About the Healing Circle
Healing Circle at Love Heals Cancer and ZenOnco.io is a sacred platform, where we express and listening to each other’s’ different healing journeys. We give every cancer warriors, survivors, caregivers, and other individuals involved in the healing journey, a closed space to share their learnings and experiences with one another. We listen to each other’s unique journey with compassion. Our Healing Circle Talks platform is chiefly designed to help cancer warriors feel that they are not alone. This circle is for every individual who has had an overwhelming journey with cancer, and choose to heal by sharing their stories. It is for those individuals who have become martyrs, and are still battling against cancer. We don’t advise or fix or try to save each other, but believe that we have a guiding light within us for those who need it.
About the Speaker
Bhavana Issar is the Founder and CEO of Caregiver Saathi, which is a caregiver support group for cancer and other terminally ill patients. She tells about the dynamics of help for caregivers of cancer patients and other such ebbing diseases. Through her work, she creates an ecosystem for the caregivers, who require equal support emotionally and psychologically to win over cancer.
How Caregiver Saathi Started
Ms. Bhavana begins,
“When my father was terminally ill with a neurological condition, I was in my B-school. My response was very different because our father-daughter relationship was unique and precious. My response toward his recovery was my will to become the support system for my family. So, my mother was the primary caregiver, and I, as the caregiver to the caregiver, could see her journey through a special lens. My response was to support her to the best of my capacity, but at the same time, I took a position to answer how I should become a help for caregivers from a distance.
“Losing my dad at that age was something that significantly impacted the whole family. We were all those kind of people who had the idea of what strong meant. We decided to stand by one another in such dire times. Also I thought that if I displayed weakness, how would that help my mother, who was the main caregiver? I also had my paternal grandmother, who outlived my dad for 17 years eventually. Our response was that how could we stay strong and be there for each other.
“Many years down the line, I needed to find something that gives me a purpose in my life; something that I felt was closely linked to my life’s experience. I was also very influenced by Randy Pausch (the author of The Last Lecture). Randy was a professor of computer science, and at the age of 42 years, he contracted pancreatic cancer. That college had a tradition where a professor gave something called ‘the last lecture’. In Randy’s case, it was true, and he knew that this would indeed be his last lecture. His lecture is very significant and prominent, which included communication with children. However, it’s a lesson for adults alike, which teaches the way of life.
“Randy’s book influenced me a lot, and I decided to make a list of my childhood dreams and all the things that I aspired to accomplish before I die. From that point on, I decided to bring a shift in my career. I began to wonder what all things I could include that made me happy. That led to starters like my inclination for motorbike riding. I wanted to do something for the society, and wished to steer my career beyond typical. It gave me the opportunity to explore my life’s experience first-hand – what are my capabilities, what the world needed, how I can contribute, and what would make me believe that I have lived a purposeful life.
“I am also a fellow of a Sumedhas, where I have gone through personal development training called The Learning Theatre. My mentor, Raghu, would often ask me if I was leading a dharmic (spiritual) life. The motivation to lead a spiritual life was,
‘Can you take your personal sufferings beyond your own experience?’
This question bothered me, and I needed to figure out what big I could create from my personal suffering. Could I possibly take it to a level that would make a difference to other people, as much as give me an opportunity to heal? I find many points at the cross-junction of my life’s journey. It’s been important for me to find revenue and to heal myself.
“Setting up Caregiver Saathi for me was a purpose to provide help for caregivers of cancer patients, as well as to heal myself. Originally, I had begun by observing patients and families of the disease that my father had, and still I take particular interest in neurological conditions. However, as per my research across medical conditions, my finding was that the family and the caregiver is actually the common denominator, irrespective of any medical condition. When it comes to patients with terminally-ill or chronic diseases, then the caregiver’s burden is universal.
“Many things are common; of course, there are challenges and uniqueness. Help for caregivers of cancer patients is certainly different from other diseases, and there is nothing to take that away. Therefore, we throw shining light on cancer patient caregiver stress and not just the patient, so that both the caregiver patient can actually lead a full life.”
Ms. Dimple’s Journey as a Cancer Caregiver
“I have provided help for caregivers of cancer patients to the likes of Ms. Dimple Parmar. The journey always starts with all the hardships that we have undergone. There comes a phase in all our lives, where we feel that ‘Now is what really matters’.”
Dimple says, “For me, when I had this phase of life, I was utterly in a different world. I completed my MBA and was working with the Bank of New York, and planning for my future. Life was going on, but then the situation arrived where Nitesh was diagnosed with cancer.
“At that time, I didn’t know cancer could be so critical if you don’t do the right things at the right moment. One year passed with the treatment, and we felt that okay, everything is finally alright. I was caregiving for him in parallel. At that time, even I could not believe that I had a potential caregiver in me. However, life has taught me many new things.
“I was always into sports and academics; always doing multiple things at one time, but never had I taken care of a patient before. My biggest regret is not taking care of my grandmother, when she needed it the most. I was in the 10th standard at that time. Maybe I was immature at that time.
