BREAKING UPDATE 5/15: Oklahoma becomes the first state in the nation to enact the CARE Act! SB 1536, also known as the CARE Act, has been signed by Governor Mary Fallin and will take effect November 1, 2014. The bill will help the 600,000 family caregivers in Oklahoma when their loved ones go into the hospital and as they transition home.
Cheryl Mitchem cares for her husband, Alphus, who battles brain cancer. She has help from her adult daughter, Kristin - but like so many of the 42 million family caregivers nationwide, Cheryl struggles with the complex medical and nursing tasks she must perform for Alphus. She has had no training to carry out these duties - like managing multiple medications, cleaning a feeding tube, and operating specialized medical equipment - not even when her husband was discharged from the hospital and Cheryl needed guidance more than ever. She says:
Cheryl and Alphus Mitchem "What I learned was by watching the nurses. I was never instructed how to do anything. They never did demonstrations, had me try anything. I don't feel like I had enough training at all for this. We have kind of learned by trial and error."
Unfortunately, such trial and error led to another hospitalization for Alphus.
Cheryl's experience, featured recently by the PBS NewsHour, shines a bright light on the tough challenges family caregivers face - especially when it comes to the medical care they provide for their loved ones. A new report by the AARP Public Policy Institute and the United Hospital Fund on spousal caregiving, released today, tells us that Cheryl is not alone as she cares for her husband:
- 1 in 5 family caregivers is a spouse.
- Spousal caregivers on average are older, have less education and less income and are less likely to be employed than nonspousal caregivers.
- They are more likely than nonspousal caregivers to provide assistance with medical/nursing tasks such as medication management and wound care.
- They are less likely to receive support from family and friends and are far less likely to have home visits from health care professionals and aides.
To help all family caregivers, AARP is fighting to pass the CARE Act - in Oklahoma, Senate Bill 1536. This bill would require hospitals to:
- identify a designated family caregiver when a patient is admitted
- notify the caregiver when their loved one is to be moved or discharged
- provide that caregiver with adequate instruction for the care of the patient following the patient's discharge from the hospital.
While the CARE Act has passed the Oklahoma Senate and is being considered in the House, full passage can't be soon enough for the Mitchems and many other Oklahomans.
Sean Voskuhl, state director of AARP Oklahoma, explains:
"We find so many folks that are burdened, overwhelmed, and they want to know: What do I do? Where do I go for help?"
Take Veda Shapard, who became the caregiver for her husband after he suffered a concussion from a serious fall; she says:
"Leaving the hospital was a bit of a challenge. I like to think of myself as somebody that's detail oriented, but the nurse came in and had all of the discharge papers. There was 22 pages of information for me. It's a little overwhelming."
Oklahoma State Sen. Brian Crain, the sponsor of Senate Bill 1536, knows firsthand the important role family caregivers serve; his father cared for his mother, who had Alzheimer's. Regarding the CARE Act, he says:
"... that caregiver needs to have some understanding of when you're going to be released from the hospital, and what it is that the hospital thinks needs to be done, so that you are not readmitted unnecessarily."
In fact, in 2013, more than 2,000 hospitals - or about two-thirds of all U.S. hospitals - were penalized for excessive Caregiving Hospital Readmissions Factsheet by the Centers for Medicare & Medicaid Services (CMS). [See where your state stands]. Health care experts say caregiver training and engagement is vital to improving care transitions - when patients are discharged from the hospital.
After all, once a patient leaves the hospital or rehabilitation facility, family caregivers are the front line of defense against costly hospital readmissions.
- Nearly all (98.1 percent) likely Oklahoma voters 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. Not a single likely Oklahoma voter surveyed disagreed.
- Three out of four likely Oklahoma voters (74.9 percent) support the proposed legislation that would (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.
For Bill, this survey became personal after his father's fall:
"I got to see beyond just what I'm asking Oklahoma voters to consider through polling. I got to live it."
I'll be keeping an eye on the Oklahoma House, as well as other state legislatures taking on the CARE Act, including those in Hawaii, New Jersey and Illinois. Follow me on Twitter @RoamTheDomes for more news on caregiving and other AARP advocacy initiatives across the country.
If you are a family caregiver, you're not alone.
- 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.
- To find the tools and support you need, as well as ways to connect with other caregivers, visit the AARP Caregiver Resource Center.
Update 3/27/15: The CARE Act is now law in Oklahoma, New Jersey, Virginia and West Virginia.