Recognizing Ourselves as Caregivers

Inspired by an experience with a caregiver to a mentally ill patient

Recently I tried to interview a caregiver, who I identified from my social circle. I saw them resurfacing from the murky waters of caregiving, and they had officially transitioned to a happier period in their life. Their loved one had a clinical mental condition for which they went to an institute of rehabilitation, and it transformed who they were overnight.

Up close, when I saw the caregiver in the dark, at their most vulnerable, I saw that their chests had seized for that terrible period. Like their heart was stuck in a rotten pear, sticky and suffocating. Time rolled by, and things weren’t changing much for half a decade, then a decade, and then another. Finally, by some miracle, the caregiver fixed the approach that wasn’t working for them. The caregivers realized that they were relying on logic to communicate with the patient… But how could the patient understand and act that way? Their mental illness didn’t allow them to remain stable and rational! Their patient, in an outburst, had wished that they had a physical illness so that they would be treated with as much care as one who had… and it opened this caregiver’s eyes.

They started to remind themselves that any mental illness was no different from any “regular” condition like diabetes or hearing impairments. It’s effects just manifested in a different part of a body and the symptoms showed differently, in behaviour rather than otherwise. They learned to be patient in the worst of times, with minimal help from the people around them. Little by little, there was a shift in the rhythm of their life. The patient’s progress was expedited significantly. Fights still arose, but lesser and lesser, and long-lasting conflicts that were churned again and again in ugly altercations, withered away. The patient cooperated with the course of their medication and counselling treatment and therapy. The light in their eyes returned and so did their vibrancy. They started doing the silly dances that they used to do at home when they were young and started cooking exotic dishes again. The sombre vibe of the house was lifted. Everything finally stabilised.

However, despite the joy now, this caregiver was happy to share their journey but flat out refused to let other people know about their journey.

This was a story of bravery. This was the story of a breakthrough. Small, yes and insignificant to the rapidly moving world outside, but within those four walls, it was the sign of a dormant seed budding after years and years and years. I was moved when I sat down and shuffled through these years of memories that were handed to me, heavy but fragile, but I was only to hold them tight with me. The world out there, as much as possible, couldn’t get to know about this.

I had already figured out why the caregiver was wary of speaking about this. Because yes, though mental illness to them was identical to a physical illness. After all, the same neurotransmitters and hormones and biochemicals that circulate in the brain also circulate in the body! A rusty cog in the brain could, at some level, equal a rusty cog in the body? But, to the world outside?Especially in India?

How many people had spent years of researching mental illnesses, how to accept people with illnesses and so on? How many people had been in contact with people with chronic conditions or their caregivers? How many individuals strived to tinker with the way they approached mentally ill people, to ensure that people with that disadvantage were elevated to the same level everyone else was in society? At least,among the ones that I had come across – fairly few people.

Most people are scared of mentally ill patients and think mania. Simultaneously they think mental asylum, straight-jackets, harsh white walls, all of that. Mental illness is, more often than not, nothing like that. Caregivers understand this fact, are afraid that people around them could revert to the preconceived notions fed over centuries about psychotic individuals. This only increases the wariness about sharing anything about the patient for fear of them being misunderstood. Even the term ‘psychotic’ probably evokes a frightful image, while in reality psychosis has to do with patients losing touch with reality. A rather common symptom observed in elderly people who develop ‘milder’ mental conditions like dementia.

A rather defining characteristic of caregivers in general, though, is their tendency to not identify themselves as caregivers at all. “I’m just being a good son,” says someone who’s really struggling to divide his time between caregiving and work. “It’s my duty as his wife,” says someone else, burdened with her expectations from herself (besides others) in a conservative household. There are so many reasons that people use to justify their dismissal of the importance of caregiving.

I realized during my internship that this is the main driver behind Caregiver Saathi’s endeavour to serve as a platform and a safe space for caregivers. To help them recognise and appreciate each of the roles they play in their lives, both for themselves, and for other people. You can be an exemplary daughter or a dutiful grandson while also being aware of how you are or need to become more. On a different note, I overheard another new for me and sad comment that an attendee made in a support group session that Caregiver Saathi hosted,she said she didn’t do enough for her loved one in a situation where she wasn’t a primary caregiver.

Primary caregivers often consider it a long and lonely journey that they need to travel solo. Though there is no standard of sadness or trouble you have to peak at to realise you can reach out and take help. There is no blueprint of an ideal caregiver. The only thing that makes you a good caregiver is that you are compassionate; that you help in whichever measure you can. We house 6.9 billion people on this planet and that staggering number is only increasing. There is no shortage of personalities and opinions and uniqueness in this world, so don’t try to generalise somebody else’s situation to you. You have different calibres and thresholds, so as soon as your loved one is diagnosed with a condition and you assume a role of involvement, do your bit in whichever measure.

Seek help from others while doing so, and share your stories. Talk about that one time you wanted to eat Indian but your loved one wanted to eat Chinese and so you had to compromise and it made you upset. Talk about that time you both laughed at an ancient inside joke. Talk about the lines that create your story and all the spaces between them. People need to hear narratives of strength and also of vulnerability. They need to hear about failure and success, trauma and healing. Your joy and your grief need to be on an equal footing because that’s how you learn. An artist doesn’t paint half a picture and proclaims it a masterpiece. It’s only when you give yourself the credit you deserve for being a multi-dimensional human with different roles in different systems and are courageous enough to share how you’ve managed such a feat, that you heal. And so do others – even if it’s just one person out there, who feels a little less lonely hearing your voice.

About The Author

Angelina Robertson

Angelina Robertson is a student at Oberoi International School. She takes a keen interest in the fields of psychology and journalism, and wishes to pursue a career in said veins. She also firmly believes in dismantling prejudices people have against seeking therapy especially in the region of India, where mental wellbeing is often ignored. 

 

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