My Father’s Battle With Depression (And Our Battle As Caregivers)
My father was diagnosed with acute depression — chronic or clinical depression in medical terms — in February. It turned out that he had been suffering from the condition for at least a year before that. He never felt it. And there were no visible signs either. But it was lying in the subterranean, slowly yet surely eating into his life.
It was in September (2014) when his physical health started deteriorating rapidly that he visited the doctor. He had lost ample weight without any kind of exercise; he was constantly fatigued and severely insomniac. The doctor, a general physician, checked for diabetes. Reports came out normal. In the next month he lost 5 kilos without any effort. His appetite had gone down significantly and he felt immense lethargy all day long. He began to shy away from tasks and nearly stopped going out of the house. He visited the doctor again. This time he was asked to check his haemoglobin levels, his Vitamin D and B12 levels, and a bunch of other metrics. Reports were normal yet again.
A few weeks later he complained of a stomach and lower back ache. He faced digestion issues too. We observed for a couple of days before making a trip to the hospital. The doctor referred him to a gastroenterologist this time. Meanwhile, his sleep problems were persisting. He had become extremely cranky, irritable and anxious which was entirely uncharacteristic of him. The gastro-physician recommended a liver functioning test (LFT) and a USG as he suspected a case of fatty liver (my father is a teetotaler though). Both reports came out spotless. In the second visit, the gastroenterologist asked him to go for a colonoscopy (which didn’t happen eventually) because he couldn’t determine the ailment. He also recommended visiting a neurologist because my dad’s insomnia had spiraled out of control, and that can be really damaging for BP patients, which he has been for the last 24 years.
We visited the neurologist next. Dad’s weight had come down further. The neurologist conducted an electromyogram (EMG) which is essentially a nerve-and-muscle study. He suspected a nerve issue that was causing the stress and insomnia. Reports were mostly normal though, barring some “tension” in his calf muscles. He was advised a change in daily habits from diet to activities before bedtime etc. He followed the doctor’s instructions diligently. In the first two weeks, his sleep improved slightly. But other things didn’t: He was still lethargic, still irritable and still anxious, and mostly displeased about everything around. He made a couple of more visits to the neurologist and returned discontent every single time. What bothered him most was the unchecked weight loss. In three months, he had lost 11 kilos.
By this time (late-December) I had started Googling his symptoms. The results freaked me out. Unchecked weight loss coupled with fatigue and loss of appetite and stomach ache, and yet, medical tests not being able to detect anything — everything seemed to point at that ailment that shall not be named. I was horrified and helpless. Worse still, Dad mentioned it at the dinner table one night. We wondered: Why did the doctor ask for a colonoscopy? What was he suspecting? What would he say next? I was losing my head (and sleep) over this. A friend suggested taking him for a full-body checkup at a big hospital. But to get my increasingly reluctant father to agree to any more medical tests was a Herculean task. He would say no to everything, sometimes to even medicines. That would lead to unpleasant situations at home.
In January, an old friend of his took him to their family doctor who tested him for prostate cancer. Reports came out normal yet again. We were relieved. But were we? Nothing had been detected for months. He had lost close to 13 kilos in four months. And had become frail, unhappy and intolerant. It was only Google that indicated that it could be a case of severe depression. But no one paid heed to that. Instead, I was given sermons on how “Google is not a doctor”. My mother believed that going out of town (read: going to the hometown) would cure all ills of the world. “Nothing has happened to him. He just needs a change of air,” she announced one day. Quite magically, she’d gotten my father to believe that too. And so they went. In early February, I saw them off at the airport with a heavy heart. Something didn’t feel right about the whole thing but I was sincerely hoping things would look up. After all, dad loved being in the midst of familiar faces. But things started worsening from day one itself and went completely out of hand in a week’s time.
