Caregiving, whether by a family member or professional, is a complicated subject. Here are some basics of what you need to know about this often necessary relationship.
By Rob Ingraham
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, Oklahoma, and Robin M. Kohn, MSW, LCSW, program coordinator and instructor, University of Central Florida School of Social Work.
Needs Assessment
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, and cooking. Communication assistance, such as reading or writing, should be noted and mobility requirements, such as driving or 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, buy 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.
Hiring and Firing
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 but, say Adcock and Kohn, “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. Be sure to hire and train a reliable backup caregiver, as well. “Notify acceptable candidates that you could not hire and save their names and numbers for future reference,” they add.
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 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.”
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.
Loved Ones as Caregivers
When a spouse or family member assumes the duties of caregiver, the recipient of the care should be aware of 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 nonessential 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 fi nances 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).
Rob Ingraham is senior editor.
