How the life of a caregiver needs to be prioritised

A poignant case study

Seated beside Laxmi, who is now 87, on an equally aged wooden sofa, is Sravanthi, who reads out the headlines from an English daily. Sravanthi has been at Laxmi’s side every morning for the past 15 years at 6 am sharp, to take care of her at her suburban Mumbai flat.

While Laxmi’s advanced Parkinson’s disease has left her confined to her room, the unfailing efforts and dedication from her daily companion and friend give her a reason to fight for her health and dignity. Helping Laxmi with her routine, placing her hair in a tight plait and giving her timely medication are just a few of the many chores Sravanthi helps her with.

Every evening, she wheels her out for a stroll in the society garden after her customary ginger tea and chitchat. The sight of a flock of birds flying home is a sign for Laxmi to head back home too. Demanding careers leave both Laxmi’s son and daughter-in-law with very little time to tend to her daily needs. However, whenever they get back home, they make it a point to catch up with their ailing mother. While Sravanthi, Laxmi’s distant niece, cannot fill the void left by Laxmi’s husband’s death, she has become a good friend and a true companion to her.

With India’s senior citizen population estimated to reach 12.5 percent by 2030, it is more likely that there is a Laxmi in every home. And could suffer from more than one chronic ailment. While many elderly face neglect, and are confined to their homes with no support or care, a few like Laxmi are lucky to have someone to take care of them. Caregivers play a crucial role in the lives of the elderly, not only offering them constant care and support but also forming a special bond of affection and friendship.

A major ailment often comes as a setback for the entire family. A chronic disease or a grave accident is not only depressing for the sufferer but also causes upheaval in the lives of loved ones. A debilitating condition may leave the patient incapacitated and incapable of taking care of themselves. They may need constant care and attention for weeks, months or sometimes even years. Such dedicated service demands unconditional commitment and healthy mental and physical well-being. An isolated environment and a life constantly revolving around that of an ailing loved one can push caregivers into depression.

The constant nature of their responsibilities can sometimes lead to frustrations related to having to compromise on their social and personal lives. Therefore, it is important to understand the challenges and complexities in a caregiver’s life and offer help wherever needed.

Taking care of a bedridden adult is a Herculean task. Tasks like supporting physically, bathing, changing clothes and managing their weight while shifting them from a wheelchair to a bed or vice versa can definitely take a toll on a person’s physical capacities. While an undying sense of care and service may endow a sense of pride, it is but human to fallback sometimes. Many caregivers, especially those caring for their own loved ones without much training often complain about their own health suffering due to neglect. They may be stricken with backache, and pain in the joints and knees due to excessive weight bearing.

Most home-based caregivers have to go far beyond the usual job description or call of duty to perform many other functions as chronic conditions advance. From administering intravenous fluids, injections to precariously measuring out medications, untrained caregivers may be required to take up duties without the necessary skills. And the fear of anything going wrong can wreak havoc on their mental stability as a caregiver.

Caring for an ailing elderly is a 24x7x365 job. Especially in India, where institutionalised care is still frowned upon, family members who take up this mammoth task can expect very little. From running personal errands to socialising takes a backseat. Many a times, there is poor understanding and a lack of empathy from the wider family circle as they fail to offer a helping hand to caregivers even in times of urgent need.

Trained or institutional caregivers have their own set of challenges. While they may have received proper training, there is a general need for formalisation of this community. Insufficient training or that confined to only a few work areas may leave them facing on-the-job challenges in case of new conditions. While insufficient funding, poor infrastructure and resources are some of the weak points ailing this sector, institutional caregivers often need to work for extended hours without breaks.

This can lead to physical fatigue and high stress levels further causing them to lose focus and passion. Being constantly surrounded by ailing patients is a leading cause of depression and other mental problems in caregivers. For instance, tending to a dementia or Alzheimer’s patient can be very strenuous due to the high degree of positivity and patience it demands. It is essential that caregivers are given scheduled breaks and intermittent timeouts to recoup and refresh their minds.

When altruism slowly starts giving way to frustration, the life of a caregiver can begin to slide downhill. We need to remember that relieving stress is no longer a luxury but an essentiality for caregivers. The demand for institutional care for the elderly is still in its nascent stages in India, and much of this responsibility still lies with familial caregivers. Just as in the case of an aircraft emergency, where we are told to put on our oxygen masks first before helping others, it is essential that caregivers are trained to take care of themselves first before extending their support to an ailing aged.

(Edited by Suruchi Kapur- Gomes)

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