What being a ‘caregiver’ taught me: A Doctor’s Perspective

What being a ‘caregiver’ taught me: A Doctor’s Perspective

– Dr Parul Raina, Bengaluru

Being a doctor and caring for patients is one side of the story. But what if you find yourself on the other side? When a ‘Doctor’ Becomes a ‘Caregiver’!!

When your loved one is in a critical condition and you are the only doctor in the family, every decision comes to you. Many doctors know this situation all too well.

Well, I have been practising medicine for the past 10 years and became a caregiver on two separate events in the family; Once in 2019, when my father had a massive stroke, and later again in 2022, when my mother went into severe septic shock due to a huge liver abscess. Though these were sudden, transient events, they taught me what medical education could not; the pivotal role of a caregiver and the importance of their wellbeing when their loved one is going through illness. Each of these events taught me important lessons about who we should be—and who we shouldn’t be—as doctors.

Reflecting on what these experiences have taught me, and perhaps for many of us:

1. It is not only the patient’s but also the dignity of a caregiver that matters
   
   I knew that as a doctor, one needed to be empathetic while engaging with caregivers. I truly understood the meaning and importance of this when my father was hospitalized due to a massive stroke, at a leading hospital in Delhi. Since the day we met the treating Neurologist, he cared not only for my father, but always took the time out of his busy schedule to spend some time with me, to ask me about my work and to check-in on me. I remember that a simple “How are you?” brought me the much-needed comfort during those testing times. This one act, taught me that it’s not always the big gestures, but that even a seemingly simple gesture of acknowledging a caregiver’s emotions would have such a positive and huge impact on the caregiver. When my father recovered, the doctor credited me for taking care of my father so well. You see, he did need not have to say that to me at all. In fact, it was he who took great care of my father. Yet, his words have stayed with me till date and has also helped me heal from that difficult phase in my life.
    
2. Always ensure the caregiver feels informed and included
   
   We as doctors often assume that if a caregiver is a clinician, then they must know it all and that it is unnecessary to explain everything to them and bother them further. Well, let me tell you that when the patient is your loved one, you will not be able to wear the hat of a doctor. I realized this when my mother was suddenly sick and we went to a Hospital. Once the treating team learnt that I was a doctor, they began treating her under the assumption that I understood what they were doing. Did I know what was happening? YES! Had I wished that someone had taken the time to sit with me and explain what was going on? Definitely YES!! So, remember to take time to sit with a caregiver (even if they are a clinician) and to communicate with them openly to ask them about what they have understood and what they have not, and then offer the appropriate support. DO NOT assume a caregiver’s perceived level of understanding of the situation. Most importantly, never make them feel alone.
    
3. Supporting the caregiver can greatly impact the patient’s well-being too
   
   During both of my caregiver experiences, I realised that despite my parents being hospitalised, they were still concerned about my well-being, as I was trying to manage taking care of them and my other professional and personal commitments. It was only because of the support I received from the medical team, my family, and my friends, was I able to catch moments of rest while continuing to take care of my parents. This support from my network was invaluable and I honestly don’t know how I could have navigated that challenging time otherwise. Knowing that I had ‘someone’ to take care of me or knowing that I was also being supported brought immense relief to my parents who were going through something themselves. Seeing the relief in their eyes helped me understand that supporting the caregiver had a positive and direct impact on the wellbeing of the patient as well.
    
4. Being a caregiver is not easy at all
   
   Being a doctor, we are ‘expected’ to not get emotional or ‘know how to control’ our emotions regarding patient cases. During the course of my parents’ treatment, I went through an emotional roller coaster pretty much on a daily basis whether it was trying to hold it all together, or to protect my family from making difficult decisions regarding treatment choices. Despite having fantastic support from friends and family, there were several instances when I felt isolated mostly because I had to make all the decisions regarding my parents’ care, and at the same time had to put on a façade that everything was ok and that it was under control. During these times, I was unable to express my own emotions due to the fear of affecting my family negatively. Over time, I realised that withholding my emotions or always trying to be in charge negatively impacted my mental health despite having the support of loved ones around me. We clinicians, must be aware of the turmoil that caregivers might be going through and remember to be sensitive to their emotions, even if we feel that we have provided the best care to them.

Both of my experiences have taught me that the role of a caregiver when one is a clinician is blurred and that one constantly oscillates between being a clinician and a caregiver when there is a health crisis within the family. These experiences have taught me that it is important for caregivers to not be too harsh on one’s self and that it is ok to ask for or receive help when offered. Clinicians need to mindful that caregivers are most often in the midst of complex situations each of which is unique to them. It is therefore pivotal for healthcare providers to be mindful that caregivers need care too!