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Submitted by momtoditi on 5 July 2018
Jyotsna in a blue dress against a bright background of yellow, gree and red

Jyotsna Kumar talks about her caregiving roles - as a mother of daughter with Cerebral Palsy and as a daughter. With a timely reminder on the importance to look after oneself to avoid burnout and also to increase the quality of caregiving.

When I became a mother of a child with disabilities (spastic diplegia, commonly known as cerebral palsy), my life changed drastically. It was an upheaval of all kinds - emotional, physical, mental and financial. The life I knew prior to her birth suddenly ceased to exist and there I was in this new role of a caregiver not knowing what to do.

I had to find the joy, or so I thought. Over time I figured out that there were going to be moments of joy coupled with moments of sheer fatigue and helplessness.

Following my daughter’s complicated heart surgery after 3 long months in the ICU on life support, when I brought her back home, this wraith-like infant swaddled in many flannel sheets, barely 1.2 kilos, fragile and frail, I chose to be her caregiver. I chose to not keep a hired nurse or help for her. I could have but opted not to.

Days and nights of measuring urine output, food intake, medications, nebulisation, guarding against infections - each of these gave me a glimpse of what caregiving was all about.

When she didn’t achieve milestones and her therapies began, another journey of caregiving began. Daily physiotherapy sessions, carrying her through the commute with a head that flopped and bones that rattled, the care and caution while handling her was something that took me months to master.

Each day I learnt that it could either feel like a burden or it could give me joy. It was my choice!

Caregiving Burnout

By the time she was 3 years old and still undergoing daily neurodevelopmental therapy, I was a wreck and didn’t realise it. This was my first experience of burnout as a caregiver.

The initial years were about an infant with disabilities needing the earliest of interventions and I was a mother on a mission towards helping my child. I had my husband by my side pitching in whenever he could and my older daughter who made it her daily ritual to read and play fun games with her baby sister though the latter was c-arched either in bed or in a stroller propped up.

I can go on and on about caring for her through her Botox interventions, numerous therapies from occupational to speech to sensory integration, home programmes. What happened during this entire journey was that I forgot myself. I forgot to take care of myself and my needs. In simple terms I chose to not nourish myself, I didn’t pause to breathe or create a space for myself. I was also coping with my own disability of profound hearing loss that was progressing steadily.

In hindsight, it was a choice I made with little or no thought towards self care and the sense of busyness had taken over my life to the extent of being overwhelming. I had forgotten to be still and taking time off for myself.

It was only when I couldn’t take it any more and developed a lower back problem and anxiety attacks that I was forced to take stock and listen to my body.

I took time off to learn and practice yoga and pranayam at home. I learnt to ask for help when I needed it and kept extra help at home as support. My body and mind both needed the rest that would help me help my child better.

Sense of Fulfillment 

On the flip side, caregiving for my daughter and watching her grow slowly and steadily, shattering all medical prognoses and seeing her happy smile allowed me to appreciate my role in taking care of her. Caregiving can be joyous. It’s only a matter of perspective. Somewhere it allowed me to tap into my inner strength and courage. It helped me to understand myself better - where was my resentment stemming from? Was I still feeling victimised? It allowed me to understand the importance of ‘me time’ and treasuring one’s space when one had it.

My daughter turns 17 this year and is managing to work with and around her disabilities. Through this journey I’ve also been a caregiver to my aged parents, my mother through Parkinson’s and other complications and now my 90 year old ‘young at heart‘ dad who lives with me.

Important points to remember as a caregiver:

  • I chose the role of a caregiver and it was my responsibility to take care of myself too or ask for help in doing so. Trying to be a super-woman and a super-mum is self-defeating.
  • Anger and resentment can build up. One needs to watch out for that. Share it,keep a journal or seek professional help. 
  • Do little things to nourish your soul. Cook a favourite food or order in. Read a book.
  • Grab a cup of chai or coffee on your own or with a friend .
  • Walk, bike, run, draw, paint - not to achieve something, but to allow a freshness to enter your life.
  • Mindfulness or being aware as I do the things that involve care giving helps for that moment. Creating that mind space needs a small shift or a moment of reflection.
  • Join a support group if that resonates with your needs. But remember, eventually we learn to support ourselves.

What helped me?

Homeopathy and making time to go out for walks, writing a blog, learning yoga and making an effort to spend time out of home. It has taken me a lot of courage and inner work to create space and time for myself without feeling guilty.

I continue to be a caregiver even now but have chosen to not set high standards for any lapses that I may make. Both can coexist - caregiving and nourishing oneself.

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