About the Author: Ms. Lakshmi Shivaram is a volunteer (Golden Wing) with the Golden Butterflies Children’s Palliative Care Foundation, Chennai.
The process of keeping these patients and their families happy whilst taking them through palliative care does require a lot of effort. The success of palliative care, according to me, lies in putting a smile on the faces of these patients and their families and ensuring that their smile stays. I would like to narrate one such experience below.
During one of my recent visits to one of the day care centres in Chennai, we involved the children and their caregivers in two different and separate activities. The children were provided with a pen stand that they were asked to paint and decorate using the materials we provided them with. Post this short briefing, the children were given an hour to bring out the best of their creative abilities. It was heartwarming to see that the children were so involved within their groups, with a friendly and an informal buzz going around where each of them was trying to outdo the other.
During this activity, we noticed that one child kept persistently asking for a pencil, and we were wondering as to why. By the end of the activity, we were pleasantly surprised to see that this child had drawn and painted a beautiful scenery. This level of creativity and visualization of the child left our entire team impressed. This reiterated to us that engaging a child in different forms of simple art and craft activities enhances a child’s confidence by improving the child’s belief in themselves and of their capabilities, all of which creates a platform for further positive thinking.
At the end of the activity, the glee on each child’s face was a reflection of how happy they were from within as a result of participating in such fun activities. For us, it was very satisfying to have put a smile on the faces of the little ones who go through so much pain day in and out.
The Care givers were involved in an activity which is a daily requirement these days – mask making. They were provided fabric and taught how to make a non-sew face mask. We could see each of them giving more than their 100% to make the best. At the end of the activity, we received feedback that this activity was an absolute relaxation from their otherwise stressful routines. Some of them were seen asking as to how often would such activities be conducted.
Palliative care is unfortunately, most oftenly considered as end-of-life care. This certainly is not the case! Palliative care also includes taking care of patients and their families through their rehabilitation process. It includes creating a few hours of diversion from their routine, designing distractions for them with moments which they don’t experience regularly, provide them with a space and chance to share their thoughts, creativity and likes, all of which will definitely give them moments of happiness which could be their guiding star to hope and life.
Losing a loved one is never easy. However, helping them depart in peace and with dignity will definitely bring solace to the family / caregivers. For me, as a caregiver, it gives me immense pleasure to be associated with these children and their families / caregivers, as I have the oppurtunity to try and keep them away from such thoughts, even if it is for a few moments. My experience has thought me that deviating their thoughts and motivating them towards constructive activities, always lightens their mood and brings them happiness.
We work with a motto to put a smile on everyone’s face and improve their quality of life, for we know that this world will never be rid of disease. But we can learn to effectively cope with the disease and make a difference in their lives, as a caregiver.