Life on Wheels by Gary Karp Page A

bottom line have weighed in, pushing to get clients home faster and, many critics contend, sicker. The result has been an explosion in family caregiving. A poll by the National Alliance for Caregiving found that the number of people providing free care to a family member grew to 21 million, up from 7 million in 1987. 7
    Some families have a great deal of trouble with the caregiver role. It is, at the least, a financial strain. Often at least one family member must leave a paying job to perform a caregiver role that produces no income. Caregivers take on medical responsibilities, such as assistance with a bowel program or suctioning secretions for a ventilator user, but might not have received sufficient training. They might have an emotionally difficult time performing such intimate and invasive tasks.
    Many people who use personal assistance say that they would not recommend a family member playing the role of primary caregiver, especially a spouse. It alters—sometimes seriously strains—family relationships. When a parent assists an adult child, the quality of the relationship can revert to when the adult child was young, as the protective instincts of the parent resurface. Even when a parent-as-caregiver relationship succeeds, parents will have increasing difficulty with the physical tasks as they age.
    Some families succeed by sharing the caregiver tasks among parents and siblings. No one person is overwhelmed, they learn to perform tasks and procedures effectively, and everyone knows the first priority is preserving the disabled family member’s rights of decisionmaking and control—and dignity. People can discover that tasks that they considered unpleasant—like providing bowel assistance—become more accepted with experience:
     
    I know a family with a son who has significant cerebral palsy. He is unable to walk or speak. He has deformities in his spine and arms and is spastic, yet with the support of his large family, he has graduated with high grades from high school, uses computer technology by means of a mouth switch, and travels often with the family in a specially outfitted recreational vehicle. They even developed a special system of communication in which he clicks with his mouth in response to a system of prompts. The father says that he wouldn’t change a thing, that the experience has been a remarkable gift for his family.
    When the caregiver role falls to a family, there are choices about how to approach it and what to make of it. With appropriate training and support, a family can settle into a routine that is not burdensome and makes a full life possible for their loved one. Chapter 2, Healthy Disability, contains information about personal assistance services.
    Use Outside Resources
     
    Rehab is only the start of the process: there is more to accomplish. You might not be a resident at a rehab hospital anymore, but your insurance might cover continuing therapy on an outpatient basis. Even if you live in a different city from the major rehab hospital where you stayed, there are an increasing number of small rehab hospitals or therapy groups that can work with you closer to home.
    There is likely to be a Center for Independent Living (CIL) in your area. Although not a rehab hospital, a CIL can help in many ways. If you are struggling with your insurer about coverage for continued therapy, the CIL might be able to offer you advocacy training and support to gain funding for your needs, possibly even for home adaptation. Many CILs conduct support group meetings that give you the chance to meet others who share your circumstances. You get to learn from the pros, who will gladly share their “tricks of the trade.” Of course, each CIL has its own programs. Offerings vary widely.
    Just because the insurance industry calls the shots on how long you get to stay in rehab does not mean that you are denied the chance to be as strong and active as you can be. It just means you have to do more of it on your