When your dearest family member is diagnosed with cancer, you are pushed into a new role as a caregiver. The diagnosis of cancer and seeing your family members through the treatment can be an overwhelming and daunting experience. The duration of caregiving and support can be very long. A few of the duties of a cancer caregiver includes helping the patient with day-to-day activities, scheduling an appointment, accompanying them to hospitals, staying with them during hospitalization, managing finances, help them in decision-making, taking care of their special nutritional requirement, providing social, emotional and spiritual support. Caregivers have minimal preparation or training regarding cancer care and therapy, rendering them vulnerable to significant psychological and physical consequences.
At Cytecare, our oncology team is aware of the importance of caregiver’s important role in the management of cancer, treatment planning, decision making.
You may feel confused about what to do and what not to do in your new role. Do not feel guilty or blame yourself for not being able to do certain things the expected way. Try and talk to people or support groups who have been in this role to understand the challenges. You may also join support groups online. You will learn about your role with time.
Always remember that you do not have to do this alone. Even if you’re the primary caretaker, you may enlist the help of other family members and friends, with varied expertise, to help out with the tasks. Consider requesting a friend or another family member to take turns while staying in hospital or dropping your children to school etc.
Many caregivers may feel awkward to ask others for help. Know that there is nothing wrong with seeking help or delegating a task or asking a friend to volunteer. You may also contact professional help (eg: Nurse, homecare services, etc.) to help you.
Try to have people on standby to fill in for you or run errands if need be. This will help you stay calm and avoid panic situations. Remember that by seeking help, you will have more energy, your loved one may feel less guilty about overloading you with their responsibility, other helpers may offer the skill or time that you may not have. Be ready to accept a “NO” as an answer from some too.
Do not panic. Understanding the diagnosis, the expected treatment and the road ahead can help you. In addition to talking to your doctor, you may also read up about new research and possible new treatments from scientific forums and support groups and talk to your oncologist. Understand the possible side effects of treatment, the cost involved and seek a second opinion, if needed. Ask your oncologist, the possible challenges in caregiving through the trajectory of the illness and how to equip yourself.
There may be too many things to manage at home, work in addition to taking care of your family member. It is possible that it will be hard to stay on top of things. Using checklists prior to talking to an oncologist, setting reminders for a patient appointment, using journals to note down patient side effects, using medicine box organizer to help not miss a dose, etc. can be few ways to help yourself in managing the multitude of tasks.
Having a positive attitude can make a lot of difference to your own self and the patient. An optimistic outlook sets a warmer and supportive tone in everything you do and serves as a constant motivation for the cancer patient. You may not be able to control the progression of the disease or your own emotions, but you can and must control your reactions. Talking to friends, professionals or seeking spiritual comfort helps most people.
It is essential for the patient and the caregiver to communicate openly and honestly. Understand what the patient is going through, take heed of their opinions and be upfront about your feelings and commitments. Also, try and accept the patient, as they are, physical limitations, psychological temperament and all. Once you develop an accepting attitude, things will get easier. Let the patient know that they are still in control of their actions and their life. You may take charge but allow them the freedom of being in charge and calling the shots. Do not take the anger of your loved one personally. Understand that it is common for them to direct their feelings of stress or anger towards you. Do not become overbearing in your efforts to help.
There is no right way of how you must feel after learning about the diagnosis and while taking care of your loved ones. You may feel sad, angry, grief, guilt, and loneliness. It is important to know that this is normal. You don’t have to pretend to be cheerful. It is okay to cry or show that you are upset. Identify signs and symptoms of stress, anxiety and depression and seek help when they interfere with your health.
You may feel too selfish to take care of yourself when your family member is having cancer. But it is important that both your physical and mental health is given its share of care, for you to do the job of a cancer caregiver, without getting burnt-out or stressed. Here are a few things you must continue to do, in addition to taking care of your family member.