Mental health care for the caregivers of persons with disabilities – a crucial issue at any given point of time, but mostly neglected. The COVID-19 pandemic, however, has made it difficult to ignore this public health concern.

On April 30, 2021, Sruti Disability Rights Centre, Kolkata, organized an online interactive session for the caregivers of persons with disabilities in association with Dr. Tanay Maiti, a mental health expert and neuropsychiatrist. Dr. Maiti is Assistant Professor with the Department of Psychiatry, Jagannath Gupta Institute of Medical Sciences & Hospital, Kolkata. This report presents highlights from the April 30 session.

Quote: Dr. Tanay Maiti: “Coping is becoming a challenge. While the problem situation won’t change instantly, our own anxiety can affect our health. There is emotion-focused coping which is desirable, but problem-solving coping should be our aim now.” A number of rarely-talked-about problem situations shared by the participants have been presented along with the solutions suggested by Dr. Maiti. The names of the participants have not been revealed to keep their identities confidential.

Opening remarks

The moderator of the session, Shampa Sengupta, founder of Sruti Disability Rights Centre and Joint Secretary with the National Platform for the Rights of the Disabled, said: “Caregiving isn’t limited to the children with disabilities but is needed also for the elderly. During this perilous situation, special schools for the children with disabilities have been shut for the past one year, and therapy centres are also not functioning. Because of the work-from-home set-up, even the family members are unable to take care of those who need support.”

Dr. Maiti pointed out that the COVID-19 pandemic has posed greater challenges for the persons with disabilities compared to the other sections of society. “The fight isn’t just physical but also psychological. It can be difficult to stay calm under such circumstances when our situation changes every second, every day,” he said. Dr. Maiti was alluding to the suddenness of the lockdown announced in March 2020, work-from-home scenario, and deteriorating health care conditions.

“Coping is becoming a challenge. While the problem situation won’t change instantly, our own anxiety can affect our health. There is emotion-focused coping which is desirable, but problem-solving coping should be our aim now,” he added.

Experience sharing and problem solving

Dealing with dementia during the pandemic: A participant shared that her father-in-law who was 90 years old passed away during the lockdown in 2020. He had memory loss and forgot that he was living in his own house. The pandemic had taken a serious turn and everyone was asked to be at home. He could not comprehend what COVID-19 was and felt restricted in the house. He would demand to go out at odd hours. As caregivers, the participant and her husband tried their best but they would lose their calm at times or raise their voice. When he passed away, it was a huge emotional loss. She wanted to know how caregivers can deal with such a situation where there is a build-up of irritation.

Dr. Maiti’s response: There are limited medical interventions for dementia and it is a progressive condition. The elderly get delirium along with dementia frequently. The symptoms of dementia can come and go away on their own. It is indeed difficult to teach the elderly people how to live life in a new way and adjust to an unknown situation. Stress and clinical depression have become common among the persons with disabilities, including children with disabilities – the prevalence can be as high as 15-20 per cent. Caregivers can refer to websites, new studies, and other resources on the internet to find out how they can make life better for people with dementia and themselves.

Quote: One of the participants said that she is caregiver to her life partner who has OCD and depression. In the initial stages of the pandemic, he completely ignored the threat of COVID-19 infection and asked his friends and family to do the same. But when the number of infections started rising and the pandemic assumed serious proportions, he felt dejected as nobody listened to him. This resulted in extreme anger which the participant had to endure. Challenge of obsessive compulsive disorder (OCD) and depression: One of the participants said that she is caregiver to her life partner who has OCD and depression. In the initial stages of the pandemic, he completely ignored the threat of COVID-19 infection and asked his friends and family to do the same. But when the number of infections started rising and the pandemic assumed serious proportions, he felt dejected as nobody listened to him. This resulted in extreme anger which the participant had to endure. She also felt that her partner suffered from fear which he was not ready to admit. Though he had emotionally shut down, the way he behaved frightened everyone else. As a result, she felt pressured and vulnerable. She tried to take her mind off her worries by reading books and cooking, but wanted to know if she should seek counselling services for herself because her husband would never agree to see a counsellor.

Dr. Maiti’s response: There are three levels at which a solution can be explored. The first is through self-help, which means taking up the activities one is fond of – taking a walk, reading, cooking, or listening to music. The second is where one shares the problem with friends and family members. Communication can help lessen the burden and provide relief. The third level is when the first two mechanisms do not help. This involves seeking professional counselling help. The three steps can work together as well and help solve the problem faster. Of course, there is no magic possible and things may not become just the way they once were. But the advantage of seeing a mental health professional lies in objectivity. The professional will have the skills, knowledge and training experience to guide the caregiver. The three levels are not arranged hierarchically and are equally important. A person may benefit from any of the levels depending on their needs.

