Dear People Visiting the Sick, Please Be Kind to the Caregivers

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When my dad had suffered a stroke, we have seen the pillar of our lives crumble in different ways – physically, mentally, cognitively, and emotionally. It changed our lives and the way we lived completely. Doctor and physiotherapist visits, 24×7 nursing care, and dealing with the fact that the ground beneath our feet is constantly shifting. Every day I would just ask myself what could we have done differently to have avoided this misfortune. The most difficult thing to cope with has been the deep despair and heartbreak of knowing what Dad must be going through every day because of his debilitating condition.

To see our hero lying in bed being fed, dependent for his everyday needs, not being able to hear his voice has been the most difficult and traumatic time in our lives. However, as much as his relatives and friends miss him, it’s the immediate family who undoubtedly felt his absence even in his presence. Oh what wouldn’t we give to hear him call our names? What wouldn’t my mother give for his comforting presence in her bed next to her, for another argument with him, for his companionship?

But the most distressing thing has been dealing with people around us. While many were supportive and wished us well and were constantly praying for him, many close ones spoke ill behind our back, constantly judged us for the decisions we made, second guessed our intentions. This took a huge toll on my mother, who was the primary caregiver, and us, mentally and psychologically for it left us feeling less and loathed with self guilt.

To those I wish to say that may you never have to go through what we have. May you never have to see your loved one suffer and deal with someone doubting your care for them lecturing us on the diets to give, treatments, etc. It is very painful. No one takes care of the caregivers. No one takes a moment to ask them how they have been doing, have they gotten enough sleep, how are they managing the funds, their work, their health and their family.

To the people visiting the sick, I ask you to be kind to the caregivers. To trust that since they are the most affected by what happened to their loved one, they are definitely doing our best. That they have invested their time, effort and money in getting the best treatment and care and if there was more they could do then they would probably do it regardless of what anyone has to suggest or say. They know best and it’s their call to make.

Caregiving is never one-size-fits-all

Unless you have lived with them for a week, both day and night, do not speak for them or speak of them. It’s too much at times to be patient in the face of adversity so don’t add to their distress and self guilt. And if you hear someone criticizing them, judging them, shut them up and tell them, “Am sure they are doing their best”.

Who takes care of the caregivers?

Caregiver burnout or caregiver stress is a state of physical, emotional and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically or financially.

Today, I want to tell myself and so many caregivers out there who are struggling to cope, don’t get drowned in dealing with your ill ones. You don’t owe answers or explanations to your relatives or friends and if they cared that much, then they might as well take over. Don’t try to micromanage things. It’s not possible. Mistakes will happen and it’s okay.

Self-care for caregivers

You are human too. Self care is important. You may feel like giving up many times in the day but don’t. The critics will criticize. That is all they know for they haven’t lived in our shoes. They only know what they see in that moment and derive their conclusions from that.

Take time to love your loved one but also love yourself. Crack a joke or two whenever you can. Read a book, magazine or newspaper for some time every day. Go for therapy if you need or talk to a loved one. Have a hobby to distract you. Go for a walk. Or even cry if you feel like. Make yourself a priority too. And turn a deaf ear to what people say.

And remember, for everything the illness takes away from your loved one, what it can never ever take away is their love, their laughter and their memories.

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When Stuti first told me about Shreya, I knew I had to write this story!

I had to write this for my cousin who couldn’t talk for two days after delivering her first child — my former editor who still feel that she didn’t love her daughter enough when she was a toddler — for the lady who had to keep her profile anonymous while sharing her story on Quora — and for several other women who might not even know what they have gone through or are going through.

PPD or Postpartum Depression is not just a term but a very common phase through which more than 10 million women go every year. And the fact that not even 10% of them are aware of this condition is really worrisome.

Four years later, Shreya still regrets that she couldn’t preserve the memories of her son’s first year. “It was a gloomy dark phase, the phase where I fought every single day to make it through another day,” recalls the 29 YO mother who has been diagnosed with a brain haemorrhage, postpartum depression (PPD), and premenstrual dysphoric disorder (PMDD).

Life was a wonderland until her first year of marriage — she fell in love, had a beautiful wedding, the couple got settled in Jamshedpur, and soon had their first child. But what Shreya calls afterwards is nothing less than a nightmare for somebody.

