page updated 14 September, 2007
One of the highlights of the Carers NSW conference was the Carer Panel. It was held on 8 March and facilitated by Dr Norman Swan. Tania Hayes is one of the carers who participated in that panel. This article is the first part of Tania's caring story, prepared by her for the conference. The second part will be published in next month's edition of Carers News.
Growing up I had many hopes and dreams for my future. One minute I was the happiest girl in the world ready to walk down the aisle to marry the man I loved and adored, and the next minute my life changed in such a drastic way. At twenty-two my hopes and dreams disappeared before my eyes and I found myself in the Intensive Care Unit watching my fiancé struggle to stay alive.
April 21, 1997 was the day that the carefree life that I once knew suddenly disappeared into the sunset and here I found myself embarking on a bright new life of responsibility. That new life was called being a carer.
My fiancé, Warren, had just been diagnosed with a life threatening 8cm brain tumour. This tumour was tangled around everything in its path; the brain stem, vital blood vessels and nerves. We were told that even if Warren made it through the operation our lives would change forever. It was certain that he would suffer from complications like brain damage, facial paralysis or spending the rest of his life with disabilities and confined to a wheel chair.
In the first operation to remove the tumour, Warren was left paralysed down the right side of his body. He lost his hearing, swallowing reflexes, and facial and eye functions in that side of his body. From this operation he was left struggling to breathe and was placed on life support. But only two thirds of the tumour had been removed, and the doctors would have to operate again. What followed from that first operation was a horrific series of medical battles, operations, mishaps and close calls. From the moment Warren fell sick I gave up my life to be by his side every step of the way.
During this lengthy hospital stay Warren was confined to a hospital bed for 447 days, the majority of which were spent within the Intensive Care Unit. Each day I would spend 10-12 hours continually by his side, giving him the encouragement and support to survive. I became his eyes, his voice and his strength for the future. During this time he endured 20 operations and suffered from a series of infections, complications and illnesses including spasmodic breathing which saw him rushed back onto life support and we were told that he may never breathe on his own again. Right from the first moment that I entered the Intensive Care Unit, I was immediately taken aside, explained the seriousness of Warren's condition and what I was to see. To me the ability to be informed of every detail I was about to face was so very important, no matter how grim the news.
As the days passed by, I found myself surrounded by compassionate nurses. Not only did they offer me a warm smile each day, but also a few moments of their time to stop and sit with me to ask me exactly how I was feeling. This simple act means so much to a carer. It is hard to sit by and watch someone you love go through pain and suffering. From the conversations I had each day the staff sensed my pain and knew that I wished I could help in some way rather than sitting helplessly by Warren's side. That night the nurse allowed me to help wash Warren and attend to his personal care. Something this little made me feel so re-connected to him again.
In hospital there were times when I felt so alone and scared, like I was smothered by the life and death situations that surrounded me. During these times I was comforted by a highly skilled social worker. She helped me deal with the circumstances I found myself in, and also gave me strategies on how to cope. In this overwhelming time, when my mind felt fuzzy and distant she raised topics that I had given little thought to, such as financial stability, counselling support, leave from my career, permanent disability life insurance, services, support groups and so on. Right from the start and throughout Warren's hospital stay I knew I had someone to turn to and someone who would support me and be my lifeline to cope.
A carer's experience of the health system: Part 2
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page updated 14 September, 2007
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