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Caring for Our Spouses
Posted By Elaine Ryan On April 14, 2014 @ 1:10 pm In Where We Stand | Comments Disabled
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:
“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:
To help all family caregivers, AARP is fighting to pass the CARE Act – in Oklahoma , Senate Bill 1536. This bill would require hospitals to:
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 hospital readmissions  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.
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.
Article printed from AARP: http://blog.aarp.org
URL to article: http://blog.aarp.org/2014/04/14/caring-for-our-spouses/
URLs in this post:
 SB 1536: http://www.okhouse.gov/Media/ShowStory.aspx?MediaNewsID=4905&sf25406066=1
 Meet the Mitchems and the Shapards:: http://www.pbs.org/newshour/bb/advocating-care-home-caregivers/#.U0u4fdfONaQ.twitter
 Caregiver Advise, Record, Enable (CARE) Act.: http://blog.aarp.org/2014/03/10/the-care-act-caring-for-family-caregivers/
 42 million family caregivers nationwide,: http://blog.aarp.org/2014/02/24/fighting-for-family-caregivers/
 Image: http://blog.aarp.org/wp-content/uploads/2014/04/blog-pic-oklahoma-300x2211.jpg
 A new report by the AARP Public Policy Institute and the United Hospital Fund: http://www.aarp.org/home-family/caregiving/info-04-2014/family-caregivers-providing-complex-chronic-care-to-spouses-AARP-ppi-health.html
 is fighting to pass the CARE Act – in Oklahoma: http://states.aarp.org/unsung-unselfish-undertrained-family-caregivers/
 hospital readmissions: http://blog.aarp.org/wp-content/uploads/2014/04/Caregiving-Hospital-Readmissions-Factsheet.pdf
 [See where your state stands]: http://www.kaiserhealthnews.org/stories/2013/august/02/readmission-penalties-by-state-year-two.aspx
 pollster: http://soonerpoll.com/
 Hawaii: http://states.aarp.org/is-your-legislator-a-caregiver-champion/
 New Jersey: http://states.aarp.org/category/new-jersey/
 Illinois: http://states.aarp.org/category/illinois/
 @RoamTheDomes: https://twitter.com/RoamtheDomes
 advocacy initiatives across the country: http://blog.aarp.org/2014/02/17/aarp-announces-2014-advocacy-agenda-across-the-states/
 AARP Advocates e-newsletter : http://action.aarp.org/site/PageServer?pagename=Get_Involved&intcmp=HP-LN-sec9-pos1
 state Web page: http://www.aarp.org/states/
 Caregiver Resource Center: http://www.aarp.org/home-family/caregiving/
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