Prisoner Cell Block Home
By Rita Pal

Freedom is taken for granted by each and every one of us. A trip to the supermarket, a visit to the park, buying stamps at the post office or running out to the ice cream van can be done by anyone until, of course, there is someone in the house that requires twenty- four hour care. A fall in the bath may cause death, a drink consumed accidentally may cause choking and, of course, if the relative is suicidal, they may be dead while you visit the post office. These practical difficulties result in the carer becoming prisoner in his or her own home. Freedom is no more and life becomes a determined effort to survive. Accurate figures are difficult to obtain due to the hidden nature of caring. However, it is estimated that Britain has around 5.7 million carers and that one in six households contains a carer (General Household Survey 1995). The numbers of carers providing support for more than 20 or more hours every week has increased from 1.5 million to 1.7 million since 1990. In the northwest 17% of adults - the highest proportion in the UK - are carers. Recent studies suggest that there are an estimated 51,000 carers under the age of 18.

My father was a 50-year-old independent consultant surgeon who was cut down in his prime by a stroke. A man who helped others without a thought became totally dependent on his family.  Overnight, we became carers and learned to empower ourselves with the tools of survival. I am a doctor now, but I remember that at the age of ten I became imprisoned in my own house. My mother spoke little English at the time hence we both supported each other.  Coping with the day to day care of someone who had brain damage was very difficult for her. My father coped with the sense of loss and the psychological impact of being dependant while my mother had to try as best as she could not to give up hope.

The middle class area we lived in isolated us further. The ignorance regarding someone that had a mental health problem and was disabled shone through. Soon avoidance of my family was the mainstay treatment At school, the taunts regarding rumours about my father would haunt me. While the majority of children could have friends and bring them home, I could not. My secret world was one where my mother and I knew the price of discrimination by the public.  Through my father’s darkened days, we struggled with incontinence, we hid anything that would harm him constantly due to his unpredictable behaviour and had to watch over him twenty-four hours a day. My mother would do the days and I would do the nights. Sleep happened four hours a day while the other stayed awake. We struggled with endless washing, ironing and constant care. My father’s doctors would come, see and leave while complaining about the smell of urine. In the nights, we heard my father’s cries for help at the frustration of his predicament. He told us, everyone felt he was “no use” anymore and we would be better off with him dead. The guilt of being dependent haunted my father. I often heard my mother's helpless crying when she thought I was asleep. She was alone in a world where everyone had shut the door. My family had suddenly ceased to exist in society.

It was to be the ten years of our lives where we learned to live with minimal input from the outside world. My father was deeply conscious of his condition after being humiliated at the local shop. He had taken three weeks to build up the courage to face the outside world and a thoughtless person shattered him for years. That was the last time he went out of our house alone. From a witty, friendly man who had friends all over the world, soon there would be no one who wrote, visited or even cared. My father’s friends had moved on to better things and would poke fun at him calling him a “failure”.  Through my father’s suffering we understood the wickedness that stemmed from ignorance.

While I had some freedom to go to school, my mother had none. My survival was to pretend that things were different and I would frequently make stories up about the adventures of my father. My mother survived due to the intrigue and entertainment provided by new series such as Dynasty and Dallas that were aired on English Television.  The rest of my family and siblings had decided to ignore our predicament and visits became shorter. Their potential in-laws would come to visit and state “they are so poor, we can’t possibly be related to that sort of family”. Some would look disapprovingly at my father and simply shake their heads.  I was to learn many things about human behaviour like people's wicked stares at my father’s drooped face or avoidance of my family because they never knew how to deal with the problems we faced. It still happens today and we are over protective of my father. We have learned to read the signs and to stay away from anything that may harm my father. This is why we are known to everyone as “social isolates”.

Many people in the United Kingdom are left with no support from the state or organisations, and it is very expensive to hire private carers. They are thus left to fend for themselves and to survive the rough terrain of being a prisoner in their own homes.

