By NEHA KARAMCHANDANI

Patio lunch. Gym. Pool. Sauna. Homemade Indian dinner. This is how Reena NeGandhi remembers the day before her father ended his life. 

“We had an amazing day at his place on the terrace. We had lunch. We went to the gym, pool and sauna. Dad made dinner – rajma chawal (kidney beans with rice),” said NeGandhi during a phone interview from her Mumbai residence, recalling the day.

October 2, 2017.

“We went to bed and he committed suicide the same night. I guess his medicines weren’t right and his mind went bad.

“When the police arrived at the scene and told me that my father died, I felt like crap. I wished I had stayed up all night and worked, so I could have prevented it from happening.” 

NeGandhi’s 72-year-old father, Narendra NeGandhi, had jumped off the balcony of his 18-storey high condo apartment in Thornhill, Ontario, giving up on a 10-year battle with depression.

According to the Canadian Mental Health Association (cmha) website, in any given year, one in five people in Canada will personally experience a mental health problem or illness. It also states mental illness indirectly affects all Canadians at some point through a family member, friend or a colleague. However, the impact it has on family members is often left unspoken, especially in the South Asian community.

“A family is a group of people living together who are connected by emotional ties and have many common objectives,” said Latchman Narain, a psychotherapist at the Anger Management Centre of Toronto. “If there is one member with a mental illness, then it impacts the family because sometimes they lose faith in the system. They often give up or don’t put in enough effort to help the person with the mental health issue. Quite simply, they say it won’t work or it’s not working,” added Narain, who has been practising psychotherapy for the past 18 years.

“The family thinks the person’s mental illness is a biological problem, and it’s not responding to any form of help. Family members are usually encouraged to share their feelings with each other but it can become challenging for them to find the time to spend with their loved one who has a mental illness. They also have to deal with stigma, shame and blame from other people in the society.”

In 2008, Narendra NeGandhi had suffered a financial blow to his business which left him distraught.

“I had just taken over his business and there were lots of changes as I restructured it,” explains Reena NeGandhi, owner of NeGandhi Marketing & Consulting Pvt. Ltd. “He got worried about his money during the recession and this was the start to his depression.”

During his struggle with depression, he attempted suicide multiple times.

“In 2008, he wrote a letter at night and went in the garage to turn on the car to end his life, but my mom found him,” she said. “At the time, the treatment he was receiving in Canada was not helping him, so my mom brought him to India to see a doctor. Following that, he was still suffering from depression and every year, my mom would bring him to India.”

In 2012, NeGandhi’s mother passed away and by August of that year, Narendra NeGandhi’s depression had worsened.

The World Health Organization defines mental health as “a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to contribute to her or his community”.

This is different from mental illness, which is a diagnosed condition. Each of them falls on spectrums that are interrelated.

However, mental health is still considered a taboo subject in the South Asian community, often leaving many families uncomfortable about seeking help. Many families live in denial – unwilling to accept that a member of their family has a mental illness. But numbers continue to show that mental illness is common in society.

The cmha website states approximately eight per cent of adults will experience major depression at some point in their lives. This, and other mental illnesses, are usually caused by many factors – genetic, biological, personality and environmental.

People have initiated campaigns like #BellLet’sTalk, #338conversations and Not Myself Today to support mental health across Canada. These are supposed to break the silence, help fight the stigma and offer safe spaces for those suffering from a mental illness including families to come forward and share their stories.

Similarly, Mental Illness Awareness Week (miaw) was created as an annual national public education campaign to help open the eyes of Canadians to the reality of mental illness. It was established in 1992 by the Canadian Psychiatric Association and is now coordinated by the Canadian Alliance on Mental Illness and Mental Health (camimh), as noted on its website. Over the years, many organizations across Canada have supported this campaign.

During the week (September 30 to October 6 this year), a national outreach campaign – Faces of Mental Illness – also takes place. It features the stories of Canadians living in recovery from mental illness. Thousands of pieces of materials featuring the Faces are shared with hundreds of organizations to raise awareness and end the stigma associated with mental illness.

Despite the effort to end the stigma around mental health, South Asian families are still struggling with understanding mental health, finding the appropriate resources and offering adequate help to their loved ones.

