Caregivers can face their own physical, emotional and financial struggles, but conversations around mental health largely ignore their plight.

The burden of caregiving Indian caregivers on the battles they fight every dayImage for representation. Photo: Raja stills/Picxy
Delve Health Friday, June 07, 2019 - 14:43

“I can’t tell you how many times I have wished my mother was no more,” says Garima*. “Don’t get me wrong – I do enjoy her company too. But all these years have taken a toll…”

Mumbai-based Garima (54) is the primary caregiver of her 90-year-old mother, who suffers from anxiety and dementia, a psychiatric disorder which affects cognitive functioning like reasoning and memory, and hinders one’s ability to perform day to day tasks. And though she is tired of looking after her mother, the thought of losing her terrifies Garima too. She came close in early January which she describes as the scariest day of her life.

Garima’s mother left the house in the middle of the night on that fateful day, believing someone was beating her husband outside.

Her husband died eight years ago.

“Thankfully, the security guard found her and brought her back. I went downstairs and just held her… she was shaking like a leaf. I could have lost my mother forever that day,” says Garima with a shudder. She and her mother live in the same apartment complex in different flats.

But Garima’s mother isn’t always disoriented and anxious. “She is still active - she enjoys good food, getting her hair coloured, and going to cafes with me for our Sunday coffee. But she needs a routine, or she gets very anxious,” says Garima. “There’s also no room for bad news in the relationship. For example, I am down with jaundice right now. But I can’t tell my mother that because it will make her very anxious, which means more work for me.”

There are thousands like Garima across India. While the conversation around mental health has come to include more psychiatric disorders like dementia, schizophrenia, bipolar disorder, and more common issues like anxiety and depression, the impact of caregiving on carers isn’t given enough attention.

TNM spoke to four caregivers of those with aggravated mental illnesses, and psychiatric disorders, as well as mental health practitioners to discuss the major challenges and why self-care is important.

Caregivers’ burden

Garima’s mother was first diagnosed after her husband passed away. Garima noticed that her mother was repeating herself a lot. A psychiatrist then prescribed medication for Alzheimer’s, a type of degenerative dementia which affects memory and thinking functions. But on January 5, after the incident, Garima consulted another specialist who also diagnosed her with severe anxiety – she was repeating herself for the fear of forgetting.

“I am an only child, don’t have a spouse or kids. I am the only anchor that my mother has – most of her siblings and friends are dead. In the last three years, while my relationship with my mother has improved, caregiving is a lot to deal with. I’m physically and mentally exhausted,” Garima says.

Caregiver burden is the strain borne by one who looks after the needs of someone who is chronically ill or disabled. This stress can take many forms – psychological, emotional, and financial to name a few. Studies have found significant incidence of anxiety and depression in caregivers of those with disorders such as dementia. Apart from mental and emotional burden of caregiving, there are also physical health complications that can develop, like sleeping issues and high blood pressure.

Dr Aarti Jagannathan, an associate professor at the Department of Psychiatric Social Work at National Institute of Mental Health and Neurosciences (NIMHANS) in Bengaluru, has closely studied caregivers looking after those with schizophrenia.

“Caregivers’ first concern is for the patient to become well. Second, the patient should be able to do day to day jobs and be functional. They also want to know how to take care of their own health and emotions. They want social support and acceptance. They want to learn how to handle the patient in crisis situations, like when he/she is unreasonable or becomes violent,” Dr Aarti explains.

“In cases where the caregiver is a parent or older relative or spouse, another worry they have is who will care for the patient after them,” she adds.

The level of disability that the patient has also determines their dependence on the caregiver. “There are four criteria for this – the patient’s level of communication, social interaction, work life and ability to do their daily activities. If one is not dependent for some of these on the caregiver, it can reduce the burden,” Dr Aarti says.

Garima has hired two nurses to look after her mother, as well as house help to ease her burden. However, this happened after a tragic revelation of abuse and neglect that her mother was facing from another help that they had trusted. 

Three months ago, Garima had to fire a woman who had looked after her mother for 30 years because she overdosed her mother. Garima later found out that she was physically abusing her mother too. “I was worried because my mother was used to her. But my mother has actually become calmer, her health has improved, and I started noticing that the marks on her arms – probably from the abuse – had reduced,” Garima says. “Sometimes, as caregivers, we are very afraid of making changes because we fear that the patient may not accept it. But it’s important to do what’s good and right for them,” she adds.

Unlike Garima, however, Ramana Rajagopaul did not hire help when his wife, Urmeela, became completely dependent on him in 1998 after she suffered multiple cardiac and cerebral infarcts (a localised area where the tissue is dead because of failure of blood supply). She developed dementia as a result.

