Have you ever had that disconcerting dream where you're taking a high-stakes test and you panic as you puzzle over the questions, because the material hadn't been covered in class and you don't know the answers? For most of us, that's what it's like to be a caregiver.
Sheila Ramerman's husband of 20 years, Jack Beebe, survived a stroke in November 2008 that paralyzed his left hand, limited the use of his left leg and affected his thought processes, making it difficult to concentrate. After two weeks in the hospital and nearly three months in an in-patient rehabilitation facility, Jack returned home. Although the rehab nurses showed Sheila how to move Jack in and out of his wheelchair and how to handle some of his daily needs, such as dressing and emptying his urine bag, she wasn't prepared to tackle the “totality” of his daily care. The social worker at the rehab facility told her, “A lot of this you'll have to figure out on your own.”
“Once we got home, it was just us,” recalls Sheila. In the rehab facility “there had always been somebody there in case I had problems.” Sheila knew she needed help.
Two weeks after Jack was discharged from rehab, “it became very quickly apparent that I needed to have somebody in the house,” says Sheila, a self-employed technical writer who works from home in Eugene, OR. “[He requires] almost constant companionship, not necessarily [someone] doing things for him, but just being there to make sure he doesn't hurt himself,” says Sheila, adding, “There wasn't a moment to myself.” She hired a certified nursing assistant to look after him on weekdays.
YOU DON'T KNOW WHAT YOU DON'T KNOW
During any given year, more than 65 million people — an estimated 29 percent of the U.S. population — are thrust into the role of caregiver, providing at least 20 hours of care a week. Whether it's for a chronically ill, disabled or aging relative or friend, many accept the responsibility and challenge of caregiving without any medical training or knowledge. Currently, there are few community resources to teach caregivers the skills they need to know, such as how to lift patients, dispense medications, give injections and change catheters.
Patients are being discharged from hospitals much sooner than in the past — for reasons ranging from insurance policies with limited coverage for hospital stays and new wireless patient management technology that enables healthcare providers to monitor patients at home, by transmitting updates on vitals such as blood pressure, heart rate, glucose levels, weight fluctuations and data from pacemakers to the patient's doctor.
While unpaid family caregivers save the U.S. $375 billion in healthcare costs each year, some of these savings are offset by hospital readmissions — which cost the Medicare program $15 billion — because the healthcare system devotes little time and resources to discharge planning and family caregiver training.
In part because of improper or inadequate caregiving at home, the American Geriatrics Society (AGS) estimates that of the 12 million Medicare patients discharged from the hospital each year, one in five will be re-admitted within 30 days and one in three, within 90 days.
This gap in the chain of care from hospital to rehab facility to home can be dangerous for the caregiver, too. Half of caregivers said their physical health had deteriorated over the past six months, with roughly a third describing their health as “fair” or “poor,” according to a 2005 survey by the California Caregiver Center System, which provided services to more than 17,000 family caregivers in the state. The leading health problems caregivers reported were high blood pressure (31 percent); back and neck problems (26 percent) and arthritis (26 percent).
YOU'RE ON YOUR OWN, KIDDO
Caregivers perform a wide variety of basic tasks, including helping with activities of daily living (dressing and undressing, brushing teeth and bathing); coordinating doctor appointments; ordering, dispensing and monitoring medications; and taking care of bills, insurance paperwork and other important correspondence. What were once routine household tasks become more difficult and time-consuming — for instance, preparing meals that follow specific dietary restrictions, such as low-sodium or low-carbohydrates or changing sheets while the loved one is still in the bed.
In addition, caregivers suddenly find themselves having to change dressings, give injections, empty urine bags, change diapers and perform other tasks that are handled by nurses and other trained professionals at a hospital or rehab facility. Imagine the amount of practice it takes to get the knack of positioning a sling underneath someone lying in bed, hooking the sling up to a patient hoist and lifting the patient off the mattress and placing him or her gently into a wheelchair — without the patient slipping out of the sling, the wheelchair tipping over or the myriad other things that could go wrong.
“Society doesn't appreciate the 24/7 nature of [the caregiving] role, the emotional strain and some of the physical difficulties like lifting or turning a loved one,” says Charles Cutler, M.D., chair of the board of governors for the American College of Physicians and an internist at Norristown Internal Medicine in Norristown, PA. “People who haven't gone through a situation where a loved one is ill often think the role of a caregiver is easy.”
The days of caregiving provided by doctors or even nurses are long gone, says Arthur Kleinman, M.D., professor of medical anthropology and psychiatry at Harvard Medical School, adding that this role now belongs to nurses' aides and patients' families and their social network.
He believes it's in everyone's best interest to give caregivers the knowledge and resources to care for their loved ones. “If there was even a 10 percent [decrease] in the caregiving given by families, the medical system would be overwhelmed by [elder care] in the “U.S.,” he says.
