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.
Printable Version