Women are the default caregivers in a family. The role can be physically, emotionally and financially draining, but does anyone care?
Illness is a dreaded reality, yet we are brought face to face with it in myriad ways. If indeed misfortune falls on a near and dear one, we have to mobilize all our resources – financial, as well as, physical and emotional. The outcome of the illness is in the hands of the experts, and to some extent, destiny.
I say destiny because most terminal illnesses these days come as a bolt from the blue. Very rarely does it happen that symptoms remain undetected due to negligence. Whatever the premise, once the cards are dealt you have to play the game.
Rather than coming to terms with the harsh reality that a loved one is in pain, the immediate issue most families are faced with, is a shortage of caregivers. The task mostly falls to the woman/women in the household. Apart from their daily chores, the daunting task of providing all care and support to the patient also falls on them. Most households will have men going out to earn the daily bread and butter; and caring for a patient requires more time and energy than they can spare.
Things are even more complicated in today’s nuclear families, where both spouses are working and there is hardly anyone to even look after ailing children, leave aside sick parents/ in-laws. In my opinion, anyone who is directly involved in catering to the needs of the patient can be called a caregiver, as it often requires much more help than is actually available at hand.
Most elderly couples today live on their own, the children having left home for education and employment. In small towns and villages, children leave never to return, and set up their own homes in bigger cities. In such cases the onus of caregiving lies entirely on the frail parents. Since archaic rules ensured a significant age gap between husbands and wives, it is mostly the latter who become caregivers.
Add to that the culture of families with homemakers – men are majorly not equipped to do much besides bringing home an income. So if the man of the house falls ills, the entire responsibility is on the shoulders of the lady of the house – of caring for her husband, doctor’s visits, taking care of finances, not to mention the special food and other needs of the patient.
Children come when there is an emergency, but imagine months, years of terminal illness that slowly but surely brings people closer to the destined end. In cases where the lady of the house falls ill even with something minor like a cold or fever, things become even more chaotic and difficult to manage. There is a beautiful Bengali film ‘Belasheshe‘ (in the autumn of life), which essays this situation, but in a very novel and interesting manner.
The physical demands of caring for a seriously ill patient is immense. Imagine a 60-year old person having to cook for, feed, bathe, change a patient, maintain adequate hygiene, ensure medicines are given on time, take them to attend doctors’s visits or therapeutic sessions, the list is just endless and too taxing. Their own meals, sleep and rest totally take a backseat. Any pre-existing health issues that the caregiver may have due to age, like diabetes or blood pressure get relegated to the background.
Apart from the psychological burden and fear of loss that comes along with an illness, comes the financial pressure. A family may be able to live well within their means in normal circumstances, but a serious illness can wipe out years of savings in a jiffy. This is always at the back of the mind of a caregiver, and subjects them to serious stress. Not every family is equipped with proper health insurance and the thought that treatment may stop due to shortage of money wreaks havoc on already shattered minds.
Another aspect which is hardly given a thought is the patient’s irritability and behaviour towards the caregiver. It may be a fallout of the pain they are in, but sometimes patients will be unreasonable and create difficult situations at home. Sometimes caregivers are even subjected to physical and verbal abuse.
In India, we lack counselling facilities for patients as well as caregivers, and issues like these are never brought to light. But it can be demeaning and very demoralizing for the person who puts their own interests and convenience aside to care for another.
Hired nurses are always available, but it is only in dire need that families resort to them as caregivers. They do their jobs, but there is always a gap in how a patient will be able to communicate with them and someone from their own family. It is a task that demands divine amounts of patience, and not even trained caregivers are known to exhibit that at all times.
As a society, I think we need to be more aware of how difficult a task caregiving is, and show that respect or extend a helping hand when such a situation arises.
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Image Source: By Rhoda Baer (Photographer) [Public domain or Public domain], via Wikimedia Commons