We have been through the frustration of loneliness, desolation and discrimination yet through the dark times there has always been a new day with a new world that can be created for yourself.  As a child I read Gone with the Wind and Scarlet’s words spoken in the movie by Vivien Leigh indeed rang true.  “Tomorrow was indeed another day“ and if it was not, the day after definitely would be.

My mother and I have learned that we are the only ones to support each other because there is no one who would understand. Our perseverance has been rewarded; in 1994 my father improved and was able to care for himself despite the doctors stating he would die at the age of 60. He is now 70 years old and continues to defy the medical predictions day by day. We have the USA and their developments in brain injury rehabilitation to thank for providing us with this hope through our endless researches through cyberspace. My father lives a good life now, our tasks are easier and the years of darkness have indeed developed into a success that to us is more valuable than all the millions in the world.  

I struggled through medical school, combining it with the care of my parents. There would be no one who would comprehend the difficulties involved. Throughout medical school, I rebelled against the ignorance of patients' and carers rights. My perception of life and medicine changed forever. I know that behind every patient is a long-suffering carer who is seen and not heard. Throughout the 19 years we have cared for my father we have always found the following to be helpful:

  • Always to play music in the house to improve mood and positivity.

  • To plan the days so that the main tasks can be completed as soon as possible.   We usually make lists and ensure the tasks of the day are done and ticked off. 

  • To ensure that each person who is a carer is able to have at least half a day’s break per week to pursue his or her own interests. While I stay at home to take care of my father, my mother goes out and vice versa.

  • Friendships can be developed on the Internet. We found www.icq.com to be invaluable in forming friendships all over the world. This improved our social isolation and perspective. The Internet in general has revolutionised many carers’ lives and it cannot be stressed enough – every person should have a computer.

  • We made sure that my father had maximum media input e.g. music, TV, computers etc. This reduced boredom and also ensured caring was more fun with someone who was in good spirits. 

  • We found that daily supply of newspapers and magazines improved the way we kept in touch with life outside our house. My father uses these and so do we.

  • Writing is very therapeutic and it is the easiest job to do as a carer. It is to be recommended for every person. Every story is an inspiration to others and it serves as a method of empowerment. I myself used it for the long periods I was unable to go out and it makes time pass, it ensures your imagination is intact and I created my own world to such an extent that I no longer need the “normality” of life to be happy. This is hard to imagine but for many caregivers they are unable to socialise, never able to meet members of the opposite sex for life partners and cannot even go to the movies.

  • Animals are wonderful and serve as companions to those who are ill and disabled. Our dog has been with us for 19 years and is my father’s companion providing him with a source of happiness.

  • Planning a daily routine is the key to avoiding the perils of depression. We cannot stress this enough. It is important to keep busy, positive and happy. It is all possible with some organisation.

In conclusion, we have managed to survive the dark years as we call them. Our world is unlike that of many people. It is common for us to be shunned by those who are ignorant of the physical problems regarding caring. In essence, the underlying determination of caring for a person is the love one has for them. Many people still say to me “why don’t you leave your parents and do normal things like all of us”. Only a selfish person would leave their elderly parents to fend for themselves in a society that makes the lives of carers more difficult that it should be.  Society to some extent has expectations of us as human beings. The “norm” is the source of many people’s anxieties; they perceive themselves unattractive or unacceptable resulting in depression and lack of motivation. I find that it is important to perceive life as the way YOU wish to live it according to your values. So many commodities are stated to be important e.g. weight, looks, money etc but are actually items that should not matter. To care for another person is the most selfless act one can do. Any individual who does this is special. There will be no accolades or prizes but there is a sense of humanity and the best reward is the health of the person you care for.  Those who do not understand will criticise. To be true to oneself as opposed to following the path that society leads us down is probably far more rewarding. Once you as a carer desert society’s perception of who you are supposed to be, you will find the happiness and contentment that often eludes others.

We have all experienced feelings of resentment, of unhappiness, desolation and rejection, but life can truly be anything one cares to make of it. The key to caring is to overcome these problems; from the stormy seas there will be calm because tomorrow is indeed another day which can be filled with the freedom of imagination from our mind’s eye.

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