A few years ago my friend’s mother was in terminal stages of cancer. She was at home and bed ridden, sometimes my friend and his father would force her to get on a wheel chair and bring her to the balcony for a whiff of fresh air. Scores of relatives and friends dropped in and left but her constant companions were pain, 30 kg oxygen cylinder and a helper (not a qualified nurse).
She was frail and there was little muscle surrounding the bones and her skin had become tender and developed sores because she stayed in the bed all day and night. She was partially conscious, her hearing was fine but she chose to communicate through hand gestures, eye movements and occasionally used her vocal chords when the pain was unbearable.
My friend and his father were the only two male members in the family and cancer and its side effects were threateningly new to them. It was emotionally consuming to clean and dress the sores and they helplessly watch them grow bigger in size. With no counseling or education it was not a pleasant experience.
All visitors brought sympathy (no prescription needed) apart from Horlicks and oranges, and a few even offered to send cooked meals on a regular basis. Since it was a losing battle, the oncologist would show up occasionally and they only medication was pain killers. A family physician would show up every other day and give her a shot of the pain killer. But none of the doctors spent time with the care givers or the patient.
My friend’s family is just one sample in the population. There are many out there fighting such battles. This battle is not to be won, but to let the loved one pass away in peace and dignity. It is an uphill task for the care givers to go through the experience with the patient without actually playing a host to the disease. Traumas are also memories – would you dispute on that?
Another friend’s mother suffers from Alzheimer’s which is less threatening, but still the immediate family around the patient needs education and training on handling the patient, understanding and attending to her needs. Often care givers misread the effect of illness as tantrum and sometimes don’t pick the signs of other diseases and promptly display their temper and ignorance. Not everyone can be Florence Nightingale and it takes enormous patience, understanding, education, awareness, and agility to serve.
In India, after we bequeath our father and mother with "grandparent" title, we spend very little time observing them, attending to their medical needs and take them for regular health check-ups. Nobody even knows their blood group until they get admitted for some life threatening illness. We lack awareness of old age related diseases and fail to spot them early and give medical care. I had heard about old age diseases like Dementia, Alzheimer’s and Parkinsons, and fail to observe the same in my great grandmother. I realized the effects of dementia when I saw an elderly gentleman in my neighborhood hosting the disease. I know such neurological diseases are not curable, but awareness and education can definitely help the family understand and attend to the patient and community help the family.
None of these people are qualified care givers, they don’t know much about the disease and its side effects. They don’t know the subsequent stages in the disease life cycle, they are not trained to understand and attend to the needs of the patient. Often we don’t appreciate having a nurse or a qualified help and feel guilty about outsourcing responsibilities. Not everyone has all it takes to be a care giver.
In the west, awareness levels are high, support groups for patients and families share experiences and empathize, debriefing sessions are available for caregivers and hospices (literally unknown in India) are available for the last journey. We all know that death is inevitable, but when it is imminent and when the date is fixed we can make the journey less painful to the patient, care givers and the family. Even NY Times ran a story on caring for care givers - http://www.nytimes.com/2010/01/22/health/21chen.html?hpw=&pagewanted=all
Can we all do something about it?
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