‘It was shocking’: How to manage being a family caregiver for a cancer patient

Trigger Warning: Mentions of illness and mental health challenges

When Manav's' mother got diagnosed with cancer in early 1990s, it came as a shock for the entire family. "It was shocking. It wasn't even the last thing we were expecting. When we got the news, we just didn't know what to do," he shares, adding, "In those times, the awareness about cancer was limited and we felt helpless. We went to several doctors before we could get the right treatment for her. To see my mom go through all the effects was heartbreaking."

National Cancer Awareness Day is observed in India on November 7 to raise awareness about the disease and its treatment. While the resources and support for cancer patients have been increasing over the years, the role of family caregivers in the journey of cancer treatment and recovery is often overlooked, and the support they need is often neglected. Caring for a family member or friend with cancer comes with a lot of responsibility and can be challenging.

Dr. Indoo Ammbulkar, Director- Medical Oncology, HCG Cancer Center, Borivali, states, "As a caregiver, you provide physical and emotional support, playing a very significant role in their journey."

Besides extending physical and logistical support like helping them with day-to-day activities, taking them for treatment sessions, etc., caregivers also have to play other roles. Dr. Ammbulkar suggests the following ways family and friends can support patients:

Get the facts right
It is important to be informed about the type of cancer, various treatment alternatives, and the chances of success. With that information, you will help your loved one through the stage and prepare for potential side effects. Consult with your oncologist to better understand the treatment process and what other resources might be helpful for you and the patient.

Motivate them
Cancer treatment is very exhaustive, not just physically but mentally as well. Be a source of inspiration for them by spending time with the patient to improve their mood. Just sitting there for each session of treatment, talking about their improvement, or listening to them has a huge impact.

Plan for financial concerns
Arrange finances. This is usually a major concern. Meet with the oncologist and a financial advisor to understand the cost of treatment and any insurance or financial aid options. Some organisations offer support for cancer patients and families. Early planning can ease financial pressures, allowing you to focus on caregiving.

Support the mental well-being of the patient
Not only does cancer affect the patient but also the emotional well-being of the care partner. Positivity is key for best results; provide encouragement and comfort, where the patient knows they're not alone in this journey and heard. Alongside that, the caregiver should also ensure their well-being.

While family and friends often fulfill the responsibility of the caregiver, one often forgets that they might also need motivation and encouragement and they might also need support for their mental well-being.

Challenges faced by family caregivers of cancer patients

To see a loved one go through the complications of cancer can cause emotional turmoil. Manav shares, "My mom had a traditional mindset and we had to struggle to get her to take medicines or go for treatment. I saw my father dedicate so much time to her well-being, from taking her to doctors to caring for her at home both during and after the treatment."

Dr. Shubhangni Jain, a Delhi-based counselling and rehabilitation psychologist and educator, who has also been a caregiver for a cancer patient in her family, shares, "Knowing that a loved one has been diagnosed with cancer is a shocking and deeply emotional experience. Initially, it was a mix of disbelief and numbness, with emotions that range from intense sadness to anger and fear."

The impact of a cancer diagnosis can affect the well-being of family caregivers in several ways.

Utkarsha Jagga, a Delhi-based counselling psychologist and founder of The Coping Central, notes, "Family and friends of cancer patients often experience anxiety, fear, sadness and a sense of helplessness. The caregivers can struggle with the uncertainty that comes along with the diagnosis and might also develop a sense of hypervigilance toward their health and other people's health. The strain of caregiving can lead to burnout, especially when balancing other responsibilities, and may also trigger feelings of isolation or grief as they witness their loved one's struggle."

Dr. Jain elaborates on the various challenges that a caregiver might face and must be prepared for:

• Emotional and psychological distress: Family members and close friends often experience a range of intense emotions, including fear, sadness, guilt, anger and helplessness. They can experience anxiety, depression and other mental health issues.
• Physical impact: Caregivers often experience physical strain due to increased responsibilities and disrupted routines, such as sleepless nights or managing medications.
• Financial and logistical challenges: Cancer treatment can be financially draining. Loved ones might face pressure to manage or contribute to high treatment costs, potentially disrupting their work and affecting financial stability.
• Social isolation: Family members often have limited time for social interactions, as caregiving takes precedence. This can lead to a sense of isolation, as they may feel misunderstood by those who haven't experienced similar circumstances.