Dr. Gursharan Virdee, a psychologist and researcher at the Centre for Addiction and Mental Health (camh) said although campaigns are important to fight stigma, there are still some gaps in the system, especially for South Asians families.  

“Some of them don’t have access or are unaware of how to navigate the system,” she says. “Some don’t know English, are limited in their resources and can’t find the support for their loved ones or for themselves.”

Virdee, who provides psychological treatment to youth in the community in English and Punjabi, received her doctoral degree in 2016 from City University in London, United Kingdom. She is active in the community and says things have changed, but there is a long way to go.

“There is the Punjabi Community Health Services which uses a culturally-driven model of care. They connect with the family because they believe that the families also require healing including one-to-one therapy. They also provide access to information in different languages, but it’s sometimes difficult for families to even learn about these resources or receive the right services at the right time,” Virdee added.

South Asians are also drawn to the immigrant narrative because of its connection to their social values.

“Immigrant communities who have sacrificed a lot to come to Canada – taken a lower level job, for instance – to create a life for their children, often feel the need to do well. If their child or any member of the family develops a form of mental illness, they struggle with this. They feel they need to stand out and not be a disappointment, so they live in denial. They don’t accept the illness, or they hide it, which affects not only them but the patient as well,” said Virdee.

Currently working on the Roshni project, a three-step process of creating culturally driven mental health supports and resources for young South Asian women, Virdee notes that medications also pose a challenge for families.

“We know a balance of psychological help and medications is the key to recovery. However, sometimes it can take time to find the right balance and it’s often challenging for clients during this process. I find with my South Asian clients, there is sometimes a resistance towards medication. It’s a balance. If you have a chronic mental health illness, you do require medication over time. We need to treat mental health like physical health. If our head hurts, we go to the doctor. It should be the same way for mental health.”

She says education is key for families. Understanding what mental health is, the impact on the individual and believing that recovery is possible. Family members benefit from education as they begin to develop an acceptance of the illness (including behaviour changes) and establish coping strategies.

“The family system’s theoretical perspective holds that individuals are best understood through assessing the interactions between and among family members. The development and behaviour of one family member is inextricably interconnected with others in the family.” (Gerald Corey’s Theory and Practice of Counselling and Psychotherapy, ninth Edition, 2012). 

In 2006, Lina Dhingra’s family was hit by tragedy. After five psychotic episodes, Dhingra’s father, Ved Dhingra, who was 64-years-old at the time, had claimed the life of his wife, Kamlesh Dhingra. He had been diagnosed with schizophrenia in 1985, which was later confirmed to be schizoaffective disorder by the psychiatrists and courts in 2009. 

Dhingra’s father’s mental illness predates 25 years when information on mental health matters was scarce. After the second psychotic episode, which included self-inflicted wounds, Dhingra said, she started to educate herself on his condition and the varying medications he was administered.

“Self-inflicted wounds – to do something like that is very serious and takes a lot of strength to do it. It showed suicidal like tendencies whereas earlier it was verbal ideation, command voices or idle chatter. This act of self-harm was extremely worrying and of grave concern,” added Dhingra, founder of KarmaPRO Entertainment Group, a company specializing in celebrity events, publicity campaigns and film production.

“The episode prompted me to dig deeper. I would research online about the medications he was given and then consult with other psychiatrists and pharmacists. I needed to learn more, and it was important to get a second and third opinion. My faith in leaving it in the hands of the treating psychiatrist diminished as I saw my father’s health worsening,” said Dhingra.

She regularly called the psychiatrist’s office and asked questions.

“I am reading about this medication and it has a glaring side effect. How do we prevent a suicide from happening? How is it related to his other health issues like diabetes and high blood pressure? What about the timing of administration of his insulin and risperidone dosage? I admit I was considered a bit of a squeaky wheel... I found that a particular treating psychiatrist was defensive. He was not open to families coming in during sessions or questioning what was being given,” said Dhingra.

Her father visited his psychiatrist once every six weeks for 20 minutes. As each episode occurred, Dhingra found herself questioning the current system. Every hospital admission suggested a different type of medication and dosage amount. There was never a proper clinical evaluation.

