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Who Cares For The Caregiver?

Posted: November 22, 2012

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Caregiving is traditionally considered as one of the suitable jobs for Indian women. But where do caregivers go when they need some support?

By Supriya Khandekar

This article was originally published at The Alternative – an online publication on social change and sustainable living.

Radhakka takes care of her dementia patient like a mother would do a child. She feeds him, cleans him up, takes him to the hospital, reads out stories and often times, just sits and chats with him. “I like my work”, she says. “It is frustrating, but in the end, if you see the patient happy, it is more than enough.”

38-year old Radhakka is one of the many institutional care-givers who leave aside everything to be at their employer’s side – an employer who needs their full attention 24 hours a day. Having relocated from Coorg to Bangalore to be a nurse at the St. John’s Hospital, she has been living with this family as a care-giver for over a year now.

Back in Coorg, her family – a school going child, husband and mother-in-law, misses her. She says, “Earlier I used to go every weekend to see them; visits are rare now. My husband is planning to look for a job in Bangalore. That way, I can meet them atleast once a week.”

The flip-side of care-giving

While income is a definite attraction with care-giving, adjusting to a new family and the tough life of care-giving is the flip side. Financial reasons are one of the major reasons apart from personal interest and unemployment that drive nurses and others towards care-giving.

Anantha P, husband of a nurse working in Bangalore finds it difficult to manage with his wife visiting only once a month. “My parents are also old and they too need to be taken care of. But I do not earn enough as a driver here in Kottayam. Salaries are higher in Bangalore. I do scold and shout at my wife sometimes in frustration”, he rues.

Institutional care-giving is growing in popularity in India, especially in cities. For family, spending time with the elderly, especially those with an illness, is tough. The high cost of city living pushes everyone to work if they can do so. Institutional care-givers then become a convenient necessity.

Care-giving: More than a job for many Indian women

Dr Radha Murthy, a founder at Nightingles Medical Trust says that all her staff is trained for care-giving, a difficult process as some don’t come from a nursing background. It is taken for granted that the care-giver is trained to take care of every kind of illness, but this is not the case. In fact, care-givers face major challenges if they have to deal with something they are not trained in.

Murthy explains that the life of an institutional care-giver is more difficult than a family member’s. It needs a lot of effort to understand the patient, his needs and emotional frame, while living in as an outsider. She talks of cases where care-givers complained about not being allowed in the dining area, food being different and so on. They are rarely allowed to be in the living room when the family watches TV. Sometimes they are subjected to verbal abuse and made to help in other household work as well. She affirms that care-givers also require counselling.

Institutional care-givers are selfless people. It is easy to take care of your own blood but think about giving all your time to take care of someone else…

Institutional care-givers are the only family for some”, says Porkudi, Assistant Director of the Community Mental Health Programme, The Banyan, Chennai. The Banyan is an organization which identifies and provides shelter, care, psychiatric and medical services to mentally ill women. For destitutes, care-givers are the only family. “We collect pension, celebrate their birthdays and take care of them. We are by law like their family,” she explains.

Institutional care-givers are selfless people. It is easy to take care of your own blood but think about giving all your time to take care of someone else,” she adds.

Doctors feel there is a huge gap between nurses required and those available. Dr. Vijay Singh from Narayana Hrudayalaya explains that nursing students have to go through a specialized academic course to take up care-giving, after which they train for geriatric care, mental illness, antenatal care and so on.

Only a fraction of nursing students take up care-giving. Most institutions that provide the course hire people with a science background, drop-outs from colleges and so on”, says Singh.

Caring for kith and kin

Even as the demand for institutional care-givers rises, family care still remains the primary choice. “Family care-givers know the patient, are connected emotionally, and have shared memories which make it easier for them to understand what the patient may say or want,” says Swapna Kishore, a care-giver for her mother, a dementia patient. As diagnosis is often delayed, families end up caring for a patient well before they know about a possible medical problem.

Blood relations can however be a disadvantage if the family member is not trained in understanding the condition or how to cope with it. Kishore feels that family caregivers are more likely to get hurt, disheartened or depressed by the patient’s behaviour because they have known the patient only as a spouse/ sibling/ parent, and not as one with a disease.

Family care-givers also hesitate to talk to patients in simple sentences (it may seem condescending) or use tools like fiblets (because they cannot lie to their parents), and get emotionally upset when the patient gets agitated or accusatory, or fails to recognize them.

…family caregivers are more likely to get hurt, disheartened or depressed by the patient’s behaviour because they have known the patient only as a spouse/ sibling/ parent, and not as one with a disease.

If suitably trained, family care-givers can overcome these disadvantages. I have seen overwhelmed family care-givers achieve a turn-around in their care-giving abilities after they attended a few support group meetings/ training sessions,” adds Kishore.

Raman Rajagopaul, a care-giver to his wife (who had multiple cerebral and cardiac infarcts) and his 91-year-old father says, “I personally would not have liked to expose my wife or my father to any institutional facility. Others do, and I do not think that it is bad, just that their compulsions may be different. I am blessed that my problems started when I could afford to retire and provide care. I was also physically and mentally capable. Not everyone is as fortunate. In India, elders living with family is the rule rather than the exception”.

Kishore says: “Essentially, care-giving works better wherever the care-givers are tuned to care for the patient – that is, they have an environment suitable for the patient; they have the time, energy and skills to understand and look after the patient. That could be at home, or in an institution. Institutions differ in their ability to handle patients, but a good institution could be an excellent alternative.”

*Photo credit: (Used under the Creative Commons Attribution License.)

About The Author: Supriya Khandekar is a self-motivated passionate journalist. She writes on education, health, gender, children, environment, policy and other issues. She is a recipient of the Young Journalist of the Year 2009 at the Developing Asia Journalism Awards. She enjoys investigating for her stories and meeting people. When not writing, she loves reading, cooking and painting.

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