By Rob Ingraham and Tom Scott
Caregivers 101
With about 44 million people in America acting as caregivers for relatives, spouses, or friends with disabilities—and the looming retirement of over 75 million “baby boomers”—the issue of obtaining and sustaining competent caregivers is rapidly becoming a major question for families across the country.
To provide a basic overview of considerations for people with disabilities seeking to hire a caregiver and issues for spouses, friends, and family who are, or expect to be, acting as caregivers, United Spinal’s consumer conference, Creating Your Future: Living With a Disability, offered “Caregivers 101,” presented by Rebecca Adcock, PhD, SCI Services, INTEGRIS Jim Thorpe Rehabilitation Hospital, Oklahoma City, OK, and Robin M. Kohn, MSW, LCSW, program coordinator and instructor, University of Central Florida School of Social Work.
When seeking a caregiver, Adcock and Kohn urged individuals to clearly identify their needs. These may include personal assistance with bathing, hygiene, bowel and bladder care, grooming, transfers, feeding, and medications. Household duties should be specified, such as shopping, cleaning, laundry, cooking. Communication assistance should be noted, such as reading or writing, and mobility requirements, such as driving escorting to appointments, must be spelled out.
To locate candidates, employers should contact home health agencies, ask other people in your local area who may have had experience with caregivers, (i.e., “word of mouth”) and, if necessary, newspaper advertisements. An example of a typical ad would be:
PERSONAL ASSISTANT for 25 year old disabled male Help w/personal hygiene, dressing, transport to work, 6 to 10 am M-F. No exp necessary. Will train. 555-354-2976
When interviewing candidates, Adcock suggested that employers prepare a formal application form that prospective caregivers will need to fill out, and include the following information: Name, address, phone number, cell number, e-mail address, Social Security number, driver’s license number, and a space for the names of references.
During interviews, employers should describe the job in detail, giving candidates detailed information about exactly what will be required of them. And while it’s important to get feedback from candidates, employers should avoid letting them start to “interview you.”
Employers are urged to seek advice from family and friends and “don’t underestimate your ‘gut’ feeling about a candidate. “If a person doesn’t feel right, even if you can’t articulate a reason, he or she is probably not right for the job.”
Adcock and Kohn suggest offering the job on a trial basis, and to be sure to hire and train a reliable backup caregiver. “And notify acceptable candidates that you could not hire and save their names and numbers for future reference.”
When training a new caregiver, it’s important to express your wants and needs at the outset and to establish periodic formal reviews of your caregiver’s performance. Adcock suggests a review after the first two weeks, then at 90 days, at six months, and annually thereafter.
It’s also important to show appreciation for good work—”please” and “thank you” go a long way, they said. They also recommend sending a card or gift certificate if merited, working in raises and bonuses, and paying pay for an occasional dinner or movie that you and your caregiver might enjoy together.
Provide feedback in a positive manner and try to be aware of the time needed for your caregiver to complete tasks. Adcock and Kohn also suggested asking for assistance in “chunks.” For example, a typical request might be phrased, “Please help me with something to drink and set me up with a, b, & c before you leave the room to clean the kitchen.”
And while it’s an unpleasant task, sometimes an employee does not work out as planned and the relationship must be terminated. Adcock suggests that employers have a family member or friend on hand and to clearly explain why you can no longer employ the individual. She also said to be sure all keys are returned and that locks and/or key pad codes changed immediately.
When a spouse or family member assumes the duties of caregiver, the recipient of the care should be aware their loved ones’ time, their need to rest, and try to help out in any way possible, such as making phone calls or other simple needs. The recipient should also be willing to share, let someone else take over care to give the loved one a break. Adcock noted, “Plan ahead, but learn to be flexible; be aware of your own frustrations and any tendencies to ‘take it out’ on your loved ones.” Kohn added that recipients should encourage, and listen to, the feelings of others and seek a support group to talk about feelings. “As much as someone loves you, they cannot read your mind. Be comfortable with being told ‘no’ to an occasional non-essential request. Work with your loved one to be part of the solution, not the problem.”
