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Healing Circle Talks with Bhavana Issar: Care for CareGivers

Healing Circle Talks with Bhavana Issar: Care for CareGivers

About the Healing Circle

Healing Circle at Love Heals Cancer and ZenOnco is a sacred platform where we express and listen to each other's healing journeys. We give every cancer warrior, survivor, caregiver, and other individual involved in the healing journey a closed space to engage with one another. We listen to each other's unique journey without any judgments. Our Healing Circle Talks platform is chiefly designed to help cancer warriors feel that they are not alone. This circle is for everyone who has had an overwhelming journey with cancer and chooses to heal by sharing their stories. It is for those who have become martyrs and are still battling against cancer. We don't advise fixing or trying to save each other, but we believe we have a guiding light for those who need it.

About the Speaker

Bhavana Issar is the Founder and CEO of Caregiver Saathi, 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 caregivers who require equal emotional and psychological 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 unique 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 to caregivers from a distance. Losing my dad at that age significantly impacted the whole family. We were all those kinds of people who understood 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, the primary caregiver? I also had my paternal grandmother, who eventually outlived my dad for 17 years. We responded that we could stay strong and be there for each other. Many years later, I needed to find something that gave me a purpose, which I felt was closely linked to my life's experience. I was also significantly

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.

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Randy's book influenced me a lot, and I decided to list my childhood dreams and all the things 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 things I could include that made me happy. That led to starters like my inclination for motorbike riding. I wanted to do something for society and steer my career beyond typical. It allowed me to explore my life experience, capabilities, what the world needs, how I can contribute, and what would make me believe I have lived a purposeful life. I am also a fellow of a Sumedhas, where I have undergone personal development training called The Learning Theatre. My mentor, Raghu, often asked me if I was leading a dharmic (spiritual) life.

The motivation to lead a spiritual life was, 'Can you take your sufferings beyond your own experience?' This question bothered me, and I needed to figure out what big I could create from my suffering. Could I possibly take it to a level that would make a difference to other people and allow me to heal? I find many points at the cross-junction of my life's journey.

It's been vital 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. Initially, I had begun by observing patients and families of my father's disease, and still, I take particular interest in neurological conditions. However, as per my research on medical conditions, I found that the family and caregiver are the common denominator, irrespective of any medical condition. The caregiver's burden is universal for terminally ill or chronic patients. Many things happen daily; of course, there are challenges and uniqueness. Help for caregivers of cancer patients is undoubtedly different from other diseases, and there is nothing to take that away. Therefore, we throw light on cancer patient caregiverStressand not just the patient so that the caregiver and patient can lead a whole 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 matters'. Dimple says I was utterly in a different world when I had this phase of life. 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. I didn't know cancer could be so critical at that time if you don't do the right things at the right moment. One year passed with the treatment, and we felt everything was 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 simultaneously, but I never cared for a patient. My biggest regret is not caring for 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. Maybe I didn't hear her shriek; I'm unsure what happened then. So, in the morning, everyone woke up, and we discovered that she had fallen from her bed and had a back fracture. Since then, she has been on bed rest until her last breath. At that time, I had so much pressure from my exams that I could not dedicate my time to her. She had always wanted us kids to 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 myself that I would be his constant.

I became his cancer caregiver. Simultaneously, there were many things to do in college. So, academics, hospitals, caregiving, and Nitesh's other treatment phases happened together. One year had passed with his cancer treatment, and we thought everything was alright. But when it's cancer, you never know what will happen next. Within a few days, Nitesh was diagnosed with stage 3 cancer. That was the last stage. We have learned that cancer can be dangerous if you don't take proper care. Later, we met another stage in which the doctors informed us that only six months were left with him. This was my second phase of caregiving. We went to the 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 took a sabbatical because continuing as a cancer caregiver was becoming difficult while managing the job. After Nitesh passed away, I realized the impact a cancer caregiver creates on the patient. Unfortunately, these cancer caregivers are the most neglected in the healing journey. Cancer patient caregiverStressis acute. That's how I came through my journey as a cancer caregiver; my perception of 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 the Caregiver to the Cancer Patient

Dear Beloved, 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 relate to each other. Suddenly, I have become your caregiver, and I want to do whatever it takes to protect you, comfort and reassure you, and make your life as healing and 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, and laugh and cry throughout our journey.

