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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