There are sixteen wooden benches on either side of the hall. Each bench can easily fit four people in crunch time. It is always crunch time. But then, the calculation is not quite right because there are some exceeding weak individuals who lay down on the benches, a little less than the length of their body, because they are curved inwards, as if they were cold. It is the radiation area of a government cancer hospital. All around us, death roams about audaciously in a variety of camouflage. I look at the people around me, those suffering from the disease and those suffering because they love the person who is suffering. This column is written from the standpoint of the caregiver/s “ the family and friends of the patient “ who also have to grapple with the reality of cancer. A research paper published in the Indian Journal of Palliative Care by Anjum S Khan Joad, T C Mayamol and Mohita Chaturvedi seeks to note the experiences of care-givers of terminally ill patients. The researchers note that their responsibilities go beyond transporting patients to hospital, keeping appointments and helping patients in daily activities. More technical jobs such as intravenous injections, maintaining oxygen levels and wound care are few stressful but routine jobs for caregivers.
The internet is full of statistics. India recorded an estimated 3.9 million cancer cases in 2016 according to data on the National Cancer Registry Programme of the Indian Council of Medical Research. The numbers stop mattering and vanish into thin air when someone close is enveloped by the disease. Suddenly, death ceases to be jargon in scientific papers but a hard-hitting personal reality. I love the woman who sits beside me in silent resignation. She joined the household to care for me as an infant and soon became family. Now, she is waiting her turn for radiotherapy. The treatment is palliative, the doctors have said. All her life, she has spent in “collecting good karma” by feeding birds, cats and dogs; even ants. She would put a dot of flour on the kitchen platform and for some time, ants would circle it, taking each minute grain to their secret, faraway dens. When I first saw this ritual, I was stunned. It was bizarre that someone could “feed” ants and then the visual proof of the ants lining up the flour dot each day, as if they were aware of the feeding time, was bizarre. I wouldn’t have believed it if I hadn’t seen it happening right in front of my eyes, day after day. Why should such an innocent soul suffer? In our own way, we suffer along with her.
Medical science has progressed to magical highs and yet, when the word cancer crops up, fear almost immediately follows. Unfortunately, while medicine cannot avert death, it can predict with painful exaction the progress of the disease and even predict a morbid time frame of the remainder of life. The information, as brutal as it is, is unavoidable. The acknowledgement of an end comes sooner or later and it is at such a time that those who will still be alive after their loved one has left forever, feel a desolate bunch of mixed feelings that range from grief, guilt or regret. The same questions that we want to push away keep sneaking in “ What would we do when they are gone? Did we spend enough time with them? Why did we not spend more time with them? No easy answers. Such thoughts pile up at the back of the mind because usually there is no time to process feelings in between the cycle of hospital visits and check-ups. Caregivers often build up unexpressed emotional trauma that can take months or years to heal.
The researchers stress that the clinicians need to recognize that patients and their caregivers react to cancer as a unit and, as a result, they both have legitimate needs for help from health care professionals. When caregivers’ needs are not addressed, their mental and physical health is at risk, and patients are denied the opportunity to obtain optimal care from a well-prepared family caregiver.
A case study “Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients” by Margaret F Bevans and Esther M Sternberg observed that unlike professional caregivers like doctors and nurses, informal caregivers, typically family members or friends, provide care to individuals with a variety of conditions including advanced age, dementia, and cancer. This experience is commonly perceived as a chronic stressor, and caregivers often experience negative psychological, behavioral, and physiological effects on their daily lives and health.
One wouldn’t know with certainty the internal turmoil that the person battling the disease is going through. Even though the visible signs are painful, what goes inside the mind of the person “ and the extent to which they are comfortable sharing those feelings with their loved ones “ is mired with emotional ambiguity. While the physical sufferings are the patient’s alone “ and the fact is most hurtful than any other to the caregiver “ patients also have the same fear of losing their loved ones, similar concerns and insecurities. In this sense, one could say that the caregivers of terminally ill patients experience similar kind of emotional trauma that the patient faces. People should keep these factors in mind while trying to be helpful to a family that is fighting cancer.
