Caregiving makes us more humane. By building humanity the caregiver humanises the world. But caregiving is not easy. It takes a largely unrecognized psychological toll. Still we care to give it, because it is a fulfilling activity. The expectations and responsibilities of caregiving are very demanding. Patience, tact, diplomacy and compassion are essential elements of caregiving. No one likes change, particularly the care-receivers. No one likes raised voices. A caregiver’s life can be so stressful. One may need to reenergise, recoup, regroup, and recharge one’s batteries to remain effective. If you are a caregiver, it is essential that you also take care of yourself. There is no better support system than family and friends. This support system understands the reasons of your over-stress, and also knows the ways to mitigate them. Support from the family and friends are needed, both to the caregiver and care receiver, to provide emotional support and moral solidarity.
Caregiving, from the perspective of a doctor-patient relation, is more than the medical technology involved in it. “The balance between science/technology and art has shifted so far toward the former that the latter is a pale shadow, a fragile remnant of what had for centuries been crucial to the work of the doctor,” writes Arthur Kleinman. A caregiver requires something besides scientific and technological training. Time spent with the patient is important; doing the quickest physical examination and writing a prescription is not enough.
Kleinman’s own experience as a primary caregiver to his wife, a neurodegenerative disorder patient, has convinced him that “Caregiving is about skillednursing, competent social work, rehabilitation efforts of physical and occupational therapists, and the hard physical work of home healthcare aides.” Kleinman’s wife was a patient of atypical form of Alzheimer’s disease. She was functionally blind. She often misinterpreted things, like treating a chair as if it were a table. She was a care-giver of the family. It is not easy to become a care-receiver from a caregiver. As Kleinman writes, there is so much of her personality still present. “I still cannot accept to treat her as if she can no longer share the sensibility and narrative we have created, and yet, more and more frequently, she can’t. She is happy much of the time. It is I, the caregiver, who, more often, am sad and despairing.” The caregiver knows what lies ahead. There is feeling of loss, anger, and frustration. There is a special kind of pain. There also is a deepening sense of responsibility. There is frustration that many things are beyond our control.
Caregiving consumes time, energy, and financial resources. It needs extra strength and determination. There is a likelihood of caregiver becoming desperate. The desperation can break the caregiver. Caregiving for the economists is a ‘burden’, and for the psychologists it is ‘coping’. Physicians conceive it as a clinical skill. Each of these perspectives represents part of the picture. Caregiving for Kleinman is an existential quality of what it is to be a human being. He thinks doctors need to master the art of acknowledging and affirming that the patients are a suffering human being. He wants doctors to device alternative contexts and practices for responding to calamity. Doctors need to converse more with the patients. In short, doctors are required to better understand, besides science, the art of medicine.