“She withdrew from life itself. And till she died 10 years ago at the age of 65, you could say that for all practical purposes, we remained joined at the hip. She was dependent on me for making conversation too… She could not remember names, faces and places,” 76-year-old Ramana recalls.

Ramana’s life changed drastically – he left his lucrative job in Tirupur, stopped meeting his friends or taking weekend trips. “My friends didn’t understand why I wouldn’t hire help to look after her so that I could have time to myself. But she wouldn’t have done it if our roles were reversed,” he tells TNM.

Impact on emotional and mental health

Being diagnosed with a psychiatric disorder or mental illness can take a toll on personal relationships too. Ramana and his wife had known each other for eight years before their 40-year marriage. Apart from the loss of companionship, they had to abandon retirement plans of travelling the world and then settling down at a small farm house. “It was no big deal for her, but, for me, it was a big disappointment then,” he admits.

For Udhay*, whose 61-year-old wife Akhila* was diagnosed with schizophrenia in 2007, it changed their relationship and caused him to become depressed, narrates their daughter Ramya*.

A 30-year-old based in Bengaluru, Ramya is now her parents’ primary caregiver.  However, before she moved in with them four years ago, Udhay was Akhila’s primary caregiver. And though the diagnosis happened in 2007, Akhila had been exhibiting symptoms for over a decade prior.

“She would hear voices, say that god is talking to her. At one point, she stopped eating properly and taking care of herself. And because my father was the primary caregiver, a lot of her suspicions and outbursts were directed towards him,” Ramya tells TNM.

In 2007, when Ramya was still in college, and her parents in Chennai, Akhila had to be tricked by her relatives to be admitted into a hospital - they said they were taking her away from Udhay as she was unhappy with him.

After brief hospitalisation, Akhila returned home. Things seemed manageable for a while, but Akhila suffered a relapse in 2015-16, and things got really bad. “At one point, she believed that my father was having an affair with a stranger, who did not know the family at all. That’s when my sister and I finally decided to take things into our hands – we got our mother on medication again,” Ramya says.

However, because Udhay was the primary caregiver for a long time, his mental health took a major hit. A few years ago, he left home to attempt suicide, and his family were unable to find him for several days.

Ramya shifted to Bengaluru in 2016 with her parents. However, because her father had taken her mother’s pills to make an attempt on his life, they were no longer allowed access to the medication. “I would have to come back home from work by a certain time every evening to give them the medication… which meant that I couldn’t have a life,” Ramya says.

Helplessness and confusion

How can a caregiver cope with helplessness when the patient is not functional or refuses to cooperate? This is something that Bengaluru-based Param, father to a 24-year-old Sangeetha, who was diagnosed with Bipolar Disorder (BD) in 2014, had to struggle with.

When Sangeetha was 11, Param was diagnosed with Chronic Myeloid Leukaemia. Though he underwent a bone marrow transplant in 2006 and has been better ever since, he believes that those years took a heavy toll on his daughter. Though Sangeetha was only a child herself, she showed immense strength when he was sick. “She did not want to show what was happening with her because she knew the family was dealing with my sickness. There were times when she hinted that she was facing bullying at school but we brushed it off thinking they must be usual tiffs with her friends. If she hurt herself, she hid it well,” he tells TNM.

The mirage shattered in 2014 when one day, Sangeetha said that she wanted to take her life. Param knew something was horribly wrong.

He packed up his job in Gujarat and shifted to Bengaluru. Sangeetha started therapy and got on medication, but things were not easy. “She was clinically depressed and was not functional. There were days when she would not come out of her room, and days where she would get really volatile and even throw things in one of her tempers. I have a younger daughter too, and we wanted to ensure that she isn’t affected,” Param says. “Those were dark days… I used to go on my evening walks and let my emotions flow.”

There were times where there seemed to be very little that Param and his wife could do to help Sangeetha. It particularly had an impact on Sangeetha’s mother, who would break down, which made Sangeetha feel guilty.

Param also took a year-and-a-half-long break from his job a managerial role in the pharmaceutical industry to be a full-time caregiver. He started working with Sangeetha’s psychiatrist and also armed himself with information about BD. “Sangeetha has a long way to go, but we are in a better place than we were four years ago,” Param says.

Perceived and social stigma

When Ramya’s father disappeared from home leaving only a suicide note, they worked with the police and involved some trusted family and friends to look for him. However, Ramya did not post on social media and she did not tell anyone else.

“You start thinking about what you are going to tell your friends. What would my sister tell her colleagues? If you tell this story – that your father wanted to take his life and is missing – then that’s going to be the story people will always associate with you. We didn’t put up Facebook statuses saying, he’s missing, help us find him, because if he comes back, he will have to live with it for the rest of his life,” Ramya states.