I consider my caregiver's life as a fantastic 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, cancer research, 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 outings to give both of us a break. To be a good cancer caregiver, however, I also need your help. 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.

Many people love and care for you, who your diagnosis has impacted. 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 while reducing cancer patient caregiver stress. For a support team to function well, we need to identify what needs to be done. If you don't help me, how can I support you or do things that can help you? Then please tell me; it gives us a place to start, and 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 overwhelming. It would mean that I would have to guess how you feel or anticipate your needs. As a cancer caregiver, I also need some feedback about what things are working for us or not. Your needs will change over time, and it's important to let me know when they do. Finally, beloved, we are on separate journeys; since I cannot completely understand yours, there wholly when I will get exhausted, confused, angry, upset, and frightened because you are not behaving as

you used to, or your body is not responding the way we want it to be. Do not forget that those moments speak the depth of my love and care for you.

How Can Caregivers Take Care Of Yourself

Ms. Bhavana shares a story:- There was a legendary anthropologist, and she was in her 20s or 30s. She did a lot of studies across civilization, culture, and other disciplines. At a conference, someone asked her, Doctor, what is the first sign of civilization according to you? She answered that the first sign of civilization to me was a healed femur bone. The femur bone is the thigh bone, and in the animal kingdom, if an animal were to break their femur bone, then that is their 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, expressing care to heal another person signifies 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. Both caregivers need well-wishers, to be specific. Even the children can help; they can be a delight and change the environment's mood, and engaging children rather than keeping them away is essential. Recognizing what you can do if you are a long-distance caregiver is important. In such cases, they can be in touch and listen generously. A well-wisher of a caregiver has the superpower to create predictability and trust by calling up regularly. Unfortunately, we have pressure in our society that caregivers should sacrifice themselves for the cancer patient. Cancer patient caregiverStressis hardly recognized. Usually, caregivers are women. So, stereotypes for women automatically apply 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 must 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 essential to be strong and 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-term care and illness, grief is complicated because you know there is an intended death. You know that it will happen; you want to do the best you can offer. There is anticipatory grief that caregivers go through. There is complicated grief because you can't express it; you have to be hopeful, you want to stay committed, and you want to cure or heal, but at the same time, you feel low. So, your grief becomes complicated. We are in a world where 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; she didn't express or cry much, and she is good. But I'm afraid that's not right. Our rituals or expressions of grief are essential because you release through it, and you can go from one stage to another. If you hold on and don't express, you won't be able to move on. So, recognizing grief during the caregiving journey and expressing it, especially after it, is critical and not easy. Well-wishers, family members, and even long-distance caregivers can play a massive role in simply appreciating the complicated nature of grief that caregivers go through. Art is a wonderful way to express grief. For example, my mother was always fond of poetry and painting, but it stopped when she looked after someone. After my dad encouraged her, she responded and expressed herself through poetry and painting; now, she has an extensive collection of poems. Caregivers should find a creative expression. It doesn't need to 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 the 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 a.m. He gave us utensils and also used to bring homemade food for my parents. I might have helped search for accommodation if I had been at his place, 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 in Delhi, and due to weather changes, I developed tonsillitis and fever. My room was on the third floor; I planned to shift to the ground floor as it was too difficult 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 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, such as my wife, children, friends, and family. They have all helped me and have been fantastic support systems. I would say that when your friends come in and ask for help, then you should suggest to them to do one thing at a time. Otherwise, you may get multiple responsibilities simultaneously and have nothing at other times. The caregivers must seek advice from their friends about whatever they need to do so 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 to do 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 through this journey and proactively identified innovative ways to improve 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 also vulnerable from within. They must share their vulnerability with their friends or with whoever they feel comfortable with so they don't break. Dimple - I am very grateful to the people I found in the USA. 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 caregivers as much as possible.

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