My Father – By Manjiry Tamhane, Patron of Breathing Matters
My father was the life and soul of any party. He was laid back, carefree, open-minded and adventurous. He loved comedy and he had his own library of cringe worthy jokes that had my brother and I groaning and laughing throughout our childhood. He came from a humble background but worked and studied hard to provide a better life for his children. His mother, my grandmother, couldn’t read or write let alone speak English but my father, through sheer hard work and determination, went on to become a Partner in a top London architectural firm. His story is not that dissimilar to make others of his generation. He worked hard, saved for the future and enjoyed his time with family and friends.
In the first 72 years of his life, my father was rarely ill, not even a cold. He hardly ever went to see a doctor and had never been admitted to hospital. He was fit, active and apart from a small belly resulting from his love of good food and wine, he was generally in good shape.
In the early summer of 2008, he had flu like symptoms. It was usual but we simply thought that even the mighty could occasionally catch a cold. The symptoms persisted and his breathing became slightly laboured and wheezy. Almost asthmatic. My mother insisted he visit his GP who dismissed it as a simple cold. My mum unconvinced insisted he get checked out more thoroughly. On closer inspection, the doctor agreed that something was not quite right and he was immediately admitted to hospital and placed on oxygen. That was the start of a 5 week journey that would change our lives forever more.
My father was admitted to the Royal Free Hospital in London and, after undergoing some tests and chest x-rays, he was diagnosed with Idiopathic Pulmonary Fibrosis. When the doctors told me, I could barely pronounce it let alone understand what it was. My father was in hospital for the first time in his life and looked at my mother and I apologetically for all the fuss and nuisance he was causing. His only concern was getting back home and back to his normal life. Both my mother and father had faith that he would be fine in a few weeks. I sat with the doctors on several occasions during those first two weeks trying to understand what was this disease, what caused it, what were the treatments, what was the life expectancy, what drugs were available. Every question was met with a vague non-committal answer. ‘Idiopathic’ meaning unknown cause, no real treatments, a few drugs but no clear evidence as to whether they would work. As a family, we were lost, confused and scared. The only treatment appeared to be a course of steroids and an oxygen cylinder. Three weeks after, my father was admitted, his condition appeared to stabilise; however, I advised my brother to come back from Australia to see my father as the lack of answers from the doctors gave me a sense that all was not quite as it seemed. My father was scheduled to be released from the hospital the day after my brother arrived. We knew adjustments were required at home. We converted one of the ground floor rooms in to a bedroom and with the help of the hospital we ordered a special bed, organized oxygen tanks at home and portable tanks that would allow him to make short trips. Everything was in place to care for my father back home and give him as normal a life as possible.
The night before he was released, my father caught an infection in the hospital and was immediately moved to an ICU room and placed on a BiPAP machine. The scarring in his lungs made it difficult to create enough oxygen to pass into his bloodstream, increasing the pressure on his heart. His pulse rate was very high which increased his anxiety further. I think the night times were the hardest for him. Listening to all the machines and the beeps in the darkness of an empty room. One day, when the BiPaP was removed to enable him to eat, he told me how much he hated the nights and that all he wanted was to go home. From that moment onwards, I spent every night in the hospital with him.
As the days went on, his breathing became more labored and the pain became more intense and he was prescribed Oromorph.
In the space of less than 5 weeks, I’d gone from thinking that my father would be around for many years to come, to realizing that I might have just a few years to suddenly realizing that it was more like a few months. We arranged a meeting with the consultant in charge and in that final meeting they told us that in all likelihood he had just a few weeks. My brother and I agonized over what to tell our mum and more importantly what to tell my dad. There is no wrong or right answer.
My father died the next morning.
The Relentless Search for Answers
I have read many stories from grieving family members since my father passed away and each of these stories paint a picture of a loving mother or father, sister, brother, uncle who have lost their battle with IPF and the sense of confusion and devastation for the family members left behind.
When the doctors first gave us the diagnosis of IPF, I went straight to the internet to search for information. Back in 2008, there was very little information available. I found a few obscure research papers originating in Japan and the US describing various theories and inconclusive results from various trials and I spent hours pouring through trying to find any information that would help. I couldn’t find any information telling me clearly what the disease was, what caused it and what treatments were available.
Eventually, I did find a US website called the Pulmonary Fibrosis Foundation. It started to provide answers to many of my questions and helped to shed some light for me on this disease.
Information in the UK, however, was sorely lacking. I knew at the time something needed to be done about that, but at the time my own grief and caring for my mother took priority.
Coping With the Grief
There’s no handbook or fast track for dealing with grief. After my brother returned to Australia, I was left to help my mother cope with grief and adjust to life without my father. I’m not sure how one goes from spending 45 years with the same person to suddenly adjusting to be alone. After the initial shock and disbelief comes the anger and depression, and this can last a very long time. My mother was very angry for a long time. She felt cheated, robbed of precious time with my father. To begin with, I tried to make life as easy for her as possible. Sorting out any problems, dealing with all the paperwork and being with her as much as I could. Nothing I did seemed to ease her pain and she became more depressed and angry, refusing to go out and see friends and family. After a year, I realized that she was becoming more and more dependent on me and losing her confidence. Even simple tasks such as ringing the gas board to give them the meter reading became too difficult for her. I knew that once she lost her confidence to cope with everyday problems, she would never regain it. The hardest part for me was slowly withdrawing my support and encouraging her to do things for herself. This was probably the single most important thing that I did for her. By giving her the tools and instructions but forcing her to make the phone calls, arrangements and decisions, she slowly gained her confidence and independence. The tasks became a source of distraction and completion of a task became something that restored her self worth and belief. Slowly, over time, the pain eased and she learnt to adjust and cope. Today, she is independent and out-going.