Caring for the carer

Coping with cancer is difficult, but giving care and support during this difficult time is not an easy task either. While the natural response of most carers might be to put the patient’s physical and emotional needs ahead of their's, this becomes difficult to sustain especially if cancer treatment extends for a long duration. It might end up that the carer provides support at the cost of his/her own health. Caring for the carer is therefore an essential part of managing treatment. Please remember… if you don’t take care of yourself, you won’t be able to care for anyone else.

Coping with your feelings

“I feel exhausted… I want to do the best I can to care [for her] but I feel it will never be enough. I also feel guilty complaining about my exhaustion when I compare my struggles to hers.”

A Cancer Carer, 2012

“I feel frustrated. I spend a lot of time making sure to set a routine for my mother, but my elder sister disapproves of everything. I left my family and my work to be available for my mother and my sister does not care about it. I don’t even get time for myself. I am silent because I know my mother needs me.”

A Cancer Carer, 2017

“I am worried about him. He does not open as to ho he feels and if anything is bothering him. Since the diagnosis, I feel very anxious and I am scared that something bad might happen. I also feel guilty, that we did not think of getting a PSA (Prostate-Specific Antigen Test) done earlier. I cannot share my feelings with him. I need to be strong for him.”

A Cancer Carer, 2019

Caring for a loved one brings a whole range of emotions with it. Your feelings will change as you pass through different stages of diagnosis and treatment with your loved one. It is not unusual for carers to feel intense emotions. You will experience highs and lows and your feelings could range from shock to anger, from fear to hope. The process is nothing short of a rollercoaster ride. What a carer must understand is that they are entitled to all these feelings and that these feelings are normal.

But it is important to attend to your feelings especially if they tend to overwhelm you. Feelings of anger, grief, anxiety and depression may cloud your objectivity and start to affect your ability to act normally. The first step in coping with your feelings is to acknowledge them. Tell yourself that this is part of the process of caring for a loved one and that these feelings are normal. Also, remember that it is likely that other carers have felt the same way. It is helpful to know that you are not alone. Others have travelled this path before you and others will surely follow.

Another strong emotion to deal with is guilt. You may feel that your efforts are not enough. You may also feel guilty that you have to see your loved one suffer while you yourself are healthy. To try and tackle this feeling, first learn not to be too harsh on yourself. Remember you are doing the best you can. Also, learn to forgive yourself for any mistakes you might make. No one is perfect. Try to let go of your mistakes.

Making time for yourself

While looking at your loved one’s suffering, you may feel that your needs aren't important. It may also be that by the time you attend to everything, you don’t have time for yourself. While most carers experience this, do remember that caring for your needs is important to give you the perspective and strength to carry on. Taking time to recharge your mind, body, and spirit can help you be a better caregiver. Self-care is an important aspect for the caregivers. It involves mainly six dimensions.

  • Mind

    -in the time of stress, you need to take control of your thoughts and focus on the present. Worry about the future will only make you confused, tiresome and bring a sense of fear, chaos and uncertainty
  • Body

    -you need to exercise, sleep and eat well to keep you body pumped up
  • Spirit

    –searching for spiritual sustenance is an important exercise to practice. This helps you make sense of your life, giving meaning and a deeper understanding of many things. It not only helps you to stay calm but also helps in rearranging your priorities
  • Energy

    –it is necessary for you to preserve your energy. Whenever possible try to switch from the patient and engage in something that might keep you energised and bring a greater sense of peace and pleasure. It is important for you to be happy to make others happy.
  • Priorities

    –start being realistic. You need to understand that you are not a superhuman and have limitations too. Try answering a few questions for yourself – are you overdoing things for your patient? Are you doing things that your patient can do themselves? Are you getting too involved? Are you doing things because your patient wants you to do or because you feel obliged to do? You need to start thinking clearly. Be clear and sort out the things that are happening.
  • Strengths

    –It is important for you to identify your strengths. Most carers fail to do so in the time of stress. You need to remember that you are unique and have a personality of your own which can bring talents in your role of care giving. Focus on what is it that you are good at doing.
  • Make sure you keep a regular time for yourself (weekly, if not daily) to attend to your tasks like answering emails, catching up on work etc. Make sure you continue with your personal activities like exercise and visits to your physician to take care of your health. You do not want your health to suffer and you will not be of any use to your loved one then. Also, make sure you give yourself a “treat” now and again. It may be something as simple as connecting with friends or watching a movie. Remember you need some tender love and care just as the person you are caring for.

    Asking for help

    Accepting help from others isn't always easy. When a difficult situation arises, people tend to distance themselves from the situation. While your instinct might be to handle things on your own, the situation can get harder as your loved one goes through treatment. As you take on more responsibility for the treatment process, you might need to ask for help as you might be taking on too much.

    Also, remember that while some people distance themselves from tough situations, others might want to help but not know how to. In such cases it does not hurt to ask. Reach out to friends and family to see how they could help. You might be pleasantly surprised with what people are willing to help you with. You could ask for help with:

    • Household chores, such as cooking, cleaning, shopping
    • Taking care of children or elders in the family
    • Finding information that you might need
    • Talking with you to listen to your feelings

    While you might find comfort with friends and family, another source to access are cancer support groups. Ask your physician for cancer support groups in your vicinity that you could contact. It always helps to talk to others in a similar situation. If there are no physical cancer support groups near where you live, you could also find online communities where you could talk to others in a similar situation. Either way, it helps to have a friend you can talk to..