Quote: The mother of a young adult with autism shared that both she and her daughter were infected with COVID-19 in October 2020. They had to stay in the same hospital room as there were no nurses who understood the needs of her daughter. She had to play the role of a caregiver in the hospital though she had a high level of infection. She said that parents like her were always anxious about what would happen to their ward if they were infected. Autism, COVID-19 and anxiety: One of the participants, the mother of a young adult with autism, shared that both she and her daughter were infected with COVID-19 in October 2020. They had to stay in the same hospital room as there were no nurses who understood the needs of her daughter. She had to play the role of a caregiver in the hospital though she had a high level of infection. She said that parents like her were always anxious about what would happen to their ward if they were infected. She said that she was in touch with many parents in the same situation as her. Even a cough, cold or stomach ache caused immense anxiety in them. Extreme thoughts crossed their mind frequently about what would happen to their child if they were to be hospitalized. To add to the problem, mental illness had poor acceptance because of social taboos. She asked what should be done if the mother of a child with a disability called her to say that she was feeling breathless.

Dr. Maiti’s response: The thought process of a person cannot be changed in a day. One should remember that the mind and body are connected. It is common to experience panic considering the times one is living in. Stomach pain and fever are often seen as functional or psychogenic pain arising from anxiety. This is seen among both adults and children, with or without a disability. A panic attack can last from 10 minutes to four hours. Though the experience during this period is often horrific and unbearable, proper medicines can ease and remit the distress faster. One may also become scared because of lack of knowledge about a virus such as COVID-19. It is always a good option to call up one’s doctor for advice. One can also reduce the day-to-day tension by cutting down on social media, TV, conversations around COVID-19, and drawing hypotheses based on an incomplete understanding about the virus. One should follow only the information provided by the government on the virus and pandemic.

Quote: The mother of a non-verbal child with a severe level of autism said that many activities had come to a standstill since the past year. It was challenging to make the child understand why this was the case and to convince him to stay at home. Even if he were to be taken out, he would not be able to wear a mask and follow social distancing rules. It was difficult for the child to follow online instructions. Prescribing medicines online during the lockdown: A counsellor among the participants asked if medicines should be prescribed via online counselling. She had been taking numerous online sessions with her patients during the lockdown, and felt that many required medicines and not just tele-counselling.

Dr. Maiti’s response: With COVID-19 there seems to be an entirely new world. People are learning new ways of carrying out their work. It is completely alright to prescribe medicines online to those in need. This has proven to be helpful and he (Dr. Maiti) too has had to do so because face-to-face consultations are not permitted at this stage.

Vaccine fears: A participant shared that her husband seemed to have become a victim of the COVID-19 infodemic. He was convinced about the negative effects of the COVID-19 vaccine and refused to be vaccinated. He had stopped the participant too from getting vaccinated. She asked how she could convince her husband to get vaccinated.

Dr. Maiti’s response: No one knows what the effect of taking the vaccine will be two years from now. The vaccination is evidence-based because that is the nature of science, and current evidence shows that the vaccination against COVID-19 is beneficial. The photographs of those who have taken the vaccine may give out a positive message and convince the participant’s husband to change his stand (Dr. Maiti shared he too had been vaccinated as a frontline worker).

Non-verbal child with severe level of autism: The mother of a non-verbal child with a severe level of autism said that many activities had come to a standstill since the past year. It was challenging to make the child understand why this was the case and to convince him to stay at home. Even if he were to be taken out, he would not be able to wear a mask and follow social distancing rules. It was difficult for the child to follow online instructions.

Dr. Maiti’s response: The situation is indeed difficult to deal with, but play therapy like drawing may be used to communicate to the child why he needs to stay at home. It is a tiring job for a caregiver, but safety is paramount. The services of an online therapist may be of help. The caregiver could also network with the community groups that deal with autism and find out how to help the child.

Parting words

The moderator closed the session with the message that finding solutions to the challenges thrown up by the COVID-19 pandemic was crucial. The pandemic had affected everyone differently but tackling it should be a joint effort. She said that the formation of support groups to help each other be in touch, and share experiences and solutions was the way forward. This web-discussion could be seen as the beginning of such a process.

Main graphic credit: Pawan Dhall