The CARE Act: Caring for Family Caregivers

My sister Linda and I (far left) with Mom and Pop

My sister Linda and me (far left) with Mom and Pop

I was a family caregiver for my Mom and Pop for more than 15 years. After all they’d done for me, it was my pleasure to care for them. Through the years, we were in and out of a dozen hospitals and rehabilitation centers. Each time at discharge, I was handed a dizzying array of responsibilities to ensure my parents recovered from illness and regained their health and happiness. Medication changes, wound care, nebulizers and more became part of our post-discharge regimen. But the tasks were intimidating. I wasn’t a trained medical professional.  And the consequences of making a mistake in their care weighed heavily on me.

Millions of Americans have experiences just like mine. For many, family caregiving is more than help with household chores or providing transportation. It includes complex care responsibilities that were once provided only by medical professionals. In fact, almost half of the 42 million family caregivers in America have performed medical/nursing tasks for their loved ones. These tasks include:

  • managing multiple medications
  • providing wound care
  • managing special diets
  • operating monitors or other specialized medical equipment.

By providing this care, family caregivers play a critical role in helping to keep their loved ones from being readmitted to the hospital, out of costly institutions and safe at home. Most, like me, do so with no medical training.

Yes, being a family caregiver can be a big responsibility, but there are common-sense steps we can take that would make a world of difference to us - and to the loved ones we help.

Our experiences are a big part of why AARP developed the Caregiver Advise, Record, Enable (CARE) Act. The CARE Act supports family caregivers when our loved ones go into the hospital, and it helps us learn what we must do to safely provide care when they’re discharged home.

The CARE Act features three important parts:

  • The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • The hospital or rehabilitation facility must provide an explanation and live instruction of the medical tasks - such as medication management, injections, wound care and transfers - that the family caregiver will perform at home.

AARP state offices are now working to pass the CARE Act, with two states out in front.

In Oklahoma, AARP fought successfully for 872,000 family caregivers, passing Senate Bill 1536 - the state version of the CARE Act. The measure was signed into law by Gov. Mary Fallin. A new survey shows overwhelming support for the CARE Act among Oklahomans:
 

  • Nearly all (98.1 percent) likely Oklahoma voters surveyed think it’s important for hospital personnel to explain and demonstrate any medical or nursing tasks that family caregivers would need to perform after a patient returns home.
  • Three out of four likely Oklahoma voters (74.9 percent) support proposed legislation that would require hospitals to allow patients to: 1) identify a designated family caregiver, and 2) provide that caregiver with adequate instruction for the care of the patient following the patient’s discharge from the hospital.

In Hawaii, the state legislature created a task force to determine how best to implement the CARE Act in support of the state’s 247,000 family caregivers.  By passing the CARE Act, Hawaii would be supporting its 247,000 family caregivers, such as Ken Takeya, who testified in support of the bill. He said: “The passage of this bill is vital as it addresses the many frustrations I have encountered caring for my wife.”

I will be keeping a close eye on Hawaii and Oklahoma this week from San Diego, where I will be presenting to the American Society on Aging about the importance of supporting family caregivers. I have the pleasure to speak on Thursday from 1 to 2:30 p.m. with my colleagues including Susan Reinhard, AARP senior vice president and head of its Public Policy Institute; Shanna Lapsley, associate state director for multicultural outreach at AARP New Mexico; and Deanna Casey, associate state director for advocacy at AARP Rhode Island.

To stay up to date or get involved with our caregiving advocacy in the states, sign up for the AARP Advocates e-newsletter or visit your state Web page. Follow me on Twitter @RoamTheDomes for more news on caregiving and other advocacy across the country.

If you are a family caregiver, you’re not alone. To find the tools and support you need, as well as ways to connect with other caregivers, visit the AARP Caregiver Resource Center.

*Updated 7/22/14

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