Healing Space | World Cancer Day 2024: Why caregivers also need caregiving support

Caregivers do feel but rarely address the emotional burden of caregiving. They feel overwhelmed, anxious, even depressed, feel fear, grief, social isolation, financial strain and more. (Illustration by Suneesh K)

Note to readers: Healing Space is a weekly series that helps you dive into your mental health and take charge of your wellbeing through practical DIY self-care methods.

A diagnosis of cancer can feel nightmarish for any individual or their family. The first thought and line of action is getting the correct medical attention for the patient, finding the right doctor, a hospital or care centre where the required procedures will be conveniently accessible as well as affordable. You also need to help patients feel comfortable. They may need to manage their pain, medications, chemotherapy, reschedule jobs, appointments, and face the physical fallout of the impact such as muscle weakness, body ache, hair loss. It’s also a time of fear, anxiety, worry and can bring feelings of loneliness, a feeling of urgency, guilt, regret, anger or shame for many patients. Support is an essential part of the recovery process. Counselling and mental health support is vital here.

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Caregivers get neglected in the process and also play a crucial role in the therapeutic and recovery process for a patient with the diagnosis. They are as crucial for patients as the diagnosis process and medications themselves. Studies have shown a strong correlation between caregiver support and improved patient outcomes. Patients can have faster recovery times, reduced stress and anxiety, have better adherence to treatment plans. They have an improved quality of life when they feel supported and understood. This vastly reduces long-term complications and can minimise the risk of depression, anxiety and helps them overcome other challenges such as loss of self-image, confidence, and identity.

Practical ways in which caregivers offer support is in managing medical needs, from managing medication to making and attending appointments and follow ups. It helps keep patients, especially those who may feel overwhelmed, on track for recovery. Daily meals, keeping the home clean, helping with childcare if they have children, mobility, personal hygiene, transportation to and from medical health centres and procuring the medication also require a supportive caregiver. Managing finances, procuring funds, keeping track of insurance and difficult follow ups on claims or donations require a trustworthy support system. Emotional support and advocacy, reassurance, encouragement, someone to talk to, comforting words and kind gestures such as a warm home cooked meal contribute greatly to a patient’s recovery.

Caregivers responsibilities are not clearly defined and can be comprehensive. They may need to listen, be there for the patient, provide a safe space for the patient to vent, validate them, reassure them, address their fears, uncertainties, help them make decisions.

Offering a listening ear: Providing a safe space for the patient to express their fears, anxieties, and emotions, create a calm environment in which healing can be optimised, encourage them to keep going when they are filled with despair and want to give up and also help them recognise, mark and celebrate the signs of their progress.

However, caregivers also do feel the emotional burden but rarely address it. They are also overwhelmed, feel anxious, can get depressed, feel fear and grief. They may feel social isolation and become disconnected from their family and friends. They can feel the financial strain, may have to take extended time off work in order to manage the patient, worry about money and have to make difficult choices such as offsetting patient treatment plans against affordability in the long-term future. These can raise feelings of guilt, shame, feeling trapped and despair. They may feel physically and mentally exhausted, have to juggle responsibilities and may not have anyone they can unburden themselves to, or rely on themselves.

This puts them at an enhanced risk for depression, anxiety, reflected in inability to concentrate, sleep disturbances, appetite loss, loss of their own physical health. Spouses have different needs from children and parents in a home where someone has been diagnosed. It may help to have counsellors and therapists sit with each group and work with them to ease their understanding of the situation, answer questions, and address fears.

Ways caregivers can support themselves

1.    Seek support: Join support groups, talk to therapists, connect with other caregivers.

2.   Practise self-care: Prioritise sleep, healthy eating, exercise, and relaxation activities.

3.   Set boundaries: Delegate tasks, say no when needed, and schedule time for yourself.

4.  Seek professional help: Reach out for mental health support if needed.

5.  Ask for support: Don’t try to go it alone, ask for family and friends to step in for relief periodically.