“What I can say with conviction is that my father should have never been given the cocktail of meds (Paxil, Trazedone and Seroquel) that he was given leading up to the tragedy. It didn’t suit him well and he was over-medicated most of the time. He was like a walking zombie,” said Dhingra. “The psychiatrist was prescribing him medication without looking at the side effects and with very little post follow-up to see how he was responding to the suggested dosage. The medication that he was on didn’t stabilize him, in fact, it worsened him for the self-harm to continue. Most often, psychiatrists give you medications and leave it to the patient and family to cope.”

 

For Dhingra, it was a constant uphill battle.

Following the tragedy, her father was incarcerated for three years at the Central East Correctional Centre in Lindsay, Ontario. She strongly advocated in courts that he was not a prisoner, rather a patient who needs adequate treatment for his mental illness.

“Prison hardly had access to psychiatrists and that is why I fought to get him out of there. There was so much abuse in the ward he was placed in,” added Dhingra, who previously sat on the camh advisory board in 2009.

Years after trial proceedings, Dhingra was successful at getting her father to Ontario Shores (Centre for Mental Health Sciences) where it was like a rehabilitation setting with an in-patient program, so doctors were on site. The patients could learn life skills, ways to identify with their illness and how it can take over their lives. Her father would see a psychiatrist once a week and they had a team of five people to provide care from therapists and psychologists to nurses and life coaches, says Dhingra.

Currently, she has been able to cut her father’s medication by 75 per cent to a low dosage of Risperidone. He visits his geriatric psychiatrist every six months at camh and general physician once a month.

“I don’t take one psychiatrist’s opinion at face value. I research about the medication and understand all aspects even when combined with other medications. The timing of medication administration is also important. Find your trusted pharmacist, and make that person your best friend.

“No matter what, we must be supportive, open and embrace the situation for that individual. Imagine how the person who is suffering inside feels. This isn’t a one-man struggle. It can be a family struggle. Sometimes we close our eyes to it due to societal pressure or just our own insecurities. Don’t fight, don’t blame and don’t judge each other as some families do. If there is a caretaker in the family, it’s okay to support the one coping while taking care of ourselves. Every day can vary from good to bad if mismanaged. In our case, we’ve reached stabilization with my father and he’s doing fantastic now,” said Dhingra with a smile. “Not a day passes when I don’t think of my late mother. It’s because of her – she has given me the strength to continue the fight for mentally ill patients.”

Dhingra continues to do press interviews and speak about mental illness at public engagements.

NeGandhi shares Dhingra’s views and approach. Education can lead to exceptional care and treatment for your loved ones, she believes.

“Since I had moved to India just before my mom’s passing, I picked up my dad from Canada every year to bring him to India for treatment. I took it upon myself to take care of my father at that time. I researched doctors in Mumbai and ensured he was seeing the top professionals,” she said.

In India, NeGandhi’s father had access to his doctor at least once a week. The father-daughter duo also used to hit the streets of Mumbai and party all night. NeGandhi added that dance was like a therapy for her father.

“It’s not just the treatment, it’s the great care you get here. That is very much needed for people with depression. He had 24-hour house-help and a driver who were like his social therapists,” said NeGandhi.  “He would dance every day, drink coconut water daily, go to the gym with a personal trainer. In Canada, it’s hard to get an appointment with a psychiatrist. He was supposed to see his psychiatrist once every two months for 20 minutes in Canada, but that didn’t happen. The medications he was taking were also not right – one mg of Lopez, but it should have been two.”

Her father’s psychiatric appointment was postponed for a month. She wasn’t initially informed of the change but attempted to move it to October. 3. But it was too late, her father took his life that morning.

To minimize the impact on the family and patient, communication between members is necessary.

“Communication including helping set goals, cooperating with each other, working with the medical system and professionals and taking a team approach between family and other professionals will reduce the impact and may alleviate stresses on the family,” says Narain.

“No one could tell that he had a mental illness,” says NeGandhi. “People loved my dad. He was a happy person,” said NeGandhi.

Other South Asian families like Dhingra’s may have to experience shame, blame and gossip.

“Our community was condemning it (the mental illness). Our extended family, too. People were fearful of an outbreak or witnessing odd behaviour, so they would tell my father to sit in the furthest back rows during bhajans. It was an alienating experience,” said Dhingra. 

“I think families need to focus on what is right in their unit” explains Virdee. “They should keep focus on the needs of their family. In the South Asian community particularly, even if there are good things happening in your life, people will still talk, so let us just accept that will happen. If you have social support, surround yourself with people who will lift you up. It may be a chosen family member, or a colleague at work. Never mind the gossip and just find a way to accept it. We need to normalize conversations around mental health.”

