Nupur’s Story
Nupur, 44, is the primary caregiver for her ageing mother-in-law. Shortly after she got married, her mother-in-law moved in with them because of the sudden demise of her father-in-law. Due to complications in uncontrolled diabetes, her mother-in-law had to have one leg amputated. This resulted in Nupur giving up her job and delaying starting a family, to help her mother-in-law. Now at 44, she struggles between managing her mother-in-law’s needs and an energetic toddler. While Nupur empathises with all the life changing experiences her mother-in-law has had to overcome, she is regularly overwhelmed by depression and a sense of hopelessness about her situation.
Nupur is not alone. Despite modernisation, Indian society is still steeped in tradition. In India, most families support and take care of their elderly parents and consider it their duty to do so. Due to the ever-increasing trend of nuclear families, elder care management is getting more difficult. This is especially true for working adult children who find themselves responsible for their parents’ well-being.
Sabira’s Story
Sabira, 24, is a nursing aide and works with a reputed agency that provides home health care for seniors. She has been assigned as a caregiver to an 88-year-old bedridden elder and has been with her for the past 5 years. The adult children availed the services of the agency to ensure the well-being of their mother as they were based abroad and unable to move back home.
“It is a very challenging job as seniors have a difficult time facing the loss of independence and other changes in their lives. As a result, most of them are angry and depressed. Since we are the only ones around, they usually vent on us. All you can do is be patient and hear them out, as there is not much else, that can be done to make them feel better.”
The other challenge as a caregiver Sabira felt was the isolation. Isolation plagues both seniors as well as their caregivers. “Its easier looking after a small dependent baby or child because they are light and can be easily put in a stroller and taken out to sit in the fresh air. Change of scene is a lot easier with children, but with an elderly patient moving them is not as easy. Managing alone, I also constantly worry I may drop her.”
To cope with the lack of social stimuli, Sabira takes a few days off every month. Fortunately the agency understands these challenges. They ensure that their aides get regular time off so that they can unwind and recharge.
Unfortunately, a family caregiver doesnt have this luxury. But even for an agency, managing home care for the elderly is a massive challenge. Multiple service providers – nursing agencies, physiotherapists and medical suppliers – are small, unorganized players who extend sub-optimal care. In India, health insurance coverage is essentially limited to hospitalization. The expense of hiring eldercare makes it is difficult for families to get access for even temporary relief.
Malini’s Story
Malini, 50, looks after her parents. Her father is paralysed and her mother suffers from Parkinson’s.
According to Malini, “Caregiving for an aging parent is a much more significant life passage than we give it credit for being. When you are caring for a child, it doesn’t threaten your identity. Because that’s what parents do. You always turn to your parents for refuge. But when they seek refuge from you it shakes your identity”
She tried to get some support through a home health care agency but her parents were wary of a stranger living with them. They felt it invaded their privacy. “When it comes to child care, kids are at school most of the day and there are various day care options that keep them occupied. In the case of eldercare, even if you can afford it doesn’t mean your parents want it.”
Eldercare requires a high amount of emotional engagement that only a family member can provide. The concept of senior care has remained a neglected area of medicine in our country. Despite an aging population, elder care is relatively new in many developing countries like India with many practicing physicians having little knowledge of the clinical and functional implications of ageing.
As per the 52nd round of National Sample Survey Organization, nearly half of the elderly in India are fully dependent on others, while another 20 percent are partially dependent for their economic needs. About 85% of the aged had to depend on others for their day to day maintenance. Furthermore, the elderly often don’t have financial protection such as sufficient pension and other form of social security in India.
A number of Indian caregivers expressed the need for government as well as corporate assistance to help ease the financial burden of families looking after elders. They also thought better knowledge and sensitising the community could also help in better access to respite care for caregivers.
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