I have worked for nearly 20 years with patients who have been or become disabled, either by injury, disease or through the processes of aging. While some have been disabled temporarily, that is, recovering from an accident or an operation, most have faced a future of continued dependence and care. The distinction between temporary and chronic disability can make all the difference in how one perceives and responds to one’s condition, and to one’s caretaker. What I have to say pertains less to temporarily incapacitated patients, than to the chronic patient.
When I started thinking about this topic, several years ago, I began to recall the good and bad I had witnessed or heard about from my chronically ill patients. I recalled stories of aides whose lack of training, sensitivity, intelligence, or worse, active malevolence, made the lives of my patients more difficult. In some cases, I was able to help in either improving the aides’ performance or in getting rid of them. I also remember stories of aides whose warmth, support and encouragement made it possible for patients to redefine their lives and make them supportable. And sometimes, the very defects between the patient and caretaker made for a vibrant and stimulating encounter which benefitted both.
Patients often tend to see home health aides in black and white terms, or as playing certain roles in their lives. I made a list of the various roles that caretakers can play in the lives of their charges. Sometimes they play more than one, and sometimes they move between roles during each day or over time. The best aides, make use of their role, consciously or not, and may be able to turn a patient’s embittered life around. Here are some of the major roles that I have identified:
- AIDE as Mother
- AIDE as Friend
- AIDE as Servant/Slave
- AIDE as Persecutor
In each of the next 4 blogs, I want to talk in more detail about these four roles, giving examples of AIDES who served these roles in my patients’ minds and what transpired. There are several other, lesser roles that I have noticed and will discuss in the last blogs on this subject.