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How did she deal with these challenges in her journey as a caregiver?

"Acknowledging these feelings without judgment helped me to create space for genuine processing. We, within our family, sat together and discussed the situation and how to move forward with this shocking news. We had a detailed discussion with doctors and tried to understand even the small details about the problem and treatment. All of us divided our roles rather than leaving everything to one person. This somehow strengthened our family bond as well. We focused on each day, each symptom and each side effect of surgery, chemotherapy and radiation therapy of our loved one. We tried our best to keep ourselves calm and positive," Dr. Jain says.

How can caregivers support their well-being?

Given the range of experiences that a caregiver undergoes alongside the patient, it becomes important for them to care for their well-being as much as they care for their loved one's health. Cancer and mental health experts share tips to ensure that.

Dr. Ammbulkar suggests, "Caregiving is an exhausting role that can quickly lead to burnout. Self-care must be incorporated. Time for one's self, pursuing hobbies and attending support groups for caregivers is highly recommended for shared experiences and strategies on the situation. Your well-being will make you a much stronger support for your loved one," adding, "Most hospitals have cancer support groups for various communities. Caregivers can find solace in these networks, gaining insights and camaraderie from others who have had similar experiences. Seek out these resources with the advice of your oncologist pr psycho-oncologist."

Jagga says, "A cancer diagnosis and caretaking for a loved one with that diagnosis can be a life-changing experience. Along with the patient, the caregiver should be advised to have a strong support system and a consistent channel of reliable information and knowledge. It is often advisable for caregivers to undergo personal therapy as discussing feelings and concerns can reduce stress. It is also helpful to learn to establish realistic caregiving limits and ask for help from others."

"Missing your old life, and the connection that you might have had with the patient is very common, but developing new routines and being able to connect with the patient (and others in their lives) in a new way is extremely important to ensure well-being. Caregiving can be physically demanding, so caregivers should aim to maintain their health through proper nutrition, exercise and rest," she adds.

From her personal and professional experience, Dr. Jain shares the following tips for caregivers:

• Prioritise communication: Open, honest communication with the patient, medical team and other family members is essential. Regularly check in with the patient to understand their needs and emotions.
• Build a support network: Caregivers don't have to face the journey alone. Enlist the help of family, friends or community resources to share responsibilities.
• Stay informed: Understanding the patient's diagnosis, treatment options and potential side effects can empower you to make informed decisions and reduce anxiety. The more you know, the better equipped you'll be to support the patient effectively.
• Practice self-care and set boundaries: Caregivers often overlook their health and well-being, but self-care is essential. Ensure you're eating well, staying active and getting enough sleep. Set boundaries around what you can realistically handle.
• Seek professional counselling if needed: Counselling can offer a safe space to process complex emotions, reduce stress and build coping strategies. Many cancer centres provide resources and referrals for caregiver support.
• Celebrate small wins: Cancer journeys are emotionally demanding, so take time to celebrate small milestones or good days. These moments can offer motivation and uplift your spirits.
• Remember your "why": Reflect on why you're in this role and the love and connection that motivates you. Recognising your deeper purpose as a caregiver can provide resilience on tough days and a sense of fulfillment despite hardships.
• Embrace flexibility and patience: Cancer journeys rarely follow a straightforward path. Be flexible in adjusting to unexpected changes and approach the experience with patience.
• Focus on one day at a time: The cancer journey can be unpredictable, with many highs and lows. Try not to dwell too much on the future; focus instead on managing each day as it comes.

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Disclaimer: This is for informational purposes only and does not replace professional medical advice. Consult a qualified medical expert for personalised guidance.