Adcock and Kohn also explained that family members will have concerns about finances and the impact of the disability on the family budget; they’ll naturally question their ability to be a caregiver; for spouses, sexuality and sexual function will be a concern, as well as adjusting to the unexpected change in family roles; there will be feelings of isolation and uncertainty about the future; family members will have to adjust to changes in personality that a disability can result in; they will have to adapt to major schedule changes and there will likely be fears that further health issues may be on the horizon.
For caregivers, planning and problem solving are important skills and being organized on a daily basis and ready to handle unexpected situations will reduce stress and help a caregiver care for his or her loved one. Kohn suggests that caregivers plan their day and assign priorities and realistic goals. “Identify friends and neighbors or other relatives that would be willing to help. Pace yourself—don’t work to the point of exhaustion. Set limits and stick to them. Learn to say no.” And it’s also important for caregivers to develop partnerships with the loved one’s health care provider, insurance companies, etc.
The warning signs that a caregiver is under too much stress are denial, anger, social withdrawal, anxiety depression, exhaustion, irritability, lack of concentration, health problems, and sleeplessness. One important solution to caregiver “burnout” is the growing concept of “respite care” where caregivers can take time off from their responsibilities to relieve stress. Kohn quoted a definition of respite care from researchers Teresa Modnick, Gina Kemp, MA, and Monika White, PhD: “Respite care is designed to provide caregivers with planned, temporary, intermittent, substitute care, allowing for relief from the daily responsibilities of caring for the care recipient. Respite care is essential for all caregivers, whether they work in a caregiving facility or at home with family members or close friends.”
For more detailed information and more specific suggestions regarding caregiving, Kohn also strongly recommended a recent book on the subject: Caregivers and Personal Assistants: How to Find, Hire, and Manage the People Who Help You (Or Your Loved One!) by Alfred H. DeGraff, MA, SEA, published by Saratoga Access Publications, 2002. (ISBN-13: 978-0962110610).
From War Theater to Community Re-entry: Challenges of Polytrauma Rehabilitation
Glenn Curtiss, PhD, clinical neuropsychologist at the James A. Haley VA Medical Center and Jay M. Uomoto, PhD, director of the Center for Polytrauma Care at the VA Puget Sound Healthcare System in Seattle discussed how polytrauma has impacted the lives of U.S. soldiers serving in recent conflicts in Iraq and Afghanistan and the need for coordinated and continued care, community re-entry, and long-term follow-up consultation for these individuals beyond acute rehabilitation.
“The term polytrauma developed from clinical observations that we were seeing when people were returning from the theater of war. These individuals had multiple injuries to multiple systems commonly from blasts and explosions [i.e., improvised explosive devices and rocket-propelled grenades]. They were life-threatening injuries and the probability of long-term disability was great,” said Curtiss. “Polytrauma tries to capture the severity and ramifications of these multiple traumatic injuries.”
On the battlefield, polytrauma usually occurs when soldiers are exposed to high-pressure waves, explosive fragments, and falling debris from blasts or explosions. Injuries can vary and include traumatic brain injuries (TBI); spinal cord injuries (SCI); loss of limbs, burns, fractures, blindness; hearing loss; as well as cognitive disorders (i.e., post traumatic stress disorder [PTSD]). There are complex factors that determine the types of injuries an individual will sustain and their severity (i.e., composition of explosive devices, proximity to explosion, structures or barriers near blast, type of body armor worn, etc.).
Recent studies show that for every death that occurs in Iraq or Afghanistan there is about a 10- to 20-fold number of U.S. service members returning with at least moderate to severe TBI.
Currently, there are four centers in the US that specialize in polytrauma rehabilitation. They are managed by the U.S. Department of Veterans Affairs and are located in Minneapolis, Minnesota; Palo Alto, California; Richmond, Virginia; and Tampa, Florida, with an additional 17 “Polytrauma Network Sites” nationwide that assist with outpatient and long-term follow-up care. Established in 2005, the VHA Polytrauma System of Care is composed of an integrated team of health care professionals including case managers, physicians, nurses, therapists, and psychologists that must work collaboratively to create a continuum of services for individuals who were injured in the Iraq and Afghanistan war, but uniquely have sustained multiple-simultaneous injuries with resultant disability.