He called me one afternoon and insisted me to come down ASAP because he was feeling awful. And “scared” about his health. He was not being able to do anything, not even sit up on bed for more than 10 minutes. My mother reported that he was barely eating, not sleeping at all, and was constantly on the verge of a breakdown. I sensed a deep concern in her voice. I rushed home… all through the flight battling alarmist thoughts. It was the longest and coldest flight of my life. In the two weeks that I did not see him, he had grown even frailer and made for an utterly painful sight in his over-sized shirt. “I don’t have proper clothes now. Everything is so loose. I have lost so much weight,” he told me. I wanted to cry then but somehow mustered all courage to say, “We’ll go out shopping.” “I have no energy,” he said. “I can barely sit.” He went on to say that his concentration levels had dropped to zero and he was unable to either watch TV or read the newspaper or talk on the phone. The World Cup was on and yet, he felt no desire to watch matches. And this, for a man who is a die-hard cricket fan and wakes up at dawn to catch telecasts from Australia.
In the week that followed, it got from worse to worst. He started getting panic attacks every day — sometimes mild, sometimes severe. We use the term ‘panic attack’ rather loosely in our daily lives. But a real panic attack looks much like a heart attack. It entails involuntary twitching of muscles either in the arms or legs or even full body in extreme cases, fast breathing, and a sense of passing out. It typically lasts 10–12 minutes and slows down on its own. There is absolutely nothing that caregivers can do to help the sufferer, except hold them tight, may be embrace them, and keep saying: ‘Nothing’s wrong. You will get through it.’ My father’s panic attacks were so severe that he would fall over backwards when he tried standing up even with support on either side.
Suggestions kept pouring in from all corners. We were advised to visit a neuro-psychotherapist because this had started looking like a nervous disorder. It was in late February, after more than six months of going from pillar to post in the most premium (bullshit) hospitals of Bombay, diagnosis FINALLY happened. My father was suffering from depression and anxiety of the highest order. It had supposedly set in (without any outward expression though) post his retirement two years ago, and was apparently common among individuals who make a transition from “high-profile, high-engagement jobs that require a lot of multitasking” to a more homebound life.
(Important to note: In his last two assignments spanning over six years, he had served as the CEO of a housing finance company and a financial services company. In the three decades before that, he had served in several leadership positions at the country’s largest insurance company. So yes, he did hold a high-profile, high-engagement, high-responsibility job for many years. But post-retirement, he chose to lead a “relaxed life” that spared him of the 9-to-7 drudgery and required him to attend only board meetings. This meant that his mental activity had declined significantly, his associations had come down, and he had more hours in his day than he could spend. A perfect recipe for disaster, especially for someone who’s not outgoing, has a very inactive social life and doesn’t have too many hobbies.)
His depression lay in the subconscious, never quite affecting him enough for either him or people around him to gauge that something was amiss. When the doctor asked him if he felt hopeless, he said, “only now, in the last few months but never before.” There was family history too. His sister went through a mild bout of depression the year ago. And depression being a genetic condition, it was no surprise that my dad had got it too.
His treatment began in March at the Institute of Psychological Health (IPH) in Thane. We were compelled to visit a psychiatrist because his condition was so severe that he *had* to be put on anti-depressants immediately, and made fit for counseling and therapy. Depression at the end of the day is a chemical imbalance — a drop in serotonin levels in the brain — that really wreaks havoc in the central nervous system. It is as much a physiological condition — as all his symptoms demonstrated — as psychological. To treat it as a “your mind is playing games with you” is preposterous. But that’s what we do right? We use the word ‘depression’ so callously. Enough is now being spoken and written about how depression is different from sadness and how one should seek professional help if they can’t deal with it. But even then, we as people continue to be callous about it.