As president of the American Geriatrics Society and chief of geriatrics at Upstate Medical University in Syracuse, NY, Sharon Brangman, M.D., expresses a similar concern. “Our health care system doesn't have the ability to provide a lot of this chronic care that people need, so it relies on family to fill in this gap,” she says.
Noting that “it can be a full time job to figure [caregiving] out,” Brangman insists that families should not accept the hospital discharge until they are comfortable with the care they must provide and a plan is in place to provide that care. “Hospitals cannot say to you, ‘He's ready to go and it's up to you how to figure it out and how to do it’. They are supposed to provide discharge planners who work with the family to set up a safe discharge plan and [explore local] services.”
But that doesn't always happen, and there are a variety of disease-specific organizations (such as the American Heart Association and the American Diabetes Association), caregiver associations (such as the American Association for Caregiver Education and the National Family Caregivers Association) and community-based agencies (such as the local Area Agency on Aging) that caregivers can turn to for guidance and support. Local rehab facilities may also offer training, and your internist or primary care physician may be able to put you in touch with an experienced caregiver who can mentor you.
In some cases, Medicare, Medicaid, and private insurance plans will pay for a nurse to visit a patient's home several times a week for up to two or three weeks to assist in the transition from professional to home care, even if there is no need for skilled care, such as IV medication or wound care, explains Kay Kendall, M.S.W., L.I.S.W., who is a senior social worker on the Cleveland Clinic's heart transplant and mechanical cardiac assist device team. She advises caregivers to take advantage of these visits, and ask to be shown how to perform daily tasks.
“Caregivers may be much more comfortable in their own homes and [more] receptive to [learning] at home rather than having a huge amount of information presented to them at discharge,” says Kendall, who co-authored Comfort of Home, a book for caregivers of heart failure patients.
For his part, Cutler believes federal and state governments could do a better job of creating and promoting caregiving services. He adds, that considering everything they do, “caregivers are the real heroes of our culture. They deserve better recognition, better appreciation and better resources.”
THERE ARE NO “PERFECT PATIENTS”
To further complicate matters for caregivers, patients may not cooperate — sometimes they can't, and sometimes they won't — because of cognitive, behavioral or emotional issues associated with stroke, diabetes or other medical conditions.
“How they're feeling is often beyond their control,” says internist Charles Cutler, M.D. Some patients may become difficult, upset, angry, even hostile or violent, because they're afraid of dying, suffering or being a burden to their family, he says.
When caregivers are not told what to expect, they may become baffled or resentful that things are harder than they need to be.
For instance, a stroke patient may occasionally “forget” how to swallow food, “pouching” it instead, and then regurgitating it. Having spent the better part of an hour feeding the patient a pureed entrée, it can be demoralizing to the caregiver — or worse — to see the specially prepared food being brought up and then having to change and clean the patient. Since some of these behaviors may be short-lived, there will be good days and bad days, assures Cutler.
▪ American Association for Caregiver Education Publishes “The Family Caregiver Practical Problem Solving Manual,” and provides resources to professionals who train family caregivers 561-482-0086 or www.caregivered.org
▪ American Red Cross Offers classes and related study guides ($24.95 and $26.50) for family caregivers, as well as “The Family Caregiving Guide” video or DVD ($45.00) www.RedCross.org/training
▪ Council for Health Education and Development, LLC Offers videos or DVDs on basic caregiving skills ($95.00). People who live in the Houston area can also take free hands-on classes to supplement the videos and DVDs 877-747-1542 or www.caregivertraining.org
▪ Family Caregiver Alliance Provides a variety of free online resources for family caregivers, such as Telecaregiving Workshops 800-445-8106 or www.caregiver.org
▪ Medifecta Healthcare Training Offers 25 online videos ($12.00 each) that address practical caregiving skills. The videos are sometimes provided for free at public libraries or Area Agencies on Aging 888-846-7008 or www.medifecta.com
▪ National Association of Area Agencies on Aging Offers a variety of online resources for older adults, as well as a caregiving series that highlights support strategies 202-872-0888 or www.n4a.org
▪ National Family Caregivers Association Offers information and educational materials for family caregivers, as well as online forums and e-communities for caregivers to connect with one another 800-896-3650 or http://www.familycaregiving101.org/
▪ United Hospital Fund Offers “Next Step in Care” guides and checklists to help family caregivers and healthcare providers plan and implement the transitioning of a patient to home care; these materials are available in English, Spanish, Chinese and Russian www.nextstepincare.org
▪ University of North Carolina Offers “Bathing Without a Battle,” a DVD and CD-ROM package ($60.00) and book ($49.00) that teaches caregivers various ways to bathe a patient (including showering, tub-bathing, in-room bathing) and to wash his or her hair. www.bathingwithoutabattle.unc.edu
© 2011 American Heart Association, Inc.