“One night at 2 o’clock, she fell from her bed, and I was preparing for my 10th board examination at that time. Maybe I didn’t hear her shriek; I’m no exactly sure what happened at that time. So, when in the morning everyone woke up, we discovered that she had fallen from her bed, and got a back-fracture.
“Since then she was in bed rest until her last breath. At that time, I had so much pressure of my exams that I was not able to dedicate my time to her. She had always wanted that we kids should spend more time with her. Till one and half years of her passing away, I carried a heavy regret in my heart.
“Since then, I realized that health comes first. Remaining everything can be managed. So, when the time arrived when Nitesh needed my care the most, I promised to myself that I would be his constant. I became his cancer caregiver. Simultaneously, there were many things to do in college. So, academics, hospital, caregiving, and Nitesh’s other treatment phases all happened together.
“One year had passed with his cancer treatment, and we thought that everything was alright. But when it’s cancer, you never know what will happen next. Within a few days, Nitesh was diagnosed with stage 4 cancer.
“That was the last stage. We had got to know that cancer could be dangerous if you don’t take proper care. Later, we met another stage in which the doctors informed us straightforward that only six months are left with him.
“This was my second phase of caregiving. We went to USA, and there we received a lot of love, warmth and support from people. There were 50-60 such people, who were always ready to extend help. We even practiced spirituality together.
At that time, I realized that I was lucky to get help for caregivers of cancer patients, but what about those who weren’t that fortunate? Eventually, I had taken a sabbatical from my work because it was becoming difficult for me to continue as a cancer caregiver while managing the job.
“After Nitesh passed away, I realized the impact a cancer caregiver creates for the patient. Unfortunately, these cancer caregivers are the most neglected entities in the entire healing journey. Cancer patient caregiver stress is acute.
“That’s how I came through my journey as a cancer caregiver; my perception and way of looking at life has changed completely. Yes, it is essential to provide help for caregivers of cancer patients. They are the ones who take care of cancer warriors; if something happens to their health, how would they be able to impart care? It is surprising how every feeling of cancer caregivers directly affects the patients.”
Letter from Caregiver to the Cancer Patient
Our life has changed seemingly from one moment to the next, and it feels as if we both are grappling with how to deal with a cancer diagnosis, and how to relate to each other. All of a sudden, I have become your caregiver, and I want to do whatever it takes to protect you; to comfort and reassure you, and to make your life as healing and as stress-free as possible.
This is a new journey, upon which we both have embarked. I want to surround you with love, listen to you, to laugh and cry with you throughout our journey. I consider my caregiver’s life as an amazing opportunity to show how much I love you.
I am grateful for the gift of being able to care for you physically and emotionally. There are many practical ways in which I can provide support – I can help to prepare medical appointments, go with you and take notes, talk to the doctors, organize your medicines, maintain a calendar for all the appointments, provide or arrange transportation, do household chores, update your family and friends on your health, assist with paperwork or financial support, research on cancer, or find cancer related books for you.
We can even meditate and exercise together. I can cook healthy and tasty meals for you, and we can plan some outings that can give both of us a break. To be a good cancer caregiver, however, I do need your help as well. To begin with, I would like you to figure out who can be part of your support team.
Although I would like to do everything for you, I know it would do injustice to my health, which can turn me into an ineffective caregiver. There are many people who love and care for you, who have been impacted by your diagnosis.
Let’s find ways for them to support us both; it will make them feel better to know that they are doing something useful for you and at the same time, reducing cancer patient caregiver stress. For a support team to function well, we need to identify the type of things that need to be done.
If you really don’t help me, how can I support you, or do things that can help you? then just please tell me, it gives us a place to start, we can figure it out together as partners. If you hesitate to ask anything because you don’t want to burden me or make my life more difficult, please understand that the lack of information is much more stressful and can be overwhelming.
It would mean that I would have to take a second guess at how you are feeling or anticipate what you need. As a cancer caregiver, I also need some feedback about what kinds of things are working for us or not working. Your needs will change over time and it’s important to let me know when they do.
Finally, beloved, we are on separate journeys and since I cannot completely understand yours, there will be times when I will get exhausted, confused, angry, upset and frightened because you are not behaving in the way you used to, or your body is not responding the way we want it to be. Do not forget that those are the moments that speaks the depth of my love and care for you.
How Can Caregivers Take Care Of Yourself
Ms. Bhavana shares a story:-
There was a very legendary anthropologist and she was in her 20’s or 30’s. She did a lot of studies across civilization, culture and such other disciplines. At a conference, someone asked her, “Doctor, what according to you is a first sign of civilization?”
She answered that the first sign of civilization to me is a healed femur bone. The femur bone is the thigh bone and in animal kingdom if an animal were to break their femur bone then that is there sure death, so if there is a sign of a healed femur bone for a human being then that means somebody else bothered to care for this person, so much so that that person was able to heal and recover. This is the first sign of civilization. So the expression of care to heal another person is actually the sign of humanity and civilization.
