Taking Care of the Caregiver

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A caregiver is understood as someone who provides physical or psychological care to others who are not able to help themselves on their own and are dependent. This could be owing to various reasons such as declining health due to ageing, physical injuries and ailments like spinal cord injuries, stroke, traumatic brain injury or physical disabilities, addiction and psychological conditions like posttraumatic stress disorder or intellectual deficits. They generally assist in the performance of activities of daily living, such as feeding, monitoring medications, hygiene etc. Often, family members are compelled to assume caregiving roles, especially in cases of individuals with intellectual disability, or declining health due to aging, among others. Family caregivers are looked at as an extension of health care systems, often performing complex medical and therapeutic tasks and helping a loved one perform and adhere to therapeutic regimens. 


Although rewarding, informal caregiving can be a demanding role. Caregivers of individuals in rehabilitation have unique needs and concerns that directly affect their as well as their care recipient’s health and well-being.Caregiver burnout is a state of physical, emotional and mental exhaustion that may happen when one provides help beyond their capacity ;it is when someone devotes the most of their time, energy and resources to taking care of others, so much so that it leads to self-neglect and severely impacts their ability to complete their personal responsibilities. The lack of adequate training, preparation, or ongoing support from rehabilitation systems to caregivers often contributes to the erosion of their physical and emotional health and their financial resources, experiencing considerable burden and disruption of their own physical and mental well-being and social functioning as a consequence. Though everyone’s experience of burnout is different, some of the common emotional symptoms characterizing burnout include fatigue, anxiety, guilt, frustration, denial, a feeling of lack of control and a sense of loneliness. 


Ageing caregivers may be particularly vulnerable because caregiving demands and the stress associated may tax their physical health, exacerbating existing chronic health conditions. Besides, they may also have lingering concerns regarding who will take care of their loved one if and when they are unable to do so, especially in cases when the carerecipients are adult children with disabilities. With persons diagnosed with severe mental illnesses, some of the foremost needs are related to developing the right attitude towards the care of the individual and management of apprehensions due to the condition. Moreover, caregiving for longer periods can be a risk factor for experiencing burnout. The quality of the caregiver-care and recipient relationship is another very important determinant of the extent and intensity of burnout. Studies have shown that caregivers who were satisfied in their pre-disability relationship with a care recipient report more optimal adjustment than those who lacked  relationship satisfaction.


The 2018 film Beautiful Boy, starring Steve Carell and Timothee Chalamet, depicts a nuanced portrayal of caregiver exhaustion. It poignantly explains the emotional toll on David Sheff (Carell), the father of a young man, Nic (Chalamet) who is struggling with drug addiction. As he witnesses his son’s repeated relapses, David feels a growing sense of helplessness and this cycle of hope and disappointment highlights his decreasing emotional resilience, a clear sign of caregiver burnout. David constantly worries about Nic’s safety, fearing the worst. Due to his entire focus being shifted to Nic and thus unable to maintain balance, David’s relationship with his wife and his other children suffers, highlighting how personal relationships in a caregiver’s life can be affected as they become consumed by their responsibilities. Moreover, David ends up internalizing guilt and responsibility for his son’s addiction, deepening feelings of burnout and frustration. As the movie steers forward, David’s own health and well being decline as he becomes more withdrawn, irritable, and emotionally drained. One of the most emotionally charged aspects of caregiver burnout in the movie is David’s struggle with letting go and facing the heartbreaking realization that, despite his efforts, he could not “fix” Nic, further amplifying burnout.

Caregivers who face excessive burden are more likely to institutionalize dependent family members and caregiver burnout seems to be a primary reason. Burnout can affect not only the ability and quality of life of the caregiver but also of the person within care. Therefore, it is imperative for anyone experiencing burnout to ask for help. Caregiver burnout should be addressed in rehabilitation and  community-based programs. Acceptance of the fact that one needs help is the primary step for a caregiver’s recovery. Reaching out to a healthcare provider or a mental health professional can help deal with the overwhelming emotions accompanied with being a caregiver. Primary caregivers should be encouraged to practice respite care which refers to a temporary break from caregiving services, lasting from a few hours to a few days. Furthermore, participating in caregiver support services like support groups can restore their faith in the process by meeting others coping with similar situations. Reaching out for community support and connecting with people who share similarities has been proven to go a long way. Evidence indicates that caregivers who are able to find a sense of meaning in their circumstances and who enjoy high levels of social support appear particularly resilient. Caregiver stress was increased by problems perceived in social function like lack of companionship, excessive responsibilities and financial problems and decreased when the caregiver had a high sense of psychological well being. One of the most important things one can do as a caregiver is to make time for oneself and engage in some form of self-care. It is possible for individuals experiencing burnout to develop a feeling of resentment towards their loved one within care, hence it is important for individuals to look out for signs of burnout and reach out to therapeutic means well in time.

A successful rehabilitation is need-based. A rehabilitation system should include interventions directed towards the psychological health and social function of the caregiver as well as the physical independence of the patient. Improved financial support and the provision of companionship through community support groups may result in reduced caregiver stress. 



References


  1. Elliott, T. R., & Pezent, G. D. (2008). Family caregivers of older persons in rehabilitation. PubMed Central (PMC). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2597573/

  2. Kumar, R., & Das, A. (2017). Needs of Caregivers of Persons with Mental Illness: Rehabilitation Perspective. ResearchGate. https://www.researchgate.net/publication/331063403_Needs_of_Caregivers_of_Persons_with_Mental_Illness_Rehabilitation_Perspective

  3. Lalljee, A., & Baruah, C. (2022). Fatigue seen in caregivers of the intellectually disabled population. International Journal of Advance Research, Ideas and Innovations in Technology, 17–18. https://www.ijariit.com/manuscripts/v8i5/V8I5-1137.pdf

  4. Gérain, P., & Zech, E. (2019). Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in Psychology, 10. https://doi.org/10.3389/fpsyg.2019.01748




About The Author

Sehej Kaur

Member, PsyCreative Column, Psychology Committee NMIMS


Sehej Kaur is a second year student, currently pursuing B.Sc. Applied Psychology from NMIMS,

Mumbai. All that’s needed to impress her is having a similar music taste as hers and a collection of serene sky and moon pictures. She loves capturing the subtleness of everyday moments. She likes to pen down her thoughts as it helps her gain mental clarity. Being meticulous in her work is of utmost importance to her. She believes that we’re all a work in progress. 

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