It was one hell of a task to convince my father that depression could hit anyone at any point in life. It had hit him after retirement but it could hit people in the peak of their careers too. Case in point: Deepika Padukone who around that time was making headlines for coming out with her depression. Officials at IPH suggested that we make my father watch Deepika’s bare-it-all interview with Barkha Dutt. That would allow him to understand that he’s not alone in this hellhole. One in every 4 people in India is depressed. We rank very high in the list of most depressed countries in the world. It would also help him shed the stigma of having to visit a “mental health” institute every fortnight. The “mental health” bit plagued him to no end. That it could bother someone who’s city-bred, well-educated, well-travelled, well-aware, worldly wise and much in sync with today’s times surprised me. Plus, he had a supportive family to boot for… a family that understood his condition and was more than willing (and capable) to do the handholding required in such illnesses. But what made it worse were people’s ‘oh-how-can-it-happen-to-him-of-all-people’ reactions. Screw you and your ignorance! It can happen to ALL people. Such insensitive reactions from perfectly rational folks were disappointing for us, and debilitating for him. He not only hated to admit his condition but was constantly bothered by what others were saying about him. He would tell us every now and then, “What will I tell people when they ask me about my health? That I am under psychiatric treatment?!”
‘Psychiatrist’ is another very loosely used and entirely misunderstood term. A psychiatrist is not someone who gives electric shocks to screaming patients in dark rooms — an image constructed in our minds by years and years of Bollywood tripe. He’s not someone who tells the patient, “Aapko ab dawa ki nahi, dua ki zaroorat hai.” He’s not someone who has a chamber full of “mad people”. He’s not someone who pushes long injections in your body to stop your “madness”. Instead, he’s some kind of a behavioural scientist if I may call it that. But do we care to understand the nuances of mental health? Or even attempt to? No, we’re a doomed lot and we only care about dub-fucking-smash and snap-fucking-chat!
The first day we visited the psychiatrist he asked my dad to pen his thoughts on a piece of paper. My dad promptly said, “I can’t. My head is all jumbled up. I can’t think clearly.” The doctor replied, “That you could explain your condition to me so clearly shows you can… write. It means you’re alert, and thinking.” Eventually he wrote a long note spanning two full sheets of paper. His handwriting hadn’t suffered; his language was impeccable; his thoughts were clear though he was repeating himself. When I read the note, I turned cold. It mentioned the words “half-dead”, and “death” in as many as five places. The summary of the note was this: He feels half-dead, is unable to lead a normal life, and wonders if death is the only cure for his condition. He constantly worries about his wife and daughter whose lives have been totally disrupted by him. The note reeked of self-pity and guilt for his family. I asked the doctor if we had reasons to be worried… so many mentions of death in one note! He assured me that it was common for patients suffering from clinical depression to think that way and it did not imply that my father was suicidal.
But his note had affected my mother deeply. That night she broke down for the first time in all these months. And she’s not a woman to shed tears easily. She cried but she had to make sure that my father wasn’t watching or hearing. The doctor told us in no uncertain terms that we as caregivers have to put on the bravest face and wear a nothing-is-wrong-with-you conviction. Even the slightest display of concern or grief would mean the patient feeding off it and going further down in depression. It was tough, incredibly tough, especially when you spent all your waking (and sleeping) time with someone who was talking only about his fears, anxieties and feelings of worthlessness. It meant putting up a straight face in front of him and then locking yourself in the bathroom, turning on the taps, shower, and exhaust fan before weeping your guts out. All relatives and friends would tell me, “You have to be strong. You have to take care of both mom and dad. You can’t break down.” Yes. The superhuman that I am, I can’t break down.