Caregivers should not be superheroes. We need support just like it takes for a village to raise a child. So, I recommend all caregivers to reach out and take support. Caregivers should be clear about their needs, and what they are asking for.
Simultaneously, the extended family and friends can think of specific tasks. It is important for both caregivers and well wishers to be specific. Even the children can help; they can be a delight, they can change the mood of environment and engaging children rather than keeping them away is absolutely essential.
It is important to recognize that if you are a long distance caregiver, what all you can do. In such cases, they can be in touch, and listen generously. A well-wisher of a caregiver has a superpower to create predictability and trust by calling up regularly.
Unfortunately, we have a pressure in our society that caregivers should sacrifice themselves for the cancer patient. Cancer patient caregiver stress is hardly recognized. Usually, caregivers are women. So, stereotypes for women get automatically applied here that they should put their family first, and be self-sacrificing.
However, the community should understand that caregiving can be successfully done only when self-health is not at stake. There has to be a balance, and a sense of well-being during the journey.
Ms. Bhavana speaks on Grief
I believe that feeling sad, being vulnerable or being able to express your emotions is okay. It is not important to be strong and to be all collected at all times. Maybe, you don’t need to express it with everybody, but one can share one’s emotions at least with some people and express them.
It’s okay to feel sad, because it’s the grief talking. In the case of long care and illness, grief is complicated because you know that there is an intended death. You know that it is going to happen; you want to do the best that you can offer.
There is anticipatory grief that caregivers go through. There is complicated grief because you can’t express; you have to be hopeful, you want to stay committed, want to cure or heal but at the same time, you feel low. So, your grief becomes complicated. We are in a world where now expressing grief has become very difficult. If anyone talks about it they ask how she is doing. So, the reply is that she is doing very well, calm, composed and collected, didn’t expressed or cried much, she is good.
But this is wrong. Our rituals or expressions of grief are important, because you release through it, you get the ability to go to from one stage to another. If you hold on and don’t express, then you won’t be able to move on.
So, recognizing grief during the caregiving journey and expressing it especially after the caregiving journey is critical and it’s not easy. Well-wishers, family members, and even long distance caregivers can play a very big role in simply appreciating the complicated nature of grief that caregiver go through.
Art is a very beautiful way to express grief. For example, my mother was always fond of poetry and painting but it gets stop when you look after someone but after my dad encouraged her, she responded and expressed herself through poetry and painting and now she has a big collection of poems.
I think caregivers should find a creative expression. It is not necessary that it should be just art, but even cooking and looking after your house is an expression of your unique creativity. One of the ways of healing is to be in touch with our creative expressions.
Patient Experiences with Caregivers
Rohit – My parents were the primary caregivers. They used to do dressing for my catheter tube, which they learned from the nurses. I had never thought that they had the potential to do it. I think that caregiver definition goes beyond that also. For example, when I met one of the strangers, he helped us with accommodation.
Daily, he used to bring soup and homemade food for me as early as 6:00 am. He gave us utensils, and also used to bring homemade food for my parents. If I would have been at his place, then maybe I would have helped till searching for the accommodation, but he went beyond that. So, that is something I learned from him.
When I was in the 1st year of my MBA, I was Delhi, and due to weather changes I developed tonsillitis and fever. My room was on the third floor; I had planned to shift to the ground floor, as it was too difficult for me to climb the stairs. But unfortunately, I caught up with fever and tonsillitis. All the people there were unknown to me. However, they did something that was very extraordinary. Two of them stayed awake the entire night. They sat right next to me, and gave me care.
Atul Ji – I am very grateful to God for giving me perfect caregivers in my life, such as my wife, my children, my friends, and my family. They have all helped me in my journey and they have been amazing support systems.
I would say that when your friends come in and ask for help, then you should suggest them to do one thing at a time. Otherwise, at a single time you may get multiple responsibilities and at other times you will have nothing. The caregivers must seek advice from their friends about whatever they need to do, so that everything runs systematically. A well-organized caregiver will not have all the responsibilities on their shoulders; they will be able to balance them well.
When I was in the hospital, my wife used to come home for doing other household chores, because at the time of my operation, my daughter and my parents were in India. But then, my friends came and relieved her from the duty. They became direct caregivers to me.
I am so grateful to all of them, especially to my wife. She has helped me not only through this journey, but she has also been proactive in identifying innovative ways of improving my healing journey. She discovered new practices, new activities, and the best nutrition for me; all these have helped me tremendously.
Caregivers are strong enough to act as superheroes, but they are also vulnerable from within. They must share their vulnerability to their friends, or with whoever they feel comfortable, so that they don’t break.
Dimple – I am very grateful to the people I found in USA and Karia family. Everyone had helped me in my healing journey.
We thank Ms. Bhavana Issar for investing her time with us. We agree with her mission to provide help for caregivers of cancer patients. And yes, we as a community should try to reduce cancer patient caregiver stress as much as possible.