Being a family caregiver was one of the most rewarding and, at the same time, challenging experiences Teresa Madden has ever experienced.
“Some of the memories that I had caring for my father are just magical and wonderful,” Madden said. “They were some of the best moments I had with him when I was taking care of him, but it’s also some of the most heartbreaking and stressful experiences I’ve ever endured.”
News that President Joe Biden signed an executive order directing federal agencies to improve services for family caregivers, long-term care workers, early educators and veterans is encouraging, Madden said.
“I definitely think there’s a need,” Madden, who has been interviewing Hawai`i caregivers for a play, “Malama (take care of) the Caregivers.” “We need to become more aware of what caregivers have to go through. We, as a society, have taken caregivers for granted.”
According to a recent AARP report, 38 million Americans provide an average of 18 hours of care a week to their family and friends. If they were paid for the service, the value of their work totals an estimated $600 billion. This conservative estimate doesn’t look at how much family caregivers spend on care or the loss of work income because of caregiving.
During the April 18 White House ceremony, Biden said his executive order to help caregivers is the “most comprehensive set of actions any administration has taken to date” on long-term care issues. Federal agencies will take “over 50 actions to provide more peace of mind for families and dignity for care workers, who deserve jobs with good pay and good benefits.”
The order includes improved access to home-based care for veterans, enhanced job quality and pay for long-term care workers, as well as additional support for family caregivers.
Madden said her late father, an officer and Vietnam veteran, knew how to navigate the Veterans Administration and got excellent care. But when he wasn’t able to communicate, Madden and her mother struggled to figure out how to help him.
“We didn’t know what to do,” she said. Home-based services for veterans are especially needed, she said, and caregivers need more access to mental health as well as respite care.
Biden’s order directs the Department of Health and Human Services to consider issuing guidance to improve the quality of home care jobs through Medicaid funding. It also directs DHHS to consider testing a new dementia care initiative including support for respite care and more support for family caregivers when a loved one is being discharged. It also directs the VA to consider expanding access to its Program of Comprehensive Assistance for Family Caregivers and expand mental health support for caregivers in the program.
Nancy LeaMond, AARP executive vp and chief advocacy and engagement officer, said the order is “an important step forward” and recognizes “the need to make family caregivers a national priority to meet the rapidly growing needs of families across America.”
“We will continue to work with bipartisan leaders in Congress to advance legislation that can further deliver relief to family caregivers such as paid leave, family caregiver tax credits and other reimbursement programs and support.
“AARP has spent decades fighting for family caregivers across the country, and we won’t stop until their needs are addressed — and their voices are heard.”
Craig Gima is the communications director for AARP Hawai’i.