The job of the polytrauma center is to provide a seamless transition for service members with polytraumatic injuries from military facilities to the VA. They offer a variety of programs for brain, spinal cord, and blast injuries, as well as family, caregiver, mental health, and consulting services and support. Emphasis is also placed on family and caregiver intervention and logistical, clinical, and emotional support is provided (www.polytrauma.va.gov/family_support.asp). A majority of the centers are affiliated with teaching hospitals that can provide expertise and assistance when needed.
Additionally, the VA is working vigorously to coordinate care between service lines within each of the polytrauma facilities due to the large amount of care providers and case managers involved with each patient, the complexity of treatment, and the distance between the patient and available support.
One of the major challenges in treating this patient population is a delay of many veterans and service members with polytraumatic injuries from entering the polytrauma system of care. “It sometimes takes a long time to get some of these individuals into the system. This happens frequently with the National Guard and Army Reservists, partly because there is a health screening form that all soldiers have to fill out when they [return from combat] which includes a checklist of symptoms. If you check yes to any of them you end up having to stay and may get transferred to a medical facility. You are then separated for longer periods of time from your family. So what are these people doing? Well they are saying ‘No, I have no problems,’ and return home. And these are patients with significant muscular-skeletal injuries, significant headaches and visual and hearing impairments, and so forth. This is clearly a problem within the system where we have to encourage a lot of eyes and ears in the community to identify these individuals to make sure they are connecting with their local VAs,” Uomoto said.
Adjusting to civilian life is another major challenge. “Many think, ‘well you know I’m coming back from war, I just need some time to adjust,” Uomoto explained. “It’s after 6 to 12 months when family members and the veteran may start thinking, ‘Things aren’t right here; things are really falling apart.’ And then they enter the system.”
Some service members experiencing significant pain problems and PTSD may also rely on self-medication. It has been reported that alcohol use is rampant within the population. “I’m sometimes shocked by the quantity of alcohol being consumed by some of these individuals and that they are even able to stand straight,” Uomoto added.
Geographic challenges, reluctance to enter the VA, and constraints on leaving work are other factors for many veterans and service members. “Long distance travel to rehab centers can be very burdensome. For many National Guard and Reservists, they go back to work after they are discharged,” Uomoto said. “In many cases it is very difficult to take time off from work. It means money out of their pocket. Currently there are no means by which these individuals get compensated for time off for medical appointments.”
According to Curtis, there are no statistics presently available on the prevalence of polytraumatic injuries among U.S. soldiers. “The data actually are not applicable. We as lead polytrauma centers send our data up to Washington and it is then classified as top secret. So it’s hard to get information on how many people who are exposed to blasts, sustain brain injuries or spinal cord injuries,” Curtis said.
Although polytrauma centers have made great strides in improving patient outcomes, more facilities are needed to care for this increasing veteran population. Service members who have completed acute rehabilitation care have lifelong care needs and complex health care issues that must be addressed through an integrated system of care that tracks these individuals and offers expert guidance and treatment strategies.
For more information on the VA’s polytrauma rehabilitation centers, please visit www.polytrauma.va.gov/index.asp.
Obesity in SCI: Fat Gone Wild
Obesity within the SCI community is at epidemic proportions. Two thirds of individuals with SCI are obese. There is also a significant link between obesity and metabolic syndrome in people with SCI. Metabolic syndrome is a combination of medical disorders that increases a person’s risk of developing cardiovascular disease and diabetes.
David R. Gater, MD, PhD, director of SCI Medicine at Hunter Holmes McGuire VA Medical Center, explained that many individuals with SCI are obese due to losing a large amount of muscle mass relatively quickly after their injury; a decrease in bone density; a blunted metabolism and sympathetic nervous system; and the development of a positive energy balance.
“This is one of those situations where positive is negative. Positive energy means that you are accumulating energy and gaining adipose tissue or fat. That adipose tissue then mediates components of what we know as metabolic syndrome. As you increase adipose sites it increases insulin resistance, mediates hypertension, and causes dyslipidemia [disruption in the amount of lipids or fatty acids in the blood], thromboembolism [formation in a blood vessel of a clot that breaks loose and is carried by the blood stream to plug another vessel], and subsequently coronary artery disease,” Gater said.
