Alice from Texas cared for her husband, Cort, after he suffered a severe stroke. She recently shared her story on I Heart Caregivers, writing, “After a week in intensive care, three weeks in a rehab facility and a month in a nursing home, I brought my husband home to begin his care. He came home with a severe wound on his back. I learned wound care, changing catheters, all the duties of a home healthcare nurse. Since then, he has had numerous hospital admissions, emergency room visits…”
While Alice was Cort’s sole family caregiver, she isn’t alone. Today, 42 million Americans perform a great labor of love: helping their older loved ones to live independently at home—where they want to be.
Like Alice, about half of these unsung heroes perform medical and nursing tasks that were once in the domain of only doctors or nurses. They clean wounds, handle feeding tubes, give injections, and manage complex medications—in addition to cooking meals, handling finances, doing the chores, providing personal care like bathing and dressing, and much more.
Last year, AARP began to fight for a new state law called the Caregiver Advise, Record and Enable (CARE) Act to support family caregivers when their loved ones go into the hospital and as they transition home. The CARE Act is now law in Oklahoma and New Jersey, and has been introduced or prefiled in 12 state legislatures this year to date, while New York Gov. Andrew Cuomo (D-NY) expressed support for New York’s caregivers in his State of the State by announcing the Caregiver Support Initiative that “will ensure that informal caregivers are clearly identified and provided training and supports before their loved one is discharged from a health care facility.” Two highlights:
- In Virginia: The bill has already been introduced in both the House (HB 1413) and Senate (SB 851). On Jan. 27, hundreds of AARP members will flock to the State Capitol to urge their legislators to pass the bills and support family caregivers.*
- In North Dakota: Rep. Alan J. Fehr introduced the CARE Act, saying, “These are simply good practices so that loved ones can continue to live safely and independently in their homes and communities.”
According to a new study by the Journal of Healthcare Quality published just last week, “When hospitals adopt proactive, enhanced transition interventions to assure that family caregivers are well prepared when patients are discharged, the incidence of adverse outcomes … can be reduced significantly.”
As the first line of defense against older Americans being forced back into the hospital — or into nursing homes — family caregivers provide about $450 billion a year in unpaid care. The value of this care is greater than the annual cost of Medicaid for institutional stays and services to help people stay at home.
Bottom line: Today family caregivers shoulder great responsibilities, and they could use a little bit of help. The CARE Act is one of the commonsense solutions that AARP is fighting for to support both family caregivers and their loved ones. I urge you to join me and Alice by sharing your story on I Heart Caregivers to help us fight for you and your loved ones: more support, help at home, workplace flexibility, training and more.
Update 3/27/2015: The CARE Act was signed into law in Virginia on 2/28/15 and West Virginia on 3/27/15.
Elaine Ryan is the vice president of State Advocacy and Strategy Integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.
Follow Elaine on Twitter: @RoamTheDomes.