In the initial two weeks of medication, there wasn’t any significant improvement. Instead, the side effects — dry mouth, sudden appetite, fast breath, dizziness, low blood pressure — started showing up. That freaked him out even more. Perhaps he expected instant recovery. Not unnatural for any patient to do so. He would keep count of the number of times his breathing had gone fast. After every half an hour he would tell Mom or me that his was an “extreme case” and that it was “incurable”. He was ridden with guilt for putting us through this. He would go on and on about how I had taken a break from work to be at home to attend to him. While that was the most natural thing for me to do, it made him feel like baggage. But he couldn’t let us go. He would hate to be alone in a room. One afternoon he broke down. I cannot even begin to describe what it felt to see my father cry and see him as that wary, uncontrollable mess — my father who ran big organizations not so long ago, whose sharp wit and sense of humour lit up family gatherings, and who had lived on his own for the better part of his life in the most dreadful places in India. (Example: Bhagalpur in the mid-90s)
Our job though was only to hear him out. And constantly be by his side, may be hold his hand (a very important gesture for patients suffering from anxiety) and tell him that depression is like any other physical ailment and that he would be fine in no time. Whenever he asked ‘what will I tell people’ I would ask him, “If you had typhoid or jaundice, would you think so much?” He would seem partly convinced. But next day he would repeat the same things. There was so much despair and darkness within him that it was impossible for any light to seep in. It was important though on our part to not overdo any instructions because his mind was ill-equipped to process sermons. He wasn’t fit for counseling yet. And not being able to do what others were telling him to would only lead to frustration. We had to measure every word we spoke to him. We stopped taking calls because if he heard us talking on the phone for longer than 5 minutes, he would start getting restless and anxious. He had become painfully conscious of what people were saying about him. He had switched off his own mobile too lest he had to answer the ‘what-happened-to-you’ brigade.
After about six weeks of heavy medication, he showed some signs of recovery. “Very slow progress though,” said the doctor. The positives: he started going out for evening walks with me (he still lacked the confidence to venture out on his own), his appetite improved, he was reading the newspaper again, he began watching the IPL, and checking his mails and messages. The negatives: he was still anxious, concentration-less, and unable to do official work. He wasn’t talking much either. Not that he was a chatterbox at any time, but he spoke very little now. And smiled even lesser. He would often sit quietly in a corner with his head hung down. Was he thinking something? “No,” he would say. Then why was he sitting in that manner? “I don’t know,” would be the answer. If you asked him how he was, the answer would invariably be “not good”. But he was surely better than he was a month-and-a-half ago. The doctor by now deemed him fit for counseling. He said, “That’s what will really help him come out of this… lots and lots of counseling.” So, therapy and medication were to go on simultaneously.
His counseling began in mid-April. After the first session in which some psychometric tests were conducted, the psychologist told us that there was still “sufficient depression” in him, and his was a “classic case” of depression and anxiety. What aggravated it was his introverted nature and his age that heralds some amount of worthlessness in most people, especially men. “Because women have housework and TV to get through,” he said. Gender stereotyping I thought, but kept mum lest I get into an argument with him making my father all the more anxious.
He’s had three sessions thus far, and though he claims that the counselor is confusing, I can see Dad improving, albeit slowly. He’s certainly more active than he was two-and-a-half months ago, he’s doing yoga every day, he’s going grocery shopping on his own (after weeks of being accompanied by Mom or me), he’s buying fish (that’s a huge metric) from the market, he’s staying up to watch IPL, he’s expressing anger over Salman going scot-free and disappointment over Nepal’s earthquake, he’s gone and watched (and got bored of) Piku with us, he’s playing Sudoku — a mental activity advised by the therapist, he’s reading files and attending his board meetings, and most importantly, eating more and sleeping better. And now if you ask him how he is, he’ll say, “A bit better. But still not fine.”
There’s still a long way to go, say doctors. He’s still frail (he had lost 15.5 kilos in 6 months) though the weight loss has been checked. He still gets fatigued within a few hours. He’s still anxious and impatient about little things like a pending mobile / credit card bill, and he’s still fairly heavily medicated. Right now all the positive hormones are being secreted with the help of anti-depressants. The biggest challenge lies ahead when he is put off them, and his body has to secrete those happy hormones on its own. That’s when a patient has withdrawal symptoms and always stands a chance of falling back into that depressive hellhole.
We are told that clinical depression takes at least six months to a year to be fully weeded out of the system. It’s been only three months of medication and therapy for him. There’s indeed a long way to go. But what this experience has taught us is that depression is something most doctors in India don’t recognize and most people in our society don’t acknowledge until it reaches life-crippling proportions. That ought to change soon. And what gets sufferers and caregivers through the tough times is a strong support system of friends, family, doctors, counselors, and loads and loads of patience. Sometimes you just have to keep staring at the night sky before it’s finally dawn…