“Even now, my father would rather not tell his boss and colleagues that he is going for therapy. He'd rather say that it’s a health check-up or that he has to go for a family function,” she adds.

The advocacy around mental health is still far from eradicating the stigma around it. While neither Dr Aarti nor Dr R Thara of Chennai-based Schizophrenia Research Foundation (SCARF) deny this, they add that the stigma can also be a perceived one. “[The caregiver] may avoid inviting friends and relatives to their homes, avoid social events and so on, owing to a sense of shame or failure,” Dr Thara says.

Most caregivers TNM spoke to did not complain of facing outright hostility, but withdrew because of lack of understanding in their social circles. For instance, many of Param’s friends do not understand what his daughter is going through. “They question how she can be sad or dysfunctional when she had posted something ‘normal’ on Facebook just hours ago,” he says.

Financial burden

A major aspect that can add to caregivers’ burden is their financial situation. All of the caregivers that TNM spoke to are middle class and above, but the stress is significantly more on those who are not economically well placed.

“Money makes a lot of things easier. For instance, if the resources permitted, we could have made my parents to live in different houses because they don’t really get along. Or hire someone to monitor them,” Ramya says. “The good thing is that at a place like NIMHANS, therapy is affordable. If my parents feel they are a financial burden on their daughter, it would impact their mental health.”

Dr Aarti points out there are some income tax exemptions that one can avail if they are primary caregivers of a person with disabilities, including mental illness. They can also look out for schemes such Aswasakiranam in Kerala, where there is a provision for a monthly allowance of Rs 600 for caregivers who are unable to be employed. However, this sum is only limited to caregivers of those who are bed-ridden due to their mental or physical condition.

Research has argued for caregiving to be regarded as a public health issue, especially because informal caregivers like families play a huge role by taking the load of public healthcare institutions. However, in India, disability is a state subject. “Health and welfare is the last priority of governments,” Dr Aarti states.

Acceptance, self-care and balance

Research has shown high incidence of caregiver burnout characterised by feelings of alienation, anxiety, sadness, loss of interest in leisure activities as well as emotional and physical exhaustion.They may also experience their own health issues.

“It’s very simple – if I am low, I cannot bring anyone else up. You can’t pour from an empty cup,” Dr Aarti points out.

Tanvi Mallya, founder of Tanvi Mallya's ElderCare Services in Mumbai, has found that caregivers are often unable to maintain a balance between caring for the patient and living their own lives. “Caregiving ends up becoming a full-time job, eventually affecting the caregiver's mental and emotional well-being,” she explains.

This is not only detrimental for the caregiver, but also the patient, as caregivers may experience hostility, indifference and helplessness, which could lead to neglect and abuse as well. Experts stress on gaining realistic acceptance of the patient’s condition, and how much a caregiver can do.

According to Tanvi, “Respite from round the clock care is essential. A household or family in which one person serves as the primary caregiver must be organised enough to give that person some ‘down time’ regularly. The caregiver should open up to the idea of outsourcing some caregiver duties, which can be tough as caregivers often find it difficult to relinquish control.”

Family caregiver groups are also shedding the word “burden,” which brings negative connotations to caregiving.

“They see the diagnosis as a crisis, and as in any crisis, they have to adapt to deal with it. There is no point blaming the patient, who cannot change,” Dr Aarti says.

This is what ended up working for Ramana. Once he viewed caregiving as a responsibility - something that had to be done, rather than something that was thrust upon him - he could accept what happened to his wife without expectations.

Caregivers could also greatly benefit from therapy, experts say, though the intervention should be need based. “Talking about it helps, however, each family member should ideally be allowed the space to talk when they feel ready,” Tanvi says.

Different things work for different people. Param and Ramana turned to meditation and yoga. Param also made friends with a couple who came for therapy, where the woman had BD. Talking to them helped because they understood what his family was going through, he says.

Ramya and Garima realised that routines work for their mothers, so they try sticking to those.

“I come back from work in the evening and spend time with her till 9 pm. After that, I socialise, I party. She knows that Fridays are movie nights, so she doesn’t bug me then. And if things get too much, I take a two-day trip to clear my mind,” Garima says. And while she has had to cut back on travelling, which she loved, she has an active support system of friends who she speaks to openly.

Ramya also informs her mother of her plans well in advance. She also began planning their medication on a weekly basis using individual pill boxes so her parents would not have access to the pills in bulk, one of the reasons she couldn’t have a social life earlier.

“I do get anxious when I am away for a longer period sometimes. But I keep in touch with my parents on the phone. If something does happen when I am away, unless it’s serious, I tell them that we’ll deal with it once I come back,” she says.

“It took me some time but I realised that my life is my own, and no one else is going to live it for me,” she adds.

*Names changed