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For the 42 million Americans who take care of loved ones at home, the responsibilities of care -- once the purview of trained nurses -- have become increasingly complex. AARP has begun to advocate for greater caregiver support through public policy and legislation, but the health care industry may be wary of additional regulation. Special correspondent Kathleen McCleery reports.
Next: Americans are being released from hospitals quicker and sicker. That's put new demands on the family members who care for them.
Special correspondent Kathleen McCleery reports from Oklahoma as part of our Taking Care series.
Make sure we get all of the air out.
Cheryl Mitchem never imagined retirement would look like this. When she and her husband, Alphus, stopped working, they planned travel and other adventures. Then, a year ago, a severe headache and a diagnosis of a malignant brain tumor upended the family's dreams.
Glioblastoma, which is a form of malignant brain cancer, but it stretches all over the whole brain. It's not confined to one area.
Their 37-year-old daughter, Kristin, left her job as a pastry chef in North Carolina to come home to Oklahoma City to help.
You want me to get you something to eat?
You spend your whole life kind of in the care of your parents, and now it's — that role has changed, where I'm kind of, you know, providing care, and making sure that he has everything he needs.
Cheryl and Kristin are among the 42 million Americans caring for loved ones at home. And the tasks they perform have become increasingly complex, cleaning a feeding tube, for instance, capping a catheter line, checking blood sugar, administering an injection, and managing multiple prescriptions.
When we have to flush his PICC line, or clean his PEG tube, or take his blood glucose or his blood pressure, you know, none of us went to school for that. I mean, we're not educated that way.
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.
Family members do 90 percent of caregiving, and nearly half perform chores once limited to trained nurses. That's according to an AARP sampling of more than 1,600 caregivers nationwide.
Hey, mom. Did you take your medicine?
Oh, gosh, I forget again.
Her nurse, her personal assistant.
That trend has prompted the organization to focus attention on caregivers and push state legislators to pass what they call the Care Act.
Oklahoma State Director Sean Voskuhl is urging members to support it.
SEAN VOSKUHL, State Director, AARP Oklahoma:
So, AARP has been really taking a hard look and making this a priority, but we also thought it was important to take a public policy approach, and giving a legal designation of a family caregiver in that process, because we find so many folks that are burdened, overwhelmed, and they want to know, what do I do, where do I go for help?
The bill would require the hospitals to list the caregiver on the patient's chart, to notify him or her before the patient is discharged, and to mandate training for the skills they will need when the patient comes home.
Welcome to the state Capitol.
In Oklahoma, its sponsor, state Senator Brian Crain, understands the toll caregiving can take.
BRIAN CRAIN, R, Oklahoma State Senator:
My mother, the last five years of her life, suffered from Alzheimer's. And I know firsthand, as well as my — the rest of my family, the long goodbye that is Alzheimer's. My father, though, served as her caregiver.
The Care Act passed the state Senate in February and is being considered in the House.
We recognize, as a state, that everyone needs to have a caregiver if they want one, and 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.
Oklahoma lawmakers aren't alone in their quest to support family caregivers. Hawaii, Illinois and New Jersey are all considering their own bills. But here and elsewhere, the opposition is coming mainly from those who will have to abide by new rules.
LAWANNA HALSTEAD, Vice President, Oklahoma Hospital Association:
We just do not feel like that this is a necessary piece of legislation.
LaWanna Halstead is a vice president for the Oklahoma Hospital Association. She's also a registered nurse. And she argues hospitals already follow strict guidelines, including Medicare regulations, that require a smooth transition when patients are released.
There is a multipage chapter about discharge planning. If you are going to participate with Medicare, meaning you're going to receive Medicare funding for taking care of patients, then you have to follow these conditions.
Hospitals put in place multiple things, such as calling the patients 24 hours and 48 hours after they are discharged, to ask them if they have any further questions. Did you in fact get your prescriptions filled? Do you remember that you had this physician visit? Do you remember what your physical activity is and what your diet is?
A sampling of 400 likely voters in January showed strong support in Oklahoma for caregivers and for the new legislation.
For pollster Bill Shapard, the issue hit home just before his data came in.
BILL SHAPARD JR., SoonerPoll.com:
My father fell and had a severe concussion, and I think for the — what was impactful for me was, is that I got to see beyond just what I'm asking Oklahoma voters to consider through polling. I got to live it.
His mother, Veda Shapard, faced a flurry of confusing information when her husband was ready to come home.
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.
BILL SHAPARD JR.:
So, it was pretty — pretty intense moments there for a while, because you didn't know what to do.
It's a little overwhelming.
At St. Anthony Hospital, Dr. Robert Rader coordinates a patient's stay from admission to discharge. He says his staff does a good job instructing caregivers, but he worries about the possible impact of new regulations.
DR. ROBERT RADER, St. Anthony Hospital, Oklahoma City:
Hospitals are really getting more and more crunched for resources. And so I'm afraid that patient care might suffer as we begin to fragment things, trying to check boxes on another form that we have to check. I really think we need to not be distracted from the care that's being taken to the patient.
Not getting the right care is one reason some patients return to the hospital; 58 percent of Oklahoma hospitals were penalized by Medicare and Medicaid for excessive readmissions. That's about average nationally. The bill's backers hope training caregivers will help reduce those multiple stays.
The Mitchems say they have already made serious mistakes that landed Alphus back in the hospital.
There have been some instances. With one of the medications that we gave him, there were certain side effects that we needed to be looking out for, and we weren't told that we needed to look for those things. And so he had, like, a reaction to one of those medications, and I felt really bad because the morning that we took him back to the emergency room, it was my morning to give that medication, and I did.
But Representative Doug Cox, an emergency room doctor himself, has reservations about whether legislation will make a difference.
DOUG COX, R, Oklahoma State Representative:
I'm not sure that we need to put another mandate on the hospitals, when they're kind of moving in that direction anyway. As you know, Medicare and now even private insurance companies are holding hospitals liable for patients that are readmitted within a close time of discharge.
And so hospitals are being even more diligent about teaching home care at time of dismissal to try to prevent those readmissions.
Family caregivers don't get paid, but the Congressional Budget Office put a price tag on all those contributions, worth $234 billion to the U.S. economy in 2011. Those jobs may have to be done by paid workers in the decades ahead.
As the baby boomers age, they will move from providing care to needing it. And because the next generation is smaller, the demand for and on family caregivers is sure to increase.
How many hours a week does the typical long-term caregiver donate to a sick parent or spouse? We have a by-the-numbers breakdown on what kind of impact this can have on their finances. That's on our home page.
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