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| "A pitcher plant" by Susie Mallett, April 2012 |
Caring for the carers
I have always involved the partners and
carers of potential adult users of my conductive services at all initial visits
and in any subsequent individual or group sessions, whether at home or in a centre.
These husbands, wives or parents have many questions and also have problems
that need solving, so it has always been ‘team work’ as far as I am concerned.
These people need our advice on
conductive living too, they need our listening ear. They need access to our
skills in problem-solving. They need our ideas and suggestions just as much as do
the clients themselves. They are our clients too.
They need the opportunity to ask
questions and to share their worries and concerns for the present and for the
future. It is our role as conductors to provide time for them too.
Train travel
When I was travelling by train in
England just after Easter something happened that has never occurred in my
lifetime of rail travel. It really has been a lifetime of train-travel, over
fifty years of it, because Dad was a train driver and rail was always our main
means of travel. For my first quarter-century I travelled free of charge and during
the second quarter-century train travel is my choice because it is such fun!
Turning bad luck into an adventure
In April, for the first time ever I sat
in a train, still in the station, for over two hours waiting for the signal to
go up!
The signal could not go up because
there was a points failure.
I knew something was up before my
family had even said goodbye to me because, with only minutes to go before
departure, the doors of the train had not been opened to allow us to get on
board.
This usually only ever happens when the
cleaners have not finished their work but on this occasion the cleaners were long
gone.
We eventually boarded the train just
before the whistle should have been blown, but there came no whistle, the
engines were not even running.
After about thirty minutes we were informed
of the points failure, a problem that usually takes fifteen minutes to solve
from the control centre several miles away. This time it was taking much longer
and travellers began to get concerned.
I too was a bit concerned but I stayed
on the train, despite home being just around the corner, with the knowledge that
whatever happened to the train the rail company, whichever one it was, was
obliged to get me to my destination, which I am happy to say, they did, albeit
three hours late!
A young girl sitting in the same carriage
was less sure about arriving at her destination in time for a meeting early the
following morning. She had a long way to
travel and we had yet to move an inch. She went outside to investigate and we
could hear her speaking to the guard on the platform.
She returned and confidently announced
to the whole carriage that we had to change trains, so off we all went, laden
with bags, to platform one. Fortunately there were no steps to climb or ramps
to walk up and down, but unfortunately there were no tea and refreshment
trolleys either! By now it was nearly two hours since we had boarded the train.
There were already people arriving who were expecting to be travelling on the
next and last train out that evening!
It was presently announced that those
wishing to travel the next morning could have their ticket endorsed at the
office, and a few subsequently left the train.
I was by now seated next to the young
lady who had conversed with the guard. We decided that as we had the same
destination we would make the most of the journey. We would turn this journey that
we had not yet begun into an adventure, and we began by getting to know each
other.
Let me tell you a story
It is at this point that I continue
with the thread at the beginning of my story.
A three-and-a-half-hour journey turned
into a six-and a-half-hour adventure with lots of time for story-telling.
While on that train I listened to
the story of this young lady’s life and I realised that parts of it I had heard
many times before.
Four years ago my fellow traveller had
received a phone-call while out shopping with a friend. The call was to inform
her that her partner had collapsed. He was in hospital being treated for a
stroke. He was twenty-four years old at the time.
The cause of the stroke turned out to
be a previously undiagnosed heart disorder, and he was taken to the heart
specialist unit at Papworth, near Cambridge, UK.
Recently we have been able to read lots
in the news about incidents concerning undiagnosed heart disorders, especially
in young, athletic men. The story surrounding the Bolton Wanderers footballer,
Muambo comes to mind here.
There I was sitting next to a young
lady who had experienced something not dissimilar in her own life.
Her partner remained in hospital for
several months undergoing heart surgery and later for the rehabilitation that
was necessary for him to recover from the symptoms of the stroke.
Now four years later and after
retraining so he can follow a different career path to the one that he had
planned the young man has returned to work full time, the couple are buying a
house, marrying and looking forward to a bright future.
The young lady however told me what it
was like for her throughout the ordeal and the long road towards recovery and
their bright future.
Wanting to be a part of it
She told me how she wished that she had
been invited to join in the physiotherapy sessions and the cognitive therapy
session that her partner went to.
Not only did she wish to know how she
could help, not only did she wish to understand the problems that her partner
had, she wanted actually to see how hard it was for him, and experience the
effort that he put into making a full recovery. She also said that with
hindsight she would have liked someone to have taken care just a little bit of
her own needs.
She told me about the day that she
drove towards the hospital to collect her partner with her father beside her.
She explained how guilty she felt when she admited to her father during that
journey that, although she was thrilled that they had reached this stage and a
good recovery had been made, a part of her did not want her partner back home
with her.
She was afraid.
She felt that she did not know what to
do. She had no idea how to live life with a partner who was a stroke survivor
and had a heart disease. No one had explained about the medicine that he would
have to take, no one had told her that his short-term memory was still impaired
and how should she deal with this. She had to cope alone with his impatience
when things did not work just as they used to.
This stranger on the train pointed out
to me the missing links in the system that had taken such good care of her
partner. No one looked after her, or
prepared her for the future. No one
had helped her to prepare for this
homecoming so that the release from hospital could be a happy time, and not a
time filled with fear and trepidation.
My story
I had, by about half way through this
story, almost at the end of our journey, owned up and explained that I work
very closely with stroke survivors and their families, and I also owned up to
having several copies of a book that I had just published with one of these
clients, in my suitcase.
I gave this young lady a copy.
The story in the book does not relate
too much to the lives of these young people. Her young man has almost made a
full physical recovery and his memory and his patience continue to improve both
work hard and plan their move and wedding.
I gave the young lady the book because,
after I had told her how I had encouraged my client to write her story down,
she said several times ‘ Perhaps I should write my story too.’
She should, she really should. Maybe seeing
my client’s book will encourage her to do so.
There are not many twenty-four-year-olds
who have a story like hers to tell and it is these stories, written down by the
people who really know, that are the best sources of information for people
like me.
As often happens on a long journey when
adventures occur, whether delays or other incidents, they bring people together
so that they begin to chat, I did not get this girl’s name or any contact
details. She has mine, however, in the book, so all I can do is hope that if
she needs advice or help at any time, or even decides to write her story, that
she would get touch.
By narrating her story on the train she has already
helped me a great deal in my work. I think about this young lady often and hope
that she has influenced me, if only in convincing me of the importance of the
work that conductors do with partners, carers, parents and anyone involved in
the lives of our clients.