Individuals should be expending as many calories as they take in, which helps maintain body weight. At rest the body burns off a large percentage of the calories that we expend during the course of the day. Several of our organ systems do most of the work of burning calories—liver, 30%; kidney, 7%; heart, 10%; skeletal muscles, 18-20%; and brain, 20%.
Because skeletal muscle can vary between individuals, the variability for energy expenditure is significantly greater relative to changes in muscle mass. This is a significant factor in SCI obesity. “There is a very tight relationship between fat free mass which includes skeletal muscle and resting energy expenditure. This relationship holds true whether a person is spinal cord injured, or if they’re a child or an adult. The fat free mass basically is going to continue to burn a certain number of calories. So this relationship is very important when we talk about the loss of skeletal muscle and spinal cord injury.”
Health care professionals have utilized the Harris Benedict Equation to determine a person’s energy expenditure needs during the course of the day. This formula uses an individual’s Basal Metabolic Rate (BMR¬¬—the number of calories you’d burn if you stayed in bed all day) and then applies an activity factor to determine your total daily energy expenditure (calories). Gater said, however, that the equation can be problematic when applied to a person with SCI.
“Recently I had a 24-year-old gentleman on our unit with a C-4 complete spinal cord injury. He came to us at 160 lbs. and was 6’1”. So we plugged in the Harris Benedict Equation and it estimated that he would be burning 2,900 kcals per day. Well I was a little suspicious, so we went back and did an indirect calorimetry to determine his resting energy expenditure [Indirect calorimetry is the only accurate and clinically feasible method of measuring energy expenditure. It is called 'indirect' because the caloric burn rate is calculated from a measurement of oxygen uptake. Indirect calorimetry relies on the fact that burning 1 calorie requires 208.06 milliliters of oxygen]. What we found is that he was actually burning 1,208 kcals per day. This represents 1,640 calories excess per day. Over the course of a week he is going to accumulate 3.2 lbs of fat from this excess energy and during the course of a month he is going to gain 14 lbs. of fat if we continue to feed him at current rates,” Gater said.
In many cases, this fat gain can be masked by decreasing muscle mass in people with SCI. Post-injury weight may not fluctuate that much from what the individual had experienced before their injury. Because there are no signs of weight gain, they may mistakenly think their daily caloric intake is fine. This is a very big pitfall for many newly-injured individuals. In actuality the muscle mass they are losing is being replaced with fat. On the scale their weight remains stable. Many of us tend to assume weight gain means fat gain, but this is not always true.
Body mass index (BMI) is also a tool used to identify obesity, but unfortunately, not very useful to people with SCI. “The problem with using BMI alone is that it doesn’t account for muscle mass or fat mass. It just looks at body weight. So you can have a 220 lb. linebacker with 4% body fat and he will appear to be obese by BMI standards. On the other hand you can take a person with spinal cord injury that’s 5’8” and 160 lbs. and he would appear to be normal weight even though he has significantly less muscle mass,” Gater said.
According to Gater, it’s extremely important to look at overall body composition to identify obesity in SCI—how much of the body is fat; how much of the body is nonfat; and of that how much is mineral, muscle, and water. “I think we also really need to focus on behavioral modifications to a greater extent than pharmacological methods for treating metabolic syndrome,” he added.
How should a person with SCI combat obesity? Obtaining a clear understanding of body composition and your percentage of body fat is a good start, as well as discussing your overall health with nutritionists and other health care professionals. Increasing your energy expenditure, changing your diet and eating habits, and increasing exercise and daily activity can also help. One thing to remember, however, when exercising is that upper extremity exercise typically burns much fewer calories than lower extremity exercise, so you may not be burning anywhere near the number of calories with the same amount of effort as you could with lower extremity workouts. So before hitting the gym, consult your doctors to find an SCI exercise program that will work best for you.
Rob Ingraham is senior editor. Tom Scott is staff editor.
