing ourselves to better care for our oldest citizens by supporting our invisible army of family caregivers.

What will that take?

First, we need better quality, and affordable, care options. According to PayScale, the average hourly pay for a caregiver is $10.89. That’s less than minimum wage where I live. Better working conditions for our paid caregivers will mean better quality care, and therefore peace of mind and fewer workplace interruptions for family caregivers. And we need our elected officials who are advocating for affordable childcare to also advocate for affordable eldercare so that family caregivers can get help they need. 

Second, we must value the work of care. We can start by passing The Credit for Caring Act which would provide working family caregivers with a nonrefundable tax credit up to $3,000 to assist with out-of-pocket expenses related to caregiving.

Third, we must make working while caregiving possible. Family caregivers need flexibility in order to juggle the demanding needs of both work and family responsibilities. That means funding paid family leave policies and expanding eligibility requirements. Massachusetts, for example, recently introduced a paid family and medical leave program that, when it goes into effect in 2021, will be available to every worker in the state and affect every employer. Other states should follow suit.

And finally, we must support family caregivers with training and resources. Too often, family members with complex care needs are discharged to family members who have no training and don’t know how to access support. The Caregiver Advise, Record, Enable (CARE) Act, aims to change that. It requires hospitals to consult with family caregivers about discharge plans and instruct them on the medical tasks they will handle at home. The CARE Act has been signed into law in 40 states. We need the rest of the states to take action.

We are one year out from the presidential election. Let’s use this time to raise our voices, cast our votes, and demand that family caregiver no longer feel unsupported and  unprepared when they are called onto support a family member in need.