Caregiving:  Just ask the caregiver

- Pouruchisti Wadia Associate Program Director (Romila Palliative Care Center)

It's been a while since I completed my blog series on my learnings in palliative care. I've been eager to write again, but despite my professional experiences, it's always my personal journey that truly inspires me to share my insights.

In palliative care, we support caregivers just as much as we support patients. At the very outset, I want to acknowledge Caregiver Saathi, our network partner, for their commitment to building an ecosystem that enables compassionate caregiving.

Much has been said about the importance of family caregivers prioritizing their own well-being to prevent burnout and how palliative care supports both the patient and their caregivers. However, my personal experience recently reinforced just how invaluable paid caregivers can be. Their role is often overlooked, yet they make a profound difference in a patient’s life. By being present day in and day out, they form deep bonds with patients, providing not just physical care but also emotional comfort. In many cases—especially when family members are away or living abroad—patients spend the majority of their time with paid caregivers, relying on them completely.

This realization makes me even prouder of SNEHA’s Nurse Aide Program, which trains young women to become skilled nursing assistants. Beyond technical training, we emphasize soft skills, communication, and compassionate caregiving, ensuring that they are well-equipped to support patients holistically. Importantly, our program also includes specialized training in palliative care, reinforcing the significance of both medical and emotional support in caregiving.

Our caregiver, let’s call her S, played old movie songs every day as soon as she arrived, hoping to lift my mother-in-law’s spirits. Despite my mother-in-law having lost interest in her former passions, S continued this ritual unfailingly. Meanwhile, caregiver P took a different approach—keeping her engaged through personal stories and small yet thoughtful gestures that showed just how much she cared.

Besides providing emotional support a trained caregiver can help you to confidently take decisions you otherwise couldn’t have taken. For instance, S was experienced at operating oxygen concentrators. Despite all my palliative care background I am not sure I could have convinced my husband to keep my mother in law at home had we not had her, managing the equipment so confidently. She convinced us that we could manage her breathing distress at home well. My husband who had such a negative experience of the hospital recently was more than happy to take that decision. Thanks to S, my mother-in-law was able to spend her final moments in the comfort of home, where all her loved ones could all come and meet her.    

Another decision where S influenced me was when we had to decide whether to insert a Ryle’s tube. The general practitioner attempted the procedure but felt that my mother-in-law’s body was not accepting it and advised against forcing it. Often, the decision to insert a Ryle’s tube is more about easing the caregiver’s conscience—reassuring ourselves that we did everything possible. Despite all my palliative care training, S’s emotional need swayed me. She tugged at my heartstrings, compelling me to step into the role of a "good daughter-in-law”.

Her journey would have been so different without the dedicated support of her caregivers, who put their hearts into their roles. This is not to diminish everything my husband did for her—his constant presence, willingness to meet her every need, and the way he inspired the caregivers to give their best. Caregiving is a profound teacher; it reveals parts of yourself you may not have known and, hopefully, shapes you into a better, more compassionate person in the long run.