Who Takes Care Of The Caregiver?

The days flew by. I had to actually calculate the number of days Anil spent at the hospital, as the days went by in a blur. One day flowed into another and I lost track of time.

 

Hospital, home, hospital again, waiting for doctors, reading, chanting, cafeteria…

 

Life took on a different meaning.

 

Anil suffered a heart attack that warranted a bypass surgery.
Prior to the heart attack, he had tingling and painful sensations in his hands and feet and was losing balance. This was diagnosed later as Guillain- Barre syndrome. 

 

The combination necessitated a unique line of treatment.
Questions, meetings with doctors to figure how he would withstand the surgery, dominated my mind.

 

I felt blessed with the support of family members and friends.
My Soka Family (Buddhist chanting group) conducted relay daimoku  for several days.
Our team at SAI Connections, including students, joined in chanting for Anil too.

 

I am and will always remain in gratitude to each person who chanted and prayed wholeheartedly for Anil and my family.
These prayers came to our rescue when we needed them the most.

 

I got back to work recently, after a break of 2 weeks.
Life feels a little strange at present.
I spent many hours reflecting, waiting outside the Intensive Critical Care Unit.
What is life really? Why are we here? What is true happiness?

 

Life has a way of making us surrender. I lived for each day, not knowing what the next day had in store.

 

I needed to take care of myself and my emotions. My children needed me too.
It was a juggling job- keeping everything in balance.

 

We go through unexpected twists and turns in life. Life is uncertain. We don’t know what tomorrow will bring.

 

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These few pointers kept me sane.

 

1. Practice gratitude

 

At every step I felt protected.
The right doctors and surgeons showed up.
The treatment for GBS went well and prepared Anil for the bypass.
The surgery went well. With prayers pouring in, the recovery will also go well.

 

I was in a state of gratitude. That made everything smooth.

 

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2. Be where you are- fully

 

I had to stay focused and calm.
My entire attention was on the surgery and what I had to do each day.
I couldn’t possibly have focused on my work. That would have been disastrous. So I sent out an email, informing the families I work with about my absence. I received support from all sides.

 

We’re blessed with an efficient team at SAI Connections. I knew they would handle any situation that arose.

 

Being able to focus on just this aspect of my life, for that time period was priceless.

 

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3. Enlist the help of family and friends

 

My family and friends were a blessing.
I had to be at the hospital early in the morning as the surgeon did his rounds and checked on Anil every morning. The last visiting time in the ICU was 11 pm. I needed my afternoon nap. I guarded it zealously. Family members pitched in when ever I couldn’t be present.

 

Our immediate family members flew in to be with us.
They provided huge emotional support.

 

I didn’t hesitate to ask for any support I required. My friends and family stood like a rock and would drop in to spend time, even if it meant just sitting outside the ICU.

 

4. Get your ‘me time.’

 

At times, I would sit alone at home, staring at the sea outside.
Spending a few precious moments with Mohit and Tanya, grounded me.

 

I wouldn’t have been able to get through the day, had I not chanted or read.
When you’re grounded in self, you can be much more effective.

 

Get that oxygen mask on yourself- first.
It’s necessary.

 

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5. It’s okay to not get everything done

 

It’s natural for your friends and family to enquire about the situation.
However, it gets exhausting for the person receiving calls or messages.

 

A dear friend suggested, “answer only the calls and messages you want to answer. If you want to call somebody to speak with them, go ahead. You’re in charge of your own health. Take good care of yourself. Do what you feel like doing”

 

That was precious advice. Instead of responding individually (which I did sometimes) I would send group messages. I requested my sister to take calls from family and keep them updated as I frequently missed calls.

 

I also wasn’t able to get to my yoga/breathing classes or write for a couple of weeks.
And that’s fine. It’s okay to miss out.
Do whatever you can. Forget about the rest.

 

Fear-of-Missing-Out

 

The above pointers are applicable to anyone going through a challenging situation that requires care giving.
However, I’d like to address it specifically to parents and caregivers of special needs children.
I find special needs parents to be hugely resilient. After all, we’ve spent many years battling several issues. It hasn’t been an easy life.

 

The below paragraph from an interesting article quotes a special needs mom and elucidates this fact.

 

Marilyn Cox, a veteran parent, has encountered many challenges, from problems with schools when her son was young, to problems with services and group homes in adulthood. Her son, 47, was born when autism was poorly understood and U.S. federal law did not yet require schools to educate students with disabilities. Her advice to young parents? Keep a sense of humor – and have hope. “I’ve learned to laugh a lot, even when the situation is not too funny,” she said. “There’s usually something that comes along that makes it better and more worthwhile.” In other words, she’s been practicing optimism for four decades.

 

I’ll take this one step ahead. Not just with situations related to your child, but have hope and a strong spirit in every situation that you’re going through.
Life has touched us differently. There’s plenty that we’ve learned from our children. Keep going. Take good care of yourself. Only you can do it.

 

“Your life’s worth is not decided by others. You decide your own worth. It’s pointless to compare yourself to others and allow yourself to be swayed by relative or temporary assessments, or to be overly concerned with other people’s opinions and the latest trends. That is because, in the end, such things are as fleeting and insubstantial as foam on the waves.” 

– Dr Daisaku Ikeda

 

Kamini Lakhani

Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 20 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.

11 COMMENTS

  • Dr. Renuka Nambiar says:

    All is well that ends well! Glad things have fallen into place. Good health, cheers, love, peace of mind and hugs to you and your loved ones.

  • b sriram says:

    an eye opener and eventuality which might take place for any family in the city. Facing the situation philosophically helps the mind to ease from the rigors of everyday life.instead of considering hospitalization of a dear person in the family as an additional load, face life as it comes and leave things to the right hands is well taken by parents with children and young adults with ASD. The extended family support is of great significance we noted.In other words de-centralization of running the family in times of sickness of a family member goes a long way to help overcome a crisis ,temporary in nature as it would prove to be. Upbringing of children with special needs gives us grit and determination.

  • Chitra Paul says:

    Kamini Mam, glad that everything has turned out fine.
    On reading your post realised that I myself had been following these points without realising during the recent tough phase my family and me had to go through. Yes gratitude changes everything. It makes situations easier to go through. When you count your blessings …and I am sure even in oir worst times we wouldnt have difficulty in finding blessings to count, things to be grateful for..you realise just how lucky you are inspite of all that may be going on.
    Thank you sharing. And take care.

  • Chitra Paul says:

    Kamini Mam, glad that everything has turned out fine.
    On reading your post realised that I myself had been following these points without realising during the recent tough phase my family and me had to go through. Yes gratitude changes everything. It makes situations easier to go through. When you count your blessings …and I am sure even in oir worst times we wouldnt have difficulty in finding blessings to count, things to be grateful for..you realise just how lucky you are inspite of all that may be going on.
    Thank you for sharing. And take care.

  • Arasi says:

    A lovely post.. hugs to you dear kaminini mam..my prayers to your family members..

  • Dhananjay Dashaputra says:

    Kamini Mam,very nice article and also glad that everything is fine. It happens just due to blessing of all and your sincere efforts for helping and guiding the families of child’s with special need. Thank you for sharing. Take care

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