BEING A CAREGIVER- YOU’LL NEED TO TAKE CARE OF YOURSELF, TOO!

                                                 For Your Amigos Foundation, Authored by Luckachan K. James

Cancer is one of the most common and life-threatening diseases which is prevalent in the world. According to the studies done by the World Health Organization (WHO), which says that one in 10 Indians are prone to become cancer patients during their lifetime and one in 15 will have the possibility of death due to the disease. (cancer India) We are more conscious of the psychological problems faced by cancer patients. And several studies imply also that, those who are diagnosed with cancer have several psychological issues because of the severity of the disease.

Informal caregiving- It is intense! 

The term “informal caregiver” itself refers to the family members of the patient such as husband, wife, and children. The caregiver’s role might change according to the patient. This aspect is one of the least bothered and explored areas in our country. The emotional pressure that they go through while they look after the patient is considerably huge.

The reason, why I chose this topic, is because of my familiarity with this from my real-life experience. When my mother was diagnosed with cancer, I was not prepared for the mental toll that was about to take us by storm. My initial concern was her treatment. How will I treat my mother and who will help me to do that? The doctor was quite straightforward regarding the disease and he was the first person to console me. I tried to control my emotions around my mother so that she would stay strong. But when I started the role of caregiving, my relatives and my neighbours turned out to be my enemies. They began to pressurize me regarding the treatment. Moreover, my relatives and neighbours would visit my mother and, intentionally or not, they’d tell her about the faults and bad effects of the treatment and also stress her over her chance of survival. The worst was when they’d sympathize and look at her in pity, which was too disturbing for me. All of this had put my mother and me in mental distress. But somehow I managed to do my part beautifully by giving her the moral support and confidence she needed to fight the disease.

Caregiving- The hardship  

 Stress: Stress is one of the common problems faced by caregivers. This stress can occur due to various factors such as caregiving, financial difficulties, changes in role and lifestyle, and concern about the future. This stress can cause several other problems in the caregiver such as lack of interest and difficulty in dealing with emotions. Anxiety: Anxiety can be one of the problems faced by caregivers of cancer patients. This could be caused due to over distress and excessive worry about the health condition of the patient. They will always be anxious about anything especially about the treatments and they will not be able to control their emotions.

Stress can be caused because of the concern regarding the patient. If the bonding of the caregiver with the patient is very deep (Eg: if the wife is the patient and husband is the caregiver, if the caregiver is one of the children) the mental stress will be high. Sometimes, most family members will not reveal the exact seriousness of the level of severity of the disease to the patient in order to keep up the mental strength of the patient, but at the same time, it is the usual practice of the distant relatives and neighbours to meet the patient and to talk about various death statistics and incidents regarding cancer.

 Influence of the Society on Caregiving Stress

Cancer is a deadly disease. Yes. It is true. But it is treatable and curable up to a certain level. According to the perspective of some people in society, cancer is not treatable. They will prefer homely treatments and try to predict the life expectancy of the patient. It is the problem in the attitude of the people. They use home visits as a weapon to induce stress in the whole family by talking about bad news, or by showing too much sympathy. And sometimes they create unwanted confusions among the family also. All these will increase stress among caregivers. But society should act as a support system for that family especially for the patient and for the caregiver because they are the two people who emotionally suffer a lot because of this.

Factors Causing Caregiver Stress

o   Disease and caregiving: One of the reasons for the stress is extensive thinking about the disease and the caretaking. It is clear that caregiving is not an easy task. It requires the physical as well as mental presence of the caregiver. If the caregiver is also worried about the disease, caregiving will turn out to be a burden.

o   Confusions regarding the treatment: If one family member is diagnosed with cancer, there will be a discussion on the treatment procedures like which hospital, which method of treatment, etc. in such cases this confusion and conflicts will create more pressure on the caregiver.

o   Medical expenses and financial difficulties: It is known that cancer is a deadly disease as well as it is too costly to treat. If the person is not well enough to manage all the medical expenses of the treatment, obviously tension will be more for the caregiver, sometimes even more than the patient. Often times, many of the family won’t be in the position to meet the medical requirements due to the financial crisis. This can definitely trigger the mind of the caregiver.

o   Change in lifestyle: One of the major changes that will happen for the caregiver is the lifestyle. Sometimes, they might not be able to meet their daily needs. They might not get adequate sleep. So there will be a complete change in their lifestyle.

o   Change in the role: This is one of the quite challenging tasks that will be happening to a caregiver. Before cancer, the person will have so much time to spend and he will be treated so special in the family. When they start to take up the role of a caregiver there will be a significant change in their role and they might not be able to enjoy the luxuries that they once used to.

o   Concern about the future: If the caregiver is very young in the family and if they are taking care of the patient, they will be worried about his future and his career. But then, he would not be in a position to express it out.

Cancer affects the life of the caregiver in many ways and it affects the quality of life and psychological well-being. The role of the informal caregiver is to provide care and support for the patient throughout the period and to assist the patient in needs. When the demand for service and resources exceeds the limit the caregiver will be distressed and may have various psychological issues. This distress can cause a negative effect on the psychological well-being of the caregiver. Gradually, this distress can affect the physiological well-being of the caregiver resulting in insomnia and other physiological troubles. The effects of distress can affect the quality of life and lead to anxiety, depression, loss of control, difficulty in coping with emotions, and difficulty in caregiving roles. (M.SchafenackerDeniseWeiss, 2012)

How Do We Solve This?

The psychological issues faced by the caregivers are one of the least discussed topics in our society. But we have to think about the emotional distress that they are facing this caregiving task. It is very important to suggest solutions to their problem.

Ø  The best solution for them is support from other family members themselves. Most of the time, one who is taking care of the patient will be left alone from other members. This will create more distress for the caregiver. If the other family members are supporting him/her/, there will be a change in the stress.

Ø  Another important measure to reduce stress is appreciation. It is the duty and responsibility of the family members and the neighbours to appreciate the effort taken by the caregiver. If the family members show an attitude to appreciate the caregiver, he/she will be very happy and it will create hope and confidence in the caregiver.

Ø  Implementing support groups: it is one of the essential facilities which have to be implemented in the community. There should have a support group consisting of people who are suffering from similar issues. Through this group work, they will get enough space to express their emotions and problems and it will definitely give relief. The government should take initiatives for the implementation of such projects.

Ø  Seek help from a professional: it is very important to seek help from a professional if the condition is getting worse and goes out of control of the person. Sometimes the support from family as well as from others would not help them to solve the psychological distress. So seeking help from professionals is much better.

Ø  Psychological well-being is important for every person. If the person is distressed or having a troubled mind will not be able to cope up with the emotions and he will definitely find it difficult to face the different situations in life.