No one cares!

(Muhammad Areeb, karachi)

I have forgotten everything in life, that how to take care of myself, how to interact with people and I really cannot remember what are the leisure activities?

Even I did not get time to offer my prayers. I don’t know what is happening around me? Yes I do remember the time when I use to share my feelings to my friends, when I use to attend different ceremonies, it was that time when my son was in good health. Personally, I often feel very sad, when I think of my son who has schizophrenia a chronic mental illness that has made him isolated from society, no interest in any activity, unable to care for himself. Since he has been shown the signs of this illness, he is totally dependent on me. Now I think God have created me to care him and ignore rest of the world.
These were words and feelings of a mother Anisa 53 year old lady who is responsible to care of her 21 year old son.

This is not only one scenario, there are many more people who are facing same issue in our society.

This scenario raised thought provoking questions in my mind that how to find balance between care giving and other activities? How family members take care of themselves?

Family caregivers are often the primary source of social and emotional support for mentally ill people, and they receive significant amount of support from family caregivers in managing their illness. Caregivers are defined as those providing unpaid assistance, such as personal care, bathing, dressing, feeding, transportation to the doctors' appointments, help with medications and other treatments National Alliance for Caregiving (2009). Caregivers may be a spouse, sibling, parent, friend, or relative. They have a vital role in assisting in the most difficult moments of a loved one's life. Caregivers are those who provide services to an Individual in need, typically one suffering from chronic illness or disability, which result in loss of independence and functioning. As in mental illnesses most of these individuals are dependent on their family members. Recent studies estimates that between one-third and two-thirds of persons with long-term psychiatric disabilities currently reside with family members. An estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities (National Alliance for Caregiving 2009).

In this article I will discuss the effects of caregiving on family caregivers and few recommendations for family caregivers. The troubles facing by family caregivers with severe mental illness impact on all aspect of the caregiver's life, including physical, social, emotional, and psychological health.

Chronic mental illnesses affect and involve the entire family and not just the individual who is ill as these clients are unable to carry out the tasks of daily living. Family caregivers perform multiple tasks including caring to their sick family members. The caregivers do not take care about their health even they ignore their physical and emotional needs. Moreover they are so much involved in caregiving that they forgot to take care about their physical and emotional needs, and ultimately they end up with many physical and emotional problems. The physical problems include fatigue, chronic pain, loss of physical strength, loss of appetite, and weight loss. Moreover the experience of having a family member with mental illness can lead to persistent sense of loss and grief in care givers. The patient behavioral problems such as being verbally abusive, withdrawal, abnormal behavior that is disturbing and dependency contribute to the experiences of burden on care giver. Sometimes family caregivers feel absolutely defeated, and have feelings of anxiety, anger and stress. According to the MetLife Study of Working Caregivers and Employer Health Care Costs (2004) Employees in the U.S. who are caring for an older relative are more likely to report health problems like depression, diabetes, hypertension or heart disease. It also found that caregiving may be closely associated with high risk behaviors like smoking and alcohol consumption. Basheer. S, Niazi. R. S, Minhas F. A, Najam. N. (2005) reported that caregivrs of young mentally ill and with duration of eighteen months or more have high levell of depression and anxiety. They often face challenges associated with role strain and even they are not able to perform their normal daily activities. They feel difficulty in interacting with people and their routine life gets disturb. Moreover there are some other factors which can increase the burden on caregivers like stigma associated with mental illness, financial burden and decreased social support. The financial burden is due to medical costs and the patient’s economic dependency. The other reason is due to dependency of sick family member so caregiver not able to maintain their job responsibility.

Supporting a person with mental illness can be tiring work. The role of caregiver is important in order to provide support so it is essential that they look after themselves. If the caregiver is distressed, they may not be able to provide support to their ill family member. In addition the caregiver should join self help group or peer support talk and debrief with them. It also helps to improve mood and provides an opportunity to develop friendship and rebuild social network. In addition it can help them to receive support which eventually fosters wellbeing. The family members should understand the family caregiver suffering and help them in provision of material resources such as money and transportation or physical assistance. The other interventions are to take time for relaxation such as exercise regularly and meet a friend or watch a movie to relax because it will help to manage stress. The caregivers should seek information regarding care and management of ill family member so they can provide the best care to their loved one. It also provides a sense of caring and acceptance and reduces distress.

In conclusion families are a vital part of the care system for persons with a chronic mental illness. Successful management of chronic mental illness relies significantly on family caregivers. Caregiving is a stressful task so it is very important to carefully assess the caregiver’s needs. If the caregiver is distressed, they may not be able to provide support to their ill family member. It is very important to provide them support and help them in order to reduce their stress and help them to live a healthy life.

Muhammad Areeb
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