While NeGandhi continues to mourn the loss of her father, she suggests to others who have a similar struggle that they remember to stand up for the one they love.

“For me, I knew how to get my dad better. It was just a part of life for me. We needed each other the most. My dad was my number one man. Spend time with your loved one. For me, it was through dancing with my dad. To me and for many, he will always be the Amitabh Bachchan of Toronto. I love you, dad!”

MENTAL HEALTH WARNING SIGNS

• Changes in regular behaviour
• Changes in eating and sleeping patterns
• Changes in level of interaction with others (family, friends)
• Changes in level of interest in hobbies
• Poor hygiene
• Not going to school or work
• Mood swings (don’t rely on this one aspect to determine mental health).

Son’s suicide: A father is still seeking answers

Rakesh Tiwari received a phone call from Brampton Civic Hospital on June 26, 2014, and his life changed forever.

His 20-year-old son Prashant had ended his life after losing a battle to what Tiwari later learned was delusional disorder – a symptom of psychosis, when a person has trouble recognizing reality.

“The doctor said my son is no more. He hanged himself in the hospital bathroom. I was shocked. I was screaming. I was crying. I was planning to see him in the evening, but I received a call while I was getting ready to go there,” said Tiwari, host and producer of Apna Radio on Canadian Multicultural Radio and chief editor of Hindi Times.

“I was told to come to the hospital, but they did not let me see his body. I thought he was still alive. I last saw my son on June 24, when Prashant asked me to bring his shaving cream and other personal items. The next day, his friends went to visit him.”

Tiwari was able to view his son’s body at the crematorium after demanding an autopsy and an explanation from the hospital. Ten days later, the family was able to put him to rest.

Tiwari replays his son’s final days. On June 16, while hosting his radio program, he received a text message from Prashant saying, “Dad, I need to talk to you”. He immediately returned home and found cuts on Prashant’s body. He had stabbed himself seven times with a knife, telling his father, “I will never hurt anybody or myself, but I did this. I need your help.”

Tiwari rushed his son to the hospital where he was assured that his child would be provided with adequate care and attention. Prashant was supposed to be checked on every 15 minutes, but on the day of his death, he was unattended to for three hours.

He had used his bathrobe and a chair that was left in the hospital washroom to hang himself from a ceiling grate.

Suicide accounts for 24 per cent of all deaths among 15 to 24-year olds according to the Canadian Mental Health Association (cmha) website. Ultimately, it’s a struggle for parents and families who have children facing a mental health issue, especially in the South Asian community.

According to an investigative report by ctv’s W5 in 2014, there have been approximately 300 deaths over ten years involving suicidal patients who were supposed to be on strict watch. Ninety-eight of those cases occurred in Ontario.

Tiwari added that he made several attempts to learn about Prashant’s health, but the hospital staff failed to provide him with information.

“I remember a counsellor saying, ‘The doctor will not meet you. The doctor is too busy. He will meet you when your son is released.’ They were giving him tests and sedatives. All those things were true, but Prashant was not doing as well as they were thinking.”

Four years later, he still struggles with understanding what type of illness Prashant really had because of the lack of information he received. 

“Families shouldn’t be ignored as they are often going through challenges too,” says Tiwari, who believes the world is a family where everyone can help each other.

He remembers his son always holding himself responsible for everything happening to him or in his surroundings. When a young couple committed suicide at his school in 2012, Prashant said, “he did not do enough” to help prevent the tragedy.

As a father, Tiwari said he always talked to Prashant, counselled and communicated with him. But these incidents “affected his psyche”.

Some families are also faced with challenges pertaining to divorce having a negative impact on children, a situation common to Rakesh’s family. Although a direct correlation between Prashant’s illness and his parents’ divorce can’t be made, Tiwari says, “I think today’s generation is better at understanding this problem”.

To create awareness, he has started a website, Mental Health for Us – a platform where questions can be asked and answered.

“Don’t be afraid. If you don’t talk about it, you are covering it up. Be proactive and involve a family member. You should accept the issue, talk about it and look for solutions. Becoming quiet and thinking what others would say won’t help. I never imagined this would happen to my family, so take care of yourself.”