Recognizing the Invisible Life of Caregivers

Recognizing the Invisible Life of Caregivers

– Ms. Ashu Issar, Gurgaon

Caregiving or “Seva” has been one of the most glorified virtues of our cultural heritage. However, there is very little awareness, let alone sensitivity towards the challenges of the caregiver – be it a family caregiver or a professional. Eulogies paid on the altar of “caregiving” take away any attention to the realities of the caregiver. Generally speaking, most people don’t understand the complete importance of caregiving or the impact that “compassion fatigue” and “Burnout” have on the caregiver.

When the caregiver reaches the saturation point and kicks the stress bucket, then instead of understanding and providing empathy, we are quick to label the caregiver as rude, insensitive et al. Self care is viewed as selfishness and at best a caregiver is advised to take care of oneself only to the extent of being able to live up to societal expectations of caring for the patient. The focus invariably remains only on the patient with no appreciation for the secondary trauma or loss of an individual need for well-being. With increasingly nuclear families coupled with increased longevity, the role of caregiving has manifested as a social challenge.

For healthcare professionals, contemporary medical education does not equip medical students with the appropriate soft skills to provide compassionate care, including for themselves. Doctors and nurses are trained to administer medicine and adhere to the treatment protocols. However, the necessary emotional support needed to “care” for the patients and their families is individual and not systemic. To be fair, our country’s current health infrastructure coupled with the ratio of doctors and support staff to patients’, is quite daunting. To expect emotional support from the current health care system, is unfortunately, an unrealistic expectation. Hence, there is a dire need for a tripartite health care system that includes caregivers and their support systems.

Who is a Caregiver? Who needs a caregiver?

Rosalyn Carter says “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” So, in one way or the other, we are all caregivers and will also need caregivers. Yet, this remains an unacknowledged role – a responsibility that is thrust upon often, unexpectedly. Caregivers of chronic or terminal patients are ‘gentle warriors’ who more often than not, are fighting a losing battle. This is often a lonely journey that corrodes the physical and emotional well-being of the caregiver.

Bhavana Issar, an HR professional, pivoted from a traditional career to found Caregiver Saathi in honour of her late father. Her father suffered from a rare and terminal disease “Shy Draggers Syndrome”, commonly known as a type of Multiple Sclerosis very little of which was known in the nineties. As a supporter of the primary caregiver (her mother) and as a caregiver herself she experienced and could appreciate the arduous and debilitating nature of the journey. Caregiver Saathi is thus an endeavour to bring the necessary focus to appreciate the journey of “caregiving” and provide the necessary empowerment and support to the “caregiver”.

Though caregiving is sustainable only if the caregiver is adequately replenished, paradoxically, neither the caregiver nor others pay attention to this important issue here. The usual platitudes span the paucity of time and other resources to the inability to contribute. We at Caregiver Saathi, are attempting to challenge the social narrative to incorporate the caregiver into the mix. It’s a significant challenge that involves unlearning established norms followed by the development of new attitudes and learning new skills. Caregiver Saathi is essentially a learning academy that aims to achieve a paradigm shift towards a healthcare system that delivers compassion, care and wellness for the patient, the family caregiver and professional healthcare providers.

Caregiver Saathi empowers Caregivers by offering

1. Focused webinars covering various stages of caregiving and providing participants with tools to prepare for the next stage
2. A platform for sharing stories to facilitate healing of caregivers and offer learning to active caregivers.
3. Coaching And Counselling support to help caregivers provide care to their loved ones and themselves
4. Emotional First Aid to provide the space and expertise to deal with the sudden emotional trauma of being a caregiver more effectively
5. Support Groups with experienced and active caregivers provide a space for the development of a community ecosystem.

Since this is a community movement, other stakeholders in the community are engaged by making them Volunteers and Ambassadors to spread awareness of this pivotal need and to extend support towards this initiative.

Through this multipronged approach, we have been able to impact the health care system to some extent in the short period of two years. What started as a one-person show has now swelled to a community of a few thousand.

As long as there is life, there will be diseases and death; and there will be caregivers who will need a Caregiver Saathi.