“I can never forget 2016! While getting pregnant was wonderful, I lost my grandma the very next month of I found about it; and that impacted me. I felt sick. My mother got diagnosed with cancer. My son got diagnosed with clubbed feet in my anomaly. My husband got down with dengue. It was a hell of a period for me,” Shreya recalls. “While my mother flew back to me from Mumbai for my delivery, it was difficult to see her in that condition.”

Shreya gave birth to little Shaan on 01.12.2016, and five days later, got diagnosed with a brain haemorrhage. She was immediately taken to Chennai by her husband and father-in-law. Her life was at stake, and Shaan stayed back with his grandmother and aunt.

“I was saved. Yes, I fought a lot, but soon I started getting panic attacks, anxiety attacks, unexplainable postpartum rage, and I went into depression,” Shreya calls it a horrible phase, and it wasn’t easy to overcome it. The worst was not knowing what was happening to her because all the reactions were behavioural.

I became a monster! I knew I needed help, but I had no idea about what was changed. I shared my emotions on a mothers’ forum, and when I told them how I felt about hating motherhood, feeling disconnected with my child, sudden anger and crying moments, unwillingness to wake up every morning, they asked me to get screened for PPD.

And that was it — that’s how Shreya got introduced to PPD. She started taking sessions, and though the depression phase was getting fade, her anxiety persisted and was only triggered when someone in the family fell sick.

It went haywire after the 2020 pandemic and Shreya had to restart her medications. Her anxiety was hormonal and was termed as Borderline PMDD. What she thought would be PMS turned out to be PMDD. “It was hard for me to accept it. Someone like me who never had any sort of health or hormonal issue was suddenly suffering due to a hormonal imbalance. And due to my unbalanced hormones, I had thrombosis too,” Shreya further continues.

Shreya knew that she had to do something, “I realised how the guilt, and society becomes a reason for so many mothers to not talk about it. And I had to break the stigma!”

In my time, I wish someone would have mentioned about the PPD even once! It would have helped me earlier, and I wouldn’t have suffered for so long!

After her diagnosis, she posted a happy picture of her family on social media quoting, ‘postpartum depression may not appear to be like this, but it exists, and you may not see and understand, but PPD is a part of this picture.’

After this, a lot of women, including Shreya’s friends, reached out to her and shared their experiences. She soon started Raising Shaan where she mostly writes about maternal mental health. Shreya is trying to increase awareness about maternal health, normalise depression, its causes and consequences. She doesn’t believe in online research and thus reaches out to people via different mediums and try to know about their motherhood journeys. She also collaborates with brands to increase awareness about PPD and PMDD.

“Even if there is one woman I can reach out to and say that what you are feeling is normal and things would get better, you don’t need to be guilty; I think I would be able to justify my work. This is how much it matters to me,” Shreya finds it really fulfilling when other women reach out to her and find it comfortable to share their emotions with her.

Being someone who went through the same, Shreya finds it easy to connect with people. She realises how much the screening of mental health along with PPD matters in the first 45 days and how it should be a part of the regular health checkups.

“PPD took away one whole year of my life, and I don’t know who to blame, or how to get closure. I will never get the first year of my child back, and it hurts knowing that it would have been prevented or tackled in a better way if I had known about it earlier,” Shreya says.

PPD did impact not only Shreya but also her family. Her husband was clueless. “He wanted to help, but I was cutting everyone off. He didn’t know what had happened but kept saying that something about me changed after giving birth to Shaan,” for someone like Shreya who used to be a jolly and amicable started getting angry for no reasons and she felt pathetic every time she cried or felt disconnected from Shaan.

Shreya advises soon-to-be mothers to plan their nine months in a better way. She recommends future mothers to get in touch with mom support groups, educate themselves about lactation, baby blues, PPD, PMS, PMDD, etc.

“If you’re someone who’s suffering from mental illness and feels that you’ve changed after delivery, it’s not you, it’s the hormones. It might be hard to believe, but yes, it does get better over time. All you need is support and love,” Shreya concludes.

While talking to her, I could hear Shaan’s melodious voice and his constant calls to his mamma, and I wondered how hard it would be for mothers to pass this phase, and to avoid the guilt of not loving their kids enough!

Like Shreya, every woman suffering from PPD carry her own story, her own emotions and own guilt. If you know someone going through something similar, share this story with her and tell her that it’s normal and it will get better. You can connect with Shreya Mitra via Instagram or Facebook. #MyStory #InfanoWomen