Caregiver Burden: One With Mental Illness is Not The Only Sufferer

by | Jun 29, 2018

As much as it breaks my heart to see how majority of people with severe mental illnesses are abandoned at different mental health institutions by their families, it also makes me think, “Why would anyone do this to their family member? What makes them take such a difficult decision?”
As I interacted more with caregivers of people suffering from mental illness, I realized that the main problem is what we call, ‘The caregiver burden’, an ill-addressed issue in our healthcare system.

Because the ratio of mental health professionals to patients is really low, major responsibility of an individual’s care falls on the family. As a result, such families experience a great amount of caregiver burden, which usually, has a negative impact on both the caregivers and the patients.

“Care-giving is defined as the act of providing unpaid assistance and support to family members or acquaintances with physical, psychological or developmental needs. Caring for others generally takes three forms: instrumental caring, emotional caring, and informational caring”
Mohammed, George, & Priya, 2015

Care-giving is vital in recovery process of an individual with mental illness. However, due to inadequate resources and support system, caregivers lack training and preparation to deal with their loved ones. Those with chronic symptoms require extra and long-term attention. It can be stressful, and if one is not prepared to deal with such stress, then most likely it will not only impact their own mental health but also worsen the patient’s condition.

Often, caregivers take their frustration out on the patient because they believe that patient is the main cause of their misery. As a result, patient feels ignored and hurt which builds up their stress level, worsening their condition. When relapses occur, they occur with more intensity than the previous ones.

In the last 8 months, there have been many instances at work (Nagpur Mental Asylum) where caregivers have spoken about their helplessness. I clearly remember a comment from one of them (whose wife is suffering from schizophrenia) during my interaction with him:
“Madam badi dikkat hai. Sab bachche humare bade ho gaye hain aur ghar ka sara kaam wo khud karte hai. Wo apni maa ko bolte hain ki tu ghar se nikal ja. Kuch kaam nahi karti hai. Mai to pati hu iska, mujhe malum hai ki kya hua hai isko. Par ab bachcho ko kaise samjhayein.”

When the stress becomes intolerable, one sees abandoning the patient as a better option than taking the burden of caring and suffering along with the patient.
“Isko yahin rakh lo. Hum isko ghar nahi le ja sakte, isko yahin par hamesha ke liye admit kar lo.”
– Caregiver of another individual with mental disorder

Isko kuch nahi samajhta. Kisi ke bhi sath chali jati hai. Jawan ladki hai, kahi kuch unch-nich ho gayi to kya karenge? Isiliye yaha chod ke jate hain. Kam se kam surakshit to rahegi.”
– Caregiver of a daughter

A lot of them lose hope and faith in the recovery process. Quite a few let go of their dreams.
“Pehle sab kaam bahut achche se karti thi, par ab kuch nahi karti hai. Dheere-dheere iski halat aur kharab hoti ja rahi hai. Pata nahi kyu – ab to khud se khadi bhi nahi reh sakti. Gir jaati hai. Ek baar bathroom mein gir gayi thi to sir pe chot lag gayi. Bahut khoon nikla. Kya hoga iska!”
– Mother of a daughter with schizophrenia

“Humne socha the ki retirement ke baad desh-videsh ghumenge apni shrimati ji ke sath. Isiliye bahut pehle se thoda-thoda paisa RD me daal rahe the. Par ab bete ke sath aisa ho gaya. Pehle bahut achcha tha. Pata nahi ye kaise hua. Ab to kharche itne badh gaye hain ki dawai-goli aur sahi treatment ke peeche hum arthik pareshani mein hain. Ghar ke saare naukar-chakar nikaal diye hain. Saare kaam khud kar rahe hain is umar mein.”
– Father of a young patient

Caregivers are more vulnerable to depression and often experience constant stress, tiredness, frustration, and anger. During my observation week in psychiatric department, there was a case where a mother and her son, both had mental illnesses. Both of them were complaining about each other’s bizarre behaviors. Later, I found out that the son was suffering from psychosis and his mother was the only one to take care of him. Over the years, she also developed symptoms of psychosis and was diagnosed with depression as well. Since she didn’t have anyone to fall back on, it affected her negatively.

In our culture, usually women are primary caregivers in a family and are expected to be actively involved in the related activities. They carry a greater burden of care-giving, as compared to men in the family. There are other factors associated with this burden, such as lack of social support, limited resources and high self-perceived stigma.

As a consequence of care-giving, people often face issues such as disruption in their domestic routine, financial challenges, difficulties in managing work, reduced social activities, lesser motivation in life and high level of anxiety. There is a need to assess this burden on regular basis and provide appropriate resources to support caregivers. Mental health professionals need to be trained on assessing caregivers’ needs and burden effectively to tackle this issue. As we move towards a better healthcare system, identifying and addressing this burden can have a positive impact on the recovery and care of patients.

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