A 47-year-old woman tells me, “We were at a workshop in office, where we did an activity which focused on understanding who we really are. During the exercise, tears welled up, and I realised that I have been a caregiver all my life. Before marriage, it was my grandparents I helped my mom with. Now it’s my husband, who is struggling with kidney complications and dialysis. I feel responsible, and, at the same time, guilty. I left the workshop early, I couldn’t control my tears. I love them all, I don’t know what fills my heart with sorrow and pain”.
Many of my clients over the years have been primary caregivers for their parents, spouse, in-laws, a child with disability. In my practice, about 60% of the clients who play the caregiving role are women. Most of them fall in the 35-70 age group. Very often, when they reach out for therapy, they feel guilty talking about their emotions and their struggles as they feel the family member they are caring for is going through worse. Only gradually do they begin to talk about how lonely and challenging the process can be.
Most caregivers in therapy discuss the wide range of feelings their role evokes: not feeling seen or understood, anger, emptiness, grief, a feeling that they have forgotten what it means to live their own lives. They also discuss how caring for a family member who dislikes them or is defiant has taken a toll on their self-esteem; they continually feel their patience is being tested.
At the heart of caregiving is the continual feeling that you need to be vigilant and present to the needs of the person you are caring for. This 24x7 presence comes with its own feelings of anxiety, hypervigilance, feeling continually wired, fatigue, and, often, a lingering low mood. All this, combined with the pressure to make decisions at every stage for the patient, can lead to decision fatigue and caregiver burnout.
If you are a caregiver with the resources to take care of your family, it’s still okay to feel overwhelmed and exhausted. It’s okay to acknowledge and allow yourself to grieve for the trips you can’t take, the impromptu plans you can’t make, even for the loss of a life you had envisioned or could have had.
As Lori Gottlieb, psychologist, and author of the book Maybe You Should Talk To Someone, says: “There’s no hierarchy of pain. Suffering shouldn’t be ranked, because pain is not a contest.”
So, learn to acknowledge your emotional distress and ambivalent emotions as a caregiver. Maintaining a routine, learning to regulate your sleep, eating schedules and exercise are self-care behaviours that can help. As a caregiver, learn to ask for and receive help, it’s okay if you can’t manage it all.
Treating caregiving as an individual problem comes with its own challenges. Global data too shows more women than men seem to be doing it full-time for their families. For such women, this can mean letting go of full-time jobs, career opportunities, sometimes even moving to flexible alternative careers. At an organisational level, the idea of psychological safety needs to include caregiving. It could be in the context of making room for caregiving leave and building emotionally safe environments where managers and leaders recognise the emotional and psychological demands that caregiving entails, combined with an empathetic attitude.
At a policy level, we need studies/research papers that document the percentage of people engaged in active caregiving so we can understand the magnitude of the concern. At a societal level, it would help to establish support groups, community resources and programmes that help individuals deal with the stress and burnout associated with caregiving.
We need to remember that in the end all of us will require caregiving—just as at some point we will also be playing the role of caregiver.
Sonali Gupta is a Mumbai-based clinical psychologist. She is the author of the book Anxiety: Overcome It And Live Without Fear and has a YouTube channel, Mental Health with Sonali.