Caring for the Caregiver

The family is an important institution that influences its members and relatives throughout the life span. Each individual in the family plays an integral role in the wellbeing of the other members. If the well-being of any of the family members is affected, it affects the entire family. Mental illness is one such factor that can have a detrimental effect on the entire family system. User-survivors of mental health concerns need continuous motivation and support from their caregivers. While, it is difficult to conclude if it is by choice, cultural influence, or lack of means, families prefer to be actively onvolved in the caring of their ailing members (ICMR, 1988; Kulhara & Wig, 1978). Though family members may not always be equipped with the skills and information necessary to providing care, the responsibility of caregiving lies with them and can add to the existing burden being faced by the family (Ilango & Nirmala; Hatfield, 1978).

Who gets cared for and who doesn’t?

The burden of caregiving may not be always equally distributed amongst all family members. Traditionally within society women have been assigned the role of nurturers and home-makers (Gerstel & Gallagher, 1993).  As a result, when a family member is diagnosed with a physical or mental health concern it is automatically assumed that the care-giving responsibilities will be fulfilled by the female members of the household. Often women aren’t provided with any support that may be required to undertake these responsibilities which by themselves are an additional burden on them. Performing these multiple responsibilities in the absence of support makes women vulnerable to physical as well as mental health problems. However, Women suffering from mental health problems may nopt receive any care from their families. Research has particularly shown that married women experiencing mental health concerns are more likely to be deserted by their marital families ( Nambi, 2005) Often times, their experiences of distress may be trivialized and may be seen as attributes of femininity. Thus, it is crucial for families to redistribute care-giving responsibilities equally so that the female members of the household do not feel overwhelmed and overburdened.  It may be a good idea for the entire family to jointly shoulder the care-giving responsibility and support each other in the process.

Preventing care-giver burnout:

Care-giving is a very challenging responsibility that requires a significant investment of time, energy and emotion. Caregivers may often underestimate the challenges involved in the same (Janardhan et al. 2011) and maybe left with no time for self-care. This in turn may have an adverse impact on their health and well-being.

In order to care effectively caregivers must prioritize their own health and wellbeing. A first step in doing so can be the acknowledgement of their own physical and psychological needs.

A few simple things that can be helpful in ensuring the well-being of caregiver are as follows:

1. Psychoeducate yourself – Read up about your loved ones’ diagnosis which will help develop a more empathetic understanding of their experience.
2. Don’t Judge yourself – When faced with with frustration, remember that it is alright to feel so and not blame yourself.
3. Widen the net – When you feel that you can’t handle a particular issue or situation, feel free to ask for assistance from others in your extended social network. Identify people who are supportive and talk to them during times of distress. Your support system can be your family members, loved ones, relatives, friends or even a colleague, who seem helpful and reliable.
4. Delegate responsibility – Don’t force yourself to do things that you are not able to do just because you are supposed to dedicate yourself to it.
   5. Pause – No matter how busy you are, take time out to eat, relax and rest even if for short periods. Understand your own emotional and psychological needs. De-stress yourself by engaging in enjoyable activities, hobbies, meditation etc.

Accessing professional help for yourself

Caregiving is a full-time responsibility. Through years of caregiving the role of caregiver can become synonymous with one’s identity which in turn can become a barrier to accessing help.  Even when there is a pressing need for the same. Caregivers may often feel that they cannot be the ones seeking help and therefore not share their innermost feelings with anyone because of the fear of being judged and misunderstood.  At iCALL we understand that the needs of a caregiver are equally important to that of user/survivor’s mental health concerns.  Our team of full-time, trained and qualified professionals can not only provide psychoeducation but also a safe and affirmative space for you to share your deepest concerns without the fear of being judged on your ability as a caregiver. ICALL is a completely anonymous and confidential service which can be availed free of cost over telephone and emails. Feel free to reach out to us from Monday to Saturday from 8 am to 10 pm on  022 – 25521111 or at icall@tiss.edu

References:

Bulger, M. W., Wandersman, A., & Goldman, C. R. (1993). Burdens and gratifications of caregiving: Appraisal of parental care of adults with schizophrenia. American Journal of Orthopsychiatry, 63(2), 255-265. doi:10.1037/h0079437

Gerstael, N. and Gallagher, S.K. (1993). Kinkeeping and Distress: Gender, recipients of care and work-family conflict. Journal of Marriage and the Family, 55(2), 598-607.

Hatfield, A.B., (1978) .Psychological Costs of Schizophrenia to the Family,” Social Work,35, pp 355-59.

ICMR (1988). Final Report : Multi centered collaborative study of  actors associated with the course and outcome of chronic Schizophrenics. New Delhi, ICMR.

Ilango, P., & Nirmala, V. (1992). Burden of care of chronic mental-illness. Indian Journal of Social Work, 53(1), 23-28.

Janardhana, N., Shravya, R., Naidu, D. M., Saraswathy, L., & Seshan, V. (2011). Giving Care to Men and Women with Mental Illness. Indian Journal of Gender Studies, 18(3), 405-424. doi:10.1177/097152151101800306

Kulhara P, Wig NN (1978). The Chronicity of Schizophrenia in North- West India. British Journal Psychiatry, 90, 132-186.

Leff,J. (1994). Working with families of Schizophrenic patients. British Journal of Psychiatry, 164 (supp. 23), 71-76.

Murthy R.S. (2006),  Mental Health by the People, Bangalore : People’s Action for Mental Health (PAMH).

Nambi, S. (2005). Marriage, mental health and the Indian legislation. Indian journal of psychiatry, 47(1), 3.

Pai, S and Kapur, R.L. (1981), “The Burden on the Family of a Psychiatric Patient: Development of an Interview Schedule”, British Journal of Psychiatry, 138, 332 – 35.

R. Thara, R. Padmavati, S. Kumar and L. Srinivasan (1998). ‘’Burden Assessment Schedule Instrument to Assess Burden On Caregivers Of Chronic Mentally Ill’’, Indian Journal Psychiatry, 40, 21-29.

Psychological First Aid. An Australian guide to supporting people affected by disaster.. (2016). Australian Red Cross. Retrieved 25 September 2016, from http://www.redcross.org.au/files/Psychological_First_Aid_An_Australian_Guide.pdf